Today on Autism Awareness Day, I’ve noticed a lot of uproar from the autism community about how children on the autism spectrum are portrayed.
Many parents who have severe children on the spectrum are asking the public to stop associating their children with geniuses and people of hidden talents.
They are saying it hurts their cause.
And that it possibly negates the day-to-day caregiving struggles they must endure.
From a parent’s perspective, I somewhat disagree.
I fight hard every day to get people to see that these children are human.
That they are equal humans.
People that have a voice regardless of whether they actually use it.
Trying to bring positive associations with the cause feels like an uphill battle.
A battle that I share with you all on this journey.
How hard it is.
How expensive it is and the ways it has changed our lives for better and worse.
When I tell people that my kids are on the spectrum, it hurts us.
And I sometimes find myself not telling everyone because of that.
Two years ago, a summer camp tried to turn my stepson away at the last minute the week before he was scheduled to go because they required him to have an aide in order to attend.
This was an NJ Perform Care approved camp and since he had graduated from having such assistance in every other setting and was reading two grades ahead, his mother had never applied for an aide.
We had advocates call the camp and even his caseworkers and they would not budge. After reaching out to an attorney, I decided to give that camp one last benefit of the doubt and I called myself.
All I did was confront them that they were discriminating against a child with autism on the basis that he could not grow as a person. I pleaded for them to just give him a chance and should they find that he truly required 1:1 assistance than we would understand but to not even give the kid a shot is pure discrimination.
I remember how happy he was that I got him back into that camp.
And you know what?
He was fine.
He didn’t need an aide and had an incredible two-week experience.
I actually read about that camp in the news recently and how they partnered with Perform Care to provide aides for children with disabilities free of charge so they could access their camp experience. It made me happy to know another parent would no longer have to argue the way that I did to get their child included. That the camp was capable of growing too!
Having two kids who struggle this much has taught me a lot.
Specifically, it has shown me a side of the world I hate.
A side that shocked me in a society so focused on civil rights.
It inspires me to try to change the world we will leave our children in someday.
This will probably get me a lot of backlash from my fellow autism moms but please hear me out…
I support the TV shows and celebrities who show us the best results side of autism because my children are not less than.
Neither are yours.
I would rather have people assume that they’re awkward geniuses than monsters because that is the other stereotype we have to battle every day.
It seems to be one or the other with no in between.
But I can tell you one thing that we can all agree on: There is no easy autism.
Even shows like “The Good Doctor” show that kid’s struggles. How he melts down and can’t get past things. How his colleagues don’t respect him because he has autism.
Amy Schumer said it too before her husband was diagnosed—that their relationship had more challenges.
I don’t think that anyone is glorifying the disorder.
In my own experience, I have found that society is quick to say that our kids need special classes, hours and segregation.
That they don’t belong around their typical peers.
All the things that hurt my family.
Kids like mine are fully aware of their differences.
They know when they are being excluded.
They want to be part of the world.
They want to fit in and be typical and they struggle.
My kids do not belong separate.
They should not be forced to sit at home because they have meltdowns or their stimming makes people uncomfortable.
This is what I fight for.
The more people that the outside world associates with autism is where the true awareness happens—on all sides of the spectrum.
Many of us truly know that it is not all awkward geniuses out there, the other images going around are just the opposite. I can’t tell you how many times I have heard someone say that non-verbal autistic children are not intelligent.
Clearly, we advocate against the ignorance.
Many people with autism carry multiple labels. Some carry intellectually disabled. But that is very different from just autism. Some carry diagnoses of physical ailments, again, that is different from autism.
I know many may disagree with me but I think that any person who brings a positive image to this community helps every child overcome the worst stigmas that come to mind when you say the word “autism” out in public.
For me, it is about the children who know that they are different.
Who need the outside world to associate them with a positive image and give them a chance outside of our protection.