Tuesday, July 24, 2007

AS in Adults

Very interesting article in USA Today, by Suzanne Leigh, about diagnosing Asperger's Syndrome in adults. Be sure to check out the comments. This quote is sure to generate some response:
"Almost by definition, an Asperger's person would not form an intimate relationship, get married and have children," says research scientist Katherine Tsatsanis of the Yale Developmental Disabilities Clinic. "They don't form connections. The desire, the drive and the social knowledge is lacking."

The doctors quoted in this article have posted a disclaimer on their website. They say they were misquoted.


Jayne Deaux said...

That article is the most amazing piece of b.s. I've come across in a long time. What kind of rock have those researchers been living under? Have they ever met anyone with Asperger's?? It is well-known, amongst those of us who can READ, that people with Asperger's DO desire intimate relationships. Just because they lack social skills doesn't mean they lack the desire.

There are plenty of examples of people with this condition who marry or date. What about Jerry Newport who inspired the movie "Mozart and the Whale"? What about Danile Tammet who has a life-partner?

I'd really like those worhtless researchers to meet my son with Asperger's who is the most affectionate child anyone could hope to meet. Of course, I wouldn't want him to be affectionate with them-- they deserve a kick in the pants.

aspieprincess said...

I have to agree with Jayne Deaux about the quality of this article. In addition, I was deeply disturbed to find Kathy Marshack listed as a top expert in this article. As a person with Asperger's myself, I was very excited to see a new book coming out on Asperger's, so, a few months ago, I made the monumental mistake of reading the advance chapter of her new book on Asperger Syndrome, "A Sliver In My Mind." I found the chapter one of the most hateful bits of writing I've ever read about people with AS, despite that apparently Dr. Marshack has a daughter with Asperger's.

While I don't dispute that it isn't always easy living with us, and some of the scenarios she describes are possible of someone on the lesser functional end of the spectrum, to paint this as the normal state of all aspies does us all a great disservice.

It is very clear that Dr. Marshack has a bias against aspies. And I consider it very irresponsible for a professional to broadly paints an entire group of people as "self-centered, thoughtless, unreasonable, demanding and when angered . . . verbally abusive."

It is certainly clear that she lacks any sympathy for what we deal with on a daily basis, and is not open to the possibility that we can learn and are not all like this. A balanced therapist should be able to see both sides of the equation, in all her writing, it's extremely clear that her point of view is one-sided.

Somehow, she manages to infantilize us and demonize us at the same time. She states that the spouse will have "have to do all of the work in the relationship" - being in a relationship myself and knowing many others I can tell you that is NOT the truth. From my own life, and from the Asperger community online, I can tell you that there are many people with Asperger's who "do the work" to try to connect with others. And it can be very hard work:

Some other quotes:
"Living with an Asperger’s mate is like being permanently on LSD."

"The bottom line is that if you are living with an Asperger’s mate or child or parent, you feel trapped. You might even feel as if you are in prison."

She describes her feelings while treating a person with Asperger's as follows: "Unnerving, unsettling, those are the words that describe my feelings."

In her sample chapter 5, while she refers to a "normal" or NT wife as a "rose on an emotional desert," she refers the the husband with Asperger's as "the thistle." Her stated purpose is to help the world learn to live with "these people" as she calls people Asperger's.

To read for yourself, go to:
Chapter 1
Chapter 5

A reputable paper such as USAToday would have been better off interviewing people such as Temple Grandin, Tony Attwood, and Mary and Jerry Newport.

Instead of the profoundly biased and negative "A Sliver in My Mind: Loving Those With Asperger Syndrome ," they would have done well to read Maxine Aston's books "The Other Side of Asperger Syndrome," and "Aspergers in Love: Couple Relationships and Family Matters." Instead of sensationalizing how "horrible" it is to live with "those people," these books realistically describe the challenges experienced on both sides of the equation and provide solutions for how to have a successful relationship.

Rather than Dr. Marshack's stated mission for her book - to teach the "normal" person to "navigate this world...Once you know the territory, you can choose to stay or leave . . . at will. That is important. That is freedom." Ms. Aston's book "frankly examines the fundamental aspects of relationships that are often complicated by the condition" and states that "people with AS can and do have full and intimate relationships" (quoted from the back cover, italics mine).

While Dr. Marshack's book paints life with an Asperger mate as something to be endured, Ms. Aston's book compares and contrasts the Asperger and NT point of view, and shows how these can create misunderstandings. Through real life case studies, she shows how these can be sorted out.

I am very disappointed that the author of this article did not find better sources. This kind of coverage hurts, not helps, the understanding of people with Asperger's. I pray they make better choices in the future.

Chris said...

Thanks for commenting. I hope USA Today got an earful over this one!