I recently came across this survey taken by one of my favorite sites for autism information, Natural Learning Concepts.
Over 5,000 people have been asked this question. The results of the poll are:
WHEN MY CHILD IS AN ADULT, HE/SHE WILL:
|1. Live independently||8 Percent|
|2. Live independently but require minimal support||42 Percent|
|3. Live in a group home||14 Percent|
|4. My child will probably never leave home||36 Percent|
These results intrigue me, and make me wonder two things. First of all, how old are the children of the parents surveyed? I know that my answer would vary depending on the age Nigel had been at the time I was asked. Between the ages of three and seven, I would have chosen #4, My child will probably never leave home. Between the ages of eight and thirteen, I would have chosen #3, Live in a group home. But now, as he nears fourteen, I might possibly choose #2, Live independently but require minimal support. Or, it might be #4 until his late twenties-mid thirties, and then #2. And then, as I look back at how far he’s come and dare to dream about how far he might be able to go, I wonder if the possibility exists that in a few years I could actually answer #1, Live independently. As the years have gone by, his functioning has gone from fairly low to moderate to fairly high. What if he continues to improve? What is his true potential?
And this brings me to my second question: At what point do we say that someone is high functioning? The definition is rather subjective. I have acquaintances who’ve said to me, “How wonderful that Nigel’s so high functioning!” But I think, if he were so high functioning, wouldn’t he be able to be mainstreamed? Wouldn’t he be able to make it through a typical school day? At this point, he talks HFA (high functioning autistic). His sensory issues, so severe in the past, are now at a manageable level. So how do we quantify our child’s level of functioning? Where is the high functioning threshold anyway? At what point do we know that our children have crossed it? And what does that mean for them and their future? Trying to make their way in this world that could easily take advantage of them? What does it mean for us, their parents?
Of course, if Nigel were still non-verbal or still had severe sensory issues, I would not be asking these questions. I would choose answer #3 or #4, as I would have when he was younger. I would still think about his future, of course, and mine. I would obsess about finding a good facility for him. I know that it would not be easier, because I had been in those shoes for several years. But it would be different. My concerns about my son’s future are different now than they were before he began reaching for the high functioning threshold, but no less worrisome, no less consuming.
And so, regardless of our children’s age, regardless of their functioning level, we all face the question posed by Natural Learning Concepts regarding our children’s future. We all wonder and worry. Some parents’ worries evolve and change, and some are unique to their own circumstances. But we all face the prospect of how autism will affect our children’s futures. We all have our own suitcases to carry. And whether we cross that threshold or whether we’re at the opposite end of the spectrum or somewhere in between, we still face this challenge. And that is no small feat.