When I bacame an Autism Parent (because, let's face it, that's what happens when your beloved off spring is diagnosed) I chose not to be secretive about the whole affair. As hard as it was to get my head and heart around this new reality, once I was able to regain some semblance of emotional stability I decided that we had some social obligation to help other people understand autism a little better. So I told family and friends. I told acquaintences who often saw Ellie and strangers who tried to engage her when we were out and about. I answered questions and I did my best not to be defensive or thin-skinned about the whole thing.
And as word got out, supportive people began sending me inspirational stories, emails, and videos about autistic kids and adults. There was the artistic teen in Florida, the Autistic Prom King, the Basketball Star and many more, and they are wonderful, amazing stories of success. At first, I saw them as beacons of hope that my own children could follow: there was no limit to their potential. This was a really good thing in some ways, because once you get a diagnosis no one can tell you what to expect. No matter who I asked, no one could tell me if Ellie would ever be verbal, what her limitations might be, whether or not she'd be able to go to college, get a job, become independant. They could tell me that they thought that she was smart, and they thought she had a good chance of catching up in some ways, but no more than that. So at first these stories really did inspire me not to lose hope: to see that there was great potential for happiness and independance in her future.
But since those early days I have begun to see a down side to all this cheer. Because while these kids' stories are amazing, they paint a picture too rosie to reflect reality for many families. And that's dangerous, because as cities and states and the federal government are all looking for places to cut their budgets and tighten their belts, we can't afford to have that picture shape the conversation about services for special needs. Already families in most states do not have access to the funds necessary to provide essential services to autistic children and their families and if law-makers and Joe Public believe that autism isn't that big a deal because of the basketball-playing wonder boy they saw on YouTube, many more children and families are going to suffer.
Because autism treatment isn't a luxury, it's a necessity, and yet the cost of paying for it out-of-pocket is prohibitive for all but the wealthy. The rest of us who planned as best we could for our children's futures but couldn't have predicted that those plans would include ABA therapies, speech therapies, Occupational therapies, Social Skills therapy and so on are left at the whims of state-funded programs. And the funding there is already pitiful and erratic. Funds very from city to city, town to town, state to state. Many states do not require insurence companies to cover even basic autism therapies such as ABA. Often people are forced to move to other states to get necessary services, take out exorbitant, crushing personal loans, mortgage the rest of their lives in order to, as one mom I know said, "ransom" their children. Because the alternative is to leave the fate of their child to chance in the hope that they'll somehow make it in a system that too-often sees special needs children as disposable. (And before some of my good conservative friends start emailing me about "private charities" I should mention that I have yet to find any charitable autism therapy organizations, outside of a couple in the UK and Canada and New Zealand.)
When Ellie was diagnosed, our area agency had resorted to trying to train parents to be therapists because there wasn't enough money to provide the ABA necessary to the 2 and 3 year olds being diagnosed with autism. In spite of the fact that trained, professional therapists typically don't treat their own children because the whole parent-thing gets in the way, the agency could see no alternative because their funds had been cut so severely that they could no-longer afford to hire ABA therapists to provide the intensive therapy necessary to help. What happened to families with two working parents who couldn't attend the daily classes? What happened to children whose parents were too overwhelmed, too busy, or couldn't get the hang of therapy? I don't know. I do know we moved heaven and earth to get there, calling in the whole extended family so that I could get in with Ellie every day because it wasn't much, but it was all there was. And I know that even for me, with all the support of my family and a great desire to do whatever it took, therapy with me was less effective than with a professional. It couldn't help but be. Moreover, I know that I was lucky because Ellie's symptoms were so much milder than those of many of her "classmates."
And now? Even that paltry funding that provided basic training for parents is in danger. And the lives of other little Ellies being diagnosed today, and the lives of children whose challenges are much more profound than Ellie's, hang in the balance. With good early supports and services, and intensive speech and behavioral therapies many more of them could become functioning, productive adults. But without them, many more will be dependant on others forever.
So the next time you see an inspirational autism video or read an amazing article about someone with autism who overcame great odds and found success and happiness in life, by all means cheer for them, because it is wonderful and amazing. But remember that there are thousands of others, invisbile in these stories, just trying to learn to speak, to use a toilet, to make eye-contact, or to overcome myriad challenges enough to do the things most children do naturally. And they and their families need all the help they can get if they're to have any hope for a brighter future.
You, my dearest daughter, have received your calling. You MUST seek to publish what you are writing here somewhere it will be read by a broader audience that we who regularly read your blog. Your eloquence is no accident.... it is a gift. All you have done to this present day has been to prepare you to be the voice you have been chosen to be. Just do it and let the God of us all use it well. Love, Dad
Posted by: Dad | April 14, 2011 at 10:24 AM