It’s almost April, and you know what that means. “Autism” is the word of the day. Speaking of words, many of us were told:
“Sticks and stones may break my bones, but words can never hurt me.”
I think we all know that’s not true. Words can hurt a lot, even words that aren’t meant to be hurtful. So I want to talk about words.
If you are planning to raise awareness about autism this April, please remember: children and adults diagnosed with autism will be listening to your speeches and reading your blog posts and articles. This means your kids. If not your kids, someone else’s. And they often hear or read words like “tragedy,” “crisis,” “burden,” “expensive,” and “stressful” when describing their lives.
These words can hurt feelings and damage self-esteem. They can make children feel guilty and miserable, because something about them– autism– causes so much trouble and unhappiness. They might even wonder if their families would be happier without them. And no child should ever have to wonder that.
I’d like to suggest some other words to use.
- No one wants to be part of an “epidemic” or “public health crisis.” Instead, say “many more people are now being diagnosed with autism.” Also, please don’t compare autism to life-threatening illnesses like cancer. It isn’t fair to either autism or cancer.
- Many people argue about whether to say someone is “autistic” or a “person with autism.” Read arguments for both sides (the formal terms are “identity-first language” and “person-first language”), especially ones written by people with an autism diagnosis. If you are speaking about a particular person, ask them which term they prefer. Saying that someone is “on the autism spectrum” is usually a good compromise. Please don’t say that someone “suffers from” autism– it’s just too depressing!
- Instead of saying that autism is costly, stressful, and a burden on families/society, talk about how to make things better! Say things like “autistic people and their families need our support and understanding,” “people on the autism spectrum deserve access to more services and opportunities” and “we can all contribute to a better future for children diagnosed with autism.” Remind the public that proper education and work accommodations pay for themselves because they allow people with disabilities to live more independent and productive lives. Most importantly, remember that finding happiness and meaning in life are possible for all human beings, no matter how severely impaired.
- Suggest ways to help in your community. Encourage local businesses and organizations to plan autism-friendly events. Remind people to be patient and sympathetic when they see someone having a meltdown. Promote jobs for people with disabilities. Give money or technology to special education classrooms. Donate a book by an autistic author to your local library. Sponsor a disability-rights lawyer or expert on disability services to speak at a public event. Fund a field trip or summer camp for kids on the spectrum.
- Share positive stories. Every life has success stories and wonderful moments. We see great strides forward in the world of autism every day. Young people like Carly Fleischmann, Ido Kedar, Dillan Barmache, and Jordyn Zimmerman are changing our understanding of autism, showing us how much is truly possible even for those who are profoundly disabled.
Create hope, not despair. Spread love, not fear. Move beyond “awareness” and aim for acceptance and inclusion. Our children are worth it.
[Keep reading. I’m not actually talking about autism]
No one wants to admit this. There is a crisis in this country and across the world. An epidemic, if you will. There is a terrifying large percentage of people with a certain disorder of brain function that involves major deficits in many key areas– including sensory perception, attention, reasoning, communication skills, the ability to prioritize appropriately, and expressive empathy (the ability to respond appropriately to the emotions of others). No one knows for sure what causes this disorder, but both genetics and environmental factors seem to contribute strongly.
These people need our help. Without intensive intervention, most of them will never recover, although some do improve greatly over time on their own. Unfortunately, very few of them are aware that they need help, and even fewer accept that help when it is offered. Teaching them is a long, laborious, intensive process requiring massive amounts of repetition. They just don’t listen. Even when we carefully tailor lessons to their learning style, they learn so slowly, and are so resistant, that it is easy for us to want to give up on them altogether.
We must not give up. These people require billions of dollars worth of services every year. They waste much of their time on worthless obsessions and activities that are useless at best and outright harmful to themselves or others at worst. And while most of them are non-violent, far too many cause serious stress and even pose a physical danger to their families. Many of them become aggressive when asked to change even minor habits and beliefs.
Despite the vast amount of scientific literature on this population, we’ve made very little headway in terms of developing effective strategies to change their problematic behaviors. I should acknowledge that not all people with this disorder demonstrate those behaviors. Some are very high functioning– we tend to see them as quirky rather than burdensome. Others, however, are a serious challenge.
Something needs to change here. As hard as it is for us, as frustrating and heart-breaking as it is to reach out, day after day, to people who seem to have little hope of responding, we cannot simply give up. We need to put serious money towards research, towards training educators and therapists. We have to find a way to help these people become functional members of society, who contribute to the greater good and are no threat to themselves or others.
This tragedy must be halted in its tracks. Help fight the ravages of neurotypicality. The well-being of our children, our nation, even our planet, depends on it.
[Update!! Those who want a tool similar to this can download one for free from http://autismandhealth.org/%5D
I have heard many complaints from autistic people and other people with disabilities about their struggles in communicating with healthcare professionals, etc.. I propose a simple questionnaire for professionals to use. These would be standard intake questions, and the answers would be put at the front of the patient/client’s chart.
If you like this idea, please take this quick online survey!!!
If I get enough positive feedback, I will try to make this tool become a reality. I don’t know how, but I will try. Please help me spread the word.
(If you have trouble wti the survey, you can also comment here on facebook: https://www.facebook.com/notes/open-discussion-on-autism/suggested-questionnaire-for-healthcare-and-related-professionals/789224341139804)
So, I recently wrote a mini-article elsewhere (now available here: https://restlesshands42.wordpress.com/). I wrote the piece partly as a tongue-in-cheek parody of all the advice given about managing behavior in special needs kids… but I’m glad to see it being taken seriously as well.
The internet is full of information in the “autism community” (which consists almost exclusively of parents and professionals discussing autistic children) about how to “help” those of us who function differently, and how to love us unconditionally despite our flaws, and how to be “aware” of us, and especially how to change our behavior– kindly, lovingly, and with the best intentions.
But I see all this from the perspective of those standing in that spotlight (although I myself was lucky enough to grow up with a mother who believed wholeheartedly in letting me be myself and fought to put me in small private schools and other situations where I could function my best). And it’s an uncomfortable light to stand in.
When parents trade tips across the web on “managing challenging behaviors” in their kids on the spectrum, the AUTISTIC community (that is, autistic adults and young adults, and far more autistic children than neurotypicals realize are paying attention) sees a world that wants to fix us and make us into something other than who we are. We ask why we are always the ones who need to change. Why is foot-tapping (a common neurotypical stim) socially acceptable while rocking (a common autistic stim) is not? Why do parents and educators focus constantly on our differences and deficits rather than our strengths and joys? Why are we always the problem to be fixed, the burden to be endured, the puzzle to be solved, the ones who are “hard to love”?
Again and again, we press back. Echoing Amanda Baggs “In My Language” video (http://www.youtube.com/watch?v=JnylM1hI2jc) Julia Bascom writes “until I move 97% of the way in your direction you can’t even see that’s there’s a 3% for you to move towards me” (http://juststimming.wordpress.com/2011/10/05/quiet-hands/). I wrote this article to remind neurotypicals to make that effort to move 3% of the way towards our world, towards our ways of thinking and communicating and interacting.
I also hope it will make them more aware that it is hard to do things in an unfamiliar way, to maintain constant awareness of your posture and words and how much noise you make. That it is frustrating and embarrassing to see yourself spoken of in clinical terms, to have your actions and interests dissected and discussed by all and sundry, to be singled out and put on display for simply going about your daily lives, pathologized for your personal quirks, medicated for your attempts to express yourself, misunderstood frequently, and constantly, constantly corrected.
And I wrote this for people on the spectrum, to remind them that they are not always in the wrong, that their needs are valid and should be respected, that it’s ok for them to feel confused and burdened and conflicted about their loved ones as well.
And I wrote it for all of us, to remind us that “normal” is not some objective gold standard that we should all struggle to achieve, but all too often a form of tyranny by the majority, and that creating a more equitable society requires that we take multiple perspectives into account when we decide what our gold standards should be. I wrote it to remind people that good intentions are not enough, and that just because something works for you doesn’t mean it will work for me. Being more “normal” would not make me a happier person, and if you try to force me to be more like you, it’s only going to hurt us both. So let’s learn to respect and accommodate each others’ needs. Let’s remember to make the efforts and the changes more mutual. And just maybe, we can build a world that isn’t so very frustrating for us disabled and neurodiverse folks to live in.