This comment exemplifies how widespread misconceptions about autism are, even among those with a diagnosis. There is a LOT to unpack in this comment. Too much for a tweet. So I have written a (fairly) brief blog post addressing these issues.
The point of this post is not to call out anyone for not knowing how autism presents, or to suggest that my own experiences of autism are reflective of the wider autistic population. It is to raise awareness that what many people take for granted as facts about autism are often incorrect, partial, or outdated. It is also to remind people that diagnostic criteria (in all aspects of health) are:
based on descriptive norms that are biased towards the dominant culture they are created in
inevitably outdated, especially in fields as fluid as autism research - updates are not made frequently enough to keep pace with new knowledge and understandings
only ever a starting point - not a definitive checklist; people with lived experience should always be seen as competent, reliable, and valid sources of knowledge and understanding
The DSM should not be seen as providing a description of autism.
The DSM is intended to provide broad descriptors of observable traits that, in combination, may indicate autism. It is not a definitive checklist - it provides illustrative examples, not an exhaustive list of possible presentations.
It should also be remembered that the DSM is not the only guide available for diagnosing autism, the ICD-11 is used in much of the world and there are some differences in the criteria
The only thing autism researchers really agree on is that autism is heterogeneous and so individual experiences vary dramatically
Much of what people “know” about autism is derived from research based on the observation of very narrowly sampled autistic populations - generally young, white, middle-class, males
Girls/women are particularly poorly represented, leading to missed/delayed diagnosis. This has a compound impact on both research and diagnosis; Girls/women have traditionally been excluded from autism research due to lack of diagnosis. This reinforces standard views of what autism “looks like” because findings are based on observations of autistic people who have been deemed to meet the criteria - which in turn maintains low diagnosis rates among girls/women.
The same applies to autistic people from other marginalised groups.
The issues with the DSM criteria and the diagnostic process are widely acknowledged.
The DSM-5 has very recently been reviewed - DSM-5-TR . The diagnostic criteria for autism remains the same, however the supporting literature has been revised to include some acknowledgement of these issues.
Struggling to express/understand emotions is NOT characteristic of autism.
This is a common misconception based on the issues mentioned above regarding representation in autism research.
Some autistic people may struggle to recognise their own/others emotions and/or express their emotions in expected (typical) ways.
Difficulty expressing/recognising emotions is not a characteristic of autism. It is symptom of alexithymia. This is a distinct condition that may occur alongside autism. Estimates suggest approx. 50% of autistic people have alexithymia (compared to approx. 5% of non-autistic populations).
There are no “types” of autism (unless you received a diagnosis prior to DSM-V).
The “functioning” levels in the DSM-V are guidelines for support levels, not variations of autism.
There is debate amongst autism researchers about whether there is a need to reintroduce sub-types of autism to the DSM.
However, the use of functioning levels or sub-types is not widely supported by the autistic community.
I generally take issue with personal diagnosis questions. However, in the interests of dispelling some more myths:
My children are diagnosed as levels 2 and 3. They also both have ADHD. I myself have an ADHD diagnosis and I am in the process of receiving an autism diagnosis. I have been told it will likely be level 2. Approx. 40% of autistic people also have ADHD.
One of my children is gifted. The other falls into the high-average range. There is a huge diversity of IQ within autism.
Despite delayed/limited speech being almost synonymous with autism in child development checklists, neither of my children demonstrated language delays. One is hyperlexic and was talking at 9 months. The other met all the “norms” of typical language development.
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