Autism Awareness 2016

I kind of have a funny relationship with autism awareness month. I remember back when it first became a thing I was kind of hopeful that it would mean more awareness and better acceptance of and support for autistic people. Now every year I wonder what it is autism awareness month is actually making people aware of.

When I talk to people, nice thoughtful well-meaning people, who admit that they little to nothing about autism they invariably know three things about autism:

1. Vaccines are involved somehow.
2. The “modern” diet is involved somehow. “Modern” is in quotes because it seems to be code for whatever is readily available to the average American.
3. There didn’t used to be as many autistic people “before.” “Before” is in quotes because it seems to be an arbitrary time period dependent on the age of the speaker.

Often some mention is made of toxins and/or chemicals in connection to one or more of the afore mentioned big three that everyone seems to know about autism even though they don’t know much about autism. This is what the fullness of the lives of my children and the lives of thousands of other children, adults, and their families and friends has been reduced to. Err...
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Here are a few things that I would like people to become aware of this autism awareness month.

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1. Asking the average parent what causes autism makes about as much sense as asking the average parent what causes maleness or femaleness, right or left handedness, one child to grow taller than another, etc. If the parent you happen to ask happens to be well versed in neurological development, behavioral science, and human growth and development you might get a more in depth answer than you were looking for. But the average parent has their hands full with trying to understand what is going on with their child right at that very moment.
2. Life with autism is not just life with autism for the autistic individual. It’s life with autism for their family and friends too.
3. Life with autism can be rich and full and meaningful when we make the commitment to pursue rich, full, meaningful lives for our autistic family members and friends.
4. Most families are figuring out our lives with autism on our own. On our best day, we still need help keeping our heads above the proverbial water. Words of support are nice; action is far better.
5. Autism is underdiagnosed not over diagnosed. It is underdiagnosed in girls and in minority populations for a variety of complex reasons. Emphasis added on complex. The last thing we need is more simplistic thinking messing this one up.
6. The CDC prevalence rates that everyone gets excited about every time they publish new ones are always four years old and not from a representative sample of the US population. There isn’t data to back up the claim that there is an autism epidemic.
7. People who need services aren’t getting them. That’s what the CDC numbers really tell us. That’s what any parent trying to advocate for their minor or adult children can tell you. That’s what any teacher who has spent any time in a classroom can tell you.
8. Families need help getting through agency red tape to get access to services more than they need tips on where to shop for expensive specialty foods.
9. I don’t know if you’ve noticed but autistic people and their families get used as pawns in other people’s political battles. Does this mean we’re moving up in society or what?

I’m sure I could add more to this list but I’ll keep it short to start with. Happy autism awareness month! May you discover many new things you didn’t know before!