Sunday, May 5, 2013

Interview with Joel Smith- Autism Acceptance



Today's interview is with Joel Smith. Joel blogs at http://evilautie.org/ and has been an Autistic activist and advocate for many years.

Joel is 30-something, an autistic adult who loves the diversity of the autistic world, challenging prejudice, and spending time with his wife.
What is your life like as an Autistic person?
It's probably the same as any other person.  And different than any other person (just as they differ from each other).  It's a pretty quiet life compared to some.  My wife and I have a dog, an Italian Greyhound.  Our dog loves our company and treats us like we're the most important people on earth when we come home, but at the same time, she doesn't particularly care about other people or animals.  She's content to be with just a couple of people all of her time, but she also misses those people greatly when they aren't around.  I think a lot of autistic people are the same - we want companionship, love, friendship, but we may seek out a few deep relationships and don't have much use for tons of acquaintances   Certainly, you won't find me at the bar or a loud party, nor would you even when I was in college - those types of things just don't make sense to me.  I'd much rather spend an evening with a close friend or my wife.

What is the most difficult about being Autistic, for you?
I don't know.  I think I have a pretty easy life compared to many (autistic or non-autistic) at this point in my life - my needs are basically met, I have people I love around me, and I've found a good professional niche.  I'd say the difficult part today is dealing with medical professionals for my own needs.  How do you convince a doctor that "I am in pain" actually means "I am in pain"?  I haven't figured out how to do that.
But, growing up, my life was much more difficult.  At some points, I couldn't handle the tasks of preparing my own meals and making sure I ate. That wasn't good.  But that wasn't anywhere as close to as bad as my childhood.  Having periods without any friends and being the target for every bully (or, probably more correctly, every criminal intent on assault and battery in my school) is even worse.  I truly believe it's a miracle from God that I'm alive today - that I made it through my childhood without killing myself. 
So I would say the worst thing - bar none - is abuse.  Nobody should go through what I went through.  Yet kids still do, and I still hear people say "it is better now" when it isn't, at least not for some kids.  I wasn't believed when I was a kid, and I see the same thing for kids today.  I hope anyone dealing with that can see in my life and others that it may get better someday - I'm glad I survived, it was worth it.  But it didn't feel like that then, and someone who hasn't experienced the incredible abuse that too many of us experience can't possibly understand why it is so hard to hang onto any hope.

Joel, I am very glad you made it, and, yes, many Autistic chlildren still suffer this kind of abuse, sadly. It is a sobering thought, which makes me want to put in a bit of (visual) blank space before jumping right into the next question. [I have entered ten (10) lines of blank space right here.]











What is the most joyful, fun, exciting thing about being Autistic?
I don't know if it has anything directly to do with my autism or not, but I love being with people I love.  I also love - always have - seeing the world, whether that's a mountain 5 miles away (I did say my life is good now!) or a country on the other side of the planet.  But probably the autism-related aspect is the freedom I've given myself - in part because I know my brain is wired differently than a lot of other peoples' - to be myself, to pursue my dreams and goals, and to do this in a way others might not.

How has the Autism Acceptance Day/Month effort over the past three years affected you personally? If you were not aware of it until recently, what meaning does Autism Acceptance Day/Month have to you now?
I remember Autistic Pride Day from years ago, and how some people felt that to have pride in who they were, that they had to somehow prove they were superior or better than neurotypicals.  It was not joyful, it was sad.  Not everyone did this, but it was common enough that I had trouble feeling very proud on Autistic Pride Day.  Today, it feels like the movement is, by large, more accepting of diversity - including neurotypicality.  I like the focus on the need for acceptance rather than pride, I think that focuses us on what is important.  Not superiority, but simply the right to participate in the world.
This is ironic really since much of what I write on Evil Autie (http://evilautie.org/) and my defunct "This Way of Life" blog was criticized for being anti-parent or anti-neurotypical.  That's why I adopted the "evil" moniker - I still have no idea why people sometimes see my writing that way, but I figured I might as well embrace it and try to make something good out of it.  I don't think I'm really evil, but my words are so often misinterpreted that I got known as "that angry guy" or anti-parent or anti-neurotypical.  Yes, there are things I get angry about, but ironically one of them is autistic feelings of superiority over others.  I find that just as offensive as any other egotistical behavior from any other group!  So I'm thrilled that the focus is on autism acceptance now - something we desperately need.

What is one thing about acceptance that would make a difference in the world?
Hope.  The person who is living a hell in real life, whether it's incredibly cruel abuse at school or a completely horrible living situation, that person needs real, tangible, believable hope that there is a possibility of things being better one day.  They need to hear from people who have been through what they are living, who can give a bit of hope.  Part of this is working to make sure that this hope is realistic, that there is something for people to hope for, something that can actually occur.  When you're abused, it's hard to see the good possibilities that really do exist for your future, but it's even harder to see the ones that don't yet exist.  So we need to change that.  We need to make it easier to see possibilities by making more possibilities exist.
My wife is also autistic.  It's wonderful to share my ife with someone who shares this part of me, who can understand me in this way - and it's wonderful to be able that I'm able to do the same for her.

Joel, thank you so much for this interview. I, too, think that hope is of critical importance. These interviews might provide some of that hope for readers of this blog.




3 comments:

  1. Good interview. Extending Joel's idea of hope, it would be nice to have one centralized resource (a book, but better yet an online resource that is free) of multiple people's success stories. Not feel-goody mush, but real instances of success with personal freedom, happiness, interesting hobbies, and yes even fame and fortune.

    For me it was finally leaving the central and eastern parts of the US and moving out west. The desert and the Pacific were like a 24/7 energy drink.
    Another was working on fishing factories in Alaska, it was rough but invigorating, and gave me nice lump sums of money which then provided real mobility.

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  2. Love Joel's honesty and willingness to share his truth. Certainly empathise with the abuse (school and at home when young) and know that there is hope for those currently enduring it. He and I both can say "It gets better" with conviction. :^)

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  3. It does and it doesn't get better. I also have mental health issues, one of which is PTSD shadow-like traits. I don't manage stress well to begin with, and life is a daily struggle for me. Hope is good, and so are laughter and humor.

    *Trigger alert*

    I was often sick as a kid (still have one thing after another, even as an adult) and was often told by other students that my parents should just take me back behind the barn and shoot me. I struggled with depression and suicide for years, and those words still sting. I went through a lot of mental pain. I'm still reeling from a mental health breakdown after being told that my job of four years is being eliminated (after putting my heart and soul into it!). It's a tough road, but like I used to tell my dad, the only purpose the past has is to instruct the future. I've learner I'm a fighter, resilient, and Aspie Strong.

    I wish there was more information on ASD adults and PTSD. I feel alone in my struggles.

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