Monthly Archives: January 2016

You know what is a weird word? Autism.

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?

I am pissed that ‘they’ say something is wrong with my child!

On January 15, 2016, I was told that my son has Autism Spectrum Disorder.  I set up all the recommended services and made all the necessary appointments.  After that I was lost and that feeling led me to anger.  All these specialists and facilities and no one offered me any comfort.  All they gave me is a label for my child and some instructions.  I couldn’t find emotional support anywhere.  So, I decided to put it all out there and made the following announcement on my personal Facebook page.

“I wasn’t sure I wanted to make the following announcement, but after I realized how difficult it has been to find someone to talk to about this, I feel I needed to share in hopes I can find someone else that knows what I am going through.

Last Friday, my husband and I were told that our son had been diagnosed with Autism Spectrum Disorder. I am devastated. I immediately starting asking myself what I did to cause this, will my son have a normal life, how are we going to pay for all of his services? I immediately started searching FB and the internet to find a support group and I was shocked that I really couldn’t find much. I know other people are dealing with this with the updated numbers with rates in boys going from 1 in 68 to 1 in 44, I believe. I finally found a support group across town. I went on Tuesday. After driving for 45 minutes, I was the only one there. It was helpful but again I am wondering, where are the other parents and if they aren’t reaching out for support, where are they getting it from? I would like to have a play date once in a while where I don’t have to explain my son’s behavior. Don’t other parents seek that out? Does anyone know of a local support group? I need help, I am drowning right now. I didn’t want to say anything to anyone but I am not going to hide this and I refuse to be scared or embarrassed about this. My son has autism, there it is, but first he is my son and a very cool kid.”

I have started getting messages from friends offering support and more resources and it is great.  However, what I need is someone who knows what it is like to be in my head right now.  I need to just let the tears flow.  I even called the organization that diagnosed my son (one of the best in the state I am told) and asked about a parent support group.  They knew nothing about anything of the sort.  What???!!!!  1 in 44 boys and these so-called experts don’t try to help parents connect with other parents!  We have an autism cluster school in my district and there isn’t a parent support group!  My kid has autism and I am pissed off.  I am pissed off that more parents aren’t pissed off and seeking out other pissed off parents!   I asked my husband “where are the support groups in a dark, dingy basement with cold coffee and stale donuts where I can cry and scream without judgement?”.   I told my husband I was so angry that there isn’t any support that I am creating my own support group and it will have an awesome name like “Autism Can Kiss My Ass”.  So, here is the birth of the Autism Can Kiss My Ass Support Group, members 2.  Please join us in telling autism it can kiss our asses.