01 November, 2010

Autistics Speaking Day post

The other day my mom showed me some articles in the newspaper about autism. Midway through one article (http://www.thestamfordtimes.com/story/492905), I read this:

One of the center's clients, a Rowayton resident who wanted to remain anonymous, said her daughter used to avoid eye contact and, like many autistic kids, repetitively flapped her arms and walked on her toes. The client's daughter has been working with Rohdie for a number of years, and when asked what challenges the behavior analyst and now the Southfield Center has helped her daughter overcome, the client said "Oh my God, everything."

"You would never be able to tell she was autistic," the client said, adding that, with the help of Rohdie and other professionals in the field, avoiding eye contact, flapping and toe walking issues have stopped for her daughter.

This kind of attitude from parents and professionals makes me want to scream.

I generally don't like writing about my disability experience in much detail. I'll just say that a) a lot of important things are hard for me to do consistently and independently, b) I have severe anxiety problems, and c) a and b feed into and increase each other. At this point, my dreams for where I might live and what I might do after college are pretty limited which is depressing (and increases my anxiety, ha ha). I think it would be very easy for me to end up in an emotionally and physically dangerous situation, and I'm working hard to avoid that.

A lot of people with autism spectrum disabilities have it way worse than I do--their opportunities for communication may be very minimal, or they may be so overloaded by sensory or emotional experiences that they self-injure and seriously hurt themselves. Younger people with ASD are often bullied, which can result in various kinds of damage. And all people with developmental disabilities are much more likely to be abused.

People with ASD have real problems. That some of us walk on our toes is not one of them. When I read the above quote, I had several thoughts:

1. Passing as non-disabled is not always a good thing because it means that people don't realize you need help, and won't believe you are disabled even if you tell them, because you look "too normal."

2. The experience of living as a passing person can be really isolating and scary because you are constantly trying to hide your reactions, feelings, and body language. It makes you pretty tense and it makes you feel like the people in your life don't really know you.

3. When "not looking autistic" is equated with "being better," that makes it hard for an ASD person (and their parents and professionals) to develop a good set of goals. Instead of goals like, "This problem is making my life harder--how can it be improved?" the goals are like, "I look autistic--how can I hide it?" In the person's mind, goals that are objectively good (like being a kind person, and trying to be happy and successful) become mixed in with the subjective, energy-consuming goal of "not looking autistic." I am still trying to untangle this crap in myself.

4. Some people "stim" (rock back and forth, toe-walk, hop around, run around, vocalize, flap their hands, etc.) because it helps them deal with overwhelming emotions or sensory information. Some people avoid eye contact because eye contact makes them upset. If they stop stimming and start making eye contact, they may be a lot more stressed.

5. Even if 1-4 weren't true, it's still a waste of resources that would be better spent dealing with the real problems that ASD people have.

6. I could try to give these parents and professionals the benefit of the doubt, and say that they're being thoughtless and inefficient. But when I read this stuff, it doesn't just annoy me, it hurts me. It says to me that these people care more about not having to look at a visibly Autistic person than they care about actually helping people with ASD in meaningful ways; that they would rather ASD people suffer in silence than be happy and loud. That doesn't feel like ignorance, it feels like hate.


  1. I really appreciated your post. As a woman with multiple disablities, who has become very good at "passing," I face a daily and isolating choice of putting myself in a situation where I would have to defend my status as "disabled" or hiding important parts of myself by committing lies of ommission. Also, as someone with SPD, I also apreciate how the ability to stim is a key part to dealing with other issues both related and unrelated to my disabilities. I've found socially appropiate methods of stimming, but as I've grown older, I've realized that sometimes rocking in my chair is better than breaking into tears because I can't concentrate w/o motion. Finaly, though, I'd like to offer a megar defense of parents such as those described in the article. Unintenial ignorance might be behind there appearntly superfical vainity. In their mind, the external symptoms might represent Autism. They might truly believe that the toe-walking, hand flapping and eye avoiding are "everything."

  2. I LOVE this post. Thank you, thank you, thank you for writing it--I've wanted to say things like this and have never been able to.

    I'll be sharing your post with as many people as I can today.

  3. Beautifully said! Thank you for writing it and reminding us parents once again that there is nothing to hide.

  4. zellie--I know they're ignorant, I just don't care. (kidding, kidding, of course I care when it's people in my family, then maybe I can expend the effort of trying to be compassionate--but like, really? being a parent is a job. if you don't have the reason or compassion to raise your kids properly, then don't have kids. doing this stuff to your kids is not proper behavior.)

    anyway, thank you for being so nice everyone. and Kat thank you for starting (part of) Autistics Speaking Day!

  5. This is a fabulous post-and I thank you so very much for sharing it. I am a mom to four kids..3 of whom are autistic. You are where they will be one day-I am so happy that there are people willing to share pieces of their lives so that I may be a better mom. thanks. :)

  6. I think Zellie might be on to something when she speaks about parents considering our outwardly visible signs as "everything." Too often I feel that people who do not understand only relate to people they don't understand through that which they can perceive.

    I think that this ties back to what you were speaking of when you wrote about how difficult it is to be autistic and passing (I experience this, too, believe me).

    I feel that when an "autism mom" sees her child she very often is not able to relate to them. She is not able to divorce herself, her own feelings and her own experiences from the experiences of her child (Say, isn't this what they accuse us of doing? Quite Freudian).

    I feel that they cannot relate to us because they cannot understand that we are different. However much they tell us we are different and treat us as alien to themselves they can no truly comprehend. They can not comprehend and they can not respect our difference and because of this they do not give themselves the space they need to discover us as people in our own right and on our own terms and begin to relate to how we are.

    Hope that makes sense.

    By the way, amazing post, as always.

  7. Well said. I have my son's IEP on Friday and will purposefully take out any goal designed to make him look typical and replace it with a self-advocacy goal. I appreciate all you have to say. Thank you.

  8. Excellent post. A student of mine (college English) wrote a research paper about the virtues of ABA. He argued very well though I cringed a lot at some of his suppositions. He wrote it to praise the progress of his half brother who is now "indistinguishable" (CAN's word). I inquired, "When does he get to spin, rock, turn off eye contact?" He didn't know what I meant. I said that sometimes the home might be safe space for these self-soothing behaviors. Again, a puzzled look. All that mattered to him was that his half-brother was satisfying HIS own need/demand for a "grea kid brother."

  9. What a great post Amanda. My parents worked very hard to get me to the point where "you can hardly tell" but no one ever thinks about what it costs me to pretend like that - It takes a lot of effort. I am 40 now and still trying to get my degree. In spite of my very high IQ and my 'normal' behaviour the university environment has never worked for me because most of my effort is spent 'fitting in'. This year I have gone back to uni and am 'out' about aspergers. I can really relate to what you said about trying to hide emotions or reactions and becoming stressed and tense. I can also relate to what you said about appearing 'normal' making it harder to get help when you need it.

  10. Great post! I'm on the spectrum too. Hang in there, college and the years directly after were the hardest for me. But, I'm getting along fairly well now. You can do it!

  11. Excellent post. Your comment “People with ASD have real problems. That some of us walk on our toes is not one of them.” resonated with me as an autism researcher. I’m proud to be a part of the Gateway Project (www.thegatewayproject.org) that believes in research with autistic adults, not just about autistic adults so that we investigate research questions that are considered relevant by the autistic community.

  12. Thank you soooooooo much for writing this! As a person who has grown up with a visible physical disability (severe rheumatoid arthritis) I'm increasingly angered by the amount of time that was wasted trying to make me look more "normal" rather than trying to improve my quality of life. I spent a lot of time trying to communicate this to the medical establishment and was always rewarded with blank stares or a "we know better" attitude. You're post addresses something that our society tries to sweep under the rug, and I really appreciate you for taking a stand.

  13. Worst part for me in regards to number 2. (The experience of living as a passing person can be really isolating and scary because you are constantly trying to hide your reactions, feelings, and body language.) Is that I have done it for so long and got so good at it, that when I relax and start to be me, it almost feels like I am putting on being autistic... People have commented "you don't normally do that" with no idea how much of an effort it is not to!

  14. Thank you for this post, I completely agree with you, what you talk about is one of the reasons for which it is very difficult to me to read articles on autism, I can't stand the fact that I will read so painful things and immediately think about the way people taslked about in them must feel.
    I hope that most people with understand soon that showing less autistic traits does not mean being happier.

  15. @The Untoward Lady:
    Yes and the fact that so many "autism societies" describe this way of perceiving their children as the right doesn't help at all.

  16. I really really appreciate this post as well! Thanks so moch for writing it! I will be passing it on to others I know.

  17. Ok. I am a parent of a child recently diagnosed with autism. I have no interest in eliminating the behaviors that give him away as having autism. I do, however, want to give him every chance to live a happy, fulfilling life. What help do you think he should receive? What challenges are important to address? All I'm going on right now are the things the psychologists are all telling me, which of course, involve eliminating all signs of autism. What do YOU wish someone had done for you as a child?

  18. I agree with you about passing. I have sound sensitivity disorder, and when I go out to a restaurant, I try to explain this to them and that it means I can't sit near small children. Since small children tend to cry and make sudden loud noises.

    More recently I have had to leave an Olive Garden restaurant, after being patronized about how it's a "family restaurant", as if I walked into Chuck E Cheese, and asked to sit away from kids. Chuck E Cheese is a chain of family arcades, aimed mostly at kids. I left, after the manager half apologized to me, saying again it was a family restaurant.

    So I haven't been out to eat at a restaurant for awhile, because it was summer, and it seems restaurants aren't restaurants anymore, they're the same as McDonald's. People bring their kids there and don't even try to behave them.

    Now, sometimes I think if I didn't appear so normal, maybe they would listen. However, I understand the struggles of not looking normal and having a form of Autism, and the myriad of struggles with that, and dealing with a society intolerant of neurodiversity. It's just, really is it so much to ask now that I could sit away from children in a restaurant? Really?

    Things have become so bad, that now people are suggesting kids are banned from restaurants. Due to a lack of staff requesting that parents with uncontrolled kids leave, and parents who feel they're entitled to eat while their kids run around tripping over waiters and patrons.

    All in all, the worst part is parents attacking me before I even have a chance to mention my condition. Assuming I'm a "child hater", because I'm child free. I have been to some childfree boards, and they can get way over the top with their views. However, it's a bit much to assume because someone is trying to save your child discomfort, by asking the parent to be responsible enough to understand I am putting myself out there, to see their kid doesn't go off crying because I might jump or yell at a sudden loud sound.

    Do people think I do that because it's fun? I've had people suggest I do it because I want attention. If I hated kids as much as they claim I do, I wouldn't care either way if they were upset or not. The fact that I am trying to explain my situation, shows that I do care.

    I'm tired of being made to feel like I'm a burden, because my condition makes it difficult for my family to go out and have a nice dinner. I'm tired of parents lashing out at me, as if that is appropriate behavior for anyone above the age of 10. Seeing parents who care so little for their children, despite claiming to with manic ranting and ravings about what a good parent they are when asked to quiet their kid, yet fail to notice all they have to do is show understanding, and not make a scene that could upset their child. I'm tired of the idea that people should look the other way while a parent ignores the cries of their helpless baby, as they eat. Why is it that a well behaved patron, who happens to have sound sensitivity, is less welcome in a restaurant then a parent with a loud and disturbing child?

  19. For Kim, who wants to know what someone should have done for me as a child...one of the biggest things would be to recognize that forcing eye contact does NOT mean I am "listening" to what you say, in fact it actually cuts off my ability to do so, and no, I don't know how that works, but I am far from the only autistic who finds it to be so. To this day my father laughs at me and says I'm lying and only making it up to not have to listen to him, but all through my childhood all I knew was that I was being punished for *something* I usually couldn't identify( since I wasn't hearing the words that might explain that crucial bit of information, being instead transfixed like the proverbial bird hypnotized by a snake).

    Consequently, I ended up feeling nothing but terror at every possible course of action, not knowing what would provoke being forced to make eye contact, which is indeed at least as upsetting to me as encounters with flashers and frotteurists have been( and I think I may get more upset by those things than many people do!), and at the same time failed to learn what was actually being asked of me.

    I have been known to feel acute anxiety as an adult at seeing a painting of a man with the same color eyes as my father, even though normally painted eyes do not have the same upsetting effect that real ones do, just because of the triggered memories.

    I suppose I sound angry and maybe to some degree I am, but if you want your children to love and forgive you( admittedly I had other reason to not, that were more to do with his bipolar disorder than my autism---but this is the big thing that stays in my mind), please do not do this. If eye contact is so much valued in your world, teach it as a skill like acting lessons, and know that it has no internal value to the autistic making it, but instead great cost.

  20. I don't know Srikanto, it doesn't really sound like the same thing