Wednesday, October 31, 2012

New York Magazine and the autism spectrum

New York Magazine takes on Asperger's and the autism spectrum. Enlightening? Offensive? A not-too-surprising view of how the rest of the world sees "us?" Let me know what you think . . .

http://nymag.com/news/features/autism-spectrum-2012-11/

11 comments:

Paula said...

I'm so glad I'm not neurotypical.

Dana said...

Some lines that stood out as I read ...

To some degree, the spectrum is our way of making sense of an upended social topography

Agreed - most people like to place labels on people. They want to make sense of what they don't understand and a label is the easiest way to do that.

Siegel sees overdiagnosis and misdiagnosis as driven largely by economic and social priorities rather than medical ones.

To a certain extent, public schools have driven the "overdiagnosis". In order to deviate from the standard education environment (which is inefective for most kids to begin with) a student MUST have a diagnosis.

“We see a lot of diagnosis-of-childhood kids, whose parents have never set limits, plus kids who are temperamentally difficult to raise.”

As the mother of a child diagnosed with Asperger's 10 years ago (before it was "popular"), this irritates me as I know it is often the accepted societal and educational view.

I'm not big on labels. I don't like the term "disability". I have navigated life (I am on the spectrum as well) and am raising my son in an environment where we both try to find innovative ways to play to our strengths rather than using a diagnosis as an excuse.

This was an interesting, but not surprising read. Much of what was said here is little more than an excuse to continue to dismiss neurological differences.

scintor said...

I found this article to be extremely hostile to people with what is now recognised with Asperger's Syndrome. It very clearly indicates that if you can function then you are clearly faking when you say you have Asperger's Syndrome. It is also clearly in the "DSM is reality" camp. It misrepresents the history of Asperger's Syndrome as being created in the 1980s instead of in the 1940s by Dr Asperger. It feeds into the myth that if you are anywhere on the spectrum, then you are doomed to a life of loneliness and failure, using the tautalogy that if you aren't, then you obviously don't have Aspergers.
I am sure that there are some misdiagnosis out there, but this article clearly implies that this is the majority case and that the studies that show that the incidence might be as high as 1 in 39 are depicted as obviously inflated and wrong.
All in all, this is a horrible article designed to dismiss the autism community and especially those of us who can advocate for ourselves. This seems to be part of the movement to put autism "back in the institutions where it belongs."

scintor said...

I found this article to be extremely hostile to people with what is now recognised with Asperger's Syndrome. It very clearly indicates that if you can function then you are clearly faking when you say you have Asperger's Syndrome. It is also clearly in the "DSM is reality" camp. It misrepresents the history of Asperger's Syndrome as being created in the 1980s instead of in the 1940s by Dr Asperger. It feeds into the myth that if you are anywhere on the spectrum, then you are doomed to a life of loneliness and failure, using the tautalogy that if you aren't, then you obviously don't have Aspergers.
I am sure that there are some misdiagnosis out there, but this article clearly implies that this is the majority case and that the studies that show that the incidence might be as high as 1 in 39 are depicted as obviously inflated and wrong.
All in all, this is a horrible article designed to dismiss the autism community and especially those of us who can advocate for ourselves. This seems to be part of the movement to put autism "back in the institutions where it belongs."

Trish Thorpe said...

Hi John,

I’d like to post a guest entry on your blog (http://jerobison.blogspot.com/). I've read through your blog entries, and have read "Look Me in the Eye" and "Be Different." I think my content would be a good match for your blog audience.

A brief bio: I am a 53-year-old female and have an older brother with Aspergers. It remained undiagnosed while we were growing up in the 1960s and 70s. We had a

narcissistic (cruel) father who used my athleticism/popularity to relentlessly shame my brother. The repercussions of our Dad's cruelty still exist today. I'd love to share my

story on your blog. I haven't ever read a story similar to mine about sibling struggles with undiagnosed Aspergers, and I think it would be a really engaging read for your audience.

Also, I wrote a book called "Fisheye" (Amazon URL: http://www.amazon.com/Fisheye-A-Memoir-Trish-Thorpe/dp/0985328800) that chronicles my journey as the younger

sister of an Aspie. I can make the existence of my book as visible or not on the guest post...whatever you prefer. I would, however, like to include as much media (images,

video, etc.) as possible in my guest post to make it as interesting as possible for your readers.

Do let me know what kind of additional information you need from me to move forward with my guest blog request and also information about your timing requirements (i.e.

when I could potentially guest blog for you). I'll look forward to hearing back from you. You can reach me at trish@trishthorpe.com. If you don't feel like a post from me

would be a good match for your audience, I'd be most appreciative if you could point me to another potential source.

Kind regards,
Trish Thorpe

forsythia said...

I found it irritating and condescending.

happyfamilyorbust said...

The article was not enlightening, and it was offensive, but mostly it was too long and unedited. I sensed that NY Mag wanted an article on this hot topic and had Ben Wallace quickly write a rambling piece.

He seems to be saying that it is wrong that the defined medical condition Asperger's and the colloquial term "Asperger's" which he believes is coming to mean "painfully shy geek" are being confused, and people who don't have Asperger's are saying they do. He also seems to resent that more people are being diagnosed with Asperger's and Autism when they don't "really" have the conditions.

He's obviously a bright man, so he's choosing to ignore that:

1) Asperger's and Autism do not yet have a concrete set of criteria, and we haven't pinpointed an autism gene. Therefore, even a medical diagnosis is based on having a list of symptoms, and can be subjective and change over time.
2) If the medical definition of Autism and Asperger's is widening, and schools let some more kids like my son have social skills classes, etc., these kids are going to do better in their future lives, so what is the problem?
3) Language evolves all the time, and the way people use it is the definition, so it's interesting, but not bad.

I could go on, but I'm beginning to ramble like Ben.

(By the way, I just finished reading Look Me In the Eye, and my last post is about how cool John and his first two books are. Kind of embarrassing, but whatever.)

helixjames said...
This comment has been removed by the author.
helixjames said...

This article was all over the place. The quotes from Nugent and Siegal were offensive as was the quote from the TV show “House.”
Bryna Siegel: "Some adults who might be very high-functioning seek a formal diagnosis because it enables them to, in Siegel’s words, “wallow” in their symptoms rather than “ameliorate” them, because they’re “a lunch ticket.”"

"Lunch ticket?" I could have a much better quality of life if I were able to earn money rather that my monthly disability (which is less that one week's income for my employed friends). If there was something I could do to "ameliorate" my symptoms I would do it immediately. Mostly my accommodations at school consist of putting me in a private room so I can write my exams and providing me with an unreliable note-taker who gives me notes 2 weeks after the class. One of my sensitivities is perfume/scented products and it is almost impossible to control this in any environment.
I was four years in to a a five year BSc. degree and only had to complete the final placement in a hospital (I was studying to be an x-ray tech) but the hospital said I was a liability, the school didn't back me and I ended up starting something new. After 5 years in a new program (psychotherapy training), the provincial rules changed and a degree was required to enrol in the final placement year...so TEN years later I am back at University trying to get a general BA. I am now 48 years old. I was “officially diagnosed” with Asperger’s two years ago.

People congratulate me and say "Well, you never give up and that is admirable" but it is also expensive and meanwhile I watch my peer and the children of my peers complete their doctoral degrees and get teaching placements, buy houses, raise families..etc.

I don't understand why employed people think that someone would want or choose to live in poverty.

The article says that it is impossible to distinguish between high functioning autism and Asperger’s - but my understanding is that there is a speech delay with autism which is not present with Asperger’s (assuming it is only Asperger’s that someone has).

The quote from "House" is obnoxious, but I don't watch the show so I don't know the context within which it was said. I don't think Asperger's "gives me freedom" or "absolves me from responsibility." Yesterday, my partner said that I was very smart and he finds the way I think fascinating - but he can navigate the world of people and people tend to instantly like him and either assume I am judging them or think I am arrogant. People also tend to assume I don't like them or I am "desperate" for them to like me. Neither of these things are true.

Ultimately I would like people to be able to read me. I would like how I appear on the outside to match how I feel on the inside. I would like to cry when I am sad or hear a sad story and not smile. I would like to be able to listen to a story and not have half of my attention on my body and face "managing" my physicality so it fits the "normal" expected response to things. I think I CAN be a jerk sometimes, but it is more out of frustration that people respond to me with 10% attention and 90% interpretation of my body language, and their interpretation part is wrong.

After interacting with people I am usually exhausted. I used to think that was because I was an introvert, but I don’t think all introverts have the same level of anxiety that I feel ALL THE TIME.

Lori Engel said...

Back in nursing school, I remember a fellow student saying "I get sad sometimes...what's the difference between that and the diagnosis depression?"- It's the same thing with 'everyone suddenly being on the spectrum'. The difference is... does it affects your life negatively and disable you from functioning effectively? If so, it MAY to be a disorder and something to explore with professionals...if not, it isn't,so let it go.
I understand it's difficult to understand disorders that lack physical symptoms and you've never experienced...My son is on the spectrum and trust me, he doesn't 'just have some quirks'! Our lives has been so stressful, his problems overshadow everything in our lives...and he is extremely high functioning! When you try and explain the problems and symptoms, they do sound like quirks, but when you live with them daily,affecting all aspects of your lives, you know it's a real disorder. If your child is just quirky, count your blessings! We love our son, but the things we deal with on a daily basis overwhelm us...if you know someone on the spectrum, you understand when I say, you know autism when you see it. Like the symptoms of many disorders, u try hard enough to see them in yourself (or someone else),& you probably will. But it's the intensity and disabling effects that makes it a disorder. One can be treated and become functional. But if you are obsessed with a subject, or are clumsy, that doesn't mean you are autistic. If you are completely obsessed with a subject and neglect other things in life because of it, and can not talk about much else or stop yourself from talking about it even when people beg you to, or you can't ride a bike at 9 yrs old, have difficulty holding a pencil to write,ect, you might be on the spectrum, and should talk with a professional.
A little knowledge is a dangerous thing they say. The worst part about assuming all these people have Autism or Aspergers is that those who really do have it suffer for these misconceptions. Hard enough to try and get others to understand that someone who looks normal and is intelligent really can't always control himself or problem solve well, that he's not a mean bully just because he can't recognize how others feel or thinks, etc. The more the people keep hearing that so-and-so is probably on the spectrum, they will start to believe it's not a real disablity again and we'll be back where we started. I have spent 9 years trying to get my son teachers and caregivers that understand his problems and behaviors that are related to Autism..the hardest part was getting people to believe he really couldn't always control how he acted or didn't understand situations correctly or was overstimulated...some never did believe it and he was repeatedly disciplined and labelled a bad boy until he believed it himself. He is finally in an excellent school with a well educated staff (we drive over 50 miles daily to take him there and back) and starting to make real progress, gain back some self-esteem, and even making friends! I will fight like a mama bear before I let idiots take that all away!
If you hear misconceptions about autism, take the time to educate (and maybe tehy should a degree before they diagnose others again).

michaeledits said...

Which is trendier, being part American Indian or being somewhere on the autistic spectrum?