An Autistic Perspective on Autism Awareness

Catie Byrne
Staff Writer

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PC: Catie Byrne

 

April 2 marked World Autism Awareness Day and throughout the month the topic of raising awareness for the developmental disability remains relevant to activists and autistic people.

While many activists and organizations for autism are highlighted during this month, autistic people often feel left out the conversation. Dan Smith, however, wants to change that.

“I am autistic and I hate most advocates and organizations for autism because they’re not run by autistic people. They try to speak for us but they don’t know what it’s like to have autism, and I think the resulting advocacy is mostly very bad and actively harms autistic people.”

One organization Smith expressed anger towards is Autism Speaks. “They [Autism Speaks] push Applied Behavioral Analysis to try to cure autism. ABA ruins people’s lives. It’s abusive and harmful to autistic people; it tries to mold our behavior into something acceptable to allistic [non-autistic] people through punishing autistic people for exhibiting autistic traits,” said Smith.

While, according to disabilityscoop.com, Autism Speaks removed language which explicitly advocates for a cure for autism in their mission statement in 2016. Yet, language which promoting “treatment” for autism remains on their website, autismspeaks.org. In the ABA section of autismspeaks.org, the organization states that “ABA is widely recognized as a safe and effective treatment for autism.”

“That’s exactly the problem,” says Smith, “autistic people don’t need treatment. The whole discourse of language, whole institutions and therapies that exist with this goal are doing violence to autistic people.”

When asked what he believes is a beneficial approach to helping autistic people, Smith said, “access to resources. A lot of institutions are difficult for autistic people to navigate and this can be very stressful. There is a focus in a lot of autism activism on how to help change autistic people, how to make our behavior fit more smoothly into society, and that’s not what we need. I don’t want some random person with a guilt-complex for the ‘poor autistics’ telling me how I should change my life to make them more comfortable. Unfortunately, autistic voices and concerns in activism spaces are heavily shut down, because you know, we speak against the abusive therapies and treatments that are made mainstream by organizations that profit off our suffering.”

On the topic of autism awareness, Smith similarly suggests an approach which centers around autistic voices.

“I’m autistic and I’m going to speak for myself about being autistic. We [autistic people] need more organizations run by and for autistic people. I don’t trust allistics in charge of autism organizations or in activism because they’ve already done enough damage to autistic people. If you’re going to listen to anyone about what it’s like to be autistic and what you should know about autism, it should be actually autistic people,” said Smith.

Smith also believes that rather than just being aware of autism itself, it would benefit autistic people for non-autistic people to be more aware of the way they act when interacting with autistic people.

“People forget autistic people are actually people. Autism isn’t some scary boogeyman that people need to scare away, and it’s not something to separate from personhood. If you’re telling me you want ‘to help me with my autism’, you’re telling me you want to help me be less of myself. I want allistic people to be aware that treating every autistic person like a child or a charity case is not helping us. I am autistic and I need you to be aware that you are no better than me, because you’re not.”



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2 replies

  1. I respect the writer’s opinion and I am aware of this argument. What people who are not familiar with autism do not always realize is that autism is a spectrum. Many children with autism are like my own. They are non-verbal, they have severe obsessive compulsive disorder and they will never, ever be independent. That is a far cry from people like the writer who appears to be extremely high functioning. I am happy for him and his parents.

    But for those who have more severe autism, ABA and other treatments are actually needed. Children on this end of the spectrum, who are many need intense intervention to maximize their potential. I can tell you that it makes a world of difference to have a completely non-verbal child gain some language when they have none. ABA is not the only therapy and it is not the only answer. But, ABA has helped many.

    The medical community has thrown a wide net to describe autism. In the end, eventually we will find that autism which is defined by a broad group of behaviors will be cause by many different genetic and other reasons. Autism is not one condition.

    So, I fully support the need for research and, yes, treatment for certain people on the autism spectrum. The vast majority of those with autism are not like the autistic doctor on tv, the quirky nerd or someone who can function day to day but has some personality behaviors.

    Like

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