It would be very useful to convince the World Health Organization (WHO) that “autism” is not the same thing as “autism disorders”.

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

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1. Why it is so important

This subject is of the utmost importance, because the “Autism-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 (since “the qualities of a disorder” is an absurd idea), and therefore from developing them;
– which makes that the public authorities provide almost no effort to correct the “social system” to make it more suitable for autistic people (since they believe that autism is only “a defect to be eliminated”);
— which therefore perpetuates a “troubled and disturbing” social 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 as “fundamentally defective for life” (since their autistic nature is reduced to solely “disorders”).

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 which – very regrettably – begin by announcing that “autism” is the same thing as “autism 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.

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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 a “support” for our meeting, which would be too vague without it, i.e. “starting from scratch”.

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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 of “Autism” 6
1.1.1 “Essential characteristic” of autism 6
1.1.2 “Mental, sensory and behavioural characteristics” of autism (description without a defectological approach) 6
1.1.3 “Self-protection characteristic” of Autism 8
1.2. The “defectological” characterisation of autism (i.e. from a “non-autistic” point of view) 9
1.3. Essential conclusion 9
2. “Autism Disorders” 10
2.1. The subjective and debatable nature of the notion of “impairment/deficiency/disorder” (related to autism) 10
2.1.1. Subjective disorders (related to autism) 10
2.1.2. Examples of subjectivity in the WHO “technical description” of Autism Spectrum Disorders 12
2.1.3. Subjectivity in the WHO’s “general description” of “disorders” 14
2.2. The objective, factual and undeniable nature of the “problems/difficulties” 14
2.2.1. Objective disorders (related to autism) 15
2.2.2. Objective Difficulties and Disorders” from 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 Disorders” according to the WHO 20
3.1. The WHO’s “general description” of “autism/disorders” (the two ones being confused) 20
3.2. The WHO “technical description” of “Autism Spectrum Disorders” in “ICD-11 / 6A02” (WITHOUT the confusion of the “general description”) 25
4. Our Fundamental Distinction between “Autism” and “Autism 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 cases “autism” is not accompanied by “disorders” 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 reducing “autism” solely to “disorders” or “deficiencies” is highly devaluing and dangerous 28
4.2.6. Because it is detrimental to “learning about society” (which is very useful, as long as it is not “formatting”) 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 usual “defectological” approach 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 and “judgmental” nature of the WHO definitions of “Autism” and “Autistic Spectrum Disorders” 32
5.1. Concerning “autism/disorders” (confounded) in the “general description” 32
5.2. Concerning “disorders” in the “technical description” 36
6. Other important issues on the WHO website concerning “Autism” and “Autism Spectrum Disorders” 38
6.1. The “Anglophone Disorderism Disorder” (cf. “autistic disorders”) 38
6.2. The “Francophone Troublism Disorder” (cf. “autistic troubles”) 39
6.3. The “Anglo-French Personwithism Disorder” (cf. “persons with autism”) 39
6.4. The “Francophone Hittism-Affectism Disorder” (cf. “personnes atteintes d’autisme” (“persons hit (affected) by autism”)) 42
6.5. The “Anglophone Havism Disorder” (cf. “to have autism”) 43
6.6 The world upside down 44
7. Additional details on “co-morbidities”, “disability” and “suffering” 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. The “handicap” associated with these “disorders” 46
7.3. The “sufferings of autistic people” 47
8. Our positive and realistic approach to “Autism” 48
8.1. “Autism” or 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 against “disturbances” (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 about “non-autism” and 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 of “frames of reference” (or paradigms) – Conclusion 57
10.1 “Natural reference frame” vs. “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 of “person with” (and “affected by”) 62
A2. Confusion between “autism” and “disorders (characterising autism)” 63
Appendix B: Web page of Alliance Autiste (France) on the “Fundamental Distinction of Autism”. 66
B1. Autism 66
B2. The specific difficulties and “disorders” 66
B3. Autistic disabilities 68
Appendix C: Letter “To 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 as “sick” or “madmen” people 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 a “conjunction” of socio-generated sensory and mental ((impairments)) disturbances, lived very recently 76
D1. Rather detailed chronological description 76
D2. The “normal non-autistic” approach (of course superficial and erroneous) to this situation 79
D3. Approach “from the inside” (i.e. precise and realistic, instead of “guessing”) 79
D4. How to “decide” (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

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2.2. Our explanatory document in PDF

2.2.1. In English

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 of “Autism”

1.1.1 “Essential characteristic” of 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 characteristics” of 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 characteristic” of Autism: Autism is described to have a self-protective resistance, termed “rigidity”, which preserves or even enhances the aforementioned characteristics.

1.2 “Defectological” characterisation 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.

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2.3.2. “Autism Disorders”

2.3.4. Our Fundamental Distinction between “Autism” and “Autism Spectrum Disorders”

4.1. Distinction Definition

It clarifies the difference between “Autism” and “the 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: Equating “A” with “the problems of A” is nonsensical, akin to saying “bicycle” (or “cycling”) is the same as “the benefits of cycling.”
  • 4.2.3. Variability in Presentation: Sometimes “autism” may not be accompanied by “disorders,” 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: Reducing “autism” solely to “disorders” devalues autistic individuals, contributing to low self-esteem and even suicide.
  • 4.2.6. Learning and Adaptation: The current confusion hinders autistic individuals’ adaptation 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 between “Autism” and “Autism Spectrum Disorders” is 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.

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2.3.5. The negative/defectological and “judgmental” nature of the WHO definitions of “Autism” and “Autism Spectrum Disorders”

5.1. Concerning “autism/disorders” (confounded) in the “general description”

This chapter shows the words in the WHO text that are ” defectological “.

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 word “atteint(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 as “risk of autism” and equating ASD with autism.

5.2. Concerning “disorders” in the “technical description”

This chapter shows the words in the WHO text that are ” defectological “.

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2.3.6. Other important issues on the WHO website concerning “Autism” and “Autism Spectrum Disorders”

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2.3.7. Additional details on “co-morbidities”, “disability” and “suffering”

This section provides additional insights into “co-morbidities,” “disability,” and “suffering” related 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 The “handicap” associated with these “disorders”

• • 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 The “sufferings 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.

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2.3.8. Our positive and realistic approach to “Autism”

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.

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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 Against “Disturbances”

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 about “Non-Autism” and 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.

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

10.1. Natural vs. Artificial Reference Frames

The document contrasts two frames of reference: the “natural frame” characterized by harmony and coherence, to which autistic individuals naturally adapt, and the “artificial frame” marked 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 individuals’ contributions 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 the “natural” and “artificial” frames 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.

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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 of “person with”

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

A.2. Confusion between “autism” and “disorders”

The email notes a persistent confusion between “autism” and “autistic disorders” in 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.

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2.3.B. Appendix B: Web page of Alliance Autiste (France) on the “Fundamental Distinction of Autism”

Appendix B summarizes the content of a web page from Alliance Autiste (France) titled “Fundamental 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.

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

The letter “To 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 as “sick” or “mad” simply because they are different, emphasizing the need for understanding and acceptance rather than attempts to “correct” or “cure” them 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.

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2.3.D. An example of a “conjunction” of socio-generated sensory and mental disturbances, lived very recently

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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.

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3.1. Full transcript of our meeting

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

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0. (salutations and technical adjustments)

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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 between “autism” and what they call “the disorders of autism”.

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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 health “conditions”, just because of the negative connotation of disorders per se.
But yes for autism it’s difficult also to move away from “autism spectrum disorders”, there is no other alternative terminology that has been proposed to define the condition in alignment with ICD-11.

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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 using “neurodiversity” in 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 word… minorities…
[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] that “autism is the problem” and 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.

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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 the “disturbances”, (en français, les “atteintes”), so it is neurological because we “receive” what 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…

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5. EL: And there is also another problem with the neuro… how to say say… I 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 the “severe” autistic 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 really… We, the light / the mild autistic people we… me, in the past, I did not really realize how much it is a problem, there is really a problem, we cannot say “oh it’s just a difference and there’s no problem”.
So, when I say this, when I say “oh it’s just a difference”, here it’s very important to understand the difference between autism and the troubles [or “disorders”].
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…

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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 of “life 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.
So… In other words, we could say that autism is a human difference with qualities and defects.
There are the qualities. There are very important qualities… it is true…

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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 environment – social or socio-generated environment), his or her autistic qualities are completely blocked inside, and it’s almost impossible to evolve, to develop these things.

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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…

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9. CS: Yes… Yes, what really resonates with me is this recognition of the heterogeneity, the variability in the… when we talk about autism… individuals may have very severe challenges, and and may have mild ones… or may have… may really have some… yeah 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, and… I 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), that… I mean… the 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…

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10. CS: So there is this different perspective, and I find that you are recognizing the different elements of… yes there is a diversity, and autism can be conceptualized as a… natural… variation… of 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.

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11. CS: What is not is less clear to me, is why…
So, I want to clarify first the “fact sheet”.
The fact sheet was written with only “autism 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 using “autism spectrum disorder” and they said “we 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 with “autism spectrum disorders” instead of “autism”.
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 using “disorders”.
So instead of saying “mental disorders”, [we say] “mental health condition”.
So there was an intention to go in that direction here with this fact sheet and avoid [to] use “disorders”, because there is a lot of…

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12. EL: I see… When you remove… Normally it is “autism spectrum disorders” : if you just write “autism” then you kick away “disorders”,
[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, because… on every web page in France about autism, almost always the first sentence that you can read, is “autism 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…

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13. CS: Can I ask you something…
[EL: Sure]
For instance, if we take myopia… Myopia can be conceptualized as a human variation, right ?
How many of us have glasses because we are having myopia…
But it’s also a disorder… So 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 is… recognizing that the difficulty… I don’t see it as a problem the fact that autism, in my view recognizing that it is a… I 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 autism… but it’s a bit complex… but what I think is… in 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 impairment… so 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 of… it’s a human variability, a variability in this particular trait and competence… so I don’t… there are certain conditions that are one-off, there are other conditions that are… really 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 not… should 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 everyone… so it’s not “either or”, I see the environmental component of actions as complementary to the provision of support and care.

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14. EL: I’m not very sure that we… we managed to… that I managed to really make understand how I see really of a complete difference… distinction… difference 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 ask “Do you see a difference between autism and autism disorders?”, almost all of them tell “No 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 in… I don’t remember which countries… who told me “I understand what you mean”…
But it’s difficult to… even with all my text… Sorry, I think that I did not really manage but let’s try…

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15. EL: Look, how to say… You know the concept of the Flat Earth… in the past… people 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 that – but 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 problem… in 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 obvious… it’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.

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

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17. EL: Well I don’t… I’m not sure that I defined it…
At the beginning, I made a list of characteristics…
Because it’s very difficult to define autism…
Well… honestly, I have my own opinion about autism, and probably I wrote it in the document… but 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, when… in 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 very… their 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 difficult… And so… for 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-persuasion… it is possible… but I have proofs… of 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 Naturality… maybe 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.)

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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 say “Ah, now (here) there is autism… and under this (point) there is no autism”: that’s right… but for me it’s not a problem because… (you see my two hands [on the screen]), for me it’s two things really different… they go together, like my two hands they go together, but these are two different hands… so, for me autism is…
For example, the color of the skin… I’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 color… there 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 same… so, 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…
(Hem…the noise… when you say…
[There is a distracting noise in the office of Chiara Servili and she asks someone to stop it.]
[CS: sorry, I got distracted… yeah]

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19. EL: When you say just just… (une parenthèse) [a bracket] about the noise… people don’t go far enough in their analyses about autism: for example they say “Ah, 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 that… what 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… (…)
so… I am light autistic but when I have difficulties… in fact I have big difficulties, but it’s subtle… it’s in the relationships… for 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 life… it 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 neighbours… sometimes the dogs… but 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 me – in in the back – and this is something really horrible for me…
And I started to explode and to shout and to… it 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 very “capable”, 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.

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20. EL: But the question is that… for 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, but… yes, 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 but… in 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 say “social environment” I 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…

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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 understand… once you start to make a… you 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 bad… so “autism is bad”, “the [autistic] person has a very big problem and has to be corrected, cured” or I don’t know what and that’s all…
They don’t admit their own problems…

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22. CS: To be honest, I think the field has evolved a lot… Now, to my knowledge, certainly the WHO but also most of the other national governments or ministries of health would not talk about treating autism… It’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 about “autism spectrum disorders”, even, should not be seen as a… something 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 and… yeah…
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 use “autism spectrum disorder”, then we are viewing another approach that is about treating the condition, I don’t think that is the case.

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23. CS: But I see that you are using the term “autism” almost 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 using “autism” because autism is the word that has been that originated from autism spectrum disorder, originated from the definition of the condition…
“Autism” is related to the fact that there is an impairment… at 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 from – of course – the 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 is… the trait, for me, is well-being.
Or… right, is it’s not the same, but… I 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 trait… because it creates a confusion.

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24. EL: OK, I don’t find it in the general population that trait… I find it only in autism…, it’s “autistic 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…

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25. CS: Yeah… Because even when you say “autistic”, if you think about how the terminology was originated… is 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…

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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 the “defectological” [usual] definition of autism, BUT with the autistic perspective, I mean with the positive perspective…
Let me try to explain… For example… (I will explain and you will understand)…
For example, when… look, 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 is… when 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 saying “yes there are difficulties in relations, of course there are difficulties in communication, of course, and so what?”
It’s not necessary “disorders”, 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), and… every day, almost every day, I have the proof, I have the evidence that the people in front of me (the non-autistic people – not you but most people), they just don’t pay attention… they don’t listen… they REALLY have problems ! 🙂
They really have an “attention problem”, they really don’t pay attention, they don’t listen, they don’t read, they have what I call… I say to you but it’s difficult because I call it the “Non-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 to… if people had the courage to try to think about what I call the Non-Autism Troubles… there are… it’s really huge, it’s really…
[CS: Yeah]
it’s really important, so… to 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…

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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 observing… what is the from my perspective… we 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 perspective… maybe I understand that you are not narrowing the… I 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 of… that, in terms of… the way our brain function is of course very diverse, and there is a trait that relates to autism in a way… in the way the neurocognitive profile is a… the 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 impairment… but the diagnosis is made when there is a difficulty that… I think… yes, 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.

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28. EL: It’s very “brainstorming”, this discussion 🙂
But I’m trying to follow you, but you said many things… very “medical” things, I did not follow all…
But let’s try to continue…
When you say the diagnosis…
I come back to my distinction: when you said “diagnosis”, for me it should not be “diagnosis of autism” it’s “diagnosis 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 diagnose “autism” because, it’s not…

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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 (?)…

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30. EL: I think… I’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 have – or may have sometimes – autistic 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 is “Asperger” but 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 disorders… or 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…

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31. CS: But I think it’s similar for many other conditions… If you take for instance dyslexia…
Many of us… we are not all the same… in 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 and… it’s… in certain cases, it creates an impairment… so the impairment is the defining feature that distinguish between persons that might may struggle a bit but may not have as severe… their ability may be good enough for them not to be feeling that there is a challenge… and when there is a challenge, then… and 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 condition… so that creates confusion for me…
Because when you say “autism spectrum disorder” there is an impairment, and I think autism has been utilized – in my knowledge – to define the condition, to define the cases where there is an impairment…
So you could… you could probably create… invent – even – another word to define the trait…
But I’m not convinced that we should use “autism”, 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 any… anything written, is there any association that is proposing this, is it really your conceptualization yeah?

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

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33. CS: To be honest, I would not use the same word… yeah…
Or maybe… yeah…
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 the “dyslexia” to define the trait and then, say that there is a “dyslexia disorder” when there is an impairment…
But to be honest I’m not so…
I don’t know…
I… at this stage, I…

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34. EL: It’s difficult… But, look… once again, I want to try to explain again…
Look, what I think is… when I listen to you I think that you… you 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 word “autism” *means* anyway “autism disorders” because…

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35. CS: No, I don’t say that, we can change it… It can be changed in the future, but nowadays it will create some confusion…
I’m not saying… I 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 use “disorder”… would you still…
I mean, in many cultures, disorder has a very negative connotation… It may not be the same in English, right…

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36. EL: I agree with you… now, in fact, look: we have two problems…
We have the problem with the word “autism” which is too much “charged” with the “disorders”, 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 word “disorders” is 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 have – it’s not a problem but – I have an *obsession* for order, and I’m not the only one, I think it’s for most autistics: they want – we want – order, I mean we want the words to be used like in the dictionary, we want Justice, we want… and so on, and you know about the kids who align their toys… because 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 not… and 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 me “because 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, so “disorder” it’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 rigid… like a “core”, a core which is very very *consistent* and very harmonious inside but which is… closed.
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 very… it has to be very harmonious…

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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 is – from my point of view – which is just a big mess :-)), for us to adapt, most of the times we have to conform ourselves, to “format” [to get “formatted”], to make concessions, to make arrangements… and 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… “vices” or things like this…
They cannot just come to the hiring interview and say “oh 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 the “Non-Autistic Troubles”, but it’s not very nice to say this, but they have to learn… let’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 even… like we say in French “Ils 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 us “ah 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.

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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 term… why not consulting the associations, the organizations of autistic people in the world, asking them “how 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 have – right now – I don’t have any idea (maybe tomorrow),
and the other problem is, what you say, that the word autism is… anyway is charged with deficiency which explains why people don’t get what I try to explain.

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39. CS: Not “deficiencies” but yeah…
[EL: “deficit”…]
I think this is… to be honest, in the context of neurodiversity, this term of “autism” is 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 to… in 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 are… there 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…

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40. EL: There is another problem – I’m just realizing – it is that given that people mix… they confuse “autism” and “autism disorders”, I mean, people who are autistic… how to say… autism 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 those “new 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 an “adult disability allowance / benefit”, but I think it’s not fair because it’s confusing everything, and that – like you said – do they really deserve it ?
Not so sure… I think that there are autistic people who really deserve a lot of care and a lot of…

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

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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…

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43. CS: Yeah, there are ways to compensate, right… I 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…
So… but I… to be honest, I will… I mean… this is interesting and I really… this 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…

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44. EL: But… from 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 you… you have some other things to do, something like this :-)…

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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 something… I 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…

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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 to… but with other people it could be…
[CS: Sure]

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47. EL: And just to finish, one thing, I come back to the word “autism”, 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 is… Kanner or Asperger who described “Autisten” [in German] and so on…
But… I’m sticking to my point which is that… I agree with the fact that “autism” is 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 the “narrow interests”… or God knows what, for example the difficulties of social interactions, in my point of view, it’s good!
It it’s a problem – of course – to 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 can… if 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 autism… maybe 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…

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48. EL: And another last thing because you have some things to do but, the last thing: when we say “oh 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 to… to work…
[CS: But it’s an impairment.]
It’s a problem, it’s difficult, but it’s still possible to work and to… and honestly, I would love to live in a building with only deaf people because… 🙂 You know what I mean… sometimes, most of, 90% of what people say is… totally… in my opinion, is totally useless… sometimes it’s better to be [“closed”]… so… it’s a matter of point of view.

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49. CS: Yeah yeah yeah, no I… yeah I… okay, it makes me reflect… and I just want to correct something, that I don’t want to say that autism is about deficit only… I just see that
[EL: Of course]
using autism in the broader sense, and having “autism spectrum disorders” can 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 using “autism” in the broader way to conceptualize that… is so… I don’t know, I need to think about it… I don’t know whether it is a good thing or not or…

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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 my “level” (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 who – on the contrary – admit that they have many difficulties, but it is something different, it’s distinct, it’s different [autism, and the difficulties]…

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51. EL: And another… two 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 really “THE Revelation” and 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 not… that 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…

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52. EL: And… a last example…
For example, the homosexual people: in the past homosexuality was seen as as disease and so on…
[CS: Yeah]
And… let’s… let’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 homosexual… Let’s take Alan Turing, and you put this guy now… he would say “yes 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 him “ah you have the gay disease” or “homosexuality disorder”, yeah “he has the homosexuality spectrum disorder” (HSD) :-)…
And from HIS point of view, he would say “yeah 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, and… YES, sometimes I can focus on a subject during one week… and so what ???…”

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53. CS: Yeah so maybe the other way of approaching this could be that we use the term “autism” to 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 autism… yes of course… I think that it’s…]
so that would be a clearer way of defining things.

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54. EL: Yes, it’s essential in my opinion, it’s really essential to really try to – even if it’s not clear – try to… I mean, like an experimentation… to make a really clear separation, a barrier between “autism” (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 text… maybe… if you read it (the first part about autism), if you read it again, maybe it will become more clear…

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55. CS: Yeah…So I… Okay now this is I mean this is useful, thank you for taking the time to share this with me, and to explain…
I will… I will… I will be thinking about how…
Because this is beyond the fact sheet… so the fact sheet is one, but I think it’s beyond that…
So I can… I can see how… I’m not sure to be honest… You know WHO so… it’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 term “autism spectrum disorders”, or maybe “autism spectrum conditions”, when referring to the ICD-11 spectrum of severe conditions…

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56. EL: I… sorry to interrupt you… I think that the WHO is about health and health problems, and very probably the WHO does not have to… even 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 taking “autism” out of the situation, and the WHO would just care about what they have to do, I mean the “disorders” or the challenges etc.

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57. CS: To be honest, I think this is an old version of WHO… Nowadays we’re not focusing on disorders, it’s also about wellbeing, it’s about development… So it’s about promoting health… So…so it’s a bit beyond that…

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58. EL: Yes but anyway, with my theory, autism has nothing…
[CS: Yeah you’re right… I understand…]
has nothing to do… has nothing to see with a health problem…
[CS: sure sure, sure… sure]
so, I mean… as 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)…
So… the disorder… yes the disorders they are existing and really they are…
Let’s try another word: the difficulties I prefer “difficulties”, the challenges or difficulties specific to autism, they are clearly existing and it’s clearly a big problem, and it has to be addressed – of course – and 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) “disorder” with 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 autism… It is (I know that the difference is subtle, it’s difficult) but (with) “autism in itself”, there is no problem.

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

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60. EL: The problem…
Concretely… concretely, the problem is that when… (I told you) when I try to explain such things to the French things, sometimes they tell me “oh 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…
So… I can… look, what I can do: I can tell them “okay, on their fact sheet there is a confusion and…”, but it’s not enough convincing.
I can’t tell them “but 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 says… they 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”, so… then it’s very difficult for us to try to explain that difference which… in 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]
because “the qualities of a disorder” doesn’t mean anything… it’s so obvious…

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61. CS: yeah yeah yeah… No I get it…
Yeah yeah… Thanks, 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, not “in person”, I don’t want to… Remotely, of course.]
Sure sure sure yeah yeah yeah I know I think we should do it and consult about this issue of terminology…
It’s… we are a bit tight with terminology because the WHO is… there 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…

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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 which – with a good intention, to remove disorder – but in fact it creates a problem and no one thought about it :-)…
[CS: (laughing)]
but I’m trying to explain…

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63. CS: Sure sure sure… all right… thank you so much!

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64. EL: Thanks to you!

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65. CS: I really appreciate… and all the efforts to let me understand it 🙂

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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 🙂

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

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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.

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69. CS: Yeah 🙂 I am… I don’t know I think of myself as a… I… I don’t like to speak, but I I like to listen…
So I… I’m not sure I can change… I mean, I have… I don’t know… I just… I’m sincere when I say that I appreciate the opportunity to listen to you 🙂

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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

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

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4. Some further explanations after the meeting

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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 of “cons” and “pros” of autism, but also with other ways or “images”).
  Once you hear it, all should be clear and obvious, and you should understand that (sorry) it is certainly nonsense to say that the “cons” of a thing “A” are that thing “A”.
• 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 that “my point” is not related to “variability”, 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 more “from autism” or “from 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, or “cons”, 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 very “mild” cases). (All that is explained in my long document.)

Thank you very much.
Have a nice evening !

Eric L.

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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 say “autism”, some people think they hear “artist” or 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.

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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 between “autism” and “autism 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.

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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 have “autism” and
   (0:24) to talk about the “problems of autism” like we talk about also the “qualities of autism”
   (0:30) (Not 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 wording “autism” and
   (0:47) for 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 or “Autism 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) So 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) one aspect of autism, let’s say the negative aspect, is the disorders, what is called by medicine “autism spectrum disorders”. (…)
   (2:19) (…) But it’s not the same (as “autism”) 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 named “A” is 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 to 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 challenged – so 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 say “the bad sides of myopia” and “the 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: those problems, and the parents, and all that.
    (7:54) So maybe you don’t know enough… I mean… the positive side…
    (8:04) The first time I spoke at the WHO, I remember there was a doctor (M. Yazami) who told me “Ah, but you are not representative because your autism is light” and so on…

12. That’s right. But anyway, anyway in autism there are good sides, even for those who are severely challenged – and it would be too long now in the monologue, but we it would be extremely interesting to try to discuss about this, and I could elaborate my point about this.

13. (8:39) Another thing that I wanted to add: when you say that the parents and the caregivers are afraid about…
    The neurodiversity approach and the things what I say, it is rather similar…
    (8:57) It’s not the same but it’s the same direction…
    They [the parents and caregivers] are afraid but, look, the neurodiversity movement, I don’t know exactly what they say and even themselves, they are not very clear…
    (9:12) I have even seen recently on a publication of [a neurodiversity association]: “We are not disabled. We are not persons with disabilities”…
    (9:24) Okay, some of them, maybe most of them, they don’t have any disability, why not…
    (9:33) But in that case, they should not be part of the national disability public instances.
    (…) I mentioned it, and they corrected the sentence. (…)
    (9:49) What I mean is that the parents should not be afraid.
    (9:57) (…) [because] what we are trying to do with the Autistan concept, we don’t have any intention of minimizing or negating the existence of the troubles or the disorders, the challenges, the problems, the difficulties, and so on, on the contrary.
    (10:27) Of course we have to to see and to say what is existing.

14. (10:33) However, our approach of how to solve those problems is non-defectological, and this changes everything.
    (10:44) It’s not based on medicine, such things or treatments.
    (10:49) I don’t say that [these things] are completely useless, but there is another way to solve those problems.
    (10:58) They should not be afraid by this, so sorry I spoke a lot again, thank you.

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4.1.5. ChatGPT synthesis of audio message N°2

The speaker begins by emphasizing a simple approach to understanding autism, highlighting its positive and negative aspects. They argue for using the term “autism” to encompass both the challenges and strengths of the condition, while reserving terms like “autism spectrum disorders” for the negative aspects. They acknowledge that the negative aspects of autism are debatable and often a matter of perspective, but stress that challenges and difficulties associated with autism are undeniable.

The speaker underscores the importance of not equating the negative aspects of autism with autism itself, as it perpetuates a narrow, negative perception of the condition. They refute comparisons to other conditions like myopia or dyslexia, asserting that such comparisons oversimplify the complexities of autism. The speaker highlights the need to recognize the positive aspects of autism, even for those facing severe challenges.

Addressing concerns about the neurodiversity movement, the speaker clarifies that their approach does not negate the existence of challenges associated with autism. Instead, they advocate for a non-defectological approach that focuses on alternative methods to address these challenges. They reassure parents and caregivers that their goal is not to minimize the difficulties of autism but to offer a different perspective on how to approach and support individuals with autism.

In conclusion, the speaker emphasizes the importance of understanding autism in its entirety, including both its challenges and strengths, and advocates for a non-defectological approach to addressing the associated difficulties.

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4.2. Suggestion of an image (with a walnut) to help understand the “distinction” even better

[02:25, 21/01/2024] Éric L.: Good morning Madam, they say a picture is worth a thousand words, I’ve made that (within the framework of my French association), what do you think?

[06:00, 21/01/2024] Chiara Servili WHO-MHSU: Dear Eric
Thanks for sharing. It is useful to have this perspective as we continue to consider strategies to improve public health approaches and inclusion.

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4.3. ChatGPT’s synthesis of our 12 “comments on the items” added in section 3.2.

– Item 2: Softening the term ‘Autism Spectrum Disorders’ is interesting but contradicts our proposal’s aim, potentially perpetuating confusion

– Item 9a: The variability of autism spectrum disorders is a topic unnecessary for our ‘distinction’

9a. We argue that the vast differences in “level of social functioning” within autism are tangential to our main point, which is to convey that autism isn’t synonymous with the disorders, difficulties, or challenges it encompasses, irrespective of their variability or nature.

– Item 9b: Our ‘distinction’ is useful in avoiding fashionable amalgamations causing concern among parents

9b. Parents express apprehensions toward certain approaches, such as advocating neurodiversity or equating “autism” with “autism spectrum disorders” as merely benign human variations, fostering the misconception that autism spectrum disorders are innocuous differences.
This underscores the critical importance of distinguishing between autism and autism spectrum disorders, acknowledging their distinct nature and gravity while advocating for recognition of the strengths and qualities associated with autism amidst pervasive confusion.

– Item 10a: “Neurodiversity” rightly aims to “de-pathologize” autism but confuses it with “autism spectrum disorders” thereby conflicting with the recognition of genuine needs

10a. The concept of neurodiversity in relation to autism often fails to distinguish between “autism” and “autism spectrum disorders,” inadvertently downplaying the severity of the disorders by treating them as a unified entity and potentially neglecting the genuine needs of autistic individuals, which caregivers require essential support to address.

– Item 10b: The concept of ‘autism’ as a ‘simple human variation’ is not one extreme of a line with the challenges at the other end

10b. Contrary to common belief, there’s no inherent contradiction between acknowledging autism as a natural human variation and understanding its significant challenges.
These are separate but parallel concepts, not opposing extremes.
Recognizing autism as a natural variation, like being left-handed, doesn’t dismiss the associated difficulties, which often arise from societal structures unprepared to accommodate autism.
Highlighting this distinction is vital for a comprehensive understanding of autism and for providing appropriate support.

– Item 13: Comparing autism to myopia seems inappropriate

Drawing comparisons between autism and myopia is deemed inappropriate, as myopia lacks any positive qualities unlike autism.
Myopia, being a disabling condition, can be likened to autism spectrum disorders but not to autism itself, thus failing to aid in understanding the distinction between autism and autism spectrum disorders.

– Item 23: The term “autism” doesn’t inherently connote deficits; it can be seen as neutral traits. Similar to racism, erroneous negativity shouldn’t deter usage of the names

We argue for retaining the term “autism” to refer to a natural trait rather than loading it negatively with disorders, difficulties, or challenges, emphasizing the qualities inherent in autism rather than pathologizing it.
This approach aligns with our discussion in section 1.1.2. of the letter, where we elaborate on various characteristics of autism that, when viewed outside of societal judgment, appear more as qualities than disorders.
While the current association of “autism” with defects stems from pervasive confusion, our mindset refrains from automatically attaching negativity to the term.
We draw a parallel with racism to illustrate the evolution of societal perceptions and advocate for a similar shift in understanding autism.

– Item 31a: Comparing autism to myopia seems irrelevant

31a. Comparing autism to dyslexia presents a fundamental challenge as dyslexia lacks any inherent advantages, akin to myopia.
Variability in severity within dyslexia mirrors the heterogeneity within the autism spectrum, emphasizing the discussion around the associated disadvantages rather than the essence of autism itself.
The progression of autism spectrum disorders with age and circumstances underscores these disadvantages, highlighting the need for nuanced understanding.

– Item 31b: There is no problem with using the term ‘autism’ to describe both its nature and its components (the positive and the negative aspects)

31b. The consideration of using the term “autism” to describe a trait or autistic nature raises questions about reducing confusion, particularly given its association with “autism spectrum disorders.”
However, the reflexion often begins with the disorders rather than the essence of autism, complicating perceptions.
It’s essential to recognize autism as a whole with both advantages and disadvantages, akin to various concepts where a term is used to describe both positives and negatives.
Therefore, the reluctance to use “autism” to describe the entirety stems from the misconception that autism equates solely to its disorders, a notion that requires correction.

– Item 39: The details regarding ‘autism spectrum disorders’ are not relevant to our main purpose, which is to distinguish them (whatever they may be) from ‘autism’

– Item 41: Our differentiation between ‘autism’ and ‘autism spectrum disorders’ is useful for accurately assessing the challenges and support needs, thereby preventing abuses

One of the many benefits of our proposed distinction, not exhaustively enumerated in our letter due to their abundance, is the clarity it provides regarding the potential for individuals to be autistic without significant associated disorders or disabilities, and thus without substantial support needs.
While conventional gradations such as levels 1, 2, and 3 typically denote the severity of disorders and support requirements rather than a degree of autism itself, there exists a correlation between the two (that is not always proportional).
Assessing a precise “degree of autism” is challenging, and the manifestation of difficulties associated with autism spectrum disorders can vary depending on context and age.
Consequently, an individual may exhibit a consistent “degree of autism” throughout their life while experiencing disorders or challenges only under specific circumstances.

– Item 45: The reflections are complicated and confusing for the WHO because fundamental concepts about autism are erroneous and/or based on confusions, such as the one we explain (and the introduction of “neurodiversity” further complicates and confuses)

Current approaches to autism, including the concept of neurodiversity, may unfortunately be entangled in various confusions and uncertainties.
Attempting to comprehend autism within these frameworks, which are often vague, evolving, and at times contradictory, can lead to confusion.
We advocate for a return to fundamental principles, emphasizing the importance of clear terminology, precise delineation of components, and understanding the relationships between them.
This is not merely a matter of semantics but a necessary step to avoid fruitless debates stemming from ambiguity and misrepresentation of concepts.

– Item 53: Clear understanding of named concepts shall precede optimizing their designations

While the expression “autistic person with difficulties” may have been considered during the conversation, we caution against its use due to the variable nature of difficulties experienced by autistic individuals, which can arise unpredictably.
This approach risks implying that only some autistic individuals face difficulties, when in reality, challenges are prevalent across the spectrum.
It may be more productive to focus on difficulties, disabilities, and needs rather than categorizing individuals based on perceived levels of difficulty.
While efforts to evolve language to be less stigmatizing are commendable, it’s important to avoid semantic complexities that could obscure understanding.
We advocate for clear, pragmatic language that accurately represents the diverse experiences of autistic individuals, acknowledging both challenges and strengths.
Thus, it’s crucial to differentiate between “autism” and “autism spectrum disorders” while striving to understand and address the multifaceted needs of autistic individuals without succumbing to oversimplification or ambiguity.

– Item 55: Appreciating your openness to adjusting terminology to accurately reflect “autism disorders” or “autism condition” in efforts to prevent confusion with “autism”, and kindly requesting to update your pages accordingly

We deeply value your willingness to consider our conversation’s insights and make adjustments to use terminology that accurately represents “disorders” or “condition,” thereby mitigating potential confusion. It would be immensely helpful if you could update your pages concerning the general depiction of autism spectrum disorders, which aligns with the core objective of our initiative. The substitution of “conditions” for “disorders” appears promising and more suitable, in principle. However, it’s crucial to ensure that your content doesn’t inadvertently imply that autism solely comprises the disorders and challenges associated with it.

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4.4. Synthesis of all our audio and written comments made after the meeting (i.e. of all the chapter 4)

4.4.1. Comprehensive Understanding of Autism

The comments delve into the multifaceted nature of autism, emphasizing the importance of a comprehensive understanding that goes beyond simplistic categorizations.
They stress that autism is not a monolithic entity defined solely by its challenges but rather a diverse spectrum encompassing a wide array of strengths, abilities, and characteristics.
By acknowledging this complexity, the comments aim to challenge prevalent misconceptions and promote a more inclusive perception of autism within society.

4.4.2. Nuanced Terminology and Language

A significant focus of the discussion revolves around the use of precise and respectful language when discussing autism.
The comments advocate for terminology that accurately reflects the diverse experiences of autistic individuals, while also avoiding language that perpetuates negative stereotypes or reinforces a deficit-based narrative.
Suggestions (by the WHO) include reframing terminology from “disorders” to “conditions” to better capture the varied manifestations of autism and to move away from pathologizing language that undermines the inherent dignity and worth of autistic individuals.

4.4.3. Differentiation between Autism and Autism Spectrum Disorders (ASD)

Central to the discourse is the need for clear differentiation between autism and ASD. While acknowledging the validity of diagnostic classifications and the associated challenges faced by individuals with ASD, the comments caution against conflating autism with its associated disorders.
They argue that such conflation oversimplifies the complexity of autism and perpetuates a narrow understanding that fails to recognize the unique strengths and capabilities of autistic individuals.
Instead, they advocate for a nuanced approach that acknowledges the inherent diversity within the autistic community and respects the individuality of each person’s experience.

4.4.4. Metaphors and Analogies to Illustrate Complexity

Metaphors and analogies are employed throughout the texts to illustrate the intricate nature of autism.
One such metaphor likens autism to owning a rare car, highlighting that just as a unique vehicle may have both distinctive features and occasional mechanical issues or other problems, autism encompasses both strengths and challenges.
These metaphors serve to convey the idea that autism defies simple categorization and requires a nuanced understanding that embraces its complexity.

4.4.5. Call for Understanding and Inclusion

Within the comments, there is a strong emphasis on the need for greater understanding and inclusion of autistic individuals within society.
While the concept of neurodiversity is mentioned, it is not advocated for as a primary solution.
Rather, there is a call for clear and pragmatic approaches to inclusion that prioritize the diverse needs of autistic individuals.
The focus is on creating environments that accommodate these needs and promote acceptance and respect for autistic individuals’ unique perspectives and contributions.
By fostering a culture of inclusivity and understanding, the texts aim to address the challenges faced by autistic individuals and create a more supportive and equitable society for all.

In essence, the synthesis encapsulates a rich tapestry of ideas aimed at fostering a more nuanced and inclusive understanding of autism.
By challenging prevailing narratives, advocating for respectful language, and embracing the diversity of autistic experiences, the texts seek to pave the way for a more equitable and supportive society for all individuals on the autism spectrum.

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5. Overall conclusion

To do

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5.1. On the “confusion of autism and disorders” on the general pages of the WHO

To do

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5.2. On the opinion of Chiara Servili (of the WHO) on our distinction between “autism” and “autism disorders”

To do

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5.3. On the improvement of understanding of various other aspects of autism during our conversation

To do

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5.3.1. To do

5.3.2. To do

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6. What to do next

To do