I have nothing against blue lightbulbs, blue shirts, blue pins, and the rah-rah feeling that comes attached to this date. I don’t mind that it extends throughout the month of April, and we get barraged with articles stating the obvious: Autism is all around, affects many -not just the individuals on the Spectrum-, and it can have a tremendous impact on any family’s well-being and sanity. (Ok, the sanity part was my contribution…I don’t think it literally says anything about that in any of the things I’ve watched, read or heard.) Beautiful, miraculous things can come from autistic individuals, yes…
Repetitive behavior, echolalia, obsessive-compulsiveness, tantrums, inappropriate laughter and crying, non-verbal communication, difficulty in potty-training, temporary regression, varying degrees of developmental delays and mental retardation, lack of coordination, seizures, mental health issues, and so forth can also be part of the Autism Package (the Deluxe version, the Lexus of Autism, the whatever.0, the Beyonce-on-world-tour.)
We light up our front and back porch with blue lightbulbs throughout April; we dress in blue on April 2nd. The other 364 (or 365, if it’s a leap year) days we spend living the Autism. Whether people notice and wonder, feel compelled to dig deeper, or simply accept the label and assume the rest is entirely up to them. Awareness is well and good, but can only lead somewhere if you actually put some effort behind what you’ve just been reminded exists.
For example, I am aware that poverty and hunger exist the world over. This would be enough, I guess, if all we are aiming for is “awareness.” We contribute to the local soup kitchen, donate cans for every drive we have access to, and know well-enough not to waste food or take for granted what is available to us when others suffer from want. By the same token, you can be “aware” that Autism exists, that it afflicts many by altering the way they process everything that surrounds them, and how their families live and worry about the future, but if all you’re going to do is wear a blue ribbon and post some trite shit on your Facebook wall or your Twitter feed…what did you REALLY do?
I am all for Autism Awareness. We need it. Believe me, when we’re walking around and we notice certain facial expressions, reactions, we tell ourselves “have they never seen a family with an autistic individual out and about on a weekend?” My guess is that every single person out there HAS encountered a family with an autistic individual while on an outing, but because we can all be SO different, we can also be SO obvious or SO unnoticeable.
Awareness is all well and good, but…how about understanding? If people shoot for anything today, let it not just be “oh, Autism is real, and it doesn’t present with clear-cut signs that are the same in everyone;” shoot for “hey, living with this, for yourself, for your entire family, for the people who spend the day with you at school, for your physician, dentist, medical personnel, is not as easy as it might seem. It’s also not as horrible as you might fear as you weigh in the balance whether to vaccinate your kid, or not. It’s not the end of the world, but it seems -some days more than others- like an alternate universe.”
Over the years we’ve encountered all sorts of people. We’ve met the ones who think Autism is a camouflage term for “our child’s a brat and we let him get away with everything.” We’ve met the ones who think if we curb wheat and corn products, J will be “cured.” We’ve met those who think prayer will show us the way (mind you, we pray…most of the time it’s under our breaths while struggling with a difficult situation, or hoping for clarity and a full-night’s sleep.) There are also those who think J can recite the phone book, play a quartet (all four instruments, of course, at once,) and paint canvases that will make us millionaires. There are those who think if they speak louder and enunciate better, J’s brain will light up and he will suddenly comprehend EVERYTHING. There are those who think we LIKE the attention of having an autistic individual. There are those who think they KNOW why J is autistic (pssst, it’s the vaccines…OMG, I TOLD you! Yes, they say he was like totally normal and then MMR-time and POOF! He was gone…speaking in tongues.) There are those who think the school and the system do all the work, and we just sit here leeching off whatever resources are available.
And there are those who ask. And there are those who valiantly sally forth into our territory and our lives, and realize that we’re the same as everyone else, but with a little more…mayhem? chaos? stress of a different ilk? thrown in. There are those who, in the middle of experiencing this, realize that we are funny, and we love each other, and we know have to enjoy things because sometimes the opportunity is brief…
I stayed in bed a little longer this morning to relax because, quite honestly, the whole med transition thing has been nosing into my sleep. I relaxed by reading Erma Bombeck’s At Wit’s End. Somewhere around page 64, Erma wrote about finding her own identity; mind you, this is not a deep, philosophical, life-altering piece of writing…at least not in the traditional sense of what is considered deep, philosophical, or life-altering. After much musing, Erma runs into correspondence addressed to her in her own name; she finds books dedicated “to Erma.” She realizes that she’s Girl Scout Cookie captain. She basically comes to the understanding that, well, under all the other layers of who she is, she is herself.
This is our identity: we are the imperfect, but loving, family of a young man who is autistic, and we walk around in the general population trying to adjust our situation to the general situation; we live in a contained space where we cannot simply remain because J needs to experience everything he can in order to properly adjust to a world not designed for him. We are, in the process of rubbing elbows with other people and their environment, awkward, skittish, confused, joyous, exasperated, clumsy, observant, repetitive, uncomfortable, discomfiting, annoying, annoyed, and -above all- doing our gosh-darned best…
We know that the world knows Autism is there. We appreciate the blue, and the bulbs, and the 60 Minutes-features on the subject.
Our concern is that tomorrow, and the day after, and the week after, and the year after, Autism will be here, and we WILL be dealing with it all the other days of the year whether the general population is aware of it, or not. The same goes for every cause…cancer of every organ or system you can imagine, disabilities and handicaps of every ilk, hunger, devastation, poverty, endangered species, illiteracy, don’t stop being an everyday reality when their Awareness Day or Awareness Month is over.
We are, all of US on this planet, more than just the ribbons we choose to represent us. A little curiosity about someone else’s shoes, and the terrain they trod, goes a long, long, long way…you can put the ribbons on the shoes, if you’d like, but understanding the walking conditions is even better.