As most of you know it has been a year ago April that our oldest child was diagnosed with an autism spectrum disorder. For some reason that day changed everything, and yet it changed nothing. It has taken me pretty much the entire year to come to terms with something that I have no need to come to terms with--it is what it is, so why was it so hard to hear the word "autistic". The hardest reaction for me when I shared what was going on in our lives was people saying "he doesn't seem autistic", or "he is just fine" well what does that mean? Yes, my child is fine, heck he is more than fine--he is amazing. I am blessed to have a wonderfully healthy child who happens to see things and process differently than most people but because we live in a society where people are fairly inflexible and rigid it is/was a scary diagnosis. When you learn that people with Autism have a high depression rate or suicide rate, it can down right freak a parent out--but you also learn that this happens because most often they get tired of trying to be like others want them to be and are not just accepted for how they are. So this is my challenge, for Davis to be the best that he can be and to be his advocate for him to be nurtured and encouraged to be his best, not someones idea of best. It has been a bumpy year learning what works, but worth every bump for sure.
I have spent the past year reading and researching everything I can about Aspergers, Autism, ADHD/ADD, OCD, Anxiety and more--what this means, what people think about why this happens, and what have I learned. Nothing. Well, maybe nothing is too strong of a word, but not much is appropriate. What I know for sure is that what works for one kid, does not work for another. No wonder we have not made much progress with Autism prevention or treatment, we don't even understand it. This month is Autism awareness month. 1 in 110 kids born are considered "on the spectrum" and 1 in 70 boys born are "on the spectrum".
Below is a link to a PBS Special about Autism. I think it is worth watching.
Below is a copy of one of the best comments posted on-line about the series--I think her comments are a good summary of what I think too. Especially her third point. Letting people function in their own way. Not always easy to do, but it is how it should be.
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Just a few reactions to the first two episodes:
1. The word 'spectrum' was mentioned once only in passing. I think a greater emphasis on this notion of autism being a 'spectrum disorder' can be a very helpful idea for considering the range one sees among those with a diagnosis. I am sure that there are nuances beyond the notion of a single-category spectrum; but the notion of spectrum is quite helpful for understanding the prevalence and various intensities one observes or feels.
2. I am so pleased that there will be an upcoming episode focused on adults with the spectrum disorder. My own sense is that as we raise the profile of autism as a way of life, we seem to be forever caught in the curiosity about issues related to early life, such as onset, diagnosis, initial treatment, etc. And, of course, parents/grandparents of children who display autism characteristics, are very proactive in attempting to have these matters addressed.
However, for the most part, autism is mostly life-long and does not go away when one arrives at age 18 or 21. And increasingly we see people concerned about services. But I would like to see as much attention paid to the lived experience of folks with autism at all of life's stages, as we are currently beginning to do with youngsters. Not just in terms of services -- or the lack thereof -- but also in terms of what it is like to be autistic in the various stages of the adulthood.
3. Finally, in my own exposure to people with autism, I have found that they are often variously gifted. And what can be seen as a disability (often socially), frequently hides amazing capacities in other areas. At least one adult person I know who is diagnosed with Aspergers has expressed to me that she is tired of being treated as if she needs to be 'fixed', so as to meet other people's criteria for normalcy. Once having been made aware of some of the challenges she had faced all her life, she is now very happy with who she is. Notwithstanding the fact that the larger society is still working at being sufficiently accommodating to allow her to function in her own ways.
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