April is autism acceptance month and I'm grateful to share a personal and eye-opening guest post written by Sydney. She found out she is on the spectrum in her 40s, which came as a surprise to us both.
It has been an enlightening discovery that has explained and taught us so much about how to better communicate. Further, I have more empathy and understanding of the way my wife does things.
I hope her story will help spread awareness and acceptance of just how diverse and remarkable the spectrum truly is. The better we can understand other people, the less conflict there will be. – Sam
Discovering Autism As An Adult Woman
How did the height of the global pandemic affect your life? I'd wager it was aggravating and down right exhausting. But, hopefully you turned some of those endless barrels of lemons into lemonade.
Maybe you picked up a new hobby, switched careers, really focused on your family, or KonMari‘d your whole house.
I discovered at age 40, right smack dab in the middle of the global pandemic, that I've been on the spectrum my whole life. Phew! It was quite a lot to experience.
Autism Awareness And Acceptance
I'll get into how I found out I'm autistic below. But first I want to explain what autism is and what it's not. My primary goal with this post is to raise awareness, acceptance, and share some surprising things that you may not be aware of.
If someone like me can discover I'm autistic at age 40, surely someone else out there may too. Based on my research, there are actually quite a lot of people who have gone through a similar self-discovery experience as adults, especially women.
I have a type of autism formerly known as Asperger's syndrome – I'll explain why this classification was disbanded below – and am fortunate to have lived a very independent life.
Although I went through the last four decades not knowing I'm on the spectrum, I am in no way trying to downplay the immense challenges that autism has in many people's daily lives. Some children get a diagnosis as early as 18 months of age and may require dependent care their entire lives.
For a look into a very different autism experience than mine, check out Eileen Shaklee and Kate Swenson‘s blogs. These incredible moms openly write about their lives raising autistic kids. The fears, isolation, sadness, wins, regressions, and struggles they face every day are intense and real.
Wherever individuals fall on the spectrum, I want to spread love that we are all incredible people who don't need a “cure.” We think, feel, and express ourselves differently, sometimes significantly differently. And we are loved for who we are.
What Autism Is And Is Not
Now let's squash some misconceptions. First of all, autism spectrum disorder (ASD) is not a mental health disorder. It is a neurological disorder. What this means is that people on the spectrum have physical differences in their brain structures and neurotransmitter levels.
The term “neurodivergent” is often used to describe those with autism, or other conditions of mental variations, versus “neurotypical” for those without autism.
In other words, autistic people like myself have neurodivergent brains that are wired differently. As a result, we process and respond to stimuli, information, emotions, and social situations differently than “everybody else,” or ”neurotypicals.”
Autism is an invisible condition that you can not see. People do not “look” autistic. So it's inappropriate to tell someone, “but you don't look autistic.”
The Complex And Evolving History Of Autism
Autism also has quite an evolving history. It's important to know the emergence of autism is not new. For example, a child now known to have had autism, was written about way back in 1799 over 200 years ago. The word autism was first used in 1908. And then in 1943, scientist Leo Kanner first wrote about autism appearing in children, almost eight decades ago.
Also important to note, autism it not caused by vaccines. The 1998 study that led everyone to believe that the MMR vaccine was linked to autism, was proven to be totally fabricated and retracted. In addition, the myth that the mercury-based vaccine preservative thimerosal caused ASD was also debunked.
Bear in mind there is no single cause of autism. However, research shows it does tend to run in families. But other studies also suggest it can develop from a combination of genetic and nongenetic, or environmental, influences.
ASD is highly complex and as unique to each individual as fingerprints. There is also an incredibly broad range in characteristics and severity, or sometimes lack thereof, hence the reference to being “on the spectrum.”
Girls And Women Have Been Overlooked Or Misdiagnosed
Historically it was thought to only affect males except in very rare cases. But, we now know girls and women can also have autism.
However, it often manifests differently in girls and has been harder to diagnose. Hopefully more research on spectrum girls and increased awareness will improve assessment techniques for females seeking diagnoses and support.
I found the below TED talk by Niamh McCann at age 16 on hidden Asperger's in girls quite enlightening. She's on the spectrum but “failed” traditional autism diagnosis tests. I loved her introduction, which was one of my lightbulb moments.
Without giving too much away, what comes to mind when you read the below sentences?
He bent over backwards.
She was on the ball.
The corresponding images she reveals from her own thoughts are exactly what I envisioned too. A somewhat funny, but very true example of how my brain works, literally, like hers and so many others.
Colorful metaphors, slang, and sarcasm may be very confusing or more difficult to pick up by those with autism as well.
Can You Repeat That?
Another common though unofficial trait, which I have, is experiencing delays between hearing spoken words and processing those sounds into recognizable words.
This affects me often enough that at one point Sam thought I was losing my hearing many years ago because I kept asking, “What did you say? Can you repeat that?” He encouraged me go to an ENT for a hearing test. But I passed the hearing test with flying colors because my difficulty “hearing” is due to how my brain processes language, not my ears.
It's Not Called Asperger's Anymore
Speaking of Asperger's, however, I was surprised to learn a couple months ago that Asperger's Syndrome is technically defunct and is no longer considered a separate condition.
If you're unfamiliar with it, those diagnosed with Asperger's generally have typical-to-strong verbal skills and intelligence; strengths in focus, persistence and patterns; and a high attention to detail. But some of the common challenges include social interactions and changes in routine.
They might speak in a blunt or direct manner, leave long pauses in conversations, and have facial expressions (ex. blank, bored, sad) that don't match how they're feeling. If you've spoken to someone with these traits, you may have misinterpreted their mannerisms as rude.
Hopefully these types of misinterpretations will decrease with more awareness and acceptance of neurological differences.
Aspergers's Syndrome became an official diagnosis in 1994. But it was removed from the DSM (Diagnostic and Statistical Manual of Mental Disorders) less than twenty years later in 2013.
This reversal upset a lot of people in the “aspie” community who didn't want their identity taken away and rolled into autism. So why the change? Essentially, two distinct categories of autism was causing more harm than good.
Drop Low-Functioning Versus High-Functioning Autism Labels
People felt it was misleading to label autistic people as “high-functioning” or “low-functioning.” Plus, a lot of individuals have overlapping characteristics or fall somewhere in the middle.
The split was also causing problems with insurance billing. And the therapies/training prescribed for those with Asperger's were often insufficient.
Meanwhile, those separately categorized as autistic were also hurting, especially non-speaking children and young adults in need of dependent care. They were facing issues with discrimination and having their abilities underestimated.
What's also worth noting is a lot of disturbing history was unearthed about Hans Asperger and his involvement with the Nazis. He was the scientist and pediatrician who first studied children in 1944 who exhibited the characteristics that later became defined as Asperger's syndrome in 1981.
Knowing all of this, it seems fitting that the Asperger's classification was dropped in 2013.
The Autism Spectrum Is Not Linear
It's also important to know that autism is not linear. There is a shift towards visualizing the autism spectrum as a color wheel. There is currently no standardized visual representation. However, one of many examples is below. Weaknesses can be indicated closer to the center, strengths toward the exterior.
Even with all the research and progress that's been made, people are slow to recognize and accept change. For example, you'll still find hundreds of books and references to Asperger's and high-functioning vs low-functioning autism. Those terms are obsolete, but it could take years for them to fully fade away.
Other Interesting Facts About Autism
Here are some additional facts and statistics about autism that I found insightful.
- Roughly 1 in 44 children are diagnosed with ASD in the US according to the CDC.
- You can't check for autism using a blood test. Brain scans may become reliable for diagnoses in the future.
- Children do not grow out of autism; it is a lifelong condition that may appear as early as 18 months old.
- Autism is present in all ethnicities and socioeconomic groups. However, minorities are often diagnosed later and less frequently.
- About 40% of autistic people are non-speaking.
- Today, the DSM-5 categorizes autism into 3 levels, Level 1, Level 2, and Level 3.
- Although testing techniques may be inapt, studies estimate that roughly
- 31% of autistic children have an intellectual disability (IQ < 70),
- 25% are borderline (IQ 71-85), and
- 44% have average or above average (IQ > 85).
- Sadly, 66% of autistic children (ages 6-15) have been bullied. This needs to stop right now. With more education about autism in school, there should be more kindness.
- Studies show somewhere between 30-61% of autistic children also have ADHD.
- Early intervention is vital for autistic children and can help improve their learning, social skills, communication, speech, and brain development.
- Autistic individuals feel as much, if not more, empathy and emotions as others. However, it may be harder to recognize or expressed in atypical ways, especially if they feel anxious.
- ASD doesn't make a person cold or unemotional.
- Many people with autism feel and express love, have a sense of humor, enjoy hugs, and want meaningful relationships and friends.
- Savant syndrome, a combination of significant cognitive impairments and extraordinary abilities, was previously thought to affect 1 in 10 people with ASD. However, new research suggests the rate could be as high as 1 in 3 people with ASD.
- Interestingly, about 50% of savants are autistic and have remarkable talents in math, music, language, and art.
How I Discovered I’m Autistic
So how did I discover I'm autistic? It all started when I was doing research on child development, which I find incredibly fascinating. Once you become a parent, there are endless questions and observations that will swirl around in your mind when you watch your own children, their classmates, and strangers' kids on the playground, in school, at playdates, or just out and about.
In any case, late one night I was down a rabbit hole reading about milestones and child development when I came across an article on “traits of Level 1 autism.” I clearly remember reading it and thinking, Weird. That sounds exactly like me.
I brushed it off at the time, but a seed was planted in my brain that wouldn't stay dormant. A few weeks later, I ended up in another rabbit hole on autistic traits and adult diagnoses. A strange feeling was growing in my stomach.
My Autism Self-Diagnosis At Age 40
Finally one night after putting our kids to bed, I took an autism self-assessment test online. I was expecting negative, inconclusive, or mixed results at best.
Instead, I got a resounding you're autistic result staring me back in the face. You may scoff in disbelief at the reliability of a self-assessment test. But I knew in my gut that the results were right. I've had subtle traits of autism since my childhood.
There have been many times in my life when I've done or said something with purely good intentions that to my surprise resulted in people close to me saying,
Why did you say that when you should have said this instead?
Do I really have to spell everything out for you to understand? Can't you take a hint?
I feel exhausted talking to you.
You really don't get the joke? But it's so obvious!
It's not easy to hear words like that. But, fortunately I'm patient and forgiving. And I know when my intentions are good even if the other person did not.
Anyway, after taking the assessment, I started to freak out. I didn't need to get an official diagnosis to be sure. I just I knew that I am autistic. But how would I break the news to Sam? I decided not to overthink it.
I closed my laptop, went straight to the living room and spilled the beans. Sam was calm as a cucumber, non judgmental, and inquisitive.
He instantly wanted to take the same test out of curiosity. “Maybe I'm autistic too,” he said. “And if so, we can be autistic together,” as he smiled my way.
His result? Negative. He scored a 10, which was within the range of 0 – 25 for no autism.
Of course, taking a quiz to determine if you are autistic or anything else is not a formal diagnosis. Seek out a professional or multiple professionals if you want concrete answers. But you likely know your past and present self better than anyone else. Go forward with whatever you feel is in your best interest.
Embracing A Refined Identity
In the months that followed, I got used to identifying as autistic. It was strange at first, but as I got used to it, I felt cool about my new identity in a geeky type of way.
I continued to read, read, and read some more. And had so many lightbulb moments about how I think, communicate, react, and don't react in life. I understand myself so much better and am happy to just be me.
Glad To Keep Learning About Who I Am
With my personality, it's probably a good thing I didn't know about my ASD when I was younger. I think I would have put up mental walls on my hopes and dreams, and been less gung-ho in my career.
My focus now is forward.
I also haven't told anybody I'm neurodivergent except Sam and those of you who are reading this post. I don't feel like my parents, relatives, friends, or former colleagues need to know. They already know me for me.
I decided to share my story here publicly because my goal is to educate and increase acceptance. And it's also very unlikely that I know you personally lol. Thus, I don't fear judgement or awkwardness at a future encounter. You probably just know me for the words that I write, which I do my best to articulate, and that's what I care about most.
To A More Diverse And Neurodivergent World
I'm hopeful there will be continual advancement in research studies, diagnosis techniques, and awareness. Thus, it wouldn't surprise me if autism statistics increase in the next 5, 10, 20 years especially for girls and women.
In case you're curious about autistic celebrities, here's a short list. Elon Musk, Dan Aykroyd, Daryl Hannah, Sir Anthony Hopkins, Tim Burton, Dr. Temple Grandin (scientist and animal behaviorist), and Satoshi Tajiri (creator of Pokemon).
In addition, it's also speculated that Albert Einstein, Sir Isaac Newton, and Steve Jobs were on the spectrum, and it's thought that Bill Gates is as well.
Ever since I discovered I'm on the spectrum, I've been kinder to myself too. Sam has also been more patient and accepting.
We also joke around a lot more about my quirks and things like my inability to understand sarcasm on Twitter. It's easy for me to pick up on sarcasm when I hear it, but rarely when I read it.
Look Inwards And Outwards
My surprise of a lifetime goes to show we should never stop learning about ourselves and others. There's always something new to discover. Plus, the better you understand yourself and the more answers you uncover, the more accepting you can be of other people and they can be of you too.
If you're curious to learn more, you can read another article I wrote, My Autistic Life: From Childhood To My 40s. I discuss how autism has impacted my life, include a detailed list of some lesser known autistic traits, and links to books and resources I've read.
Readers, are you or someone close to you on the autism spectrum? What are some things that you have learned along the way? For those less familiar with autism, what did you find enlightening in this post and others? Thanks for reading! – Sydney
I really appreciate Sydney writing this post. It wasn't easy to open up to the public. This post has also gone through many iterations over the weeks. I'm proud she has shared her story of self-discovery to potentially help others on their own journey.
Our personalities are very different, which is part of the reason why we attracted so well when we first met in college. And even after 25 years of knowing each other, we still have our moments of conflict and misunderstanding.
Now that I know she's likely on the autism spectrum, I try to be more clear and more serious when I'm trying to communicate something important. I also give her more time to process what I'm saying instead of get impatient when she doesn't respond immediately.
My issue is that I'm often joking around and want decisions made quickly because that is how my brain works. It would be good if I could slow down.
“To know thyself is the beginning of wisdom,” wrote Socrates. Being able to just be yourself is also a wonderful feeling.
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