Autism stereotypes and Not Autism Syndrome

People who have rare developmental disabilities are often misdiagnosed with autism.  This happens in part because a lot of disabilities look similar in early childhood. When kids with undetected rare genetic conditions start ‘missing milestones’, they are often assumed to be autistic.

When people are assumed to be autistic, autism stereotypes get applied to them. They’re often assumed to be uninterested in people and communication, and they’re often put into ABA programs prescribed for autistic people. They face the same kind of degrading and damaging misunderstanding that autistic people do.

When advocacy organizations address the issue of misdiagnosis, they tend to say some form of “It’s important to distinguish between autism and Not Autism Syndrome, because demeaning autism stereotypes only accurately describe autistic people.”

Here’s a Rett Syndrome example:

“The child with RTT almost always prefers people to objects, but the opposite is seen in autism. Unlike those with autism, the RTT child often enjoys affection.”

And a Williams Syndrome example:

“Unlike other disorders that can make it difficult to interact meaningfully with your child, children with Williams Syndrome are sociable, friendly and endearing. Most children with this condition have very outgoing and engaging personalities and tend to take an extreme interest in other people.”

Statements like these suggest that the problem with autism stereotypes is that they’re applied to the wrong people. The thing is, demeaning autism stereotypes aren’t true of anyone. We all have feelings and thoughts and the capacity to care about things and relate to other people. Accurate diagnosis matters, but not as a way of sorting out who is and isn’t fully human. We’re all fully human, and no one should be treated the way autistic people are treated. We shouldn’t pass around stereotypes, we should reject them.

If you’re feeling bad about your kid after an IEP meeting

Content note: This is directed at parents, and it’s about mitigating damage that can be done by the stigmatizing language in the IEP process. It expresses sympathy towards parents who are feeling things that can be harmful to disabled kids (as well as a call for parents handle those feelings constructively). This post may be triggering to people with disabilities who have been harmed by these kinds of attitudes. 

The IEP process can be really hard on kids, parents, and families. In order to get your kid the services they need, you’ve probably had to describe them using some awful language. It likely violated every one of your instincts about how parents ought to describe their kids. You may have had to do it anyway, in order to get your kid access to education.

It’s pretty normal to feel awful about either yourself or your child after describing them in such negative terms or allowing others to do so. It’s wrong, and it feels wrong, and you often can’t do anything about it — and it often comes along with pressure to believe that this is being caused by your child’s disability. If you’re finding that you feel that way, it’s important to do something about it. Kids are generally very aware of how adults in their lives feel about them. Feeling that way about your kid on an ongoing basis is really damaging to them and to your relationship with them. Don’t beat yourself up; do find ways to mitigate it.

It can help a lot to remind yourself that nothing about your child’s disability causes this kind of language. No child should ever be described this way, including yours. They’re not being described this way because of the things they can’t do — they’re being described this way because the system is ableist and often unwilling to respond to disability constructively. It’s not their fault, and it’s not your fault — it’s an awful fact about our culture’s attitudes towards disability.

You wouldn’t say that a baby is failing because they’re not talking — it’s just part of being a baby. If someone said that a typically-developing eight year old was failing because they can’t write 10 page papers, most people would be outraged. Your child’s development isn’t failure either, and they deserve appropriate education without stigma or panic. They are allowed to have a body and a brain, and they deserve to be respected as a human being. Language that treats them as a collection of deficits is cruel, and doesn’t reflect reality.

Your child’s differences aren’t a failure. Their development is what it is, and that’s ok. It’s ok to be different. It’s ok to have a disability. It’s ok to need appropriate education. Their need for appropriate education is not failure, it’s just that you sometimes have to cooperate with a system that wrongly describes it that way.

One way you can show yourself that it shouldn’t be this way is to write a better description of your kid after the fact. Rewrite what your child is learning, and what you’d like them to learn. Write about what the barriers are, and what kind of help they need. Write about their rights, and where you see that they might be violated. Write about them as the child who you know and love, not a collection of scary deficits. (It can also help to write down ten of your favorite things about your kid.) Their disability does not call for freaking out. It’s just part of who they are, and that’s ok.

Short version: IEPs describe kids using cruel stigmatizing language that doesn’t reflect reality. Having to cooperate with them anyway can do serious damage to parent-child relationships. Rewriting a new and better description of your child can help to mitigate this damage.

An example of both types of mental health stigma

Content note: This post contains both criticism of and respect for the mental health system. If you find either upsetting, it’s likely that this post will bother you.

I wrote recently about two distinct kinds of mental illness stigma. There’s dismissiveness, where people aggressively deny that someone’s mental illness is real. There’s dehumanization, where people believe that someone’s mental illness is real, and treat them as though their condition makes them less than fully human. Both are common, and people who have experienced one more than the other tend to have very different perceptions of the mental health system.

One example of difference in perception: Mental health advocates often say things like “Medication for mental illness is just like insulin for a diabetic”. People who have mostly faced dismissiveness often see this as validation; people who have mostly faced dehumanization often see it as a threat.

From the perspective of someone who has mostly experienced dismissiveness, it might sound like this:

  • I’m really glad that someone understands how serious my medical condition is
  • People have told me over and over that I don’t have a real problem
  • Or that medication is just a crutch I’m using to avoid dealing with things
  • Or that it’s whiny to want medication
  • Or they might say things like “You’re not sick. People with cancer are sick.”
  • My medication is really, really necessary
  • Or even: my medication saved my life, and I think I’d die if I stopped taking it.
  • I’ve had to fight my doctor, my family, or my insurance company to get access to the medication I need.
  • It messes up my life when people don’t take my need for medication seriously.
  • I’m glad someone gets it about how real my medical condition is, and how important it is for me to have access to medication.

For someone who has mostly faced dehumanization, a statement like that might sound more like this:

  • People have treated me like I’m not a person, and use analogies to physical conditions to justify it.
  • People have made me take medication I didn’t want to take, that did things to my brain and body that I didn’t like.
  • They’ve done this to me in order to change how I felt, thought, or behaved.
  • They’ve told me that what they were doing to me was just like giving insulin to a diabetic.
  • And that this meant I could not possibly have any valid reason to object to the treatment they wanted me to have.
  • But diabetes and mental illness aren’t actually all that similar.
  • Insulin-dependent diabetics who refuse treatment die. When I refused treatment, I didn’t die. It’s not the same. I’m not sick in that way.
  • The way I am is not the same as having a life-threatening physical condition with an obvious straightforward life-sustaining treatment.
  • It’s important that people understand the difference.
  • When they don’t understand the difference, they treat me as though I’m not a real person unless I am on the medication they want me to be on.
  • People say “unmedicated” like it means violent, dangerous, or incapable of understanding something. It doesn’t. It just means that someone isn’t taking medication. That doesn’t tell you anything in itself.
  • I need people to respect me as a person, and respect my right to make treatment decisions. When they don’t, things can get really bad really fast.

There are numerous other examples of things like this. Most things people say about mental health look very different to people who have primarily experienced dismissiveness than they do to people who have primarily experienced dehumanization. Neither perspective is right or wrong exactly; both are important and incomplete.

Access to psychiatric medication is important; respect for the humanity and human rights of people who have been diagnosed with mental health conditions is also important. Things aren’t great for anyone, and they could be a lot better for everyone.

Short version: Mental health discourse often looks very different depending on perspective. People who have mostly faced dismissiveness tend to see things one way; people who have mostly faced dehumanization tend to see things a different way. Scroll up for a concrete example.

Two kinds of mental health stigma

Content note: This post contains both criticism of and respect for the mental health system. If you find one or the other upsetting, this post will likely bother you.

There are two basic kinds of mental health stigma: dismissiveness, and dehumanization. Mental health conversations tend to have trouble acknowledging both at the same time — usually it’s at most one.

Dismissiveness stigma is when people deny the reality of mental illnesses. This plays out in a number of ways. One classic example of dismissiveness is “antidepressants are just a tool of capitalism to stop people from noticing that things are wrong”, or “Stop complaining. There are people with real problems”. There are many other examples.

Dehumanization stigma is when people deny the humanity of people with mental illnesses. A classic example of this is people who believe that the purpose of mental health treatment is to reveal the real person underneath — and that therefore, any objections they might make to the treatment “aren’t the real them talking”. There are many other examples of this as well.

Dismissiveness and dehumanization are both major problems. They’re both real, and they both do a lot of damage, even up to the point of costing people their lives.

People tend to perceive the mental health system very differently based on which kind of stigma looms largest for them. For a lot of people, it’s much easier to see one type than the other.

People who mostly experience dismissiveness often see the psych system this way:

  • No one took my problem seriously
  • I was scared to turn anywhere for help
  • Once I finally took the leap and went to therapy, things got so much better
  • Or, once I finally stared medication, things got so much better
  • (Or even: medication and therapy saved my life).
  • (Or even: I’m so glad people finally pushed me to get treatment; they were right.)
  • I wish people wouldn’t be so afraid. I wish everyone had access to this.
  • We need to fight stigma so that people can get the help they need.
  • (And to reform laws so that everyone has access).

People who mostly experience dehumanization often see it more like this:

  • When I entered the psych system, people treated me like I wasn’t a person
  • They forced me to take medication I didn’t want to take
  • The drugs didn’t work, and had harmful side effects
  • When I complained, they treated it as a symptom and raised the dose
  • They forced me to be in therapy I didn’t want to be in, and that made me worse
  • When I tried to advocate for myself, people treated it as a symptom, and no one took me seriously
  • Things only got better for me when I stopped therapy and/or medication and started a different approach
  • (Or even: stopping therapy and/or medication saved my life)
  • I wish people wouldn’t be so uncritical of a system that hurt me
  • I wish “unmedicated” wasn’t used as a slur implying that people who make the choices I make are all terrible people
  • We need to warn people, and reform the laws and systems that allow people to be treated this way

Some people’s experiences in the mental health system are positive in ways that nothing else is; some people’s experiences are horrifying. (And for a lot of people, things are more mixed). Neither type of experience is universally representative; both are real and common. Both matter, and need to be part of the conversation.

When most of someone’s experiences are with dehumanization, it can be hard to understand that dismissiveness is also a problem. Or why anyone would regard mental health care as positive, or lack of access to it as a problem. They may also find the terminology of “mental illness” repugnant, and have a strong preference for “crazy”. But it really is the case that for some people, mental healthcare including therapy and medication is a really good thing. And that for some people, the biggest problem with the system is difficulty accessing it (either because others discourage it, or because it’s too expensive.)

When most of someone’s experiences are with dismissiveness, it can be hard to understand that the dehumanization experiences are also real. (Particularly for people who were really afraid of mental health care and then had a transformative good experience with it.) It can be hard to understand why someone would prefer an apparently pejorative term like “crazy” over an apparently-netural term like “mental illness”. It can seem like people must be exaggerating, or that these things only happened in the past, or something like that. But dehumanization is still a problem now, and fighting treatment stigma will not address that problem.

Both dehumanization and dismissiveness are important barriers to people being treated as they ought to be. Because of both types of stigma, people lack access to help they vitally need. For some people, that help is treatment. For others, it’s access to resources like housing, respite, and assistance with food. For a lot of people, it’s both. People’s very real mental health struggles should not be dismissed; neither should the humanity and human rights of people with mental illnesses be denied.

Short version: There are two types of mental health stigma: dismissiveness, and dehumanization. Dismissiveness is when people deny the reality of your condition; dehumanization is when people think that your condition makes you less than human. Dismissiveness is often made better by the mental health system; dehumanization is often made worse. People whose experience is primarily in one category often don’t understand that the other category exists. Both matter, and both need to be part of the conversation.

Drugs, crutches, and other tools

Psychiatric medication is highly stigmatized, and so is physical disability. One way that this comes out is that people say pejoratively, “medication is a crutch.”

Why is “crutch” an insult? What do people think is so terrible about using crutches?

I think that it’s a kind of ableism where people don’t understand that disability actually exists. They believe that anyone can do anything, if they put their mind to it and work hard. When people with disabilities can’t do something others can, they assume that we are just being lazy. They assume that about moving, they assume that about moving, and they assume that about thinking.

They believe that if they push us to try harder, then we will learn to stop being disabled. They think that if we stay disabled; it’s because someone’s giving us permission to be lazy. They’re constantly on guard against the possibility of a disabled person getting away with something.

They are aggressively hostile towards any visible adaptive strategy. When they see crutches or medications or whatever, they are terrified that we are getting permission to be lazy.

Sometimes, they think it’s ok for us to use these things, but only if we fall into a very narrow category of people think think have real disabilities. For instance, they might think wheelchairs are ok for paralyzed people, but have no respect for wheelchair users who can walk. Or they might think it’s ok to use medication if you’re trying to stop, but have contempt for people who need medication long-term and have no plans to stop taking it. Or whatever other combination of things. People have a lot of really weird ideas about disability, and just about any prejudice you can imagine exists.

Crutches are a tool. There are other mobility tools. Medications are several different tools. There are other mental health tools. They all have advantages and disadvantages, and everyone has to figure out what works best for them. Every strategy is stigmatized, because ableists expect us to think our way out of being disabled. But crutches aren’t actually bad things, whether they’re literal or figurative. We all find the ones we need.

Short version: People with disabilities need adaptive strategies to work around disability-related limitations. Ableists think that we’re just being lazy when we use adaptations such as mobility aids or psychiatric medication. They often pejoratively say “you’re just using that as a crutch,” as though using adaptive equipment is the worst thing you could possibly do. But actually, there’s nothing wrong with crutches. We all find the ones we need, and that’s a good thing.

Autism is a disability

A reader asked:

You know, I follow this blog because I think it’s cool and although I don’t really read your advice posts, I can see they’re very respectful and well thought out. That aside, I want to ask: how do you feel about labeling autism as a disability?

realsocialskills said:

I feel very strongly that it is important to refer to autism as a disability. It’s not just a difference; it’s a particular kind of difference, and that kind of difference is called disability.

There are all kinds of things that most people take for granted that autistic people can’t do, or struggle with, or can only do intermittently. Autistic people face ableist discrimination in response to not being able to do those things, or being perceived as not being able to do those things.

We have all of that in common with people with any other kind of disability. Acknowledging that allows us to learn from and collaborate with one another. Denying that we’re disabled just isolates us.

I think that every single thing I’ve written about autism has been reblogged by someone with another kind of disability saying “I can relate to this too”. As a result, my writing has become increasingly cross-disability. We have a lot in common.

If we try to separate ourselves from other disabled people, we lose a lot. Overlapping disability communities have a lot in common, and a lot of built up tools for dealing with disability, dealing with discrimination, and supporting one another. If we admit that we’re disabled, we can be part of that. If we don’t, everything gets a lot harder.

Short version: I think that autism is a disability and that admitting that makes life a lot better for autistic people.

Being with family can do weird things to you

Something to be aware of if you’re with family for the holidays/break/visting/etc:

If you’ve been working on self-acceptance lately and making progress, some aspects of that are likely to be harder when you’re around family. When you visit family, you might feel bad about things you’ve learned to feel good about in other environments. That might be very frightening. It helps somewhat to know that it’s normal, and that most people struggling with self-acceptance go through this.

It will be easier when you leave again. And, in time, as your self-acceptance solidifies, you will likely learn to hold on to it more consistently when you’re with family. This takes time and practice. It’s not your fault that it’s hard. It’s not a failure and it doesn’t mean you’re doing self-acceptance wrong. It just means that it’s hard.

An example: If you’re fat and you’ve been learning body positivity and feeling good about yourself and your body, that’s likely to be harder to maintain while you’re visiting family. Most people aren’t in tune with that particular kind of body positivity. And some families are actively awful about it. You might feel worse during your visit, and feeling worse may linger after your visit. But it’s a temporary setback; it’s not permanent and it’s not your fault. It’s just that these things are hard, and close relationships complicate things when you’re trying to learn to live by values people you’re close to don’t share.

It can help to actively stay connected to people who share your values while you’re visiting family. (Eg: take time to read body-postive blogs; talk to your friends; write emails.) It can also help to journal.

And, in the words of Laura Hershey, it helps to remember that you get proud by practicing. Feeling good about stigmatized attributes you have takes time and practice. Feeling good about those things even when you’re around family members who feel bad about them is an advanced kind of pride. It takes a lot of practice to level up and feel ok even in that context. It’s hard, and that’s not your fault. You’re ok, even if you feel bad right now.

Setting the stage for disclosure of awkward or stigmatized things