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April is Autism Awareness Month and, more specifically, today, April 2nd, is World Autism Awareness Day. Cue trumpets… TA DA! Autism Speaks, an autism advocacy group, is planning all kind of events to raise awareness. People everywhere are wearing blue to raise awareness. Buying blue light bulbs. Buildings and world monuments like the Eiffel Tower are switching to blue lighting as part of the Light It Up Blue campaign to, you guessed it, raise awareness for autism.

Strangely enough, I have rather mixed feeling about today.

On one hand, awareness is important. Massively important. Currently, 1 in 68 children are affected by autism and some researchers estimate that by 2025, 50% of children born will be on the spectrum. Only as people become more aware of the autism spectrum and everything it entails (the good and the bad) will people be more understanding and accepting. No more looks of disgust and snide remarks about bad parenting when an autistic child melts down in public. No more thinking an individual is being rude because they can’t look you in the eye or even speak to you. No more calling an autistic person “a retard” with utter loathing. No more assumptions that this means your child will be like Einstein, or Rain Man, or Sheldon on The Big Bang Theory. No more quack doctors convincing desperate parents that giving their child bleach enemas will cure their autism (yes, that’s a thing). No more doctors convincing scared parents that the worst thing that could ever happen to their child is autism and thus touching off the anti-vaxx movement.

So, yes, awareness leads to acceptance and understanding and that is so, SO important. And I applaud all of you who are participating in today’s awareness campaign for trying to do your part. As a parent of an autistic child, I really appreciate you wanting to help.

However.

It seems like everything has an awareness day or event or campaign these days. It’s very…I don’t know, fad-ish. Wear blue for autism. Wear a pink for breast cancer. Dump ice water on your head for ALS. And it is all done with the absolute best of intentions. I get that. I really do get that and I don’t want to diminish the fact that people are trying to help. Organizations like Autism Speaks raise huge amounts of money by promoting these events. But do you really know where that money goes? In the case of Autism Speaks, only about 3% of money raised is used for family services and grants (http://www.boycottautismspeaks.com). Side note: There’s are some unsavory things about Autism Speaks that I won’t detail here. I believe, again, that they operate with the best of intentions and they certainly are very proficient at getting information out to the public (I have linked to them before in this blog and probably will again, as well as using some of their graphics), but… well, google them and see if that’s really where you want your money going.

My point is, is that a lot of these awareness events like Light It Up Blue is really slacktivism. You wear a blue t-shirt or buy a blue light bulb, but at the end of the day, those of us in the trenches are still in the trenches. And we need help, not blue light bulbs. (Oh, and to all the legislators I’ve seen on Twitter today, dressed in blue and proudly holding the certificate that you participated in Light It Up Blue? I’d much rather see you fighting for autism research funding. Laws passed that make it mandatory that autism therapy services be covered by all insurance policies. Easier qualification for medicaid if necessary. Better special education options in public school. The list goes on.)

So, how can you, dear friend, really, truly help?

  • Call your local autism centers and volunteer. I promise you, they’ll appreciate it.
  • Read and learn about autism. Meet autistic people and interact with them. Educate other people about autism.
  • Participate in fundraisers for your local centers. The runs. The walks. The bake sales. Whatever. It’s the local people who need the help, because they are the ones out there getting shit done.
  • If you know a family with autistic children, offer to babysit. Yes, even if their kid is a clingy, needy asshole. Trust me, parents of autistic kids (and all special needs kids) are perpetually exhausted and overwhelmed and we need help. Adam and I haven’t had a date night in nearly a year because we have no one willing to watch all 3 kids unless we pay out the ass for it. It sucks. (There’s a reason why parents of autistic and special needs kids have a higher divorce rate than the regular population. Parenting is hard enough as it is, but it’s really fucking hard when you’ve got a special needs child.) Reach out to autism families that you know and offer to help. We need it, even if we’re afraid to ask for it.
  • Encourage kids, teens, and college students to explore careers in autism services. Waitlists for services are sometimes years long and that is only going to get worse as more children are diagnosed. There is a huge need for OTs, speech therapists, physical therapists, social workers, special education teachers, and BCBAs.
  • Lobby for more/better services in your community and your public schools. Contact your legislators. Raise some hell, people.
  • Encourage your typical child to make friends with an autistic child. Invite them to birthday parties. Give talks at school about autism.
  • Donate money directly to local centers and local universities doing research. Seattle Children’s Autism Center will gladly take your contribution, as will University of Washington’s Autism research program. Look around your community and see where your money can best be used. For my friends in Florida, C.A.M.P. Ability in Clermont is a great organization. (As always, before you donate money, research the organization and see how your contribution will be used.) And don’t forget, your donations may be tax-deductible!
  • If you see a child struggling in public or melting down, don’t judge their parent or caregiver. Don’t complain to management that your outing or meal was ruined. Don’t tell the parents to get some control over their child. Instead, smile encouragingly or, if you want, ask if there’s anything they need help with. Most likely they’ll say ‘no’ but, I promise, they will appreciate the gesture.
  • Don’t judge people for decisions they make for their autistic children (I know someone who went on a tirade of feeling all “betrayed” because a friend sent her autistic son to a religious school that ran counter to their religious beliefs. Seriously.) However, if you believe an autistic child is being mistreated, bullied, or abused (like the aforementioned bleach enemas), please report it at once to the authorities.

Honestly, I am so impressed with everyone spending today talking about autism awareness. But next week, everyone will have moved on to the latest and greatest cause of the day, while we’re still here, just trying to make it through the day.

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