Here it is, World Autism Awareness Day again. I've been saying to myself what I say to myself every year on this date---I think I'm about as aware of autism as I can get. However, I've been thinking about what I'd like others to know about autism. Here's a list of the top four things I'd like the world in general to know. It's my own personal list---I am sure that everyone with a life touched by autism has their own list, different in many ways, but I can only speak for myself.
Most autism you see portrayed in the media is high-functioning autism.
There is a huge, huge range of abilities and characteristics all lumped together as "autism". In the past, there was actually a separate name for the highest end of autism, Aspergers Syndrome. But the powers that be, for whatever reason, have now lumped that in with all the rest. If you see Temple Grandin, or hear about Daryl Hannah, or even see the often hilarious Autistic Reporter on The Onion, you are seeing very, very high functioning autism. On the other end, there are children and adults like Janey. Janey is nine. She is not toilet trained. She cannot be left unsupervised for a minute. She can talk a little, but mostly only in scripted "I want.." sentences or in repeated phrases from videos. She screams, cries, injures herself and doesn't sleep regularly. Academically, she functions about at a 2 year old level. She is autism, as much as people with college degrees can be autism.
I am not looking for a cause of autism or a cure for autism.
There are many, many possible causes of autism. Janey's autism could have been caused by any number of them. In our daily life, it doesn't much matter what caused her to be autistic. And in Janey's particular case, there is not going to be a cure. I am not sure there ever is a cure for correctly diagnosed autism, but many disagree with me there, and that's fine. However, I don't choose to pursue a cure for Janey.
Autism affects family life extremely severely.
If you've ever spent even an hour with a child with autism, especially low-functioning autism, you were probably exhausted after that hour. Imagine that you have that child living in your house, every day, every night. Imagine that you can never, ever count on a full night's sleep, that at any moment, your child might start screaming or crying or biting themselves or trying to bite you, and that there seems to be no reason for this behavior and no way to soothe them. Imagine that you can never, ever count on going out in public as a family and having it go smoothly. Imagine that even close friends who would do anything to help you have admitted they can't watch Janey, even for a few hours. Imagine that you must sometimes make choices like whether to listen to a sibling tell you about their tough day or follow the rituals the autistic child demands, and if you pick the sibling, you know you'll be dealing with hours of screaming. Imagine a life that autism touches every single second, every single aspect of. That is family life with our particular brand of autism.
I love Janey more than I can possibly describe, and that guides all my decisions about her.
It is the most important thing in the world to me that Janey be loved, cared for and valued. I make every decision about her life with that in mind. For example, I am not sending her to summer school this year, because I am not comfortable with the program. I need respite, but more than that, I need to know Janey is safe and loved, just as any parent has that need for their child. In Janey's case, since she can't usefully tell me what happens when I'm not with her, I have to be ever-vigilant about who is caring for her when I am not there. At this point, I can't compromise on this---I can't accept less when letting her out of my sight. Maybe that is my biggest point. There needs to be quality education, care and respite for children with autism, because they deserve it every bit as much as any child. Without that, the burden on many families is near unbearable.
To all my friends, to all my readers, to everyone who has helped me through this life, and especially to Janey----Happy Autism Awareness Day!