We’ve made a pretty big decision as a family. We decided that it’s time to have T evaluated for ASD (Autism Spectrum Disorder) and if we’re really honest, it’s likely past due. T is six and has been in OT since 3/2010 for his Sensory Integration issues. As he gets older, these issues have changed a lot, but show no signs of going away anytime soon. On the contrary, some of his sensory issues have actually gotten worse. To be fair, we have not been as good as we should be at home with his sensory diet, and we let him have too much screen time… I could go on blaming our parenting for days.
What has led us to seek further evaluations hasn’t really been the sensory issues though. Being mainstreamed into kindergarten from a developmental (read: special needs) preschool, has shown us how different socially he is from his typical peers. We have been watching closely over the past several months, and what we are seeing is a child who doesn’t know how to read people, and thus has extreme problems connecting with them.
T has been having problems with aggressive behaviors at school. When we heard about the hitting and shoving that he’s been doing, we talked both to him and to the Behavior Intervention person at his school. It seems that he has been feeling threatened by the other children. He says that the looks on their faces scare him and that he’s afraid that they are going to “attack him and send him to the ER” so he lashes out first. A preemptive strike, if you will. We’ve noticed this same reaction at home, and the fact that he only seems to be able to accurately read a happy facial expression. Everything else looks angry to him.
T doesn’t seem to have any real friends at school, and the one or two kids that he does play with, often get intimidated by his aggressive behavior, or his very intense need to have them play only with him. So he is very often left feeling like he has no one at school. The Behavior Intervention person at his school points out that he plays alone most of the time, and T tells us that he has no friends. He says that every day when he walks into his classroom there is a chorus of “uh-ohs” from his classmates, and that he feels confused and sad.
Another thing that strikes us as being different from his peers is his inability to join in imaginative play of other children. He has a great imagination when he is playing alone, but he does not seem to be able to extend that to include imagination games that other kids have started. He will point out that what they are doing and/or saying makes no sense, and that it’s just pretend…Or more accurately, “just fiction.”
For example, he had a playdate with our neighbor and she was describing an altercation between her stuffed animals to see which one got to come on the playdate. They “wrestled” for the honor, and the winner won the right to come to the playdate. T just looked at her, and said, “you know that’s impossible don’t you? They are just stuffed animals and can’t fight. You can make them roll around, but they didn’t fight. That’s fiction,” It was a strange interaction. He was absolutely unable to suspend disbelief long enough to join in the fantasy. I’ve seen this behavior many, many times since then, and I’m guessing that if I had been paying more attention I would have noticed it before too.
There are several other reasons we believe that T is on the spectrum, though very high functioning. These are just a few of the things that have stood out to me in the past couple of months. We do not think that getting a diagnosis will do anything more than open up more tools to use to support T, mainly at school.
The evaluation process is daunting, but the result will be what it will be. The most unfortunate part is that we will not have finished the evaluation process before we have to redo T’s IEP. I’m hoping that if he does receive a diagnosis that we can make changes to the IEP as necessary to support the new diagnosis, and get him the extra tools he needs for him to not merely squeak by at school, but to thrive there. So, for this reason, we jump into the unknown territory of the ASD evaluation process.
Comments
Beth C.
Our update:
Today was our first meeting with the Autism Center that will be doing Thomas’ ASD evaluation. The meeting was for Josh and myself to meet the doctor, go over our questionnaires, and discuss out main concerns. The doctor was so warm and receptive, and we felt really comfortable with him, and with our decision to go with that center.
The next part of the evaluation starts next Wednesday. Thomas will have two 1-hour appointments over two days, one for cognitive evaluation, and the second for diagnostic evaluation. After those are done, Josh and I will meet with the doctor again to go over the results. A diagnosis for Thomas will be contingent on at least one other set of testing that we will have done elsewhere, but we will be heading in some direction within the next couple of weeks.
It is both an exciting and scary time in our home right now. Adding to Thomas’ alphabet soup wasn’t something I wanted to do, but in order to get the help he needs we have to have the correct diagnosis. I hate the idea that he will be labelled for the rest of his childhood, at least, but it is necessary.
Tutyfrutyjudy
Your whole family is so brave.
Do take comfort in knowing that you are ultimately helping to give your son and family even more tools and skills to help him thrive. You’re a good mama.
Beth C.
Thank you so much. That is our whole reason for doing further evaluations, to get him the tools he needs. Thanks for the kind words, they are very comforting to read.
Mary
My son is 8 now and was diagnosed with SPD at 3 years old. We are getting ready to go with the further evaluation to see if he is on the spectrum also, by the suggestion of his pediatrician and OT. His social awkwardness and inability to communicate has gotten worse along with a few other things. We are certain he is on the spectrum and I just wish we had started the process sooner. There is a 6-8 month waiting list. So, I know exactly what you are going through.
You shouldn’t have any trouble scheduling another ARC to go over the IEP after you get the diagnosis. I work in the school system in the Special Education department. All you have to do is request it. I wish you lots of luck and that you get the help you need.
Beth C.
Mary– hugs! I’m so sorry about the waiting list, that has got to be so hard! We were lucky to find a private clinic with a great reputation that had no wait time. With T’s trouble at school I was so grateful to have found them.
The two other clinics in our area, both connected to large hospitals, had 6 month waiting lists as well. It is so frustrating.
Thanks for the IEP info, that’s really helpful. Looks like we may actually get a Dx before then, but its nice to know that we can schedule another meeting if we need to.
Good luck to you on your journey!