03 January 2012

There's something wrong with you

Trigger warning: Extensive discussion of ableism and identity.

An accessible audio recording of this post:


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"I do have [autism] but I don't like to be reminded that I do. It makes me feel abnormal."

"There was something affecting and influencing my mind that wasn't...me."

"It's like I have a disease and there's something wrong with me."


Each of those quotes come from Autistic teenagers whom I know. And in all three situations, I felt powerless and terribly on edge, triggered by the statements that had just been made. The first came in a private message from a young woman, and was disguised as an offhand remark. The second came during a conversation over instant messenger during a conversation about sensory issues, and was written by a young man. The third came from a young woman during a social skills group therapy session, and at the moment she said it, she was crying with her shoulder shaking.

Each situation triggered me badly, but in every instance, the most adequate word to describe my emotional reaction was devastated. I was -- am still -- devastated that young people grow up believing that difference is bad, that autism is something terrible, that there is something wrong with them for being different, for being disabled.

That's how pervasive ableism is in our societies. The most well-meaning of parents, teachers, and professionals unwittingly, and in most cases, unintentionally, perpetuate this mindset -- that something is wrong with you if you happen to be Autistic. If you're different or disabled at all.

If you follow the rationale behind the vast majority of therapies and interventions for Autistic people to its natural conclusion, the end goal of most of these therapies and interventions is to make the Autistic person appear and act as non-Autistic as possible. Applied behavioral analysis works feverishly to eliminate stimming behavior. But the vast majority of stims, such as hand flapping or rocking or pacing or fiddling with objects, do not harm anyone. Including the person engaging in the behavior. What's wrong with stimming? The only thing wrong with stimming is that the vast majority of non-Autistics don't do it, and view most stims as bizarre or frightening. That's all. It's an attitude.

What is the purpose of most social skills therapy? To make an Autistic person indistinguishable from his or her peers. And of course, some therapies from out of left field like chelation, which have the explicitly stated purpose of looking to recover or cure Autistic people. (The point being to make the Autistic person actually become non-Autistic.)

This does not mean that all therapies or services are bad. Certainly not. It's a gross misconception at best and an egregious slander at worst to assert that "Autistic self-advocates" somehow oppose all forms of therapy or services or accommodations. There are positive means of therapy. Plenty of non-Autistic people benefit from seeing a counselor. So can Autistic people. Some Autistic people benefit from medications, often for co-occurring conditions like depression, anxiety disorder, or bipolar disorder. Many Autistic people can benefit from the services of a part or full time aide, whether to assist with travel or seeking employment or with taking care of hygienic needs. Some Autistic people might need more services and supports in order to live happily, while others might need far fewer services and supports -- and some might be able to thrive with none.

It's when the goal of therapy is to eliminate autism -- or the appearance of traits associated with autism -- that there is a problem. This is a reflection of ableist ideas in our society. Even the language commonly used when discussing autism reflects this ableism.

Despite best efforts from both person-first language advocates and Autistic people who oppose person-first language, major newspapers still write that people suffer from autism, or suffer from Asperger's syndrome. Reputable news sources often refer to autism as devastating and frightening and mysterious. Autistic traits are frequently described as deficits. Parents asked about their children often say, "I knew something was wrong with my child." Some parents talk about their children -- young or adult -- in this way even when their children are in earshot or sometimes the same room.

We understand what you are saying. We hear very clearly that something is deeply wrong with us. With our brains. Or with the way we are.

That's more than troubling. It's beyond frightening. The year is now 2012. People have been talking left and right about the successes and advances the autism and Autistic communities have made in the last year. Plenty of folks look forward to expanding initiatives, launching projects, continuing good work. It's the New Year. The prevailing attitude of a new year is always one of hope and optimism. Away with the old; it's a clean slate; we have a chance, 365 days of chances, to do something good and right and worthwhile. And that's perfectly fine.

But unless we can begin to grasp the depth of the ableist backbone to societal attitudes toward disability in general and autism in particular, we will not make any progress to combat these attitudes. More young people will break down in tears, confessing their deep-seated fear of being looked at as abnormal. More young people will be marginalized and made to feel alone. The societal insistence that something is wrong with you will drive more Autistic people into depression and anxiety and learned helplessness, and in some cases, to suicide. This external attitude, all pervasive in our societies, will turn into an internal mantra -- something is wrong with me.

Autistic children need to be taught from an early age that they are okay. That nothing is wrong with them. That there are people like them. That some of those people have gone on to become happy and successful in pursuing their passions. Autistic children need to know that they are different, but that different doesn't mean bad. Autistic children need to know that being Autistic means being disabled, but that disability doesn't mean inability to live fully or happily. Autistic children need to be around other Autistic children, so they'll know there are kids like them. That they're not alone. Autistic children need to have Autistic adult role models in their lives, so they'll know that people like them can grow up and learn to cope with the challenges of being Autistic in a world dominated by non-Autistics.

One Autistic child at a time; that's how the paradigm of something is wrong can change. That's how institutionalized ableism can be fought. Little by little.

I have a dream that one day, no Autistic children or youth will be subjected to something is wrong with you. I have a dream that one day, no Autistic children or youth will be found crying, terrified that some "disease" makes them "abnormal" and less than human. I have a dream that one day, all Autistic children will be raised to have confidence in themselves as people. I have a dream that one day, all Autistic children will know from an early age that they are okay. That nothing is wrong with them.


13 comments:

  1. 100% THIS.

    EXCELLENT distinction made here between therapies and services aimed at increasing autonomy and offered to people with a wide range of configurations (AAC, counseling, OT, etc.) and "curing" autism/extinguishing autistic behaviors/indistinguishability/shaming and stigma. Self advocates aren't advocating for no services--we're advocating for an end to ableism, discrimination, abuse, stigma, and shame, which can be (and often ARE) disguised as "therapy."

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  2. we try to teach my daughter that she needs to learn how to fit in JUST ENOUGH with us NTs to be able to function in a world where we are the majority... she doesn't have to NOT be who she is but she does need to follow basic rules and meet certain expectations ( like showering to not smell offensively. ) As for stimming - we just hope / try to replace things like picking skin till it bleeds with some other form...

    The one thing I can say I have been successful at is teaching her to assert herslef - to remind people that who she IS at core is no one broken or wrong or in need of pity - that yes she may be odd or different, but so are they. And as long as she doesn't hurt herself or others she has every right to be that way and demands equal RESPECT.

    She is lucky - in her age-range there is more openness about the diagnosis than ever before. Parents talk to one another and arrange for kids to meet. They meet in social skills therapy sessions. They meet rnadomly and becuase they are not scared to admit to being aspies, discover one another naturally. She has a host of ASD friends.

    I think in the long run she'll be OK ;-)

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  3. A lot of people ask what it is I "do" since I'm not working. Much of it is stuff that would hae been done had I been appropriately diagnosed. I was raised to be helpless in general, that seems to be the method of choice by my family, but more could have been done with the appropriate supports in place in school.

    I was deemed a "failure" in college with a 4.0 GPA because I needed a break for a term, had nothing but pizza in the fridge, and was living in "squalor" (er, primarily, laundry anywhere).
    Setting aside for a moment that this is what I've been led to believe is standard living in college, though perhaps more of a "male" way of getting by, and that this is a gross overreaction that was unfortunately common in my life for about twenty-six years, there is this little issue-

    No one taught me to clean.
    No one taught me to cook.
    I learned to do laundry on a teen tour from a counselor.
    Only thing I was taught was that I "had" to make great grades, which I had, and yet I was still getting called a failure, and about to lose my home/college career and forced to move back home (that was going to happen over my dead body, fought tooth and nail on that and won).

    I can't really emphasize enough the need for more practical lessons. In learning them now, as well as time management for autism(holy crap, it's different from the time management they tried to teach me when they just thought I was a "disturbed" NT).

    I was really good at pretending to be normal, for short periods. I've only recently started to stim more. My boyfriend says it seems to calm me down, and give me a longer rope to venture out into the world on.

    Seriously, embracing the autistic part of me has led to me learning so many things. I cook now (thank you, wellbutrin), almost every night. I am fairly good at getting laundry done. Much better at scooping litter boxes and doing dishes.

    These small things are a) practical and b) make me feel great about myself because These are instant-gratification lessons. My boyfriend thanks me for every thing I do, thanks me from work for his lunch, thanks me in person for cooking dinner.

    It's a daily struggle to do these things and we're still looking for the best way to help me accomplish them, but the thing we are aiming at is taking that autistic tendency to find security in routine and give me a foundation to stand on.

    The foundation is different for everyone. For whatever reason, being a housewifey type seems to be "doing" it for me. It's not the end of what I aspire to, but it appears to be having a profound effect on my self-esteem.

    It has nothing to do with looking normal, or if I stim, if my voice doesn't appeal to others (hard of hearing), if my grades are the best or even if I accomplish all my chores every day. If you can't feel good about who you are when you are home alone, how the hell can you feel good in public, no matter how good your act is?

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  4. I have a cousin whose parents took her to a therapist when she was four. The reason was a series of events that began when she was asked what she wanted for her fourth birthday. She said she wanted a barbie doll that looked just like her. Her parents bought a dark -skinned dark haired barbie. When she opened her birthday present, she burst into tears. She was taken to the ToysRUs to pick the doll she wanted. She chose the blonde, white, barbie doll. My cousin is the child of two African American parents. She is a very pretty, dark skinned child. In less that four years, in an environment where over 90% of the population around her was of her own race, she insisted she was white. She said the most horrible thing in the world, was to be black. Her parents, extended family, neighbors, all of us, were devastated. It became a community crisis. How had this child taught herself that being dark was bad? The therapist showed them. She learned from the television programming. The way others spoke around her. I view life through the lenses of who I am. I was taught by my parents, grandparents, and extended family how to combat what others said I was. It is hard, but if we as parents don't show our children that they are first and foremost fine as they are and then build to help them overcome their challenges, we are contributing to their future depression and mental health concerns. First we must understand what we are doing to our own children. I hate to keep returning to racism in my examples but there it is.

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  5. Lydia,
    As always, I am learning so much from you. Beautifully written, thank you.

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  6. There are beautiful, deep, meaningful points made in this post. I agree with most of it, and really value the general idea behind 95% of it. The word needs to be spread, and attitudes and paradigms MUST change.

    However, as a parent of an autistic child, there are a few things I would like to remind you of. My child, and many others that I know of, DO SUFFER because of having autism. And it isn't always suffering because of societal norms or therapy trying to change them.

    My daughter suffers because everyday parts of the world hurt her ears, everyday sights throw her into panic. Because she has so little capacity for reasoning and self control of emotions, not getting exactly her way EVERY time causes incredible meltdowns that include banging her head, slapping her face and body, and at her worst, biting or pulling her hair out. She suffers from ongoing skin issues on her buttocks because she is still in diapers. I could go on, but this is a small list.

    Yes, she has great joys and pleasure as well - at times I think she can experience joy better than the rest of us "nt's" do. But her strangely-wired nervous system/etc DOES HURT HER. She spends so much time crying, screaming at the top of her lungs, fearful, and anxious.

    And that's not to mention all of the stuff that my husband and I go through in helping her to be more comfortable, helping her to learn that she can't always get her way. There's SO MUCH to work on - and nearly none of it has to do with 'fitting in'.

    Again, I love and appreciate this writing, and I really love the thought about helping my daughter to better understand autism and build positive self esteem first - above treatment. I NEVER want her to feel less human, or diseased. But nothing in this world is so black and white, please don't dis-value the change, work, and trauma that my daughter and us DO go through on a sometimes-daily basis.

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    1. @visionofautism: I know quite a few autistic adults who have auditory sensitivity and wear hearing protection to block city noises. Would this be possible for your daughter? Likewise, if bright lights are a problem, how about sunglasses?

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  7. Dear visionofautism,

    I did not mean to imply that there is no suffering or pain associated with being Autistic. But I do maintain that this suffering is not caused, at its root, by being Autistic, but by being Autistic in a world not made or developed to accommodate Autistic people. Jim Sinclair puts it best, when he writes in his essay "Don't Mourn for us."

    We need you. We need your help and your understanding. Your world is not very open to us, and we won't make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it--and then do something about it. The tragedy is not that we're here, but that your world has no place for us to be.

    As an Autistic person myself, I have certainly experienced terrible anxiety and sensory overload, and certain tactile stimuli do cause me physical pain. Please do not think that I am "dis-valuing" that very real pain. I have experienced it. What I am trying to say is that it's not the autism itself that is inherently bad (nor is it inherently a good thing; I do not ascribe to the "autism is a wonderful gift!" kind of rhetoric). Rather, it's what happens when an Autistic person exists in a world not made for Autistic people. Carnivals and rock concerts weren't made to accommodate me, and neither were gigantic supermarkets or retail stores. Or malls. Or airports. It's when those interactions occur that suffering is caused, but the suffering is not inherent to the autism.

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    1. @visionofautism I can understand what you are saying. It's not easy being Autistic in a world that does not accept 'Being Autistic'. For me, being Autistic and trying to make it in the medical field is very hard because practically everyone in the medical field are NT. Everyone attributes their lives to feeling connected to one another, yet Autistic people most of the time seem to be disconnected for their differences. It almost makes it sound like 'fitting in' is the only way to live our lives. A lot of people on the spectrum question themselves because of the pressures of 'fitting in' to an NT world. The medical field which I thought was all about helping others, is really a very social field and 'big' business. My family want me to 'fit in' because I am in the medical field. However may be I can help make the medical field an 'Autistic friendly' medical world where there are 'no' social pressures in getting a job and it is all about helping first.
      I have a dream 1 day NT people will truly understand and accept Autistic people. That 1 day Autistic people can walk down a street not needing to go in overload because everywhere they walk is sensory friendly and easy to get through a single day. Though I feel eventually that Autistic people will have a choice to either completely 'fit in' or be Autistic depending on how well they are dealing with being Autistic. One day NT's would be able to help any Autistic person when need be and Autistic people would not feel overwhelmed, anxious, or scared. Though this is a dream I have, we are from it. I hope I can succeed in the medical field performing ultrasound tests however I feel very pressured to 'fit in' in a NT social world. @Lydia Thanks for your post and I liked how you responded to @visionofautism.

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  8. A question. Do you disagree with asking an autistic child not to stem during school when academics are happening. Don't all children need to learn when they can get up, talk, act freely. By teaching a child not to get wrapped up in their own activities, but pay attention to what is going on for their benefit, is not treating them differently but the same.
    I'm a mom, and when I read your thoughts initially agreed with you completely. We never keep Ben from stemming at home, and generally not out, unless he becomes loud in a restaurant. But then, we all need to be able to get along, and value others space/rights/wants as well as our own and our children's.
    thoughts?

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    1. I find I am unable to pay as much attention to things if I am having to concentrate on not rocking, humming, etc Often I do such things *because* I am engaged with something. If you make me stop I then have to concentrate on stopping and can't spare as much attention for whatever is going on.

      I have heard that some people have had success redirecting stimming behavior, to something less disruptive, if that is possible it would be a better alternative by far then trying to prevent stimming entirely.

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  9. It is said that one person's rights end when they infringe on another person's rights. My solution to such a conundrum is a third option. Rather than either allowing the Autistic student to stim in such a manner as to distract everyone else, or forbidding the student from stimming, accommodate the student in one of the following ways:

    1.) Allow the student to stim freely and as needed in the back of the room (to avoid being in the middle or front of the room.) This is similar to a common accommodation for ADD -- that of being allowed to walk around the room, including during tests.

    2.) Allow the student to exit into the hallway or another designated location in the school if he or she needs to take a break from overstimulation, possibly to stim during said break. Again, this is similar to a common accommodation for ADD as well, and is not entirely unreasonable because it does not infringe on the rights of the other students. An accommodation allows the person receiving it to participate like anyone else by giving him or her additional tools in order to be able to participate like anyone else.

    Stimming is not necessarily "being wrapped up in their own activities" either. Stimming can be done to express emotion -- whether positive like happiness or negative like anger. It can be done to compensate for stress or anxiety caused by intense focus on a social situation, a teacher's lecture, or another form of interaction -- in which case, the stimming allows the person who is stimming to be more present in what is happening. It can also be done to cope with sensory overload, which itself is a barrier for being able to be "present" in any given situation; thus stimming done to counteract sensory overload is a good thing, especially if the goal is for the student to be "present."

    As far as stimming in other public places other than at structured events like class or, say, a funeral or religious service, I think that there is no problem. This would include places like public parks or restaurants. Stimming in such a place (obviously, stimming in ways that are not causing harm to oneself or other people) is not an infringement on the right of other people who are there, or a distraction for other students in a classroom setting. Those are public places and Autistic people should be free to be Autistic people in public places.

    I hope that makes sense.

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  10. Very well said, Lydia!

    We need to have more focus like this on the fact that it is perfectly fine to be autistic. There is no reason that we should be made to feel like we are broken, or defective, for being autistic.

    There is no shame in having autism. Autism is not a dirty word. We don't need to hide autism away in an institution or in a back room.

    We should never let anyone tell us that we need to change to 'fit in' if we aren't hurting ourselves or others.

    I will keep on speaking out for autism acceptance and understanding. I will not shut up and go hide away out of sight and out of mind. The days of hiding autism away as something to be ashamed of or kept quiet need to be put in the past and left there.

    We need to keep moving forward toward being accepted as equals. We need understanding, acceptance and support. We won't go hide under a rock.

    We are different, not defective. We are different, not less.

    Autistic rights ARE human rights!

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