Wanna know a secret?
Asperger’s Syndrome Disorder was never a topic I wanted to write about. Until my son graduated from high school and started working. That’s when I discovered that what’s in place for young adults on the autism spectrum transitioning out of high school into the work place
kinda really sucks.
That pissed me off.
I’d been parenting for almost 30 years. Part of me wanted to stop. Part of me knew that just as my son was transitioning into a new space, I’d have to transition too.
When my son graduated from high school in 2005, he had two goals. To get a job and buy a car.
And guess what?
Back then, he wasn’t on the autism spectrum. He had a mixed bag of diagnosed developmental delays, all of which had been dutifully noted and addressed in 12 years of Individualized Educational Programs (IEP) that started with a Committee for Special Education Meeting (CSE) in August. One month before he started kindergarten.
Because he’d been “red-flagging” developmental delays since he was 3 years old.
Re-testing to find out what (if any) adult services he’d be eligible for changed his diagnosis to Asperger’s Syndrome Disorder. Not such a big deal. We thought.
That diagnosis made him eligible for vocational support offered by numerous adult social service agencies. That was good. Until it wasn’t.
Here’s another secret.
Adult social service agencies can themselves be hobbled by bad business practices. Which you’d think they’d be legally (if not morally) obligated to reveal when approached by potential new clients. At the very least, if an agency is in crisis – about to fold/go out of business – they should be upfront about that.
Something as simple as, “We’d really love to work with you but, unfortunately, we can not take on new clients at this time.”
But they said nothing.
By the time we realized that the agency we’d contracted with to provide job development and job coaching to our son was out of business, our son was 3-4 months into a job that he was woefully unsuited for. My husband and I guided him through the series of steps he needed to take to get himself out of this minefield into a better job.
No secrets this time.
Having a job always makes it easier as you’re looking for another (we didn’t let him quit). When you’re offered that next job, employer number one receives two weeks written notice.
For the next 10 years, we stayed far away from agencies like this one while I tried to live through my biggest secret.
Wanna know my best kept secret?
I was scared.
I was scared because even though my son was working, he couldn’t break out of part time jobs. I didn’t think that cycle would ever end.
I was scared because I was tired of parenting. I didn’t want to have to keep taking the lead to find programs, services and whatever else was out there because by now, my son had an Asperger’s Syndrome diagnosis.
This diagnosis didn’t scare me. Being tired scared me.
As I was wrapping my brain around new vocabulary and searching for quality supports for my son, there were days when I wanted to crawl under my bed and suck my thumb.
And, that scared me.
I was scared because I felt like I was the only parent like me. When I (finally) reached out to a local parent support group, I found a vibrant organization with a 10 year history now on the cusp of planning for those transition years after high school. And, I’m not so scared anymore.
Today, I know a better secret.
Wanna know what that secret is?
There are no secrets and it’s okay to be scared.
Parents of adults on the autism spectrum don’t own that dark space under the bed where we can furtively suck our collective thumbs. We’ve got a lot of company. All you have to do is turn on the news or scroll your Facebook feed.
Better yet, take a walk in your neighborhood and talk to some of those parents whose kids played with yours when they were all in elementary school together. You may be surprised to find out that lots of “adult kids” still live at home for all kinds of reasons; that the job market’s tight all over – lots of young adults are working two and often three jobs just to make ends meet; that your neighbor two houses down hasn’t seen her 17 year old daughter in over a week. That neighbor across the street? When she was diagnosed with breast cancer, two of her adult “kids” moved back home.
So, go ahead and be scared.
But don’t stay there too long. If the only way you can stop being scared is to get really pissed off, then get mad. Get mad at the statistic that insists 80-90 percent of adults on the autism spectrum aren’t working or are under-employed. Get mad and help do something about it.
That’s what I’m doing.
And that’s why I’ll be shifting my focus to blogging for parents who are like me. With kids who are 10 years younger than my son.
Because I can help them.
Using everything that I know, I’m writing about what I’ve learned in these past 10 years about parenting during my son’s transition years after high school one guest blog post at a time. Because I truly believe that there are no secrets. There are only people who know something that you don’t. If I can help you and you can help someone else, we can change the world.
Judging by the over 3,000 social media shares for one of my guest posts over on Think Inclusive: 10 Surprising Things Parents of Autistic Grads Must Know, I’d say I struck a nerve with other parents.
Before we part company, here’s one last “secret.”
Change for young adults on the autism spectrum is being driven by parents – especially by parents who belong to parent support groups. Pay close attention to groups that started 10 or more years ago. Here is where tomorrow’s solutions for autistic adults are incubating. And here is where you need to be.
As a writer, I focus on what I’ve learned as a parent: the transition years for adults on the autism spectrum (for parents) because of what I didn’t know when my son graduated from high school in 2005. My mission is to “leave no parent behind” as those of us with adult children (18 and older) on the autism spectrum challenge ourselves to INSIST on the best for our “kids.”
The best way to find out what when my next guest blog post is published is to subscribe to my new e-newsletter Helping Adults With Asperger’s Syndrome.