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.