Action For Autism

Autism Hub and Neurodiversity

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 | 30 comments

Conspiracies, conflicts of interest and the bigger picture.

CONSPIRACY

Remember the outrageous subpoena against Kathleen Seidel that was recently quashed? Clifford Shoemaker, the author of the subpoena was ordered to show cause,

“why he should not be sanctioned under Fed R Civ P 11 – see Fed R Civ P 45(a)(2)(B) which requires that a deposition subpoena be issued from the court in which the deposition is to occur and Fed R Civ P 45 (c)(1) commanding counsel to avoid burdensome subpoenas. A failure to appear will result in notification of Mr Shoemaker’s conduct to the Presiding Judge in the Eastern District of Virginia.”

His reply is basically that “a mere mother and housewife” could not possibly have written Neurodiversity.com on her own. She must have been prompted by malice and given material aid by the drug companies to pursue a campaign of intimidation against Clifford Shoemaker, his clients and his pet witness, Mark Geier.  It is alleged that Kathleen is part of a conspiracy to protect the drug companies from the legitimate claims of parents of vaccine damaged children. As Kathleen says in her latest entry, Welcome to My Conspiracy

These documents offer a remarkable exposition of the grandiose, cartoonish conspiracy fantasies entertained by advocates of the concept of autism as toxicity and tort, and the arguments of those who seek to justify the perversion of legal processes in order to oppress their critics.

CONFLICT OF INTEREST

Imagine if a piece of research exonerating vaccines was put forward by a drug company employee whose husband was working for the defense team at the vaccine court. The parents who claim that their autistic children are vaccine damaged would  quite rightly be appalled if such a potential conflict of interest was concealed. This weekend three pieces of research were presented at the International Meeting for Autism Research (IMFAR) in London. All were co-authored by Dr Hewitson, all seek to demonstrate a link between vaccines and autism and the science has already been severely critiqued by Orac.

But there is more. Over on LeftBrain/RightBrain Kev has revealed that Dr Hewitson has her own potential conflicts of interest.

1. She and her husband have an autistic child and are pursuing a claim for vaccine injury.
2. Her husband is employed by one of her co-authors, Andrew Wakefield at Thoughtful House.
3. She is affiliated to Defeat Autism Now.

This does not necessarily invalidate her work. But one wonders why Dan Olmsted, who is singing her praises over on The Age of Autism, neglected to include these details in his piece. Did he know? Did IMFAR know when they accepted her presentations? Of course it could just be another part of Kathleen Seidel’s conspiracy against anti-vaccine campaigners.

THE BIGGER PICTURE

It is important to scrutinize the claims of DANites, anti-vaxxers and their friends in the media. But in the wider world of autism there are more serious questions to engage with that pertain to the mainstream research and medical communities who exercise so much more influence over the world of autism than those on the pseudo-scientific fringe.

Is it right to refer to autistic people and “healthy” controls in a scientific presentation? How far are we justified in questioning the assumptions and methodology behind a lot of autism research? Under what circumstances, if any, is the medical model capable of yielding useful results? Who is paying attention to the ethical dimensions surrounding informed consent from autistic research subjects?

Larry Arnold, an autistic person  who is also an autism researcher and a member of the board of trustees of the National Autistic Society raises these and similar questions in his initial reflections on IMFAR. After the tiresome but necessary task, so ably done by Kev, Orac and Kathleen, of dealing with some of autism’s stinkers it is good to be able to turn to an autism thinker like Larry.

May 19th, 2008 Posted by Mike | Autism rights, ethics, science, vaccines | 16 comments

Judge Rotenberg Center - every law they break

To follow on from yesterday’s post on the JRC, it sems that while it may be legal under Massachussetts State Law to detain people against their will and torture them with electric shocks, it is illegal to record their screams without their express consent. This email explains it all. It sounds petty compared to the daily misery endured by the inmates at JRC. But, hey, whatever helps to close them down. Please respond directly to Ken Mollins if you have any information pertaining to this or to the grand jury investigation of abuses at the Judge Rotenberg Center.

Dear fellow advocates: 

This latest letter from Attorney Kenneth Mollins exposes the illegal practice of recording all conversations at the Judge Rotenberg Educational Center in violation of Massachusetts State Law.
Please forward this letter to others and post on lists.  Permission is granted by Kenneth Mollins.

If any readers have had their privacy violated at JRC you may want to contact Kenneth Mollins, or myself and I will forward your information to Ken. Perhaps this can be a concerted effort. You may also want to address your own personal letter to Attorney General Martha Coakley if you have been violated in this manner, or if you are aware of other criminal matters at JRC.

Thank you, for your active advocacy. Please remember that change can only occur if we take action! Our silence is only golden for Dr. Israel.

May 16, 2008

Via Facsimile (508)795-1991

Attorney General Martha Coakley
One Exchange Place, 3rd Floor
Worcester, MA 01608

Re:  Judge Rotenberg Center

Dear Attorney General Coakley:

 I am writing concerning ongoing apparent criminal activity that is occurring on a daily basis at the Judge Rotenberg Center (“JRC”) in Canton, Massachusetts, and where numerous people are being subjected to said criminal activities on a daily basis. Mass. Ann. Laws ch. 272, §99 states:

It is a crime to record any conversation, whether oral or wire, without the consent of all parties in Massachusetts…

 I have spoken with numerous prior employees of the JRC who all advise me that the entire school and residences are subject to the recording of conversations taken therein. These recordings not only apply to the students and faculty, but to the mailman, the person who delivers lunch, and to any other person entering the facility, all of whom are being recorded and replayed without their consent. I was in the facility back in early 2006 to meet with a client, and thereafter I was advised by both staff and parents of students in the facility that my conversations were recorded without my consent. In addition, I have spoken with others who have been in the facility without consenting to their conversations being recorded.

 The criminality described herein is made worse by an examination of the release signed by the parents of students attending this center. I am enclosing herewith a copy of the applicable portion of the release which is the same release signed from 2003 to the present, the section enumerated as “H. Filming/Photographs.” The fact that audio taping and recordings are made during therapy sessions is expressed, but in the paragraph consenting to same, the audio portion is specifically deleted, and the consent goes to video taping and/or photograph of the student. This omission specifically vitiates any consent by the parent of any student or parent from September 2003 to the present. As such, I believe there are thousands of victims of criminality in violation of the aforestated section, of which I am one. In addition, in speaking with March Network, the company that does the video surveillance at JRC, they have also advised me that all conversations that take place in said center are recorded.

 I ask that you immediately cause this criminality to cease and to prosecute the thousands of alleged criminal acts that appear to have occurred at this center and as a victim I hereby demand that you seek both monetary and criminal sanctions against those for acting in concert to commit a violation of the aforesaid criminal statute.

 I am aware that you are currently investigating the JRC and that a grand jury has been convened to investigate criminal acts. It might save the taxpayers of Massachusetts time and expense if you present evidence to a grand jury of the criminal acts revealed herein. I will be happy to testify as well will others I have spoken with concerning same.
 
Very truly yours,
 
LAW OFFICE OF KENNETH M. MOLLINS, P.C.

By: 
KENNETH M. MOLLINS
KMM/mc
cc: MA Governor Deval L. Patrick
NYS Attorney General, Andrew M. Cuomo

May 17th, 2008 Posted by Mike | Autism rights, Judge Rotenberg Center | 4 comments

Petition the UK Government for Autism

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).

• 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.

• 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. 

• 1 in 5 children with autism has been excluded from school, and 67% of these have been excluded more than once.

• 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,

• Nearly two thirds (63%) of adults with autism do not have enough support to meet their needs.

• 92% of parents are worried about their son or daughter’s future when they are no longer able to care for them.

• 61% of adults with autism rely on their family financially and 40% live with their parents.

• 60% of parents believed that a lack of support has led to higher support needs later on.

• 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

Judge Rotenberg Center - Close it Down!

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

Judge Rotenberg Center again

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

Piers Bolduc on You and Yours

 This letter was forwarded to the Asperger UK group today with permission of Cris Bolduc, mother of Piers Bolduc.  I urge anyone with access to BBC Radio 4 to listen to You and Yours tomorrow. Piers was misdiagnosed as mentally ill  and placed on powerful antipsychotic drugs. When he wounded a man while on medication he was sectioned and sent to Broadmoor, the top security prison for the criminally insane, which contains serial killers, mass murderers and sex offenders.  While there he was diagnosed with Asperger Syndrome. The Daily Telegraph campaigned for his release and in 2004 he was transferred to the Hayes Unit, the only secure unit specifically run for people with Aspergers Syndrome.

BBC RADIO 4 ‘YOU & YOURS’ this Thursday, 13th September 2007 at 12.04 mid-day.If all goes according to plan the programme we have recorded with the
BBC, on various occassions and locations since May, will be aired
THIS Thursday 13th September on RADIO 4 ‘YOU & YOURS’ at 12.04. Its
all about lack of care/units for adults with Asperger Syndrome and hi-
lites our son Piers’ tragic case.
Apologies in advance if its re-scheduled for sometime the following
week but that is the way it goes in the media! As I write it is still
on course for this Thursday. Although a great deal of recordings were
made, after editing it will be cut down to size so don’t blink or go
and make a coffee or you might miss it! I just feel that ‘every
little helps’ (to borrow a phrase!) not only for us and Piers but
other families struggling within the minefields of flawed placements
and the postal code lottery of accessing support and services.
You should be able to ‘listen again’ by putting: You & Yours listen
again, into your computer’s Google search a few days after it is
aired.
Please excuse the Round Robin but it is the quickest way to alert
everyone!
AllBestCris

Here is the article that celebrated his release from Broadmoor 3 years ago.

Asperger’s man is released from Broadmoor

By Daniel Foggo

Last Updated: 7:40pm BST 07/08/2004

September 12th, 2007 Posted by Mike | Autism rights, aspergers, mental health | 11 comments

Of mice and men and autistic fruit flies

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

Bad Science Abuses Autistics

If you have not read them already I urge you to visit Kristina Chew’s and Interverbal’s blogs where they write on an extraordinary technique employed by French psychiatrists to “treat” autism.

And if anybody is fluent in French I would be interested to know what they are saying about it on Forum Autisme My own limited grasp of the language suggests that, thankfully, a lot of French people are outraged by this “treatment” as well.

“A French treatment for autistic children with psychiatric problems which involves wrapping the patient in cold, wet sheets from head to foot is undergoing a clinical trial for the first time, which critics hope will see an end to the controversial practice.

The treatment, known as “packing”, involves wrapping a child in wet, refrigerated sheets in order to produce a feeling of bodily limitation and holding, before psychiatrically trained staff talk to the child about their feelings. Critics have called the procedure cruel, unproven and potentially dangerous, but its proponents say they have seen results.”

This is not quackery from some fringe movement like DAN! This is quackery from the heart of the French psychiatric establishment where Freudian-based psychoanalysis still holds sway. Before we get too smug it is as well to remember that the Tavistock Centre in the  UK is funded by the NHS to treat autism with psychoanalysis. And according to the Lancet

Delion recently gave a course on the technique at the Tavistock Clinic in London, which is part of the UK’s National Health Service. Maria Rhode, a psychotherapist at the clinic, points out that there are currently no effective treatments for autism, and that caring for such children presents a major, long-term challenge to health services.

Thank you to Michelle Dawson for this. Writing on her discussion list, The Misbehaviour of Behaviourists she also informs me that Professor Hobson is a member of the Tavistock Centre. As I understand it Hobson believes autism  results from a failure of interaction between child and caregiver that he regards as “the cradle of thought,” the essential foundation of what it means to be human. Here we are again. Autism is seen as a deficit that makes you less than human. So abuse of these children is OK in the name of science. I am sure scientists who experiment on animals have to follow stricter codes of ethical practise than those that apply to autistics and other victims of psychiatric research.

August 30th, 2007 Posted by Mike | Autism, Autism rights, Quackery in Autism, ethics, psychiatry | 10 comments

Autism, Genetics and Research Ethics

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