I tweeted this out yesterday and I am still feeling the same way today.
Explaining it to people is devastatingly hard. I commend the attempt at understanding but unless you’ve experienced it yourself, you never know. For me, the exhaustion kicks in, both mentally and physically. The light sensitivity happens and being able to see gets increasingly difficult. Trying to be social is virtually impossible and continues to drain energy that is barely left. I get goosebumps, I physically look ‘drained’. My attempt at tasks that require my fine motor skills becomes a course in ‘how many times can I fail?’
Autistic burnout isn’t a made up thing- I just wish it was easier to explain to people. It’s not an excuse and it’s not like I consciously (or unconsciously) decided to be perceived as lazy or unreliable. There’s such thing as ‘too much’ and I feel as though that’s where i’m at.
This happens to me, and i’ve documented it before:
When I realized that Autism Speaks slogan was “It’s time to listen”, my heart sank.
I honestly felt like I broke in to a thousand little pieces that no one could pick up. It was the feeling of grief. The more I research, the more I realize how much Autistic voices matter.
The CEO of Autism Speaks is someone who has experience managing different health related foundations. Her name is Angela Geiger. As far as I can tell – She is NOT Autistic.
Autism Speaks Canada is headed up by Jill Farber and she has spent 15 years as a private consultant specializing in ABA. She is NOT Autistic.
It’s important for the verbal portion of the Autism community to speak up for not only us but for our nonverbal brothers and sisters. After all, we know best. This is who we are in every aspect of our being.
Wouldn’t it be nice for Autism Meetup groups and self-advocacy networks to have funding and get provided devices and tools to make life easier? Frustratingly enough, most companies need a “front” to do so. By that I mean a “charitable” organization with whom to “partner” with so it looks like they’re doing a DAMN amazing thing to benefit those who need it most. Why can’t they do it without the publicity or without a partnership? Money- simply put! Advertising is key. Looking good to those who are uneducated on the subject increases profit margins and a veil of “doing good”.