Beep, beep! Stay in your lane! Beep, beep!
An Autistic Ally is many things, but one thing they are not, is Autistic.
What an Ally is, is someone who is prepared to listen, learn and act upon direction from Autistic people.
For example, if a group of Autistic People says to a Neurotypical person, please don’t give money to Autism Speaks, they do not speak for Autistic people and actually cause harm with their negative narrative of Autism, then an Autistic Ally would not give money to Autism Speaks.
(PS. Please don’t give money to Autism Speaks!)
So what can you do that will make you an Autistic Ally? Have a list:
1. Scale back your ego.
Autism is about the Autistic person, it’s NOT ABOUT YOU. It doesn’t matter if you are Mum, Dad, a Professional, a Friend, or the cat that lives next door, Autism is about the Autistic person.
Also, you will, if you frequent mixed NT/ND Social Media groups, you will see a lot of anger, resentment and sometimes hate, towards Neurotypicals. Please take not. THIS IS NOT DIRECTED AT YOU PERSONALLY. As a Neurotypical person, you are representative of the society which has abused us our whole lives. I’ve never come across an Autistic person that hates all Neurotypicals. Most of us have wonderful Neurotypical people in our lives. Understand that as a Community, we are hurting and continue to be hurt every day. That will continue until our differences are accepted and appreciated by society at large.
2. Be supportive
Don’t take over, don’t be condescending. Ask your Autistic what you can do for them, don’t assume and never, ever force an issue.
Some Autistic people positively and happily accept who they are, some are on the journey there, some basically hate themselves. Whatever their mindset, follow the Autistic person’s lead.
3. Defend, but don’t offend
If you see an Autistic person being talked over, or shouted down, or overwhelmed, or melting down, then step in. Try to draw a line between the Autistic person and those around them. Ask everyone to step back (metaphorically or physically) and give them some space (online especially you tend to find if an Autistic person is brave enough to venture an opinion on Autism, they usually get pounced by groups of do-gooding Neurotypicals). If you are going to White Knight into a situation, check with the Autistic person beforehand, that that is what they want you to do.
4. Ask, don’t answer
If you are unsure, ask a question. Most Autistic people do not mind answering questions about their traits, as long as you are polite about it. If you sense that the person is withdrawing or their body language tightens up, that usually means they are overwhelmed and uncomfortable.
Also, ask us before touching us, PLEASE! We aren’t pets, many of us don’t like to be patted, stroked, hand-held or otherwise. Some of us have huge sensory reactions to touch that can trigger pain and/or meltdowns (I feel physical pain when touched)
5. Know your stuff
It’s a bit pointless calling yourself an Autistic Ally if you don’t know at least the basics of Autism. Learn a little history (This great Steve Silberman video will give you a quick overview), find out about traits, triggers, Meltdowns and Shutdowns, learn about co-morbid conditions, make some Autistic friends and ask them about their experiences.
6. Be prepared
Being an Autistic Ally takes a strong stomach. The Neurotypical world was not built with Autistic people in mind, so to one degree or another, all Autistics are scarred. From the undiagnosed victims of unintentional and/or intentional child abuse, to the diagnosed victims of child abuse, to those that have suffered prejudice and bullying, to those forced into Mental Institutions.
You will learn about Applied Behaviour Analysis (ABA) based therapies, Bleaching, Clicker Training, Coke/Caffeine Therapy, electro-shock therapy, anti-Vaxxers, cure culture and a whole other host of ‘treatments and cures’ that range from disgusting, to bizarre, to shocking and usually all three.
Autistic people, whether they are aware or not, are victims of an oppressive system. We don’t fit in, yet every day are forced to fit in. We are abuse victims, we sometimes self harm, we sometimes attempt to kill ourselves. Treat us carefully.
7. Watch us
Some Autistic people are like chameleons, we have an uncanny knack of blending not only into our surroundings, but also into Society. We call this Masking. It’s a skill, one that we train ourselves in subconsciously and consciously to do since birth. Every day we do this, every moment in public, the mask goes on like a second layer of skin that protects us from the NT world and also, conversely protects NTs from us, so that we don’t act differently to you, so that we don’t make you feel uncomfortable. We conform to the demands that society expects and it is utterly exhausting. Many of us suffer from chronic fatigue (Not to be confused with Chronic Fatigue Syndrome) and our partners wonder why we are tired and cranky all the time.
Many Autistics have Sensory Processing Disorder. This is a whole blog (or maybe twelve) in itself, but briefly, Sensory processing disorder is an adverse reaction to sensory overstimuli. That can be any, some, or all of the senses. I personally am adversely sensitive to a wide range of things including (but not exhaustive) certain sounds (children screaming/sirens), smells (Tuna/vomit), sights (bright lights/blue lights) and most of all touch (Don’t touch me, it burns me). Reactions to these stimuli can range from exhaustion, to meltdown.
8. Say my name
Please be aware that the Autistic Community has generally and collectively decided against the use of Functioning labels and for the use of Identity first language.
We no longer recognise the terms High Functioning and Low Functioning. Not only does high and low carry negative connotations, the terms themselves are simply false. One who is ‘Low Functioning’ will have skills equal or superior to one deemed ‘High Functioning’ and vice-versa. They are not useful categories. When was the last time a Neurotypical who struggles with something diagnosed as Low Functioning?
We, as a Community wish to be spoken of with Identity First Language. I am not a person with Autism, I am Autistic. I do not ‘have’ Autism, I am Autistic. I can speak of Autistic people, but i cannot speak of people who have Autism.
Autism is not a disease, it is us. we do not ‘have’ something. I spoke to someone the other day that mentioned she did not want her child defined by Autism. Well hey, guess what, Autism does define us. We view the world through Autistic eyes and with our Autistic brains.
For more information on this, please visit my articles on Autistic ‘Functioning Labels’ and ‘Identity First Language‘
9. Look up not down
Positivity. Be positive about Autism everywhere you go.
If someone calls Autism a burden, refute it. I consider myself privileged to be able to look through my eyes and see a world full of beautiful patterns, literally to be able to see Maths at work and the beauty that it can form. Yes, I struggle. Yes i find it incredibly difficult. But Autism isn’t the reason, society and what it demands from us is the reason.
The narrative of Autism is so negative, from the medical profession to the Media. Refute this everywhere you go. We do not need inspiration porn like being invited to the Prom, or becoming coach of a basketball team for a day.
Also, the Media and a lot of Autism charities seem to forget that Autistic children turn into Autistic Adults. Just to let you know that Autism doesn’t stop at 18, we just get better at hiding it from you, which usually kills us at an early age. Which is fun. Not.
10. Everyone is a little Autistic
NO. THEY ARE NOT. EVERYONE IS NOT ON THE SPECTRUM SOMEWHERE. You are either Autistic or you are not. Seriously. Drop that sentence in a room full of Autistic Advocates and see if you get out alive.
Good luck and most of all thank you.