I can remember like it was yesterday — the day we were told my son is autistic. I have to say, I was overwhelmed by my conflicting emotions.
I didn’t know how to feel, what to do or how to react. I was numb.
In the days that followed, it began to slowly sink in, and really, to be honest, nothing had changed. Except deep down I felt a sense of relief that I had been right all along. And at the end of the day it was just a label. My son was no different; he was still him.
Life ticked on as usual.
What I did next I presume all parents do at one time or another — I found myself with the laptop on my knee Googling “autism.” I just couldn’t help myself.
And oh my goodness what a load of rubbish there is out there on the Internet. It’s enough to scare parents half to death. So much misinformation and ignorance to be found with every click of the mouse. It made me want to wrap him head to toe in cotton wool to protect him from the world.
I also vividly recall sort of mentally ticking so called “symptoms” off like a list.
Well yeah, he does this.
And I suppose sometimes he does that too.
Oh, but no not that… He never does that.
I comforted myself when I stumbled across the links between autism and self-injury. Children who do that must be really “severe,” I thought to myself.
I was wrong.
The anxiety that lives inside my son kind of moves and shifts; it confuses and lulls you into a false sense of security. Its symptoms can increase and decrease according to its environment. And “high-functioning” label didn’t mean my son got a free ticket to bypass the more worrying and far less talked about sides to autism – like self-injury and anxiety.
I soon realized his anxiety could consume him. I love my little man more than life itself, but if you told me if I could lessen his anxiety somehow, my reply would have to be, “Where do I sign up?”
If the doctor had told me that one day in the not-so-distant future my son would have self-injurious behaviors (SIBs), I would have cried there and then. No one wants that for their child, autism or no autism.
But this is exactly where we found ourselves last year, drowning in an ever-spiraling
whirlpool of anxiety. This vicious cycle engulfed him, and I just couldn’t drag him from the darkness. It broke my heart. If I could, I would have swapped places with him in a heartbeat; I just wanted to take his pain away.
He became so consumed by his anxiety that it became extremely challenging for him to learn at school. Just the process of getting there was draining him.
So we put his world on pause and reduced his school attendance to two hours a day. We had to reassess everything and modify his environment drastically for the sake of his mental health.
It was a long and slow journey to recovery — I mean months, not weeks. But we had fun. We went swimming and dive-bombed in the deep end of the pool, savoring each experience and taking our time. We walked the dogs and got wet and muddy; we baked cakes, making a right old mess of the kitchen. And yes we learned math and English, but in his own way, not mine. Until slowly day by day he began to laugh and smile a little more.
He has started at a new school full-time and is genuinely happy there. So his anxiety has shifted again; it no longer consumes his every waking thought.
I knew what my son needed to get better; the world needed to mould around him. And the people around him needed to be flexible, following his lead, truly accepting him for who he was, and then and only then he would trust them to keep him safe and let go of his worries.
I fear that too often our kids are bent so much to fit into our world that they simply snap under the pressure, and this is where they encounter so many problems. Too often, the education systems are just so inflexible.
So you see, now I will never take anything for granted or make assumptions about autism ever again. I will never again think my son cannot possibly be affected in certain ways, and I will always look beyond the label.
Self-harm/self-injury affects approximately 50 percent of people with autism at one point in their lifetime, and I strongly believe we should be talking about this more than we do. It shouldn’t be something only discussed in the doctor’s office or behind closed doors.
As hard as this has been to share, I hope by reading it you can be stronger than I was, and act sooner. Don’t let your child be bent to snapping point. It’s truly my biggest regret.
My son is proof that there is always a light at the end of the tunnel, our kids have so
much to teach us about living in the moment; the dark days can become distant memories. And I am learning that my son has far more to teach me than sitting down and Googling “autism” on my laptop can any day of the week. All I have to do is learn from him, follow his lead and be strong.
Follow this journey on A Slice of Autism.
If you or someone you know needs help, see our suicide prevention resources.
If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255.
The Mighty is asking its readers the following: What’s one part about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.