Sometimes people think I get caught up in little details and miss the big picture.
I say the little details make the big picture.
When it comes to Autism…so much gets lost in the little details that we brush aside, judge as not important to the big picture or trivial. I get picky about language and about being positive about the person.
One of my biggest sticking points is this whole notion that parents should grieve when their child is diagnosed with Autism. That it is normal to grieve the Autism. That it is necessary. That it is right.
It freaking isn’t!
I think nurturing those thoughts is dangerous to both Autistic people and to parents. I get a lot of push back when I suggest that grieving Autism is not okay. To me it is akin to grieving the color of your child’s hair, grieving a lack of athletic prowess, grieving any number of things that are just not okay to grieve.
Grieving an Autistic child is telling the world that this child is not what you wanted. Grieving that you don’t have the normal child that you were expecting. That is very different than feeling unsure how to parent effectively. That is very different than being angry or scared that our society does not accommodate disabled people well.
I really loved Brenda Rothman’s piece, “Autism is Not a Parenting Fail.” Instead of teaching parents to fear and dread the tragedy of Autism, teaching them that it is equivalent to mourning the death of a child with our language, we need to put on a new pair of glasses and look at Autism through a different lens. My favorite part of Brenda’s article is this passage:
“You’ve done nothing wrong. You didn’t cause this. You haven’t failed your child. You were given an instruction manual for a Ford and your child is a Ferrari. So, congratulations! Your child is NOT fundamentally different from other children. You just need the right instruction manual. Parenting your child will be more intense. You’ll need more patience and time. Your child will have intense emotions and needs. But he’ll also have intense curiosity, drive, determination, desire, persistence and individuality. What you’ll need to find is the right fuel, the right environment and the right supports. With those, your child has great potential. With the right supports, he will have a happy and fulfilling life.”
This is the message that we need to be out there. This is what is good for Autistic people. This is what is good for parents of Autistic people. If as parents we are grieving, what does that tell the world about our kids? About Autistic adults?
We cannot afford to overlook the language that we use when we speak about Autism. We cannot afford for the focus of Autism be about parental grief. Our anger and our sadness and our grief need to be directed at the targets which are worthy of it. Those targets should be the ways that Autistic people are disabled by their environments. And we need to attack those targets with ferocity. To disable the environments which keep Autistic people from thriving.
Disable to enable. Maybe that looks like keeping strobe lights out of an environment–flashing lights cause my daughter to have seizures. Maybe that looks like equipping kids with fidgets or bubble wrap in Evie’s case. Maybe some people need noise dampening headphones or even better–turning down the volume in the environment. Whatever. Focus on the barriers to ability that we can knock down. And that is pretty much all of them.
Can we please stop talking about how tragic Autism is for parents? How tragic it is for people who are Autistic? Honestly, it is insulting and offensive. And if you cannot accept your child, unconditionally, without a grieving process for his neurology, hair color, or freckles, then I say you are unworthy of parenthood and unworthy of your freaking awesome kid.
Your kid is Autistic. Get over it. And stop disabling him/her further with your language and grief.
***Editing to ad this excellent essay suggested in the comments, “Don’t Mourn for Us” as it says it far better than I have here. Thanks to “The Caffeinated Autistic” for suggesting it. Her blog is wonderful and worth a read as well.***