Asperger's doesn't really seem to fit...

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..but I think that's the diagnosis that's coming the way of my 15 year-old son. We've been having a new, and very overdue Ed Psych reassessment done, and from the first appointment she's been hinting that we may have other issues going on. He's having the Autism assessment tomorrow.

A bit of history: Physical milestones all hit, fine motor delay, VERY language-delayed - in fact all early investigations surrounded his late and odd language development. The diagnosis given when he was 5 was Semantic Pragmatic disorder (this is in the UK, I believe this diagnosis is not given in the US, or in Canada where we now live, but I think it is generally accepted to be somewhere on the spectrum). Lots of therapy, language came along slowly, but is still 'odd'. He'll often not be able to find the right word and will substitute something similar. Voice and tone is sometimes 'flat'. Has a great vocabulary which is sometimes used in an unusual way. Sometimes talks too long about something he knows about, but will realise quite quickly and say "Sorry, I know you're not interested in this..." and stop.

School has been tough for him educationally; diagnosed learning disabilities - dysgraphia and very poor working memory. Math is tough. He's probably ADHD-PI too. Great imagination - he's writing a book at the moment (which isn't that fantastic, but I think it's fantastic that he's doing it and we're encouraging him all the way...) He's in a special program for kids with LD in a mainstream class and he does fine. Getting better at taking responsibilty for his homework etc.

Socially, he has friends, doesn't make lots of new friends, but does well with those he has. They all seem to be the same as him - goofy and a bit awkward, but funny and good company. Good sense of humour - not at all literal, loves irony and puns. Eye contact fine with those he knows well, but a bit off with unfamiliar people. Often will speak out of turn, sometimes blurts out things that would be funny in another setting, but he doesn't realise when it's appropriate - sometimes will realise after he's said it. Good at picking up others' emotions by their facial expressions.

Had sensory issues when he was little (haircuts were bad) and still has a few, but not major concerns - still doesn't like haircuts much, and cuts labels out of clothes if they're scratchy. Hasn't enjoyed having braces, but nothing unusual there. Nothing that affects daily life. Races go-karts, so isn't bothered by loud noises, strange smells etc.

No obvious stims, although he does a little throat clearing cough often when he's talking. No other times - to me it's more of a 'gathering thoughts' tool because the words don't come easily to him. Could also be a nervous thing because he knows his speech isn't that clear.

Never has meltdowns and hasn't since he was very young and didn't understand any language. They were a regular occurrence when he was 3-4 or so, but not since then. He's the middle of three kids and is the easiest-going of all of them. (16 yo NT daughter is the hardest on my nerves!)

Likes video games and the internet, but no more than any other 15 year-old boy I know; no other special interests. Did have several obsessions when he was little.

No problems with changes in routine, clothes, food or anything, although would not choose change just for the fun of it (e.g. I have suggested re-painting his bedroom a couple of times and he's declined with thanks, but when I rearranged his room without warning him, he really liked what I'd done and would probably be fine if he came home and I'd re-painted).

Does this sound like anyone else's kid? From what the Ed Psych has said, it sounds like they definitely think it's Asperger's, but to me there are too many things that don't fit. How mild can Asperger's be? Are there any other diagnoses which they might come up with? Could this be just a language disorder and a general Aspie-ish quirkiness?

Thanks for any input, and Sorry for the long first post!

Well with the language delay it would not be Asperger's if he is on the autism spectrum. There are other conditions that can be associated with a language delay.

Was his delay receptive (not understanding language) or expressive (understood but could not communicate back)?

I would talk to the psych about my concerns, but also trust that she can provide some direction on what to do.

Thanks for your reply. His problems with language were both receptive and expressive. At 3 he basically understood nothing of what he was hearing, and couldn't express himself either. Once he developed some language the tantrums stopped because now he understood when we said "Now it's time to leave", or "One more story, then it's time for bed" or whatever.

Interesting that you say it can't be Asperger's because of the language issue, because I've also read that, yet this seems to be what the Ed Psych has picked up on. I need to do some more reading about PDD-NOS. I can't believe that he will be diagnosed with classic autism, because his problems just aren't severe enough.

Autism can be high-functioning, you know. I guess it wouldn't be "classic autism" then, but it's still autism.

I wouldn't honestly place him anywhere on the Autism spectrum, though, from your description of him. He doesn't seem to have an unusually strong preoccupation with a narrow range of interests, and he understands facial expressions and doesn't seem to have too much trouble with social interaction. That kind of seems to disqualify him... but this is just my view.

From what you say here he doesn't seem to me to be autistic/Asperger's. I'm the mother of a boy with Asperger's and so an informed amateur, not a professional.

Is it possible that the autism assessment is more about eliminating that as a possibility? However it goes, make sure that you receive a detailed assessment report and can sit down with the assessor(s) to go through the report, listen to what is said, and to be heard yourself.

Last edited by Marcia on 09 May 2012, 7:25 pm, edited 1 time in total.

It is important to remember that it is a spectrum, that not all of the criterion have to be met for it to be diagnosed, and that the exact language for what it is matters not a whit as long as a) your child is getting what he needs and b) people understand him. Many people who qualify for a diagnosis are very successful, and can have impairments only the people closest to them are aware of. TV and Movies tend to exaggerate the outward symptoms of autism and give people the impression that every autistic is the same walking, talking robot who melts down at loud noises and can't look people in the eye. My own son struggles tremendously because nobody believes he has impairments despite the giant pile of documentation I have to show that he does: he's extremely successful at mimicking social skills even as he struggles with them. We have become used to calls from the school that start with "I don't know what happened, but..."

Asperger's syndrome is typically diagnosed for a child without an early language delay, and (IMO) in part because the distinction seems silly when they get to be 10 or so and the language-delayed "high-functioning" kids have caught up in speech they are largely the same. It will not be a diagnosis in the US after the new DSM comes out. Here are the current DSM criterion: http://www.autreat.com/dsm4-aspergers.html

"Sometimes talks too long about something he knows about, but will realise quite quickly and say "Sorry, I know you're not interested in this..." and stop. " This, to me, would indicate the possibility that your son has both strong interests and difficulties with social interaction - having to catch yourself is not the same as naturally following the ebb and flow of conversation, or knowing naturally which topics might interest your conversation partner. Just because he's successful in managing his difference (which is the goal of all those therapies, after all, so he's doing well!) doesn't mean they don't exist or were never there.

The real question is: what will this diagnosis, if offered, get for your son? A diagnosis is only as good as the interventions that come with it: over-diagnosis is only an issue if they waste your time with interventions that don't help or offer ones that do harm or hold the child back.

Please note: I AM NOT A PARENT. however I have lived the life. and try and be a pretty good guy.

I generally agree with the person above who said the diagnosis doesn't matter, as long as the person's getting the help he needs. You know, a seasoned math tutor could gently try two different approaches in a 20 minute tutoring session. This wouldn't frustrate your son and thus he could have this kind of tutoring session two or three times a week. And to me, this kind of ping-ponging process between theory and practice is so much better than a comprehensive IEP which is then etched in stone. But the whole special ed system is geared toward the latter.

And of course Asperger's is a prestige diagnosis, which means helping professionals will likely treat your son better (shouldn't be this way but probably is).

I myself have patchy social skills.

Now, on the other hand . . .

Stimming may be one of the big 'money' symptoms of Asperger's. Doesn't mean every person who stims is Aspie, but it is one of the big ones.

I have a favorite T-shirt I like to squeeze and twist as I imagine sports or action movie scenes, and sometimes I'll even make sounds of explosions or fighting. I know, embarrassing, isn't it?

And believe it or not, this is functional. I'll sometimes do intellectual work, stim, intellectual work, stim, etc. And I'll get much more done than if I am in a public place where I need to act 'normal'.

To me, stimming is a release of stress and also kind of zen centering.

Temple Grandin said she was not allowed to stim at the lunch table, but she was allowed to stim after lunch.

For people with sensory issues (like Carly reports parts of her body felt on fire), stimming can help to relieve sensory issues.)

For the kids who regress when they can talk a little, I can see how it could appear for all the world like stimming is part of the problem and not part of the solution. This is why it's important for those of us on the spectrum to tell parents.

And of course 'normal' people (no such thing as 'normal' anyway and how boring it would be if there was! ) stim by such methods as bouncing or waving a leg during a math test, fiddling with poker chips, or an athlete literally bouncing up and down before he or she goes into the action. But somehow the different methods we use are defined as 'bad.'

I included some of these issues and more regarding stimming in a separate post:
"Stimming is generally positive (time and place)"
http://www.wrongplanet.net/postt198083.html

Last edited by AardvarkGoodSwimmer on 10 May 2012, 7:19 pm, edited 1 time in total.

Thank you all for your replies. It's helpful to get a bit of perspective on the situation.
When I read about ADHD symptoms, I'm constantly thinking "Oh yes, that one fits, and that one, and that one." But when I read the symptoms for AS I'm more like "Yes, I suppose so, No, not really, Hm, just a little bit, No, not that one" etc, which is why I'm wondering. I guess it's possible that we may get a diagnosis of severe ADHD combined with his language problems, because it sounds like the combined symptoms could present in a very similar way to AS. Would that be 'better'? Who knows...

And of course, it's what comes out of this that's more important than the diagnosis itself, since that's how we'll know how to move forward. It's frustrating because he's one of those kids that's so 'nearly there' and we need to know how to get him a bit closer to the finish line. The ADOS (is that right?) assessment happens today and we have a 2 hour (yikes!) parental appointment next week to discuss it. This is on top of the other appointment to discuss the results of his educational assessment. It never ends, does it?

One question - that you may have to put to him and let him think about.
Does being with other people energize him....
... or does he need alone/recovery/sorting/feeling/compilation/assessment/assimilation time after social encounters?

No, I don't think he really does. He does like downtime when he gets home from school, where he'll do his thing on the computer for an hour. Is that what you mean? My other two kids are like that too. Heck, I remember wanting to chill and be left alone for a bit after a long school day. He never spends time alone in his bedroom and is always part of family conversations, even though what he says is sometimes a bit out of context.

Tomorrow he and a bunch of friends are heading to Chinatown after school. This will involve:
1. Social activity with 4-5 people (well-known to him).
2. Public transport somewhere he hasn't gone before (bus & train).
3. Eating unfamiliar food in an unfamiliar place.
4. No schedule.
5. Busy environment, unfamiliar sights, sounds and smells.
6. Handling money, bus tickets etc.
He's really looking forward to it.

From what I've been reading, most people with AS would find at least one of these points problematic, but he's not anxious in the least; as I say, he's excited about a fun afternoon with his buddies. It doesn't sound typical to me.

My son would have no problem with that event, and he's pretty classic Asperger's. In fact, we do exactly that in various different ethnic areas over the summertime several times.

Ok, interesting. Well, hopefully today's test will give us some answers.

I'm thinking more like when my girlfriend invites her aunt over and they occupy house space chatting for hours. I find her aunt smart and witty and all, and I am welcome in their conversations, etc etc.... When Auntie leaves, my girlfriend is all peppy and satisfied with life, and wants to continue the social butterflying with me.... whereas I just want to zone out and bury myself in a quiet place and rebuild my energy, maybe review and deconstruct the morning, before I get involved in the next social interaction, with anyone.

Ok, yes, I know what you mean now. I really don't know if he's like this. I should be more observant. When he comes home from a party (for example) he wants to tell me all about what happened, but will then typically want some downtime. Maybe he is getting his head back in order.

my son is only 6, but he would LOVE a day that you described! IN fact, he loves to take the train with his dad, hold the tickets, he loves to pay for things, I often give him the $ and let him figure it out. I think there is a lot of generalization going on with Aspergers. When I was looking into diagnosis for my son, I ruled OUT Aspergers becaseu of the DSM-IV criteria. When I read actual books about Aspergers, he fits. My son is very mildly effected, but he is effected none the less.