There was a protest march in London on Saturday. I am not talking about the tens of thousands who were protesting over the economic recession in advance of Wednesday’s G20 Summit in London. There was another march that day protesting about autism. I did not attend, but from the photos posted online it looks like a few hundred parents, children and their supporters turned up to march from the Embankment to a rally in Trafalgar Square.
The march was called by Open Your Eyes to Autism, “a parent’s initiative” that has strong links with The Autism File. This is a magazine founded by Polly and Jonathon Tommey to promote biological interventions for autism, especially dietary ones. They were the first parents in the UK to try secretin on their child. I once shared a platform with Jonathon Tommey at a conference for health care professionals. Lisa Blakemore-Brown was also there and spoke about the use of Munchausen’s by Proxy to discredit parents who insisted on biomedical treatments for their autistic children. I felt at the time that both had valid insights, but these were insufficient to support the weight of their arguments.
Still, it made for an interesting conference in which medical professionals, attending as part of their continuing professional development, were exposed to the alternative views promoted by Tommey and Blakemore-Brown alongside more orthodox speakers. My contribution was an early attempt to promote the idea that health care professionals can make a positive contribution to the support of autistic people and their families if they start out by accepting the autistic person instead of trying to cure them. You can read it here.
So I was interested to see that despite its biomedical, anti-vaccine sympathies the march on Saturday also welcomed representatives of the London Autistic Rights Movement, including Hub blogger Casdok who attended with her adult son and a placard that read “Acceptance Not Cure.”
This may be because the march seemed to offer something for everybody. Its flyer called for
Improving services for autistic children and adults.
Recognition of the endemic nature of autism worldwide.
Better educational services.
Valid Research to establish cause.
More support for autistic adults.
More help with the transition from child to adult:
Support for Dietary interventions on the NHS.
Recognition of the role of environmental triggers in ASDs.
And much more…
In this the march resembled its larger counterpart on the day. Both were coalitions who could agree upon some issues and disagree about others. The key questions yet to be answered are, “Should we try to build a coalition in which the points of agreement outweigh the points of disagreement? If the divide is too great can we at least maintain a constructive dialogue while pursuing our distinct agendas?” I am open to suggestions on both questions.
March 30th, 2009
Posted by
Mike |
autism acceptance, autism advocacy, campaigns, politics |
9 comments
I have commented in the past on inflated figures for the costs of autism across the lifespan. These figures are sometimes used to justify calls for mandatory financial coverage of treatments and therapies that are supposed to normalize behaviour. The alternative is an alleged economic meltdown as the putative autism epidemic places an intolerable burden on the economy.
Recent research suggests that adult outcomes do not necessarily match this doom-laden scenario. A study from the University of Utah has looked at what happened to young people from an earlier study now they are all adults. They followed up 41 of the original 241 autistic Utahns. All had a measured IQ in childhood that was greater than 70. According to the press release
For the follow-up study, the researchers assessed the participants’ overall social outcome by their ability to maintain paid employment, the existence of meaningful social relationships, and their degree of independence in daily life. From these criteria, an individual’s overall social outcome was assigned to one of five categories: very good, good, fair, poor, and very poor:
- Very good meant the person held paid employment without extra support to perform job duties, had important social relationships, and a high independence in daily life.
- Good indicated the individual had a generally high level of independence at work and in daily life, requiring some extra support, and also had a friendship or some acquaintances.
- Fair reflected the need for regular support at work or home, but the person did not have to live at a special residential facility. The participants in this category had acquaintances through special activities but no particular friends.
- Poor showed the need for a high level of support, such as a residential living facility and planned daily activities for people developmental disabilities. Those in this category had no friends outside their residential living arrangements.
- Very poor meant the individual required a high level of care in a hospital setting with no autonomy and had no friendships.
By these measures, the researchers found that 24 percent of the participants had a very good social outcome; 24 percent had a good outcome; 34 percent had a fair outcome; and 17 percent were rated in the poor social outcome category. No one’s social outcome fell into the very poor category.
The original study, published in 1989, used DSM III diagnostic criteria. DSM III used very narrow criteria based on Kanner’s descriptions of autism and excluded many of those who would qualify for a diagnosis of autistic disorder using modern DSM IV criteria along with all those who currently meet DSM IV criteria for PDD-NOS and Aspergers disorder. So, even though the follow up looked at outcomes amongst the most able subjects of the original study (those with IQ >70), it is reasonable to surmise that all would be regarded by today’s standards as severely autistic.
Yet nearly half of them enjoy good or very good outcomes, requiring very little support. If the researchers had followed up the entire cohort, including the two thirds with an IQ < 70, no doubt there would be many more with a poor or very poor social outcome. However most people identified with autism today are at least as able as the subjects of the present study. So how did they achieve such positive outcomes in Utah?
My thanks to Dora Raymaker at autism.change.org for linking to a possible explanation. I had forgotten that Utah is home to the Church of Latter Day Saints (LDS). LDS culture is supposed to be inclusive of people with disabilities and fosters close knit communities with supports that bridge the generation gap. This is not to say that there is no downside to being autistic in Utah. According to the Salt Lake Tribune
Still, about half of the adults in the study are on Medicaid, live with their parents and need a lot of help from family or social service agencies with jobs, relationships and personal care. A sizeable number have had trouble with the law or have other medical disorders, from anxiety and depression to trouble sleeping.
And in another story the same reporter writes of a family where an adult son is still dependent on elderly parents.
At ages 68 and 62, Carl and Valerie Jensen have asked another son to care for their youngest when they die.
The Jensen family are the son’s main source of social contact, along with a group of friends he made in special education classes in high school. The social support he once had through his LDS ward is largely gone now that his peers have moved on and married.
Despite these caveats it does seem that if society can be organized in an autism friendly way then autistic people can live fulfilling lives without bringing the economy crashing down. We still need to make proper provision for vulnerable people. In doing so we should be guided by a desire to improve their quality of life rather than seeking answers through prevention and cure.
March 24th, 2009
Posted by
Mike |
adults, autism acceptance, research |
5 comments
Action For Children is a charity with a long history of advocating for the rights of the child. Formerly known as NCH and before that the National Children’s Home, It began as a children’s home set up by a methodist minister, Thomas Stephenson, in 1869. Its continuing connection with the Methodist Church is embodied in its Articles of Association.
Action for Children is inspired by and works closely with the Methodist Church to improve the quality of life of the most vulnerable children and young people and continues the work of the former unincorporated charity, NCH (previously National Children’s Home). Action for Children’s stated purpose is “to help the children who need it the most” and is rooted firmly in the tradition of John Wesley who said that we should go not only to those who need us but to those who need us most.
Its purpose is
To help the most vulnerable children and young people break through injustice, deprivation and inequality, so they can achieve their full potential.
A recent press release on knife crime sums up its approach to disaffected youth.
We need to remember that they are more often victims rather than perpetrators of this type of crime. We must stop demonising and start involving them in this debate, especially the most vulnerable youngsters who are often the ones most affected but whose voices often go unheard.
So why does its latest TV ad about Aspergers Syndrome get it so wrong?This is Dan’s Story. The sound quality is not great, so apologies for any errors in transcription.
I used to lash out if something pushed my buttons or I wasn’t able to do something. Things that wound me up were if they’d insulted me I would physically hurt that young person. My parents sought out help with my autism because it was becoming a pain in the bum. I went to an Action for Children school. I started feeling a bit more friendlier with other people. Thanks to the carers I was able to correct a lot of errors in my behaviour and become a better person. Well I feel a lot more confident thanks to them. I feel at peace with myself.
In the short video that accompanies this commentary autistic Dan is a monster rampaging through city streets that are covered in grafitti, a wild beast. But as he becomes entwined with the logo of Action for Children the real Dan, a vulnerable child, emerges into a green field with trees and is able to trample the beast into the ground.
There is also a cartoon sequence on the website which invites us to “meet Dan.” This repeats the monster imagery with the little boy alone and scared inside who gradually emerges thanks to the kindness of those around him.
All this is in stark contrast to the message coming from the NAS Think Differently and I Exist campaigns. Their message is that autism need not be so bad if we can raise awareness and understanding and provide the right supports. Autistic people deserve to live in a world where people do not push their buttons or insult them. They should not be afraid, as Dan was at the onset of adolescence, that he would not be able to survive without his parents.
I have very real objections to Action for Children’s treatment of autism in this ad campaign.
In all their other work they quite rightly see troubled children as victims of poverty, abuse, neglect and discrimination. They provide services for young adults because one of their slogans is “For as long as it takes.” They do not sign a person off at 18 or 21 if the damage has not been repaired.
But with autistic children they seem to think that it is the autism that is solely responsible for the child’s behaviour and ignore the injustice and abuse that compound the natural difficulties that an autistic child might face even in the best of worlds. All the problems are located within the child and they are all ascribed to the autism monster.
The angry child and the frightened child are the same person. The anger and the fear are united in the experience of the autistic child. The anger is born of fear and the cure for anger is to take away the fear. But in Dan’s story we are shown a frightened boy inside an autism monster and the cure is to take away the monster of autism and trample it into the ground.
Disturbing as this campaign is, I am even more disturbed by thought that, if this is how Action for Children think about autism, what is the impact of this way of thinking on the way they respond to autistic children in their care?
January 23rd, 2009
Posted by
Mike |
autism acceptance, campaigns, ethics |
42 comments
2009 promises to be an important year for us all. The state of the world economy is going to exert pressure on publicly funded services as well as those supported by charities and other not for profit organizations. If we are lucky we will not see a major reduction in autism specific services. But we cannot reasonably expect to see an expansion. Most autistic people and their families will continue to rely on generic services and these too will be subject to downward pressure on their budgets.
One low cost option that can make an enormous difference is the move to make generic services autism friendly. If service providers are made aware of the kind of accommodations that can make life easier for autistic people and their families and their staff have some basic autism awareness training it can make a world of difference.
With emergency services like fire, police and ambulance this has long been the case. Dennis Debbaudt has pioneered the provision of training for first responders. The National Autistic Society is supporting similar schemes in the UK. The appointment of a person with specific responsibility for autism within the Department of Health and the publication of new social care guidelines are welcome initiatives.
Public perceptions of autism are also important. Doom laden campaigns with the message that autism is a mysterious kidnapper of children are not only misleading but also create barriers. If we cannot understand something, or are told that it is beyond our understanding we are more likely to turn away. Scare stories about the cost to society of the “autism epidemic” are also likely to backfire. People are already scared of losing their jobs, their homes, their life savings. Trying to scare them into doing something about autism is a dangerous strategy at the best of times and these are most definitely not the best of times.
Although it is not without its critics, the ongoing NAS campaign to Think Differently About Autism has tried to avoid these pitfalls by being honest about the problems that can come with an autistic spectrum disorder and being positive about what people can do to help. Now Change.org an American social enterprise site promises to do something similar with its new autism blog.
What I really like about this blog is the decision to appoint two editors. Kristina Chew is the mother of a severely autistic child. Dora Raymaker is an autistic adult. She is Co-director of the Academic Autistic Spectrum Partnership in Research and Education and a member of the Autistic Self Advocacy Network’s Board of Directors.
In one of her entries Kristina charts her journey through autism from being a dedicated seeker of cures and recovery to her present situation of accepting her son’s autism. Here is a sample.
Once upon a time, I tried to recover my son from autism, through educational therapies and biomedical treatments. As he’s gotten older, I’ve come to think that focusing on recovery distracted me from truly helping Charlie and truly understanding Charlie. It’s Charlie’s education that is our main priority as we prepare him for his future, and especially an education that takes into account Charlie’s learning style, his tremendous struggles in many areas, and his strengths.
In one of her entries about a talented artist with autism Dora writes
How can we change to world so that instead of just aspiring to get Bula “a job working at a local gallery, cleaning and taking care of the art supplies,” we instead aspire to give Bula a chance to succeed as a working artist doing what he loves, and being treated with the respect that anyone with his talents deserves?
This is definitely one for the blog roll. Read and enjoy.
January 4th, 2009
Posted by
Mike |
autism acceptance, autism advocacy |
4 comments
This blog is an infomercial for my favourite autism charity - The National Autistic Society.
The present financial crisis is already affecting the voluntary sector. Charities are suffering as the recession affects people’s ability to give. In the UK at least 20 charities have lost an estimated £125 million in reserves that were placed on deposit in high interest accounts with the Icelandic banks that crashed last week.
There are some really tragic stories like a children’s hospice that lost £5 million. Some charities have lost all their reserves and may go out of business. Local authorities may have fared even worse - they had over £1 billion invested in Iceland. This money is lost. And, unless the government steps in the only way for local authorities to recoup their losses will be to raise taxes and cut services. This, of course, will impact upon the most vulnerable people in society who depend upon council services. Charities who would normally step in to fill the gap are already operating on reduced budgets.
I think the government should intervene. This week they announced a £500 billion rescue package for the banks. Another billion to help the real victims of the recession does not seem out of place. But a change in the tax laws could make things even worse for charities. The irony is that it is a measure that was introduced earlier this year to close a loophole that was being exploited by the banks and finance houses, of all people! They were employing tens of thousands of staff on rolling, temporary contracts in order to evade payment of hundreds of millions of pounds in national insurance contributions to the Treasury. The government response was to introduce a charge on the banks of 17.5% on the salaries of temporary staff. But many charities operate with a tiny full time staff and employ temporary staff to deliver projects. They too will be liable to what is effectively a payroll tax of 17.5%. Coming on top of everything else this will be enough to force some charities to close down.
The National Autistic Society is OK for now. We have a prudent level of reserves that are securely invested and most of our staff are on contract. But our future income faces downward pressures. Local authorities who buy into NAS services will probably be operating on reduced budgets and people who donate money to support things like our helpline and training for parents of newly diagnosed children will also be feeling the pinch.
Whatever happens to the economy, we are not expecting to see a recession in autism. Millions will continue to visit the NAS website. Tens of thousands will continue to ring the help line. Thousands more will use the information and advocacy services, attend the Help! meetings etc. And hundreds of adults and children will benefit from the direct provision of a range of services by the NAS such as schools, residential homes, day centres and supported employment schemes.
Simply the best
I believe that the NAS is the best national autism organization in the world today. We provide a wealth of services. We are actively encouraging autistic people to take a leading role with seven diagnosed autistic people elected to the Council and one elected to the Board of Trustees. Parents like myself remain in the majority but we have just elected our first sibling councillor as well.
Honesty
The current campaign, that began with Make Schools Make Sense and continues with I Exist, combines honesty about the problems that autism can bring with a positive attitude towards autistic people and their ability to make a difference in their own lives if we can give them a fair chance.
The latest stage of the campaign is darker and focuses on what happens all too often when autistic people and their families are not given a fair chance. Bullying, isolation and despair are the triad of consequences if people are not given a fair chance. So building the paid up membership and stepping up our fundraising is very important right now. We want to make a difference and we need your help.
Anyone can join the NAS. We have national and international membership; individual and organizational membership; family membership and concessions for autistic people, students and the unemployed.
Anyone can give money to the NAS. If you are a UK taxpayer remember to tick the the box for giftaid.
Not everybody has money. But we all have time and skills. Consider donating your time or your expertise to the NAS. We need volunteers for things like our help line and our parent to parent scheme (training provided). We need skills that can make a difference at local level - expertise in fundraising, accountancy, advocacy, publicity, etc. One branch might need a web site designer. Another wants a befriender. Contact the national office if you want to help.
Thank You!
This has been an infomercial on behalf of, but not authorized by, the National Autistic Society.
October 12th, 2008
Posted by
Mike |
National Autistic Society, Uncategorized, autism acceptance, autism parents, parents |
5 comments
I am still curious as to whom Mady Hornig and Ian Lipkin consulted in the “autism parent/advocacy community” before carrying out their recent study that found no association between the MMR vaccine and Autism and no association between the MMR vaccine and GI disorders. So I wrote to the press officer.
Your press release entitled “Study Firmly Shows No Connection Between Measles, Mumps, Rubella (MMR) Vaccine And Autism” quotes Professor Lipkin as saying,
“The study design process was a critical piece for us, as there is still so much public concern over the safety of the MMR vaccine. For this reason, we involved the autism parent/advocacy community as we designed the study to ensure that all issues were being addressed. We are hopeful that this process of community engagement will build important partnerships among members of the autism community, physicians, public health agencies, and clinical researchers; serve as a paradigm for the conduct of future studies to understand the causes of this disorder; and facilitate the rapid communication of clinically relevant scientific findings to the broader community.”
I note that many of the parent advocacy groups like NAA and Safe Minds are openly critical of the paper and wonder which advocacy groups did you consult? I am a member of the Autism Hub, a community of bloggers that broadly welcomes the results of this study. We include parent advocates, professionals and autistic people. We support evidence based medicine and uphold the values of scientific enquiry. We oppose the pseudoscience and quackery that infests many of the parent advocacy groups. There is no compelling evidence for an autism epidemic, vaccine induced or otherwise. There is no evidence for the efficacy of the biomedical “cures” being touted to parents groups.
We are trying to get the research community to understand that these people - TACA, NAA, Generation Rescue, Safe Minds etc. do not represent the views of most parents. Celebrity endorsement from people like Jenny McCarthy has helped to give them a disproportionate presence in the media that belies their actual importance. To this end some of our members recently took part in a panel discussion at the University of San Diego and I am presenting a poster on our activities at the upcoming International Conference in London organized by the National Autistic Society. We would welcome a dialogue with the research community that helps to place the needs expressed by autistic people and their supporters at the heart of the research agenda.
The Autism Hub is not really an organization. We are more like the expression of an idea. I suspect that our greatest strength, our diversity, is also potentially our greatest stumbling block when it comes to building an organization. But there is a need for organizations that embody the principles of the Autism Hub, if only to give the lie to the claims of the anti-vaccine parents that they represent the autism community. They are invited to sit on the Interagency Autism Coordinating Committee. They are consulted about the the design of academic studies. They have ready access to the media. This is not because they are popular. They do not enjoy mass support. After all no more than 2000 people attended their Green Our Vaccines Rally in Washington. The latest figures confirm that less than one per cent of US children are unvaccinated. But they are organized.
I know that there is a tradition of self organization within autism. The Autistic Self Advocacy Network and Autism Network International are prime examples. The only drawback with such organizations is that it is hard for them to organize children. And while I may be convinced that the best advocates for autistic children are autistic adults our present culture does privilege parents in this respect.
The anti-vaccine parents are vocal and committed. They have no qualms about claiming to represent the autism community. But autism hub parents are constrained from challenging them because we would feel uneasy about claiming to represent “our children” if it meant disenfranchising all the autistic adults who would much rather speak for themselves, thank you very much.
The answer is to build an organization of parents and autistics. It may not be easy. Parents and adults do have differing agendas. Potential sources of disagreement include questions like:
- Is autism a disability or a difference? Can it be both?
- Is our agenda the same for all autistics regardless of their potential for independent living?
- Autistic adults need accommodations more than interventions. But is the same true for children?
I think we need an Alliance for Autism that reflects our diversity. It would work like this.
- We should not try to resolve all our differences in advance and create a perfect organization with no internal conflicts.
- Otherwise we would be forever involved in meetings about meetings and looking deep into theoretical discussions. Meanwhile nothing happens.
- We should not ignore our differences and pretend we are all united by tacitly sweeping all our differences under the carpet.
- This would just lead to us adopting meaningless forms of words that tried to paper over the cracks in our campaign. I am sure that McCain and Obama will provide us with plenty of examples of this in the months ahead!
- We should be able to acknowledge our differences and agree to disagree on any number of issues providing we can come together on those issues that do unite us.
- As an old time socialist my favourite analogy is the picket line. There can be all sorts of debates and disagreements expressed until the strike breakers make an appearance. Then you suspend your debate and link arms to see off the threat.
I would like to see an organization develop along these lines to counter the influence of “the usual suspects” in Safe Minds, NAA et al. and get our voices heard in the media and at the conference table. How about it?
POSTSCRIPT
Prior to posting this I consulted with friends in the autism community. They raised some important concerns which I hope I have accurately summarized thus and I append my responses thus. (NB I a not reprinting email exchanges on my blog. I am reporting on what I took away from these discussions and how they have influenced my thinking.)
Do we really need another parent founded, parent led organization. Shouldn’t we be allying with and empowering existing organizations like the Autistic Self Advocacy Network which are founded and led by autistic persons?
The reason why I am proposing the alliance, as opposed to developing an existing organization like ASAN goes back to my experience as an anti-racist activist in the 1970s when we were concerned about the growth of the far right in the UK.There were anti-racist and anti fascist groups out there but none of us had mass appeal and just bringing us together was difficult because of all the ideological baggage different groups brought to the table.
The solution was the Anti Nazi League. We came together around a single aim - to expose the far right as the Hitler loving nazis they really were. We did not ditch our ideological differences. We did agree that they were not relevant at that moment in time to the specific task of the ANL. The result was a broadbased movement that went far beyond the collective reach and appeal of the original activists who set it up.
Translating that to today and building an alliance for autism I would want it to be able to attract and speak for parents who want evidence based therapies for their children and may even believe they want a cure but are horrified at the anti-science, anti-vaccine stance of McJenny & Coy. and the untested “cures” they inflict upon their children.
Such an alliance need not be parent led but I think it needs to be parent focused. Existing advocacy organizations like ASAN may well prove to be the organizational force behind the alliance. But the aim would be to bring parents on board in a form that governments can recognize and incorporate in structures like IACC at the expense of the existing “autism parent/advocacy community” who are hogging the limelight right now.
An anti anti-vacine organization may be necessary but it is not the same as an Alliance for Autism. A real alliance for autism is defined by what it supports, not by what it opposes.
I agree. To continue with my analogy from my days in the ANL, we were fortunate that a parallel organization - Rock Against Racism - arose at around the same time. They emphasized the black origins of most popular music and organized concerts and music festivals under the positive banner of “Love Music Hate Racism.” Both organizations enjoyed a symbiotic relationship for a crucial time when they supported each other and both were strengthened.
Translating this experience to the autism community I suggest that we build the bits we need and then see how they fit together. Some people will be building the ”anti” bits. Others will be building the positive bits. and we will find an accommodation with each other.
The vaccine issue is a blip of no lasting importance. The real battle will centre upon the myth of “normalization” to make autistic people “indistinguishable from their peers” and the potential for eugenic “solutions” to autism implicit in the current search for genetic markers for autism.
Again, I agree. But right now this”blip” looms large on the horizon and children are suffering as a direct consequence. We have to take it out. In doing so our natural allies are in the scientific community. I agree that long term, the really important argument will be between us and the scientific community about concepts of disease, disorder and the social model of disability. That is one reason why I have sought and gained appointment to the lay consultative panel of the Human Genetics Commission which exercises ethical oversight of the general trends in genetic research in the UK.
We should be positive about autism. Parents are excited by the ideas of neurodiversity. But such an alliance has to be led by autistics.
Yes, absolutely! But we have to acknowledge that most parents do not begin by feeling positive about autism and excited by neurodiversity. Most parents begin by being wide open to anyone who promises a cure.
And those parents who do learn to accept autism and make the best of it do not see themselves primarily as supporters of self advocacy for autistic individuals. They see themselves as central to advocating for their children and look, in the first instance, for allies amongst similar parents. They take a long time to realise that their children are going to become adults with autism. I use that form of words deliberately instead of autistic adults because I see this phenomenon with parents of all sorts of children, autistic and otherwise at my school. The key point is that, more than most parents, the parents of any child with a disability are inclined to see their child as first and foremost a child, and resist the idea that they will be an adult one day. Once they accept the inevitablity of their offspring leaving the nest they become more open to ideas about self advocacy and human rights issues for disabled adults.
In other words parents do not automatically see themselves as being on the same side as autistic adults. They are totally committed on the side of their children. If we suggest that they sign up as parent auxiliaries in support of a generic autistic rights movement this will strike them as patronizing. I think that mutuality rather than auxiliarity (is that a word?) best captures my understanding of the way forward.
The bottom line is that parents have legally enforcable rights and responsibilities in relation to their children. The fact that some parents abuse their rights and ignore their responsibilities should not detract from my basic premise that parents are de facto the primary advocates for their children. Hence we need an alliance in which neither parents nor autistic adults are subordinate or auxiliary to each other.
This is where I am at the moment. It could be that I am wrong. But I think a public debate about where we go from here is the best way forward. I know that clown blogs and hate blogs will mock us.But what else is new? We are a vast community and they are a pimple on the arsehole of humanity. It is time for us to set our own agenda and use our best endeavours to make it so.
September 10th, 2008
Posted by
Mike |
Autism rights, Neurodiversity, autism acceptance, autism advocacy, autism parents, disability rights, parents, science |
29 comments
The Brunei Bulletin carries this report on autism I loved the theme, “Don’t DIS the Ability.”
Autism Conference advocates ASD as strength.
The 6th Brunei National Conference on Autism was held yesterday morning at the Civil Service Institute with the theme “Don’t DIS the Ability” which advocates the Autism Spectrum Disorder (ASD) as an ability, an advantage and as strength.
“Time is our enemy,” stated Malai Haji Abdullah bin Malai Haji Othman, President of SMARTER Brunei, at the three-day conference.
“Our programmes would be obsolete in six months if we don’t bring in outside people for new ideas,” he added as he reiterated the necessity of the annual conferences in improving their services and methodologies.
The Society for the Management of Autism-Related Issues - In Training, Education and Resources, more commonly known as SMARTER Brunei, was established in September 2001and has since been fervently advocating their cause.
One of the main objectives of the conference is to review the SMARTER STEP programme and discern its relevance in the developmental process of individuals with Autism (IWA).
The STEP programme is a holistic approach to seven essential, independent living skills designed to support, assist, facilitate and enhance the development of IWA through real activities in a real environment.
The “cradle to grave” seamless journey to independence provides an intensive programme for early childhood, teenagers and adults.
In yesterday’s session, invited speaker Yvette Cook presented a paper on the most common issues of food refusal and allergies, as well as sleep issues faced by IWA and their families.
Meanwhile, Debbie Smith spoke to parents, teachers and other participants on developing communication through alternative methods.
Other invited speakers during the duration of the conference are Associate Professor Dr Verity Bottroff, Vice President of Autism South Australia; Joanna Zeitz, specialising in cognitive behaviours therapy and Manager of the Adult Services for Autism in South Australia; and Peter Hill, Pharmacy Dispensary Manager at Gosford Hospital in NSW Australia with particular interest in the area of Autism.
The conference will end tomorrow with the hopes of achieving their vision of an Autism Friendly Society that will enable IWA to adapt and live independently through the home, school and community, as well as the public and private sector.
I wish the reporter had elaborated more on the abilities, advantages and strengths of autism. Most of the report was about the intensive interventions they used to enable autistic individuals to live independently and, presumably to make use of their autistic abilities, advantages and strengths. But again the report is short on detail. I did notice a significant input from speakers from Australia and no mention of epidemics, vaccines or devastating disorders. If anyone has more information on this conference or the organization behind it would love to hear from you.
August 23rd, 2008
Posted by
Mike |
autism acceptance, autism advocacy |
3 comments
Many thanks to Steve and Bev for an excellent performance on behalf of the Autism Hub when they appeared on These Days, a talk show with an audience of tens of thousands in the San Diego area. You can download the interview here. They were being interviewed because both are speaking at the University of San Diego’s Summer Autism Institute entitled Autism; Work With Me, Not On Me.
They are not alone: Fellow Autism Hub bloggers, Estee Klar-Wolfond, Do’C and Autism Diva who now blogs more often over on LeftBrain/RightBrain are all joining them to give a joint presentation
“Blogging and Autism: The role of the internet in today’s autism community.”
And Estee has her own slot as well:
The Mismeasure of Autism: The basis of current autism “advocacy”
I wish I could have been there. But i am looking forward to reading all about it on their blogs when they return.
Steve asked us to showcase our favourite blogs in case newcomers turn up to see what all the fuss is about. I am reposting an article wrote on Neurodiversity because it sums up a lot of my feelings about autism.
What is Neurodiversity?
What is Neurodiversity? By Mike Stanton
When I attended the International Autism Conference in London last year I heard Professor David Amaral tell the story of a young man with Asperger Syndrome who was visiting the MIND Institute at UC Davis. He was asked what he would do if they could develop a pill for autism. He thought for a while before replying that he would take half the pill.
I think this illustrates a real difference within the autism community. There are many who pathologize autism as a disorder that afflicts an otherwise healthy individual. If you hold this idea you naturally look to understand the causes of autism in order to find that “autism pill.”
The idea of Neurodiversity was developed by autistic people in opposition to the pathologizing model. According to them autistic people are not disordered. They have a different sort of order. Their brains are differently wired. They think differently. They do not want to be cured. They want to be understood.
This is not to deny that autistic people often face real difficulties. That is why the young man at the MIND Institute told David Amaral that he would take half the pill, but not the whole pill.
What does Neurodiversity mean for parents?
The cure mentality places great pressure on parents to rush into interventions. Then there is the guilt. Was there something I did or didn’t do that caused the autism in my child? Can I put it right.? How can I not put it right? Instead of raising your child you can spend all your time trying to fix him. One mother’s story illustrates this.
Olivia was four when Liz finally faced up to the diagnosis, wracked with guilt that, having given birth to her at the age of 42, she was somehow responsible for her child’s problems, either directly or as a result of a pre-natal diagnostic test (amniocentesis) that went wrong.
Her way of dealing with this lonely burden was to take action. “I wanted to rip the autism out of Olivia with my bare hands,” she says. In the years that followed, she whirled her daughter from one therapist to another, trying everything from cranial osteopathy and “brushing” her nerve endings, to Portage - a method of teaching everything in tiny steps.
[…]
“Every practitioner is convinced that his or her treatment is the one and you feel compelled to try everything to find the one that will open up your child. I have seen children who have made remarkable improvements, but I would never say they have been cured or recovered.”
[…]
Having reached a state of mind where, even if she could, she would not change Olivia, she tries to concentrate on the good qualities that come with autism - honesty, uncompetitiveness, absence of spite.
Embracing Neurodiversity allows you to stop looking for a cure because there isn’t one. I agree with the Autism Society of America that,
Most of the enlightened world knows that autism is at its root, genetic, and therefore by definition it is not something that can be considered “curable” or a “disease.”
Giving up on a cure is not the same as giving up on your child. In fact it can help you to take a more balanced approach. It is easier to reflect on your child’s strengths as well as their difficulties and take up Lorna Wing’s advice that,
an autistic child can only be helped if a serious attempt is made to see the world from his point of view.
Sometimes our biggest problem lies with other people. One mother gave me permission to quote something she wrote in an email about autism and acceptance.
I think that it’s a bit insulting sometimes for people, especially family and friends, to try to give me information about how to make my son be a ‘bit less autistic’. It makes me think they want a short-cut to make him more acceptable. I’d prefer it if they tried to connect with him and enjoy him as he is. Then they’d really be able to help him to progress.
This is the essence of Neurodiversity. First accept the difference. Then find ways to work together. And it is not all about problems either. We all had a favourite subject at school that we were good at and something else we really struggled with. Imagine being told that you had to drop your best subject and have double lessons in your worst subject.
That is not so far from the experience of lots of autistic children whose interests and talents are sidelined while we concentrate on their difficulties. This can send all the wrong messages to our kids. They learn about their limitations but rarely get the chance to achieve. So they put up barriers to protect what is left of their self esteem. You try and offer constructive criticism. They take it as a mortal insult.
If we accept somebody and work with their strengths we can help them to find ways of dealing with their problems that work for them. I spent a lot of time trying to solve my son’s problems and making choices for him. The turning point came when Dave, a clinical psychologist asked him to think about what he wanted. Prior to this my son had always been encouraged to meet other people’s demands and expectations. Dave was the first person to give my son explicit permission to put his desires before our expectations.
When does Neurodiversity give way to disability?
It is a common mistake to believe that neurodiversity is only for people who are “high functioning” or are “mildly autistic” or any other synonym for “not my child.” The argument goes that neurodiversity is all right for you. You can talk. You can write. You are intelligent. My kid is non-verbal, self-injures and needs constant care.
There is a whole set of problems that comes with being high functioning. People expect you to be normal or at least to act normal. So you expend a lot of mental energy pretending to be normal which leaves you wide open to stress related problems like depression, obsessive compulsive disorder and social anxiety disorder. You may be paralyzed by panic attacks or have uncontrollable bouts of anger. This can get you in trouble with the law or trapped in the psychiatric system. Being high functioning is not a soft option.
Does the demand for tolerance and understanding mean ignoring children in distress, doing nothing about autism, denying the need for scientific research? Of course not. We support the need for decent peer reviewed research into the problems associated with autism. It is by no means clear what constitutes the core features that are fundamental to autism, and what are secondary factors. We just do not see any justification for seeing all a child’s problems as being down to its autism and imagining that there is a magic bullet to solve them all.
Who will speak for my child?
This is a real concern, especially for parents of children who are highly dependent on others. But we are all mortal and when we die who will speak for our children then? Neurodiversity is a way of thinking about human difference that has the potential to change the world for autistic people in ways that are comparable to the impact of the liberation movements for women, blacks and gays. When society speaks for my child, then I can die happy.
The National Autistic Society in the UK recently changed its constitution. We are no longer a parent led organization. Previously there had to be a majority of parents elected to our National Council. Now there has to be a majority of family members - parents, siblings and people with autism. Many parents of severely autistic children were worried that this dilution of control would weaken their voice as the only effective advocates for their children. Some were worried that high functioning autistics would take over the NAS and their children would be forgotten.
I pointed out at the AGM that in my experience autistic people who were willing and able to campaign and hold office were concerned for the rights of all autistic people. They take Neurodiversity seriously and value everyone on the autistic spectrum. The parents of children with Asperger Syndrome were far more likely to push the NAS down the path of providing mainstream support for their children at the expense of those who needed more expensive care and protection.
Neurodiversity, like freedom, is indivisible. And its benefits are being seen within the NAS as the professionals in our care homes and schools strive to create mechanisms whereby all autistic people within our structures are able to self-advocate, make choices and exercise personal autonomy.
What does Neurodiversity mean for professionals?
By listening to autistic adults I have changed my practise in relation to the autistic children with severe learning difficulties in the special school where I teach. I no longer expect eye contact. Instead of demanding, “Look at me when I am talking to you!” I ask, “Are you listening?” When I speak to a child I give them extra time to process my words and formulate a response. If someone is acting strangely, instead of stepping in to prevent the behaviour I ask myself, “Why is he doing that?”
OK I am only human. sometimes I have bad days. I make mistakes. I mess up. So do the kids in my class. They make allowances for me. I make allowances for them. Some people do not get it. They think I am “letting them get away with it.” Yes, like they are being autistic on purpose.
The most important thing a professional can do is to help a person understand and accept that they are autistic and then decide what they are going to do about it. A lot of autistic people spend a lot of time trying to change themselves to fit in with the world as it is. It is important for autistic people to learn how to get by in this world. But they will not do that if we try to manage the way they think. I often say that we should not teach autistic people to manage their behaviour. we should teach them to manage ours. And between us we may make the world a bit more manageable for all of us.
What does Neurodiversity mean for autistic people?
I am a parent and a professional. I am not autistic and therefore would not presume to speak for autistic people. There are many who can speak for themselves. You can find a really good sample at the Autism Hub, a place where autistic people, parents and professionals meet with no distinction and anyone is welcome providing you share our respect for the condition of being autistic. We seek no fundamental alteration to this state of being but we do seek to intervene sometimes should the situation require it. And when we do intervene we should remember the words of a very wise person with autism, my son.
My autism is not a problem. It creates problems. But it is not going to go away. I want help with my problems not with who I am. I want you to offer support but do not try and change me into someone else.
Links
One mother’s story
http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2006/05/08/hastor08.xml&sSheet=/health/2006/05/08/ixhmain.html
Autism Society of America
http://www.autism-society.org/site/News2?page=NewsArticle&id=8273&news_iv_ctrl=0
Autism Hub
http://www.autism-hub.co.uk/
June 25th, 2008
Posted by
Mike |
Autism rights, Neurodiversity, autism acceptance |
32 comments
A QUESTION
Over on Orac’s blog, Respectful Insolence, The Integral asked an interesting question.
Orac, and anyone else, I need help…..I want to respond to someone who believes that autism is a “disease”………I don’t believe that at all. Are there medical blogs/entries/articles that offer “proof” (for lack of a better term) that autism is not a true disease, like HIV or syphillis or other things like that?
thanks………I wouldn’t know where to start looking.
The Integral
SOME ANSWERS
Well, the president elect of the American Acadamy of Pediatrics, Doctor David Tayloe has stated on the Larry King Show that he regards autism as a disease.
KING: He might do a few things. What puzzles you the most, Dr. Tayloe, about autism?
TAYLOE: Autism is a disease that just doesn’t have an easily identify cause or therapy.
KING: You call it disease?
TAYLOE: Yes.
Doctor Grinker in Unstrange Minds wrote:
“In the view of anthropologist Arthur Kleinman, a disease occurs when something is wrong with our bodily organs and systems, whereas an illness is the experience of unwanted or negative changes in our bodies or our ability to function in society. Autism is thus both a disease and an illness, and it cannot be otherwise.” [Unstrange Minds page 230]
Furthermore autism is included in the World Health Organization’s International Classification of Diseases. You will find it in Chapter V, Mental and Behavioural Disorders. Dig deeper and you find autism in block F80-F89 Disorders of Psychological Development.
In the United States (and increasingly throughout the rest of the world) The Diagnostic and Statistical Manual of the American Psychiatric Association (DSM-IV-TR) offers an alternative system of classification that, like the ICD 10, also refers to autism as a disorder.
This all illustrates the folly of using quote mining to try and prove a point. Dr Tayloe is a pediatrician. He treats sick children. I imagine that he uses words like illness and disease as synonyms and has no reason to consider the technical differences between these two terms that Dr Grinker, the anthropologist describes. And it is very unlikely that either of them will have enjoyed the dubious pleasure of sitting on commitees that explore the nosological niceties involved in classifying and defining conditions and deciding whether they constitute a disease or a disorder or even a syndrome. (Asperger’s Disorder in DSM-IV-TR is Asperger’s Syndrome in ICD-10 for example.)
Joseph responded to The Integral and linked to his own blog post on the Emporor’s New Pathology. I particularly enjoyed his conclusion.
Calling something a pathology shouldn’t be a big deal. Does it matter to Halle Berry, for example, whether her diabetes is called a disease or not?
The short answer is that it is problematic when the so-called disease refers to your way of being. If it were no big deal, then shouldn’t the gay community be OK with homosexuality being called a pathology? The reasons why it is a big deal should be self-evident: (1) It redirects efforts and resources into finding an often mythical “cure”, which many of the individuals with the condition do not want; (2) It discourages accomodation; (3) It provides a justification for discrimination; and (4) If the condition is an important part of someone’s way of being, calling the condition a disease is effectively the same as calling the individual a disease. This is the case whether we’re talking about a disability or a difference.
I would quibble with the last point. The individual may feel that. But this does not mean it is the intention of those who call autism a disease. I do agree with Joseph that:
It’s really not something there is a right answer for based on what is known. It’s probably more of a political question at the moment.
DISCUSSION
My old philosophy tutor warned us against ”weasel words” that often have to bear the weight of the user’s political and ideological baggage. That is why we have to be careful when ascribing significance to ”expert” opinions and definitions. When challenged over whether autism is a disease, a disorder, a syndrome or even a difference our natural inclination is to follow The Integral in seeking out an authoritative source to justify the political burden that we attach to the concept.
But that just mirrors our opponent, who has their own agenda and their own equally authoritative sources. We have all been there, swapping PubMed abstracts in a vain attempt to trump the other person’s argument. It is better to challenge the other person to justify their argument.
Some examples:
-
“What do you mean by disease?”
-
“What do you mean when you characterize autism as a disease?”
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“By your definition is Down’s Syndrome a disease?”
In my experience the important thing in discussions like these is not to persuade the other person that they are wrong. Instead, if you believe that reason supports your case, the important thing is to persuade your opponent to think. It is also incumbent on you to think as well. We all come to these questions with a predisposition to favour one side or another. This may be a reasoned decision based on previous knowledge and understanding or it may be more visceral.
Some more examples:
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If it is wrong to eat mercury in a tuna sandwich how can it be right to inject it into babies?
-
If autism is a disease of course we ought to try and cure it.
-
Investigating the causes of autism is the same as wanting to get rid of all autistics.
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Saying I have a disease is like saying I am a disease.
Sometimes gut feelings turn out to be correct. After all instinct preceded intellect in the evolution of life. But feelings should not be privileged over other forms of knowledge. Your strength of feeling is no more a measure of truth than your opponent’s equal and opposite feeling on the same subject. We often turn to science to settle these questions. But, as Joseph observed, how we characterize autism is as much a political question or [my preference] a philosophical question.
The problem with philosophy is that it is not science. The scientist uses tested procedures, equipment, measuring devices to produce data. And there are further statistical tools to analyze the data and point to conclusions. It is not perfect. Bias can interfere with the choice of subject, study design and the interpretation of results. Even so the bench work of the humblest scientist should yield results that are more objective than the discourse of the most eminent philosopher. And most of us engaging in these discussions are trained in neither science nor philosophy!
A CONCLUSION
I think that whenever we use words like disease, cure, neurodiversity, acceptance around autism we should not be asking are they true. Instead we should ask if they are helpful. Do they take the discussion forward or do they erect barriers? It all depends on the context. In the case of anthropologists like Dr Grinker who are examining autism in the context of the cultural response to difference, it makes sense to think of autism as a disease entity and compare it to other disease entities. Are attitudes to autism within a given society concordant with attitudes to other diseases or to disease in general? Diseases like childhood cancers can attract sympathy and the local community will rally round an affected family. The same people may recoil from a child with AIDS. Where does autism fit in this scheme of things?
I do not think it is useful for medical doctors like Dr Tayloe to think of autism as a disease. All their training leads them to seek cures for diseases, to normalize the abnormal. But if you think of autism as a different way of being the solution changes. Instead of trying to normalize the autistic person you are more concerned to optimize their development. And if that means accepting the parameters of their autism rather than seeking to eradicate them so be it. When I addressed a conference of health service professionals in London a few years ago I gave them this message.
It is often the case that, rather than trying to normalize their behaviour, we would do better to teach autistic people that their normality is different to ours. Then, instead of telling them to change all the time because we are right and they are wrong, we could teach them strategies to understand us and make allowances for our behaviour.
A Positive Role for Health Professionals
I think this view of autism could be quite attractive to psychologists and psychiatrists working in the health service. Instead of seeking to pathologize the behaviour of autistic people they would be freed to celebrate the positive aspects of autism and share this with parents who naturally want to love and value their child despite their difficulties. There is a lot of discussion about the need to mourn the loss of your ‘normal’ child and your hopes and expectations for him while you adjust to having an ‘abnormal child’ after diagnosis. It may be that what we really mourn is the lost opportunity for celebration. Autism appears to have taken this away from us and from our child. As Matthew once said to me,
“I’m sorry, Dad. I wish I could have been the boy you never had.”
Take the autistic child. Restore his self esteem and teach him to take pride in himself. Educate his parents in the best ways to raise him and teach them coping strategies for the challenges he will present. Counsel the brothers and sisters and teach them how to draw strength rather than weakness from their autistic sibling. You may not have a cure. But there are ample opportunities for you to heal.
April 27th, 2008
Posted by
Mike |
Autism, Neurodiversity, autism acceptance, politics, science |
32 comments
The NYU ad campaign on autism and other disorders has quite rightly angered a lot of bloggers. I am struck by the reasoned responses of the writers, many of whom are autistic themselves. The campaign is supposed,
“to create awareness and spark dialogue about childhood psychiatric disorders”
It certainly provoked a discussion. The many people who have written to NYU to raise questions about this campaign have all been referred to Harold S. Koplewicz, M.D., Director, NYU Child Study Center. Dr Koplewicz is responding to all letters with a form reply that repeats, word for word the content of the Ransom Notes Campaign web page. When autistic children repeat a script over again and ignore what the other person is saying we call it echolalia. When directors of child study centers do it, apparently they are encouraging dialogue. Well, here are some contributions to the dialogue. Some of them are autistic but none are as echolalic as Dr Koplewicz.
Autism Vox
How we talk about autism—how we talk about autistic persons—directly impacts on how the public, how people, think about autism, and how they perceive and act towards autistic persons. Implying that an autistic child is like a child who has been kidnapped—-is a child who has been kidnapped—recalls older stereotypes of autistic children as “caught” and “imprisoned” in an “autistic shell,” and their real (normal) self “trapped” inside. It is not too hard to find references to autistic children that use such language, as in this commencement speech presented by Autism Speaks co-founder Suzanne Wright on May 15, 2007:
There is a beautiful little boy in my family who has been kidnapped by autism.
Abnormaldiversity
I am diagnosed with PDD NOS, which is a condition related to Asperger Syndrome and Autism (in my case I’m more AS-like), and with PTSD, which in my case results in depression and mild OCD-like behavior.
I would like to say clearly that there is an important difference between the two types of conditions I am diagnosed with. PTSD is something I have, which causes me serious psychological pain and does feel a bit like ‘being kidnapped’. In contrast, PDD NOS is something I am, which affects my thinking in such profound ways that I cannot imagine it any different, has many positive effects as well as negative ones, and only harms me in making me fit poorly within my environment - change the environment and I’m fine.
Blog from the Windowsill
A campaign to raise parental awareness about childhood psychiatric disorders is using ransom notes.Because parents of children diagnosed with these issues aren’t scared enough already, or doing their best already. My child is not a disorder and he is not a prisoner.
How about raising awareness by helping people with undiagnosed children recognize the signs? Not to mention the doctors who fail to notice or to believe parents reporting the early warning signs? (Yes, pediatrician who told me autism was fashionable, I do mean you.)
Whose Planet is it Anyway
Many of us do indeed feel as if we’re being held for ransom, but you’ve got the identity of the perpetrators all wrong. To find a clue, you might want to take a good look in a mirror. We—that is, America’s autistic citizens and our families—have had our lives hijacked in recent years by a greedy profiteering agenda that has deliberately and viciously stigmatized autistic people as broken, less than human, our souls stolen from us, and similar bigoted garbage, all for the purpose of making money by selling therapies. As a result, we now face prejudice and discrimination every day, in all aspects of our lives.
My thoughts on
Throughout my life, I have grown up with the stigma of being autistic and have found that most of my problems with autism are not so much with the disorder itself, but the negative press that seems to be coming in all directions from the media and those who claim to be working for our benefit. I work a full time job as an IT consultant at an oil company and already have a hard enough time living with being compared to Rain Man, tragedies, cancer and people asking questions about whether I am likely to snap and kill everyone, without this angle of terrorism being hoisted upon my shoulders and the shoulders of all other who are like me.
stop. think. autism.
How about a poster about how people who fidget or don’t make eye contact or may have difficulty in social settings be accepted? How about identifying these people as valuable members of society? How about respect? What about teaching kids it’s not right to bully someone, simply because they are different. This center had an opportunity, obviously they had the funds, to make a campaign that would de-stigmatize Autism and the psychiatric disorders they are talking about. But, they neither achieved the ability to create public awareness nor truly help the people they are supposedly advocating for.
Crimson Thoughts
At a minimum, it is insensitive to say such things, anyway. How pleased am I to learn that I have a ransom note written in my name? I can’t say I’m thrilled, especially since, if I’m captivity, I totally missed the point. I could say I have been locked away from social interaction in degree, but no more than a regular person is locked into certain types of thoughts. And if you’re locked away from something, it seems that you can be given something as well; my social distance has given me a perspective that, frankly, I like.
Mother of Shrek
And what does the future hold?
Some see autism as a weed that has to be plucked from the worlds garden. Autism is not like cancer, it is not an illness that needs to be cured. Autism is an integral part of our society. We shouldnt have to be subjected to things like this.
So there you have it. I urge you to follow the links and read these blog posts in their entirety. And if you are minded to write to NYU here is the reply you can expect to receive.
The NYU Child Study Center’s “Ransom Notes” public service campaign is designed as a provocative wake up to create awareness and spark dialogue about childhood psychiatric disorders, one of America’s last remaining silent public health epidemics. Twelve million American children and adolescents face daily battles with psychiatric disorders. Untreated, these children are at risk for academic failure, school dropout, substance abuse, suicide, unemployment, and imprisonment. Children who do receive appropriate treatment, however, can learn to function and thrive.“Ransom Notes” may be shocking to some, but so are the statistics: suicide is the third leading cause of death among young people ages 15 to 24, and serious emotional problems affect one out of 10 young people, most of whom do not get help. The strong response to this campaign is evidence that our approach is working. We acknowledge the challenges faced by individuals with these disorders and their families. We hope to both generate a national dialogue that will end the stigma surrounding childhood psychiatric disorders and advance the science, giving children the help they need and deserve. We want this campaign to be a wake up call. Please join the dialogue.
The NAS made a similar mistake a few years ago. They accepted a pro bono offer from an advertising agency. Fotunately the resulting campaign was baffling rather than insulting and exploitative. Now they consult with autistic people before launching campaigns about them. Perhaps NYU should follow their example.
EDIT
Thanks to Do’C over at Autism Street for alerting me to Ari Ne’eman’s note and call to action on the Autism Self Advocacy Network web site. ASAN have taken on the task of co-ordinating responses to the NYU ad campaign. Please visit their web site to learn how you can help.
December 9th, 2007
Posted by
Mike |
Autism, National Autistic Society, Neurodiversity, autism acceptance |
9 comments
