Below is a blog from a fellow Autism mom. (The link to her blog is at the end.) I love the way she worded this. I am on the same page as she is, even if I have said it differently. I’ve said that I love my son’s Autism, but that’s only because it’s what makes him the wonderful, big hearted, loveable, quirky, strange at times, goofy, hilarious, and beautiful little boy that he is. As much as I love him, I fear for his future and how Autism will effect him and the changes he’ll make as he grows. The unpredictability is frightening. I fear for my son’s safety if he goes somewhere without me, because the adult he’s with might forget that he needs to be held & kept close by so he doesn’t wander off into the parking lot. I fear that he’ll have a meltdown and find a corner to hide in that could be dangerous if in public and I’m not there. My fears are endless…especially when it comes to the future.
“MIKE WAS APPROVED FOR SOCIAL SECURITY SUPPLEMENTAL INCOME!!!!!”
And it sucks – AUTISM SUCKS!! I’m filled with sadness as I sit imagining a life on the $710/month that our country is providing to meet the basic needs of disabled citizens. Even worse, I’m one of the lucky ones – my son was approved on his first attempt. I have been hit with a reality that has shot through my heart. I’m NOT posting about his college acceptance letter – I’m posting about his approval for a life of poverty and a reliance on government assistance.
I know that there are those in the autism community who will attack me for stating that “Autism Sucks,” and I’m envious of their perspective. I’m also wondering if they have blinders on to the challenges facing our family members. Do they know how many adults with autism are wasting away in group-homes? Do they share my fears? How do I embrace a disorder that has caused my son so much pain and struggle? How do I embrace a disorder in a society that does not provide a respectful life to its most vulnerable citizens?
Hating autism is not about hating individuals! It is about hating that individuals are in pain. It is about hating that my son was unable to ask for a drink when he was thirsty. It is about hating that our family members are vulnerable. It is about hating that we must fight for them at EVERY step along the way. It is about hating that they will outlive us.
I am beyond the ability to even imagine or consider what Mike would be like without autism. He was diagnosed prior to his second birthday; I had a few years to dream before the gap grew too wide to ignore. Those dreams are long gone, and I love him unconditionally. I love him, and HE is a wonderful gift, but I do not think that autism is a wonderful gift. I do not want an autistic grandchild, and I do not celebrate when I learn of a child being diagnosed. I know the challenges that come with the diagnosis, and it is not an easy journey. I also don’t feel like my son was ‘kidnapped’ or that there is a typical person inside of him. He is simply my son – Michael, my son, whom I love.
If you are one of the lucky ones, who celebrate autism, I respect your journey. I hope that you will respect mine – especially today, when all I see is an unknown future of challenges. Until we live in a world that PROVIDES a respectable life to people with autism, I am unable to celebrate autism. I’m far too busy at the fight!