Re-evaluating everything you think you know about autism

Do you have a child who is neurodivergent or autistic?

Neurodivergence simply means, your brain is wired differently than what is considered typical or “normal” from the rest of the population. This includes the way your brain processes information, the way you think, learn and interpret the world.

The term “neurotypical” is a term that’s used to describe people with typical neurological development or functioning. In other words, it’s not used to describe someone who has neurological differences.

Being a parent of a neurodivergent child means that there is a high likelihood that you also are neurodivergent (as it’s known to be genetically inheritable.)

Similarly, if you are a parent of an autistic child, it’s possible that you are also autistic.

You may be thinking “but wouldn’t I have been diagnosed if I was autistic? And surely I would know if I was autistic, right?”

The truth is, so many people have gone their entire lives or well into adulthood before receiving an autism diagnosis. Many autistic adults report feeling like the weight of the world has been lifted off of them when they receive their autism diagnosis later in life.

They have gone their whole life feeling like they’re on a completely different wavelength than the rest of humanity, struggling daily in a neurotypical world. Receiving an autism diagnosis turns the feeling of being a “damaged, disabled person” into “I’m a perfectly good autistic person.”

Many autistic people have never been diagnosed. This is especially true when it comes to women because most girls are overlooked and not diagnosed as kids. There’s many reasons for this, but one being that girls are more adept at masking their autistic traits.

In this article, Carol Povey, director of the National Autistic Society’s Centre for Autism states, “Recent research suggests that the number of males and females on the autism spectrum is far more equal than previously thought and diagnostic statistics suggest. The problem is that professionals often don’t understand the different ways autism can manifest in women and girls, with many going through their lives without a diagnosis and an understanding of why they feel different.”

There’s been some debate about why girls and women may mask autistic traits more than boys and men do. This 2015 study suggests that autistic girls and women may be more inclined to develop friendships than autistic boys and men. Girls often mask (such as scripting or imagining/ practicing future conversations) which results in superficial social competence.

What’s Masking?

Autistic masking is when someone suppresses their autistic traits and mimics certain behaviors in order to appear more neurotypical.

This can include things like:

-Making eye contact even though it feels painfully uncomfortable

-Scripting conversations

-Imitating gestures/ facial expressions

-Trying to not stim or choosing a less obvious stim

-Hiding/ minimizing personal special interests.

As you can imagine, hiding who you truly are is exhausting and masking often leads to autistic burnout. Other consequences of regular masking are depression, anxiety, feeling a loss of identity and exhaustion.

Other Commonly Overlooked Autistic Traits

Additionally, many milder traits of autism may be overlooked or not understood for what they are. For example, 20 year old autistic blogger @neurodivergent_lou says “Autism is more than just a sum of external experiences. A lot of being autistic to me is the parts that are not visible and these autistic traits are equally valid, even if they are not spoken about enough.” One example she gives is about internal echolalia saying it can “also be internal where someone repeats words or sounds in their head rather than out loud.”

The Neurodiversity Paradigm

Autism has been largely misunderstood throughout time. Our understanding is rapidly changing and new information and insights are being introduced daily. We’ve shifted from “this is a disorder and needs to be fixed” to a greater understanding of the fact that neurological differences in the population are normal, natural and come with their own benefits.

The neurodiversity paradigm embraces that there is not a “right” or “wrong”style of neurocognitive functioning. It sees autism as a neurologically based variation that requires acceptance, respect, and accommodation, rather than seeking treatments that will make autistic people appear neurotypical or aim to rid them of their autism. (Myers, Carol. Neurodiversity: A Changing Paradigm 6/13/2022.)

Autistic people, those in the medical community including occupational therapists, speech language pathologists, parents of autistic children, etc. are all collectively contributing to the shift in thinking. Dr. Jac den Houting is a research psychologist and autistic activist who gave the viral Tedx Talk Why everything you know about autism is wrong and is one of many making an impact.

My Perspective

I’m an occupational therapist and it’s exciting for me to see this shift occurring. It’s refreshing to see my fellow OTs and SLPs starting to advocate and try to help shift the way of thinking about autism and neurological differences. Even small changes matter. When I was in college back in 2008, we were always taught “person first” language which would be “an individual with autism.” However, many autistic people and the general consensus in the autism community is that identify first language is preferred because it indicates that being autistic is an inherent part of their identity. They don’t have autism- they are autistic. Many therapists are introducing this into their vocabulary and adjusting even though it wasn’t how we were taught.

Another important message (parents, I’m talking to you) is to embrace your child’s weirdness! Autistic children and adults have special interests. It’s an important part of their identity and it’s important for them to share their interest in one form or another. A form of autistic masking is minimizing their special interests because they know it’s not appreciated or understood by the majority. Don’t allow this to happen to your child! Don’t try to deter your child from something they are passionate about- no matter how strange you think it is.

From the outside, special interests may seem repetitive, too narrow or limited, but they are anything but. To an autistic person, there is so much depth and scope of what they can learn and do with it.

When you follow your passions, you can never go wrong. It’s a terrifying path to take because you can’t see the endpoint. But if you continue on, new doors will start to open even though you weren’t able to see those doors initially. The key is to have the courage to take small steps when venturing onto something that’s “outside the norm” or doing something you aren’t used to.

When it comes time for parents to start thinking about careers for their autistic children, they get tunnel vision and try to cling to what they know. Maybe the family trend was to go into finance as a career- so they try to hard to mold their child to try and take this same path. The truth is, this seems like the easier route, but in reality it just may be more draining and exhausting.

Most autistic people do not tend to do well in traditional 9-5 jobs unless there are accommodations in place. Non traditional jobs within a niche are more fitting! Also, not to mention that entrepreneurship should always be considered a viable option for neurodivergent people. Different ways of thinking can be an asset to entrepreneurship and Sabini-Roberts talks about this in depth in this Tedx Talk Why Being Neurodiverse Can Make you a Brilliant Entrepreneur.

There’s so many roads to take- it just takes some thinking outside the box. Our world is rapidly changing and everything we knew to be “normal” is becoming obsolete. Many jobs of “now” will be a thing of the past with technology and AI becoming more prevalent. The kids of today and future generations will have to start forging their own paths and creating new jobs.

I like to think of the future as a place where you get paid to be your genuine self. Where you can make money by sharing your interest and passions with the world. If each and everyone of us contributed what we’re good at and what makes our soul sing, the world would be in a much different state.

Sometimes parents are so concerned with wanting their child to fit into society and so much effort and stress is put into trying to make their child be “normal.” But what if the answer simply lies in letting it all go? Shifting all the focus to try and understand how your child processes the world and then honing in on their strengths and building upon those…take their interests and expand upon them.

In this harsh world, build their confidence so that they have the courage to follow their dreams and step outside the boxes of society. Think of having a neurodivergent child as an opportunity to venture out and start making new paths!

A Meeting of the Minds

An important part of humanity should be collaboration between different minds. Neurotypicals and neurodivergent people have a lot to learn from each other. There should be a give and take. A meeting of the minds. When different minds work together and try to understand different ways of being and different states of consciousness, that’s where the magic happens. It’s how we evolve, learn and grow as humans.

Elaine Hall once said: “It takes a village to raise a child. It takes a child with autism to raise the consciousness of the village.” I love this quote because it’s true that autistic children force others to think outside of the box and look at things with a different perspective.

The Takeaway

We need to expand what we think we know about autism. The ‘quirky genius’ that stims, rocks, and flaps is just a stereotype and only a small piece of a much larger spectrum.

Because many sensory and neurodivergent traits are genetic, it’s often likely that if your child is neurodivergent, that you (or your spouse) is as well! Parenting is an intense experience. It forces us to look in the mirror and acknowledge our own behaviors, personality traits, and sensory processing sensitivities and preferences.

Self awareness is the first step in conscious parenting. Once you’re honest with yourself and take time to reflect, you will be able to help your child that much more!

Author: Christina Kozlowski, Occupational Therapist, OTR/L & Owner of Sensory TheraPLAY Box


Sources

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8286783/

https://www.theguardian.com/society/2018/sep/14/thousands-of-autistic-girls-and-women-going-undiagnosed-due-to-gender-bias

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4086365/

https://www.medicalnewstoday.com/articles/highly-sensitive-person#sensitivity-today-vs-the-past

https://www.medbridgeeducation.com/blog/2022/06/neurodiversity-a-changing-paradigm/

A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice Amy Pearson and Kieran RoseAutism in Adulthood 20213:152-60 

https://www.healthline.com/health/autism/autism-masking#definition

https://pubmed.ncbi.nlm.nih.gov/31319684/

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