Gifted Issues Discussion homepage Forums Twice Exceptional Pursue OT eval or not? suspect SPD

I am going to be making an unexpected trip to the States and I’m wondering if I should pursue an OT evaluation for DS2y4m. It is something we have to pay for privately, so I’m trying to weigh the benefits vs the cost. I’m wondering if the OT is really going to see enough of his true behaviors in an hour to give us an accurate picture of what’s going on and what will help. DS is very verbal and active with me and DH, but extremely shy, clingy, and upset when he’s around strangers. My ultimate goal is to learn more about the input he needs so that I can provide activities at home to help with his sensory seeking, food avoidance, self-regulation, and meltdown problems. I’ve been suspecting sensory processing disorder for awhile, but at times I wonder as well if it might just be giftedness, intensity, and OEs.

Please share your experience with me… what did your diagnosis process look like, was it more than just SPD and/or giftedness, what clued you in, how old was your DC, and what should I look for in the therapist who does the evaluation?

Somerdai, in our family's experience an OT is the wrong place to start for something like this; I'd get an appointment with a neuropsychologist.

We saw an OT when DS was 3 (symptoms like your DS's) and were told he was just fine; she was simply not qualified to see that he had an autism spectrum disorder. Between this and our school district's refusal to evaluate him, we lost a few years of early intervention.

Since you're not local, it seems all the more important to see the right professional first and not waste time...

DeeDee

I agree with DeeDee. I would start with a Neuropshycholgist. So many SPD symptoms can be symptoms of other issues. An OT is not qualified to tease that out and make a determination. A Neuropsychologist would offer more "bang for your buck".

Hello Somerdai.

I'm looking forward to any suggestions and advice that you receive. I was about to post about my DD2.5 year old who has sensory issues. She has extreme food avoidance, and will only eat pureed baby food or crunchy foods by hand. She will not touch anything that has a squishy or liquid texture to it.

We have been through feeding therapy (until our insurance ran out), a dietician (since she only weighs 23 pounds), and had an OT evaluation. The OT evaluator said that she was the highest testing female that she has ever seen in terms of motor skills and coordination. She was at the level of a 4 year old. Therefore she did not qualify for OT, even though she was extremely below average on the sensory section of the test. According to the OT person that we saw, they deal with the motor issues in getting the food from the plate to the mouth. Since that was not our problem, we were denied OT services. She tossed us back to feeding therapy. Sigh.

Our pediatrician also sent in a request for a Developmental Pediatrician evaluation for DD. However that was denied as well by the Developmental Pediatrician, based on a questionnaire that we (the parents) filled out about when she rolled over, walked, spoke her first words, etc. She hit all of these milestones at ridiculously early times.

DD is fairly outgoing and social. She plays well with other kids her age. She reads facial expression in books, and understands the emotional component of stories. She just has Sensory Issues.

I struggle with the same question of whether it is a fundamental problem with development, or tied to gifted over-excitabilities. Either way, it makes life difficult. Her older brother, DS11, is a DYS and has similar (but less severe) sensory issues.

What kind of food avoidance does your child have? And what do the sensory seeking behaviors look like? Or direct me to an older post where you have discussed this? Has anyone else received OT for a purely sensory issue, when there was not a motor issue as well?

I would love to compare notes and trade any advice or suggestions with you or other parents. Sometimes the best strategies that I have learned have come from this board and parents who have BTDT. Sorry I can't be of more help, except to commiserate.

I agree that a Neurosychologist or a Developmental Pediatrician is more likely to be able to tease out these complicated situations than an OT, (although some OTs with backrounds in 'Sensory Integration Disorder' are excellent) the bottom line is that if a child is gifted in someways, it is very difficult for any professional to fully tease out what is going on. Even though the people who post here on this board 'get' 2E kids, we don't reflect the general level of understanding of 2E in the U.S. If the Eidies are taking patients they are a good bet. Likewise any of the co-authors of 'MisDiagnosis and Dual Diagnosis' book.

I've been reading 'Bright not Broken' and it looks like there is a wave of folks who think that ADHD is really part of the Autistic Specturm, just that the ADHD kids get blamed for their behavior while the ASD kids get understanding for having brain dysfunction. I'm not quite ready to agree, but I do wonder if there are a whole bunch of kids who are using their above average intelligence to compensate for ASD-like difficulties to the point where they don't qualify for services that they actually need.

We came in through the special needs door, with an early diagnosis of NVLD, which didn't seem to help, but at least it pointed us in the direction of OT, age 7, which helped quite a bit. At the time I was only vaugely aware of 'Gifted Issues' but had been doing way too much unconsious compensation just based on my own memories of being different. The OT eval took a while, but it was obvious that DS was quite behind in certian tasks and his year of OT appeared to help tremendously.

For all the folks who have been told crazy stuff by one OT, I'd recommend to look for one the specializes in pedicatric sensory intergration and try (at least by phone call) again.

Best Wishes,
Grinity

Our DS9 (2E, Asperger's) had significant food issues. For him, the cause is not primarily sensory, but rather anxiety; novel foods made him anxious, so he restricted his diet. His anxiety about food goes up and down in parallel with stress and anxiety in other areas of his life. However, we have made huge progress in this area. We had to work on flexibility in other areas of his life before we could tackle the food issue-- it took a lot of doing, but he eats well now.

Feeding therapy programs vary widely in their quality. I'd give preference to one that is multidisciplinary (includes a team of OT, GI, etcetera, so you know you aren't missing something).

Around here it is no problem to get OT for feeding alone without other motor issues; again, though, not just any OT has the expertise to actually succeed in this. We know of one truly qualified OT for feeding in our reasonably large city, whom we found through a specialty feeding clinic.

Ultimately we got much further on this problem through behavior therapy than through OT. The successful OT had not just regular OT training, but also quite a bit of knowledge about behavior therapy; and our separate behavior therapist (not an OT) got us the biggest gains of all.

DeeDee

Anyone who thinks that ASD kids normally get understanding rather than blame hasn't visited many schools... or talked to the gifted summer camps or private schools that won't accept these kids.


Yes-- true in significant numbers. 2Es on the spectrum are typically diagnosed late, and it is much harder to get them appropriate services.

The idea of "OEs" (it has never been proven that OEs are real to my satisfaction) makes this problem worse by taking symptoms that are truly interfering with the child's life and development, and writing them off as quirks of giftedness, which can further delay treatment.

DeeDee

If there was an 'agree' button here, I'd be pressing it!

Strangely, if seen plenty of situtains where the idea of OEs has been helpful to families, especially if Mom's OEs are different from kid's OEs, when the OEs weren't interfering with the child's life EXCEPT that they freaked out the parent-in-charge. (this doesn't speak to if the OEs are 'real' or 'statistically provable' just useful as an idea)

And I've seen just as many examples (usually where Mom's OEs line up with the kid's OEs and we Moms say 'oh that's normal, no on likes to walk around with the seams of their socks wrinkled up - yes, that was me and my DS) where true interferance with the child's life and development was ignored and brushed aside because gifted kids are expected to have OEs. (Even in families that haven't heard of gifted or OE - fi there are enough siblings and cousins then it starts to look normal, yes?) I'm just very grateful that my DS got a chance to have the OT - and I wish it was earlier - and that he seemed to take a giant leap forward while doing it.

Another "agree" button from me.

The first time I received the suggestion that I should take DD in for an eval was when she was 3, but pediatrician said she was much, much too young. She was so bright and therefore "quirky". But when "quirky" gets in the way it needs to be investigated.

I am biased but I think 2Es truely get the worst of all worlds - they often are shut out of gifted programs because of something about them (behavior, etc.) and the typical public-school pull-out is more for the 1E gifted. 2Es don't necessarily qualify for support for their other needs because in many cases they need to be failing their grades to do that, and because so many 2Es have such high IQs they do compensate.

Even if they are seen or written off as quirky because they are gifted, when they are with a group of 1E kids they seem very different, and everyone can see it, especially the kids. The hardest part, I think, for their self-esteems is how hardly anybody understands them.

so that's my soapbox speech for today...early evals with high-repuation folks, if you can swing it.

To me, this does not read as SPD, necessarily, so not sure the OT eval is the place to start. So I agree with PP. Some things about OT evals, at least in my experience, that might help you.

First, the SPD aspect of the OT eval is primarily based on a checklist filled out by the parent on some specific questions. The therapist then compares your answers to the "normal" answers to see if your child scores outside the realm of "normal" or functional sensory processing. So, for example, many people or kids have sensory aversions, but it may not be interfering with their lives and so is not really SPD.

Second, the OT eval is really designed to determine if OT will benefit the child. They usually then recommend a certain number of sessions and set certain goals, each of which to be re-evaluated when that time frame is up. If you are not interested in doing the OT, I am not sure that the eval would be worth the expense. It is really in the therapy that they get to know the child and can provide the kind of info that you are asking about. So, for example, the eval is not enough time for the OT to suggest a sensory diet designed specifically for your child. That is developed over the course of the therapy sessions (although, they may have some very helpful general suggestions). SPD manifests very differently in different children so it takes time to learn the specifics of the individual.

So the neuropsych eval is probably a better choice. Regarding SPD, I found this site to be very useful www.sensory-processing-disorder.com
HTH!