Autism Hurts (On Autism Stigma)

Autism Stigma: What People Say

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.

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

Jim Sinclair

Edit (9:32am): To avoid confusion, the title “Autism Hurts” works like an adjective and a noun. “Autism” is describing the type of “Hurts” that comes with autism stigma. I am NOT saying that being autistic hurts. I also prefer the term “autistic” or “Aspie”, not “person with autism”. (re: semantics) Thank you!

It’s no secret that I am autistic. If you ask me nicely, I’ll tell you straight up, “Yes, I’m autistic; I’m an Aspie.” I’m not ashamed.

I used to be ashamed, though — I used to hide it because I was taught to feel embarrassed about it, told that I needed to pray for God to take it away, patronized for using it as an excuse.

Is it an excuse?

a reason or explanation put forward to defend or justify a fault or offense.

I suppose autism creates many, many “faults” for those who are autistic. We’re perceived as “lazy”, “childish”, “bad kids”… The list goes on and on, and it’s horrible.

What’s worse is when these things come from family.

Things people have said to me in the past four years:

  1. No! You’re too smart! I want to see proof!
  2. Maybe if your parents just raised you better… they should have disciplined you more. (…And I was abused, thank you very much.)
  3. Why can’t you be normal?
  4. Can’t you see this isn’t right? People don’t live this way.
  5. You should know this stuff. You’re an adult. You need to grow up. I shouldn’t have to tell you how to do things or when to do them.
  6. Why are you like this?
  7. Oh, I wish you wouldn’t talk about that/say that! You just need to pray to God to take that away!
  8. You need to do ___ and ___; I’m not asking for a lot.
  9. [when talking my hobbies] …and? Have you not looked into a job?
  10. You don’t look autistic.
  11. You’ll outgrow it.
  12. Is there a cure? We need to sign you up for this.
  13. Oh, we don’t talk about that! Our family doesn’t get autism!
  14. And? How did you get autism?
  15. I know you were abused growing up, but you need to stop using that as an excuse for all of these mental things! There are programs for people like you that can fix you, and you can be normal.
  16. Why can’t you be like [insert NT family member here]?
  17. Tell me, are you going to live like this when you live on your own? Don’t you want to go out with friends?
  18. Aren’t you embarrassed for yourself?
  19. I can’t hang out with you if you’re going to continue to pull this “autistic” stuff.
  20. Please don’t tell people about your autism when I know them, too. It’s embarrassing, and I don’t want them to think differently of me.
  21. You just want something to be wrong with you so you can have the attention and special treatment.
  22. Stop making excuses!
  23. Autism isn’t real; it’s for people who want an excuse to not have to do anything.
  24. Yeah? Well, I don’t want to talk about that.
  25. That’s the Devil’s doing.
  26. You can’t attend this church. We don’t allow or want autistics here.
  27. I can’t hang out with you; I don’t want to catch autism.
  28. Autism is a disease. I donated to help find the cure. Happy now? Can you stop pretending you have it?
  29. You’re just an ungrateful [insert familial relation here] who needs to straighten up.
  30. You were abused… did that not teach you anything? Your parents beat you well, or they didn’t beat you enough. I would’ve beat you ’till you were black and blue and bruised up, just so I could knock the autism out of you.
  31. What’s a neurotypical??
  32. Everything happens for a reason.
  33. It could be worse.
  34. You seem so normal, though.
  35. My ___ has Asperger’s/autism. [proceeds to act like they can relate/give advice/completely judge me based on the one person they “know”]
  36. So… you’ve heard of Temple Grandin?
  37. Why are you crying? [“Because I can’t help it! I’m autistic, and you’re just putting me down!”] Oh. You’re still making up excuses, I see.

Stigma really freaking hurts, and I hurt for other autistic children in my situation. I even feel sorry for myself.

As Jim Sinclair puts it, “Don’t mourn for us.”

Can we get personal for moment?

I cried yesterday.

I come from a family that does not accept me as I am, and it really hurts. They want me to be “normal” and get upset when I can’t “act normal”. For them, I spend so much time acting normal that, in two hours, I am so exhausted.

“Normal” would be nice, wouldn’t it? I’d be a totally different person… who knows what I would be doing? I’d probably be all over a neurotypical relationship, kissing and making out included. It’s probably “nice” to want those things, but all I want is to have someone to sit on the couch watching television with, someone who dances or is up to learning, someone who likes cats, someone who likes kawaii (cute) things, someone who likes Pocky, someone who accepts my allergies, someone who knows about web dev stuff, someone who wants to adopt, and someone who wants to cuddle only sometimes. I want that in one person.

I’m not accepted as who I am by the people who claim to know and “love” me… “Love” is a confusing thing, especially when they know I’m autistic and they refuse to accept it. I confide in someone, and then they tell someone else who feels the need to have a talk with me about how I’m “wrong” and “need to stop acting this way”.

I don’t want a cure, therefore I do not support Autism $peaks (don’t want to give them attention). I’m not supportive of Temple Grandin, as I disagree with her on almost everything.

I don’t want to be told what autism “looks” like… Tell me, what does neurotypical look like, hm?

I express love differently, and I hate forced affection and confrontations. I freeze with confrontations if I can’t take the flight approach, and sometimes I fight; I have to work hard to hold back my tears. It’s frustrating and more difficult when I provide family who claim to want to learn about autism with genuine material (i.e. material created by Aspies, or at least super-understanding NTs) only to have them reply, “I don’t want to read anything; I want to know from YOU.” Unfortunately, some links I did provide were from my personal blog, where I sometimes post about the Aspie life.

I can’t defend myself, because no one will listen. They don’t want to learn; they don’t want to believe it’s “in the family”. It’s “embarrassing” for others to find out I have it… I’m supposed to keep my “problems” to myself. To the ignorant, I’m a stupid puzzle piece that needs to be solved.

I am constantly picked at for not doing something perfect. I’ve selective mutism. It’s going to happen; I can’t help it. I’m not going to be able to speak, especially if you’re confronting me. You can’t make me speak… I can make sounds, but I literally cannot speak — sometimes this lasts for several hours, sometimes it lasts for several days, sometimes it lasts for several weeks, sometimes it lasts for several months.

I’m autistic, which is the thing new parents fear. Truth be told, I honestly want to adopt at least one special needs child. What’s so wrong about being autistic? I can’t speak for those with Down Syndrome or other syndromes, but I can also speak for myself on Tourette Syndrome… I’ve Tourette Syndrome (interviewed on Yes and Yes).

I’m autistic, and I just want people to love and like me for me. I make rockin’ websites and code. I’ve become an expert in my special interests, one of which is blogging.

Autistic kids rock. Get over it. We’re here to shape the world.

If you have any questions about autism/Asperger Syndrome, I can do my best to answer. I’ll answer them publicly… send them in on the form, and I’ll get them from Charlise’s email. Answers are typically more reliable from someone who has autism rather than from someone who merely studied it, I’ve realized. If it’s too personal for me, I’ll answer it privately.


Comments on this post

Liz I’m so very sorry that your family isn’t accepting. You also mention that your parents were abusive and that’s horrible and hopefully you can get away from these people and find people that love you the way you are.

I have a child with allergies and when I see her struggling and unhappy I wish she never had allergies. I wish I could find a cure. I wish I could help my child live a “normal” life. None of that means I wish she didn’t exist. She is not her allergies. My mom has arrival condition that seems to define her life. She has to plan and carry things around and is often too sick to be with us and I wish she didn’t have that illness but I don’t wish my mom didn’t exist or that she was someone else. I don’t think an illness, disability or single diagnosis defines who we are. So when people search for causes, cures and answers to autism they are not wishing you away. They are wishing life was easier for you. You are not autism. You are a person who has autism and that presents with certain difficulties and that is what people wish away for you. They wish you didn’t struggle with a family who doesn’t understand you. They wish you could find a mate to spend your days with. They wish you a happy and healthy life.

On the autism thing and me not being my autism: I am autistic. It’s important to explain this, because people think it’s more comforting to say someone has autism and is not autistic, but it’s actually insulting to say I am not my autism, because I am my autism. It’s a part of me, and I’m not upset with it. I don’t mind it. Autism doesn’t need a cure; it needs acceptance.

There’s a page with links on Yes, That Too explaining autism and how autistics are autism, as well as one on Autistic Hoya about semantics.

“A person with autism” is considered an extreme insult to many in the autistic community, whereas “autistic”, “autistic person” and “autistic individual” are better. Many people want person first-language because they don’t want to see autism as a part of a person, even though it’s part of someone’s identity as much as their sexuality, race, heritage, etc. They’re not comfortable enough for it.

It’s most common with self-advocates.

If people looking for a cure wanted to make the world better, they could instead consider spreading acceptance. “Autism Awareness Month” is a joke, and throughout the autistic community, it is known as “Autism Acceptance Month”. Autistic Hoya’s post on semantics is really good, and I encourage listening to it to understand what I mean.

The only reason my life is not “easier” is simply because people are ignorant and gain much of their knowledge on autism from Autism $peaks and others who gained their information from there. The most I can do is continue to write about it publicly.

A good example is Autistic Hoya’s cancer analogy: Cancer is a disease; people with cancer are not called “cancerous people” but “people with cancer” instead. Cancer does not necessarily change the way one experiences their life. Autism is not a disease. It does not kill or harm on its own; it is lifelong, and it shapes the way someone experiences their life.

The analogy I use is with my hair tie: I have my hair tie on my wrist. It does not change the way I view the world, and I can take it off and put it on whenever I please. It is not all-pervasive. Autism is a neurological developmental condition that is considered a disorder (i.e. Autism Spectrum Disorder). It is not a disease. My brain is physically different from that of neurotypicals (NTs), allistics, or non-autistics, depending on the term you’re most comfortable with.

I prefer “autistic”. I am autistic; I am my autism. I’m actually quite proud.

It’s not really the same as allergies, either — people with allergies aren’t called “allergic people” unless in various other context (e.g. peanut-allergic person).

People looking for cures for autism are wishing people away. They want a cure for autism — to avoid it — and I don’t mean to be rude, if that’s how this seems, but that is how a lot of the autistic community sees it, and I don’t believe non-autistics can truly understand what it’s like or ever see from an autistic’s point of view the insults or the stigma or how research truly varies between the allistics and the autistics. Many people running these “autism cure” research organizations don’t personally have autism, or they just know someone with it. They refer to kids as “autistics” or “with autism”, instead of the persons’ names, and there is a lot of stigma.

It’s not all about mating or anything. There is nothing wrong with me.

Anyways. Long story short, I am my autism. I am autistic. I do not have autism. It’s better to ask on a per-person-basis, and the article I linked to from Autistic Hoya is really, really great, and there is an audio for it as well. Normal is overrated. I’d rather die than take a cure/be cured. Autism is a part of me, and I am autistic. I don’t really know how else I can get the point across.

Thanks for your comment, though.