Aspienwoman Mentor Interview Series: Actress Olley Edwards

This is my 6th Interview of people involved in the world of Autism or Asperger Syndrome. Previous interviews of mine include: Professor Uta Frith, Maja Toudal, Kathy Hoopman, Lynn Marshall, Rich Everts and The United States of Autism Movie.

This interview is the second in a series where I interview Mentor Aspienwomen from a variety of countries about their lives, Asperger Syndrome, their gifts and talents and more! Actress Olley Edwards is a professional actress from the United Kingdom and an Aspienwoman mentor, who seriously advocates for female Asperger Syndrome through by making a movie and writing a book about the condition.

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Tania: Welcome Olley and great to have you on join a phenomenal group of female mentors, in this interview series and future book!

Olley: Tania, thank-you for inviting me and it is a pleasure and a bit of a mission of mine to advocate for females with Asperger Syndrome.

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Tania: I came across you in my research on female Asperger Syndrome. I had initially heard about you in terms of this incredible movie that you were making, at the time, called “The Kindest Label”. When I read your script I was very impressed. I also want to say that I love the title of the movie because one of the most common comments I come across for not having a female formally diagnosed is the stigma of a ‘label’. Please tell us about your movie?

Olley: ‘The Kindest Label’ is a short 20 minute film about the importance of an early diagnosis of females with Asperger Syndrome and the consequence of a late or missed diagnosis. The movie told from the view point of lead role “Belle”, not only as an adult with a late diagnosis but also by Belle’s younger self experiencing the lack of understanding and support she should have had. Belle is a complex adult with addiction issues living in temporary accommodation. She is trying to rebuild her life now that she has received her late diagnosis at 26. Her younger self who tells her story in flashback scenes is a clever and bright young girl who has very little support in school and in safeguarding issues.‘The Kindest label’ also shows the adult Belle, with scenes of how she now can see how her life could have been happier if she had been diagnosed sooner. It shows just how Belle’s life could have been with Asperger Syndrome, the “The Kindest Label” she ever had.

‘The Kindest Label’ is going to be entered into as many film festivals in UK and Internationally as possible, My aims by doing this are to raise awareness, (open a few eyes and prick up a few ears) and to hope that someone with the expertise, money and contacts likes it enough to make it into a feature film for a global audience. My film is intense, information packed, hard hitting snap shot at late diagnostic consequences but it could easily be expanded upon to make a ground-breaking feature. The movie aims at raising awareness and changing the perception of “what female AS” looks like forever.

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Tania: How can people view ‘The Kindest Label’?

Olley: Due to festival regulations, I am unable to post film online until after festival use, to raise awareness in the meantime I am arranging private screenings and will endeavour to take film into secondary/high schools to use along with my book to talk about female Asperger Syndrome.

Tania: You directed this movie and you are an actress yourself?

Olley: I wrote, co-directed and acted in “The Kindest Label”. Luckily, being an actress, I have great actor, director, cameraman friends who came on board and gave up their free time and talent to make this happen. Playing Belle as an adult was a pleasure as well as hard work , to prepare myself for the “homeless addict” role didn’t wash my hair for 8 days and it also meant filming with no make-up or glamour, this felt very vulnerable as its normally these “costumes” as such that help me feel more confident when acting. I am however more than pleased with the end result as Belle is a very guarded yet unconfident young woman and that shows on tape.

Tania: How did you get involved in acting?

Olley: I started acting at a very young age; it started with dance lessons at 4 which grew into attending South Hill Park, the local arts centres drama classes every Saturday by 8yrs old. I became obsessed or should I say, hyperfocused with entertainment and was interviewing pop groups on Saturday morning TV by 10. I loved entertaining of any kind and took part in local productions and the school plays. My school was just a normal state school, it was huge, scary and I hated it. I went for one reason and one reason only, we had a great theatre and I use to skip PE and any lesson I could go unnoticed in just to pretend it was my drama lesson and go there instead. The teachers soon realised what I was up to but they let me get away with it most of the time. I got the role of the Artful dodger in the main school play, I prepared for this by constantly watching Oliver on VHS and copying the role of dodger over and over again. It was a boy’s role but loved playing a boy and was convincing enough to receive the school drama award for it. The next year I started lessons at a very well-known London Drama school. I only went one day a week but it was always the best day of the week. I felt so at home there and was offered a small role in Disney movie, which I couldn’t take up on, however the head offered me a full scholarship. Sadly I couldn’t attend fulltime as we lived to far away and the lodgings were very expensive. I can remember crying for a whole day in my room. I must have had the whole street thinking what a spoilt brat I was. I know now I wasn’t a spoilt brat, I was having a meltdown and unable to continue with my subject of hyperfocus.

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I’ve always been an extremist 100% in or 100% out. Very black and white thinking. To me this meant I could never act again and I went downhill into an extreme teenage rebellion by the age of 13. I had replaced the friend and buzz of acting with secret drinking, drugs, you name it. This resulted in a teenage pregnancy by 15.

From the moment I knew I was to be a mum my hyperfocus was just that. To be the best mum I could be. I knew it wasn’t going to be easy but I loved being a young mum and I felt truly blessed. I was married by 18 and had my 2 other daughters within that marriage. My obsession was 100% on parenting and housekeeping. I lived in constant anxiety that I wasn’t the perfect mum, developed OCD and insisted on everything being lined up a certain way, certain coloured ornaments in in certain rooms and felt so empty that I started to diet a lot, weighing just 6.5 stone at 22. I was very happy being a mum. I live for the girls, I loved the routine of marriage but I did feel like I was just playing another role and something was missing. I felt I was never good enough but I was a great mum and wife I just had a huge chunk of my identity missing.

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After my divorce, I had these awful voids of time where children were at their dads and step mum’s, I filled this void (which I can only liken to having 3 limbs removed) to go back to my first love, acting. My acting has gone strength to strength and even if I’m sleep deprived I feel acting energises me mentally. As any mum knows you have to put a brave face on a lot, any single mum with several children on spectrum will tell you how that brave face may as well be super glued on some days! Acting is once again, my safe place, whereby I can have escapology, display emotions, spend time with others, and cry on demand if required too….with ease.

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Tania: I have provided formal diagnoses and personally know many actors/actresses with Asperger Syndrome. Your own daughter Honey is also an actress and has Asperger Syndrome. She also starred in your movie. Did Honey naturally follow your footsteps, in terms of acting?

Olley: Honey has many talents. It would have been unfair for me to push her on the stage all “pushy mum”- esque. Honey also loves reading, history and sci fi. Honey is a really intelligent young girl but this intelligence was leading her to be very isolated and she was spending huge chunks of time alone in her room, not hours, not days but up to a week at a time in summer holidays. With the help of a bursary from South Hill Park, the same Arts centre I went to as a child, Honey was given a small role in the Easter show. I will never forget the first day when the teacher asked me if I knew Honey could sing. Actually, no , I didn’t know she could sing, Honey was almost mute at home after being drained from school. The first time I saw Honey acting and singing on stage I couldn’t believe it. It was like looking at a different child. Her Aspergers leaves the building the moment she is on stage or in front of a camera. As a result her confidence is so much more improved and she still receives a place every summer and Easter at South Hill Park. Honey also had the lead in a short film “A Fathers Gift” and the lead in ‘The Kindest Label’, my Aspergers film.

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Tania: How is the diagnostic process in the UK?

Olley: The diagnostic criteria in the UK has well improved since I was younger. The doctors who diagnosed my two daughters were outstanding! Honey was diagnosed very quickly with Aspergers at 6 and Cherish was diagnosed with standard Autism at only 2 years (however I believe her to be more Aspergers). The criteria for teen girls, young women and adult women though I feel, is shocking. Female Aspergers looks so different to male Aspergers and women are still going misdiagnosed. Many of the Asperger traits look a lot like depression, anxiety and bipolar disorder but they are merely co-morbid conditions to undiagnosed Asperger Syndrome.

Tania: Has Honey’s diagnosis and the new research on female Asperger Syndrome caused you to seek a diagnosis for yourself?

Olley: My parents have been and always are very supportive, In the midst of my teenage rebellion they sought help for me after I refused to go to school, spent hours alone in my room and had full blown tantrums (better referred as ‘meltdowns’). The doctor they saw called me lazy and washed his hands of me. After the routine of marriage I felt I was getting more and more anxious again, and with the fact I had two daughters on the Spectrum made me seek my diagnosis at last. The doctor I saw said on paper I was very Asperger’s, scoring sky high on a paper test. The Doctor however insisted that I couldn’t possibly be Aspergers on the basis I spoke about acting a lot (apparently people with Aspergers can’t act) and the fact I maintained eye contact (I stare).

I don’t know what he expected me to look like? Perhaps wearing a anorak and reciting train time tables (I do actually own an anorak and yes I do know the London train route a little bit too well but I also know not to make it common knowledge)?

I found it a puzzle as Honey is a great actress yet she is Aspergers? I wondered if females and males on spectrum presented differently. I went onto Google to research the differences in male and female Aspergers. The criteria felt like someone had watched me from birth and taken notes. I felt a rush of relief and sent it to as many friends as possible. I know in my heart I have Asperger’s, and I will now gain an official diagnosis outside the UK. My aim to do this isn’t to get support or services perse. I am 31 now, I cannot get my schooling or teen years back. It’s not even to let my inner rebel have her day and wave it in the face of the UK doctor who said Aspergers people can’t act. It is because, at last, I have my identity, my missing puzzle piece and above all I am proud of whom I am and that is an Aspienwoman, an adult female with Asperger Syndrome.

Tania: How do you think having Asperger Syndrome helps in terms of being a great actress or actor?

Olley: Females with Aspergers don’t make good actors, they are BORN actors. Neurotypicals spend thousands to learn method acting at university, but female Aspergers method act, without even knowing from day one. They are chameleon, watching people’s actions, mannerisms, accents and language and mimic this to get by, to socialise, to communicate. Acting is an Aspien girls second language, almost like being bilingual.

Tania: Now, not only have you made a movie about female Asperger Syndrome, but you mentioned earlier you have written a book entitled ‘Why Aren’t Normal People Normal? A Girl’s Survival Guide to Growing up With Asperger Syndrome’.

Olley: Yes, I have just finished it this past weekend and it is more of a guidebook for girls, in terms of what will help and support them as they develop.

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Tania: Where can people purchase your book?

Olley: I am just now putting the final touches on my book. Once that is done, people can purchase it. I will let you know the details once we have it all set in place

Tania: It has been a real pleasure to interview you and you are such an inspiration to the many females with Asperger Syndrome. Thank-you for a fabulous interview and for doing what you do for the many females all over the world with Asperger Syndrome.

Olley: Thank-you for interviewing me and providing a platform like this where people can and learn more about female Asperger Syndrome, mentors, information and resources.

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Tania Marshall©. 2013. AspienWoman Interview Mentor Series. All rights reserved. Duplication in whole or part is explicitly forbidden. Thank you.

Autism Interview Series: The United States of Autism Movie

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Recently, I had the pleasure of interviewing an amazing man who travelled all over the United States of America, to provide awareness, advocacy and education about Autism Spectrum Conditions. His efforts and his movie provide a poignant movie about how Autism affects families across America. Please meet Richard Everts.

Tania: Congratulation on a fabulous movie! The United States of Autism is a movie that spans 11,000 miles, 5 first languages (English, Arabic, Spanish, Korean, and Chinese) and 20 families. Could you please tell us how this movie started and it’s evolution to now (where is being shown in movie theatres all over the United States of America)? As the Director of the movie, how did you become involved in this amazing project?

Rich: My son is on the ASD spectrum, and so I have a first-hand look into the spectrum with all its joys and challenges. For the film, my crew and I travelled 11,000 miles around America in 40 days interviewing families and individuals affected by autism. We captured about 100 hours of footage, and broke that down over the course of 20+ revisions and 2 years into the finished 90 minute product you’ll be able to see soon. Today, it’s taken a life of its own. We thought we’d do a small 40-city run in the US and that would be it. Now, we’re scheduled for almost 100 screenings, and requests are coming in from the UK, Canada, Australia, South Korea, and more. We’re beginning an Oscar qualification run this summer and hope that we can qualify to be in LA for the 2014 Academy Awards.

Tania: How did the movie land the Pepsi Refresh Project?

Rich: My wife and I started a Foundation in 2005 that supports families and individuals affected by autism. At the end of 2009, we began to look for opportunities to expand the reach of organization on a national level, and thought creating a film might facilitate that process. So, we entered our idea into the Pepsi Refresh Project contest in February of 2010, the first month voting would be allowed. The top 10 ideas in each category would receive funding, and our first month we failed in the last week by dropping to number 12 from 8. Luckily, that meant we qualified to re-enter automatically next month, and we made sure to qualify in March of 2010. After 59 straight days of a massive social media campaign, we placed 8th out of 10, and the rest is history.
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Tania: Please tell us about Tommy and the Tommy Foundation? How did the Foundation get started and/or become involved in the movie?

Rich: Tommy is now 14 years old and the inspiration for the Tommy Foundation. He’s on the more severe end of the autism spectrum, yet he still will sit through the entire movie whenever we play it! While most of our mission at the Tommy Foundation includes activities and events for families and individuals, we do awareness projects from time to time and this was a great way to help with the overall autism movement.

Tania: How did “The Refresher”, at 3 years old, get involved in helping you promote the movie?

Rich: He’s one of the children of a local family in the film, and he was excited to play a part in helping make things happen. We had a whole green screen setup at our home, and filmed 2 videos with him in it. I would say that he was one of the great inspirations for the contest, and as a non-union actor he was worth every penny.

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Tania: How many families did you interview and what did you learn from them?

Rich: We interviewed 21 families and individuals affected by autism, and we learned a ton from each of them. One of the challenges with the film was of course reducing hours spent with every family to 3 minutes of footage; so unfortunately, we lose something in the translation to the screen. However, each family or individual presented a unique lesson to me as I travelled, and I’m thankful for that experience.

Tania: What is the message of the movie?

Rich: One of the great things about the film is how we incorporated the American experience into the story. We have a wide variety of religions, ethnicities, races, socio-economic statuses, and more in the film and autism reflects itself in those threads of society similarly. While part of the message is a unifying one for the autism movement, a part of it is a unifying message for the US and world as well.

Tania: What kind of response and feedback are you getting from organizations and people who have seen the movie?

Rich: The feedback has been astounding, even to us who produced it. We’ve had so many tears, laughs, and stories it would be impossible to put them all down. There are some controversial things in the film of course, yet without a doubt we’ve made huge impact wherever we’ve gone, especially as we’ve donated 25% of net ticket sales to a local organization/family/individual wherever we’ve had a showing. Change happens at the local level, and we’re enabling people to make a difference in their communities.

Tania: Where can people find out more information about the movie (website?; YouTube?; Facebook? ; Other?)

Rich: The best way to follow the film is at http://www.usofautism.com/, or our twitter @usofautism. We’re also on Facebook: https://www.facebook.com/pages/The-United-States-of-Autism/225733958739

The official page to read more about the film and it’s availability is here: http://www.janson.com/rights/2013/03/06/the-united-states-of-autism/

Tania: Do you plan to follow the families into the future? Do you have any further plans, possibly a second movie?

Rich: This first movie was incredibly exhausting to put together on such a small budget having put in over 4000 hours just myself, so I’m ready for a little break. However, I would say that perhaps in 10 years I’d like to maybe do a small 30 minute follow-up with each family for posterity’s sake. An “Autism Around the World” film would be great to put together as well, and we could make an incredible movie out of it. I think I’d need more than $50k to make that happen.

Tania: When might we be able to view The United States of Autism movie here in Australia, or in other countries?

Rich: We’re working on it. We’re a small operation, so converting everything to PAL can take a while. If anyone wants to send some good vibes and a few coins our way to help speed up the process, I won’t turn them away! I expect a Blu-Ray/DVD release in Fall of 2013, and hopefully can arrange a movie run Down Under in Australia this summer.
Tania: Thank-you Rich for allowing me to interview you about your fabulous movie. We are looking forward to future Australian screenings.
Rich: Thank-you Tania for the interview and your support. I will keep in touch with you about future screenings, further movies and the families.

The official page to read more about the film and it’s availability is here: http://www.janson.com/rights/2013/03/06/the-united-states-of-autism/

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Tania Marshall©. 2013. All rights reserved. Autism Interviw Series. Duplication in whole or part is explicitly forbidden. Thank you.

Professor Temple Grandin June 2013

Professor Temple Grandin June 2013

Nova Pathways to Employment Conference and Up Close and Personal Luncheon

Professor Temple Grandin is unquestionably the most famous person in the world with Autism who writes and speaks about Autism. I have admired her for many years and was absolutely honoured to meet and have a one-on-one chat with her about DSM5, her movie, piracy and Netflix, a strengths-based approach, employment, and more! She is also a very funny lady who tells professionals not to google themselves (after reading a variety of negative and/or misrepresentating comments about herself or what she has written or said), cracks jokes about her own brain scans and is highly entertaining and intelligent.

This past weekend Professor Grandin discussed life skills, strengths and employment as one of her biggest concerns for individuals with Autism. She asked me what I thought of the DSM5 changes and agreed that the term “Aspergers” should have been left inside the diagnostic criteria. She shared with me her thoughts on the unavailability of her movie “Temple Grandin” in certain countries, her thoughts on piracy and torrenting, Netflix, strengths-based work and assessment, employment and life skills. She told me she believes that those boys that are spending incredible amounts of time on video games, should start to learn how to make them.