It’s April. It’s when people give a nod to Autism Spectrum Disorder, wear more blue clothing, change their facebook profile photos (am guilty), and, maybe, pat an Autism parent or person with Autism on the back for their daily victories. It’s Autism Awareness Month, or so many organizations that profess to help people with Autism would have you believe.
Autism Awareness: It’s a phrase that irritates me. Awareness rarely helps anyone, hence, my irritation. As little as fifteen years ago awareness was so necessary. There I was sitting in Walter Reed Hospital trying to figure out why all the teachers and caregivers were saying my son was not OK, wondering why the doctors were just as confused. Understanding the spectrum of Autism was just beginning. By that point, early help was gone for my son, because the medical community wasn’t aware enough. The schools weren’t aware enough. But to continue such a campaign today makes me cringe. Just because someone is aware of something doesn’t meant they are going to do anything about it. If you’re a person aware of the disorder, what are you going to do about it? Are you even asking yourself that question? If it doesn’t affect your daily life, you’re likely not even asking yourself such a question. And why would you? It doesn’t affect you. Awareness is a limp biscuit without action. Action in acceptance and support.
I have to ask myself that question: What am I going to do about Autism? One in 68 families in America have to ask that question (although there is new evidence that this might be 1 in 45! Dear goddess!). It affects me each and every moment of my day – including invading my nightmares. My son suffers with Autism. I always use a word like suffer, or endures, or fights; because, it’s a battle, it’s a sentence to a particular kind of prison, and it’s a bitch that makes you hurt. That suffering, battling, and hurting are only amplified by the lack of acceptance and support. Autism Sucks. Awareness is pointless without acceptance. Awareness is pointless without support.
Acceptance. Acceptance comes from first respecting that it exists (I get so tired of having to explain that my son is not Rain Man and yes, does have Autism Spectrum Disorder). That respect opens the door to understanding. Understanding Autism is difficult; I get that, because Autism is a spectrum. Many of us whose lives are affected by Autism will tell you: If you’ve met one person with Autism, you’ve met one person with Autism. No two people enduring #LifewithAutism are the same or need the same services. My son is fortunate, he can communicate basic needs. I often tell people he has a different operating system. What he can communicate was learned through conditioned experience. But when an experience is new, when it’s super emotional, or his comorbidity diagnoses take over – it can take him a very long time to process what is happening, and how to respond to it. Something that happens today he may not be able to tell me about it for five days, or ten, or even a year. But, because he is “verbal,” people assume he’s not on the spectrum. Whereas my friend whose son is also on the spectrum, may not even be able to communicate basic needs, desires, or emotions. In the Autism community we label that as levels of affectation – moderately, severely, etc. I dislike the terms low-functioning and high-functioning. Those are misleading and further hinder acceptance. My son can’t do dishes without pain. I know what you’re thinking: really? Yes, really. It took him nearly a decade to communicate this to me. Something about the in and out of the water overloads his sensory processing. If we knew how to undo this, we might be able to find a cure for Autism. He can shower, we believe because it’s not in and out. We have to accept this and move on and find ways that he can be independent and participate in life. But can society accept that something seemingly simple like washing dishes causes him a complete meltdown? It was hard for me to figure out, to accept. In part, I understand society, but we still need society to accept it.
Support. Support for the individual with Autism and their family is so desperately needed. The world needs to include us in its bigger vision for the future because we are many. It’s ridiculous that every advocate (normally a mama bear with claws out in perpetuity) has to fight the same battles at the same institutions over and over again. Why one family with Autism receives services from our community, government, or the medical field and others do not, is not support, it’s the opposite. I blogged last year that I am constantly having to put on my Autism Warrior armor. Every. Single. Day. This happens regardless if the battle is in the home with a sensory overload that lead to a moment of self-harm, or the various levels of government that say they have programs to help my now adult child, or fighting every person in my community to be more understanding, supportive, and accepting of my son. Support for me seems even further away. As a parent, your child is born and you imagine 18 years of growth and sharing, and you know as you nurse them or change a diaper that this moment will not be forever.
You know in your heart that one day they’ll be going off to college and moving into their own space. Having a child with Autism doesn’t mean that will happen. Right now, the doctors are telling me I have a forever 12 year old. As a parent, you can’t imagine such a thing until it’s upon you. But that doesn’t mean that I give up trying to find him a life independent of me. Just like the diaper days, I’m not going to be here forever. So now my goal is not waving him off to college or a career or his own apartment, but who is going to take care of him after I pass and how does that look so that he is safe, healthy, and happy. I wish that worry and process on no one. Because there is no help, no one road map, no resources. Many parents of children with special needs will tell you the same because once they leave school – it’s on you and you alone as the parent and advocate to figure it out. We’re all stumbling in the dark. A little light from the outside world, you know — support — would be great. So many families like mine need sheltered housing and employment for our members with Autism. They are capable, but employers need to care to participate in Autism acceptance and support. Infrastructure needs to be in place for them to have housing. I often say that if I won the lottery, I’d set up an Autism Commune. It shouldn’t have to wait until I hit the Powerball.
If you’re aware of Autism, but your daily life is NOT affected by Autism, I challenge you to move to acceptance and support. I urge you to donate your time, your resources to an organization of your choosing (my favorite is The Association for Science in Autism Treatment), and communicating to our city, county, state, and federal leaders that programs need to be in place to provide for people with Autism after their main caregiver cannot provide care anymore.
Don’t just be aware. Push it to Acceptance and Support. Please.