This appalling story arrived in my inbox from a person I trust.
Please sign the petition to get Steven home and share his story with your networks.
The campaign to bring Steven back to his family home starts here.
Steven is a 20 year old man with autism. He loves music, swimming and Mr Bean.
Since December 2009, Steven has been incarcerated in a care home, against his and his family’s wishes. He went away for three days respite as his father was unwell and hasn’t been home since.
On 7th July, the London Borough of Hillingdon decided Steven would never be allowed to return to the family home as he is too great a risk.
Since being in the care home, occurrences of his challenging behaviour have risen by over 300%.
In April, Steven was served a “Deprivation of Liberty” order as he escaped from the home and removed a man’s glasses. No staff on duty noticed he was gone until he was out on the main road.
His clothes are repeatedly torn and he appears with bite marks on his arms and hands (not self inflicted).
He has tried to escape on several occasions.
He is repeatedly forced into a double bind situation where the managing authority create a situation that he finds difficult to understand and gets upset about. Steven reacts to the situation and then his reaction is used as evidence that he is too challenging.
In the last two weeks the London Borough of Hillingdon have cancelled Steven’s much look foward to holiday and his overnight stays at home.
He is 20 years old and could be facing the rest of his life in an institution
The Deprivation of Liberty Safeguards (DOLS) where only introduced after an autistic man successfully brought a case before the European Court of Human Rights. According to the Deprivation of Liberty Safeguards Code of Practise:
The deprivation of liberty safeguards were introduced to provide a legal
framework around the deprivation of liberty. Specifically, they were introduced
to prevent breaches of the European Convention on Human Rights (ECHR)
such as the one identified by the judgment of the European Court of Human
Rights (ECtHR) in the case of HL v the United Kingdom3 (commonly referred
to as the ‘Bournewood’ judgment). The case concerned an autistic man
(HL) with a learning disability, who lacked the capacity to decide whether he
should be admitted to hospital for specific treatment. He was admitted on
an informal basis under common law in his best interests, but this decision
was challenged by HL’s carers. In its judgment, the ECtHR held that this
admission constituted a deprivation of HL’s liberty and, further, that:
- the deprivation of liberty had not been in accordance with ‘a procedure prescribed by law’ and was, therefore, in breach of Article 5(1) of the ECHR, and
- there had been a contravention of Article 5(4) of the ECHR because HL had no means of applying quickly to a court to see if the deprivation of liberty was lawful.
To prevent further similar breaches of the ECHR, the Mental Capacity
Act 2005 has been amended to provide safeguards for people who lack
capacity specifically to consent to treatment or care in either a hospital
or a care home4 that, in their own best interests, can only be provided in
circumstances that amount to a deprivation of liberty, and where detention
under the Mental Health Act 1983 is not appropriate for the person at that
time. These safeguards are referred to in this Code of Practice as ‘deprivation
of liberty safeguards’.
The code of Practice is supposed to supplement and not replace the provisions of the Mental Capacity Act (2005). According to the government’s own strategy for adults with autism, Fulfilling and Rewarding Lives:
Mental Capacity Act (2005) – came into force in 2007 providing a clearer legal framework for people who lack capacity, for those caring for them and for the professionals who work with them by setting out key principles. It puts people who lack capacity at the heart of the decision-making process – this includes people with autism and those who may not find it easy to express their choice in words. The Act requires an assumption that people have capacity to make decisions for themselves unless there is evidence to the contrary.
Fulfilling and Rewarding Lives specifically instructs local authorities to take account of the views of autistic adults, their carers and their families when assessing need.
Such an assessment, carried out by trained practitioners and taking account of the communication needs of adults with autism, will be the key to unlocking care services throughout a person’s lifetime. It will provide a comprehensive view of the person’s condition and how it affects them – drawing on the experiences andviews of the person themselves, their family
and carers.
The DOLS Code of Practice is also clear about the need to take account of the person’s family. Too often in the past parents have felt excluded by adult services because legally they have no rights over their children once they become adults. Decision makers are obliged, under the Code of Practice to take account of
the views of the relevant person, their family or carers? Do any of them object to the measures?
They have a duty to minimize the likelihood of a Deprivation of Liberty Order
by minimising the restrictions imposed and ensuring the views of the relevant person, their family or carers. Do any of them object to the measures?(2.7 page 18)
Following a Deprivation of Liberty Order they are obliged to
Take proper steps to help the relevant person retain contact with
family, friends and carers.
Remember that Hillingdon Borough Council have stopped Steven’s home visits and decided he will never be allowed to return to the family home. His family feel so excluded from the decision making progress that they have resorted to an online petition in order to try and exert some influence on the Council.
It is unclear on the evidence so far whether or not these “safeguards” will be used primarily to protect the rights of people like Steven Neary or whether they will be used to protect local authorities who will continue to be able to breach the human rights of those in their care providing they can show that they have followed the letter if not the spirit of the law.
July 18th, 2010
Posted by
Mike |
adults, disability rights, services |
10 comments
There has been some consternation amongst critics of Autism Speaks at the news that it has been designated a non-governmental organization (NGO) associated with the United Nations Department of Public Information (DPI). Both LeftBrainRightBrain and The New Republic have articles explaining why this is not a good thing for the autistic community and their allies. Autism Speaks has a dubious record in misrepresenting the facts about autism and its refusal to appoint any autistic person to a position of influence or authority undermines its stated aim of achieving one voice for the autism community.
I can think of at least three routes to achieving one voice.
- A consensus position is achieved based on discussions involving the whole autism community.
- A single view prevails by force of argument based on the evidence.
- A single view held by a powerful organization prevails by force majeure.
In my opinion we are still a long way off developing the means to pursue route one. I think that the whole community is going to have to learn to live with some sort of pluralism in which many voices are heard and listened to. We are unlikely to achieve one voice except by force majeure and Autism Speaks seems to agree. It is using the wealth and power of its founders to impose their view as the voice of the autism community.
Does this mean that it will now impose its view on the United Nations? I think this is unlikely. There are thousands of NGOs involved with the UN. 1664 are associated with the DPI alone. At present I believe Autism Speaks is the only autism related NGO. But there is nothing to stop other organizations from applying. I will suggest this within the National Autistic Society. So long as you are a not for profit organization that can meet the criteria, you are free to apply.
I have seen suggestions that its critics should protest at UN recognition for Autism Speaks. This will have no effect on the United Nations and could reflect badly on us. Autism Speaks reflects the consensus opinion on autism in the larger community more so than do proponents of neurodiversity. It is much better, in my opinion, to raise our voices rather than be seen as trying to silence theirs. Autism speaks with many voices would be a possible slogan to organize around in the run up to World Autism Day on April 2nd next year. Getting a positive message for autism acceptance and the ideas of neurodiversity into the public arena will serve us better than a negative campaign.
Meanwhile, Autism Speaks official recognition by the UN could be quite useful. A few of us are waiting for answers to questions about autistic representation within Autism Speaks. Accoding to the criteria for recognition
the NGO should have statutes/by-laws providing for a transparent process of making decisions, elections of officers and members.
In view of their official status as an NGO I think it is in order to repeat our questions and to copy our requests for transparency to the DPI at the UN. Contact details for the DPI are here.
It is also the sixtieth anniversary of the Universal Declaration of Human Rights. Although it seems to be honoured more in the breach than in the observance, this is an important campaigning tool. Another of the criteria for recognition states that
the NGO must support and respect the principles of the Charter of the UN and have a clear mission statement with those principles.
So how does Autism Speaks propose to mark the sixtieth anniversary? In particular, what steps do they propose within the autistic community
to ensure that every individual, no matter where they live, or in what circumstances, understands the rights to which the Universal Declaration entitles him or her.
It would be instructive for self advocacy organizations within the autistic community to approach “the world’s largest autism advocacy organization” and “officially designated a non-governmental organization (NGO) associated with the United Nations Department of Public Information (DPI)“ to ask for its support in campaigning for the rights enshrined in the Universal Declaration to be applied to autistic people everywhere. It would seem appropriate to use this opportunity to call upon the incoming President to announce a date when the USA will ratify the UN Convention on the Rights of Persons with Disabilities.
Now that Autism Speaks is open to public scrutiny as an official NGO of the United Nations I think that proposals for joint activity around principles held in common with the UN are a positive way to get our messages across and challenge the old thinking.
December 26th, 2008
Posted by
Mike |
Autism Speaks, Neurodiversity, Uncategorized, disability rights |
25 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
Barbara Wilson, the National Autistic Society Regional Councillor for the South West has had a petition to the Prime Minister accepted by the office of the Prime Minister. UK citiizens can sign the petition on the Prime Minister’s website
The petition reads:
We the undersigned petition the Prime Minister to make it
compulsory for Local Authorities, NHS and Social Care to work
together to produce a strategy with guidelines for Autism /
Asperger syndrome including diagnosis, pathways to services
and criteria that are realistic and address supportive and
lifelong support,rather than waiting for people to fall into
crisis before services respond. Also to create a national data
base of the numbers of people diagnosed as being on the ASD
spectrum.
for people on the Autism/Asperger Spectrum specifically to
address the issues on Fair Access to Care and support that many
consequently fall through the services. Also adopting a clear
pathway to services for adults on the spectrum who currently
are referred to as ‘high functioning’ rather than awaiting
their move into ‘crisis’ To include more preventative and
supportive approach. We need to have a national data base on
the numbers of people affected. Currently services are only
estimating numbers consequently do not see the need for
strategies and specific services.
I am sure this petition will strike a chord with many people in the UK and chime with the experience of autistic people and their families around the world. In the UK we have plenty of good practise guidelines for health, education and social care but very little effort on the part of government to mandate these guidelines or provide adequate funding. Sometimes these guidelines come together and are implemented in the provision of children’s services. Even so,
-
Over 50% of children are not in the kind of school their parents believe would best support them.
-
66% of parents said their choice of school was limited by a lack of appropriate placements for children with autism in their local area.
-
Only 30% of parents of children in mainstream education are satisfied with the level of understanding of autism
across the school.
-
In mainstream schools only 27% of parents say that all their child’s teachers could adjust their approach and
teaching materials - and therefore meet their legal duties under the SEN and Disability Act (2001).
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Special Educational Needs Co-ordinators (SENCOs) are responsible for co-ordinating provision for children with
autism in schools, yet 23% of parents are dissatisfied with SENCOs’ level of understanding of autism.
-
Over 40% of children with autism have been bullied at school.
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45% of parents say it took over a year for their child to receive any support.
-
There are more appeals to the Special Educational Needs (SEN) and Disability Tribunal in England about
autism than any other type of SEN. 79% of parents who appealed to the Tribunal in this survey won their case.
-
Parents say the biggest gap in provision is social skills programmes.
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1 in 5 children with autism has been excluded from school, and 67% of these have been excluded more than once.
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Only 53% of young people aged 14 to 19 years have transition plans, falling to just 34% of students in mainstream schools.
Source: Make Schools Makes Sense Autism and education: the reality for families today. (NAS 2006)
The Makes Schools Make Sense Campaign did make a difference. The government has responded to our concerns and made a number of commitments designed to improve education for autistic children in England. That still leaves the rest of the United Kingdom. But it is a start.
If the situation for children is bad, then for adults it is dire. This year, the Think Differently About Autism Campaign is focusing on adults under the slogan “I exist” Its main points are that,
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Nearly two thirds (63%) of adults with autism do not have enough support to meet their needs.
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92% of parents are worried about their son or daughter’s future when they are no longer able to care for them.
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61% of adults with autism rely on their family financially and 40% live with their parents.
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60% of parents believed that a lack of support has led to higher support needs later on.
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At least 1 in 3 adults with autism are experiencing severe mental health difficulties due to a lack of support.
Source: I Exist. The message from adults with autism in England (NAS 2008)
Barbara’s petition can only help to focus attention on these problems. Autistic people and their families, along with autism professionals and advocacy organizations spend a lot of time arguing about important issues like causation, cure and the various interventions that are supposed to help autistic people fit in with society. But while we may disagree on how to assist autistic people in coping with society, we should all agree to support Barbara’s petition and campaign to make society better able to understand and cope with autism.
NB. Throughout this blog post I refer to England and link to materials pertaining to NAS campaigns in England. This is a consequence of the different forms of government that pertain throughout the United Kingdom and the way these differences impact upon the provision of services. There are parallel campaigns in Scotland, Northern Ireland and Wales that take account of these differences.
April 23rd, 2008
Posted by
Mike |
Autism rights, National Autistic Society, adults, autism advocacy, disability rights, education, government, parents |
4 comments
Shock Tactics is yet another detailed account of the abuse carried out on people at the Judge Rotenberg Center. Over half the inmates at this institution are wired to a device called the GED that delivers painful electric shocks at the push of a button. At one time the use of electric shocks on severely disturbed children was given dubious justification by the life threatening severity of their self injurious behaviour. Better GED than dead as it were. The reporter, Jennifer Gonnerman, gives credence to this when she writes:
Before we set off on our tour of the institution, there’s something Israel wants me to see: Before & After, a home-made movie featuring six of his most severe cases. He has been using some of the same grainy footage for more than two decades, showing it to parents of prospective students as well as reporters. It shows how in 1977, an 11-year-old girl, Caroline, arrives at the school strapped on a stretcher, her head encased in a helmet. Next, free from restraints, she tries to smash her helmeted head against the floor. In 1981 it shows Janine, also 11, who shrieks and slams her head against the ground, a table, the door. Bald spots testify to the severity of her troubles; she’s yanked out so much hair it’s half gone. Compared with these scenes, the “after” footage looks almost unbelievable: Janine splashes in a pool; Caroline grins as she sits in a chair at a beauty salon.
“These are children for whom positive-only procedures did not work, drugs did not work,” says Israel. “And if it wasn’t for this treatment, some of these people would not be alive.” The video is very persuasive: the girls’ self-abuse is so violent and so frightening it almost makes me want to grab a GED remote and push the button myself. Of course, this is precisely the point.
Then she meets two of these “success stories. ”
Considering how compelling the after footage is, I am surprised to learn that five of the six children featured in it are still here. “This is Caroline,” one of my escorts says later as we walk down a corridor. Without an introduction, I would not have known. Caroline, 39, slumps forward in a wheelchair, her fists balled up, head covered by a red helmet. “Blow me a kiss, Caroline,” Israel says. She doesn’t respond.
A few minutes later, I meet 36-year-old Janine, who appears in much better shape. She’s not wearing a helmet and has a full head of black hair. She’s also got a backpack on her shoulders and canvas straps hanging from her legs, the telltale sign that electrodes are attached to both calves. For 16 years – nearly half her life – Janine has been hooked up to Israel’s shock device. A few years ago, when the shocks began to lose their effect, the staff switched the devices inside her backpack to the much more painful GED-4.
The Judge Rotenberg Center no longer restricts itself to severely handicapped children who self harm. More “high functioning” individuals with a range of difficulties including ADHD and Bipolar Disorder get the same electric shock ”treatment” for the most trivial “offences” like getting out their seat without permission.
Matthew Israel, the director and founder of the JRC claims to be a behaviourist in the tradition of B. F. Skinner, under whom he studied in the 1950s. He took up the idea of using electric shock from fellow behaviourist Ivor Lovaas. Lovaas no longer uses electric shocks because:
“These people are so used to pain that they can adapt to almost any kind of aversive you give them.”
Israel met the same difficulty. His answer was to turn up the power and use even more painful devices. What I want to know is how long are we going to put up with college educated professors telling us it OK to inflict pain on the most helpless and vulnerable people in society? Even Dr Bernard of the Maudsley Hospital in London is quoted in the article as saying,
It’s terrible to use something like that without clear evidence to show it works.
There have been attempts to close the JRC. But Israel has always relied on the tesimonials of satisfied parents, motivated by the fear that if JRC closes there is nowhere else for their children. It seems that the only criteria for admission is that you have been written off and rejected by everyone else. Once inside your fate is forgotten.
What I find most inexplicable is the support for JRC by ex inmates. Stockholm Syndrome maybe? This is Katie Spartichino:
Katie, 19, tells me she overdosed on pills at nine, spent her early adolescence in and out of psychiatric wards, was hooked up to the GED at 16, and stayed on the device for two years. “This is a great place,” she says. “It took me off all my medicine. I was close to 200lb and I’m 160 now.” But when she first had to wear the electrodes, she says: “I cried. I kind of felt like I was walking on eggshells; I had to watch everything I said. Sometimes a curse word would just come out of my mouth. So being on the GEDs and knowing that swearing was a targeted behaviour where I’d receive a [GED] application, it really got me to think twice before I said something rude.”
The most chilling part of the whole story is one of apparent tenderness.
As Katie speaks, LaChance runs her fingers through Katie’s hair again and again. The gesture is so deliberate it draws my attention. I wonder if it’s just an expression of affection – or something more, like a reward.
To me, LaChance’s action screams of an abusive relationship, Katie allowing herself to be treated like a child by someone who probably inflicted pain on her in the past. And when Katie admits that she sometimes still swears
The hair-stroking stops. LaChance turns to Katie. “I hope you’re not going to tell me you’re aggressive.”
The last time I heard that voice it was Nurse Ratched in One Flew over the Cuckoo’s Nest.
“Oh, no, that’s gone,” Katie says. “No, no, no. The worst thing I do sometimes is me and my mom get into little arguments.”
Poor Katie, still in fear of that voice, still in thrall. And she is one of the lucky ones. She got out.
JUDGE ROTENBERG CENTER - CLOSE IT DOWN!
October 28th, 2007
Posted by
Mike |
Autism rights, Judge Rotenberg Center, disability rights |
9 comments
Derrick Jeffries - Person with Asperger’s Syndrome and Nancy Weiss - Co-Director, The National Leadership Consortium on Developmental Disabilities, Center for Disabilities Studies, University of Delaware have issued
A Call for Ethical and Unprejudiced Leadership and Practice in the Field
which I was pleased to sign. The letter begins like this:
“This letter is to the American Psychological Association (hereafter referred to as APA), and to all professionals in the field of psychology. This letter calls upon APA and professionals who adhere to the APA Code of Ethics to act in a manner that is ethical and consistent with that Code of Ethics. Two recent APA documents are relevant to this call to action. They are, the 2006 “Resolution Against Torture and Other Cruel, Inhuman, and Degrading Treatment or punishment” (hereafter referred to as 2006 Resolution), and the 2007 “Reaffirmation of the American Psychological Association Position Against Torture and Other Cruel, Inhuman, or Degrading Treatment or Punishment and Its Application to Individuals Defined in the United States Code as “Enemy Combatants”" (hereafter referred to as 2007 Resolution). With fervor, we are advocating for people with autism, developmental differences, and mental health challenges; urgently entreating that they may be given the same respect with regard to human rights as alleged “Enemy Combatants,” or any other human beings. As professionals who adhere to the APA Code of Ethics, nothing less than an unprejudiced stance in this matter should be considered acceptable.
“Currently, children and young adults with autism, developmental differences, and mental health challenges are being treated in a manner that clearly meets the definition of Torture and Other Cruel, Inhuman, and Degrading Treatment or Punishment, as defined by the two previously mentioned APA documents. The Judge Rotenberg Educational Center (hereafter referred to as JRC) in Massachusetts has a long history of using electric shock, food deprivation and prolonged mechanical restraint, as well as other painful and dehumanizing aversive techniques.”
Please go to http://disabledsoapbox.blogspot.com/ to read the letter in full and add your support. Meanwhile, anyone interested in debating with Matthew Israel should visit the Justice, the independent student newspaper of Brandeis University. Nathan Robinson from Brandeis Students United Against The Judge Rotenberg Center has written an opinion piece about the JRC that has provoked responses from Israel and equally vigorous replies from Nathan and others.
October 14th, 2007
Posted by
Mike |
Autism rights, Judge Rotenberg Center, disability rights, science |
no comments
Autism is a hot topic for scientists engaged in brain research. If you can link your research to autism it may help you to access additional funding that is available in the USA. In response to a determined campaign by parents and lobby groups Congress passed the Combating Autism Act which sanctioned a substantial increase in the funds available for research into the causes of autism. At the same time the high profile pressure group Autism Speaks has, by a series of mergers and alliances, notably with Cure Autism Now! and the National Alliance for Autism Research, emerged as a leading funder of autism research. In June it announced research grants of $15.2 million USD. Then there are private trusts like the Simons Foundation which is providing long term funding for autism research at Yale($2.5 million USD), Cold Spring Harbour, ($13.8 million USD), Michigan($2.8 million USD), MIT($7.5 million USD) and Rockefeller ($7.7 million USD).
This is serious money. One hopes that it attracts serious research. The Chapel Hill School of Medicine at the University of North Carolina is a serious research institute. According to Science Daily they have made an important discovery that
may lead to advances in understanding autism spectrum disorders, as recently, human neurexins have been identified as a genetic risk factor for autism.
They made this important discovery while researching the role of neurexin in Drosophila, that is fruit flies to the rest of us. Drosophila are an important part of the biological research toolkit. Their relatively simple genome and rapid reproductive cycle have made them a favourite of biologists researching the mechanics of evolution. But autistic fruit flies? Autism is a complex social disorder. Fruit flies are not complex social beings.
Neurexin is a basic prerequisite for neuronal connectivity. Without it the fruit flies barely survived. Movement was severely impaired. These are primitive creatures compared to us. I would anticipate that a similar lack in humans would have far more devastating results. Autism would be the least of our worries. Never mind. The putative autism connection cannot have done any harm in obtaining funding from
- the National Institute of General Medical Sciences,
- National Institute of Neurological Disorders and Stroke
- the National Institute of Mental Health
- the state of North Carolina.
Moving up the food chain we find a mouse study. Thanks to Mady Hornig mouse studies of autism have received a bad press. But this one is different. Thanks again to Science Daily for telling us that
Howard Hughes Medical Institute researchers have genetically engineered mice that harbor the same genetic mutation found in some people with autism and Asperger syndrome.
The gene in question codes for for a protein called neuroligin-3.
This protein functions as a cell adhesion molecule in synapses, the junctions that connect neurons in the brain and allow them to communicate with each other. Synapses are essential to all brain activities, such as perception, behavior, memory, and thinking. Südhof said that the neuroligin-3 mutation that his team recapitulated in the mice has been identified in some people with genetic conditions known as autism spectrum disorders (ASDs). Mutations in proteins that interact with neuroligin-3 have also been detected in some people with ASDs.
Neurexin is one of these detected proteins. (remember the fruit flies?) Is this a double whammy that damns autistic people/mice forever? Apparently not. These genetically engineered, autistic mice did rather more than “barely survive.” They showed diminished social interaction but improved cognitive performance compared to neurotypical mice. This is automatically seen as a deficit. But surely progress is driven by those individuals who turn their back on the herd and consider the external world? Never mind. In the wacky world of autism research, conformity is valued over diversity and sociability scores higher than intelligence.
But my take home message is that geek mice rule OK! [or at least they ought to]
September 6th, 2007
Posted by
Mike |
Autism, Autism rights, Neurodiversity, disability rights, science |
7 comments
The latest edition of Communication, the members magazine of the National Autistic Society contains two interesting articles on genetic research.
GENE GENIE by Professor Anthony Bailey
The first article, by Professor Anthony Bailey of Oxford University’s Autism Research Unit, seeks to summarize recent developments in genetic research. Considering the complexity of the subject and the nature of his audience (mainly parent members of the NAS like myself with no specialist scientific training) he does a remarkable job in under a 1000 words. I find that those experts who can write coherent and concise accounts of their work for a lay audience are usually the ones with the soundest grasp of their subject matter. Professor Bailey is no exception.
He starts by emphasizing how little we know. This cannot be stressed too much. There have been a spate of recent reports in which journalists, and some scientists who ought to know better, have hyped up the latest genetic “breakthroughs” as harbingers of an imminent cure. But all we have so far are “candidate” genes. This is not to diminish the work of the scientists involved. Genetic research has been marked by a massive collaboration of scientific and funding institutions. It is detailed and difficult work that is only now beginning to accelerate with access to improved technology.
The most likely candidates are genes on the long arm of chromosome 7 and on chromosome 2. Again, caution is necessary. These are not genes for autism. They are potential genes for autism susceptibility. There is no single gene for autism. According to Professor Bailey, “the risk of developing autism seems to be conferred by the interaction between at least 3 or 4 genes (and possibly many more) and there were no clues as to what these genes might code for.”
When a gene is finally identified scientists will still want to learn more about what it does, when it is expressed and which other genes it interacts with. They will also try and identify the environmental factors at work. These factors need not be “known neurotoxins.” They may be neutral or even beneficial in the absence of particular genetic combinations.
[OK I realize that some of my readers may regard autism as a beneficial outcome. I look forward to your comments so that we can explore the nuances of meaning around accepting autism and welcoming autism.]
Our knowledge of genetic factors in autism leans heavily on work with families where more than one sibling is affected. The evidence from twin studies is that autism is a highly heritable condition. So it makes sense to look at families where this is most obviously the case when seeking the genetic causes of autism. But many parents who read Professor Bailey’s article will have no obvious genetic traits of autism in their families. A new study may help to explain this. Dr Michael Wigler is a molecular geneticist at Cold Spring Harbor Laboraory in New York and he has just published a pilot study suggesting that spontaneous mutations in the parents’ sperm or egg cells may be the cause of autism in a majority of cases. Prometheus discusses this in more detail on his blog, Photon in the Darkness, and provides a link to Dr Wigler’s paper.
This all goes to show how complex the science is. It is increasingly unlikely that we will find a simple genetic cause or even a simple genetic predisposition that relies on an obvious and preventable environmental trigger for autism. I am fascinated by the science of autism but it is not going to provide any immediate answers or easy fixes. Social policy will have a greater impact on the quality of life for autistic people in the foreseeable future. This is why public attitudes to autism are so important - a point addressed in the second article.
CHOOSING THE FUTURE by Dr. Phiippa Russell
Dr Russell is a Disability Rights Commissioner and Disability Policy Advisor to the National Childen’s Bureau. She wrote about the ethical implications for genetic testing and research. She began by pointing out that alongside the potential health benefits of genetic science there is also the danger that “the primary focus of new genetic technology might not be on improving the quality of life and healthcare for vulnerable individuals. Instead, it could be lead to eugenic attitudes, which devalue disabled people and encourage discrimination in employment and other areas of life.”
There are some areas where genetic screening ought to be non-controversial. But what if it leads to discrimination in obtaining employment or essential life insurance? Dr Russell has an interesting take on this. She argues that women with a known genetic susceptibility to breast cancer may acually live longer than other women who are less likely to have regular mammograms and more likely to have their cancer detected later, when treatment options are less effective.
This kind of logic may appeal to actuaries. But most people will react negatively to the idea of disability, especially if it is a genetic disability that is predictable and, disregarding David Hume, therefore ought to be prevented. Dr Russell thinks that “If we accept this view, then we risk
- reducing embryos, foetuses and, in consequence, individuals to their genetic characteristics, thereby reversing the progress made concerning human and civil rights for disabled people
- increasing responsibility (and social exclusion) for familes with disabled children, where the disability was related to genetic predisposition
- ignoring the multiple talents of disabled people and the real contribution which they make to family and society.”
Genetic science will advance, regardless of the ethical dilemmas it creates. People with disabilities ought to benefit from these advances. But according to Dr Russell “there are challenges in avoiding unnecessarily negative pictures of quality of life and value to the local community. “
She does not mention autism by name but goes on to say, “Many readers will be both aware and proud of their disability. It is unique to them and carries benefits as well as some challenges.”
Dr Russell ends with his quote from an unidentified disabled man.
“Disabled people themselves must join the debate about the ethics of genetic testing - you cannot close Pandora’s box once it has been opened, but the challenge is in using new information proactively to improve quality of life, not to shut down someone’s work and other opportunities because of poor understanding and low expectations. Knowledge is power - but it is essential that it is controlled by the person directly affected and used for his or her benefit, rather than used by others as a means of social exclusion.”
This is one reason why next month’s meeting on the Politics of Autism is so important. Anyone who can attend should ring up and book a place now.
According to Communication “The NAS is keen to hear the views of members and others on this complex issue … email communication@nas.org.uk with the words ‘gene ethics’ in the subject line.” The full articles in Communication are only available to NAS members. If you want to join email membership@nas.org.uk
I am greatly encouraged by the NAS inviting this sort of debate. I do urge people to respond.
August 27th, 2007
Posted by
Mike |
Autism, Autism rights, National Autistic Society, disability rights, ethics, genetic research, science |
9 comments
This article is in today’s Guardian.
It provides a useful introduction to the positions of some of the supporters of autism acceptance, including myself and fellow bloggers Kev Leitch and Larry Arnold.
The article begins:
Today, an event run by and for autistic people kicks off in Somerset, the latest act of a burgeoning autism rights movement. Emine Saner reports on the campaign to celebrate difference, rather than cure it.
It contains some really good insights from the people she interviewed. For example, Gareth Nelson (pictured above) of Aspies for Freedom says:
I don’t think you should cure something that isn’t purely negative, It’s the same as black people, who seem to be more at risk of sickle cell disease than white people but you’re not going to attempt to cure ‘blackness’ to cure sickle cell.
The only unfortunate thing about the article is that it does play up the role of Aspies for Freedom (AFF) at the expense of other initiatives. I was surprised to read that:
Nelson, with his wife Amy, who also has AS, is leading the UK’s autism rights movement.
And I am not convinced that AFF has 20000 members when the discussion forum on their webite has less than 6000 members and many of those are from overseas. This is unfortunate as one of the strengths of the emergent movement for autism rights and acceptance for autistic people is that there are many voices and all are free to explore important differences as well as points of agreement. As an example, Larry Arnold and I work together within the structures of the NAS and are in broad agreement on many issues. But we differ sharply in our attitude to the role of scientific research in autism.
I would also have liked to read more about Autscape. This event is unique in Europe. It takes its inspiration from a similar event in America called Autreat. Like the AFF, Autscape began three years ago but it makes no leadership claims. Instead it aims to:
- Serve as a haven created by autistic people. An autistic space.
- Provide a venue where the majority of speakers will be autistic.
- Create possibilities within the conference for autistic people to communicate and socialise with other autistic people on their own terms.
- Educate and inform on issues arising from within the autistic community.
- Advocacy and self-advocacy.
- Promote acceptance of autistic people in their own environments.
- Enhance the lives of autistic people through empowerment, advocacy, and a nice relaxing time.
But these minor criticisms should not detract from a very valuable article in which the author shows respect for autistic people and accurately reports their views.
August 7th, 2007
Posted by
Mike |
Autism, Autism rights, Neurodiversity, aspergers, autism acceptance, disability rights |
37 comments
Moving tale that highlights genetic condition becomes sleeper hit of the year
Paul Harris in New York
Sunday June 17, 2007
The Observer
Like many good stories, The Memory Keeper’s Daughter begins on a dark and snowy night. But, unlike most first novels from barely known authors, the book has gone on to be one of the biggest hits in recent American publishing. It has sold more than 3.5 million copies in America and is due for publication in at least 15 other countries. It has done all this despite - or perhaps because - it is about one of the most emotional and difficult situations any new parents might face: a child being born with Down’s syndrome.
According to the Observer
The book has been a huge hit among parents of Down’s children and those who work with them. They have praised its portrayal of a child leading a full life and bringing happiness to a parent.
This is all very positive but I wonder, if the writer had interviewed people with Downs, would they have praised it because it portrayed a child with Downs bringing happiness to a parent? I have always found that the joy of parenthood derives from bringing happiness to my children. Perhaps this is what the writer meant, that parents can rejoice in their children’s happiness.
Apparently many prospective parents of Downs children do not believe that their child will be happy. Over 90 per cent of Downs fetuses that are identified by prenatal screening are aborted. The UK Downs Syndrome Association estimates that 10 in 10,000 live births are Downs. Earlier estimates, before amniocentesis became common, ranged from 15 to 24 in 10,000.
The relevance to autism
With Downs we know exactly where the genetic abnormality lies but have no idea why one of the parents produces a sperm or egg cell with an extra chromosome. We do not understand how this extra chromsome works to produce the features of Downs Syndrome and nearly 50 years after Professor LeJuene discovered the trisomy on chromosome 21 we are still a long way off being able to reverse or ameliorate its effects. All we can do is identify around a half of Downs pregnancies and offer an abortion.
A lot of money is being spent on research into genetic markers for autism. There is not just one, there are dozens of candidate genes for autism and, unlike Downs which is present from conception, there are as yet unknown environmental factors which may contribute to gene expression. Yet every discovery is trumpeted as leading to a possible cure or a genetic test to prevent autistic babies from being born.
This is damaging for a number of reasons.
- If a cure is thought to be just a few decades away this will divert funding way from research into ways of improving outcomes for people who are already autistic.
- To justify the huge expenditure autism has to be hyped as a health crisis that is devastating lives, when in fact it is lack of understanding and the irrational fears that this sort of hype encourages that are the biggest obstacles for many families.
- If autism is so unremittingly awful and the genetic solution is hyped as twenty years down the line parents of newly diagnosed children are going to be vulnerable to the biomedical quackery that is already entrenched among some sections of parents.
- Existing autistics will be viewed at best as victims and not as human beings with equal rights to acceptance and ethical treatment.
As public opinion increasingly lines up behind scientific opinion on the unfeasibility of the autism vaccine hypothesis it is important that we speak up for autism acceptance and challenge the triumphalism in those quarters of the mainstream medical and scientific research community that seek to eliminate diversity.
June 17th, 2007
Posted by
Mike |
Autism, Downs Syndrome, Neurodiversity, Quackery in Autism, disability rights, genetic research, parents |
7 comments
