This month is very focused on autism awareness, which unfortunately was hijacked by Autism Speaks and turned into Light It Up Blue. Now I’m all for raising awareness and support, however not through an organisation such as Autism Speaks. I’m going to be explaining why I won’t be ‘lighting it up blue’ and why I don’t support Autism Speaks; however I do fully support autistic individuals and their community.
Autism Speaks is an organisation that focuses on finding the cause of autism and ways to treat it. They are dedicated to finding a cure and take on a medical focus on autism; they look at it as a disease that harms lives and ruins families. These views are apparent throughout their 2009 campaign video which received backlash due to their horrific focus. In the video you are addressed by autism in first person, resembling some sort of monster you were scared of as a child. According to the video autism ruins marriages, bankrupts families and takes away your children. The worst part about their campaign is that they’re one of the top autism organisations, meaning they have influence on families and autistic individuals. If someone who knew nothing about autism watched their campaign or read their website they’d believe it to be a disease worse than cancer. It is because of these harmful views and opinions on autism that families have killed their children because they wanted to get rid of the autism. If you search online for articles about parents murdering their autistic children due to the stress, burden or to try to ride their child of the autism you’ll be greeted with thousands and thousands of articles.
Knowing autistic people myself this deeply saddens me and I’m disgusted by the views that Autism Speak represents. Autism is NOT a disease and does NOT need to be treated. We, as a society, need to understand and accept autism. We need to work together to make sure our world is more enabling for not only autistic individuals but all individuals with special needs, mental health problems and disabilities. The services we have in place aren’t always inclusive, even if they claim to be. Our education system isn’t even the best for the ‘average’ or ‘neuro-normal’ child never mind children who need extra or different support.
In 2013 an 18 year old boy who was autistic and suffered epileptic fits drowned in a bath tub in a supported living facility. This boy was known as Laughing Boy (LB) due to his mother’s blog about their lives. When this tragic incident happened the facility reported it by saying he died of natural causes, however his family questioned this and asked for the case to be reviewed. It turned out LB had been left unsupervised when having a bath and had had an epileptic fit and because no one had checked on him he was left to drown. Due to this his family started Justice for LB and the LB Bill. If services and society had a better understanding of autism and adapted to meet their needs then maybe this tragic event could have been avoided.
We need to stop viewing people who are ‘different’ or have certain needs as a problem or a burden. We need to start supporting them, loving them and most importantly listening to them.