This is going to sound strange, but a few weeks back I realized I no longer knew the definition of autism. I have probably used the word a thousand times in the past few months but for the life of me could not remember what it actually met. I felt like I was in a scene from ‘Tommy Boy’ when the two get high and start saying that road is a weird word. Ro-ads. Autism, Au-tism. I looked at my husband and asked if he knew the definition, he was also at a loss. I had to google Autism and read the definition. We were so focused on the evaluations, appointments, symptoms, etc., that we forgot what we were even looking for.
I only remembered this today because my son had his first speech and OT session with a private company. As the OT started going over the results of his evaluation, she said she was surprised my son came up ‘normal’ in so many areas and that she thought there was a mistake. Most of the sections pertained to sensory issues. My son has had very few issues in this area. This has been part of the reason we were skeptical about the ASD diagnosis. I mentioned to her about having to look up the definition and she said it doesn’t seem to apply to my son. She then goes on to tell me that sometimes a lack of response to sensory stimulation can be a ‘red flag’ of autism. What? So, you are telling me it is a red flag if the child is affected by sensory stimulation and if they don’t react to stimulation. I am not a doctor, but that just sounds stupid. Again, I am getting angry. To me it seems like this woman is determined to make sure my child fits under this DSM-5 umbrella. The other organization that gave the ASD diagnosis stated he was ‘at risk for ASD’. I asked why they put the term ‘at risk’ in front of the diagnosis. I was told that was because the parent evaluation I completed did not match up with their results. It seems the parent evaluation is weighted heavily in diagnosis. I asked in their opinion, not considering the parent portion, “is my son autistic?” She said he was.
I know we might be going through some denial right now. However, I was very honest in all of the parent evaluations. I really wanted a definitive answer as to what was going on, if anything. I just wonder why not one person from either private organization, the school district, or the support group facilitator has questioned if my son is being diagnosed correctly. There have been several people that have questioned the push for the ASD diagnosis of my son…and they were all medical doctors. When I first mentioned that two pediatricians were not concerned about autism in my son to the school district speech pathologist, she said that pediatricians are not capable of seeing the warning signs because they don’t spend enough time with the kids. Okay, using that same logic, the school district and private organizations have only spent a couple of hours each with my son, why are they so qualified and certain of the diagnosis after such a short amount of time? I am getting a gut feeling about all of this. I don’t know exactly what my gut is trying to tell me, but I know something isn’t right. While I lost focus and forgot what autism even means, isn’t it possible that all these so-called experts are too focused on making my child autistic without considering other possible explanations?