Gifted Issues Discussion homepage Forums Twice Exceptional Autism?? Aspergers??

So I had my son tested back in December with the public school system because I thought he was autistic and/or gifted. He took the test, showed as "gifted" and the diagnostician said she didn't suspect him to be anywhere on the Autism spectrum.

However, I am having doubts about her evaluation... I don't know much about autism (other than what I find online). However, he does display some "not normal" behaviors: spinning, arm-flapping, gross motor skills that aren't anywhere near where they should be, flipping out about the smallest things, etc.

My question, should I have him re-evaluated next school year with another diagnostician (he'll be in a charter school in the neighboring community's public school system)? Or should I talk to his pediatrician whenever I get another appointment (no rush)?

I recommend to talk to the pediatrician. Schools are a wonderful resource, but I don't think that this sort of diagnosis, particularly in a gifted child, is the kind of thing they should be making.

Just my .02!
Grinity

The staff in public schools are not qualified to make a medical diagnosis. They will very often miss Asperger's or Autism in a bright child.

With the behaviors you describe, I'd go to a private practitioner (psychologist, neuropsych, or developmental pediatrician) who has a lot of experience with kids with autism, and get a thorough private evaluation. This will give you better information about how to proceed. If the issue is that you also need services (PT/OT/speech) from the school, you can take this info back to the school to persuade them to reopen the case and evaluate again.

You say "no rush"-- but if he's flipping out all the time, he may be under a lot of stress. If there's a chance of alleviating some of that stress, I probably would want to do that.

Thanks everyone! So should I go to his regular ped first to see if she recommends anyone? I don't need a "referral" to see a specialist, so that's not an issue.

The good thing is, at the school they're attending next year, they have a "therapy room" on-site. I don't know if that's different than regular schools, but it's certainly different than they have in the school they attend now.

He's not flipping out all of the time, just in certain occasions.

Thanks so much for your input, I've been debating this for a while (hence the reason we had him tested with the diagnostician in the first place). But ever since he's started other sports other than swimming, I've noticed it even more.

I would get a referral from your pediatrician for a visit to an occupational therapist, neurologist, or neuropsychologist.

I am just beginning this journey myself.

You might also want to pick up a copy of The Autism Book by Dr. Sears or some other book from the library.

If you have access to a developmental neurologist, I would go that route. That may not be an option outside major metropolitan areas, though.

The pede to whom I first expressed concerns told me my daughter was merely "undersocialized because you're a SAHM". (Gee, wonder where her biases lay?) The second allowed as how there might be an issue, and she'd make a referral, but she was mostly only doing it to appease a fussy mom. The behavioral neuro took one look at her, climbed under the table to interact, and three hours later ended the session by saying "oh, heck yeah there's something afoot".

FWIW, dd didn't flip out all the time either. Only when the lawn guys came (she was hugely stim avoidant, though she's far better now that she's older), or when there were dogs. Or bees. But boy, was she spectacular when she did.

And to all of you just starting out on the journey with all this, it really DOES get easier.

Mine too!
Chrys

Thanks everyone. I really, really appreciate all of the advice. I have an appointment for him next Tuesday to see his ped. When we had his 5-year appt in December I had mentioned to her about getting him tested (for gifted), she did a few quick "tests" and said he's definitely bright. It'll be interesting to see how this appointment goes though.

Thanks again, you guys are awesome.

Well, the pediatrician doesn't suspect autism or aspergers at all. She said he may have ADD, but that she wanted us to fill out some paperwork about him and to have his teacher do the same. She also wants to run some lab work to check for anemia, thyroid (he's very small for his age) and some other things. She said that if nothing at all turns up and the tests/papers prove her wrong, she'll refer us to a psychologist (or a psychiatrist?).

Hi kd:

Per the other posts on this thread, I would not be relying solely on a pediatrician's suspicions and instead would be raising my concerns with someone with extensive experience in developmental issues like ASD and ADD (a psychologist, neuropsych, or developmental pediatrician).

Both when we were living in the U.S. and now that we are in Australia, we found that there are often waiting lists for getting in to see the highly recommended professionals. Thus, if you have any concerns whatsoever about your son, it's better to start the process now.

Best of luck & hope you are able to get some answers!

Cheers,

Kristen

Thanks Kristen!

Well, according to the "questionnaire" that I had to fill out and his teacher had to fill out... Mine, yes, ADD/ADHD is a possibility. The teacher's, no, it's not. So the doc wanted to try meds for one week and my husband said NO WAY because "he's a 5 year old boy."

So I don't know what to do now.

I haven't seen the questionnaires for ADD/ADHD, but when we did the ones for Autism/Asperger's, more weight was given to the parents' reponses than to the teachers', when there was a discrepancy. They figure that you know your kid better and in more circumstances than the school does!

As a side note, I can't quite believe that a week would be enough of a trial for any kind of medication they might be considering--does that ring true with anyone who has tried it?

I agree with Kristen-- don't rely on the ped.'s assessment. Our very good ped. just couldn't see DS's Asperger's for years.

You would know very quickly if the classic ADHD meds (stimulants) improve things; and probably also quickly if they make things worse. Be aware, though, that some kids get too hyped up on these meds (think too much coffee, irritable and sleepless). This is all the more true if it's an anxious kid to start with. I would be concerned about giving stimulant ADHD meds to a child who is already underweight, because they can suppress appetite.

Asperger's can look a lot like ADHD; many doctors feel that Asperger's includes a significant attention component, some are willing to dually diagnose. You might want to find a highly trained specialist to help you tease out these issues.

Best wishes,
DeeDee

Thanks ladies. She did give more "weight" to my questionnaire, that's why she wanted to try the meds. She said that we would see an immediate change in his behavior. But since my husband is ADAMANTLY opposed to trying it, I guess we'll never know.

I put a call into the doc today to let her know, she said that she'll refer us to another counselor/specialist if we didn't want to try the meds.

Thanks Lauren, I hope you find something that works for your DS as well!

KD976, I think your DH is not wrong to feel as he does about meds; I know that at that age we felt it was a drastic measure for a small child, and we weren't there yet. Especially since you don't have a solid dx yet, it is within the bounds of reason to be extremely cautious.

Here's a strategic question: how much time does your DH spend with your son? Does he take him to scouts/ supervise him in church or supermarket/ deal with him in situations that require DS to pay attention? If not, you might want to arrange for some of that kind of time, just so your DH has some of the same experiences you have had.

I found that spreading out the responsibility for supervising DS made us observe the same issues, which means we have been able to be more unified when it comes to treatment options. If DH happens to be in denial because he hasn't seen what you've seen, then letting him experience the difficulties might help.

Best,
DeeDee

Another resource might be to join a neurodiversity board to ask others on there what their experience with the medication has been. Based on the topics I've seen, there have been very mixed results, but ADHD meds do tend to cause weird reactions for Aspies unless they are co-morbid ADHD.

If he's stimming the way you describe and has the gross motor deficiencies, I personally would lean more toward Aspie than ADHD (being aspie myself), but you should definitely find a professional to diagnose and not rely on a pediatrician at all. There are very few people who have had any luck with their PCP noticing autism traits or even believing a confirmed diagnosis. It can be especially more difficult to pick up on in gifted people.

I talked to his ped last night about no-meds and everything else. She referred me to a counselor who also works with special needs kids. So I'm going to call his office today to make an appointment. Luckily DH isn't opposed to that, so that's half the battle. I agree that meds in such a young kid is a stretch (for me), but I was willing to try it to see how everything worked out.

DeeDee, he doesn't spend as much time with DS as I do, but in the Fall that will change. Their new school is just up the street from DH's work, so he'll have to take them to and from school everyday. I think that will be a real eye opener for him since he's never had to be on "kid duty" (so to speak) every single day of the week.

I'm very interested to see what this counselor has to say.

You guys are great, again, thanks a million.

That's good, KD-- hopefully the counselor will put you onto a good track.

Just so you are forewarned: A regular counselor or psychologist may or may not be equipped for what you need. Since your DH agrees to it, it may be a good start-- and yet depending on that counselor's qualifications, it may or may not be the solution you are looking for. Give it a go, and keep your eyes open.

We had DS in talk therapy with a regular psychologist for something like a year (age 4-5); after that year the psychologist recognized that she wasn't doing nearly enough for him and got us into the autism clinic of a children's hospital, which is where we should have been all along.

If you're thinking it's ADHD, you may or may not find these resources helpful-- they're geared toward Asperger's/autism:
http://www.aspergersyndrome.org/Home.aspx . There is a Local Resources link where you can search for experienced diagnosticians.

It is hard to get a correct diagnosis for a kid whose smarts can mask the disability, and hard to find the right professionals to help. You may need to use all your parental ingenuity on this.

Kudos to you for persisting.
DeeDee

Thanks, that's the same thing friends of mine with autistic kids have said about the counselor/psychologist. Hopefully just getting the DH to agree to it will help everything move right along.

Hi kd

I recently had my DS 4 tested because of very similar reasons to yours. He was flipping out a lot, tantrums with hands over his ears. The child care centre he went to 2 days a week suggested perhaps autism. We thought a very bored gifted child with possibly aspergers or adhd. He can't sit still, has this thing with his feet so that they need to touch everything so he was showing some signs of being on the spectrum.

We were lucky enough to have referral to a fabulous psychologist who specializes in both giftedness and autism. She said yes on the giftedness and nowhere on the autism spectrum. She expected that any behavioral problems were to do with him being under stimulated. At around the same time we made some changes so he had far more stimulation - he now goes to 3 different schools each week and he's like a new child and the tantrums have disappeared. Like all gifted boys he's still hard work though!

So if your DS has started some of these behaviors since starting at school (I noticed you said he was unhappy at school) it may be that he is so stressed by being under stimulated it's causing him to behave in this way. It may also be adhd/aspergers so it would be great if you could find a psychologist who specializes in 2G to assess him so both possibilities could be considered.

I would say that, from my terrible experiences with a mainstream school system (I go to a school with people with behavioral problems/emotional problems, as I experienced moderate depression and have anxiety, though with both an imaginational as well as emotional overexitability, I'm starting to doubt it), you could talk to a pediatrician, or a specialist. But,in my opinion, what a parent thinks is slightly more valid, because you see your child every day, not just observe them like he's a wild animal.

Thanks! We have an appointment with a child psychologist on Thursday, so hopefully he'll cooperate and "be himself" so the doc doesn't think I'm imagining things

I just want to make sure that the counselor/psych is knowledgable about gifted children. I am not sure if you have seen all of the information about wrongly diagnosing GT's as having ADHD/ADD because of the strong overlap of characteristics. The fact that the ped. right away jumped to that conclusion and recomm. meds is a bit frightening to me. You DC very well MAY have ADHD/ADD as well as be gifted, I just wanted to make sure that you were aware of the high chance of wrongly diagnos. and to find out if the couns./psych is familiar with GT's.
GOOD LUCK!

Up until '08, my pediatricians weren't...all that good. One doctor mistook my seasonal asthma for croup! But since we have great doctors now, I would have to agree with Grinity by saying trust the pediatrician (and your instincts; the insticts part was learned from watching too much "Mystery Diagnosis")! Pediatricians are usually easier to trust, unless they were like my pediatricians from '00-'07, because remember, it's always great to know a trustworthy doctor!

The first meeting went very well today with the psychologist. He was in RARE form, being super ornery and not listening... We're having another meeting next Tuesday to follow up and get his take on what's going on. I did mention that he is gifted, and he did mention how surprised he was that he reads so well...

That's great, KD-- always good when the kids rise (sink?) to the occasion. Is the psych doing a battery of standardized tests, or just getting a sense of your DS through conversation?

DeeDee

LOL! Isn't that the truth... He did a few tests with him yesterday and said he'd do more on Tuesday, he talked with him a bit yesterday as well. Said he'd have a better idea of the evaluations next week.

Ok, so we went again tonight and he did some more evaluations. He said that he suspects he has ADHD, but a mild/moderate form. He said it's hard to determine because he is so intelligent that it's masking some of the "behaviors" of the ADHD. He said he also suspects that he may have Oppositional Defiant Disorder, but it might be easier to diagnose in about a year.

He suggested that we do a trial of the meds plus a strict reward system at home. DH actually is ok with trying the meds now that we've gone this route. He said that he's upset that we know now because, basically, now there's "something wrong". I said that there's nothing "wrong" with him, just something we need to address. I told him that I wanted to get it addressed ASAP because I remember the hell my parents went through (I suspect I also have ADD/ADHD but was never diagnosed) and that I don't want to go through all the crap they went through with me. And I was an only child...

I forgot to add, he had me to an evaluation (I forgot the name of it) and based on my scores asked him some questions for depression. I guess the "cut-off" is 10 and he got 23. He said that it may be because of the negative feedback he gets at home due to his behavior. He said that if we don't address it now, it could become much worse.

KD, that sounds like progress, even if you're not totally sure yet. A couple of things your post made me think of:

(1) Not to scare you, but if your child gets overly hyper, or irritable, or sleepless, that can be a side effect of ADHD meds. Just something to watch for and report back to the doc. It can take a while to get the dosing and choice of med correct and tailored to the child. There are a lot of different meds for ADHD, so it's not a big deal if the first one doesn't work well.

(2) Is it worthwhile (and possible) to schedule a followup with the psych, just you and your DH, to work through the issue of his feeling there is something "wrong" with the child? It's still the same kid, the label doesn't change him, but your DH's feelings can have a huge impact on the child if they're not addressed.

Kudos to you for following through...
DeeDee

DeeDee, thanks for the input. His ped said the same thing when she originally gave me the script for the trial meds. As for a f/u with the psych, he specializes in adolescent/child. Do you think it'd be worth a f/u with him or should I look for someone else to talk to about it? I couldn't agree with you more about the label. I think he's more concerned about "labeling" him for school purposes than himself. Even though "labeling" him in school could work in his favor since it would be addressed?

Our experience is that if the kid is unusual enough to need labeling, then lots of people at school and elsewhere are already noticing he's unusual, so it's not like the label is going to change things much for the worse from a social point of view.

Once you are sure enough about the diagnosis to tell the child, it's also better for the child's self esteem to think that he's got interesting wiring than to think he's a terrible person who simply can't do what others can do but doesn't know why. The diagnosis can depersonalize the challenges in a useful way so the child and the whole family can grasp them and work on them without its being a problem of the "child being bad."

The other thing about the label is that if he's unusual enough to merit a label, he's also unusual enough to need the services that a label can bring at school. The label gives you the legally protected right to an education that is more appropriately focused on the particular child's needs. As long as that education is actually delivered appropriately (and this bears serious watching!)-- that seems to me an unqualified good. It has been this way in our experience with a 2E child.

As for the followup: tricky. Based on the very little I know of your DH, it might be easier to get him to go if it were couched as a parent education meeting with the child psych than if it were framed as a meeting with the adult psych about DH's own issues. He probably wouldn't like that. Right? It seems to me the child psych could probably tell you a great deal about how to manage the diagnosis as parents for the benefit of the child, information that could also help your DH come to terms more gracefully.

HTH,
DeeDee

Thanks so much DeeDee

I totally agree - in fact, the proper label can often help you avoid other, more troublesom labels.

I don't know how I missed this whole thread, but I just wanted to let you know I love how rapidly you are pursuing getting an answer!

Our son was diagnosed with an autism spectrum disorder when he was young and having early intervention therapies helped him incredibly! My husband was extremely resistant to any kind of "label" but he has since come around and is our son's biggest champion.

DH is the one who goes in to the school and has the patience to sit for hours explaining to the principal that DS is not being defiant, DS is not a sociopath, here is what the school can do to make life easier for everyone. DH is the one who checks and makes sure the school is following the IEP, and meets with the teachers individually to discuss what would work best in that particular classroom. For someone who was adamently against labels, DH has turned into an advocate...and our son is thriving because of it!

Now I need to work on getting DH to be a gifted advocate...:) Nan

Nan, sounds like your DH is already a wonderful advocate. What a tremendous gift he is to your DS!

DeeDee

Nan, that's awesome about your DH.

I agree about the labeling. I think it'd be better if he is labeled with the correct label instead of being labeled as a bad kid or a defiant kid or whatever.

It'll be very interesting to see what happens when school starts in a few weeks. This new school has a lot of Sp. Ed. teachers, so hopefully he'll get the assistance he needs to keep his ADHD in check other than what we're doing at home.

I really appreciate all of the input from everyone, you've been great!

Thanks for sharing Nan and especially this part. I find that society is still so anti-labels and especially when it comes to anything on the spectrum that they miss the importance of early intervention.

Kudos to you and your husband.