I had Asperger Syndrome. Briefly.
That is the title of an interesting NY Times opinion piece:
The authors of the next edition of the diagnostic manual, the D.S.M.-5, are considering a narrower definition of the autism spectrum. This may reverse the drastic increase in Asperger diagnoses that has taken place over the last 10 to 15 years. Many prominent psychologists have reacted to this news with dismay. They protest that children and teenagers on the mild side of the autism spectrum will be denied the services they need if they’re unable to meet the new, more exclusive criteria.
But my experience can’t be unique. Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome.
This reminded me of a close friend. He struggled with severe shyness and blamed much of it on his mother's paranoid schizophrenia. Apparently he was not cuddled much as a child and he once told me that one of his strongest early memories was being forced by his father to give his mother a hug and his mother sadly saying "It's OK, Don't force him." He couldn't explain his fear but assumed it was because he somehow sensed that his mother was different. It is natural to do that sort of thing don't you think? Not long ago, however, he remarked that maybe it wasn't his mother's fault after all. Maybe he had Asperger's syndrome and no one knew it. I don't know him well enough to say if he has Asperger's syndrome, but, if so, it seems to me that he has overcome it fairly well. I suppose behavior always comes up against that nature versus nurture discussion but I would be interested in your thoughts.
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Jun '10
Re: I had Asperger Syndrome. Briefly.
Anthony Kaiser
I have to mildly disagree. A diagnosis can lead one to behavioral techniques and medications that can make life a lot less stressful.
A diagnosis can also let the in-laws (and others) know that it isn't (just?) bad parenting.
Diagnosis for diagnosis' sake is pointless. But when it leads to a deeper understanding of the deficits and also leads to more effective ways of relating and responding to your child, I'd say it is well worth it.
It isn't about defining my child by his limitations, but understanding the possibility of limitations and trying to compensate in other ways. It's about realizing that sending that fledgling from the nest may be a little more difficult and a little more scary. But mostly it's about wanting that child to reach his full potential and doing whatever is necessary--yes, even accepting GOVERNMENT SERVICES provided by the education system (as imperfect as it is)--to help see that happen.
Are autism spectrum disorders overdiagnosed? Maybe so. Is there an element of quackery in discussions of cause and treatments? In my opinion, yes. But neither of those factors mean that the condition does not exist.
Nov '10
Re: I had Asperger Syndrome. Briefly.
I've got Tourette's Syndrome. Never lost a moment's sleep over it. Some do, but for me 99% of the time it's merely cosmetic. Like Asperger's and a multitude of related disorders it sits on a spectrum. In my case, moderate to mild. Don't know how I would handle it if it were severe. Don't have any inclination to ask some agency to fund me; it's just a cross to bear.
Which is my point. There is a whole range of "disorders" that are not disabilities simply on the basis that they have a name and are studied in medical or psychiatric research. Some people with these disorders need intervention; the vast majority don't, or need mild and inexpensive therapy. Like calling Pluto a planet (or not), who cares, really, if the name is used? What matters is that those needing help ... get it, and those that don't ... are left alone.
Dec '10
Re: I had Asperger Syndrome. Briefly.
I've read the proposed changes, and I don't see a problem with them. Tightening the definition is a good idea because it is probably over diagnosed. From a public policy standpoint, it will assure that the limited resources available to autistics actually go to those that really need them. Also, I have a theory that government aid such as Social Security may actually enable some of the bad behaviors. My high functioning autistic stepson, for instance, has a low tolerance for other people in general, but he can tolerate them. I think that he could hold down a regular job, if he is convinced that tolerating his boss is worth the effort. If the government gives him a SS check because tolerating his boss is harder for him than the average person, he'll take the check.
Apr '11
Re: I had Asperger Syndrome. Briefly.
Anthony Kaiser
iWc: Asperberger's is a great way to define a person by their limitations instead of their possibilities.
These diagnoses almost invariably cause more harm than good. · 24 minutes ago
High functioning autistics have unique perspectives and intense dedication. I suspect that many of our great advances came from them. · 1 hour ago
Indeed. Seems luminaries such as Isaac Newton and Albert Einstein may have been autistic.
Jan '11
Re: I had Asperger Syndrome. Briefly.
Drew is right, in comment #1 - the entire argument is about classification for external agencies (whether they be public or private). Generally well-intentioned people in health care do this constantly - distort the rules and definitions to achieve an end result (generally some funding for someone they judge to be deserving). I've been offered this "service" myself, for me and my family ("look, if I classify your daughter as xxxxx, you'll get subsidized prescriptions").
But then the subsequently distorted statistics are used to justify further funding, and the cycle is self-perpetuating. It's part of the reason for the recent statistical explosions in asthma, autism etc. It also played a role in the African AIDS epidemic.
Jun '10
Re: I had Asperger Syndrome. Briefly.
Mr. Martyr - What evidence do you have on distorted statistics? I don't disagree that some children don't require mood stabilizing neuroleptics to deal with aberrant behavior but you are positing that the availability of government-sponsored healthcare, medicine and therapy, here and around the world, is causing the epidemic increase in the number of cases of those on the Autistic spectrum. I'm not aware of any studies that draw that conclusion.
I am the parent of a severely Autistic child and I can assure that my wife (now divorced) and I (and others like us) were not simply looking for some sort of government handout to deal with a child that was detached and non-communicative but rather looking for any help and guidance from any quarter for a child who in fact that had a severe neurological and brain development disorder.
When my son was diagnosed at about 18 months, hearing the word "Autistic" was like a knife stab to the chest. For weeks I was in denial and thought the experts must have been wrong that it was a hearing problem or some other problem that was causing his detached behavior and loss of speech.
May '10
Re: I had Asperger Syndrome. Briefly.
I was diagnosed with Aspergers when I was 25. I can be sure of the diagnosis largely due to physical symptoms, like exaggerated senses of touch and hearing (the latter, thankfully, is offset by an excess of wax).
Did diagnosis help me? Yes and no.
First, it helped me to understand that my many oddities are really only one oddity. It's easier to accept myself that way. Perhaps it's easier for others to accept me that way, too.
Second, experts make my symptoms believeable to many. People are reluctant to believe things they can't see or understand, like how heat and cold hurt me at relatively moderate temperatures. You'd be surprised how many common interactions such a limitation interrupts, complicates or prevents. Though I don't mind people knowing I have AS, I try not to mention it these days unless I need to. As a man, I don't like being seen as weak in any way. But sometimes it is necessary. Then, I can point to words of medical professionals and say, "See? It's real."
But that's about it. Ultimately, I just have to suck it up and adapt. (continued...)
May '10
Re: I had Asperger Syndrome. Briefly.
After I was diagnosed by my sister's psychiatrist (she is bipolar — disorders run deep in my ancestry), I read this book about AS. As I wrote in a review:
It's easy for people to look at someone with no legs and know how to adjust their expectations of that person. Someone might look at me and notice something odd, but they don't know my limitations and I can't explain them (and there are many) in a few minutes. Citing Aspergers or even autism doesn't generally help.
What's more, people with AS, like any other human beings, should make sacrifices for other people. Even cripples can be charitable. We should be patient and forgiving.
May '10
Re: I had Asperger Syndrome. Briefly.
I'm infinitely better now than I was as a kid. Aspies are often indistinguishable from normal folks by the time they reach 25 or 30 because they have adapted. Outwardly normal.
The main challenge of Aspergers is that something about our unusual brain formation forces us to learn consciously what most people learn intuitively — social communication and the value of social rituals which seem silly at first glance.
For example, to this day, I don't understand perfumes and colognes. The main odor in any of them is alcohol. Perfumes were used through most of history because people didn't bathe or wash their clothes. Alcohol is pungent, so it covers bad odors. Why not just spray whiskey on yourself? Anyway...
Most literature on AS is focused on children, and it should be. When I was a kid, it wasn't being teased as "adopted" by family or "crazy" by friends that really bugged me. It was being unable to interact socially, and physically, when I wanted to.
There's a great saying that "youth is wasted on the young." Perhaps understanding my condition at a younger age would have helped me live more fully when opportunities abounded.
May '10
Re: I had Asperger Syndrome. Briefly.
Brian Watt:
When my son was diagnosed....
Brian, I already knew you your son was autistic (moreso than I am, as I recall), but I would like to offer one bit of advice.
I have only shaken my dad's hand since I was a small boy (hugging another man feels weird). I have nephews and nieces now whom I love. But even now that the oldest is four years old, kissing any of them on the cheek, even my tiny baby niece, is awkward. I'm still not comfortable expressing affection.
Anyway, I hope you and your wife will keep in mind that your son's weak displays of affection do not demonstrate a weak love for you both. An autistic person's love is perhaps more intellectual than that of most folks, but it's there all the same.
The same for any other Ricochetians who might have autistic family members.
Jun '10
Re: I had Asperger Syndrome. Briefly.
Aaron - Thanks so much for your comments.
I think too often it's easy for those who aren't close to someone with AS or someone elsewhere on the Autistic spectrum to make generalizations or be dismissive about the scope of what is actually occurring.
Sorry, to any of those who may think that the increases in AS and Autism in general is simply attributable to the lack of proper diagnoses in the past. I'm not buying that. Just as I'm not buying that the increase in cases is attributable to lazy parents who just want medications to help manage children who are discipline problems.
I went to six different grade schools growing up in the 60's as my family moved all around California and observed numerous neighborhoods and communities and never recalled seeing the number of kids afflicted with these disorders that are evident today.
Jun '10
Re: I had Asperger Syndrome. Briefly.
Aaron Miller
Brian Watt:
When my son was diagnosed....
Brian, I already knew you your son was autistic (moreso than I am, as I recall), but I would like to offer one bit of advice.
I have only shaken my dad's hand since I was a small boy (hugging another man feels weird). I have nephews and nieces now whom I love. But even now that the oldest is four years old, kissing any of them on the cheek, even my tiny baby niece, is awkward. I'm still not comfortable expressing affection.
Anyway, I hope you and your wife will keep in mind that your son's weak displays of affection do not demonstrate a weak love for you both. An autistic person's love is perhaps more intellectual than that of most folks, but it's there all the same.
The same for any other Ricochetians who might have autistic family members.
Thanks for that. I do realize it's difficult for my son to display affection but every once in a while if I'm too quiet myself he will walk up to me and put a reassuring hand on my shoulder. That communicates volumes.
Jul '11
Re: I had Asperger Syndrome. Briefly.
Wow, what incredible and motivational testimonies here. I have seen AS kids grow up to have rich lives but never seen it articulated so well in an adult as your story Aaron. Brian I am convinced the incidence in those diagnosis are increasing as well. I do think lack of diagnosis in past for Autism and the push for ADHD medications in AS did play a role in the increased numbers though. When a diagnosis gets paid for it is easier to use for treatment justification, some of which is desperately needed.
Jun '10
Re: I had Asperger Syndrome. Briefly.
Aaron, Brian: Thanks for sharing. I very much value your insight on threads like these.
Jun '10
Re: I had Asperger Syndrome. Briefly.
Thanks, Jim. Happy to share some personal perspective. Just don't want folks to lose sight of the human aspect of issues like these and focus solely on the numbers, the excesses of gov't programs and how some 'game' the system.
There are hundreds of thousands of kids, young adults and adults on the Autistic spectrum and the numbers appear to be growing. If they continue to grow no matter how the DSM5 narrowly defines the disorders then obviously something, or a combination of external factors in the environment, is triggering these cases.
Having met and come to know other sincere parents with Autistic kids my sense is that there are more who are engaged in the frustrating struggle with doing whatever they can to help their children, sometimes to the point of going broke; sometimes to the point where marriages break up.
If they take advantage of state programs (Regional Centers and the like) that they've funded for years through taxes in order to help and/or hopefully mainstream their kids - can you blame them? Would I prefer that I had the financial wherewithal to fund all this on my own? You bet...and working on it.
Jun '10
Re: I had Asperger Syndrome. Briefly.
A mother and her son express their thoughts about the coming reclassification changes for Asperger's Syndrome in the DSM-5 here.
And this is Autism Speaks first official response on the new reclassification.