Why My Family Refuses to Celebrate Autism Awareness Day

Why My Family Refuses to Celebrate Autism Awareness Day April 3, 2019
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Yesterday the world celebrated “World Autism Awareness Day.” People around the world shared their stories and journies either raising a child with autism or living as an autistic person. In my home, we made no mention of the day nor paid attention to the news surrounding the day. For my family, there is no such thing as autism awareness. Instead, we live in a world of autism acceptance.

As a mother of an autistic child, I have never liked the media obsession with bringing awareness to the neurological disorder. Generally, I’ve found the exposure to be demeaning, discriminatory, and unflattering to anyone that has autism.

Instead of focusing on awareness in our lives,  my husband and I chose to channel our energy to accepting our child with autism. When I think of the word ‘awareness,’ immediately my mind goes into a dark place. If I need to bring awareness to an issue, there is a general assumption that the subject that I’m speaking about is negative.

Then I consider the fact that many of the organizations that push “awareness” days are non-profits that aim to help that specific community. In the world of Autism, there is no more prominent organization than Autism Speaks. Autism Speaks claims to be the leader in building awareness, education and providing resources to families.

However, Autism Speaks has a long history of promoting autism in a very negative way. Videos and advertising made by the non-profit have painted autism as a monster. When the organization launched in 2005, its mission was to find a cure for autism.

The ‘cure culture’ grew out of the advertising, media, and print that Autism Speaks created. Today Autism Speaks removed “cure” from their mission. Now the organization claims to be about providing resources for children with autism.

Unfortunately, the damage of their early campaigns is still a huge problem within the autism community. Even though the organization stopped promoting autism as a horrible disorder, many parents continue to view autism as the worst possible diagnosis.

Sadly, the ‘cure culture’ created by Autism Speaks has led many parents to attempt dangerous biomedical treatments on their children. Organizations around the world promote dangerous cures like hyperbaric oxygen, bleach, turpentine, supplements, chelation therapy, and stem cell therapy to name a few.

As a result, young children become guinea pigs for their parent’s obsessive need to rid their child of their autism. The biomedical treatments are pushed by naturopaths, homeopaths, and quacks that wrongly believe autism is a disorder that derives from the gut.

My heart aches each day because there are parents around the world abusing their children because they cannot accept their child’s diagnosis. Autism Speaks created a world where parents became so obsessed with a cure that they forgot how to accept their child.

Therefore, in my home, we practice full acceptance of my son. Yes, autism presents unique challenges for a family. Autism is a social and communication disorder with rigid and inflexible thinking along with repetitive behaviors. My child is very black and white. He needs structure, consistency, guidance, and patience by caregivers to get through his day.

We focus on providing my son with opportunities to become his best self. For years, we have worked with therapists to improve his fine and gross motor skills. He learns about socialization through social stories and speech therapy. Instead of focusing on his limitations, we praise his strengths and help build his confidence.

The word autism doesn’t get used very much in our home. In fact, the only time we speak about autism is with my child’s providers and teachers. Otherwise, we refer to our son by his first name. We allow him to be the beautiful and loving child he is and manage all of his behaviors through therapy.

Sure, autism presents challenges. But I refuse to make my son feel like his differences are a burden on our family. There is nothing burdensome about autism. I believe something can only be a burden unless you make it one. Therefore, by accepting his autism, we take him for every single part of his personality.

I accept that he only eats a few foods. On most days, I know that we will talk and play with dinosaurs. He enjoys watching the same shows over and over. His vocabulary is extensive and floors most people.

Despite the terrible reputation, autism gets about empathy and affection; my son is a loving and tender boy. There is nothing more than he loves than cuddling with me and watching his favorite shows.

While the rest of the world is working on awareness, I suggest we start to think about acceptance. Autism is not evil nor a horrible disorder. Children with autism need love, guidance, and acceptance so they can develop a strong sense of self. The last thing we need our children to hear is that their ‘disorder’ is a hindrance in our lives.

This month I encourage all people to stop believing we need to cure or fix autism. Autism is not a disease. Adults with autism can work and have amazing lives. Yes, some adults will need on-going support, but that does not minimize their value or worth as a human.

Please consider changing your thought process. Next year let’s all work toward a day of Autism Acceptance rather than Autism Awareness.

 

*Katie Joy is a columnist and hosts Without A Crystal Ball on Patheos Non-Religious Channel. She writes articles on parenting, disability advocacy, debunking pseudoscience, atheism, and crimes against women and children.

She co-hosts the YouTube show, “The Smoking Nun,” with Kyle Curtis on The Non-Sequitur Channel. The show airs weekly and tackles pseudoscience, current events, and crime stories.

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What Are Your Thoughts?leave a comment
  • Brian Curtis

    Autism Speaks has a generally poor reputation among most people with autism, I find.

  • persephone

    Autism Speaks was founded by a couple whose grandson is autistic. He didn’t match up to their idea of the perfect grandchild. They treated him as though he was mentally disabled, despite the fact that he taught himself Hebrew. Seriously. Hebrew. There are not autists in management anywhere–unfortunately, a common problem with these organizations.

  • persephone

    I hate that BS that autists don’t have empathy. They often have so much, but the world is too much for their hypersensitivities. I still have moments, despite being well past the half century mark, where I’ll have a freakout and can’t deal with something. Sometimes, it’s a matter of just leaving the room. Other times, I have been known to cut myself out of clothes that are annoying me (I don’t wear expensive clothes).

  • Michael Neville

    I heard recently that April 2 (which happens to be my birthday) was Autism Awareness Day. Being on the spectrum I was happy to hear that, until I found out that the loathsome Autism Speaks was running the event. So instead the daughter and I just celebrated my birthday and neither of us mentioned autism.

  • Autism is just another way of being.

    The “problems” happen when you try to force an Autistic person to, you know, not be Autistic.

  • AnonCar

    I think that was one of the things that bothered me reading “The Curious Case of the Dog in the Night”. It was recommended to me by someone who works for a local treatment and resource organization. In general it was a good look at a world perceived by someone who experiences rigid, sharply defined thought processes and sensory perception issues. What I didn’t like was that the main character was portrayed as being incredibly selfish, self-centered. I may not know very many people on the spectrum, but I can’t believe that that is a universal characteristic.

  • Catherine Flusche-Gillikin

    I feel like autism is just a new name for something that’s always existed. There aren’t suddenly more cases, it’s just new diagnoses for people who 50+ years ago would have simply been classified as “different”. ADD and ADHD are the same; it’s not magically more prevalent, we just have diagnoses and better ways to “treat” (as in literally how we interact with) these folks (rather than just labeling them “delinquent”).

    I’m 99% sure that if my brother and I were toddlers today he would definitely and I’d probably get diagnosed as being on the autistic spectrum (very mild cases, but still). We both have our “quirks”, but really, there’s nothing to cure. We’ve learned to adapt to the world.

    There really isn’t such a thing as being “normal”.

  • Grant Martin

    As the Dad of a child with Autism I couldn’t agree with you more. I will say that the “awareness” piece here in NL is a bit different, it doesn’t have the negative connotations that you might be finding.

    The rest of your article was spot on exactly how we try to live our lives. She’s going to be 9 in May and by Sept 2019 we won’t have an ABA therapist working with her. To be truthful we are wondering how we will manage as there is no after school program that has space to take her in and we have no one else in our family that is able to stay with her while my wife and I work.

    We’ll figure it out though, we always do, and that is the thing none of us can forget. It’s never hopeless, things will work out. Often in the most surprising ways