There is a point of contention in the autism community, not to be confused with the autistic community: awareness versus acceptance. Which of these do autistic individuals truly need?
Being aware of something means drawing your attention to it. In the medical community, awareness is associated with action. Breast Cancer Awareness aims to find a cure for breast cancer. Suicide Awareness strives to bring an end to suicide. Diabetes Awareness hopes to develop a cure for diabetes.
Autism Awareness is associated with the desire to cure autism. This is problematic for two reasons. First, the cure for autism does not and never will exist. Second, even if it did, a large portion of autistics would not be interested in it.
Autism is not a disease. Autism is essentially a less-common brain type. It would be impossible to cure individuals of autism without changing key parts of who they are.
I spoke with several autistic individuals and parents of autistic children. The following is what they had to say:
I can’t stop being me, and wouldn’t want to stop being me. The suggestion that we would need a cure hurts because that’s what it seems to imply- that we shouldn’t be who we are.
—Brandi, homeschooling parent
I wish it were easier for my daughter to pick out clothes that don’t cause her distress. I wish finding food that she enjoys were a more simple task. I wish she didn’t get easily overwhelmed by change and overstimulating environments. But, I love her beautiful mind. I love that she is truthful and analytical and passionate… would I like life to be easier for her? Absolutely. Would I take away her struggles at the risk of destroying her strengths? Absolutely not.
— Beatrice, Early childhood professional
I think this is based in something I heard somewhere, but if you made my autism go away, you’d make me go away.
-Emily Volz, rabbinical student and writer
When a brilliant writer, painter, or dancer is discovered, we don’t judge them by their lack of interest in economics. Autistic minds are selectively brilliant and, rather than focusing on their weaknesses, we should be drawing out their talents.
— Wendy Katz, 39, VA, autistic blogger and social worker
But what about people with “low functioning” autism?
Many people believe that while those with “mild” autism might not need a cure, those with more “severe” cases do. One problem with this line of thinking is that a person’s place on the autism spectrum is not linear.
A child entering therapy for autism might be considered “low functioning.” Perhaps they have yet to toilet train at the age of five, have limited conversation skills, and are not progressing at the same rate as their peers academically.
After receiving occupational and speech therapy, they may make huge strides in these areas. It is not that the child is incapable of learning; the child simply needs to be understood and taught in alternative ways. Once they have acquired new skills, they gain a new function label: they move from the perceived “severe” end of the spectrum to the “mild” end.
But, in this scenario, the autism did not change. The acceptance and teaching methods did.
This tells us that if we were to somehow “cure” those with more [perceived] “severe” cases of autism, we would potentially be robbing them of the life they could build for themselves as an autistic with proper accommodations. We would be needlessly altering a core piece of their identity.
The second and perhaps more important problem with seeking a cure for autism is that even those considered “low functioning” are valuable human beings exactly as they are. They do not need to be improved upon in order to be worthy and autonomous individuals.
I’m low-functioning. My autism is “severe.” My house is always a mess, my husband picks up a lot of my slack, and I have a hard time going out in public due to sensory issues. I’m a great mother, but I have help with childcare, too.
There are times when I can’t speak, and if I do, what comes out is gibberish. My executive function is so low that sometimes the steps to complete the most basic of tasks, like paying a bill or sending a text, are overwhelming beyond my capacity.
Yet, I run one of the most prolific non-profit disability websites in the world. In some ways, the rest of the world is low-functioning compared to me. And that’s okay. It should be okay that I am really good at a few things and terrible at everything else.
But, given room to be who I am, there are many people dependent on me. Inter-dependence is not inherently negative. It should be a point towards which we all strive, to contribute according to our ability levels and strengths. I use my strengths to bolster others who lack those specific skills, just like others help me in the same way.
The end product is better than what any of us could’ve created on our own.
— Terra Vance, founder of The Aspergian
My daughter being nonspeaking and aggressive at times during meltdowns is hard on both of us, but she is also her own unique person, and I literally couldn’t picture her without autism. If they developed a cure for Autism I would probably immediately say no. So many of her autistic traits are what I love so much. I wouldn’t want to lose her energy or zeal for life… I feel so strongly about my baby. She’s the best.
— Amelia, mother of autistic daughter
My autistic children are exactly who and how I could ever want them to be. It is as the allistic culture crashes into them, and they into it, where the gap lies that absolutely needs extra consideration, accommodation, & modification so that these amazing beings get a chance to contribute to the world at large.
– Jen Bluhm, ND mother of 3, Artist & Advocate
My son is nonspeaking and considered “severe.” I still wouldn’t cure his autism. I would not be able to separate what makes his life difficult at times from what helps mold his personality. He is a wonderful person whom I would never change.
— Matthew, Customer Service Professional
Autism is neither all good nor all bad. Like most things in life, it falls into the gray. Autistic individuals face unique challenges and sometimes require more help with daily tasks than their neurotypical counterparts do, but they also often have talents and strengths as a direct result of their neurodiversity.
These differences give us room to learn from each other, and gain wisdom from the experiences of those who are not like ourselves. These variances allow us to each demonstrate our unique strengths. They create the opportunity for us to turn to each other in times of need.
Autism does not need a cure because autistics are not broken neurotypicals. They are not improperly designed humans. Neurodivergent individuals are simply built differently. They are a break in the pattern of what is familiar and expected– and isn’t that wonderful?
So, yes, be aware of the Autistic Community. But please be aware of more than our existence. Be aware of our needs. Be aware of our strengths. Be willing to accept us exactly as we are.