This year, I’ve been around many truly autistic, disabled, and mentally unwell people in real life. I have seen and interacted with these people – including autists with a wide range of support needs – in reality in a range of different settings. These individuals include those with co-occurring intellectual disability, vocal stims and/or Tourettes, co-occurring other disabilities, medium or high support needs, and loud and obvious self-stimulation behaviours.
I’ve seen in real life the clearly inherently disabled autistic individuals that people sometimes say you don’t look like if you have the privilege of being a higher functioning autist with no or very low support needs. I’ve spoken with, worked alongside, and observed these individuals in my real life.
So, to follow up on previous writing, published last year on International Day for People with Disability (December 3rd), I’d like to address certain misconceptions that I noticed to be quite common within the online autistic community (especially on popular social media platforms) whilst I was a part of it last year. The following beliefs are often spread online amongst those who haven’t necessarily seen many disabled autistic people in real life. As I said in this piece, it’s okay if you disagree with some or all of my writing.
1. Autism is just a difference and not a disorder
The neurodiversity movement (a sociopolitical ideology, literally coined by a sociologist) promotes the idea that autism is just a “neurotype”, or a natural, neutral variation in human neurological functioning. Similarly, it claims that other debilitating medical conditions – such as OCD, bipolar, or schizophrenia – that require intervention, therapy, help, and oftentimes medication, are merely neurotypes that do not require intervention, therapy, help, or medication.
The ND ideology gaslights autistic people – who are sometimes socially naïve and thus vulnerable – into thinking that autism is a mere difference that is only disabling because of society. Whilst this may be somewhat true for autists with no or very low support needs, it is certainly not true for all autistic people.
When the medical professionals who wrote the DSM – the DSM and the ICD are used globally to diagnose ASD – invented the level system, they knew very well that some autistic/disabled people require far more support than others. It’s called a spectrum disorder for a reason. Whilst the ICD system does not have levels, the professionals who wrote the ICD knew that some autistic people require far greater support. Someone with higher support needs (aka level 3 ASD in DSM lingo) requires far more support than someone at level 1 or level 0 (aka subclinical autism).
Without support, many autistic people would sink to the bottom of society, which is sadly what does happen in reality for many autistic individuals who did not have access to the required help for their permanent, lifelong disability.
2. Self-identification is as valid as formal diagnosis
One reason many truly disabled autistic people are frustrated at the neurodiversity movement is because it claims that casual self-identification as autistic is as valid as being formally assessed and diagnosed by an autism specialist.
Social media platforms are a breeding ground for various ideologies, performative activism, and identity politics that are detached from reality. Many of the loudest voices have never truly spent time with actually visibly, obviously disabled autistic people in real life. Their privileged lives are detached from the lived experience of moderate, severe, and profound disability.
Nowadays, at least in the Western world, many people are casually identifying as autistic based on subclinical quirks, preferences, personality tendencies, or behaviours which do not necessarily meet the DSM or ICD criteria for autism spectrum disorder. As many individuals use social media now, their content – with millions of views – can easily skew public discourse and beliefs surrounding autism and other disabilities. This makes it even harder for truly disabled autistic people to be taken seriously and to access the support they need for their serious, lifelong, neurodevelopmental, medical disability.
A casual remark from your therapist, or a 15-minute conversation with your general practitioner (GP) or primary health physician, is not the same as undergoing a comprehensive, hours-long evaluation by an autism specialist.
Yes, many of us have been overlooked by mental health professionals. But self-identification is not always valid as autism can resemble many other health conditions, for instance, obsessive compulsive disorder, personality disorders, anxiety and other mood disorders, ADHD, eating disorders, etc.
The ND ideology gaslights people into believing a formal diagnosis is only useful for validation when in reality many of us rely on a professional evaluation (a medical diagnosis of a serious medical disability) to access the support, help, and resources we need to have a decent quality of life.
3. The diagnostic criteria are ableist
Another lie the neurodiversity movement promotes is that the ASD diagnostic criteria are implicitly ableist, sexist, racist, etc. I would say that it’s not the criteria themselves that are these things but rather health practitioners who can be these things
What I find truly ablest is not the DSM or ICD diagnostic criteria but rather the ND movement’s lies that autism is simply a neurotype and not intrinsically disabling in itself. These beliefs can prevent autistic people from accessing the help they truly need for their serious disability in reality.
I understand that many autistic people do not like terms such as “deficits”, “abnormalities”, and so on. But personally, I’ve put the offence aside because I recognise that accessing the practical, real-life support I need is more important than the feelings of those with subclinical autism who can function extremely well without a formal diagnosis of a serious, neurodevelopmental disability.
4. Non-autistic caregivers are not a part of the autistic community
According to the DSM, diagnosable autistic people require support at a low, medium, or high level. Those of us with moderate or severe autism require support to complete our activities of daily living (ADLs). This support often comes from non-autistic, non-disabled people. We want them to be our friends and allies – not our enemies! They often have far greater capability to advocate for, protect, and support us.
Unfortunately, the ND movement can – but certainly does not always – encourage an “us versus them” mentality, which draws a strange line between “neurotypical” versus “neurodivergent” (whatever that means) individuals. This can lead to hostility toward neurotypical people. I would argue that this is deeply harmful, as the required support for people with ASD often comes from neurotypical people.
Non-autistic caregivers play an enormously important role – emotionally, physically, financially, mentally – in the wider autistic community. Simply because someone is not autistic themselves does not mean they do not have their own educated, informed understanding of autism. We should appreciate the enormous sacrifices non-autistic people have made to our understanding of the complete reality of ASD.
5. Certain language is forbidden
In order to maintain their ideological standing that autism is merely a neutral neurotype, zealot-like proponents of the neurodiversity movement engage in sophisticated mental gymnastics. You know you are part of a cult when language is heavily policed. Such is the case in the neurodiversity movement. As mentioned in this writing, the specific words you can and cannot use regarding autism, including your own experience of autism, are heavily policed. You are made to feel immoral if you breach these rules.
As one simple example, you can’t refer to subclinical, mild, moderate, severe, or profound autism, although these are useful descriptors often used by autistic people themselves and/or their caregivers.
If a carer uses terms such as “high support needs” or “level 3” autism, the vast majority of people won’t really understand what they mean. So, I’ve noticed that many caregivers use the term “severe autism,” so people in the general public (not involved in social media advocacy) can more quickly understand what they mean: This is a serious disability that can’t be reconciled with the neurodiversity movement’s ideology.
When you see these self-harming, visibly disabled individuals with serious challenging behaviours in reality, it’s difficult to reconcile the ND ideology’s stance with their lived reality and that of their often-lifelong caregivers.
Final thoughts
Whilst started with good intentions, the ND ideology, I would argue, has reached a point where it is actively harming truly disabled autistic people who require support. It does so through denial of inherent disability, allowing subclinical individuals who might not even be truly autistic to “identify” as autistic based on casual quirks, undermining both medical reality and lived experience of true disability, shunning non-autistic expertise and lived experience, and language-policing and tone-policing autistic individuals.
As a truly disabled autistic person, I find the ND ideology, in its current form, to be dangerous and harmful to not only myself but to thousands of other autistic people who truly meet the ASD diagnostic criteria. I am saying this not just as a disabled, autistic individual, but as one who has spent significant time with others with the same diagnosis in reality.
Monique Moate is a late-diagnosed autistic woman whose interest in psychology and autism spectrum disorder (ASD) stems from a lived-experience viewpoint.