Sunday, July 19, 2009

Learning about Autism

So, what has Grandma learned about autism anyhow? Where do I start? I have already written a little about issues related to behavior and will no doubt write more on that topic in the future, but for now let's just say that at first I thought it was all about behavior and now, some 30 years later, I am quite sure that behavior is simply the visible sign that something is amiss with the way these kids fit into the world around them.

It's not as simple as that. Sorry, but absolutely nothing connected to autism is simple. There is no simple cause, no simple cure, no simple definition, no simple anything. There is also virtually no agreement on anything, with one possible exception. I think it is possible we have come to agreement (and I say this tentatively because I already feel the possible onslaught of those who will disagree with me - that's just the way it is) that early intervention can and does make a difference.

Parents are no longer advised to put their young, newly-diagnosed child into an institution. Hopefully, they are also not advised to "accept him as he is, and don't expect too much." Maybe I could also dare to hope that parents are no longer blamed for their child's condition. I came into this field in the days when "refrigerator mothers" were actually told they had somehow failed to bond with their child, failed to love him/her enough, so that in addition to all the disruption they had already endured in their lives, they could now add a heavy dose of self-blame - the chaos they were experiencing in their family was somehow their own fault! In the dark days of Bruno Bettleheim, what was recommended next was that the child be removed from the parents, so that no further damage would be done.

We might agree now that kids with autism can be helped, but as soon as we say that the "fight" is on. Some will suggest dietary changes, others prefer medication; some want 40 or more hours of home therapy, others want early childhood programs that promote inclusion and sociability. Some say focus on sensory integration, some want speech therapy, some want behavioral programming, some recommend play therapy. What are loving, concerned parents to do? How do they choose? What if they invest far too much time, energy and money in a program and nothing changes? What about the guilt then? Is it back to being their fault for choosing wrong? And what about the rest of the family? If both parents need to work to meet expenses, how can they possibly devote all the needed time to the interventions that might help their child?

As professionals, do we set parents up for almost certain failure when we suggest that with the proper intervention, their child has a good chance for a relatively successful life? What does that mean, anyhow? Will they be able to live independently? Drive? Get a job? Marry? If not, how will they be cared for in the long term? How much of an investment is needed in the early years for the best possible chance of a positive outcome somewhere in the future?

Retreating now to my very personal views on this, I think having a positive outlook for the future is the single most important thing any of us can do when dealing with a young child who has autism. Beyond that, each family can only do what is comfortable for them. Difficult choices will have to be made, and it probably is wise to accept from the very beginning that they will have to advocate for what is best for that child every step of the way.

Some of the positives:
---- Better understanding of autism among most professionals;
---- Earlier and more accurate diagnosis;
---- General acceptance that early intervention DOES make a difference;
---- A wider array of possible interventions available;
---- (Generally) more appropriate school programs available;
---- Some of these services are funded; it doesn't all have to come out of the parents' pockets;
---- Many, many more ways to find support. Local groups, Internet resources and listservs. When I first became interested, there was nothing for the parents.

I will resist the temptation to make a similar list of negatives, and instead state that what I saw happening in the public schools as I came closer to retirement could best be described as a train wreck: We had learned much; we were starting to "get it" and could maybe begin to develop programs that would meet the needs of the increasing numbers of kids with autism who were entering our schools. But at the same time, budgets were being cut everywhere. Parents who were strong advocates still had a lot of power and the laws were on their side. They could, and did, fight for the programs their kids needed and deserved. But the ones who were aware of what was happening soon came to see that if they demanded a Cadillac program for their child with special needs, something else had to give. Programming for their other children, or the kids down the block, would begin to suffer. There was simply not enough money available in most school districts to do what we knew needed to be done. In most districts around here, the collision has already happened, and it's the kids who have suffered. It's hard for me to talk about quality programming in the schools - for kids with or without disabilities - without mentioning that it just isn't going to happen unless drastic changes take place in the way we fund public education.

Thus it really falls back on the family to seek out and implement whatever interventions seem most likely to help their child with his/her unique needs. The good news that these kids can be helped should go a long way to offset the stress that comes with trying to sort out the vast amount of information that is now out there. I recommend following your instincts and choosing a path that fits with the family structure that already exists. Try something that "feels right" and discard anything that doesn't. But never, ever give up on your child. They need you to believe in their potential!


  1. I enjoy your blog, Grandma Char. Glad you're here!

  2. And I am absolutely thrilled to know you are reading it!