All of my years of education and work in the autism spectrum disorder and research communities did not prepare me for dealing with the challenges of having a child with autism. You would have thought that the added experience, connections and knowledge gave our family an advantage, but it didn’t.
When I started noticing things like delays in communication, meltdowns, staring spells and obsessive concerns in my daughter Sarah, doctors and family members initially told me that I was making too much of these behaviors. More specifically, they said that I “knew too much” to be objective.
When Sarah was three and a half, after she had started having violent outbursts that hurt her sister and herself, I decided enough was enough and I took her for an evaluation. The diagnosis was autism spectrum disorder. The year before, her diagnosis would have been Asperger syndrome because she is so bright.
Personally, I am focused more on fighting for educational supports for my child than I am on finding out what caused her autism spectrum disorder. But while scientists know more than ever about the causes of autism, it’s still not enough. When I see kids like Sarah and people with more significant needs, I understand how complicated autism spectrum disorder is. Seeing this complexity makes it clear that some questions can only be solved with a lot of participants in studies.
In particular, autism spectrum disorder in females needs to be studied. Because not as many girls have been involved in autism research, researchers and clinicians know less about girls with autism spectrum disorder. It’s important to gather as much information as possible in order to build a better understanding of autism in females.
While parents of teenagers and adults are facing their own issues and may not be able to appreciate how important contributing to research is, I feel very strongly that it is crucial for all members of the family, when possible, to participate in research studies. Join as many as you can. Don’t worry about how many studies you’re in. Do all of them. Some require more time than others; some involve a research team that works with you personally; others do not. Without the studies and the research that was performed 10 years ago, the future for children born recently, like Sarah, would be much different. And science has a long way to go to really provide help for those who are going to be born in the next 10 years.
Today, Sarah is a funny, very smart and generally happy kindergartener with some unusual behaviors and significant obstacles and needs. With the right interventions and supports, I know some of her behaviors will improve and we will continue to see her live the best life possible. These possibilities exist because of research. They exist because families took precious time out of their routines and their lives to give of themselves so that others could be helped.
We joined SPARK not because of what it could do for us in the short term but for what it could mean in the years to come and for families in the future. My generation has benefited from the contributions of the last one, and we hope to be a part of a movement to help scientists support future generations.