Pardon Me While I Get Philosophical for a Moment

Is Autism a Disease or a State of Being?

This question goes through my mind daily as I watch my son go from functioning well in the world to falling completely apart in minutes, incapable of dealing with the slightest detour from his idea of the way things should be. While I do accept who he is and how he is, I can't help but wonder if he is comfortable in his skin. If a cure could make him a typical kid, would he want to change?

There are adult Aspie's in the world who do not want to be cured. They are self-reliant, successful, and comfortable with who they are. They worked damn hard to get there, too, most likely with the support of parents, extended family, and a school system that wanted to help them achieve their full potential. I applaud them. I believe we are providing that type of environment for Ian. Hopefully, one day he will see his differences as assets, even though now they are challenges, not just for him, but for our entire family.

Today, however, I am ready for a cure. This afternoon Ian freaked when the weather changed. Thunder and lightening scared the b'jesus out of him and he hid in his room. Everything I did or said to help him rationalize the situation just made it worse. So I left him alone. Later, when I returned to his room he was so angry with me, he said he was thinking about killing me. Death by fireball was his plan. Yep - he was going to burn me up by throwing fireballs at me. Then he realized that the fireballs would burn him too, so he decided not to do it. I also mentioned that at the tender age of 7, he has no job or money, doesn't know how to cook, can't operate the washing machine, and can't drive a car. He needs me for these things at the very least, and it would be in his best interest to keep me around a while longer. While I enjoy the intellectual challenge his ideas present, I would prefer if they were not centered on my demise.

On days like today, I see Asperger's as a mental illness, needing treatment through medication and therapy. Few people would argue in favor of children harboring delusions of killing their parents. Although this idea is probably fleeting, still I am troubled that my child would even allow such a thought to enter his mind. This to me is a sign that something is terribly wrong.

Is being autistic similar to having cancer? Yes, it makes life difficult sometimes. It may even be debilitating, preventing many autistics from being able to function socially in a productive way. It paralyzes the family. It emotionally bankrupts everyone who cares for the autistic person on a daily basis, especially when symptoms become worse instead of better. While it is not fatal by definition, the anxiety and depression that accompany it most certainly can be deadly. Is it fair to treat only the symptoms of these co-morbidities rather than look for a cure for the underlying cause? Cancer patients would be furious if society suggested palliative care as the only treatment their disease.

Is autism comparable to Alzheimer's Disease? For ages dementia has been relatively ignored because it was assumed that diminished lucidity was part of growing older. The body of evidence refuting that belief has grown considerably since Baby Boomers have experienced aging not only for themselves, but also as caregivers of their elderly parents. Trends show an increase in the rate of Alzheimer's each year that one lives past 80. In the last decade or so, medicines have been created to slow or stop the progression of Alzheimer's. A cure is unavailable because the cause remains unknown, and it will stay a mystery until more Boomers are afflicted themselves. I speculate it is the same for autism. The numbers of the afflicted and diagnosed have risen so dramatically in recent years, that it is impossible to ignore what is happening.

Perhaps autism is more like having small breasts or crooked teeth. Everyone is different. Some are gifted in certain areas that are highly valued by society (with good looks, charming personalities, and/or perky boobs). Those who are not pleased with their attributes can often change them. So why not have a vaccine (oops, I forgot that's a naughty word in our circles), surgical procedure, or pill that can help autistics fit in socially? Enable them to conform to society's expectations of what is normal. Wouldn't that be easier and less expensive than having to retrain autistics to behave in a way that is inconsistent with the way their wiring causes them to behave?

Or, does our society need to become more accepting of differences? Schools, companies, even governments have jumped on the diversity bandwagon. We go to seminars, meetings, form committees and commissions, write policies and procedures and educate the masses that differences must be tolerated. There are debates and law suits about whether people should be treated the same or receive special benefits because of their differences. But is anyone really buying it? We have put a new label on civil rights and tried to phrase legislation to protect everyone who needs protecting, but do people actually believe in their hearts that being different is o.k.? Ian's elementary school has a strict policy against bullying. Yet, he still feels he needs big friends to protect him from those who see him as a target and seek to humiliate or harm him. Will the cool kid who laughs at my son's quirks or takes advantage of his naivete today really be willing to work side-by-side with him when they are adults? It is difficult to say how things will be 20 years from now, but as a mother I am skeptical. Policies may curb some intolerant behavior, but they don't necessarily change beliefs.

In his book Born on a Blue Day, Daniel Tammet tells how he avoided being bullied. When someone would pick on him, he ignored them because he just was not interested in what they were saying to him. He tended to ignore his peers anyway, just because being social was too difficult. The bullies lost interest in bothering him because they never got a reaction from him. My parents taught me to ignore kids who made fun of me because I was chubby, but it was almost impossible for me to ignore someone who was obviously so wrong to judge me by my body shape. Only once did I fight back physically; the other times it was a war of wits and words - and I always felt vindicated because I could put bullies in their places by identifying their own insecurities and zooming in. I don't think Ian is able to manage his anger in a way that makes him capable of doing this, at least not now. I want him to feel comfortable with and confident in himself so that bullies won't have as much ammunition to use against him. Unfortunately, he knows he is different and he isn't very happy about it.

It takes years, even decades for some people, to develop a self-assured attitude that others can sense. For an Aspie, this takes precious time away from concentrating on the passions that interest him. Feelings, because they are so difficult to deal with and understand, are not worth the effort. It is easier to become an expert at something concrete and not bother with the intricacies that make relating to other people a pleasurable experience. Intuitive observation is something I enjoy. Doing Calculus problems makes my chest hurt and my eyes bulge. Without a mixture of both kinds of experts - and everyone in between - life would be pretty dull.

Even though people all through the autism spectrum have strengths that make them unique, it is still extremely difficult for them to get through a day as we know it. Shouldn't we look for new ways to make life better? I have always believed that you cannot solve a problem until you know its cause. Until then, you only deal with symptoms. If research one day finds the causes of autism, then a true cure may be possible. Trying to cure it now is putting the cart before the horse.

If a cure is one day found, it will be Ian's choice whether or not to try it. Only he will be able to decide if he is willing and able to cope with the dramatic changes that may mean for him. What if he chooses not to be cured? Will there be a stigma associated with wanting to remain different?

After 31 years of needing glasses, with a prescription that worsened each year, I decided to have LASIK. The change was amazing. It was life-altering. There have been no negatives. Being able to see the alarm clock in the morning is the first advantage I experienced. Knowing I could confidently ascend the enormous flight of stairs to my children's bedrooms quickly and safely in the middle of the night has given me peace of mind. Having the confidence to drive after dark for the first time in 2 decades has meant security. A "simple" 10 minute outpatient procedure has improved my life in uncountable ways. Yet, I agonized over the decision to try it for fear that it wouldn't work or worse, that I would go blind if something went wrong. Now that I have 20/20 vision, I encourage others to try it. I often joke with my parents about their fears of the procedure. They get along fine with their glasses and are in no hurry to change what they have grown comfortable with. Will there come a time when society persecutes those who accept their own imperfections?

History has proven that the human race is very judgmental when it comes to differences. I can understand why many in the autism community are afraid that finding a cure for autism will mean persecution of those who choose not to be cured. They claim that babies will be aborted if parents learn their unborn child is afflicted. That may be true. People have aborted fetuses with Down's Syndrome. Many have not. Others have aborted daughters when they wanted sons. Most do not. The Slippery Slope argument is a desperate attempt to frighten people from examining the truth: not everyone wants to remain autistic for the duration of their lives.

Am I selfish for wanting my son to be happy and well-adjusted and functional? Perhaps. If I had known what we were facing when I was pregnant, I do not believe I would have terminated it. I wanted to be a parent, no matter what. I was in love with Ian the day he was conceived and have been more so every day since. If curing his autism will give him the life he wants, whatever that is, I would offer him that option in a heartbeat. But the choice will have to be his.

The picture at the top of this post is a watercolor painting, "The Autism Puzzle", painted by Carla Graham.