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No.1 on Amazon!

Tania Marshall - Wednesday, July 02, 2014

Well I have some exciting news!



That's right we are now No.1 on Amazon!

If you would like to know more about this Amazon best seller check out the following page for more details:

www.aspiengirl.com/about_the_book

Professional Interview Series: Professor Uta Frith

Tania Marshall - Friday, November 08, 2013

This is the first in a series of interviewing professionals in the area of Autism, Aspergers and related conditions. It is with great honour that I was given the opportunity to interview Professor Uta Frith.

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Tania: Welcome Professor Frith and thank-you for agreeing to an interview with me. I am honoured to be interviewing a world expert on autism spectrum conditions. What attracted you to make a career in cognitive neuroscience and Autism?

Professor Frith: In the 1960s, when I started out as a PhD student, autism was hardly known and cognitive neuroscience did not exist. I had now idea that my career would take me deep into these mysterious directions. I suppose it was the very mysteriousness of autistic children, which attracted me to study them.

I was interested in development because I had been very impressed by lectures on Piaget by Ernst Boesch, Professor of Psychology at my University, Saarbrücken. Also at that University I was able to attend amazing Ward Rounds where different psychiatric cases were presented. This experience made me very curious about the mind and what was normal and what abnormal. I naively hoped that studying children at young ages might bring me closer to origin of the mind.

I was very fortunate to train in Clinical Psychology at the Institute of Psychiatry, a happening place in the 1960s, the place where Behaviour Therapy was pioneered. I intended to find a way to do research from the very beginning: It was very clear to me that we were distressingly ignorant about the mind, and that research was a necessity rather than a diversion from clinical work. Fortunately, I was able to get to get to know cases of autistic children at the Maudsley Hospital under the guidance of Michael Rutter, who was then already widely respected as an authority on autism. His PhD student, Lawrence Bartak, an Australian, and I were contemporaries and often worked side by side in the very first established special schools for autistic children. We felt that the teachers were doing a fantastic job. The children seemed remarkably similar to us, no matter what school they went to. But we often wondered what to make of those few autistic children who stood out from the others because they were not just clever but they had excellent verbal abilities. How did they fit into the picture?

 

My mentors were the experimental psychologists Neil O’Connor, an Australian, born in Kalgoorlie, and Beate Hermelin, born in Berlin. They were pioneers of the psychological study of mental retardation. They were among the first psychologists in the world to ask whether autistic children differed in their cognitive abilities from those of other children with intellectual disabilities and whether neurophysiological measures, such as EEG, would tell us about their brain function. They were way ahead of their time. Their work opened amazing possibilities to understand the nature of autism by teasing apart abilities and disabilities.

 By good fortune, Lorna Wing worked next door in the Social Psychiatry Unit. As the mother of an autistic girl, Susan, she had unique knowledge of autism and already at that time questioned Kanner’s rather narrow diagnostic criteria. She was convinced it was possible to distinguish in even the most intellectually disabled children those who had the ability for reciprocal social interaction and those who did not. I myself was not sure I could do this, and was more confident when the children had some language and showed some islets of ability. Here really was a form of autism that I could instantly recognise, a rare form as it turned out.

 The neuroscience of autism only started in the 1990s when it had just become feasible to use scanners to look at the signs of neural activity (as reflected in blood flow) in the living thinking brain. Here the collaboration with my husband, Chris Frith, was the vital link. Without his know-how and his expertise I would never have dared to enter this exciting field.

Tania: You received your PhD in 1968. Since then, can you please comment on the changes and the explosion of knowledge and research in the field of Autism?

Professor Frith: Knowledge about autism has accumulated steadily. A number of TV programmes were shown that portrayed a rather bleak view of autism, but they increased awareness. When the film “Rainman” came out in 1988, it was probably the first time that autism had been presented in an adult, and also presented as not all-bleak. It also made people aware of some very positive qualities. I don’t mean the savant skills here, although they do create permanent sense of wonder, but I am thinking of the lovely emotional naivety of Rainman that contrasted with the devious machinations of his non-autistic brother.

One of the unstoppable changes in the conception of autism was the recognition of atypical cases and cases that were not learning disabled. The term autism spectrum and the term Asperger syndrome had been introduced by Lorna Wing, who long wanted to push apart the narrow categories of autism. At the same time, Michael Rutter and Susan Folstein pushed apart these categories as a result of their famous twin studies. In these studies it became clear that when a narrow definition applied to one identical twin, the other twin very likely had a milder form of autism too. In fact they found that there was a 90% concordance in identical twins, if the criteria of autism were broadened. This was ground-breaking work not only because it broadened the category of autism, but even more importantly, it established that there was a genetic origin. Only then could a psychogenic origin be ruled out decisively – i.e. the idea that autism was a withdrawal resulting from profound rejection. This pernicious myth was at last eroded.  

 One of the biggest changes in the awareness of autism, in professionals and the general public alike, was the rise of Asperger Syndrome. I edited a book in 1991, which contained my annotated translation of Hans Asperger’s original paper. It was surprising to me how eagerly it was received. One of the unanticipated consequences was that the diagnosis of Asperger syndrome became fashionable, so that a number of people with successful lives began to diagnose themselves and even famous figures from history. But being a geek and being socially inept are not sufficient. I think there is a big difference between having an autism spectrum condition and being a shy, unconventional and obsessive.

 The new DSM-V has abolished the diagnosis Asperger syndrome. It still needs to be seen what the consequences will be, but I tend to think this is the right move. The label served its purpose in raising awareness of the autism spectrum. There is after all general agreement that it is a variant of autism and part of a very heterogeneous collection of autistic conditions. The difficult task ahead now is to see whether it is possible to identify subgroups hopefully, in terms of neuro-cognitive phenotypes.

 

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Tania: Please tell us about Theory of Mind, the theory that you developed along with Alan Leslie and Simon Baron-Cohen, in the 1980′s. How do the brains of people with Autism and people without Autism differ in terms of Theory of Mind?

Professor Frith: I think the history of Theory of Mind research needs a historian. I feel rather too involved and will not be able to give an unbiased account. In my view, the first part of the story is to do with two Austrian psychologists, Josef Perner and Heinz Wimmer, who devised an ingenious test. This test could show whether a child attributed a belief to another person, i.e. an invisible mental state, and whether the child predicted what another person would do next on the basis of the belief. It had to be a false belief rather than a true belief. In the case of a true belief you can’t tell whether the other person acts on the basis of a real physical state of affairs or an invisible mental state of affairs, because there is no difference. But in the case of false belief there is.

The next part of the story brings in Simon Baron-Cohen who had started his PhD at the time and who did the first critical experiments. Alan Leslie acted as co-supervisor and had already been thinking about the importance of invisible mental states, such as ‘pretense’ in the make-believe play of very young children. This was very exciting to me as I knew from a study by Lorna Wing and Judy Gould that autistic children showed very poor pretend play compared to non-autistic but intellectually disabled children.

 Now I must mention Tony Attwood, who did his PhD at the same time, but quite independently, and conducted a different and most interesting study. He asked how well – if at all – intellectually disabled autistic and non-autistic adolescents use nonverbal gestures. The results were very surprising, since at the time most people expected that autistic children would not use gestures in any meaningful way. But they fitted in beautifully with the Theory of Mind hypothesis: The intellectually disabled autistic children were well able to use gestures instrumentally, i.e. to get something, but much less able to use gestures expressively, i.e. to communicate an inner feeling state.

 The story heated up as we did the first PET studies, with trepidation, and with a number of eminent collaborators.  Obviously only very able and very brave adult volunteers took part. One of them was Heinz Wimmer. The autistic adults came from the clinic of Christopher Gillberg and Stefan Ehlers in Gothenburg and were scanned at the Hammersmith Hospital in London. Here we compared what happened in the brain when people were reading Theory of mind stories compared to Physical stories, invented by another of my now famous PhD students, Francesca Happé. When PET was replaced by MRI scanners, many more studies were carried out, and many different tests were used, frequently invented by Francesca Happé. For example, cartoons that either depicted jokes that required a mental state attribution compared to jokes that did not. Perhaps most successfully, we contrasted short movies where animated triangles interacted with each other. In some of the movies the viewer can’t help attributing mental states to the triangles, but in others, where the triangles move randomly, such ‘mentalising’ is not spontaneously evoked.

 Many labs all over the world have used neuroscience methods to study Theory of mind in the brain, in autistic and non-autistic people. It is still very surprising to me that one particular network of brain regions comes out again and again as being primarily involved. This network reliably encompasses regions of the anterior medial prefrontal cortex and the superior temporal sulcus at the temporo-parietal region; but there are also other but seemingly more variable regions involved.

Tania: Please tell us about your current ideas and theories on Autism today, in 2013?

Professor Frith: I continue to be fascinated by autism and by theories that try to explain the core features. I believe that the Theory of Mind hypothesis has had to be updated, in such a way that we distinguish between unconscious and conscious mentalising. I now believe that it is the unconscious type of mentalizing that is somehow failing in autism, but not the conscious type.

 Here is the problem: Why do able autistic adults who have learned to mentalize and pass all known Theory of Mind tasks, nevertheless still show the sort of interaction and communication problems in everyday life, the very problems that are supposed to be due to poor mentalizing ability. Do they not have real mentalizing ability, or is the theory wrong?

 A study that I did with Sarah White (my last PhD student), Atsushi Senju and Victoria Southgate, a few years ago, tried to answer this question. In this study we used anticipatory eye gaze to assess unconscious mentalizing, and this  distinguished autistic from non-autistic participants. Neurotypical individuals anticipated in their eye gaze where a character would look for a hidden object on the basis of the character’s mental state. But there was no such anticipation in the autistic adults. So we can reason as follows: in everyday life fast interactions are the norm, and here the unconscious form of mentalizing matters more than the conscious form. However, there clearly are advantages to having conscious metalizing – what precisely are these advantages? New research is needed.  

 Perhaps the most surprising part of the story of Theory of Mind is that such a complex and high-level cognitive ability as mentalizing, i.e. “attributing hypothetical mental states to others and predicting what they are going to do next”, is actually quite basic and has a signature in the brain.

Tania: I am very interested in the female phenotype of Autism. Could you please tell us your thoughts on the gender differences between males and females with Autism? Clinical anecdotal evidence suggests that females are not being diagnosed until much later in life or misdiagnosed with other disorders. Could you comment on this please?

Professor Frith: I believe this question has at last attracted enough attention so that interesting papers are now appearing that are trying to provide some answers.

 The gender difference in autism has fascinated me for a long time, but I never got a chance to study it. My favourite hypothesis for long has been that there is a special protective factor in being female and a risk factor in being male. This goes with the finding that in most neurodevelopmental disorders there is an excess of males. There are a greater number of boys who have dyslexia, or conduct disorder, or attention deficits.

I wish there was more evidence as to the way autism is expressed in the behaviour of females. There is an idea that girls are more likely to conform and more likely to be compliant. I don’t know whether this is the case, or simply an expectation that is part of the stereotype of being female. In either case, affected girls would less often be considered in need of clinical help. They can ‘pass for normal’ as we know from the gifted women who lucidly write about their autism.

Tania: Please share with us what work you are currently involved in?

Professor Frith: I retired in 2006 and have no longer a research group or students. So what I am doing is not work.

At Aarhus University I am fostering a highly inclusive autism network. This is to provide a forum for discussion involving people with autism, parents, teachers, clinicians and researchers from neuroscience, epidemiology, psychiatry, brain pathology, anthropology and so on. I am hoping to facilitate research by bringing together people from these different backgrounds, who bring a refreshing perspective, and can offer new ways of answering persistent questions.

 I am still writing papers with colleagues, some based on work done some time ago, but fewer and more slowly, which gives me rather more pleasure. I have to confess that sometimes I am a ‘free rider’, that is a co-author who does far less work than the others. I am still very interested to read about new research and I am particularly happy if I see publications by my wonderful former students and colleagues, who are vigorously advancing the field.

Apart from this I have other interests too, for example, promoting women in science, thinking about how neuroscience might provide some tools and some insights to improve education.   

Tania: Could you please comment on the research related to brain imaging and Autism? What are your thoughts on Temple Grandin’s brain imaging results?

Professor Frith: I loved being involved in brain imaging studies. It was exciting, but we were still very much at the beginning of the development of the method, and we did all studies with rather small numbers of participants. Things have changed a lot: the techniques have improved and we can now trust them to be safe also for children.

 Still, brain imaging results are only as good as the experimental design that is used. More often than not, brain imaging studies are difficult to interpret because the statistical analyses of brain images is very complex and error prone.  The main misunderstanding is that the blobs you see on a brain are actual signs of nervous activity. This is not the case. The blobs are depictions of statistical differences and it is hard to get one’s head around this. Furthermore, the activity in nerve cells cannot be seen directly, all we see is increases in blood flow. The rationale is that the more active the nerves are the more oxygen they need, hence the more blood is flowing in their direction.

 Just like behavioural studies, brain imaging studies rely on pooling together data from many trials and from groups of people, basically to remove noise in the data and thus make them more reliable.

 This leads me to mention another misunderstanding: You can’t take one single person’s scan and tell from this whether they are autistic. This is true even when the scan is done in the manner of an X-ray, that is, they were just lying still in the scanner and you take beautiful photographs of the anatomy of the brain. With our present techniques you can discover if there are grossly deviant features, such as tumours or injuries. This is not the norm in the case of autistic brains. But there are subtle differences when you superimpose data from many brains on top of each other to compute reliable averages. Many such studies now exist, and they always report differences in lots of places, grey matter, white matter, cortical regions, subcortical regions and so on. But we don’t know what the differences mean. 

The Brain image of Temple Grandin’s brain does not look like that of other autistic people. It does not like the brain of a neurotypical person either. There are so many differences that it is difficult to name them all, but these differences are very difficult to interpret. Temple Grandin during her whole life has built up a number of important compensatory strategies, and these leave their imprint in her brain. If we had an image from her when she was younger it would likely look different from now.

 Incidentally, most images of autistic people look perfectly normal to the naked eye. Some brains are particularly large, but then some neurotypical brains can be large too.

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Tania: I hear you have become Dame Uta Frith. Congratulations and a well deserved title for you. For those of us here in Australia, could you please comment on the process of gaining the title of Dame and how that came about?

Professor Frith: This was a most unexpected and amazing experience, something that never ever crossed my mind. I have no idea how it came about as the process is shrouded in secrecy. Amazingly, some kind people must have believed in me and proposed me and never claimed the credit. So I do not know to whom I should show my gratitude. I have retained my German citizenship since I would have had to give it up to obtain a British passport. This did not seem right to me as my accent immediately reveals that I am German, even after 50 years of living in London. This means that my DBE is honorary. I can put the letters after my name, and I am immensely proud to be able to do this, but I should not be called “Dame Uta”, you know, just as Bob Geldof should not be called “Sir Bob”.  I received the insignia from David Willetts, Minister of Science, in a special and very nice ceremony on 31st January, where I was able to invite some of my family and friends. This was also my mother’s birthday, which I thought was a wonderful coincidence. There are only few occasions when ‘decorations can be worn’, but I did wear mine recently at a special Guest Night at Newnham College in Cambridge where I am an Honorary Fellow.

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

The Aspiengirl and Aspienwoman Project: Actress, model, singer, MarsOne applicant Asperchic Sybelle Silverpheonix

Tania Marshall - Wednesday, November 06, 2013
The Aspiengirl and Aspienwoman Project is devoted to showcasing females of all ages and from all walks of life, who live with a Spectrum condition.  In these interviews, I talk to mentor heroine Aspienwomen from a variety of countries about their lives, their gifts and talents and more. Actress, model, singer, MarsOne applicant Asperchic Sybelle Silverpheonix joins me from New York City, United States of America to discuss her life, talents and Asperger Syndrome. (Photos to be changed). A special thank-you to
Matthew Mcenery for getting me in touch with Sybelle. Thanks so much Matthew.
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Tania:  Hello Sybelle, Thank-you for agreeing to an interview and for joining alongside other cool Asperchics in the AspienWoman Mentor Project. It is fantastic having you here, not only because you are such a role model, but because you are the first MarsOne applicant I have interviewed. Thank-you for joining other cool Asperchics in the AspienWoman Mentor Project, a project designed to gather an inspirational group of females on the Spectrum who are successful role models and mentors.  Where about in the world do you live?Sybelle:  I live in New York City, United States of America.Tania: You have many talents. Please tell us about them.

Sybelle:  Oh, lol, where do I start. I work primarily in entertainment, if its art, I’ve probably done it at some point, lol.  My main career path is as an actress, singer, model, and dancer right now.  I’m a vocalist for the rock band Kings Valentine.  I also fix PCs.

Tania:  So, you really are a triple or quadruple  threat?!

Sybelle:  I suppose a “multi threat” is an appropriate term, haha.  I have a background in martial arts, gymnastics, and various styles of dance.  I also can do portrait sketches, self taught, have no idea how, I can just see all the details on a person’s face, all the shadows, the lines in the skin, right down to pores, it creeps people out, lol.  I can take a photograph, no matter how small, of a person, and duplicate it with all detail on a much larger piece of paper.  I can draw portraits in person, but people don’t usually stay still enough for me to do it.  My PC tech skills are for the most part self taught also.  I swore after the first time being on the phone with tech support and not understanding those crazy thick accents, that I would never call tech support again, lol.  This was my first impression of outsourcing, and I am absolutely opposed to the practice if it prohibits the smooth flow of information between people, lol.

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Tania:  How did you find out you were on the Spectrum?

Sybelle:  Oh wow, that is a story.  I was logging in to check my email and some email providers have articles that scroll across the screen when you first go to their sites.  One such article was titled “Whole Family Diagnosed with a Disorder”, and I was thinking, hmm, sounds interesting, so I click it, and the whole thing was practically my own biography! I was instantly obsessed with the topic of Asperger Syndrome!  I googled everything I could that instant, I called in family members to look, it was all quite dramatic, I felt almost like I had died!  Whole portions of memories of my life flashed before me as if I was having a near death experience, and those portions began to make sense in a matter of seconds!!! Then I was absolutely compelled to know from a professional if this was me, or if I was just jumping to conclusions….members of my family agreed it certainly sounded accurate.  More googling, only to be disappointed with what services were available for adults…it was as if the entire community on autism had this strange idea that autism just disappeared upon becoming age 18….very strange.  Heard all kinds of things from places I called. “Women don’t have that”, “You’re too high functioning”, “We only see children”, and a whole host of other stuff from the very obviously and numerously misinformed population working in the field…then I managed to find Dr. Lynda Geller.  I’d say she’s the top expert in the field in NYC.  I wish she could be cloned and placed in every facility that treats people with autism.  Our world would change so efficiently it would practically be instantaneous.  Glad that people like her, and you, are working to change the misinformation out there.  So Dr. Geller evaluated me, and it turned out I was 100% correct about myself.  This prompted me to observe similarities I had seen between myself and my daughter, and I then had her evaluated also, and she too was diagnosed.  Not with Asperger’s, but somewhere around HFA and PDD NOS.  Finding out all this was one of the best things to ever happen for us.  It opened up a whole new world I wished I could have been exposed to waaaaaaaay earlier.

Tania:  Well, that’s quite a story and great to hear of Dr. Geller’s work and expertise, for anyone in New York. I will also add her to my list of professionals around the world. You also mentioned your daughter. What talents does she have?

Sybelle:  She’s very creative.  She likes to take pictures, draw, paint, dance and sing.  What she’s really good at though, is physical fitness.  She’s very strong.  She’s fast.  She has no fear.  I would get criticized by parents in the neighborhood for allowing her to climb to the tops of trees, playground fixtures, stone walls, etc.  I would allow it, because I have full confidence in her abilities.  I recognized these skills early on.  At 4 months, she would stand while I held her hands, knees locked in place.  Around 2 months later, she was able to “koala” me, hanging onto me with her own hands and feet entirely unsupported by me.  Once she was able to walk on her own, a little before 1 year, she would climb anything and everything she could, and has never once fallen!  Sure, she’s fallen running after or away from someone, or tripping over an object during running, but she’s never fallen from climbing…she recently told me she’d like to rock climb a full wall.  I must test this interest next time I am at the Intrepid with her, at the rock climbing wall, lol. i believe she can get to the top with no problems at all.  People’s reactions will be interesting.  I too, am athletic, have reached the top of the same wall, and simply because I am female, had people gasping.  Imagine my almost 10 year old daughter, lol

SybelleMArsone

Tania:  I was already impressed by your accomplishments  but then I heard that you had applied for the “Mars One” Mission and I was like “wow”!  For those that do not know, Mars One is a not-for-profit foundation that will establish a permanent human settlement on Mars in 2023. So, once you go, there’s no turning back?

Sybelle:  I applied for this mission, yes, however, at the time of this writing, none of the applicants know if they have been accepted into the program or not.  There are 4 selection rounds.  Applying is only round 1.  We will know if we have passed onto round 2 by the beginning of 2014 most likely. One of my special interests is astronomy, has been since birth.  I knew things about astronomy as a toddler most kids didn’t learn till they were at least school age.

Tania:  Will your daughter go with you?

Sybelle:   She cannot go on the same exact mission I would be on if I am accepted for the 2023 launch.  If selected, I will be required to train for 8 years. All accepted applicants must do this.  All applicants must also be 18 years of age. She will be 18 by the time of launch.  After she has turned 18, she can apply for the next selection process.  There is not yet an option for people to apply as families.  All must apply individually.

Tania:  What it is about this Mission that inspires you to apply?

Sybelle:  I have always loved space.  Been fascinated by it.  I want to know it, experience it, live it, be one with it.  During the first half of my life, this desire became coupled with the fact that I felt completely unappreciated by people on this planet.  This fueled the interest even more.  I never thought in my lifetime there would be such an opportunity as to live on another planet, experience its different gravitational pull, terraform it, utilize its natural resources, live with solar power as a main source of power, create an entirely new society…I have wanted this since birth, I was engineered for this purpose.  And now I am being given an opportunity to try again…I wrote NASA in 5th grade.  They sent me gorgeous images of astrophotography and several astronauts of the time period who were on missions.  It excited me like nothing else could.  I attended US Space Camp during high school.  THAT was an experience.  The training, I loved it, I actually wish it had been more intense, more rigorous.  Mars One will do that…it will be the most rigorous training anyone has ever endured in the field of space travel and exploration.  And Space X, Elon Musk’s company, is also in communication with Mars One about transportation.  I am so phenomenally impressed by Mr. Musk’s work, and would be completely star struck should I ever get to meet him.  I don’t get star struck very easily, but that would be very overwhelming, lol.

Tania:  It really is like a movie. For those interested, how does one apply to be a part of the Mars One settlement?  I have a feeling you may not be the only Aspie that’s applying to move to Mars.

Sybelle:  Aaah, yes, I imagine so. Yes, a movie.  As an actress, I’ve worked on many genres, but still have yet to work on a sci fi project.  I would absolutely love to be a part of a sci fi project.  Especially if it puts me in space, lol.  It is my favorite genre, and yet, there seems to be a severe lack of sci fi productions in NYC, lol.  So yes, Mars One is the real deal, this is science fiction becoming reality, and if anyone else wants to walk through that door, they will need to apply.  Unfortunately, this year’s astronaut selection process is already closed. I believe the next will be in another 2 years or so.  The project will send 4 astronauts to Mars every 2 years starting in 2023, so based off that time frame, would be applicants should start looking for information on the Mars One website 2 years from now.  I do not know if the application criteria will be the same.  This year, it was necessary to fill out a resume form, write a motivational letter, answer a very personal questionnaire, create a video of yourself answering 3 questions about yourself and your interest in Mars One, and also pay an application fee equivalent to what it would cost to apply to a college. And you are definitely right about the other applicants…a LOT seem like aspies, a strikingly large number…

Tania:  How do you think Aspergers has helped you in your career/life?

Sybelle:  Aspergers is the reason I was able to learn and acquire information at the rate I have.  The reason I was able to successfully teach myself skills outside of an educational environment.  The reason I can solve technical problems quickly, have an effective sense of logic. Having a brain that functions similar to Spock or Data is most definitely advantageous, I just wish more people understood these advantages and that they have benefited from these advantages with each advancement in technology and various other fields.  In terms of career, on the film production side of things, I was able to put together all the systems we would need.  I have 4 computer systems, and have maintained all the computers here on my own for over a decade.  As an actress, echolalia is a good thing, for acting is the skill of imitation.  Learning to mimic the way others interact is paramount.  I have also done all my own marketing.  I built my own website, at least at the time of this writing.  I have been effectively using social media, which to me feels more natural than all the schmoozing that usually goes on, lol.  It was actually surprising to me when I saw that there were classes that taught people how to effectively market themselves through social media.  To me it was obvious.

Sybelle

Tania:   Where can people follow you or find out more information about you and/or your work?

Sybelle:  www.sybellesilverphoenix.com

I am also on Facebook, Twitter, Youtube, Model Mayhem, and IMDB.  Here are the links, respectively:

https://www.facebook.com/pages/Sybelle-Silverphoenix/143040925715

https://twitter.com/SybelleSilver

http://www.youtube.com/user/SybelleSilverphoenix

http://www.modelmayhem.com/1381118

http://www.imdb.com/name/nm2655690/

For  interviews go to:  http://www.imdb.com/name/nm2655690/externalsites?ref_=nm_ql_rel_4

Tania:  Where can people view your somewhat humorous yet serious MarsOne application?

Sybelle:  The Mars One application is on the Mars One website, at http://www.mars-one.com/en/. I uploaded my application video to YouTube because other journalists said it was easier for them to link to in their articles.

On YouTube at http://applicants.mars-one.com/profile/8d485a78-46c4-4152-93cc-3a015d4df694

Tania:  What kind of advocacy are you involved in?

Sybelle:   I have become very interested in giving exposure to autism awareness and acceptance.  I’ve recently had an article published by AHA’s newsletter On The Spectrum about where Aspies can go to meet compatible people. The same organization has asked me to participate on a panel of adults who have had interesting career evolution’s. This will be for the 2014 Autism conference at Adelphi University in April. I have also participated on a panel for GRASP about Spectrumites in their communities of faith. I am also working on assisting GRASP with starting a support group in the boro of NYC that I live in.

Tania:   Sybelle, I want to thank you for your time and for being a mentor Asperchic role model and part of the AspienWoman Mentor Project. You are inspirational and I wish you all the best with your application to take up residence on the Planet Mars. Very exciting!  Please keep us up-to-date on your achievements.

Sybelle:  Thanks for selecting me as a person of interest :) I hope that through those such as yourself, we are appreciated for the things we contribute to society, instead of being looked upon as being a mistake that must be corrected.

 

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

Sneak-A-Peek of I am AspienWoman: The unique characteristics of adult females on the Autism Spectrum

Tania Marshall - Tuesday, November 05, 2013

Have you ever wondered about a quirky family member? Maybe she is your partner, your mother, your grand-mother, aunt, sister, niece or even your teacher? You may have wondered why she seems “different”, ”odd’” or even “cool”?  Have you ever wondered why life seems, at times, so challenging for her?  She is very bright, has a superior memory and great sense of humour.  She finds other people, stress, emotions and organization a challenge and she often suffers from a “social hangover”. Her peers or friends gracefully met their milestones, yet she remains perplexingly both ahead and behind her peers.  

You may have wondered where she disappears to at family get togethers, only to be found playing with the children or animals. She may be the “black sheep” of the family, have unusual habits and be highly intuitive. She is an Aspien, a woman with Asperger Syndrome or High-Functioning Autism. She may be a high achiever, goal-oriented, perfectionistic, and quirky. And yes, she may be your local teacher, nurse, artist, musician, actress, model, or even your doctor.

An Aspienwoman may have unfinished courses or degrees or may have achieved her education later than her peers. She is very bright, however you can’t figure out why she is so disorganized or has difficulty managing her emotions or stress. She is a high achiever with a collection of asperpowers that help her reach any goal she has her mind set on.

An Aspienwoman has a unique constellation of aspienpowers, super-abilities, strengths and challenges. She often feels as though she is from another Planet. If you are looking for a book on the often perplexing and unique adult female Autism Spectrum traits and characteristics, then this is the book for you. Watch for ’I am AspienWoman™, coming soon.

Q: What does “Aspien” mean?

A: The terms ”Aspien”, Äspiengirl”, “Aspienwoman”, “Planet Aspien”, and it’s derivatives were recently created and trademarked. This terminology came about from years of working with females, of all ages, on the Spectrum, who most often talked about feeling different, feeling like they don’t belong and/or are from another planet, universe, time zone or era. A book series is a natural progression from my clinical work.  This book series is an answer to the current gender bias and educates the reader about females on the Spectrum who are also known as “research orphans” (Klin).

Q: What are Aspienpowers?

A: Aspienpowers are a unique set of strengths often seen collectively in females with high functioning autism or asperger syndrome

This book will be available on Amazon, in E-book and on http://www.aspiengirl.com (under construction). Each book includes a list of characteristics, traits, strengths and challenges, a table, and more!

The first book in my series is entitled ”I am AspienGirl: The unique characteristics of young females, with Asperger Syndrome”, coming soon!

Tania Marshall 2013.  All rights reserved. Duplication, in whole or in part, is explicitly forbidden. AspienGirl™ and Planet Aspien™ are registered and trademarked names. Thank you.

Sneak-A-Peek of my first book, I am AspienGirl™: The unique characteristics of young females on the Autism Spectrum

Tania Marshall - Saturday, November 02, 2013

I am AspienGirl™:  The unique characteristics of  young females on the Autism Spectrum

Have you ever wondered why she said she felt different to her peers? Have you ever wondered why life seemed so hard for her? Her peers just seemed to gracefully and naturally meet their milestones, yet she seems perplexingly both ahead and behind her peers?  She had reached some developmental milestones early and some late.  She may have spoken and read early. Maybe at age four she was teaching herself to read as you drove down the road by reading street signs. She may have been an overly active child, had sensory issues, or had a speech delay. You knew she was bright from early on, with a sprinkle of some anxiety, eating issues (possibly an eating disorder), yet the professionals just couldn’t come to an explanation that completely fit her. She may have grouped her toys in colors, kept them in perfect order, set up her toys in a complex manner, and getting upset if people move them or take them.  She may be very artistic, whether she sings, draws, paints, writes pages of words, at times seemingly too mature for her age.  Yet, she struggles socially and emotionally. You notice her mimicking or copying her peers or siblings, often acting like whoever she has been with that day. She may have friends, however she dictates the play and the rules.

Image

She may be ten years old now, yet none of your research completely fits or maybe you have just now come across some information on female girls that completely makes sense to you.  Maybe she is ”Aspien”, a young female with Asperger Syndrome or High-Functioning Autism. She has a unique constellation of super-abilities, strengths and challenges. She feels as though she is from another Planet, Planet Aspien. If you are looking for a book on the often perplexing and unique female Autism Spectrum traits, then this is the book for you. Watch for ’I am AspienGirl™, coming soon.

Q: What does “Aspien” mean?

A: The terms ”Aspien”, Äspiengirl”, “Aspienwoman”, “Planet Aspien”, and it’s derivatives were recently created and trademarked by me. This terminology comes from years of working with females on the Spectrum, who most often talked about feeling different, feeling like they don’t belong and/or are from another planet, universe or time zone. A books series is a natural progression to my clinical work. After working with hundreds of females (and males) of all ages, it’s time to start writing. This book series is an answer to the current gender bias and educates the reader about females on the Spectrum who are also known as “research orphans” (Klin).

This book will be available on Amazon, in E-book and on http://www.aspiengirl.com (under construction).  Each book contains a list of characteristics, traits, strengths and challenges, including a table, and more!

The second book in my series is a natural progression of the first and is entitled ”I am AspienWoman: The unique characteristics of female adults with Asperger Syndrome”, coming soon!

Tania Marshall 2013.  All rights reserved. Duplication in whole or part is explicitly forbidden. Thank you. AspienGirl™ and Planet Aspien™ are registered and trademarked names.

Female Aspergers in Translation

Tania Marshall - Sunday, October 27, 2013

Female Aspergers in Translation

A number of people from various countries have contacted me and requested to translate my writings into their languages. This “working” blog post will supply links for those who read or prefer a language other than English. There are several links that I need to track down and add here in this section. If you are wanting to translate my writings, please contact me on: tania@centreforautism.com.au

Thank-you to the following translators who offered their own free time and energy to make my writings available.

1.  Spanish – Thank-you Manuel Cedeno

https://www.facebook.com/note.php?note_id=229148560581502

https://www.facebook.com/notes/manuel-cede%C3%B1o/mujeres-con-

s%C3%ADndrome-de-asperger-autismo/229148560581502

2.  Chinese  - Thank-you to Feng Zheng for translating

http://article.yeeyan.org/view/25266/384642

3.  German (Thank-you to Eva Nerling)

http://widerdiedummheit.blogspot.de/2013/06/ich-bin-ein-aspiegirl-weibliches.html

4.  Italian coming soon and thank-you to Alessandra Merizzi

5.  Swedish coming soon and thank-you Cecilia Lager 

Dutch – Coming Soon!

More to Come!

The Aspienwoman Interview Series Project: Violinist Lydia Tay

Tania Marshall - Saturday, October 26, 2013

The Aspiengirl and Aspienwoman Project is devoted to showcasing females of all ages and from all walks of life, who live with a Spectrum condition.  In these interviews, I talk to mentor heroine Aspienwomen from a variety of countries about their lives, their gifts and talents and more. Violinist Asperchic Lydia Tay joins me from Singapore to discuss her life, talents and Asperger Syndrome.

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Tania: Hello Lydia, thank-you for agreeing to an interview and for joining alongside other cool Asperchics in the AspienWoman Mentor Project, a project designed to gather an inspirational group of females from around the world who on the Spectrum and are successful role models, mentors and heroines. I found out about you in my research on female Asperger Syndrome.

Tania:  Where abouts in the world do you live?

Lydia:  I live in Singapore

Tania:  How old are you?

Lydia:  I’m currently 17, but I’ll be 18 in 2 weeks.

Tania:  You are a musician.  When did you start playing the violin?

Lydia:  I started playing the violin late last February.

Tania:  Do you play any other instruments?  

Lydia:  I play the piano and I will be starting conducting lessons on the 3rd of November.

Tania:  When and how did you find out you have Asperger Syndrome?

Lydia:  I found out I have Aspergers Syndrome when I was 15. It was because of a slip up by my parents that I found out. They have been hiding it from me my whole life. However, I was only diagnosed about 2 years later.

Tania:  How is Autism viewed in Singapore?

Lydia:  Not a lot of people know what Autism is in Singapore. For those who know, many assume that we are loners who can’t do anything without help and support. There isn’t much awareness.

Tania: How do you think some of the traits of Asperger Syndrome help you in your career to date?

Lydia:  I would say that having really deep obsessions have helped me a lot because without obsessions, I wouldn’t have had such musicality and knowledge of classical music within a year and a half. Also, the ability to see patterns helps me to learn and memorize music.

Tania:  Yes, obsessions can be  wonderful in terms of becoming an expert in a talent or a hobby. Healthy obsessions are what I term Asperpowers and give people an edge over others. What are your musical  aspirations and goals?

Lydia:  I want to start an Autism Orchestra. This orchestra will have musicians on the Autism spectrum. I also have dreams to become a composer.

Tania:  Lydia, what fantastic goals you have of an orchestra and a composer. I have no doubt that you will achieve both of those goalsHow can people listen to your music and follow you?

Lydia:  I have videos up on YouTube, but only people with the links can view them. I have put some videos on a blog post in my blog though, so people who visit my blog can view them or they can ask for the links via my twitter account. They can follow me via twitter (@Lydia_Violinist) and they can view my blog (aspergerjourney.blogspot.com)

Tania:  What advice would you give to other young females on the Spectrum?

Lydia:  Do not be afraid to spread Autism awareness, given the opportunity to. If the person or people you’re trying to educate insists on being ignorant about Autism, let them be because they are missing out on the colour we bring into the world.

 Tania:  Lydia, how true and what beautiful words. Yes, Aspiens do bring colour to the world, which is what this Project is about showing the world what Aspiens can achieve. I want to thank you for your time and for being a mentor Asperchic role model and part of the AspienWoman Mentor Project. You are inspirational with amazing goals and thank-you for having this conversation with me. Please keep us up-to-date on your achievements.

Lydia:  Thank-you Tania for inviting me to be a part of this amazing Project and I will keep you up-to-date.

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

Aspienwoman Mentor Project Interview: Singer and Songwriter Maja Nilsson

Tania Marshall - Saturday, October 26, 2013

The Aspiengirl and Aspienwoman Project is devoted to showcasing females of all ages and from all walks of life, who live with a Spectrum condition.  In these interviews, I talk to mentor heroine Aspienwomen from a variety of countries about their lives, their gifts and talents and more. Singer/Songwriter and Asperchic Maja Nilsson joins me from Sweden to discuss her life, talents and more.

Tania: Welcome to the Aspienwoman Mentor Project. We are proud to have you join us? Where abouts in the world do you live?
Maja:  I live in Sweden
 
Tania:  How old are you?
Maja: 17
Tania:  You are a singer/songwriter/musician/music producer. When did you start singing and writing songs?
Maja:  I started writing songs at the age between 12-13 years old.
 
Tania:  When and how did you find out you have Asperger Syndrome?

Maja:  There was a classmate in primary school who had Asperger’s and I started to compare the symptoms to my own behaviour to see if I had anything similar.

Tania: What are Autism services like for you in Sweden?

Maja: A good example is that I’m in a special class for students with some kind of Autism diagnosis, we don’t have any homework as we do everything in school and go to lunch half an hour before rest of the school does. There is also a bad side that newspapers have blamed us for crimes and then “ordinary” people might get scared of us because we are seen as violent from the newspapers’ perspective.

Tania: I think it’s fair to say that the media has much power and unfairly pairs Autism and violence together. How do you think some of the traits of Asperger Syndrome have helped you in your career to date?

 
Maja:  Aspergers has helped me a lot to focus because of my sound sensitivity, I hear sounds all the time.
I also self diagnosed myself with Synesthesia, which means in my case I see sounds as dots and lines right in front of me which helps me even better to work.
 
Tania:  Synesthesia is a fascinating condition. Please tell us how seeing see sounds as dots and lines right in front of you which helps you work better?
Maja:  I literally see music in front of me which helps me know where to sing, for example.
Tania: That is fantastic and what a unique gift you have, Maja. It probably gives you an edge over other musicians. Now your first album is due out soon?
Maja:  There some songs left but I don’t have a deadline set (can’t handle stress that well).
Tania:  I believe Imogen Heap inspires you? For those that aren’t familar with Imogen, she is a UK born Grammy winning multi-instrumentalist and performer
Maja: Yes she has inspired me a lot by her way of sampling realistic sounds and also in her music genre. Another artist that also inspires me is the Icelandic singer Björk.
 
Tania: How do you think Aspergers has helped you in your career/life?
Maja:  It has helped me to become stronger as a person, from being teased some years ago to having supporting fans and friends who are curious about my music.
 
Tania: What advice would you give to other young females on the Spectrum?
Maja: I believe there is always a good solution to everything.
Don’t keep bad feelings inside you, then it would only hurt more.
Try to stay positive with who you are, because there is no one else like you in the world.
Tania: How can people listen to your music or buy your album?
Maja: My music is available to listen to and download for free on my SoundCloud account ( www.SoundCloud.com/MajaNOfficial )
Tania: Where can people follow you or find out more about you?
Maja: They can follow me on my website ( www.MajaNOfficial.Wordpress.Com ) or for smaller updates, on Twitter: Www.Twitter.Com/MajaNOfficial
 
Tania:  Maja, I want to thank you for your time and for being a seriously cool Asperchic role model and part of the AspienWoman Mentor Project. Thank-you for sharing your thoughts with us.
 
 
Maja: Thank-you for asking me to be a part of your mentor project.
Tania Marshall. 2013.  All rights reserved. Duplication in whole or part is explicitly forbidden. Thank you.

Aspienwomen Mentor Project: Professional Performer Chou Chou Scantlin

Tania Marshall - Thursday, October 24, 2013

The Aspiengirl and Aspienwoman Project is devoted to showcasing females of all ages and from all walks of life, who live with a Spectrum condition.  In these interviews, I talk to mentor heroine Aspienwomen from a variety of countries about their lives, their gifts and talents and more. Professional performer Chou Chou (pronounced Shoo Shoo) is a professional performer and producer from the United States and an Aspienwoman mentor, who advocates for females on the Spectrum.

 photo danny fowler                                                                                                               Credit: Danny Fowler

Tania: Welcome to the Aspienwoman Project and thank-you for agreeing to be interviewed for the “Aspienwoman Mentor Interview Series”.

Chou Chou: Thank you for inviting me! It is a pleasure to be part of this conversation.

Tania: I came across you in my research on females on the Spectrum. You are a professional singer, performer and you have Autism. How long have you known you were Autistic?

Chou Chou: Officially, about ten years, but, in truth, always, but without that specific label. I was born in the fifties, when little was known about autism and cold, bad mothering was considered the cause. My mother was the business administrator and close friend of a young doctor who ran an exclusive rehabilitative rest home outside New York City. He was very cutting edge, and up on the latest research, and took a special interest in my atypical development and behavior. He made the diagnosis. I adored him and the special attention he gave me. I was sure I would grow up and marry him. At the time, it was common for autistic children to be institutionalized, in part to protect the child from the “bad” parent. This “Refrigerator Mother Theory” of bad mothering causing autism has been long proven as wrong, but, because of this belief, it was considered a priority by the doctor and my mother to keep this label hidden. This was done in an incredibly successful manner, both for my protection, and for my mother’s reputation. My mother, unfortunately, believed she caused me to be autistic, and took this belief to her grave, living with much shame.

I was called “slow”, “simple”, and sometimes, but never by my mother, “retarded”. My brilliant mother took a different, very supportive approach. She called me a “late bloomer”, and told me I could do anything. She openly considered me uniquely wonderful just as I was, and constantly said that one day I would surprise everyone with the woman I would become. She was a wonderful, successful person. I saw no reason not to believe her!

Tania: Unfortunately and sadly, in my clinical work, I still see and hear mothers being accused of the “Refrigerator Mother Theory”. Your mother was a fantastic woman. Tell me how you became a professional performer? How long have you been performing for?

© Brian Coltrane All rights reserved                                                                                                              Credit: Brian Coltrane

Chou Chou: I am a fourth generation performer, and both my mother and father were in show business in their early adult years, leaving for more stable careers. I was speech delayed, but had an incredible memory. Once I started talking, I could parrot what I heard, and memorize long scripts taught to me. It was difficult to speak without a script, and the usual child’s play and conversation was nearly impossible. I was very withdrawn, but, if I was dressed up and given a script, I would light up! This was my vehicle for communication and connection, and I adored that. I put on small plays, said grace at our holiday dinners, and, recited poetry, and even went door to door in our neighbourhood, with my little ukulele, asking neighbours if they wanted me to sing them a song. I performed in school plays, getting lead roles, winning awards of various kinds, and was offered scholarships, but never wanted to be a professional performer. I wanted a more private life, with a home and family. There was always a struggle, because performing was the one way I could connect well, but it took so much out of me. I stopped performing many times, always saying I would never perform again, but something would happen, and there it would be, as my best choice for income and survival. Now, I have found the perfect balance, for me, of a private life and performing for a living, both, with my adored husband, Doc Scantlin. We have performed together for the last twenty years. I am the producer, vocalist, costumer, and co-creator of our show, and Doc is the band leader, vocalist, and music director, and inspiration. Over the years, we have performed internationally at some of the most prestigious balls and gala and have a loyal fan base in our home base of Washington, DC. We do not record or tour, and are not part of the standard popular music industry. We are not big stars, nor have we ever desired for what that would entail. We are blessed with a wonderful reputation, and keep a roof over our heads. You have probably never heard of us, although it always surprises me who has. We lead a modest little retro life, in a 1920′s cottage on the Chesapeake Bay, with the quiet, peace, and loving support that makes me thrive, and able to survive the excitement and fun of the shows. I am who I wanted to turn out to be, am very, very, happy, and never, ever, take it for granted!

                              Chou Chou and husband Doc Scantlin       

Doc and Chou Chou                                                                                                              Credit: Brian Coltrane

Chou Chou: I married at a young age, and had my beautiful son, but my first husband was in a car accident, had severe brain damage for five years, and then died. I raise my son backstage a lot, and found it easy to get steady work as a free-lance talent. I have a unique, high pitched, hyper-feminine voice that people find appealing. I sometimes think I use the singing part of my brain to speak, instead of the language part, because it is the stronger of the two. I am not a particularly great singer, but I sing to an audience as if it were a gift, and so it goes over well. Everyone likes a gift, and wants to be loved!  I can do that when I perform, and that alone, I feel, makes me a worthwhile professional entertainer to this day. I am a rather normal looking person, but I enjoy dressing up and creating a kind of vintage movie star illusion of beauty, which is a great skill to have in my line of work. I am rather fearless and comfortable with this, and can get rather blissfully over-the-top.  It is the more status quo, appropriate, day to day dressing where I hopelessly fail. No matter how hard I may try to “blend in”, I never have, and accept that I never will. At some point, I gave up the effort, and said, “Oh well, ‘To thine own self be true’”, and never looked back. I wear what makes me feel like me, with usually comically dramatic results for a particular occasion. I find it makes for much less stress, and makes me less awkward. Since it is genuinely me, and not just wanting to make a spectacle of myself, people accept it, but I often get more attention than I am wanting when not onstage. Oh well. Small price to pay for peace of mind. As was said of Holly Golightly in “Breakfast at Tiffany’s”, “She’s a fake, but she’s a real one!”.

© Brian Coltrane All rights reserved                                                                                                               Credit: Brian Coltrane

Tania: Was there a mentor and/or role model that helped you be the person you are today?

Chou Chou: I am unendingly grateful to so many people in my life who that advised and inspired me, but, without a doubt, it was my mother who gave me the ability to believe in myself and know that I may do things differently, but that I was very, very able, in my own way. My wonderful husband and son, too, inspire me endlessly.

© Brian Coltrane All rights reserved                                                                                                              Credit: Brian Coltrane

Tania: How does Autism affect you today versus when you were younger, say in your teens?

Chou Chou: Like most people, I have gained much wisdom and understanding over the year, both of myself and life. This is the reward of long living. I had many health issues and uncomfortable traits, that I was determined to understand, so I could accept, control, or eliminate them. I will often focus on an issue, and research it in depth, in order to find a workable solution. Sometimes there is no known solution, so I come up with my own. One by one, over many, many, years, and many failures, I have found a lifestyle and self-management that works for me. I am still an autistic woman, but I am a healthy, happy, and rather successful autistic woman, in my choice of life.

Tania: What kinds of “factors” would you say helped you become “successful”, as a female with Autism?

Chou Chou: I am often told that I work very hard at being “lucky”, and that may be true. I think everyone, autistic or not, needs to look at what their strengths are, no matter what their challenges, and accept that life can be very hard and uncomfortable, but that each of us has something to give, and can learn to give it, and in that, lies happiness. The factors that have made me find a happy life of my own making are:

  1. Being a visual thinker. If I can see it in my mind, I can create it in real life.
  2. Stubborn focus. I easily become immersed in a project, down to the smallest details.
  3. Finding everyone charming. This is a biggie. I am awful at reading expressions, or understanding social signals, and it was a cause of much stress. At some point, I decided that, since I was so awful at this, I would just assume everyone was charming and wonderful, and treat them accordingly. This was very hard to do, especially since I was so scared of people, but now I do it automatically. I learned that most people want to be considered charming and wonderful, and will try to prove me right! Granted, I do not advise unguarded, unsafe behavior, but, if someone is acting rude, I can remain unflustered, and offer them help, or, at least my internalized sympathy, while protecting myself. I have many friends now, and build good professional relationships. I do not socialize in the typical ways, and no longer feel I must do so. I don’t go around expecting everyone to understand, but, if the situation calls for an explanation, or a person deserves more information, I will explain and self-advocate. Then, people will prove, once again, they are, indeed, charming.

Photo1 Ben Powell                                                                                                           Credit: Ben Powell

  1. My ability to see patterns. It can appear that I have premonitions, but what is really happening is that I can see patterns develop, and so can predict outcomes, based on those patterns. That said, life is full of illogical twists and turns, and it has taken me much work to learn to stay strong and keep going when the pattern gets broken. I crave order, but chaos test my strength!
  2. Accepting myself as different, but not more or less, than everyone else. This is makes for good relationship building. That, and the ability to laugh at myself, and never at others.
  3. Having a clear understanding of what is truly harmful to me, and what to do to take care of myself. I am in the extreme hyper sensory range, even for an autistic person, and must make sure I am not put in a situation that is more than I am able to handle. I do not view this as any different from a person knowing their limits in other areas. We all have unique challenges, and there is no such thing as normal.
  4. NOT seeing myself as a damaged or sick person, or using autism as an excuse for getting out of things I find uncomfortable. I have things I can do very well, and some not so well…just like everyone else. I try to be brutally honest with myself about what I just don’t want to do, but should, and what can genuinely push me past my capacity, and cause harm. If someone wants me to do something that will put me in a harmful situation, I will refuse. They might as well try to get me to drink poison. I will not do it. If someone wants me to push myself a little further to achieve a goal, however, I hope I will always find the ’it’ in myself to try, and know the difference!

Tania: That’s fantastic Chou Chou. We are on the cusp of a knowledge explosion via way of research that focuses on females and includes females. What kind of advice would you offer other females on the Spectrum?

Photo Ben Powell                                                                                      Credit: Ben Powell

Chou Chou: Believe that your way of experiencing the world is as valid as anyone else’s. Life can be very hard when you experience it in a way most don’t understand, and you must find the courage to be yourself, and give the world the best of who you are. We each have an obligation and capacity to make the world a bit better daily, no matter how severely disabling we may find our state of being. Make this your goal, and you will always be happy. You do not need to sound, look, act, or live like anyone else, but, if you are true to yourself and give what is uniquely yours to give, and assume everyone else just wants to do the same, you will find a place where you are accepted and will thrive. You don’t have to be socially savvy, you don’t have to be good at conversation, and you don’t have to be pretty. You just have to see people as charming, and give them the gift of you, and that is the best gift of all!

 

Chou Chou Bunny

 

 

Tania: Where can people find out more about you or see you?

Chou Chou: Here: http://www.huffingtonpost.com/ariane-zurcher/autism-adults_b_1912430.html

www.docscantlin.com

Twitter: @docscantlin

Facebook: Chou Chou Scantlin

Also, we are honored that acclaimed photojournalist, Lucian Perkins, is soon to be completing a documentary about us, our band and our happy little autistic enhanced retro life. Lucian has made a trailer for the documentary. He is close to completing about Doc and me, our band, our little retro life, and how it all works so well with autistic me:)

I keep saying I will start a blog. I think I will, but, oh, life is so busy, and there are songs to be sung!

I also take breaks from social media. A girl’s gotta do what a girl’s gotta do! I hope the day will come when I can contribute more, and positively, to the understanding of being an autistic woman, and perhaps make it a bit easier for younger ones, finding their way.

Photo Anthony Neenan                                                                                                          Credit: Anthony Neenan

 Tania: What a fantastic photo by Anthony Neenan.

 Chou Chou : I love the photo (above). The spotlight blocks the extreme sensory challenge of a room, and puts me in a place where I can connect and love the charming, charming people, in a way I cannot do otherwise. It is the one thing I do well that involves people. All my other best skills are best done in solitude:)

Photo1 Mark A. Simonson                                                                                                       Credit: Mark. A. Simonson

Tania: Thank you Chou Chou. It has been an absolute honour interviewing you and thank-you for your time, words and being a part of the Aspienwoman Project.

Chou Chou: Thank you, Tania! Best of luck with all you do, and may YOUR dreams come true! As I say onstage, when I introduce myself, “Now, we are friends!”.

Chou Chou

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

AspienWoman Mentor Interview Series: Author, Advocate and TedX presenter, Jeanette Purkis

Tania Marshall - Monday, October 21, 2013

AspienWoman Mentor Interview Series: Author, Advocate and TedX presenter, Jeanette Purkis

Tania:  Hello Jeanette and thank-you for agreeing to become a Mentor in the Aspiengirl/Aspienwomen mentor Project. We think you are a fantastic role model and certainly have a lot to offer in terms of lived experience.

Jeanette: Thanks :)

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Tania: I first came across you when I read your book “Finding a different kind of normal”, I was amazed how much you had gone through in your short life and still be alive. I love stories of people overcoming challenges. You know what I mean?

Jeanette: My early lif was very troubled. I experienced a lot of difficulties when I was a child and a young woman. I didn’t really have a lot of support to help me make the right choices. I didn’t have a diagnosis until I was 20 and so my teenage years were very hard.

I’m very fortunate to have a lot of determination and motivation. This helped me to make some serious changes in my life when I needed to. Once I decided to change my life when I was 25, I simply set myself the goal of where I wanted to be and worked towards it. I remember when I was 25 thinking ‘I want a ‘real’ job and a mortgage.’ Eight years later I had both of those things. I came from being a homeless criminal to being a Masters graduate working in a high-paid professional job. I don’t think too many people could do that.

Tania: When you did receive the appropriate diagnosis of Asperger Syndrome? How had it changed your life?

Jeanette: I got my diagnosis from a psychologist – Vikki Bitsika – in 1994. I think I may have been one of the first adults diagnosed in Australia.

I’m very grateful for the diagnosis now, even though I didn’t like the idea of having Autism very much at first. It explains why I see the world the way I do and it is a huge part of my identity. I spoke at a conference on women and girls with Autism a couple of years ago. I was in a room full of other Aspergirls and I felt like I’d come home – we were all so alike. When I was a kid I thought I was the only person like me in the world. It’s nice to know that there’s a whole load of other ‘Jeanette’s’ out there too.

Tania: Tell us why it took a few years for you to come to terms with your diagnosis?

Jeanette: When I first got the diagnosis I didn’t want it. To me it was a way for my parents to make excuses about how I was and it was a confirmation that I was a ‘nerd’. At the time I was very keen on being ‘cool’ and belonging in the non-Autie world. I certainly didn’t want a diagnosis that essentially set me apart from the rest of the world. I thought the diagnosis meant that I couldn’t have friends or belong to a social group. Even though I was in denial about the diagnosis, deep down I knew it was right – I just didn’t want it to be.

As I grew older I learned to accept myself a lot more and at that point I accepted the diagnosis that went so far to describing my experience of the world. Three years after I accepted my Autism, I wrote an autobiography focussed on how the diagnosis had impacted on my life. And I’m more than happy to be a ‘nerd’ and an Aspie now. Some of the coolest people are nerds. In my opinion, a lot of the people who are the most awesome and amazing adults now had trouble fitting in at school.

Tania: What additional diagnoses do you have? How do you manage them and hold down a government job and write books.

Jeanette: I have a couple of ‘extras’ – the main one being a mental illness. I’ve had a number of names for this but it seems to be beyond definition to some extent. The current label is schizoaffective disorder but I suspect that may change over time. It means that I experience depression at times, hypomania at others and that I have had a number of episodes of psychosis – losing touch with reality and experiencing very scary things. It makes life hard – often a lot harder than my Autism does.It’s episodic, so I can be fine for a few years and then things get messy. It requires a large amount of insight to navigate life with Autism and this illness. I take a lot of medication which makes me sleepy (and fat). While sometimes I complain about having to take medication, I know that without it I would not be able to live the life I do.

I am very lucky in that I have a number of talents and gifts which make it possible for me to work full-time  – and write books on weekends – with Autism and a serious mental illness. I am very motivated and determined. I also have a lot of energy. I have dragged myself out of some very difficult situations in my life. I think that it’s been possible because of my immense determination. I’m very grateful to have these gifts. Even so, sometimes getting out of bed and going to work is very hard. On these days. I just try to focus on the positives and benefits of work. I am very rules-focussed, so if I build something like going to work or doing a set amount of writing into my life ‘rules,‘ it means I will almost certainly do that thing. For me, missing work, for example, is not permissible. I suppose it’s a way of making the most of my Autie attributes.

Tania: I recently watched your TEDx presentation and it was great. How was memorizing it?

TEdx pic 8

Jeanette: I recently delivered a talk to the TEDx Canberra 2013 conference on how to enable children and young people on the Autism spectrum to be resilient.

TEDx Canberra was one of the most amazing things I’ve ever done. There was a 10 month lead in time which made giving the talk quite nerve-wracking. I really wanted to do a good job with it as I respect the work of TED in delivering ‘ideas worth spreading’ to the world. It really was an honour to be selected to speak for TEDx Canberra. I still have trouble believing it happened! TED and TEDx like speakers to memorise their talks. I practiced mine about 100 times but I was still concerned that I would forget it or lose my place even up to 24 hours before the event.

In the end it worked out OK though. I had my notes in my pocket just in case I lost track of where I was up to, but thankfully I didn’t need to look at them.  When I started speaking, all those months of preparation paid off and I remembered everything I needed to. My talk was passionate and heartfelt and I would like to think it made a difference. Everyone said my talk was great and I think it may just have been the best talk I’ve ever done.

TEDx pic 2Tania: What are your plans for the future?

Jeanette: I’ve got a book called ‘The Wonderful World of Work’ coming out next year. It’s being published by Jessica Kingsley Publishers, who also published my autobiography, ‘Finding a Different Kind of Normal’. The new book is an activity book which includes personal stories, cool cartoons and fun activities. It aims to prepare teenagers on the Autism spectrum for employment and show them why it is cool to have a job. The book demystifies the world of work and emphasises the positive attributes that employees on the Autism spectrum have. I really hope this book makes a big difference and helps Asperteens to see their own skills and positive attributes in relation to work and forge a great career for themselves.

Jeanette PurkisI’d obviously like to keep writing more books into the future. I’ve even got one underway at the moment – my first serious foray into fiction. It’s a collection of short stories based on dreams and delusional thoughts I’ve had. They’re mostly based on supernatural or horror-based themes. The feedback I’ve had on this from my unofficial critics (my parents and one of my work colleagues) has been very positive.

I’d like to do more around mentoring young women and girls with Autism and helping them to achieve their full potential.

I’d also like to travel. I’ve never been to the US and have always been completely fascinated with American culture. Maybe I could do a book tour when ‘The Wonderful World of Work‘ comes out….

 

Tania: Jeanette, it’s been a pleasure interviewing you and you are an inspiration to many females out there who are self-diagnosing and/or being formally diagnosed.

 

Jeanette:  Thank-you for inviting me to be a mentor and role model. It is so important to let those on the Spectrum know that despite a rocky start to life, it is possible to change it around.

TEDx pic 3Tania Marshall©. 2013. AspienGirl and Aspienwoman Interview Mentor Series. All rights reserved. Duplication in whole or part is explicitly forbidden. Thank you.


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