How Night of Too Many Stars is ignoring half the spectrum

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No one on my row showed up. I’m that lame.

I had the wonderful opportunity (and early birthday present) to attend in New York City Jon Stewart’s Night of Too Many Stars benefit for autism (through NEXT for Autism). I was pumped to be attending a show that featured so many of my heroes in the field of sarcastic media – Stewart, John Oliver, Jordan Klepper, Colbert, and Samantha Bee. And in the very year I got my own autism diagnosis! It was a dream come true.

Or so I incorrectly assumed.

Once there I realized that there were no Aspies in the crowd. This was not for us; it was about us. It was all dudes who wanted to see Stewart back on stage and very rich, very white Manhattanites who were going to another charity function to assuage their privileged guilt. Before the ACTUALLY LIVE (not “taped live” which is an oxymoron) broadcast on HBO began there was an auction for various dumb prizes like sitting underneath Colbert’s desk with Jon Stewart during one of his monologues.

I had a bad seat where I could barely see the stage, The Roots not at all, and yet no one on my row showed up until over half-way through the program. I can see that happening if you’re going to your local symphony and dinner runs late, but this is LIVE television! What the eff? I was sure to give them dirty looks when they made me move from the end of the row that could see the stage. I grumbled something like, “Glad to have you join us.”

Millennials, am I right?

 

Everything got off to a weird start as Stewart was carried onto the stage by a guy who was supposed to be a CGI actor playing a dragon. HBO, Game of Thrones, get it? Olivia Munn seemed to get thrown by the live-ness of the event and flubbed her lines. In fact, everyone was nervous and awkward. Even the seasoned guys.

Welcome to my world, I guess.

The format was thus: A famous person would give a little speech or do a sketch and then they would show a touching video about people living on the spectrum and the struggles their families go through as they changed the stage and got the following act ready.

It went OK until they decided to put an actual autistic person up there. Carly Fleischmann is the first nonverbal autistic talk show host and she’s amazing.

Unfortunately what happened next was indicative of one of the problems autistic people face when going out into the world. They didn’t fully plan for her. At the beginning of the telethon they dropped a lot of metallic confetti on the stage and some guys swept up most of it as a video played. But not all of it.

When they rolled Carly out already at a desk, Stephen Colbert was going to let her interview him. But before the questions could start, Carly got up and began to pick up the missed scraps of confetti. The audience and Colbert seemed confused and embarrassed, but I knew what was happening immediately – she’s got OCD features and couldn’t NOT pick up the random scraps. They were sort of bothering me the whole time as well.

She was taken off the stage and an emergency, Oh no, this is a LIVE show, filler was put up. Jon Stewart later came up and spoke for a minute to the audience about how she had a “thing” about paper and picking it up and tearing it into pieces. He called himself an asshole for not being more thoughtful.

I don’t think Jon Stewart is an asshole for the record. He’s one of my all-time favorite people, in fact. He just doesn’t understand the need to ask autistic people, especially when you are bringing them out for a stressful live performance, about ALL their “stuff.” Triggers, obsessions, sensory sensitivities, and phobias. For instance, I was not really accommodated at the venue either.

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Like the “deadlights” in IT.

During show they occasionally cut to the audience for reaction shots, so they had these insufferably weird lights glaring on us through most of it. I missed a lot of the show and being able to see well because I had my program up to block the very painful glare. It didn’t seem to be bothering anyone else though. It made me increasingly upset as the show wore on. That’s the reason I was in the bathroom for Mulaney. This lack of consideration just highlights the fact that the organizers had no expectation of anyone on the spectrum being in the audience. Because why would a disabled person want to attend a cool benefit for people like themselves? Because they don’t consider people who can go to things to be disabled.

All in all, the autistic people they featured were “people with autism” as the caretakers of the profoundly affected and nonverbal would have you believe we prefer to be called. The tone was vaguely insulting and very pitying. Jon Stewart referred to us as “whole people” and I guess it’s hard for those not familiar with the hidden depths of the autistic mind to grasp that we are “in there” whether we are verbal or nonverbal. But still. It played to the biases of the allistic audience rather than having a verbal autistic person come up there and speak to them about the range of people on the spectrum who need support.

The autistic people who were being helped by this benefit were clearly mostly young and always visibly autistic. No verbal people were featured. There are hundreds of thousands of people with autism out there who are able, even forced, to hide our more visible symptoms and neuromotor agitation through training and powerful pressure on all fronts to seem “normal.”

We are also the spectrum people who are invisible to charity organizations. No one cares about Aspies. Especially if we are intellectually smart, but lack cognitive and social skills in other areas. Very recently there was a TEDx talk by Carrie Beckwith-Fellows about how smart, verbal autistic people are dying needlessly – because we are forgotten, no services are provided for us, and we take our lives. Please watch the below video if you have the time.

Here’s an excerpt from a recent article about our high suicide rate (emphasis mine):

“The researchers reported suicide was one of the leading causes of early death among people with ASD [At least 16 years earlier]. In fact, the researchers concluded suicide rates of people with ASD who had no cognitive disability were nine times higher than the general population. Previous studies had shown that 30 percent to 50 percent of people with ASD have considered suicide, according to a report issued last week by the nonprofit organization Autistica.

The suicide rate is higher among girls with ASD and people with milder forms of the condition. The experts said that’s because this group are more aware of their condition and possible difficulties assimilating.

In addition, bullying can be a daily occurrence for people with ASD. Anxiety and depression are common responses to such treatment. Both of those mental health stresses are leading factors in suicide.”

People who were formerly diagnosed with Asperger’s Syndrome are dying in droves. The lack of support, recognition, and understanding is literally killing us. I know of no one in my life on the spectrum who has not been suicidal more than once. Including me. I have no proof of this because no one has done the research yet, but we are also dying early from lack of medical care (no insurance, anxiety about doctors), drug abuse, alcoholism, and the effects of neglect (homelessness, accidents while living alone). And, just as a side note, over 80% of spectrum women, even the verbal ones, are sexually abused in their lifetime.

Including me.

The world is a precarious place for autistic people no matter the age or ability level. I wish people cared what happened to us enough to include all autistic people in fundraisers, telethons, and discussions.

P.S. I am thankful that John Oliver brought up the problem of police brutality and Edie Falco mentioned that autistic kids at some point become adults. But here was the biggest nod in our direction:

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I’m telling you – those lights were terrible.

 

Author: scidoll5000

Female genius and American essayist.

8 thoughts on “How Night of Too Many Stars is ignoring half the spectrum”

  1. As a parent of a son with aspergers, who could probably be diagnosed in the spectrum myself, I hope you don’t use your diagnosis as a crutch. With my son being officially diagnosed I have found there is a ton of support in the local school system as long as you are proactive in seeking it. Are there issues with bullying and social awkwardness? Absolutely. However, I don’t see a solution in events like this where people with means but no real connection get together to pat each other on the back. My experience has been that you have to learn to adapt to the world in which you were born. Does it suck? Yes. However, in the real world you can’t always use a crutch and success is measured by your ability to adapt to your surroundings as opposed to trying to force your surroundings to adapt to you.

    Liked by 1 person

    1. I do see your point, but as a woman on the spectrum who was born in the 1970s, my experience is very different from a young man with Asperger’s today. I was never protected or accommodated in any way. I, like many older spectrum females, spent my life accommodating others and hiding my anxiety and symptoms. I became very mentally ill by the time I was in college and the repercussions are still with me at 40. I can go no further in my life without others making some sort of attempt to understand why I’m different, if not make some accommodations. That being said, I was a bit harsh about the venue, but I was trying to make the point that autistic people have an obstacle course to navigate when we go out and participate in society. Thank you so much for being a reader and giving feedback!!!!

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    2. I’m HFA. It’s only earlier this year that I realized that I need support in doing successfully at work. That’s why I blog about my autism challenges. Hopefully, being specific can lead to better support. Before that, I didn’t know that sensory overload was significant and didn’t wear hearing protection. I seem to always have trouble with performance. Maybe difficulties describing emotions and “passing” can mask sensory overload, autistic burnouts, misinterpreting social cues, lack of warm ups, executive dysfunction, and the effects of routine changes. “Passing” might make them subtle to observers. They might instead see that the autistic person wasn’t gifted in the field rather than the person’s weakest links. It’s also possible that different people experience them differently. Support isn’t a crutch is it? I thought we use support to be more successful at school, work, next chapters, etc.

      Liked by 1 person

      1. Even being just a little bit odd on the job can cause co-workers to speak less to you and make those relationships rocky from the start. And, no, asking for support or some accommodations (at the beginning of a job) is not “leaning on a crutch.” People who don’t understand that we need certain things to be successful will often get onto “disabled” people for “using it as a crutch,” but that’s because they are assholes. Thank you for reading and responding, Han-Lin!

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      2. Sometimes, I feel that it may be better not to “pass”. Maybe I should experiment with a day of not “passing”. We have two circuits for controlling our facial muscles. One’s voluntary and the other’s spontaneous. Autistic people tend to have abnormal and exaggerated facial expressions possibly because of the difference in hard wiring. Greater connectivity might explain it. I imagine that quitting “passing” can be difficult. We’re so used to suppressing facial expressions that’s spontaneous. We may find humour in things that non-autistic people don’t have and vice versa. Won’t it be awkward to act like a different person overnight? I think it would be ideal if the job doesn’t require “passing”. Would not “passing” increase energy levels since it uses executive function? Would it improve our moods too?

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  2. I feel the event is heavy in irony for Autism, low in making a difference. To the comment from Pat – there is no equality in either provision or understanding of Autism. I have worked in a specialist ASD environment and was appalled at the lack of understanding of Aspergers and the almost routine bullying of students. A boy I heavily supported – almost textbook Aspergers, was the victim of psychological abuse from both his mother and the school/residential care home. He was (is)extremely bright. Problem with many with Aspergers particularly at young ages – they see so much more and have a perception that cuts through adult subterfuge. It makes them dangerous in a potentially abusive enviornment of an isolated SEN school. I worry for him and others like him. It is a lonely path to walk. You also have to think of the huge diversity within Autism – the boy I supported should never have been put in that environment of a SEN home/school – his intellect needed the mainstream world to absorb. You are lucky with the provision and understanding your son has received – for others it is a heartbreaking journey of ignorance and abuse. Parents fight hard to get statements for their children to access better support and the sick reality in the UK is that it gets channeled into for profit run schools run by companies that see Autism as lucrative. The school I worked in was cutting everything, including food for children whilst building up its profit margins to be traded on the stock market. So be thankful for what you have got and I am sorry to say to scidoll5000 understanding is still not forthcoming for this generation any more than it was for yours.

    Liked by 4 people

  3. We tend to see the autism spectrum in the wrong way. Like high functioning through low functioning. That may make it seem surprising when an HFA person has an autistic trait that’s worse than that of an LFA person, or when an LFA person has an autistic trait that’s better than that of an HFA person. The multi-dimensional way of seeing it is more accurate. I find putting things in my own words very difficult and people seem surprised maybe because I look non-autistic. I might be relying on rote memory for writing and letters. That’s probably echolalia or scripting. The problem of viewing the spectrum that way is that it can cause a lack of support for those with HFA which ironically may make it even harder than LFA. I watched a video about Carly Fleischmann. It mentioned that when a therapy didn’t work, they kept moving on to the next one until it worked.
    https://themighty.com/2016/05/rebecca-burgess-comic-redesigns-the-autism-spectrum/

    I did research recently about autism and blogged about my challenges related to it.

    Liked by 1 person

  4. Reblogged this on Laina's Collection – sharing Aspergian/autistic writing and commented:
    GREAT post! 🙂 I strongly stand behind the “Nothing About Us Without Us” philosophy. It disappoints me that to this day, various groups are meeting and benefiting financially in our names, without giving consideration to our needs so that we can at least attend these events without frying our nervous systems. Even if we’re able to attend, such oversights can discourage us from attending again, in the very place in which our voices and presence are needed most. It’s a shame, really. I hope that more organizations take US into consideration when planning for future events. Bravo, luv ❤

    Liked by 3 people

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