Thursday, April 12, 2012

Looking Down the Road

Note: In Honor of Autism Awareness/Acceptance Month I am bringing some of my posts from the group Hopeful Parents site (where I post monthly on the 10th) back home to my blog. This post originally appeared there.

A few things in my life have been tapping me on the shoulder lately, asking me to please pay attention to the long view; looking down the road toward what my son Jacob may need in about a dozen years when he will ostensibly be an adult, or something like one.

We can’t know what life has in store for us, what twists and turns may lie ahead, with anything near certainty, but with each passing year that my son Jacob remains clearly on the autism spectrum, the prospect of him moving into "the mainstream" fades further and further from my radar.

And it hurts. It hurts my head and my heart to stand in the middle of the path Jake is currently on and calculate, clear-eyed, his trajectory, seeing it landing him square in the realm of needing some sort of minding or looking after... for the rest of his life.

Now, my son Jake is in a funny category. I don't love the labels, the ranking and quantifying. Because it leads to a certain reductivism, a tendency to see the traits, the diagnoses, and not the whole person - my wonderful son - who is so much more than the sum of his parts. But sometimes it helps when talking about these things to say: my son is considered "mid-high functioning."

"High-functioning" in the ways he has spoken language, reads, constantly attempts to communicate, actively engages with others and has a tremendous amount of social desire.

"Look, Mommy," he'll say, “I’m petting the kitty!” wanting to share his world with me.

But still, he is "mid-functioning" in how much of his language is still often scripted and repetitive, in how much of what he is hearing he is not comprehending; his language processing deficit rearing its ugly head time & time again.

And while he understands much about his immediate, concrete world, as soon as abstractions are introduced he is quickly lost. Language based as they all are.

Ask him a why question and you get a tautology:

"Why are you crying Jake?"

"Because I am sad."

"Why are you sad Jake?"

"Because I'm crying."

But the biggest concern of all is how little he understands of how the world works, and thus how undeveloped his ability to safely navigate in it.

Jake’s twin, at 9, doesn't always exhibit complete safety awareness when crossing a busy city street, but he's working on it. And he knows the elements involved, can rattle off what he should be doing -- waiting for the walk signal, looking both ways, watching out for turning cars, etc. etc.

Jake on the other hand, still seems to not know the difference between the sidewalk and the road, has no awareness as to there being a threshold crossed from one to the other. I must have pointed out the red stop hand and the white walking man of the crosswalk signs a hundred, a thousand, a hundred thousand times, and still he cannot for the life of him remember what they are supposed to communicate, why they should matter to him.

I could give a hundred other examples, but let's just say that while I expect Jake to grow and change, develop significantly, and blossom forth, unless there is a whole order of transformation about him - let's say future nanobots that can hook up the disconnected neural pathways or whatnot - we're looking at some sort of lifelong support system for him.

And this is where I quake in my boots.

Because the infrastructure to support that, for the MASS of kids who are going to need it, from the autism explosion that has manifested in Jake's generation?

Is simply. not. there.

I have a friend whose brother is autistic and in her charge, as her parents are both now gone. Her brother is living in a wonderful place, a small group home run by a dedicated staff. It is stable and intimate, and they function like a family. The residents venture out daily to jobs or day programs; there are outings: nature hikes, bicycle rides, movie nights, ice cream runs.


But not wonderful.

Because my friend's brother had to wait 10 years on a waiting list to get in. And he's 42. Of the 5 in 10,000 generation.

There are a few handfuls of wonderful, appropriate settings for mid-functioning autistic adults; allowing them to live in supportive communities, nearly, but not fully independently. And, most importantly, where the residents have significant SAY in how things are run and their lives are ordered.

And now, it is our job as the parents of young autistic children to see that those grow a hundredfold, a thousand-fold, so they will be there for our kids who will likely need them.

And if you help to build a network of terrific group homes and your child ends up being one of the lucky ones, able to function fully independently in the world without support? You have done a wonderful thing for your community.

And if you don't act NOW? Your child may end up homeless on the street, in jail, or worse. Because while you think they can live with you forever... are you really going to live forever?

So yes, this started as a personal meditation on my son's future and ended with a call to arms.

Because in about ten year's time a whole generation of autistic adults is going to be aging out of their educational programs and therapeutic services. Many of them will be bright and personable enough to get jobs, but perhaps not be able to manage finances, or keep up with the many maintenance tasks of daily life without some degree of support.

And where will they go? Where will they go?


  1. I have to admit that this is not something I have thought as much on as I clearly should be. Thank you for this post, for this clarion reminder to all of us that there is a future that our children need us to prepare for and not just in ways that consider the needs of our own children but many many children like them as well.

  2. You are spot on and it is very scary. My son is nearly 13. He is non verbal; and more challenged than your son, BUT they have the same issues! We don't have anything like group homes in the country that I live... in fact there is very little put in place for adults on the spectrum. It is a big worry!

  3. I am trying not to think about it, Varda. It's terrifying. My son has the same challenges. The example about the stop/walk signs - yes, exactly. But the best I can do for him is what I'm doing right now.

  4. Well spoken. I'm lucky. Both my kids are on the spectrum, but they are high functioning. There's no question that they will be able to live independently. But. My daughter (and next year my son) attends a school for kids with autism and ADHD. She has friends who won't be independent. Not fully. And I love love love the way this school commits to its kids. (Yes, it's private. We live in Montgomery Alabama. I pay no more than I would for a decent preschool. Seriously.) There is a program now to help the kids who graduate transition into an adult life, whatever that means for the individual. I would love to see more programs like it.


I am so sorry to have to turn word verification back on, but the spam-bots have found me - yikes!