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Poledancers for Autism Awareness (Jun 15)
The event was a lot of fun, and I was (once again) impressed by the sisterhood and support showed by all of the dancers. Given the nature of the event, I was curious which dancers had a personal connection to the cause.
It turned out, that many of them had personal connections and were willing to talk about them in a "20 Questions" gallery. Here are a few thoughts from Kelly, Nina, Lisa, Amanda (@amanda_poles), and Sally (@sallysachs). Thanks ladies.
Lastly, after the event, I made a contribution to the National Autism Association at Nina's suggestion. If you are inclined, please visit them at: http://nationalautismassociation.org
KBev: How has Autism been a part of your life?
Nina: Before I had my own kids, I worked in early childhood. My exposure to any disability was only through my students. However, having the knowledge and exposure to a variety of types of development, it helped tremendously once my kids came along. My daughter was diagnosed in 2010, my son in 2011. However, I was handling autism since they were born, as that's how it works ; )
KBev: What gave you the idea for the fundraiser?
Nina: I have participated in pole fundraisers for sexual assault victims and have seen other studios perform for the benefit of breast cancer and a few other things. Basically, I thought, "well, if they can do it for that, why not for autism?"
KBev: What is something that you wish everyone knew about people with Autism?
Nina: Every person with autism is really fucking cool. They help you appreciate and see the world differently if you allow yourself to be open to that experience.
KBev: What organization should people support if they want to help a good cause?
Nina: All of them! Local organizations are the ones to directly service your loved ones, national organizations (like National Autism Association and Autism Society of America) also help, but do more large scale things.
Kelly
KBev: How do you view the Autism spectrum?
Kelly: On the more severe side of the continuum individuals may be nonverbal or non-communicative. On the high functioning end of the spectrum (what used to be called Asperger’s) individuals may be socially awkward but may also see some benefits such as incredible focus and strong logic abilities. So to me the spectrum ranges from low functioning to Asperger’s to engineer. A lot of engineers have at least some autistic like traits whether or not it's severe enough to merit a diagnosis. I'm only barely into the spectrum but definitely there. I got diagnosed via IQ testing that I did after my son did (his led to a diagnosis of ADD and dyslexia). This is a common way that adults get diagnosed with Asperger’s. Trying to figure out your kids issues leads to trying to figure out yourself.
KBev: What were some of the challenges you had growing up that people should be more sensitive to when they meet someone with any form of autism?
Kelly: I was lucky growing up to have an amazing best friend and a relatively bullying-free environment. Having that one friend who really “gets” you can be a life-line for many people with differences. As an adult, it’s a bit harder. In school, I used the very successful adaptive strategy of always being obedient and doing what I was told. In the workplace that strategy fails. There are competing agendas, and multiple people to “obey” - your boss, your co-workers, your conscience. I tend to go with my conscience, though the more successful strategy might be to do whatever my boss even if I know it’s not the “right” thing to do. In trying to explain my reasoning in my straightforward and honest way, I am seen as too blunt or aggressive. Most critiques coming out of employee reviews read like a textbook description of someone with Asperger’s. So it’s like they are asking me to just stop being Aspie. Well wouldn’t that be nice? A separate challenge that I’ve had all through my life is being “too emotional”. The irony is that Aspie’s have a reputation for appearing cold or distant when many of us are actually extremely emotional. The problem is that our affect doesn’t always match our internal feelings. We don’t know how to convey our feelings like a neuro-typical person might. Men have a tendency to show anger. Women tend to cry. Crying isn’t so bad as a child - it even gets you sympathy! - But it really sucks as an adult. Being told to “just don’t cry” is like being told not to sneeze. It’s exceedingly difficult to stop such a physical reaction. In general like many Aspies, I am prone to anxiety and have to be careful to manage my known stressors. Dance is an incredible stress release!
KBev: Tell me a little about how you started dancing and the effect it has had on you.
Kelly: I’ve always loved gymnastics and dance, and had wanted to take pole for some time. I’ve always been drawn to unusual sports and activities. I started pole at a dance studio that offered many different drop-in classes. I got a membership and started taking up to 5 dance classes a week! I loved the hip hop and striptease classes, but pole was what I really fell in love with. It’s like being a kid at the playground, only sexier!![KBev: What advice would you give to people that interact with “Aspies” on a regular basis?<br />
<br />
Kelly: Most Aspies place an extreme value on honesty. We can’t tell when you’re lying to us, so it’s easy for us to get taken advantage of. f[1] I’m naturally suspicious of people who put on airs and are fake. I have a hard enough time reading regular people, but people like that are impossible for me to read and it makes me really uncomfortable. What others might consider blunt and rude, an Aspie might consider refreshingly straightforward. Be aware that there is often a mismatch between how an Aspie actually feels and how they appear to feel. My coping mechanism is to smile by default. It gets worse if I’m really nervous. But there are some situations where smiling is inappropriate and that can be off-putting to people. Mostly though, read a few lists on the common traits of Asperger’s and don’t get on someone’s case when they display these traits. They are plenty aware of their Asperger’s and having you point it out is in no way helpful. Most likely they’ll just stop trying to interact with you. Many Aspies ruminate over all the social mistakes that they make. Having them pointed out makes the ruminating become a nightlong insomnia-inducing affair. It’s like my singing. I’m not tone-deaf, so I can tell exactly how bad a singer I am. My social skills suck, but my awareness of that fact doesn’t do a whole lot to make my skills any better. I just ruminate about it and feel bad when I screw up. I can avoid karaoke, but I can’t avoid interacting with people.](https://photos.smugmug.com/20Questionswith/Poledancers-for-Autism/i-7xXW3mS/0/75afc7fb/XL/800_9337-XL.jpg)
KBev: What advice would you give to people that interact with “Aspies” on a regular basis?
Kelly: Most Aspies place an extreme value on honesty. We can’t tell when you’re lying to us, so it’s easy for us to get taken advantage of. f[1] I’m naturally suspicious of people who put on airs and are fake. I have a hard enough time reading regular people, but people like that are impossible for me to read and it makes me really uncomfortable. What others might consider blunt and rude, an Aspie might consider refreshingly straightforward. Be aware that there is often a mismatch between how an Aspie actually feels and how they appear to feel. My coping mechanism is to smile by default. It gets worse if I’m really nervous. But there are some situations where smiling is inappropriate and that can be off-putting to people. Mostly though, read a few lists on the common traits of Asperger’s and don’t get on someone’s case when they display these traits. They are plenty aware of their Asperger’s and having you point it out is in no way helpful. Most likely they’ll just stop trying to interact with you. Many Aspies ruminate over all the social mistakes that they make. Having them pointed out makes the ruminating become a nightlong insomnia-inducing affair. It’s like my singing. I’m not tone-deaf, so I can tell exactly how bad a singer I am. My social skills suck, but my awareness of that fact doesn’t do a whole lot to make my skills any better. I just ruminate about it and feel bad when I screw up. I can avoid karaoke, but I can’t avoid interacting with people.
KBev: Nina told me that you have a science background and have studied autism. Can you tell me a little about that?
Amanda: Sure. My background is in Psychology and Neuroscience, and my own interests focus on clinical issues, so I studied autism quite a bit over the course of things. Over the years, my professors reviewed autism as a disorder from the psychological, biological, and behavioral perspectives.
KBev: What is the focus of your research now?
Amanda: Currently I work in a cognitive neuroscience lab studying animal models of episodic memory, including spatial, prospective, temporal, and olfactory memory. My specific project examines the involvement of a particular gene in cognition using rats, with hopes of uncovering a greater understanding of the cause of cognitive decline in Alzheimer’s disease in humans.
KBev: For autism, what do scientist know about its causes and how to treat it?
Amanda: Great question! There’s a big difference between what brain scientists know and what they think they know. Essentially, autism is still a mystery. With developments in technology such as brain scanners and eye trackers, we’re getting closer to understanding the disorder and working out proper theories. We’ve come a long way from “facilitated communication” (look up a video, it will sadden, confuse, and infuriate you), but we still have a long way to go.
KBev: Biologically, what is happening in the brain of people with autism?
Amanda: There are several genetic factors thought to be at play in the autistic brain. One interesting fact about autism is that it has a much higher prevalence in males than it does in females, which lead scientists to examine the X chromosome. Since males only have one X chromosome, any abnormality will manifest without another X chromosome to “overrule” it, as happens in females. Neurobiologically, evidence suggests that people with autism have disturbed excitatory/inhibitory systems in regions such as the fusiform face area, which processes faces, and the mirror neuron system, which facilitates social behaviors. There is also a reduction in neurons in the cerebellum, the brain area associated with coordinated movement, abnormalities in the amygdala and limbic system, which are responsible for emotionality and emotional regulation. There are endless studies of the autistic brain, but unfortunately none of them converge to strongly suggest one main cause or effect of autism, but rather a combination of several abnormalities.
KBev: On a side note, do a lot of the researchers in the lab know about Amanda the dancer?
Amanda: Funny story, before I started working at my current job, I made sure to separate out Amanda the Dancer from Amanda the Scientist, creating different Facebook profiles and all. I must have missed some linked account, though, because an avatar of me poling popped up next to my name when my boss wrote me an email during one of our first meetings. Fortunately I don’t think he made the connection that the picture was of me. He just said “People sometimes have the strangest things for these pictures.” Besides my boss, though, everyone else knows I pole dance because I can’t not talk about it, apparently. They are all blocked from viewing my pole dance profiles, though. Talking is one thing, seeing is another, just too weird.
KBev: How as autism been a part of your life/ your family?
Lisa: I have an autistic cousin who I barely knew growing up. My memories of her are very few as her parents decided to move her into a special home for people with mental disorders when we were just children. At the time, I think this is how many people dealt with autism. I haven't seen her since and hear very little about her. She would be 36 now I believe.700781320questionsEventLisa MichellePole DanceSportsTalk To Me
KBev: What have you learned about people with autism from your own personal experience?
Lisa: They are not less than the rest of society. They have a very different way of seeing the world, one that is worth investigating. I do think that we have learned more about the human mind and emotions from taking more time to study people with autism and similar conditions.
KBev: What advice would you give relatives of people with autism?
Lisa: People with autism can teach us a lot about ourselves and help us redefine what our definition or normal is. Take time to learn about people that process information and send messages in a different way than you. When it is difficult, reach out. There are communities that offer support and solutions.
KBev: Be honest, did you chuckle at the headline of a “Poledancing benefit for autism”?
Lisa: I did, but it's such a novel idea that it stood out in my mind. I can't say I've ever heard of anyone doing a benefit for this cause in pole dance history, so I felt compelled to join. :)
KBev: What is your connection to autism and people with other challenging conditions?
Sally: I started working with "special needs" clients when I was 16 and it's been a while since then. While I am no longer in the social work field, my connection to people with autism and other disabilities remains in that it has dramatically impacted who I am and how I interact with the world and those around me. For example, I tend to view behavior as a form of communication and will go to great lengths to consider why a person is doing something that might generally be considered "negative" rather than writing them off. In the end, aren't we all special needs? I mean, really.
KBev: What lessons did you take away from working your experience as a social worker?
Sally: What I have taken with me is compassion, patience, respect for human dignity above all else. I mean, I used to change a lot of adult diapers and it wasn't exactly a pleasant experience but I would always think about what a vulnerable position it is to be a grown 45-year old man having some 23-year-old kid change your diaper. I would think about what life must be like for someone who has never been able to use the bathroom on their own and has never known one moment of privacy. The most important thing to realize about someone with a disability is that they are a person. For someone with autism you never really know what's in their head or how much they really do understand about what's going on around them.
KBev: What advice would you have for people when they encounter someone with autism (or any other challenging condition) for the first time?
Sally: Always assume that someone with Autism understands more than you think they do. Treat them like a human because they are. Don't talk about them in front of them. Respect and dignity are key. That being said, I think a lot of "autism awareness" kind of goes to the other extreme, almost pushing the idea that people with autism can accomplish anything if caretakers just do it right. Or that autism is fantastic and some sort of blessing in disguise. Well, that's a lot of pressure to put on a caretaker both to achieve all the things and to stay positive all the time. So really one huge piece of advice I might offer to parents/caretakers is the following: if you are doing your best it is enough. It has to be enough. Some people with autism can reciprocate (i.e. show a connection to you, show love in some way, talk to you) and some just never will. It is hard pouring everything you have into raising a person who never looks at you. That doesn't mean the person isn't worth the effort- they are human after all- but if you are a primary caretaker, the best you can do is the best you can do no matter what anyone tells you. I know that went way off the topic of first-time encounters but it's important.800773620questionsEventPole DanceSally SachsSportsTalk To Me