I'm a big supporter of raising awareness of causes and issues, encouraging people to rally to bring about change. Yet when it comes to autism, a day or a month simply won't suffice. On various media outlets over the past few days, individuals have been sharing their insights into the realities of autism. Some were identified as "experts" which, in my opinion, is a term that needs to be affixed carefully. There was one - a mother - who spoke about raising her child with autism, sharing the realities with an emotional overlay that was as real as it gets. This is the true expert.
Two of the other expert perspectives in particular stood out to me, each warranting a response and further discussion. And while there may be those who might question from where I am gleaning my insights or upon what soapbox I'm standing, I'll say that after spending 15+ years in the trenches in this arena both professionally and personally, I'll take my chances.
One of the experts I'm referencing stated that parents need to push for services for their children. Absolutely true. Could not agree more nor cannot overemphasize the importance of parents taking charge in this regard. Yet there was, and continues to be, a critical oversight here and one that is consistently overlooked. It's that parents need to learn *how* to push for services for their children, particularly in school where the lion's share of these services need to be accessed.
There is an assumption, and a misplaced one at that, that parents automatically or miraculously acquire these skills ... that somehow these skills simply appear after their child receives an autism spectrum diagnosis. And this assumption even occurs with parents themselves who, in their jobs or professions, may have skills that they "assume" will transfer to parent advocacy and school interactions, but sadly do not.
Just like the social skills/social thinking that their children need to learn through direct instruction, parents also need to be taught how to navigate through the educational arena in order to secure the services that experts continue to state (and parents know) their children need. And need now. I often say that special education requires a master's level of skills that continue to evolve over time. Telling parents that they need to work hard over the long haul to get their children what they need is one thing. Teaching them how to do so is another thing entirely.
The other expert on a different media outlet stated that as children reach high school, they need to learn life skills. What? As they reach high school? Ever hear the expression "too little, too late?" Here's what's wrong with this statement.
Part 1 -- we first need to acknowledge that there's a stigma attached to the phrase "life skills" so we need to rename it. Parents (and others) equate it with things that, for many children on the autism spectrum including those with Asperger's Syndrome, simply do not apply. But there's another huge bucket of life skills that they most definitely *do* need to learn (and be taught) in order to have any hope of successfully transitioning after high school graduation into college, employment, or independent living. Once we eliminate the barriers created by the words "life skills" and broaden what it means, we can then begin to ensure that these skills are taught starting in preschool...and for all children.
Part 2 -- when the teen reaches high school, it's far too late to start thinking about the "life skills" they will need to transition into the adult world. Even though transition planning is now supposed to begin at age 14, most schools pay little attention to the skills our children need to live as adults in the world. We don't start to teach reading when the child is 12 years old, so why would we wait until the child is a teen to begin teaching these critical skills? Skills that are considered "life skills" need to hold equal weight with academic skills in terms of their importance. And for some children, they're even more important. This isn't an either/or scenario and parents should not be forced to choose (and this happens frequently) between helping their child improve their reading level or how to complete a job application or to live with a roommate in college.
The attention to autism this month and any month helps to raise the volume of discussion about a diagnosis impacting families, businesses, and our society. And whether you believe the recent CDC stats or not, the reality is that there are millions of children and teens today with an autism spectrum diagnosis growing up to become part of our adult world. As future employees, tomorrow's college students, and the next generation of parents themselves.
Examining how we're approaching autism is not an easy topic nor task, but real change is never easy. What it does require is for us to honestly assess whether we're providing parents with what they need to effectively help their children succeed in school and beyond. And it also requires us to closely examine whether we're truly doing what we need to do to help our children reach adulthood as prepared as possible. This requires more than a day or month. It requires a lifetime.