Autism Awareness (ought to be Acceptance) Month is winding down, and unlike April, it will not go out like a lamb. The lion of autism injustice is still roaring, louder than ever.
While people are walking and gathering and fundraising and celebrating the wonders and gifts of autism (which I wholeheartedly support), the dark underbelly is growing. It’s time for us to face it.
Death has become altogether too common in the autism community. Every week or so there’s another story about an individual who has bolted or wandered and not made it home. And every month or so, an autistic individual is harmed or murdered by a caregiver.
The tragedies are too numerous to count, and happening much too often. They are also hitting closer to home – both in proximity and emotion.
Our children are in danger.
Issy Stapleton. Alex Spourdalakis. And now, Robert Robinson.
Last week, British Columbia resident Angie Robinson murdered her 16-year-old autistic son, then took her own life.
It’s easy to automatically blame Angie. How could a mother possibly take the life of her own child? What kind of parent does that?
A desperate parent. A parent who has reached the end of their resources, both physically and mentally. A parent who believes they have absolutely no other answer.
Nobody thinks they could ever get to the point where suicide and murder are a viable option. We all assume if things get dark enough, someone will appear with a light.
No parent, even a parent of a profoundly disabled or autistic child, wants death (I’m assuming the best, of course). Even at the very end of the rope, we are still hanging on, holding out for a glimpse of hope.
But occasionally, the darkness consumes everything, and no light can get through. There is no hope. Or, at least, that’s what a desperate parent believes.
Yes, the violent acts visited on children by their own parents and caregivers is atrocious and unimaginable. No child should ever fear for his or her life in their own home. I am not suggesting that what Kelly or Angie or Alex’s grandmother did are acceptable in any way.
But I do understand them. And I can understand how things could get so desperate for them that they felt they only had one solution.
It all comes down to support. The proverbial village. The village that supports the child needs to support the caregivers and parents, too, and therein lies the rub.
Autism supports vary from country to country, province to provice. There is no standard of practice or care even within a the US or Canada. Children and individuals with autism often need intense, one on one care, either in the home or a residential facility. Not every family is equipped to handle these situations, yet there is often little in the way of respite and support for them.
As far as I can tell, support for caregivers is pretty much nonexistent. If a family member requires placement or full-time care and none is available, what is the caregiver to do? Between a lack of professional support and the overwhelming costs of respite and residential care, it should really be no surprise that parents are losing hope.
There are two victims in these crimes. Two lives lost. Two stories that didn’t have to end this way.
When a desperate parent decides to kill their child and themselves as a way out, the entire autism community has failed.
We have failed the child by not giving them everything they need to live a happy life to best of their ability.
We have also failed the caregiver by not recognizing that a healthy caregiver is essential to a healthy, happy autistic individual.
We cannot expect autistics and their families to survive and thrive if they are constantly at war just to get support.
Any one of us could reach the limit. Or anyone we’ve met. Nobody knows just how much someone can take, and what will be their breaking point. We need wholesale change in the way we support autistic individuals and their caregivers. The reality is if the caregiver is too stressed and is getting no help or relief, the whole family is in potential danger. These horrible stories will continue until something big changes.
Caregivers need to be heard and helped when they reach out. By the time a parent reaches the point of murder and suicide, it’s too late. Families need care and support from the very beginning, not just when things get rough.
Until then, keep your ears and shoulders available for your friends, in real life and on the internet (which is oftentimes who need it the most). Be a friend, be aware of what’s happening. Also, don’t hide your situation from the world. Open up to anyone you think will take you seriously.
And let your local government know how you feel about caregiver support and the lack thereof. Be loud, and be heard.
If the system can’t/won’t help us, we have to help ourselves.
