Imagine that someone is colorblind, yet they have the job of identifying and detecting colors, and everyone around them thinks they are doing a great job getting all of the colors right. There’s no oversight or check by someone who sees in color. No one even thinks twice about it really. Imagine those people being trained by other colorblind people on how to detect colors. Wouldn’t that seem a bit backwards?
That is the prism through which we view autistic people as a society, and as many professionals do. They may only see “communication deficits,” but really they aren’t able to see into an autistic person’s brain, who may not think in the way a neurotypical person can follow. They can’t go into our brain and figure out what we are thinking and feeling. The idea that you can take a test, or someone (usually a neurotypical person) can assess your body language/tone of voice/very existence and then somehow know you are autistic,* is in some ways, rather ludicrous in the first place. But if that person has no firsthand knowledge of autism from an autistic person, then it is very much so.
In particular, the very “disorder” is defined as a social communication disorder. So, then why do non-autistic people think that you can diagnose someone from interviews/tests who literally has problems expressing their thoughts verbally in a neurotypical way (in a way that neurotypical people can understand)? You already have a barrier there, something that is inaccessible. Honestly I’m not sure I would’ve been able to speak so much during my interview for an autism diagnosis if my husband wasn’t there to elaborate on things. Further, many autistic people (myself included) have a hard time understanding and verbally expressing their emotions to others, and sometimes themselves (alexithymia). Therefore, we may not even know we are experiencing anxiety, or stress, or sensory pain. The fact that you have to be aware of your emotions to tell someone what you’re experiencing is a big problem, and likely part of the reason so many autistic people go undiagnosed through childhood and adulthood.
Diagnosis is largely based on neurotypical communication expectations, but many professionals are missing very important components – sensory hypersensitivities (or hyposensitivities) and alexithymia. Those are two giant barriers to actually getting diagnosed, as sensory overload makes it hard to think and verbally speak, while alexithymia makes it hard to recognize your emotions, especially in the moment (when a 2-second answer is expected). Although in general, diagnosing anything based on behavior is not great (if there are other methods, we should use them!), autistic people in particular are set up to get missed or invalidated by professionals. I could especially see this happening for children. There are a lot of autistic children (especially children raised as girls) who give the “correct” feedback that they think is expected of them, or don’t know how to describe their emotions.
I know that as a child, I thought I –
- made eye contact (I blurred my eyes or looked at people’s ears/noses/eyebrows)
- was good at conversation (to some extent I was since I watched people a lot, but couldn’t initiate or sustain a conversation with same-aged peers),
- didn’t have any difference in auditory processing from other people.
So how the hell would professionals have ever diagnosed me?
Any question would be answered like a neurotypical person.
- Do you have friends? “yes”
- I had people I sometimes talked to at school, so those are friends right?
- Do you get overwhelmed? “no”
- I didn’t know I was anxious or in pain
- Can you have conversations with other people? “yes”
- I’m having a conversation with you right now!
I even found and took an autism quiz in 7th grade, very anxiously, thinking no, there’s no way I could be autistic. It had questions such as “do you make eye contact?” (answered yes), “can you make conversation?” (answered yes) and a few other things. I don’t remember the results to be honest, I just remember thinking, “yea there’s no way I have that, I’m just a weird kid” after I took it. It may have even been on the “threshold” of needing to look into a diagnosis, but I’m not sure.
Professionals, Remember This:
- Autistic people’s sensory experience does not equal behavior.
- We can hide distress, pain, and anxiety.
- Autistic people’s emotional experience does not equal verbal expression or ability.
- We often feel things in the moment that we cannot describe.
- Autistic people’s theory of mind does not equal results of experiments based on vaguely worded questions and tests, while assuming neurotypical type responses are the empathetic ones (i.e. the “right” answers).
- Neurotypical people are just as bad, if not worse, at understanding what helps us.
- Autistic people’s experience of shutdowns/meltdowns does not equal “challenging behavior” or negative/spiteful intent to others.
- Often it is stress from sensory overload and/or anxiety or frustration
- Autistic people’s body language/tone of voice does not equal neurotypical implicit intent or implications or emotion (read from a neurotypical perspective).
- Facial expressions aren’t even emotions in neurotypical people, but social intent. We just don’t express feelings in the same way sometimes. I generally have a flat affect no matter my emotion.
*Note: This is not to say that there isn’t autistic body language or tone of voice to some extent. But there is as much variability between autistic people as there are between non-autistic people – so, a lot! My point is that how someone presents themselves to the external world is based on how someone grows up, what is expected of them, and what external pressures are put on them by society in general. Being an autistic cis white woman is likely very different from being an autistic trans black woman, for example, or any other different characteristics of a person. Your external pressures are different. And then there’s individual experiences of how you are treated and reacted to when growing up.
My point is that there is not one way to be autistic, just like there’s not one way to be neurotypical. Until professionals understand that, and until we have more autistic professionals in the field, an autism spectrum “disorder” diagnosis will simply be one box they’re trying to fit over everyone, no matter each person’s dimensions.
Self Diagnosis is Valid
Also, self diagnosis is valid. We shouldn’t have to try to access the inaccessible (through money/place/time/resources/implicit gender and race biases) to believe that our own experience of our existence is accurate and valid. My own diagnosis story was positive – but for many many other autistic women/non-binary people, it wasn’t. I was told I had done a “lot of research” and was immediately validated by the person who saw me, likely because I spent 6 months finding someone who has already worked with autistic adult women, after I read about autistic women’s experiences and heavily related to them. We are so scared of invalidation by professionals, unfortunately because it’s so common. If a professional invalidated you, know that the entire diagnostic system for autism is based on very little knowledge of autistic people. Self diagnosis is valid. Your experiences matter. We’ve been invalidated enough. It’s hard to do, but try to trust yourself. You matter.