This World Autism Month, a mom calls for compassion
By Kimberlee Rutan McCafferty | March 27, 2019
This is a post by Kimberlee Rutan McCafferty, mother to two sons on the autism spectrum and an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). Kim is also the author of a blog about her two children with autism. She is the author of Raising Autism: Surviving the Early Years available on Amazon
Twelve years ago this month the United Nations passed legislation to establish World Autism Awareness Day. Over the years each day has focused on a specific theme- one year it was “empowering women and girls with autism;” one year “inclusion and neurodiversity;” another year celebrating the ability within the disability of autism,” all important and necessary issues which need to be addressed. I’m proposing a new theme for this year, one that includes all who dwell within the extended autism community.
2019: “A Call for Compassion.”
It’s beyond time.
Over the years as Autism Awareness Month has approached I’ve written on a variety of topics. I’ve moved on from autism awareness (which at least in my area of New Jersey I believe we’ve definitely achieved) to autism acceptance, touched on moving from tolerance to celebration. Each year I’ve called upon those not within the community to see my sons and other autistics and not just accept them, but embrace their differences, and celebrate their accomplishments. I’ve asked for compassion not pity when they (and I) have struggled, and I’ve seen such a positive shift in public perception since my eldest son was diagnosed fifteen years ago.
At least in this area of the Garden State I’ve mostly encountered knowledgeable and welcoming souls- most of the time when I chat with others about my boys I am told about a neighbor, a friend, a child they’re raising who is similarly affected. I have only once or twice in a decade-and-a-half encountered negativity regarding my boys- a nasty look, a muttered epithet, aberrations I’ve quickly forgotten. I know however there is still much work left to do to educate others about autism, to enlighten them to the beauty, the struggles, and the accomplishments of our children and adults. I will never stop talking about mine and how proud I am of the men they are becoming.
Yet there’s still work left to do- and I believe it has to start with all of us.
Over the years as a parent to two autistic children, one on the more severe end of the spectrum and one on the mild, I have read the work of many parents, autistics, and professionals who work with the autistic population. So much of the writing has influenced how I think about my boys, both autistics’ perspectives and those of parents as well. What’s been disturbing to me however is the huge divides across the community, schisms which don’t seem to be healing any time soon.
Those who vaccinate.
Those who don’t.
Those who advocate autistic self-determination.
Those parents of severely affected children who lament self-determination’s impossible dream.
Those who regard inclusion as every autistic’s ultimate goal.
Those who believe inclusion is not integral to their child’s progress or happiness.
Those who claim neurodiversity is the only path for all.
Those who claim a cure is the only sensible solution.
What disturbs me most is the black-and-white nature of both people’s writings and opinions. Time and time again I see no room, no space for introspection regarding each autistic individual’s needs as well as parents of autistic children’s needs and wants. From some writers I see the opinion that all children should be cured. From some, they are all perfect just the way they are. Others advocate that adult children should always be included in the community; some state they have no interest in socialization and parents should be allowed to create the adult facility that suits them best. Some insist all autistics should be able to forge their own adult path. Often parents grow increasingly frustrated when the needs of their severely autistic children transitioning to adulthood, those for whom self-determination rests exclusively with what they want for lunch or which DVD they’d like to see, are ignored.
But even more disturbing to me than some people’s one-size-fits-all approach is the commentary I’ve seen on blogs, articles, and Facebook pages. I’ve seen autistic people attacked. I’ve witnessed parents labled as ableists and vilified. I’ve watched thread after thread on Facebook elongate with hatred, dismissal, and hurt.
It’s time for all of us to stop attacking one another and start working toward what I know is everyone’s underlying goal- happy, productive and safe lives for all who dwell on the spectrum, no matter how mild or severe.
And no, I’m not looking for one giant kumbayah people; just a little progress.
Here is the truth.
Unless you’re autistic, you don’t know what’s it’s like to be autistic.
Unless you’re raising a severely autistic child with behavioral problems, you don’t know what that challenging life is like.
Unless you’re raising a mildly autistic child, you don’t understand the worries and concerns that embody the loving of a high-functioning son or daughter.
Unless you’re grappling with the difficulty of making “entire life” decisions for your adult child, ones that must last decades after your death, you don’t comprehend the enormity of this quest.
Ultimately, self-advocates only know what’s best for them.
Ultimately, each parent of an autistic child is the best arbiter of what’s necessary for their child, and their child only, if they can’t advocate for themselves.
We need to help one other, not break each other down.
So, I’m advocating this.
At least try and understand an individual’s viewpoint that diverges from yours. You might not agree with their ideas, but you might learn something new about your beliefs from listening to others’ opinions; in stating yours passionately but without venom someone else might come to understand your point of view as well.
This is where compassion, instead of cruelty, can purchase ground and grow.
And if you cannot find any commonality, if people’s positions are so thoroughly entrenched there’s no chance of comprehending a person’s unique and intensely personal experience with autism, what next?
I suggest instead of engaging in a discussion or written war with someone who will never try to comprehend your point of view and thinks they know what is best for you or your child, walk away.
People push my buttons too, it’s the hazards of being an advocate and a writer. But over the years I’ve tried to take that passion to prove my point and turn it into action, not an attempt to win over someone who doesn’t want to even entertain my point of view, someone who wants to influence my decisions for a child they’ve never met.
Take that energy, and instead research different living options for your about-to-be transitioning adult.
Spend a minute sharing your story with a mother of a newly diagnosed child and offer practical suggestions to help that family find peace.
Try again to get your son potty-trained.
Consider volunteering for an autism organization.
Instead of engaging in vituperative, ultimately unproductive banter, take a moment and do something kind for yourself.
It’s time we work not against one another, but together in our unifying goal.
It’s time to heal.