Getting a Sensory diagnosis

iVillage Member
Registered: 10-23-2005
Getting a Sensory diagnosis
4
Sat, 01-16-2010 - 11:52pm

So I've got a few questions. My son became affected by autism in June. He turned 2 on Halloween. He's had sensory issues since infancy. At first, he refused baby foods (still has mushy food disease, as we like to call it), and we noticed more and more issues as he started crawling, then walking. He puts EVERYTHING in his mouth, and it's possible that he has PICA. Anyway, everyone (the SLP, the O/T, the P/T, the ABA folks) acknowledge that he's got a sensory problem, but I'm wondering who would actually formally diagnose a Sensory Integration Disorder. Also, is there any benefit or downside to having an official diagnosis?

Thanks in advance for any info!!

Serena




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iVillage Member
Registered: 09-12-2008
Mon, 01-18-2010 - 11:59am

My son is also autistic and puts everything in his mouth. He does not have PICA because he does not eat what he puts in his mouth. Although, I am sure he has eaten a few things we don't know about. People with PICA mouth and swallow dirt, metal, money, paper, hair, etc. Your son could just have a oral sensory craving.

Because your son has a dx of autism gaining a sensory dx really won't make a difference. Most kids that have autism also have tons of sensory issues. It's all tied to neurological delays. As long as his therapists are working on sensory things with him and you..then I wouldn't be too worried about a dx.



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iVillage Member
Registered: 10-23-2005
Mon, 01-18-2010 - 4:45pm

With the PICA, it's hard to say, because I rarely allow him to get to the point where he's actually able to eat anything. I can tell you he puts everything from toys to rocks in his mouth. He chews up books and tears off the pages and spines with his teeth. The paper and cardboard from the books is mostly for chewing, I think. It's fairly easy to get him to spit it out. He's only been in the sandbox at the park once since being affected by autism, and he did, in fact, eat sand. The first time he filled his mouth, I figured he'd learn his lesson and spit and gag. Instead, he chewed it up and grabbed another handful and shoved it in his mouth as well. I was pretty bummed. I washed out his mouth (which he liked less than the sand), and haven't put him in a sandbox since. He prefers having hard plastic or especially metal things in his mouth to chew on, so it doesn't give him much opportunity to actually eat those things (since they're larger toys...too big to swallow). The older he gets, the more confident I feel in saying that it may not be PICA, but since he was happy to eat sand just a couple of months ago (at 2 years old), I can't say for sure.

He doesn't have an official autism diagnosis yet, but there's no doubt that he's autistic. He's been evaluated by the school district autism team, and he qualified for services under the ASD umbrella. They actually considered him severe, but they're morons (but I digress). LOL I got tired of trying to convince people that my son was autistic, and just went ahead and started him in ABA in November. He's doing fairly well, and he starts an intensive preverbal program that follows more of a floortime model tomorrow, in addition to the 15 hours/wk of ABA. That'll push him to just under 30 hours per week of therapy, including the hour and a half with the P/T and the hour with the O/T.

Anyway, here's why I was asking. My pediatrician (who I love dearly, and who has personal experience with autism) seems to think that we're dealing more with sensory issues than we are with autistic issues. Both of Michael's physical therapists think that we need to focus first on the sensory issues, or he'll never be able to attend and therefore begin to speak. So.....I was thinking that if he's really in need of serious sensory stuff right now, is there a big bad expert other than just an O/T or P/T? I guess that when I think of the biggest baddest expert on autism, I'd have to look to a neurologist with an autism background or specialty. I was wondering if there's a similar medical expert for sensory processing disorders, and if so, if there are larger scale things that can be done besides just doing an hour a week of O/T.

Also, as he enters in to the school system (he'd hypothetically start PPCD as early as October), will a Sensory Processing Disorder diagnosis get him any helpful services, or are people going to be clueless as to how to meet his needs?

Sorry, Jessie, I know I've asked a ton of questions. Whatever info you can pass along would be appreciated.

Serena




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Registered: 09-12-2008
Mon, 01-18-2010 - 7:11pm

I will try to answer all your questions...but my son is gunning for the computer. And you know how autism meltdowns can go :-).

It would be helpful to have a dx of SID if the school is not going to help you. OT is the one that works best with sensory issues. But make sure they are trained or have knowledge of SID. The school will usually only treat sensory issues if they are interferring with the child's ability to learn. Which it sounds like that may be the case for your son.

We have an OT consult where Gabe goes to school. We use her for ideas to help him participate better with peers and sit at circle, stay focuses, etc. Gabe's sensory issues are not as severe as they used to be. At least not at school. He seems to hold it together rather well at school and then struggles at daycare and home.

We have an official dx of autism from a neurologist. She also dx'd Gabe with global apraxia and hypotonia. Gabe's psychologist only dx'd him with autism. Our school says he isn't autistic, but that's a whole other story!

The therapists are right about the sensory stuff. Once you get Michael's sensory issues under control you will start to gain speech. That's exactly how it happened for Gabe. We coupled speech and OT to really help him get his sensory issues under control.

I would keep chugging away with the PT and OT. It sounds like they have a good understanding of Michael and what his needs are.

Feel free to ask as many questions as you like. This board needs some action :-) and I am happy to help anyway I can.



Jessie mommy to Gabe(4.6 years ASD/CAS/SID)and baby Zane



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Jessie mommy to Gabe(5 years ASD/CAS/SID)and baby Zane (1 year old)



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iVillage Member
Registered: 04-07-2003
Tue, 01-19-2010 - 12:54pm

Hi-
I also wanted to add to Jessie's answer. We have had similar experiences with Kaia. Although she is not on the spectrum, she may well have been when she was younger, she was so late on speech and her hypotonia was hindering her abilities in so many ways.

In our school district sensory integration disorder gets you nothing, even if it is affecting other areas. they only treat the area affected - for instance Kaia is very sensitive to sounds and can get very distracted even by the softest sound, they wouldn't help her at all, but if she didn't learn to read because she was distracted at that point of the day (even if it was because kids were playing outside the classroom window and had nothing to do with an actual reading problem)... then they would help her for reading, its crazy.

For Kaia once we gave her OT 5-6 times a week it changed everything for her, her speech exploded, her whole outlook on everything changed, it helped her socially, eye contact,body movement etc..... OT has been amazing for her and I wouldn't stop giving her as much as we can until she is much older.

We got her SID diagnosis from her Developmental Ped, we took her to this particular Dev Ped to rule out Autism because I just felt we were missing something important, and in the end it was sensory for her. Her first Dev Ped didn't even mention SID and that really pisses me off now knowing that he knew that is what it was but because it is not a "real" diagnosis yet he wouldn't even discuss this and I didnt know any better at that time. Now I know that I have to be on top of everything to make sure Kaia gets the help she needs.

Good luck with everything, you sound like you are on the right track!

Alison

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