Autism has been a big topic amongst the president-elect and his picks of department leaders. Recently, Trump suggested in an interview with NBC that RFK Jr. will investigate the relationship between vaccines and autism.
Then he changes his train of thought to drugs, inflation, pesticides, and RFK Jr. If these topics are believed to be linked to his thoughts on autism, we may be able to infer that RFK Jr., who has a history of blaming vaccines for the prevalence of autism, may be investing in more research about what causes autism.
Before we continue, I want to ensure we use the correct statistics. It is estimated that in the U.S., about 1 in 36 children are diagnosed with autism spectrum disorder or ASD. Worldwide, the number is closer to 1 in 100.
Twenty years ago, in the year 2000, the prevalence was about 1 in 150 in the U.S., not 1 in 100,000.
But does this mean it is becoming more common or not?
Researchers suggest that we are better at diagnosing ASD now. With increased awareness, neuropsychologists can more easily detect and diagnose ASD using the current DSM5.
Others have proposed that perhaps autism may be a favorable trait. Since autism has been found to be linked genetically, it is a possibility that people prefer partners with ASD, leading to more autistic folks being born.
When the interviewer tries to direct Trump back to the question, he continues:
After wandering off, he is told that now researchers have become better at identifying it, to which he responds:
I’m not sure why it is a bad number to have autistic folks in existence. In fact, I think it is dangerous to insinuate that the rise of autism is factually a “bad” thing. The statement to “look at everything” sounds to me like there is an essence of urgency in finding the root cause of autism, which, in Trump’s own words, seems to be focused on causes that are post-birth and development.
Autism is a neurodevelopmental condition, which means a person is born autistic. They do not become autistic later in life, they cannot catch autism, and they one day cannot be neurotypical and the next neurodivergent. That isn’t how our brains work.
Later, he continues with his most terrifying statement.
What is pretty scary? I’m confused.
The increase in people with autism is scary? Does that mean autism is scary? Should people fear autistic folks? Should people fear giving birth to an autistic child?
There are wild “treatments” for autism that are promoted, such as giving your autistic loved one bleach to drink. There was also the anti-vaccination movement that was to promote there being fewer autistic people.
Would this fear of autism result in a way to lessen the amount of autistic people born? There are many researchers looking into the DNA samples of autistic people so they can help their well-being. But what does DNA research do to help with societal issues and the lack of support for people with autism?
Perhaps the research on autistic traits in DNA would result in some sort of reproductive technology that allows parents to select an embryo without autism. Or perhaps it would develop further into ideas of sterilizing people who are autistic to stop the spread of autism so the numbers of children with autism can be “less scary”?
Oh, wait. That’s eugenics.
The research into archaic ideas, such as if vaccines cause autism, is unnecessary and useless. Vaccines save lives. Vaccines do not cause autism.
This is a waste of time, money, and resources. This only increases unnecessary fears of autism and the fabled “innocent children” who are at risk of contracting something that cannot be contracted. This conspiracy only makes it more dangerous to be autistic as people want to cure them, fix them, and stop the “scary” rise of autism.
What is autism?
Autism (ASD) is a neurodevelopmental condition that affects how people interact and communicate with the world.
It is not a learning disability.
It is not a mental health condition.
A neurodevelopmental disorder means that the person is born with it. It is how their brain develops, and often, the signs of autism can be seen within the first few years of life.
People can’t “catch” autism, and it isn’t something that people “have,” like a cold or an illness. Autism isn’t separate from the person — it quite literally is the person.
Autism isn’t to be feared because autism isn’t bad. Despite Trump saying the rise of autism is “scary,” it isn’t.
A popular saying in the community is that if you’ve met one person with autism, you’ve meant one person with autism. Everyone is different, from different support needs to how autism is displayed.
RFK Jr. stated on the Joe Rogan Experience on June 15th, 2023, that:
And this is alarming, disrespectful, unjust, and horrendous for the person that Trump selected to be his next secretary of the Department of Health and Human Services to speak so ignorantly on autism.
Why does it seem like more people are autistic?
If you look around online, there seems to be a wave of disgust over the amount of people who are claiming to be autistic, including subreddits dedicated to “outing” people they don’t deem autistic enough or those who they don’t believe have a true diagnosis, even if they claim they do.
No one has to disclose that they are autistic, and HIPAA protects patients’ health information, so no one is required to share anything they don’t want to.
Perhaps more people could be autistic now than ever before. If there is an increasing number of autistic people, this could mean that autism (even the genes without the presence of autism) may actually be a favorable trait in partners, considering autism is genetic.
However, what we do know factually is that more people are seeking a diagnosis, and professionals are better prepared to recognize and diagnose autism.
This doesn’t mean that past generations didn’t have autism. This simply means we didn’t have the tools and understanding to be able to diagnose it.
Elder autistic people and people with autism from generations past were likely called loners, hermits, lazy, rebellious, stubborn, difficult, stupid, dumb, whiny, etc., because neurotypical people did not understand autism. They were also misdiagnosed with other conditions, locked in mental hospitals, and more.
Claiming that vaccines cause autism is dangerous for autistic people.
Despite the evidence being undoubtedly clear that there is no link between vaccines and autism, there is still a large portion of the world that believes the false rhetoric peddled by leaders.
These false and dangerous claims can lead parents of autistic children not to seek services or assistance that their autistic child may need and instead invest their resources into trying to find a non-existent or necessary cure for their child instead of trying to support their child.
These false cures, as noted before, can be dangerous, such as the horrific suggestion to poison autistic individuals with bleach.
I’ve often encountered people wearing “I love my autistic grandson” shirts. However, their grandson, who didn’t consent to his medical information being displayed on a t-shirt, has a meltdown because he’s in the center of a Waffle House where waitresses are screaming orders, cooks are clanging pots and pans, and the scent of food is so strong it feels like your eating even when you’re not. There are no accommodations for the child nor attempts made to remove him from the overwhelm. The child is scolded and forced to endure the overwhelm, which can register (to an autistic person) as physically painful.
Instead of educating parents, loved ones, and society on how we can better accommodate people with autism, those people often only see this all-to-common take that autism is a “scary” problem.
And what people often forget is that autistic children grow into autistic adults.
Being raised in an abusive guardian-child relationship where it is reinforced that the autistic child is the “problem” reverts back to self-hate for purely existing the way that you are.
The danger of not being diagnosed.
If people fear autism, people will be less likely to seek a diagnosis for themselves or their children.
A person living with undiagnosed autism may wonder what is wrong with them, leading to depression, anxiety, loss of self-esteem, and loss of life.
Not to mention, getting diagnosed is incredibly expensive (even with insurance) and is time-consuming with a long waitlist.
There are safety risks of autistic people being “prey” for bullies, predators, and abusers (not only in childhood but throughout life).
This results in the diagnosis of PTSD or c-PTSD alongside late-diagnosed autistic people because of the abuse they’ve had to endure.
Autistic people have frequently been treated as the “others,” regardless of a formal diagnosis or not. This has led to autistic folks feeling as if being victimized is a normal part of life, believing that everyone must be treated this way and other people simply aren’t talking about it.
This victimization leads to the development of masking, which is where the individual will intentionally or unintentionally mirror those around them to appear like a neurotypical person. Masking in this way leads to loss of self-identity, exhaustion, and extreme burnout.
Not knowing that they are autistic means they may never get the assistance, accommodations, self-love, and understanding they need.
Autistic people are paid less, struggle more, and don’t have access to resources.
Autistic people don’t “get” anything for being diagnosed as autistic.
There is no trophy, award, or monetary compensation to help with any form of accommodation. They are simply granted the label of autistic and find out that when trying to relate to people in media, there are very poor depictions of people pretending to be autistic and leaning into stereotypes.
What autistic people do gain is potentially becoming a victim of ableism, discrimination, and abuse.
There is no golden ticket, no assistance, and no shortcuts given.
In the workplace, many (stats vary around the 50% mark) of autistic adults are not employed, and those that are can legally be paid less than minimum wage due to Subminimum Wage from the U.S. Department of Labor Section 14(c) of the Fair Labor Standards Act.
Reverse the rolls for a minute.
If you are reading this and were born neurotypical or allistic (without autism), then we are going to pretend that being neurotypical isn’t the norm in this world — so you are different. Very different.
I will take you somewhere with me, and I have decided to wear a shirt that says I love my allistic friend to show you I support you. You love small talk, don’t mind loud noises, and love to look people in the eye while speaking, which is not okay. This world is quiet; people speak literally and think you need to be cured!
People have harmed you while they keep trying to find a cure for your behaviors that, while normal in your mind, everyone else decided is disturbing.
Despite being born this way, you feel perfectly acceptable despite the world feeling a little silly and funny at times. Other people blame your “problems,” which are just your normal behaviors, on the food you eat, the vaccines you’ve received, anything and everything else under the sun, but instead of listening to you, they tell you they know better, and you need to be cured.
This is a serious problem.
Everyone deserves a place in this world, autistic or not.
COVID didn’t make people autistic.
COVID was a horrible moment in the world. But during that time, many people were working from home, social distancing and workplaces became accommodating, allowing people to continue their work in the comfort of their homes.
Many autistic people realized, despite the horrible circumstances that created COVID, that they enjoyed being isolated, able to wear comfortable clothes, could pick up groceries from the comfort of their car, and had the ability to control their environment (sound/lights/smells/etc.) and could avoid watercooler talk, forced conversations and in-person meetings.
When going back to work, many undiagnosed autistic people realized how awful the workplace was after a time of unmasking. Undiagnosed autistics started trying to figure out why they felt different than their peers, who seemed to enjoy being back to normal life. Many started getting diagnosed and beginning to understand their entire life. It wasn’t because of COVID or the vaccine, but simply because COVID was a time of accommodation for many autistic people who didn’t realize how beneficial accommodations could be for their overall wellness.
How to support autistic people.
- Listen to autistic voices instead of voices that don’t understand autism.
- Know that autistic people aren’t a problem and fight against the rhetoric that claims they are.
- Autistic people don’t need to be cured because there is nothing to cure.
- Have kindness and be accommodating. If they ask for space, give them space.
- Being autistic doesn’t mean someone is stupid or without the ability to function.
- Being burnt out or overwhelmed makes everything appear brighter, louder, smellier, itchier, and more irritating. In these moments, be patient.
- If someone is wearing noise-canceling headphones, don’t yell at them; instead, respect that they may need to have a moment of quiet.
- If someone doesn’t reply immediately, don’t make fun of them. Sometimes, when conversations go off the usual path or script, understanding the questions and formulating a response takes a moment.
Why do I feel like I can speak on autism?
I grew up wishing I could go “home” because I never felt like I belonged on this earth.
Everything felt backward and foreign, and no one seemed to understand me. Sure, we could find commonality, but the things I experienced were more excessive than others and affected me daily, hourly, and minute-by-minute. Not just one random time here or there.
I struggled. I was bullied. I was assaulted. I was abused.
From childhood and into adulthood, I never knew “why me?” and I often considered the possibility that I missed a day of school where all the students and teachers pulled a name from a hat. That name was a person to pick on, and that name happened to be mine.
It felt as though people could see something about me that I couldn’t see, and I often asked friends (after getting to know me) why other people treated me differently. Some didn’t know, others said I was intimidating, and others said I looked too serious all the time, which was strange because I always tried to keep a slight smile on my face so I didn’t seem angry when I wasn’t.
Young autistic people realize they must mask to fit in.
I was told I was too smart to struggle with school and encouraged to simply work harder despite already trying my hardest and receiving near-perfect grades. Because I was gifted (tested with a high IQ), it was overlooked that I had learning disabilities: dyslexia and dyscalculia, which I didn’t even realize I had until adulthood after my college years were over. (This is often referred to as 2E or twice-exceptional).
I’m hyper-empathic and thought everyone felt as much as I did. I never understood why people thought I faked my emotions or called me dramatic because I thought I was fairly mellow. I was also shocked when I asked people about their reactions, which seemed strange at times, at how many people seemed to lack the ability to empathize with those who were different from them.
Whenever I spoke up about hardships, I was told I was snobby, bratty, whiny, annoying, and a perfectionist. When I didn’t speak at all, I was told I was too shy, I needed to smile more, I was being rude, I was stubborn and unruly.
School isn’t a safe place.
In school, I was victimized by teachers from verbal to physical abuse that occurred from no less than seven separate teachers (that I can recall). I was abused by my peers and trusted adults. I was assaulted on many occasions.
Adulthood isn’t easy either.
And in adulthood, I was bruised by an employer attacking me and locked inside a safe.
I had a professor take a photo of me for a school newspaper and tell my undergrad research peers he was going to keep it for his personal collection as he zoomed in on my breasts and laughed as he declared I’d be more successful in the adult industry than in science.
I had an employer give my phone number to a male colleague who then harassed me to go out with him, and I eventually had to quit due to the harassment.
I had a boss hang a Barbie doll from a noose in my workstation and told me if I annoyed them too much, they’d make sure it wasn’t a Barbie and would be me.
I had an employer suggest that I should sleep with a superior to get a $1.50 raise per hour and that it was a pretty good deal I should take.
And yes, I thought all this was normal.
I chalked it up to being a woman, to having horrific bosses and awful teachers, and I never felt sorry for any of it because I was sure everyone had the same experience. The workplace was awful, and abuse was to be expected.
I thought everyone was hyperlexic or had a precocious artistic ability. My family even took drawing samples to the doctor to find out why I could draw so well. He said I was just gifted and to ignore it.
I was kicked out of piano lessons because instead of learning to read music, I simply heard the song and repeated it by ear on the piano, and no formal teacher wanted anything to do with me. I’d even prove I wasn’t reading the music by hanging backward over the piano bench, which was very disliked by teachers who thought I should be a prim and proper little girl.
I thought everyone was overwhelmed and experienced extreme burnout and that we all had a complete loss of skills (like cooking) and motor functions (the ability to hold a cup) during those times and that sometimes daily overwhelms were completely normal.
I thought everyone agreed that even gray days were too bright, and clothes were uncomfortable, and experienced echolalia in their minds.
I never realized I stimmed or didn’t make eye contact until my first boss told me I needed to look people in the eye throughout the entire interview and shouldn’t spin my ring around my finger. I thought it was a dumb rule, but if she told me I needed to do it, everyone likely needed the same instructions.
But, it turns out that this is all a very brief and surface-level response to how I experience autism, that very “scary” thing.
Since being diagnosed within the last year, I’ve been elated to be autistic.
This doesn’t mean I’ve just now become autistic. I’ve always been autistic but never had a word to describe how I perceived the world.
I’ve recently discovered that I am not a problem. How I feel is valid, and how I process sensory information is okay. I’m allowed to have accommodation, and it’s okay that I’m not perfect. No one is.
I’m not dumb. I’m not broken. I’m not a sub-par human. I am not other than.
Most importantly . . . I am not scary. Nor are more people in the world like me.
I am neurodivergent.
I have ADHD and Autism, and I’m happy that I do wholeheartedly.
I find it reassuring that other people experience the world similarly to me, and it brings me great joy to know I’m not alone despite the drawbacks autism can have. If I had to choose, I’d still choose to be autistic.
Without AuDHD, I wouldn’t be me.
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