I had big plans for April, which is autism awareness month. I had this idea that I would make it my autism “action” month – 30 days of doing things to improve the lives of people on the spectrum and those who care for, support and educate them.
I started with this:
(Image in video is via Jill at Yeah. Good Times., who awesomely coordinated this event (and it is now an annual memorial). Music is Adagio performed by Kronos Quartet. You can listen to the album here: You can buy it here.)
There are too many names in this slideshow. Too many. And it is hard to imagine how anyone – anyone - could say anything to disparage a memorial event the purpose of which is to remember the lives of autistic children lost after wandering. But, this is the Internet, yo. It is the virtual playground of trolls, the cyber-land of nutters, the fiber-optic assembly of asshats. THEY WILL FIND A WAY! Commenters criticized the wording of the memorial avatar. They criticized the organizers of the event for not being autistic (or autistic “enough”). They criticized the parents of deceased children for their children’s deaths. It was unreal. It was unfair. It was unfeeling, unbecoming, uncalled for.
Since April 1, my FB and Twitter feeds provide a steady diet of criticism coming from every end of the spectrum (and I mean this both literally and figuratively). It is now the fourth day of April, and I have had it. I feel like I’ve gone ten rounds, and I haven’t gotten out my first blog post.
Right now, I’d give the autism community a big, fat, felt-tipped red pen “F.”
The “autism community” – as it is often called – is anything but a community.
It seems reasonable – at least superficially so – that if you are autistic or you care for someone who is autistic, you’d have something in common – knowledge about autism. Sure, your perspectives and depth of knowledge will vary, but it doesn’t seem beyond the pale to infer alignment toward a single goal: improving quality of life for autistic persons along every point on the spectrum. Of course, you couldn’t be more wrong if your ass was your elbow. Stick your foot in the autism pool to test the water, and you will learn nearly immediately the myriad ways you are different than anyone who does not share your point of view: you are not autistic, you are a parent, you are not a parent, you are privileged, you are high functioning, you use the wrong words, you are a person first, you are autistic first, you lack empathy, you cannot understand, you … I could keep going. The point is – well – somewhat ironic. We don’t use the “diversity” of our “community” as a springboard for acceptance. Au contraire. The point (pun intended) is used as a sword to attack a speaker on a personal level as a means of invalidating the original author or commenter’s opinion/point of view/experience (and, for that matter, her very existence) because s/he lacks the “right” characteristics to have an opinion/point of view/experience.
Who needs this kind of “community”? How is this helping my daughter? Seriously, I want to know. Because, right now, the only awareness I want to spread is the kind that keeps her away from this type of mean-spirited, destructive in-fighting.
There is no end to the litany of ways you will become “aware” that – as a parent or caregiver for an autistic person – you’re doing it wrong:
1. If you vaccinated your child, live too close to an electromagnetic field, gained too much weight during pregnancy, drank diet cola, ate soft cheese or raw fish, waited until you were older than 36 to have a child, colored your hair, rode in an airplane, talked on your cell phone too much, passed gas on a day ending in “y” or breathed anything other than pure oxygen during pregnancy, someone will tell you that YOU made your child autistic. And, really, what could make me feel better and be more effective at this parenting gig than “accepting” or being “aware” that autism is ALL MY FAULT?
2. Of course, while you are busy beating yourself up and tearing your heart apart because you “made” your child autistic, a group of adult autistic persons will be right there to kick you while you’re down by telling you what a complete failure you are as a parent and human being for having even ONE negative feeling about your child’s autism or for thinking for EVEN ONE SECOND that it is something bad or that could or should change. This applies whether you parent a child with mild echolalia or a compulsive tendency to smear feces on the carpet and bedroom walls.
3. Your pain won’t end there, though. Is your child one of the 1:68 US children who are autistic? You’re faking it! Does your child participate in ABA therapy? You’re a child abuser! Do you have a child “with autism” instead of an “autistic child?” You don’t respect your child! Do you think parenting a child with special needs, educational challenges, sensory processing disorder, language processing disorder, obsessive compulsive tendencies (oh – I’m sorry – focused joy), sleep disturbances, social anxiety, motor skill limitations and food sensitivities is difficult? You do not love your child! Do you want to talk or think about a cure for autism? You’re an enemy combatant! Do you focus on autistic children – maybe because you’re in the midst of raising one? You are robbing autistic adults of their “voice”! Do you have even an ounce of understanding for how a parent raising an exceptionally challenging child might reach the end of her rope when she has NO HELP and no resources? Murderer! Murderer sympathizer! Do you fight with your school district to get your child the free, appropriate public education to which s/he is legally entitled because you are legally obligated under compulsory education laws to send him/her to school? You are taking limited resources away from kids who can “actually” use them! Does your child sometimes (or often) experience anxiety / panic attacks or respond to sensory overload in public places by yelling, crying or lashing out? You are a lazy parent who overindulges her child! Do you ever wish you could travel, dine in restaurants, see a movie, cook only one meal at dinner or do any other activity you used to do before accommodating your child’s needs became your paramount concern? You are a privileged asshole! Someone call Child Protective Services! Do you support [fill in autism-focused organization here]? You are a moron!
I’d like to say that this list is tongue-in-cheek, but these are frighteningly accurate paraphrases of comments I’ve read in response to blog posts, news stories, articles, videos, etc. And, as a consequence of all this, I am now “aware” that the biggest danger to my daughter really isn’t the broader public and it’s “ignorance” about autism. It’s the damn Internet and the people who think a wi-fi connection and a keyboard entitle them to harshly criticize the heart-rending/difficult/painful AND the joyful/amazing/euphoric experiences of being autistic or loving/caring for an autistic person. Have I gotten some sideways glances and unsolicited advice about my daughter from strangers when we are out in public? Yes. But, those incidents are few and far between, and they DO NOT outnumber the times when a stranger has offered an unsolicited POSITIVE remark. No one has ever had the chutzpah to say to me face-to-face some of the awful, hurtful, mean and provoking things people write to me (and other parents) on the Internet.
So, this month, I won’t ask you to light anything up blue, to sport any puzzle pieces or post memes about being “au-some.” Really, when you think about it for just a moment, autism “acceptance” comes down to little more than just being “aware” of someone other than yourself, being a patient, decent, kind human being, and thinking before speaking. If it makes you feel better/productive/more informed, go ahead and read about Carly, Temple, John or what was curious about the dog at night. But, if you want to do something that will make a difference in my daughter’s life and the lives of everyone touched by autism (which is ALL OF US, btw), here’s a list of my suggestions to get your started:
1. Listen or read before you respond.
2. Think before you press “send,” “post” or “publish.”
3. Remember that the words to which you respond were written by a human being – a living, breathing, warm-blooded mammal with feelings and experiences that you cannot invalidate simply because you don’t agree with them.
4. Know that the Internet is big enough for us all. If your “voice” isn’t loud enough, find a way to amplify it; don’t blame the guy out-shouting you.
5. Be a change agent. If all you do is complain about a problem, you are part of the problem.
6. Set an example. Just because you have a constitutional right to be an asshole online doesn’t mean you have to be an asshole. It’s a tough concept, but rights come with responsibilities; actions usually come with consequences.
7. Choose kindness. Autistics often implore others around them to presume autistics are competent. I implore everyone – on the spectrum and off – to presume competence. There is no one particular state of being or experience that applies to all – neurotypical, neurodiverse, autistic (pick your label). Sweeping generalizations and gross assumptions are never the right choice.