Autism Awareness Month is winding down. For us, every month is Autism Awareness Month…but I did think there was a tremendous amount of coverage which is always a good thing.
The coverage IS a good thing. But in my mind, the scope of coverage needs to change. It’s one thing to have show after show focus on children with autism, early interventions and the impact on parents having a child diagnosed the spectrum. But what about what happens next??
These amazing, struggling kids are going to be teenagers. They’re going to be adults. And how are we going to support these families?
Scotty is about to be a teenager. Soon, he’ll grow facial hair. How do you teach a kid with sensory issues to put a razor blade to his face and shave? How do you teach him that he’ll need to wear deodorant? How will he deal with surging teenage hormones?
In a few years, Scotty will be an adult. Where will he live? Will he have a job? Who will look after him when time moves on and his parents are older? I know that these are questions that everyone asks about their kids but to a parent of an autistic child, these are loss of sleep questions. These are all consuming questions. These are haunting, everyday questions for families of autistic kids.
If you reread this post – you’ll see a multitude of question marks. To me, that signifies what Scotty and my sister – Christine and Cuy – and all the other families of autistic kids face – so many question marks.
What can you do?? Make EVERY MONTH autism awareness month. Be aware. Donate your time and your money to the cause. Give a mom a knowing look of support when her kid is having a meltdown. Demand to your local goverment reps that funding is needed now and it needs to continue for ALL ages of kids and adults on the spectrum. Tell them that waiting lists are no longer unacceptable and that you won’t stand for it. Get involved. Be heard.
BE AWARE!
(This was what my sister discovered last Sunday am…in case you forgot the words to Green Eggs and Ham…have a read!)
Thanks for writing in Christine. I think you hit the issue on the head right here. So many autistic adults will test over the IQ levels – it just is not the proper way to judge who needs services and who doesn’t.
Sara, my son is 15 years old and also lives with autism (and attachment disorder, adhd, developmental coordination disorder, brain damage due to birthmom’s prenatal choices, etc). Nice to “meet” you 🙂
As a single parent who ended up having to leave my “other career” due to my son’s needs, I’ve been exploring my son’s adulthood options for a number of years. Where I live, IQ is the cut-off for whether or not someone qualifies for adult services. My son’s IQ is too high, yet his executive functioning makes each day a challenge for him. It is highly unlikely that he will ever be able to manage living on his own even though he usually presents fairly well to folks who don’t know him well. He will be able to stay in a program at his school until he is 21, but after that the only supports he will have are his general physician, his mental health worker who will meet with him maybe once or twice a month, possibly a proctor for a couple hours a week…and me! That continues to leave me out of the job market and in the low-income category.
Some of us are starting a major letter-writing campaign and will be advertising in the media, etc.
That thought is in my head every. single. day.
Children with autism will done day be adults with autism.
And then what?
That’s why I have to keep my focus here and now. When I think about my gorgeous baby boy having struggles as a grown man – my heart hurts a little. Then I get scared. Then terrified. Then overwhelmed. Then I bring myself back to right now and enjoy my LITTLE BOY.
Those pics of Scotty brought tears to my eyes – brilliant!
You’re so right, Sara – the necessary support for all these young people will become paramount sooner rather than later. Let’s hope the ball is rolling now, and won’t lose momentum.
I love the letters on the floor… oh my! Bright guy. Love it.