Testing for Asperger as an adult
February 5, 2015 8:21 AM Subscribe
How reliable are tests for Asperger Syndrome in adults?
I'm a 38 yo male, recently tested as an adult for Asperger. My results on the various tests given were as such:
Childhood Autism Rating Scale (CARS-2ST): 27.5, or .5 below the cut-off for Mild-Moderate Autism
Social Responsiveness Scale-2 Adult Form (SRS-2): Total T-Score of 70, or Moderate
Australian Scale for Asperger Syndrome Adult Version: 63 out of 84 symptoms.
Adult Autism Spectrum Quotient (AQ): 35 of 50 symptoms.
The report from my therapist reads that I "appear to meet criteria for Asperger's Disorder."
My question is really just this: is there any reason to question this diagnosis? That is, given that this is something usually diagnosed in children, any reasons why the results might be skewed as an adult? Just trying to figure out how to understand what this means for me. Thanks
I'm a 38 yo male, recently tested as an adult for Asperger. My results on the various tests given were as such:
Childhood Autism Rating Scale (CARS-2ST): 27.5, or .5 below the cut-off for Mild-Moderate Autism
Social Responsiveness Scale-2 Adult Form (SRS-2): Total T-Score of 70, or Moderate
Australian Scale for Asperger Syndrome Adult Version: 63 out of 84 symptoms.
Adult Autism Spectrum Quotient (AQ): 35 of 50 symptoms.
The report from my therapist reads that I "appear to meet criteria for Asperger's Disorder."
My question is really just this: is there any reason to question this diagnosis? That is, given that this is something usually diagnosed in children, any reasons why the results might be skewed as an adult? Just trying to figure out how to understand what this means for me. Thanks
Disclaimer for you: I used to work in autism research, and was trained to administer and score certain tests for autism. I worked closely with the psychiatrists who interpreted those tests and made diagnoses, but I am not myself able to diagnose anyone, and research vs. clinical diagnoses can be slightly different beasts anyway.
All of that said, one thing that was striking to me was how hard it was to get a good solid diagnosis in most of the adults we worked with, especially those who were more solidly verbal, able to lead an independent life, etc. There were a lot of people we felt pretty certain presented as somewhere on the spectrum, but for research purposes where you really have to set strict parameters, we could not confirm them as having that diagnosis because we could not get reliable information about their childhood or because they had adapted very successfully to some of their social challenges and masked well some of the symptoms we were trying to look for. There were a lot of people to whom we had to say "we are not able to confirm this diagnosis for you, but we can refer you to a clinical site, where the criteria are somewhat different and you may be able to get a diagnosis there."
If you have a lot of concern about getting the right diagnosis for services or for whatever other reason, the gold standard of diagnosis is the Autism Diagnostic Observation Schedule (to be done with you) and the Autism Diagnostic Interview (to be done with someone who knew you well as a child and also knows you well now, if at all possible, although they can do just the current part if necessary.) These tend not to be done as much in clinical practice as in research because they are more time- and resource-intensive. But you could ask about them and see if it might be possible to have them done.
posted by Stacey at 8:58 AM on February 5, 2015 [3 favorites]
All of that said, one thing that was striking to me was how hard it was to get a good solid diagnosis in most of the adults we worked with, especially those who were more solidly verbal, able to lead an independent life, etc. There were a lot of people we felt pretty certain presented as somewhere on the spectrum, but for research purposes where you really have to set strict parameters, we could not confirm them as having that diagnosis because we could not get reliable information about their childhood or because they had adapted very successfully to some of their social challenges and masked well some of the symptoms we were trying to look for. There were a lot of people to whom we had to say "we are not able to confirm this diagnosis for you, but we can refer you to a clinical site, where the criteria are somewhat different and you may be able to get a diagnosis there."
If you have a lot of concern about getting the right diagnosis for services or for whatever other reason, the gold standard of diagnosis is the Autism Diagnostic Observation Schedule (to be done with you) and the Autism Diagnostic Interview (to be done with someone who knew you well as a child and also knows you well now, if at all possible, although they can do just the current part if necessary.) These tend not to be done as much in clinical practice as in research because they are more time- and resource-intensive. But you could ask about them and see if it might be possible to have them done.
posted by Stacey at 8:58 AM on February 5, 2015 [3 favorites]
I remember looking into testing for Asperger as an adult. I know that testing for Asperger for adults is different because sometimes, adults (especially women) have learned to fake social cues and behaviors so the symptoms might be more subtle or they might ask different questions altogether.
I think there is a possibility that I have some sort of Asperger or Autism, but I am successful, fairly well-spoken, integrated, with friends and married. I work in engineering, so it's not even like I have to deal with customers. (Though I have also done retail successfully.) So I don't think it's even worth it to test, because they just wouldn't find anything conclusive, after spending thousands of dollars. (There is a place local to me that does very comprehensive adult screenings.) However, whenever I (a layperson) read the traits of children on the spectrum, I see a lot of my own childhood. And even the adult symptoms look like things I would do if I were too tired/stressed, and stopped checking my own actions and reactions. (But I usually try to manage my energy better than that, and so I can't say that I do them "most" of the time.)
So I think I would say that if you experience difficulties in life, and getting this diagnosis means that you can get accommodations for these difficulties, you should treat the diagnosis as valid. If you don't need accommodations, then just treat it as a way to validate different feelings/problems you had as a child, if you had them. In the end, how does anyone know exactly what is going on in someone else's brain, to know whether we all think the same way or not?
posted by ethidda at 11:11 AM on February 5, 2015 [1 favorite]
I think there is a possibility that I have some sort of Asperger or Autism, but I am successful, fairly well-spoken, integrated, with friends and married. I work in engineering, so it's not even like I have to deal with customers. (Though I have also done retail successfully.) So I don't think it's even worth it to test, because they just wouldn't find anything conclusive, after spending thousands of dollars. (There is a place local to me that does very comprehensive adult screenings.) However, whenever I (a layperson) read the traits of children on the spectrum, I see a lot of my own childhood. And even the adult symptoms look like things I would do if I were too tired/stressed, and stopped checking my own actions and reactions. (But I usually try to manage my energy better than that, and so I can't say that I do them "most" of the time.)
So I think I would say that if you experience difficulties in life, and getting this diagnosis means that you can get accommodations for these difficulties, you should treat the diagnosis as valid. If you don't need accommodations, then just treat it as a way to validate different feelings/problems you had as a child, if you had them. In the end, how does anyone know exactly what is going on in someone else's brain, to know whether we all think the same way or not?
posted by ethidda at 11:11 AM on February 5, 2015 [1 favorite]
My question is really just this: is there any reason to question this diagnosis?
Well, if there is some sort of downside to having the diagnosis, that would be a good reason to question it. Just in case that's what you were asking.
posted by yohko at 8:59 PM on February 5, 2015
Well, if there is some sort of downside to having the diagnosis, that would be a good reason to question it. Just in case that's what you were asking.
posted by yohko at 8:59 PM on February 5, 2015
My Psychiatrist floated the idea of me getting formally tested for Asperger's as I show a lot of the symptoms, but I ultimately decided not to. Here's the reasoning as to why:
1. I'm 45, and have been getting along fairly well so far. Bumps in the road, sure - but I'm managing.
2. It costs a thousand dollars or more, and insurance won't cover it.
3. Any sort of work or school accommodation I'd need, I can get covered under the ADA (I'm in the USA) due to my ADHD - which I did get formally diagnosed, and I'm getting treatment for.
posted by spinifex23 at 10:47 PM on February 5, 2015
1. I'm 45, and have been getting along fairly well so far. Bumps in the road, sure - but I'm managing.
2. It costs a thousand dollars or more, and insurance won't cover it.
3. Any sort of work or school accommodation I'd need, I can get covered under the ADA (I'm in the USA) due to my ADHD - which I did get formally diagnosed, and I'm getting treatment for.
posted by spinifex23 at 10:47 PM on February 5, 2015
Firstly, we no longer consider Asperger's a disorder, it is a condition, different health systems are arriving at this at different speeds.
Although we knew the Dx, we pursued it formally for my OH in his 40s. I've lived with my 54yr old partner for 30 yrs and our second child a son is Aspie. I use that diminutive very deliberately and consider I've got the war wounds and equivalent of a several campaign medals to back this choice up.
There are benefits to being diagnosed. It took 10 years before my OH would agree to undergo the process you just did, after serious work problems, dismissal, etc., which took an horrendous toll on the family.
The way your brain works deviates for good and ill from what is termed NT. There are some amazingly positive benefits. But the cons suck major ass.
One feature is a lack of insight into the impact of the issue on you and yours. There can also be what appears to be an arrogance about many adult Aspies that, again, does them no favours.
But because an appreciation of some of the subtleties of human communication is an issue for many Aspies, some ignore signs until serious work and relationship problems result, often to their great surprise.
your question rings bells for me, about 10 years of them.
feel free to MeMail me.
posted by Wilder at 11:12 AM on February 7, 2015
Although we knew the Dx, we pursued it formally for my OH in his 40s. I've lived with my 54yr old partner for 30 yrs and our second child a son is Aspie. I use that diminutive very deliberately and consider I've got the war wounds and equivalent of a several campaign medals to back this choice up.
There are benefits to being diagnosed. It took 10 years before my OH would agree to undergo the process you just did, after serious work problems, dismissal, etc., which took an horrendous toll on the family.
The way your brain works deviates for good and ill from what is termed NT. There are some amazingly positive benefits. But the cons suck major ass.
One feature is a lack of insight into the impact of the issue on you and yours. There can also be what appears to be an arrogance about many adult Aspies that, again, does them no favours.
But because an appreciation of some of the subtleties of human communication is an issue for many Aspies, some ignore signs until serious work and relationship problems result, often to their great surprise.
your question rings bells for me, about 10 years of them.
feel free to MeMail me.
posted by Wilder at 11:12 AM on February 7, 2015
Wilder, what is an "OH"? I tried google and came back with Ohio and hydroxide.
posted by yohko at 2:25 PM on February 7, 2015
posted by yohko at 2:25 PM on February 7, 2015
Other half?
posted by Saxon Kane at 9:53 AM on February 13, 2015
posted by Saxon Kane at 9:53 AM on February 13, 2015
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Don't be turned off by the marriage / husband part if that does not apply to you. It is written by a man who finds out his diagnosis in his 30's and what it meant for him and his life. So much of it is applicable to anyone and their friendships/careers/relationships etc.
posted by maxg94 at 8:51 AM on February 5, 2015