There are things turning blue all over the world this month – buildings, bridges, monuments, in the name of Autism Awareness. This can only be a good thing, right? Apparently not.
American author Kim Stagliano is mother to three girls with autism and earlier this month she wrote in The Washington Post that she, ‘despises Autism Awareness Month’. Presented by the activist group, Autism Speaks, the month is ‘a celebration of the unique talents and skills of persons with autism.’
I dread Autism Awareness Month. As mom to three young women with autism – ages 20, 18 and 14 – I eat, sleep and live autism every day. My youngest daughter, Bella, can’t speak a word and was abused on a school bus, leading to a criminal case. My oldest, Mia, had hundreds of grand mal seizures a year from ages 6 to 10. My middle child is wracked with anxiety. For all three, I have to cut their food, tend to their monthly feminine needs, and bathe them. They will need that daily living assistance forever; when I die, a stranger will have to do those things for them. For me, this should be a month of solemn acknowledgement and education about a global crisis.
Many families of kids with disabilities (of course many do not see autism as a disability, but equally, many do) are living in crisis. In Australia, carers have the lowest level of wellbeing than any other group, and the highest levels of depression. People living with disability have one-tenth the opportunity for participation in activities outside the home than other Australians. Many families feel they’re at ‘breaking point’. They want more than awareness, they want real services that do more than avert crises. Stagliano continues:
But illuminating the Eiffel Tower does little to educate the public on the intense challenges of the diagnosis and the tough aspects of living with the disability. What the autism community needs isn’t a party, but a sense of urgency and true crisis. They need advocates committed not only to getting them the acceptance they deserve, but also the critical help they require to survive, in the form of social programs, education, safety and employment opportunities.
Related content: The extraordinary challenge and joy of raising a child with autism.
Stagliano suggests anyone who wants to support people with autism and their families do become more than aware – they should become generous – with time, money and kindness.
If your child has a classmate on the spectrum, invite that classmate to your child’s next birthday party. You know that cashier at the grocery store who doesn’t look at you as she takes care of your order? Smile at her, even if she does not smile back. The best way we can support Autism Awareness Month is to turn it into Autism Action Month. People with autism deserve a bright – not just a blue – future.
Here’s an organisation that’s started doing something real, here in Australia. Bestlife offers kids with disabilities (including children with autism) the opportunity to enjoy regular sleepovers with small groups of friends with professional adult support. It’s a big step towards independence for the kids and an invaluable break for families.
Have a look at their video: