Yes, my autism does define me.2 min read

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.

David Gray-Hammond
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9 Comments

  1. “A beau­tiful sym­biosis”
    Yes, you and I are in Accord

  2. Preach it mate <3

  3. Fantastic David. Puts into words the thoughts of thou­sands if not mil­lions of us all over the world.
    Bravo!

  4. 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.

  5. 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?

  6. 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.

  7. 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).

    1. 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.

  8. 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!

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