A Facebook friend, a mother with an autistic child, called attention on her profile last night to an “Autism Mom” hoodie that she’d seen advertised:
It’s hard to read the writing on the hoodie. It says:
A Superhero With
Messy Hair, Bags Under
Her Eyes, Stung Out
Nerves, Who Has A
Happy Child Because
Of All That She Does
The puzzle piece icon is underneath the writing.
My friend’s comments on the hoodie indicated that she wasn’t sure how she felt about it. I have some thoughts (obviously)
First of All…
Let me first say that, having worked in family support positions, I realize that parents of autistic children (and children with other disabilities) are often under enormous strain. I remember more than a few meetings with parents about their children where I changed course and said, “You know what? Your child’s actually doing okay right now. I’m kind of worried about your stress level. What can we do to help you?” And why wouldn’t parents feel stressed? Funding is constantly being cut. Wait-lists for supports get longer and longer. Even crisis services are difficult to access. And I know from my work doing planning for youth transitioning into the adult system that parents’ fears for what will happen to their adult children after they’re gone are ever-present and very difficult to deal with. I felt these fears too, seeing how little was available for the young people I was supporting. But I got to go home at the end of the day. Parents don’t get to do this.
I would never want to come across like I’m minimizing the potential stress involved with raising a disabled child. I’ve been privileged to see the genuine joy that families take in it, and working with those families was the best part of my job when I was in the field. But the unique challenges and stresses also need recognition.
It’s difficult to strike that balance between acknowledging the challenges involved in raising a disabled child and validating parents’ legitimate needs of frustration and getting across in general a more disability-positive in general that all parenting is difficult and that children are children – disabled or not, some have more complex needs than others.
This hoodie doesn’t strike that balance well.
This hoodie contributes to messaging that’s proving terribly dangerous for autistic children, who are murdered by parents and caregivers in shockingly high numbers. It says that autistic children cause their mothers nothing but grief and that autistic children can’t be happy unless mothers have worked themselves into high levels of stress and potential ill health. It reinforces the general stereotype that those who parent or do caretaker or support work for disabled people are “saints” because our needs are so difficult to meet and the specific messaging (that Autism Speaks has been shoving in our faces for so long) that autism is a evil entity that steals children and destroys families and that must be eliminated at all costs.
It’s also terribly shaming. Children (autistic and neurotypical) can be unhappy for a lot of reasons. Sometimes the reasons can be very difficult to address and can involve a wait-list for supports and/or treatment, a waiting period for treatment to take effect…the treatment may not work, and everyone has to start over…and some families have access to supports and treatments that others don’t, for a variety of reasons. But this hoodie would have mothers of autistic children believe that if their child isn’t happy, it’s because they aren’t trying hard enough. That’s a horrible thing to have pushed in your face when your child is suffering and you really are doing everything that you can, and it makes me furious.
And what about autism dads? Fathers don’t care about their autistic children and work hard to try make them as happy as possible? Ugh. This hoodie makes me more and more annoyed the more I look at it.
Doubtless some people will think I’m overreacting, but I’m a writer…words matter to me.
On An Unrelated Note
American friends, you’re probably aware that you have an election coming up.
I’ve been addicted to CNN for the past six weeks. I’m to the point where the thought of Donald Trump as President makes me feel physically ill. I’m begging you to keep him out of the White House.
Anyhoo. Have a great weekend and a happy Halloween!