It's Autism Awareness Day and I've been thinking about what I want my friends to be aware of when it comes autism. The first thing that comes to mind is that the autism in my daughter probably doesn't look anything like the autism you've seen in your child, your friend's child, the classmate of your child, or the neighbor kid down the street, because autism truly DOES look different in each child, because each of our neurologies is so unique and special. The second thing I want you to be aware of is that YES, we are sure that our child is indeed on the autism spectrum, so please don't ask me to justify it or prove it to you because it's not readily obvious to you, but do feel free to ask questions if you're truly curious. Autism IS a very interesting pathology and I do like talking about, but I don't have the energy to convince family members or strangers on the street that my child REALLY is on the spectrum. The third thing I think I want you to be "aware of" is that autism in and of itself is NOT a curse so don't feel like you have to be sad or despondent about our child's diagnosis. Many of the days we spend with our kids who are on the spectrum are pretty good. Our kids have so many innate gifts and have very creative ways of looking at life and solving everyday problems. But some days are not so good and some are even very, very bad. Please be aware that on those bad days when we look like we haven't slept in a decade or we're wound so tight we can barely move our arms, that we can't hear things like, "oh that's just how a typical four year old would behave", or "my 11 year old son says the same things!".
Trust me now when I tell you that our lives ARE fundamentally different at a cellular level. We want to relate to you and your family, and in some ways we can. Our lives aren't worse, just different. When our kids back-talk or refuse to follow an instruction, like, "please use soap AND water when you bathe" (and they're 16 years old and they have to be be told to do this everyday), or they can't stay at a restaurant, party, park or any kind of public gathering because it's too noisy and "chaosy", it has a cumulative exhausting effect on our spirits. In the heat of whatever battle is going on, there are many, many times when we as parents have absolutely no recourse because autism (at least for that moment in time) is in the driver's seat and while we can explain ourselves to our child until we are blue in the face, it will not change the outcome of that situation one little bit.
I think the last thing I want you to be aware of is that our kids are totally precious to each and every one of us. Although it may seem to you that all the confusion, angst and mysteries that autism brings to our family would be completely overwhelming, at the end of each day we know that our lives are richer because our special kids, with their special ways of looking at life, are loving us the best way they possible can. And I, more than anyone, need to remain accutely aware of that.