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Nothing boils my blood more to hear people ask me "is he autistic?" They think he is because they believe Sensory Processing Disorder and Autism (ASD) are one and the same. I could not disagree more.
Autism doesn't "come and go" with sensory events. As we've seen with both boys, but particularly Summy, some days are worlds better than others, but those better/worse days are ALWAYS tied to sensory events. And the swings can be HUGE. Some days he's on task, honed-in and cracking jokes left and right. Some days he's practically catatonic. We have lots more trouble in the winter when they can't get out and get input. Jack's drooling kicks up, he's covered in bruises...but when we get that input, those things stop happening.
I must add the disclaimer that neither of my children has been diagnosed as autistic, so I do not live with autism every day. In my experience as an educator, my autistic students are so much more literal, more concrete. Don't get me wrong, I know Summy can be very literal (ear hats anyone?) but he also has amazing imaginative play schemes, he is able to express his feelings/emotions, ("You are really hurting my feelings and making me sad! See my face?") and he is able to be affectionate spontaneously and often. I am not arguing that some autistic children aren't able to do these things, but from my experiences they aren't able to do them consistently like my boys can. (Or maybe the better way of saying that is "in a way that society expects them to.")
It frustrated me because I "get it" that some (but not all) autistic kids have sensory issues. However I get tired of blanket statements from people that all SPD kids are "on the spectrum." My main reason for arguing this point, besides the fact that I believe SPD should be a separate diagnosis in the DSM V, is that I believe the treatment/therapy model should look different for kids with SPD versus those with autism. From our experiences, you know that the "burst" therapy model has worked amazingly for us. I question if that method would work as well with a child who was diagnosed as only "autistic."
I also have trouble because on a lot of the forums/groups I am in for SPD, most if not all the parents have a kid with autism. Sometimes it is hard to sort the "SPD" stuff from the autism stuff, and often I am left feeling frustrated and unable to connect.
I don't know if kids are being "over" diagnosed as Autistic as some have speculated. Perhaps some of those kids have SPD and have been mislabeled. It will be interesting to see if/when SPD becomes its own standalone diagnosis.
What are your thoughts on the topic? I'd love to hear from you!
12 comments:
I think I know the forum about which you are speaking, since I'm on it too and saw your post and the response. I'm in the same boat -- my son is delayed and has sensory and motor planning issues, but we've been told by all his therapists, SPED teachers, and Dr. Greenspan that he is not autistic. That's not to say he doesn't have loads of issues, but autism just isn't one of them. Just last night he was really upset about something and came up to me and signed crying to show how sad he was. He also is super-affectionate -- one of the highlights of my day is his reaction when I walk through the door after work.
Very good post. It is frustrating that most people think Autism and SPD are the same. It's even worst when Doctors and others do not believe that it can stand alone without any other condition. Then most think its a behavior issue. I will be glad when it is officially a diagnoses.
I agree with you too Meghan. My Sammy is being treated with therapy for SPD but both his OT and his ST do not think it is necessary for us to have him tested for autism. I agree they are 2 different things.
My son has two different SPDs and he is not autistic, nor does he have Aspberger's. He has SPD. The end.
I agree with you!!!
SPD is NOT Autism. Plain and simple. The criterial for diagnosis is very different (including language, social and repetitive behaviors to qualify for ASD). 75% of kids with SPD have it as a standalone disorder according to the research at the SPD Foundation (www.spdfoundation.net).
Go to www.spdbloggernetwork.com or www.sensoryplanet.com and you will find HUNDREDS if not THOUSANDS of familes raising a child with 'just' SPD.
Some of them will get more diagnoses as time goes on, some won't. Same is true for you.
And as for the Autism cliches here in this post - my youngest has Aspergers, comes up with the most amazing imaginative dramatic play scnearios, is the MOST cuddly, loving, communicative of all three of my boys, and is VERY clear and capable of expressing his feelings (so are most kids on the spectrum - you are thinking of thier inability to understand/realte to OTHER people's feelings). Plus, not recognizing facial expressions is perhaps part of ASD, but is more like NVLD. :)
Thanks for sharing!
Hartley
www.hartleysboys.com
I agree. Sometimes I even get frusterated that Aspergers is considered a form of autism. I'd give anything for my daughter to "improve" to the functionality of Aspergers. I think the one thing that autism, aspergers and SPD seem to have in common is that no child with their particular diagnosis has the same *exact* symptoms or characteristics as another.
I read your title, and thought well "DUH!" why would they be the same thing. I've left this post up on my reader for awhile so I could write a good response. But, I can't. So, this one will have to do.
I checked out the 'Bump' special needs board a few months ago, and it was all autism. There is more to special needs than autism.
I am so glad I found your blog. I couldn't agree more! My son is 4 and has low muscle tone. He is a wonderful, bright, inquisitive, affectionate little boy but definitely presents with some sensory challenges (motor planning, coordination, balance etc). We had him assessed early on for ASD at the request of his Early Intervention ST and was told by the developmental team at Children's Boston that he simply was not on the spectrum. His ST didn't agree (don't get me started on her) so we got 2 additional opinions. The latest was with the neuro team at Children's who actually LAUGHED when we asked his opinion. He simply has hypotonia. Almost all kids with hypotonia have sensory dysfunction (particularly vestibular and propriocentive). My son is very social (particularly with older kids and adults), highly verbal and communicative (maybe talks too much?), and has no odd or repetitive behaviors aside from his need to move around more than the average child. While it was a relief to hear from the docs, I'll be honest - the comments from the "others" are killing me. Why do people assume that if a kid is a little different, that he MUST be autistic? While SPD is common in kids who are on the spectrum, it does NOT mean that kids with sensory issues are autistic!! I find myself constantly having to educate people, including his preschool teachers - and it has reached the point where it is physically and emotionally draining. I actually reached the point where I had to put myself in therapy to help me cope. Finding your post was like a breath of fresh air! I'm so sorry you are dealing with the same sorts of issues and comments - but it's nice to know I'm not alone! Hang in there!! :)
Hi Tbonegrl. Just wanted to say thank you for your blog. We are (still) in the process of finding out what is going on with our four year old daughter.We didn't agree with previous diagnostics (in the spectrum) and we continue our research. SPD fits so well, we'll check it out for sure.
Thanks again
Kevin and Amélie, NB Canada
Yup...we are in the same stinking boat..with a girl no less! From professional experience and personal SPD is not autism. Never in a million years would I have thought that I would be on the other side of the fence....We are currently embarking on some SPD journeys to help work thru the SPD. Best wishes to you....
Soon we will have SPD in the DSM!
I think a lot of OT folks know this but many doctors are still behind the learning curve. My sensory daughter is NOT autistic but my sensory son has some markers so we will be screening him now that he is older and has had 16 mo of growth since his last eval. The one thing I worry about is that he is high functioning and perhaps may need interventions but not be an obvious case of autism bc of his strengths. I remember, as a kindergarten teacher, that many other faculty members had no idea what SPD was until MY kids were diagnosed and I shared the info with them. All of a sudden they understood that a child was not necessarily autistic if he or she flapped arms or hated loud noises.
My heart is very heavy about this. My son has spd that involves a lot of motor coordination. He flops around like he's drunk. The doctors and my councilor know he's not autistic. But it's the damn teachers. Yet they still don't want to help him. My son has tons of friends, is invited to everyone's parties, they come to his. He understands jokes, has empathy, has theory of mind, understands idioms. He's certainly read my facial expressions. He can hold conversations and not just about 1 subject. Really, what else is left? He's a little quirky because of some dev delays . I've moved him to a school for kids with LD and I think now someone will understand him. Thinking of taking him to Star Center. What is burst therapy? Have you ever told someone your kid has SPD and they look at you like your nuts. Or they think your in denial. I keep telling myself in a few years none of this will matter, but now I cry.
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