Asperger's diagnosis late in life?
October 6, 2006 7:36 PM Subscribe
Is there any point to an Asperger's diagnosis late in life?
Okay, maybe it's not so late in life (32), but my therapist has suggested that I may have high-functioning Asperger's. Difficulty with talking, words and overall socialness; extreme difficulty with change in routine; isolation; astounding and detailed longterm memory with poor shortterm, etc etc. Which is great and all, but I find it hard to believe that a "fully developed" adult can actually remedy this.
Does anyone else have this "official" diagnosis (rather than being self-diagnosed, though your input is also welcome)? Does someone confront it as a behavioral phenomenon, with cognitive behavioral therapy? A biological one, with antidepressants or "ADD drugs"? At this point, can a treatment do anything besides make the person more comfortable with the condition? I've asked my therapist, but because most medical literature addresses intervention in childhood, he can't say much.
Okay, maybe it's not so late in life (32), but my therapist has suggested that I may have high-functioning Asperger's. Difficulty with talking, words and overall socialness; extreme difficulty with change in routine; isolation; astounding and detailed longterm memory with poor shortterm, etc etc. Which is great and all, but I find it hard to believe that a "fully developed" adult can actually remedy this.
Does anyone else have this "official" diagnosis (rather than being self-diagnosed, though your input is also welcome)? Does someone confront it as a behavioral phenomenon, with cognitive behavioral therapy? A biological one, with antidepressants or "ADD drugs"? At this point, can a treatment do anything besides make the person more comfortable with the condition? I've asked my therapist, but because most medical literature addresses intervention in childhood, he can't say much.
IANAD, or a therapist, but I do know a couple of young men diagnosed as having moderate to severe Asperger's, and because my brother is a schizophrenic, I have a laymen's understanding of related treatments. But I think your therapist is right in saying that the treatment alternatives for adults who may have relatively mild impairments that may be Asperger's Syndrome related are not well studied or documented. People with mild disturbances in the autistic range of diagnostic descriptions, or the schizophrenic, or the bi-polar, often adapt behaviors for a long time, and "get by" in the normal world, even while having some level of nearly continuous problems, if those problems are not immediately debilitating, or of a nature to bring the person into contact with the medical or legal systems.
So, if your impairment is mild, you may have just always been considered "socially awkward" and there may not be any particular medical or pharmaceutical remedy available, that doesn't have side effects or risks greater than the problems you may already have. In that case, your prudent "treatment" alternatives may be as simple as behavioral therapies, behavioral coaching, or group therapy.
In a sense, my brother gets some regular situational behavior coaching any time we go out in public, or travel, and he needs it. Like many schizophrenics, my brother's symptoms are largely controlled by his daily medications, but his symptoms can be exacerbated by such simple things as stress, diet, physical activity level, and the novelty of his environment. On days when his symptoms are more pronounced, and he must still interact with strangers, he has come to look, almost instinictively, to familiar faces for clues about how his behavior is being taken by strangers. This is not so different than perhaps a nervous child looking to his parents for reassurance, but it is a little bit different for strangers, to see it happening with a fully grown man, and that feedback tends to make awkward public situations worse. So, we've kind of developed unspoken signals when it will be "better" if he "lets me do the talking." In those cases, I talk with the stranger, and then, in turn, repeat the question to my brother, who can understand it far better, and respond more confidently to me, than he can directly to the stranger. He will do better in restaurants and other public settings on these days, if he and I sit so that he can readily see my face, and watch me for cues when he needs them. In those situations, he also practices some breathing techniques to reduce his internal stress and anxiety levels, and we try to compensate for additional stress with earlier bed times and more rest.
These kinds of coping strategies are also employed by the families of the young men I know who have Aspergers. One of those young men was treated for some years as a late adolescent with Ritalin, as if he had ADD, and lately has been moved on to a low dosage of an atypical anti-psychotic medication called risperidone, but as far as I know, this is an "off label" use, and the drug has enough potential side effects to only be warranted for significant levels of Asperger's disabilities. So, I suspect that his level of impairment is somewhat greater than yours, anonymous, and since he is in his early 20's his situation also has somewhat greater import for his long term prognosis, in that if his symptoms can't be brought under better control, he will lose work, educational, and social opportunities you may have already had, or passed by.
One thing that has been stressed to me, is that Asperger's people need to work with a psychiatrist or therapist for longer than other people in talk type therapies, because their levels of inter-personal interaction are so poor. It can take many times the hours for an Asperger's person to achieve some desired improvement, as it might for someone with a different non-developmentally based issue, and patience in both the therapist and the Asperger's sufferer is very necessary.
HTH.
posted by paulsc at 9:06 PM on October 6, 2006
So, if your impairment is mild, you may have just always been considered "socially awkward" and there may not be any particular medical or pharmaceutical remedy available, that doesn't have side effects or risks greater than the problems you may already have. In that case, your prudent "treatment" alternatives may be as simple as behavioral therapies, behavioral coaching, or group therapy.
In a sense, my brother gets some regular situational behavior coaching any time we go out in public, or travel, and he needs it. Like many schizophrenics, my brother's symptoms are largely controlled by his daily medications, but his symptoms can be exacerbated by such simple things as stress, diet, physical activity level, and the novelty of his environment. On days when his symptoms are more pronounced, and he must still interact with strangers, he has come to look, almost instinictively, to familiar faces for clues about how his behavior is being taken by strangers. This is not so different than perhaps a nervous child looking to his parents for reassurance, but it is a little bit different for strangers, to see it happening with a fully grown man, and that feedback tends to make awkward public situations worse. So, we've kind of developed unspoken signals when it will be "better" if he "lets me do the talking." In those cases, I talk with the stranger, and then, in turn, repeat the question to my brother, who can understand it far better, and respond more confidently to me, than he can directly to the stranger. He will do better in restaurants and other public settings on these days, if he and I sit so that he can readily see my face, and watch me for cues when he needs them. In those situations, he also practices some breathing techniques to reduce his internal stress and anxiety levels, and we try to compensate for additional stress with earlier bed times and more rest.
These kinds of coping strategies are also employed by the families of the young men I know who have Aspergers. One of those young men was treated for some years as a late adolescent with Ritalin, as if he had ADD, and lately has been moved on to a low dosage of an atypical anti-psychotic medication called risperidone, but as far as I know, this is an "off label" use, and the drug has enough potential side effects to only be warranted for significant levels of Asperger's disabilities. So, I suspect that his level of impairment is somewhat greater than yours, anonymous, and since he is in his early 20's his situation also has somewhat greater import for his long term prognosis, in that if his symptoms can't be brought under better control, he will lose work, educational, and social opportunities you may have already had, or passed by.
One thing that has been stressed to me, is that Asperger's people need to work with a psychiatrist or therapist for longer than other people in talk type therapies, because their levels of inter-personal interaction are so poor. It can take many times the hours for an Asperger's person to achieve some desired improvement, as it might for someone with a different non-developmentally based issue, and patience in both the therapist and the Asperger's sufferer is very necessary.
HTH.
posted by paulsc at 9:06 PM on October 6, 2006
I'm 38 and was diagnosed with it 2 years ago. I think the key thing to remember here is that Asperger's Syndrome is nearly impossible to identify outside of the context of traditional social and cultural settings. The brain is simply wired a bit differently and acts on different sets of cues. You're not defective.
I strongly feel that you may be harming yourself going to any therapist unless they specifically have experience and training in autism and AS. The interpersonal relationship models that most psychologists use are not really applicable to those of us with AS, and you'll find conventional psychologists telling you to read body language, take social cues, and all sorts of things that our brains are not wired for. A good AS therapist will key you in on things that will work.
Stay away from drugs. There's nothing to fix! If you have secondary symptoms such as depression, bipolar, etc, then maybe, but you should make sure you get an opinion from an autism specialist. Social anxiety disorder I think is normal for AS and I don't think you should try to treat that one.
I have a pretty dim view of the ADD connection... I think a lot of it stems from the fact that (1) ADD can be caused by other factors (e.g. real brain damage or parenting factors) and (2) conventional school curricula is not well suited for kids with AS... so ADD is kind of a catch-all. I certainly wasn't very motivated in school and usually did other stuff in class, but I was fine otherwise. For what it's worth, I have tried Ritalin several times as a crutch for those times when I'm overworked and need to deal with family socially... however it doesn't have any noticeable effect at all. That kind of underscores my suspicions about ADD.
I'd strongly, strongly recommend Temple Grandin & Sean Barron's Unwritten Rules of Social Relationships; it's less than a year old and is much more slanted at adults than most AS books. It looks at the "good childhood" of one author and the "bad childhood" of the other author, both with AS, and is really useful for taking a look at yourself and finding strategies for better coping with the "regular" world.
posted by rolypolyman at 11:18 PM on October 6, 2006 [1 favorite]
I strongly feel that you may be harming yourself going to any therapist unless they specifically have experience and training in autism and AS. The interpersonal relationship models that most psychologists use are not really applicable to those of us with AS, and you'll find conventional psychologists telling you to read body language, take social cues, and all sorts of things that our brains are not wired for. A good AS therapist will key you in on things that will work.
Stay away from drugs. There's nothing to fix! If you have secondary symptoms such as depression, bipolar, etc, then maybe, but you should make sure you get an opinion from an autism specialist. Social anxiety disorder I think is normal for AS and I don't think you should try to treat that one.
I have a pretty dim view of the ADD connection... I think a lot of it stems from the fact that (1) ADD can be caused by other factors (e.g. real brain damage or parenting factors) and (2) conventional school curricula is not well suited for kids with AS... so ADD is kind of a catch-all. I certainly wasn't very motivated in school and usually did other stuff in class, but I was fine otherwise. For what it's worth, I have tried Ritalin several times as a crutch for those times when I'm overworked and need to deal with family socially... however it doesn't have any noticeable effect at all. That kind of underscores my suspicions about ADD.
I'd strongly, strongly recommend Temple Grandin & Sean Barron's Unwritten Rules of Social Relationships; it's less than a year old and is much more slanted at adults than most AS books. It looks at the "good childhood" of one author and the "bad childhood" of the other author, both with AS, and is really useful for taking a look at yourself and finding strategies for better coping with the "regular" world.
posted by rolypolyman at 11:18 PM on October 6, 2006 [1 favorite]
Anyway I find I have a few more minutes..... I think the areas you'll need to focus on are, primarily, interpersonal relationships. Manners, courtesies, diplomacy, social conventions, dress, and so forth. Humans generally acquire those things from an early age through socializing, but those of us with AS don't pick up on it as well and often end up with deficiencies. Unfortunately there's no real source of education on these things, and a therapist can only help so much. Temple Grandin made a case that the "old days" were so much better for people with AS because social norms were very clear-cut.
posted by rolypolyman at 11:40 PM on October 6, 2006 [2 favorites]
posted by rolypolyman at 11:40 PM on October 6, 2006 [2 favorites]
Yes, but more for understanding the way you feel and react to some things more than for management/treatment - you've probably already devised strategies to help you to cope. I've found CBT to be very effective (with some people, with some areas of social dysfunction), but as rolypolyman says a specialist therapist is important.
With a diagnosis, it will be easier to access the means of management/treatment, and you also have the protection of the various pieces of (anti-discrimination, provision of social services) legislation should you need it.
paulsc, the psychs I work with have gone waaaaay off rispreridone, and are now far more likely to prescribe aripiprazole or clozapine - the huge weight gain and sexual dysfunction found with risperidone, even on low doses, are kinda counter-productive to assisting people to feel better about themselves.
posted by goo at 4:29 AM on October 7, 2006
With a diagnosis, it will be easier to access the means of management/treatment, and you also have the protection of the various pieces of (anti-discrimination, provision of social services) legislation should you need it.
paulsc, the psychs I work with have gone waaaaay off rispreridone, and are now far more likely to prescribe aripiprazole or clozapine - the huge weight gain and sexual dysfunction found with risperidone, even on low doses, are kinda counter-productive to assisting people to feel better about themselves.
posted by goo at 4:29 AM on October 7, 2006
One other issue is that an official diagnosis makes you legally handicapped, and that may be an advantage in some fields. I know people working for the state who would not have been eligible for promotion if they had not had handicap status. It also means you can ask for "reasonable accomodation" from an employer.
Also, just knowing there is something with a name can help one to develop coping strategies, and give one a useful shorthand for social interactions ("pardon me, I have Asperger's, perhaps you should get someone else to run that meeting?").
posted by QIbHom at 4:54 AM on October 7, 2006
Also, just knowing there is something with a name can help one to develop coping strategies, and give one a useful shorthand for social interactions ("pardon me, I have Asperger's, perhaps you should get someone else to run that meeting?").
posted by QIbHom at 4:54 AM on October 7, 2006
aside from self-awareness, i'm not sure that there is ... the only treatments i'm aware of are self-acceptance and working upon one's social skills ... i'd guess your therapist has already mentioned those issues and probably wants to have you work on them
here's the real issue - what are you trying to change in your life and will an official dx, as opposed to being aware that you probably have it, do anything or create any opportunities to help you change those things? ... if your therapist was to get you certified, what does he have in mind to make it worth your while, what's his plan?
it's not going to be like schizophrenia or depression ... you're ALWAYS going to have it, it's a deeply integrated part of you ... the only thing you will be able to do is to compensate for the disadvantages and learn to utilize the advantages of this ... this is something you may be able to do without a dx ... your therapist needs to have something more in mind than your having a piece of paper saying that you have a s ...
posted by pyramid termite at 5:24 AM on October 7, 2006
here's the real issue - what are you trying to change in your life and will an official dx, as opposed to being aware that you probably have it, do anything or create any opportunities to help you change those things? ... if your therapist was to get you certified, what does he have in mind to make it worth your while, what's his plan?
it's not going to be like schizophrenia or depression ... you're ALWAYS going to have it, it's a deeply integrated part of you ... the only thing you will be able to do is to compensate for the disadvantages and learn to utilize the advantages of this ... this is something you may be able to do without a dx ... your therapist needs to have something more in mind than your having a piece of paper saying that you have a s ...
posted by pyramid termite at 5:24 AM on October 7, 2006
"...paulsc, the psychs I work with have gone waaaaay off rispreridone, and are now far more likely to prescribe aripiprazole or clozapine - the huge weight gain and sexual dysfunction found with risperidone, even on low doses, are kinda counter-productive to assisting people to feel better about themselves. ..."
posted by goo at 7:29 AM EST on October 7
As I said, IANAD, or a therapist, and am just reporting what I know from the parents of the young men I happen to know. Many of the atypical anti-psychotics come with potentially heavy side effects, including clozapine, which puts a patient on at least a monthly blood work screening for immune system suppression, and can also have serious effects such as elevated heart rate, and weight gain. And, finally, not all the atypical anti-psychotics work well for every patient, even if they are appropriate for the condition being treated. Off label uses are, nearly by definition, the purvey of the treating physician; atypical anti-psychotics are all serious drugs, that should be prescribed only when the symptoms they are intended to treat are sufficiently severe that the tradeoffs in side effects are generally out weighed by the improvement in control of primary symptoms they offer, and less medically significant therapies haven't proved effective.
posted by paulsc at 7:01 AM on October 7, 2006
posted by goo at 7:29 AM EST on October 7
As I said, IANAD, or a therapist, and am just reporting what I know from the parents of the young men I happen to know. Many of the atypical anti-psychotics come with potentially heavy side effects, including clozapine, which puts a patient on at least a monthly blood work screening for immune system suppression, and can also have serious effects such as elevated heart rate, and weight gain. And, finally, not all the atypical anti-psychotics work well for every patient, even if they are appropriate for the condition being treated. Off label uses are, nearly by definition, the purvey of the treating physician; atypical anti-psychotics are all serious drugs, that should be prescribed only when the symptoms they are intended to treat are sufficiently severe that the tradeoffs in side effects are generally out weighed by the improvement in control of primary symptoms they offer, and less medically significant therapies haven't proved effective.
posted by paulsc at 7:01 AM on October 7, 2006
A good book to read about Asperger's is Songs of a Gorilla Nation , it's helped me get a grip on my situation. I haven't had a formal diagnosis, but one of my former housemates has a nephew who was diagnosed with AS at an early age and he said I exhibited many of the symptoms his nephew has. When I read the book, I was shocked by how many similarities the author had to my own situation growing up and into adulthood.
It's helped me to accept my situation and at some point I might seek a formal diagnosis and therapy, but when I consider the financial cost of doing so (almost a 50% cut in pay for therapy and diagnosis) I would rather just learn to cope on my own. Persons with AS would be served much better in a Canadian style health care system than the one here in this country.
Other things to consider are diet too, I think I read somewhere that pickled foods cause problems with mood and in my own experiments by including and removing them from my diet there seems to be some truth to it.
The best advice I can give is read, research and get second opinions, especially when it comes to therapy and medications, I don't really see any benefit to meds if the cure is worse than the condition and therapy is so expensive as to reduce one's standard of living.
In short, I've learned to live an isolated life and while it's not the happiest existence out there, it's much less frustrating and stressful than trying to 'fit in'. Also, if you don't have a pet, such as a cat or dog (perhaps two cats), consider getting one. They'll be great companions and mood lifters.
posted by mk1gti at 10:18 AM on October 7, 2006 [2 favorites]
It's helped me to accept my situation and at some point I might seek a formal diagnosis and therapy, but when I consider the financial cost of doing so (almost a 50% cut in pay for therapy and diagnosis) I would rather just learn to cope on my own. Persons with AS would be served much better in a Canadian style health care system than the one here in this country.
Other things to consider are diet too, I think I read somewhere that pickled foods cause problems with mood and in my own experiments by including and removing them from my diet there seems to be some truth to it.
The best advice I can give is read, research and get second opinions, especially when it comes to therapy and medications, I don't really see any benefit to meds if the cure is worse than the condition and therapy is so expensive as to reduce one's standard of living.
In short, I've learned to live an isolated life and while it's not the happiest existence out there, it's much less frustrating and stressful than trying to 'fit in'. Also, if you don't have a pet, such as a cat or dog (perhaps two cats), consider getting one. They'll be great companions and mood lifters.
posted by mk1gti at 10:18 AM on October 7, 2006 [2 favorites]
I can't remember where I've seen it but I recently saw something about how there was a study where they discovered that schizophrenics and people with Aspergers had structural abnormalities in the same areas of their brains. It makes sense, given the fact that some webpages about Asperger's and related conditions have schizophrenia as a "differential" or "overlapping" diagnosis. I have been reading a lot of websites and forums about Asperger's and I believe that's what I've got. I have seen some websites and forums for people with Aspergers where people have described being diagnosed with schizophrenia at one time or another, and the bad side effects of some of the meds. When I was a kid, the authorities were sure that something was wrong with me, but they weren't exactly sure what it was. I actually spent some time in a "special placement class" in an institution after I had spent some time in a "normal" kindergarten. They determined that I was not mentally retarded, but at one point, I was taken to a doctor who lit a cigarette lighter and asked me to look closely at the flame and follow the lighter as he moved it around in front of me. After that, he practically spat the words at us as he told my mother, "see how she stares into the flame. Only Schizophrenics do that. Your daughter is a paranoid schizophrenic and will have to be in an institution for the rest of her life." I remember my mother yelling at him that we were leaving, pulling me out of there bodily and dragging me accross the parking lot, while I was crying and trying to stop her. While I was not old enough to fully understand what he was saying, I knew that (a) it was something bad, (b) that there was probably a file containing the same information in it with my name on it somewhere, and that my mother's actions would not make the file or the label (true or not) go away, or do anything to modify or mitigate the actions of the authorities as they affected me. (Whether or not I was, or am, a schizophrenic is still open to question: but with concerns like this, you'd be paranoid, too.) I had wanted to ask the doctor some questions about what he meant and whether I would be going to a new institution or staying where I was, but my mother had not seen the sense in "bargaining" that I did. I think she should have asked for a second opinion, or said she thought that diagnosing such a thing in someone who belonged to an age group where it was normal to have imaginary friends and play "pretend" was subject to reasonable doubt. (That said, I wonder how many parents accepted without question what this guy said because "he was the doctor" and how many people who don't really need to be might be in mental institutions today as a result.) Having been subjected to the ministrations of the educational bureaucracy thus far, I was aware enough to know that I was not in a normal public school, and that where I had gone at that time and where I would go in the future was being decided higher up on the chain of command. However, the powers-that-be at the time seemed to have dropped the idea as suddenly as they articulated it, perhaps because of the practical difficulty inherent in following through: exactly _where_ and _how_ does one institutionalize a paranoid schizophrenic who happens to be five years old? Would they have put me in a locked ward full of adolescents and/or adults? In solitary confinement in the name of "protective custody"? I can imagine that either alternative would have been regarded as unpalateable, and likely to make me "worse" instead of "better". (Although I must say that I would have probably had a better time in the schizophrenic ward than I subsequently had in the public school system, which is riddled with bullies and worse. While schizophrenics may be bizarre, they are rarely malicious or bullies.) The authorities eventually settled on the labels of "minimal brain dysfunction" and later "learning disabilities" for me, and released me back into the public school system, but in special ed and with counseling. (What I really could have used was Occupational Therapy in dealing with handshakes, holding conversations, telephone calls, taking the bus, etc. but there doesn't seem to be such a thing, and my overprotective mother didn't exactly encourage me to practice.) I have ADHD (whether as part of Asperger's or as a co-morbidity I don't know) and I'm sure that hasn't helped matters. I have read about people with ADHD who have had a tough time in school, but managed to make good grades only to perform poorly on standardized tests: that's me. I was fortunate to have good teachers, and eventually improved my academic performance enough to be mainstreamed. By high school, though I initially had a shaky start, I became a regular inhabitant of the honor roll. I suprised myself by successfully getting through college and even attempting grad school in one of the subjects (Political Science) that Temple Grandin says is inhospitable to those with diagnoses on the autism spectrum. While I have not attained the success I had hoped for careerwise, part of that is because I still have problems with social interaction, timing, etc. and I am sure I have made a bad impression in a few job interviews.
I do consider myself a success because I have so far managed _not_ to become a repeat guest of the state...in any of its other institutions!
I plan to participate in a study about Aspergers' in my area and to get formally diagnosed at the ripe old age of 34...if only to have peace of mind by having it "on the record" that I am NOT schizophrenic.
posted by bunky at 10:46 AM on October 7, 2006
I do consider myself a success because I have so far managed _not_ to become a repeat guest of the state...in any of its other institutions!
I plan to participate in a study about Aspergers' in my area and to get formally diagnosed at the ripe old age of 34...if only to have peace of mind by having it "on the record" that I am NOT schizophrenic.
posted by bunky at 10:46 AM on October 7, 2006
This thread is closed to new comments.
posted by Phred182 at 8:41 PM on October 6, 2006