Autism In The UK
Elyse: This is the MIDNIGHT IN CHICAGO podcast channel with Podcast Number 12, Autism in the UK for November 2008.
Thomas: Hello everybody out there in cyberspace. My name is Thomas D. Taylor. With me is Elyse Bruce, and I would like to welcome you to Podcast 12 from MIDNIGHT IN CHICAGO. This edition's subject is "Autism in the UK."
As you know, MIDNIGHT IN CHICAGO is committed to providing our listeners with easy-to-listen-to, factual autism spectrum podcasts.
All of the MIDNIGHT IN CHICAGO Audio podcasts can be found at www dot midnight in chicago dot com and you can listen to them by clicking on the "Podcast" tab on the left hand side of the webpage.
Today our topic is "Autism in the UK" in which we will be discussing autism, Asperger Syndrome, and High Functioning Autism and some of the issues surrounding them in the United Kingdom. We will speak with a woman from England who wishes her identity to be kept anonymous. We will be referring to her as Jane Doe throughout the course of this podcast.
Elyse: We ought to start out by saying that neither Thomas nor I is a medical professional and the opinions we express on these podcasts are our personal views. Additionally, listeners should always consult qualified medical professionals when seeking accurate medical advice that is appropriate to their specific situation.
Jane, thank you for agreeing to this podcast interview. This is another first for us to interview someone who isn’t from Canada as I am or from the United States as Thomas is. To help our listeners set a frame of reference regarding your experiences and feelings on the subject, it would be great if you could let us know where you live.
Jane: I am from the UK. I would prefer to keep my exact whereabouts unknown.
Elyse: In our podcasts to date, we have discussed Autism Spectrum Disorder issues from a North American perspective. We are interested in knowing how people in the UK feel about Autism. We’re also interested in learning about what life in the UK looks like to an Autistic.
Tom: Are you on the spectrum Jane? And do you know anyone else on the spectrum?
Jane: I am on the spectrum, and I know others who are also on the spectrum.
Tom: If you don't mind telling us, how did you feel BEFORE you knew you had an Autism Spectrum Disorder, and how did you feel after you received a diagnosis?
Jane: I was very confused before I received a diagnosis of AS and although I can sometimes still get confused now I certainly feel that having a diagnosis has helped explain a lot of things personally for me.
Tom: For our listeners who are unfamiliar with the term, AS refers to Asperger Syndrome. Jane, can you elaborate on what types of things confused you both before and after diagnosis?
Jane: Well from a very young age I observed other children playing and didn't quite understand what they were doing and when I tried to imitate them, join in, I somehow always managed to get it wrong. I just thought that they must have 'got it' quicker than me, what I didn't realize back then is that for many playing and social interaction comes naturally, whereas for me it was something I had to logically try and figure out. A lot of social interactions before my diagnosis did not make sense - I really did not know where I was going wrong. Since the diagnosis and more awareness some things make more sense, although social interaction is never going to be something that comes naturally to me. Subtleties and implied meanings are generally very confusing still.
Elyse: Sooner or later, there comes a time when an individual with AS decides to let others know they have been diagnosed with AS. In your opinion, is letting others know about a diagnosis good or bad, and why?
Jane: It depends on who you are telling I suppose. Some people are more accepting than others. I think one needs to think carefully about who they do tell as some people will treat you differently due to a diagnosis and not always positively. Some people will be willing to try and understand, but not all and sadly some will even discriminate against those on the spectrum.
Elyse: Discriminate in what ways?
Jane: I am aware that it could go against one in situations such as applying for jobs, as some employers do not have autism awareness and may mistakenly think that someone on the spectrum would not be suitable, also in applying for college and university courses the college or university may be put off thinking that someone on the spectrum would need more support than they could provide and even as a parent unfortunately even one's parenting abilities can end up being questioned
Tom: In the past, we across the pond heard news reports on a woman named Debbie Storey. On Thursday June 2, 2005 an ITV News exclusive entitled "The Mum Who Died of Fear reported that "A mum tragically died of cancer after refusing to see a doctor because she feared her sons would be taken from her, ITV News can reveal."
The article stated: "A psychologist who helped the Storeys fight to keep their sons has told ITV News she believes care proceedings were only considered because officials do not fully understand Asperger's syndrome."
On July 7, 2007, an article entitled "Autistic mum's baby taken into care" reported that two weeks before what should have been the happiest day of [a new mother-to-be’s life]” her family attended a case conference where Monmouthshire County Council placed the unborn baby on an `at risk' register. The argument was that because the mother-to-be was diagnosed with Asperger Syndrome, in their opinion, she was allegedly at higher risk of developing post-partum depression, and therefore she would more be likely to neglect her baby. Have you heard about either of these cases Jane?
Jane: Yes.
Elyse: As someone from the UK who has AS, do you have any opinions to offer about this Jane?
Jane: There is still a serious lack of autism awareness, which often leads to misunderstandings that can, obviously as the two cases you have just mentioned, lead to dire consequences.
Elyse: If you could say something to Monmouthshire County Council right now, what would it be?
Jane: What they have done is appalling, not only are they discriminating, but by their actions they have shown a total lack of care or understanding.
Tom: What has getting a diagnosis done for you personally, good or bad?
Jane: The awareness has been helpful; however as aforementioned I am also aware that having a diagnosis can lead to being discriminated against.
Elyse: Have people changed the way they relate to you now that you have been diagnosed as having AS?
Jane: On the whole no, but I have become wary of who I tell I think for some who know me it helps to explain, helps them understand why I am the way I am.
Elyse: Did you ever decide to seek out other Aspies?
Jane: Yes
Elyse: And when you found them, how did you feel? What did communicating with other Aspies do for you?
Jane: I didn't feel like a nutcase anymore, finally I'd found others that I could relate to and things began to make more sense.
Elyse: How was relating to Aspies different that relating to people who were not on the spectrum?
Jane: I find it easier to chat to others on the spectrum, often it is like we are speaking the same language, whereas when I chat to those not on the spectrum there tends to be a lot of misunderstanding.
Tom: Many Aspies in my forums feel the same way. They feel that most Aspies they communicate with are operating n the same wavelength and have similar brain patterns. Can you tell us anything positive or negative that you feel about AS now that you have been diagnosed with it?
Jane: There are many positives and I feel most of the negatives come from negative attitudes and lack of support and awareness. Personally for me one of the definite positives is what some consider obsessions and that I consider interests and being able to hyper focus and enjoy researching my interests, whereas many non Aspies often find such boring. I also have not lost my sense of wonder that many non Aspies seem to lose when they reach adulthood. Although I do not consider Aspergers negative, I can get very frustrated when trying to communicate -- understand non Aspies, I don't always get subtle tone of voice and often non Aspies communicate with a lot of subtle implied meaning that I also fail to spot.
Tom: What are some of the positive and negative experiences that you have heard other Aspies tell you about how people relate to them after a diagnosis?
Jane: Unfortunately I haven't heard many positives, but I have heard of cases where those with diagnosis have been discriminated against, for instance not been allowed to take certain courses or continue furthering their education in certain areas. I also think that some consider that those with a diagnosis or going for a diagnosis will try and use it as some sort of excuse. Some prefer to believe that those on the spectrum are lazy and trying to get out of things, rather than the fact that certain things for people with autism are genuinely difficult.
Elyse: Here in Canada , it is very difficult to find services for people on the autism spectrum Some provinces have more services than others. Ontario seems to have the best in Canada , but in some ways they are extremely lacking. How are services in the UK ?
Jane: It is very similar in the UK ; some areas have autism services, whilst others have none and the services that are available are often oversubscribed to and have long waiting lists. Also often such services are expensive and if one cannot afford such they have to apply for funding which is not always granted.
Elyse: Jane, on July 8, 2007 there was an article published in the Sunday Herald in the UK with regards to medical studies. I think it bears discussing here. It said that Dr Andrew Wakefield faced allegations of serious professional misconduct in London and that three doctors who carried out the research which sparked controversy over the safety of the triple MMR (measles, mumps, rubella) vaccine were facing a catalogue of allegations of serious professional misconduct.
The inquiry centered on a study published in The Lancet Medical Journal in 1998, in which Dr. Wakefield claimed to have found a connection between the MMR jab with autism and bowel disease. Dr Wakefield subsequently recommended the use of single vaccines. The allegations were that research conducted between 1996 through 1998 was done so without proper ethical approval. The doctors involved were accused of allowing investigations such as colonoscopies and lumbar punctures to be carried out on children, against the patients' interests.
Aside from the fact that Dr. Scherer at Sick Kids Hospital in Toronto has shown the autism is genetic and NOT caused by vaccines, what sounds bad to our ears is how the people in the study were mistreated. Jane, what is your opinion about this occurrence?
Jane: It doesn't overly surprise me; I have noted that not all research is accurate. It does make me angry that children's rights have surely being violated though.
Tom: How do you, as an individual diagnosed with Autism, feel about this?
Jane: What is very worrying for me is that due to incorrect research children are actually being harmed and in some cases die when people treat them with therapies that are invasive and not even recommended or researched properly. Also due to Dr Wakefield's research many children have missed out on immunizations that can lead to serious illnesses and even death.
Elyse: If you were an Autistic involved in this study, how would you have felt?
Jane: To be honest it would be unlikely I would have been involved in such research, so I can't really say, but I suspect I'd likely be angry and upset.
Tom: What would you tell people about this situation if you could?
Jane: The majority of scientific evidence points to autism being genetic. There are many theories out there to what the possible causes of autism are and maybe other factors are involved. However instead of focusing on the reasons and possible cures I believe it would be more helpful and better for all to focus instead on helping those with autism, getting appropriate services, awareness and support. I also feel the need to restate that a lot of therapies that are aimed at helping autistics are in fact dangerous and not even approved.
Elyse: One thing I have noticed is that school systems fall very short in educating people with AS. We have a generous amount of funding to help educate special needs kids, but actually getting the funding is difficult, and once gotten, what is purchased with that funding is not always that great either. A high dollar amount may be appropriated for a one-on-one youth worker to be in present during class with an AS student, for example, but the training in autism this worker has undergone might be only a few hours or one or two classes. How well does the educational system over there work for people on the autistic spectrum?
Jane: There may be the odd schools here and there that are meeting the needs of those on the spectrum - however on the whole I think many are being let down by the education system and for some it has failed completely.
Tom: Where would you say is the reason for this – lack of training, lack of understanding, lack of funding or something else entirely?
Jane: Well there are training courses out there; it is just that many schools do not deem it necessary to send teachers on the courses. Attending courses is not mandatory. If your house needed re-wiring, you wouldn't be allowed to pull just anyone off the street to do it, the electrician has to be trained and qualified, otherwise it is deemed dangerous. Yet we are expected to let totally untrained and unaware people work with our children.
Elyse: What sorts of improvements in the educational system would you like to see?
Jane: Training is essential, so making training mandatory would certainly help.
Tom: Are teachers and administrators in the schools to any degree educated about how to educate and deal with AS kids?
Jane: I think this largely depends on the individual, there are some teachers and administrators that take an active interest in autism, however there is certainly a lack of autism awareness in the majority of schools.
Tom: One of things I've felt about teachers and administrators who work with special needs kids is that despite having a degree of training in the area of special needs, personal prejudices against special needs kids are seldom overcome. These personal prejudices impair school-student relations. Do you know of instances of this in the UK ?
Jane: Yes, I have come across teachers that have believed that those on the spectrum have no empathy, no creativity and even some believing that autism is a form of psychosis and these are just a few of the misconceptions I have come across.
Elyse: If you could instruct people on the subject of spectrumites and empathy and creativity, what would you say?
Jane: Many on the spectrum do have empathy, just because it is not always shown in a way that is easily recognizable, doesn't mean it isn't there. As for some believing that people on the spectrum are not creative, that has come from a misunderstanding of the diagnostic criteria, where it says 'lack of imagination.’ Lack of imagination as pertaining to the diagnostic criteria does not mean lack of creativity and also many on the spectrum actually have very good imaginations I have noted.
Elyse: I believe Jane is referring to the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revised, or DSM IV TR. One of the criteria for Asperger's Disorder is "Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities," which includes an "encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus."
Some have added to this with criteria outside the DSM IV TR by asserting that kids with AS are not imaginative.
Hyperfocus and perseveration do not preclude imagination. Many of the greatest creative minds of our generation, including Stephen Spielberg, Bram Cohen the creator of Bit-Torrent technology, Pulitzer Prize winner Vernon L. Smith, and Satoshi Tajiri, the creator of Pokemon are diagnosed with Asperger Syndrome specifically, and imagination and creativity were surely the major cornerstones for their success.
Tom: How about vocational training? What services are offered for people with AS? Do you know anything about that?
Jane: Very little is available, but is again likely to differ from region to region, but on a whole there is little support for those on the spectrum.
Tom: What kind of vocational training would be advantageous for people on the spectrum, and what would you tell potential employers of spectrumites if you could?
Jane: Personally I think all areas of vocational training should be open to those on the spectrum, as people on the spectrum are individuals, so one person may have strengths in one area, their area of interest and for another person their strengths may lie in another area. I would tell potential employers that generally people on the spectrum are hard workers who take their jobs very seriously and many will actually think outside of the box and can come up with ingenious ways to make a workplace more efficient and productive.
Elyse: We have a National Healthcare System which is good in some ways and bad in others. What sort of health system do you have in the UK ?
Jane: We also have a National Healthcare System, although it is very stretched and cannot always meet needs or provide funding for autism services.
Elyse: What does your health care system say it will do for people on the spectrum and does it live up to its mandate?
Jane: It differs from region to region and some areas are better than others.
Elyse: What do you feel is the biggest problem facing people on the spectrum today?
Jane: Lack of autism awareness and appropriate support.
Elyse: And how would you remedy this if it were up to you?
Jane: By raising autism awareness and lobbying for appropriate support. By being involved with such things as this podcast and other projects that raise awareness.
Elyse: On July 8, 2007, an article written by Daniel Martin reported that Autism is twice as common as doctors believe it to be. In the article, it reported that a study found that in the UK as many as one in 58 may have some form of Autism. This is well above the widely-accepted existing estimate of one in 166.
Using the article’s claim of 1 in 58, this means that approximately 210,000 children under the age of 16 in the UK have autism or a related disorder. The leader of the Cambridge University study, autism expert Professor Simon Baron-Cohen, said the higher figure was not linked to use of the controversial MMR jab.
Knowing all that, what do you foresee happening in the future in the UK with regard to how people see and treat autistics?
Jane: It would be nice to think that due to the fact autism is more prevalent than previously thought that services and support would rise to meet demand; however I personally feel that most will still have to fight for appropriate services and support, but I believe that figures such as those you just mentioned can help in the fight to push for services.
Tom: Do you see things improving for autistics or getting worse?
Jane: I think this as ever will differ from individual to individual, from region to region - however I think quite a bit can be achieved if people get together and fight to raise awareness, for appropriate support and services. I do feel passionate about this and it is re-assuring that there are others out there that do too. Changes are unlikely to happen over night and also authorities are unlikely to provide what is needed unless they are made aware that there is a need and that people are demanding that they meet it.
Elyse: Do you believe acceptance of autistics will rise now that people know more among them are autistic?
Jane: Again this will differ from individual to individual, however sometimes the media's portrayal of autism doesn't always help. For example if a person commits a crime and is suspected, or has a diagnosis of autism the news story often focuses on this, but yet crimes are committed everyday by people without autism and the paper does not say 'Today a person who was not autistic committed a crime..' Sometimes the media's portrayal of autism can be very stereotypical, leading to more misunderstanding, for example many people have heard of 'Rain Man' and many I have spoke to instantly assume that all autistics are like 'Rain Man' and that all people with autism must have savant skills, when such is actually fairly rare.
Tom: What could autistics be doing to educate people about autism?
Jane: Get involved with and support groups and projects that are raising autism awareness and lobbying for appropriate support.
Elyse: Is there anything else you'd like to say before we draw this podcast to a close?
Jane: It would be nice if people would stop fighting over possible causes of autism and trying to find a cure and instead were to be more accepting, understanding and supportive of those on the spectrum.
Tom: Well then, we kindly thank you for joining us on this Midnight In Chicago podcast Jane.
Elyse: Thank you very much for your thoughts, Jane.
Jane: Bye!
Source #1: http://www.itv.com/news/index_63106.html
Source #2: http://icwales.icnetwork.co.uk/0100news/0200wales/tm_headline=autistic-mum--8217-s-baby-taken-into-care%26method=full%26objectid=19418874%26siteid=50082-name_page.html .
Source #3: http://www.awares.org/pkgs/news/news.asp?showItemID=802&board=&bbcode=&profileCode=§ion=
Source #4: http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article_id=466966&in_page_id=1774
© Thomas D. Taylor, Elyse Bruce and MIDNIGHT IN CHICAGO, 2008
All rights reserved. The MIDNIGHT IN CHICAGO Audio Podcasts on Autism and transcripts cannot be reproduced without first obtaining written permission from the copyright owner. Contact bruce @ midnightinchicago.com to request permission.