Sensory - hand, leg flapping issue?? Do we need evaluation?

[Arcadia]

My just turn eight boy has sensory (hypersensitivity) issues since birth. Food textures, clothes texture, ambiance all affects him more than my younger who is hypersensitive mainly to sound. He goes in a long meltdown. Unstructured stuff/activities gets him overexcited too.

 

The only "problem" we have is that when he is overexcited/overwhelmed, he would flap his hand and legs uncontrollably in a asynchronous and jerky fashion, and his mouth would be open in a howling kind of fashion but without sound. He has done that since he was a toddler. Now that he is 8, big for his age and in 3rd grade, we do get weird looks in public.

 

Wondering what this is called and do we need to get an evaluation for him? Also is there any theraphy that might help?

 

ETA:

Found this checklist (PDF form, 8 pages) from spdparentzone that was easier for me and hubby to read.

He is in a virtual academy (public) now and was in a B&M school for K and 1.

 

ETA:

The reason we are worried about evaluation and theraphy is because I can't drive (visual impairment). Hubby is worried that if we do the evaluation and could not follow up with the suggested/recommended behaviour theraphy, than it would be a "black mark" on his school and health records. If we can avoid a private evaluation than that would eliminate the worry about records.

The other reason is that he has been able to self moderate as he gets older. So the incidents are getting less and less. So the urgency is not there at the moment. We are still keeping a lookout as Lucile Packard Children's Hospital is near us and they have studies from time to time.

[Reya]

it's called self-stimming or -stimulating. It is often seen with hypersensitivities and has a heavy association with autism. At times, it is associated with hyPOsensitivities and has an association with mental retardation.

 

Best thing to do is give him a more socially acceptable means of self-stimming. A textured ball he can roll in his fingers or something like that.

 

My autistic brother settled on a barely-audible hum and occasional hand-rubbing at 25.

[Reya]

Oh, and both my brother and I had clothing and food sensitivities. I wouldn't wear jeans until 5th grade, and the wrong texture of food, even if I LIKED the taste, made me vomit uncontrollably. Hated tags, etc., and sock and pantyhose seams drove me wild. Loathed school because all the rooms were so freaking BUSY--the stuff on the walls, the kids moving around. I grew out of most of it, even almost all the food sensitivities.

 

My brother, actually BEING autistic, became more rigid as he got older rather than less. But he's generally figured out socially acceptable solutions for every occasion.

 

My daughter got just the clothing sensitivities. My son got none of the above.

[Arcadia]

it's called self-stimming or -stimulating.

 

I read up self-stimulating on the autism website and my boy's action is more like someone getting an adrenaline high from an arcade game. A lot like being over-excited. I have looked at the autism and ADHD checklist and he does not have those symptoms. For SPD he only has the hypersensitivity symptom.

 

His paediatrician is aware that there are "issues" just that we can't put a name to it. I would have to video him when he does that and see if his paediatrician can refer him to the "correct" department. His teachers are all aware just that they have all accomodated him without a 504.

 

The only problem we have so far is when he gets that excited in public (kids events, storytime...) and might hit the kid next to him with his flapping hands.

[wapiti]

I'd get an evaluation from an OT who specializes in SPD (see, e.g., http://www.spdfoundation.net/)

[Arcadia]

I'd get an evaluation from an OT who specializes in SPD (see, e.g., http://www.spdfoundation.net/)

 

From your link page,

 

School Age:

___ My child is overly sensitive to stimulation, overreacts to or does not like touch, noise, smells, etc.

___ My child gets stuck' on tasks and has difficulty changing to another task.

 

This is the two items in the whole list that he has problem with. Since it does not affect him academically, we would go by referral through his paediatrician and go from there. He would be closest to Sensory Modulation Disorder (sensory over-responsivity).

[FairProspects]

From your link page,

 

School Age:

___ My child is overly sensitive to stimulation, overreacts to or does not like touch, noise, smells, etc.

___ My child gets stuck' on tasks and has difficulty changing to another task.

 

This is the two items in the whole list that he has problem with. Since it does not affect him academically, we would go by referral through his paediatrician and go from there. He would be closest to Sensory Modulation Disorder (sensory over-responsivity).

 

It is incredibly likely though, that the OT will see things that you may not have noticed because you accommodate them at home or at school, but he/she may be able to give you concrete suggestions that will lead to an overall decreased anxiety & more calm for your child. Both my parents and many other adults missed all the signs for ds, fwiw.

[wapiti]

From your link page,

 

School Age:

___ My child is overly sensitive to stimulation, overreacts to or does not like touch, noise, smells, etc.

___ My child gets stuck' on tasks and has difficulty changing to another task.

 

This is the two items in the whole list that he has problem with. Since it does not affect him academically, we would go by referral through his paediatrician and go from there. He would be closest to Sensory Modulation Disorder (sensory over-responsivity).

 

I haven't looked at the symptom list in ages, but all the behavior described in your OP is what I was focusing on, including the being overwhelmed and the reaction to being overwhelmed. An OT is the type of professional I'd be looking for, for an evaluation and/or treatment. OTs through the school district usually do not have the proper facilities to address SPD (an OT gym) even if they are knowledgable - not all school OTs are. I'd only bother with the referral from the ped if there's a shred of hope of insurance coverage (insurance coverage for OT for SPD is not typical). Whether an evaluation and/or therapy would be worth the cost depends on how much impact these behaviors are having in daily life.

 

Books to check out include Sensational Kids and The Out of Sync Child.

[Arcadia]

Thank you for your advice.

 

, but he/she may be able to give you concrete suggestions that will lead to an overall decreased anxiety & more calm for your child.

 

That is kind of what we are hoping for by getting an evaluation done. Our relatives have all noticed and have been asking us what is the cause. His teachers are accomodating it as an over-excitability.

 

I'd only bother with the referral from the ped if there's a shred of hope of insurance coverage (insurance coverage for OT for SPD is not typical).

 

We would need a referral from the ped to get the evaluation covered by insurance, as in our out-of-pocket would be much lower. Than we will decide if we could afford OT out of pocket since our insurance is a scrooge.

[Crimson Wife]

According to our integrative pediatrician, systemic yeast infection can exacerbate stimming. Here is a good article on yeast (it's geared for parents of autistic children but is applicable to those with SPD as well).

[Reya]

It's still self-stimming. He just doesn't have to do it constantly. Hand-flapping, ESPECIALLY with the mouth position, is a classic self-stim.

 

Just because it's "associated with" doesn't mean that they HAVE to go together. People thinking that everyone who ever stims is autistic is why tons of kids who aren't AS at all are getting put on the label--especially when the kid stims and is MR.

 

Try to see other activities that he can do to get the outlet he needs.

 

I could video my next-door neighbor's kid doing EXACTLY what you describe almost every day. (In his case, it's MR-related, not hypersensitivity.) I can't actually find a good video of it online. The ones I can find are of low-level, background stimming, not the very excited stimming that you're describing, but I assure you, it's still stimming.

 

I sat through many, many, many, many, many hours of it as a child!

 

A lot of the SPD checklist that was linked has lists of things that happen when hypersensitivity is also yoked to poor executive function (which is a nice way of saying "self-control!"--not saying this to be mean--my autistic brother had very poor executive function). If he only hand-flaps when very excited, he doesn't have poor executive function.

[Reya]

Autistics who self-stim can do it CONSTANTLY, at a low level rate. That isn't typical for non-autistic kids.

[Arcadia]

It's still self-stimming. He just doesn't have to do it constantly. Hand-flapping, ESPECIALLY with the mouth position, is a classic self-stim.

 

Try to see other activities that he can do to get the outlet he needs.

 

Thanks. At least it is easier to read up when we know what it's called. So far we have not figure out how to divert that energy. He does that for less than 2~3 mins when it happens. He hyper focus on anything that is his interest. At first we did think of ADHD but the ability to hyper focus is the only thing both boys have on the ADHD checklist.

 

If he only hand-flaps when very excited, he doesn't have poor executive function.

 

Both my boys motor skills are closely monitored by their paediatrician as they walk "late" at 17 months. So far they are on target for milestones or just behind by a month or two.

[FairProspects]

Both my boys motor skills are closely monitored by their paediatrician as they walk "late" at 17 months. So far they are on target for milestones or just behind by a month or two.

 

 

Yes, and that pattern of development is also classic for SPD.

[Arcadia]

According to our integrative pediatrician, systemic yeast infection can exacerbate stimming. Here is a good article on yeast (it's geared for parents of autistic children but is applicable to those with SPD as well).

 

Thanks for the link. His stimming does not exacerbate when he has hives from contact allergy. It is interesting though and something I will look out for.

 

ETA: my boys go to the ped under Palo Alto Medical Foundation.

 

Yes, and that pattern of development is also classic for SPD.

 

They miss qualifying for OT evaluation because they only miss milestones by a month or two.

[FairProspects]

They miss qualifying for OT evaluation because they only miss milestones by a month or two.

 

Do you mean OT at the school? That is the same excuse I got from the school, but the private eval went very differently.

[Arcadia]

 

Do you mean OT at the school? .

 

No, OT evaluation referal from the pediatrician. They miss so slightly that their first pediatrician was not willing to refer as she thinks insurance would kick a fuss. We change pediatrician in the same medical group and the 2nd ped was more willing to refer if we want an evaluation done. Our insurance just need it to be a referal to cover their share of the cost. His issues has been on file since he was a year old so the 2nd ped don't have issues referring.

 

When he was in public B&M school for K and 1, his motor skills was on par so no request from teachers in that area. School was so structured he did not have problem with it.

[Crimson Wife]

 

Do you mean OT at the school? That is the same excuse I got from the school, but the private eval went very differently.

 

Yes, my little one does not qualify for OT through the schools because she has "scattered" skills and the ones that are within the normal range apparently cancel out the ones where she is far below :glare: However, our neurologist was able to gain approval for private OT through our insurance with a hypotonia diagnosis. The only local OT clinic that accepts our insurance does cycles of 6 months on/6 month off to manage their wait list so DD won't have OT again until next summer, but it was very helpful.

[Reya]

Try various "fidgets" for him. Eventually, he might find one that works. You can look up online to see what others do. It gets out the impulse while looking less "weird."

 

For kids who stim while sitting and trying to work, weighted blankets can be extremely calming. :)

[psychmom]

I know I'm late replying to this, but I was doing a search through old threads and came across this. My dd8 has similar symptoms, and I found out a more accurate diagnostic term (than stimming): complex motor stereotypies. Its also called Primary CMS if not associated with autism. You can google it, and the Johns Hopkins neurology dept. has good info on its website. There is also a Facebook group dedicated to this issue. You can watch videos of other kids with it and see if it seems similar to what your son does. Hope that helps!

[Arcadia]

I know I'm late replying to this, but I was doing a search through old threads and came across this. My dd8 has similar symptoms, and I found out a more accurate diagnostic term (than stimming): complex motor stereotypies. Its also called Primary CMS if not associated with autism. You can google it, and the Johns Hopkins neurology dept. has good info on its website. There is also a Facebook group dedicated to this issue.

 

 

Thanks so much.

It look almost exactly like the boy playing the computer game on youtube. I read the John Hopkins webpage and I have not outgrown my hair twirling habit which is under common stereotypy. I though it was just a bad habit from boredom.

He stops when he is aware of his actions so hubby is reluctant to try therapy. We will have to find out more and see what would be best for him.

[Mom22ns]

So, were you ever able to get the evaluation? You really need one. An evaluation by a developmental pediatrician or an OT will give you so much more information and specific ways to help. Flapping is going to become a big social hinderance as your son gets older. Your dh needs to overcome his own reluctance for therapy. I don't know if it is the expense or the idea of labeling that he fears, but your son needs you to step up and advocate for him here. Help is available. There is no need to struggle through on your own. The flapping you have described is not just a bad habit that needs to be broken, but is a neurological response.

[*Michelle*]

Thanks so much.

It look almost exactly like the boy playing the computer game on youtube. I read the John Hopkins webpage and I have not outgrown my hair twirling habit which is under common stereotypy. I though it was just a bad habit from boredom.

He stops when he is aware of his actions so hubby is reluctant to try therapy. We will have to find out more and see what would be best for him.

 

I read this as I was twirling my own hair. Looking at the info from JH, I run the gamut of common stereotypies: nail biting, rocking, hair twirling. I can't get to sleep at night unless I rub my feet together. It's weird to look at that list and see myself in it, especially since I've never been considered anything by NT. My husband had a ton of sensory issues when he was little and still has some now. It seems like our middle son has gotten a lot of quirks from both of us.

[hunterhomeschool]

OT's are NOT QUALIFIED TO DIAGNOSIS ANYTHING. (They can help with therapies, and can be more targeted in their recommendations if a diagnosis is in place.) Do yourself and your son a huge favor and get him tested for Autism Spectrum Disorders whether or not he exhibits "all of the symptoms" (symptoms can progress and get worse with age and often new ones also develop.) by the top autism experts in your state (or a neighboring one). These experts are often connected to the State Medical University. Do the testing while your son is still in public school, ask for (demand if you have to) ASD testing going through the "proper channels" via your school's Special Ed dept. The testing can be very expensive and is usually poorly covered by medical insurance, BUT if the child is in a PS, then the school district must pay for the testing... this is a Federal regulation.

 

High functioning kids with an Autism Spectrum Disorder rarely have "all the symptoms" or are otherwise "normal" in some areas.

 

Another thing you can have checked out (and your pediatrician can have this testing done) is DNA testing yourself and your son for Fragile X syndrome, as there are some similarities between autism and fragile X.

 

I grew up in an autism family, I am the oldest of 5 kids (only girl). Both my 1/2 brother and my step-dad are on the Spectrum, as is my son and my husband's nephew. All of them are different and all stayed under the radar for a long time due to their high functioning form of the disorders.

 

Just don't rule it out until you have some testing done, okay.