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Neurodiversity on show

9 Jul

I think I’ve talked before about how the concept of neurodiversity is – as well as being heavily personal – not necessarily something that most people know actually exists as a defined word. What I mean is, some people do things or hold views that are quite obviously neurodiverse but might never have heard of the word or concept.

Googe Alerts sent me a fantastic blog post this morning which was about a story I’d missed due to personal illness. It seems a young autistic girl had gone to a restaurant with her family and were ejected because the girl had a meltdown and another family refused to pay for their meal until the family of the autistic girl were removed.

Renee, the blog owner, makes it clear how repugnant the attitude of both the restaurant (and this intolerant person who demanded the girls family were ejected) were:

Now I will admit that I don’t know much about autism but I do know enough to realize that those that have it deserve the same respect and dignity as anyone else.

I would _love_ it, if that was everyones starting point. How nice would it be to have that attitude as the prevailing one when it comes to autism (or disability in general)?

Thats Neurodiversity right there folks.

Renee, goes on to detail some very intolerant responses to the reported story. They’re nothing that most of us who are either autistic or parents of autistic people have not heard in one shape or other before:

I don’t care if a child is autistic or what, the child needs behaviour modification. In this case, the child should have been removed from the restaurant by a parent until the child calmed down.

Thats someone who doesn’t get it. Thats someone whos probable priority as far as disability goes is not to respect the persons essential difference but to try and ignore it and make sure it does’t inconvenience them.

Thats what Neurodiversity challenges.

I’ll leave the last word to Renee, along with my thanks:

When we refuse to see people who are living with a form of disability whether it be physical, or mental as worthy of sharing our space we are constructing them as less than. It is in this disharmony of worth and value that ‘othering’ occurs. Our ability to project difference onto others leads to dire consequences for those that are unable to fit into a model of what society has accepted as “normal.” Despite the fact that we are individuals and no true norm exists, socially what we expect is conformity to preconceived ideas of what validates personhood.

Does 'autism' disrupt? And what does it disrupt?

8 Jul

Interesting post in the Seattle Times today. The title is _”Autism disrupts work and pay, article says”_ .

The article in question is a new study from Pediatrics:

<blockquote>An emerging body of work is showing the impact an autism diagnosis has on a family….<blockquote>….families with a child with ASD were 7 times more likely to report that child care problems affected employment than comparable families with typically developing children. These accommodations probably result in lower household income.</blockquote></blockquote>

Now, I’ll be upfront and say that I know those circumstances to be true. A combination of my own diagnosis (of manic depression) and my child’s diagnosis of severe autism with associated learning difficulties has made things very difficult at times. It is a simple truth that I cannot progress in my chosen career (I am a web developer) much past the stage I am at now because doing so means committing myself  (excuse the pun) to a schedule of work I cannot possibly meet, given our home circumstances. A lot of my professional friends and colleagues who are about my age and are of a similar skill level to me are now either owning their own companies or heading up teams of designers.

But…is it right to say that autism is the disrupting influence? Obviously In my own life there are my own personal medical issues but even so, I do not think it is right to say that it is _this_ which is the disruptive influence.

It is a simple truth that much more is expected of workers of this generation. People of my parents age never had the work pressures we do now. Employees are expected to work ‘above and beyond’ if they want to progress. To work hours beyond – way beyond – their contracted hours, to never be ill, to keep holidays to a time that is non disruptive to the employer. We in the West have started to live to work rather than working to live.

For a family with a special needs child (of any age) it is simply not realistic that they can meet this expectation. And so we _do_ need to expect a less financially comfortable life.

But what is the disrupting influence? Is it autism? Is it manic depression? Is it Down’s Syndrome? Is it Cerebral Palsy? Is it any other physical or mental difference?

Or is it the demands of a society that is putting less and less stock on the family and more on work?

Neurological diversity

28 May

It is a common tactic of some people who believe that autism should be cured at all costs to state that ‘the neurodiverse’ are a small minority of adults with Aspergers Syndrome, intent on preserving themselves at the expense of their ‘low functioning’ cousins.

Take a recent post from Harold Doherty railing against Andrew Solomon’s piece in New York Magazine:

The Alleged Autism Rights Movement isn’t much help for the severely autistic, the truly severely autistic….. like my son Conor who wondered (sic) across a busy main street oblivious to the dangers of traffic; or those like the 10 year old severely autistic boy in North Carolina who was struck by a train and killed Saturday half an hour after police received a report he was missing from his home. [Or] like the 50 year old autistic woman who could not communicate to tell the world she was being abused by staff in the residential care facility in which she lives in Long Island…

The sad fact is that, if Harold Doherty would allow himself to see it, no-one from ‘neurodiversity’ is suggesting that people like his son, the 10 year old boy he describes or the 50 year old woman he describes, should not be helped to the fullest possible extent. The trouble is, that Harold (and people who hold similar views) are so caught up in what they _think_ they never actually _see_ . The other fact is that the basic tenet of neurodiversity as _I_ understand the term is that people like Conor Doherty deserve respect. The whole ‘cure’ thing is a fairly trivial side issue. Respect is what comes first.

There is no cure for autism. Does this mean then, that we should not fight for the rights of autistic people of _all_ ages, abilities and expressions? That because they are not neurotypical they do not have rights? or deserve respect?

_That_ is what (to me and I think to very many people) neurodiversity is about. Take Alex Barton – the five year old voted out of his class. That is a _lack_ of respect. There is absolutely no justification for that teacher to behave in that way toward a five year old child. Neurodiversity says ‘this little autistic boy deserves to be treated as if he were the same as anyone else in terms of his right to belong’. I fear that some people who call themselves autism advocates think the problem is easily remedied by curing Alex Barton’s autism (hypothetically of course). I think that that entirely misses the point. People used to look for cures for homosexuality – that was wrong too. The _person who is autistic_ deserves as much of a chance to be judged for who they are with their own set of unique abilities, shortcomings and character as the person who is not.

Does this mean we should ‘leave the autistic child as he/she is’? Of course not! That is the largest of red herrings. If someone cannot communicate, you help them communicate. If someone cannot use the toilet, you help them to learn.

And then, when they have reached the upper limit of the potential for learning on each of these subjects, you accept that that is who they are. For some, that might mean they can now speak. For some it might mean they can barely use one Makaton sign. The _amount_ they have learnt is not the measure of how much respect they deserve. They deserve respect regardless. So we must all work to make the environment safer for young autistic children. We must all work harder to make autistic adults living arrangements safe. These are basic human rights.

It should also be noted that, far from being an autism related term, neurodiversity touches on a whole range of things. Of course, they’re not all called ‘neurodiversity’ but well….

Are voices a symptom of illness or a variety of human experience?

Research has shown that there are many people who hear voices, some of whom cope with their voices well without psychiatric intervention, it has also been found that there are many people who hear voices who can cope with their voices and regard them as a positive part of their lives. Neither is it the case that voices have always been regarded as a negative experience.

Throughout history and even today there are people who hear voices who find their voices inspirational and comforting. These are facts that on the face of it are hard to square with the extremely negative way that the experience is regarded by psychiatry. The researchers, practitioners and involved voice hearers believe it is mistaken to regard voice hearing as part of a psychopathic disease syndrome. Rather, they consider it to be more akin to a variation in human experience – if you like, a faculty or differentiation – something like homosexuality, that it is definitely not open to cure.

Thats taken from a page on Hearing Voices from the Mental Health Foundation. I would suggest that you go read that entire page. Like neurodiversity, some members of the hearing voices community acknowledge that their condition (or the condition of a loved one) can be disabling and distressing. However, they all realise that their can be a unique benefit and comfort in knowing who they are. They believe that who they are can be best expressed as a variation in human experience.

A little closer to home (for me anyway), there is something called Mad Pride which is a movement again neurodiversity in all but name. Its a loose conglomeration of self advocates who are (or have been) diagnosed with mental illness:

About 5.7 million Americans over 18 have bipolar disorder, which is classified as a mood disorder, according to the National Institute of Mental Health. Another 2.4 million have schizophrenia, which is considered a thought disorder. The small slice of this disparate population who have chosen to share their experiences with the public liken their efforts to those of the gay-rights and similar movements of a generation ago.

Just as gay-rights activists reclaimed the word queer as a badge of honor rather than a slur, these advocates proudly call themselves mad; they say their conditions do not preclude them from productive lives.

The people in all these movements are autistic, manic depressives, schizophrenics, tourettes and many more. None of us deny the bad things that being the way we are can bring. But we do not believe that the fact that we are the way we are means that we are second-class or fodder for nothing more than quack therapies and misplaced pity.

All these peoples – and many more – are the neurologically diverse. The Neurodiverse. Belonging to neither nation, nor politics but simply belonging to the simple idea that everyone is _not_ equal but everyone can advocate best for themselves if supported and respected:

“Broken down it means ‘speaking for yourself’, ‘communicating in other ways’, but it’s personal. For me it means that I can speak for myself. It means I’ve got a voice and even without a voice I can communicate in other ways. It means yes and no- most important- ‘No, I don’t want tea, I want coffee, I don’t want sugar’- all the things we take for granted. It means people must listen to me, I can take a risk, I can have a relationship, that can be hard. I can think for myself, I can go to the shop with support and if I need help, people can help me….

Jackie Downer, Down’s Syndrome Self Advocate.

‘Neurodiversity’ in New York Magazine

26 May

The journalist and author Andrew Solomon (author of the truly excellent and personally recommended Noonday Demon) has written a long piece for New York Magazine entitled The New Wave of Autism Rights Activists in which he paints us a picture of the heavily fractured tripod of autism activism.

Its far, far too long for me to summarise but I will try and give a very brief overview of how Solomon sees these three groups:

There are in reality three sides in this debate: those who believe autism is caused by environmental toxins (especially vaccines) and should be cured by addressing those pollutants; those who believe it is genetic and should be addressed through the genome; and the neurodiverse, who believe that it is genetic and should be left alone. These camps are blatantly hostile to one another. Gerald Fischbach, the scientific director of the Simons Foundation, one of the largest private funders of autism research, says, “I’ve never seen an advocacy community as intense and demanding. The mercuries get livid when people talk about genetics. The geneticists get furious when people talk about environmental toxins. And these activists get angry at both.”

That is a fairly accurate picture although not without it faults (ND’s believing autism should be ‘left alone’….not sure about that – and Solomon does qualify that statement later on)

I don’t really want to talk that much about Solomon’s piece. Its very, very good overall in my opinion. What I _do_ want to talk about is my reaction to it and how my slightly changed view of what ‘neurodiversity’ means to me is.

Ever since I had a large public disagreement with certain people last year about how I and other parents on the Autism Hub allegedly advocated (this disagreement led me to ‘outing’ myself as a manic depressive, handing over ownership and control of the Autism Hub and taking time away from blogging for a week or two), I have been thinking off and on about ‘neurodiversity’ as a practical construct.

I will come clean and say that Andrew contacted me for a statement about what I thought about neurodiversity as someone both neurologically different and also parent to someone neurologically different. That I didn’t make it into the final piece is testament to his skills as a journalist and my own growing ambivalence regarding neurodiversity. I started off by saying:

I felt that I had a good handle on the meaning of neurodiversity – to me it was simple: the diversity of neurology or, to lengthen that out to a truly epic state of pedantry, the many differing states of being that could be neurologically encompassed.

and I still do think that. I also said:

…what neurodiversity was, was a concept that could be embraced by people who valued difference and respected those who were different. It didn’t matter to me that those who embraced the concept were parents or professionals or autistic people or blind people or bipolar people or any mixture of the above. The important thing was that here was a group of people who were saying that being different wasn’t bad. That it (whatever ‘it’ happened to be for you) was a state of being worthy of respect in its own right. It is vital to me that my child grows up to think of xyrself as a person who is entitled to respect.

Beyond that, I am unsure what – if any – of the other things associated with neurodiversity apply to me. I am not ‘anti-cure’. I agree with Alex Plank who states in the article:

Alex Plank, who founded the Wrong Planet Website, which has over 19,000 members, says, “Since no cure exists, I don’t have to be opposed or for it. The thing now is to deal with the autistic people who are already on this planet.

What I want to do is raise my child to a point where xe can advocate for xyrself. If there was a cure invented tomorrow I would want xyr to able to ask the question xyrself: ‘Do I want this?’. This is because, as a parent, just as it is not my right to make xyr not autistic, it is neither my right to keep xyr autistic against xyr own wishes. I am a parent first and advocate second. Let me go even further. If a cure was discovered tomorrow I would not advocate against it. I would try and debate its use as something that should be used with extreme caution but I would not advocate against it point blank.

I come from a viewpoint that views a cure for autism as something that should not be necessary, not as something that should not exist.

What I mean by that is that I do not think it should be _necessary_ for someone who was autistic to be made not autistic in order to enjoy their life. I see plenty of autistic people clearly enjoying their lives and who they are. I want to see respect, tolerance and caring to come _first_ – not only after someone has been ‘cured’. This is (to me) at the root of the recent issue involving Alex Barton. One argument is that because Alex is autistic this is only to be expected. I disagree with that totally. I think that Alex was/is worthy of respect whatever his neurology. Its the same reason I don’t really like the heavy NT bashing that goes on at some ASD forums – two wrongs never make a right.

I also come from a belief that science is important. I therefore recognise that we cannot pick and choose what science we like and what we don’t. Science is either valid or it isn’t. So, when a scientist writes a _good_ paper that states MMR doesn’t cause autism I have to (by definition of science) agree with it. Likewise however, if a scientist writes a _good_ paper that states that Facilitated Communication is not valid, I have to accept that also. I do think that some neurodiversity activists are guilty of picking and choosing what science they like and saying its good and vilifying science that they don’t agree with. Which is fine if the criticism is valid. But not if it isn’t.

If a scientist works on a cure for autism should he be stopped? No way. To me, that’s pointless. If science is interested in a subject they’ll do it. Not always in the best interests of humanity I grant you but all the same – the debate about what to do with the results of said science are more practical than simply trying to stop it.

So, I’m not sure if I am ‘ND’ anymore. Or maybe I’ve just re-interpreted what I think being ‘ND’ means for myself. I don’t know.

Edit: Missed a bit

The closing of Andrew Solomon’s piece is a bit of a dichotomy.

Severe autism is a ghastly affliction that should be cured

I’m afraid that I entirely disagree with Andrew there. They key word is ‘should’. To me, the sentence would be more representative of my own personal definition of ‘nd’ if it read:

Is it important to cure ‘severe’ autism or look more carefully at how the rest of society operates around ‘severely’ autistic people?

.

However, it seems as though Andrew was reading my mind when he wrote:

It is unproductive to rail against the incurable; if you can learn to love it, that’s your best chance of happiness. For some people, the love is self-evident; for others, it is acquired through struggle; others cannot do more than pretend to it. Though neurodiversity activists can get in the way of science and sometimes wrap themselves up in self-important, specious arguments, they also light the way to such love—a model of social acceptance and self-acceptance that has the capacity to redeem whole lives.

Autism and Mental Illness

10 May

So, the family have been away for four days on holiday – our first ever holiday! A very, very good time was had by all 🙂

But in the meantime it seems like the Autism News Juggernaut hasn’t even slightly slowed. I came back to a deluge of emails on subjects touching on autism but one really caught my eye.

This is the story about autism being linked to mental illness:

Parents of autistic children are twice as likely to have had psychiatric illness, researchers have discovered…A child’s risk of autism was 70% greater if one parent was diagnosed with a mental illness, and twice as high as average if both parents had psychiatric disorders, according to a report in the Pediatrics journal. The finding suggests autism and psychiatric problems may sometimes have a common cause and genetic link.

I’m trying to get ahold of this paper to read for myself but its totally unsurprising to me that this should be the case. As some of you know I have manic depression (bipolar as its known in the US) for which I have been receiving treatment for approaching 30 years. I have long suspected that there is an overreaching link between many flavours of mental difference – a hypothesis, born out in the scientific work of David Porteous who has been involved in pioneering science regarding mental illness and DISC 1 mutations. Long term readers of this blog may know that DISC 1 has a high association with autism too.

Indeed, last year, David Porteous gave a fascinating talk at last years MDF Conference in which he talked about the DISC1 connection to manic depression and included ASD amongst the constellation of ‘mental disorders’ that have some kind of interrelationship.

So, this news was no surprise to me at all. Yet to some others it seemed as if it was a slap in the face. A comment from a reader who saw this item reported at CBC said:

So what is being implied here? That mental illness in parents is an indicator /cause of autism in off-spring, or autism in children causes mental illness for their parents? On behalf of parents of autistic children I feel offended by this type of garbage research…

Which is a frankly bizarre way to look at this study. The study itself seems to be saying only what is presented in its abstract.:

This large population study supports the potential for familial aggregation of psychiatric conditions that may provide leads for future investigations of heritable forms of autism.

Its step one. Nothing about _cause_ has been discussed as far as I can tell from reading the abstract. Does that make it ‘garbage research’? Hardly.

Statement on autism, vaccines and mitochondrial disease

22 Mar

The following was posted on the blog of the Mitochondrial Disease Action Committee yesterday.

The recent headlines concerning the potential links between autism, mitochondrial diseases, and vaccinations are evidence of the need for better understanding about mitochondrial disease. It is conservatively estimated that one in 4000 individuals are affected by mitochondrial disease, although specialists agree that the disease is under-recognized in the general population. The presentations and severity of symptoms of mitochondrial disorders clinically vary and affect both adults and children.

Vaccinations are critical in protecting the health of our children. All children, even those with suspected or known mitochondrial diseases, should receive the recommended vaccinations. The risks of these communicable illnesses outweigh the risk of vaccine-related reactions. Any causal relationship of thimerisol to incidence of autism has been disproven by observing the incidence of autism before and after eliminating this form of mercury from the vaccines. MitoAction encourages parents to talk to their pediatrician about these concerns.

David Holtzman, MD, PhD, a Pediatric Neurologist at Massachusetts General Hospital in Boston, MA, notes, “Mitochondrial Disease may present with the clinical features of Autism Spectrum Disorders (ASD). Several recent studies have documented biochemical evidence of abnormal mitochondrial functions in at least 30% of children with ASD.”

Awareness and attention to mitochondrial disorders will bring greater understanding of the impact of environmental and physiologic stressors on both autism and mitochondrial disease. Further research may explain how autism can be an expression of mitochondrial diseases and could be prevented.

Concerns about charity Life’s 4 Living: an autistic child told that his “negative energy smelled so bad that the doors of the room had to be opened”

13 Mar

The charity Life’s 4 Living offers treatments for a range of disabilities and illnesses – including autism. They focus on ‘energy healing’, and offer residential treatment outside of Britain. Life’s 4 Living have – until recently – had blogs on their site. These were removed after HolfordWatch and Quackometer raised some concerns about the charity, but are still available in google cache. The blogs certainly raise some concerns themselves.

The blog about an autistic boy’s treatment (we’ll anonymise him as Y here, though the blog does give a first name) is especially upsetting. It is this that we’ll discuss in this post; you can access the google cache here. Under ‘Day 1’, the mother posts that:

My understanding of illness and disability is quite different to Life’s 4 Living – I am proud of Y and what he achieves – I see him as different but not sick. At the end of the first day I wondered if I had made a big mistake in coming – I had come a long way to be told my beautiful child’s negative energy smelled so bad that the doors of the room had to be opened and for other children to laugh at him when all he wanted to do was play with them.

Continue reading →

Autistic Voices Not Saying What We Want

21 Feb

Yesterday I linked to a story about Carly Fleischmann, a 13 year old autistic girl who, up until recently has been uncommunicative.

All of a sudden these words started to pour out of her, and it was an exciting moment because we didn’t realize she had all these words,” said speech pathologist Barbara Nash. “It was one of those moments in my career that I’ll never forget.”

I’ve caught some email flak from a few people in the neurodiversity community for linking to this story. Mainly because of the closing words from Fleischmann:

If I could tell people one thing about autism it would be that I don’t want to be this way….”

I can understand how people would be upset with Fleischmann’s opinion. Many autistic people have spent a long time trying to raise awareness of their lives as something that they are happy to have and happy to be autistic in. I consider it vital that autistic people know that too.

But.

These _are_ Fleischmann’s thoughts and opinions. We should not and cannot discount, ignore or attack them. We cannot pretend that they are not equally as valid as any other autistic persons just because we don’t like their message. To say that they are not valid is to take the exact same stance as those who claim autistic people cannot know their own minds. Fleischmann knows her own mind and – right now – she doesn’t like being autistic and wishes she wasn’t.

Maybe with age will come a new self-acceptance. Most teens are full of self doubt and lack positive self imagery and I doubt Fleischmann is much different than most teens. But we also have to consider that she _won’t_ change her mind and that she will join with other autistic self advocates who may wish for a cure. We have to ask ourselves difficult questions about the nature of our advocacy now. I will be quite open and say that if my daughter ever wishes for a cure then I will try and help her get it. I will disagree with her decision and feel sad that she has made that choice – *but it is her choice* . Just as it is Fleischmann’s choice to not be happy with the fact she is autistic.

This is also why I am ambivalent about a cure. Whilst I do not think that a cure is a necessary thing for autistic people, I do believe that an individual has the right to do with their own bodies pretty much whatever they want. We have a society where men can become women and vice versa and no one aside from prigs and bigots object to this. This strikes me as the same. the issue with cure for me is that it must be very, very responsibly initiated. The issue of whether there will ever _be_ a cure is out of all of our hands. If a scientist wants to research a cure then they will.

We should – in my opinion – try and teach that there is nothing wrong with being autistic. Not that one cannot have a choice to not be autistic.

Dore pwned in medical journal: expensive and unproven ‘cure’

29 Sep

The Dore programme is an interesting ‘cure’ for all kinds of things: as Dorothy Bishop puts it, “Dore Achievement Centres are springing up world-wide with a mission to cure cerebellar developmental delay, thought to be the cause of dyslexia, attention-deficit hyperactivity disorder, dyspraxia and Asperger’s syndrome. Remarkable success is claimed for an exercise-based treatment that is designed to accelerate cerebellar development.” Sound great, doesn’t it. Except, as Bishop shows in a new journal article, this is not supported by good evidence and it is therefore the case that “the claims made for this expensive treatment are misleading”. While academic journals are normally pretty restrained, this is about as close as I’ve seen to a thoroughgoing fisking in a journal article: Dore, and their research, are really pwned here. Given that – according to Ben Goldacre in the Guardian – a course of Dore treatment costs around £1,700 (and takes a load of time) I’d want much better evidence of efficacy before splashing out.

Dore is certainly well-promoted. Google “Asperger’s Syndrome” and it brings up an advert for Dore’s “Proven Long Term Drug-Free Solution Relieving the Symptoms of Aspergers”. Google “dyspraxia” and an advert informs one about Dore offering a “Proven Long Term Drug-Free Solution Relieving the Symptoms of Dyspraxia”. Google “dyslexia” and an advert promotes Dore as a “Proven Drug-Free, Exercise Based Dyslexia Remedy”. As a slick Dore promotional DVD puts it: “Now Dore Centres are able to offer real hope to those in despair” due to suffering from ‘learning disorders’. This includes Asperger’s Syndrome, which Dore’s UK site describes as “a problem associated with poor social behaviour.” Dore is apparently “suitable for those with high functioning Asperger’s Syndrome and Autism” (are any alternative treatments nowadays not marketed as suitable for people on the autistic spectrum?).

This marketing might make Dore seem appealing. Bishop notes that, “Although most of the promotion of the treatment is based on personal testimonials, these are backed up by research. Dore pointed to a study showing that treatment led to a nearly fivefold improvement in comprehension, a threefold improvement in reading age, and a 17-fold improvement in writing.” Sounds good, right? But the quality of the research was pretty dismal. Among other problems, while the research did include a control group

there were no data corresponding to a time when the treatment group had had intervention and the control group had not – because the control group had embarked on treatment at the end of the first phase. Accordingly, the authors presented the data only from the treated group.

‘Oops’, is all I can say…Bishop puts it more eloquently, making clear that “The publication of two papers in peer-reviewed scientific journal (Dyslexia) has been presented as giving further credibility to the treatment. However, the research community in this area has been dismayed that work of such poor standard has been published.” I wonder how the researchers justified this poor control to Dyslexia – maybe the good old excuse that ‘the dog ate my control group’?

This might sound bad for Dore, but that’s not the half of it – Bishop also takes apart Dore’s posited mechanism of action:

The gaping hole in the rationale for the Dore Programme is a lack of evidence that training on motor-coordination can have any influence on higher-level skills mediated by the cerebellum. If training eye–hand co-ordination, motor skill and balance caused generalised cerebellar development, then one should find a low rate of dyslexia and ADHD in children who are good at skateboarding, gymnastics or juggling. Yet several of the celebrity endorsements of the Dore programme come from professional sports people.

So, aside from lacking a plausible mechanism of action, and lacking good evidence of efficacy, Dore seems like a great idea. If that leaves anyone rushing to get out their cheque book, Bishop kicks the dead horse a few more times. It’s therefore also worth quoting Bishop’s key points about the Dore treatment:

1 The treatment offered by Dore Achievement Centres is being promoted as a “drug free” alternative to conventional treatment for ADHD, and as a ‘miracle cure’ for dyslexia. It is presented as having a neurological rationale and gains credibility by appearing to be medical treatment.
2 The publication of two papers in peer-reviewed scientific journal (Dyslexia) has been presented as giving further credibility to the treatment. However, the research community in this area has been dismayed that work of such poor standard has been published.
3 The research purporting to show efficacy of the treatment does not show sustained gains in literacy scores in treated vs. control children. Furthermore, the intervention has not been evaluated on the clinical groups for which it is recommended.

Ouch. If only more articles in science journals were like this – clear, well-written, and brutal in a rather entertaining way – they’d make much better weekend reading…

Sick of the Dehumanising

28 Sep

I am utterly sick of Jenny McCarthy and the TACA urges to autism Yahoo groups members to bombard radio/TV stations where she is appearing with pictures of kids, telling them to tell the TV stations there kids are ‘recovered’ whether they are or not:

More help is needed to show the cynical world children with autism ARE getting better. They ARE recovering!. If you have a recovered
child or a child that is near recovered, has benefited HUGELY from biomedical intervention please read and consider the following.

WE NEED RECOVERED KIDS – families need to send in their stories and pictures of their recovered child or children. What is needed – Before and After pictures for kids who recovered from autism. (IT IS IMPORTANT TO SAY: I give permission for these photographs to be on air with Larry King 9/26/07 – include parents name & phone numbers with the childs first name only to appear.)

See? Doesn’t matter if your child actually _is_ recovered – or even recover _ing_ – just being a biomed user is enough to ‘prove’ recovery according to Julia Berle. The media spin is sickening. The attempt to utterly mislead people is sickening.

I am also utterly sick of hearing SafeMinds, the NAA, A-Champ and all those other soccer mom, white, upper-middle class me-me’s having the gall to say that a study that makes it clear in its abstract that it has nothing to do with autism is misleading the public about autism. This coming from groups who have incited violence against honest scientists and who have blatantly lied about these same scientists affiliations – with no apology or retraction – and who have paid journalists to write nonsensical, non-scientific propaganda on their behalf.

Further, I am sick of the Sally (I’m sorry, I can’t bring myself to carry on typing that ‘look at me’ version of her first name) Bernard’s of this world who – even when invited to help design a study and who are happy to do so, don’t possess the moral fibre to stick with the study they helped design because it didn’t produce the results they wanted. And not only that, have the temerity to complain about the design of the self same study – _which they helped design without a word of complaint until it produced results opposite to her beliefs_.

Lastly, I am utterly, totally sick of the casual dehumanising of my daughter and people like her – autistic people – who are now happily being described by Jenny McCarthy’s pet quack as soulless.

Well, screw this, I’ve utterly had it. What I want to do is give Kartzinel a big loud and clear blast. And I need your help to do it. I also need the help of your friends and your friends friends.

I want to produce a video to post to YouTube which will be an utter refutation of such unbelievable crassness. I want to collect a picture of every autistic child who’s parent rejects the description Kartzinel gave for autistic children. They do not need to be named if you don’t wish to do so. They will not be identified. They will just be present. Please send me your photos to kevleitch@gmail.com. Please pass this request on to your friends. Please make sure this arsehole understands that referring to our children in this way is not acceptable.

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