Thursday, May 16, 2013

Interview with Jay-Autism Acceptance



I am interviewing Jay, age 30. Jay is from Newcastle, England,

but soon to be living in sunny LA. I was officially diagnosed as having Autism Spectrum Disorder last year, a short process considering that despite not informing my mother or myself the therapists I had seen in my teens had determined I was on the spectrum, and by the time I went for an official diagnosis I had been part of the autism community for around two years.

What is your life like as an Autistic person? 

It’s hard to say what life is like as an autistic person, I’ve spent most of my life living as a neurotypical person and it’s only now that I know I’m autistic that I know for certain I’m different from those around me. Despite being severely affected as a child I wasn’t diagnosed, it was assumed my problems were due to childhood abuse, this was a blessing in a way as it meant I was mainstream schooled so had a good chance to catch-up to my peers. Of course not knowing why I was different made things a struggle and like most autistic people I faced bullying in school along with a lack of academic support, lack of progression and aggression from coworkers in the workplace, and loneliness in my personal life...but then autism is also what saved me, made me thicker skinned, more open-minded, and more accepting of my own differences. Life as an autistic person is like life as anyone else, a constant struggle worth fighting for.

What is the most difficult about being Autistic, for you?

The most difficult thing about being autistic for me is the idea of friendship. As an adult you inevitably lose friends and the older you get the harder it is to establish new friendships, yet I see people who have the same close friend groups since high school and wonder why I can’t have that. The ability to just hang-out whenever you want with people who understand you is just something I’ll never have. I can go day or weeks without needing to be around others, but then when I want to go out to a nightclub or if I need someone to talk to I realise that I have no one. I had friends once, so I know at some point I must have had the ability to maintain friendships, but once I became unemployed my autism worsened and of course unemployment itself kills any sort of social life you may have had anyway. Of the few friends I have left I’ll meet them for coffee once every few months but that’s it...no hanging-out, no talking to each other online in the meantime, it just doesn’t feel like what I think a friendship should feel like and I’ve no idea how to change that.

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

Right now the most exciting thing about being autistic is simply being autistic, I always knew that I was different but figured it was okay and I’d discover why this was at some point in the future, now I know why I’m different. I didn’t expect that in finding out why I was different I’d also find so many others who are different right along with me, other autistic friends, advocates, and I met my autistic partner via the autism community. I like the sense of identity and pride in being part of this group, I love to see the progress advocates make in improving how we’re treated and support is available to us. Sure there is a lot of prejudice and ignorance, but I just love that all of us outcasts can be so active in standing-up for our rights.

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

Autism Acceptance Day/Month hasn’t had an effect on me, except for last year when I chose this day to ‘come out’ as autistic on Facebook, although for the record no one was surprised and it was all rather anticlimactic. I’ve yet to firmly establish how I feel about Autism Acceptance Day/Month, I think it’s because in the UK being autistic isn’t as much of a big deal as it is in the US, where there is a lot more in the way of politics and prejudices surrounding autism. In the UK I have no problem being open about autism, however in the US I’m worried because of what it could mean, there’s a real need for awareness and acceptance in the US. Once I move to the US I suspect I’ll be more motivated to become more active in Autism Acceptance Day/Month, especially as once in the US I plan on pursuing a career mentoring young autistic adults.

Yay! I am glad you are thinking about being active in the Autism Acceptance Day/Month efforts. 

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

It’s all about equality. Autistic children lose grades for not being able to work in groups or give presentations, I lose out on jobs because during interviews I can’t make eye-contact or perform role-play, on the street when a child or adult has a meltdown it’s a count against them as a human being, and if they’re non-verbal they may as well not exist. Accepting us not only means equality for us in a wide range of situations but also brings about a better society where differences are accepted and strengths are recognised, where people think before they judge, and when out-the-box thinking is utilised rather than shut-up.

Do you have children or other family members who are Autistic?

I’m the only autistic person out of large families on both my fathers and mothers side. My finance is an aspie, although he’s more severely effected than me his autism has been invaluable in his success in business, so we’re definitely pro-autism in this house. Interestingly one of my fiance’s children is also on the spectrum, he’s yet to be tested and his parents have yet to tell them that he’s autistic, also they don’t know that dad and stepmom are autistic. There’s no doubt that my finances child is autistic, it’s interesting seeing him experiencing similar things as we did at that age, until his mom agrees to testing it means his dad is helping him the best he can, and dropping hints that being on the spectrum is kind of awesome. 

Thank you, Jay, and a warm welcome to the U.S. I hope you enjoy being here!





Monday, May 13, 2013

Interview with Vera Didenko-Autism Acceptance

I am interviewing Vera Didenko, age 32.

Intro: My story really begins, albeit under my birth name, Vera Pletin, when I was age 3. My parents thought I was deaf because I was non-responsive to them calling for me and I wasn't speaking coherently.  We went to several doctors and I was diagnosed with "mild autism." I was later placed in special education and speech therapy in grade school until I was age 9 and 12, respectively. After grade school and high school, my college journey started at Cuyahoga Community College, took a detour and participated in City Year Cleveland, and finished (so far!) at the Ohio Center for Broadcasting. I worked for a few radio stations in continuity, or commercial production, for a number of years. Nowadays, I work under the U.S. Department of Defense, providing support on behalf of our military. Oh, and I did a legal name change in 2011 to Vera Didenko, honoring my dad's biological (albeit technically presumed) father. 

Vera, what is your life like as an Autistic person?
 
So far, I see my life as an Autistic person as one big adventure. Twists and turns and the like surround my life story. I always find myself to keep going, wanting to know what the next chapter is going to be.

What is the most difficult about being Autistic, for you?

Two words: eye contact. Ugh, I despise it. It feels like someone is ejecting lasers out of their eyeballs and they hit me through my eyeballs and penetrate all the way to the back of my head, leaving me looking back at that person with a glossy stare on my face. Epic embarrassment. What's even more embarrassing is when NT people don't understand why you're not looking at them in the eyes, or start demanding that you look at them, to "prove that you're not lying." 

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

Two things I credit are my ability to persevere and empathize. I mentioned earlier about how I see my life as an adventure. My perseverance has kept me going to uncover and discover where the adventure takes me next. Along the way, I absolutely love listening to stories being told by people. I find myself picturing in my mind what they're experiencing in their lives. If they have a problem, I try to picture what the best course of action for them to take with whatever knowledge I possess. That's how my empathy comes into play. I believe I wouldn't have those abilities if it wasn't for my Autism.

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 wasn't aware of Autism Acceptance Day/Month until this year. I heard about "Autism Awareness," last year, but it didn't really do anything for me. This year, in reading other Autistics' testimonials about how Autism Acceptance has been for them, it has made my whole body, figuratively, jump for joy. It has me even more proud to be Autistic.

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

Acceptance will make NT people more understanding and reasonable, and less ignorant. Point blank. We as Autistics may not be able to socialize equally to NTs, but we are just as socially equal.

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

I do have a family member who is also Autistic, albeit self-diagnosed (and for those who know me personally, know who I am talking about). He is my #1 hero of all heroes. His story is way better than mine, but I don't have enough words for this interview today. I do want to thank you for this interview, and the other interviews you have conducted so far! Keep up the great work!

Thank you, Vera. It's people like you who are making these interviews great! Perhaps I will get a chance to interview you further at some point.