If you were diagnosed with Asperger's Syndrome as an adult

[Laura Corin]

Could you give me some advice?  An extended family member (aged 60) has had a preliminary diagnosis but is waiting to see another professional before having it confirmed.  So far, he is quite positive about it: it explains a lot, he says, about things that haven't worked in his life.

 

Is there any particular support I can give?  And, if it comes up, how do I answer if he asks whether I had suspected that he had Aspergers, and why I didn't say anything?  The plain answer is that yes I did suspect (more than suspect) and...  I'm not close to him and didn't know how to bring it up.

[Carrie12345]

If it were me, I'd explain that I see ASD traits in EVERYONE, but that it's impossible to tell whether they're pervasive enough for an actual diagnosis without being very familiar with the person in multiple settings.

 

If he were truly upset that you didn't say anything, I'd probably point out that most people would take great offense to the suggestion that something was "wrong" with them, and you would never want to insult him. But, now that he has the dx and is accepting of it, you're happy to support him as it all comes together. (Assuming you are!)  In fact, I might point out that not realizing some people would be offended could actually be an example of an aspie trait.

 

I haven't known anyone dx'ed as an adult, but I've had many adults ask my opinion of them in that area.  Again, I see ASD traits in EVERYONE. Including myself.

[winterbaby]

I had a friend say "yeah, I always wondered about you" wrt autism but he is autistic himself - and a very close friend - I might not have been so cool with that from someone else.

[Janeway]

Nope, no additional support. I assume you treat him fine now and it would be awkward if you suddenly started treating him different. He is still the same person regardless of label.

 

I am 100% certain my favorite uncle has ASD. We adore him. He is brilliant. He smokes cigarettes. He is the only person I know that I tolerate that from. The kids love to hear him tell about things. He is an expert on American Indians. He has done digs and worked at a museum (it is his career, I am just unsure his official title). He is retired now but actually has some Indian relics due to a favor from the governor and the fact that it was early enough in his career that the protection laws in place now were not in place back then. We give him space when he is stressed. But LOVE our time with him when he isn't stressed. I have another cousin who is younger than me who also clearly has undiagnosed ASD. And he moved to where he does not have to interact with anyone. He is the sweetest guy. But he never sends Christmas cards or elsewise. I still send him cards. I sort of have a rule that if I do not get cards for a while I stop sending them. He and that uncle, and anyone over 80/90 years old stayed on my list regardless.

 

When I say both these family members, they have not been diagnosed, but whatever they have going on has been life altering. Both are sweet and pleasant and amazing people. The younger one works in a lab setting up slides and such. He had so many sensory issues that he could not sleep inside growing up. He already lived in almost the coldest part of this country without heading to Alaska. Now he lives in Alaska.  The other one lived in a trailer home on a very low budget. He didn't need or want much and doesn't enjoy traveling, etc. Then he retired at 50 yrs old. Ever since, has all these video games set up and that is what he does all the time. He has older games. The kids LOVE visiting him. He seems to love the kids. But he does not really interact with anyone except us and other family members. As far as the cousin goes, his siblings and parents are the end of who he interacts with.

 

Edited May 22, 2017 by Janeway

[Laura Corin]

Nope, no additional support. I assume you treat him fine now and it would be awkward if you suddenly started treating him different. He is still the same person regardless of label.

 

 

I wasn't clear: I was wondering what support might be helpful as he comes to terms with his diagnosis.  I'm assuming that otherwise things will continue as before.

[scrapbookbuzz]

The best thing to do with people with Aspergers is to be very direct with them.

If he asks if you suspected it, say, "Yes." He may or may not ask why you didn't say anything.

If he does ask, say, "I thought it was a possibility but wasn't 100% sure" which, to me, is what it sounds like

you were thinking, anyway. Aspie folks see things as black and white. There's not a whole lot of 'gray' with them.

 

I was thankful when we figured out my daughter was dealing with Aspergers. It answered a lot of questions for us, too!

[Crimson Wife]

I have heard that the forum over at WrongPlanet is helpful. It's geared towards those "on the spectrum" rather than parents so it's not a forum I read more than just occasionally when I come across a thread of interest via a Google search on a specific topic.

[wintermom]

I'd just stay in as close (or perhaps closer) contact with him as you already have. Maybe take the initiative to reach out so that he doesn't feel like you are running away scared of this new, potential diagnosis. I don't think you ever need to ever say anything about suspecting he had something like this condition. You don't really know yourself, and there isn't anything to gain by saying that you did. Presumably you are not qualified to make the diagnosis, neither were you asked about it in the past.

 

All the best with things!

Edited May 22, 2017 by wintermom

[Laura Corin]

I'd just stay in as close (or perhaps closer) contact with him as you already have. Maybe take the initiative to reach out so that he doesn't feel like you are running away scared of this new, potential diagnosis. I don't think you ever need to ever say anything about suspecting he had something like this condition. You don't really know yourself, and there isn't anything to gain by saying that you did. Presumably you are not qualified to make the diagnosis, neither were you asked about it in the past.

 

All the best with things!

 

Thanks.  No, I wouldn't say anything about suspecting the diagnosis unless he asked me.

[wintermom]

Thanks.  No, I wouldn't say anything about suspecting the diagnosis unless he asked me.

 

Why do you think he would ask you that question? 

[Laura Corin]

Why do you think he would ask you that question? 

 

I could just imagine asking that question myself in his situation, given that there are behavioural aspects and I've known him all my life.

[SKL]

I would probably be honest - like "the thought did cross my mind as I've studied a little about ASD.  Actually there are many undiagnosed adults with ASD."

[SparklyUnicorn]

Hopefully you don't mind me asking, but what's so terrible about this diagnosis?  What is there to come to terms with?
 

 

[Laura Corin]

Hopefully you don't mind me asking, but what's so terrible about this diagnosis?  What is there to come to terms with?

 

 

Not terrible at all.  It's more that it could be a big thing for someone to take in having assumed all their life that they were NT.  That's all.

[SKL]

It is somewhat likely that I have ASD too, and if I were ever diagnosed, I don't think it would bug me or that I'd need support from friends and strangers.  As noted above, it would explain a lot and maybe relieve some stress from people who don't get me.  I mean I'm 50; if ASD was going to ruin my life, it would already have happened.  At 60 even more so.

[SparklyUnicorn]

Not terrible at all.  It's more that it could be a big thing for someone to take in having assumed all their life that they were NT.  That's all.

 

I don't know.  I think you are more worried than needed. 

 

I wouldn't even pursue such information for myself unless I had a string of failed attempts at some sort of life I could be content with.  And then in that case I'd feel relieved to have an answer as to what might be going on. 

[SparklyUnicorn]

It is somewhat likely that I have ASD too, and if I were ever diagnosed, I don't think it would bug me or that I'd need support from friends and strangers.  As noted above, it would explain a lot and maybe relieve some stress from people who don't get me.  I mean I'm 50; if ASD was going to ruin my life, it would already have happened.  At 60 even more so.

 

Same here.

 

It's like the last therapist I went to was far more bothered for me than I was for myself.  She couldn't understand how I could be content with my life the way it is.  I found her reaction bizarre.  LOL

 

If I pursued an official diagnosis it would be more out of curiosity. 

 

The diagnostic techniques are also not perfect.  Not like they measure some sort of chemical level in your body.  They ask you a bunch of questions. 

[Hannah]

My cousin was diagnosed with Aspergers when she was in her 20's.   It explained a lot of quirkiness and I think the family as a whole has become kinder because some behaviours which were read as rudeness are now understood.  I think the understanding has made the most difference.

[Crimson Wife]

 

The diagnostic techniques are also not perfect.  Not like they measure some sort of chemical level in your body.  They ask you a bunch of questions. 

 

The test that is considered the "gold standard" relies on subjective opinions of observed behaviors. My DD had it ran 3 times in 2 months by 3 different evaluators with 3 conflicting results. The developmental pediatrician said my DD met criteria for both language and social interaction. The school district psychologist said she met criteria for language but not social.The child psychologist for the Regional Center said she met it for social but not language. As far as I could tell, my DD behaved similarly throughout all 3 evaluations.

 

[winterbaby]

Not terrible at all.  It's more that it could be a big thing for someone to take in having assumed all their life that they were NT.  That's all.

 

Is the person really terribly surprised though? I never assumed I was NT; I just thought that whatever was wrong with me was unique, undefinable, and kind of shameful. I was glad to have a category to slot things into. Though I did gain insight into things I hadn't even thought of as part of my difference.

[Lawyer&Mom]

Hopefully you don't mind me asking, but what's so terrible about this diagnosis? What is there to come to terms with?

 

I recently realized I'm autistic. Since this sheds light on my entire life history, there has been a huge amount to process. Is autism ruining my life? Hardly. But it kinda ruined lower elementary, and I need to chew on that. And I have small kids, what will autism mean for my parenting? And for them. Are they also autistic? What might that mean for school? Etc. etc. It's been stressful, and I have a lot more to think about than I have time to think.

 

I have no shame in telling the world I'm autistic. There's nothing to hide. Even so, it's still a big deal.

[trulycrabby]

I would just say something like, "the people I know who are on the autism spectrum are very intelligent and creative people."

 

I'm 55. Realizing that I have mild autism has been a huge relief; I always knew my brain worked differently than most people's, and now I know why.

Edited May 22, 2017 by trulycrabby

[PeterPan]

Why do you think he would ask you that question? 

 

 

I could just imagine asking that question myself in his situation, given that there are behavioural aspects and I've known him all my life.

 

Just stating the obvious, but he probably doesn't give any thought to what you're thinking of him or whether you noticed. It's the whole perspective-taking gig. He's not doing it much, which is why he's diagnosable. So it's a bizarre question he's not likely to ask.

 

If you want something interesting, go to this link and read through the communication profiles. You'll probably find your relative there. He might find himself there though not at the place where *other* people would see him. So support? Um, don't pry. Not that you would, but I'm just saying it's like anything that is personal. If he wants to talk about it, he will. And yeah, he's probably feeling a lot better for having an explanation that connects the dots. If he's talking with someone who is positive and knowledgeable and gets him, he'll probably have a level of discussion that he won't bother to have with other people. With them he'll probably be more matter of fact, because he doesn't have to explain. The most OBNOXIOUS thing you can be faced with (among other things I guess) is the whole are you sure, I wouldn't have known, I don't see it, blah blah. You're not saying that. I'd suggest that if he brings it up you just be really positive, like that's so awesome that you figured that out and have gotten the answers you were looking for. After all, he sought the diagnosis because *he* had questions about his life.

 

When you read the article, he's probably going to be ESC, maybe NSC, more likely ESC. It will probably explain a lot. 

 

Socialthinking - Articles

[SparklyUnicorn]

The test that is considered the "gold standard" relies on subjective opinions of observed behaviors. My DD had it ran 3 times in 2 months by 3 different evaluators with 3 conflicting results. The developmental pediatrician said my DD met criteria for both language and social interaction. The school district psychologist said she met criteria for language but not social.The child psychologist for the Regional Center said she met it for social but not language. As far as I could tell, my DD behaved similarly throughout all 3 evaluations.

 

 

I assume this works better on children.

[Crimson Wife]

I assume this works better on children.

 

Module 4 of the ADOS is designed for use with adults. But I don't personally think that much of the ADOS.

[SparklyUnicorn]

Module 4 of the ADOS is designed for use with adults. But I don't personally think that much of the ADOS.

 

I'm just curious how they could pull that off with an adult and get a useful result. 

 

And somewhat related, but didn't they recently do away with Asperger's as a diagnosis?  I thought I heard that.  I might be imagining that though!

[Laura Corin]

 

And somewhat related, but didn't they recently do away with Asperger's as a diagnosis?  I thought I heard that.  I might be imagining that though!

 

Asperger's is what he said, but the NHS website uses ASD.  It may have been explained to him using the older term.

[winterbaby]

Just stating the obvious, but he probably doesn't give any thought to what you're thinking of him or whether you noticed. It's the whole perspective-taking gig. He's not doing it much, which is why he's diagnosable. So it's a bizarre question he's not likely to ask.

 

Because of my difficulty finding out by the usual means, I tend to spend a lot of thought on figuring out what people are thinking of me. I find the idea that autistics are only those who spend their whole lives never having it cross their mind to attempt to imagine others' perspectives distressingly stereotypical. We often get it wrong, but we're not inherently incapable of even conceiving of the issue.

 

And I would not be real happy if I learned my loved ones were reading articles trying to armchair diagnose exactly what subtype I am or whatever.

[cbollin]

 

 

And somewhat related, but didn't they recently do away with Asperger's as a diagnosis?  I thought I heard that.  I might be imagining that though!

 

Could be difference in the UK vs USA.  ???This article (from a UK site) might explain it better than I could try.

 

http://www.autism.org.uk/about/diagnosis/criteria-changes.aspx

[SparklyUnicorn]

My son said a girl in his drama class told him they no longer use the term.  That she now has a an autism diagnosis.  Something like that.  She talks to the class a lot about it (it's a small intimate class of high school students). 

 

 

[kbutton]

Because of my difficulty finding out by the usual means, I tend to spend a lot of thought on figuring out what people are thinking of me. I find the idea that autistics are only those who spend their whole lives never having it cross their mind to attempt to imagine others' perspectives distressingly stereotypical. We often get it wrong, but we're not inherently incapable of even conceiving of the issue.

 

And I would not be real happy if I learned my loved ones were reading articles trying to armchair diagnose exactly what subtype I am or whatever.

 

I am the parent of an adolescent with ASD, so take this with a grain of salt, but I think that there are probably autistic people who wonder what others think and others who don't. 

 

My son is more like winterbaby. He is aware that other people have thoughts about him. He is aware that he can't always blend in. He wants to fit in, and he understands a lot about what that means, but he doesn't always have the means to bridge that gap, and sometimes he's faking it until he makes it. Sometimes he's relieved to not be NT in some fashion or another (aren't all of us quirky people fond of some of our quirks?).

 

Other people with ASD may or may not notice and may or may not give a hoot. 

 

For a very positive view of ASD/Asperger Syndrome and how to support someone, Tony Attwood's books are very good. 

 

As for adjusting to a diagnosis/label, however you want to phrase it, plenty of people are relieved to see themselves in some sort of depiction outside themselves--people identify with animals, characters in fiction or movies, ideas in poetry, pieces of art, etc., and I think this can be true of individuals on the spectrum too. How many times do we have a Meyers-Briggs thread that makes people here feel validated when their rare type is represented well? But yet, when I first learned about my M-B type, it was nice to have words for it, but the literature describing my type was pretty negative. That was really hard. There are many more positive descriptions for that type available now that talk about the strengths. That's very affirming. I also hadn't had enough life experience to identify well with my type, and getting a job in a field that put my strengths on display and made them desirable also really helped me out.

 

I think Tony Attwood's books are straightforward and supportive, like finding positive and helpful (but realistic) literature about your personality type vs. only negative information.

[Crimson Wife]

And somewhat related, but didn't they recently do away with Asperger's as a diagnosis?  I thought I heard that.  I might be imagining that though!

 

The most recent update of the American Psychological Association's Diagnostic and Statistical Manual eliminated Asperger's as a diagnosis. Some of those who would've previously qualified under Asperger's now will qualify for Autism Spectrum Disorder Level 1 (highest functioning level). Others only qualify for the new "Social Communication Disorder" and there was some other new disorder that sounded to me like it might be inappropriately given to people who really are "on the spectrum". I forget the specific name but it is characterized by meltdowns/tantrumming out of proportion to the situation.

 

[Jean in Newcastle]

The most recent update of the American Psychological Association's Diagnostic and Statistical Manual eliminated Asperger's as a diagnosis. Some of those who would've previously qualified under Asperger's now will qualify for Autism Spectrum Disorder Level 1 (highest functioning level). Others only qualify for the new "Social Communication Disorder" and there was some other new disorder that sounded to me like it might be inappropriately given to people who really are "on the spectrum". I forget the specific name but it is characterized by meltdowns/tantrumming out of proportion to the situation.

 

Yes. Technically my son has ASD 1 but we all prefer to say Aspie because it gives the best immediate idea of how he thinks/interacts. Many hear the Autism in ASD and think only of someone with what used to be called classic Autism. But we don't tend to use any label irl much. I use it most on this board but very rarely in real life. When we do use it in real life it is usually only within the family- not because it is taboo or anything but simply because it doesn't come up or matter that much. Yes, some of his quirks are ASD but some are simply just his personality. Edited May 22, 2017 by Jean in Newcastle

[mom of 2 boys]

I was diagnosed as an adult, and I really wanted to talk to people about it. It kind of became a special interest for awhile, which was probably part of processing it. Even though I wanted to talk about it, people seemed to feel awkward hearing about it, and they didn't know what to say. A few people asked questions though. I found that helpful, and it made me feel like they cared. I wouldn't have ever asked if anyone suspected that I have it though. I assumed that most people do not know enough about it to figure it out. If anything, I thought people might not believe me when I told them I about it.

[Lawyer&Mom]

My coworkers are smart, well-educated people, some deeply familiar with various special needs labels, either their own or their children's. No one suspected I was autistic. We as a society just aren't that familiar with autistic women. I certainly wasn't.

[Tanaqui]

I was diagnosed as an adult, and I really wanted to talk to people about it. It kind of became a special interest for awhile, which was probably part of processing it. Even though I wanted to talk about it, people seemed to feel awkward hearing about it, and they didn't know what to say. A few people asked questions though. I found that helpful, and it made me feel like they cared. I wouldn't have ever asked if anyone suspected that I have it though. I assumed that most people do not know enough about it to figure it out. If anything, I thought people might not believe me when I told them I about it.

 

A lot of people go through that stage. It's perfectly normal, though I suppose it might be tiresome for everybody else. Still, it passes. Just listening to whoever-it-is is huge.