Monday, September 28, 2009

Redefining Autism: Should the Autism "Spectrum" Concept be Abandoned?

Should the concept of an autism "spectrum" of disorders be abandoned?

The DSM III originally included strict criteria for Kanner's infantile autism. These strict criteria were relaxed in the DSM III-R which "broadened the concept of autism to include children who, although socially impaired, are not pervasively unresponsive to others(1)". Another huge expansion took place with the DSM IV inclusion of Asperger Disorder in the Pervasive Development Disorders category: "Asperger Disorder is characterized by the same types of social impairments seen in autism plus the development of very bizarre intense interests such as bus timetables, insects, meteorology, cartography, etc. It is distinguished from autism by the presence of normal cognitive development and the absence of clinically significant language delay. In other words, children with Asperger Disorder have normal IQ and usually are speaking in phrases by three years of age.(2)"

The PDD's have in common usage become referred to as Autism Spectrum Disorders and from there it has become common to refer to all forms of PDD's as "Autism". The expansion of the autism "spectrum" has been cited each time an increase in rates of autism diagnoses is reported. When my son was initially diagnosed in 1998 the figure of 1 in 500 persons having "autism" was commonly cited, then 1 in 250, 1 in 166, then 1 in 150 and soon the CDC is expected to fall in line with the UK figure of 1 in 100. Each time the estimate changes the expansion of the criteria for defining "autism" is trotted out to argue against the existence of a real increase in autism.

The expansion of the diagnostic criteria of "autism" disorders have become a useful tool for public health officials who wish to maintain the position that autism is entirely genetic, that there are no environmental causes and especially that autism can not be triggered by vaccines. It helps in justifying the enormous disparity in funding genetic autism research compared to environmental autism research. In 1999 Teresa Binstock reported the "it's gotta be genetic" paradigm of autism research funding. Ten years later Irva Hertz-Picciotto states that the discrepancy is still between 10 or 20 to 1 in favor of genetic over environmental autism research funding. The expanded definition explanation has been used, used again, and again in justifying the argument that there is no real increase in autism increase, that autism is entirely genetic.

The expanded definition of autism to include High Functioning Autism cases and Asperger Disorder creates confusion in the public mind over what constitutes autism and leads to conflict amongst persons affected by "autism". To many members of the public an autistic person is someone like Michelle Dawson, a former Canada Post postal worker who excelled in a very complex work environment, went on to become a researcher, appear before the highest court in Canada, before Human Rights Tribunals and in countless media interviews. They do not see the autistic person who can not speak OR communicate with assistive technology. The public does not see the persons with Autistic Disorder living their lives in institutional care.

Persons with Asperger and HFA often react to what they call negative depictions of autism which they no longer consider to be a medical disorder, equating autism with left handedness or homosexuality as differences not disorders. The recent anger amongst persons with HFA and Asperger Disorder over the "I Am Autism" video is directed at the depiction of some of the harsh realities that often accompany Autistic Disorder. These people do not want to be associated with intellectual deficits, serious behavioral issues or serious family or societal expense. It hurts and offends some with HFA and Aspergers to be compared to people with severe Autistic Disorder, people like my son.

The "spectrum" concept that helps create confusion also helps create some confusion in autism research. Researcher Dr. Laurent Mottron works almost exclusively with HFA/Asperger subjects and his research often been aimed at demonstrating the innate abilities of persons with HFA/Asperger Disorder. Historically Dr. Mottron was conscientious about pointing out that his subjects were persons with HFA/Asperger Disorder as opposed to persons with Low Functioning severe Autistic Disorder. Some recent studies have not made that distinction clear and his studies are also interpreted by many as applying to "autism" generally. It is difficult to compare autism studies or data over extended periods of time because of the different ways in which autism is referred to in the research literature with some making clear distinctions between low functioning Autistic Disorder and those with HFA or Aspergers while others simply refer to Autism.

One of the most bizarre consequences of the expanded definition of autism in the DSM-III R and DSM-IV is the attempt by some persons with Asperger Disorder to extinguish the right and responsibility of parents to speak on behalf of their autistic children or to seek treatment and cure for their children. The "Autism" Self Advocacy Network is led by Ari Ne'eman a very high functioning person with Asperger Disorder whose disorder would not have been included in the "autism" spectrum in the DSM-III or the DSM-III-R.

Why Mr. Ne'eman and his followers are not content to call themselves the Asperger Self Advocacy Network is not clear. Why this very high functioning person with Asperger Disorder feels that it is legitimate for him to speak on behalf of all persons with Autism Disorders of any type and declare that they do not want to be cured is not clear. Why he, and his followers, feel it necessary to lobby against any negative depiction of autism is not clear. Why he, and his followers, feel that they have the right to dictate to parents that they should not seek to treat or cure their own children of a severe neurological disorder is not clear.

What is clear is that the Pervasive Development Disorder category of the DSM has morphed into the Autism Spectrum and from there to "autism" and this has not been helpful.

Maybe it is time to abandon the Autism "Spectrum" and establish two separate categories with Autistic Disorder comprising classic autism while HFA and Aspergers Disorder are placed together in one category .... Aspergers Disorder.

Or perhaps a better solution to the Autism Spectrum confusion would be to abandon the spectrum concept altogether by removing HFA and Asperger Disorder from the DSM leaving only Autistic Disorder as a category for those with severe or low functioning autism. Many persons with HFA and Aspergers argue that they do not have a medical disorder at all. Maybe it is time to acknowledge their arguments, remove Asperger Disorder from the DSM, and go back to the DSM III criteria for Infantile Autism or Autistic Disorder.

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Unknown said...

Excellent and important post! I think the main problem is the fact that the diagnosis of autism is given by studying the behavior, even if it is a neurobiological disorder of development. We would have to know with certainty what causes autism, so that we can also learn about the ways how to improve it. Within the autism should perhaps be a number of different diagnoses and different approaches to treatment. Currently, there are a number of different approaches and as a teacher I try to always find the one that best supports the development of my students and their integration to society.

Claire said...

Excuse my awkwardness with the following words...autism is a medically diagnosable condition. In the HFA group, is has become a popular clique...My observations as a person who is not directly involved with an autistic child reveal an increasing public perception of autism as nothing more than a little glitch that everyone else has to get over (and many, many parents buy into this). I see it in the papers all the time, I see it at school in the way administrators deal with "educating" the student population. One child with Asperger's recently wrote a play about autism...not about Asperger's. What I am trying to say is that, IMHO, there needs to be a clearer distinction and that indeed, maybe, it would serve those most affected by autism to have the HFA removed from the "spectrum". It would certainly take the wind out of the sails of those attempting to hijack the diagnosis for personal gain and attention getting.

farmwifetwo said...

Those adults and parents of children with Asperger's and NLD should not be claiming to be "autistic".

Yes, my eldest son's dx still reads "A mild form of ASD" but only a fool gets rid of the dx when you still require the services. In today's world, school boards are ignoring all other dx's. I'm not above using what I've got to get what I need for my son. Never claimed sainthood. Also, I'd lose the services WILLINGLY if it protected his younger bro and his services. All I want is the OT and the Fusion.

Asperger's is NOT autism. I cannot figure out why they keep misrepresenting themselves that way. Asperger's is ONE OF A SPECTRUM of disorders with similar criteria. Do they have no idea the damage they are doing to those with true Autistic Disorder like my youngest and your son.

I can just see it backfire on them one day when the gov't of the day says "well if it's a difference and not a disability I guess you don't need the services".

Lays head on desk in disgust.

Astrid said...

1. Maybe the reason the public isn't seeing institutionalized autistics, is that their families and staff hide them behind institution walls.
2. I can't speak for other autistics, but I for one don't mind being compared to "low-functioning" autistics. In fact, I take offence when stereotypically excluded fromt he autism community based on some arbitrary characteristic like the ability to write coherently ont he Internet.
3. Again, I can't speak for others, but I am not offended if someone points out my behavior problems and the impact they have or have had. Neither have I ever said that harmful behaviors should not be treated. What I do say is tha tnon-harmful behaviors should not be fixed and that there are positive, supportive interventions for behavior problems, that allow the person to remain who they are and teach them alternatives to aggression/self-injury without claiming that their experience of the world is somehow flawed.

Astrid said...

1. I don't know where you got it that the general public views autism as someone who is just a little weird but otherwise functioning fine (if that was what you meant with your description of Michelle Dawson, notwithstanding her actual situation). I do see that stereotype with the Asperger's label, but am not sure whether it's the Asperger's community who invented this ("little professor/geek syndrome") or the media. I vigorously disagree witht hsi stereotype as describing the whole autism spectrum (my own representation of ASD doesn't meet this stereotype at all), but again I've never seen it occur like that.
2. Maybe the reason the public isn't seeing institutionalized autistics (except for me, but I guess there is a reason I don't count) is that their families and staff are hiding them behind institution walls.
3. I can't speak for other autistics, but I for one don't mind being compared to "low-functioning" autistics. In fact, I take more offence if I'm excluded from the autismc ommunity based on something arbitrary like the ability to write coherently on the Internet.
4. Again I can't speak for anyone else, but I don't take offence if someone points out my behavior problems and the impact they have or have had. I am also not saying that harmful behaviors should n to be treated. However, I do say that non-harmful behaviors that go with autism should be accepted, and that for the harmful behaviors, there are positive, supportive interventions that won't devalue the person's autistic experiences, but teach them alternative skills of dealing with them other than aggression/self-injury.
5. I hav enever said that there aren't different representations of autism, and different levels of IQ, communicative skills, presence of behavior problems, etc. If you've seen one autistic, you've seen one autistic, as the saying goes. Point me out where any neurodiversity activist ever actually said that every autistic is the same and we're all top achievers, please, and I'll go over to their blog/website and tell them they're promoting stereotypes.

Astrid said...

@ Farmwifetwo: I have never actually come across an Aspie suggesting that all autistics are not disabled and just different and don't need services. I admit to having seen Aspies (on Asperger-centric forums, where they don't claim to speak for the whole autism spectrum) saying that they are just different, not disabled. I am fine if they just speak for themselves, but I would be on your side if they went along to tell the world that everyone with an AS diagnosis doesn't need services because they are only different, not disabled. I happen to have an AS diagnosis (merely because I spoke at an early age, I am not "high-functioning" in some other respects), but I never said this isn't a disability, let alone that I don't need services. However, "services" is not the same as "cure", and what most autistic self-advocates want are supportive services that help us live with our autism in an NT world, rather than turning us into (pretend-)NTs through a "cure".

Anonymous said...

I have a child that has an HFA label (verbal, in an integrated classroom, age-appropriate self-care skills), and I would be the first to protest removing the "autism" label because he needs the services and support to be as "functional" as he is, and also to reach the potential that I know he has. I'm not sure why you want to prevent child like my son from getting help. It seems mean and petty to say "well yes, your child has some issues, and will probably never have any friends because he can't/won't communicate with his peers, and he'll never succeed in school, even though he's pretty bright, because he can't focus, and so no, he'll never be able to live independently because he won't be able to function in any kind of workplace environment, but he isn't "autistic enough" to qualify for any kind of services. Hmmm, actually, that sounds exactly like what we're hearing right now. Yep, mean and petty. Not trying to hijack anything here, just trying to help my son get the help he needs.

Unknown said...

Anonymous 7:59 can you tell me in my post where I said that your HFA son shouldn't receive services? Is there magic in the word Autism as opposed to the word Aspergers?

My son had no significant services available for him just because he was autistic. I had to fight for services for my severely autistic son including lobbying, with other parents, to get preschool autism support workers and school aides autism trained at a credible University program which we had to lobby to get established.

I wish your son the very best and I hope he gets the services he needs.

But I object to those with HFA and Aspergers who claim that they speak for my severely autistic son and who protest every time someone speaks honestly about the real challenges of autism and suppress discussion of those challenges.

Anonymous said...

I hear you! My son had moderate-mild autism, but without his ABA at such a young age of 1--he would have a different degree of autism. I guess what I am saying is that I do believe with all my heart that anyone anywhere on the "spectrum" should have some kind of diagnosis, and have whatever therapy they can get asap, and whatever that diagnosis is, they should go full force with help. I would take a dx of aspergers just as seriously as a dx of severe autism. I know the results are not the same, but they both typically have a long road ahead of lots of help. I guess it's different too when a child gets dx at a young age, vs. a teenager that gets a dx. This isn't to minimize the difference betweeen being having severe autism or mild autism. We both agree, there's a huge difference, and their terms need to be redefined! I'm super pro dx, because without the dx, my son would be non-verbal (he can say any word now), stimming every second of the day, etc... We had to beg for a dx so young, but without it, he wouldn't have been able to grow emotionally or cognitively--or very little.

Anonymous said...

Harold, you did not say that my son should not get services, but Claire (post #2) did, at least that's how I interpreted her desire to remove HFA from the "spectrum". I say this because, if the diagnosis is removed, so is the justification to receive any kind of aid. We are already struggling with this- we have a young child who was placed on a waiting list to receive publicly-funded IBI therapy 2 years ago. Over and over again you hear how important early intervention is, but it seems like what we have achieved is early identification- the intervention part has to wait. We're fortunate enough that we're able to afford private therapy, and our son has made amazing progress, the kind which we never imagined that he could possibly make when he was a non-verbal, non-toilet-trained 3-yr-old, and now we're hearing that he's "not autistic" enough to get funding (even though he continues to benefit from therapy). Don't get me wrong, I am deliriously happy that he's done as well as he has But without that therapy, where would he be? What if we couldn't have afforded it? What about those who can't?

So please, to Claire and others like her, don't deny the existence of my son's disability, especially as you are speaking as one who (in your own words) "not directly involved with an autistic child", and who therefore has no right at all to make judgements about who is "on" or "off" the spectrum. To Harold, I'm sorry that you interpreted my post to mean that I was making any kind of judgement about you, your son or the services that he is entitled to. I am not out there raving about the wonders of autism, and how it's just "a different way of looking at things." I am not attempting to deny the struggles that your son, and others like him face every day, and yes, I am selfish enough to be grateful that our son is not as severely impacted by this disease as others are. I have followed your blog, and am well aware of the excellent job you have done advocating for your child. I wish him and you well, and will continue to enjoy your perspective on things.

Astrid said...

@ Roger: again, please tell me where a neurodiversity activist said, in their protest of the autism speaks video or anywhere else, that autistics don't need services or don't have difficulties. You are advocating that people like me, and many other autistics who happen to be verbal and of normal intelligence, be robbed off their services that we genuinely need, by claiming that the criteria for ASD should be narrowed to require intellectual impairment, no speech and dyspraxia. (By the way, even if in DSM-V Asperger's will be removed and everything will be lumped together as ASD, there will still be mild/moderate/severe classifiers, so it isn't like everyone will be put together in the same category regardless of severity of impairments.) You claim that neurodiversity inspired you to make these allegations, so would you please tell me who exactly was inspring you, so that I can go over to their blog and see if I can educate them that some autistics do actually need services? Again, saying "autism shouldn't be cured" is not the same as "autistics don't need services", so if that was what got you inspired to push me and others off the autism spectrum and deprive us of your services, you are misinterpreting what ND says.

Claire said...

To Anonymous... thanks for your remark on my comment. I know my presence here is touchy and Harold has generously always allowed me to comment. I am also awkward with my remarks at times...trying not to offend. If I might's not that I don't thing HFA should not get services...I perceive, from an outsider's view on autism (with an insider's view on disability, certainly) that there are those among the adult HFA crowd that have highjacked the diagnosis "autism" and turned it into a cozy clique that likes to adopt geniuses from the far past as members of their club (to name one small sin). This does NOT serve anyone with autism...even not your child if s/he is high functioning...because they make it less of a problem than it is...those HFA's don't want you to have help for your kid...just a diagnosis that will, inevitably, lead to him/her becoming naturally genius. Do you see what I mean? HFA might be better dealt with in other ways but at least, IMHO, there has to be a better public perception of autism and it's darker realities in order for John Q. Public...that creates funding for assistance...stand up and take notice. The current trend toward making disability of every sort a beautiful and happy experience full of blessings and joy is killing all of us who struggle daily with its darker realities, the lack of help, of funding, of early intervention. I hope that was least it was long-winded!

john said...

no offense Harold, but this post makes me sick. Not what you wrote, but that autism speaks removed the video. I am actually furious.

I do have a few questions for astrid though....who dressed you this morning? did you pick out your own clothes? who buttoned and zipped your pants? Did you pour yourself some milk this morning, and if you did, did half the gallon go on the floor? what did you stare at today? did you flap your hands around for hours in your house? How hard did you hit yourself today today?

If you answered no to these questions, then I dont get why you say your offended because you can write coherently on a Its like comparing apples and oranges. Thats what people get offended by.

I guess when I see these things written, its clear to me even more that these anti-cure people have no clue what it's like living with an autistic child.

But I digress...I cant believe that autism speaks removed the video. I just might have to stop reading over there. I don't participate in forums anymore (due to they make me bonkers) but I am down right angry over this.

someone has got to explain this better to me. everyone has a choice, why not find a cure, and if people do not want to be cured, then fine. what is the big deal, why do some people feel they need to hurt so many children who cannot function in the world, never alone even right a full sentence on the computer, dictate that my son cannot or should not be helped. I just don't get these people.

Astrid said...

@ Claire: We agree ont his one. I am annoyed by Einsteinaise illogic. Besides the fact that there is no proof either way about Einstein's autism (and the other geniuses from the past), even if he were autistic, he lived in a very different historical period, so it's no wonder he coped better. And there is absolutely no reasont o assume someone is autistic just because they have a genius IQ and is a little socially awkward; giftedness comes with social differences naturally. Also, those neurelitists (no clue if it's the correct word, but it's my word for those) who assert that autism is genius, overlook the disabilities many even "high-functioning"/"mild" autistics have. However, again, this is a small minority, and I have never seen anyone who actually claimed that autism by definition is like that; all the neurelitists I came across, in fact, are very clear that they are Aspies and distance themselves from classic/"low-functioning" autism. I think they cause more harm to those with genuine disabilities who happen to have an AS/HFA diagnosis than they do to those with an LFA label.

@ John: I meet some of your severity criteria, and don't meet others. How old is your child? It will give me a point of comparison to how I functioned at his/her age. But if you don't want to say, don't bother, since I never said that your child shouldn't be given physical therapy to improve his motor skills, occupational therapy to improve his self-care skills, or that there shouldnt'be devloped an intervention plan for his self-injury. I would have a problem if you subjected yoru child to clothes-buttoning training 40 hours a week because life is more than buttoning clothes (not saying you do that, but suppose you did), but I don't have a principal objection agains this issue being addressed. And again, I am all for interventions for overcoming self-injury; I have a problem with some specific therapy methods, but I don't have a problem with it being addressed altogether. However, saying that some parts of autism are harmful or severely impairing (and so are some parts of my own autism, despite the fact that you like to discredit me for not being autistic enough), and therefore should be treated or worked around, doesn't mean autism as a whole is bad. I am not a person who says all harmful/impairing symptoms are "comorbid conditions", but I am also not saying that because autism has some impairing/harmful features, means the whole thing is bad and the experience should be "cured".