2 Apr 2014

Action not Awareness for Autism

It's World Autism Awareness Day and autism is all over the papers and radio. Some of the stories are great such as this by Fiona O'Leary, an Irish self-advocate explaining why she opposes the Light it Up Blue campaign and seeking an end to negative rhetoric:
"Any research that will bring positive benefits to people on the autistic spectrum is welcome. However, the propaganda used by Autism Speaks is instilling fear and hatred about a condition that is struggling to find acceptance in society."
Some stories attempt to tug at the heartstrings such as the story of a 9 year old girl who wrote in school about her dearest wish- that her 4 year old brother be cured of his autism. In her letter she describes her brother's sensory issues as well as the efforts those who care for him are making at improving his communication skills using Grace App. The little girl comes across as very insightful and caring. It seems to me that she uses the words "cured" and "healed" as shorthand for educated and parented so as to help him to have the best life possible. It's just a shame that the media have jumped on her story as though autistic kids' lives are a tragedy and the only way to help them is to seek a cure.

According to a local autism charity, every council in Northern Ireland is Lighting Up Blue as is Channel 4 News (belying their reputation for thorough research and a good understanding of the background to the stories they report). Have we lost the battle to separate autism activism from the corporate blue of the despicable Autism Speaks?

Then last night BBC aired Horizon, "Living with Autism" presented by Uta Frith, which gave more insights into how autism researchers interpret their findings than on how autistic people perform in their Sally Anne and dancing triangle tests. In every instance the autistic way was coded as impaired, less-than. The language of the programme was inherently pathologising. It worked best when autistic people themselves had the chance to talk- though even then their words and actions were put into context by Uta as to how they differ from "ordinary" people. I liked it a lot less than I expected to.

However a nice thing happened as the show started, my son, my darling Ryan (aka Duncan) came in to say goodnight. I told him I was watching a programme about autism and he said, "Oh autism! I love autism. I'm the autistic boy!"

Ryan with his beloved Granda. 

And that's what matters most to me. My child is autistic. He's here to stay and I need to work to make the world a safer and better place for people like him. That's why I want ACTION not bloody awareness for autism. Yesterday on twitter someone called for a cure for autism as he has seen autistic people locked up for decades in hospital, wiped out on anti-psychotic meds and unable to care for themselves. This doesn't motivate me to find a cure- but to act on behalf of the people who are being treated inhumanely. These people need freedom, they need action to help them communicate better, people who listen to them, and support to experience more of life. Autistic people need better education that doesn't stop when they turn 18 or 19. They need decent paid jobs, places to live with only as much interference from service providers as they need. They need the right benefits to get by, opportunities to engage in sports and hobbies. My boy will be moving into the adult care system in a few years. I'm just starting to look into what options exist and it's heart sinking. I'll do what I can to shake the system and every time we make progress, then call on the media to aware the heck out of whatever has been achieved.
This is what I will battle for and I'm not going to be fighting alone.




28 Mar 2014

Please Don't Light up Blue for Autism

You mean well. I know you hope that by persuading your local council to bathe your town or city's most significant building or monument in blue light, that you are doing a good thing. You have bought into the notion that increasing "awareness of autism" will help your autistic children. But do you know where the notion of "light it up blue" originated? Are you aware how people who are themselves autistic feel about this particular campaign?


April 2nd has been marked as World Autism Awareness Day since the late 80's and in 2007 it was adopted by the United Nations. Light it up blue came along later; in 2010 it was set up by Autism Speaks, a huge and disreputable USA-based organisation. Autism Speaks seeks a world without autism, it does not support autistic people, but bullies and silences them. Autism Speaks regularly makes outrageously hurtful and damaging statements. Many in the autistic community call for a boycott of the organisation.



Blue is the corporate colour of Autism Speaks, that's it. Blue is not associated with autism for any other reason. When you lobby to light up blue or you "wear blue for autism" you are demonstrating your support of Autism Speaks the organisation, not of autistic people or their needs.

Autistic people and their allies are trying to get the word out about how damaging the light it up blue campaign is.

I ask that you take their views seriously and stop lighting up blue.


24 Mar 2014

Autism Biomed Bullshit Booming in Ireland

I didn't expect that the promoters of uncontrolled and unethical experimentation on autistic children would be allowed to sell their services on RTE TV. Thanks to Suzy (who alerted me to all this stuff) I was able to catch the Morning Edition show of 21 March (segment starts at 57 minutes) when USA-based Great Plains Laboratory boss William Shaw was interviewed as an "expert in biomedical interventions" along with Karen O'Connor, boss of home-grown organisation The Child Development Centre. Shaw wasn't challenged despite claiming that they had "reversed" autism in many children with their treatments. The RTE reporter provided no balance or probing of these claims- just bovine acceptance. William Shaw's lab is one of those places where quacks send samples of urine and blood to be tested for the terrifying toxins that proper doctors and real hospitals can't find because they aren't using dodgy testing systems. The Child Development Centre provides some proper therapies like speech and language therapy and occupational therapy as well as rubbish like biomedical and craniosacral therapy and its shiny website contains a page full of jolly testimonials. There's no price list but I bet it all comes with a high price tag. 

The TV show, as always with these things, showed a mum telling the miraculous story of her son's escape from the clutches of autism (tendencies) via music, biomedical therapy and craniosacral therapy. "Two years later," claims the reporter, "he's really reaching his true potential." Two years is a long time, and autism is developmental delay not developmental stasis. The Child Development Centre is being credited with all that slow, natural progress the child made in this lovely infomercial courtesy of RTE. 


The RTE-plugged conference- Quacktastic.
Today FM also promoted the Child Development Centre and their conference in an interview as bland as that on RTE. A mother describes how her perfect son was all of a sudden diagnosed with autism and "turned to a stone" but then they went to a herbalist and the Child Development Centre and were able to "bring him back" and now "he's not lost any more." He never was lost.

Hey Irish media, how about when you have a story on autism or some other condition, you seek out a person who has that condition. If you want an expert on autism, talk to an autistic.

Neither was I expecting to read a circa 2007 article on quack autism cures in the Irish Times a few days ago. Dear Maud this one is truly terrible. It (again) features the mother of an autistic kid who claims that following a particular regime rid her child of teh autisms. This time it's the services of Natasha Campbell McBride's and her GAPS diet that are being promoted and Geoff has written a wonderful post detailing just a few of her outrageous claims and dubious and potentially dangerous practices.

This article follows the tried and tested Autism ArticleTM template as described below.

Don't stray from the template- sure who wants to know about the reality of life with autism!




It really astonishes me just how closely Adrienne Murphy sticks to the template I wrote in 2008!

But it's 2014 and we should not have to keep having these discussions. I'm tired of dismantling specious claims by unscrupulous hacks. Autism is nothing like that described by Murphy in the Irish Times. Autism is a genetically-based human neurological variant and NOT "the result of a complex intermeshing of degenerative diseases and comorbidities, largely created and exacerbated by environmental factors."

Autistic children are NOT "fully recovering" after biomedical treatment. Autism is not a disease though some people may have medical conditions as well as autism for which they must obviously receive proper medical treatment.

Murphy describes herself as "a lay expert" in autism yet fails to understand the most basic explanation for rising diagnoses.

Yet there's a final insult in the closing lines of the article: "Adrienne Murphy will be joking about autism as one of the performers in Stand Up For Humanity! Activists do Stand -Up Comedy for Charity."
After the disablism and inaccuracies of her article, I think it's for the best that I'm too far away from Dublin tonight to attend.

18 Nov 2013

Is This Autism?

[Warning-  in this post, written in support of the This is Autism flash blog, I've quoted some of the dehumanising language used by Suzanne Wright.]



I don't get to say what autism is. I'm not autistic though my thirteen year old son is. In learning how to parent him, I've met other autistic people, read their words and I've listened. I'm qualified to say what my son is like, how his awesomeness and autism intersect. I'm also authorised to say that the wretched "Call for action" edict by Suzanne Wright, co-founder of enormously wealthy and powerful, USA organisation Autism Speaks, is revolting, damaging and does not represent my son or my family. Nor does it tally with anything I have learned about autism in the past 11 years.

Autism Speaks Co-founder Suzanne Wright after some fantastical Photoshopping  

"This is autism" Suzanne claims three times in a piece filled with falsehoods, bigotry, hate and a total negation of the existence of autistic adults. She does not represent my family when she says that we are "not living" but are merely "existing". Such hubris! She honestly thinks she can speak for all of us. She invents statistics; "2.3 million [US] dollars to care for one person with autism for their lifetime" and "Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help."

I'm offended and contemptuous. My son's existence isn't adding to a crisis, he's no national emergency. He's a disabled young person with his own challenges and talents and it's my job to raise him. Autism is part of the naturally occurring diversity of human experience. Unlike Autism Speaks, I don't want a world in which we "make autism a word that we only see in the history books."

Sure I am often worn out and I worry about and struggle to understand my children- all three of them, autistic and non-autistic, just as most parents do. Autism brings more challenges to the mix and I have had to battle with service providers and education departments to have my son's needs met. I've weathered the stares and comments of judgemental strangers. What hurts and exasperates me most of all though, is dealing with the perpetual dehumanising of people like my autistic son. He's a great kid- if you are ever lucky enough to meet him you'd see that. He doesn't deserve to have his very humanity constantly called into question.

Living, not just existing

I will do all in my power to prevent Autism Speaks from gaining a foothold in Ireland and the UK. I request that anyone who has ever contributed to that organisation now withdraw their support and that academic departments think very hard about whether to accept funding from them. An organisation that spreads this rhetoric of fear and hate ought to be shunned.

20 Aug 2013

This is My Child

This Is My Child is an awareness-raising campaign run by Mumsnet.

This is my millennium baby. He didn't develop along quite the same path as his older sister and most of his peers and was diagnosed with autism when he was two years old.

Ryan aged 2
As a toddler he didn't speak but he communicated in other ways. Over time and with lots of help and teaching optimised to his way of learning he learnt to communicate more effectively.

Ryan aged 4 in a play centre- he was speaking in 2 to 3 word sentences then.

Over the years, just about every single time we have been out and about together, people have taken a second look at him. Often it's because of what he's wearing. Ryan loves videos and stories. Most of his language comes from chopping up film scripts and slotting the pieces into place appropriately. He makes films of his own, He likes to dress up as his favourite characters. He's eccentric and catches eyes as he strides along with a red blanket wrapped around his shoulders.

Ryan aged 6, Robin Hood/Cowboy mash-up

Ryan aged 12 as Curtis the evil raccoon-sheep from Minecraft
People look because Ryan can be loud. He comes out with unexpected expressions. Sometimes he's angry and lashes out though it's very rarely physical and he holds back from hurting as best he can. Often he talks to himself and he moves in non-typical ways. He often livens up walking with a perfectly executed pirouette.


Most people look instinctively then go on about their day when they see that it's just a boy out living his life as he's entitled to. Rarely do people progress from simple curiosity to outright rudeness and the stares of strangers don't affect me. Over the years I've developed a force field that surrounds me and my boy and the people who try to catch my eye so they can register their disapproval are rarely successful. Some still try but I notice it much less than when he was younger. His disability is more apparent as he grows. He's not like typically developing teenagers.

Most people are lovely- they smile at Ryan, they show us kindness when we need it. Ryan abounds with kindness and concern for others. He deserves to have his place in the world, to be accepted and to have the few accommodations he requires to participate. He's my child and I wouldn't want him to be anything other than the creative, funny, loving and perfectly autistic boy he is.

27 Jun 2013

Double Helix Water Autism Quackery

There's a new quackery promoter in town and he sent me the following email a few days ago. My thoughts are in red:

"Dear Sharon, 
I have just been reading your blog I don't think so and wanted to introduce you to a new approach to working with Autism. Rather than send you a long email.
Don't leave me hanging, rather than send a long email you'll...?

I just wanted to say that I am new to the Autism community here in the UK allow me to represent the autism community in the UK and Ireland and say hello and welcome as I am working to try and connect with parents of Autistic children but not autistic adults? with a view to subsidising a trail oh here it comes of a water product that is having very positive outcomes with Autistic children. Wowee positive outcomes! That sounds like a good if rather vague achievement. And you're subsidising a trial? Does that mean people are actually being asked to pay to take part in a research project? Ethics fail.
I have attached a couple of pdf's for you to look at and look forward to hearing back from you when you have a moment.
 
Best Regards,
Jeremy Jones
Double Helix Water (UK) Limited
Company Number 8482978
Distributors of Double Helix Water for United Kingdom and Ireland"
(Double Helix Water-it's like DNA and water combined and doesn't that sound just awesome!)
Jeremy's email included a link to a science-y video all about the mysteries of water. Also attached was a slick marketing PDF which is what really piqued my ire. I can't find a link (will forward PDF to anyone interested) I uploaded it to Google Drive and here's the opening page:
 
Autism- ripping jeans and upsetting little kids since 1943
 
 
They're selling hope, the most marketable of all products. But they need first of all to frighten potential customers who, if they knew that autism is part of the naturally occurring diversity of human experience, wouldn't be hoodwinked by their pitch.
 
This document which I'm calling A New Hope goes on to proclaim that we're in the midst of a Global Epidemic, autism is a "medical and social issue that we can no longer afford to ignore. It has to be dealt with, and real solutions need to be
found." 
 
This is followed up with an unreferenced "study" concluding that biomedical treatments are 81% safer and 60% more effective at "producing improvement" than drug treatments for autism, all based on parent consultations and the Autism Research Institute. 
 
So much fail. To start:
  1. who was "improved" and how?
  2. drugs don't count as "biomedical treatments"?!
  3. how was relative safety defined and measured
  4. parental opinion is hardly objective.
  5. the Autism Research Institute is a key player in the axis of autism-vaccine nonsense, it is a disreputable organisation promoting pseudo-scientific and potentially dangerous treatments for autism.
  6. what exactly are the drug treatments referred to?
On to page 11 and more misinformation:
"Genetics Does Not Explain Autism
A Stanford University study of twins published last year found that genetics accounts for just 38 percent of the risk."
That's not what the study found- its authors say that the role of environmental factors has been underestimated. However an alternative analysis of their data concludes that it supports the findings of all previous twin studies and provides further evidence of the heritability of autism.

There is certainly no evidence for A New Hope's next claim, "The Majority Of Autism Is Caused By Environmental Factors."
After the usual autism-snake-oil pitch about gastrointestinal disorders and chemicals and toxins (oh my!) we're shown the solution- our saviour is so highly qualified the page is crammed with accolades:

Our hero

And this genius discovered something remarkable- stable water clusters. I think he means ice crystals. But anyway these, A New Hope claims, "have a remarkable effect on the Human Immune system."

What is it with quacks and non-standard word capitalisation?

On page 21 we learn that they use "Completely Safe thermal imaging" not harmful x-rays to examine the patient. But why would anyone even suggest using x-rays to discover anything about autism?!

Pink bad green good

So the magic water is administered and as the "startling" thermal image above of an autistic 7 year old shows, after only 20 minutes the child's temperature has dropped. Perhaps the heating was broken.

A New Hope ends with a pair of testimonials about how the magic water made a little boy and autistic teens smarter and healthier.

OK I'm convinced- where can I sign up to get the boy known as Duncan a supply of water clusters to make him more green and less autistic? Thankfully there's a FAQ on the website telling all. There's also the small detail of cost, they ask "participants to contribute $800 for this research project for three months". And they have the cheek to ask people to fork out that kind of money for water with a disclaimer that comprehensively states that participants can and should expect nothing for their money: "Nothing in this material is presented here as an effort to offer or render medical advice or opinions or otherwise engage in any type of medical practice."

This is a ridiculous con but some parents of autistic children will fall for it. It disgusts me that the people behind these companies are so lacking in standards, morals and ethics that they prey on people at a vulnerable point in their lives.

Mike directed me to a site dedicated to water quackery which other than homoeopathy, was to me, an undiscovered ocean of woo. Dr Lo and his Double Helix water gets a special mention.

And Allan sent me a link to an inadvertently funny video about emotional water- with ice crystal formation supposedly dependant on exposure to words.

What would happen if the water was exposed to these words?



 

18 Jun 2013

Why She Stayed

I posted on Facebook about the photos of Nigella Lawson having her neck squeezed by Charles Saatchi and called him a typical abusive creep for making a statement minimising his behaviour by describing it as merely a "playful tiff". One of my friends said "I just cannot understand why such a smart, beautiful and independently successful woman would have stayed with him throughout torment like this!"

I thought about this and decided to respond here instead of on Facebook.
I don't know why she stayed, only she can answer. But I would be very surprised if at least some of the reasons I shall list don't apply. 

So here is why she and people like her may stay:
  • It started out so slowly and insidiously that she didn't realise it was abuse until she was married or much later.
  • She thinks that she doesn't deserve better.
  • She's afraid, confused, guilty and burdened by obligation.
  • He's hurting and needs her love. She can heal him, it's her duty to just keep giving.
  • She thinks she's to blame for most of what goes wrong- if she could stop being so emotional and weak things might improve.
  • She sees him behave properly in every other situation except with her- it's her fault.
  • She minimises incidents, explosions, hurts and humiliations as soon as things get on a more even keel. 
  • She feels embarrassed, thinks she overreacts, knows she's not perfect, thinks of herself as too argumentative and combatative. 
  • She finds it hard to keep track of what happens.
  • She still feels love for her partner- it may turn out that the emotion could more accurately described as pity.
  • She's frightened of change, of things getting even worse if she tries to end the relationship.
  • She can't imagine how things would be if the marriage ended.
  • She's afraid of being alone. 
  • She's concerned about the impact on her children.
  • She's afraid of what a man with wealth and power could do to her if she tries to leave him, how he could affect her reputation or career. Will he start telling people that she's mentally ill or unstable?
  • Sometimes it's fun being with him, she remembers good times they shared, sometimes he acts as though he might actually love her.
  • He might apologise, promise that he loves her, he'll change and do whatever it takes to make things ok, but that he can't do it without her. 
  • Stockholm syndrome is real- the person causing the hurt may then take care of her, increasing the confusion, making her dependent on him and feeling like she couldn't possibly cope without him.
  • His promises keep lighting the hope that things will improve. Hope takes a long time to die.
  • Ending a marriage goes against all her values and principles, she thinks that she must fight harder to make it work, give it one more go, try to accept things or be more understanding.
  • Ending a marriage means admitting defeat- she must accept that she failed to either pick the right partner or to make a marriage work. She might feel shame especially if she's the only person this has happened to in her family. She might feel shame that people will blame other difficulties in her life for making marriage impossible.
All kinds of women and men can be in abusive relationships. Thankfully sometimes she recognises what's been happening, fights the denial, crushes false hope and with a heck of a lot of help, she gets out of it and makes a far better life without the abusive jerk. But it never stops stinging slightly when people ask "why did she stay?"

9 May 2012

Ryan has autism but he's adorable and makes me laugh every day

There was an article about Ryan (aka Duncan) and me in yesterday's Belfast Telegraph. It's based on a piece I sent in to promote the NAS. I managed to get lots of my personal philosophy on autism in there and I'm well pleased with how it reads. It's not online yet so I scanned the article to share here.

From Belfast Telegraph autism article, May 8, 2012

From Belfast Telegraph autism article, May 8, 2012
Click on the picture to enlarge. 
And my life is now complete, I have shared a page in a newspaper with Rocky.

2 Apr 2012

Awareness, Acceptance, Action


Today is World Autism Awareness Day and marks the start of Autism Acceptance Month.
Awareness is a useless, nebulous concept. Only acceptance, action, understanding and support matter. I would like to see the day rebranded as Word Autism Action Day.

I oppose the "Light it up blue" campaign for autism awareness as it is an Autism $peaks backed movement calling for funds to "research into the causes, prevention, treatments and a cure for autism". I'm not going to support an organisation dedicated to eradicating autism.


However I am as impressed by the UN Secretary-General's message for the day as I am critical of that from the Vatican. Leaving aside the unfortunate but ubiquitous puzzle-piece imagery illustrating the piece, Ban Ki-moon has a good understanding of autism and the needs of autistic people. He realises that autistic children become autistic adults, a simple enough concept you may think but one so often ignored:
"Our work with and for people with autism should not be limited to early identification and treatment; it should include therapies, educational plans and other steps that lead us towards sustained, lifelong engagement."
I applaud all of his message but particularly like:
"Greater investments in the social, education and labour sectors are crucially important, since developed and developing countries alike still need to improve their capacities to address the unique needs of people with autism and cultivate their talents
[...]
World Autism Awareness Day is meant to spur such action and draw attention to the unacceptable discrimination, abuse and isolation experienced by people with autism and their loved ones.
[...]
Let us all continue to join hands to enable people with autism and other neurological differences to realize their potential and enjoy the opportunities and well-being that are their birthright."

It's not what we have now but we can create this world. We autistic people, parents, friends and supporters, those who are accorded the label of allies; we are tough, tireless and committed. OK, we are in truth often exhausted, overwhelmed, frustrated and worn down but we keep on going because we have to. We either know what needs to happen or know how to listen to those who have personal experience. We can advise, campaign, advocate and shake things up until it's right. We can support each other, learn from each other and keep working on advancing the civil rights of autistic people.

Today as on everyday, my boy will be happily autistic. I love him to his core, I don't wish a part of him away because that would leave a different child, not the one I gave birth to and have raised for almost 12 years. Today and always, I accept autism.

1 Apr 2012

Vatican's Autism Message


They've never heard of the social mode of disability down at the Vatican. This is a breathtakingly backwards view of autism. Archbishop Zygmunt Zimowski, get in touch and I'll set you straight on a few things.
Here's his take on autism:
"On the occasion of the Fifth World Autism Day, the Church intends to express her nearness to those who are burdened by the weight of this profound suffering. In large measure still to be explored, autistic spectrum disorders constitute, indeed, for those who are affected by them, a grave alteration of behaviour, of verbal and non-verbal communication, and of social integration, with a wide-ranging effect on the normal development and evolution of the personality."
(Emphasis mine)
WHAT!? Such disdainful, othering language. The problem, Zimowski thinks, are the disordered, abnormal "gravely altered" autistic people.

I wonder if he ever knowingly met an autistic person or did he just ask Tony Humphreys what they're like? If he spent any time connecting with a few autistic people himself, he might realise how wrong he is when he says:
"In this pathological movement of self-envelopment and closure to the other and the external world, the Church sees as impelling the task of placing herself at the side of these people – children and young people in particular – and their families, if not to breakdown these barriers of silence then at least to share in solidarity and prayer in their journey of suffering. Indeed, this suffering, at times, also acquires features of frustration and resignation, not least because of the still scarce therapeutic results. These frustrations are to be seen, in particular, in families which, although they look after these children with loving care, experience repercussions as regards the quality of their own lives, and are often, in their turn, led to be closed up in an isolation that marginalises and wounds."
Such florid nonsense.
This is a 45 year old Bettelheim-era and utterly discredited vision of autism. Autism doesn't mean closure to the outside world. And what barriers of silence is he talking about? I know some autistic people who don't speak but none who are silent. Not all autistic people are children. Not all families with autistic members are closed up, marginalised and wounded.
Zimowski continues:
"The Church and all people of good will thus feel committed to being ‘travelling companions’ with those who live this eloquent silence, which calls upon our sensitivity towards the suffering of others, following the emblematic example portrayed in the gospel parable of the Good Samaritan."
"Eloquent silence". Oh wow.

It's too awful to go through this line by line but here's a selection of words this pillar of the Catholic Church uses to talk about autistic people like my wonderful son. To the archbishop they have:
  • "a pathology which affects more people in numerical terms than could have been imagined only a few years ago"
  • "the gravest and most devastating disability"
  • "a grave psychological disturbance"

And they are:
  • "people with autistic disturbances"
  • "enveloped in the mystery of silence"
  • "a living and transparent sign of the presence of the Resurrected Christ in the world." 
No Archbishop, they are people living with a disability in the same real and right-now world as everyone else. They deserve, like all people to be treated with kindness, respect and decency. They do not require your pity or your depction of them as disturbed and mysterious ciphers. They need to be listened to, understood and accepted. It's not difficult.

25 Mar 2012

Soaring Autism Children

Soaring autism; I envision loads of autistic children running down a grassy slope, arms outstretched, pretending to be aeroplanes. A few who enjoy a good spinning session could be helicopters instead. But sadly that's not what this post is about.

Last week, several newspapers published articles on increasing numbers of children in schools having diagnoses of autism. Among these were:
I assume these identical articles, all laden with wailing and the gnashing of teeth due to the burden of the dread autism, were based on press releases from either the group featured prominently in each, The Centre for Real Education (CRE) or the contrary academic Frank Furedi who's personal views on autism are accorded much more weight than they deserve.

The NAS has a useful, detailed and well referenced article about autism numbers and concludes "it appears that a prevalence rate of around 1 in 100 is a best estimate of the prevalence [of autism] in children".

However these articles all open with a discussion of how the number of children in schools diagnosed with autism has doubled in the past and with current figures of approximately 1 in every 125 pupils. I fail to see the problem. Autism is a common condition. It was under-diagnosed for years, the criteria were much stricter so that many people who have a disability were not getting enough support. Now the criteria have been widened, there is better recognition of the condition and more children are getting accurate diagnoses.

Furedi is quoted in each of the articles as saying,
"It is unlikely to be a genuine unprecedented increase in autism, rather an institutional use of this condition to allow people to get easier access to resources. This activity ends up trivialising what is a very serious condition for some children."
That's the opinion of a man with zero expertise in autism. He presents no facts to back up his claims and he can quite easily be ignored.

The CRE spokesperson says,
"Obviously children with autism need special treatment. But the rapid increase does suggest that perhaps the figures should be looked at again.
Children should not be classified as having special needs too easily. The rise should be examined closely because it has a knock-on effect for teachers, schools and the pupils themselves."
All children need special treatment. Children with a disability require accommodations to give them access to a good individualised education adapted to maximise their learning. This happens for some people but most autistic children in schools are not getting the support they deserve.

The CRE philosophy on education is set out here in their manifesto for common sense.
That title alone tells me much about how this group sees the world. They favour selective education, "meaningful punishment" for bad behaviour, traditional values, parental choice (for the kind of parents they approve of) and demand that lots of current progressive practices "should be halted." They want more emphasis on facts and knowledge and less on skills. They demand that art, music and literature lessons concentrate on approved classics.

They have a section on "Special Needs" 
When the proportion of pupils with genuine special needs is probably only around 5%, the educational establishment's acceptance of 20% or more is intolerable.[5]
Recommendation: Immediate steps should be taken to reduce the artificially high percentage of 'special needs' by ensuring that only those that are genuine are specified – and properly catered for. The widespread practice of exaggerating special needs to gain additional funding should be halted. 
Clearly I checked out reference [5] to see where those numbers come from- and was baffled to find that it was an old article by Minette Marrin in the Daily Telegraph. For real! This is what counts as reference-worthy to the CRE.

Minette Marin is one of those click-baiting troll columnists and I've discussed her before after her vicious and hateful piece calling babies with Down Syndrome and their families "damaged babies" and "damaged families". The only other person in the CRE list of references with whom I'm familiar is Melanie Phillips.

This is speculation presented with no evidence that the needs of disabled children are being exaggerated. The CRE are not worth listening to.

The NAS spokesperson makes a typically sensible contribution to the discussion:
"We know that with accurate diagnosis the right support can be put in place so that children with autism can reach their full potential. It’s very likely that all teachers and school staff will come into contact with children with autism at some stage during their teaching career, so it’s vital that they receive quality training and strategies to support these children in the classroom."
As usual the comment sections on these articles descend into a mire of anti-scientific, disablist nonsense.

I can't imagine why the CRE and Frank Furedi were considered worth quoting on these matters. I wish the papers would look more closely at the people sending them stories and examine their agendas.

Charlotte Moore on Autism

There's a lovely article in the Guardian from Charlotte Moore about her 2 autistic sons. I always enjoy her writing on autism, it's full of heart and truth and I can relate to much of what she says. I don't like her use of the word "autist" to describe her sons in this. It's a word that is best left for people to self-identify if they so choose, it's presumptuous for a non-autistic person to use that term.

She over-generalises traits her sons possess when she writes, "Autists can go for days without eating."
Not so Charlotte.

This made me laugh, "The autistic will is one of the most powerful forces known to man."
Yep, I concurr.

My favourite lines from the article follow:
"Don't compare. Whatever your autistic child is like, he or she is a complete person, an extraordinary being who experiences the world quite differently from you or anyone else."
[...]
"Parents sometimes mourn the child they feel they've "lost" to autism, but this, I firmly believe, is an illusion. My sons were born autistic, and autistic they will always remain; my acceptance of that is wholehearted. If I had my time again, I'd do some things differently, but I wouldn't be without them for the world."

14 Feb 2012

The Good News According to Tony

I my previous post I wrote about the Tony Humphreys radio interview. I messed up the html somewhere and am unable to edit that post- even to add a title and there was another part of the interview I wanted to write about so I shall do so here.

Tony Humphreys said something that can't be left unopposed. This is what he claimed was his good news message. He told the interviewer, Claire Byrne:
"when I wrote that article, Claire, I thought this was good news. I thought that I was going to ... that parents would be relieved ... "I haven't passed any neurobiological defect on to my children, or any genetic defect." The news now is that there are creative possibilities if we examine everything in our own lives and our children's lives, we may now discover, "Oh My God, this is what may help my child and myself to have a deeper relationship."" (Emphasis mine.)

This is not good news. This is an outrageously disablist, callous and immoral position to hold. Tony Humphreys thinks we will be relieved at not having passed on our children's conditions genetically. The corollary is that he thinks we out to feel shame if our children are born with a genetic condition (or defect, to use his term) like Fragile X, or Huntingdon's Disease, or Sickle Cell, or Down Syndrome -or autism. He has this bizarre idea that we will be pleased to know that our genes lack any of those icky, troublesome defects and it was just the way we failed to raise our children properly that caused all the trouble. But hey, here comes Tony with a solution- creative examinations to build deeper relationships- or something.

What Tony doesn't understand is that I am proud of my children, pleased that my genes go towards making each of them who they are. I delight in my one perfectly autistic son. He is not defective. Many people who have autistic children are themselves autistic to some degree. More of us share some Broader Autism Phenotypes. Why would this man expect me to feel shame of something I am only proud of?

Some of the genetic conditions I listed result in illness or shortened life-span. In those cases also, guilt or shame have no place in effective parenting. Parents can be proud of their children and do their best for them while supporting proper research efforts to improve the lives of their children.

For that reason we do well to avoid the quacks and snake-oil salespeople who promise creative possibilities for problems we don't actually agree that we have.
On Saturday I listened to Claire Byrne interview Tony Humphreys on the Marian Finucane show. It was the first media appearance the disgraced psychologist has made since publishing his vile column in the Irish Examiner, apart from some quotes in that paper in which he reiterated his notions while claiming he never intended to hurt anyone.

(A transcript of the show has been made available on the Irish Autism Action Facebook page. I have used this but altered a few words to fit what I heard TH saying.)


He was introduced as "consultant clinical psychologist Dr Tony Humphreys" though I have yet to see evidence that this title accurately describes his experience and training. When asked what he though of the reaction to his piece he replied:

"I was absolutely overwhelmed, because my intention was to bring good news to people but that somehow what I said was very much misinterpreted as my blaming parents and if anybody knows my work over the last 20 years I have always said parents always do their best. Parents never deliberately neglect their children. But we all come into our roles whether as parents or teachers or childminders, other adults [unclear] with our own hurts and our own unresolved issues and these operate at an unconscious level and what's been hugely missing from the whole controversy is that we operate unconsciously we never consciously want to hurt anybody, right, or neglect our children and not love our children."
This cracks me up. Like a missionary, he sought to bring "good news" to the unenlightened. I can't wait to find out quite what this is. He then claims that all his many critics are at fault as we have "very much misinterpreted" his words. Nope, the problem isn't that we have poor reading comprehension, but that he wrote a terrible, parent-blaming, diagnoses-denying, inaccurate and illogical article. He says what is "hugely missing" is that we, the parents whom he reckons have the magical ability to train our children to be autistic, are doing this without being aware of our actions. Poor Tony, he seems to think we object to his twisted thesis because it hurts our feelings. Well it does, but that's not the point. We object because it is bollocks.

When asked if he thinks parents can cause autism by being heartless he said:

"No because I don't ... I mean, I've ... see I don't believe in autism and I concur with Dr Timimi that autism has not been established as a neurobiological fact, right. What I do believe, right, what, if anybody responds to you or me in a heartless way then we do react, right, and we find a way to protect ourselves and defend ourselves against that heartless reaction. But we do that unconsciously as well. It is not that we want to hurt the person that treats us unkindly, it is that we have a need within ourselves to be kindly met that now becomes unmet, so we retreat into a defence and what happens then is that defence meets defence and the whole thing escalates."
"I DON'T BELIEVE IN AUTISM"!!!!!! This is a position of faith, for this man evidence is irrelevant and facts don't count.

"I think one of the other things I want to say Claire, is that you know, eh, in my work over the last thirty years, ehm, my work has always been about compassion and understanding and empowerment of people and I was shocked, right, absolutely shocked at the level of hurt out there and, um, in my experience a huge sadness around that because I would never, never wanted to create that in any human being, right and so ... and also I have suffered my own hurt in, you know, in being seen as somebody who would want to cause hurt because actually it's light years away from what I would want to do."
Again with the self pity and the refusal to accept responsibility and the consequences for the harm and hurt he has caused. Instead he is sad at how he has been seen- such a consciously selfish and immature reaction. He continued to try to justify his self-serving behaviour as "opening a debate". No he isn't, he is disagreeing with well established explanations of autism, that are backed up with proper research and evidence.

The interviewer played a tape of Dr Timimi saying that he absolutely does not take the position Tony Humphreys does on autism. Humphreys was unrepentant, and when asked about how, unlike Timimi, he is "pointing the finger at parents" he said:

"Um no, well not only at the parents right, but it's not pointing the finger, in other words ... I've worked with many parents over the years, children ... parents with children. Labelling them with ASD, ADHD and the other labels that children get, right, and when parents come to me, I hold ... that I ... if they are in troubled places, my first response is to where they are at, right, and to look at what they are carrying and the hurts they're carrying and to resolve those hurts. As those hurts are resolved, they automatically change in their relationship with their children. Now it's not just parents who are in relationships with children. Every one of us is in a relationship with children and that old village, that old African saying, "it takes a village to raise a child" is so accurate because it takes a whole society to raise a child and child minders and teachers and peer groups all affect children's' concepts of themselves."
So he accepts that he blames parents and all adults involved in raising children but somehow thinks this is not pointing the finger because, presumably, all these errant adults and failing their children unconsciously. The thing that Tony doesn't seem to get, is that neglecting children will harm them, but it won't make them autistic! People who are autistic were not made that way by how their parents raised them. He reiterated his notion that we the parents of autistic people, need to get over ourselves and sort our own issues:

"But we all carry baggage, we all have major defences and unless we get the holding in relationships, we don't examine our defences, and to examine our defences is very challenging in a judgemental culture."
After more waffle he passed judgement on how we fail to respond to our children's communication.

Understanding and enabling our children's ability to communicate more effectively is one of the most important thing parents and teachers of autistic children can do. But we learn how to do that by talking to people who understand autism- autistic people being the most important teachers of all. We can also learn for experienced speech and language therapists, teachers and professionals.

Tony Humphreys pontificated at some length on his own quaint notions about autism and developmental disability. He shared an anecdote about a woman who "realised that she hadn't been making eye contact with her child." He claimed that babies "make the most amazing eye contact with us, right, because they need us first to see them and to respond to them."

My autistic son never made eye contact with me as a baby. His non-autistic siblings both did. All three were breast fed for over a year and I gazed adoringly at each one as I held them. Duncan was unable or uninterested at that age, of looking back. It was innate in him even as an infant. Tony Humphreys denies that is possible.

Tony Humphreys lists a few names of people whom he claims agree with him but ignores the proper peer-reviewed scientific research, then he said:

"there's a whole huge body of research out there. But I can understand, right, that people who have believed a certain thing for many years, it's very difficult now to have that suddenly challenged, right, and I have no trouble with sitting with these people and hearing where they are coming from once they also give me the freedom to also to say where I am coming from"
I doubt that Tony Humphreys would really want to sit with me and hear where I'm coming from. He pulls a freedom of speech defence too, asking us to allow him to say his piece. Sure, he can hold whatever bizarre notions he wants, he can think that autism is caused by extraterrestrials if he wants, he just shouldn't teach that at a reputable university, to influence people who may well work with these disabled children, or to be held up as an expert and given a column in a national newspaper. My dog knows more about autism than Tony Humphreys.

The best bit of the interview occurred when he had a quote from his article read back to him and he said it was "a total misinterpretation of what [he] said" and that he wasn't "playing word games with anybody!" Classic!

He ended with his line about opening debate and the interview ended so the good people of Ireland could worship some bells.


Today the Irish Minister for Health, James Reilly, who has an autistic son, publicly condemned Tony Humphreys (link opens video). So now the Health Minister, all the Irish autism charities, huge numbers of parents and autistic people, the Psychological Society of Ireland, a raft of experienced and respected autism professionals and researchers, the two men named in the original article- all stand united in their criticism of Tony Humphreys.

Hilariously, in the video linked to above, we learn that Tony Humphreys encourages the Minister and all parents of autistic children to read the up-to-date literature on autism. The bare-faced cheek of the scoundrel! He doesn't regret speaking out on what he BELIEVES is the truth. Again with the faith Tony!

I'd ask Tony Humphreys to do the same. I'm much better informed than he is and very much wish he would heed his own words. Then he needs to apologise and retire from making public pronouncements on autism and all medical conditions.

10 Feb 2012

Half Hearted Apology from Irish Examiner

The Irish Examiner today repeated the half-apology they made on Tuesday but have still failed to retract the article. An article is published in which they share the Psychological Society of Ireland's condemnation of the article and their disagreement with Humhrey's views.
The Psychological Society of Ireland (PSI) has described as "unhelpful and likely to cause upset" comments by clinical psychologist Tony Humphreys that inferred parents of children with autism were to blame for their child’s condition.

Mr Humphreys made the comments in an article published in this newspaper a week ago. They have been criticised both by fellow experts and parents of children who have the condition.

"It is grossly inaccurate and demonstrated a clear ignorance of the most basic understanding of autism and autism spectrum disorders (ASD)," said Brigid Sinnott, manager of ABA and Autism Services in St Catherine’s Association.

Dr Humphreys has since said parents were "never to blame" for autism and his intention was simply "to inform and enlighten".

PSI president Michael Drumm said: "Tony Humphreys’ assertions are not supported by the vast body of published research in the field of ASDs and are unhelpful and likely to cause upset."
ENOUGH of the guff about what Tony Humphreys intentions were- lots of people do harm unintentionally but they should still be held to account.

Here comes the apology bit:
Irish Examiner editor Tim Vaughan, in an editorial earlier this week, apologised for the hurt caused by Dr Humphreys’ comments.

"His comments have caused enormous upset for many parents and relatives of children with autism and I very much regret and am sorry for this," said Mr Vaughan last night.
This is a classic non-apology. Tim Vaughan is sorry, not for the actions of his paper, but for the reactions we have had to it and I do not need Tim Vaughan to apologise for me.

I think it is the best we can hope to get from this newspaper. I think they have a very skewed sense of decency and ethics. Tony Humphreys is back writing his pcychobabble column in today's Irish Examiner Feelgood section. And again his topic of choice is "love." I have not had a chance to read it yet but have it good authority that it adheres to the man's usual standards of expression, logic and accuracy.

Let us not forget that this is not all about autism. A bit of searching has shown that this man has pontificated on all sorts of serious conditions: asthma, IBS, cancer, schizophrenia, tonsillitis. The Irish Examiner have taken his columns on IBS and asthma down from their site. Yet they still employ him to write as an expert in their health supplement. I find this astonishing.

The Irish Examiner have a very skewed sense of journalistic integrity and ethics. However I read that Alan Crosbie, chair of the group which publishes the paper, at a recent conference on media diversity in Dublin, called on the governmant to:
"address the threat to humanity posed by the tsunami of unverifiable data, opinion, libel and vulgar abuse in new media.”
Isn't it ironic.