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“Healing Autism: No Finer a Cause on the Planet”

December 17, 2001 News Morgue Search www.feat.org/search/news.asp

BULLETIN: Good News in New Jersey

Geoff Dubrowsky called in from the Statehouse in Trenton to say that our bill, S-1133 for Autism Research in NJ, passed the Senate, 26 to zero! (Several Senators were absent for the vote or abstained.) The bill appropriates $1.5 million for each of five years for autism research at UMDNJ. Geoff also met with Gov. DiFrancesco’s staff person who indicated that we shouldn’t run into any problems with the Governor signing the bill.

Geoff will be following up on the status of the

signing. Please also note that Governor-Elect

McGreevey has the ability to veto any spending

legislation passed just before his term starts

(which is Jan 15^th). We are also taking steps to

ensure Gov-elect McGreevey’s support for S-1133

· Sallie Bernard of Safe Minds and CAN

AWARENESS

· Take the AQ Test

· Think Different?

Take the AQ Test

[This is a sidebar to “The Geek Syndrom” article in Wired magazine.

Commentary to follow.]

Psychologist Simon Baron-Cohen and his colleagues at Cambridge’s Autism Research Centre have created the Autism-Spectrum Quotient, or AQ, as a measure of the extent of autistic traits in adults. In the first major trial using the test, the average score in the control group was 16.4. Eighty percent of those diagnosed with autism or a related disorder scored 32 or higher. The test is not a means for making a diagnosis, however, and many who score above 32 and even meet the diagnostic criteria for mild autism or Asperger’s report no difficulty functioning in their everyday lives.

1 I prefer to do things with others rather than on my own.

Definitely Slightly Slightly Definitely

Agree Agree Disagree Disagree

1() 2() 3() 4()

2 I prefer to do things the same way over and over again.

1() 2() 3() 4()

3 If I try to imagine something, I find it very easy to create a picture in my mind.

1() 2() 3() 4()

4 I frequently get so strongly absorbed in one thing that I lose sight of other things.

1() 2() 3() 4()

5 I often notice small sounds when others do not.

1() 2() 3() 4()

6 I usually notice car number plates or similar strings of information.

1() 2() 3() 4()

7 Other people frequently tell me that what I’ve said is impolite, even though I think it is polite.

1() 2() 3() 4()

8 When I’m reading a story, I can easily imagine what the characters might look like.

1() 2() 3() 4()

9 I am fascinated by dates.

1() 2() 3() 4()

10 In a social group, I can easily keep track of several different people’s conversations.

1() 2() 3() 4()

11 I find social situations easy.

1() 2() 3() 4()

12 I tend to notice details that others do not.

1() 2() 3() 4()

13 I would rather go to a library than to a party.

1() 2() 3() 4()

14 I find making up stories easy.

1() 2() 3() 4()

15 I find myself drawn more strongly to people than to things.

1() 2() 3() 4()

16 I tend to have very strong interests, which I get upset about if I can’t pursue.

1() 2() 3() 4()

17 I enjoy social chitchat.

1() 2() 3() 4()

18 When I talk, it isn’t always easy for others to get a word in edgewise.

1() 2() 3() 4()

19 I am fascinated by numbers.

1() 2() 3() 4()

20 When I’m reading a story, I find it difficult to work out the characters’ intentions.

1() 2() 3() 4()

21 I don’t particularly enjoy reading fiction.

1() 2() 3() 4()

22 I find it hard to make new friends.

1() 2() 3() 4()

23 I notice patterns in things all the time.

1() 2() 3() 4()

24 I would rather go to the theater than to a museum.

1() 2() 3() 4()

25 It does not upset me if my daily routine is disturbed.

1() 2() 3() 4()

26 I frequently find that I don’t know how to keep a conversation going.

1() 2() 3() 4()

27 I find it easy to ‘read between the lines’ when someone is talking to me.

1() 2() 3() 4()

28 I usually concentrate more on the whole picture, rather than on the small details.

1() 2() 3() 4()

29 I am not very good at remembering phone numbers.

1() 2() 3() 4()

30 I don’t usually notice small changes in a situation or a person’s appearance.

1() 2() 3() 4()

31 I know how to tell if someone listening to me is getting bored.

1() 2() 3() 4()

32 I find it easy to do more than one thing at once.

1() 2() 3() 4()

33 When I talk on the phone, I’m not sure when it’s my turn to speak.

1() 2() 3() 4()

34 I enjoy doing things spontaneously.

1() 2() 3() 4()

35 I am often the last to understand the point of a joke.

1() 2() 3() 4()

36 I find it easy to work out what someone is thinking or feeling just by looking at their face.

1() 2() 3() 4()

37 If there is an interruption, I can switch back to what I was doing very quickly.

1() 2() 3() 4()

38 I am good at social chitchat.

1() 2() 3() 4()

39 People often tell me that I keep going on and on about the same thing.

1() 2() 3() 4()

40 When I was young, I used to enjoy playing games involving pretending with other children.

1() 2() 3() 4()

41 I like to collect information about categories of things (e.g., types of

cars, birds, trains, plants) .

1() 2() 3() 4()

42 I find it difficult to imagine what it would be like to be someone else.

1() 2() 3() 4()

43 I like to carefully plan any activities I participate in.

1() 2() 3() 4()

44 I enjoy social occasions.

1() 2() 3() 4()

45 I find it difficult to work out people’s intentions.

1() 2() 3() 4()

46 New situations make me anxious.

1() 2() 3() 4()

47 I enjoy meeting new people.

1() 2() 3() 4()

48 I am a good diplomat.

1() 2() 3() 4()

49 I am not very good at remembering people’s date of birth.

1() 2() 3() 4()

50 I find it very easy to play games with children that involve pretending.

1() 2() 3() 4()

How to score: “Definitely agree” or “Slightly agree” responses to questions 1, 2, 4, 5, 6, 7, 9, 12, 13, 16, 18, 19, 20, 21, 22, 23, 26, 33, 35, 39, 41, 42, 43, 45, 46 score 1 point. “Definitely disagree” or “Slightly disagree” responses to questions 3, 8, 10, 11, 14, 15, 17, 24, 25, 27, 28, 29, 30, 31, 32, 34, 36, 37, 38, 40, 44, 47, 48, 49, 50 score 1 point.

* * *

COMMENTARY

A Contest to Pin the Label on the Dorky

On Not Trivializing Autism

By Lenny Schafer

It is not possible to “meet the diagnostic criteria for mild autism or Asperger’s” as this reporter states, and have “no difficulty functioning…”. The defining crux of Asperger’s is not savantism, nor social ineptitude, nor idiosyncratic behavior. What defines Asperger’s at its foundation is disability. To be “less disabled” than the rest of the autism spectrum is still to be disabled. If one has “no difficulty functioning,” one is, in other words, not disabled. In this case, you may be “geeky,” but you are not Asperger’s. This trivializing of autism is the same trivializing some disability agencies and school districts use to justify denying children with Asperger’s remedial assistance - no thanks to such promotions by psychologists Tony Attwood, Simon Baron-Cohen and his colleagues at Cambridge and elsewhere.

What is needed here is a separate label for those not on the autism spectrum, who are not disabled, yet who display quasi-Asperger’s characteristics. Something a little less dorky than “geek” or “nerd.” One suggestion is “Latent Autistic Personality Syndrome” or LAPS.

The FEAT Newsletter is now accepting suggestions for such a label from our readers, parents or professionals. Send it to FEAT@feat.org. We’ll pick the best one(s) and submit it to the American Psychology Association for adoption. This will help resolve the blur between Asperser, Autism and the neurotypical – a clarification that serves the needs of our children.

>> DO SOMETHING ABOUT AUTISM NOW <<

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* * *

Think Different?

Autism researcher Simon Baron-Cohen on “mindblind” engineers, hidden pictures, and a future designed for people with Asperger’s.

Interview by Oliver Morton.

[This is in the same issue of Wired magazine as “The Geek Syndorme”,

reprinted here in a previous post.]

http://www.wired.com/wired/archive/9.12/baron-cohen.html

Sally has a marble. She puts her marble into the box, and then she goes outside. Anne comes in, takes the marble out of the box, and puts it in her basket. When Sally comes back, where will she look for the marble?

By the age of 4 or so, most children who watch this scenario played out by puppets - including children with Down’s syndrome and other developmental problems - know the answer. But some do not. They do not understand that what they know and what Sally knows are different, that Sally has a mind of her own. The children who expect Sally to look in the basket, because they know that’s where the marble is and can’t believe that she doesn’t, are the ones likely to be diagnosed with autism or its relative, Asperger’s syndrome.

Simon Baron-Cohen, a tall, soft-spoken clinical psychologist at the University of Cambridge, has spent two decades studying autism - how to help the people disabled by it and what the syndrome tells us about normal minds. Baron-Cohen is interested in the brain and in genes (his group at Cambridge is collaborating with geneticists in new studies of Asperger’s syndrome), but his key interest is in minds: their workings, their malfunctions, their origins, and their care.

From the beginning, his work has been centered around what’s called a theory of mind - that is, an innate ability to understand other people as having feelings, intentions, and pictures of the world that are not the same as our own. A theory of mind is a basic requirement for empathy or, for that matter, deceit. And according to an approach to autism that has become increasingly influential in Britain over the past decade or so, a theory of mind is what people disabled by autism and its related conditions lack. They are, in Baron-Cohen’s nicely coined word, “mindblind.” More recently, Baron-Cohen has looked at another aspect of the autistic mind: a proclivity for systemizing - for understanding and constructing rules-based systems to explain our experience. To understand the social world, such rules are a poor replacement for a theory of mind; to understand the natural world, they are very useful.

It is another focus of his research, though, that has made Baron-Cohen an occasionally controversial figure. In 1997, he and his colleagues looked for and found some evidence of a link between autism in children and a propensity for engineering in their parents. Further work with students at Cambridge has suggested that engineers, mathematicians, physicists, and computer scientists have a way of thinking that is quantifiably “more autistic” than that of their peers in the humanities, arts, and social sciences. To some, this sounds like a medicalized stigmatization of nerdiness. Others fear that linking children’s disabilities to their parents’ inclinations is a new way of blaming the parent. Baron-Cohen rejects this. He argues that linking the styles of thinking that society has come to value is helpful, not harmful. Minds come in different shapes just as bodies do, and we must learn to accept that. Indeed, we must learn to value it.

Wired: How common is autism?

Baron-Cohen: Current studies suggest that the incidence is about 1 in 200 children for all disorders in the autism spectrum. That’s much, much higher than the textbooks quote: Textbooks say 4 in 10,000.

Why the gap?

It’s probably due to growing public awareness. Also, we’re now looking for children at the higher end of functioning, children with autism who have normal intelligence. In the past we tended to look in special schools or in child psychiatric clinics for children with learning disabilities and a range of other problems; nowadays we look in the community at large.

Is there a danger that broadening the definition of autism might trivialize the problems of those with profound disabilities, equating a severe disorder that requires lifetime care with something much milder?

A PhD student with Asperger syndrome might be just as disabled as a person with learning disabilities and classic autism. Both may end up in need of considerable support, though of different kinds. The people being diagnosed at a rate of 4 in 10,000 needed more clinical support than the 1 in 200 diagnosed today. But I’d be hesitant to say that those cases were more severe.

Autism spectrum disorders are linked to other problems: Most of the people we see in our Asperger clinic for adults also suffer from clinical levels of depression. At any point on the spectrum, a diagnosis of Asperger is only given if the symptoms are causing a significant impairment to how someone functions. So “mild” cases, which don’t really interfere, should not be diagnosed at all.

You argue that people with autism lack an innate capacity to draw inferences about what others know or think or feel - a “theory of mind.” Is this ability separate from the ability to think about the world in general?

One of the papers I’ve written with colleagues describes three individuals who have Asperger syndrome. One won the Olympiad in physics and math right through his teens, and when presented with a physics or math problem he could solve it very, very rapidly. Yet he couldn’t decode facial expressions of emotion in photographs. The second was a professor of mathematics, the winner of the equivalent of the Nobel Prize for math, the Fields Medal. No difficulties at all in abstract reasoning, but given photographs of facial expressions that somebody without any mathematical ability could read easily, he performed significantly below the average level. The third example was a computer scientist who could write programs without any effort at all, but again, just looking at a face, he couldn’t tell what a person was feeling. It can’t be a general problem that’s affecting the mind as a whole. It must be a specific deficit.

Lenny Schafer, Editor@feat.org • CALENDAR EVENTS@feat.org Michelle Guppy

Catherine Johnson PhD • Ron Sleith • Kay Stammers • Edward Decelie

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