Birthright

Justin, my seven-year-old son with autism, recently asked me to get lost. Yup, I surprised him at school, but the surprise was on me. I approached him from behind, nudged his shoulder and was very gently greeted with, "what are you doing here mom? I thought I told you not to come." Eventually I left. But not before being laughed at by a bunch of seven-year-olds. Now every time I visit, the kids rush to warn Justin that I'm heading down the hall [insert wicked witch music here].

So, every experience has a lesson. What I learned here was that Justin was, indeed, growing up. I found this to be very confusing, especially following years and years of micro-managing his life. I lingered at the school from preschool through first grade. I closely monitored playdates and conversations. I still obsess over each GFCF meal, snack and supplement. I shop carefully for clothing that does not irritate his senses and keep household sounds/smells to a minimum. I have F.A.Q. time with each parent who invites Justin over to play- do you have pets...will the kids be eating...any loud or sudden noises...can you help him with buttoning if he needs to use the restroom...are you familiar with the epi-pen...would you please speak slowly and give short instructions.....

To varying degrees, this is what parents do. We parent. We speak for them, advocate and do the things that kids cannot do for themselves, but with the intention for them to learn how to do it all for themselves one day. For the love of getting some rest, we hope they will, as adults, have that capacity.

I was "surfing" the other day and came across information from an autistic adult. The person was frustrated over the public advocacy taking place for autistic children. He felt the gigantic organizations and parent advocacy groups did not accurately represent the needs of autistic people. Further, he opposed any dietary intervention, saying there's nothing wrong with their bodies and all autistic people should enjoy pizza, ice cream, milk, breads, cookies, sugars and all things gluten and casein. He expressed that the bulk of public advocacy was capitalistic, and most of it somehow cast a dark, pitiful shadow over the prognosis of those with autism. Autism, he felt, should be celebrated and the world at large should move over and embrace autistic people as they are.

But a happy, successful marriage between these two entities can exist. Most advocacy groups, which have grown simply in direct correlation to the increased cases of autism, consist of parents of autistic children. These parents, like myself, want to foster independence and we're planning ahead, just like any other parent would. For now, though, as we watch our young children struggle to communicate, sleep soundly and enjoy the sounds of nature, we are compelled to do something to help them. The interventions, though, must be selected carefully. In Justin's case, biomedical changes have made him physically healthier and happier.

Truth is, Justin, as an adult, may or may not want to continue what we're doing for him. The autistic young man is right in that autistic people need opportunities to speak and act for themselves...as adults, that is. For now, it is up to us to make informed, fair decisions about our own children's needs- much of the information provided by hard work and research from advocacy groups. I really hope Justin continues the diet, spirituality and other approaches we are taking. But like that experience in the classroom, I will feel a bittersweet sense of victory if one day, he speaks for himself and decides to ditch all that stuff. It is his birthright.