WHO-MHSU: Dialogue about the necessity of the Fundamental Distinction betweenAutismandAutism Spectrum Disorder

It would be very useful to convince the World Health Organization (WHO) that autismis not the same thing asautism disorders”.

Ms Chiara Servili is the autism specialist at the WHO in Geneva (world headquarters). We know her since 2014.


Table of Contents



1. Why it is so important

This subject is of the utmost importance, because theAutism-Disorder Confusion”, which is omnipresent in the world, causes people to see autism only in a negative way:
which does not allow autistic people to lead dignified and fulfilling lives;
which prevents people from seeing the qualities of autism (sincethe qualities of a disorderis an absurd idea), and therefore from developing them;
which makes that the public authorities provide almost no effort to correct thesocial systemto make it more suitable for autistic people (since they believe that autism is onlya defect to be eliminated”);
which therefore perpetuates atroubled and disturbingsocial and socio-generated environment that is difficult for autistic people to bear, which contributes to maintaining their difficulties, their suffering, their exclusion (or self-exclusion, including suicide),
not to mention the stigmatisation and harassment imposed on people perceived asfundamentally defective for life(since their autistic nature is reduced to solelydisorders”).

This is therefore the most important issue for us, because when we try to explain this problem of confusion to public authorities or organisations in various countries, they sometimes refer to the WHO pages whichvery regrettablybegin by announcing thatautismis the same thing asautism disorders(which, even semantically, does not make sense).

Our document powerfully destroys these misconceptions.

It is to be hoped that the WHO will agree to analyse our explanations and arguments, which, at best, could lead them to correct their pages.

And from then on, our explanations of autism would be supported by a respected authority, and things would be less difficult.




2. Our explanatory document

On 10/11/2023, we have sent a very detailed document (81 pages) to Mrs. Chiara Servili (the specialist of autism at the WHO), containing many explanations in order to make understand this distinction (which is essential to the comprehension of autism), and arguments which demonstrate its usefulness for the well-being of autistic people.
Secondarily, this document also solves some common problems of inappropriate or badly translated expressions.

This document serves as asupportfor our meeting, which would be too vague without it, i.e. “starting from scratch”.



2.1. Table of contents of our explanatory document

We have copied the table of contents of our document below, to give a quick idea without having to read the whole thing.

1. “Autism 6
1.1 Our factual description ofAutism” 6
1.1.1 “Essential characteristicof autism 6
1.1.2 “Mental, sensory and behavioural characteristicsof autism (description without a defectological approach) 6
1.1.3 “Self-protection characteristicof Autism 8
1.2. Thedefectologicalcharacterisation of autism (i.e. from anon-autisticpoint of view) 9
1.3. Essential conclusion 9
2. “Autism Disorders 10
2.1. The subjective and debatable nature of the notion ofimpairment/deficiency/disorder” (related to autism) 10
2.1.1. Subjective disorders (related to autism) 10
2.1.2. Examples of subjectivity in the WHOtechnical descriptionof Autism Spectrum Disorders 12
2.1.3. Subjectivity in the WHO’sgeneral descriptionofdisorders” 14
2.2. The objective, factual and undeniable nature of theproblems/difficulties” 14
2.2.1. Objective disorders (related to autism) 15
2.2.2. Objective Difficulties and Disordersfrom the Autistic Perspective 16
2.3. “Socio-Generated ((Impairments)) Disturbances”, according to us 18
2.3.1. Socio-Generated Sensory ((Impairment)) Disturbances 19
2.3.2. Socio-Generated Mental ((Disorders)) Disturbances 19
2.3.3. Other Socio-Generated ((Disorders)) Disturbances 19
2.4. Other possible ((Damage)) Disturbances 19
3. Autism Disordersaccording to the WHO 20
3.1. The WHO’sgeneral descriptionofautism/disorders” (the two ones being confused) 20
3.2. The WHOtechnical descriptionofAutism Spectrum DisordersinICD-11 / 6A02” (WITHOUT the confusion of thegeneral description”) 25
4. Our Fundamental Distinction betweenAutismandAutism Spectrum Disorders 26
4.1. What is this distinction? 26
4.2. Why is this distinction so important? 26
4.2.1. Simply because it is true (i.e. because the current confusion is wrong) 26
4.2.2. Because, even semantically, the current confusion is nonsense 26
4.2.3. Because in some casesautismis not accompanied bydisorders” 27
4.2.4. Because the current confusion hinders the perception and understanding of the qualities of autism (and therefore their development) 27
4.2.5. Because reducingautismsolely todisordersordeficienciesis highly devaluing and dangerous 28
4.2.6. Because it is detrimental tolearning about society” (which is very useful, as long as it is notformatting”) 28
4.2.7. Because the current confusion encourages stigmatisation and serious prejudice against us 29
4.2.8. Because the general negative and defectological social approach thus engendered leads to eugenics (i.e. a form of genocide) 29
4.2.9. Because this confusion does not promote accessibility for autistic people 30
4.2.10. Because the current confusion gives rise to permanent and pointless conflicts between the (generally non-autistic) advocates of the usualdefectologicalapproach and their (generally autistic) opponents 30
4.2.11. Because the current confusion hinders research and understanding of autism 31
4.2.12. And more… 31
5. The negative/defectological andjudgmentalnature of the WHO definitions ofAutismandAutistic Spectrum Disorders 32
5.1. Concerningautism/disorders” (confounded) in thegeneral description” 32
5.2. Concerningdisordersin thetechnical description” 36
6. Other important issues on the WHO website concerningAutismandAutism Spectrum Disorders 38
6.1. TheAnglophone Disorderism Disorder” (cf. “autistic disorders”) 38
6.2. TheFrancophone Troublism Disorder” (cf. “autistic troubles”) 39
6.3. TheAnglo-French Personwithism Disorder” (cf. “persons with autism”) 39
6.4. TheFrancophone Hittism-Affectism Disorder” (cf. “personnes atteintes d’autisme” (“persons hit (affected) by autism”)) 42
6.5. TheAnglophone Havism Disorder” (cf. “to have autism”) 43
6.6 The world upside down 44
7. Additional details onco-morbidities”, “disabilityandsuffering 46
7.1. Comorbidities 46
7.1.1. Problems wrongly attributed to autism 46
7.1.2. Other problems, disorders, pathologies and illnesses that frequently affect autistic people 46
7.2. Thehandicapassociated with thesedisorders” 46
7.3. Thesufferings of autistic people” 47
8. Our positive and realistic approach toAutism 48
8.1. “Autismor Autistic Nature 48
8.2. The Qualities of Autism arising from the Autistic Nature 48
8.3. The benefits of these qualities for society if the current confusion were to be ended, which would make it possible to begin the corrections/adaptations necessary for autistic people but also salutary for everyone 49
9. Additional information: “The needs of autistic people 51
9.1. Harmony in general 51
9.1.1. Acceptance, inclusion, equity 51
9.1.2. No specific restrictions 51
9.1.3. Harmony and coherence in education and in learning about social functioning 52
9.2. Protection againstdisturbances” (i.e. breaches of harmony) 52
9.2.1. Socio-generated sensory ((impairment)) disturbances 53
9.2.2. Socio-generated mental ((disorders)) disturbances 53
9.2.3. Other socio-generated ((damage)) disturbances 53
9.2.4. Other possible ((damage)) disturbances (not socio-generated) 53
9.3. Physical security and freedom 53
9.4. Respect for the autistic nature 53
9.5. Learning aboutnon-autismand autism (qualities and characteristics) 55
9.6. Protection against the serious trap of self-esteem through judgement by others (and other traps) 55
9.7. Discoveries, experiences, and adventures (including travel) 56
9.8. Personal fulfilment and the ‘right to happiness’ 56
10. A question offrames of reference” (or paradigms) – Conclusion 57
10.1 “Natural reference framevs. “Artificial reference frame” 57
10.2. Conclusion 58
10.3. In a nutshell 59
10.4. In one sentence… 61
Appendix A: e-mail from the Alliance Autiste (France) dated 01/06/2023 62
A1. Error ofperson with” (andaffected by”) 62
A2. Confusion betweenautismanddisorders (characterising autism)” 63
Appendix B: Web page of Alliance Autiste (France) on theFundamental Distinction of Autism”. 66
B1. Autism 66
B2. The specific difficulties anddisorders” 66
B3. Autistic disabilities 68
Appendix C: LetterTo the World Health Organization, and for a Healthier Organization of the World (WHO / HOW)” of October 9th, 2015 70
C1. First condition for dignity : the right to be alive, the right to be born 70
C2. Second condition for dignity : the right to live where we want, and how we want 72
C3. Third condition for dignity : not considering assickormadmenpeople who are just different 72
C3b. Regarding autism 73
C4. Fourth main condition for dignity : curing people in case of *real diseases*, and not in case of “differences” 73
C5. In conclusion 74
D. An example of aconjunctionof socio-generated sensory and mental ((impairments)) disturbances, lived very recently 76
D1. Rather detailed chronological description 76
D2. Thenormal non-autisticapproach (of course superficial and erroneous) to this situation 79
D3. Approachfrom the inside” (i.e. precise and realistic, instead ofguessing”) 79
D4. How todecide” (how to choose) between the two opposing approaches (“Who’s right?”) 81
D5. The need for a better understanding of autism and the creation of accessibility policies (and corresponding concrete measures) for ((disabled)) handicapped autistic people 81
D6. The idea that perhaps some explanations by autistic people might be relevant and useful (but are not enough considered) 82
D7. Possible solutions for this example 83



2.2. Our explanatory document in PDF

2.2.1. In English

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2.2.2. In French

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2.3. Attempt to summarise our document using ChatGPT

2.3.1. “Autism

The first part of the letter presents a comprehensive view of autism, aiming to differentiate between the inherent characteristics of autism and the defectological characterization often imposed by non-autistic perspectives.

1.1 Our factual description ofAutism

1.1.1 “Essential characteristicof autism: Autism is portrayed as a natural human difference present from birth, akin to other genetic traits like albinism or physical features such as height. It is emphasized that autism is genetic and hereditary.

1.1.2 “Mental, sensory and behavioural characteristicsof autism:

    • Lack of interest in social interactions and conventional social norms, which can hinder communication and understanding of social cues.
    • Unconventional interests and focus, along with a disregard for social judgments.
    • A tendency to notice and be bothered by anomalies or errors, along with a need for precision and order.
    • Sensitivity to sensory disturbances and a preference for reliability and truth.
    • Perceptiveness towards general trends or underlying structures of things, despite deviating from social norms.

1.1.3 “Self-protection characteristicof Autism: Autism is described to have a self-protective resistance, termedrigidity”, which preserves or even enhances the aforementioned characteristics.

1.2 “Defectologicalcharacterisation of autism

Explains how autism is perceived negatively within societal norms, leading to its characterization as a disorder from a non-autistic perspective.

1.3 Essential conclusion

Emphasizes the distinction between being characterized by certain traits and being defined by them, asserting that autism is characterized by certain difficulties but is not inherently defined by them.

Overall, autism is depicted as a natural variation in human diversity, with its own set of characteristics that may deviate from societal norms but are not inherently negative or pathological.


2.3.2. “Autism Disorders

The second part of the text delves into the subjective and debatable nature of the notion ofimpairment/deficiency/disorderrelated to autism, as well as the objective, factual difficulties and problems faced by autistic individuals. Here’s a summary:

2.1. Subjective and Debatable Nature ofImpairment/Deficiency/Disorder

    • Many problematic behaviors perceived as impairments by non-autistic individuals are actually matters of perspective.
    • Examples include not being interested in complicated social relationships, having restricted interests, and struggling with change.
    • The text highlights how societal norms often clash with autistic characteristics, leading to the perception of disorders.
    • It argues that what’s considered a disorder may be a quality in a different societal context.

2.2. Objective, Factual, and Undeniable Nature of Problems/Difficulties

    • Acknowledges that regardless of subjective perspectives, difficulties and problems faced by autistic individuals exist and must be addressed.
    • Recognizes that while some difficulties stem from the interaction between autistic traits and societal norms, others are inherent and objectively problematic.
    • Differentiates between subjective disorders (seen from a non-autistic point of view) and objective difficulties experienced by autistic individuals.

2.3. Socio-Generated ((Harm)) Disturbances

    • Introduces the concept of Socio-Generated Disturbances, which are external factors from the social environment that disturb autistic individuals.
    • These disturbances include sensory, mental, and other disruptions caused by societal norms, expectations, and environmental factors.
    • Describes how these disturbances affect autistic individuals and emphasizes the importance of understanding them to address autism-related challenges effectively.

2.4. Other Possible ((Harm)) Disturbances

    • Leaves room for the consideration of additional types of disturbances beyond those related to the social environment.
    • Recognizes the complexity of factors contributing to challenges faced by autistic individuals and suggests further exploration.

Overall, the text advocates for a nuanced understanding of autism that considers both subjective perspectives and objective challenges faced by autistic individuals, with a focus on addressing societal barriers and promoting acceptance and accommodation.


2.3.3. “Autism Disordersaccording to the WHO

Chapter 3 delves into the WHO’s descriptions of autism spectrum disorders (ASD), focusing on the distinction between autism and autistic disorders. It highlights discrepancies in language usage that contribute to confusion.

3.1 discusses the WHO’sgeneral descriptionof autism,

where the termsautismandautism disordersare used interchangeably, causing confusion. The chapter critiques the use of language that implies autism as a disease, emphasizing the need for clarity in terminology.

3.2 examines the WHO’stechnical descriptionof ASD in ICD-11/6A02,

which avoids equating autism with autistic disorders. It underscores the importance of precise language but points out other issues, such as a defectological approach, to be addressed in subsequent sections.


2.3.4. Our Fundamental Distinction betweenAutismandAutism Spectrum Disorders

4.1. Distinction Definition

It clarifies the difference betweenAutismandthe Disorders that characterize it,” emphasizing its fundamental importance.

4.2. Importance of the Distinction

    • 4.2.1. Truthfulness: The distinction is essential because the current confusion is inaccurate.
    • 4.2.2. Semantic Clarity: EquatingAwiththe problems of Ais nonsensical, akin to sayingbicycle” (orcycling”) is the same asthe benefits of cycling.
    • 4.2.3. Variability in Presentation: Sometimesautismmay not be accompanied bydisorders,” especially in mild cases and supportive environments.
    • 4.2.4. Recognition of Autistic Qualities: The current confusion overlooks autistic strengths and prodigies, perpetuating a negative view of autism.
    • 4.2.5. Dignity and Self-esteem: Reducingautismsolely todisordersdevalues autistic individuals, contributing to low self-esteem and even suicide.
    • 4.2.6. Learning and Adaptation: The current confusion hinders autistic individualsadaptation to society by labeling them as fundamentally deficient.
    • 4.2.7. Stigmatization and Prejudice: Misconstruing autism as a disorder leads to societal rejection, discrimination, and even eugenics.
    • 4.2.8. Accessibility: Correctly understanding autism is essential for creating accessible environments and policies for autistic individuals.
    • 4.2.9. Resolution of Conflicts: The confusion leads to conflicts between those viewing autism as a defect and those embracing their autistic nature.
    • 4.2.10. Research and Understanding: Distinguishing betweenAutismandAutism Spectrum Disordersis vital for accurate research and understanding.
    • 4.2.11. And more: Various other reasons support the importance of this distinction, although they may not all be explicitly listed.

2.3.5. The negative/defectological andjudgmentalnature of the WHO definitions ofAutismandAutism Spectrum Disorders

5.1. Concerningautism/disorders(confounded) in thegeneral description

This chapter shows the words in the WHO text that aredefectological “.

The language used in WHO texts tends to convey a negative perspective, suggesting that those not fitting into societal norms are inherently flawed.
There is a critique of the use of the wordatteint(e)(s)” in the French text, which contributes to a negative impression.
Although the English version is less problematic, there are still issues with terminology such asrisk of autismand equating ASD with autism.

5.2. Concerningdisordersin thetechnical description

This chapter shows the words in the WHO text that aredefectological “.


2.3.6. Other important issues on the WHO website concerningAutismandAutism Spectrum Disorders

6.1. Anglophone Disorderism Disorder

The termdisordersinaccurately portrays autism as a personal flaw rather than a response to societal inadequacies.

6.2. Francophone Troublism Disorder

Similarly, the French termtroublesimplies that autistic individuals are troubled, whereas societal conditions are often the source of distress.

6.3. Anglo-French Personwithism Disorder

The phrasepersons with autismincorrectly suggests that autism is detachable from the individual, undermining autistic identity.

6.4. Francophone Hittism-Affectism Disorder

Describing individuals asaffected by autismperpetuates the misconception that autism is a disease, rather than an inherent aspect of identity.

6.5. Anglophone Havism Disorder

Sayingto have autismimplies ownership of a condition, reinforcing the idea that autism is something undesirable.

6.6. The world upside down

Society often misunderstands autism, viewing it through a distorted lens that emphasizes deficits rather than recognizing societal shortcomings.

In essence, these linguistic nuances reflect broader societal misconceptions about autism, perpetuating stigma and hindering efforts towards understanding and acceptance.


2.3.7. Additional details onco-morbidities”, “disabilityandsuffering

This section provides additional insights intoco-morbidities,” “disability,” andsufferingrelated to autism, emphasizing that these aspects are not essential for understanding the necessity of the Fundamental Distinction outlined in previous sections.

7.1 Comorbidities

    • Issues like depression are wrongly attributed solely to autism but affect autistic individuals who have been socialized. These problems should be addressed without conflating them with autism itself.

7.2 Thehandicapassociated with thesedisorders

    • The handicap stems from societal barriers, lack of accessibility measures, social assistance services, and understanding of autism and non-autism by families and the broader social environment.

7.3 Thesufferings of autistic people”:

    • Autistic individuals primarily suffer from the consequences of the lack of proper consideration of autism rather than from autism itself.

Overall, the text emphasizes the need for a nuanced understanding of autism and the challenges faced by autistic individuals beyond the condition itself.


2.3.8. Our positive and realistic approach toAutism

8.1. Understanding Autism’s Nature

The text discusses the distinction between autism and ‘autistic disorders,’ suggesting that autism represents a form of self-protection or resistance, preserving natural harmony within individuals or even within the human species.

8.2. Qualities of Autism

It acknowledges the challenge in describing autism’s qualities due to their complexity. However, it suggests that the characteristics outlined earlier in the text resemble positive points or qualities.

8.3. Benefits for Society

The text argues for the benefits of recognizing and embracing the qualities of autism for society. It emphasizes the importance of correcting societal confusion about autism and the need for societal adaptations to reduce harm and promote well-being for all individuals, including autistic people. The text urges understanding autism beyond negative manifestations and sees autistic individuals as valuable contributors to societal improvement.


2.3.9. Additional information: “The needs of autistic people

9.1. Harmony in General

    • 9.1.1. Autistic individuals require acceptance, inclusion, and equity in all environments due to their rights and the necessity for social integration to reduce distress and promote self-esteem.
    • 9.1.2. Autistic individuals should not face specific restrictions beyond those applied to others, especially avoiding over-protection within family dynamics.
    • 9.1.3. Consistency and coherence in rules and their application are crucial in educational and social settings to accommodate the cognitive preferences of autistic individuals for harmony and fairness.

9.2. Protection AgainstDisturbances

Various socio-generated disturbances, including sensory and mental disruptions, pose significant challenges for autistic individuals, necessitating societal recognition and action to mitigate these impacts.

9.3. Physical Security and Freedom

Ensuring physical security and freedom for autistic individuals is essential for facilitating unique life experiences and discoveries, requiring tools like reliable GPS tracking systems when appropriate.

9.4. Respect for the Autistic Nature

Emphasizes the enrichment brought by autistic individuals to human biodiversity, urging society to embrace autism rather than eradicate it through measures focusing on harmony and corrections of societal errors.

9.5. Learning aboutNon-Autismand Autism

Stresses the importance of understanding both non-autism and autism to navigate societal systems effectively, while preserving self-esteem by appreciating the qualities of autism.

9.6. Protection Against Self-Esteem Pitfalls

Recognizes the dangers of self-esteem issues arising from societal judgments and emphasizes the need to protect autistic individuals from this trap while providing education on its mechanisms.

9.7. Experiences and Adventures

Advocates for enabling autistic individuals to pursue experiences, adventures, and travels to facilitate learning and personal growth, aligning with principles of acceptance and accommodation.

9.8. Personal Fulfilment and the ‘Right to Happiness

Highlights the necessity of holistic approaches to fulfill the needs of autistic individuals, emphasizing that this is incompatible with reductionist perspectives that solely focus on disorders.

Overall, the text underscores the importance of understanding and accommodating the diverse needs and preferences of autistic individuals within societal frameworks to promote inclusion, equity, and personal fulfillment.


2.3.10. A question offrames of reference” (or paradigms) – Conclusion

10.1. Natural vs. Artificial Reference Frames

The document contrasts two frames of reference: thenatural framecharacterized by harmony and coherence, to which autistic individuals naturally adapt, and theartificial framemarked by disharmony and incoherence, posing challenges for autistic individuals.

10.2. Conclusion

Understanding the subjective nature of autism disorders and recognizing autism’s qualities is crucial. Ending confusion between autism and disorders is essential to appreciate autistic individualscontributions and prevent unnecessary suffering.

10.3. In a Nutshell

Accepting autism as a natural variation rather than a defect allows for better adaptation and a dignified life. However, societal perceptions must change to facilitate this understanding and provide fair conditions for autistic individuals.

10.4. In One Sentence

It is no measure of health to be (well) adjusted to a profoundly sick society.
Jiddu Krishnamurti

Overall, the conclusion emphasizes the importance of redefining perceptions of autism to foster acceptance, understanding, and equitable treatment for autistic individuals.

The conclusion of the document highlights the stark contrast between thenaturalandartificialframes of reference concerning autism.
It asserts that autistic individuals naturally align with a harmonious, truthful existence, whereas societal constructs often impose disharmony and falsehoods.
By recognizing autism’s intrinsic qualities and distinguishing them from perceived disorders, society can better appreciate the unique contributions of autistic individuals and alleviate unnecessary suffering.
The conclusion calls for a fundamental shift in societal perception to provide equitable conditions for autistic individuals, emphasizing the need for the World Health Organization’s involvement in addressing and correcting the pervasive misunderstanding of autism.
Ultimately, the conclusion advocates for a paradigm shift towards acceptance, understanding, and fairness for autistic individuals within society.


2.3.A. Appendix A: e-mail from Alliance Autiste (France)

Appendix A is an email from the Alliance Autiste (France) addressed to Michelle Funk and Nathalie Drew Bold of the World Health Organization’s Department of Mental Health and Substance Abuse. Dated June 1, 2023, it highlights two critical issues regarding the WHO’s designations and approaches to autism.

A.1. Error ofperson with

The email points out the inappropriate use ofpeople with autisminstead ofautistic people”, emphasizing that autism is part of their nature and identity, not something they bear or wear. It also criticizes the French translationpersonnes atteintes d’autisme” (“people affected by autism”) as misleading and stigmatizing.

A.2. Confusion betweenautismanddisorders

The email notes a persistent confusion betweenautismandautistic disordersin WHO materials, which undermines understanding and perpetuates stigma. It argues that autism and its associated disorders are correlated but distinct, urging the WHO to correct this misconception.

The email concludes by requesting clarification on the WHO’s plans to address these issues and offers expertise and consultation from autistic specialists. It emphasizes the importance of accurate terminology for the well-being of autistic individuals globally.


2.3.B. Appendix B: Web page of Alliance Autiste (France) on theFundamental Distinction of Autism

Appendix B summarizes the content of a web page from Alliance Autiste (France) titledFundamental Distinction of Autism.The document emphasizes the importance of distinguishing between autism and autistic disorders. Here are the key points:

B.1. Autism as a Natural Human Characteristic

Autism is portrayed as a natural biological human characteristic, akin to albinism, and is part of human biodiversity. It underscores the need to protect and develop the qualities associated with autism.

B.2. Differentiating Autism from Autistic Disorders

The document stresses the distinction between autism itself and the specific difficulties and disorders associated with it. These difficulties are categorized into subjective disorders and problems related to impairments, emphasizing that they are not inherent to autism but arise from socio-generated factors.

B.3. Disabilities Resulting from Non-Autistic Environment

Autistic disabilities are attributed to difficulties and disorders arising from societal factors rather than autism itself. It argues that autism is not the direct cause of disabilities but rather the failure of society to accommodate autism appropriately.

B.4 Clarifying Misconceptions about Autism and Disabilities

The document challenges the notion that autism is a disability in itself, emphasizing that it often leads to handicaps due to societal barriers. It calls for a better understanding of autism and the reduction of impairments that affect autistic individuals.

B.5. Analogy to Left-Handedness

The text concludes with an analogy comparing autism to left-handedness, highlighting that being autistic is not a deficiency but a different way of functioning that requires societal acceptance and accommodation.

Overall, the appendix advocates for recognizing and respecting the distinct characteristics of autism and addressing societal misconceptions that contribute to the marginalization of autistic individuals.


2.3.C. Appendix C: LetterTo the World Health Organization, and for a Healthier Organization of the World (WHO / HOW)” of October 9th, 2015

The letterTo the World Health Organization and for a Healthier Organization of the World (WHO / HOW)” dated October 9th, 2015, expresses Eric L.’s personal thoughts regarding dignity in mental health. The letter addresses several key points:

C.1. The Right to Be Born

Eric L. advocates for the right to life for individuals with neurological differences, such as autism and Down syndrome, highlighting concerns about the trend towards eugenics and selective abortion based on disability. He argues against interfering with the natural cycle of life and emphasizes the value of every individual’s existence.

C.2. The Right to Live Where and How We Want

He calls for deinstitutionalization and inclusion of individuals with mental differences in society as full citizens, emphasizing the importance of liberty and equal rights for all.

C.3. Avoiding Stigmatization and Misdiagnosis

Eric L. argues against labeling people assickormadsimply because they are different, emphasizing the need for understanding and acceptance rather than attempts tocorrectorcurethem based on misconceptions.

C.4. Curing Real Diseases, Not Differences

He stresses the importance of distinguishing between genuine mental health disorders and differences in thinking or behavior, advocating for compassionate understanding and accommodation rather than attempting to normalize individuals who are inherently different.

C.5. Addressing Root Causes

Eric L. calls for addressing the underlying causes of societal problems, such as lies, illusions, possession, and power obsessions, rather than attempting to cure or eradicate the victims of these problems. He emphasizes the need for a deeper understanding of mental health issues and a shift towards addressing societal constructs that contribute to mental distress.

Overall, the letter advocates for greater respect, understanding, and acceptance of individuals with neurological differences, challenging societal norms and calling for a more compassionate and inclusive approach to mental health.


2.3.D. An example of aconjunctionof socio-generated sensory and mental disturbances, lived very recently

This text describes a recent personal experience involving a series of socio-generated sensory and mental disturbances that occurred unexpectedly. The situation involved multiple disturbances happening almost simultaneously, making it difficult to adapt. While the detailed personal account is available elsewhere, the document attempts to depersonalize and describe the problems.

The chronological description outlines various sensory and mental disturbances, including unwanted touching, perceived injustice, frustration with communication barriers, invasion of painful memories, discomfort due to temperature, and more. These disturbances culminated in a distressing encounter with a person who touched the individual unexpectedly, exacerbating the existing mental turmoil.

The document contrasts thenormal non-autisticperspective, which might perceive the individual as irrational or mentally disordered, with the viewpoint from inside the experience. From the autistic person’s perspective, the disturbances are reactions to societal behaviors and norms that fail to accommodate their sensitivities and needs.

The text argues for better understanding of autism and the creation of accessibility policies to support autistic individuals. It suggests practical measures such as optimizing preferential lanes to include social distancing reminders, training staff to recognize and respond to autistic behaviors, addressing issues with environmental settings, and promoting acceptance and understanding of neurodiversity.

Overall, the document advocates for a shift in societal attitudes and policies to recognize and accommodate the unique needs and sensitivities of autistic individuals, rather than pathologizing their behaviors.




3. Meeting

(A remote meeting is planned for November (or December) 2023)

The meeting with Ms Chiara Servili happened on December 13th at 10pm CET, and lasted 1 hour and 20 min.



3.1. Full transcript of our meeting

CS = Chiara Servili (WHO, World Health Organization)
EL = Eric L. (Autistan Diplomatic Organization)


0. (salutations and technical adjustments)


1. EL: Thank you very much for accepting this meeting. I think that we have met in 2014 and 2015, in October,
[CS: Yes]
it was a long time ago, and since then, I’m trying to continue to do what I can about autism, for autism, for the cause, and my thoughts have evolved, are more precise (maybe), and now the situation is that I think that there is really a big problem with what I call the confusion betweenautismand what they callthe disorders of autism”.


2. CS: Yes, I read your document. Can I ask you some questions ?
[EL: Of course]
Yes, because I think, as you were saying, this is an evolving field, there has been a lot of there has been a rapid evolution in the thinking and the percept in our way of even understanding or conceptualizing autism spectrum disorders.
And so the terminology is an issue, to be honest, because from from one end we as WHO we refer to the ICD-11 classification, and there of course we have this category of neurodevelopmental disorders, and under that we have autism spectrum disorders, so it is framed as a disorder and this is already creating some problem for us because even [for] “mental disorders”, currently, the terminology is being criticized, so [we] WHO for instance in the broader field of mental health, we are avoiding talking about disorders, we are using mental healthconditions”, just because of the negative connotation of disorders per se.
But yes for autism it’s difficult also to move away fromautism spectrum disorders”, there is no other alternative terminology that has been proposed to define the condition in alignment with ICD-11.


3. CS: So this is one aspect, so from one end we have this legacy of ICD-11, that we refer to, and on the other end, I see the value of the neurodiversity perspective, and I as I read your document I think you’re not usingneurodiversityin your in your writing and I was wondering how you do you think, what is your perception about it, because at the beginning, in the introduction I think, the way you refer to diversity in the biological wordminorities
[EL: “human biodiversity”]
Yes so you refer to that concept, and to certain extent the conceptualizing of autism by challenging the perspective on deficits and difficulties is similar to the point made by the neurodiversity movement, and the social aspect that you are also highlighting, as central in terms of the adaptation of the social environment versus [chuckling / smiling] the fact [the idea] thatautism is the problemand it requires to be changed, I mean that the symptoms are creating a nonfit with the environment, so that is similar as well, so I wonder what you think about about the neurodiversity movement.


4. EL: All this is difficult and you talked about really the very difficult subjects, but we have to try to understand each other, and for me it’s not very clear, but to try to answer you, I’m not against neurodiversity [approach], I don’t use that term : why ? There is a there is a reason why I don’t use it : because I think that autism is not just about neurological things.
Obviously it is activating, so to say, the neurological system, because of what I call thedisturbances”, (en français, lesatteintes”), so it is neurological because wereceivewhat I call that disturbances, so this is the external, sensorial things, and also in the brain of course it’s neurological also, (you know it better than me), so it’s it has a lot to see with neurology of course, but in my opinion it’s just an aspect, I mean that neurology is just middle mechanism in between our true self, our true ourselves, and the rest of the world : it’s just a tool
So I’m not against neurodiversity [approach] but I I always had a little problem because it reduces autism to a neurological something : why ?…
I don’t know if it’s very clear what I try to explain


5. EL: And there is also another problem with the neurohow to say sayI like it, but the movements, the communities and all these things, they have a tendency to see only one one side, “black or white”, so to say, and of course the persons who are activists in the neurodiversity movement, they are not in what we call thesevereautistic people, who are very deeply disabled
So they see the reality with their own eyes and they have less challenges, so they have a tendency to less realize the difficulty of the challenges of the majority of autistic people, I think something like maybe 90%, they would not even be able to participate to such a movement because they don’t understand this
And also in France for example, the severely challenged autistic people, we don’t see a lot of them in the streets for example or in the shops or in [etc.]…
Here in Brazil, we can see them, they are free, but in France we don’t see them so we don’t reallyWe, the light / the mild autistic people weme, in the past, I did not really realize how much it is a problem, there is really a problem, we cannot sayoh it’s just a difference and there’s no problem”.
So, when I say this, when I sayoh it’s just a difference”, here it’s very important to understand the difference between autism and the troubles [ordisorders”].
I’m not negating the troubles : of course there are troubles and that’s why the neurodiversity movement, they upset really much the families when they have this approach tending to minimize the difficulties because the families they are living sometimes nightmares 24 hours a day, so it’s really insulting for them, so we have to be honest


6. EL: So anyway for me it’s very obvious that autism is something, is autism, it’s a natural difference, like I said, like the fact of being albinos (so, albinism) and such things, and in my opinion, autism per se, in itself, is not really a problem.
And the disorders, the difficulties, like I tried to explain in my document, there are the difficulties or the disorders which are just a matter of point of view, for example, the best example is the inability to lie which is, from a social point of view, a problem, a disorder, a deficit, a defect and so on, but from another point of view (the point of view oflife as it should be”), it’s good it’s a very nice quality !
So these are what I call the subjective disorders or things like this, and there are also the objective ones which are really big problems : if a a kid or an adult is unable to eat correctly or is peeing in the street and so on, this is really a problem, we should not say that there is no problem.
SoIn other words, we could say that autism is a human difference with qualities and defects.
There are the qualities. There are very important qualitiesit is true


7. EL: And on top of that, when we see mostly the defects of an autistic person (mostly because he or she is not in the correct environmentsocial or socio-generated environment), his or her autistic qualities are completely blocked inside, and it’s almost impossible to evolve, to develop these things.


8. EL: And there is also another thing. I think also that people should not be obliged to be geniuses and to have special qualities and to do incredible things etc., to have the right to live in a decent life, this is very important
So I don’t know if I if I answered exactly really to your question, but we are trying


9. CS: YesYes, what really resonates with me is this recognition of the heterogeneity, the variability in thewhen we talk about autismindividuals may have very severe challenges, and and may have mild onesor may havemay really have someyeah some differences in the way of interacting, communication, but that does not create an impairment.
So there is this extremes of variability in what we refer to when we talk about autism, andI could totally agree with you that, while I find the concept on neurodiversity a very good one (I really like it), I have also been confronted with the perspective of the caregivers and they are absolutely concerned and afraid about WHO going the way of talking about neurodiversity and moving away from the ICD-11 language because they’re afraid of losing entitlement to have services and particularly in ????? countries where governments need to make choices.
They are concerned that kids who are for instance minimally verbal (they’re not able to communicate, they have severe behavioural problems, for instance self injuries), thatI meanthe families are really concerned about not getting the support from the government in terms of the services that they think could be helpful for their kids


10. CS: So there is this different perspective, and I find that you are recognizing the different elements ofyes there is a diversity, and autism can be conceptualized as anaturalvariationof certain phenotypes or some certain features, of us as a human being, but also recognizing that some of the persons with autism spectrum disorders have severe impairments that create difficulties in their life and even in their well-being.


11. CS: What is not is less clear to me, is why
So, I want to clarify first thefact sheet”.
The fact sheet was written with onlyautism spectrum disorders”. It was a fact sheet on autism spectrum disorder.
The communication team perceived that talking about autism spectrum disorder was not good in a fact sheet because the fact sheet is not a technical document, it’s supposed to be a document on the website for the lay public [i.e. non-professional public], so for the people, not for not a technical document.
So they were arguing against usingautism spectrum disorderand they saidwe need to use autism, this is the word that the people uses”, and so it basically it was changed, it was a fact sheet on autism spectrum disorder, it became a fact sheet where autism was used, and I try to explain the beginning that
[EL: This is the big problem.]
Yeah I understand, so just to let that the fact sheet was written withautism spectrum disordersinstead ofautism”.
So I can understand your point. I think what our communication team has been trying to do is something similar to what has been done for the mental health field.
As an expression of recognizing the concern of the public about using some words, some terminology that has a negative connotation, we have been moving away from usingdisorders”.
So instead of sayingmental disorders”, [we say] “mental health condition”.
So there was an intention to go in that direction here with this fact sheet and avoid [to] usedisorders”, because there is a lot of


12. EL: I seeWhen you removeNormally it isautism spectrum disorders” : if you just writeautismthen you kick awaydisorders”,
[CS: Exactly]
so it seems good, it seems good for the general public, and for your team
But in fact from my point of view it’s a big problem

Let me tell you, it’s really a big problem, because each time we try in France with Alliance Autiste, when we try to explain to the Délégation Interministérielle [about autism] and the CRAs [Centres de Ressources Autisme], when we try to tell them that their web pages are wrong, becauseon every web page in France about autism, almost always the first sentence that you can read, isautism is autism spectrum disorders”, it’s the same thing.
Or [we can read] “is also called” : “autism is also called autism spectrum disorders”.
From my point of view
I don’t know if you had the possibility to read really all because my text was really long, but if you manage to read all, then you should really understand that it’s really a big problem if you confuse autism (a human variant or variation as you said) and the problems that go with it.
It’s a very big problem


13. CS: Can I ask you something
[EL: Sure]

For instance, if we take myopiaMyopia can be conceptualized as a human variation, right ?
How many of us have glasses because we are having myopia
But it’s also a disorderSo the fact that it’s a different way of seeing, in this way, right, it doesn’t prevent it from being a medical condition
And it doesn’t need to be stigmatized, it should not be seen as a deficit, in a way, right, it’s a different way of seeing okay but it creates a problem for me because I want to drive a car and I’m not able to do it so the fact that isrecognizing that the difficultyI don’t see it as a problem the fact that autism, in my view recognizing that it is aI totally get it and I totally agree that there is a continuity in the expression of our ways of interacting and being able to communicate and having special interest and so on, there is a variability in the general population and it’s not a one-off, there is really variability that we can conceptualize as even a continuum, and at a certain stage I think there is a definition, okay this is autismbut it’s a bit complexbut what I think isin the absence of a clear marker to define what is Autism Spectrum Disorder, we are relying on a description of symptoms, and most importantly for me, we are relying on the impairmentso the fact that there are many people that have some specific traits (I’m really bad with orientation in space I’m really horrible with that: this is a special trait of the way that my brain functions, okay, there is not a condition to call this but there could be, and I could have this condition, but it doesn’t prevent me from thinking that this is a variability in the way ofit’s a human variability, a variability in this particular trait and competenceso I don’tthere are certain conditions that are one-off, there are other conditions that arereally a way of recognizing that in some cases, having some specific traits can lead to certain difficulties, and when this is the case, when there is a difficulty and impairment, then we need to put a name that should not be stigmatizing and should notshould just be a label to say [that] this person has the right to receive some specific support, and this does not prevent us from saying, given that, the environment needs to adjust to be fit for everyoneso it’s noteither or”, I see the environmental component of actions as complementary to the provision of support and care.


14. EL: I’m not very sure that wewe managed tothat I managed to really make understand how I see really of a complete differencedistinctiondifference between autism and autism disorders but let’s try to continue
[CS: Yeah]
Look, I will tell you some things. For example, even in the groups (WhatsApp, and so on) with autistic people, even in all the world, sometimes I ask this question to only autistic people, but these are autistics who use WhatsApp, so of course we know that they already have a quite high level
[CS: Sure]

And when I askDo you see a difference between autism and autism disorders?”, almost all of them tellNo it’s the same thing”…
But in my opinion it’s just because they are conditioned, they are told this and they repeat it. And fortunately I found two or three people inI don’t remember which countrieswho told meI understand what you mean”…
But it’s difficult toeven with all my textSorry, I think that I did not really manage but let’s try


15. EL: Look, how to sayYou know the concept of the Flat Earthin the pastpeople were supposed to believe that the Earth was flat, which is not right, but let’s imagine, and when you live on the… – sorry, I don’t want to offend you, there’s nothing like thatbut when you imagine that the Earth is flat and you never had any point of view to realize that it’s not true, there is no problemin this system, in this paradigma there is no problem.
But once you understand that in fact no, the Earth is a sphere (more or less), then it’s so obvious, it’s absolutely obviousit’s obvious but it’s difficult to explain to the people who did not have this remote view.
So now let’s try to explain something else.


16. CS: Can you remind me the definition of autism? I’m just going back to the documentbut when you define autism, how you do you define it?


17. EL: Well I don’tI’m not sure that I defined it
At the beginning, I made a list of characteristics
Because it’s very difficult to define autism
Wellhonestly, I have my own opinion about autism, and probably I wrote it in the documentbut when I say it, in general people don’t like it, because it seems… “too much”…
*My* opinion about autism is that it is an auto-protection of natural Harmony.
And of course it’s really shocking for most people when you say this, but I’m really convinced of this, even, whenin fact, when you see that autistic people sometimes they [doing like crazy gestures] they are like this, or they eat themselves and so on, it looks completely in total contradiction with what I say
But when you think more in fact it’s totally logical, because if the people are verytheir system is very very pure and harmonious and so on, and clear and all, of course when there is a little thing (that that is not harmful for non-autistic people), for them it’s resonating you see, it’s really difficultAnd sofor me, it’s something that is difficult to explain and to prove, but I can observe this, I mean, I can confirm this with almost all the things that I’ve seen since eight years: every time that I analyze situations of autistic people (including my situation), I can always confirm this.
So, of course, contradictors can say that I am in auto-persuasionit is possiblebut I have proofsof many things
And I want to tell you something else
(Sorry: about my own definition of autism, it is either auto-protection of natural Harmony, or auto-protection of harmonious Naturalitymaybe better the second one.
So this, when I say this, it looks like something rather philosophical or I don’t know, but it’s the essence of my thoughts and my observations.)


18. EL: And now another thing: you say that in autism, or in the autistic disorders, it’s difficult to find a marker, and to find a point where you can sayAh, now (here) there is autismand under this (point) there is no autism”: that’s rightbut for me it’s not a problem because… (you see my two hands [on the screen]), for me it’s two things really differentthey go together, like my two hands they go together, but these are two different handsso, for me autism is
For example, the color of the skinI’m very white and here in Brazil there are so many different colors (they asked to the people, they made a survey and they asked them to define their own colors and they had 400 responses to say their own colors but let’s close the bracket), so the colorthere is from very white in the northern countries, to very black in some African countries, it’s like, for example for homosexuality and so many things
So for autism it’s the sameso, this is autism (I say *autism*), so there can be very mild autism and very strong autism, but the disorders and challenges that go with it, logically they go together: if you have very mild autism (like me), you have not much challenges, I don’t have a lot but I will tell you later, after, and so on, if you have very very strong autism nature, then of course you have a lot of difficulties and challenges because you are autistic but also because the environment mostly social and socio-generated environment is not designed to accept this
And when you say
(Hemthe noisewhen you say
[There is a distracting noise in the office of Chiara Servili and she asks someone to stop it.]
[CS: sorry, I got distractedyeah]


19. EL: When you say just just… (une parenthèse) [a bracket] about the noisepeople don’t go far enough in their analyses about autism: for example they sayAh, the autistic people, they can’t stand the bright lights or the strong noises and so on: in my opinion it’s not that
What I tried also to explain in the document is thatwhat is disturbing us is not necessarily the fact that it is bright or that it is strong, it is because it is *disturbing* the *coherence*, the *harmony*: it should not be here (the noise or the smell and so on)…
This is my theory, but I see it, I see it every time everywhere.
So about about the challenges, for example in my case, my autism is very light, but I am enough autistic to understand so many things about autism… (…)
soI am light autistic but when I have difficultiesin fact I have big difficulties, but it’s subtleit’s in the relationshipsfor example with the French Administration, it’s a nightmare, a total nightmare, but very few people can understand it
Or here in Brazil, given that I arrange my own lifeit would be too long to explain, but I arranged what is around me, and I live where I want, and the people here are very kind, and it’s very friendly for the autistic people, at least here in Copacabana, so I have almost never any problem
Sometimes with neighbourssometimes the dogsbut recently, I had a problem in a shop, and it was like an avalanche, all of a sudden, because of the air conditioning which was too cold, and a customer passing before me at the waiting line, and, at the end, someone touched mein in the backand this is something really horrible for me
And I started to explode and to shout and toit was really big
After that, when I came back at home I was a bit ashamed because it was too much, and I know that they cannot understand
But just to tell you that even when you are a very very mild autistic and when you are verycapable”, I mean to travel and to do so many things, you still can have challenges, but of course I admit that it’s not as much as some autistic kids or adults that I have seen, that are objectively not autonomous.


20. EL: But the question is thatfor example when you said about the institutions in North America or something like this, and you said that they [the families and/or the caregivers] are afraid and so on, butyes, I understand
So, there are two aspects in this: there is the economical aspect (the works and the jobs, employment and all this), this is a big problem, but anyway even if there was not this aspect (imagine that the kid or the adult is living at home), anyway the parents can rightly be afraid by the perspective of neurodiversity and so on, and it’s really not fair for them, it’s really not fair.
But, HERE, I want to explain something, it’s a bit complicated, it’s a bit difficult butin fact, for example, when you say that there are some autistic people who are doing self-harm, who eat themselves or break [things]: I know that it’s easy to say, but these problems could be reduced A LOT if the social environment
[CS: sure]
I and when I saysocial environmentI mean also the even the family (for me it’s [part of] the social environment)
[CS: sure]
could be more appropriate.
Because when this these autistic people are doing this it’s just because they have a problem [with something exterior], they are revolting, they
So the problems, it’s not only autism, it’s because the environment is not adapted


21. EL: And the problem is
Look: if you confuse autism and the [autism] disorders, then for the people who make this confusion, autism is just something bad, period. It is but it’s all negative.
Once you understandonce you start to make ayou separate autism AND the problems coming with autism, then it’s different.
What I mean with that, is that when you consider that autism is the same thing as the disorders of autism (which even grammatically is not correct), when you think like this (like almost all the people think like this about autism), then about that kid who is at home and who is like this [severely challenged], the family or the health system and so on, they will not bother to do what I suggest, which is correcting the social environment, because they think that anyway autism is badsoautism is bad”, “the [autistic] person has a very big problem and has to be corrected, curedor I don’t know what and that’s all
They don’t admit their own problems


22. CS: To be honest, I think the field has evolved a lotNow, to my knowledge, certainly the WHO but also most of the other national governments or ministries of health would not talk about treating autismIt’s about providing care and support and promoting enabling inclusive environments
So this is, I think, quite
[EL: Yes there is an evolution, fortunately]
In my, view the fact that we talking aboutautism spectrum disorders”, even, should not be seen as asomething that leads to a narrow approach that is deficit-based
I don’t think this is the case
One thing is terminology, one thing is how we view the approach to helping or to helping improve the experiences of autistic persons andyeah
So I, to be honest, I don’t think that the term should be somehow connected to the approach
It’s not that if we useautism spectrum disorder”, then we are viewing another approach that is about treating the condition, I don’t think that is the case.


23. CS: But I see that you are using the termautismalmost as a trait, to define the trait right?
[EL: Of course :-)]
But I don’t think… – I like the concept the way you conceptualize this trait, I think it’s very interesting, and it’s something that is not been done, it could really add to the field, but why are you usingautismbecause autism is the word that has been that originated from autism spectrum disorder, originated from the definition of the condition
Autismis related to the fact that there is an impairmentat least in the international classification (in the DSM or the ICD-11)…
Why don’t you use another word to define the trait that you refer to?
I see what you’re meaning here, it’s… – in my view, because I come fromof coursethe field of mental health and I work in both fields, but, in mental health we talk about well-being, and we can talk about distress or worries, or poor well-being, and then there is for instance depression and so depression in my view is the condition as autism spectrum disorder
But then there isthe trait, for me, is well-being.
Orright, is it’s not the same, butI think you are defining a trait that you find in the general population, and that no necessarily is related to a disorder, and this, I get it
But I wouldn’t call it autism this traitbecause it creates a confusion.


24. EL: OK, I don’t find it in the general population that traitI find it only in autism…, it’sautistic population”…
[CS: Yeah (OK)…]
Of course, because it’s autism [that trait]…
It’s autism, it characterizes autistic people, and
Okay I see what you mean, and I had that this doubt also, I thought maybe people don’t understand what I mean, because anyway, anyway, autism would be like you say: something coming from the autism disorders


25. CS: YeahBecause even when you sayautistic”, if you think about how the terminology was originatedis been defined in the international classifications there is always a parameter that relates to the impairment
If you don’t have the impairment, in the ICD-11, you’re not talking about autism spectrum disorder


26. EL: This is exactly why in the first part of my document I tried to define more or less autism without any
[CS: impairment, challenges…]
defectological view, negative view,
[CS: yeah, exactly]
and the list of traits, of characteristics that I wrote, in my view, in my opinion, is corresponding to thedefectological” [usual] definition of autism, BUT with the autistic perspective, I mean with the positive perspective
Let me try to explainFor example… (I will explain and you will understand)…
For example, whenlook, autism disorders are usually defined with challenges in communication and social relations (which go together) and narrow interests and sensory peculiarities (to say it roughly), so this iswhen it is said from the medical or defectological point of view, it is negative:
these are challenges, these are inabilities, these are deficits, these are deficiencies, these are…”
and so on, this is negative
But we can describe exactly the same things from the opposite, from the positive perspective, from our perspective [of some autistic people], and sayingyes there are difficulties in relations, of course there are difficulties in communication, of course, and so what?”

It’s not necessarydisorders”, and we can explain why
I can explain, for example in the communication problems, in my case, I make so many efforts of communication (maybe you have just an idea about it), andevery day, almost every day, I have the proof, I have the evidence that the people in front of me (the non-autistic peoplenot you but most people), they just don’t pay attentionthey don’t listenthey REALLY have problems ! 🙂
They really have anattention problem”, they really don’t pay attention, they don’t listen, they don’t read, they have what I callI say to you but it’s difficult because I call it theNon-Autism Troubles”, and people don’t like it, of course when I say this, they don’t like it
But when you when you start toif people had the courage to try to think about what I call the Non-Autism Troublesthere areit’s really huge, it’s really
[CS: Yeah]
it’s really important, soto come back to what I was trying to say: in communication, it’s matter of point of view: yes, there are difficulties but these are deficits from the point of view of the non-autistic people


27. CS: Absolutely, I want to reassure you that I think I really understand your perspective, what I’m not convinced about, is the use of the term that you’re using.
Because, for instance, I’m convinced that the diagnosis in many cases is not as important as we think it is, and that many actions within the society within the family, within the care system, can be initiated, can be provided in the absence of a diagnosis
What is important is defining the recognizing that there is a specific modality of interacting or communicating or observingwhat is the from my perspectivewe define the developmental profile of the child for instance, what is the
and that can be the basis for some of the initiation of support and also to inform how the school should be adjusting or should ensure that there is some feature in our society, to be inclusive.
But in my perspectivemaybe I understand that you are not narrowing theI am thinking in terms of neurocognitive profiles… (profiles and domains and skills or competencies), I think you are not really narrowing the discourse to the brain, so I’m not sure you would go there, but in my view the trait is really about the modality ofthat, in terms ofthe way our brain function is of course very diverse, and there is a trait that relates to autism in a wayin the way the neurocognitive profile is athe feature of the neurocognitive profile in terms of what are the strengths what are the modalities of interacting and so on
And to the extent there is a disorder
But in my view, autism… (but I may be wrong), in my view autism has always been associated with the impairment, as a term.
I’m not to say that we only need to see the impairmentbut the diagnosis is made when there is a difficulty thatI thinkyes, I’m looking now at the ICD-11: “the symptom result in significant impairment”, so that is a criteria for the definition of autism spectrum disorder.


28. EL: It’s verybrainstorming”, this discussion 🙂
But I’m trying to follow you, but you said many thingsverymedicalthings, I did not follow all
But let’s try to continue
When you say the diagnosis
I come back to my distinction: when you saiddiagnosis”, for me it should not bediagnosis of autismit’sdiagnosis oh yeah I get it of the disorders
[CS: Yeah, (sure) I get it, yes]
and of course when you have the disorders which are characterizing autism, of course you should be autistic and you should…… (be autistic, that’s all).
But in my opinion, it’s impossible to diagnoseautismbecause, it’s not


29. CS: Yeah, but then, how you distinguish autistic people that have autism, and autistic people that have autism spectrum disorder, how do you call them differently? They are autistic individuals (?)…


30. EL: I thinkI’m not sure that I understood the question but I will try to answer 🙂
I think that ALL the people who have autistic disorders ARE autistic so this is simple
But on the other side, I think that MOST autistic people haveor may have sometimesautistic disorders or challenges or difficulties and so on, proper to autism, specific to autism, but not always
And when they don’t have these problems, they don’t know that they are autistic
And people around them they don’t know that they are autistic.
Look for example Elon Musk: he said that he isAspergerbut he’s a very successful man, so he does not have so many challenges
( Well in my opinion, he has some little bit crazy ideas with Mars and tunnels but it’s another problem 🙂 )
But anyway he’s successful so we cannot say that Elon Musk has autistic disordersor maybe he has, at home, but we don’t know
So I don’t know if it answers your question
For me there is not on one side people who have autistic disorders, and on the other side, people who are (just) autistic


31. CS: But I think it’s similar for many other conditionsIf you take for instance dyslexia
Many of uswe are not all the samein our in the way that we learn to read or
[EL: I have a little bit of dyslexia now that I did not have in the past, and it’s depending if I am upset or not, but in the past I had no problem at all, and sometimes I cannot even write when I’m really upset…]
Yeah, so I think it’s the same, to a certain extent, I mean there is a variability of course, and the word dyslexia is used only to recognize that in certain cases this variability in the way that we are able to to read and so on andit’sin certain cases, it creates an impairmentso the impairment is the defining feature that distinguish between persons that might may struggle a bit but may not have as severetheir ability may be good enough for them not to be feeling that there is a challengeand when there is a challenge, thenand of course there is a fine line, it’s not so easy to define if / when there is a condition and when there is not
But I see the same for autism
So I think you’re using autism to define a trait here but you’re using the term of the conditionso that creates confusion for me
Because when you sayautism spectrum disorderthere is an impairment, and I think autism has been utilizedin my knowledgeto define the condition, to define the cases where there is an impairment
So you couldyou could probably createinventevenanother word to define the trait
But I’m not convinced that we should useautism”, or maybe yes, I don’t know, but this is my confusion
Maybe just to come to the question: the conceptualization of autism as distinguished from autism spectrum disorder: is there anyanything written, is there any association that is proposing this, is it really your conceptualization yeah?


32. EL: I don’t know (about) others, andso either I’m totally wrong
[CS: No…]
or maybe it’s just a problem of using the wrong word, I meanautism”, which should be another word


33. CS: To be honest, I would not use the same wordyeah
Or maybeyeah
Because maybe we will go there
Maybe you’re right, and maybe we should use the word, not to define the condition for anything
Maybe we should use thedyslexiato define the trait and then, say that there is adyslexia disorderwhen there is an impairment
But to be honest I’m not so
I don’t know
Iat this stage, I


34. EL: It’s difficultBut, lookonce again, I want to try to explain again
Look, what I think iswhen I listen to you I think that youyou are a doctor and you work at the WHO and you have a medical approach of course, of course
So, like you said, in your opinion, the wordautism” *means* anywayautism disordersbecause


35. CS: No, I don’t say that, we can change itIt can be changed in the future, but nowadays it will create some confusion
I’m not sayingI like, to be honest, I like the concept, I like the utilization of the word, but from another perspective I’m also concerned about keeping the current terminology of autism spectrum disorder
I would move away from that, I would not usedisorder”… would you still
I mean, in many cultures, disorder has a very negative connotationIt may not be the same in English, right


36. EL: I agree with younow, in fact, look: we have two problems
We have the problem with the wordautismwhich is too muchchargedwith thedisorders”, and I admit that it’s not so so easy, but I I have my idea about it and I will try to say it after
And [we have] another problem (I found that it’s very right what you say), that the worddisordersis not correct
Maybe I wrote it in my document, look: if you consider that autism has something to do with Harmony and coherence and ORDER, and I can tell you that I haveit’s not a problem butI have an *obsession* for order, and I’m not the only one, I think it’s for most autistics: they wantwe wantorder, I mean we want the words to be used like in the dictionary, we want Justice, we wantand so on, and you know about the kids who align their toysbecause it HAS to be in order, it’s extremely important
When I enter somewhere, [like] in a restaurant I can notice all the things which are not aligned or notand even my friend, who is not autistic, he has been living with me for seven years, and now he’s like me, he’s not autistic, but he tells mebecause of you now I have…” [that obsession]…
It’s not a problem, it’s a quality because he works in five star hotels here (in Hilton and very high luxury hotels), so for him it’s very easy to climb the ladders, because he remarks all the problems and all the details, indirectly thanks to the qualities of autism.
And here in the flat, I rent two rooms, and thanks to my obsession for neatness and details the people [the paying guests, the travellers], they make very good comments because all is clean and so on: this is thanks to autism of course.
Well, sodisorderit’s really nonsense, it’s really nonsense to use the word disorder because it’s the contrary, in my opinion, it’s a sort of rigidlike acore”, a core which is very very *consistent* and very harmonious inside but which isclosed.
And the more the autistic person starts to open to the rest of the world, then it starts to flourish like this [blossoming / opening up]…
And but it’s still veryit has to be very harmonious


37. EL: It’s complicated because there also there’s also another problem, it is that for the autistic people, to adapt to the exterior world (which isfrom my point of viewwhich is just a big mess :-)), for us to adapt, most of the times we have to conform ourselves, toformat” [to getformatted”], to make concessions, to make arrangementsand if you consider that our way of being is like things which are very very clear and very straight, it cannot work in a society where you have to [bend things, circumvent, fake etc.]: you cannot do like this [straight / direct / clear], you have to do like this and like this [warped / twisted]…
So, the autistic people, when they want to survive and to get a job and so on, in the non-autistic world, they have to learn these things which are some sort of… “vicesor things like this
They cannot just come to the hiring interview and sayoh I don’t like your tie”: it’s not possible, so they have to learn it
So in my opinion they have to learn what I call theNon-Autistic Troubles”, but it’s not very nice to say this, but they have to learnlet’s say the social conventions, and sometimes they learn it very well but they learn it with a autistic way, which is a very perfectionist way, and sometimes they are evenlike we say in FrenchIls sont plus royalistes que le roi” (“They are more royalist than the king”), it can be sometimes really horrible, really
So it’s important to know that, because sometimes people tell usah but autism is not this or is not that, because I know an autistic man who does…”: no, he’s not doing autistic things, he’s doing non-autistic (or social) things that he or she has learned and that’s all: it’s not autistic.
But it is a side subject.


38. EL: [Now] about the disorders: yes it would be a good idea
Look there are two problems, I think that solving the problem of the word disorder is a very big problem, yes it could be another termwhy not consulting the associations, the organizations of autistic people in the world, asking themhow you prefer to be called?”: I’m not sure about the answers, what it would be, but why not, at least trying to ask them, because I don’t haveright nowI don’t have any idea (maybe tomorrow),
and the other problem is, what you say, that the word autism isanyway is charged with deficiency which explains why people don’t get what I try to explain.


39. CS: Notdeficienciesbut yeah
[EL: “deficit”…]
I think this isto be honest, in the context of neurodiversity, this term ofautismis being repositioned to see also the positive aspects of it, but I don’t know, I see that there might be some confusion where we need toin a certain way there is a pragmatic need to define when there is a challenge
[EL: Of course…]
that there is a challenge that is severe enough
[EL: Of course…]
to give entitlements to service, right?
[EL: Of course.]
Because we also have these issues with making choices in the ????? system and the finances arethere is a need to define what are priorities of Investments, right?
So we need to define, where, which, who is deserving to have this amount of these services, and who needs to have a more narrow access to services


40. EL: There is another problemI’m just realizingit is that given that people mixthey confuseautismandautism disorders”, I mean, people who are autistichow to sayautism is something and when you are autistic you can have very few problems or you can have big problems, so, okay, this is autism, and the disorders is something that goes with, it’s collateral to autism.
But the problem is that with the all the trend of neurodiversity and so on, there are so many people now who discover that they are autistic, but in all thosenew autistic people”, not so many have disabilities or or problems or challenges, but they are applying, they are going to the doctor [the psychiatrist] to have a certificate to receive money and also to have access, cards priority cards, and so on
And I think it’s really not fair
I had [it] too, when I was in France I had anadult disability allowance / benefit”, but I think it’s not fair because it’s confusing everything, and thatlike you saiddo they really deserve it ?
Not so sureI think that there are autistic people who really deserve a lot of care and a lot of


41. CS: Yeah they may requirethey should maybe have entitlements, but what specifically, should also be dependent on the severity of the challenges, right, so this is important


42. EL: It depends of, yes what you say, the severity of the challenges: it’s not because you are autistic that automatically you
[CS: Yeah, exactly]
Anyway there are


43. CS: Yeah, there are ways to compensate, rightI have this severe challenge with orientation but with my mobile and asking people I always get around well, so it’s not that I should be receiving something, as long as I’m able to compensate, for the deficit that I have, right
Sobut Ito be honest, I willI meanthis is interesting and I reallythis is a field that is evolving so much, and where I think we have a lot of questions, I’m not sure we have a straightforward approach, I see your point that


44. EL: Butfrom the
Let me know, please, if I’m wrong or right: from what you said the last 20 seconds, from the tone and what you said, I think that it is to prepare the fact that youyou have some other things to do, something like this :-)…


45. CS: No, yes
[EL: Just to know if I am if I am good or not at guessing…]
Yes, yes, sorry about that, I have something related to the closure of the year that I need to do, but I take this conversation seriously, I mean because it’s somethingI mean, I give you an example, yesterday I was asked to share some reflections internally within WHO on neurodiversity, I have done a lot of studying and reading over the past a few months and I’m not resolved (???), I don’t think we are resolved around an approach that is good enough to reflect the complexity of how we define autism spectrum disorders, how we define autism, how we define neurodiversity


46. EL: Why not making some sort of meetings with brainstorming and some specialists
[CS: Yeah, yeah]
(including myself if possible :-))
[CS: Sure]
of various fields, and
Because [now] we are two persons, we are trying tobut with other people it could be
[CS: Sure]


47. EL: And just to finish, one thing, I come back to the wordautism”, and I understand that anyway for you it’s too much medical and disorders and so on, and and maybe I should read more about the origins of the
The origin isKanner or Asperger who describedAutisten” [in German] and so on
ButI’m sticking to my point which is thatI agree with the fact thatautismis characterized by those difficulties with social interactions and so on,
BUT, “per se”, in itself it’s not necessarily a disorder
[CS: yeah yeah]
It is a disorder when it enters in conflict with the rest.
I mean, for example thenarrow interests”… or God knows what, for example the difficulties of social interactions, in my point of view, it’s good!
It it’s a problemof courseto survive in society, but it’s good when you consider that it helps what I call the auto-protection of the naturality of the people.
And I even consider that the autistic people canif there are more and more and more [autistic people], there will be, in the countries, a sort of threshold where the society will have to do something, and maybe they will understand that it’s not just putting autistics under a dome and feeding them with medicines
It won’t work, they will have to correct [the system]

In my opinion autismmaybe I’m wrong but in my opinion autism is something useful to force society to be less artificial and more natural, and I’ve read that Tony Atwood said something like this in one of his books, I don’t know because I never
So it’s very in my opinion it’s very


48. EL: And another last thing because you have some things to do but, the last thing: when we sayoh this autistic person cannot speak so it’s a big problem because he / she cannot speak”…
Look, there are many people who don’t speak they are not autistic, they don’t speak, they are deaf, and so what??
They there are many ways toto work
[CS: But it’s an impairment.]
It’s a problem, it’s difficult, but it’s still possible to work and toand honestly, I would love to live in a building with only deaf people because🙂 You know what I meansometimes, most of, 90% of what people say istotallyin my opinion, is totally uselesssometimes it’s better to be [“closed”]… soit’s a matter of point of view.


49. CS: Yeah yeah yeah, no Iyeah Iokay, it makes me reflectand I just want to correct something, that I don’t want to say that autism is about deficit onlyI just see that
[EL: Of course]
using autism in the broader sense, and havingautism spectrum disorderscan create some confusion but maybe we’re already there, I don’t know, I need to reflect a bit more about this
Maybe the fact that the neurodiversity movement is using autism in such a broad term maybe they’re already using it in this way, they usingautismin the broader way to conceptualize thatis soI don’t know, I need to think about itI don’t know whether it is a good thing or not or


50. EL: Let me try please five minutes more, let me try another attempt to make it understand better 🙂
For me as a autistic person and for the colleagues who have mylevel” (so to say) we say that we are autistic, we have absolutely no problem about being autistic, the *nature* of being autistic.
There are those who negate their own troubles [or impairments], their own difficulties, (not many), and there are those whoon the contraryadmit that they have many difficulties, but it is something different, it’s distinct, it’s different [autism, and the difficulties]…


51. EL: And anothertwo things: for example before 2013, I did not know that I am autistic, and I had tons of problems, and
When I learned that there is a name (at that time it was called Asperger syndrome) and when I saw it : [wow], it was reallyTHE Revelationand it was not negative for me.
On the contrary it was a label it was an explanation, and when I read the description of Asperger syndrome, I saw very well that it was negative, but not for me, even when I discovered it, because I knew, I felt, that I was notthat I was not *wrong*, that I had my point of view, and that from the social side, from the non-autistic point of view, they made a label calling it Asperger or Autism or God knows what
But for me it’s just a label


52. EL: Anda last example
For example, the homosexual people: in the past homosexuality was seen as as disease and so on
[CS: Yeah]
Andlet’slet’s go back in the past, like, let’s say 100 years in the past, and you take an homosexual person, and the system will think that he has a disease and so on
So now you take the same person, let’s take for example Alan Turing, he’s very famous and he was homosexualLet’s take Alan Turing, and you put this guy nowhe would sayyes I’m gay, and so what ?”
(I think that maybe at that time, even at that time he was saying that)…
And so what ??
[CS: Sure]
So, what I mean is that from the point of view of the system they would tell himah you have the gay diseaseorhomosexuality disorder”, yeahhe has the homosexuality spectrum disorder” (HSD) :-)…
And from HIS point of view, he would sayyeah I’m gay, I like men, I like these things, and so what ??”, that’s all
So maybe it’s not a very good comparison, but from my point of view of autistic person: “I am autistic, YES, I have so many problems of communication with other people, YES my focuses are very narrow, or strange, andYES, sometimes I can focus on a subject during one weekand so what ???…”


53. CS: Yeah so maybe the other way of approaching this could be that we use the termautismto define the broader
[EL: the nature…]
range (the nature), and then you say
[EL: the disorder, the problems…]
he’s an autistic person with difficulties in da da da da, with severe impairments in…”
[EL: yes, specific to autismyes of courseI think that it’s…]
so that would be a clearer way of defining things.


54. EL: Yes, it’s essential in my opinion, it’s really essential to really try toeven if it’s not cleartry toI mean, like an experimentationto make a really clear separation, a barrier betweenautism” (trying to define it, but the first part of my text would help a lot), and the other side, all the usual things: the disorders and so on.
[CS: Yeah]
And and try not to mix both, and then little by little you will understand what I mean, that it is really something different.
But maybe for someone who is not autistic maybe it’s not easy to see.
I think that my textmaybeif you read it (the first part about autism), if you read it again, maybe it will become more clear


55. CS: YeahSo IOkay now this is I mean this is useful, thank you for taking the time to share this with me, and to explain
I willI willI will be thinking about how
Because this is beyond the fact sheetso the fact sheet is one, but I think it’s beyond that
So I canI can see howI’m not sure to be honestYou know WHO soit’s not that I can take my idea and redraft the definition of autism myself, but the minimum that we can do is possibly to be careful with sticking to the termautism spectrum disorders”, or maybeautism spectrum conditions”, when referring to the ICD-11 spectrum of severe conditions


56. EL: Isorry to interrupt youI think that the WHO is about health and health problems, and very probably the WHO does not have toeven to try to define what is autism (autism)
[CS: Yeah]
because, you see even ourselves together, we we cannot really manage to to
So why not just takingautismout of the situation, and the WHO would just care about what they have to do, I mean thedisordersor the challenges etc.


57. CS: To be honest, I think this is an old version of WHONowadays we’re not focusing on disorders, it’s also about wellbeing, it’s about developmentSo it’s about promoting healthSoso it’s a bit beyond that


58. EL: Yes but anyway, with my theory, autism has nothing
[CS: Yeah you’re rightI understand…]
has nothing to dohas nothing to see with a health problem
[CS: sure sure, suresure]
so, I meanas an autistic person… (I cannot say that my life is an example for all but) as an autistic person if there is no problem with the neighbours, and if no one touches me in the back, (then) I don’t have any autistic disorders
If you put me in France (I don’t want even want to imagine it)…
Sothe disorderyes the disorders they are existing and really they are
Let’s try another word: the difficulties I preferdifficulties”, the challenges or difficulties specific to autism, they are clearly existing and it’s clearly a big problem, and it has to be addressedof courseand if the WHO is going more in the direction of the global approach, the social approach and all what I said (environment and so on), it’s very good
And changing (replacing) “disorderwith another word it would be good also.
But this is one thing, and it is about the problems and the challenges and the health as wellbeing and so on, okay
[CS: yeah]
but it is not autismIt is (I know that the difference is subtle, it’s difficult) but (with) “autism in itself”, there is no problem.


59. CS: Yeah yeah yeahOkay, let meI don’t promise that it..
Yeah yeah, I will think about it andand possibly it’s good the suggestion that we can also consult more broadly.
[EL: yes, and…]
and hear perspectives


60. EL: The problem
Concretelyconcretely, the problem is that when… (I told you) when I try to explain such things to the French things, sometimes they tell meoh but on the website of WHO it’s written that autism is the same (thing as autism disorders),
[CS: yeah yeah, sure sure]
so, I cannot argue against this
SoI canlook, what I can do: I can tell themokay, on their fact sheet there is a confusion and…”, but it’s not enough convincing.
I can’t tell thembut look at the ICD exact definition”, I mean the medical definition: it’s okay, there is no problem it’s not written (…), there is no confusion, I mean at least in French or in English (I don’t remember),
[CS: sure sure sure]
there is also the problem of translations
But the problem is that people are not always of good faith, and they will say that there are two contradictory things, there this page which saysthey don’t mention autism but just the disorders, and another page for more mainstream public which says autism is ASD, so thank you Mr Lucas but goodbye, because even the WHO says what we say, sothen it’s very difficult for us to try to explain that difference whichin the document I tried to explain that it’s is so important to understand this distinction for so many reasons
And the first reason is to understand the qualities of autism, of course.
[CS: sure]
becausethe qualities of a disorderdoesn’t mean anythingit’s so obvious


61. CS: yeah yeah yeahNo I get it
Yeah yeahThanks, I promise I will think about it, and I will consult internally as well, as it’s good that we should consult more broadly also
[EL: You can invite me maybe in meetings sometimes…]
Nowadays it’s a long time that we do not organize in person meetings, we are relying more more
[EL: No, I mean, notin person”, I don’t want toRemotely, of course.]
Sure sure sure yeah yeah yeah I know I think we should do it and consult about this issue of terminology
It’swe are a bit tight with terminology because the WHO isthere is a separate process around the ICD-11, right, so that is a very separate process
But anyways I think it’s good to consult and to hear perspectives and then we can influence processes externally, not to say that a consultation can change the ICD-11 now, but but certainly our thinking


62. EL: Like I told you, in the ICD-11 definitions I don’t see any problem
[CS: Yeah]
No, it’s the general pages whichwith a good intention, to remove disorderbut in fact it creates a problem and no one thought about it :-)…
[CS: (laughing)]
but I’m trying to explain


63. CS: Sure sure sureall rightthank you so much!


64. EL: Thanks to you!


65. CS: I really appreciateand all the efforts to let me understand it 🙂


66. EL: It’s difficult, it’s difficult, it’s not because of you or because of me, it’s because it’s two different worlds 🙂


67. CS: No, let’s not make it 🙂 No, let’s bridge the worlds 🙂 🙂


68. EL: That’s why I created the Organization of Autistan
[showing a little flag of Autistan]
which is to try to (which aims to) make bridges between the two worlds
It’s difficult, but with people of good faith it’s possible to advance, to understand better.


69. CS: Yeah 🙂 I amI don’t know I think of myself as aII don’t like to speak, but I I like to listen
So II’m not sure I can changeI mean, I haveI don’t knowI justI’m sincere when I say that I appreciate the opportunity to listen to you 🙂


70. EL: I believed it! 🙂 I believed it

CS: (laughing)
All right

EL: Thank you

CS: Thank you so much

EL: Good night

CS: Bye bye

EL: Thank you

CS: Good night



3.2. Attempt to summarise our meeting using ChatGPT, and addition of our comments after further reflection

CS = Chiara Servili (WHO, World Health Organization)
EL
= Eric L. (Autistan Diplomatic Organization)



1. Introduction and Evolution of Thoughts
EL expresses gratitude for the meeting, highlighting the evolving nature of his thoughts on autism since their last meetings in 2014 and 2015.

EL emphasizes the problem of confusion betweenautismanddisorders of autism.


2. Terminology Challenges and ICD-11 Legacy
CS acknowledges the evolving field of autism and discusses the terminology challenges, mentioning the legacy of the ICD-11 classification.

CS highlights the difficulty in moving away from the termautism spectrum disorders.

Key sentences:
[we] WHO for instance in the broader field of mental health, we are avoiding talking about disorders, we are using mental healthconditions”, just because of the negative connotation of disorders per se.
But yes for autism it’s difficult also to move away fromautism spectrum disorders”, there is no other alternative terminology that has been proposed to define the condition in alignment with ICD-11.

Comments on the item 2:

  • While it may be beneficial to explore alternative, less stigmatizing terminology forAutism Spectrum Disorders” (ASD), it’s important to clarify that this discussion is ancillary to our primary focus in this letter.
    Our main objective is to delineate the distinction betweenautismandautism spectrum disorders,” emphasizing that autism itself is not inherently a disorder.
    However, this clarification should not be misconstrued as an attempt to downplay the significance of ASD.
  • Adjusting the terminology fromautism disorderto simplyautismin an effort to mitigate negative connotations poses a challenge to our intent.
    By blurring the distinction in this manner, there’s a risk of perpetuating or amplifying the prevailing confusion betweenautismandautism spectrum disorder.
    Therefore, while the exploration of alternative terminology remains a valid consideration, it must be approached with caution to avoid inadvertently undermining our primary message.

3. Neurodiversity Perspective and Terminology Dilemma
CS explores the tension between the ICD-11 legacy and the value of the neurodiversity perspective.
CS asks EL about his perception of the neurodiversity movement, noting similarities in challenging perspectives on deficits and difficulties.

Comments on the item 3:

  • While the concept ofneurodiversityis interesting, we find it unnecessary for elucidating our discussion.
    Furthermore, it appears that this concept may introduce complexity or ambiguity when attempting to differentiate between autism and autism spectrum disorders.
    This complexity arises from the implications and controversies associated with the concept, as well as the challenges in drawing parallels with our assertions.
  • In essence, we contend that our message is clear and comprehensible without the need to incorporate additional concepts that contribute little to our discourse and potentially exacerbate confusion. Therefore, we advocate for a straightforward approach that minimizes unnecessary complications and limitations.

4. Autism Beyond Neurology
EL expresses support for neurodiversity but doesn’t use the term due to a belief that autism is not solely neurological.

EL views neurology as a tool between one’s true self and the world, expressing concerns about reducing autism to a purely neurological aspect.


5. Challenges of Neurodiversity Movement
EL acknowledges the positive aspects of the neurodiversity movement but points out its tendency to oversimplify the challenges, particularly for severely autistic individuals.

EL highlights the need to distinguish between autism as a natural difference and the difficulties or disorders associated with it.


6. Autism as a Human Difference
EL asserts that autism, in itself, is not a problem but a natural difference with qualities and defects.

EL distinguishes between subjective and objective disorders, acknowledging the challenges while emphasizing the importance of recognizing autistic qualities.


7. Blocking Autistic Qualities
EL notes that when focusing on an autistic person’s defects in an incorrect environment, their positive autistic qualities are often blocked, hindering development.


8. Right to Decent Life
EL emphasizes that people do not have be geniuses to have the right to live a decent life.


9. Heterogeneity and Variability in Autism
9a.
CS resonates with EL’s recognition of the variability in autism, acknowledging the extreme heterogeneity in challenges and differences.

9b. CS shares concerns from caregivers about potential negative consequences if WHO moves away from ICD-11 language towards neurodiversity.

Comments on the item 9:

  • 9a. We believe that the issue of very large differences inlevel of social functioningin autism is irrelevant to what we are trying to explain.
    Even if this range were 100 times smaller, it would have no impact on our main point, which is simply to convey that autism is not synonymous with the disorders, difficulties, or challenges that characterize it, regardless of their nature, variability, contrast, or any other defining factor.

  • 9b. Parents harbor apprehensions towards certain approaches, such as the one advocating neurodiversity, or those that tend to downplay issues by asserting thatautismis merely a benign human variation, while inadvertently equating it withautism spectrum disorders.
    This fosters the misconception that autism spectrum disorders themselves are innocuous differences, an assertion that is clearly flawed.

    • This confusion underscores the critical importance of distinguishing between autism and autism spectrum disorders.
      By clearly delineatingautismas a natural human diversity andautism spectrum disordersas clinically significant challenges, we acknowledge the reality and gravity of the issues while simultaneously advocating for the recognition of the strengths and qualities associated with autism.
      Parental concerns stem from this pervasive confusion in understanding.

10. Balancing Recognition of Diversity and Impairments
10a.
CS appreciates EL’s recognition of diversity but underscores the concerns of caregivers who fear losing entitlement to essential services if the focus shifts towards neurodiversity.

10b. CS acknowledges the variability in autism and the challenge of balancing the concept of natural variation with the recognition of severe impairments.

Comments on the item 10:

  • 10a. Regarding autism, the concept of neurodiversity falls into a common trap: it fails to differentiate betweenautismandautism spectrum disorders” (or the challenges associated with autism).
    By treating these as a unified entity, neurodiversity inadvertently diminishes the significance and severity of the disorders when attempting to demonstrate that certain neurological variations are merely differences and not pathologies—a process commonly referred to asdepathologizingautism.
    This conflation poses a significant concern for parents and caregivers, as it may obscure or disregard the genuine needs of autistic individuals, while these caregivers require essential support to address these challenges.

    • Hence, our letter refrains from invoking the concept of neurodiversity.
      We assert that it is unnecessary for our arguments, and moreover, its tendency to blur the lines between autism and autism spectrum disorders contradicts our objectives.

  • 10b. Contrary to popular belief, there is no inherent conflict between acknowledging autism as a natural human variation and recognizing the profound impairments it may entail.
    As we elucidate, these are distinct yet parallel concepts, not opposing ends of a spectrum.
    Thus, recognizing autism as a natural variant, akin to being left-handed, does not negate the presence of associated difficulties.

    • These challenges stem from societal structures ill-equipped to understand and accommodate autism, thereby exacerbating the struggles faced by autistic individuals.
      Emphasizing this distinction is crucial for understanding autism comprehensively and ensuring appropriate support for those affected.

11. Fact Sheet Terminology
CS explains the change in the fact sheet’s terminology fromautism spectrum disorderstoautismdue to its intended audience.
EL expresses concern about the shift and its impact on public understanding.

Key sentences:
I want to clarify first thefact sheet”.
The fact sheet was written with onlyautism spectrum disorders”. It was a fact sheet on autism spectrum disorder.
The communication team perceived that talking about autism spectrum disorder was not good in a fact sheet because the fact sheet is not a technical document, it’s supposed to be a document on the website for the lay public [i.e. non-professional public], so for the people, not for not a technical document.
So they were arguing against usingautism spectrum disorderand they saidwe need to use autism, this is the word that the people uses”, and so it basically it was changed, it was a fact sheet on autism spectrum disorder, it became a fact sheet where autism was used, and I try to explain the beginning that
the fact sheet was written withautism spectrum disordersinstead ofautism”.
So I can understand your point. I think what our communication team has been trying to do is something similar to what has been done for the mental health field.
As an expression of recognizing the concern of the public about using some words, some terminology that has a negative connotation, we have been moving away from usingdisorders”.
So instead of sayingmental disorders”, [we say] “mental health condition”.
So there was an intention to go in that direction here with this fact sheet and avoid [to] usedisorders


12. Impact on Public Perception
EL highlights the prevalent confusion betweenautismandautism spectrum disordersin public perception, especially in France.

EL underscores the importance of distinguishing between autism as a natural variation and the challenges associated with it.

Key sentences:
I don’t know if you had the possibility to read really all because my text was really long, but if you manage to read all, then you should really understand that it’s really a big problem if you confuse autism (a human variant or variation as you said) and the problems that go with it.
It’s a very big problem


13. Comparing Autism to Myopia
CS draws a parallel between myopia as a human variation and a medical condition, suggesting that recognizing difficulties doesn’t negate the variability in autism.

CS emphasizes the need for a name that doesn’t stigmatize and highlights the importance of environmental adjustments alongside support.

Comments on the item 13:

  • In our view, it is not appropriate to draw comparisons between autism and myopia because, unlike autism, myopia lacks any positive qualities.
    Myopia, to us, is not ahuman variationdevoid of inherent defects.
    As a disabling condition, myopia can be compared to autism spectrum disorders, but not to autism itself.
    This parallel does not aid in understanding the distinction between autism and autism spectrum disorders.

14. Challenges in Distinguishing Autism and Disorders
EL shares the difficulty in making people understand the distinction between autism and autism disorders.

EL mentions that even within autistic communities, there is resistance to differentiating between the two.


15. Flat Earth Analogy
EL employs the Flat Earth analogy to explain the challenge of making people understand the distinction between autism and autism disorders.


16. Defining AutismLack of Clear Definition
CS asks EL about the definition of autism.

EL admits the difficulty in defining autism and shares his unconventional opinion that autism is an auto-protection mechanism for natural harmony.


17. EL’s Philosophical View of Autism
EL delves deeper into his perspective, seeing autism as an auto-protection of natural harmony or harmonious naturality, acknowledging the philosophical nature of his view.


18. No Clear Marker for Autism
EL addresses the absence of a clear marker for autism and stresses the coexistence of mild and severe forms of autism, with challenges proportionate to the level of autism nature.

Key sentences:
you say that in autism, or in the autistic disorders, it’s difficult to find a marker, and to find a point where you can sayAh, now (here) there is autismand under this (point) there is no autism”: that’s rightbut for me it’s not a problem because… (you see my two hands [on the screen]), for me it’s two things really differentthey go together, like my two hands they go together, but these are two different hands


19. Challenges of a Mild Autistic
EL illustrates personal challenges as a mild autistic, highlighting difficulties with bureaucracy and social interactions, emphasizing the subtlety of challenges.


20. Environmental Influence on Challenges
EL discusses the environmental component of challenges, noting that disturbances in coherence and harmony, rather than sensory factors, affect autistic individuals.

EL suggests that appropriate social and family environments could significantly reduce challenges and behaviors or situations harmful for the autistic persons.

Key sentences:
when you say that there are some autistic people who are doing self-harm, who eat themselves or break [things]: I know that it’s easy to say, but these problems could be reduced A LOT if the social environment,
I and when I saysocial environmentI mean also the even the family (for me it’s [part of] the social environment),
could be more appropriate.
Because when this these autistic people are doing this it’s just because they have a problem [with something exterior], they are revolting, they
So the problems, it’s not only autism, it’s because the environment is not adapted


21. EL: The Problem of Confusion
The problem arises when people confuse autism with autism disorders. This leads to a negative perception of autism, where it is seen solely as something bad. However, separating autism from the challenges associated with it allows for a different understanding. If autism is considered synonymous with autism disorders, there is a tendency to view it as entirely negative. This misconception hinders efforts to correct the social environment, as the focus remains (on the persons), onfixingthe perceived problems rather than creating an inclusive atmosphere.


22. CS: Evolution of the Field
The field has evolved, and current approaches emphasize care, support, and inclusive environments. While the termautism spectrum disordersis used, it shouldn’t be linked to a deficit-based approach. The terminology shouldn’t dictate the perspective on helping autistic individuals.


23. CS: Concerns About Terminology
You seem to useautismto define a trait, which I find interesting but potentially confusing. The field traditionally associatesautismwith a disorder originating from autism spectrum disorder. Instead, consider using a different term for the trait you are defining to avoid confusion.

Key sentences:
I like the concept the way you conceptualize this trait, I think it’s very interesting, and it’s something that is not been done, it could really add to the field, but why are you usingautismbecause autism is the word that has been that originated from autism spectrum disorder, originated from the definition of the condition

Comments on the item 23:

  • For us, it is entirely possible to retain the termautismto refer to what you calla trait” (which we see asa nature”), without loading the word negatively or associating it with the disorders, difficulties, and challenges that may accompany autism.
    Indeed, one can consider thatautismrefers to a list of characteristics and peculiarities which, when analysed outside of any social context or judgment, are not necessarilydisordersorproblems,” and often appear more as qualities.
    This is what we attempted to convey in section 1.1.2. of our letter, the sub-titles of which are listed here for reference:


    1.1.2 “Mental, sensory and behavioural characteristicsof autism (description without a defectological approach)
    Autism consists of (among other things):
    A) Not seeking / not wishing interactions with the social environment (i.e. – usuallyunfamiliar people, in a context often perceived as absurd / worrying / hostile or simply uninteresting),
    which therefore obviously leads todifficultieswhen these interactions are socially imposed or expected,
    which does not encourage the development of communication (including language, verbal or non-verbal),
    which makes it difficult to understand or perceive:
    the intentions of others (and all the more so if they are not expressed clearly, orworseif they are hidden or disguised),
    — “social conventions(and all the more so because they are rarely written down, and are highly variable and debatable and therefore unreliable),
    humour, irony, innuendo, “saying one thing to mean the opposite”, etc. ((all the more so because these ‘normalmechanisms are almost always ‘complexificationsor misappropriations/disguises/perversions of reality),
    abstract or symbolic presentations of reality (because they differ too much from reality to appeartrueor to allow the thing symbolised to be recognised);
    –> Why would this be adisorderorpathology”? It seems more like a quality
    B) Not being interested insocially normalpreoccupations,
    but on the contrary, being interested in other things;
    –> In what way would this bea disorderora pathology”? It seems more like a quality
    C) Not being interested in whatothersthink (including what they think of us),
    and therefore not to act according to a possiblejudgement by others(cf. the very strangely namedTheory of Mind”) ;
    –> In what way would this bea disorderora pathology”? It CAN or SHOULD be a quality
    D) Having a great capacity for focus (i.e. coherent attention) and perseverance for subjects deemed interesting ;
    –> How would that bea disorderora pathology”? It seems more like a quality
    E) Noticing anomalies or errors spontaneously and easily (what is generally referred todefectivelyasexcessive attention to detail”),
    being disturbed by them (because they are almost alwaysunnatural”, erroneous, incorrect, absurd, unfair, toxic, harmful, destructive, etc.),
    needing to correct these anomalies (i.e., in particular, to order, align, or improve coherence and harmony);
    –> In what way would that bea disorderora pathology”? It seems more like a quality
    F) A need for order, coherence, and harmony (including, for example, “completeness”, which explains theend-to-endnature of certainautistic endeavours”);
    –> Why would that be adisorderor a ‘disorderor a ‘pathology’? It seems more like a quality
    G) Being very sensitive to disturbances, particularly sensory disturbances (all the more so as they are generally unnaturalcf. the notion ofSocio-Generated ((Impairments)) Disturbances”),
    and also to non-sensory disturbances, for example of thefoodtype (generally caused bydenaturedfood);
    –> Why would this be a ‘disorderor ‘pathology’? It seems more like a quality (to protect oneself)…
    H) Striving for accuracy and precision, i.e. wanting to get closer to the truth;
    –> In what way would that bea disorderora pathology”? It seems more like a quality
    I) Respecting things that are deemed reliable / true / righteous (and all the more so when we perceivethe social worldas unreliable / untrue / unfair),
    and not wishing / not tolerating the external imposition of modifications to these things deemed reliable (and all the more so when no justification is provided or understandable);
    –> How would that bea disorderora disorderora pathology”? It seems more like a quality
    J) An ability to perceivegeneral trendsor the deep structure of things (which is logical if you are in tune with harmony and truthand if you are not too much disturbed bysocio-generated disturbances”).
    –> In what way would that bea disorderora pathology”? It seems more like a quality
    K) Havingconsequentlybehaviours or activities or interests whichobviouslydo not correspond to what is expected by thesocial normsin force at the time and place of the situation,
    including physical manifestations or movements which arenot normal” ;
    –> In what way is this adisorderorpathology”?
    Note: this list is incomplete, imperfect, and insufficiently ordered (due to lack of time).

  • If the termautismis currently primarily associated with the notion ofdefect,” it is because of the confusion between autism and the defects associated with it.
    For us, there is no problem, no contradiction, in discussing one thing on one hand, and the negative or problematic aspects of that thing on the other.
  • In other words, the current defectological connotation of the termautismresults from the confusion we are striving to dispel.
  • Given that this confusion is absent from our mindset, we do not have the automatic reflex of necessarily attaching the notion of defect to the wordautism.
  • To better understand, perhaps we can attempt a comparison with racism. In an ancient, racist society (during the era of African enslavement by Europeans, for instance), the termAfricanwas certainly automatically associated with anegativenotion.
    However, once it was understood that this was obviously entirely erroneous, there was no longer any reason not to use the termAfrican”, because being African is no more negative or defective than being autistic.
    (This comparison has its limitations and should be taken carefully and appropriately, but it may assist in comprehension.)

24. EL: Trait Specific to Autistic Population
The trait I describe is specific to the autistic population and not found in the general population. It characterizes autistic individuals. The challenge lies in ensuring that people understand this distinction and don’t associate autism solely with its disorders.


25. CS: Terminology and Impairment
The terminology, includingautistic,” often originates from classifications that involve impairment. The ICD-11 ties autism to impairment. The concern is about the use of the termautismwithout the qualifierspectrum disorders.


26. EL: Defining Autism Without a Deficit-Based View
Attempts are made to define autism without a deficit-based view, emphasizing positive perspectives. Communication challenges can be viewed differently, with an understanding that non-autistic individuals may contribute to these challenges due to their ownNon-Autism Troubles.

Key sentences:
in the first part of my document I tried to define more or less autism without any
defectological view, negative view,
and the list of traits, of characteristics that I wrote, in my view, in my opinion, is corresponding to thedefectological” [usual] definition of autism, BUT with the autistic perspective, I mean with the positive perspective
Let me try to explain… (…)
For example, whenlook, autism disorders are usually defined with challenges in communication and social relations (which go together) and narrow interests and sensory peculiarities (to say it roughly), so this iswhen it is said from the medical or defectological point of view, it is negative:
these are challenges, these are inabilities, these are deficits, these are deficiencies, these are…”
and so on, this is negative
But we can describe exactly the same things from the opposite, from the positive perspective, from our perspective [of some autistic people], and sayingyes there are difficulties in relations, of course there are difficulties in communication, of course, and so what?”

It’s not necessarydisorders”, and we can explain why
the non-autistic people (not you but most people), they just don’t pay attentionthey don’t listenthey REALLY have problems ! 🙂 [i.e. flaw, defects]
They really have anattention problem”, they really don’t pay attention, they don’t listen, they don’t read, they have what I callI say to you but it’s difficult because I call it theNon-Autism Troubles”, and people don’t like it, of course when I say this, they don’t like it
But when you when you start toif people had the courage to try to think about what I call the Non-Autism Troublesthere areit’s really huge, it’s really
it’s really important, soto come back to what I was trying to say: in communication, it’s matter of point of view: yes, there are difficulties but these are deficits from the point of view of the non-autistic people


27. CS: Focus on Modalities of Interaction
The focus should be on recognizing specific modalities of interaction and communication rather than a diagnosis. The neurocognitive profile is diverse, and understanding the strengths and modalities is crucial. However, the termautismhas historically been associated with impairment.

Key sentences:
Absolutely, I want to reassure you that I think I really understand your perspective, what I’m not convinced about, is the use of the term that you’re using.


28. EL: Diagnosis of Disorders, Not Autism
Distinguishing betweenautismandautism spectrum disordersis crucial. Diagnosis should focus on the disorders, not the overall condition of being autistic. Diagnosingautismseemed impossible.


29. CS: Distinguishing Autistic Individuals
The question arises about distinguishing between autistic individuals with autism and those with autism spectrum disorders. How would you differentiate or name them separately?


30. EL: All Autistic Individuals
All individuals with autistic disorders are considered autistic. Most autistic individuals may have specific challenges related to autism but not always. Success stories like Elon Musk’s demonstrate that not all autistic individuals experience significant challenges. The distinction between those with disorders and those simply considered autistic is not clear-cut.

Key sentences:
I think that ALL the people who have autistic disorders ARE autistic so this is simple
For me there is not on one side people who have autistic disorders, and on the other side, people who are (just) autistic


31. CS’s Concerns About Autism as a Trait and Condition
31a.
CS discusses the variability in conditions like dyslexia
31b. and expresses confusion about usingautismto define both a trait and a condition, emphasizing the need for clarity.

Comments on the item 31:

  • 31a. The problem with comparing autism to dyslexia is the same as with myopia: dyslexia offers no advantages.
    Discussing variability or differences in severity regarding dyslexia (or myopia) is akin to discussing the variability or heterogeneity within the autism spectrum.
    This discussion about differences or gradations in the severity of disorders or problems is not a discussion aboutautismbut rather about the disadvantages associated with it.
  • Theautism spectrum disordersmay evolve (either diminishing or worsening) with age and also depending on circumstances (particularly socio-environmental factors).
    These are the disadvantages associated with a nature, and like any disadvantage, they vary greatly.
  • A person’s autistic nature (i.e. “the autismof someone) may remain relatively constant: when they adapt and overcome obstacles, it doesn’t diminish their inherentautistic nature.
    Just as when one learns to adapt to a solely Chinese social environment (by understanding and speaking Chinese), it doesn’t detract from one’s own language and culture (which are simplyset aside”).

  • 31b. In the hypothetical scenario where we manage to rid the wordautismof its negative connotations, it’s worth considering whether using this term to describe atrait” (orautistic nature”) is relevant to reducing the risk of confusion (which we desire), as it’s a word used in the expressionautism spectrum disorders.
  • However, we believe there is no problem, and the difficulties in the approaches and concepts we discuss here mostly stem from the fact that things are done the wrong way round, meaning people typically start withautism spectrum disordersbefore discussing any other aspect of autism.
    This makes it difficult or even impossible to imagineautismas somethingdevoid of its disorders” (or worse, “devoid of (any) disorders”, which is a common confusion, mentioned at the very beginning of our discussion).
  • In reality, it’s incorrect and illogical to discuss a whole or define a whole (here, autism) based on one of its components (here, the disadvantages associated with autism).
    It’s this erroneous mode of thinking that makes reflections on these subjects very complicated and confusing.
  • Thevisible part of autism” (like an iceberg) isautism spectrum disorders.
    However, this is onlya part of a whole.
  • Things are simple though: autism is something that has both advantages and disadvantages, good sides and bad sides.
  • If one only views things negatively, then they cannot conceptualize the good sides, and thus cannot understand that there is simply a whole, an entirety (calledautism”) which comprises both the bad and good sides.
  • Therefore, there is absolutely nothing inappropriate about discussing the downsides of a whole, in other words, discussingthe downsides of autism”, which we callautism spectrum disorders.
    It is perfectly legitimate to use the same word (“autism”) in both cases.
    It may even be essential, without which we would only encounter confusion or uncertainty.
  • To illustrate this, you can see how perfectly legitimate and appropriate it is to use the same word in expressions such as:
    • Automobile / Disadvantages of automobile / Advantages of automobile;
    • Money / Disadvantages of money / Advantages of money;
    • Youth / Disadvantages of youth / Advantages of youth;
    • Old age / Disadvantages of old age / Advantages of old age;
    • English language / Disadvantages of the English language / Advantages of the English language;
    • France / Disadvantages of France / Advantages of France;
    • City / Disadvantages of the city / Advantages of the city;
    • and so on.

  • Andthe disadvantages of Xare notX”, it’s obvious.
    So, there’s absolutely no logical reason to say that the disadvantages (ordisorders”) of autism are autism: it’s absurd (sorry).
  • There’s also no justification for any sort of reluctance or fear in using the wordautismto describethe whole” (our nature), as this embarrassment only results from the deeply ingrained idea thatautism=its disorders” (which is also grammatically incorrect).

32. EL’s Uncertainty and Consideration of Different Terminology
EL expresses uncertainty and mentions the possibility of using a different word instead ofautismto avoid confusion and misinterpretation.

Key sentences:
I don’t know (about) others, andso either I’m totally wrong
or maybe it’s just a problem of using the wrong word, I meanautism”, which should be another word


33. CS’s Hesitation and Analogy with Dyslexia
CS hesitates about using the termautismand draws an analogy with dyslexia, contemplating the distinction between a trait and a disorder.


34. EL’s Explanation of Medical Approach to Autism
EL speculates on the medical approach to autism, considering if the term inherently impliesautism disordersand explores the nuances of language.


35. CS’s Likeness for Autism Concept and Concerns About Terminology
CS expresses liking the concept of autism expressed by EL, but shares concerns about the terminology, particularly the use ofdisorder,” questioning its connotations.

Key sentences:
I like the concept, I like the utilization of the word, but from another perspective I’m also concerned about keeping the current terminology of autism spectrum disorder


36. EL’s Identification of Problems: Negative Connotation and Disorder Terminology:
EL identifies problems with the termautism,” citing its negative connotation and argues against usingdisorder,” emphasizing the order and consistency in autism.

Key sentences:
if you consider that autism has something to do with Harmony and coherence and ORDER, and I can tell you that I haveit’s not a problem butI have an *obsession* for order, and I’m not the only one, I think it’s for most autistics: they wantwe wantorder, I mean we want the words to be used like in the dictionary, we want Justice, we wantand so on, and you know about the kids who align their toysbecause it HAS to be in order, it’s extremely important
sodisorderit’s really nonsense, it’s really nonsense to use the word disorder because it’s the contrary, in my opinion, it’s a sort of rigidlike acore”, a core which is very very *consistent* and very harmonious inside but which isclosed.
And the more the autistic person starts to open to the rest of the world, then it starts to flourish like this [blossoming / opening up]…
And but it’s still veryit has to be very harmonious


37. EL’s Explanation of Challenges in Adapting to Non-Autistic World
EL discusses the challenges faced by autistic individuals in adapting to a non-autistic world, emphasizing the need to conform and make arrangements.

Discussion about the poor understanding by ChatGPT:

ChatGPT
The author discusses the challenges faced by autistic individuals in adapting to the social norms of the external world, which they perceive as chaotic. In order to navigate this world and secure employment, autistic individuals often find themselves conforming, making concessions, and learning social conventions that may go against their natural inclination for clarity and directness. The author acknowledges the necessity for autistic individuals to learn theseNon-Autistic Troublesto survive in a neurotypical society, emphasizing that their actions in such situations are learned behaviors, not innate characteristics of autism. The author also highlights the risk of autistic individuals adopting these social norms in a rigid and perfectionist manner, sometimes surpassing the expected norms, which can be challenging for both them and those around them.

EL
All this is correct, but this is not really the message of the text.
The goal of the text is to show that when autistic people have a non-autistic behaviour, it does not imply that they are not autistic or that such a behaviour can characterize autism: it is simply that they areusinga non-autistic behaviour which has nothing autistic.

ChatGPT
My apologies for any misunderstanding. The primary message of the text is to clarify that when autistic individuals exhibit non-autistic behaviors, it doesn’t negate their autism. Instead, it indicates their ability to adapt and employ learned behaviors to navigate social situations. The author emphasizes that these actions are strategic adaptations rather than inherent characteristics of autism. The text seeks to dispel misconceptions that observing non-autistic behaviors in autistic individuals means they are not truly autistic (or that autism is not what it is usually described as), emphasizing the importance of recognizing the distinction between learned behaviors and core autistic traits.

Key sentences:
sometimes people tell usah but autism is not this or is not that, because I know an autistic man who does…”: no, he’s not doing autistic things, he’s doing non-autistic (or social) things that he or she has learned and that’s all: it’s not autistic.


38. EL’s Suggestion to Consult Autistic Organizations for Terminology
EL suggests consulting autistic organizations for input on terminology, acknowledging the difficulty in solving the problem of usingdisorder.

Key sentences:
there are two problems, I think that solving the problem of the word disorder is a very big problem, yes it could be another termwhy not consulting the associations, the organizations of autistic people in the world, asking themhow you prefer to be called?”: I’m not sure about the answers, what it would be, but why not, at least trying to ask them, because I don’t haveright now (…)
and the other problem is, what you say, that the word autism isanyway is charged with deficiency which explains why people don’t get what I try to explain.


39. CS’s Discussion on Repositioning Autism in Neurodiversity Context
CS discusses the repositioning of autism in the context of neurodiversity, recognizing positive aspects but highlighting the pragmatic need to define challenges.

Key sentences:
there might be some confusion where we need toin a certain way there is a pragmatic need to define when there is a challenge
that is severe enough
to give entitlements to service, right?
Because we also have these issues with making choices in the ????? system and the finances arethere is a need to define what are priorities of Investments, right?
So we need to define, where, which, who is deserving to have this amount of these services, and who needs to have a more narrow access to services

Comments on the item 39:

  • Yes, all of this is true.
    However, discussions concerning anything related to difficulties and necessary accommodations and solutions are important, but they do not change the fact that it is crucial to distinguishdifficulties associated with autismfromautism itself”.
  • In other words, if we spend 2 hours, 2 days, or 2 years solely discussing autism spectrum disorders and the resulting needs, it’s 2 hours, 2 days, or 2 years of discussionsoff-topicregarding our main objective of distinguishing autism from the disorders that characterize it.
  • In reality, for our purpose, specifics about these disorders are irrelevant.
    Even if these disorders were extremely mild, it wouldn’t alter the discussion aimed at separating these problems from something they merely characterize without actuallybeingthat thing.

40. EL’s Concerns About People Discovering their Autism Without Significant Challenges
EL expresses concerns about individuals discovering their autism without significant challenges applying for benefits, questioning the fairness of such cases.


41. CS: Exploring Entitlements Based on Severity
CS discusses the need for entitlements based on the severity of challenges faced by individuals with autism, emphasizing the importance of specificity.

Comments on the item 41:

  • Indeed: one of the many advantages of ourdistinction” (which are not all listed in our letter due to their abundance) is that precisely when one understands thatautismis not the same asautism spectrum disorders,” it helps to better understand that some individuals can be autistic without having significantdisordersor consequently significant disabilities and needs.
  • Note that the usual gradations (levels 1, 2, and 3) relate to the severity of disorders and needs, but not to adegree of autism.
    It is true that there is a correlation between thedegree of autismand thedegree of disorders or disability,” but it is not necessarily proportional, as it is difficult to assess adegree of autism,” and the difficulties associated withautism spectrum disordersvary depending on circumstances and age.
    Thus, the same person may have a givendegree of autismbut only present disorders/difficulties/disabilities/needs on certain occasions, in certain environments, countries, etc.
    As already mentioned, theirdegree of autismrelative to theirautistic natureremains roughly the same throughout their life, while their adaptive abilities vary (for better or sometimes for worse).

42. EL: Acknowledging Severity in Autistic Challenges
EL agrees with CS, highlighting that being autistic doesn’t automatically imply specific challenges and acknowledging the diversity of experiences.


43. CS: Reflecting on Evolving Perspectives
CS reflects on the evolving field of autism, expressing the complexity and need for further exploration in defining autism spectrum disorders.

Key sentences:
this is interesting and I reallythis is a field that is evolving so much, and where I think we have a lot of questions, I’m not sure we have a straightforward approach, I see your point that


44. EL: Speculation about the Length of the Meeting
EL speculates on CS’s intentions, sensing a potential need for CS to do other things now.


45. CS: Balancing Priorities and Reflecting on Neurodiversity
CS discusses balancing priorities in defining autism, reflecting on the evolving understanding within WHO and considering the implications of neurodiversity.

Key sentences:
Yes, yes, sorry about that, I have something related to the closure of the year that I need to do, but I take this conversation seriously,
(…)
I don’t think we are resolved around an approach that is good enough to reflect the complexity of how we define autism spectrum disorders, how we define autism, how we define neurodiversity

Comments on the item 45:

  • It is likely that current approaches to autism, including the concept of neurodiversity, unfortunately rely on various confusions and uncertainties.
    When attempting to understand autism based on these existing notions (and beliefs), which are all more or less vague, changing, intertwined, and sometimes contradictory, it is logical that one would become lost.
  • That’s why we are convinced that we muststart at the beginning,” which means clearly understanding what we are talking about, distinguishing each component of the issue, naming things clearly and relevantly, understanding the ins and outs, what depends on what, i.e. theorder of the things”…
  • This is not simply a matter of semantics orautistic detailism”; it’s because we can see that people spend their time arguing and getting lost in discussions simply because they are talking about very vague and undefined things.
    • The worst part of all this is that they start by confusinga wholewitha part of that whole”, and from that moment on, inevitably, confusion andlostnessare unavoidable, and ultimately, the discussions are rather useless.

46. EL: Suggesting Collaborative Brainstorming Sessions
EL proposes collaborative brainstorming sessions with specialists from various fields to address the complexities of autism and terminology.


47. EL: Connecting Autism to Natural Order
EL shares thoughts on autism contributing to a more natural and harmonious society, emphasizing the positive aspects and the need for societal adjustments.

Key sentences:
I’m sticking to my point which is thatI agree with the fact thatautismis characterized by those difficulties with social interactions and so on,
BUT, “per se”, in itself it’s not necessarily a disorder
It is a disorder when it enters in conflict with the rest.
I mean, for example thenarrow interests”… or God knows what, for example the difficulties of social interactions, in my point of view, it’s good!
It it’s a problemof courseto survive in society, but it’s good when you consider that it helps what I call the auto-protection of the naturality of the people.
And I even consider that the autistic people canif there are more and more and more [autistic people], there will be, in the countries, a sort of threshold where the society will have to do something, and maybe they will understand that it’s not just putting autistics under a dome and feeding them with medicines
It won’t work, they will have to correct [the system]

In my opinion autismmaybe I’m wrong but in my opinion autism is something useful to force society to be less artificial and more natural, (…)


48. EL: Exploring Analogies with Deafness
EL draws analogies between autism and deafness, challenging the perception of speech as a necessity and highlighting diverse perspectives on communication.


49. CS: Reflecting on Broad Use ofAutism
CS contemplates the broad use ofautismin the context of neurodiversity, expressing uncertainty about its implications and the need for further reflection.

Key sentences:
okay, it makes me reflectand I just want to correct something, that I don’t want to say that autism is about deficit onlyI just see that
using autism in the broader sense, and havingautism spectrum disorderscan create some confusion but maybe we’re already there, I don’t know, I need to reflect a bit more about this
Maybe the fact that the neurodiversity movement is using autism in such a broad term maybe they’re already using it in this way, they usingautismin the broader way to conceptualize thatis soI don’t know, I need to think about itI don’t know whether it is a good thing or not or


50. EL: Defending Autistic Identity and Challenges
EL defends the autistic identity, emphasizing that challenges specific to autism should be separated from autism itself, advocating for clear distinctions.

Key sentences:
For me as a autistic person and for the colleagues who have mylevel” (so to say) we say that we are autistic, we have absolutely no problem about being autistic, the *nature* of being autistic.
There are those who negate their own troubles [or impairments], their own difficulties, (not many), and there are those whoon the contraryadmit that they have many difficulties, but it is something different, it’s distinct, it’s different [autism, and the difficulties]…


51. EL: Positive Impact of Autism Label
EL shares a personal experience of discovering the labelAsperger syndromeand how it positively impacted his self-awareness and understanding.


52. EL: Comparing Autism Awareness to Past Attitudes on Homosexuality
EL draws a parallel between historical attitudes towards homosexuality and the evolving understanding of autism, highlighting the need for acceptance.


53. CS: Proposing Clearer Terminology
CS suggests usingautismto define the broader nature and incorporating terms likeautistic person with difficultiesto create clearer distinctions.

Key sentences:
Yeah so maybe the other way of approaching this could be that we use the termautismto define the broader
range (the nature), and then you say
he’s an autistic person with difficulties in da da da da, with severe impairments in…”
so that would be a clearer way of defining things.

Comments on the item 53:

  • While we understand that a phrase likeautistic person with difficultiesmay have crossed your mind during the conversation, thanks to the real-time evolution of our reflective efforts (and thank you again for that), we are not in favor of such an expression.
    This is because the difficulties of autistic individuals are highly variable and can arise at any moment depending on circumstances (just like for non-autistic individuals, in fact).

  • It is true that one could consider an autistic person who is not autonomous asan autistic person with difficulties.
    However, this approach is problematic because it would imply that other autistic individuals do not have difficulties, when in reality, they almost always do (even if some difficulties require less assistance, they can still be very distressing or evensocially torturousleading to depression and suicide, which is not the case for non-autonomous autistics, who are less or not affected by negative or suicidal thoughts).

  • Perhaps it would be better to avoid discussingindividuals” (who may be more or less this or that) but rather focus on difficulties, disabilities, and needs.

  • It seems that the WHO’s semantic reflections are attempting (admirably) to evolve language in a less stigmatizing manner.
    However, in our opinion, “the road to hell is paved with good intentions”, and we have already seen an example of this with the unfortunate initiative in your pages to labelautismtheautism spectrum disordersprecisely in an attempt to not overly emphasize the disorders, which, on the other hand, puts you in difficult situations when it comes to addressing needs and accommodations (and the use of the concept of neurodiversity does not help, quite the opposite).

  • We believe that we should call a spade a spade, meaning we should not try to sugarcoat difficultiesto pleaseor to try to be trendy.
    In other words, in our opinion, it is essential to be as pragmatic and factual as possible and not to get lost in semantic mazes unless we have the right keys to understanding (which we believe we can provide).

  • Therefore:

    • A- “Autism is autism,” and it would be essential to better understand what we are trying to explain about thisnature,” about thiswhole”;

    • B- “Autism Spectrum Disordersarenothing more or less thanAutism Spectrum Disorders.
      However, in English, it would be useful to find a word other thandisorderssince autismin our viewis based on a kind ofsuper-order,” precisely the opposite of disorder.
      And in French (and Spanish, Portuguese…), the wordtroubleis also not suitable.
      What is defined by the wordtroublesis rather thenormal society”… (and also the ideas it has about autism, which are really troubled and confused).

  • A and B go hand in hand but are distinct and must remain separate in language.
    From the moment we confuse A and B, we inevitably enter into a problematic situation because if we want to be fairer (less stigmatizing) forA,” we are then obliged to soften the terminologies forB,” which rightly worries families and caregivers, and which is really not logical when autistic individuals need so much help, accommodations, and corrections from society.

  • RegardingB”: On the contrary, it is essential to better understand what these difficulties really are, and even to understand that they are sometimes more severe than perceived, and to understand the sources of these difficulties and how to solve them.
    (We can really help a lot with all of this.)

  • RegardingA”: It is equally necessary to understand what autism is, or at least, failing that, to understand that autism is not just about the drawbacks of autism.
    It is also essential to understand the qualities and advantages of autism, and this for many reasons, particularly because if public authorities believe that autism is onlydisorders or problems,” then it is logical that, despite providing some accommodations, they tend to prefergetting rid of autistic disorderswhen the solution is not that: in summary, the solution (for autistic people but also for everyone) is to reduce or correctnon-autistic disordersor social or socio-generated disorders.

54. EL: Emphasizing the Importance of Distinctions
EL stresses the necessity of making clear separations betweenautismand associated challenges, urging for experimentation in terminology.

Key sentences:
Yes, it’s essential in my opinion, it’s really essential to really try toeven if it’s not cleartry toI mean, like an experimentationto make a really clear separation, a barrier betweenautism” (trying to define it, but the first part of my text would help a lot), and the other side, all the usual things: the disorders and so on.
And and try not to mix both, and then little by little you will understand what I mean, that it is really something different.
But maybe for someone who is not autistic maybe it’s not easy to see.
I think that my textmaybeif you read it (the first part about autism), if you read it again, maybe it will become more clear


55. CS: Considering Broader Consultation
CS acknowledges the need for broader consultation on terminology, expressing intentions to think further and involve diverse perspectives.

Key sentences:
YeahSo IOkay now this is I mean this is useful, thank you for taking the time to share this with me, and to explain
I willI willI will be thinking about how
Because this is beyond the fact sheetso the fact sheet is one, but I think it’s beyond that
So I canI can see howI’m not sure to be honestYou know WHO soit’s not that I can take my idea and redraft the definition of autism myself, but the minimum that we can do is possibly to be careful with sticking to the termautism spectrum disorders”, or maybeautism spectrum conditions”, when referring to the ICD-11 spectrum of severe conditions

Comments on the item 55:

  • We greatly appreciate that, following our conversation, you are willing to try using only the term that definesdisorders” (orcondition”), making an effort to avoid inadvertently creating the confusion we mentioned.
  • We would very much appreciate it if you could amend your pages on the general presentation of autism spectrum disorders: this is the main goal of our initiative.
  • Indeed, the choice of the wordconditionsto replacedisordersseems interesting and preferable, in principle.
    As long as everything is done in your pages to avoid suggesting that autism is nothing more than the disorders and difficulties that characterize it.

56. EL: Proposing WHO Focus on Disorders
EL suggests that WHO, being focused on health problems, may not need to define autism itself but should address associated challenges and disorders.

Key sentences:
why not just takingautismout of the situation, and the WHO would just care about what they have to do, I mean thedisordersor the challenges etc.


57. CS: Recognizing WHO’s Evolving Approach
CS discusses the evolving focus of WHO beyond disorders, suggesting a shift towards a more holistic approach to health and well-being.


58. EL: Separating Autism from Health Problems
EL emphasizes that autism itself is not a health problem, separating it from challenges specific to autism.

Key sentences:
the challenges or difficulties specific to autism, they are clearly existing and it’s clearly a big problem, and it has to be addressedof courseand if the WHO is going more in the direction of the global approach, the social approach and all what I said (environment and so on), it’s very good
And changing (replacing) “disorderwith another word it would be good also.
But this is one thing, and it is about the problems and the challenges and the health as wellbeing and so on, okay
but it is not autismIt is (I know that the difference is subtle, it’s difficult) but (with) “autism in itself”, there is no problem.


59. CS: Acknowledging the Need for Reflection
CS expresses intentions to reflect on the discussion and consult more broadly, recognizing the importance of considering different perspectives.


60. EL: Difficulty in Clarifying Distinctions
EL highlights challenges in explaining the distinction between autism and associated disorders, especially when confronted with conflicting information.


61. CS: Committing to Further Thought and Consultation
CS commits to further thinking about the issue of terminology and suggests internal and external consultations to influence processes.


62. EL: Acknowledging Clarity in ICD-11 Definitions
EL acknowledges the clarity in ICD-11 definitions but raises concerns about the confusion created by general pages on the WHO website.

Key sentences:
Like I told you, in the ICD-11 definitions I don’t see any problem.
No, it’s the general pages whichwith a good intention, to remove disorderbut in fact it creates a problem and no one thought about it :-)…


63. CS: Expressing Appreciation
CS expresses gratitude for the discussion, noting the challenging nature of the conversation and the effort to enhance understanding.

Key sentences:
Sure sure sureall rightthank you so much!


64. EL: Expressing Thanks
EL reciprocates appreciation, thanking CS for the conversation.


65. CS: Appreciating the Efforts
CS reiterates appreciation for EL’s efforts in helping to understand the complexities of autism and related terminology.

Key sentences:
I really appreciateand all the efforts to let me understand it 🙂


66. EL: Acknowledging Challenges
EL acknowledges the difficulties in bridgingtwo different worldsof understanding.

Key sentences:
it’s difficult, it’s not because of you or because of me, it’s because it’s two different worlds 🙂


67. CS: Encouraging Bridge-building
CS humorously suggests bridging the two worlds of understanding.


68. EL: Introducing Autistan Organization
EL introduces the Autistan Organization as an initiative to bridge the gap between different perspectives on autism.

Key sentences:
That’s why I created the Organization of Autistan
[showing a little flag of Autistan]
which aims to make bridges between the two worlds
It’s difficult, but with people of good faith it’s possible to advance, to understand better


69. CS: Acknowledging Listening Role
CS expresses a preference for listening and appreciates the opportunity to understand EL’s perspective.

Key sentences:
I’m sincere when I say that I appreciate the opportunity to listen to you 🙂


70. EL: Expressing Belief
EL expresses belief in CS’s sincerity and the possibility of advancing understanding with people of good faith.




4. Some further explanations after the meeting



4.1. Complements by audio messages

4.1.1. Presentation

[13:14, 16/01/2024] Éric L.: Dear Mrs Servili, above are two audio messages of clarifications.

  • 1. I think I found a rather simple way to really make understand my point (in particular with the idea ofconsandprosof autism, but also with other ways orimages”).
    Once you hear it, all should be clear and obvious, and you should understand that (sorry) it is certainly nonsense to say that theconsof a thingAare that thingA”.
  • 2. There is also an explanation about the comparisons with myopia and dyslexia, which IMO were not relevant (sorry ! 😊). But all can be discussed.
  • 3. Another clarification is about the fact thatmy pointis not related tovariability”, thresholds, entitlements, benefits and so on. I don’t negate the existence of the challenges of course, and the fact that it’s very debatable if they come morefrom autismorfrom society”, does not prevent them to be serious problems needing to be addressed. But it’s not really the point in the current discussion.

I hope you’ll find some time to listen, and all will be clear.
Then, hopefully, maybe like me you won’t understand why the WHO says that autism IS the disorders (or problems, orcons”, or bad sides), of autism.
Sorry but it is really not coherent, and -moreover- it’s really harmful for the attempts of organizations in the world who struggle for a better, dignified, fulfilled life for autistic people, which is of course impossible if we consider that autism is ONLY the bad sides of autism (even in the verymildcases). (All that is explained in my long document.)

Thank you very much.
Have a nice evening !

Eric L.


4.1.2. Transcript of audio message N°1

20240116 clarifications and additions to our meeting for a better understanding

  1. (0:01) Dear Mrs. Servili, good day. I will try to be very short.
    (0:08)
    First of all, thank you very much for all the time that you spent for reading my document
    (0:14) and also for our meeting and all your efforts (…).
    (0:53) And I think that although we progressed a lot during our meeting in our mutual understanding,
    (1:05)
    in particular you explained me very well the problem of the confusion of using the word autism.
    (1:17)
    On the other side, I think that it’s still possible to take you, so to say, more in the direction that I want to explain.
    (1:34) And I’ve seen also that you made a lot of sincere efforts, and it’s rare, I’m not used to.
    (1:50)
    So, all that is good (…),
    (1:56)
    and you said several times that you need to think at the end of our meeting (…)
    (2:11)
    but I think that if you read the first chapter in which I give a list of some characteristics of autism, (2:23) probably it will help a lot.
    (2:26)
    I think also that in this discussion we were still, although our very big efforts, mutual efforts,
    (2:36)
    we were still more or less in the misunderstanding.

  2. (2:43) (…) (2:53) What I mean, in fact, it’s very simple what I want to explain with all this story about autism,
    (2:59)
    the difference between autism and the autism disorders.
    (3:05) (
    …) (3:10) It’s not a sort of spectrum with on one side autism and the other side autism spectrum disorders,
    (3:18)
    and I think that you understood this, we agreed on this, (3:23) but there is… (…)

  3. (3:27) Given that you are so much professionally, of course, into some culture,
    (3:35)
    medical culture approach of autism and all these things, and autism disorders,
    (3:40)
    and also you read a lot of things about neurodiversity,
    (3:44)
    of course, you have plenty of thoughts about this.
    (3:49) So when you read our document, and even when you listen to me,
    (3:53)
    it’s impossible not to think about all these things that you already know.
    (4:02)
    So, in my opinion, it complicates, maybe.
    (4:08)
    What I mean, with all respect, is that if it was possible with some sort of magic wand,
    (4:19)
    just temporarily to wipe out, to erase, to forget any knowledge,
    (4:28)
    of course, it’s impossible, but if it was possible for you to forget anything, anything about autism,
    (4:34)
    and you just read our letter, and I think you should understand really clearly what I mean.

  4. (4:43) But I have another way, without the need of magic.
    (4:49) In fact, it is so simple to understand what I mean.
    (4:53)
    It is simply that autism is autism, and there is on one side the cons,
    (4:59)
    or the defects, or the disorders, or the problems and the difficulties relating to autism,
    (5:06)
    and on the other side, the pros, the good things that few people see.
    (5:12) It’s so simple. In everything, there are the pros and the cons. (5:17) (…)

  5. (5:26) For example, I had a very rare and original American car. (5:34) (…)
    (5:40)
    In the USA, it’s not rare, it’s rather common, everyone knows it.
    (5:46) But in France, I can tell you, or in other European countries, it’s complicated for many reasons. (5:55) And I will not make the list.
    (5:58)
    But what I mean is that I was happy to have my car.
    (6:03) I bought it, no one forced me to buy that car.
    (6:06)
    I bought it because it was original and nice.
    (6:10)
    And it’s the same for autism.
    (6:14) With that car, I had various challenges.
    (6:17)
    Just to find an insurance understanding, knowing the brand.
    (6:25)
    It’s like at the beginning, when I was saying Asperger, no one understood what I was saying.
    (6:31) Or even sometimes when I sayautism”, some people think they hearartistor something in other languages. (6:39) Autista, artista.
    (6:42)
    So, there were the cons.
    (6:45) How to find a parking slot when you have a car of 5 meters 50 of length. (6:53) And all those things.
    (6:55)
    And how to find the spare parts when that brand does not have any representation in Europe, and so on
    (7:02) So these are the cons.
    (7:04)
    But there were, of course, the pros.
    (7:07) It was a very good car.

  6. (7:13) So for autism, for me, it’s the same.
    (7:19)
    If people have a negative approach, or if they see only the bad things, (7:24) then they think that it’s a big problem to have such a car.
    (7:29)
    And if they see only the good things, it’s the contrary, like for anything.
    (7:34) So it is really simple to understand.
    (7:37)
    So this is another reason why, although I understand that it’s confusing to use the word autism, (7:45) which is, as we said, charged with negative things, and so on.
    (7:50)
    But there is no reason to use another word, because it is autism, and that’s all.

  7. (7:55) On one side, there are the cons, and on the other side, there are the pros.
    (8:00) And not many people understand the pros. (8:03) That’s all.

  8. (8:04) (…) [Let’s make another metaphor], let’s take the image of a river, (9:31) and the people on one side of the river, they would know only that side of the river, (9:36) and they would not know what is on the other side, if the river is very large.
    (9:39) Or if you take the ocean at the time when they did not know about America.
    (9:47)
    So, when people see the car of the autistic person only from one side,
    (9:53)
    they know only, for example, the left side,
    (9:55)
    and they don’t know what is on the other side, [the right side].

    (9:57)
    It can be totally different, a different color or something.
    (10:02) It’s not a very good comparison.
    (10:03)
    But anyway, it’s very simple to understand.

  9. (10:08) Autism is autism.
    (10:10) It is the nature. (10:12) It is a human difference, variant, or something like that.

    (10:18)
    And given that it’s not well understood, (10:22) and given that autistic people are forced to live, (10:27) (it would be better to say that they are not forced to live), (10:31) but the system in which they live is not adapted to autism.
    (10:37) [then] Of course, they suffer, and they have problems, and so on.
    (10:41)
    And it makes them to stay trapped in some sort of bubble, and so on,
    (10:49)
    which, of course, does not help.
    (10:52)
    But the disorders and the problems, most of them, they are debatable,
    (10:57)
    and they are a matter of point of view.

  10. (11:00) And I’m not very sure that it was clear in our conversation,
    (11:03)
    but I’ve never said I’m against the idea of the disorders.
    (11:09)
    There are the two things, in fact, three things.
    (11:12)
    There is (1) autism, which has (2) the good sides and (3) the bad sides.
    (11:17) Autism is consisting in positive and negative things, (11:26) like almost everything, like electricity, like so many things.

    (11:31)
    So it’s simple to understand.

  11. (11:33) I have another comparison.
    (11:35) It’s a nut, you know, a walnut.
    (11:38)
    When you see a walnut from the exterior, (11:41) and if you have no tool, and if you have no idea, and so on, (11:45) it seems something absolutely useless, maybe nice, but useless. (11:51) You don’t know that you can eat it.
    (11:54) Sometimes I see some things here in Brazil, (11:56) I don’t know if it is possible to eat it or not.
    (12:02)
    So when you know how to open it, and it’s difficult,
    (12:06)
    but when you open it, then you understand that there is the good thing inside,
    (12:10)
    but the wood, the outside, you cannot eat it.
    (12:14)
    It’s the protection.
    (12:16) Autism is something really similar,
    (12:20)
    even the shape, more or less, of the brain.
    (12:24)
    So there are so many things to discuss, (12:33) and I hope that this message is useful, (12:38) and if it is not clear enough, I hope we can talk again.

  12. (12:43) I have a few questions.
    (12:44) There are two or three things that I did not understand in what you said,
    (12:49)
    and [hence] it’s a bit complicated to share it [like that],
    (12:51)
    because I have colleagues who are very interested in the world.
    (12:57)
    I think that when I will publish the transcript, (13:02) it will be a very good basis, (…)
    (13:20) and I hope that we can continue,
    (13:22)
    and that maybe you will organize some meeting, (13:26) I mean, remote meeting, brainstorming, like you said,
    (13:31)
    because I don’t want to insist, (13:33) but it is really important, really important (13:37) to end with this confusion,
    (13:44)
    and with the publication, I mean, the WHO, (13:49) if they understand, and if they believe, (13:52) and they understand what I say, (13:55) and if they understand why it is so important, (13:59) and why it is so harmful currently,
    (14:01)
    I explain all this in the letter. (
    14:05)
    I hope they will want to correct it, (14:09) because it’s really a big problem when we read (14:12) that autism is the same thing as the disorders of autism.

  13. (14:18) In the confusions, there is the confusion of the word [“autism”] (14:21) that you explained to me, but I told you (14:24) that there is a way to solve it, (14:27) like I tried to explain today,
    (14:29)
    and there is another problem, (14:31) is that I noticed it when I explained (14:35) that autism is not the same thing as autism disorders, (14:41) because many times people believe (14:45) that I’m trying to insinuate or to say (14:51) that the disorders are not existing.
    (14:57)
    Many times people told me this, (15:00) and I even did not understand at the beginning why they were [saying that]…
    (15:03)
    No, it’s two different things that come together, (15:09) like the inside of the walnut and the nut, (15:12) like the good things of anything.
    (15:17)
    There are good things and bad things.

  14. (15:19) If you have a very simple common car, (15:22) you don’t have the problems that I had with my car,
    (15:25)
    but on the other side, (15:28) it’s not very fascinating, so to say, (15:31) to have a common car.
    (15:32)
    It’s my opinion, of course.
    (15:34)
    And so on.
    (15:36) If you have a Rolls-Royce, or (you’re Italian), (15:39) so let’s say, if you have a Ferrari, (15:41) there are very good sides, of course.
    (15:44)
    Me I don’t like it, but some people like it.
    (15:46)
    But you don’t go to the supermarket with a Ferrari, (15:50) or you don’t sleep inside.(15:51) I could sleep in my car. (15:52) I modified it to sleep inside. (15:54) And so on.

  15. (15:56) So there are [almost] always the pros and the cons in [almost] anything.
    (16:00)
    So for autism, it’s the same.
    (16:02)
    The problem is that people see only the bad things.

  16. (16:05) That’s all.
    (16:07)
    So, thank you very much,
    (16:09)
    and please, I hope that you will let me know (16:13) what you think about all this,
    (16:14)
    and that you can read also the few things that I wrote above.
    (16:18)
    Thank you very much, and good day, (16:20) and thank you for all your collaboration.

4.1.3. ChatGPT synthesis of audio message N°1

The speaker begins by expressing gratitude to Mrs. Servili for her time and effort in reviewing a document and holding a meeting. Despite progress in understanding, there’s a sense of continued miscommunication, particularly regarding the distinction betweenautismandautism spectrum disorders.The speaker acknowledges Mrs. Servili’s expertise in medical culture but suggests that existing knowledge may complicate understanding. They propose a hypothetical scenario where Mrs. Servili forgets prior knowledge of autism to grasp the speaker’s perspective clearly.

Using metaphors like owning a rare car, the speaker illustrates the duality of challenges and benefits inherent in autism. They emphasize that autism encompasses both positive and negative aspects, akin to the pros and cons of any situation. The comparison extends to viewing autism from different perspectives, akin to seeing both sides of a river or a walnut’s interior and exterior.

The speaker urges for clarity in distinguishing between autism and its disorders, advocating for a better understanding to combat harmful misconceptions. They stress the importance of acknowledging both the strengths and challenges of autism, which are often overlooked. The message concludes with a request for feedback and further discussion on the matter, expressing hope for continued dialogue to address the confusion surrounding autism and its disorders.


4.1.4. Transcript of audio message N°2

20240116-2 clarifications and additions to our meeting for a better understanding

  1. (0:00) (…) If if you agree with that approach, which is extremely simple (…)
    (0:15)
    There are the good sides and the bad sides
    (0:19)
    so it makes sense completely to haveautismand
    (0:24) t
    o talk about theproblems of autismlike we talk about also thequalities of autism
    (0:30) (N
    ot many people do it, unfortunately, but I can talk a lot about the qualities of autism.)

  2. (0:39) So it’s completely correct to have the wordingautismand
    (0:47) f
    or the negative sides (which are debatable, but let’s say to simplify, what people consider as the negative sides),
    they can call it the
    disorders orAutism disorders”, it’s completely correct (…)

  3. (1:14) The negative things of autism can be debatable and most of the times it’s a matter of point of view, but this is a secondary problem. This is a secondary discussion.
    But anyway no one can negate that there are of course challenges, difficulties, problems with autism, that’s certain.
    (1:39) S
    o these things are (…) the bad sides of autism, and the problems, the defects, the flows and such things.
    This is just one side.

  4. (1:57) So there is no problem, there is autism (which is the general thing), and
    (2:03) o
    ne aspect of autism, let’s say the negative aspect, is the disorders, what is called by medicineautism spectrum disorders”.
    (…)
    (2:19) (…) B
    ut it’s not the same (asautism”) of course.
    (2:27) Why a part of something should be the same as the whole ? It does not make sense, you see.
    (2:36) So if you take the troubles, if you take, (…) economics or whatever, you can say that there is the good and the bad, or if you take any sort of thing, some sports or something, there is the good and the bad things.
    (2:55) But the bad sides of something it’s not that thing. It’s obvious. It’s so obvious.

  5. (3:05) So it’s really important not to reduce the bad side of autism to autism itself.
    And I think that
    (3:16) maybe many people do this because they don’t even understand, they don’t even see the good things, the good sides of autism.

  6. And (3:27) here, it leads me to the second thing important thing that I want to say, it’s important: during our conversation, you made some comparisons, you took myopia and you said myopia is a human difference.
    (3:52) Yes, but then later you say you took dyslexia also, to make some comparisons, but no
    Why? Because I
    don’t see any good things in dyslexia. I don’t know how it can be useful.
    And
    same for myopia. How could myopia be useful?

    (4:20)
    You can use myopia or dyslexia for what you said, the question of the variation between 0 and 100 percent, and to try and discuss at which percentage, at which point, it becomes a problem or not, or if there is an impairment, and when there is disability or not, and when we should give entitlement for (…) accommodations, services and so on, but it’s not a problem.
    (5:00) The problem, the discussion is not here. It’s not a problem, this.

  7. (5:11) (…) The problem is just that if something namedAis consisting of one half (a) and the other half (b), you cannot say that the half (a or b) is the whole (A), and that’s all.
    (5:37) When people say that the negative half of something is that thing, it’s very bad.
    It’s a big problem because the whole world sees that thing only as something negative, and for us it’s extremely difficult t
    o defend our point.

  8. And it’s not just something ideological
    I
    can prove (and I’m not the only one) I can prove the positive aspects, the other side, the hidden side. I can’t show it.
    (6:15)
    Even for those autistic people who are challengedso to say, if there were some things be made more appropriate they would be less challenged, and (6:28) even those, you know already that even those ones who are challenged, sometimes they have some (6:36) abilities, qualities, which may be better than me or you on some subjects

  9. And anyway, anyway, if they did not have [such special qualities], they would still (6:45) have the right to a decent life and so on

  10. But what I mean is that, (6:55) in my opinion it’s not adequate to use myopia or dyslexia or such things in our discussion.
    (7:05) Sorry about that, I don’t want to offend you, but I came to that conclusion because we cannot saythe bad sides of myopiaandthe good sides of myopia”. All right.
    (7:23)
    So that’s where the comparison stops. It’s not possible.

  11. I think that maybe the big problem is because most of autistic people that we see really have challenges, and you of course at the WHO you see autism from that side: t