Friday, January 25, 2013

ASAN's strange take on the Fein study

I see that the autistic self advocacy Network is at it again, lambasting Deborah Fein and company's recent study documenting "optimal outcomes" for persons on the autism spectrum.

They use the word "recovery" in the title of their piece as well as emphasizing that word in regard to the recent study which has received a plethora of media attention in recent weeks.

This would seem akin to a "spin job" as the Fein study only mentions recovery once in the study.  Rather than emphasize recovery, they mention optimal outcomes, though claim the oo subjects no longer have symptoms on the autistic spectrum as determined by interviews as well as a variety of diagnostic tests.

ASAN's article purports that the oo subjects in Fein's study suffer from depression and other issues, using the research of others to base their argument. ASAN researcher Stephen Kapp cites research obtained by a K. Doheny retrieved from web M.D., but neglects to cite a journal article.  A search of Google scholar fails to find such research done by this individual.  If anyone can come up with a more specific reference, of course, Gadfly will stand corrected.   Fein et. al., in a typical scientific hedge, merely don't discount the possibility that there may be residual symptoms in the optimal outcome group, but stated that further study was necessary to elucidate on this. 

ASAN also implies that these optimal outcome subjects felt suicidal yet neglects to present any evidence.  They have also stated that these people are still autistic but just have the ability to pass for "normal" persons.  This effort to pass they claim, leads to stress, anxiety, depression and even the possibility of suicide, yet they only provide speculation and no concrete evidence to back up these assertions.

Most troubling of all (at least to yours truly) is their statement:

Autistic people do not “recover” and the idea of “recovery” has been profoundly damaging to the Autistic community, encouraging service providers to emphasize normalcy above other more meaningful goals. Furthermore, by teaching Autistic children and adults that “recovery” – pretending to be something we are not – is the “optimal outcome” they can achieve, we send a profoundly damaging message to Autistic people, our families, and the public at large. Autism is a natural part of the human condition and not something to recover from or eliminate. The goal of autism research and service provision should be to create happy Autistic people, not to encourage ‘passing for non-Autistic’ without regard to the impact on our quality of life.

I believe some people with ASD do recover, a lucky few 100%, others partially.  I myself belong in the latter category.  In the late 1950s I was a profoundly autistic toddler, unable to speak, tantruming, smearing feces, etc.  I did partially recover, including getting my speech back, graduating college and being able to work sporadically.  However, as regular readers of my blog know, my recovery, unfortunately, was only partial.  I have profound social problems, motor coordination problems, anxieties and after multiple firings from jobs had to retire in my early 50s.

No, I don't believe autism is a natural part of the human condition.  It is a disease that if at all possible should be completely recovered from and completely eliminated, so no other child has to suffer as I did and still continue to do so.  ASAN in their statements believes that persons such as myself should be crippled and sick, that we should not have a chance at a decent life and we should continue to be handicapped no matter how much spin they would promote to have us believe their position is otherwise.

Again, they show an astounding ignorance of the Americans with Disabilities Act, what the law states in terms of how ASD's should be accommodated in the workplace and elsewhere.

Their statements are quite unfortunate and I am deeply offended by their statements that I and others like me don't deserve a cure, don't deserve to be recovered and be able to live normal and happy lives without autism.


farmwifetwo said...

My eldest son at 2.5yrs of age was mild non-verbal asd.

At 13 - as per the redo of all the psychometric and speech testing these last couple of months - is absolutely NORMAL... except for his social skills.

Mother's opinion... everyone has their "thing" and learning to live with your "thing" is part of life. Yes, we will keep working on those social skills and they are still IEP'd and being worked on by the school. BUT, there is no reason for him to call himself by any dx since there is no reason he can't have a job, a wife, children, a house... etc.

Turley said...

Farmwife2, your son is still Autistic if he still has social skills issues. He would now be Asperger's and under the DSM5 Autistic anyway. That by itself doesn't stop him from having a job, a wife and so forth. But attitude by peer groups and so forth would. Time to fight.

Anonymous said...

I am standing at my computer and giving it applause as I read your post. I read a similar response called "I don't want my kids to 'outgrow' their autism" I don't always agree with Ann Daschel, but I loved her response as I did yours
'Joslyn Gray’s piece on Babble leaves me too dumbfounded to comment. First of all, her two children with Asperger’s are 11 and 6. I’d like to hear from her in about 8 years with they’re struggling with adolescence and adult issues and mom isn’t there to help with things. Autism isn’t an asset---it’s a deficit. Something separates this child from his/her peers. That’s a disconnect that makes life a struggle. We’re being told here that autism is a new normal….Another way of being.

CMB said...

Anon, I have been "disconnected from my peers" throughout most of my childhood. I never made a lot of friends who were in my own age group. And frankly, I don't give a damn. But my autism has not kept me from making worthwhile friends elsewhere. Being in the wrong place, with the wrong people, did that.

Middle school is a horrid place for just about anyone, not just autistic teens. Enough said.

Also, the college dorms failed me miserably in terms of socialization. The people around me were still rather cliquey, and the only thing we had in common was that we were all born in 1992. It was a depressingly lonely experience, one I wish I have skipped altogether.

Some people would like to blame it on my poor social skills. But the truth be told, my peeps simply were not there. I had to look for them myself, by taking the bus and going out of town for an ASAN group, and that is where I found my fabulous boyfriend. Not only that, I have also found a way to connect with my community beyond the internet, and meet with ASAN peeps in other areas.

And most of us neurodiversity activists do not claim autism as a whole to be either an asset or a deficit. It is an integral part of who we are. Some aspects of it are difficult to deal with, yes. But I do not need any NTs feeling sorry for me and wishing I was more like them instead.