Archive for the ‘advocacy’ Category

People with Autism have such narrow interest. Growing up I only played four different sports because I simply had no interest in cricket or Polo. I didn’t even compete in diving, talk about a narrow focus. This is probably to my detriment and I would be a more well-rounded person, if my interests were more diverse say La Vie. In addition, I only write creative non-fiction and stand-up comedy. All the other writers are like “Would it really hurt you to write a poem every once in a while or even a sketch, you are so boring!” Someone could argue that we don’t have narrow interests we have tastes and preferences, but that is merely a sign that we are denial of our Autism.

The DSM 5 list is also bang on when it says that we like engaging in repetitive behaviors. Fortunately, Society can be so accommodating to our need. Every day we wake up, go to work, come home, and go to bed. I couldn’t imagine what life would be like, if sometimes, I came home and didn’t go to bed, or if I only had a job to go to some of the time while the rest of the time I just got up and watched television all day. I mean would it kill me to dinner at 4pm or 4am instead of being so darn predictable? I mean PLEASE! I even catch the same bus to work and never really vary my routine by doing something different like, you know hang-gliding or dogsledding to work.

Another hilariously autistic characteristic is our poor-hand-eye-coordination. While it may be hilarious to us, it can be a real nuisance to the people around us. I am so glad that giant industries have been created surrounding us such as the Velcro industry. A heartfelt thank you goes out to the shoe industry for giving us so much choice. Phew I thought that we would be stuck with Velcro and slippers, but, boom out comes another kind of slip on shoe called Crocs I don’t know what we did to deserve all of this. I mean, they do realize that we probably make up less than a tenth of the shoe market, don’t they? Either way, I’m not going to complain. There are a million and one other products designed for us that if I had to handwrite a thank you card to each of the inventors or heads of industries it would take me years. Fortunately, someone anticipated how long it would take to write each card legibly with my poor-hand-coordination and designed first the type writer and then the computer and if that wasn’t enough Graham Bell designed the telephone so I could thank each of them personally.

One characteristic that I personally struggle with more than most, is social interactions and communications. I am constantly observing other people to know how to interact. I have been doing dating wrong every single time I go on one. I always put my cellphone in my pocket instead of just putting it on the table and answering texts all night. I have also been watching videos on Youtube wrong. Instead of trying to find videos that I will actually enjoy, I should be trolling around the internet to find videos that I can write hurtful messages about. Trolling and shaming don’t just happen naturally you constantly have to be working at it if you don’t want your skills to get rusty.  Another observation is that it’s almost rude not to slap your waitress on the ass. No matter how old you are, whether your wife or children are there or not, when she walks by your table midway through the meal you just need to reach out and touch her on the ass. Also it is super important to always let people know how busy or tired you are, or people will think you are slacking off and not getting the most out of your day. Thank goodness for my opportunities to observe these individuals, hopefully one day I will be as socially adept as they are.

A symptom of our poor social skills is our struggles with making sustained eye-contact. At the Autism games in a staring contest Kevin Willis once stared his opponent in the eye for a whopping ten seconds. Our plight, however, has received very little sympathy from women. They are constantly making snide comments like “My eyes are up here!” or asking if we are staring at their chests when it is obvious. Don’t they realize the person they are talking to has Autism? They just don’t just realize how prevalent it is and how sometimes every single guy at a party is on the spectrum. The most recent statistics, 1 in 57 people, totally underestimate how big a percentage of the population has Autism I think its closer to 1 out of every 2 people.

 

Well, the fringe festival is over so I am now going to reflect on this amazing experience.
Pre-fringe I sent out all the emails to all of the contacts that Fringe suggested, which was like 4 weeks ahead of time. I thought that everyone would be interested in my story because I am egotistical like that. I have a hard time taking the perspective of others, therefore, when things go badly its because of something I did and when things go well it’s because I got lucky. Nevertheless, in my head the world revolves around me. Therefore, when I did not hear back from anyone other than the Jewish post and Shaw at first I got really discouraged. (I still think the Jewish post, had the best article of the bunch =0 ). Maybe, I had miscalculated and it turned out no one would be interested in the message that I had to say. Maybe, only people with aspergers would care and everyone else would prefer something lighter. This was a stand-up comedy which is light, but also about a weighter topic Aspergers. My blog never had the biggest audience after all. Therefore, I began worrying that my fringe show would be a flop.
Slowly, however, three weeks after I had sent out all the emails, two weeks after I stopped thinking anyone cared and four days before the fringe festival started. I started hearing back from CBC and the Winnipeg Free Press. When CBC first contacted me I was in a hurry and had just woke up from my nap so wasn’t really coherent about what was going on. Therefore, when they interviewed me for the website I was just confused and thought that was that. Then they contacted me again to do a radio interview, at the radio interview they also talked about doing something for tv but when nothing happened that day I moved on. The television department actually contacted me the day before I was performing. On top of that I was still writing my fringe festival show because the original script was too darn negative.
My mom was still convincing me, however, that not everyone would be interested and only people impacted by the disorder would come to my show. On top of that people with Aspergers rarely like to leave their house so I thought my audience would be tiny.
In addition, I had got my tech time wrong and only out of mercy from the tech guy steve who waited late were we able to practice at all. I only knew, I got my tech time wrong because my mom called me on my cell-phone I had been out that day with some people putting up the great posters that Cory Falvo made for me.
The first night of my show I knew was going to be huge because it was all my parents friends who had read the article in the Jewish post and therefore, had come out to support me. Therefore, I figured I’d have at least one packed house and only one packed house. I was okay with that, because frankly I was not that comfortable with my material after writing and learning it all in a week. Granted it was based on my five years of stand-up comedy but everyone told me stand-up comedy doesn’t do so well in the fringe festival. Also, it wasn’t like I was on the pinnacle of Winnipeg stand-up and had already been looked past for many big shows like the Winnipeg Improv festival. As a result, I had every right to be concerned. Forunately, for me there were lots of people who came out to support me. My brother’s friends parents all the way-out in the country even drove in to support me that night.
The next day, was Friday. I was very nervous because my show started at 5:45 and my shift at work ended at 5:15. Forunately the two were very close to each other. Nevertheless, I was very nervous about not having lots of time to prepare, mentally that is, as my show had no props. I was flabbergasted when I got there and there was a huge line-up. The place had sold-out. The show is very strange for an audience member to know when to laugh because at the heart of it, the jokes are about something really sad therefore, it was hard for them to know when it was okay to laugh and not feel like they are laughing at the person with the disability. It is made tougher by my pedantic speech as a result of my disorder. I have faced this challenge often as a stand-up comedian and I didn’t know how this would fare for my show. This ended up not being that big of a problem. Nevertheless, I wasn’t thrilled with how my show went. My general awkwardness at the end of my worked in my favour, however, as the audience loved it. I wrote this off as a freak occurence and that my audience sizes would normalize for the rest of the shows. That my third show no way would anyone come out I mean it was at a god-awful hour of 11pm on a day that had been raining hard and was still coming down hard. Nevertheless, lo and behold this show almost sold-out as well. There were 5 seats still available.

I was a bit worried how, the critics would take it, however, as my show was barely 35 minutes at that time and I said it was a 42 minute show. One critic hated this and gave me a medicore review a 3. The other big critic, however, loved my show and gave me a 5 stars. Which is a miracle, since five star reviews should only be reserved for the best shows like the Hot Thespian Action one or Crumbs. You know, shows that would sell out automatically whether or not they got 5 stars.
After hearing both shows complain about my show being short. My brother and I stayed up late the Saturday before the Sunday show, my 3rd show, and worked really hard to add 5 more minutes. One of the jokes that came out of this session actually became one of my best jokes.
After getting the 5-star review I also got two super generous reviews from complete strangers in the Jenny’s which is the unofficial fringe newspaper. My shows now started selling out really quickly. I could only hope that the message that I was trying to send about people with Aspergers being just as capable and worthy as anyone else, despite having our shortcomings socially was getting through. One show sold out 5 minutes after tickets going on sale I’ve heard.
The final hurdle came after I won patron’s pick. I was going to be going up against the best shows from other venues in the exact same time-slot. Amazingly enough, the press and word of mouth was good enough that it was the only show that sold-out in advance.
The most rewarding part of the festival, however, was not selling out shows but having strangers who I did not know come up and talk about how they could relate to the show and how they too had Aspergers and appreciate what I had done. Some of them even shared their own stories.

In September, the show will air for one night only at the purple room as a fundraiser for Aspergers Manitoba.

Everyone remember the bell-curve from high school and university?? Good. Just in case I have included one below.

bell_curve

Any spectrum is sort of like a bell curve where there is always someone who is better or worse than you are, however, when that spectrum is invisible there is questions of where do fit into it? I always thought I was on the higher end of the spectrum, however; the diagnosis of people being Autistic is much more frequent these days with one in 54 males having it. Therefore, many people who would have been on the border of not being autistic and would not have been considered in the past are now being diagnosed with it. Let’s not discuss whether that is a good thing or a bad thing, because, that is a different debate for a different time. What is relevant, however; is that many of these border cases will be more socially able/gifted than I am. They will have had a rich dating life and will eventually get married and no one would be able to tell the difference between their lives and anyone else’s. I have met several people with Autism but not nearly enough to back up these statistics, therefore, I don’t truly know where I stand anymore. Has the bell curve moved the other direction so that I would be on the lower end of the spectrum? The less independent end? Or has there simply been more people born on the lower end of the spectrum, therefore, my relative place would not have changed so much. I doubt if this latter is the case. I think, instead of the prevalence of most disabilities increasing the only thing that has changed is our ability to recognize and diagnose mild cases. There is also more reasons to come forward or diagnose someone as being on the spectrum since this means that they will receive more funding in the classroom and other areas of their life where they may need extra assistance. In addition, the stigma of being different or having a disability has decreased over the last 10 years than it was before. Do not get me wrong, it is not easy being different as society is not perfect. There are still many ways that life is harder for anyone who is different.

It is interesting, that the best blogs that I have found so far on the topic of Aspergers, have all been written by a mother of someone with Aspergers. For some reason, they have much a clearer perspective about what is going on with us and the challenges we face and are much more eloquent when talking about them than most of us could do ourselves. Is it because our mothers love us more than we could ever love ourselves and they see our strengths and weaknesses much more clearly, while, we only focus on our temporary setbacks and can’t see the trees for the forest?
Or is there another factor at play? There is the fact, that they are, by definition much older. In addition, they have experienced their own childhood so they have something to compare ours too. They see what seems to be serious challenges because they are different from those in, their own childhood which often enough does not include Aspergers. Do not get me wrong, there are many mothers who have blogs which are well-written and also have Aspergers; but, the ones I follow the closest such as the brilliant blog written by Alice Hendley do not. Therefore, they know what it is like to go on dates and how most of the outside world thinks and are able to compare that to their children’s experiences with Aspergers.
The answer could be the result of a countless number of other factors such as to name a few one, most of the blogs by parents are by mothers and maybe women are simply better writers. I reject, this hypotheses out of hand but there could be truth to it. To name another reason, it could be that people with Aspergers don’t want to let our disability define us as much as it truly does. Therefore, I may choose to associate myself as a comedian with Aspergers. Being a parent of a child with Aspergers is much more of a choice if you are liberal and are on the left with your politics. Parents have choices such as abortion or adoption, therefore, they have more choice over their identity than someone simply born one way or another.

Happy World Autism day. I bet some of you are just coming back from the big parade that happened downtown in your city. Filled with sugar from a little too much drinking of soda from all the celebrations. What is that? No parade? Yeah me neither. How come certain causes get their own parade and festival well others do not? Are the organizers afraid that no one would show-up if they did arrange a parade? That’s just silly, because apparently 1 in 88 people are on the Autistic spectrum. That means that there is plenty of people who should either be on it themselves or have close family or friends on it. There is no reason why there are not just the pure numbers to have a big celebration that rival that of the G/L/B/T parade every year.
Both communities have alot in common, for example both of them have been/are considered a form of illness for a long time. I mean, people actually think that a pill can take away all that I am and instead replace my social awkwardness with a brain that works like an NT’s. Sort of like the transformation that happened in Family Matters when Erkal becomes the sexy Stefan who is a complete babe magnet. Hey, if it’s possible why not. My lack of lacking a sex life would be a nice change for a couple of months/ years.
I get it Autism lacks the sexiness of homosexuality. There just is not the same marketability of it. There will never be the same desire for movies with two autistic people. You will never hear a conversation like this in the bar.

Stefanie: Hey, instead of making out on the bar like we do every week, to look sexy for guys let’s do something really different?
Trish: Like what Bitch?
Stef: You’re the Bitch, Bitch. Let’s act really Autistic won’t that be so sexy.
Trish: You’re so naughty. I love it. Let’s totally do it tonight.

There are certain stereotypes people have of people with Autism such as we have poor fine motor skills. It’s true, there is nothing that will ruin a date faster than having the person you are trying to woo have to tie your laces for you. Except, maybe asking them to buy you a hot chocolate at the end and calling them mom. Worst practice date ever, am I right?
(seriously, never happened but I did have to have my dad or mom come into the locker room growing up and was like 13 to tie my laces because I could not tie them tight enough. It was extremely emberassing. Once this was no longer acceptable, for awhile a teammate would do it or my coach. One of my former teammates always brings it up whenever he is trying to embarass me in a social setting because he knows I am not proud of it and he thinks that everyone will get a laugh at my expense. Fortunately, I don’t hangout with this guy often, who would if they were me?)

I don’t get it. No don’t bother with subtleties and be straight-forward for a change because I don’t get it. I know you are doing it to try and be tactful because you think that I will be upset or that I will be all defensive. Trust me, I won’t. Instead I will thanking you for telling me the truth. The truth is I have Aspergers, therefore, 99% of your subtleties are lost on me. Sorry it’s true. So instead of having me pester you about when we are going to hangout when you have no intention to do so or it fits simply into the it would be nice if we hung out if the day had 25 hours kind of thing be straight forward. When you say “let’s hangout sometime” I don’t always read they are just being nice. If I lived this way I would be extremely cynical and would have a hard time believing anything someone told me. I already am horrible at accepting compliments because I don’t always trust them.
Every single time I think I am becoming friends with a guy or a girl they say let’s hangout sometime (insert something that sounds more sincere). However, every single time I suggest that we get together they have a ready excuse. I get it you are because, everyone is busy, however, if people were generally interested in being friends with you they would find time in their schedules am I right? I mean this one comedian I have been pestering for weeks to hangout with me because every time he sees me he suggests that we get together. Will it happen most likely not. Or someone will give me their phone number because they were being nice and when I actually use it they sound like they are surprised to hear from me and have a million and one excuses why they are busy henceforth. Having Aspergers means that I desperately want to have friends and romantic relationships just like everyone else, however, it also seems that I lack the skills to make the simplest arrangement of two friends hanging out, except for with another Aspie it seems.

People we are not doing enough to celebrate Aspergers/Autism. I don’t think we are doing enough to celebrate people with disabilities in general, but we are definitely not doing enough to celebrate Aspergers. We need to take a page out of the gay/lesbian transgendered communities playbook and embrace our differences.

First we could have Autism spectrum parades. I think our flag would be rainbowed like the gay and Lesbian community, because frankly we are a rainbow people. We think everywhere on the spectrum from the most outgoing individuals to the most withdrawn. There is nothing to be ashamed of. Yes, it is a burden at times but it can also be a gift. An amazing gift so why don’t we openly embrace our community of wonderful individuals and have parades

There is also a Gay and Lesbian show in the Winnipeg comedy festival. There is a panel to discuss issues relating to their specific community in a much larger festival giving them a forum to discuss their challenges and their triumphs with a much wider audience. I would love to have panels consisting of people all over the spectrum including NT (Neuro-typical) individuals talking. I think this is an amazing show and  would love if such a show existed for the disabled community. This would be a dream come true if shows like that were included in the Winnipeg comedy festival. I think that the autism community is even less well understood and represented in general and think that it would be amazing if we could be more represented.

I also think that it is great that there are characters who have autistic elements to them such as Sheldon from the Big Bang Theory and think that it would be that much greater if the character they had chosen to play him was on the spectrum in real life.

The real question is how can we network with groups who are already established and emulate them.

Just like there was once shame in being a lesbian and now the identity is embraced and for the most part openly accepted in society, it is my dream that the same could be said about the Autism community.

It looks like there are many bright days ahead for future generations of people on the Autistic Spectrum.
Growing up there were few role models in the mainstream media to look up to. Every other minority had someone it felt like other than people with Autism. I mean, yeah we had Temple Grandin, but that isn’t someone children will find as glamorous as say Mario Lemieux, Tyra Banks or even Stephen Hawkins. Temple, if you ever read this by some chance of reading everything that even mentions your name, I am sorry but its true. Over the last 12 years, however, all of that has changed.
Darryl Hannah the actress from from Kill Bill, Dan Ackroyd have both come forward in interviews and told the world that they had Aspergers in the last five years and even more recently so did the Miss America candidate from Montana. In addition, one of the glamorous candidates from the next top model also came forward stating that she had Aspergers. The top surfer in the world Clay Marzo also has Aspergers. Having all of these incredible people stepping forward will do many things for the autistic community. First, it will make it easier for people to come forward with their own announcements that they are on the spectrum. It will create a desire in many people to learn more about Autism which will only help especially since there are many great blogs such as Emma’s Hope Book and Life and Ink, recounting people’s lives and the lives of loved ones adventures with Autism, fiction books with autistic main characters, and non-fiction books detailing how life can be made better for these individuals by writers such as Rudy Simone. Stand-up comedians telling jokes and writing plays about the disability. In addition, it will also give future generations something that I did not have; role models to look up to and aspire to be like. Someone that they can relate to, who is just like them so that they don’t feel like such beautiful freaks.

Hi people
So I am stuck with figuring out what to name my show
Here are the top candidates so far
Pass the Aspergers; a story of honesty, courage, and Aspergers.
Aspergers am I rights?
On the Autistic Spectrum
Aspergers; a social misfit story.
Mr. Asperger

I am not sure about any of these names.
Please send in genuine sincere ideas.

In my previous post, I discussed how I feared that it would be horrible for the Autism Spectrum community that Adam Lanza was believed to have Aspergers, which had not been diagnosed. The truth is it does not matter, whether he has been diagnosed or even it is true or not. Once the media reported on it, it may as well be true. There are more people out there than I like to think who do not get the whole story but will see one newspaper article, or even only get their news indirectly from a friend and never look at an article themselves. Many people will be happy with this resolution that they can simply “other him” and not have to focus on deeper rooted issues such as gun-laws in America.
I mean after all who needs an assault rifle for anything other than putting lots of holes in human bodies. There is alot of money, however, surrounding gun control and will not be easy to place stricter rules on their purchases. Some people even suggest that the crisis would have been better handled if the principal had her own assault rifle. Yeah, more guns, that’s really the answer (Not). In addition, Americans love their independence and freedom and taking away guns apparently would infringe on “their rights”.
Therefore, people will look for an easier solution such as finding flaws in the gunman, Adam Lanza, which will make it easier to make him look like a single psychopath. What they have been able to come up with is the fact that he has Aspergers. It is easy to blame the mentally ill or people with Aspergers because they are a small minority so chances are many people won’t know an individual with it so will it be easier to demonize.
Not many people know much about Aspergers or the Autism Spectrum and as I have mentioned in my previous post, people with Aspergers are known to throw tantrums when they think life has been unfair to them. They also share many characteristics with psychopathic gunmen, such as the fact that they are socially awkward, eccentric and loners. These characteristics will also make it hard for us to speak up for ourselves and would make a successful PR campaign difficult. Nevermind, that we are more stringent rule followers than most other people because we need rules to guide our behavior and tell us how to act in a new situation.
For those people who think I am blowing this out of proportion and am wrong, think about after 9/11. All Arabs were considered terrorists by a large majority of our society. Nevermind, the fact that they had been living among us for a long time and many of them had been model citizens. In the back of many people’s minds when Arab people boarded a plane, security had to be extra cautious. Yes a few Arabs were responsible for 9/11, but only a tiny portion. Nevertheless, many Arab people suffered because of this. In addition, they had many things going for themselves the Asperger community does not have. The Arab community is larger, more organized and wealthier. In addition, they did not have the social awkwardness that challenges people on the Autistic Spectrum when they try to speak up for themselves.