Never Say Never. Autism and Adulthood.
By Kim Stagliano
Hi, friends. Thought I'd provide an autism-adulthood update. My daughter Mia aged out of school in June. Here's what I said four years ago.
"Mia will NEVER ever go to the XYZ Center for a day program. Never. Over my dead body!"
I might be getting old, but I ain't dead yet!
And Mia is indeed going to the XYZ Special Needs organization, which has been in business for decades, five days per week as a member of not just one but two day programs. The first is a relatively new program.
INSERT TIRE SCREECH SOUND: But Kim, you said this organization is decades old? How can this program be new?
Pull up a chair.
This program focuses on AUTISM. The XYZ Center has catered to special needs for decades. But the autism programs are relatively new.
INSERT HEAD SCRATCH SOUND HERE: But, Kim, why are the autism programs new?
Grab an adult beverage.
The programs are new because the population of adults with autism is starting to explode with the early 1990s birth cohort aging out of school. This is AMERICA the beautiful. Land of the newly minted adults who struggle to speak. Home of behaviors. US of Autism.
I would never compromise privacy by snapping a photo of the folks who ride the bus with Mia, so here's a brief description. Five or six adults, male and female alike, all over the age of 50.
Her bus-mates look like this (stock photos from Internet.)
And this.
Mia looks like this.
The folks on the bus talk a bit to me when I say hello. One day one of the women helped Mia with her seatbelt. I always ask them how was their day. They came before Mia. Who will come after?
Kim Stagliano is Managing Editor for Age of Autism.
I was wondering if there's 2 forms of autism. One form is where people appear to be different from an early age and don't have many physical health problems but still have the autism symptoms. Another form is when there is normalcy or at least close to it and then one or multiple regressions. This type of autism is where the child has many numerous physical health issues. Since both end up having the same symptoms but manifest differently, what do you think is the difference?
Posted by: curious | August 03, 2016 at 10:15 PM
Kim, Thank you for telling it like it is. I'm glad Mia has been shown kindness by others in her program. She is beautiful and she has a real spark!
Posted by: AutismGoAway | August 03, 2016 at 05:48 PM
Great article Kim as always. The life our children live the way we all live ours we know it was never ever meant to be the way it is, and most of us have no experience of disabilities in our families and I can hardly remember seeing a disabled person 2 -4 possibly when I was younger.I wonder when the puppets in power will realise that they are now ploughing more into special needs programmes teaching with supervision kids/adults how to fry an egg, than they are into Harvard, Oxford and all the other places of world acclaim academic learning.
MMR RIP
Posted by: angus files | August 03, 2016 at 04:20 PM
I am so sorry Doris, one hurts the soul, two - three- is just I am so sorry.
I thought I just had one and then the other was a above average - well she was, but she has a mood disorder - Surprise!
Posted by: Benedetta | August 03, 2016 at 11:25 AM
Kim, thanks for sharing. I would love to know what other options Mia explored with you before deciding on the XYZ Center. What is she doing in her current programs? In an ideal world (you know, the one CMS and ASAN and AAIDD live in, not the real world the rest of us live in) how would Mia prefer to spend her days and evenings, and what do you think it would take for that preference to be possible? Mark
Posted by: Mark L. Olson | August 03, 2016 at 11:09 AM
This article spoke to me and in fact is me. I too have a daughter who aged out three years ago which was a horror with our XYZ day program also having been in existence for decades now having to expand it's practice in order to accommodate the exploding now adult autistic population with their behaviors and difficulties adjusting to a new world after growing up within the enclosed and protected school environment.
I believe that we as parents come to depend on that bubble for all the years our kids attend school so much that when the time for transition comes we too are in shock but as always must hold our breath look up to our higher power for strength like we have for years and push forward.
I am now preparing for a second child to age out next year (yes, I have two on the spectrum) and the only saving grace is that his Sister paved the way.
I know new horrors will come but as always I will hold on, look up to my higher power and prepare for the unexpected.
Posted by: Doris | August 03, 2016 at 09:27 AM
When I see a group of special needs adults out in the community, I always observe them and find those that are stimming are the young people in the group. Those whose behaviors that indicate they are less likely to be autistic are the older ones in the group. But this is all a coincidence because there has been no increase in incidence.
Posted by: Nancy | August 03, 2016 at 08:46 AM
Not that you can tell what a person with autism looks like, but it looks like you think that most of the older people on the bus has something else other than autism, or communication disorders (which will be the label of some coming later on). You have included pictures of smiling - friendly people.
Posted by: Benedetta | August 03, 2016 at 06:41 AM
I hope that Mia is happy.
I know about never look at the future when they are young. It is terrifying for parents with disabled kids. Even with a talented child we don't know what the future will bring.
In 2000, I and all of the parents in Saginaw, Michigan with a child in special education was invited to a big meeting. We did not really know what it was about.
We found out is was about careers, in which one lady held up her hand and said she thought she was at the wrong place - she said she and her son was just trying to get through the fifth grade; not through the next 10 years. The speaker was really nice and said that if she thought this was a mistake that it would be okay for her not to attend. So, she and her son got up and left.
After she left, he said that she could not have given a better introduction to what they were trying to do.
He said if your child is average, talented - and a senior in highschool, they still do not know what they want to most 99 percent of the time, and for a parent of a child with a disability where the future is really uncertain it is terrifying.
Posted by: Benedetta | August 03, 2016 at 06:35 AM