My Autism Utopia
Do I have an Autism Spectrum condition; am I Autistic, or am I a person with Autism? After 28 years advocating I still don’t know.
Do I want to Light it up Blue for autism awareness / acceptance / understanding / action? Or do I want to accept autism every single day?
Are we born Autistic or do we “get” Autism from vaccinations, food colourings, gut issues, nut allergies or gene defects?
Do I want research to focus on the cause of Autism? Or should I want research to find a cure for Autism? Or do I think research should focus on whole-of-life supports for best outcomes for Autistic people, in school, at work, in old age?
Are Autistics less; broken; needing to be fixed? Or are those with Autism perfect as they are?
Who has higher Autistic needs… those who don’t communicate verbally, those who self harm, or those who are severely anxious? And don’t dare utter the words high functioning or low functioning - that’s not politically correct… and then there’s the “Oh, you must only have mild Autism?”
Who’s needs are most important – Autistics themselves, parents of Autistics, Autistic adults, or the elderly with Autism?
Autism Awareness month tends to bring out the best … and the worst in us.
I’m really not loving all the ‘separateness’ in the Autism community at the moment. I’m finding it difficult to cope with the factions fighting and attacking each other on Facebook.
Social Media certainly has helped a lot of people get information quickly post diagnosis, but much of that information is cloaked in misinformation, judgment, blame and shame. Some of the advice is absolutely crazy, contra-indicated and just plain wrong. If you have a varying opinion you’re labeled a “troll” and kicked out of groups. People are posting things they’d NEVER have the guts to say face to face to people they’ve never met, who’s circumstances they can’t even begin to imagine.
And don’t get me started on people posting videos of kids or adults having meltdowns! That’s just downright disrespectful and will float around in cyberspace forever. Imagine being interviewed for your dream job by an employer who’s found that clip online? Do you reckon they’re going to take a chance on employing you… just in case it ever happens again?
Quite frankly, I think the Facebook community are missing the point altogether!
But here’s something I KNOW to be true: - WE ARE ALL PASSIONATE ABOUT AUTISM.
Perhaps if we lay down our warrior tools; if we joined each other, if we held out our arms and embraced each other - thanked each other for our tireless efforts on many different fronts; if we respected and validated each others opinions, we would understand that we are all on the SAME side.
We are all fighting for CHANGE for the next generation of Autistics.
Just for a moment imagine this… what if each and every one of us joined together worldwide?
In Australia the official statistic is 1 in 63 individuals have Autism, but anecdotally there are known to be 3 – 5 in every classroom. That converts to approx. 1 in 7 individuals having Autism. Add to that the parents and grandparents’ supporting them, and the number rises again.
That means that around 1 BILLION people worldwide have, or support someone with, Autism.
Imagine the roar of our voices, the power of our votes, the size of our army. Under a single, organized, united banner our POWER to effect change would be limitless.
What if every voice on every committee, in every support body, in every research project was AUTISTIC with the united, common goal of effecting change for the next generation.
We’d have targeted campaigns to redefine or create: -
- the diagnostic process
- the funding model
- the education model
- post school pathways
- adult support pathways
- independent lifestyle support
- research focus
- autistic aged care
Instead of change happening at the snails pace it has for the last 50-70 years I believe we’d see major overhauls of all systems occur in as little as 5 years.
Isn’t that what we ALL want?
OK, so it’s 2019 and most people say they are familiar with the characteristics of Autism. We all know it’s a difference in :- communication, social style, ritualistic behaviours, sensory issues, difficulty with change / transition..
But for the love of God please
- Tell me WHY different is wrong?
- Tell me WHY only the Autistics have to change?
- Tell me WHY you say you “know all about Autism” and then see a behaviour from the core characteristics and use punitive measures to change it?
- Tell me WHY you misread meltdown behaviour as “alcohol induced” and put them in lock up? Or as being non-compliant, defiant and a choice?
- Tell me WHY you just yell your questions louder to a non-verbal Autist?
- Tell me WHY you send parents of a self-harming Autistic child to PPP Parenting classes?
What I want for Autism /Acceptance Awareness 2019 and beyond is quite simple.
I want everyone in every community to understand the cognitive functioning style, sensory issues and biological processes of Autistic people.
I want Autism to be a nonissue, where every person is celebrated for who they are and the gifts they bring to the table.
No more “us and them” – just people seeing the talents, skills and gifts in every person around them. Instead of looking at what a person can’t do, let’s focus on what a person can do. And let’s make the tools a person needs to achieve their best, readily available to them.
Let’s recognize that we’re all an integral thread in the neurodiverse tapestry of the human race.
©Nelle Frances 2017
Nelle Frances is a parent, special needs Educator, Sensory and Social Skill Program Facilitator and Consultant. Through these roles she has gained extensive insight and experience with children, teens, young adults and mature and elderly individuals with Autism. Nelle focuses on decoding sensory-driven behaviours and understands that sensory input significantly contributes to all behaviours displayed by those on the spectrum.