It seems ironic to me, to say the least, that we received Monkey’s evaluation report with formal diagnosis an hour and a half before the beginning of Autism Awareness day. While we’ve been pretty sure about this diagnosis for 2 years now, it’s a tremendous relief to have validation. Today is also the day of our annual 504 meeting. (For those of you who aren’t aware of what that is, it is the meeting at which plans are made for special needs students with medical needs, who do not qualify for an Individualized Education Program.)
My Charming and Patient Husband has often said “Autism awareness? How much more aware can we get?” But today I read an eye-opening blog post from Autism Daddy that made some good points about the lack of awareness in the general public. And really, I have to agree if I give it some thought. Yes, the public may be aware that autism exists; but that’s far from a working awareness. To know it exists does not mean to understand the difference between a meltdown and a temper tantrum. To be aware that someone you know has autism is not the same as being aware of the difficulties they face, or the special needs that must be met. To be familiar with their lunch time medicine routine does not equate to familiarity with the hours of therapy that led to it and will probably lead to future medicinal changes. And it certainly does mean familiarity with the emotionally draining consequences of forgetting or running out of the medicines.
You know what else many people are not aware of? The fact that Autism isn’t simply a “mental illness” but a combination of thinking differently and a medical condition. We’ve come a long way in that regard, at least. The condition is no longer referred to as Refrigerator Mom Syndrome. Medically, we’ve come to the point of realizing that people with Autism have much more potential than was once believed. Therapy, love, and a variety of approaches can lead us to breakthroughs. We can’t “cure” Autism, but many of us do not want to. I wouldn’t change my Monkey and her delightful imagination for the world. What I would change is her coping ability; and we are working on that. That’s what the therapy and the 504 plan are for. And that is why we play games like the “problem solving game” at home. By teaching her the skills to be happy and successful I am not aiming to take away this condition, but to help her wade through this sometimes uncharitable world. Like a child with any other condition, we do what we have to do to help her meet her milestones. A parent of a child with Type 1 Diabetes helps his child to survive with insulin. A parent of a child with Cerebral Palsy helps her child to learn to walk. A parent of a child with Autism helps her child to learn social skills. In many ways, it’s not that different.
In a few ways, though, it is quite different. Since Autism is an “invisible” disability, it still gains stares and judgement. It takes a little strength to forgive those who suggest that she’d be “good” if we just spanked her more. It takes even more strength to keep my mouth closed and not respond with “That’s why God didn’t give her to you.” It takes strength not to be smug, and it takes strength not to feel humiliated, all at the same time. And it really, really takes strength to forgive people who see you parenting day in and day out and still judge you, assuming that your child’s behaviors or appearance must mean you are neglectful. There is no room for neglect.
There is No. Room. For. Neglect.
Not when it takes two hours to get her dressed in the morning, and an hour a day to keep her room marginally tidy. Not when you have to quit your job to be available full time for the constant phone calls from the school. Not when you are at the school almost every single day dealing with meetings, meltdowns, discipline, counseling, disruptions, and anxieties.
Yet there are people who can see all that and still assume that you must be neglectful, because no child would choose to look like that and behave like that.
And that hurts. It hurts me, it hurts my husband, and it hurts my children. And it hurts many other Autism families. So, yes, Autism Awareness is still needed.
Then there are the teachers who know nothing about Autism. Many do, but not from training. A few have the training, and many more have learned firsthand, in the trenches. Many, though, still do not know much about Autism. They are well-intentioned, but they’ve been taught nothing. I know this, because I have a teaching credential and Autism was never once mentioned in my schooling. Not once. I learned what I know by reading. And reading. And reading. And by watching and loving. The key to understanding Monkey has always been loving her enough to pay attention even when she can’t stop talking for 45 minutes and when she starts the same sentence over and over again until she gets it just right. You can’t understand someone’s reasons for what they do unless you understand at least a little of how they work. And with children who have extreme anxieties and trust issues, it can be very hard to get “in” unless they know how firmly you love them.
So, yes, Autism awareness is still needed.
If you are not Autistic, and you do not have an Autistic family member, and you think “awareness” has been overdone, let me ask you one favor. Please, ask yourself to take awareness a step further… to go beyond awareness of its existence, into the awareness of the special needs these amazing people have. Go beyond awareness of what Autism behaviors look like, into the awareness of the reasons for those behaviors.
For me, Autism isn’t a disease. It’s a little girl who, for a whole year, wrote “Monkey” on her papers where it asked for her name. It is a boy who talked about keys for two years, until he discovered Sonic the Hedgehog. It’s a child who is lonely, and really does want friends regardless of what the old books say, but doesn’t know how to interact with them. Autism is people. Like all people, they have unique needs and hopes and frustrations. If you take the time to get to know them — really know them, in the sense that you win their real trust because they know they can always count on you — then, you will be truly aware.