What It Means to be Autistic (Pt. 1)
A neurodiversity-affirming guide for youth, teens, parents, and caregivers
The purpose of my new eBook
I began writing this eBook after my son was formally diagnosed with Autism, at age 11.
I’d been pretty certain about both of us being Autistic for a few years, so it didn’t come as much of a surprise to me… but my spouse and son didn’t have the benefit of 20 years’ experience and two relevant post-secondary degrees to help them process this new information.
I wanted my family, and all families, to have access to easy-to-understand, neuro-affirming, non-pathologizing information about autism.
What do I mean by neuro-affirming and non-pathologizing?
A lot of the literature out there, and the information you may receive from doctors, clinicians, and other professionals will likely be focused on “deficits”: things they have determined our children can’t do as well as other kids their age.
In presenting autism as a list of deficits, this also allows service providers to sell their services to bewildered parents who just want to do what’s best for their children.
Some of those services will be wonderfully supportive and child-centred. They will focus on your child’s strengths and respect their autonomy.
A note for parents
(From one parent to another).
There are the good service providers. And then there are those other service providers.
Unfortunately these types are highly prevalent in the autism “industry” because of the widespread deficits view. What these services do is take that list of things our kids can’t do as well as others (or simply do differently) and come up with a “treatment plan” to try to help (force) our children to behave as typically as possible.
Dear parents,
I know you want to do the absolute best for your child. If autism is new to you, you might be feeling completely lost and overwhelmed by the amount of conflicting information out there.
Breathe.
When you have a moment, look at your child when they are playing or doing something that makes them happy. Just look at them and appreciate their joy.
Their joy may not look exactly the same as other children their age, but it doesn’t have to.
Instead of the list of deficits the psychologist or doctor gave to you, make a list of all your child’s strengths. Their best qualities. What do you most love and appreciate about them?
Hold tight to that list and to your child. Keep those amazing qualities about your child and the things that make them happy at the forefront of your mind.
I know you love your child and want what’s best for them, and you’re trusting the professionals to give you advice that will help you do exactly that.
Sort the good from the bad
Unfortunately autism “treatment” has become an entire industry. I’m sorry to tell you this, but beyond assessment and diagnosis, some professionals don’t truly know much about the lives of actually Autistic people.
These uninformed clinicians may hand you a much-photocopied list of resources — resources which they probably have not had the time to investigate and ensure they are good ones to be recommending.
At the risk of sounding like a bit of a conspiracy theorist (I promise I’m not), clinicians are not immune to the sales tactics of the autism industry. Most of them were taught during their training that behavioural therapies are the “gold standard” of treatment for autism.
They’re not.
If your child was diagnosed with autism at a young age, you will likely hear terms like “early intervention” and “ABA therapy”. I’ve written extensively on the risks and harms of coercive behavioural therapies, so I won’t go into that here.
What I will tell you, as an Autistic parent with an Autistic child, is this.
Autism is an inextricable part of who we are. You cannot separate the autism from the person. It’s part of our entire nervous system, part of our whole being.
While being Autistic in a world made for neurotypical or allistic (non-autistic) people can make our lives more difficult, being Autistic is also ingrained in our strengths, in what makes us unique. You can’t take away the autism and leave the rest, it’s just not possible.
Autism is an inextricable part of who we are.
What does it mean to be Autistic?
An excerpt from my eBook for teens, youth, and everybody else.
That’s a great question. It’s not an easy one to answer because being Autistic is different for every person who has autism.
There is no single way to be Autistic, but there are some traits which are common across Autistic people, which is how we determine a diagnosis.
While there are common traits or characteristics, no Autistic person experiences every single one — and no two people experience them in exactly the same way. And not everyone who has these traits is Autistic.
If a person has enough of those traits that they are different from other people their age in those particular ways, then they may be diagnosed with autism.
Being diagnosed with autism can be confusing at first. There are a lot of stereotypes that make us think about Autistic people in very specific ways, but stereotypes are just that — big, sweeping generalizations which are often inaccurate, and in some cases, even harmful.
If you have recently been told you’re Autistic, remember this: you’re the exact same person you were the moment before you were told. Now you get to understand yourself a bit better. It simply means you have enough of the traits on the autism checklist to be diagnosed.
If you’ve met someone with autism before, or have a particular idea in your mind about what an Autistic person “looks” and acts like, you may not understand how you could also be Autistic.
It’s okay to be confused at first. Understanding and learning new information about ourselves can be really helpful, but it can take time to get used to new ideas, especially if we’ve never thought about them before.
It’s completely natural to have a lot of different feelings. Some people experience relief at finally understanding why they always felt a bit different. Some people are angry because they don’t want to be different! Some people are sad because they think being Autistic is a negative thing.
Some people feel scared because they’re not sure exactly what this means for them. Some people are sad because they think being Autistic is a negative thing. It definitely doesn’t have to be. Being Autistic can have a lot of positive sides too!
Most people probably experience all of those emotions and more throughout the process of understanding and embracing their new diagnosis. That roller-coaster of emotions is also entirely natural.
Just as there’s no right or wrong way to be Autistic, there’s no right or wrong way to feel about being Autistic. Our feelings change a lot throughout our lifetimes, so whatever you’re feeling now will probably not last forever.
As mentioned, what it means to be Autistic will be different for every person, and each person will experience these common traits in different ways.
But if you’re wondering what it means to be Autistic, and how you may have come to receive the diagnosis, my coming articles and eBook will explain some of the traits that many Autistic people tend to have.
© Jillian Enright, Neurodiversity MB
My new eBook is now available for purchase in the Kindle store!
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