Why is There Outrage?
There are many problems parents of Autistic children have voiced about this speech RFK Jr made a few weeks ago. You can view the video clip below. They are outraged over his opinions, and here’s why-
RFK Jr. wasn’t Specific About Who He Was Speaking About in the Clip
RFK Jr talks about how Autistic children will never hold jobs, date, get married, or even use the toilet unassisted. He talks about how they are a burden and destroy their families. While I would argue no child is a burden, there is a percentage of parents of Autistic children who I can imagine may feel this way sometimes. You see, RFK Jr. never specified that he was referring to the approximately 25% of children with profound Autism- those who are completely non-verbal, who can’t care for themselves, and who the world is just too hard, so they retreat into their own, safe world. Parents of these children may agree that sometimes it’s too much to deal with, that they would take away their child’s Autism. I feel for those parents because my child was there at one point.
What’s dangerous here is RFK’s use of the word “never”. When we had my daughter’s evaluation, the evaluators told us she would probably never speak and not to expect her to. They said she would need substantial care for the rest of her life. Doctors diagnosed her before the levels came into use, but she was definitely a level 3. While it is devastating to hear that, the worst thing we can do is to believe them when professionals tell you what your child will never do. Had I believed them and didn’t try to help her, she would still be level 3. It causes parents to fall into a pattern of hopelessness over time. “There is nothing I can do so what’s the point of trying?”
Always, always believe in your child, and most important- NEVER give up on your child, even when it’s hard- when both of you are exhausted and at your breaking point, even during meltdowns where everyone is staring and you want to melt into the floor, even when the school district tells you everything your child hasn’t mastered yet. They can’t do it- YET, but they can. Don’t forget that! But parents need to make the effort!
RFK Jr. referred to Autistic Children as “Burdens” and Said They “Destroy” Families
Again, I can see where some parents would feel this sometimes. I’d be lying if I said it never crossed my mind when doctors first diagnosed my daughter.
The danger is that we should never, EVER, view children as burdens. Each and every child is a precious gift from God. He created every child perfectly. When we stop thinking of our children as blessings and start to think they are burdens, not only are we dishonoring God, but our children will pick up on what we are thinking and feeling. They will begin to see themselves as a burden, someone broken that nobody could fix. Depression and anxiety are already high enough in Autistic children, we don’t need to add to it. To describe a child as a “burden” is to say that they have no worth the way they are. That something about them is fundamentally wrong.
My daughter is acutely aware of how “different” she is and understands what people say about her. Nothing I say changes that. Don’t be someone who destroys their self-esteem. Be the person who builds them up, who has their back no matter what. A person they can depend on. Everyone, not just Autistic individuals, needs that.
Also, we need Autistic thinking- probably the majority of tech wiz’s are on the spectrum. We need people who think differently, who can come at a problem with a different viewpoint and see a solution we don’t see. Look at the great innovations Temple Grandin has made in the agricultural field!
RFK Said Autism Was a Preventable Disease
This is dangerous thinking that RFK Jr is perpetuating. Autism is NOT a disease. A disease is something like the flu or measles- something you “catch”. You do not “catch” Autism.
It is a neurological difference in the wiring of the brain. Not wrong, just different. You are born with it. You can not change the wiring in your brain. No one can rewire the brain. It’s just a different operating system. THERE IS NO CURE, NOR WILL THERE EVER BE! He claims an environmental toxin causes Autism, but many people throughout history likely had Autism, according to experts and historians. Mozart comes to mind. Every single Autism parent I’ve talked to, or listened to, even those with non-verbal children, say they would not change their child. Changing their brain wiring will change who they are.
I learned and grew so much as a parent of an Autistic child- she taught me more than I will probably ever teach her. To miss out on all that would be absolutely heartbreaking. The beauty of being still and watching a leaf blow across the yard, or enjoying the feeling of the wind in your face. She showed me how to slow down and enjoy the little things in life that I had been too busy to notice before.
What He Should Focus on Instead
What about the other 75% of children who do not have profound Autism? There are the kids in the middle of the spectrum, like my daughter, who are too high functioning to be considered profound, but not high functioning enough to not need a lot of supports. The public school only has so much money in its budget for children with disabilities. The school system is taking away services and accommodations from children like my daughter- even though they still need them, because school districts don’t have the money in the budget. Fix this! No child should have to go without needed services! There are no agencies around us to help us with therapies, and those we did have have now been cut. Parents and neurotypical children are left to navigate life on their own. Should NOT happen!
On a similar note, make therapies affordable for families. I was lucky in New York that the state paid for all her services through the school district (until they dropped us without warning). There are many states where the state does not cover the therapies and services. The therapies are expensive, especially if your child needs multiple different services. Many parents have to decide whether they pay for their mortgage or their child’s therapies. That is not fair.
Create programs that are for adults with Autism. Our children will eventually grow into adults. Many will need some type of support to live independently and hold a job. That’s not saying that they will never hold a job or pay taxes, but that they need a little extra help to accomplish it. Around here, there is no help for adults currently. There isn’t even much for children. There is nothing in my area to help my daughter, except for myself, and I am not trained to do anything.
Change the DSM-V back to include Asperger’s and PDD-NOS. Those children who would have been diagnosed with those are now being lumped into ASD. Yes, Autism rates are higher because more kids are being put in that category than previously. Logical thinking would say that, you put more kids into a category, that category is going to increase. Take those children back out, your “epidemic” won’t be an epidemic.
We need to advocate for our children and speak out when we see something wrong. Take a stand and tell this man that he needs to do some serious research into how Autistic people and parents of Autistic children really feel!
