"Autism as an identity, not a disease" features very high functioning university English professor Melanie Yergeau who serves on the board of directors of the Autistic Self-Advocacy Network, an organization composed of very high people on the autistic spectrum who promote Neurodiversity perspectives which present autism as a variation not a disorder. Ms Xu does not meaningfully present the other side of the argument by referring to the great number of persons with autism disorders, most diagnosed as children (unlike either Ms Yergeau or her founding ASAN member Ari Ne'eman whose "autism" symptoms were so mild as to escape attention until their college or adult years) for whom the challenges of autism disorders are much more serious than those faced by Ms Yergeau.
Many children, like my son diagnosed 14 years ago at age 2, were diagnosed early because their symptoms were severe and obvious. Unlike Ms Yergeau or Mr. Ne'eman autism is very serious for most of these children and will include cognitive challenges, limited communication verbal or otherwise, self injurious behaviors and lives spent in residential care of one level or another.
For Ms. Yergeau, Mr. Ne'eman and their fellow ASAN Board of Director members autism may be just an identity to be embraced. If it is not actually a disorder for them, if it does not actually limit their daily functioning or prevent them from becoming professors, corporate directors, media celebrities or otherwise impair their lives why then did they accept a medical disorder diagnosis of autism or Asperger's in the first place.
Parents fighting to help their severely autistic children face many obstacles. One of the most obnoxious of such obstacles is the harmful ideology of ASAN Directors and other very high functioning autistic persons who feel the need to own the medical label which they embrace while telling the world it is not in fact a medical disorder. Not content to seek awareness of their specific high functioning autism realities they pretend to speak on behalf of others, including other peoples children, who are much more severely affected than they. They make public efforts to interfere with the efforts of parents seeking cure and treatment for their own severely autistic children.
The Michigan Daily's benevolent portrayal of this harmful Neurodiversity ideology is shameful, irresponsible journalism.
Hi – Will you please post a link to your important Blog at The Autism Community at vorts.com? Our members will really appreciate it.
ReplyDeleteMembers include: Those living with Autism, parents of children with autism, their families, friends, support groups, etc.
It's easy to do, just cut and paste the link and it automatically links back to your website. You can also add Articles, News, Photos, and Videos if you like.
Email me if you need any help or would like me to do it for you. I hope you consider sharing with us.
Please feel free to share as often and as much as you like.
The Autism Community: http://www.vorts.com/autism/
Thanks,
James Kaufman, Editor
Eye opening...
Autism can't be portraited as an either or, and it may also be portraited as autism alone without comorbidities.
ReplyDeleteAutism alone, according to DSM-V, Leo Kanner and Hans Asperger is not delayed language development and delayed cognitive development. It is a deficit in social and communicative behavior, and a stereotypical behavior pattern. Comorbidity, like delayed language development and mental retardness should be seen separate, and may be what make the real difference between autistic people. In talking about autism one should be clear of its ontology, this way one can for sure know that one talk about the same diagnosis.
I'm one of those who are a proud autistic, and I define mye autism according to the descriptions by Leo Kanner and Hans Asperger. I'm still in diapers and in need of ADL support every day. This is because of a combination of autism, other diagnosis and contextual factors. This combination is what makes it wrong for me to give the autism the responsibility for it alone, and why I can't talk about the singular case of autism as something which I would have cured. Autism alone is my identity. Autism together with my other diagnosis and contextual factors is my disability.
They just think differently about it.
ReplyDeleteI have a cousin who is deaf--she is married to a deaf man and they are very involved in the "deaf culture"--they do not consider it a deficit. My cousin was quite disappointed when her daughter was born with hearing,
Ari Ne'man and company are very, very tiresome. . . but their nonsense is perpetuated by the APA. Not an illness? Then how come there's a diagnostic code? Give me a break. This whole issue is, simply, a tremendous rip off. How many people hold high-paying jobs due to their identity alone? Granted, identity politics was very, very big - but identity considerations are falling fast in these times of economic in-fighting. The autism Dx still has a fair amount of milage left - lots of young energetic parents advocating fot their kids. Those parents will inevitably burn out (really, there are few of us parenting adults who are also activists! A fair number will come to the realization that their kids will not grow up to be Ari N's - and I predict a backlash.
ReplyDeleteFinally, @Proud Autistic: how did you arrive at Autistic as your "signature" identity? That is a process which begs careful consideration. What makes this a sought-after label? or not? I think that's a question that really needs study - we can argue about the applicability of the label until the diagnostic code and etiology finally approach reality.
My autism spectrum disorder is diagnosed by a Director of Medicine, so that should be clear enough. My understanding of autism spectrum disorders is from the work of Leo Kanner (1943; 1957) which describes the following symptoms of early infantile autism (he invented that diagnosis):
ReplyDelete-A disability to relate themselves in the ordinary way to people and situations from the beginning of life (1957, p. 739).
-An extreme autistic aloneness (1943, p. 242).
-Aquiring the ability to speak either at the usual age or after some delay (1943, p. 243).
-Excellent root memory (1957, p. 739).
-Anxiously obsessive desire for the maintenace of sameness (1957, p. 740).
-Good cognitive potentialities, good intelligence and astounding vocabulary (1957, p. 742).
Further, the work by Hans Asperger (1991) show mostly the same symptoms and has also a more depth on sensory problems in which Leo Kanner (1943) only mention it short; in speaking of food refusal and hearing sensitivitiy and proprioceptive sensitivity.
This is in short words both what describe me and my symptoms in its wholeness.
In saying I'm autistic I'm saying that I identify myself through the foundation of meeting the world in a strict sameness (Kanner, 1957), with an original experience hard to be influenced from others without my approval, and with inability to learn from other human beings (Asperger, 1991). This foundation has come to my consciousness through a different way of using language not meant for social communication, but for living (Kanner, 1957; Walenski, 2006). My consciousness as a result of this process sensory stimulus different, and my relation to the world is a relation to myself; called autistic from the greek words auto; self and istic; follower of (Asperger, 1991).
So my 'label' is an etymological 'label' of autism more than a DSM or ICD 'label'.
Sources:
Asperger, H. (1991). 'Autistic psychopathy' in childhood. In Uta Frith (Ed.), Autism and Asperger syndrome. (p. 37-93).New York: Cambridge University Press.
Kanner, L. (1943). Autistic disturbances of affective contact. The Nervous Child 2(3), 217-250.
Kanner, L. (1957). Child Psychiatry. (3rd edition). Illinois: Charles C Thomas Publisher.
Walenski, M., Tager-Flusberg, H. & Ullman, M. T. (2006). Language in Autism. In Steven O. Moldin and John L. R. Rubenstein (Ed.), Understanding Autism: From basic neuroscience to treatment. US: CRC Press.