Make that awareness and ACCEPTANCE!
It’s April 2, 2020 and life is very different for this autism family on World Autism Awareness Day. It probably is for you and/or your family as well. I’m keeping this real, so this blog entry may not be as uplifting as you’re accustomed to FYI.
For my son this staying home to flatten the curve for the COVID-19 virus has meant the loss of a lot of different things that are important in his life- school, friends, therapy and swimming- at least until it gets warmer. Luckily he has a good support system and a family that understands his needs during this time. We’re a multi-generational household, kids in college living at home and a visit to Grandpa is just a quick walk down the hallway. All of our immediate family under one roof-all day, everyday :)
I happened to stumble upon the message from the United Nations Secretary-General’s message for World Autism Awareness Day this morning https://www.un.org/en/observances/autism-day and the 3rd sentence in the 3rd paragraph is what jumped out to me. “Persons with autism should never face discrimination when seeking medical care.” I know from our experience that getting good medical care can vary A LOT, especially when the individual is non-verbal. It’s getting better, more doctors are familiar with autism and the training for doctors and specialists keeps improving. But these are unprecedented times and not everyone has taken Dr. Temple Grandin’s quote to heart “I am different not less” If you don’t know, Dr. Grandin is an individual affected by autism and an expert in animal behavior. You can learn more about her here https://www.biography.com/activist/temple-grandin
Did you know that there are states in this country that are prioritizing ventilators? And if you have a intellectual or developmental disability and live in one of those states, you may be denied a ventilator and only be given comfort measures. Indiana’s most recent ventilator allocation guidelines were developed in 2014. https://www.in.gov/isdh/files/Crisis_Standards_of_Care_signed_41814.pdf Indiana has several guidelines, but thankfully intellectual and developmental disability are not exclusionary for a ventilator in this state. For now. Because if this pandemic has taught me anything it’s this, what you think may never happen, can happen with little to no warning.
If you didn’t think so before, realize now that the fight for disability services is real and ongoing. Individuals and families are fighting right now for health care, education an employment services throughout this country and the world. But as a group, I think we need step up our game. Awareness is good, but ACCEPTANCE is what we’re fighting for. If those with autism and other developmental disabilities aren’t accepted, this BS of letting an autism diagnosis disqualify you for a ventilator is considered okay. It is NOT OKAY! Not to this autism parent who fights and votes. My son’s life has value regardless of his diagnosis or IQ.
So what’s the difference?
Awareness is knowing that you can hire someone with autism. Acceptance is hiring them.
Awareness is knowing that those with autism learn differently. Acceptance is teaching those with autism in the way they learn.
Awareness is knowing what autism is. Acceptance is doing what you can to help those affected by autism achieve their goals. FYI, they are same goals everyone else has- like breathing.
Let’s fight for ACCEPTANCE together!