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Reader Response to WaPo Article on Neurodiversity

App realityManaging Editor's Note:  Yesterday, we ran Anne Dachel's take on the Washington Post article on the joy of autism and the mirage of neurodiversity,  AofA reader Aimee Doyle wrote a pointed letter to the reporter and shared her letter in our comments. We thought it was an important point of view. If you would like to share your thoughts with Ms. Somashekar, you can reach her here.

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Here's a copy of the email I sent to Ms. Somashekhar this morning. I'll post again if she gets back to me (unlikely). But I just couldn't let the article stand unchallenged.

__________________________ Dear Ms. Somashekhar: I have some comments on yesterday's article "In Autism, A sense of Comfort and Identity, Not Dread." I am the mother of a 25 year old man with profound autism, who will need lifelong care, so I speak with substantial experience of autism. I was disappointed in your article's narrow focus on the neurodiversity movement. Most individuals on the spectrum are not high functioning. Approximately a third of those on the spectrum are non-verbal; another third or so (my son falls into this category) are semi-verbal (some language, but not really able to write or hold a conversation). The remaining third have high functioning autism (some of whom can finish high school and hold a job with supports).

The percentage of individuals on the spectrum who have Asperger's syndrome and who can go to college, get a job, get married, have friends - participate in the neurodiversity movement! - is vanishingly small. Yet this is the population that you describe, and you imply that this "movement" includes all individuals with autism. Why does the media never cover the challenging aspects - both personal and societal - of moderate and severe autism?

I realize you interviewed and quoted Kim Stagliano, which was sort of a nod to balance, but was lost in the overall thrust of the article. However, you didn't discuss the tragedy of wandering - over 50% of individuals with autism wander, which has resulted in death by drowning or other causes.



You didn't discuss (and the neurodiversity movement likes to ignore) the behavioral challenges or the self-injurious behaviors of individuals with profound autism. For example, when my son was an adolescent, he was both violent and self-injurious - he hit his leg so many times he developed permanent bruises and all the hair fell off his leg. He went through a period where he would scream for hours from midnight to 3:00 a.m. I had bruises that would have qualified me for a domestic violence shelter. There were days when he would relieve his anxiety by slugging my husband. Among my friends,

I know a young man on the spectrum who ate one of those small, moveable magnetic sculptures, and had to have major surgery to have the magnets removed. Further, many individuals on the profound end of the spectrum have serious medical issues (such as severe gastrointestinal problems), that you - and the neurodiversity movement don't address. And of course, no one ever talks about fecal smearing.

And I haven't even gotten started on the costs of autism - over 20 years we have spent hundreds thousand dollars trying to help our son - and I know families who have spent much more. Despite progress, my son is still profoundly affected. The government has already paid hundreds of thousands of dollars for his education and therapies (years of speech and OT) at the Ivymount School under IDEA, and continues to pay through monthly federal SSI, and his Maryland DDA funded day habilitation program and his after-care CSLA. These expenses will continue for the rest of his life, and likely increase when he needs to move to a group home. Multiply this times hundreds of thousands of autistic adults (extrapolating from the 1 in 68 CDC statistic) and you have budgetary meltdown.

I love my son dearly. He likes to paint pictures and participate in Special Olympics. I celebrate all his accomplishments. He will continue to live with us for the foreseeable future. But my son will likely never hold a paid job, have friends, have a girlfriend, live independently.

At gatherings with higher- functioning individuals with autism, he is ignored - some self-advocacy groups don't even allow lower functioning individuals to join. I personally have never met anyone higher on the spectrum who is interested in spending any time with my son whatsoever. I asked a neurodiversity proponent one time what should happen to the individuals who are severely affected. She blithely replied "that's what group homes are for." I find that insulting and dismissive. So there it is - a view from the other side of autism. It's time to show something besides the shiny, happy picture.

Comments

Angus Files

These people have not a clue what they write about, Coincidences and ignorance pre-seeded by shut up money rules these days. The so called journos write to the highest bidder and the grey matter they were born with has long since departed and is replaced with dollars for brains.All to the suffering of our kids/adults shame on them.

MMR RIP

ldb

How dare they regard autism as neurodiversity, AS THERE IS NO PROBLEM with a person with autism. Come hear my story with both a high functioning son, and then live with my non- verbal grandson at 17( Be prepared to wipe his butt and listen to his 250 pounds bouncing on his bed 24/7).

Patience (Eileen Nicole) Simon

Sandhya Somashekhar replied to my email and said she does not anticipate writing on this subject again soon. I respond with the following suggestion:

Dear Ms. Somashekhar,

Thank you for responding to my email.  In October or November an IACC meeting will take place in DC or Bethesda.  I plan to be there, and as a public speaker will be restricted to 3 minutes, which is OK (Gettysburg Address length).  I just hope public comments will be better discussed than in the past.  IACC is the Interagency Autism Coordinating Committee.  

I will plan to contact you in advance.  Someone from the Washington Post should attend and report on IACC meetings.

Eileen Simon

Birgit Calhoun

The way this article portraits autism is a very unsavory attempt at making autism an acceptable condition. I for one have always loved my kids, but I have also always wanted to find a cause.

If indeed there is such a thing as neuro-diversity, it apparently is made to look like just one more type of diversity, i.e. gender/sexual diversity, racial diversity, basically normal conditions that are part of the human condition. This WaPo article gives the impression that autism is "normal" and wonderful.

It makes it safe and even wonderful for the general public when someone says: "My child has autism." The reaction would be: "How nice I am glad those people have found a niche. Not to worry autism is great and now we all can sleep again at night." It keeps those who might care from caring. It turns them to other, more rewarding charitable endeavors, and it keeps the already clueless medical community from looking for a cause (mercury?). My question is: Is this WaPo article in fact a PR stunt?

Shill Shock

My kids have significantly recovered due to years of expensive alternative medical interventions and diet, none of which is covered. They're extremely lucky in many ways. They know what happened to them, understand the politics.

Bad news for ND when recovered kids grow up and start countering the astroturf Neurodiverse rhetoric.

Benedetta

Danchi; My heart just ached hearing this story.

Patience (Eileen Nicole) Simon

Dear Ms. Somashekhar,

My autistic son is 52 years old, and 50 years ago I began reading everything I could find on language disorder. In 1969 I returned to school, and graduated from the Boston University School of Medicine in 1975 with a degree in biochemistry. My son’s problems are the result of birth injury. In PubMed lookup N. Simon, echolalic speech, and contact me if you would like to discuss an alternative to the neurodiversity viewpoint.

The idea of neurodiversity is based on a simplistic interpretation of "traits" used to define autism. These traits are in fact all signs of neurological injury: (1) Language impairment, (2) repetitive movements, and (3) impaired level of (social) consciousness.

The idea of "social disorder" was a euphemistic attempt to diminish the seriousness of impairment of consciousness, but this is what people who claim neurodiversity picked up on as a way to describe their sense of awkwardness in interpersonal relationships. They strongly resist being viewed as retarded like the majority of children diagnosed as autistic according to the criteria of Leo Kanner in 1943.

Neurodiversity has nothing to do with the huge increase in neurologically impaired children who need special education now, and in the future they will need 24/7 care. The federal Combating Autism Act was intended to fund research on the increasing prevalence of severe autism. The neurodiversity advocates were able to intervene and even get the latest extension of the act changed to the Autism CARES Act.

It is appalling that well educated health professionals are paying more attention to this group of people than to parents of severely disabled children.

Sincerely,
Eileen Simon

Danchi

Another Government/MSM/Pharma paid for diversion to misdirect the public on the true and genuine consequence of pharmaceutical company created Autism. Reminds me of the Autism month.

My cousin has an autistic daughter. Even though she is verbal and has some understanding of things she is far from being functional and never will be on her own. She attended high school where my daughter teaches, graduated, went to prom, had a party-experienced all the rituals of graduation but in the fall found herself back in high school in the same program because there are NO programs in our community for autistic children once they are out of the school system. Returning to high school was extremely disturbing to this girl. The first few weeks there she was a challenge according to my daughter but the teacher managed but one day she just erupted and began screaming, running out of the room yelling she didn't belong there she graduated and kept asking why was she there? My daughter took time off from her class and sat with her until her Mom showed up (university professor who had no idea vaccines could cause problems) to take her home.
Over the last year my cousin has been looking for ways to engage her outside the home and school which she refuses to go back to. It's heartbreaking to hear about.

These are the stories that aren't being told. The first generation of Autistic children have come of age-where and what are parents to do for them?

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