When I identify myself as an autistic woman who is whole and happy, I get a lot of people telling me that I can’t possibly be autistic. I don’t fit their stereotyped idea of what that means. I get it everywhere I come out with my diagnosis. I get if from professionals who are paid to know better, and I get it from friends and co-workers. Even new acquaintances love to judge if someone’s autism diagnosis is legitimate.
I don’t know why people feel qualified to decide if this particular aspect of our personality and cognition should apply to us or not. Imagine if people felt the right to decide if you are gay or not. Or imagine if people looked at someone using hearing aids and said that hearing loss is over-diagnosed.
It is true that autism is stigmatized. It’s also true that a lot of autistic people experience institutional abuse. I experienced this myself. I was placed in special education in the 3rd grade and endured much abuse while I was receiving their help. There is even a trend towards medicating autistic people with antipsychotics, the result of which is much explored in other places on the internet.
But autism isn’t a mental illness. Autism is a difference in the way that we develop. Studies today show that we can tell which babies will eventually fit the criteria for autism at the early age of 18 months. Some early studies even show this is true at 2 months. Put shortly, autism simply means that a person is not born with the typical human drive to absorb social information. We don’t tend to focus in on people’s eyes instinctively. We don’t favor putting our attention towards human voices more strongly than non-human sounds, as typical children do. This is fantastic for an autistic adult looking to understand themselves, but does little for the diagnostician who is deciding how to treat the individual in front of them.
Autism is an umbrella diagnosis at this point. There is a huge variation in presentations and symptoms that all fit into this one category. The broadness of the diagnosis doesn’t tend to be useful to clinicians. In fact, as a special education teacher, I can tell you it’s rather problematic when I’m presented with a new student and only told that they are autistic, without more details. But the broadness of the diagnosis is very useful to the individuals. It’s useful to the people who live with it.
There’s a lot of criticism flung at both the Neurodiversity movement and the Mad Pride movement that we are bad for people who are called low functioning. I call bullshit on that. I think the real threat is that we’re talking about the so-called low functioning people like they are peers. We’re talking about them and us as if there is no “them and us,” just us. In short, we’re interacting with people as if they are just that—people.
The broadness of the autism diagnosis helps me see the humanity in people who need more supports than I need. It helps me understand what we have in common. That broadness allows me to interact with autistic people all over the world, everyone from CEOs to people who require help with clothing themselves (and CEOs who need help clothing themselves). It gives us a common sense of community. When I identify with people who have full time caregivers, I can use some of the ways that their caregivers give help to help myself.
Who does it threaten when we actively embrace people who have the same set of neurodivergent traits as our own, but in a much less subtle way? Let me put that another way: If we had a society where everyone embraced all of neurodiversity, meaning that every typically developing and non-typically developing person is held as equally worthy of respect, what would that society look like? How would you even be able to sell antidepressants to a population that had never been told that their human value is dependent on how well they conform to a social norm?
These people, who are sometimes called “low functioning,” have serious skills in the area of living with autism. Some of the ideas I’ve lifted off of my higher-needs peers include: Noise-cancelling headphones to keep noises from getting me all upset, weighted blankets and other weighted items for when I do get upset, and visual schedules of common daily activities that help me feel like they are entirely doable and not overwhelming.
An autism diagnosis can open up a whole new category of ways to support an individual who is suffering emotionally. Since autism is not a mental illness, we don’t have the same therapies for it. Types of therapy that can be used to help an autistic person include occupational therapy and speech therapy. There are also special education supports, some of which work just fine for adults struggling with daily tasks. Academic accommodations can make a huge difference to a struggling kid.
There are dozens of ways that we can help a child or an adult who has any sort of cognitive diagnosis. When applied appropriately and in line with the desires of the individual receiving the therapy, they can reduce stress and upset, help the individual develop a strong sense of self, and generally make life better. When we withhold therapies and supports, we see higher rates of medications and psychiatric hospitalizations.
Accepting myself as a peer with people who have more visible struggles than I do gives me more than just practical solutions. Knowing people helps me know myself. When I’m in a large group and it’s hard for me to follow the conversation, I can recognize that cognitively, I have a harder time following because I don’t filter sounds as well, and I switch focus with less ease than most of the other people in that conversation. I’m not bad, sad, or sickly. I’m just autistic. It’s normal for us.
When I slip and do something that causes me embarrassment, I sometimes beat up on myself for not being good enough. With an understanding of my autism, I can remember that I would never say the things I’m saying to myself to my autistic students. I can break tasks down for me, the same way I would for them. I can encourage myself the same way I encourage them. I can forgive myself the greater time needed in processing conversations. I can forgive myself for being way more tired than my neurotypical friends at the end of a busy event.
Despite all these psychological benefits, psychiatrists have this way of attempting to erase our autism diagnoses. It’s happened to the vast majority of autistic people I know. You’re sitting in a psychiatrists office, looking for help. They take a history, as doctors often do, and ask for your medical history. You tell them you’re diagnosed autistic. The doctor frowns. He tells you there’s no way that you can be autistic. You sigh. It’s going to be one of those appointments. But this time, you are ready with the 10 page neuro-psych evaluation you have from the PhD that diagnosed you.
Mind you, with ANY other disorder, the doctor would simply nod and record. No one asks to see the tests that tell you that you have diabetes. The psychiatrists looks at your ten page report for a bare second, and again tells you that there’s no way you are autistic. You’re much too articulate, and your hair is neat. He then proceeds to note that you have delusions and low self-esteem. He decides you have Borderline Personality Disorder, with depressive features.
He suggests group therapy… which… nothing could be harder for an autistic person who doesn’t hear well in groups. And of course, there’s the antidepressant medications. When you object that you don’t feel depressed, just too sensitive to the world, he adds a mood stabilizer on top of it.
Whether doctors find it clinically useful to diagnose me with autism is not my top priority. My top priority is making advocating for myself and for people who don’t have the skills to advocate for themselves. We don’t exist solely to receive therapies and be a consumer for the medical service industry. I exist for my own purposes. So please, if someone tells you that they identify as an autistic person, be respectful. Don’t tell them that autism is over-diagnosed. Understand that if they are using this label for themselves, it’s likely because it’s serving them somehow. Instead, ask them what autism means for them.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
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