Tuesday, October 11, 2011

Looking Down the Road

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 mid-high functioning.

High-functioning in the ways he has spoken language, 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 lielong support sytem 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 now, it is our job as the parents of young autistic choldren 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 support programs. 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.

And where will they go? Where will they go?

Varda writes about "birth, death and all the messy stuff in the middle" on her blog "The Squashed Bologna: a slice of life in the sandwich generation"  She also tweets as @Squashedmom. Varda is proud to be a Hopeful Parent.

p.s. Sorry my post is late. My usual day is the 10th, but my 89 y.o. mother fell and ended up in the ER yesterday morning, with what turned out to be a fractured rib, and I finally got home at 5 AM today.


  1. This captures everything I have been stuck thinking about lately. My son's label is high-functioning, but I'm not so sure he's all that more prepared than your "mid" son. What will we do? I start to feel kind of hysterical thinking about it, as well as a bit trapped, in that I'll never be that retiree one day that gets to see the world, because I can't leave my adult son home alone. And I'll be terrified the day I get sick. And my poor daughter has no clue what kind of responsibility lies ahead of her one day. I wish I had religion to turn to. But I don't. Can't flip that switch. What will we do?

  2. I think next time someone asks what's keeping me awake at night I'll tell them to read this post. So sorry, Maya that you're in my boat, too. Ethan is already asking about what his responsibilities are going to entail in taking care of his brother. I try to un-burden him, but he's right, its going to fall on his shoulders some day.

  3. It is a huge concern for all of us (my 12 year old son is more severe and will always need care 24/7). His 15 year old sibling is aware that he will be responsible in some way, HOWEVER, we have made it very clear to our 15 year old, that he will have no financial responsibility (yes, we are fortunate that we can provide for our future adult with asd). We have also made it clear to our 15 year old that he is not expected to house his brother and care for him. We will set in place a small group home...... well that is the plan!!!
    Good on you for writing about this topic Varda, it is one we all have to think about!

  4. this has been on our minds here as well. here is one post on it http://www.blogger.com/blogger.g?blogID=1673200091498770523#editor/target=post;postID=7488053554995504715 . it's so hard to wrap my head around not being there for him

  5. Moe is four. It is so hard to wrap your mind around finding the right kindergarten placement while also thinking about possible placements for him as an adult. And yet, we have to. It is scary to think about my boy so lost in the world, and the responsibility his sister may have to bear (even if she does so willingly). I cannot think of him as an adult without me. I must live forever, and yet I know I cannot.