asplanet.info
| INTERVIEWS: Jen Birch, Tony Attwood, Donna Williams, Stephen Shore... |
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| Written by AsPlanet.info - Various - UPDATED 2009 | ||||||||
| Oct 20, 2007 at 06:56 PM | ||||||||
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INTERVIEWS by ASPERGERS PARALLEL PLANET . .. 11 March 2009: My latest interview with Donna Williams: I interviewed her in regards to one of her books, which I feel is one of the most insightful interviews I have read for awhile: An interview that I felt so honored to do with the person who has so helped me on my our journey of self discovery, the one person I can so relate to and feel totally understands Interview link: http://blog.donnawilliams.net/2009/03/11/delving-into-the-everyday-heaven-of-donna-williams .Comment Via AsPlanet: "Thanks for sending that email link. I really enjoyed it. I thought you asked great questions. I think you had a great interview with Donna. It sounds like you have a close relationship with her. It made me think about my son too. We can't understand what he says on the answering machine when he leaves a message. He sounds fine on the phone. Jan Fischer [ ] . My reply: Hi Jan, thanks for your kind words and I am glad I could help you understand that little bit more, not easy as even for me taken half a life time to figure and then it feels like 2 long years of research to find true self. And no I do not have a close relationship with Donna but I have a connect that many find hard to understand, I guess as someone else called it a kind of sisterhood, its like with discovering ASD we find a whole community like an extended family that actually understands us.
. More comments as I feel comments, the interaction we all share when listen to each other so important and often gives us other insights and at times help the none autistic world connect with those of us on the autism spectrum, help see through our eyes, come that little bit closer to truly understanding. . .I also shared this interview with WrongPlanet members as at the start of my own journey they were my life line for a while, some of their comments: "Thank you good to read and your interviewing questions were very good..... i can relate to her compensatory fragmentations - the sense of developing chameleon like personas is something i did to adapt - in similar way to her. that is why some women with an ASD can be misdx'ed with MPD earlier in their lives - because of the social and verbal mimicry which requires an "other" to bounce off and set the tone and type of the relating. (acting really.) Lorna Wing mentions the spy and the confidence-man (trickster) as 2 other manifestations of ASD's, and Attwood cited these on the weekend at his talk. i'd read about these presentations before and it does tend to fit with me to some degree. . . "She really, really confuses me with her descriptions of things. It's like she's on the total other "spectrum" of emotion than I am, with me being on the logic portion. With me it's, 'what the hell is she talking about?'". "Thanks for posting that.Loved reading it. Her references to "gay man in female body" and all the gut and immune-system problems resonate with me, and the way she breaks up autism into component parts, says that the term autism has become so inclusive it is now virtually meaningless, ( except as social model ), and her journey through various stages/states ( which I have experienced too ). . The acting/mimicry I really get too. It takes a phenomenal amount of energy, and mental concentration, in my case it prevented me from doing very much else for about 10 years, until I broke down. " . Your welcome to scroll down and add your own comments at bottom of this screeen and / or come chat on AsPlanet forum:http://asplanet.info/forum/index.php. [My first full interview with Donna Williams was last year below (after Stephen Shore's interview)] _________________________________ . . .NEWS : GRASP Award (12 May 2009) the first ever DSM will be presented to one of the spectrum world's most valued members, Dr. Stephen Shore.  Dr. Stephen Shore . Diagnosed with "Atypical Development and strong autistic tendencies" and "too sick" for outpatient treatment Dr. Shore was recommended for institutionalization. Nonverbal until four, and with much support from his parents, teachers, wife, and others, Stephen research focuses on matching best practice to the needs of people with autism and he is now a professor at Adelphi University. . In addition to working with children and talking about life on the autism spectrum, Stephen presents and consults internationally on adult issues pertinent to education, relationships, employment, advocacy, and disclosure as discussed in his books Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, Ask and Tell: Self-advocacy and Disclosure for People on the Autism Spectrum, and the critically acclaimed Understanding Autism for Dummies. . Dr. Shore serves in the Interagency Autism Coordinating Committee, and for the Board of Directors for Autism Society of America Unlocking Autism, and other autism related organizations. . Film highlights artists with disabilities – 26 Feb.09 "ARTS," a film that highlights renowned artists and explores the value of the arts for children with disabilities, will have its world premiere at 7 p.m. Tues., March 3 at the Westlake Village Twin theater, 4711 Lakeview Canyon Road, Westlake Village. The Conejo Valley Friendship Circle is sponsoring the event. The film's creator and director, Thousand Oaks resident Keri Bowers, also produced "Normal People Scare Me" and "Sandwich Kid," films that provide an inside look at people with autism. A question-and-answer session with Bowers will follow the screening. . The documentary features seven creative individuals with disabilities: Dr. Temple Grandin, a designer of livestock handling facilities and professor of animal science at Colorado State University; Stephen Shore, musical savant and author of "Autism 101 for Dummies" and "Beyond The Wall: Personal Experiences with Autism and Asperger Syndrome"; actress and comedian Geri Jewell, who has cerebral palsy; architectural artist Stephen Wiltshire, who can draw an entire landscape by seeing it only once; and Mary Newport and Jerry Newport, co-authors of "Mozart and The Whale: An Asperger's Love Story." Newport is also a musical savant. . In the film, Bowers shows how the arts can provide tools for improving social skills, life skills, self-confidence, emotional well-being, communication and career paths for individuals with disabilities. Bower, whose son Taylor is autistic, began using colors as a way to help Taylor communicate his thoughts. Taylor is now a student at Moorpark College studying film. http://www.normalfilms.com/ . Stephen Shore interviewed September 2008 . Name: Dr Stephen Shore: Diagnosed with "Atypical Development with strong autistic tendencies" Dr. Shore was viewed as "too sick" to be treated on an outpatient basis and recommended for institutionalization. Nonverbal until four, and with much help from his parents, teachers, and others, Stephen completed his doctoral dissertation at Boston University focus on matching best practice to the needs of people on the autism spectrum.. Recently, Dr. Shore has accepted a professorship at Adelphi University courses in special education and autism. . 1. Have you been diagnosed with an autism spectrum disorder, if yes how and where. Yes in 1964 by a team of professional insisting I was too sick and needed to be institutionalized. . 2. How did you first get to know about Aspergers Syndrome From the Internet. Although I consider myself as having AS, autism was all that was around in those days. . 3. Do you feel that people with Aspergers Syndrome are unfairly treated Yes. Due to a lack of understanding of differences. . 4. Do you think that Aspergers syndrome should be classified as a mental disorder, learning disability or? Difference. Although it may be necessary to consider AS as a learning disorder at this time to get needed services. . 5. What services that you know of are there for people with Aspergers where you are There's bunches where I live. Boston is a great place to have Asperger Syndrome. The Asperger's Association of New England is on the forefront of developing programs for Aspies. State and Federal education laws provide schools services although more should be done. There are also private schools for children with AS and autism. . 6. What support and help are you receiving I make all of my own accommodations. For example, traveling long haul between countries as often as every few weeks can be over stimulating. As a result on such trips I insist on business class accommodations. THen Ia m in good order to do my presentations. My wife is also very helpful. After changing from a music doctorate to doctoral studies in special education I was able to self-accommodate for all of my needs. . . Aspies tend to be factual, to the point and truthful. There's no hidden curriculum to muddle through with inter-Aspie communication. . Every potential negative has a flipside positive. Sensory sensitivities can be flipped to having a greater appreciation of one's environment. Probably the most persistent negative effect is the misunderstanding of NTs about AS. . 9. Do you feel you can discuss being on the autism spectrum with others, friends, family… Yes. And I think there may be a word or two missing from the question. . I have many Aspie friends who are close to me. As you say, we are all like one big family. . _____________________________ . . . Donna Williams interviewed on May 2008 . . Name: Donna Williams I’m diagnosed with autism, I meet with plenty of Aspies and there’s lots of overlap but some skills they have I don’t have and some challenges and compensations I have they don’t have. I gained functional speech in late childhood. .
Hi Alyson, I’ve done a poem called:
. I know you are diagnosed with Autism, I may have aspergers but also see myself on the autism spectrum and can see many comparables with both. yes, there often is. I also have many associated condition, and like everyone in life we are all different… I had problems with speech growing up clutters, apart from having face blindness due to very bad sight was nearly blind for a while, but did not need to see people to recognize them. (sight great now have implants). cool, yes, there's parallels there. To me Autism is like a web which is in the center and around it just many associated conditions, unfortunately to me it’s still a bit like breaking open a piñata and depending on which direct you go, is what you get diagnosed with and what help you receive! true, I write about Autism as a fruit salad. I have just been diagnosed for just over one year now and before that it really felt like I was drifting in an endless ocean, now I do feel there are in fact a whole group of people who are just different, whatever their associated condition, autism, aspergers we are all on the spectrum and different from NTs. ah, now I don't use the term NT it took on too much reverse predjudice so as an egalitarian I can't refer to any group as typical, mundane etc.. . Your site was the one among few which really helped me to understand and I feel I could most relate to, as could see so many similarities within myself, so thank you for helping me to start to make sense of my life… Lovely, it's an honor it helps people. . PS. be great if could complete online interview (below)… . Online interview - Aspie (Alyson) interviews Autie (Donna) . Name: Donna Williams 1. Have you been diagnosed with an autism spectrum disorder, if yes how and where. Assessed as psychotic, aged 2, 1965, St Elmo's Private Hospital, Brunswick, Vic, Australia after 3 day inpatient observation. Didn't hear about it until 'Bryn' who I wrote about in Nobody Nowhere, got diagnosed with it. 3. Do you feel that people with Aspergers Syndrome are unfairly treated Well, they are greatly misunderstood in the school ground, in friendships, in relationships, in the work force, in the community, in the family, so yes, yes, yes. So faceblindness isn't understood, social-emotional agnosia isn't understood, being mono-track isn't understood, receptive language processing issues aren't understood, and these things and the stress they place on people with Asperger's means they're often misjudged on a whole variety of levels. Asperger's is not a mental disorder though 20-30% of those with it may also have mood, anxiety, compulsive disorders or attention deficits. It doesn't have to include LD, but if significant sensory perceptual or language processing issues are also present it often does. So no, the main aspect of Asperger's is often social emotional agnosia (with or without additional face blindness) in which people can't read facial expression, body language, intonation and this means they can't perceive emotional feedback unless it's overt and that's neither a mental disorder nor a learning disability. Many are also highly conscientious as personalities so when under stress behave as obsessive compulsive personalities, but if you understand the lack of feedback on the social emotional level via their senses then diverting into cerebral obsessional interests, or in the case of many with autism, diverting into sensory play, is simply a natural adaptation to sensory-perceptual challenges. So, I'd be more likely to call Asperger's a Sensory Perceptual Difference resulting in personality adaptations, to be precise ;-) We have the dinner clubs, activities groups, social groups. People are mobilising a lot. There's www.auties.org which helps people list work skills, start dinner clubs and activities clubs. There are disability employment services like Alpha Autism here in Vic. There's Autism Victoria. Each state has its own services. Adelaide has a great model. Heck. Well, I'm a strange situation of course. My somewhat Aspie husband helps me enormously. Our autie spectrum and autie-friendly friend networks are socially supportive. I have an autie-friendly lifestyle and work...I get to spend most of my time alone in solitary pursuits which is how I thrive. I do online autism consulting, go out and give talks to mostly autism friendly audiences, work professionally as an artist, sell a few albums of my music via www.cdbaby.com. I think sometimes we can get more from being helpful to others than being 'helped'. There are some things that are a big struggle on a daily basis. I'm very face blind, I deal with some degree of meaning deafness, meaning blindness, I lose the meaning from what I read, I can't cook on open flames without supervision.. I tumble a lot of what I see and hear, my ability to process messages about my own emotions or body messages is fairly delayed/problematic, I manage gut, immune, metabolic disorders and mood, anxiety and compulsive disorders I have medication for, but I think I get by pretty well. Fact is I mess up things every day, but I EXPECT that as my 'normality', hence I don't get very het up about it... no point. Fact is I'm so lucky to have the skills I DO have, the independence I do have, the equality I do have. So I'm not going to fixate on the deficits. I find Aspies can hold conscious thought pretty well which I struggle with so that's always useful where I can't do that much. I like that they don't fixate on or look for my feelings. I often have little/no idea what my feelings are so the last thing I need is someone taking that personally or looking for what they are. I like that many Aspies can get busy with their own thing because I'm very solitary myself. I think Aspies tend to be 'what you see is what you get' and that makes them pretty easy company. But some Aspies are too fixated on getting way too socially entangled for my tastes. I sometimes find I'm far more socially ambivalent than they are. I do find many are very kind, thoughtful and helpful. Some, but not most, are totally egocentric and fixated only on their own needs but I'd say that's not the majority I've met. When people lack the social emotional feedback due to sensory perceptual issues they can seem egocentric but most, given a chance to help, are as kind or kinder than most people. . Ranters, stalkers, obsessively resentful types. Certainly not the majority, but they exist. My father accepted my autism, no problem. He was open with me about it, proud of me. But there are several people on his side of the family with Coeliac, Bipolar, Dyslexia, ADHD, Asperger's and another with Autism, so maybe it was a relief for him to be able to openly talk about it with me before he died. yes, a number of cousins on my father's side. . Quote: We may seem in the gutter from up there where you are but maybe you don't know we still see the same stars." - Donna Williams Donna Williams author, artist, screenwriter, composer. Ever the arty Autie. WWW.donnawilliams.net. . . . . Tony Attwood interviewed on March 2008 .
. Tony Attwood is well known for sharing his knowledge of Aspergers Syndrome. He has an Honours degree in Psychology from the University of Hull, Masters degree in Clinical Psychology from the University of Surrey and a PhD from the University of London. He is currently adjunct Associate Professor at Griffith University in Queensland. . Tony has written several publications on Aspergers Sydrome. His book, titled Aspergers Syndrome, has now been translated into several languages. .1. When did you first become interested in ASD? I first became interested in ASD when I was nineteen years old and a volunteer at a local special school. I met two severely autistic children, who were five and seven years old, and became increasingly aware that the two children may have looked like any other child but had a very different way of thinking and conventional psychological theories could not explain their unusual behaviour. . I made a decision to try and find out more about autism to help such children and to one day become an expert on Autism Spectrum Disorders. . 2. Why did you decide to specialize in Aspergers? I decided to specialize in Autism Spectrum Disorders in 1971. As our knowledge of the autism spectrum improved we started to realize that the characteristics can occur in someone of normal and above average intellectual ability and who may have not had the characteristics of classic autism in their early childhood. I found the world of autism and, particularly, the world of Asperger's syndrome to be fascinating at both the emotional and intellectual level. .
3. Do you feel that people with Aspergers Syndrome are unfairly treated? I was reading an article in Cosmos magazine recently that implied that certain famous scientists may have had the characteristics of Asperger's syndrome. The journalist used the term “people who suffer from Asperger's syndrome”. My opinion is that people do not suffer directly from Asperger's syndrome, e.g. it does not cause pain in the joints, but they do suffer from the reaction of other people to being different. There is indeed suffering, but usually in response to not being understood and the attitude of other people. This can involve being bullied and teased at school and the lack of understanding can lead to significant problems for adults in terms of careers and relationships. . 4. Do you think that Aspergers syndrome should be classified as a mental disorder, learning disability or? I think that Asperger's syndrome is really a description of personality and abilities. It becomes a mental disorder when the characteristics have a significant impact on the person’s quality of life. I also think that those with Asperger's syndrome have a different way of learning which, for some, can be a learning disability, but for others may be a learning ability. For some it can be a mental disorder, but for others it can be just a description of personality and abilities. . I think that people with Asperger's syndrome need help in a number of areas. They may well need guidance in understanding the social world and aspects of friendship. I also consider that children and adults with Asperger's syndrome need guidance and support in emotion management, i.e. not only to manage their own emotions but also to understand the emotions of other people. For example, the ability to read a face, body language and tone of voice for the hidden meanings that can explain so much to other people. . Other services include guidance in terms of careers, relationships and, I hope in the long-term, help with regard to the sensory sensitivity. . Aspergers? Yes, I do. There needs to be support and advice at critical periods in the person’s development. There needs to be a greater public understanding of the nature of Asperger's syndrome; to view this as a difference rather than defect. . Syndrome? First of all, one of the most positive characteristics is the tenacity and determination of people with Asperger's syndrome to understand other people. Despite the adversity of being bullied and teased and misunderstood by peers and teachers, the person with Asperger's syndrome is heroic in terms of tolerating aversive environments. . Another positive characteristic is the development of special interests and talents. Certainly, I have enjoyed the exceptional abilities of people with Asperger's syndrome in both the arts and sciences. . I think that the negative effect is in terms of self-esteem, which is often the result of a negative attitude from other people. If you have Asperger's syndrome you are a minority in a world of social zealous and this, obviously, causes considerable stress. . to you? Yes, there are characteristics of Autism Spectrum Disorder in my family and I have a number of friends with Asperger's syndrome. . I think that the direction of research should be determined by people with Asperger's syndrome, e.g. many would like to know why they have an auditory sensitivity and are desperately in need of strategies to reduce such characteristics. Research should also be conducted into those with Asperger's syndrome who have successful outcomes and to learn how they made such achievements. . Another opinion is that research needs to be conducted into the talents and abilities of those with Asperger's syndrome to develop them to a level that can be of benefit not only to the individual but to society in general. . 11. What book did you enjoy writing the most and why? I had greatest enjoyment in writing Asperger’s Syndrome: A guide for parents and professionals, in that it was the first book to attempt an explanation of Asperger's syndrome and, from my perspective, the positive comments from those with Asperger's syndrome were more important than the positive comments of professionals and parents. If people with Asperger's syndrome enjoyed reading the book and found the suggestions beneficial then I knew that it was an extremely valuable book that was worth writing. . 12. Any new books on the way? I am currently writing a book with the working title of: So You Think You May Have Asperger's Syndrome which is for adults who think they may have, or people have suggested that they have, the characteristics of Asperger's syndrome. . Professor Tony Attwood - www.tonyattwood.com The Asperger’s Syndrome Clinic, Brisbane, Australia . . _______________________________________________________________________________
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Jen Birch online interview (February 2008): Author of “Congratulations! It’s Asperger Syndrome (Jessica Kingsley Publishers, London, 2003), some of these answers are also in my book. . 1. HAVE YOU EVER BEEN DIAGNOSED WITH AN AUTISM SPECTRUM DISORDER; IF YES, HOW AND WHERE. Yes, I was officially diagnosed when I was 43 years old; i.e. nine years ago now (I am writing this in February 2008). . I was studying for my Bachelor of Arts degree at the University of Auckland, and had only one semester left before completion. I attended a lecture one day at the university which was called “Asperger Syndrome.” I went in to the lecture completely unaware of what Asperger Syndrome was, so it was a huge revelation to hear my own lifelong characteristics and quirks described and given a name! This moment is when I first realised that I probably had A.S. (I had known all my life that I was “different” and that I had certain difficulties, but had never known why until hearing that lecture). . At the end of the lecture, I “grabbed” the lecturer (Dr. Angela Arnold, a N.Z. authority on ASD) before she left the room, and (to cut a long story short) we made an appointment for a formal assessment ….. whereupon I received the official diagnosis of A.S. . 2. HOW DID YOU FIRST GET TO KNOW ABOUT ASPERGER SYNDROME: During a university lecture, as answered above, in Question One. . 3. DO YOU FEEL THAT PEOPLE WITH ASPERGER SYNDROME ARE UNFAIRLY TREATED? I, myself, am usually treated well these days, I am happy to say. In a general reply to this question, however, I am sad to say that many Asperger individuals are treated unfairly at times, and particularly in certain situations. . I feel that the question needs to be split into two parts, i.e.: before and after getting the diagnosis of Asperger Syndrome, so I have now split it, as follows: . (a) Is / was the Asperger individual treated unfairly BEFORE diagnosis, i.e. before anyone knew that he/she had Asperger Syndrome? . This scenario (nobody knowing that the individual has A.S.) gives the other people SOME (small) excuse for negative behaviour, but not a complete excuse; and there is NO excuse if the people dishing out the unfair treatment are health professionals, e.g. doctors, nurses, specialists and so on, because those persons should be skilled enough to recognise that the person concerned has special needs of some sort, (even if they are not capable of diagnosing the ASD themselves). . (b) Is / was the Asperger individual treated unfairly AFTER diagnosis? -- There is even LESS excuse for unfair treatment AFTER diagnosis, because Asperger Syndrome is known to be a form of Autism Spectrum Disorder (ASD), which is (amongst other things) a recognised form of disability. Any unfair treatment AFTER diagnosis can therefore be considered a breach of Disabled Persons’ Equal Rights. . Some particular life settings can be potential problem areas regarding unfair treatment, e.g. work environments (for adults and teens who have ASD). However, employers, supervisors and colleagues need to upskill themselves regarding disabled persons’ rights and needs, and act accordingly. If they don’t know how to relate to their ASD employee, they should contact Autism NZ, or the person’s parents or support worker, or the Special Needs Employment Agency who put the person in the job (if applicable), or someone else who can advise them on the basics of ASD. . ALSO: I strongly advise all ASD job-seekers to use the services of an employment agency for people who have Special Needs in Employment. “Ordinary” employment agencies for “normal” people do not understand our special characteristics and needs, and, as a result, often place us in the wrong jobs. (E.g. In Auckland we have the excellent Poly-Emp Employment Service for people with Special Needs in Employment, which specialises in finding suitable work for its ASD clients, and then supporting us in the workplace). When using such special needs services, the problems of non-aware and unfair employers do not arise, as these issues are already dealt with by the Special Needs Employment Agency before you start the job. . 4. DO YOU THINK THAT ASPERGER SYNDROME SHOULD BE CLASSIFIED AS A MENTAL DISORDER, LEARNING DISABILITY OR……? Personally, I prefer the term “Developmental Disorder,” but as very few people outside of the Autism circle know what that means, we are then back to square one of having to call it something else! . I will now deal with the term “Learning Disability.” Yes, I consider (along with many experts) that A.S. is a form of Learning Disability – EVEN WHEN, as in my own case, we have above average academic ability. E.g. I have a B.A. degree, majoring in German Literature, but …… I still have difficulty regarding learning certain other types of things. I have had difficulty (and, in some cases, still have difficulty) in learning the following types of things: social understanding; activities involving co-ordination; activities requiring imitation; self-care tasks, e.g. getting dressed, keeping my hair tidy, tying shoe laces; practical tasks; independent life skills; problem-solving; learning new skills which are outside any of my prior experience, e.g. computer skills (!) . In order to get the required understanding from other people, e.g. in the workplace, I am only too pleased to admit to having a Learning Disability (and I also specify that this particular Learning Disability is called Asperger Syndrome), in order to have a stress-free working environment. Otherwise, I have trouble in learning new skills at work, and then go into panic mode due to not understanding the work requirements. Therefore, I much prefer that my employer and the necessary staff members already know that they need to be extra patient and understanding and give me extra time and assistance in learning new tasks, etc. That way, I avoid the stress overwhelm state that otherwise occurs. . Some other Asperger individuals DO have problems with learning academic skills, so then it is not such a controversial issue to make the statement that these particular individuals have a Learning Disability (which is part of having Asperger Syndrome), as it is already obvious that these individuals are having difficulty with their school work. Even with these individuals, having specific areas of Learning Disability is not the same thing as having an overall Intellectual Disability such as Down Syndrome; these two scenarios are two different types of disability. . Now for the second part of the question, “Should A.S. be classified as a Mental Disorder?” -Again, my reply is in two parts. . (a) I consider that A.S is not actually a Mental Disorder – it is actually a Developmental Disorder (a disorder of one’s development); BUT: . (b) A.S. still needs to be included in text books of Mental Disorders, and needs to be known about by psychologists and psychiatrists, because people with A.S. can, and often do, end up visiting mental health clinics at some stage, so the mental health professionals NEED to know about A.S., otherwise they are likely to mis-diagnose the client as having something else, e.g. schizophrenia. (Been there, done that). And the only way to get psychologists and psychiatrists to learn about A.S. is to include it in their training and in the Mental Disorder text books, e.g. the Diagnostic and Statistical Manual IV (DSM 4), in which it is now included. So that is why I feel the need for A.S. to be included in all resource material about Mental Disorders – so that mental health professionals thus get the opportunity to learn the difference between Mental Disorder and Developmental Disorder – which will benefit all A.S. persons in the long run. . 5. WHAT SERVICES DO YOU KNOW OF FOR PEOPLE WITH ASPERGER SYNDROME WHERE YOU ARE? I live in Auckland, so that is an advantage in terms of services (i.e. big cities usually have more services than do small towns). . (a) Autism NZ (Auckland Branch) is a large branch with staff members who are all experienced and/or qualified in the area of ASD. One staff member is the Adult Liaison Officer: her job is to assist adults who have ASD with whatever issues they have. (She works part-time, so she can not always accomplish the impossible, but the fact that there is an Adult Liaison Officer available is a huge step in the right direction). . (b) Autism NZ (Auckland Branch) also runs an Adult ASD Social Group which meets once a month. The Adult Liaison Officer and other facilitators (including myself) help to run it. It provides high-functioning ASD adults with opportunities to meet others, make friends, and join in discussions (if desired). . (c) The Poly-Emp Employment and Vocational Guidance Service for job-seekers with Special Needs in Employment (as mentioned in Question 3). So far, this organisation exists in Auckland only. Other similar Employment Agencies are Workforce and Workbridge. . (d) Richmond Fellowship can provide a community support worker to visit ASD adults at home and assist with issues. . (e) Renaissance Consulting can provide a support worker to assist ASD adults, e.g. learning independent living skills in one’s own home (as I am currently doing). . (f) Disability Support Services at universities and other tertiary education institutions help ASD students to succeed at tertiary level study. Students and would-be students who have ASD should register with the Disability Support Services office at their tertiary education institution (sooner rather than later). Disability Support Services can help by, e.g. supplying a Note-taker; supplying one’s own room and a Reader/Writer for exams and tests; liaising with one’s lecturers/tutors and informing them about one’s special needs, if required; providing a Disability Support Students’ Room where ASD students can take time out and relax. . 6. WHAT SUPPORT AND HELP ARE YOU RECEIVING? As mentioned above in some other answers: (a) Poly-Emp Employment Agency assistance (they found me a part-time job, and they still visit my workplace to ensure it is going well). . (b) I attend (and help to facilitate) the Autism NZ (Auckland Branch) Adult ASD Social Group get-togethers. . (c) I am receiving Supported Independent Living assistance (training and support) in independent life skills, provided by Renaissance Consulting. The support helper comes to my home for this, and it is free of charge. . (d) I know that I could, if I wish, ask the Autism NZ (Auckland Branch) Adult Liaison Officer for help with any issue. (I don’t currently have any issues underway with her). It is very reassuring to know that this service is available if needed. . (e) My Mum provides me with “moral support” and love, for which I am most grateful! As my Mum is also a very practical sort of person, I often ask her for advice, as she usually knows more than me in the field of practical knowledge. (My Mum and I do not live in the same house; we each live on our own – by choice). . 7. WHAT DO YOU FIND MOST POSITIVE ABOUT PEOPLE WITH ASPERGER SYNDROME? Thinking outside the square and its associated creativity; an eye for detail that many “ordinary” people don’t seem to have; preference for the “real” values instead of judging others on material items or fashion sense; a tendency towards “what you see is what you get,” e.g. much less game-playing and manipulation than in “normal” life. (I have included a list of Positives of ASD in my book, p.208). . 8. WHAT DO YOU SEE AS THE NEGATIVE EFFECTS OF ASPERGER SYNDROME? For me, they are: (a) high anxiety levels a lot of the time, and when something triggers it, e.g. an unexpected event or change; . (b) Difficulty with problem-solving (a common ASD feature), though I am now taking steps to assist myself with this; . (c) Health professionals not recognising AS and therefore taking the wrong action and/or giving us the wrong diagnosis (though this is not the fault of Asperger Syndrome itself!!) -- These wrong actions and wrong diagnoses can have negative effects on our lives (been there, done that). . (d) Other people not understanding why we are “different” and judging us negatively for this (although I realise that this is “their problem,” and not just the fault of Asperger Syndrome itself). . 9. DO YOU FEEL YOU CAN DISCUSS IT WITH FRIENDS AND FAMILY? I have some family members (e.g. cousins) with whom I have never discussed ASD, (and they have never asked about it). . I can and do talk about it to my mother, (mainly when she brings up the subject), and to any other person who brings up the subject. . Since my diagnosis, I now find that I mainly mix with people who DO know and accept my diagnosis, e.g. close family members; Autism NZ staff and members; Adult ASD Group members; my fellow Anglican church members; my part-time workplace at Special Education, Otahuhu, Auckland (part of the Ministry of Education). . I guess what is happening is that, since diagnosis, I no longer choose to be around people who do not accept me for what I am, which includes my Asperger Syndrome – therefore, my social circle has become (subconsciously) self-selecting on the basis of whether people are “ASD-friendly” or not. Therefore, I don’t have a lot of acquaintances (if any) who are not ASD-friendly. . 10. DO YOU HAVE ANYONE WITH AN AUTISM SPECTRUM DISORDER THAT IS CLOSE TO YOU? I would not say that I am “close” to many people ….. which is (perhaps) part of my ASD make-up. . I have friends within the Autism NZ (Auckland Branch) Adult ASD Social Group. . I have a few other friends who have various kinds of special needs – some of these special needs I do not know the precise labels of (if, indeed, anyone does), so their individuality may or may not include ASD, as well as a few other things. . And, also: some of the people with whom I am friends are NOT diagnosed with anything, yet seem to have more than their fair share of ASD features – possibly undiagnosed Asperger individuals, (of whom there are, of course, many). Oh dear, I do answer questions in a terribly round-about way sometimes. . 11. WHEN DID YOU DECIDE TO WRITE YOUR BOOK AND WHY? My best subjects at school were anything to do with reading and writing, so I already had this as a good starting point. . When, at 43, I suddenly got my revelation that I had Asperger Syndrome (followed up by official diagnosis), I was both glad and mad -- the kind of mad that means angry and frustrated that here in NZ we have to get to the age of 43 (and older) before, accidentally, finding out that our lifelong difficulties have been due to an undiagnosed developmental disorder. This is not good enough, I thought! . As I already had writing ability, I felt that my best way of combating this undesirable situation was to write about it…… hence my book, “Congratulations! It’s Asperger Syndrome,” (Jessica Kingsley Publishers, London, 2003) http://www.amazon.com/Congratulations-Its-Asperger-Syndrome-Birch/dp/1843101122 . When it was written, I made sure that quite a lot of NZ libraries got a copy. In this way, thousands of New Zealanders found out about Asperger Syndrome, which was what I wanted. Many of these New Zealanders then had the realisation that a family member, or themselves, had A.S. too; they then had the opportunity to get diagnosed, or, at least, to start living life with more understanding and more effectiveness than before. . (And, by the way, the book-writing project channelled my anger into a useful activity, and provided catharsis). . 12. TELL US ABOUT YOUR WEBSITE – it is www.aspergers.co.nz After writing my book, people started telling me that I now needed a website! I held off for several years and then realised that it was true. As I am definitely NOT computer-savvy, this meant a visit (and a fee) to a website company. . I wanted to give information about Autism Spectrum Disorders in ordinary language accessible to everyone, so that is what I have tried to do with my website. I also wanted to let people know that I have written a book on Asperger Syndrome, (in case they would like to read it), so my website helps to do that, too. _______________________________________ . . If you wish to be interviwed. Please contact me via contacts main menu... or comments below. . FOR MORE INTERVIEWS: 2008 - http://asplanet.info/index.php?option=com_content&task=view&id=89&Itemid=135 2007- http://asplanet.info/index.php?option=com_content&task=view&id=74&Itemid=120 .Autism Connect - Interviews listing: http://www.autismconnect.org/interviews.asp?list=1§ion=000100040001 . . . . . . .
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