No, I'm not "Severely" Disabled. And?

When someone tells me, online or actually to my face (which has happened) that I am not disabled, much less autistic, I want to rap him or her on the noggin with my cane. Too subtle? Oh, wait, that fits in with the angry activist image, which I disavow. Anyway, when someone says I'm too normal to be abnormal or something like that, it's a good time to walk away and go listen to classical music.

This entire debate gets frustrating. The parents of "classic" autistic children meeting me today cannot imagine that my parents endured the same emotional (and financial) stresses as their families. They don't realize I'm the result of 40+ years of interventions that continue to this day.

At birth, I was labeled mentally retarded and was non-vocal (not even crying). For months I didn't crawl or move about. I have engaged in, and still do under stress, what are perceived as self-injurious behaviors. I don't intend to hurt myself, but I have bruised my legs pounding my fists against them, for example.

I've been called a "shining Aspie" and I still don't get it. I don't have Asperger's and was never diagnosed with AS. I view that label as something of an attempt to "downplay" my experiences or my value as a researcher with autism.

No, not every child can make the progress I have. I think that is an essential, honest admission. Some parents, in fact most with severely impaired children (and I don't have a better way to express that, sorry) will not be able to see their sons or daughters off to college. They might not see their children move out and live either alone or with a companion. They worry, as mine still do, that there won't be a safety net for their children as adults.

To me, that's the line. Severe autism is when there is little to no realistic opportunity for self or companion-assisted independence. (I know I'm not independent, financially or otherwise, but I have a companion who helps me succeed apart from my parents. My wife and mother both joke that I'm as independent as most men. Maybe that's true. I'd have to ask my father.)

Severe is when the person forgets medical appointments, basic hygiene, and daily routines. It is when there must be someone externally helping with daily tasks.

Mild or high-functioning? I believe that is where I am. I might never be "normal" but I know and admit that I am fortunate to be able to write and communicate with some skill. I know I am rarely unable to take action for myself, even if that action is asking for assistance.

I understand the parents of "low-functioning" children are sick of hearing from "Aspies" and the "neuro-diversity" movement. They want people to remember their children, too.

Of course, we do remember their children. We know many, far too many, children with severe autism will not have great opportunities. We know care and supports are lacking. But don't take it out on potential allies! I agree with you that it is difficult to raise a child with special needs.

My mother and father dealt with more than I will ever appreciate. I know it was hard, because I can see and hear that even today when my parents remember the medical appointments, the physical therapy, the teacher conferences.

People "like me" are not trying to change what autism is. We are not trying to claim autism for ourselves, as if autism can be "owned" by some group of activists.

Your child deserves as much as we can provide as a society, maybe more. Don't think for one moment I any other "high-functioning" person with "mild" impairments doesn't want much better for your child than we had in the not-so-distant past. We do want better for everyone.

There's a lot of rage out there, sometimes. That's a shame.

Comments

  1. Correct me if I am wrong but you appear to be indicating that the "rage out there,sometimes" is emanating from parents of children with severe autism. I am parent of a child with severe autism, now 15. find your comment interesting and balanced for the most part.

    I don't agree though that Neurodiveristy advocates generally show any understanding or awareness of the challenges facing severely autistic children or the struggle that parents face in seeking effective interventions for their autistic children.

    I have been an advocate in NB, Canada for autism services for over a decade. We have enjoyed many successes but it was not easy and we faced many obstacles. Neurodiversity advocates here in NB and across Canada and the US have very often opposed efforts to obtain interventions for autistic children. Michelle Dawson, a high functioning autistic person intervened in the Supreme Court of Canada decision in Auton to oppose parents seeking ABA intervention for their own children.

    Prominent Neurodiversity advocates from Jim Sinclair to Amanda Baggs to Ari Ne'eman have repeatedly declared on behalf of all people with autism that "WE" don't want to be cured". In making these bold statements they do not distinguish between themselves and the severely autistic who can't write books, demonstrate in public, produce videos, appear before senior political committees and legal tribunals or appear in a wide range of high profile media from CNN to the New Yorker, to CBC here in Canada.

    I do appreciate though your effort to strike a more balanced position in respect of high functioning persons with autism.

    On a final note the rage, I would just call it intensity, does not all emanate from parents.

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    1. Hate to say it, Mr. Doherty, but as a person who was confused for autistic due to memory loss and turned out to be otherwise, I'm not entirely sure that your blog isn't frustrating for the Autistics who can get online. Please note that I didn't say anything about what functioning level they've reached or what their IQ is. I have read your blog, and sometimes gotten incredibly frustrated with the back and forth on your site. I'm not as frustrated right now, because I'm aware that very few people are capable of defusing someone else's anger at the same time as people diffuse their own. I'm thinking maybe you're too defensive, and they tend to respond to your defensiveness in a state of either defence or offence, which is how bile wars get started, but I've mis-remembered before. Basically, if you give off what others perceive as other-directed intensity, they will respond with the same thing, only more of it. This is true... on the spectrum, off the spectrum, and across the board for nearly all humanity. The exception is people who know how to emotionally de-escalate violent emotions, and that's only exceptional if the person they're talking to LETS them. It requires implicit trust for that sort of thing. So, humanity as a whole can easily distress each other, many times without intending to do that. It's much easier to do, if one perceives the other as the enemy-- another incredibly common thing.

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  2. Since I do not know most of the people in the "ND" movement, I can only reflect on my own experiences with their virtual communities. They are, yes, often as "angry" and "intense" as the most radicalized parents I've encountered. Radicalism is seldom effective in public discourse; the parents' anger is perceived as an attack by the self-advocates. The self-advocates' anger is then seen as an attack on parents. It is a spiral, especially online, that leaves everyone feeling victimized when the better response is to pause and take several deep breaths.

    I've been criticized for not endorsing or being involved in self-advocacy groups, but those are simply not for me. I thought about getting involved, but like any organizations there are internal political issues that aren't interesting to me.

    I do not support ABA-based therapies, as I have observed them, but I support further research into better adaptions of ABA theories and practices. The science is not as settled as supporters suggest, but that science must be continued and expanded.

    Admittedly, part of my distaste for ABA methodology is based on its origins, which are disturbing. The Lovaas family and UCLA deserve a lot of criticism for creating the "UCLA Feminine Boy Project." The early years of ABA research are so upsetting I had to stop reading the original research data.

    That heritage raises questions for both the gay rights and autistic advocacy movements. I understand those questions, just as I understand when African Americans are skeptical of any CDC/NIMH research, since so many were abused in medical and mental health experiments.

    Again, I'm not rejecting ABA outright, but I do believe the research is not as solid as proponents suggest. That calls for more research -- ideally disassociated from UCLA, UC Davis, or any university associated with the Lovaas family, their business interest, or other potential conflicts of interest.

    As a researcher myself, I know someone will always cast doubt on projects, which is all the more reason to attempt to minimize the perceptions of conflict of interest.

    My position on ABA doesn't mean I don't care or don't support parents. It means I question the ABA methods I have observed during my own research projects. There is a serious need for more autism research funding to improve how we work with children. Maybe I've seen poorly trained and supervised ABA practitioners. That still calls for investing in improvements.

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  3. Of course, we do remember their children. We know many, far too many, children with severe autism will not have great opportunities. We know care and supports are lacking. But don't take it out on potential allies!

    I don't think many of the people in ND are allies for kids with severe autism. They won't even acknowledge them, arguing labels mean nothing and most I've encountered certainly won't even look at them. You can see it on your own blog in the comments just recently.

    You may feel some wrath, but you cannot possibly understand the fear and grief parents of these young adults have for their children. Until one has children themselves, they cannot possibly fully emphathize with what they are feeling.

    I think it would be helpful for you to look at how Temple Grandin handles these crowds during speaking. She is very quick to underline that her experience won't be what many people with more severe autism experience. She shows a lot of empathy for the LFA and always makes clear the distinction. Did you do that before you were confronted? There needs to be a disclaimer.

    When you have to advocate for your child because he can't speak, write, toilet and seems to be in pain all the time, you'd be pissed and afraid.
    When I write child, this could include adults because a person will always be their parent's child.

    The mainstream autistic advocate community has never, to my knowledge, in all its history sought to build bridges with these parents and this community. Their too busy giving lectures, protesting, writing screeds and giving interviews. Meanwhile, the parents are fighting for the future of their very very disabled and non functioning children.

    I think you try to give a balanced view, but you can't help but at times to lapse into the same thinking as these activist groups. Take these encounters as a learning opportunity for you. It will only make you a more knowledgeable speaker.

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  4. What offends me is telling me that I'm not disabled at all. That's just silly. I use a cane on bad days and always limp. I'm partially paralyzed on the right side. I have a base membrane dystrophy and a palsy. I was in a body brace for six years. I've even had facial surgery that was botched (wires were left in by accident, which rotted).

    I spent 2009-10 undergoing a series of painful eye surgeries because the epithelial cells detach every so often thanks to the dystrophy, leaving me unable to see. And the constant tearing (as in ripping) of the eyes really, really hurts.

    But I'm not disabled? That's the source of my frustration.

    I always speak of the most disabled, constantly when I speak in public. My mother is a one-on-one aide for severely disabled children, and my father was nurse in a field were too many of the patients, including children, die. It's hard to forget the children your parents work with die. My mother has visited the children she helps as as aide in the hospital, something not every teacher or aide does.

    To say my parents or I do not understand is just plain ignorant. I always mention what my parents did professionally -- and how my childhood was part of the choices my parents made.

    I have spent an hour talking about severe disabilities only to be berated for not understanding what it is like. That's part of my job, I realize, as a researcher. Parents will always want better and lash out at the people who cannot provide more -- for legal, budgetary, or organizational reasons. I'm always the first to admit the schools do not do what parents or teachers would ideally want. That's the reality.

    Verbally insulting me after I explain the horrible reality, that's just not helpful. But, it seems to be a norm. That anger isn't helpful -- and I don't believe I'm the best target for the anger. It does reach a point at which walking away is best.

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  5. I also think it is important to add -- I don't always understand the ND movement.

    You want to "cure" my palsy? Who the heck wouldn't want that? You want to cure my migraines? Great. I'm also all for never having a meltdown again, not having one more self-injurious hours' long fist-pounding episode, not having anxiety from colors or shapes, and several other things.

    When someone says they don't want a cure? Huh? Seriously?? You like everything about your mind and body? I sure don't. Just ask my wife how angry I get with my mind and body when it does offline for days at a time. Nothing bothers me more than days lost to being nothing but a body in bed.

    So, I'm not in the "no cure" camp. Plenty of things about me I'd be thrilled to have repaired or fixed or whatever you want to call it. Are they my "autistic" traits? Some probably are. I'd love to ride the train without the brakes causing severe physical pain when they squeal loudly.

    I'm sure saying I wouldn't mind a refund for the "gifts" of autism doesn't endear me to some activists.

    At the same time, I like some aspects of my mind. I like how I think about problems, math, music, science, etc. I've struggled with that contradiction: does having some gifts compensate for the physical pain an suffering? On good days, yes. On bad days? Not at all.

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  6. I didn't realize I was part of a movement, lol.

    I'm not autistic and neither is my husband, but I joke that many of the characteristics that attracted me to my husband where autistic characteristics. I remember seeing him sitting perfectly still and silent in a large room of people, extremely aware of what was going on around him but not interacting with it. He's a bit non-responsive in answering questions but its because he thinks before answering and the data involved is complex and takes lots of time to sort through and sometimes he never gets to the answer and I want to bonk him on the head for not just saying "I'm thinking about it" or "I don't know." (And yes I do know that other wives say the same about their husbands, but believe me its a bit different). Oh and I should add that sometimes its because of the messy way I ask the question and his literal interpretation of the question that he feels he simply cannot answer the question the way it was asked.

    And then myself, as I have learned about sensory integration problems because I have an autistic son, I recognize that I have been dealing with this all of my life and suffering because of it. School was hell and grocery stores are often. Crowds of people can be. But in dealing with people that are not like this I find that they are somewhat dead, there are things they do not know because they are able to ignore them. They are very frustrating to me.

    My son has been diagnosed as being autistic. It frustrating to me because I really do not consider it to be a disease, but it is a disability when functioning in society and in order to get the help he needs for people to understand that he has a good reason for his behavior, he needs a label.

    He has different paths and orders of learning things. He has abilities other don't and problems others don't. If you were to add chemical toxins, food allergies, etc. to the problem his disabilities would get worse. There are things that need "curing" and causes that need research and discovering when it comes to the thing we call "autism". Research needs to be done to get rid of the environmental causes involved.

    But as a genetic group, I think that autistics need a different path of education than is provided to the average population. I don't think they need to be identified in the womb and aborted. Whether they need medication -- well, I think they would need a lot less medication if they were provided a different educational route. Sometimes medication is needed to survive the society they have to live in.

    Is my son exhausting? Emotionally traumatic for me? Do I often resent how much of my time and energy he takes up and how little is left for me? Is he expensive? Do I have a burden of guilty feelings because of him? Yes to all of that.

    But I do seriously believe that a lot of my stress would be reduced and his chances of positiviely functioning in society would be increased if schools were developed with the understanding that about 1 percent of our population is very different and needs schools designed very differently. They don't need to be thought of as people that need fixing any more than any child needs to be thought of as a person that needs to be fixed until they become a functioning adult. Their educational path needs to be different and the result will be somewhat different.

    Think of functioning adulthood as a large central area on a line running East and West, with 99 percent of the population starting from the East and walking West and 1 percent starting from West being told to walk West because that is the direction everyone else walks.

    And one final thought: I've seen the "normal" population . . . and I don't consider a large portion of them to be functioning adults either.

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  7. My son started reading phonetically at age 2 with very little exposure to the concept -- it wasn't my goal to get him reading then. I don't feel other children that didn't start reading at age 2 need a cure. They need to start reading and how works best for them.

    The problem is that "autism" is a set of symptoms with a variety of causes. Its like putting all blue objects in the same set and giving them a negative label. Why they are blue and whether it is a good thing or a bad thing or neither is unique to each object. Some of the causes need curing and some of them do not. But mainly blue objects need to be treated like blue objects and not red objects (otherwise you may freeze or burn yourself when you turn on the wrong tap). But can you think of a world without blue just because blue is the color people turn when they don't get enough oxygen? What is needed is oxygen, not the absense of the color blue.

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