Why Is It So Difficult to Understand Autism?

“For as soon as an unexpected fact appears, we try to fit it in the framework of the common places of acquired knowledge and we are indignant that anyone should dare experiment further.”

– Paramhansa Yogananda, Autobiography of a Yogi

Yogananda’s quote regards the human approach to science and the nature of the universe, but when I apply it to the neurotypical understanding of autism, it seems to fit just right.

Autism is often unexpected by families. It is also commonly explained as a deficiency that needs lots of therapy and remediation, rather than a neutral neurological processing difference compared to the neurotypical processing. Our introduction to autism is usually one cloaked in words like “reg flags”, “symptoms”, and “disorders”. Because of this negative introduction, unwitting parents and caregivers are on defense for anything related autism.

Parents especially fear autism, yet understand their child is also perfect the way they are. Often they’re perplexed because they note the growth, intelligence and creativity of a child, but observed they’re markedly different than typical peers. This duality of understanding is the source of so much anguish and frustration. It doesn’t need to be this way.

This may also be due not just to negative explanations of autism, but also because people conflate autism with a form of intellectual disability. These two things are not mutual, though autistic people (and neurotypical people) can also have intellectual disabilities.

Here’s the entire quote from Yogananda, and just for fun, let’s pretend that this it is about the understanding of neurological processing differences:

“The truths- those surprising, amazing, unforeseen truths which our descendants will discover are even now around us, staring us in the eyes, so to speak. And yet we do not see them. But it is not enough to say we do not see them. We do not wish to see them. For as soon as an unexpected fact appears, we try to fit it in the framework of the common places of acquired knowledge and we are indignant that anyone should dare experiment further.”

– Paramhansa Yogananda, from Autobiography of a Yogi

If an autistic person’s behavior does not make sense to you please consider doing the following:

  1. Observe the behavior without judgment. This will be nearly impossible, so here’s an easier way: every time you witness the behavior, check your thoughts to see when you are deeming something socially appropriate or inappropriate.  Observe how you feel when you witness this. Consider your emotions as you observe. Are you uncomfortable? Angry? Embarrassed? Curious?

Once you’ve understood through which lens you are witnessing the behavior, be aware this is impacting your ability to “see” the behavior for what it is.

Behavior is a form of communication and for many autistic people, their bodies are important means to communicate when they are unable to verbally articulate their needs. 

  1. Ask the autistic person when they’re in a rested state what their behavior means. Often, they will tell you. If you interrupt to tell them why it is bad/wrong/unacceptable, remember that they will likely stop telling you in the future or find deep shame in trying to meet their own needs. 

If the person is too young to explain or unable to articulate what/why, consider searching the web for autistic voices who can explain things. Do not ask when they’re overstimulated, as answering may be impossible in that moment.

A group that substantially changed my understanding of autism was the closed Facebook Group “Autism Inclusivity”. This is an educational group where parents and caregivers of autistic kids can ask autistic adults about behaviors and intentions.

Caution: read the rules and observe first. Learn about etiquette in safe spaces for autistic people. Ableism and sympathy for neurotypical people will not be present here; this is because most other every place in the world favors the neurotypical. Go there to learn and be amazed. Also, on my Instagram page, I repost daily tips from #actuallyautistic people and neurodiversity affirming clinicians and researchers. My handle is @sensationalstims.

If you want to understand autism, learn from autistic people!

3. Do you understand sensory differences? I didn’t. I am embarrassed to admit this, but I thought we all kind of had the same sensory experiences. Autistic people usually have heightened senses that, unless supported, are often overwhelming and can cause anxiety, fatigue, burnout, and meltdowns. Learn what your child’s sensory needs are.

I urge us to all remember how we were initially instructed about autism: we were trained to believe autism is a deficiency that needs adjustment, instead of a processing difference that needs support, especially for those of us struggling to understand an autistic family member, friend, student, or client.

Fill out this form to get a free resource to understand sensory differences and stimming!

Or buy my book The Case of Sensational Stims to learn what stimming is and why it’s so important. Available online on Amazon, Barnes and Noble and Wal-Mart. 

Thank you for being here. Getting curious is the first step to creating an inclusive, safe world for everyone, especially autistic people!

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