March 2008


I’m a normal person. In special-needs speak, I am NT, which means “neurologically typical.”  It means that I am like the majority of the population, a person whose brain works in the traditional manner.  I am married, however, to someone who is ASD. More special-needs jargon. That means “autism spectrum disorder.”  In years past, autism was pretty much relegated to the type of person that Dustin Hoffman portrayed in the movie Rainman.  I have to admit that my only exposure to autism prior to adulthood was a child who was the son of my father’s employee.  I remember he had the odd distinction of eating loaf after loaf of bread by taking one bite out of the center of each piece and throwing the rest away. Nowadays, it is known that autism covers a wider area, and there is a greater umbrella over the people who can be classified as autistic.

My husband is an “aspie.” He has never been formally diagnosed, but in the path to discovery of my son’s issues, Jim found answers to many of the mysteries of his own life.  When researching autism for our son, Jim saw himself and gained clarity.  It was emotional, but something that liberated him, and quite frankly shored up our marriage as I was better able to understand the intricacies of my husband’s behavior–some of which were, quite frankly, driving me crazy!

My son, Raphael (whom we call Raif–which is pronounced like the name “Ray” with an f at the end), is a full-blown, low-functioning, severely autistic individual.  He is 11 and on the mental level of a 3 year old.  Speech-wise, he probably comes in around 2 years old.  He didn’t potty-train until he was 8.  He speaks very little, and it’s rarely social, mostly just to communicate his wants and needs.  He will express concern and empathy, but that’s a relatively new thing for him.  He is content to spend hours doing one thing or another, and if his needs were met in some other fashion, he might go days without human contact and never notice.  Autism for him is not a mere hinderance, it is a debilitating thing that controls his life.

There has been a lot of talk in recent years about people embracing their autism.  Temple Grandin, a renowned animal behavioralist and autistic herself, makes it clear that she feels that autism has its place in the world.  High-functioning autism, that is.  The Aspies of the world are generally the engineers, the scientists, the computer programmers.  While those people struggle, they are still able to function.  Many of those people don’t like the label of “disabled” because they don’t feel they are.  In fact, like my husband, many of these people never realized anything was “wrong” with them until recent years when awareness of ASD grew.  There is the idea that trying to fix something that appears broken is not necessarily the right thing to do, because maybe it’s working fine afterall.  Grandin acknowledges, however, that all autism is not good.  Research must be done, and a cure found for the severe cases.  However, there needs to be a line drawn and a distinction made as to what constitute disabled, and what is merely being different.

I sometimes feel trapped in this world of autism.  I live with it day to day.  I can see the points of view of both sides.  I love my husband, and know deep down that much of his mathematical and computer brilliance comes from the way his brain is hard-wired.  I’m not so sure he’d be quite where he was if he didn’t have Asperger’s.  On the other hand, I also see him struggle with social situations and other aspect of daily life that I take for granted.  Would he trade one for the other?  That’s a tough call, but it’s one that he would have the luxury of making since either way would not greatly impair him.

Yet with my son, I would readily erradicate autism in a heartbeat.  To have a conversation with him, to have him function, to see him doing what other 11 year olds his age are doing would be far worth it. I know that without it he would be a bright, loving child. I am sure if I gave him a choice, if he could understand, he would choose that path too. Freedom from autism.

Either way, I am resigned to the fact that autism is a part of our life and will remain so.   I have accepted that learning to live with autism is what we must do. Acceptance doesn’t equate giving up, as some would argue.  It means that you commit yourself to doing the best with what you have.  It’s not always easy.  Heck, most of the time it’s not easy.  But sometimes it’s all you can do.

So where does that leave me?  With my husband, I embrace autism.  With my son, I detest it and strive to defeat it. There are no easy answers, and I have to wonder if the world was so much better off widening the umbrella.  Has it taken attention away from the severe cases who need to be the focus, and instead placed that light on those who don’t need it or want it?  I don’t know.  Either way, I’m stuck in the middle, which is never really a good place to be.

Having a special needs child can make life challenging. Having a large family can be challenging. Put them together, and you have a unique family make-up which can be particularly challenging. However, it can also be wonderful. This blog is a peek into the lives of large families who also have one or more special needs children. It is a blog where the parents share their thoughts, hopes, joys, and sorrows. While there are moments where things will not be all roses, it is meant to be a positive blog. It is here to celebrate the lives of those families who have made the decision to follow this particular path, with all of it’s rocky spots and wonderful gardens. We hope you will share in this journey with us.