Tuesday, November 3, 2009

Will end of Asperger's mean end of neurodiversity?

According to an article in yesterday's new york times there is now talk of eliminating Asperger's syndrome as a diagnosis in the 2012 edition of the DSM. One of the reasons given is that the diagnosis is confounding and means different things to different people.

Asperger's syndrome being included under the rubric of autism has been a boon to two different groups of autism aficionados with whom I have been at loggerheads at various times.

The first group is the mercury militia, vaccines cause autism group of people who claim that there has been an epidemic of autism. They cite the increase in prevalence from 1-4/10,000 to the current rate of 1/150 (or even higher) that has been cited by the CDC and others sources. It is very likely that at least part of the reason for this increase has been the introduction of Asperger's syndrome into the autism lexicon. The same is true for autism speaks and the numbers that they give to generate fund raising. Without these numbers they would not be able to give the simplistic quick fix solutions of chelation and other questionable methods of treating autism. Or the claims that vaccines have caused an alleged autism epidemic. It is unlikely they would have been able to do this without Asperger's.

The second group is an ugly cult called neurodiversity, which claims that autism is not a defect or a disorder but merely a difference. Autistic people would do just fine with the right supports. These people claim to speak from personal experience. Yet it would seem that the vast majority of them have Asperger's rather than an autism spectrum disorder per se. Can they really speak for me let alone others such as John Belmonte or Dov Shestack who cannot speak and have challenges in life quite different from theirs?

University of Michigan professor Catherine Lord has been quoted in the article as saying there is no difference in the diagnostic criteria used to assess Asperger's from high functioning autism. However, my understanding of the situation is different from hers. One of the things that really differentiates high functioning autism from Asperger's is the presence or lack of a speech delay of some sort before the age of 36 months; the former would indicate autism, the latter Asperger's. Though at one time I thought of myself as being possibly Asperger's, now I don't think of myself that way because I did indeed have a speech delay. Though, by most standards, I would consider myself quite high functioning, my problems are probably more severe than most of those in the ND movement and some others who call themselves Asperger's and by extension "autistic". Nowadays autism is often diagnosed in persons before the age of 3. Asperger's is often not diagnosed until about age 8. So it would appear that though there may be some similarities it would seem that this would show that we are talking about two distinct conditions.

Unfortunately, the plan is not to say that persons with Asperger's can no longer call themselves autistic but to include all of these people under one rubric, autism. Not surprisingly, ASAN leader Ari Ne'eman is a proponent of this plan. The article quotes him as saying he does not want to look at himself as being a superior Asperger's person but someone with autism. According to the recent Newsweek magazine article that was done featuring Ne'eman, unlike myself, he did not have a speech delay before the age of 3, but was able to say the names of various dinosaurs at age 2. He was not diagnosed with any sort of an autism spectrum condition until the age of 12. Prior to age 12 his diagnosis was Attention Deficit disorder. If Ne'eman had presented with a clinical picture similar to mine before the age of 3, it is very possible that he would have been diagnosed with autism at the time.

My proposal to the authors of the DSM is to eliminate both Asperger's and PDD and just have one diagnosis of autism. One of the mandatory criterias for whether or not one could be diagnosed as autistic would be to have had a speech delay before the age of 3.

This would not only mean that Ari Ne'eman could no longer call himself "autistic", but the same would probably be able to be said for many if not most of the members of club ND. How many of these autistics actually had a speech delay at age 3? If they didn't, can they really speak for myself and say "most of us don't want to be cured". Or in general talk about how autistics feel. Would they be able to present their views before the IACC from personal experience? Would the autistic self advocacy network have to change its name? It is possible that if the DSM were changed in the manner that I wanted it to be changed this could be the death knell for the neurodiversity movement. Persons interested in autism with a speech delay would be able to read stuff on the internet about autism in peace. We would not be bombarded with the constant trivialization of autism. We would not be insulted because we want a better life for our children or for ourselves. They would no longer be able to call those of us who don't like our autism and wish to be cured of it "quislings". They would no longer be able to claim that they deserve to be on the board of directors of autism speaks because of the old "nothing about us without us" mantra. After all, it would no longer be about them.

I realize all of these scenarios are a pipe dream. Assuming that the DSM is in fact changed and Asperger's is eliminated as a diagnostic category (it may or may not be) they could still say that they are autistic. It is irrelevant that they never had a speech delay or the challenges that more severely autistic persons (even myself included) have had. This is what would probably happen if the DSM were changed, they would just call themselves autistic. They would even, according to the article itself, still be able to use the term Asperger's in the loose sense.

Of course, like Martin Luther King, I have a dream.


De Chao said...


Are you capable of expressing your mind? Yes. Sensory difficulties? Develop an obsession with being a tough person, and believe that you ought to try, if the objection you have is pain related. It worked for me. Social difficulties? Ask questions if you don't know what people are talking about. If a person matters, then they don't want to hurt you. If they do, then they don't matter. All difficulties can be erased. I am for finding out what the erasers are. Including giving you a try to move off the Autism Spectrum if you so desire. Just, you wouldn't be outside ALL diagnostic criteria for ANYTHING, because I want to put all humanity inside those. :)

The main thing that I believe is central to Autism is: the name, the fixative quality, and the root of these. Autism comes from Autos which means alone. The non verbal impairment and special interests would have to remain, as well as their causes. However, you could retain the special interest, the causes, and choose to kick the butt of the classic conditioning that forcibly tricked you into believing that you couldn't communicate. What is the scientific basis for believing that an autistic can't learn communication? Science is always fallible. Why would Dr.s Kanner or Asperger go out looking for completely normal people with perhaps a few things that sort of resemble traits. If one friend does marry that guy, their traits are strong enough for an Asperger's diagnosis for several of their children, and if any are supposedly normal, I bet they'll at least be quirky. Oh, and, the Asperger's coding is covered by the DSM V's Autism coding. Even PDD NOS.

You can beat the communication thing by developing an interest in different types of human brains and different aspects of communication. Dude, that's no more than a stereotype that's just been validated a lot, without finding a way to challenge it. N-E-W-T-O-N was MORE validated. EINSTEIN took him off his hobby horse. Why don't you try it? Just find a way to sever your emotions from your thought. Boost your belief in yourself, because belief is necessary to avoid any semblance of failure. I'm willing to bet it can be done.

Among monozygotic (identical) twin pairs the concordance rate for autism ranges from 36% to 91%, with 60% being a widely accepted number (as far as I can tell, e.g. Bailey et al 1995 ). Obviously, if the twins were both being exposed to the same things, there must be something about personal development.

Kent Adams said...

"My proposal to the authors of the DSM is to eliminate both Asperger's and PDD and just have one diagnosis of autism. One of the mandatory criterias for whether or not one could be diagnosed as autistic would be to have had a speech delay before the age of 3. "

I would agree with this as well as adding that mental retardation as an axis 1 diagnosis in childhood be included as well in distinguishing adult diagnoses.

I believe most in my support group of those with AS, severe AS as most have in my group, had a first diagnosis of mental retardation as children.

I say this selfishly because that was my early history, being identified as mildly retarded.

Jake Crosby said...

Jonathan, people with Aspergers have average to above-average IQs. 70% of all those who suffer from ASDs also have some form of mental retardation. There is no way that can explain an increase that caused the autism prevalence from 22 years ago to be 3-5% of what it is today.

Mercury as you know has been disputed as a possible cause of autism for allegedly being implicated in "smaller brains" of victims due to microscopic analyses that did not look at brain in full but noted considerable white matter loss, particularly by none other than your favorite neurologist, Dr. Margaret Bauman.

And yet, white matter loss has since been implicated in autism, what a surprise. Perhaps that was why Dr. Bauman dropped out of the Autism Omnibus as an expert witness for the government.

De Chao said...

I say, let's put all humanity under one label, and organize it by degree of severity. That way, the neurodiversity types'll be satisfied, your type'll actually stop being so crazy, and listen to some sense, and maybe the normal people will finally give us all a job we can take, and psychiatrists who bully will be stripped of their licenses!

Or maybe I'm just crazy for even hoping.

Larry Arnold PhD FRSA said...

What people fail to understand is that a name is just a name,

If you look at the history of the autistic spectrum you could perhaps visualise Asperger and Kanner as having discovered two seperate streams that eventually flowed together, what you have to realise is that they both contain the same water at source. Asperger and Kanner were describing the same thing, it is only later on that it got so blurred.

Autism is not monolithic neither is it divided into two subtypes either, it is complex, the banks of the rivers overflow and mingle with other waters so often, to fully understand autism is to look at the landscape from above and appreciate the geography.

Its not the behaviours that make the conditions real or otherwise it is the underlying neurological processes and I am sorry Jonathon but your bar room science is just not up to it.

I am not part of a dangerous cult, indeed at 54 I consider myself to have a lot more maturity, and hard won wisdom than a lot of "upstart aspies" who are just finding themselves. I am part of the mainstream, right in the middle of it with the NAS and Birmingham University part of the establishment you might say, never mind whether you or your pals find me annoying or not.

farmwifetwo said...

My eldest is now dx's with NLD. We were non-verbal until the age of 3, echolalic at 4.... and dang near normal at 10 (lot's of speech therapy public/private). So yes, he would fully qualify for "autism" under this criteria. Q?? Would I re-dx him once more to that dx.... not likely. His issues now are more LD's due to school curriculum than dealing with RL. His initial dx was Mild PDD at 2.5yrs, his current one is "a mild form of autism specturm disorder" (which is the official dx on his paperwork at this time) we were told verbally he had NLD w/ S/L delay. NLD doesn't have a S/L delay (and he no longer qualifies for speech therapy services) but he fit that criteria better than that for Mild PDD (dx at 2.5yrs) or Asperger's.

I have NO issues of anyone with a current Asperger's dx getting services if they need them.

My issues are solely these ND people that think "Asperger's = genius" and have turned it into a "cutsie club". IMO parents of children with full Asperger's who have disabilities need to complain about them as well. They are doing their children harm in making it look like they don't need the services they desperately do.

As long as Asperger's goes, the "followers", the self-dx'd crowd goes, and we are simply left with those who fit the criteria (don't care about early speach, just b/c one can pop words doesn't mean one can speak), and those that need services get them....

That's all that matters.

De Chao said...

"My issues are solely these ND people that think "Asperger's = genius" and have turned it into a "cutsie club". IMO parents of children with full Asperger's who have disabilities need to complain about them as well. They are doing their children harm in making it look like they don't need the services they desperately do."

Try out Autistics.org. I wouldn't call those cutesie. And, there's a girl who complains about her old therapist a good bit on a site I frequent. Yeah: I kind of agree. Except, normal kids ought to have help 'till they're to a similar degree of capacity. No one is reaching their full capacity under this system.

Anonymous said...

I believe PDD-NOS should be eliminated from the DSM. The HFA individuals with a speech delay should be legally labeled as having PDD, yet the individual should feel free to advocate to others whenever necessary that he/she has PDD or Asperger's. I think it's a better way of advocating one's disability without having to feel weird about telling someone "I'm autistic" since that label, in reality, fits the individual who grows up non-verbal with behavioral issues like rocking back-and-forth constantly and banging his/her head against the wall.

I would still keep Asperger's in the DSM, but make it a mild form of PDD while PDD would be the mild form of autism. In other words, Asperger's = autism without speech delay; PDD = High Functioning Autism. Autism should be seperated from both PDD and Asperger's, and the latter two labels would get a whole new umbrella.

Those who have signs of autism from the start of toddlerhood who appear they're going to respond well with any type of therapy and be able to live an independent life should be classified as having Asperger's Disorder, where a speech delay must be present. The ones who don't have a speech delay would still be labeled as having Asperger's Syndrome. When it comes to advocacy, the aspie could say he/she has Asperger's.

Droopy said...

Zhu Que said...[...]Try out Autistics.org. I wouldn't call those cutesie.[...]

I wouldn't call it 'autistic' either -- that site is the construct of Laura Tisonsik and Amanda Baggs, two of the most infamous blatant autism-faking hoaxes on the planet.

As for the main topic here, unfortunately this sort of nonsense is exactly what Neurodiversity wants

They'll be even easier to cackle and claim to be 'autistic'

and whoever it is that's observed that Conner and Ari will be considered equal is quite right

which means it'll be be even harder for conner's challenges and needs to be taken seriously for him to even get supports and services he really needs while the Ari's of the world will know how to rather artfully get communication devices they don't really need for when they feel like having a bout of selective mutism, support services the truly disabled need but for working the system a little Ari and the rest of his chums can have what to them is simply overgrown housekeeper services etc.

its sick but its an even easier way to deny the existence of the truly autistic, a rather cruel cost cutter move at the expense of the most needy since we're all going to be seen as cute little aspies (and will be able to be made out to be exactly that on paper no matter what we actually are)

a few of them like Ari and Baggs will be richly rewarded for their services, house 'autistics' to get bangles on their fingers (see one of Baggs entries for a literal example of this) for their efforts while the truly autistic are left unseen and unacknowledged to rot (now its just gonna be that much easier)

the US national healthcare thing is being very closed to being passed, gov't has their reasons for revamping this 'pre existing condition' so that only those who are the most savvy at working the system (and that is of course, our loudmouthed already self-diagnosed 'autistics' in the lot who in the process serve a purpose to the gov't to say "hey Autism's not a disability its just a shiny difference and we don't need no stinking help 'cept for a few trinkets we think are cool for ourselves")

De Chao said...

I don't know about Laura Tisoncik, but, if you look around on Amanda Bagg's site, you'll find papers that at least look official. The point of this part is, no one has definitive proof for whether or not. If you do, I dare you to make this not the moot point I think this is.

On the issue of your kids getting left out here:

If nobody uses their sense, then that just might be the case. But, I DON'T WANT THAT!!! NO ONE deserves to be ignored, misunderstood, and marginalized. Especially let alone the ones who are most LFA/severe. I have a plan, though. I know what gives *me* issues, therefore, what might work for me, might work for those much less fortunate than me. All I need is a Neuropharmacological degree.... But ultimately, even if we get your children to the capable degree, the only thing that'll finish the job is acceptance and undersstanding. Two things for me to work for, and only one of them likely. Blast... I shall do as I can. *is determined, grits teeth*

You may ONLY want a cure for your kids, but the only way you deserve to get that, is if you learn to understand them after we get them capable.

You see, even if we take away the sensory aversions to life in general, we will still be autistic (which comes from a greek term for alone) if you leave us by ourselves. If you give us aversives to learning to read you like a book, as I have no doubt we could, we will not want to learn you. This is basic Psychology, classical conditioning. Acceptance WILL be what matters, even after we've taken away the mainmost important issue.

Anonymous said...

This post will get somewhere regarding the topic, eventually.

I know little about autism. The little I know comes from some psychology classes I've taken at a Canadian univeristy (so yes, I've learned about disorders using the DSM as opposed to other criteria used in Europe.) One thing that stands out in my head was an old video from the 50's I think. It was probably only about 30 min, and it followed the 'lives' of 2 or 3 children who were diagnosed as autistic at a very young age. It showed them doing lots of repetitive movements and they didn't really pay attention to people. They were all subjected to daily intervention and attention to try and get them to get them to act normal. Years later, one of them was shown to still definitely be autistic as a full-grown adult. Another one though, they showed at about the age of 14 maybe, was simply playing with his friend, totally acting normal. Now, in both cases, the video claimed the intervention helped them both a great deal, since even the autistic woman could still help out around the house, even if they were still socially unresponsive.
(I will say I really can't say for certain how valid the film is...my first year psychology textbook quoted stats from famous studies which I learned 5 years later in a 4th year class which have been scrutinized a lot and many people think were actually doctored.)

Along the same lines, my father is a very respected very influencial person in his field of study, and at some point during some random dinner conversation a few years ago, I heard from him that he never learned to speak until he was 5 years old! (I believe we were talking about how much language influences thought.)
He's never been diagnosed with autism or anything that I know of, but I have a very strong feeling that if he were born in the 2000's instead of the 1940's, he'd have been diagnosed and treated quite differently as a child. His personality (as I see it), is pretty arrogant, and he's not great at being social (but not terrible either) unless he's had a few drinks and most certainly is highly intellectual. He's married and has a job and is a 'success'.

From reading this blog, there's clearly a lot of self-proclaimed people who, upon looking back at thier childhood, and upon seeing that there is a mental illness associated with what they remember their childhood as being, say they have that illness.

My point is: How can you classify an illness or problem which must be diagnosed by having childhood symptoms which appears (to me at least) that it doesn't necessarily follow someone into adulthood? I suppose the official diagnosis of either asperger's or autism says that they are likely to not get better or improve, but when someone functions regularly while still having the diagnosis for the illness (as it must be for mental illnesses by definition, unlike the more usual diseases where you can have it but not have crippling symptoms), then they should no longer fit the categorization of having that illness.

Coming across ND sites just by chance really hit me. If you don't think there's anything wrong with you, and you are happy with who you are, and find yourself functioning and living just fine, all the power to you. Instead of saying that you have aspergers and are still fine, how about you say that you don't have aspergers? The criteria clearly say "The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning." If you are successful on those 3 levels, then you are not impaired.

It seems that people have ignored that they have to have an impairment in order to be diagnosed already, why would they pay attention to other changes in the DSM since people clearly pick and choose what they want to hear already?


Anonymous said...

I run a center for people with mod-severe autism aged 7-55+ , most have some form of intellectual impairment. AS is a long, long, way from the this group. Our admission criteria is a primary diagnosis of autism - we do not take AS as we do not have the skills to help. If the DSM changes we will have to change our admission criteria and begin doing another layer of diagnostic work to carve out AS. A lot more work for no clear purpose that I can see.

Personally I think it would be much better to carve AS out of the ASD spectrum and give it as it's own category in the DSM - the needs are completely different. We could then get back to reality and lobby for support as fits the person. AS cannot speak for ASD even though they think they can - guess this is an effect of lack of ToM!