Transition to Adulthood

Alice in Wonderland had a fascinating exchange with the Cheshire Cat:

“Would you tell me, please, which way I ought to go from here?” Alice asks.

“That depends a good deal on where you want to get to,” said the Cat.

“I don’t much care where–” said Alice.

“Then it doesn’t matter which way you go,” said the Cat.[1]

Or as we say in Maine, if you don’t know where’ you’re going, any road will get you there.

As tempting as it is to start with “how” we transition our kids with autism to a sustainable adulthood in our communities, we have to start with what. What is your vision for your child’s adulthood? What is your child’s vision of his or her adulthood? If you don’t have a what, there’s little point in having a how or a when or a where.

It’s reasonable to ask why: why cast our adult kids with autism out into the world? I suppose 10 different people might answer that question 10 different ways, but if you dig deep enough, there is surprising consistency among families: because we’re going to die. The second answer to why is closely related to the first: because I don’t think I can do this for another 30 or 40 years.

If you’re reading this blog, I figure you already have your answer to why, and now you just need to do it, or get ready to do it. We love our kids. We love them so much we want them to grow up and live their lives, the same way we did. Even birds kick the adolescents out of the nest.

Emancipation into adulthood is for even the most challenged of our kids. Jason and Joshua are very different people, and they have very different adulthoods. Despite years of treatment and education, Joshua remains minimally verbal, and cannot read. He has significant adaptive living impairments. Josh lives in a beautiful home on three acres not far from our home, supported by a caring staff who continue to teach Josh new skills every day. And because Josh is happy in his adult life, he continues to learn.

Jason is at the other end of the spectrum. Jason lives independently in an apartment in Bath. He drives a car, has a job as a baker in an upscale retirement community, and volunteers with kids. Jason is far from an eloquent speaker, but he communicates effectively; ongoing speech therapy is one of his favorite pastimes. Jason is happy in his adult life, and he continues to learn.

Autism has been branded by the puzzle ribbon. According to the Autism Society of America, “the puzzle pattern reflects the mystery and complexity of the autism spectrum. The different colors and shapes represent the diversity of the people and families living with the condition. The brightness of the ribbon signals hope — hope that through increased awareness of autism, and through early intervention and appropriate treatments, people with autism will lead fuller, more complete lives.”[2]

OK, that’s fine. The puzzle ribbon is a trademarked symbol around which fundraising merchandise can be sold; lapel pins and magnetic car stickers allow us to recognize one another, if meltdowns and odd behaviors in proximity don’t otherwise give it away. Goodness, I was even given a Scentsy pot with the autism ribbon on it to help freshen my home. Frankly, I’m just a little sick of it.

More to the point, when it comes to figuring out all the parts and pieces of our loved ones’ lives as adults with autism, the puzzle ribbon no longer cuts it. No matter how neatly the puzzle pieces fit together, they still yield no composite picture whatsoever. So for adulthood, I propose a new icon: a solved Rubik’s cube. [3]

In  this classic 3D puzzle game from the 80s, the cube’s six faces when the puzzle is solved are white, red, blue, orange, green and yellow. To me, each face represents a domain we have to figure out block by block for an adult with autism: housing; employment; income; community inclusion; safety; leisure. Maybe we need more than one cube, to add financial management, health, lifelong learning, sexuality, marriage, and whatever else contributes to a rich and full life.

People with autism grow up. They need lives. Frankly I think if more parents of non-disabled kids undertook intentional planning and support we’re exploring together, their adolescents would make the transition to adulthood more successfully.

Okay, so let’s assume we have consensus on why we’re intentionally working on our kids’ transition to adulthood. That brings us back to what. What do you have in mind?

Resist the temptation to self-censor. Many people start with “but there’s no money for that, no housing for that, no providers for that service,” etc. At this early point it’s like designing your dream house. Throw the catalog at it. Always wanted granite counter tops? Put it on the list. Need three bathrooms? Put it on the list. When it comes to how to make your plan a reality, you may have to prioritize—but at least we’ll know what to prioritize. Right now you can dream.

–But be reasonable with your dreams, based upon the trajectory of your child’s skills and needs. Josh has a lot of impairments, as well as a seizure disorder. We knew Josh’s adulthood would require supported living, so that’s the framework we worked within. Jason, on the other hand, has always been able to acquire increasingly complex skills, in the context of many deficits common to autism such as in social skills and communication.

Steve and I decided we want to stay in the Bath area, and we want to continue to be a part of the boys’ lives as adults; so their adult homes need to be close by. The Bath region, as I’ve said, is beautiful, with a low crime rate. It’s also where the kids grew up, so there is comfort in the familiar for them. Other families make other choices. Perhaps you have extended family in another state you’d like you and your adult child to be close to. Maybe you’ve had enough snow, and you and the person for whom you will remain guardian are determined to leave it all behind for a warmer climate. Think about everyone’s needs and wants, including your own. You’re planning for the second half of your life, too.

Yes, the second half of your life. Life span and life expectancy are two different things. Life expectancy is calculated taking a lot of people into consideration, including those who die at birth or perish in combat, along with those who age without tragedy. Life span, on the other hand, is of a more personal nature. When we make changes to improve our health and safety, we do so to improve the potential of our lifespan.

“Consider these statistics:

• 100 year old people are the world’s fastest growing group with an expected increase of 746 percent between now and 2040.
• The May 2013 cover article of National Geographic focuses on the probability that some of today’s children will live to be 120 years old.
• The British Medical Journal recently reported they expect 50 percent of the babies born since 2000 to live into their triple digits.

There have even been some experts who have said that we have the potential to live to 150 with quality years.” [4]

No one is impressed by a martyr who throws himself on the fire when a fire extinguisher is at hand. Services and supports are there or can be developed for even the more vulnerable adults among us. There is no shame in accepting a hand up. Consider your needs and wants throughout this process.

We’ll continue with this next time!

[1]  Chapter 6 of Lewis Carroll‘s Alice in Wonderland

[2] http://www.autism-society.org/about-the-autism-society/history/autism-awareness-ribbon/

[3] The term Rubik’s cube and the images of the cube are trademarked by Rubik’s Brands Ltd.

[4] http://www.plaskerfamilychiropractic.com/hylnet/clientapp/docblog.php?blog=1960