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"You're not really autistic!"

On another online site, a parent of a "recovering" child with autism pointedly claimed that those of us who are diagnosed with autism spectrum disorders as adults are somehow not genuine. Among the comments posted to Left Brain/Right Brain (http://leftbrainrightbrain.co.uk/):
How does it just dawn on somebody they are on the spectrum??? How do others that are older decide they are on the spectrum??? Schools won't even take real diagnostics so none of the self made Adult Asperger's have any real claim to anything but a way to put down what helped my child to not be on the list of who you're searching for.
The thread, both on LB/RB and as carried on elsewhere, is appalling. A parent actually had the gall to message me that I was not actually disabled, but was instead hiding behind the cover of autism to shill for the government and big medicine. This person argues that anyone speaking, traveling, blogging, and conducting research can't possibly have a "serious" neurological disability.

Stifling my outrage as best I can: tell my mother, who sat with me when I was in intensive care as a toddler that I am not disabled. Tell that to the mother who did physical therapy exercises, moving my limbs to reduce the effects neurological damage. Tell that to the mother who became a teacher's aide in special education. And tell that to my wife, who has stood by me through more than any human should, from medical emergencies to "treatments" gone bad. My wife was treated poorly by me, and I do blame medications and lousy diagnostics. We both had some miserable years due my disabilities. That's one reason I don't like medications or psychologists who see what they want and give horrid advice (as opposed to neurologically-trained psychiatrists).

I'm not hiding behind anything when I speak on issues of education, support, and treatment. I'm not selling any therapies, no promises of cures, no assurances that your child will or will not be a successful adult.

What people like me do is speak out for compassion and understanding of those adults now being diagnosed with neurological / learning disabilities and those children who will become adults with various diagnoses and special needs.
From the editor of Age of Autism:
Why are there stories in the news from around the U.S. on the need for services for adults with autism? What did we do with these people in the past? We would have had to provide for their needs even if they were incorrectly labeled as mentally retarded. Why don't they just go where autistic adults have always gone?
Yes, why don't those of us with neurological difference just slink away into institutions? Why don't we leave the discussion and take our "mild" disabilities with us so Generation Rescue and AoA can save the real autistics?

I am not proud to be disabled. I am humbled by the fact my friends and family, especially my wife and my mother, have made my life possible.

Why are there adults now "suddenly" appearing? Because health care improves, diagnostic instruments change, and even definitions evolve. A century ago we could not test for some forms of cancer. That does not mean those cancers did not kill people -- it means we misdiagnosed the causes of deaths. Just because people once died of "hysteria" and now are properly diagnosed with seizure disorders doesn't mean those seizures magically appeared one day.

There was no diagnosis of "autism" when I was a child. There was no diagnosis of "high-fucntioning" or "Asperger's Syndrome" until the later 1980s and early 1990s, depending on the specific clinician and how reliant he or she was on the DSM criteria vs. other emerging standards for ASD diagnoses.

Yes, I was diagnosed as likely "retarded" and later as suffering "brain trauma" by general physicians, neurologists, and various specialists. The diagnoses changed. I did not go shopping for the label of "autism" and still don't always accept it. It was much easier to think I was "ADD/ADHD" and eccentric.
No, I am not using autism as a cover to attack the views of some people. I do think there are charlatans and snake oil salesmen out there who should be exposed for preying on parents and individuals with special needs, but I don't accuse the parents of lying or having false motives.

There's a lot I want to say, but it is best to realize people are angry, frustrated, and desperate to find someone or something to blame for the challenges they and their children might face. I can't ease that anger. What I can do is ask that people treat adults with disabilities grouped as ASDs with more respect. We don't deserve accusations of dishonesty any more than those concerned parents do.

I'll keep calling the charlatans what they are, because I honestly don't think they are self-deluded. I think they are predators on families. If that means I'm "not really autistic" to some people, so be it.

I might be outraged, but it is at the people and organizations feeding the conspiracy theories and telling the public that people like me are frauds. I simply cannot be angry at the parents -- only saddened that they feel it is okay to lash out at self-advocates.

Comments

  1. Part of the problem has been the rather ruthless maintenance of Group Think by a small group of influential individuals, that has circumscribed parts of the debate surrounding Autism, to such an extent that the true difficulties faced by people like myself have not had a fair hearing in cyberspace.

    It is difficult to the point of impossible to maintain a 'Neurodiverse' stance on Autism while acknowledging the very real, and sometimes fatal consequences of High Functioning Autism.

    It is no wonder we are treated with such contempt by the Martyrdom Mummies.

    I will sign of with a brief extract from the DSM IV-TR:

    Asperger's Disorder 299.8

    The essential features of Asperger’s Disorder are severe and sustained impairment in social interaction (Criterion A) and the development of restricted, repetitive patterns of behavior, interests, and activities (Criterion B). The disturbance must cause clinically significant impairment in social, occupational, or other important areas of functioning.

    A little anxious at social events and a comprehensive Star Trek collection is not a pathology, although it may well be Autism.

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  2. C.S.

    I was diagnosed at the age of 37 with Asperger's Syndrome. What has happened to you is not surprising to me. However, what this parent may be telling you, in a very unsophisticated way is that you do not have autistic disorder, which you don't and neither do I. There is a very real difference between AS and AD and the DSM-IV hasn't helped in this clarification.

    I wholeheartedly believe exactly as Socrates quoted that it has to rise to a clinically significant impairment in social, occupational and other areas of important functioning. The way this "clinically" significant impairment often manifests itself, from my experience in a group of AS adults is that they are more often unemployed, dependent on others for housing, food, and social interaction. In addition, many are self medicating (alcohol, illegal drugs etc.) and many others are being heavily medicated through their psychiatrists and or family doctors.

    As an AS person with an AD child, I can tell you that what most of us face, while extremely disabling in almost all facets of life, does not compare to the AD population. This doesn't mean that are disabilities are not real and in some circumstances crippling. But, we do, as a group, have outlets to let others know of our disability and that in itself helps many of us to function to some extent. You and I would be considered shiny aspies by most parents with AD children.

    You shouldn't take what this person says personally because you don't have a child with AD and thus do not understand the global arrestment of development that occurs in AD. You may have some "academic" understanding of the issues that face those with AD, but its entirely meaningless until you become responsible for the life of someone with AD.

    Now, I want to clarify something and state something unequivocably so I am not misunderstood. AS is a REAL disability and often the outcomes are no better than those with AD. However, personal satisfaction with one's life can be measured in AS because those with AS are verbal. Imagine what it would be like to be non-verbal, completely non-verbal and no one in the world understands "your language". That is AD.

    In my opinion, what has created this online hostility is those of us who have very real AS, diagnosed AS, have been drowned out by those who think they have AS or who identify with AS but don't really have it. In addition, those who fake AD have caused a very real and a very hostile environment for those with real AS and higher functioning forms of autism. Many parents have been deceived and they are angry with that. In addition, many of the institutions of autistic self advocacy have contributed to this hostile environment that those of us with real disabilities and AS have to endure. We ask very little of our own community in ways of proof and we grab onto anyone with the ability to call themselves autistic and produce elegant, genius level prose. We know in our hearts, at least many of us, that this is not right, but because we have such low self esteem and we are constantly under a society that browbeats disability, we quietly accept the compromise. It is the compromise that really does us all harm. The compromise is that we trade in our "blink", our gut, that says this isn't real in favor of what is empowering, even if this a slippery moment of power knowing full well that this isn't real.

    I'm being vague on purpose of course because I have no other choice, unfortunately.

    ReplyDelete
  3. The hostility is not the fault of parents -- it is the fault of two radical groups with agendas I question. I dislike much of the self-advocacy rhetoric and I also believe there are charlatans preying on families. Together, these groups present an "either/or" binary that is simplistic and disingenuous.

    What has caused some debates in the past is whether or not I was "recovered" in some way. The blunt answer is: I have no clue. Honestly, I have no idea, but I definitely believe in early interventions and educational supports. I was never on a special diet, never "treated" with homeopathic cures, and yet it is fair to say I did "improve" through most of my childhood and into my teen years.

    Sometimes when I speak the questions focus on vaccination, diet, and treatments. All I can offer is that none of those apply to me. This leads to the "You're not autistic!" claim, since I manage some things well enough today -- though I am far from independent.

    As I have written, my symptoms remain severe enough that I understand the desire to cure those. What is frustrating is that people dismiss the symptoms as psychological not neurological. Technically, I suppose it doesn't matter, but I would like to have more control over my body.

    Side Note: No clinician has ever offered an AS diagnosis and in fact two separate evals within the last four years here in Minnesota (one at the Univ., one private clinic) used "autism" without qualifiers. My formal diagnosis is elements of classic autism, with traits of high-functioning autism. This was preceded by the "brain trauma" diagnosis. I was never considered merely different; I received a fair amount of one-on-one supports even during a time when "autism" was not the diagnosis (1970s).

    I suppose this could lead to the "fake" autism charge in some minds. That's certainly problematic, but not much I can do about that. I was fine with the the "brain trauma" diagnosis and still wonder if that's not more accurate in some ways. I'm more than open to the notion my "autism" is not the same as Kanner's/classic autism or even Asperger's Syndrome.

    Being willing to say, "I don't know" and "I'm not certain" confuses people, but I'm honest. I definitely suffered severe birth trauma, which I always disclose when asked -- it could explain everything about me, and only me.

    The DSM-V is going to make things even messier, I fear.

    ReplyDelete
  4. C.S., I find much of what you write thoughtful and fair and the way you present it is devoid most of the time of exclusionary phrases. I agree with much of what you wrote here above.

    I think the DSM-V is actually going to have the opposite effect than most people think it is, if they think it will blur the lines between AS-AD. At some point, I'll have my own blog and I'll elaborate on my thoughts about this.

    I do want to commend you and your voice because it is rational and devoid of dogma, all of us in the autism/autistic community could benefit from more rational discussion. Its good for parents and its good for autistic people that have the capability to advocate and or read and write on the internet to read rational discussions on autism and reject the binary, as you put it, presentations.

    ReplyDelete
  5. I try to remind myself that my parents, my wife, my teachers, the doctors, and me each have unique perspectives. I cannot understand each of those, but I can respect that my needs and complications are difficult not only for me, but they might even have a greater affect on others at times.

    I cannot imagine how the first years of my life affected my parents, even though my mother has written to me, answering some questions. My wife is very reserved, but I know there was some truly miserable years. Things are still tough at times, but much better than they were.

    It is unfortunate that there are groups and organizations that would exploit the emotions -- especially fear and hope in equal parts. When I feel excluded, I want to demand diversity at any cost to others. When I feel physically ill or in pain, I want a cure for those symptoms.

    The reality is that most people feel like outsiders at times, even in our much improved culture. The other reality is that human bodies feel pain, suffer injury, and fail even athletes over time. No one escapes decline, but some of us have a head start.

    Keeping perspective hopefully makes my words useful to people from many situations. I'm sure I forget and center on myself too often, but I try as best I can to reach out and listen to polite and reasoned views.

    Thank you for the kind words.

    ReplyDelete
  6. I love your blog and I share your outrage, like all shallow narrow thinking, exposure, light and time eventually defeat it and blogs like yours helps.

    ReplyDelete
  7. *Standing (ok, sitting) and cheering*

    It is hard to believe that parents of young children can be so misinformed and self centered. I feel your outrage and share it as my son gets older and needs less helps.

    ReplyDelete
  8. I have the same problem, but with schizophrenia. If you don't fit people's comfortable pre-conceived ideas, you're a fake. In my case it's being able to control my schizophrenia without medication (if you were REALLY schizophrenic, you'd be on meds, therefore you're not schizophrenic), but the same principle applies, and it is frustrating. I empathise with you.

    ReplyDelete
  9. Mom of an annoyingly successful AspieJuly 26, 2010 at 6:04 PM

    Caghs - and then there's people who are not really blind because they can make out fuzzy dark shapes, people who are not really crippled because they can crawl, and people who are only a little bit pregnant.

    I think somebody needs to look up the word spectrum in the dictionary.

    ReplyDelete
  10. Just a comment to Aspiemom and to mom of annoyingly successful Aspie,

    I think both sides here fail to understand what these parents may be reacting to. I'm a father with Asperger's raising a son with autistic disorder so I think I'm in a unique position to speak. From my personal experience, I can tell you the two have little in common in presentation and hardship. In autistic disorder, there is a lot of self stimulatory behavior that interferes with learning and the children are stripped of language, even rudimentary language and this can cause such psycho-trauma for an individual. Imagine that you can't say such simple things that us as people with AS take for granted such as "it hurts here", "no", "yes", "I like this please let's do this again", or "I love that", "I like donuts", "I like cookies", "the teacher was mean to me and smacked me".

    You see, as hard as AS is, and it is no doubt, we can express our frustration which is a great minimizer in dealing with pain and rejection. When you have no language, you have no opportunity to discuss and dialogue like we are doing right here. AS people speaking to NT people. Its great. Now take away the ability to communicate, and you can see what living like that decade to decade can cause in psycho-trauma.

    I have no idea what these parents were saying to CS, but I can assure you these are the type of things that run through their mind. Both sides are right, but remember, the harder road to travel is AD and I think CS would agree with this.

    ReplyDelete
  11. I don't consider myself qualified to comment on the experiences of individuals with AS or PDD-NOS diagnoses. Some find it too tempting to dismiss AS experiences as "minor" -- when I'm not sure what the experiences are.

    My physical impairments were more challenging for my family, both financially and emotionally according to what my parents have stated.

    I do find, and this is a generalization, that students with AS seem to want to belong, seem to want social connections. Some seem to be emotionally affected by this rather deeply. I understand many with AS experience depression and anxiety.

    Some of the comments were intriguing. I don't always relate well to people I meet with AS diagnoses. They seem more self-aware, for lack of a better term.

    I do like donuts. A lot.

    ReplyDelete
  12. This is more a comment on the comments than on the original post:

    It is unfortunate that most people remain under the impression that one must be non-verbal to be diagnosed with autistic disorder. Lack of or delayed speech is only one out of many criteria for AD. In the section in which this criterion is found, one needs only 1 criterion out of 4. Some may have 3 out of the 4, with the only criterion in the section that is not met being lack of or delayed speech. If delay or lack of speech was a criterion that MUST be met for diagnosis, the criterion immediately following would not begin with the words, "In individuals with adequate speech..."

    If there is going to be intelligent discussion about AS, AD, and how similar or different they are, or whether they are the same disorder or different disorders, it is important to keep in mind what actually constitutes each.

    ReplyDelete

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