Is Autism a Disease?

diseaseFULL

Pencil lines are from a drawing class in college.

This post is an edited version of an email I sent to an autism mom I know who also works in the AS community.

After I hit ‘send,’ I realized that this is a topic I wanted to address publicly, but had always struggled to write about. I often find it easier to write when I’m writing to someone, instead of writing for an abstract, imagined audience in my head.

(This is part of why I’m so slow in updating!)

The context of this particular conversation was initially in response to this YouTube video, the struggles both practical and emotional of dealing with aggressive meltdowns, and the question of whether autism can really be seen as a “difference” instead of a “disease” when striving for acceptance feels like hindering progress.


In this new age of autism pride, we’re told not to think of autism as a disease. But that’s not always so easy for a family struggling to care for an autistic child who needs constant support.

Simply stating that autism is a difference isn’t enough.

It’s easy for autistics to say, because we can see it from the inside, but it’s not practical advice that a parent can follow just like that.

What other mindset could we have, other than the disease mindset?

I think a central problem here comes from something I’ve heard described by several parents with autistic children, which is the rigid, “spectrummy” mindsets of many autism families. Human beings in general tend to be prone to black-and-white thinking. It can be very difficult to see something—especially something like autism—in shades of gray.

While I’m 100% in support of the movement lead by autistics to reframe autism as a difference instead of a disease or a disorder, I do find the (understandably) black-and-white nature of this message difficult.

Pride and acceptance is essential to ensuring the happiness and success of autistic people, but we in the autism community cannot deny the disabling aspects of an autistic existence.

While autism is more of a difference than a disease, an autistic life often comes with some level of disability—although there are many enabling aspects of autism, and autistics have skills and abilities that allistics do not.

While I enjoy and follow autistic communities espousing mantras like “I don’t suffer from autism, I enjoy every minute of it!” even someone like me is disabled in many ways, and there are days and situations where I do suffer because I am autistic.

The way I see it, autism is not a disease.

Autism is a pervasive, full-body difference that involves varying levels of disability, depending on both the situation in which an individual is placed, and the expectations that are set.

I believe that autism is not inherently disabling, because with the right tools, environments, and expectations, any autistic can emerge from disability.

Disability implies an inability to function the way one wants to, to achieve personal goals. I know of many severely challenged, non-speaking autistics who do not consider themselves disabled, because they live happy lives and are able to achieve the goals they set for themselves.

But living with autism is to live in an intense, overwhelming world that does not organize itself easily, and that is a difficult situation to be in, especially for a child.

This is an excerpt from an essay written by a little boy named Philip, who communicates very poetically with a letterboard using RPM:

I tame my pitiful body to more withstand the environment. I assert my will on each sense. It takes a lot of energy and concentration. A lot of times I can’t do it still but I am getting a lot better. […] I try hard to calm my sanity each day. Anxiety from the world’s expectations of being normal each day awaken a fight or flight reaction. Sometimes I reach for clothes to pull. I don’t mean to hurt anyone but I sometimes act out of fear or frustration. Heading out of uncomfortable situations is another sometimes annoying thing I do. I really annoy people with my tendency to escape.

The mostly or completely nonspeaking adults I know who cannot live independently but who do not identify as disabled feel this way because they are able to feel at home in their bodies and happy with themselves. But that surely comes after a childhood of learning and struggle.

Even autism with severe challenges can be a difference instead of a disease, but this does not imply that it is necessarily easy to live with—as if all we have to do is just change our mindsets and suddenly everything will be simple and the right choices will be clear.

I still wish that documentaries like the one featured in the aforementioned YouTube video would display a wider range of familial attitudes towards autism. While many autism families indeed see their children as afflicted, and still pray for a cure, there are also families who accept their children for who they are, and reject the idea of erasing autism.

I don’t mean to say that the family featured in that video were somehow doing worse, or that their son was “worse,” than the children of families who see their kids as different instead of diseased.

The parents I know who have learned to accept their children as individuals, who will always be themselves instead of “normal,” still have children who throw violent, uncontrollable tantrums when life gets to be too much, or still need to wear diapers past a “socially acceptable” age, and so on. I think the difference is that they suffer less, emotionally, because they’ve stopped fighting against their children’s identities and hoping that one day “their autism” will go away.

After all, we can emerge from disability, but we can’t emerge from autism.

As Jim Sinclair put it,

Therefore, when parents say,

I wish my child did not have autism,

what they’re really saying is,

I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.

And I do know that at the darkest times, when things feel hopeless, many parents have flashes of those thoughts, because they are human beings. These messages are meant to remind parents in those low points that their child is still there, even if they lose sight of them, and that child will remember what their parents say and think of them.

While it is perfectly understandable that so many parents of developmentally delayed children react to the idea of autism as a “gift” with shock and horror, it doesn’t mean that trying to accept these children for who they are is wrong.

Acceptance is not what hinders progress, even if other parents insist.

I think that this really depends on what kind of “progress” adults are looking for and trying to instill.

Non-autistic caregivers with autistic children often fall into the trap of believing that what progress should look like is a lessening of autistic “symptoms,” which implies that the child will look and act more neurotypical.

The problem is that autistic “symptoms” are not the symptoms of a disease, they are either coping mechanisms (stimming, perseveration, scripting, avoiding eye contact) or just a result of how their brain works (not reading sarcasm, obsession, a lack of central coherence).

There are programs that appear to bring about progress because they train a child to suppress their natural behavior (“symptoms”). And then they point to the child who no longer feels safe stimming in front of others and call that progress.**

In my opinion, what progress should look like is anything that better helps the autistic person in question to feel happy and comfortable with their world.

For most, this means learning to connect with and communicate with the people they love (whether through speech, typing, alternative communication systems, or sign language), managing their anxiety and sensory discomfort, and being treated like valued, beloved human beings.

Maybe they will stim in public forever! But that’s not the worst thing in the world.


I want to end with another quote from Philip Reyes, because I think his letter to his classmates after he attended his school’s Fall Fun Night is a really beautiful illustration of how real progress feels:

Dear Friends,

I liked Fall Fun Night. I surprised myself by not fighting accosting stimuli. Accosting stimuli are crowds, loud noise, sound bouncing off the walls, and racing motion. I am proud of myself for going. I decided to withstand it to dive into the world, daring to try not drowning in bitterness about being autistic. I am sorry I seemed to ignore all of you. I had to keep moving to save myself from going into sensory overload. That means I practically tantrum to get out of an overwhelming area. Listening to you talk to me is a delight to me. Healing talk is needed to help me begin to heal from my years of being treated like I don’t matter. Please don’t give up on me. A tap on my shoulder can help get my attention. We can ask Mr. B to help me type with you. I am glad to have you as friends. I am hoping to not ignore you next time.

From, Philip

 


** Because someone messaged me to ask for elaboration, I wanted to include a few links to other blog posts talking about the problems with compliance-based therapy, and why aiming to shape autistic behavior to look more normal (“indistinguishable”) is neither beneficial for the autistic, nor healthy:

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23 thoughts on “Is Autism a Disease?

  1. Kiersten, thank you for the excellent article. As a “allistic”, I struggle with both sides of the autism empowerment movement that you describe. Very well done.

    Steve Borgman

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    • Thanks! I think it’s great that allistic people want to hop on the autism acceptance bandwagon, and every ally helps. And I think it’s also important to be able to understand why the disorder-not-disease concept can be so difficult for many allistics, especially parents, and that engaging in this dialogue is an essential part of making progress in the neurodiversity movement.

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  2. Hi Kirsten, thank you for sharing Philip’s blog. I love what you have written here. Your sensitive and balanced approach of acknowledging the disability of autism while espousing the importance of acceptance is the kind of message that will truly bridge the gap between the Autistic community and parents who struggle to raise their Autistic children. As a parent, I have come to realize we need you to help us. Understanding autism from the inside out and learning to accept those differences and work within it, has truly allowed my son to emerge as a much happier person who is finding his own talents, interests, and purpose in this world.

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    • Thank you very much! And an extra thank you to Philip for sharing his beautiful and insightful writing. He is incredibly wise for his age (more than most adults I know, for sure!) and I really love reading what both you and he have to say 🙂

      I definitely agree that the answer to building confidence and acceptance in the autism community is to bridge the gap between autistics and the allistics who care for and about them. While it can be hard for autistics to be treated as sick and pitiable for something we feel inside is an irremovable part of our identities, it’s important to understand that the parents and charity workers who espouse these messages are not coming from a place of malice, and have the best (if misplaced) intentions at heart. I hate to see what sometimes can feel like an ongoing war between adult autism advocates and parents with autistic kids. I think that a middle ground can be reached if we extend compassion and keep the dialogue open. We’re on the same side, in the end!

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  3. I wanted to add that I read your post to Philip tonight and he responded on his letterboard “I agree that autism is not a disease.” He also indicated he liked what you wrote. Thank you.

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    • Thank you Philip! That means a lot coming from you. I really love your writing and enjoy reading your blog. You do an amazing job of articulating the things about the autistic experience that are often so difficult to put into words. Keep on being awesome 🙂

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  4. Great article! I loved reading and it inspires me quite a lot.

    “While autism is more of a difference than a disease, it is still a disability”

    I obviously get the meaning and it is perfectly ok, still I argue that this wording may be improved. I don’t mean by you (who are making a great work), I mean by the general public and for the respect of neurodiversity.
    Thinking about my very personal experience, when I was a kid I had far greater abilities in logic and mathematics than anyone of my peers. What was for me matter of a flashlight it could took the other children 1 hour of struggling and still might not get it as I would. Should I have called all of them victims of some sort of disability? How would they and everyone else around react to this phrasing?

    The only meaningful difference that I can spot in this scenario is the proportions of the populations.
    Almost everyone is great at social skills and a few people are not: disability.
    Almost everyone is dumb at logic thinking and a few are bright: mh, yes, what?

    The example is taken from a very special situation and is limited to that, of course. But I hope the concept is clearly understood to be valid in general, outside of this example.

    I guess it would be more ethical and acceptable that we (all human beings) understand there are differences in people, that those differences span a bigger area than we might think, and that those differences are present in the population with very strange ratios. Nonetheless all those differences need to be appreciated and taken care of, without a labeling of “disability” if this carries a larger meaning than just “needs some more time to educate on this topic”. In the example above everyone needed more time to be educated but none of them had the label.

    Giving a special role to something just because it happens to the majority is not ethical.

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    • This is a great comment! And I think you’re right; my wording is too black-and-white and makes it sound like “autism” in the abstract concept is itself a disability, which isn’t the idea I intend to convey.

      Though I would argue that it comes down to more than a difference in population proportions (i.e., what is “average” and what is in the minority). The autistic neurotype comes with many traits that are inherently disabling, in the sense that they make everyday activities take much more time and energy. For example, it can take me up to 2 hours to shower, because I have a lengthy pre- and post-shower routine, not to mention the sensory problems of the transition from dry to wet, and then being damp afterwards. This is because taking a shower involves a lengthy series of steps that must be assembled into a “program” in my brain before I can “run” the program and execute the overarching task itself. So, going through the motions of my shower ritual takes a lot more mental effort and energy than it does for my allistic partner. This is something I really struggle with, and one of the disabling “trade-offs” that comes with my autistic brain (that does many *other* things much better than an allistic brain).

      When I was a child I was not disabled, I was simply in an environment where I was expected to behave and do things a certain way, and deviance from that standard was seen as wrong or bad. In this sense, I agree with your point. Yes, I had the same problems with hygiene and self-care, but I had a mother who would literally walk me into the bathroom and stand next to me to make sure I brushed my teeth. Or who did my pre- and post-shower (or bath) ritual *for* me. Then I moved on into the adult world, where I am expected to take care of myself and my household (which I cannot do), and navigate complex social and executive processing climates that determine my ability to acquire the connections and resources care for myself (e.g., school, employment). In the adult world, I am disabled, because I cannot accomplish a very large portion of the things I want to do, and *need* to do, in order to feel safe, happy, and cared for. This is not to say I’m not safe, happy, and cared for, just that it is definitely a much greater struggle for me to achieve that classic hierarchy of needs than it is for a neurotypical.

      There are ways to emerge from this type of disability. Finding one’s niche, social supports, a live-in aide or spouse to provide care and help with things one cannot do alone, and developing healthy coping mechanisms to deal with sensory stresses. And so on and so forth. I know people who society considers to be “severely disabled” who do not feel disabled at all, and I also know people who proudly identify as disabled, and say that their disabilities do not prevent them from living full lives.

      It’s all shades of gray, in the end.

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      • Well, my real life friends are all friends I made in public school, via the old “mother hen friend” method. (AKA, I was lucky enough to have been actively befriended by a few neurodivergent extroverts who then enabled me to make more friends.) I didn’t make any friends in college, really. And then I rely *very* heavily on my partner, whom I originally met through OKCupid. I also have a lot of friends I’ve met through facebook groups (mostly pertaining to autism), and while I’ve never met any of them in person, they fill that need for socialization and conversation to a pretty satisfying degree. Basically, I’m connected because I got lucky, and because I use the internet to socialize…ha.

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      • OKCupid. How do I use that site? I don’t really understand. I have a profile that’s doing nothing. As for Facebook, I guess I will have to go on it at some point. I really don’t care for that site, but I guess it serves too many purposes to avoid it.

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      • I love it! Though, of course, it’s different depending on where you live because it all depends on the people. But personally, I really like OKCupid because of the question/match system. You can answer as many questions as you want, and choose which questions to answer or skip. And the system algorithm matches you with people based on how you and they answer various questions. Like, one of the more famous questions is something like, “Do you think women are obligated to shave their legs?” You can not only mark your answer, but then you mark down what you WANT someone else to answer, and rate the question by importance. So, if you say “no,” and want someone who would also answer “no,” you could mark that question as very important, so it’s given more weight in calculating match percentage. If you don’t care what other people say, or you feel the question isn’t relevant to you, you can mark that you don’t care which answer your “ideal match” puts. Even better, it matches in three different ways, overall match, friendship, and enemy.

        So, if you’re looking for friends who you want to share some nerdy interests (video games, science, anime, whatever), you can skip the romantic questions and preferentially answer personality and hobby questions. The match and friendship percentages show how much you and a person would probably get along. And the enemy percentage is related to how often you answer each other’s questions marked as very important or mandatory the “wrong” way relative to what you each want.

        Like, sometimes I would be a very high match with a person, but also a very high enemy match. Because we both liked video games, had similar personalities, etc, and yet they answered other important questions in a way that made it clear they were racist/sexist/selfish/etc. A high match and low enemy percentage is the ideal.

        And, if you’re looking for friends, be open about that in your profile and talk about yourself and what interests you have. For example, I was always very open about autism in my profile. I had a really long write up in the “most personal thing you’re willing to admit” section about how I’m autistic, and what that means. I would get tons of messages from other autistics, wanting to talk about autism, or from self-diagnosed autistics who wanted my advice on their self assessments and on the diagnostic process! That was fun 🙂 Good way to make autistic friends, haha.

        The downside of these sites is that you have to be outgoing to a certain degree. You have to be willing to send and reply to messages. I’m much better at writing than speaking, and I’m not as shy online as I am in-person, so I can do that. But making friends always takes effort. The difference with online social websites is that it lets you meet people even if you’re someone who doesn’t know how to find or talk to people in the real world. You still have to find and talk to people, it’s just a little easier.

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      • I’d heard horror stories of what females on OKCupid go through from guys. I wonder if guys have it hard in their own way.

        Either way, what do you recommend I do specifically?

        I feel like I don’t have anything in common with anyone. I’m not *into* anything. I realize it’s probably depression being part of that, or maybe it’s caused by it. It’s terrible. What do you think I should do?

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      • The problem for guys is usually just that they don’t receive as many unprompted messages. Where girls get spammed with way more messages than they can read, guys have to do all the work of sending messages in the first place. It’s basically a caricature of western dating culture.

        Not being into anything in the first place sounds like that’s caused *by* depression. It’s easy to forget that depression is more than just an emotional problem. Those brain chemicals do more than just control mood, and imbalances do more than just make you sad (or flat). Depression makes you tired, removes the ability to focus, reduces memory (esp. short term memory), and removes interest and motivation in hobbies or topics. There’s even more than that, but those are some of the strongest, most noticeable things. So, in this case, I would recommend you see a psychiatrist! Depression is a medical problem, and you should think of it the same way that you think of something like the flu, or a broken leg. You need to treat the depression medically before you can really make progress cognitively (therapy, etc). I recommend zocdoc.com. It’s basically amazon for doctors, and you can book appointments online without having to talk to anyone. It’s a great way to find a psychiatrist if you’re too depressed to figure out how to do that in the first place!

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      • You might be right. I was hoping this was something I could solve with supplements, rather than medications with nasty side effects. I really want to avoid that.

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      • When it comes to psychiatric drugs, I’d give the cliche, Don’t knock it till you’ve tried it. Psychiatric medications get a bad rap, but really, it’s all about cost/benefit. Like, drugs that treat *anything* have side effects, and it’s all about weighing which is worse: the disease, or the drug. Plus, the side effects of antidepressants really aren’t as bad as you might be thinking. The trick is to remember that the brain is way more complex than other organs, and treating depression is much more individualized than, say, diabetes. Something that works for me might not work for you, and so on. It’s a process of trying out different things until you find one that works for *you*. A psychiatrist can guide you through the process. It takes work but it’s more than worth it!

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  5. I also sometimes type things up and send them to a specific person, then later rephrase them slightly so I can post them in a public place to a wider audience.

    About progress being things like “being afraid to stim”, I think having the ability to control the stims better is also a form of progress. I don’t do the things I did in third grade and fifth grade anymore, as I no longer am overwhelmed by stimuli quite so easily. However, that could simply be a consequence of growing up and my brain changing on its own, not behavioral therapy (as the only behavioral therapy I had was when I was little, like ages 3-5).

    Still, the world needs more blogs that tell what autism feels like from the inside, rather than only what it looks like on the outside. It’s only by understanding us that they can actually help us.

    I saw some of the horrible comments on that video you linked to. I’ve seen some people in the past who actually “oppose autism” and claim that autism is both horrible and doesn’t exist at the same time, saying it’s nothing more than an excuse to be annoying. Such people are vocal, but I imagine they’re a minority.

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    • I definitely do believe that children stim differently from adults, and that an individual will stim differently as they age. I’m the same way! I have fewer stims, and my stims are much “smaller” than they were when I was a child (I no longer jump up and down constantly, for example!)

      What I’m referring to is the type of ABA therapy that uses classical conditioning to train children out of expressing their outward autism traits, and sees stimming as a problem to be eliminated, rather than as a healthy self-regulating behavior. “Quiet hands,” is a traumatic trigger for many adults I know who were put through ABA as children. And the idea that a child cannot learn unless they are “table ready” (aka completely motionless) is very damaging to children who need to stim at least a little bit to focus and handle the overload they experience from normal school environments. Accommodation is giving a stimmy child a wobble chair built to enable quiet, non-distracting movement (or letting the kid take breaks when they feel overwhelmed), but the disease model just treats the stimming like pathology, and says that it should not exist in the first place.

      I like to think that many of those people are simply naive, and that if there were a way to explain the autistic point of view, they might feel differently. But that’s really just what I tell myself when I start to feel hopeless about how many people simply hate “autism” and view us as diseased. Sigh.

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      • People tend to assume that others think the way they themselves do. And that just isn’t true.

        Sadly, society tends to view anything which is different as “wrong”. Someone who’s attracted to the same sex? Different, therefore wrong. A girl who acts like a boy (a “tomboy”)? Different, therefore wrong. A boy who acts like a girl? Different, therefore wrong. Someone who worships the same god, but in a slightly different way? Different, therefore wrong.

        We’re very different. Granted, when most people talk about autism as a disaster, as something terrible, they almost always have its low-functioning form in mind. I know someone online who shows many signs of high-functioning autism himself. I pointed it out to him, and he said that he doesn’t have autism… but his severely low-functioning sister does. (which probably is why I detected it in him; autism often runs in families in some form, with only the most severe forms getting noticed)

        Even though the autism haters usually are thinking of its low-functioning form, I see many things mocked as being “very autistic”, “the purest form of autism”, and so on. And the things that are mocked as such often tend to be actual autistic traits (regardless of whether or not the person in question has autism). I see people say things like “learn from other people’s autism” and “stop being so autistic”. There are people who see high-functioning autism as not being real, as being an excuse for laziness, inappropriate behavior, and so on. If they had a kid on the spectrum, or a close family member that they understood very well, they’d learn what it really is.

        We need more shows like “Parenthood” that portray autism’s actual struggles, humanizing the people who have it. And they need to focus on adult characters more. Most of us are adults. Autism doesn’t vanish as soon as we turn 18, and there are people who are convinced that autistic adults do not exist merely because the mainstream media doesn’t bother to talk about us much.

        My manospherian brother has made it abundantly clear that he doesn’t actually understand autism. And he’s mentally unreachable, so I don’t bother with him.

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  6. Pingback: 6 Ways We Can All Eliminate The Stigma Of Mental Illness A Little Bit Each Day | Thought Catalog

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