HI, new here, son recently dx'ed

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ebtbmom
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14 May 2013, 9:57 pm

Hi! My son, 15, has just been diagnosed with Asperger's. I was suspicious that he could have Asperger's before the test, which is why we requested it, but now that it's official I'm questioning it. Did you guys experience this reaction too? It seems like the few people that I have shared the dx with don't believe it. My son does not avoid eye contact, if anything he tends to stare, and he does not have an unusual way of speaking. He does not have unusual motor or vocal tics either. Honestly, when people first meet him they think he is really smart and polite and assume that he is quite successful at school. It's only after people get to know him that they tend to pull away and think of him as being weird.

He has had a history of social skills problems, he only has 2 "friends" and I say that because he's admitted before that he feels like they are more kids he just plays video games with. He commits major faux pas and is seemingly oblivious to it, he frequently embarrasses or offends other kids. His diet is limited to 5-10 foods, specific preparations and specific brands. He also can't stand certain textures on his hands. And while he does tend to get pretty heavily involved in his interests, I wouldn't say that he's an "expert" in anything. He doesn't have some super genius ability either, honestly he's passing school right now, math only barely!

Now I'm questioning the diagnosis. I'm reading The Complete Guide to Asperger's and sometimes I feel like "that's totally him" and other times "he doesn't do that". Maybe it's a normal first reaction. And I know that people have different aspects of the condition.

Has anyone else had this experience? Is it possible that the diagnosis is incorrect?

He was previously dx'ed with anxiety and inattentive ADHD and is being medically treated for those.

Thanks!



ASDMommyASDKid
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15 May 2013, 2:08 am

Based on what you said, it could very well be appropriate.

Staring is unusual eye-contact and while not stereotypical, is also not uncommon. If you don't have the innate social sense to know when to drop eye contact, that can be an indicator as much as low eye-contact is. My son does both. He is naturally low eye-contact but he tries it because the school finds it useful to encourage. So even at home (where I do not care about eye contact) he will sometimes stare into my eyes for an unusual amount of time. (I think he is sometimes looking at my forehead, but it gives the appearance of eye-contact.)

Tics are not part of the diagnosis questions, to my knowledge, unless I am misremembering. There are stims which take a variety of forms, and may not be readily apparent especially if he is high functioning and has learned to hide them. My son does not stim as much as he used to even at 7 yrs old. A 15 yr old could be hiding it pretty well, possibly. Try to remember to when he was a toddler. That is a better indicator.

Autism is a spectrum and there is a wide swath of behaviors in it. Having 2 pseudo friends might be indicative, although it could be other things too I am sure. Have you received a copy of the diagnosis report? That might help in deciding if you think they did a good job.



ebtbmom
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15 May 2013, 7:36 am

The psychologist used a variety of tests to come to the diagnosis.

I'll list what he used from the report:
Clinical interview
Wechsler Intelligence Scale for Children
Woodcock Johnson NU Tests for Achievement
Achenbach Child Behavior Checklist
Achenbach Teacher Report Form
Asperger Syndrome Diagnostic Scale
Thematic Approach Test
The House-Tree-Person projective instrument
Record Review

I just feel like some of these results are probably subjective. I think what's made me question it is other people's response, of course, they are not doctors so it's not like they have any more information than I have. And like I said, my kid's problems aren't quickly obvious, it's more obvious when you get to know him. Also, these social issues have ALWAYS been present. Now looking back, I can remember picking him up from school as young as 1st and 2nd grade and he was never playing with another kid. He was pretty much always alone. I thought he just didn't like the other kids! :oops:



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15 May 2013, 7:53 am

Yeah, there is a lot of subjectivity to it. That is because so much is behavioral versus something like a virus that is much easier to diagnosis. Psychology is like that. Symptoms overlap with each other, comorbidities abound and it is not clear cut.

At the end though, the diagnosis is just a means. Whatever issues your son has (social and otherwise) exist whether he has the "perfect" diagnosis or not. Autism is a spectrum and there are so many differences it makes it harder than a lot of other conditions to nail down. If he has a lot of the same issues the same interventions may work for him.

Obvious vs Not indicates severity. My son's issues were evident early and apparent and with hindsight even earlier. He has some very severe social issues though. The phone screening folks were not smart enough to look beyond the fact that he was reading at 2 yrs old. To them autism automatically implied pervasive cognitive issues. I was happy that everything was AOK and I let it be for longer than I should have.

The only thing more annoying to me than the pseudoscience patina to the whole thing is the general ignorance of professionals who IMO should know better.

Anyway, mini-rant aside, I would take a breather to try to look as objectively as possible and then look through the report and see what you agree with, and what you don't. Then see what you think. I di not agree with everything in our report, either. Anything I think they got wrong, I work on differently. (They stressed a need for routine too much. He only needs that much routine when he is in a stressful environment with little autonomy. At home I can be more flexible and I am, so he can learn to be less rigid.)



zette
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15 May 2013, 8:02 am

I think it's normal to have a questioning reaction to the dx. I certainly did. AS is pretty diverse and there can be a lot of things in the descriptions that don't match your kid, and he can still have AS. What convinced me was reading details from other parents and thinking, my kid does that, too. In particular, there was a thread on another forum where a mom was joking about how her son never gave his stuffed animals names beyond bear, dog, etc., and I realized my 5 yo had named all of his Mr. Bear, Penguin, Mr. Fish, etc. Several other moms chimed in with similar stories. It's the little details that make it more real.

You might want to read Parenting Your Asperger Child by Alan Sohn. He's got some great descriptions of different ways AS appears in different kids.



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15 May 2013, 11:36 am

My son was diagnosed just a few months ago--I did not suspect it and found it hard to believe. I first came to wp asking about the frequency of misdiagnosis.

Then I learned about what aspergers really is, and talked about a lot of things with my son and realized that the diagnosis was correct. Then I realized I might not be NT.

What I learned along the way is that diagnosis is subjective, but experienced clinicians usually know it when they see it. The tests may support the diagnosis, but it's the clinician who really knows the symptoms and their patterns of expression.

Unless the person who diagnosed your son has very little experience, I would give a lot of credence to their professional perspective.

Everyone with Aspergers is an individual. Expect your son not to be like other aspies in every detail.

I hope you find clarity with this and the insight that comes with accepting the diagnosis helps you raise your son.



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15 May 2013, 2:37 pm

I too went through a doubting period, and on really good weeks, I think it seems so mild that why did we bother with the diagnosis. On other days, I think to myself, Well that explains that behavior.

When you look at all the symptoms of ASD's there are a LOT. Most people with ASD do not have all or even most of them. That along with personality differences makes every person with AS unique.

Welcome to the group :)


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15 May 2013, 7:27 pm

My kids do not have an "in your face" kind of issue, either. Both of them present as "normal enough" at first. It is only after awhile that you start to notice they are not "just like everyone else." I find it helpful to remember that autism is a spectrum. Just because my kids fall on the mildly impaired end does not mean they do not have impairments. Remembering this helps me figure out how to help them succeed in life. If I simply saw them as "typical," I think I would expect way too much of them--or at least expect the wrong things because I still think I have high expectations--and I would probably have 2 kids with 0 self-esteem and a whole lot of anxiety going on.

There are people who question my kids' diagnoses, though moreso for my daughter. That is their right. But she is not their responsibility. She is mine. So at the end of the day, I need to do what is right for her, and one of those things is accepting the fact that she is not wired like everyone else and needs extra help. Because her deficits are not readily apparent, I have to be more vigilant in pointing out to others when she needs help.

But yes. There are days where I look at her and think "huh....maybe I was wrong...maybe she was typical all along." Sometimes those days will even stretch into a week. Or maybe even two. But then something happens and BAM!! ! I am reminded with crystal clarity that she is not typical and she never will be. And then I wonder how I ever doubted it...until, of course, I have a week or two of calm, at which point I start doubting it all again! LOL! IOW, it's completely normal, and for me it just wasn't when she was first diagnosed. It has been ever since then.


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16 May 2013, 5:37 am

My son as well, presents typical when you first meet him. MOST people are blown away that he is on the spectrum. BUT hang out with him in social settings, over stimulating settings, or just get to know him more then just on the surface and its apparent he isn't a typical kid.

I think people have stereotypes about what Aspergers is and when our kids aren't the stereotypical kind, they find it hard to believe. I had NO IDEA my son was on the spectrum, and was shocked to find out he was, but after much research, I can clearly see that he is.


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16 May 2013, 9:34 pm

Yes I absolutely questioned the dx when my daughter was diagnosed. I think it's a normal reaction but the thing is aspergers is not always the same in any 2 individuals. There are common or frequently seen characteristics but I've never seen anyone fit all the criteria. That's why it says two or more, etc in the diagnostic manual. Enough of the characteristics must be present to dx, but not all of them.