Autism is primarily a divergent way that human brains work compared to the most common brain type “neurotypical”. More accurately, Autism is a collection of traits that are human traits, but either hyper (above) or hypo (below) the common neurotypical person in strength and presentation. While Autism identity is not inherently a disability, the medical model defines it as such.

Here we are going to look at what the Medical Model of Autism is, why it is that way, and how that builds in some stigma into the system regarding Autistic People. Lastly we will look at Autism Identity and Autism Socialising, which when you consider that the primary trait for Autism is assumed tobe “cannot socialise”, shows the limitations of the Medical Model.

Autism According to Medicine (DSM 5 TR, ICD 11)

It is important to recognise that the definition for diagnosis is “the identification of the nature of an illness or other problem by examination of the symptoms.” When Medicine defines Autism, they define it in terms of “illness” and “problem”. If you are working out which people to medically spend money on, then those who have a problem are your target. An artifact of this, though, is that the medical definition for Autism does not allow people who don’t have a problem to fail to meet the medical diagnostic criteria for Autism.

The DSM is the USA Diagnostics and Statistic’s Manual for Mental Disorders, which is strongly influential in the Western World for how we see mental health. the ICD is the World Health Organisations manual for how all physical and mental conditions are defined, trying to be agnostic to race, creed or country – an attempt to be more universal.

In Australia, while we are supposed to base medicine off the ICD, in mental health, we often default to the DSM and then look up a comparable code for the ICD for the government systems. As such, we will look at the DSM first, then compare that to the ICD.

DSM 5 TR In a nutshell: To be diagnosed with Autism Spectrum Disorder, you must have significant problems in both a) social interactions across multiple contexts (not just one) AND b) have restrictive / repetitive behaviours / movements that get (or got) in your way in 2 different ways that reflect the examples given (below) that are c) somewhat present in early childhood (not recently developed), d) are disabling in some way and e) aren’t explained better by some other (superior) conditions such as Intellectual Disability.

Autism is described in the DSM as Autism Spectrum Disorder, as it now incorporates what used to be called

• Autism Disorder
• Asperger’s Disorder
• Pervasive Developmental Disorder (not otherwise specified)

As we now recognise that these are just different names for the same condition. This is outlined in Criteria E.

For the OCD 11 In a nutshell: To be diagnosed with Autism, you must have significant problems in both a) social interactions across multiple contexts (not just one) AND b) have restrictive / repetitive behaviours / movements that get in your way in at least one of the ways that reflect the examples given (below) that are c) somewhat present in early childhood (not recently developed), d) are disabling in some way.

[Click > to expand for the expanded text of each criteria, follow the link at the bottom of each section to view the source with the Full Text]

Differences:

While ICD 11 still has the basic features of “A social difficulties + B some kind of restricted / repetitive behaviour, that C started in childhood and are D problematic enough to be a disability”, it does not include E not explained by another condition such as Intellectual Disability then prompt you to add a code if the person meets the criteria for ASD and has an Intellectual Disability, which can be confusing.

ICD includes more examples that often reflect the real experiences that Autistic people experience comapred to the DSM.

DSM 5 TR calls the condition ASD – Autism Spectrum Disorder, attempting to remind people that the presentation is diverse and not singular, and that other conditions have now been encapsulated by this one phrase. ICD 11 continues to just call the condition Autism. My personal preference is to just call it Autism, as the requirement for the condition to be a Disorder is problematic for identity inclusion. We cover that below in Medical Model Limitations.

Medical Model Limitations

In a nutshell: Because the Medical Model is deficit based so that medical funding goes to fixing problems, which requires the definition of Autism to be only based on problems and not on Autistic experience, which both can miss diagnosing Autistic People who have worked out how to use their Autistic neurology, and pushes the social and medical awareness of Autism to be a negative thing. For example, how this viewpoint infects research paradigms, who will frame positive aspects of Autism in negative lights.

The reaction that I get from parents when I disclose to them that their child is probably Autistic is interesting. Most of them are sad or upset, grieving for the hard life their child is going to have as a disabled person. It is hard to re-orient them to recognise that Autism is not inherently disabling, even though the medical model defines it such. Why does it do that?

Governments need to look at health economically, where there is a point where they decide that spending more money on improving the health of the people is no longer a good use of those tax dollars. A common government method of managing health is to put money where there are existing problems, which leads governments to view health in a deficit model – those who are less healthy get money, or Cure instead of Prevention. This leads the health industry to define medical conditions as conditions that are problems and not look at biological differences as positive for you, negative for you, or just a difference compared to others without the needer for positive and negative.

The Medical Model for Autism, as you can see from the above (Autism According to Medicine), is focused on ensuring that a person who experiences life in the ways described for each of the first 4 criteria experience these differences in a way that is disabling. That is, Autism is only considered medically real if you are disabled. The Australian Government provides funding for disability. The level of funding available depends on how disabled the individual is, and I certainly encourage this aspect of health care. Unfortunately, this has led to Autistic People being assigned Levels of Autism, where:

• Level 1 = Mild disability, weekly or fortnightly support worker
• Level 2 = Moderate disability, with frequent often pervasive support, often living at home or in share housing
• Level 3 = Severe disability, pervasive support, often living in supported accomodation

This does not match many people’s Autistic experiencer and is overly exclusive. People forget that these levels are more about funding for disability than about how Autistic you are. You either are Autistic, or you are not. There is no “mildly Autistic”. When people use that kind of phrase, what they mean is “you are barely disruptive and I don’t need to do much to help you”. This same person may be working very hard to compensate for various things, be exhausted and on the verge of Autistic Meltdown – but sure, they are mildly Autistic. Another person described as mildly Autistic may be capitalising on their Autistic traits, have only Autistic friends and only has to worry about how Autistic they are if they go to hospital. Their Autistic trait is something they can make lots of money off, and they make that money because of extremely Autistic they are. If we are looking at how strong the Autism shows in them, and we remove “disabled” from the definition of the Levels, we can have two people who shows a lot of strong Autistic traits be categorised as “wealthy and doing well” or “very functionally disabled”. They have the same “strength” of traits, but one is able to use them in society for money and self manage, while the other needs help to manage. The first would be categorised Level 1, because they aren’t a person who needs help and there is no Level 0; the other would be Level 3 due to their support needs. When we talk about the two people, commonly we would be saying that the second person is severely Autistic, while the first is mildly Autistic – which is misleading and wrong.

As a consequence to the deficit medical model, many studies on Autism phrase everything in terms of deficit.

“Even when autistic people show enhanced performance on visuo-perceptual tasks, like the Block Design task from the Wechsler Scales of Intelligence (Wechsler, 2008, 2014) or on the Embedded Figures Test (Witkin, Oltman, Raskin, & Karp, 1971), such strengths are invariably characterised as a by-product of a deficit in higher-order cognition (e.g. Frith & Happe’s ‘weak central coherence’, 1994).”

…

“This tendency to interpret autistic performance negatively is seen further in the research literature on autistic intelligence, which demonstrates that it is often the research design itself that is the cause of the issue. For many years, researchers interpreted autistic people’s low scores on, or noncompletion of, standard intelligence tests (e.g. Wechsler Scales of Intelligence) simply as confirmation of intellectual disability. In fact, however, once strength-informed intelligence tests (e.g. Raven’s Progressive Matrices) were substituted for the conventional ones, those
deficits disappeared.”

[Source: “Annual Research Review: Shifting from ‘normal ‘science’ to neurodiversity in autism science“]

In an experiment on what decisions Neurotypical and Autistic People made in two different circumstances, one where they were not observed, and another where they were, it was noted that Autistic People did not change their decisions if they were being observed while Neurotypical People did.

First, ASD individuals, unlike healthy control subjects, blurred the distinction between private and public conditions while making moral decisions. This finding not only coheres with the ToM deficit hypothesis of ASD individuals, but also agrees with previous findings using a tradeoff between suffering personal losses and donating to a good cause. Moreover, it extends the lack of attention to social reputation in autism to include an immoral context where individuals are confronted with a moral conflict between personal profits and a cost brought by benefiting an immoral cause. This first finding confirms that ASD individuals do not appear to take into account their social reputation while making immoral/moral choices consistently across contexts.”

That’s a strange way of stating that Neurotypical’s ethical principles change depending on if they think that their social reputation might be adversely impacted. That seems like a bad thing. Meanwhile, in this cohort, Autistic ethical principles did not generally vary – they stood by their choice without considering how someone else may judge them. That seems like a good thing with ethical principles. “Murder is wrong… unless you think it is okay?”

An Ethical Principle is defined as “relating to beliefs about what is morally right and wrong”.

If your ethics are so easily swayed, do you actually have ethical principles?

In summary, Autistic People were tested and found to have strong ethical principles while the cohort of Neurotypicals did not, and somehow the study describes this as Autistic people as defective “ASD individuals, unlike healthy control subjects, blurred the distinction between private and public conditions while making moral decisions … [which] confirms that ASD individuals do not appear to take into account their social reputation while making immoral/moral choices“.

[Source: “Right Temporoparietal Junction Underlies Avoidance of Moral Transgression in Autism Spectrum Disorder“]

It is hard to recognise that Autism is not inherently bad if the medical definition requires it to be bad to justify a diagnosis, and the research on Autism focuses primarily on the bad to support that definition, and will thus reframe the good as somehow bad.

Autism is not inherently disabling, but it can be. That is, some people who are Autistic are quite disabled and many people who are Autistic are not. The people who do experience a disability often are disabled due to co-occurring (comorbid) diagnoses, or complex secondary aspects of Autism that they have. This is a controversial view, as many industries and government definitions rely on providing services to disabled people who are funding primarily due to their diagnosis of Autism. Autism has become a basic short cut for expecting additional conditions that are effectively disabling. Recognising that Autism neurology is not inherently disabling risks many people who need funding for their functional capacity limitations to lose that funding simply because the systems use an Autism Diagnosis to imply that they are automatically functionally impaired rather than helping people who need help, regardless of their labels.

The consequence of this is that being Autistic has become synonymous with being disabled and it is just not true. You are disabled if you are disabled, and you can be Autistic and able.

The Importance of Autistic Identity

Above we have looked at how Autism is diagnosed and recognised, and that due to the deficit based Medical Model, an Autism diagnosis is based on how poorly a person is managing their life and society. That means that to be diagnosed Autistic you must be failing in some way. The actual definition for what level of failure is required is never actually stated and is up to the professional decisions of the assessors, which is why some people need to be assessed by a different assessor to get their diagnosis if the first assessors threshold for “disabling” is arbitrarily different. By defining Autism as a Disorder and requiring the person to be disabled, that person so diagnosed should, by definition, get support for their disability.

This leads to a nasty tautology (circular logical argument). The Autism criteria requires disability, which requires support, which means money. To get the money, you need to get the diagnosis, which means you must be disabled, since we don’t want to fund able bodied people. Thus medically Autism is a disability. While it does make sense from an Economic Medical Model to focus on what needs funding, this excludes from the identity of Autism from people who don’t need government funding help, but are neurologically Autistic.

Autism is a hereditary congenital neurological condition. Autism is an umbrella term for a number of different neurological differences that result in the person processing information differently to the biggest group of neurologically similar brains, the Neurotypicals. That is, Autism isn’t just a single type of brain difference, so a simple fMRI scan of a particular brain region won’t be the same for all Autistic People and significantly different to Neurotypical People.

Congenital means you are born with it. Sorry anti-vax people, vaccines have been definitively proven not to cause Autism. If anything, Autism causes vaccines as most people who go into that level of medical research are Autistic. Studies of neurology in utero (prior to birth) has a 81% or greater diagnostic correlation to a diagnosis of Autism 3 to 5 years later [Source “Functional neuroimaging of high-risk 6-month-old infants predicts a diagnosis of autism at 24 months of age“, “Early brain development in infants at high risk for autism spectrum disorder“].

Hereditary means that you probably got Autism passed to you from a parent, generally both. Neurodivergent folk don’t tend to stay in relationships with Neurotypicals for more than about 6 months before the relationship fails. If your parents were together for more than 6 months before you were conceived, then it is highly likely that both of your parents have similar Neuro types. Studies have shown that Autism is at least 80% heritable, and I have questions about the other 20% and masking (hiding your reactions).

Your specific neurological difference to Neurotypical People will result in some areas of difficulty compared to them, which may or may not be disabling. With some good education, many of the discomforts and difficulties can be overcome. These cognitive and behavioural modifications are personally expensive – they require effort, attention, and are therefore exhausting. Some are more expensive to maintain than others and there are various versions that may or may not work better or worse for you. Some of your neurological differences may make it easier for you to do certain things when compared to Neurotypical people, and hopefully you can find a way to be capitalised (paid) for this, rather than dismissed (which is common – charge for your abilities, don’t undervalue them).

Parents who have learned who they are, and in this case will consider specifically parents with a formal diagnosis, are more likely to raise children who gain the benefit of parents who understand their Autism and help them learn these various coping strategies and are good at taking advantage of any neurological benefits of their differences. Ironically, these children find it much harder to get an Autism diagnosis because they do not present as struggling sufficiently for the diagnosis. They have learned how not to struggle. They still have the inherited neurological differences that mean that their Neurodivergence is in the category of Autism, but can’t be diagnosed Autistic because they have learned how to not struggle in an obviously disabled way.

That was a lot of words to explain that you can be Autistic and not diagnosable as Autistic by the deficit based Medical Model. At least these children know they are Autistic even without the formal diagnosis, because their progressive parents have taught and informed them.

That leaves a large number of people who are Neurodivergent in the Autistic group, but manage to get through childhood without a valid assessment or recognition, who are now adults and have learned to survive without funding and support.

Without recognition, being Autistic can be very lonely. Autistic people are often misdiagnosed with Anxiety, Depression, Borderline Personality Disorder, Antisocial Personality Disorder, Schizophrenia and a host of other diagnoses, primarily because General Practitioner Doctors, Psychologists and Psychiatrists do not learn about Autism as part of their degree (some will do specific training to include it, most don’t). When a person comes to the professional because they are struggling, but don’t present in a classic Autistic way (or frequently they do), it is very easy to mistake their struggle as a condition that doesn’t match Level 1, 2 or 3 as described in the previous section, but instead matches your expectations of mental illness (especially Personality Disorder). After all, when you hold a hammer, most problems start looking like nails.

Most well to moderate functioning Autistic People who have learned about Autism from peers – Autism advocates who are Autistic, can recognise a fellow Autistic person within minutes of meeting, while it can take years for a medical professional to work that you are Autistic, or hours for a Autism specialist medical professional to recognise and assess it. It can cost thousands of dollars for a specialist medical professional to correctly diagnose and many people cannot afford that. If you are lucky enough to be suspected in childhood, it may take years to see a childhood Autism specialist (often a Paediatrician with some knowledge of Autism) to get diagnosed if you present classically, and then another year or so before you might get funding to help.

Diagnosis is a privilege that many Autistic People cannot get.

The restriction may be because the Autistic Person doesn’t meet the classic picture of selfish little boy, or the more modern Medical Model of disability, or because the costs can’t be met, or your parents don’t believe it is real, or etc. Either way, if you can get a diagnosis, great – but if you can’t, that doesn’t mean that you aren’t Autistic. (We talk about the diagnostic procedure and its privilege in our main Autism Page.)

Autistic Identity is about recognising that Autism is about neurology, not being disabled.

Does your brain work in an Autistic way? If so, even if you are not functionally disabled, even if you can’t afford a diagnosis, you are Autistic.

Autistic Identity is inclusive rather than exclusive.

Once you know that you are Autistic (or strongly suspect it), then you can learn about how Autistic people handle situations that you struggle with and you can learn better or different methods. You can get connected to other Autistic People who are similar to your end of the Spectrum, and make friends that get you without you having to train them, teach them, or you putting up with their non-comprehension.

We are NOT All a Bit Autistic

Autistic traits are human traits, but dialled up or down from the common human average. The difference between being able to understand a little about what an Autistic Person means and living that experience is profound.

As an analogy, I do not have a uterus etc. I’ve experienced cramps, and bleeding, and so I can relate to those aspects a bit, but I have no idea what a menstrual cycle is. Since the experience of menstruation can be described in human terms that we can all kind of relate to does not mean that we are all a bit menstrual.

The Spectrum in Autism Spectrum Disorder does not mean that all people are on this Spectrum, from a bit Autistic to Severely Autistic. The Spectrum in the USA model refers to how Autistic People’s Autistic Traits are on a Spectrum of experience. For example, some Autistic people have no problems with eye contact, while most have some to major problems with eye contact. The Spectrum recognises how this trait is not experienced by all Autistic people, and that those who do are not experiencing the same strength of that trait.

Autistic Socialising

The most important medical marker for Autism is struggles with social (requirement A in both DSM and ICD above). While this is a common trait for Autistic People, it is, like all other traits, on a Spectrum of “great / typical / mild / moderate / severe”. While struggles with social are a good early clue to consider Autism, it is more complex than “struggles with social” suggests.

When Autistic people are socialising or interfacing with Neurotypical people, it can typically vary from tiring to exhausting. There are two major aspects of this.

Learning How to Speak Neurotypical

The most important is how well has the Autistic person learned how to deal with the weird behaviours of Neurotypicals. Neurotypical people tend to lie, give ambiguous definitions and fail to give information directly or timely. Neurotypical people are often upset when they the person they are interacting with doesn’t bend the truth, doesn’t understand what they said or says something that is too direct. Learning how to navigate this well is hard, but once done, means that interacting with Neurotypical people is merely tiring and frustrating.

Neurotypical People Don’t Communicate Well

The next most important aspect is what type of Neurotypical people you are dealing with. While Neurotypical people are mostly very similar to each other, some do go out of their way to learn how to speak more directly, be less ambiguous with their sentences and recognise that some people won’t lie / bend the truth / distort the story and so on. This makes it significantly easier to interact with, and takes some of the load off the Autistic Person to make discussions better.

Co-Occurring Conditions

Another important aspect to look at is the common co-occurring (comorbid) conditions that Autistic people often have, such as Social Anxiety and Rejection Sensitivity, or a history of abuse as Neurodivergent folk are often the primary target of abusive people. When you have not learned what is reasonable, it is easy to fall into People Pleasing, Pathological Demand Avoidance, Oppositional Defiant Disorder and Relationship Violence. When you aren’t sure what is a fair way to be, it is hard to see when people are being unreasonable.

The Flaw in Criteria A, “Struggles Socially”

A major component of testing for Autism is checking for how well a person is socialising. It is infrequent that Autistic people learn the above socialising skills, or are able to manage their own mood and cognition well, either of which causes social friction. This friction is often then used as a quick way to show that the person is likely Autistic. This criteria does not take into account what happens when most of your friends are Autistic with similar neurology to yourself, or if you have learned to compensate for Neurotypicals by learning their language, or if you are in an environment where the Neurotypical People you interact with have learned to speak Autisticly. By focussing on “struggles” instead of “how your mind works”, the diagnosis saves time for many people, but excludes many people too.

Spectrum can Mean Opposite

The difference between two Autistic People can be greater than that between each of those autistic people and a Neurotypical Person, because their brain architecture is fundamentally different in different ways. Autistic People tend to cluster socially together in average similarities, and prefer to speak more natively when Neurodivergent People aren’t around. It can take a little time for a person who is late diagnosed to let down their masking (filtering) protocols to start speaking (sometimes learning) to speak natively.

As such, two Autistic People may be on “opposite ends of the spectrum” (on a few traits) and find it even harder to talk to each other than to talk to Neurotypical People.