What does it mean to be a representative of the autistic spectrum and who qualifies seem to be some of the perennial questions in autism advocacy. When someone speaks from the perspective of a spectrumite, should we take note and if so how much? The issue has moved further into the orbit of my conscious focus since the Canadian Senate hearings but it was always lurking somewhat in the background. Thomas McKean has some fairly definite views on the subject and I’d like to borrow one of his lines because this I can agree with:
“There needs to be accountability…., because representing the autism community as a person with autism is one serious responsibility.” 
Just so. The person who raises their hand and waves the diagnostic banner is by implication, a representative of the spectrum, and like other ‘representatives’ is subject to a largely unwritten code of conduct. If, by analogy, an elite athlete is representing their country at an international venue, their actions are not judged solely on their sporting prowess. Should they find themselves in an acrimonious exchange with the local citizenry at the pub or in the parking lot, they may well find themselves on the first available plane home because they are not representing merely themselves, they are also acting as representatives of their country. Similarly, I think we have the right to expect that those with ‘credentials’ who speak on autism issues will not bring the spectrum into disrepute. They should have a care, because they are in effect representing more than themselves.
Disrepute is rather broad and practically anything can be made to fit, but there are some situations where it could be said that the transgression is clear. I should add that in re-reading the material on this, I found it quite reassuring to find that spectrumites are just as muddle-headed, irrational, driven by agendas and prone to having their intellect trumped by their emotions as any other specimen of the human race.  Heading the list of the irrational is this blog commentary following the publication of Amy Harmon’s article, “How About Not 'Curing' Us, Some Autistics Are Pleading”, which caused something of a ruckus, particularly among some parents of the autism community. The blogger made quite a few opening remarks about Michelle Dawson: 
- She claims to speak for autistic people across the spectrum
- Even if she has Aspergers , this doesn’t qualify her equate all forms of autism with her own life experience.
- She claims most cases of autism resolve into unique quirkiness that should trouble no one.
- She has no concern for parents facing the possibility of having a 40 year old toddler.
- She speaks as if she knows more than they do about their children.
Those opinions were then followed by the fiction that Ms Dawson’s comments in the article painted a rosier picture than the reality and the usual response from some sections of the autism community like ASAT, that is, appeals to every emotional red herring in the book.
Assertions1 to 4 are not backed by anything the author read in either Amy Harmon’s article or any other of Ms Dawson’s articles including the Misbehaviour of Behaviourists. Assertion 5 is merely illogical and the comment is as I said, a fiction. Michelle’s contribution to the article were miniscule really and insufficient to paint any kind of picture, rosy or otherwise. So, how could the author get this so wrong and she a card carrying member of the spectrum? I suspect that she hadn’t read the article or any other of Ms Dawson’s articles and was relying on the testimony of the folks at the Wampum blog. This seems reasonable as she calmed down quite a bit after she had done some reading and became quite conciliatory though this was marred somewhat by her final offering – some of the finest social reasoning I’ve ever read. The folks at Wampum should be proud. 
“When it comes to framing a message that wins the support and cooperation of others, anything that doesn’t have that as its foundation [the goal of self sufficiency] won’t register with people.”
She’s probably right about that but Lord, it was just as much dancing around the issues that had been raised by introducing others that hadn’t, which is not a tactic that I usually associate with the spectrum, but there it was. The important thing here – she made a host of unsupported and unjustified assertions – not a representative to be proud of.
The first point that she made - that Ms Dawson claims to speak for autistic people across the spectrum needs addressing. Many people have made that assertion about ‘autistics’ usually when said autistics are spouting words they do not like. For Thomas McKean, the point is central. Only those with the proper diagnosis at the proper age can speak for the spectrum. As far as I know, Michelle has never claimed to be speaking for anyone but herself and as far as I can work out, Mr McKean is wrong. It simply isn’t possible for anyone, spectrumite or not, to be able to make a valid claim to speak for the spectrum. In an interview I saw recently with Roy Richard Grinker, author of Unstrange Minds, he made the point that there is not ‘Autism’ but ‘Autisms’. Therefore, Thomas or Michelle or anybody really can speak only for their bit of the spectrum and their own experience of it. That doesn’t mean that their view is unimportant, but as happens with similar issues, there are limits and these limits are well understood. Going back to our representation analogy, if the Prime Minister gives a rousing speech on this wide brown land of ours, he speaks as a citizen and would be expected to know far more about it, on many levels that a visitor. He speaks with authority. If Thomas McKean gives a rousing speech on autism, he speaks with authority also, but not with absolute authority. It is well understood that there are limits because the group just like the citizens of a country are heterogeneous. No one expects the Prime Minister or Thomas McKean to be representative on all points or to speak for all parties, unless you have a grievance and then you get the specious argument that Michelle or someone else cannot speak for the spectrum. Well duh! is appropriate here.
Why have autistics speak at all? I think it’s important, crucial even. There is apparently an autism conference circuit, which promotes autistic speaking though as some have pointed out – this can degenerate to the level of ‘self-narrating zoo exhibits’ to quote Jim Sinclair. Obviously there are a lot of people who want to hear the story from the inside track but the frame for that story and its overall message may not be what spectrum residents wish it were.
There are roughly two ways of looking at autism, which dictate what kind of message is delivered from the autism pulpit. The first is that autism is a devastating disease, just like cancer for which a cure must be found. Any condition that takes such a toll on everyone involved in terms of finances, health and happiness should be prevented at all costs. Naturally the proponents of the ‘Cure for Autism” want to hear a message that supports their endeavours. Enter Marty Murphy. She’s your gal. Her “My Name is Autism” piece is a kind of free form poetry version of the Autism Speaks video ‘Autism Every Day’ and makes the same points – all in support of the basic thesis that autism is so terrible that eradication would be a mercy for all concerned.  The interesting point about Marty’s forays into public speaking is her representation of herself. Her co-author of ‘My Name is Autism’ is an Omri Fiman, a young non verbal autistic male. But not really, because Omri Fiman is really Marty Murphy, a middle-aged verbal autistic female. Stranger still, ‘My Name is Autism’ is practically a verbatim plagiarisation of a piece written years earlier by a non-autistic mother.  As far as I know, Ms Murphy is still a highly regarded speaker on the autism circuit in the wilds of Illinois and neighbouring states and an upstanding member of her local autism chapter. What is bothersome is the uneasy feeling that here might be an extreme example of an Uncle Tom Autie (UTA). There is always a proportion of any population for whom self-immolation is attractive and just as Uncle Tom made the perfect apologist for the natural order of things pre-civil war, that is, slaves good when subservient, Marty Murphy apparently enjoys portraying herself as a festering ‘thief in the night’ and a whole lot besides. There could well be shades of S & M in the mix but I don’t understand this very well. I do know that I find people who are into advanced masochism, complemented by the quite amateurish subterfuges of Ms Murphy, embarrassing. I also dislike laying the blame for this fiasco on the local autism chapter for deliberately selecting the most suggestible and gullible autistic they could find and using that person as a public relations device. That would suggest that autistics are dumb little innocents who cannot take responsibility for their own actions, not a position that I am keen to champion. But then, I’m not in the pro-cure crowd.
The thing with remaining at arms length with the cure factions of autism advocacy is for me a conviction that autism is not a defective but otherwise normal person wearing autism like a medieval chastity belt while the parents search frantically for the key. Autism is a different way of being if recent studies in perception and neurological configuration are anything to go by. That does not mean that autism cannot be disabling and terribly disabling. Many conditions that are not autism can be equally disabling. However, no one uses the worst manifestations of those non-autistic conditions to say that this is the reality for people, all the people, who are not autistic. And no one asserts that the disability is all that there is to the person either. Somehow the likes of Autism Speaks manage this without a hitch for autistic folks. God knows why. There are it seems quite a few autistic self-advocates who buy into the rhetoric. Thomas Mc Kean comes to mind.  He is very much pro cure according to his private email to 67 luminaries of the autism conference circuit even though that position is somewhat qualified by being targeted to the ‘more severely affected’. The first point for Mr McKean and others of that ilk to consider is that primarily, if autism is a defective state of normal, then they have nothing to say that is of value. Far better to have a non -defective speak on their behalf. It would be ethical to consult with them on treatment options but that would be a form of noblesse oblige and other than that, what they would have to say would be pretty meaningless.
The second point to consider is that buying into the rhetoric is neither here nor there, if you are merely a parent, but if you are speaking as a representative of the spectrum, you had better be able to support that rhetoric no matter where you found it or from whom you heard it. To illustrate, Mr McKean’s private email to the 67 autism circuit luminaries contained a number of sweeping statements concerning those who say ‘ABA is wrong’ and those who apparently don’t want to see autistic children medicated, using the line that anti-epileptics are necessary and that clonidine is useful. There are no references for what exactly was written or said or the people involved and that is certainly transgressing the boundaries of proper representation.  It is not therefore possible to judge the veracity or otherwise of Mr McKean’s assertions. The reference to anti-epileptics doesn’t inspire confidence. Those opposing medication of autistics are generally talking about anti-psychotics. Perhaps Mr McKean has never heard of APANA and is unaware of permanent side effects of anti-psychotics such as tardive dyskinesia.  He may not be aware that the usefulness of clonidine is limited by its side effects, which include sedation and fatigue.
In a similar fashion, Jason Oldford appeared before the Canadian Senate.  Part of his testimony included this line: “ Just think of how many children will not be in group homes or institutions. Think of how many children will be able to contribute to society if they get this treatment.”. He, himself, did not get this treatment and he’s not in an institution and as far as I know not even Gina Green has gone so far as to claim that ABA is sufficiently miraculous to keep autistics out of group homes and institutions. It is necessary to have a care and a little more scepticism in some of these advocates wouldn’t come amiss. I know, or think I know what drives some of this advocacy – a desire to do anything at all to mitigate the distress of parents, even as Brigitte Harrison noted in her testimony to the Canadian Senate, conducting sessions on “mourning, on post-diagnosis shock”.  Has the Federation quebecoise de l’autisme considered that they’re essentially asking a person to mourn her own existence? And they say that autistics have a problem with empathy. Thomas McKean, Jason Oldford, Brigitte Harrisson and Natasha from the Wampum blog would run rings around the great majority of socially wired folks in the empathy stakes.
Their empathetic abilities, however, do not give them carte blanche to spout nonsense, even when that comes from a seemingly respectable source. Seemingly respectable sources may not always be truthful. Kit Weintraub was ‘the voice from the trenches’ following the publication of the ‘Misbehaviour of Behaviourists’.  She was very ready to tell the world how effective ABA was for her two children. Though more successful with her son than her daughter, she still reported that her daughter was a ‘happy ten year old’. Fast forward 2.5 years and the story has changed. 
“I have two kids with autism, one, a girl, twelve, who is extremely self-injurious. We have run a very high quality ABA program for her for years, but could never get rid of the self-injurious behaviors. Only on risperdal are they reduced, and we have seen her gain close to 100 lbs on the medication. We have had all sorts of behavioral experts come in and try to extinguish the behavior with positive behavioral interventions, unfortunately, they did not work.”
Harold Doherty sees himself as a proper sort of autism advocate, but even he is not always reliable and in this instance downright misleading. Listening to Harold, one would think that Laurent Mottron was a pychiatrist dabbler around the fringes of autism research, since this is how he refers to him: 
“Psychiatrist Laurent Mottron an alleged autism expert who publishes reports on dozens of autism cases a year, almost all involving high functioning autistics and Asperger's Persons, almost none involving the low functioning autistic persons who require such expensive intensive residential care and treatment as adults.”
Note the ‘publishes reports’ rather than the peer reviewed research that it really is and I’d love to know how he assessed the function level of the research participants or how that stacks up against other researchers. Knowing Harold, I doubt that he did any assessment at all, which rather nicely illustrates the necessity for paying attention to how arguments are framed and what supports them.
We need representatives from the autistic community speaking out quite desperately. There aren’t nearly enough out there to put the lie to the epidemic of mad stereotyping so de rigeur these days. There is an equal need for responsibility and accountability as Thomas McKean rightly points out. Second-rate or unverified second-hand is not nearly good enough.
1. Thomas McKean’s notorious email to autism conference folk may be found here: http://www.thomasamckean.com/articles/speaking.htm
2. It is just as dangerous to advocacy to assume that logic and rationality are hallmarks of the spectrum. That stereotyping is reminiscent of the ‘noble savage’ view of primitive peoples circa 1900s and we all know what happened to them.
3. Amy Harmon, How About Not 'Curing' Us, Some Autistics Are Pleading, http://www.nytimes.com/2004/12/20/health/20autism.html?ex=1178769600&en=8fa333dbfe94b9ef&ei=5070
4. Kathy Cramer, Blog Commentary from Natasha: http://www.kathryncramer.com/kathryn_cramer/2005/01/a_response_to_m.html
5. Wampum blog
6. Roy Richard Grinker NPR interview: http://www.npr.org/templates/story/story.php?storyId=7496704&ft=1&f=1033
7. Marty Murphy, My Name is Autism: http://www.asohalton.org/My%20Name%20is%20Autism.pdf
8. Anne Watson, I am Autism, 1978: http://www.mima8.com/Autism.htm
9. Mr McKean made an additional point, again without attribution, that the folks who were writing editorials against his email were the ‘self diagnosed’. [http://thomasamckean.com/blogs///index.php/general/2006/07/24/autism_liberation] He doesn’t reference it, bur if what he is referring to is the editorial on autistics.org [http://www.autistics.org/library/whoisautistic.html] then this statement is frankly dishonest. The authors are all diagnosed autistics. It’s this kind of carelessness that eventually earns one a reputation for being at best unreliable.
10. APANA: http://www.dinahm.pwp.blueyonder.co.uk/
11. Senate Hearing Transcript: http://www.parl.gc.ca/39/1/parlbus/commbus/senate/Com-e/soci-e/12cv-e.htm?Language=E&Parl=39&Ses=1&comm_id=47
12. Kit Weintraub, A Mother’s Perspective on the ASAT website at: http://web.archive.org/web/20051216174906/http://asatonline.org/resources/library/moms_perspective.html
13. Kit Weintraub, Comments submitted to JRC on Friends of JRC website at: http://judgerotenbergcenter.blogspot.com/2006/04/comments-submitted-to-jrc-from-mother.html
14. Harold Doherty on Laurent Mottron: