April is fast becoming synonymous with autism awareness now. The media cover it, charities promote it and even schools use it as a time to raise the profile of a condition that is guaranteed to affect several pupils, if not more, within their school. I’ve heard of everything from pyjamas days, sky dives, videos, poems and various hashtags circulating, all in the name of ‘autism awareness.’ I’m not against any of this and in fact my own daughter asked me herself if she could do something this month to raise awareness of the very condition that she lives with. I encourage her self advocacy so I’m using my own Facebook page (https://m.facebook.com/Faithmummy1/) and my personal profile to share her daily photographs on her behalf, since at ten she isn’t even old enough for her own social media account.
However, I don’t allow my daughter access to social media at ten and even more so during the month of April. The reason for this is because not all autism awareness is helpful for her. Here are some examples:
1. When people say they ‘brought awareness’ when actually referring to meltdowns.
It’s very common for me to see statuses saying things like ‘well we sure brought some autism awareness at the restaurant today’ which really means their child causes a scene of some sort, most likely due to a meltdown. Now I have a non verbal son who also has significant learning difficulties and who is classed as severely autistic. Meltdowns are common place both in private and public. However, my daughter is also autistic and she doesn’t have private or public meltdowns. She does shutdown which is a very different experience altogether, though rarely would the general public even notice.
By referring to meltdowns as autism awareness we are reinforcing to the public that autism only looks one way: it is loud, disturbing, obvious and upsetting. This isn’t how autism is for my daughter, nor it is how it is for everyone. Awareness like this isn’t helping my daughter to be included, accepted or understood.
2. When awareness becomes about colour, logos and individual charities.
Autism awareness isn’t a brand. It has no set colour, image, logo nor it is exclusive to one charity. I have seen people fall out over the colour they change their profile pic to during April in the name of awareness. How is that helping people understand my daughter better? My daughter is unique, individual and original and as she herself tells me often ‘it’s ok to be different’. Yet during the month of April we expect everyone to bring awareness using the same colour, logos, or charities. When awareness highlights divisions and friction it shows the public that autism is disjointed, argumentative and oppositional. None of those reflect my daughter in any way.
3. When autism focuses solely on difficulties.
My daughter is very aware of her struggles, however, even at ten she will tell you that not all her struggles are due to autism. She struggles to find footwear to fit her narrow feet, which even she knows is about her physical stature and unrelated to her neurological differences. Unfortunately the very diagnostic criteria for autism talks about deficits which makes explaining what autism even is quite difficult without being overly negative. I freely admit that when my son was diagnosed I did mourn and see his autism as a tragedy. As I learnt more, understood him better and learn to communicate the way he understood I changed. Now I delight in telling random strangers when he is flapping, giggling and smiling at lifts that ‘this is due to autism. It bring him and so many others delight.’ My son has significant difficulties and will need life long care but the public can clearly see that without me having to share. What they may not know is how excited he gets about mashed potato or lifts or certain songs.
When we focus on the struggles we are telling the general public that autism is something awful to fear, some terrible condition that afflicts sufferers and something we should be looking to cure. If my daughter could read some of the things said in the name of awareness her self esteem would plummet, she would become very self conscious and her anxiety would soar. I’m trying to help her see herself as amazing, wonderful and clever and I’d love the world to see that about her too.
So how do we do bring awareness in a way that really helps children like my daughter?
I can’t tell anyone how best to bring awareness of something that might affect them in a very different way to how it affects me. Autism can be hard, it can come with meltdowns and it is healthy to have different opinions on organisations, colours and logos. However, one thing we all need to do is stop and think about the bigger picture: is what I am doing helping the public to understand, accept and include everyone with autism? Am I bringing a balance? Would my child be comfortable reading what I have written about the condition they live with?
My daughter is ten. She attends her local mainstream school and she not only knows she’s autistic but she loves sharing her own unique views with the world. She couldn’t care less what colour you chose or what organisations you support. She doesn’t want the public to just know about her struggles, nor does she want everyone to assume she will have public meltdowns.
She’s just quietly, respectfully bringing awareness in her own way, and showing that despite all the arguments and negativity there is a different, more peaceful, way to advocate and bring awareness.
Autism is a huge spectrum affecting people of all nationalities, races, religions, sexes and ages. It’s vital we raise awareness but we need to do so in a way that not only helps my daughter but the many millions of others like her too.
Here’s how she is bringing her own awareness by using photographs.