When I made the decision just a few short weeks ago to start writing this blog, it was partly because I felt isolated. We do not have an active support group for parents of autistic children in this county, or any active support group for special needs parents of any kind for that matter. I knew that there were other parents of autistic and Asperger’s children in the school system, but – because of student privacy issues – also knew that I cannot contact these parents out of the blue to ask them to to join a support group. So, with the exception of one other set of parents that I knew, whose ASD child is several years older than my own, I felt rather singular.
With the WordPress.com address in hand, I set out to make connections that I didn’t believe I could find here. And, boy, did I find connections. Suddenly, I am corresponding with people from Australia, Columbia, England, Vietnam, South Africa, and more. I have met parents of grown children who have been where I am now. Parents who amaze me with the ability to juggle two, three, four, or more ASD kids within just one household. And parents who are right where I am now – just beginning, with way more questions than answers.
So, I find it somewhat ironic that, in my effort to explore the blogosphere and world for people like me, I ended up coming across one right here in my small town. Earlier this week, while sitting in a waiting room, a woman whom I was chatting with noticed my new necklace pendant. My father gave me a silver puzzle piece pendant for Christmas. When I began to talk a little bit about my son, she told me she had suspected so because of the puzzle symbol. And as soon as I began to share with her that I write a blog about it and have found this wonderful community of people like us out there, she began thanking God – talking about how alone she had been feeling all this time. I gave her my blog address and asked her to please contact me on it and that, maybe, we could find a few other local people to start a support group.
She began to tell me about her child, her struggles to get anyone to take her seriously, and how, because of lack of understanding in her family, she has been keeping the diagnosis a secret. Here she is, in the very same small town, feeling isolated because of a lack of understanding and a lack of parent support and community education about ASD. This tells me that, despite the wonderful progress being made, we simply haven’t come anywhere near far enough. For, if 1 out 0f 91 children had a particular disease, you could bet there would be a lot more governmental and public attention – as well as enormous community support for its victims. But take a developmental disorder that makes some people feel uncomfortable – or inexplicably embarrassed – and you end up with all these little families like islands unto themselves. My heart broke for her and for her obvious desperation and fear.
I’ve been catching a little local displeasure this week. And, let me be the first to say that I am new at this. Putting myself and my children out there for the world to see has been a new experience to say the least. Perhaps I didn’t do it so well. Perhaps I should have used an alias. Regardless, I’ve made the bed, and it’s a little late to undo it. I have been questioned as to whether or not it was the right thing to do to share my children’s lives. I have upset people who feel that I have hinted connections to them to via this blog. For that, I’m sorry. When I began this blog, I thought that I might get 100-200 people who might follow it and be a source of shared experiences for me. I certainly didn’t expect to go viral. I didn’t plan for anyone local to recognize clues to any real people as I didn’t really think anyone local would be taking note of an obscure parent autism blog to begin with. Obviously, I am going to have to work on making some actual experiences a little more hypothetical and not alienating real people, for that is certainly not my intention. Lesson learned.
But I have learned something else that I wish I hadn’t. People clearly do not want to talk about or be associated with autism. For, if a child were stricken with a life-limiting disease, there would be dozens of Facebook fan pages popping up. There would be fundraisers and a local biker group doing a benefit ride and charity concerts. And – no one- and I mean NO ONE would be the least bit upset to be connected to it in any way possible, would they?
No, autism is not a disease. It is not contagious. It is not even a tragedy in its higher functioning forms. But, in its severe forms, it darn sure can be life-limiting. It can rob our children of communication. Their parents might not ever, ever, hear the words “I love you” from their children. It can rob our children of friendships, because some cannot connect to others. It can rob them of an education, because they might not be able to learn the way they need to. It can rob them of affection, because they might not be able to withstand the physical discomfort of their own mother’s touch. It can rob them of dignity, because they might not be able to be toilet trained or be self-sufficient in adulthood.
If that isn’t life-limiting, I don’t know what is.
I’m angry right now for every mother and father I’ve heard from who are facing the challenge of autism alone. I’m angry at their families, who persist in convincing them they have something to be ashamed about. I’m angry at school districts around this country who are ignoring the fact that so very many children in its classrooms are affected by a condition that needs specific, research-based interventions to help them reach their potential. There are districts around this country without a single expert in autism even advising them, let alone teaching and providing therapy to their students. I’m not getting political and making a plea for more money. I’m suggesting we take a good look at the money we are already spending.
And I’m angry for this one loving mother, feeling alone and powerless in a family and world that sends messages to her to keep silent and, thereby, ashamed. I’m angry that she has to listen to child care providers who suggested, through their ignorance, that autism is synonymous with mental retardation. I’m angry that the only person she feels she can connect to is a complete stranger in a waiting room. People, I think we can do better than that.
So, I may not be doing this right. I may be stupid in my belief that transparency is the way to de-stigmatize ASD. I may have made a mistake putting our lives out on display. But I can’t help but believe that the more people who are out there telling the world about their children and shouting the need for autism awareness and support will one day mean there will be fewer families enduring this alone. And fewer children trying to stumble their way alone through a world that, with just a little more awareness and a deliberate approach to educating autistic children, could help them to realize the futures and dreams that all people share for their children and for themselves.
When are we, our families, our communities, our school systems, and our country going to stand up and admit that the Emperor is not wearing any clothes?