For a long time, autistic children were taught to hide who they were – to mask and conceal themselves. Autism (and the language around it) was filled with shame and euphemisms. Much of what society knew about us was ableist research carried out by people who did not consult us.
Now, autistic people are no longer content to let the misinformation and stereotypes about us be the only available information. Autistic advocates are increasing in number in our community. Some people call this the neurodiversity movement – an increase in the acceptance and awareness of neuroatypical people. More generally, we are coming together as a community with our related traits and expanding the available knowledge. This has led some to their personal epiphany.
Many people who were diagnosed later in life learnt they were autistic from other autistic adults sharing their experiences. It gave them hope that an answer was possible. Information about autism from people who are actually autistic is serving us in ways that neurotypical conducted experiments never could.
Autistic advocates are making research accessible for learning and the growth of the community. We grew up autistic and therefore know the experiences of an autistic child better than anyone else. We are fighting for better accommodations for autistic children and adults. In some ways, it has been an uphill battle with the neurotypicals who wish we would stay quiet.
Why? We no longer fit their narrow-minded perspective of autism. We stand up for ourselves and say that ABA is abuse – encouraging unmasking where it is safe to do so. We are the generation that is changing the way autism is seen. It is becoming harder to be the victim of an autistic child or the “warrior autism parent”. Society is looking to us to shift the narrative of what autism is and it threatens the status quo and the identity of people who benefit from harming us. They do not want to see this change.
So, now that we can no longer be controlled and kept in secret, they try to silence us, to discredit us. Functioning labels were used in this way – to divide autistic people into “low-functioning” who are unable to speak for themselves (untrue) and “high-functioning” who don’t understand what it was like for the others (also untrue). They pushed the idea that some of us don’t deserve to be accommodated because we aren’t “properly autistic” for so long. It no longer works. Autistic people are still speaking up – some of us with AAC.
Now on to the main concern of this post:
One of the most recent techniques to silence these autistic voices is saying “they must be self-diagnosed and self-diagnosed people don’t count as autistic”. This view is painted in in false concern that people are ‘faking autism’ because it makes them ‘interesting’ and takes neat advantage of the fact that diagnosis is still inaccessible for many – despite the increased awareness. It is weaponized to discredit us, to deny us rights and to ignore the needs of the autistic adults that are speaking up at such an important time. The debate highlights one of the key problems that autistic people face – both formally-diagnosed and self-diagnosed – disbelief rooted in stereotypes.
The prevalence of this is the precise reason that self-diagnosis is not only valid but vital to the autistic community, especially during this period of heightening visibility.
This has been said hundreds of times but it is necessary to bring it up again: Self-diagnosis is not sudden. It takes months or years of research and introspection. People don’t just wake up one day and decide that they are autistic. It is almost never that simple. Self-diagnosed people have a harder journey in some ways – especially those on the way to a formal diagnosis.
Late diagnosed autists mostly start here. These are the people whom the system failed, the evidence that things need to change. They are the evidence that classism, patriarchy and racism are rampant in psychiatry.
Many people say “trust the experts” – but why should we trust the same experts who missed thousands of people and who are proven to be biased by race and gender?
I live in a country where it is particularly difficult to get a diagnosis as an AFAB person. A quote from a friend of mine who is self-diagnosed highlights the problem: “It took a long time for me to be okay with self-identifying. I sought formal diagnosis but they were not interested in diagnosing me. They said that I was “high-functioning” because I functioned well enough at the time that they saw me and because I had a relationship and friends and a job. Therefore I was not struggling to them. This wasn’t true and was really frustrating for me because I was struggling in all these aspects”
An autism diagnosis is expensive, time-consuming and heavily biased by the people conducting the experiment. It is not always accessible to autistic people. Sometimes, the only way to receive your diagnosis as an adult is to hit burnout. The idea that the only voices that matter are the ones that are privileged enough to get a formal diagnosis is damaging us – it is preventing the change that we so desperately need to see.
Autistic people are incredibly diverse and span every culture and demographic and yet most diagnosed autists are cisgender Caucasian males. The criteria for diagnosis is expanding to be more inclusive in small increments and this is largely due to the part of the community that many wish to ignore – the self diagnosed individuals. In any group that undergoes a transition state during growth – self-identifying will play a key role. Until diagnosis is more accessible, some people will be self-diagnosed. They are still autistic.
These self-diagnosed people are adding valuable insight to the community and showing others that, even if they weren’t diagnosed as a child, they are seen and heard and their voice matters. They are bringing unique experiences forward. Self-diagnosed people encourage other autistics who do not fit the stereotypes as neatly to seek answers for themselves and fight for their diagnosis.
New autistics see these people and realise that the community is not shut because they weren’t diagnosed as a child – it removes the stigma and encourages them to learn about autism. I know countless stories of people who have realised they are autistic and eventually gotten their formal diagnosis because of these activists.
I would like you to think about this for a moment. Imagine an autistic person going through their life into adulthood, feeling like there is something wrong with them, feeling hopeless – like there is no answer for them. Imagine them, finally, seeing someone else (a person who also did not receive a diagnosis as a child) as an autistic advocate. Think about how powerful it must be to see that they are not alone and that they will be accepted into a community that is linked by a story so similar to theirs. Think about how it must feel if that activist gets a diagnosis – how validating that is for the people they influence. The flow of self-diagnosis to formal diagnosis helps others follow the same pattern.
Self-diagnosed people sharing their stories allows progression. Without them, it would have taken so much longer for us to get as far as we have.
Autism in psychology is vastly understudied and has only now started shifting into view. The idea that autism is already precisely defined is ludicrous at this point. So if we know that autism is something that is vaguely agreed upon by different panels of neurotypicals – we can easily see why diagnosis is not always feasible. Why would we doubt the people who know their experiences best and say that self diagnosis cannot be valid?
If you are autistic yourself, you cannot categorically ignore the positive impact that self-diagnosed people have brought about for our support. Originally, it was only (or almost only) young Caucasian males that were diagnosed but as the voices got louder – people started to see that you could be autistic regardless of your demographic. They started to see that autistic people are a very diverse group. Diagnosis is still heavily biased but the more people fought for their diagnosis – the more examples of autism were available. An autistic person growing up now is no longer forced to feel as alone in the world.
Another thing I would like to address is the concept that people would “fake” autism. Self-diagnosed people do not get access to resources and special privileges. The only benefit they would gain is the communion of the autistic community – which is useless to an allistic person. In my experience, outspoken self-diagnosed people get more hate than anything else.
Even if one or two of those people are wrong about being autistic -the overall benefit they bring of more people learning about autism is worth the supposed “cost”. Self-diagnosed people are a benefit to the autistic community – not a threat.
As for the formally diagnosed autistic people, it is vital that those of us who are willing to remain visible do so. Our stories are helping other autists learn about themselves. The more information we put out there – the more people will learn about autism. Change is happening as we speak and we can no longer be silenced by simple ‘accusations’ of self-diagnosis.
Dear self-diagnosed people – you are an important part of our community and we see you and appreciate you – regardless of whether you are able to seek a formal diagnosis or not.
A formally diagnosed autistic person (I am including this so that people cannot say I am biased as a self-diagnosed person when I am not)