Autism And Me—A First Person Account Of Life As An Autistic Adult
Awareness of autism spectrum disorders has increased diagnoses in children, but not public understanding of what ASD is like for autistic adults.
People with Autism Spectrum Disorders (ASD) are all around us—they’re integrated in schools and in the workforce. April is World Autism Awareness Month.
But for many of us, all we know about ASD are the news stories speculating about a diagnosis for a violent mass shooter or a savant with remarkable skills. This leads many to think people with ASD are violent sociopaths or someone who performs tricks.
We rarely hear directly from people with autism.
In today's The Big Picture, we'll change that when a member of Team Takei shares their experience as a person with autism.
— George Takei
Back at the turn of the 21st century, autism rates "skyrocketing" made a lot of headlines. Conspiracy theorists blamed ASD on everything from atomic bomb testing to fluoride in water to vaccines to GMOs.
ASD is defined as:
"A serious developmental disorder that impairs the ability to communicate and interact."
"Autism spectrum disorder impacts the nervous system."
The rates continued to increase, with 1 in 150 children diagnosed with autism by age 8 in 2000 rising to 1 in 54 by 2016. The latest data has the rate at 1 in 36 children.
No peer reviewed, validated research exists to support any of the conspiracy theorists' claims about the causes for ASD or the increased rates, but it doesn't stop people from perpetuating the lies.
Experts cite increased awareness of autism's existence and complexities, as well as "improvements in diagnostic tools and education." As late as the 1990s, autism was still considered a disorder exclusively found in boys. With the acknowledgement that autism presents across genders, the rates immediately increased sharply.
As a human with a diagnosis of ASD, it’s important for me to clear up some of the stigma created by media speculation and toxic so-called advocacy groups centered on serving those who live or work with autistic people as problems to be fixed, not people with disabilities to be reasonably accommodated.
These organizations advocate the use of a type of Applied Behavior Analysis (ABA) which forces children with autism to mask all of their responses—ABA programming that seeks to train compliant, obedient children which is not in the best interests of the learner. This controversial form of treatment has been criticized as abusive and traumatic and has negatively impacted the public perception of all forms of ABA.
The autism puzzle piece branding comes from this style of advocacy and is rarely used by teens or adults with autism. Instead the neurodivergent infinity symbol is used by groups like Actually Autistic.
People with ASD have historically been labeled as high functioning—meaning they are verbal and are largely able to integrate into the larger society—or low functioning—meaning nonverbal and unable to live independently. But people with autism eschew these labels, as they're deceptive.
Our functionality is highly dependent on our environment. A "high functioning" individual can go nonverbal because of a loud noise, or a smell, or fatigue disturbing their ability to mask their natural reactions.
But in truth, high functioning really means being forced to mask our autistic traits for the comfort of others. Masking is learned behavior that is exhausting to maintain 24/7—often leading to depression or mental breakdowns.
There's a good reason it's called being on the autism spectrum. No two people with autism will experience the same things in the same ways.
There are common traits the public associates with ASD:
lack of eye contact and social awkwardness
fidgeting or stimming
repetitive motions or speech patterns
obsessive behavior
But just because it's common doesn't mean all people with ASD experience it. And some autistic people either trained themselves or were forced to mask those common autism traits.
What ASD Is Like for Me
I was completely nonverbal for almost the first two years of my life.
According to my family, I didn't babble like most infants nor did I audibly cry very often. My Mother had my hearing and vocal chords evaluated multiple times as a result.
Then one day, shortly before my second birthday, I began speaking in complete sentences. No one in the family remembers my first words, but my Mother loved to tell people my second utterance.
I was sitting in a highchair by a table full of adults who all knew I was nonverbal. I joined the conversation at some point with a full sentence reaction to something that was said.
It was a shock for everyone. I was asked why I hadn't spoken before.
My Mother always said I replied:
"I never had anything to say before."
I don't have any memory of it, but the family swore it happened. Shortly after I started speaking, my Mother taught me to read at age 2.
Prior to that, I was labeled developmentally disabled—like most girls with autism in the early 1970s. I didn't get my autism diagnosis until I was 40-years-old.
Instead I had a host of diagnoses throughout my life including Obsessive Compulsive Disorder.
I don't experience hunger or thirst.
As an adult, discussing losing weight with my primary care doctor, she suggested I eat only when I was hungry. I've always had a tendency to forget to eat—which worsened once I lived alone as an adult—so I had alarms on my phone to remind me.
I turned off all my reminders then forgot to eat for 6 days.
My research found that lack of hunger and thirst triggers is a trait reported in autistic people. The thing in your brain or body that tells you you're hungry or thirsty either malfunctions or never existed in ours.
Studies found the idea a child will automatically ask for food when hungry doesn't work with many autistic infants and can lead to failure to thrive.
When I do remember to eat, it is often late at night as a memory function, not physical discomfort caused by hunger. I forget to drink as well, but it's easier to remember because my lips or mouth get dry.
I don't experience pain like neurotypical people.
I fell on the ice one day in spectacular fashion. I heard some cracking noises, but only felt bruising and scraping pain on soft tissues. I realized the lump under my back was my left foot and not a rock.
At the hospital they told me in addition to several sprains, strains and bruises, my foot was broken. But I had driven myself to the ER and walked in unaided.
I likely injured myself further because of the lack of pain.
I've had gallstones and kidney stones. Both are described as excruciatingly painful, but I only felt some pressure and had muscle spasms. My gallbladder was necrotic before I knew I had a problem.
Spicy foods, however, and certain sounds or smells can cause extreme pain, leading to vomiting or loss of consciousness.
Neurotypical people have told me tastes, sounds and smells are usually not physically painful.
Medications often work in unusual ways with my brain chemistry.
I'm deathly allergic to prednisone which is often used in the treatment of allergic reactions. I've been characterized by anesthesiologists as "very difficult" to anesthetize.
I have bad reactions to drugs that very rarely have side effects. A new medication is always a carefully monitored risk.
If I say or write something it's been meticulously crafted to express my exact meaning.
People speak of reading between the lines to get what a person really means, but there are no hidden meanings in my words and I don't understand the concept.
I struggle with people’s assumptions that everyone communicates in the same way.
I find people reinterpreting my words into something I never said or wrote very hurtful.
As neurodivergent Twitter user "lazy perfectionist" put it:
"neurodivergents often feel the need to clarify things hours/days after they said it because we grew up being constantly misunderstood & getting in trouble for miswording or being too blunt & can't stand the thought of people misunderstanding what we actually mean."
"we can often over-explain or 'not let something go' because we are so often misunderstood and want to eliminate any chance of that happening again."
"it's frequently a trauma response stemming from chronic ridicule and punishment after being misinterpreted."
I don't hint or drop subtle clues.
I either say something directly or say nothing. My direct nature can be very off-putting for people used to the little white lies and subtlety of average small talk.
I think in absolutes, but maybe not how most would assume.
For example, seemingly simple questions—such as what's your favorite color—are impossible for me to answer and induce anxiety. It’s an absolute question requiring me to identify one favorite.
But I can't respond with an absolute answer because there are different colors I like for different things—clothes I wear, cars, house paints, decor, etc....
On the flip side, I struggle with some standardized psychological testing. If it asks "Do you..." and if I have done it even once in my life, the answer is "yes." But the analysis is based on tendencies, not isolated incidents.
I have near total recall.
They call it an eidetic memory now. I remember the argument I had 12 years ago as clearly as the one I had 12 minutes ago.
Time doesn't lessen hurt feelings for me.
I'm more likely to tackle an issue to get resolution because I’m unable to forget what was said. I also obsess over mistakes I made when I was five as much as the ones I made five minutes ago because the two memories are equally vivid.
I'm more leery of interacting and developing close relationships for fear of mistakes that most people will easily forget or never notice. I spend more time observing than interacting because of this.
I have dysphasia.
Aphasia has made the news lately because of actor Bruce Willis' diagnosis. Aphasia is a loss of communication skills a person once had, due to illness or injury that can get worse depending on the cause.
Dysphasia presents the same challenges with communication except a person is born with it and it is less likely to get worse over time. Both conditions affect a person's ability to express and understand written and spoken language.
Normally I will pause while speaking because I cannot access the right word mid-sentence. One trick to help me recall words is to snap my fingers or roll my eyes up to the ceiling.
The stilted speech pattern and physical tricks I use can be confusing or off-putting for others.
When I'm tired or ill my dysphasia gets worse, affecting my speech and ability to write.
I have mild prosopagnosia.
That's face blindness. This is another common ASD trait.
When I first got my ASD diagnosis at age 40—at the time the term Asperger's Syndrome was still in use—it was as part of a study on prosopagnosia.
The childhood friend who recommended me for the study had such a severe case he was unable to recognize photographs of his parents. Mine is very mild in comparison, but it does lead to a lot of misunderstandings.
I don't acknowledge people I know when we're in the same place at the same time. I'm unable to recognize a person unless I actively examine their face for longer than it takes the average person.
Because it takes longer for me to process faces, I never recognize people when driving unless I know the car. I have failed to recognize even family members.
But people assume I’m just rude and am ignoring them when I don't acknowledge them in public.
Perhaps most importantly, I can't turn it off.
I can't turn off any of it. There's no mind over matter to eliminate the disorder. The reactions will always be there.
I can and have learned masking skills to blend into society, but when I'm overtired, sick or medicated my mask slips.
I was labeled “high functioning” socially because I forced myself to work in highly social situations like retail and on customer service phone lines.
But I still am on the autism spectrum.
I still have occasional meltdowns.
Children with ASD don't outgrow it. Our atypical reactions to stimuli never go away.
But we can learn tools to help us cope. And society can learn what has been labeled "normal" reactions and behaviors are just more common, not universal.
Would I rather be neurotypical?
No. I'm me and it works for me. I don’t want a cure for my autism.
What I'd like is for people to recognize we exist as more than children.
That if they have questions about autism, we’re the experts.
Speak to us, learn about our experiences.
The one trait we all share is the desire for acceptance and understanding.
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In addition to writing for The Big Picture, Amelia writes
Thank you for sharing your experiences with ASD, especially for describing them. I'm a 71 year old woman who was diagnosed with ASD in my late 60s. I was actually glad for the diagnosis since it explained so much about my behavior. I have always been very verbal and was reading before I entered kindergarten. I read Tolstoy and Dostoevsky in grade school. I taught myself how to mask certain behaviors such as fiddling with my fingernails (passes for female nervousness) or my toes (can't be seen in shoes). I was usually bored in school but learned not to be disruptive. When I'm out shopping I force myself to look at the person ringing up my purchases after the transaction and say thank you. I'm a retired academic who taught tax accounting and was an associate Dean. It took me a little while to learn to appear to be looking at students faces when I was actually looking at their desks or over their heads. I was fine with one-on-one conversations, it was crowds that were difficult (too many faces). I was the first faculty member in our business school to use online teaching which I viewed as fantastic. I never liked concerts or bars because there was too much noise. I have a near photographic memory - I see written information in my head, but it isn't complete. When I took my written PhD exams I wrote more than any other student had ever written. For my oral exam I prepared for days. I even sat in on another male student's oral exam so I felt ready. However, one of the male faculty members had made it clear while I was in the program that he didn't like the fact that he couldn't intimidate me. He had caused one female student to leave the program. During the oral exam he began to attack me. Since I had seen his very different behavior with the other male student I became upset and shut down. I looked in his direction but refused to answer his questions. This made the other male faculty (no female faculty) uncomfortable so they finally stepped in, asked me some routine questions and then declared that I had passed. I never understood why I shut down until I was diagnosed. I have shut down at other times over the years but in response to two abusive husbands, never in a professional setting. I suspect being ASD also explains the abusive husbands because in both cases, I never saw the "signs" or understood the abuse. I spend a long time writing emails (and comments on Substack) because I don't want to be misunderstood. I also deal with absolutes - doctor's questionnaires asking about drinking are posed as yes or no, and then frequency. Do I answer yes thinking "maybe once very five or six months (never an option)" or answer no which isn't true. I've always been able to "zone out" which means I don't see, hear or react to what's going on around me if I'm in a crowd. I don't recognize people I know when they drive by me. I've told people that I have two databases, one with names and one with faces, and these two databases do not merge very well. This is my way of masking. I've always hoped that I'm never a witness to a crime because I don't want to explain how I don't look at peoples' faces. I too pause when speaking while I try to find the right word and I have been known to respond to someone and then come back later to explain my response just to be certain that they understand what I've said. I've been told all my life that I'm rude, or too blunt because I need to be honest. I'm definitely not subtle. I've always been told that I'm stubborn, not persistent, because I don't simply obey others if I think they're wrong. I was lucky that I was a tenured professor, which means I couldn't be fired, since I always gave my honest opinion on administrative matters and that was rarely appreciated by the mostly male administrators. During my career I've been attacked by male faculty who opposed my tenure and promotions on personal grounds (they didn't like my attitude) although they tried to couch it in professional terms. I always fought back and, since I knew the procedures and qualifications better than they did, I always won. I have never been social but had to learn how to survive during business social events - hold a drink, stand out of the way, look out a window, and have a couple of questions at the ready, such as how's your family, how are your kids, how are your classes going and let the other person(s) do the talking. I was always exhausted after these events or after a day of teaching and/or meetings. I told my family and my friends that I'm autistic and that was such a relief because they know that I'm fairly anti-social and being alone is not the same thing as being lonely. It really helps to understand why you are the way you are and, like Amelia, I am perfectly content with who I am. I view ASD the same way I view the fact that I have blue eyes, red hair (not any longer but hair dye is a wonderful thing) and fair skin.
Excellent, well-written and extremely helpful for those of us who want to understand more. Thank you.