Friday, May 10, 2013

Interview with Leigh Erin Ward-Autism Acceptance

I am interviewing Leigh Erin Ward, age 29. Leigh describes herself as a "Proud Aspie and theatre person." Here's more:
Has promoted autism awareness and acceptance as 2012 Ms. Project Independence and 2013 Ms. Project Independence Ambassador and just as herself.


Leigh, what is your life like as an Autistic person? 

Very blessed. I feel like I'm lucky to be me and have my own unique viewpoints of everything. I make it a point to stay positive for myself, as well as others around me. 

What is the most difficult thing about being Autistic?

I seem to have a lot of difficulty as far as domestic duties. My place is always a mess (even when it's my definition of clean). I don't have as many meltdowns when I did when I was younger, and sometimes I'm able to step back and mentally take the situation apart and avoid one, but every once in awhile I get one that I can't avoid. There was one at work a few weeks ago. Luckily, we have a very small office and only 2 of us were at work. The co-worker who was there was very understanding about what happened. I got her flowers the next day.

Things were a lot worse when I was kid. My kindergarten teacher would send me to her husband's 5th grade class to sit in a corner when she didn't want to deal with me or I had a meltdown. If something went wrong in the class I was usually the first one to be blamed. One time, I drew on my arms with markers, and she made the class stand around me and laugh until I finally broke down and cried. My first grade teacher would take me to the special ed room and lock me in a closet with my work. My family was never notified about this and only found out when the teacher forget to let me out one day and my Maw-Maw couldn't find me after school. I was always in the office for fighting. Kids would always pick on me on the playground and if they wouldn't leave me alone it would usually end up in a fight. Of course I was labeled a "problem child" and always got the blame for everything. My mom says if she could turn back time she would sue the school, but back in the 80's no one here really questioned the education system. 
Needless to say, I'm very paranoid about sending my kids to school one day. My fiancee and I have talked about it and plan to send them to a private or specialized school or we'll home school them.

What is the most joyful, fun, exciting thing about being Autistic?

One of the best parts for me is meeting others with Autism. There's something really magical about being able to understand each other in a way no one else can. One of the kids that I mentor, Matt, has a t-shirt that says "It's an autism thing, you wouldn't understand!" I didn't really have much support as far as my autism growing up as I was diagnosed late, so I want to be there for the next generation. I want to inspire them. I always tell people that Autism is a gift, you just have to use it instead of leaving it in the closet. My dream growing up was to be a pageant queen, but I could never win because I was "different" from most pageant girls. Winning Ms. Project Independence was awesome because not only did I (finally) achieve my own dream, but in doing so I'm able to show that if I can do it, anyone with autism can achieve their own dreams as well. Celebrating small victories is also awesome. Sometimes the simplest things seem so hard to do, but when you do them you want to shout, and sing, and dance around! Life is more fun when it seems you always have something to celebrate.

Congratulations on winning Ms. Project Independence! Yes, definitely celebrate! That's part of what we are doing here with Autism Acceptance Day/Month initiatives. By the way, I love that T-shirt slogan. :)

So, how has the Autism Acceptance Day/Month effort over the past three years affected you personally?

I have a friend who is president of the Gay Pride group where we live. He says that Autism Acceptance Day/Month is like my special time to be extra out and proud about my autism. We've compared it, it it does seem that so many people are staying in the "Autism closet" which makes me sad. There is nothing to be ashamed of! In truth though, Autism acceptance should be year round :) It has to be, because we're always living with it, not just for one month out of the year.

Well, now it is going to be year-round, because we are going to be doing this for the rest of this decade, with International Autism Acceptance Decade, 2010-2020 (see pages here for more information). 

What is one thing about acceptance that would make a difference in the world?

I think it would be great if people could accept us as who we are. My mom is one of those people who's always wanted to "fix" me or find a "cure". She doesn't seem to understand that I'm fine the way I am and that hurts me a lot. I can understand if the world doesn't accept me, because people tend to be afraid of what they don't understand (which I try to rectify when I meet people like that). But I wish my mom would accept me as I am.  

Do you have children or other family members who are Autistic? If you would like to say something about them, please do. 

We believe that my fiance also has Asperger's, although he hasn't received any kind of official diagnosis. We try to be really supportive of each other in everything that we do. He's honestly one of the most supportive people in my life. It hasn't been an easy relationship (we've been together for almost 4 years) but we've made the right changes in our lives over the years to make it work and to make us happy both with each other and with ourselves. He's been super understanding of my autism since day one. He's seen my at my worst, during one of the worst meltdowns I've ever had. Most guys wouldn't have stayed with someone after an incident like that, but we talked and worked through it. He's also seen me at my best, and is supportive of all the mentoring and charity work I've been doing. We plan to have children not long after we get married, and we've discussed the fact that our children might be autistic and how amazing they are going to be and how much we are going to love, accept and encourage them.

Leigh, thank you for sharing some of your life with us. Best of wishes to you and your fiance!

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.