It's never easy to be an autism parent. Whether you're at home, at school, or in the community there are always challenges. Sometimes, though, we parents become so accustomed to meeting challenges head on that we can actually damage our child's reputation - and his or her opportunities for community inclusion.
Why does this happen? How can an advocating parent possibly have a negative impact for his or her child? In a sense, we're trained to be as tough and assertive (or even aggressive) as necessary. And sometimes, aggressive advocacy is the only way to go.
- In the American school system, parents are placed in the position of actually competing for scarce resources. If Jimmy gets a private school placement, the district may not want to provide the same high-priced program for Johnny. Johnny's parents, understanding this, prepare their case carefully and hire a lawyer. They know that the district is required, by law, to provide an appropriate education - and they'll get him the education they feel he needs, come hell or high water. Since Johnny's parents understand the IDEA (Individuals with Disabilities Education Act) as does their lawyer, and the district is unwilling to shell out thousands in court fees, there's a very good chance that their very assertive advocacy will result in the best possible setting for Johnny.
- In the American health care system, parents are placed in the position of having to fight for a timely evaluation, battle for insurance support for basic treatments, and insist upon the healthcare they believe they need. Sometimes that means being disliked by the clinic, the doctors or the billing staff - but if it results in action, a little negative feedback is a small price to pay.
- In the world of autism therapy, it can be overwhelmingly difficult to learn about, select, set up and fund treatments. Even worse, parents and clinicians disagree with one another about the "best" treatments. That disagreement is often vociferous and angry. A parent who allows herself to be buffeted by every point of view may be drowned in a sea of opinions. In the long run, most parents pick a point of view and stick to it like glue. Sure, they may lose friends - but so be it.
In the community, though, everything is different.
You'd like the local recreation department to include your child with autism in after school soccer by changing their approach to coaching and practice. You want your child's piano teacher to learn the basics of ABA so she can interact appropriately with your child. You feel the kids in Boy Scouts aren't reaching out to your child or including him fully, and you want the Pack Leader to intervene.
So you leap in, as you always do, with both feet - and an assertive or even aggressive attitude and tone.
The problem is, there's no underlying system in the community that supports your expectations. Yes, most community organizations would like to do their best for your child, and yes SOME organizations do have an obligation under the ADA to do so within "reasonable" limits. But no, there is no IDEA laying out parents' rights relative to the independent piano teacher - and there's no school district to enforce your expectations if they're not met. Your child's piano teacher, coach or pack leader is not required to become an autism expert, and your child's fellow Boy Scouts are under no obligation to make your son a part of the "in" group. You can sue the YMCA if it actually turns your child away, but the Y is not responsible for ensuring that your son finally learns to swim.
Worse, perhaps, than the fact that you may be unsuccessful in your very assertive attempts to change the world for your child is the fact that you, the parent, may actually make things MORE difficult for your child. When the grapevine paints you as an aggressive, difficult parent it may become difficult indeed to find warm, supportive, accommodating settings for your child. The art teacher who would have been glad to work with your child may shy away from dealing with you. The pack leader may share with her friends that "Johnny's a lovely boy, but look out for his parents - they're ferocious!"
If you don't deal with the community as you deal with the schools or the medical system, how DO you ensure that your child is included appropriately?
Often, the answer is modeling or proactive measures. Instead of expecting the community leader to know or learn appropriate inclusion techniques, offer to show him or her how it's done - and lend a hand. Instead of assuming that the coach will know how to make an effective visual teaching tool, make one - or two - yourself, and share them with the coach (or the whole league). Rather than walking away and expecting that the instructor, teacher or leader will just know what your child needs, tell that person what your child needs up front; write it down; and if there's a question, be prepared to step in to help. Not only will you build good will, but you'll be able to tell AND show best practices for your individual child's success.
When it comes to kids with autism, there's no one size fits all answer to community inclusion. You're your child's best advocate - but in the community, you're also his cheerleader, his support team and his problem shooter. As a parent, of course, you really are all that and more, whether your child's autistic or not.