Sensory Processing Disorder FAQ's

Some ladies over at DigiShopTalk and I have been talking about SPD, and a lot of really good questions have been asked.  It's a hard to understand disorder, I know, and once that message board thread is long gone, I want to have a record of my explainations about it.  So if you are interested in SPD, click to extend the entry.  (And for everyone else?  Thank you for being patient with me as I talk about it . . . I know I seem a bit obsessed sometimes.  LOL.)

Is this disorder -- Sensory Integration Dysfunction/Disorder, Dsyfunction of Sensory Processing, Sensory Processing Dysfuction/Disorder -- on the autism spectrum?

The therapy practice we work with doesn't consider it an autism spectrum disorder, nor do most of the books I've read . . . most kids with autism HAVE SPD, but you can have just SPD and not be autistic -- a lot of the behavioral characteristics are the same, though, which is why it confuses some people.  Here are quotes from our two therapists:

"To my understanding SPD is a totally seperate disorder. And children with austism have deficits with sensory processing. "

"You are right. Children with Autism almost always have sensory processing disorder. However, if a child has a sensory processing disorder it does not necessarily mean that they have autism."

Can you tell me what led you to believe something was a different about your child?

It's really hard, especially when you only have one child, to know what's just your child's age and personality, and what is a symptom of a disorder. With Jake, it was the compilation of so many things that just made me wonder, and the fact that as he got older, those things I was attributing to age didn't get better. If nothing else, they were getting worse and he was getting NEW, weirder quirks. LOL.  He seemed behind in some things, but mostly he had SO many quirks and acted so odd sometimes, for NO reason.  Any of the things alone would be normal, but all of them all together and over a period of time made me realize he needed help.

The last straw for me was talking to Katie the Scrapbook Lady about her son's history (he has autism) and how much Jake and he were alike. Then I started finding (online) checklists for how to spot autism, and Jake was fitting 50-75% of the things on the list.  BUT as I stated, SPD is often confused for autism because the behavioral characterists are similar.  The lady who owns the therapy practice we work with specializes in autistic children and during Jake's evaluation was 100% sure within 30 seconds of evaluating him that he was NOT autistic, and had him tested the very next day for SPD, which is what she was sure he had.

For more details about this whole process for us, read my entry "The Whole Story."

How can I tell if someone else's child is being bratty, or has a disorder causing the behavior?

YOU CAN'T!  That's the problem.  Please don't ever judge the parenting or a child based on random behavior.  Especially if you don't know someone well.  Because it could very well be that child is reacting the only way his brain is capable of.

Amy commented "The only trouble with SID (similar to the trouble with autism, I think), is that he LOOKS like he is exactly like every other little kid out there, and since he is big for his age, people expect that he will ACT on the same level as those kids. But in some ways, he is way behind. In other ways, he is way ahead. It is hard to explain to people who don't get it."

And that's so true.  I could have written that myself.

It's so frustrating when people don't understand a child's disorder and just chalk it up to bad parenting. Or when your child really does look totally normal and starts acting up -- we get so much less compassion than if he had an obvious problem or deformity. And with Jake, his size is about two years beyond his age, but his communication is a year behind. So basically I have a 4 year old the size of a 6 year old with the communication skills of a 3 year old. And he wants me to hold him and carry him places and boy do I get looks for that! (Ask me if I care, though.)

The person who has helped me the most, actually (aside from Katie the Scrapbook Lady!!!) is a good friend of mine, Jen, who has a son Jake's age. Her daughter is 3 years older than the boys, and she has Downs. Jen knows SO much about therapies and insurance and dealing with the school system, and just dealing with raising a child with special needs in general. And meeting the other parents in the food group that Jake is in is wonderful -- the kids all either have autism or SPD, so to talk with them about how they handle little things is so comforting. And to see other kids acting the way that Jake does makes me feel so much more normal!!!!

Is it possible for SID to be very mild?

Yes!!! We ALL have sensory issues, to some degree. Most of us just find a way to deal with them and they don't affect our lives too much. Some people can't deal with gooey foods. Some people need sunglasses to function when other people are just fine. A personal example, my sister can't stand for people to touch her. So she has an abrasive personality and makes it clear to people to keep their distance. She also seeks out situations and even a job -- cash office, in a room by herself counting money -- where she doesn't have to be around people. Because she physically can't deal with people touching her, and it was only after reading one of my SPD books that she understood why. I personally can not work or think straight if there is music or distracting noise in the background. I actually don't concentrate well if there are people around, either -- I remember in elementary school, even though I had TIME to finish my homework, I would put it away and save it for later so I could do it when I could concentrate! And I have a super-sensitive nose, I can always smell things that other people can't, and smells turn my stomach that wouldn't bother other people.

So that said, where is the line between everyone being sensitive, someone being a little sensitive and maybe needing help, and someone desperately needing intervention? The question is, how is it affecting his everyday life? If it interferes in his ability to learn, to play, and to have meaningful interaction, it's worth it to get the help. Undiagnosed and untreated, SPD problems can cause other learning problems, behavioral problems, and depression -- kids know they are different but they don't know why and they don't know how to cope with the weird things they feel.

There are a LOT of different kinds of sensory processing problems, and no two children are alike. Some are sensory seeking, and some sensory defensive. Some are a combination! In Jake's case, he is tactile defensive, visually defensive, and just a little bit auditory defensive. BUT he is also sensory seeking in a BIG way and has social anxiety and communication problems. Some kids have muscle tone problem, some kids have inner ear type problems to where they always feel dizzy and can't keep their balance . . . there's seriously so many different types of problems, it can't be explained here. All the problems fall under the blanket diagnosis of SPD, but within each category you can have a big problem or just a small sensitivity. For example, Jake is MAJORLY sensory seeking, but just a little big auditory defensive. Through therapy we have really made progress on his social anxiety and his tactile defensiveness. I think in a few years, those last two won't be an issue.

The very best resource is the book "The Out-of-Sync Child." It explains with detail and examples and checklists all the different types of SPD. It's an amazing book to read as the mother of a sensory sensitive child. SO worth the money to buy it.

My ultimate opinion for anyone on the fence about whether their child might have problems?

When in doubt? GET AN EVALUATION. It is worth the time and money just for the peace of mind that having an answer comes with. The sooner you do it, the sooner you can stop worrying if it's nothing, and the sooner you can start therapy if it's something. It's a win/win.

Additionally, keep an eye out for other possible problems.  Stacey at DST commented about her son:

I do think Moms have gut instincts when something is "off" with their kiddos. We took him to therapists, ECI, the pedi neurologist, etc. I had to fight, fight, fight. We took him to the pedi neurologist a year ago (he had just turned 4). He totally failed the neurological exam - couldn't follow simple commands like "do what I'm doing, Colin" and the MD would raise his arms above his head.

Well, a month later, we got him screened during his regular well child check-up and the kid needed GLASSES. He couldn't SEE what the neurologist was telling him to do. He couldn't SEE what all those therapists were telling him to do. So bottom line is, before you spend a lot of money on therapy, etc. make sure you get a TOTAL eval of your child (vision, hearing, physical exam) because there could be something physiological going on, too!

Comments

[Sandi P.]

not obsessed at all...just a very patient, loving, and understanding mother. More moms should be like you. ;)