The "A" Word

Sumner's results from testing and my meeting with the psychologist were surprising and yet not on Friday. Sumner took the ADOS and his score was a 1, with 7-8 being the diagnosis level for him to be considered autistic. She just kept commenting on how delightful he was one on one, and he was really excited about an abstract book she showed him that is geared for older children. She did note some issues with facial expression, and saw more behaviors when she observed him at daycare, but it is very clear he is not autistic.

That being said, she confirmed in a very strong way what we already knew: his sensory scores remain off the charts. She said "he has sensory processing disorder, and generalized anxiety secondary to the sensory issues." SPD is not yet recognized in the DSM, which makes things more difficult from a school-standpoint. Luckily, he has qualified and is on an IEP for the next few years, so for now we don't need to worry. Sumner is proof positive that a child can have sensory processing disorder and not be autistic. As for attention issues, she saw them, but is hesitant to diagnose ADHD at this age. We'll revisit it down the line if need be.

In some ways I was surprised, in others not. I felt in my heart Summy is not autistic. It would have been easy to get an Aspergers dignosis because it would have made the school-side easy. But in other ways I am deeply thankful that we can truly know what exactly is going on with him to better tailor therapy.

Summy has autistic-like traits. The psychologist said that they come out when he is sensory overwhelmed. We will continue to try to make sure his sensory needs are met at school so that he can learn and thrive.

Leap of faith

Tomorrow Summy has surgery. It's not the surgery itself I am worried about, he's having his nose cauterized and it should be easy.

It's his anxiety. I wish I could ease it. He talked through the surgery with Jack all night. (Jack had the same one last year.)

Say a prayer for Summy that it goes well and is relatively easy for him.

Today Sumner had the ADOS. (I believe this is the name) it is a test to see if he has Aspergers. We will have results Friday.

This picture is Sumner going off the diving board. He has made some amazing strides this summer: diving board, water slide, buzz light year, dumbo, and Aladdin's carpet rides. A haircut with buzzers. And tomorrow one more challenge.

SPD is NOT Autism.

There I said it. It might be unpopular, you might not agree, but I am living a life that is telling me otherwise.

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!