Not even a year ago my daughter was diagnosed as on the Autism Spectrum. They gave me a diagnosis with levels. As if they can quantify some measurable ability in her. Since then, and even for some time before her diagnosis, I was working on learning what I can about Autism. One thing I have learned is I am not an ‘Autism Mom.’
I, unlike many people I know, did actually grow up with some good exposure to kids and adults with special needs. But, that exposure in my past was mostly to those with Downs Syndrome. I actually have quite a few chromosomally enhanced friends. I did not know a ton about Autism. I did have a few autistic friends but not so close that I ever really understood. I still was very naive after my daughter was born about Autism, signs of Autism, and how I would recognize it.
I especially did not understand signs of Autism in girls. So as multiple people suggested to me that my daughter should have evaluations for Occupational therapy, then special needs preschool, then for Autism, at first, I denied. Not out of some fear of a diagnosis but I just did not understand. I thought of the stereotypical signs, and my daughter was not showing those signs. Little did I know, Autism manifests very differently for girls.
As I tried to learn about Autism and how to parent an autistic child, I joined a few Facebook groups. Some specifically mothers of autistic children, other groups of the #actuallyautistic community. What I have found is there are so many parents out there that take their child’s diagnosis as a terrible, grievable, life altering event.
I have not and will not grieve over the fact that my child is autistic. Why? Because she’s not dead. I may have had expectations that need to change but there’s no need to grieve over expectations. Honestly, it just shows how naïve I was going into motherhood in the first place.
As I learn from these communities in Facebook I learn about these arguments between parents of autistic children and the actually autistic adults and I do what I can to realize I should be listening to the actually autistic adults. I am not autistic. No matter how much I read, speak to others, and try to understand, my brain just does not work like my daughters does. I should listen to those who do understand and are also neurodiverse.
For that reason, I am NOT AN AUTISM MOM. I cannot and should never take on my daughter’s diagnosis as if it is now a part of my own identity. It’s not.
My advice to any parent beginning the journey after an Autism diagnosis.
Learn everything you can about Autism and realize no one child will be like another. The spectrum is not linear and there is no one “look” to Autism.
Be willing to discard or change any expectations you had. It may be hard living in an unknown. Unknown if your child will speak, unknown if your child will be able to move out as an adult, live on their own, marry, have kids, but you also do not know if they’d want any of that for themselves anyway. Take life day to day and set the goal of wanting your child to be happy and on their own terms.
Sarah
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