Sometimes I despair at the lack of empathy in this world. We seem to have a collective inability to imagine ourselves in someone else’s shoes. This week I read about a school that think’s it’s okay to put a vest on a child in the playground so everyone knows he has autism. A five-year old autistic boy had to leave a showing of Dumbo because he got excited and jumped when Dumbo flew. In that case, another mum made a fuss and reportedly said she didn’t “particularly care” that the child is autistic and said he should be kept at home if he can’t sit still. Never mind the whole point of Dumbo is accepting those who are different than ‘the norm.’
Other disabilities aren’t even on society’s radar. I am mum to a child with a Foetal Alcohol Spectrum Disorder (FASD). Someone exposed to alcohol in the womb can have a range of brain-based challenges. The condition is little-known, isolating and affects each individual, each family differently.
Parents vent in FASD support groups about how their kids are always grumpy and never listen. They open up about destruction, rudeness, out of control scenes. Some days these groups are full of parents and carers describing in many different ways how, from their perspective, the person with FASD takes away the joy in their lives. It makes me sad. I imagine how these posts must impact those with FASD who read them.
I empathise with other parents and carers even if I don’t always agree with how they phrase things. We all need to let our hair down and scream sometimes. It’s important to do it where others understand why you feel the way you do. I have even felt this way at times myself, before I understood my son lives with underlying organic brain damage that happened to him before he took his first breath.
I remember one day, looking down at him when he was mid-tantrum. A child on the stairs, screaming, throwing, spitting. In my frustration I shouted, “Why are you doing this?” (I thought he was doing this to me.) He shouted back at me, “I don’t know Mummy!” That moment hung there, frozen in time for me forever. I saw deep into his eyes, where his utter distress was laid bare. He’d probably said this same thing a thousand times before, but that day, that one day I stopped and I saw. I listened. I accepted this was his truth.
None of us knew at the time that this was not a ‘tantrum’ but a ‘meltdown.’ His brain could not handle the input it was receiving. There’s a meme, “Kids with FASD are trying.” It says, “How you read that statement matters.” I have come to understand just how hard my little one tries. I know now, as another meme says, that he’s not giving me a hard time, he’s having a hard time.
But understanding doesn’t automatically bring empathy.
To tap into empathy, we have to try to think of situations we have experienced that might be similar, to remember those moments when we felt out of control, overwhelmed, confused.
Every single one of us has at some time or other felt that type of distress, anxiety and fear – maybe made worse by being hungry or tired or sore in some part of our body or soul. We probably were on a short fuse and most certainly not at our finest. How did we want others around us to act?
One time I was travelling in Japan. I ended up with the wrong ticket for a train. I got stuck at a barrier gate. No one who worked there spoke English. I don’t know Japanese. I couldn’t read the signs. I couldn’t see where I should go. I wasn’t sure when the next train was. I had become separated from my group. One other person who was going to the same meeting, someone much senior to me, stopped on the other side of the barrier and simply waited there for me. We hadn’t been travelling together. He was likely to miss the train. But he saw my distress. He just waited. I cannot tell you how his presence helped me that day. I think of it often now when I see my son becoming dysregulated, when the world overwhelms him and he starts to spiral. I try to stand there for him, with him, even if I can’t always fix the moment – just like that wonderful man did that day for me somewhere between Tokyo and Hiroshima. I wait for him.
We see shocking news articles about the lack of empathy toward autistic children and those with other conditions. And we rightly demand better treatment. But when it comes to FASD, despite the fact it affects more people than autism, those stories – let alone empathy – rarely exist.
Stigma is crippling progress and denying those with FASD their rights. Too many doctors consider an FASD diagnosis ‘a label’ and discourage parents from pursuing the needed assessments. Too many social workers fail to note or tell foster carers or potential adoptive parents about possible exposure to alcohol in utero because they think this somehow taints a child. Too many teachers don’t support assessments and Education, Health and Care Plans because they think the little one is ‘fine’ because he or she somehow stays in the chair all day, meanwhile falling further and further behind. Professionals time and time again insist the problem is just ‘bad parenting’.
Such shame, blame and denial of services for FASD are about as far from empathy as you can get.
My own empathy has grown by listening, truly listening, to the experiences of adults with FASD. They give voice to those thoughts, feelings and frustrations that the younger ones cannot yet put into words. They highlight for us the creativity, persistence, determination and unique kaleidoscope of abilities and strengths that that people with FASD possess and can build upon, once their basic needs are understood and supported. They help us see FASD through their eyes, as one leading voice in the UK, Lee Harvey-Heath called his awareness raising effort.
Every person deserves to know that there is a place for them in our society, that we each bring gifts, that we each make this world that much better because we are a part of it.
We can tap into our own empathy and model how we want the world to be, today.