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October 1, 2020

Autism & the “R-Word”: a Delay in Progress & Representation.

 

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It all began with a throwaway line at the dinner table: “You know you’re autistic, right?”

That was my mother, who, on my 13th birthday, dropped a metaphorical bombshell.

Before that, I had known I was different through interactions with both people my age and adults. For a few years, I built numerous theories, many of which could, when looking back, never see the light of day. However, of every conceivable hypothesis explaining my difference, this would’ve been at the absolute bottom of my list.

I had heard of autism before. I’d even seen autism firsthand and commented about it ignorantly. For many years, I thought that those with autism would forever remain silent to the world, demonstrating feats of artistic creativity, mathematical wizardry.

I’d even said that I was glad that I wasn’t autistic, claimed that there was no possible way. The people with autism that I had met were silent and had a challenging time adjusting to the world around them.

That didn’t describe me. Not for a second. But that was before I definitively knew. Not just about my autism, but about how it is a spectrum: not one thing in particular, but varying from person to person with a few commonalities.

Over the next nine years, I would re-examine my entire childhood and realize that all the clues had been right in front of me. The constant visits to UPMC in Pittsburgh, the books on facial expressions I was consistently confused by in both function and purpose, interactions with some of my teachers. All the pieces were there, and it was so blatantly obvious.

However, I had fallen into the same trap most of society today falls into: relying upon the clichés and stereotypes not only introduced in the media but also reinforced by the numerous “advocacy” groups claiming to represent the autism community.

These groups, such as Autism Speaks, The Autism Society of America, and the Autistic Self Advocacy Network, take steps with the intention of helping people within and indirectly connected to the community. However, these often backfire and actually reinforce the negative stereotypes that decrease the chances of better understanding the autism spectrum.

If organizations such as Autism Speaks dictated much of the perception and solutions in “helping” those on the spectrum, which they do, they would say autism is neither difference nor disability.

Instead, autism is a disease that can enable the affected individual to be blamed for everything, including failing marriage, financial ruin, and not meeting unrealistic, idealistic expectations that parents set in the first place.

In other words, autistic people are merely props for people—parents—to feel sorry for themselves. Autism is a disease that afflicts millions, and Autism Speaks is helping to find research that will come up with a cure.

However, it isn’t just these groups that have contributed. As the saying goes, mass media is a reflection of society.

Compounding the perception received from Autism Speaks, you would also assume that most autistic people are non-verbal, prone to specific tics, and trapped inside their heads without any sense of empathy.

Additionally, many are also savants, or super-geniuses, able to make up for any shortcoming in their EQ with their vast knowledge on one particular subject. One might be able to count cards, memorize a phonebook, and calculate square roots faster than a calculator. At the same time, another may have an entire surgery encyclopedia in his head.

And then, there are the numerous jokes made on social media. Whether it be the “autistic screeching” meme made famous in late 2016 through memes and ridiculing anti-Trump protestors or even the more recent TikTok Autism Challenge, autism is, to many, the ultimate punchline, something to be mocked or laughed at instead of being understood.

Now, I’ll admit, some elements of these autism stereotypes are based in reality. We’ve all seen and experienced it with our own eyes. There are, for the most part, physical tics, which depend from person to person. I’ll admit personally that I spend a lot of time inside my head, chasing my thoughts as they go whizzing by.

However, the rest of the description above can fall into two categories: bald-faced lies that are simply not true, or characteristics actively recognized as stereotypes, representing the minority.

The lies are pretty easy to spot: autism is not a disease, and those with autism are not victims. Not in the least. It cannot be caught, transmitted, or spread through contact. You cannot become autistic because of the MMR vaccine, nor die from autism. In fact, the “epidemic of autism” term that has been quoted ad nauseam is nothing more than a misleading sound bite.

Autism is not one specific disability. Instead, it is a spectrum, varying from person to person, depending on numerous factors, both controllable and uncontrollable.

Many of the stereotypes of autism described above fall within what is called “low-functioning autism.”

Clinically, anyone with autism with high difficulty communicating, being inflexible in behavior, and having an extremely challenging time both adapting to change and focusing can be considered low-functioning.

It was also established in the American Psychiatric Association’s DSM-4 handbook that having an established IQ of 70 or lower was a significant criterion.

According to the CDC, 31 percent of those diagnosed on the spectrum, or about 1.9 million Americans, are low-functioning autistics.

Now yes, that is a lot of people. However, the vast majority of those on the spectrum are what is called “high-functioning.” Those with average or above-average IQs who can communicate with others, are flexible, and can adapt to change and focus properly.

So, 69 percent of those on the spectrum (about 4.2 million Americans) are people whom you would never suspect of being autistic because the “signs” are not clearly as evident. On top of that, high-functioning autistics are also highly capable of empathy and can go through most of ordinary life without much difficulty.

And then, there is that infamous savant syndrome. That syndrome popularized in films and television through characters such as Raymond Babbitt in the 1988 film “Rain Man” and Dr. Shaun Murphy on ABC’s “The Good Doctor.” While impressive, it is essential to note that not everyone on the autism spectrum is also a savant. In fact, savant syndrome is only present in 10 percent of all cases of autism, both low and high-functioning.

The chances of walking into a room full of the entire United States population and finding one person on the spectrum with savant syndrome are infinitesimal. More specifically, it’s about a 0.002 to 1 chance in favor, which is pretty slim.

~

As stated earlier, the media is always a clear reflection of how society perceives the world.

Part of the reason why groups such as African Americans and LGBTQ+ could be demeaned was that the media were able to create stereotypes that transformed them into two-dimensional characters.

To be widely accepted by a vast majority of society, autism would need to be represented for what it is: a spectrum characterized by common traits such as general social awkwardness. Overall, autism would need to be an aspect of the person’s life rather than the whole personality.

However, for the longest time, this has not been the case.

Most people remember “Rain Man” as the eye-opener to the autism world. After all, the character was not only played by iconic actor Dustin Hoffman, it even netted Hoffman his second Academy Award for Best Actor. However, this was not the official introduction of autism into the world.

It was the controversial series finale of a television show that created the bar that every portrayal of autism has passed. You may even remember the show and its infamous ending because it created one of the worst and most tiring television tropes. The show: “St. Elsewhere.”

The series finale revealed that the entire show and the characters in it all came from the mind of a child, holding a snow globe. That child, Tommy Westphall, would later be confirmed as a low-functioning autistic. His father established Tommy as a burden because of his autism in the show’s final line: “I don’t understand this autism thing, Pop. Here’s my son, I talk to him, I don’t even know if he can hear me. He sits there, all day long, in his own world, staring at that toy. What’s he thinking about?”

Therefore, having the “Rain Man” portrayal of autism follow up “St. Elsewhere” was like following up a five-year-old’s rendition of “Twinkle, Twinkle, Little Star” on recorder with a full orchestra playing “Ode To Joy.” Both music, but one clearly superior.

Hoffman had rigorously prepared for his role in “Rain Man” with the Autism Society of America, in particular with two of its founders, Dr. Ruth C. Sullivan and Dr. Bernard Rimland. Additionally, the character of Babbitt was inspired by real-life autistic savant, Kim Peek. As a result, he was able to, for the most part, portray most of the elements of autism that, for its time, was the excellent introduction that “St. Elsewhere” just couldn’t accomplish.

However, even in that portrayal, some flaws now date the performance. They would, again, fall into two categories. The first: inaccuracies and stigmas that, even then, were invalid and incorrectly portrayed autism. The second: aspects true for one type of autistic person but would become the stereotypes for every other character over the next few decades.

Don’t get me wrong—Dustin Hoffman’s performance was, and still is spectacular. Considering the portrayals of autism that could’ve happened, this is still relatively harmless. It all comes down to the writing and not the interpretation.

First of all, the savant syndrome. As stated previously, it occurs in one percent in all autism cases. However, “Rain Man” began the stereotype of everyone with autism possessing a special skill or talent such as memorizing a phonebook, counting cards, or calculating the square root of a number in their head with the accuracy of a pocket calculator.

To this day, the film is referenced as shorthand for someone with savant syndrome or someone whose mental abilities are way above average. If that does not scream impact, I don’t know what does. Granted, that information wasn’t common knowledge in 1988, so, “Rain Man” gets a pass on that.

It all comes down to what mass media did in the following decades to reinforce that fact and express how rare the ability is. The media, as seen in society’s perception of autism, failed spectacularly. And, the one aspect of the film that should not get a pass is the character of Raymond Babbitt being institutionalized at the start of the film, with him returning willingly to the institution at the end.

While it is true that, for many decades, autism was treated as a psychiatric disorder and those on the spectrum were basically shunned from society as a result, the practice of institutionalization was gone by the 1980s when doctors realized that autism was not a mental disorder like schizophrenia, which autism had been undifferentiated from for over 30 years.

The fact that Raymond Babbitt returned to the institution can imply a sense of familiarity that, as a basically low-functioning autistic, he would be comfortable with. However, there is another meaning, one that much of the autistic community is not a fan of: the acceptance of institutionalizing rather than getting out into the world.

In reality, those on the spectrum who are low-functioning would live in communities with others, as demonstrated in the 2015 documentary, “Life, Animated.” The ending of “Rain Man” stuck with a status quo that simply was not true and was actually even more harmful.

For the next few decades, the portrayals of autism would be somewhat similar with some minor discrepancies. Look at characters such as Maurice Moss on “The IT Crowd,” Dr. Sheldon Cooper on “The Big Bang Theory,” or even Abed Nadir on “Community.” All three characters, by the way, have never been confirmed to be on the spectrum. However, in the case of all three, it is heavily implied.

Hence, another issue: with many clearly autistic characters, there has been little initiative to label them, even if the characters are three-dimensional. Most importantly, they are not defined by their autism, but their general genius and integral placement in the plot.

Even when a character is confirmed to be autistic, they are seen as an object of pity, with propaganda placed by organizations such as Autism Speaks, making them the source of anger or frustration.

Look, for example, at the character of Max Braverman on “Parenthood,” at least within the first two seasons. The parents are in support groups trying to cope with the fact that their son is on the spectrum as if he had a deadly disease. Yes, it would impact him socially, but addressing the issues instead of self-pity would be the most effective way to build Max’s character.

The good news is that the way autism has been portrayed for decades is finally starting to change and slowly go more toward reality.

Characters such as Julia, the first autistic character in the 50-year history of “Sesame Street,” or Dr. Shaun Murphy, the titular “Good Doctor” on the ABC’s primetime powerhouse are starting to show autism at all ends of the spectrum.

Even more importantly, autism does not define either one of the characters.

The “Sesame Street” cast even established, in Julia’s debut, that autism is different from person to person, which is probably the first time this fact has been reinforced in the media.

Julia is shown to be your average four-year-old kid who enjoys life and can communicate with others. She is also established as a highly talented artist for someone her age. Yes, she has sensitivity issues that are common on the spectrum, but overall, she is not hindered by autism.

The character of Dr. Shaun Murphy takes a different approach. They make his autism an integral part of the plot, in particular the concerns of the board of the San Jose St. Bonaventure Hospital. His abilities and dedication as a surgeon are never in question. He can visualize a problem and come up with a solution, making his skills invaluable.

The main concern is how he would be able to communicate with patients due to his being a blunt person who never sugarcoats the truth. While he does have trouble, often breaking the rules by accident, he slowly gains the respect of his peers, who stand up for him when he is picked on because of his autism. He even falls in love and dates—something, which again, is unfamiliar territory in media or in real-life with those openly on the spectrum.

Sure, the show does demonstrate the savant syndrome stereotype. Still, it never labels him as a savant and explains that he is a smart person in an environment full of them. This is even demonstrated in the show’s Season 2 finale when Shaun’s way of thinking is replicated by a close friend to save his life.

With these two characters, the correct way to portray autism is slowly becoming more and more defined. In time, the stereotypes will, like the African American and LGBTQ+ characters in decades past, fade away. When it happens is unknowable. However, it is already beginning, and that’s a start.

~

Despite the positive media developments, these are all only so recent that it is almost impossible to say that there has been a full change in perception.

The impact of the media never officially identifying characters as being on the spectrum translates into real life with the older generation who could make a tremendous impact if they had gotten diagnosed.

Think about it: we’ve heard the jokes and suggestions about how Steve Jobs, Bill Gates, and Woody Allen are all on the spectrum, but none of them have officially been diagnosed. These three are among the most influential minds ever and have each heavily redefined their industries and our lives. If they were to come out as autistic, it would prove to be massively influential to the community. It would prove that autistic people can be anybody, do anything.

The media, however, is not the sole factor in autism’s perception. The health and awareness communities each have equal footing and responsibility in getting people to realize the truth about autism, and these groups have utterly failed in this responsibility, creating a general consensus that has already had devastating consequences.

The general consensus is dictated by the actions of people, and, through these actions, one thing is clear: autism is, to many people, a fate far worse than death.

Let’s travel back in time to January 5, 2015, when the California Department of Public Health was tipped off that an 11-year-old had a potential case of the measles. Upon investigation and confirmation that the patient tested positive for measles, they discovered that she had been exposed to the virus at a location where 65,000 people visit every day: Disneyland.

That same day, the CDPH received word of four additional cases. By the time the CDC put out an initial report in February, 125 cases were reported, with 110 of them coming in the state of California alone. Of the 110 patients, 28 of them (25.5 percent) were intentionally unvaccinated due to personal or religious beliefs.

Now, I know that personal or religious beliefs could mean absolutely anything. After all, there are plenty of people who decide not to vaccinate their children for a plethora of reasons. All they would’ve had to do was sign a personal belief waiver that would have ordered the doctor to not vaccinate the child. Any vaccinations would, therefore, be in violation of the First Amendment, which allows freedom of religion.

However, further investigations uncovered the majority of people who signed the waiver did so with the personal belief that administering the MMR vaccine would make their children autistic.

Funny, because in 2015, the study that had “proven” autism caused by the MMR vaccine had been disproven since 2010.

It was also retracted by the Lancet medical journal (which had initially published the study in 1998) and exposed as a fraud. The study’s leader, Andrew Wakefield, was forbidden to practice medicine and was exposed as someone who had written the study for financial gain.

Numerous peer reviews had all proven the same thing: there is no link between autism and vaccinations. None at all.

If you want a statistic that makes you even more convinced: with or without vaccinations, the United States had its first death from measles in 2015, the year of the Disneyland epidemic. This was the first death from measles since 2003, an achievement considering that measles had been declared eradicated by the year 2000. Of everyone diagnosed with autism, the number of people who have died with autism as its direct cause: zero.

So, apparently, it’s okay to contract a harmful disease that not only can kill, but is also easily preventable in the first place. However, an autism diagnosis? That’s just too far. It’s a fate worse than death. Hardly.

So, in 2010, what were autism groups saying? Well, the Autism Society of America is well-known for its anti-vaccination stance, which took precedence over the study.

And what about Autism Speaks, the largest autism advocacy group in the world? Well, in 2010, even as the Lancet and the overall scientific community retracted the notion of the MMR vaccine causing autism, this was the group’s official statement on the matter:

“It remains possible that, in rare cases, immunization may trigger the onset of autism symptoms in a child with an underlying medical or genetic condition.”

The group had placed high priority and a vast majority of their research funding into thoroughly investigating the matter, continuing even after the retraction by Lancet.

“Funding such research, in addition to being wasteful, unduly heightens parents’ concerns about the safety of immunization,” said Dr. Eric London in a 2009 interview with Science Magazine. London is a psychiatrist and chief science advisor for the New York State Autism Consortium.

Yes, their position is different, and they have officially ruled out vaccinations as a cause of autism. However, they made the policy change in 2015 after the measles epidemic at Disneyland. The reason, according to Autism Speaks’ own spokesperson, CJ Volpe: “The updated statement was issued this week to reiterate the importance of vaccinations in light of the measles outbreaks.”

And people wonder why there is still so much ignorance and stigma around autism. The people who should be dismissing innuendo and hokum, instead decide to entertain the possibility, even risking lives and overall common sense.

~

There needs to be at least one organization keeping their fingers on the pulse for any minority group in the United States.

To guarantee success, the organization needs to stand for fairer treatment and speak up when the standard isn’t met.

For the African American community, there’s the National Association for the Advancement of Colored People (NAACP). For the LGBTQ+ community, there’s GLAAD. And for those on the spectrum?

Well, the truth is, there is none.

Sure, there is an argument that Autism Speaks could fill that role. However, at the rate the organization is growing, and without a massive image change, this will most likely never happen.

While the group claims to be helping those on the spectrum, the only group they’re helping is parents who don’t know how to cope with the fact that their children are autistic.

Their track record on every aspect of the community is so abysmal that many on the spectrum, including myself, simply do not trust them to act in the community’s best interest. However, there really isn’t much of a choice.

Additionally, for a group called “Autism Speaks,” you would expect a majority of its major decision-makers to be on the spectrum. Of the 29 board members, there are only two who are on the spectrum.

As the largest group who are literally the financial godfathers when it comes to research, saying that you don’t support Autism Speaks can be a death sentence.

Look at Sesame Street, for example, who had a partnership with Autism Speaks, and another group, the Autistic Self Advocacy Network (ASAN).

The ASAN is, like Autism Speaks, an autism advocacy group. Its reputation and board members, all of whom are on the spectrum, makes the group far more reputable in the eyes of the spectrum community. However, it is difficult for the ASAN to overtake Autism Speaks’ global reputation. It comes down to two key factors: its overall reach in the United States, and Autism Speaks’ noticeably higher revenue.

Initially, the two organizations worked together without incident, helping in the research and creation of the aforementioned Julia character, which has become a massive success in raising awareness.

This could have been a massive boon for Autism Speaks, creating a new reputation as a group that could be trusted by the spectrum community. However, in 2019, the Autistic Self Advocacy Network and Sesame Workshop ended their partnership.

This followed the placement of Julia in an Autism Speaks campaign that, amongst other messages, heavily implied parents go through the five stages of grief when they learned of their children’s autism.

Sesame Workshop had a choice. They could have sided with those on the spectrum against fear-mongering or could’ve gone where the money was. In my view, Sesame Workshop chose the money.

The organization isn’t without controversy. This is despite the ASAN being more reputable according to those on the spectrum and it being closer in structure to the NAACP and GLAAD than it is to Autism Speaks. This includes a social media battle with actor William Shatner in 2017 after he came out in support of Autism Speaks and reports of general harassment against other activists.

Even if the ASAN got past these controversies, it would take a lot of work to get their name out, especially when the organization, in comparison to Autism Speaks, has so little money to spend. The less money an organization has, the more you would never have heard of it. Autism Speaks has more money, so, they are the dominant voice and the ultimate responsibility.

Despite their position, though, they fail at every possible level, making their own incompetence the reason they cannot be the watchdogs of the spectrum community.

~

 

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There is much that needs to be done, that is for certain.

To ensure that people on the spectrum are not seen as punchlines or stereotypes, but rather as people, radical changes need to be made.

Whether it is autism advocacy, the perception of the media and general society, or even the scientific community discovering paradigm shifters above autism every day, change is needed. This is not the type of change that can be solved with a simple fix, either.

Autism Speaks would need to carefully re-evaluate their language and purpose. If they want to be a group that treats parents and the families of those on the spectrum as victims, then they have every right to do so. Just change the name and make it clear and leave those on the spectrum alone.

If Autism Speaks genuinely wants to speak for autism, they’ll need more voices on the spectrum. They need more board members who understand the general difficulties and can talk about them. Those who can push past the stereotypes and show that autism is difficult to live with is just a difficulty like any other in our lives.

The media needs to slowly wean off the tired clichés of non-verbal, low-functioning autism with the savant syndrome intact. If they want to show they care about autism for real and not to increase ratings, instead, focus on characters who are openly out on the spectrum but are not defined by it.

Many on the spectrum appear normal because the majority of people searching for autism look for exaggerated stereotypes. Many on the spectrum are, in reality, not those stereotypes. They are perfectly normal people who just want to live their best possible lives.

Finally, the scientific community: it is their responsibility to ensure that everything new we learn about autism is peer-reviewed and non-harmful. The last time that didn’t happen, there was a measles outbreak at Disneyland. A disease that was declared eradicated in 2000 is now back with a vengeance. It is their responsibility to share the truth about autism and not what people want to hear.

And, to the public, remain open-minded and use your head. When a study on autism shows a connection to vaccines with basically unsubstantiated claims even back when the study was first published, think about it. When that study is later proven to be a fraud, again, use your head.

The fact that people still believe the MMR vaccine causes autism, over a decade after the study was retracted, tells so much about the amount of fear parents have over basically nothing. All it needs is a spark to override any and all common sense.

The good news is that this type of change is happening every day. Some people are realizing the futility of organizations and are going solo to ensure that people know the truth about autism. You may even know some of these names: Dr. Temple Grandin, Paige Layle of TikTok fame, Daryl Hannah—the list can go on and on.

Since I learned about my own diagnosis in 2011, I’ve even done some work with autism activism groups that, for the most part, have done a lot of good. Working with groups such as the A.J. Drexel Autism Institute, the Drexel Autism Support Program (DASP), and the Eagles Autism Challenge has demonstrated how rewarding advocacy is. Advocating for others by being me has shown me how much even one voice can change things.

However, it also made me realize one thing: I’m tired of following.

It has been rare that, on my own, through my own effort, I have spoken up about autism. I have noticed many around me claim to be activists for the spectrum, choosing to stay silent and let the national organizations speak for us. The only problem is, they’ve failed.

Now, I have decided it is my turn to lead. It is my turn to show people the truth about autism. The good, the bad, the ugly. Everything.

It is no longer enough to just be an advocate, to be a follower in an organization. Until national organizations, the scientific community, and the media decide to get their collective acts together, it will not be enough to stay a mere advocate. It is now time to become a warhorse, but not just any warhorse.

I am The Autistic Warhorse.

I can still hear that question, which was first asked at the dinner table 10 years ago.

“You know you’re autistic, right?”

I know. And now, it’s time to make sure others know as well.

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