Asperger's Syndrome

All very familiar... I'm a third generation Aspie (got it from my mother) and father of five Aspie kids (all adults).

I'm always intrigued by the disconnect in parents with Aspie children: it seems to rarely occur to them to be screened themselves for ASx. I'm interested to know if it simply doesn't register or if it's a form of denial or something else. It's a genetically-transmitted condition. Your child got it from one or other parent -- or, more and more often, especially in Aspie enclaves like Silicone Valley, from both.

And how often does it register with people affected by other neurological disorders, especially neurofibromatosis, that there could be a connection with other neurological conditions, especially ASDs?

by JohnCounsel (0 articles, 0 quicklinks, 0 diaries, 1 comments) on Sunday, September 21, 2008 at 12:15:55 PM
 

Absolutely Right On

Thanks for your comment.  I'm certain that many adults with Aspie kids have traits on the spectrum themselves; I'm pretty sure I do.  What might cause the kind of "denial" you mention is that, one, these adults got no feedback as kids and just assumed they were weird and learned to compensate well enough to "make it" in the real world.  Two, Asperger's is increasing exponentially in the population, for reasons that psychiatrists and psychologists have not been able to pin down, and those of us who are parents now may not realize that it's been around for a long time. 

In all my research I have read that Asperger's seems to be genetic, coming more frequently from the father's side of the family, but women and girls definitely can have Aspie's.  Because of the different way we are gender-socialized as kids, it is harder to diagnose in girls.

I highly recommend any of Tony Attwood's books, as he is one of the current leading authorities on Asperger's.  

by Debbie Scally (3 articles, 0 quicklinks, 0 diaries, 70 comments) on Sunday, September 21, 2008 at 2:14:15 PM
 

Excellent piece

Receiving a diagnosis of Asperger's in my 30's explained a lot about my problems socializing and not being able to fit into the world.  Unfortunately, my parents do not believe the diagnosis since I am too similar to them.  I consider this lack of accepting a medical diagnosis abuse.

People with Asperger's who are shy and have these types of parents are likely to have an unknown condition called LOVE-SHYness, which is a phobia of romance and mating.  Unfortunately, Asperger's and shyness mask this condition. Google the term for the wiki and other articles.

by Donald Biddermax (0 articles, 0 quicklinks, 0 diaries, 4 comments) on Sunday, September 21, 2008 at 5:21:52 PM
 

not quite accurate

I would be wary of anyone supposedly specializing in Asperger's Syndrome who tells you your child is "a 4-5 on the spectrum" and that "his diagnosis was probably missed because his cognitive level was so high."

First of all, there's no such thing as a "4-5" on the spectrum. Someone either has Asperger's or he doesn't. There is definitely a spectrum within a spectrum in AS--meaning all kids with this diagnosis are not exactly the same--but there is no "grading" system for this (unless invented by your child's doctor).  

Secondly, it's doubtful your child's diagnosis was missed because his "cognitive level was so high." In order to be diagnosed with AS, a person must be of average to above-average intelligence. Most people with AS are highly intelligent, which is why, as you mention, Hans Asperger called them "little professors." More than likely, your son was not diagnosed earlier because AS was little known, even by pediatricians and school psychologists, until very recently. In fact, AS has only been a classification in US public schools since 1994.

Many kids with AS, and your son may be one of these, fly under the radar if they are not having behavior problems in school. Many children your son's age--those who struggled to sit still in class, melted down frequently, or were generally "annoying" in school--were initially diagnosed with ADHD or ADD in the 1990s, and have only recently been more accurately diagnosed with Asperger's. 

I would guess your son's AS was not caught earlier because he was quiet, got good grades, and did not disrupt the classroom. This is the same reason many girls with AS are not diagnosed. If they don't stand out, nobody realizes something is wrong. Often it all comes crashing down in middle school, when the social scene become more complex, and teasing and bullying become more intense. 

by Bunny (0 articles, 0 quicklinks, 0 diaries, 2 comments) on Sunday, September 21, 2008 at 4:56:41 PM
 

4-5 on the spectrum

Perhaps I was not clear enough about my son's first evaluation.  His psychologist was basing his diagnosis on many things: behaviors, speech patterns, eye contact, responses to questions, even the way he sat or held his body in balance during the session. She has worked with Aspie kids for 13 years and the 'spectrum' she's talking about is the entire Autism spectrum as she has worked with it.  Therefore, she determined that out of all possible places on that spectrum he came out at around a 4-5.  It is certainly true that Asperger's Syndrome is still relatively "new" as a condition listed in the DSM-IV, but 2 other doctors he went to didn't even know what the condition was.  Yes, he made good grades; no, he was not a troublemaker per se unless you call my being in the counselor's office more than once a week because he was being bullied making trouble or he was correcting the teacher's mistakes on his tests! Aspie's are, as you say, usually very bright people.  

As per "cognitive level," that is her term based on how he interacted with the other young men in his group, all of who are a few years older than he is.  Perhaps I am using the term wrong.  Thanks for the information. 

by Debbie Scally (3 articles, 0 quicklinks, 0 diaries, 70 comments) on Sunday, September 21, 2008 at 5:25:04 PM
 

not always AS

This whole "4-5" thing must just be something your particular psychologist created. There is no such a "rating" I know of for the autism spectrum.

When you say two doctors didn't even know what Asperger's Syndrome was, do you mean pediatricians/GPs? The average physician generally doesn't diagnose or treat neurological disorders, and if a parent is concerned, that parent is generally referred to a developmental pediatrician or a pediatric neurologist. It's up to the parent to chase this kind of referral, because most GPs don't spend enough time with your kid to notice anything wrong, and tend to tell you to "wait and see" what develops over time, etc. 

One reason that some people--your husband, perhaps--have trouble accepting a child's AS diagnosis is that sometimes children who are highly intelligent or "academically gifted" are misdiagnosed as having Asperger's Syndrome. If your son makes eye contact, gets top grades, and is bullied simply for being a "brain," he may not actually have AS. Kids with AS tend to, for example, talk on and on about their topic of choice w/o caring if anyone is listening or cares to listen. They also tend to have major sensory issues, like problems with sound, taste, texture, clothing, etc. Meltdowns are an obvious earmark of the disorder, as most kids with AS have low tolerance for frustration and will "lose it" when things aren't going their way, or when they are "overloaded" by the things going on around them.

There are some good books to consult on this subject. One is "The Mislabeled Child," and another is "Quirky Kids." If you check Wikipedia for "intellectual giftedness," you will see a description of something that sounds very much like AS. Sometimes kids who are very smart need to be around other very smart kids in order to fit in socially. Kids with AS can appear rude, blunt, aloof, weird, cold, and selfish (all unintentional, of course), which is why they tend to have social problems. Kids who are gifted (w/o AS) don't always have those issues, but are given the cold shoulder simply because they seem "odd" to the kids who aren't so smart. This is the classic "nerd" situation. Some kids, of course, have AS and are intellectually gifted.

The "cognitive level" your psychologist mentioned probably just means your son is smart. But she could also have been referring to your son's ability to succeed at higher level thinking skills, which is something many on the autism spectrum, including those with AS, can struggle with.  

If your son does have AS, it sounds like it is very mild. Can he drive a car? Has he had a summer job?  

by Bunny (0 articles, 0 quicklinks, 0 diaries, 2 comments) on Sunday, September 21, 2008 at 6:44:01 PM
 

I don't understand...

...why you seem so insistent on questioning whether my son has AS.  I do trust my doctor. The other doctors were psychologists. Yes, his AS is fairly mild. Yes, he makes eye contact. Yes, he has meltdowns and is extremely sensitive to noise, crowds, clothing, whatever. Yes he has difficulty making friends and has been shunned by his peers. No, he does not drive yet. He says he isn't ready.  Does this satisfy your curiosity? 

by Debbie Scally (3 articles, 0 quicklinks, 0 diaries, 70 comments) on Monday, September 22, 2008 at 7:41:00 AM
 

Agree with Bunny

I don't think that Bunny is questioning your son's diagnosis as much as she is questioning your professional experience. I had the very same reaction to your report that he is a "4-5" on the Asperger's spetrum. There is no such thing. Whatever that is, it was made up by your psychologist. I would also be very suprised to find a reputable psychologist who did not know what AS is. A general physican, sure (though they would be reluctant to admit their ignorance) but psychologists should know this stuff. Bunny is right about the doctors who usually treating AS being developmental pediatricians, too.

I also agree with her that there is a great deal of overlap between the problems intellectually gifted children face and kids with AS face.. and that it is not true that "high cognitive ability" would mask an Asperger's diagnosis. All autism without language delay is Asperger's, and Asperger's is by definition normal or above-average intelligence (according to DSM-IV).

by m p (0 articles, 0 quicklinks, 0 diaries, 1 comments) on Wednesday, September 24, 2008 at 3:45:23 PM
 

Good Article

A very interesting article, particularly the extra background on Hans Asperger and his attempts to protect his children.  It's funny how often people want to know about curing the condition without understanding that it carries immense positives as well as the obvious social negatives.

Aspergers isn't a disease to be cured, it's an evolutionary difference. It's not better or worse than our neurotypical children, just different.  It is however something that I believe the human race can benefit from.  The fact that so many of our greatest scientists have been "aspies" cannot be under-emphasised.

Does  it mean that you've got a "little Einstein?" - well, no...  not really. It does mean however that your child has a unique perspective on their world and an incredible drive in the area of their special interests.  It's only when  the combination of these things leads them to become outstanding in a particular field that the genius term gets aired.  One doesn't have to be genius to be special.

by Gavin Bollard (0 articles, 0 quicklinks, 0 diaries, 1 comments) on Monday, September 22, 2008 at 12:00:54 AM
 

Different, not bad

Thom Hartmann's book, The Edison Gene, which focuses on ADHD, could be applied in many ways to Aspies. Yes Thom had a life before Air America that was highly involved with the ADD/ADHD neurobehavioral continuum community, just like me.

by Rob Kall (891 articles, 4057 quicklinks, 350 diaries, 1925 comments) on Monday, September 22, 2008 at 7:41:18 AM
 

Asperger Syndrome

I'm a 22 year old male that has asperger syndrome and reading your well written article reminded me of the experiences I had during childhood. However, I must point out that even though it is true that people with aspergers have a lot of problems socially. It is a skill that can be learned like any other skill with lots of dedication and knowledge. I had limited contact with people during childhood due to very high anxiety and social awkwardness. However, for some reason in my adolescence, my social anxiety has dissipated to average. Now I am able to approach people and socialize, and it is usually hit and miss. Some people cannot detect that I have Asperger because I hide it, while other people notice it after a while. Social skills can be learned by people with asperger and can even exceed normal people in their ability to socialize once the social rules and etiquette are learned via books and most importantly first hand experience, which is communicating with others. It will take several years of constant practice, but I think your son like anyone else with asperger can become a good socializer if given dedication and practice. So long winded speeches about my favourite topic simply don't happen when I talk to others and I can do social chit chat as well because I know the rules, but I am still learning and progressing.  Hopefully, your son can practice his social skills daily and hopefully become adept at it when he is older. :)

by Anthony Brown (0 articles, 0 quicklinks, 0 diaries, 1 comments) on Tuesday, September 23, 2008 at 6:51:38 AM
 

The information you provide is so valuable!

I had heard the term Aspergers and knew that it is somehow related to autism, but not much more until now.
I just love nerds, and I am very lucky to have found a husband that can tolerate one. I must have been eight when I sensed I was about five years behind my peers in terms of social development. I always blamed my problems on being raised as an agnostic in Salt Lake City, and maybe that's all it is, but now I have something else to look into. (Goody!) I was an honor student in chemical engineering, and have finally made some progress socially by training for the priesthood. None of my roommates could stand me. (Am I weird? Yep!)
I'll bet lots of people here in blogsville are Aspies. You can go on and on and no one tells you to stop thinking.
Again, thank you!!!

by Patricia 0rmsby (3 articles, 5 quicklinks, 1 diaries, 166 comments) on Tuesday, September 23, 2008 at 8:14:51 AM