Being openly autistic can be a nightmare for a number of reasons, but there are few phrases that annoy me more than…
“Don’t let your autism define you.”
This phrase cuts deep into the core of who I am, and fundamentally undermines me. When a person says this to me, it is clear that they have not taken the time to understand the lives of autistic people.
Autism is more than a diagnosis, and it is not a mental health problem that I suffer from. Yes, there are traits of my diagnosis that can be very disabling, but as we know from the social model of disability, this is largely because the world is not designed for me and my fellow autistics.
For me, and all other autistic people, autism is an inextricable part of our identity. Autism is an integral part of me. It defines my neurology and subsequently, it defines every aspect of my existence. Without being autistic, I would not be the person that you know. Every aspect of who i am is dictated by my autistic neurology.
Even as I write this, I can imagine the cries of despair from the martyr parents. How dare I suggest that autism is anything more than a tragedy? Should I not be capitalising on my struggles? Should I be lamenting my weakness for more Instagram followers? Simply put, there are those who would rather autism was seen as an appendage, a parasite that hangs on to me, waiting for quack curists to come along and bleach the different out of me.
These people anger me in a way that I cannot even begin to describe. I would even go as far as to say that it is the aforementioned despair and cure talk that contribute to the disturbingly high suicide rate amongst autistic people. When they see autism, they see something that needs to be eradicated.
When I see autism, I see beauty. I see a rich culture of fierce advocates who want nothing more than to be accepted by a society that seeks to alienate them. I see the communities of autistic people, finally making each other feel heard and loved. I see people with remarkable insights and talents that contribute positively to the world. When I speak of autism defining me, this is the definition to which I am alluding.
I do not think, communicate, or in any way behave like the neurotypical population. I have my own language, the universe is a different place viewed through the lens of my autistic mind.
In my life there has been a single immutable constant that has always been with me; I am autistic. I was autistic on the day of my birth, and I will be autistic on the day that I die. Autism is not something I carry with me. I am autism, and autism is me. We are one and the same, a beautiful symbiosis seeking to change the world into a more caring and accepting place.
Where others see suffering, I see a community and culture of autistic people who will fight endlessly for the justice that so far has mostly evaded us. That community is the face of autism, and THAT is why it upsets me so deeply when you tell me not to let my autism define me.
He has extensive experience of educational consultancy with both organisations and individuals.
He runs Emergent Divergence which can be found on multiple social media platforms, and is a regular educator and presenter on Aucademy.
He is co-author of the "Creating Autistic Suffering" series, found on his website emergentdivergence.com, and is also a published poet.
To make contact about his consultancy and mentoring services, visit http://www.dghneurodivergentconsultancy.co.uk
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- Integrating autistic culture into the world: The cultural model of autism - June 1, 2021
16 Responses
“A beautiful symbiosis”
Yes, you and I are in Accord
Preach it mate <3
Fantastic David. Puts into words the thoughts of thousands if not millions of us all over the world.
Bravo!
Thank you for writing what I have such a hard time explaining to the people in my life. I am quite grounded and happily autistic.
I find ‘don’t let autism define you’ to be as insulting as ‘cure’ talk. Would NT people want to be cured of their neurology?
I literally had an argument about this with someone last night. I identify autistic. My son is formally diagnosed. This person did not want an autism diagnosis defining their kid. And I voiced that most autistic adults DO. I even lightly pulled one of the autistic groups I’m in and everyone agreed with you and me. The change that needs to happen is about acceptance, not definition.
I completely agree with you – especially about autism defining who you are, and who you will be in this life.. but people who love you and care about you will still grieve that you will/do suffer more because of autism. That you will not get to experience the joys of genuine bodily and social harmony and connection, natural feelings of belonging with your community or school friends – that social and environmental ‘just fitting’ isnt part of the experience. I think they just genuinely are sad that you miss out on these things and will/do have a harder life because of it.
Having meltdowns is painful and frightening – sensory overload is disorienting/awful etc.., having a disorder that is a ‘whole body’ disorder means struggling with gut and food issues, the mental health issues, rejections etc.. The world isnt ‘made’ for any minority – it wouldnt make sense to orient it for neurodivergent when neurotypical is the norm. Of course people are going to see the suffering aspect when they get to experience so much of the joys of their side of the fence (the neurotypical side), but we get bring balance to that by showing them the joys that come with autism and that standing up for equality for all human beings is a worthwhile thing. But I think we should allow compassion for being autistic, and the hardship/suffering that does come with it/because of it (which does not make it entirely bad of course).
When my daughter was diagnosed, I didn’t grieve. My daughter suffers less than most children. She knows unadulterated joy many times every day.
You see, her parents are both autistic, too. So are her sitters. Our friends have autistic children. In her world, she is not some unloved outcast. She’s not weird. We don’t stay out until she gets overwhelmed. We look for signs and transition.
My child experiences Harmony. She is a beautiful symphony, and as her mother, I am the conductor. I pay attention to the details and adjust them to keep things in perfect pitch. Meltdowns almost never happen for this reason, but there is always racous laughter. My child will grow up without worrying if you or anyone else grieves for her, because her parents do not ever pull from their bounteous fields a single fuck to invest in your judgements or pity.
Our relationships are full of light, warmth, nurture, fire, and sunshine. We get to the heart of things without the social plastic that keeps you from ever making full contact.
Just because you do not see this, doesn’t mean that isn’t how it can be. Trust me, there’s so much your eyes will never see. We see so much more. That’s painful sometimes, but it’s also never something we would give up because who forfeits a gift?
Why you came here to say this is beyond me.
Raising my granddaughter, who is 6, non verbal, ASD, and severe SPD. Because of you, and people like you in my life from the beginning, I am raising.. Monica.. exactly who she is. A wonderful, awesome, roller skater, bike rider, lover of Taylor Swift, the Fall OUt Boys, Ed Sheeran and Sons of Anarchy. She loves Star Wars. She love to go to movie theatres. She comes with me to the grocery stores and is free to flap, yelp, and fall in front of carts for attention. Because she is allowed to do all this. SHE THRIVES. People see her energy, and smiles, and smiles back at her, with also giving me a loving smile. She is treated with love, and I speak to her as I would speak to any one. I taught her today, how I use my phone/Pandora radio using “Hey Pandora, Play Ac/Dc’s Back in Black” and when it came on she clapped and yelped. Autism does define her in ways that honor who she is. I wouldn’t give her ABA therapy to beat her into being normal if it was free. But it is people like you, and others that taught me that BEFORE I even knew what to do. Thank you!
I have to admit, in my case I’m at an impasse here. I don’t deny that autism has played a critical role in making me who I am, and yet I feel like it would be foolish to conclude it’s the most important part of who I am or that my other characteristics are of lesser importance. It leaves no room for others to consider my other qualities- my personality, my beliefs, my ambitions, and so on- save through the lens of autism.
I guess I can empathize with that phrase, in the sense that I don’t want any one of my traits defining me to the exclusion of all the others. But at the same time it’s equally silly to pretend it doesn’t define me to at least some extent. So where does that leave me, then?
Absolutely beautifully put. Thank you. *autistic fist bump*
I just had a friend tell me she likes ME, but is tired of “autism Jane”. She said, “You let your autism DEFINE you. YOU don’t HAVE autism. Your autism HAS YOU.” This was obviously supposed to be an insult, but…it’s just not?
Autism is such an integral part of who I am and how I experience the world. If you managed to separate my autism from me, you would not have me. I don’t think we’re going to be friends anymore, since she wants me, but doesn’t want “autism Jane”.
Perhaps she’ll let me know when she finds her?