How to be an autism ally

I have been thinking of writing a post about Autism for a long time. Pretty much since I started this blog. To be completely clear, I am not diagnosed with Autism. My son is neither, and I only know one person with an official diagnosis. Safe to say, I am not an expert by any means. So why would I even want to speak or write about this subject? I want to be an autism ally and raise awareness.

An autism ally?

I’d like to consider myself an autism ally. What does it mean? It is a person working to support and advocate for autistic people. It is an active role. So by not using an outlet like this to speak about this subject, I would be refusing to be one. But I am very early on my journey of understanding. I am afraid to say the wrong thing or do more harm than good. If you’re a part of the Autistic community and would like to educate me or correct me on anything I’m writing here, please let me know in the comments below or e-mail me directly. I would also love to know if there are ways to make this blog more accessible.

anxious parents

I became interested in Autism when my son was born. Of course I was aware of it before, but my knowledge was limited and unfortunately, quite stereotypical. I knew what I learned from my surroundings and experiences, which unfortunately wasn’t much, and media, which wasn’t great.

Being part of different online mom groups like those on Reddit and Facebook, as our babies develop and start hitting ages when they are expected to be able to do certain things called by the pediatric world “milestones,” the topic of Autism starts popping up more and more often. Especially in the context of early speech development. The milestone charts at scheduled age pediatric checkups also offer screening tests designed to identify early possible signs of Autism. Their goal is to screen and provide additional resources for these babies and their families. Little babies are too small to be diagnosed with Autism, but many concerned parents are looking for early signs.

The fact is that a worldwide increase awareness and broadened diagnostic criteria resulted in a significant raise in the rate of autism diagnoses.

Harmful stereotypes

I think we all have some preconceived notions and stereotypes about what Autism is and how it looks. We also probably heard it is a spectrum, which is correct – its full diagnostic name is Autism Spectrum Disorder. The most popular (and harmful at the same time) stereotype of autism is a little boy who loves playing with his trains, takes collecting things to extremes, avoids eye contact, and is awkward in social interactions. Historically, it was even thought that only boys could be autistic, unless girls presented some very obvious developmental delays.

Interestingly, another popular stereotype of a genius, brilliant but socially awkward, usually also a man, was attached to Asperger’s syndrome. In 2013, the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5) eliminated “Asperger’s Syndrome” as a separate diagnosis, instead folding it into the broader category of “Autism Spectrum Disorder” (ASD).

I’ve noticed a lot of confusion for people is adding the term “spectrum” itself. To make it more “palatable”, people started using terms like “high-functioning” and “low-functioning” autism. However, this is rejected by the autistic community itself. These terms seem to perpetuate the general population’s need (which is often called allistic: individuals that are not autistic) to quickly classify and superficially “understand” this condition. But it fails to see autistic people as individuals with various needs. The terms “low-support needs” and “high-support needs” seem to be preferred by the community instead.

Additionally, people with ASD might, but do not have to have co-occurring intellectual disabilities (that are usually first apparent during childhood) and various mental health conditions like anxiety disorder, ADHD, bipolar disorder, depression, GI problems, SPD, epilepsy, hypermobility, and many more. This makes it even more challenging to diagnose.

Not a gradient

The way I understand it is that the Spectrum of Autism is not a “gradient”. It doesn’t go from the most intense to the least intense “color”. The so-called “high-functioning” individuals with Autism, who are, let’s say, able to live alone and hold a professional job, still might need and want lots of support and help. They are paying the emotional and psychological price for their ability to function in society. A society that is not designed for them.

Not every Autistic person is a genius, disabled, shy, awkward, or avoids eye contact or stims. It affects everyone differently.

While I will not ever try to claim that “we are all on the spectrum,” which is harmful and detrimental for those individuals who need that diagnosis for fundamental life support and services, I find it very hard to draw a hard line between all the different people around the world and divide them into only two camps “normal” and “Autistic.” What is normal? Have you ever met a single person, got to know them completely, and deemed them absolutely “normal”? By what standards even?

We are all neurologically wired differently from each other. Neurodivergence is a broader term that includes autism, but also other neurological differences, that can be described by conditions like ADHD, dyslexia, Tourette’s syndrome, and even ticks. You can be neurodivergent and not have autism. Neurodiversity recognizes that people have different ways of thinking, learning, and behaving. And that these differences are normal variations, not necessarily indicative of a problem or disorder.

Masking

The concept that changed and expanded the understanding of autism is masking. Masking is a primarily unintentional process, in which an autistic person, usually starting in very early childhood, recognizes how others around them behave and alters their behavior to fit within that perceived norm. These young children learn to hide their true self, their true nature, and mold themselves into what society wants them to be. It’s not only about fitting in. People are protecting themselves from being taken advantage of and being hurt. It’s a survival mechanism. But it is exhausting and comes at a cost, usually presenting itself as an array of mental difficulties like depression, anxiety, and autistic burnout when some individuals stop being able to function or even speak for prolonged periods of time.

For some reason (my guess: additional stereotypes, dangers, and scrutiny), the researchers found that women and people with diverse sexual orientations and gender identities are more prone to masking than heterosexual boys/men. That started a wave of late diagnoses. Women in their 50s or 60s getting diagnosed and finally being able to piece their self-puzzle together a little bit better. It wasn’t a condition of only boys, after all. Women and Girls on the Autism Spectrum by Sarah Hendrickx was a very illuminating read for me as a woman.

Helpful resources

Women and Girls on the Autism Spectrum by Sarah Hendrickx

I recommend this book to anyone, whether Autistic or not.

Unmasking Autism by Devon Price

Another great book that expanded my understanding of ASD. This book offers a knowledge of autism spectrum disorder in diverse, often marginalized individuals and communities. It helps to reframe various stereotypes, offers practical tips, and educates on the language to respect others.

https://medium.com

Another resource I found incredibly informative is Medium. It is an online platform where anyone can publish and read stories about various subjects. It’s popular amongst the ASD community, with people sharing first-hand stories about their lives, challenges, and diagnoses.

Self-discovery

Since starting to dive into this subject, I started questioning myself. It became my intense interest for a while (intense interests are one of the common ASD characteristics). I identify with a lot of behaviors, traits, and experiences that people with Autism describe. On the other hand, I feel an immense imposter syndrome to be even writing about this, as my life has been relatively easy, even somewhat privileged.

I don’t know if it’s OK to use the term “neurospicy”, but it’s what I would describe myself. Between ticks, general and social anxiety, indulge in some repetitive behaviors and having intense interests (that don’t usually last that long), I believe I am getting a better understanding of myself. I was a quirky little girl who started speaking very early, always with her head in the clouds. However, I quickly learned which behaviors were welcomed and which were not. The concept of masking speaks directly to my heart, as I’ve tried to shape my slightly odd self into the mold of what was expected of me, and mostly with success.

I feel like by pursuing things like diagnoses I would be taking away from those that actually need it. If I must be honest completely, I would be absolutely terrified as a mother that that kind of information in a medical system could be detrimental to potential legal battles in court for my children (I’m speaking purely theoretically; I am currently happily married). Our society has a long way to go to be able to accommodate and respect the needs of everyone and make them feel as safe as they are, not just a smaller group of people that someone, someday, deemed “normal.”

With love and respect

I do not want to speak for the parents of toddlers or little kids that are being diagnosed with Autism. I am not in their shoes; I do not know how they feel or live. The cost of trying to support your diagnosed children’s needs every day is something I can only imagine.

As parents, we all want our kids to be healthy and happy, and we want to support them as much as possible. It is natural to worry, and it is natural to cheer on our babies as they develop and take those proverbial first steps. I believe it’s in our child’s best interest to educate ourselves on various subjects, Autism being one of them. Relying our approach solely on outdated stereotypes can only do more harm than good.

For example, many parents worry about their children’s delay in speech development and take it as a sign of Autism. But speaking very early or unusual speech patterns like echolalia (repeating whole sentences without fully understanding their meaning) might also be a sign of Autism. It is a broad subject that only trained professionals should opine on.

Beautiful people

But what I do know now is that people with Autism can live full, valuable, and beautiful lives to the fullest of their abilities. That they are unique in a way that helps the world change for the better. They have whole realms of beauty inside of them, ready to be shared if approached with love, respect, understanding, and the right communication tools. And it’s not them who need to change; it’s the world as we know it.

While I don’t feel like I’m in the place to tell parents not to pursue Applied Behavior Analysis (ABA) therapy for their autistic children, I found it incredibly eye-opening how the community recalls these experiences. I think it is at least worth researching beforehand.

Invisible Abuse: ABA and the things only autistic people can see

If you like my thoughts on parenting, check out my “crunchy, silky or scrunchy” post here.

References