Back again after a couple of years, still not sure about son

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anguslairdmcangus
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26 Sep 2017, 9:01 am

So...we just moved to a new town, and yesterday--after meeting our 8 y.o. son for about 20 minutes when he was in a state of high anxiety over a black eye from a scooter accident--his pediatrician told my wife that she believes he is on the spectrum. Ugh. It came somewhat out of the blue, and I'm reeling today.

We've always wondered, but he seems to be a classic "borderline" case. Last year, we had a full neuro workup (with ADOS, I believe), and it came back with no diagnosis, but ADHD and some OCD tendencies.

On the plus side:

No language delays--verbally fluent
He has friends and is pretty good in group situations (birthday parties, playground, boy scout meetings, campouts, etc.)
Does pretty well in school
Is in a mainstream 2nd grade classroom with minimal support--in fact, we had to fight to keep the IEP
Sleeps well, eats well, and is generally a pretty happy, healthy guy
Expresses affection frequently (but appropriately)
Seems to be socially aware in that he cares what others think of him
Curious--asks lots of why and how questions and carries on good conversations
Has never had a regression

On the negative:

Can be rigid in his thinking
Misconstrues social signals at times
Has an issue with defiance and tantrums. This is getting better but is still not age appropriate. Up to about a year ago, he would hit my wife when he was angry. That has pretty much stopped. Now, it is more verbal defiance.
Obsessive about certain topics (i.e., Mario, Pokemon) and lately has started obsessively hand-washing and worrying about contamination

He did so well last year that his OT's "graduated" him. They did not believe he was on the spectrum. I'm pretty sure his teachers at our old school felt the same. We have a "no ASD" workup...But now this new pediatrician (and she is a developmental specialist) is convinced that he is HFA.

I had gotten very "comfortable" in thinking of him as ADHD/OCD, and now I'm back in a world of confusion and worry. I know that in the big scheme of things, our challenges are minor, but this kid has my whole heart. I'm just so worried about him and his future.

Over the years, I have obsessively filled out various assessments (Childbrain, CARS, CAST, etc.). He always comes up short of clinical. On Childbrain, he scores between a 26 and 37, for example. On CARS, he's around a 19. CAST, about a 7 or an 8. ATEC, between 10-15.

What do you all think? Is the new ped right? Are we ever going to have clarity? Will things continue to get better?

@kraftiekortie : you were very helpful a few years ago when I first had these questions. You seem to have a good understanding of both children on the spectrum and worried NT parents. If you're still around, I would love to hear from you.



kraftiekortie
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26 Sep 2017, 12:54 pm

Like you said, he's a "borderline" case. There are probably some clinicians who will believe he's on the Spectrum, and others who don't think so.

Many "normal" 8-year-olds have certain compulsions (e.g., "step on a crack, break your momma's back"). Perhaps, the handwashing is a little bit overboard, though. Many kids are obsessed with germs and "cooties."

Many kids his age are obsessed with things like Pokemon. As long as it doesn't interfere with his school and peer relationships, I don't find that to be pathological.

Usually, the "defiance" doesn't come until he's a bit older.

I wouldn't base my way of relating to your kid on any diagnosis. I would base it on common sense.

He's 8-years-old, and he of normal cognition. He, with your help, should really seek to lessen or eliminate the tantrums. He should be encouraged to behave appropriately. I would strongly discourage him cursing at you; I would put him on timeout automatically should he do this.



anguslairdmcangus
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Location: kentucky

26 Sep 2017, 1:31 pm

Thanks, kraftie. Good advice and insight from you, as always.

He started on Zoloft last week. We already see diminished obsessiveness and rigidity. The defiance, while not entirely typical, is getting better all the time. Two years ago, he was hitting my wife when he got angry. Last year, he hit occasionally and was verbally quite defiant. Now, he has occasional episodes of verbal defiance, but they are rare and of diminished intensity. I think we are on the right path. We do set firm boundaries with him, and he is responding to them.

My wife spoke with our original Developmental Pediatrician this morning, the one who diagnosed him ADHD and ruled out autism. The doctor re-iterated that she and her staff had done a thorough evaluation and ruled out an ASD diagnosis based on his history of play and their own observations. She was surprised that anyone would attempt a diagnosis based on a 20 minute visit with a child who was in high distress. She feels quite strongly that he does not meet the criteria for an ASD diagnosis.

In the end...what has changed? Nothing. He continues to make progress but also shows some "borderline" behaviors and thought patterns. We love him "to the moon and back," and he knows it. What's more, he loves us and tells us so all the time. We are very, very blessed. I know this, even though I worry all the time. That is my own issue.



ASDMommyASDKid
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26 Sep 2017, 3:00 pm

A good piece of advice I learned from this board is that you can still always try the strategies people suggest for autism to see if they work. It is really hard not to fixate on getting the absolutely correct diagnosis and sometimes for various reasons, it doesn't happen, or it takes a long time.

The higher functioning you are, the easier it is to appear NT or NT enough to avoid diagnosis, and that can persist for a few years or maybe even forever, if you develop the coping skills faster than the demands on you increase.

At points where the NT kids develop faster and the demands increase faster, than autistic kids tend to be able to keep up, are when you may (or may not) have to revisit it. I don't know if going to the original diagnostician is going to be especially helpful in that, if the case is borderline, I think it would be unusual for them to second guess themselves. So that result is not surprising to me.

At the end of the day, the issue is going to be how well your child is functioning in his environment and that is what should determine what you try. Defiance, by the way is not necessarily something that autistic people are not able to express -- some are compliant and rule following by nature, but others are not. Ff the rigidity is strong enough, the compulsion or sensory issue severe enough, or they think something is unfair, or they simply can't, they will not comply--and if they have the verbal skills, it absolutely will manifest that way.

Whether your child is autistic, NT or somewhere on the border, there will be progress because a developmental delay does not equate to zero progress.