Can we know, with certainty, what autism is?

   How to define Autism?

This question is a paradox. A definition allows us to understand something. And society is trying to understand autism. However, before explaining a phenomenon, one must first be able to describe it. The description presents in detail what is being studied. However, autism’s description has been changing for a century and continues to progress with the evolution of technology. Therefore, without a correct description (i.e.: timeless and unbiased), as explained on the Autistes.fr website: autism’s definition is a distraction. The first question has to be: “How do we describe Autism?”

   Can the (French) law describe Autism?

No. Because the law does not have as its purpose or principle to make a description. The law is either a bill or a proposed law. In both cases, autism cannot be described. The law only enforces rules. Let's take for example the Chossy law of 1996. It states:

“[Translation] Any person with a disability resulting from autistic syndrome and related disorders benefits, regardless of age, from multidisciplinary care that takes into account their specific needs and difficulties. Adapted to the person's condition and age, this care can be educational, pedagogical, therapeutic and social. The same applies to persons with multiple disabilities.”

The Chossy law does not even describe autism as a disability. This law concerns the care of people who have a disability linked to "autistic syndrome". This term covers "autism spectrum disorder (ASD)" and anything that resembles it. Thus, in France, a doctor starts by diagnosing ASD or something similar. Then, the "Maison départementale des personnes handicapées (MDPH)" analyzes the medical file and decides if there is a disability. Finally, the Chossy law refers to the taking in charge of the disability. There is no legal text describing autism.

   Can the DSM-5 and ICD-11 describe Autism?

Before answering this question, we must first explain the French vocabulary problem of these manuals. The medical vocabulary is quite comprehensive as evidenced by the nuance of the words: trouble, désordre, désaises, maladie, nausée, affection, mal, impairement, déshabilité, handicap, morbidité, etc. in French; and trouble, disorder, diseases, illness, sickness, malady, ailment, impairment, disability, handicap, morbidity, etc. in English. However, medical language travels a lot with time. And some words see their meaning evolve or are mistranslated. Let's take the “DSM”, which is the abbreviation for “Diagnostic and Statistical Manual of Mental Disorders”. The word “disorder” is poorly translated into French by "trouble". However, the DSM uses “mental disorders” and is refers to many more medical issues that "trouble". In the DSM-5, the American Psychiatric Association (APA) mentions neurodevelopmental disorders, diseases, “disorder not otherwise specified” or “drug-induced disorder” categories, and any condition whose “mental functioning” involves hospital care. There are more than just "trouble" in the DSM-5. There is also a problem with the “ICD”, which stands for “International Classification of Diseases”. The English word “diseases” is mistranslated in French by "illness". However, in the ICD-11, the World Health Organization (WHO) mentions neurodevelopmental disorders, behavioral disorders, tumors, sleep disorders, there is a category “pregnancy, childbirth or puerperium” or “sexual health conditions”. There are not only illness in the ICD-11. Finally, in France, in everyday life, there are other problems with vocabulary. For some people, the words “disorder” and “illness” are synonymous, whereas they are two very different concepts. A illness is an alteration of the state of health, which implies suffering and the hypothesis of a cure. While, in the field considered here, a disorder identifies a:

“Clinically significant disturbance in an individual’s cognition, emotion regulation, or behavior that reflects a dysfunction in the psychological, biological, or developmental processes [...]” (DSM-5).

There are also other criticisms. Among others, does a “dysfunction” have to be recognized by society, or in an objective way? Or, why do some scientific articles use "pathological" vocabulary from clinical research, instead of using scientific vocabulary, thus neutral (without attribution bias)? Now, if you want to find out why all these vocabulary problems are still not corrected, I suggest you take steps yourself to change that. However, if you are not interested in participating in the rewriting of a part of the French medical vocabulary that has been in use for 60 years, you have to wait for others to do it, or for French medicine to decide to correct itself...

Thus, out of laziness, incompetence, dishonesty or other reasons; because of whatever pushes French medicine not to correct itself, it maintains a degrading vocabulary. And this problem promotes pathological prejudices about autism.

So... Can the DSM-5 and ICD-11 describe Autism?

No. The AAP and WHO detail, among other things, clinically significant disturbances in the context of autism. Specifically, the DSM-5 and ICD-11 describe (more or less well) autism spectrum disorders, which occur in a portion of, but not all the autist.

In the DSM-5, the AAP presents ASD with “Persistent deficits in social communication and social interaction” and with “Restricted, repetitive patterns of behavior, interests, or activities.” These criteria appear “by all of the following, currently or by history.” Therefore, the AAP also admits the existence of autists individuals who do not express ASD, either in the present or in the past. Next, regarding symptom severity, the DSM-5 adds:

“The severity specifiers (see Table 2) may be used to describe succinctly the current symptomatology (which might fall below level 1), with the recognition that severity may vary by context and fluctuate over time.”

Level 3 severity is labeled "Requiring very substantial support", Level 2 "Requiring substantial support", and Level 1 "Requiring support". By inference, the level below Level 1 is Level 0 "Does not require support". In addition, the AAP takes the liberty of reminding us that a diagnosis of ASD does not necessarily imply a recognition of disablement:

“The descriptive severity categories should not be used to determine eligibility for and provision of services; these can only be developed at an individual level and through discussion of personal priorities and targets.”

Finally, the DSM-5 refers to the existence of autonomous autists:

“[...] individuals with autism spectrum disorder live and work independently in adulthood; those who do tend to have superior language and intellectual abilities and are able to find a niche that matches their special interests and skills. In general, individuals with lower levels of impairment may be better able to function independently. However, even these individuals may remain socially naive and vulnerable, have difficulties organizing practical demands without aid, and are prone to anxiety and depression. Many adults report using compensation strategies and coping mechanisms to mask their difficulties in public but suffer from the stress and effort of maintaining a socially acceptable facade."

Nevertheless, without the expression of clinically significant disturbance, the DSM-5 cannot diagnose these autonomous autists.

As for the ICD-11, the WHO describes autism spectrum disorders with “persistent deficits in the ability to initiate and to sustain reciprocal social interaction and social communication” and “a range of restricted, repetitive, and inflexible patterns of behaviour, interests or activities that are clearly atypical or excessive for the individual’s age and sociocultural context”. ICD-11 also qualifies the time of diagnosis:

“the disorder occurs during the developmental period, typically in early childhood, but symptoms may not become fully manifest until later, when social demands exceed capacities.”

Thus, ICD-11 refers to the onset of ASD either in childhood or later. An (adult) with ASD manifests ASD when social demands (justified or not) exceed his or her abilities. However, without this overreach, the autist does not have ASD. And without a disorder, an autist is still an autist, but does not receive a diagnosis. The DSM-5 and ICD-11 only describe (more or less well) ASD, not autism in general.

For a long time, clinical research has believed that its ability to recognize the pathological expression of Autism is sufficient to describe Autism as a whole. To convince themselves that they are right, many physicians, such as Leo Kanner, have knowingly pathologized certain expressions of autism. In doing so, they can deny any approach to autism outside of medical research. For others, who are funded to cure diseases confused with autism in the 1970s, there is no point in dissociating autism from their research, as the word autism brings funding more easily. There are also some pediatricians who make false diagnoses of ASD, because sometimes the diagnosis of ASD allows for better support services. So some children in need, who are not autistic, can get better help with a false ASD diagnosis. Then, there are also diagnosticians who overzealously assign ASDs to autists children who have never had a clinically significant disturbance in the context of autism. Because they know that the diagnosis of ASD is a free pass that in some cases allows autists to assume and flourish. Too often, autists who do not have a diagnosis are stigmatized by society and the autist shamed. “Shameful autists” have an ASD and comorbidities. They have a lot of pathological prejudices about autism. And they confuse their expression of autism (in ASD) with their disorders. Therefore, they see autism as the source of all their problems. Moreover, they don't want to understand the difference between autism and ASD, because, they would no longer be able to complain about being autist in the media and social networks. More seriously, they would be forced to identify themselves with another disorder (sleep, anxiety, etc.) in addition to their ASD. A situation that would be too degrading for them, according to their pathological prejudices. Yet, distinguishing autism from ASD would allow them to have more effective support, targeting their real individual difficulties, rather than stigmatizing autism and autists.

   Can Autism Spectrum Disorders describe Autism?

No. Autism Spectrum Disorders describe the expression of autism in a pathological context. However, autism is not exclusively expressed in a pathological context. Even the DSM-5 and ICD-11 admit this. Therefore, it is not autism that is diagnosed, but autism spectrum disorders. As a whole, autism is not identifiable with “clinically significant disturbances” as pointed out by various autism movements around the world. Or the existence of autists who receive a late diagnosis (such as Anthony Hopkins), for a present or past ASD. Autists who have never been diagnosed with ASD (such as Hugo Horiot). And autists, whose social success or autonomy (such as Elon Musk), do not characterize any “dysfunction”. As well as, the psychiatrist Eugen Bleuler (1857-1939), who is at the origin of the word “autism”. He speaks, among other things, of an “autistic thought” participating in the imagination and which would be common in the intellectual professions. The psychiatrist Grounia Soukhareva (1891-1981), who had been studying autism since 1925 noticed that autists adolescents do not need to be cured, but only stimulated differently. The psychiatrist Hans Asperger (1906-1980) studied and defended autism during the Second World War. Autist himself (Lyons et Fitzgerald (2007)), he was the first to speak of a spectrum of autism, ranging from a “special gift” with “social inconveniences”, to an “autism by automatism” characterized by intellectual disability. The psychiatrist Lorna Wing (1928-2014), who in 1980 refuted the pathological prejudices about autism created by psychoanalysis and Leo Kanner. The sociologist Judy Singer who, in her thesis, makes autism a neurological diversity rather than a “dysfunction”. Researcher Michelle Dawson who fights the pathologization of autism with science. Professor of Psychiatry and researcher Laurent Mottron, who wrote the book “Autism: Another Intelligence: Diagnosis, Cognition and Support for People with Autism without Intellectual Disabilities”… the list of researchers or professionals who explain autism as something other than a disorder continues for a long time. The conclusion is that autism is not scientifically identifiable with "ASD". Autism is a human diversity, like freckles or skin color. Thus, among humans, there are autists and non-autists. And among autists, there are those with ASD and those without.

Unfortunately, this notion of autism (different from ASD) is not widely known. In the English-speaking world in particular. Some autists, scientists or neurodiversity activists still confuse autism with autism spectrum disorders. This confusion between autism and ASD creates an unbelievable situation that blocks all social progress for autists. Indeed, in order to better respect autism as a human diversity, some autists seek to remove ASD (which they lump together with autism) from the DSM-5 and the ICD-11. However, this causes paradoxes. The Commission for the Rights and Autonomy of Disabled Persons can only recognize a disability if the difficulties experienced concern a disorder. So, if ASD (confused with autism) is taken out of the medical field, autists with ASD will no longer be able to receive aid, and this is problematic. Autistes.fr notes another inconsistency:

“And so, taking ASD out of the DSM is that autism is perfect, it can't have disorders, so autism is perfection. Or it's that autism can only have disorders that are not autism disorders [...] 

So, taking ASD out of the DSM, the goal is that autists only have "non-autistic" disorders: only disorders identical to those of non-autists. Well, in this case, autists are non-autistic. [...]

They (we) will be given benefits for troubled non-autism [Face with tears of joy].” @frdm

Only sometimes autists can also express their autism in a pathological context. Taking ASD out of the medical setting would prevent autists who manifest ASD from having potential disabilities recognized in order to receive support.

In conclusion, clinical research discovers autism by addressing its pathological expressions. However, the DSM-5 and the ICD-11 now mention the existence of autists without clinically significant disturbances. These autists without ASD are not diagnosed because they do not have a disorder. They are therefore invisible to medical research. The DSM-5 and ICD-11 describe only a portion of autists. “Autism spectrum disorders”, formerly called “pervasive developmental disorder, Asperger's syndrome, Kanner's autism, savant syndrome, autistic syndrome, autism symptoms, autistic childhood disorder, infantile psychosis, autistic psychopathy, infantile autism, schizoid personality disorder” … All these names (some from the medical lexicon and others from the French fanciful lexicon) do not describe autism, but possibly, for some, an expression of autism. ASD is a manifestation of autism in a pathological context, and of autists who are pathologized (without the cause being specified in the DSM-5 or ICD-11). Autists with ASD do not describe autism on their own, for there are also autists without a diagnosis or without a disorder as inferred (DSM-5, ICD-11). Only scientific research, which is not oriented to necessarily see disorders in autists, can try to describe autism.

   Can scientific research describe autism?

Yes, scientific research can describe autism. Scientific methodology has the means to study autism properly. Scientists who engage in research on autism can come up with an objective and timeless description of autism. This is in contrast to clinical research, which is only able to see autists in relation to disabilities. Medicine is a discipline that aims to relieve, while science aims to describe things and make them understood. Scientific research has the means to study all autists. Autism is then examined from all angles, not only from the medical one.

Has scientific research ever accurately described autism?

No. Unfortunately, today's means of investigation are not sufficient to develop a complete description of autism. However, such a description would allow us to try to explain autism. And the understanding of autism is very important, in order to fight against institutional mistreatment, inadequate aids, golem effects, pathological prejudices, scams, stigmatization… This is why research continues, but scientists have only an incomplete notion of autism at the moment. To narrow the error of approximate descriptions of autism, researchers employ refutation. Refutation “is a reason arguing against a premise, argument, or conclusion.” (Wikipedia). The more errors in the perception of autism are eliminated, the more research is likely to better describe autism. In other words, the more the questions around autism are resolved, the better the research is able to describe autism.

Among other things: in accordance with scientific methodology, several studies (here1, here2, here3, here4, etc.) establish the absence of an alleged link between autism and vaccines. Other studies show that the most common expression of autism is not associated with Intellectual disability. Another article shows that autism involves just over 4% of the human genome. In society, autists can (often?) simulate “non-autistic” behavior. Autism has existed since prehistoric times. Therefore, it seems implausible to believe that autism is rare, or that autism exists because of modern environmental ills. Also, to answer this criticism of incompleteness, theorys appear. The double empathy theory explains to us “a breakdown in reciprocity and mutual understanding can happen between people with very differing ways of experiencing the world.” There is also the intense world Theory , which concludes: 

“In contrast to other deficit-oriented theories of autism, the Intense World Theory points out that enhanced brain functioning may lie at the heart of autism. [...] which may turn the world too intense and even aversive and lead to many of the autistic symptoms including withdrawal and social avoidance."

Monotropism, on the other hand, views autism as:

“the tendency for our interests to pull us in more strongly than most people. It rests on a model of the mind as an ‘interest system’: we are all interested in many things, and our interests help direct our attention. Different interests are salient at different times. In a monotropic mind, fewer interests tend to be aroused at any time, and they attract more of our processing resources, making it harder to deal with things outside of our current attention tunnel."

Faced with this incomplete notion of autism in research, scientists are left wondering. Even some autists authors indulge in hypotheses. In "L'autisme expliqué par un autiste" the author Thibaud Moulas links autism to “a high level of intensity (either very high or very low; nuances require more effort) in actions performed, emotions, senses, or interests” and “more rational behavior (more easily objective, less impacted by community) and less instinctive behavior (emotions and social codes based on the implicit can be poorly integrated).” But let's skip the assumptions and get back to the proven. The brain morphology of autists is not different from that of non-autists. However, there is less synaptic pruning in autists. The brains of young autists appear to develop differently, with a larger region associated with language. Brain organoids from autists children tend to be larger than those of non-autistic children. Many studies focus on the functioning of the nervous system (white matter, gray matter, synapses, central and peripheral nervous system, etc.), but the technologies to study the brain are not yet developed enough to lead to a relevant description of autism. Moreover, there is a persistent problem: the use of pathological vocabulary (transmitted by the medical community) in scientific research on autism. Several researchers, such as Laurent Mottron, mention the interest of changing the scientific vocabulary on autism. Some scientists use the wrong vocabulary to talk about autism. Is it because of conflicts of interest, incompetence, or to conform to a literary mafia? It is not clear. To address these problems, autists scientists propose a solution:

“More autists researchers are needed worldwide to bring more global attention to their viewpoints on autism.[...]

To increase accountability in autism research in general, it is necessary to create clear regulations on ethical engagement with the wider autists community, using existing guidelines as the basis and aiming for global consensus. Increasing transparency in autism research, tackling conflicts of interest, and increasing autists inclusion is crucial in developing accountability and trust."

   Can autists describe autism?

No. Neither an autism club, nor an autism political movement, nor an autism association can describe autism. In science, "quantity" never trumps "quality". To describe autism, a few hundred (competent) scientists, specialized in autism research, are always more relevant than a billion autists. “One billion”? Yes, because the proportion of autists in the world estimated at 1% is a prejudice. This prejudice is based on the confusion of autism with rare illness. The reality is quite different, 5%, 10%, 15% ... nobody really knows. In fact, to know precisely how many autists there are in the world, the description of autism must be completed. Without a correct description of autism, it is impossible to define autism. And without a definition, it is impossible to recognize all autists. All we know today, with the evolution of research, is that autism is not as rare as 1% of the population. In any case, even if one hundred million autists participate in an opinion poll (after verifying the participation of one hundred million autists). The opinion poll is never equivalent to scientific, unbiased and verifiable evidence. Opinion polls, just like associations, are interesting and useful to make the voice of autists heard, in the social or political fields. But the opinion poll also has its flaws (Wikipedia explanation). Everyone has an opinion on something. The fact that many people share an opinion, or that a majority of people share an opinion, does not make it more true. And not all opinions are equal. The most important thing is the evidence that makes up the view. Not the way the opinion is presented. To be able to present a description of autism objectively, without spurious testimony of anecdotal evidence, without conflict of interest, and accepting criticism (and to evolve), one must use scientific methodology.

Can some autists describe autism?

If they are scientists doing research on autism: yes. But, without that: no.

Have autistic scientists ever accurately described autism?

No. For the same reasons mentioned above, regarding the notion of scientific research.

   In summary, what can be said about autism?

It depends on the skills of the individual with whom you are sharing the information.

• Is the person you are sharing with capable of hearing arguments?

The diversity of autists is very large. Generalizations about autism based on health are wrong. Autism is not a illiness, disorder or disability. Autism has nothing to do with vaccines, GMOs, prenatal alcohol exposure, 5G, psychoanalytic fantasies, or intellectual disability. Autism is a human diversity like freckles are. Autism is not as rare as we think (maybe 10% of humanity?) and has existed since prehistoric times. Your favorite soccer player may be autist without knowing it. From a biological point of view, autism involves a thousand genes. Autism is differentiated from non-autism through microscopic analysis of the nervous system and its surroundings. Autists would function “more easily (?)” in a “more intense (?)” way. Knowledge and means (including imaging) are not sufficiently advanced to describe autism more precisely. In the meantime, autism can be explained, as best we can, as a “more sustained (?)” way of receiving, conceiving or transmitting information or a sensation. There are many theorys and questions, but we cannot do otherwise for the moment. Research is progressing. Autism is not a trait, a level of intelligence or a personality. Autism should not be seen as the strength or weakness of autists, but rather as the “neural stuff (?)” that influences, sometimes in different ways, the strengths and weaknesses of autists, because autism is expressed differently according to the autists (their character, their health, their experience) and their environment (the positive or negative influence). Some autists have autism spectrum disorders. These are disorders specific to autists. ASDs can evolve over time. Medicine, based on the current state of scientific knowledge, tries to describe ASDs as well as possible with the DSM-5 and the ICD-11. But progress remains to be made. Socially, autists (with and without ASD) do not have the means to flourish, because of many pathological prejudices towards them. Pathological prejudice creates institutional abuse, golem effect, inadequate help, stigma, etc. And the media doesn't help, because it portrays autism via caricatures. To try to change this, autists are organizing themselves, in associations as well as in science, to defend themselves. But society has difficulty in changing, because there are several problems: conflicts of interest, incompetence, dishonesty, fallacious arguments, bad vocabulary, etc.

• Is the person you are talking to stuck?

Is your interlocutor stuck on pathological prejudices about autism? In that case: Good luck.

   What to do in the meantime?

If you want to act, join (?) autism research. Change the ethics, the vocabulary and the scientific technology? If not, find out how to create an association practicing “representativeness for autists”. Because only an association practicing representation for autists has the means to promote autism in society.