An Autistic advocate I really admire has recently decided that she will no longer use the label ‘Autistic’ and is no longer going to identify as an Autistic advocate. This is as a result of bullying from within the Autistic community who have criticized and judged her harshly because of terminology she has used, because of her beliefs, her opinions, her life choices…it’s really been quite horrible to witness. And it got me thinking….that whilst I am proudly Autistic, I don’t want to be a part of the elitist and ableist culture that seems to be growing in parts of the Autistic community.
Like this writer, I too am late diagnosed Autistic. I’m also mum to 2 Autistic boys. My diagnosis has been wonderful in many ways e.g. in how I understand myself and my differently wired brain. But I’ve been disheartened to meet and come across many outspoken Autistics whose behavior verges on bullying. I hoped I’d found my ‘tribe’ when I was diagnosed, but in truth many of the Autistic adults I’ve met try and dictate how other Autistic people identify and label themselves, they regard themselves as intellectually superior and talk down to neurotypicals (people with the most common/frequently seen type of brain). If you dare to think differently to these people they accuse you of ignorance or discrimination.
All the same tribe? Certainly the same species yet gloriously different! Photos taken at Sealife London Aquarium.
When abuse from my birth family almost broke me, my Autistic ‘tribe’ weren’t there. Their silence was deafening. Now I loathe functioning labels for many reasons, maybe I’ll write about that another day. But as someone who meets other Autistic people regularly through my work and through the communities I navigate on social media, I started to realize that amongst the ‘high functioning’ verbal and intellectually able Autistic population, there are some very mean spirits. There are people who aren’t kind. Who don’t accept others differences. People who are selfish, mercenary. Who block constructive feedback and seek adoration purely because they’re Autistic. That makes me very uncomfortable.
Then I realized something else…these types of people, who judge and talk down to anyone who doesn’t think and speak like them, exist in every neurotype, in every breed of human being. There are good guys and bad guys in every walk of life. There is also a huge apathy crew who sit on the fence and won’t commit to any cause be that climate change, Black Lives Matter or Autistic acceptance. These people can be even more dangerous than the bad guys! There are do-gooders too. Now these people look like they’re being good guys, but usually they blindly follow a cause without understanding it. They attach themselves to a group like a Remora to a Dugong because it makes them look good, because the cause is popular, because it gives them a sense of belonging. But they are slow to learn about the issues they claim to represent and quick to demonize people who challenge their beliefs. In time they’ll get bored and move on to the next new cause.
The incredible Dugong my husband and I encountered diving in Sharm el Sheikh.
So I finally figured out, my tribe are whichever people love and respect me and show me the same honesty, support and understanding as I show them. My tribe are the people who make the effort to learn how my brain works and who accept my quirks and rituals. My tribe give me feedback kindly when I mess up and they show me forgiveness because they know I try hard to learn from my mistakes. My tribe know I can be brittle and over sensitive from a lifetime of being misunderstood and judged, so they try their best to understand me just like I try to understand them.
Discovering I am Autistic was life changing and overwhelmingly positive. I adore working as an Autism trainer teaching other parents, carers, teachers and employers how to best support the Autistic people in their lives. I love writing my blog and sharing my experiences of living with Autism. But I’m just one person. Talking about my life. My experiences. My tragedy and trauma. My happiness and joy. I don’t speak on behalf of all Autistic people because I don’t walk in their shoes. I have no right to claim Autism is a Superpower, neither can I say it affects all of us as a disability. There are Autistic people for whom learning difficulties or co-morbid physical conditions are extremely disabling. In my lived experience, it is my mental health conditions that disable me, that and the judgement of others.
I hope that some people can relate to my writing, that it teaches them something about Autism. But my stories are mine, unique to me. Because we are ALL unique and belonging to any type of group does NOT mean we have to conform religiously to the language and beliefs of that group as if it were a cult!
All birds but so diverse in their abilities, their look, the way they sound, what they eat…. Photos taken in various locations, in the wild and captivity.
There is comfort and security and learning in mixing with others ‘like you’ but when I look at my tribe, they are truly diverse in age, race, sexuality and neurotype. What unites us is a common set of values, a genuine desire to be kind, to look out for each other, to understand each other and to forgive each other when needed.
What I’m trying to say is, you do you and I’ll do me. Let’s all make the effort to be more tolerant and kind. With empathy and making the effort to learn about others’ challenges we won’t need to hide behind labels. I’m Autistic. I’m Bipolar 2. I’m OCD and Anxiety and PTSD. I’m a wife, a mum, a friend. Most of all I’m ME.
Wanna be in my tribe?? 😉
Lizzy Van Tromp
8th September 2020