24 Jun 2009

So Gordon met Polly

The media provides endless stupid when it comes to autism. The latest Daily Mail article has the fantastically asinine headline, "I helped my son beat autism by making him give up Weetabix." But the ignorance of Daily Mail headline writers is to be expected. What though, can explain the decision of the Prime Minister of the UK, with all the difficulties he currently faces, the country in financial chaos, his party suffering near annihilation in the elections and his own precarious position as our beloved leader,to find the time to have a chat with Polly Tommey, a self appointed representative of some entity she's called "Autism Mothers".

How did this woman get the ear of the PM? She and her supporters ran an astute marketing campaign of billboards and posters costing over £500 000 (according to their press release). She and a group of other rich and attractive mothers posed in comely black dresses as the "Autism Mothers: Delivering Where Governments Have Failed." They are supposed to show that these women "aren't downtrodden, ill educated women who somehow deserve to have an autistic child."

Their billboards made out that this woman alone can save the PM £508 million a year, can help cut the divorce rate, can help him get people back to work. She is the messiah mum! She's going to make it all better.

The billboards didn't make it to Northern Ireland, but I've heard that there were loads of them about in England. For some reason, they were common in motorway service station toilets too.

But Gordon Brown for some bizarre reason fell for it and has since met the amazing Polly. I met her too 7 years ago and wrote about it here:
I spent a long afternoon listening to her theories and her detailed regime to rid her son of his autism. Back then I was impressed at her zeal and ostensible knowledge of autism's causes and treatments. Her son had had intensive ABA teaching. He had a host of supplements daily. He was fed only organic food and water from glass bottles, lest any pesky toxins intrude.

She talked about his numerous infections and how she believed the many courses of antibiotics he'd taken as a baby, together with vaccinations, were connected to his autism.
I was caught up in her pitch and wanted to think that she knew how to help me help [Duncan]. She warned me against joining the local NAS group where they refused to believe in cures and whose acceptance she interpreted as negativity.

She was a very kind lady. She welcomed me into her home and really did want to share what she knew in an effort to help. She presented me with a glut of her magazines which I read religiously for the next week or so. I tried to get Gordon to take an interest in it all. I showed him the article by the nutropath, advocating various vitamins and minerals. I showed him the articles about the labs which tested autistic children's hair, blood and stools and found all sorts of non standard levels. He scoffed at the lot of it. He just knew too much about microbiology, statistics, pharmacology etc. to be taken in by any of it. He pointed out a pile of what were (to him) ridiculous assertions contained in the magazines, and since he really knows his stuff, I dumped the lot of them.

But times have changed since then. What could be attributable to ignorance back in 2002, is less excusable today. The science has moved on. Numerous studies have failed to find a link between vaccination and autism, while as many have found more evidence for the genetic basis of the condition. Those who cling to environmental explanations in the face of the evidence are coming from a faith based position.
The Autism File magazine has moved on too. It still backs failed gastroenterologist/autism quack therapist Andrew Wakefield wholeheartedly, and still pushes unproven biomedical treatments as the best option for autistic children, and carries copious advertisements for the providers of such woo, but these days it's more widely available. Sadly, there's a market for such bollocks.

Here's how this dynamo of autism nonsense is introduced in the Daily Mail:
A few weeks ago, a one-woman campaign culminated in Polly Tommey meeting the Prime Minister to improve support for the families of children with autism.

She was fighting for the sake of thousands of other parents around the country, having become an unofficial 'Good Samaritan' for the desperate parents of autistic children.
Oh really? A petition in her favour got only 574 signatures. Where is the evidence that this woman and her company represent "thousands of other parents"? The NAS is much more representative of autistic adults and children and their parents/families.

Polly starts her article by describing the time she counselled a man who felt suicidal because he couldn't cope with his autistic 2 year old son. It's great that she was able to stop him killing himself but why did he have her phone number to call in his time of need? Why has she set herself, as an individual no more qualified than I myself am, to be the authority and source of help and information for parents of autistic children. Wouldn't a well established charity like the NAS be more useful?

Polly then describes "how unrelentingly hard it is looking after autistic children" with an apparently illustrative incident in which her son, then aged just two, pulled his six month old little brother's hair out. While I'm sure that was traumatic for the baby and hard on his mum, it's hardly unusual for toddlers, autistic and not, to inadvertently hurt their baby siblings. Oh I forgot, here's what marks it out as bizzarro autismo stuff; "Toby was screaming and his head was all bloody - but Billy was just laughing." Yes, the two year old laughed instead of recognising the full magnitude of his crime and promising to make reparations.

Polly tells us about her charmed life before the dread autism came to call and she and her husband "cried until we fell asleep" for six weeks. She calls her son's autism "regressive autism" and was "desperate to get my child back. I would have done anything for a smile or a cuddle, or to hear him say: 'I love you, Mum.'"

Polly continues with the myth of the autism gut:
People don't realise that a large proportion of autistic children have terrible gut problems, and for 18 months that was the case with Billy. Any normal child would have been taken to A&E at some point and given a battery of tests, but with autistic children doctors say it's just part of their autism.
Just what is the evidence that autistic children have more gut problems than non autistic? And why would a child go to the A&E department for tests on autism? That's one of the oddest suggestions I've heard yet. I've said it before, if you think your child has gut issues, see a doctor, but not at an accident and emergency department. When a child is sick, it's irrelevant that the child has autism. When Duncan was younger and had a limited diet and wasn't gaining weight fast enough, we were referred to a paediatric gastroenterologist as part of the investigations into his health needs. He had various tests performed, all by proper doctors and all expenses were covered by the NHS. No doctor has ever said to us that any of Duncan's medical issues should be taken as just part of his autism. But maybe we've just been lucky.

The Tommeys discovered the gluten free/casein free diet and like magic, Billy improved. His Dad was so impressed that he sought out more sources of (mis)information on biomedical approaches to autism and he "re-trained as a clinical nutritionist."
Of course he did!

But what's this, in the bit about how they were the first in the UK to try treating their son with the hormone secretin, Polly says that "Billy still suffered terrible constipation, and we thought it would help regulate his gut. It worked and Billy's behaviour improved."

But...I thought the GFCF diet had sorted all that?! Anyway, one of the couple's media mates got them onto the Trevor McDonald Tonight TV show talking about secretin and they found themselves "inundated with people asking us for help." They decided to start a magazine, it's circulation is now an impressive 44,000 and it's on sale nationally for £4.95. It's safe to say, the Tommeys words are read a bit more than my own.

Polly then explains the type of problems people ask for their help with but she admits, "I am not trained to deal with any of this. All I can do is listen and advise where I can."
So why not send them to the NAS, where the phone counsellors are trained?

She comes out with an amazing admission:
There is so much misinformation out there, and so little understanding from health professionals, emergency services and the authorities that it makes caring ten times harder.
The Autism File magazine is one such source of misinformation.

The article proceeds with an anecdote of autism induced difficulties. In this case however, if what she says is true, a terrible miscarriage of justice has been suffered by the man described. He screamed on a bus when he couldn't deal with the sound of a baby crying, was taken away by the police and sectioned. This is all told from the perspective of his mother who, Polly says, "didn't see him for six months and by the time she got him back he was pumped full of drugs and could only sit rocking backwards and forwards in his bedroom. All her hard work had been destroyed."

All her hard work?! Polly continues;
The cost of life care for an autistic person is around £2.9 million, but we think that with the right help that could be massively reduced.
This figure relates to the cost of a person with autism and a learning disability. For people with High Functioning Autism, the same authors estimated the cost at £784 800.

Polly postulates the provision of an autism centre which she reckons would cost £10million to set up and "where we could educate the police, magistrates, teachers and anyone else who comes into contact with autism."

The unsubstantiated claims of biomedical believers are shared;
There are amazing things being done to help autistic kids, particularly with biomedical intervention - detoxifying children through supplements and probiotics, diet, speech therapy and behaviour analysis.

Some children respond so well they are taken off the autistic spectrum and can return to mainstream school.

But very little of this help is available on the NHS, or through the local education authority.
But, why should the state fund this when there is no evidence of its effectiveness?
Polly might learn from an astonishingly good article the Mail ran earlier, the great autism rip-off.

Polly tells that Gordon Brown "loved the billboard campaign and said it was genius."

Money talks.

The article continues;
Gordon wants me to work with his wife Sarah to bring all the autistic organisations together so that we can work for a common cause. He wants there to be more understanding towards autistics, and for them to be more included in society.

For that to happen, the public sector needs educating, so he wants his representatives to attend a conference that our charity, The Autism Trust, is running in October. We want doctors, scientists and the public sector to learn more about dealing with autistic people.
I am all for more understanding of and towards autistic people. I don't see how this can be achieved by attending a conference run by a group of parents whose dearest aim is the removal of their child's autism. The government representatives would be better off meeting actual autistic people to learn from them about their needs for services and respectful, inclusive treatment.

19 Jun 2009

Guest post by Lady: Jamaica Day 1

Lady wrote a post on her blog and allows me to post it here too. Please leave any comments with her. Here goes:

On May the 28th my Dad, brother, Grandma and I went to Jamaica for my great auntie's funeral. We had to get two planes, one from Belfast to London Gatwick and one from Gatwick to Montego Bay (in Jamaica).

But it was not easy! We had to wait in Gatwick airport for a very long time because the flight we were taking was delayed by about one full day! When we at last got on the plane it took off and we were going. I was really glad because all of the passengers had started to get incredibly mad. I was too!

After 11 hours on the plane, we landed. It was extremely hot and I felt exhausted. We all got a taxi to our hotel which was about 10 minutes drive away. We slept as soon as we got in our rooms. Next day, Thomas and me went outside and started climbing trees in the beautiful garden. The mango trees were full of fruit. Next we went swimming in the pretty pool, surrounded by trees and exotic flowers and with a waterfall and a pond. We ate breakfast on the balcony looking over the garden.

We went back to the airport to hire a car then all drove into the country to my Granda's house. He lives in Jamaica. He lives near lots of mountains and loads of the houses are built on sticks. There are goats, dogs and chickens running about. We played with our cousins Justin, Jamie, Monique, Anesca and Rosa. We played chasies, hide and seek and I taught them some cheer leading and gymnastics moves. Justin was great at doing cartwheels.

My Granda uses a wheelchair and he likes to chat a lot. He asked me lots of questions about what I've been doing. I met him once before when I was 5 years old. He was very friendly and I like him a lot.
When we left his house we drove to Mandeville where my other great aunt, Mary lives. It was quite late when we arrived and I hadn't eaten since breakfast. I had a tiny bit of mango and cocunut at Granda's house but I was too busy playing to eat more. Dad took Thomas and me out for KFC while Grandma got some time to talk to her sister Mary.

We played with some of our other cousins who lived there and went to bed in Mary's house. It was very late and I was really tired, but I was still one of the last people to go to bed.

Explaining autism to class of 8 year olds

Last week a reader asked for advice on how to tell children in his/her son's school class about his autism.

I've discovered that some boys in my son's class believe he is brain damaged. Now they're not evil children and were happy to talk to me about this. They just want to know what's 'wrong' with their well liked classmate. Age of these children 8ish.

I've mentioned it to his learning support assistant and class teacher. I think a class talk is necessary. The problem is my son thinks he's perfectly normal with something called in his words 'I forget what is it again? Oh yeah Autism.' Of course to us at home he IS perfectly normal. He's aware that he behaves differently from others but he's very happy about this difference.

The county autism team have suggested that my son not be present when the talk is given. I don't know about this.

Can anybody help?

How do we go about this? How does anyone explain autism to a bunch of children without resorting to cats and mawkishness?

I don't know if it would be right to have a class meeting about the boy without him present. It would be better, in my opinion, to have someone, you the parent? talk to the class and then take questions. Your son could say a few words too if he wanted.

I tell children who come here that Duncan is autistic. Then I explain that it's a kind of disability that for him means it's harder for him to speak and understand other people and that he likes to do things in a different way from most boys his age. I've not had to tackle the class situation and most children who come here don't play with him much anyway as he just ignores them. I know what you mean about cats and mawkishness. Since I've been of no help, I'll leave this post up and invite the clever people who read this to leave their advice in the comments.

17 Jun 2009

Action for Children ad demonising autistic children cleared by ASA

In January, a major UK children's charity, Action for Children, released a television advertisement ostensibly about the help they had offered an autistic boy. It gave however, a shockingly inaccurate, damaging and offensive portrayal of autism and I and several others (listed here) wrote about the ad and contacted the charity with our concerns. Action for Children responded with a form letter apologising for upsetting us, as if that made it all OK, but ignoring all our valid explanations of why the ad was wrong. I created a Facebook group as a way of mobilising support and attention on the issue quickly and in a few weeks, over 2600 people had joined. The ad was supposed to have run for 3 weeks but was pulled after only 2.

In January, I complained to the Advertising Standards Agency (ASA) about the ad and on June 3rd finally received a letter with their adjudication. Unfortunately, they decided that the ad did not breach their codes. I was instructed not to publicise this decision until today when the ruling was made available on their web site.

I appreciate the time and effort the ASA has spent on this but I am very disappointed with their decision and also with the text of the ruling.

Action for Children responded to the ASA by saying that they "believed they had a responsibility to tell their stories through their [young people's] own eyes, not through the eyes of parents, carers or adults" and that "their organisation was committed to raising the issue that support was available through their advertising and campaigning, despite that being uncomfortable for some."

For the first time ever, I read that, " "Dan" (not his real name) was now an adult who was therefore able to give informed consent."
(my emphasis.)

The advertising company also responded:
"Clearcast said that, at pre-production stage, they had been informed that the stories told in the ads would be real case studies using children's own words. They considered the ads were extremely sensitively made and that the animation of the "monster" symbolised, in a child-like drawing, how a child felt when he felt out of control. They believed "Dan's" story was an uplifting one about how a boy who felt unable to deal with his autism could find help and support from Action for Children."
(my emphasis)

Does an advertising company just stating their opinion that the monstrous ad was "extremely sensitively made" make it so? Also, I dispute all these claims that the ad represents how a child/boy feels about his autism, since we now know that "Dan" is an adult.

I wrote to the ASA in January and posted my letter on this blog today. The ASA have summarised my extensive, reasonable and evidence based objections and those of the others thus:
    1. All the viewers and Autreach challenged whether the ad was offensive and distressing, particularly to autistic children and their families, because of its negative depiction of an autistic child as a monster.
    2. 31 viewers challenged whether the ad was offensive and misleading because it portrayed autism as a behavioural problem that needed to be corrected or because it implied that an autistic person chose to behave in the way they did and could modify their behaviour if they wished.
    3. 11 viewers challenged whether the ad was misleading because it suggested autism could be cured.
    4. Six viewers and Autreach challenged whether the ad condoned bullying because "Dan" appeared to believe it was his own fault that he was bullied.
    Objection 1
    Action for Children responded by talking again about the individual depicted in the ad, "his feelings of anger and frustration" and how "he overcame those feelings and was "more at peace" with himself. "

    They claim also to have "received supportive comments on the ad from senior government figures and members of the public."

    Well how nice, but thousands of people showed their disgust with the ad by electing to join a protest group, many others signed a petition against the ad, and 61 people and one autistic organisation were sufficiently bothered to complain to the ASA. Action for Children's income from grants and fees is "mostly derived from local authorities, health trusts and central government sources" according to their annual report and financial statements 2006/07 (see page 44 of the PDF link.) It is not too surprising therefore that senior government figures speak in the charity's favour. What is surprising is the insight gained into the views of the Rt Hon Hilary Armstrong MP, latterly the Minister for the Cabinet Office and for Social Exclusion on disabled self advocates.
    "She said she disagreed that the ad portrayed autism as dark or evil; that it was the effects of autism that had left "Dan" feeling angry and isolated but that, with the right kind of support, it was not nearly as bad for him; that "Dan" was not "cured" of autism but had learnt how to deal with it with sensitive help and support. She said she was aware of a section of the disability lobby that believed the behaviour of those with a disability should not be "interfered" with but she believed that view should be challenged. Even if wider society tolerated the behaviour "Dan" described, it was painful for him."
    (my emphasis)
    That line about the disability lobby deserves further investigation. I wonder from where Ms Armstrong derived this peculiar view, what evidence she has that it exists and what relevance this notion of hers has on the criticisms of the monster autism ad? I am disappointed that the ASA saw fit to use this in their adjudication as it implies that those of us who object to the demonisation of disability are some peculiar "lobby" that seek to leave disabled people to flounder.

    Objection 2
    Action for Children responded by saying
    ""Dan" had approved the concept and the drawings as how he had seen himself and what he had felt he needed help with. They said he felt strongly that he now had support to help him with aspects of his behaviour which previously he had not understood and which had created difficulties for him in his relationships."
    In the email I received from Gary Day on Jan25 this year, he wrote something else entirely. He said then,
    "Dan tells his own story in his own words, and he chose to name his condition, the drawings that you see were also drawn by Dan, the pictures depict how he saw himself before we as a charity got involved and helped Dan and his family."
    Why were they claiming at first that Dan drew the pictures when it was an advertising company all along. Why are they hiding behind this individual, as if Dan saying it makes it all right no matter how damaging it might be to all the other autistic people out there?

    They also quoted the principal of Dan's school saying that Dan used to have behavioural difficulties but with their support, he got over them. That's all great but I don't see the relevance to an ad that is damaging to public portrayals of autism for all the other autistic children in the UK.

    We learn also and I am not surprised, that the former chief executive of another major UK charity, Mencap, "supported the ad "because it raises awareness of some very complex issues that are frequently misunderstood by the general public" and who said awareness of the lack of services available needed to be raised."

    It's all about the awareness isn't it? It matters not, apparently, if that awareness causes more harm than help. An ad that makes more people "aware" of autism as a condition that makes you into an anti-social monster is supposed to be a good thing?

    Objection 3
    Another glut of false arguments are presented in the next bit of Action for Children's response to objection that the ad appeared to show Dan being cured (my points in red):
    " They said the ad showed "Dan" shedding his anger and frustration but referred to their comment above that he was still on the autistic spectrum at the end of the ad. This is not apparent to the average viewer. They said there was a wide range of opinion on almost all aspects of autism and that some groups disagreed with showing autism as any kind of problem for those diagnosed on the autistic spectrum, or their families. A total fabrication! Action for Children said they knew, however, that people and families who experienced autism also experienced problems and that they did not feel they could shy away from difficult or sensitive issues for fear of upsetting a small minority of people if they were making a case for the good of the children and young people with whom they worked. It is not fear of upsetting a minority that we have criticised, it is your misrepresentation of and damage to the lives of autistic people.

    Objection 4

    Their response to the bullying queries:
    Action for Children said the ad quoted "Dan" as saying "I used to lash out if somebody pushed my buttons or I wasn't able to do something." They said that contextualised his feelings of anger and frustration in that they were not just in response to other people - he was also generally frustrated with things around him. No one objects to Dan's feelings nor that he was helped to find ways to deal with them. They said the crucial aspect of Action for Children's support was that it allowed "Dan" to be "more at peace with himself" and less likely to respond with violence to things that perhaps did not warrant that response. Action for Children said they did not condone bullying or cruelty but that, nevertheless, children and young people found bullying was a common and profoundly damaging experience. I contend that the ad itself would cause more bullying of autistic young people as it portrays them so badly.
    It is worth noting that the opinions of the autism professionals who spoke out about the ad or against damaging portrayals of autism, are missing from the ASA's adjudication report.

    The ASA's Assessment
    Objection 1. Not upheld

    The ASA say:
    We considered, however, that they had taken pains to represent autism and the issues it raised in a way which, in their experience, was accurate and truthful, and that the message of the ad was positive. We concluded that the ad was unlikely to result in widespread offence or to have the effect of undermining the dignity of autistic children and their families through its depiction of autism.
    I feel that I demonstrated in my letter the ways in which the ad was inaccurate, untruthful and that it's message was damaging. The ad did result in widespread offense and did undermine the dignity of autistic people. That the ASA don't agree is disappointing, but it doesn't change the facts.

    Objection 2. Not upheld
    We noted the concerns expressed by the viewers and the points made in defence of the ad by Action for Children and Clearcast. We considered that, while views on how best to address the issues autism raised might differ, the story told in the ad centred on one person's - "Dan's" - experience; on the difficulties he considered he had experienced as a result of his behaviour and his reactions to his surroundings; his wish to address them and the difficulties he had experienced in doing so until he received help and support. We did not consider the ad suggested an autistic person chose to behave in the way they did or that they could simply choose to modify their behaviour if they wished. We considered the ad did, however, tell the story of how "Dan" had wanted to deal with his situation and how, with the right help and support, he was able to do so. We concluded that the ad was unlikely to cause offence or to mislead viewers by portraying autism as a behavioural problem or because it implied that an autistic person chose to behave in the way they did and could modify their behaviour if they wished.
    I disagree with this assessment. As I showed in my letter to them, the NAS have shown that 17% of people already think that autism is just bad behaviour. I expect that number would increase if those being surveyed were shown this ad first.

    Objection 3. Not upheld
    We considered that the story told in the ad centred on one person - "Dan's" - experience; on the difficulties he considered he had experienced as a result of his behaviour and his reactions to his surroundings; his wish to address them and the difficulties he had experienced in doing so until he received help and support. We considered that, just because issues or a situation could be addressed and supported, it did not necessarily follow that they were completely resolved or, in this case, "cured." We considered that views on how best to address the issues autism raised might differ and that, while the ad told of the experiences of how one person had been helped to address the issues they considered the condition raised for them, it did not suggest that the condition was one that could be cured or that "Dan" had been cured. We concluded that the ad was unlikely to mislead viewers by suggesting the condition could be cured.
    Making this all about a man called "Dan" and claiming that as it's just one man's opinion, and then presenting this as if it were actually the views of a child, does not exonerate the charity and the professional advertising company from culpability. This ad was expensive to produce and run and portrayed autism in the way Action for Children thought would best gain them publicity and support as the saviours of even tragic cases like Dan's.

    Objection 4. Not upheld
    We noted the concerns expressed by the viewers and the points made in defence of the ad by Action for Children and Clearcast. We noted that the ad referred to "Dan" being insulted and reacting to that by being physically violent to the person concerned. We considered that, while "Dan" regretted reacting with physical violence and wanted to be able to deal with the situation more appropriately, the ad did not suggest that "Dan" considered it was his own fault he was bullied or that bullying behaviour was acceptable. We concluded that the ad was unlikely to be understood as condoning bullying.
    I consider that the ad implies that autistic children are more likely to act aggressively than typically developing children. This is another misrepresentation as aggressive behaviour is not one of the diagnostic criteria for autism or Asperger's syndrome.

    Professor Tony Attwood, criticised this ad with specific reference to the bully message:

    "“I am very concerned that the advert gives a message that children with autism and Asperger’s syndrome are dangerous and potentially disturbed.

    When the child refers to “correct errors in my behaviour” this seems to imply ‘brain washing’ and a sense of guilt for how he behaved.
    Many of the behaviours I consider as coping mechanisms for the lack of understanding and respect from other people.
    He refers to reacting when people insult him. Those that insulted him need the treatment.”

    Professor Attwood was not quoted on the report.

    So Action for Children can celebrate that they have won. I had hoped that the advertising guidelines might provide some protection for autistic people from the disturbing way Action for Children chose to portray them. But that has not happened. Action for Children must be proud of their victory, their right to show autistic children as monsters thrashing around terrifying the population has been upheld. Well done to them.

    My Letter to the ASA about Action for Children monster ad

    Now that the ASA have ruled that the monster ad did not breach their code of practise, I will publish in full the letter I submitted about the ad. I will shortly publish my view on the ruling and Action for Children's response.


    The Complaints Reception Team
    Advertising Standards Authority
    Mid City Place
    71 High Holborn
    WC1V 6QT

    31 January 2009

    Dear Sir or Madam,

    While I commend the work Action for Children does as a charity, and have no doubt of their good intentions, I object to this campaign and contend that it breaches the CAP Code for TV advertising, section 11.3.4, relating to ethical responsibility, in the following ways.

    11.3.4(b) The problem AFC seeks aid for is exaggerated by the use of highly emotive imagery. A cartoon monster is shown jumping around in an urban landscape, attacking some accelerated film footage of real people. As this image plays a boy's voice-over says, "I used to lash out if something pushed my buttons or I wasn’t able to do something. Things that wound me up were if they’d insulted me I would physically hurt that young person." Then we see that the monster has a sad looking normal boy trapped inside, looking out through its mouth. Straight after that image is shown, the boy says the words "My parents sought out help with my autism because it was becoming a pain in the bum."

    [17/06/09 edit; It turns out that he actually said, it was "a pain for them", but it was very unclear and no one from AfC saw fit to correct the transcripts any of us had made on our blogs even though they spent long enough reading them from their offices in Doncaster.]

    This exaggerates the problems autism causes and implies that autism is making the boy a monster. It connects autism with aggressive, anti-social, monster-like behaviour.

    My 10 year old daughter said on viewing the ad, "It's showing the boy stuck inside a monster and that's autism and then he goes away to a school and he comes out of the monster and he's not autistic any more. But that's not right, Duncan (her autistic little brother) isn't a monster. He's a human being."

    11.3.4(c) The AFC ad does not respect the dignity of vulnerable children and young people who are the very people AFC are supposed to help. On the morning of Sunday 25th January 2009 I created social networking group on www.facebook.com in order to campaign against this advertisement. Between the time of its opening and the time I am writing this letter (the evening of Saturday 31st January 2009), 940 individuals have read my reasons for starting the group, and have decided to support my protest by signing up to the group. The group can be viewed here:

    Professor Roy Grinker, author of "Unstrange minds: Remapping the World of Autism" has joined this group. There is another renowned autism author and at least one distinguished FRS scientist as well as many autistic people, and others who have autistic family members and friends. Others joined because they care about the human rights and dignity of all people including those with autism.

    AFC replied to the dozens of complaints they have received about the advertisement by sending everyone form letters which request that we take our concerns to the ASA. In some of their responses, AFC defend the ad by saying that it uses words and drawings Dan produced to describe himself. In other responses they say that Dan "approved" the ads.

    But an advertising company created this ad, employing both marketing professionals and art direction staff. This ad is not, no matter how AFC have tried to spin it, the self-published, direct telling of one child's experiences. This ad shows how AFC choose to portray autism by using Dan's story, with his poor self image and worries. They have used the troubles and fears of a vulnerable child to generate pity and fear, to make them appear to be heroic in saving even tragic cases like Dan. They cannot claim that they were merely giving him a voice.

    The harm to other vulnerable young people just like Dan, is too great to be ignored. There is a great deal of misinformation in the public sphere about autism. The National Autistic Society carried out studies recently about public attitudes to and understanding of autism:


    They uncovered a great deal of misinformation. For example, 17% of those surveyed mistakenly thought that some children with autism don’t have a disability, they’re just badly behaved. Advertisements like this one could well cause that number to increase as it implies that Dan merely had to learn to control his behaviour. The voice-over reinforces this view, "Thanks to the carers I was able to correct a lot of errors in my behaviour and become a better person." There is no mention of the effects of outside influences on the child's behaviour, or the difficulty for any child approaching the teen years in dealing with bullies ("if something pushed my buttons", "if they’d insulted me") and the pressures of growing up. There is no mention of the extra difficulties in dealing with these pressures for a child with a disability that affects communication skills, sensory precessing, and who can find certain social situations more difficult than his non-autistic peers.

    Aggressive behaviour is not one of the diagnostic criteria for autism or Asperger's syndrome. The ad implies that autistic children are more likely to act aggressively than typically developing children. This is another misrepresentation.

    Professor Tony Attwood, internationally respected researcher and expert on Asperger's syndrome, recently criticised this ad;

    "“I am very concerned that the advert gives a message that children with autism and Asperger’s syndrome are dangerous and potentially disturbed.

    When the child refers to “correct errors in my behaviour” this seems to imply ‘brain washing’ and a sense of guilt for how he behaved.
    Many of the behaviours I consider as coping mechanisms for the lack of understanding and respect from other people.
    He refers to reacting when people insult him. Those that insulted him need the treatment.”

    The ad implied that autism was a monster trapping Dan, and after time and help from AFC, he was able to (according to the ad's imagery) climb out of this monster, into the calm green field and crush the monster with his foot when it threatened to devour him once more. It implies that Dan is no longer autistic and is much better off that way.

    There has long been a view among some people, of autism as a shell which traps a "real", non-autistic children inside. It was first used by Bruno Bettleheim who described the autistic child as an "Empty Fortress" and was of the (now utterly discredited) opinion that "refrigerator mothers" cause their children to "act" autistic as a defence mechanism. This imagery is still used by those who emphasise a model of autism intervention of cure and prevention instead of helping those living with the condition to thrive. Some unscrupulous people make money by selling false therapies to desperate parents, who are even now, led to believe that they can release their precious child from the clutches of the "autism-monster". Parents of recently diagnosed children may see this advertisement and worry unnecessarily about their children and may be more willing to fall for the false promises of those selling dangerous and expensive, fake autism "treatments." The National Autistic Society study showed that 56% of their respondents thought that autism was curable. This ad helps enforce this discredited theory of autism.

    11.3.4(d) That 2000 (and rising) people have joined a Facebook group protesting the ad, and that so many have left messages expressing their disappointment, worry and hurt at the ads on AFC's YouTube page, on personal blogs, parent and disability forums and that so many have already written to AFC to complain, shows that this ad has aroused strong feelings and caused great distress.

    The representation of autism by the media is a very sensitive area, especially coming so soon after a great deal of public discourse about the possibility of prenatal screening for autism.

    The AFC campaign isn't merely offensive. It also misrepresents autism, portraying it as an external monster to be defeated. It will damage the self esteem of young autistic people in particular to see their autism, an integral part of themselves, depicted as monster trapping them, as something to be defeated. They will see themselves depicted as frightening beings whom others fear. There are many testimonials from parents saying that their autistic children were disturbed by the ad. There are many descriptions of the hurt the ad has caused to older autistic people too. One woman tells of her 20 year old daughter who is seeking work and fears that the ad may make her less employable to employers thinking she could be aggressive and lack control.

    This ad contributes to the mass of misinformation and prejudiced, negative rhetoric about autism in the media and wider society. One autistic adult wrote to me about the effect this has, that such rhetoric will, "contribute to the widespread social construction of prejudice, and how that prejudice, in the clueless hands of the general public, endlessly pelts us and pounds on us, every minute of every day, day after day, week after week, month after month, year after spirit-crushing year... "

    AFC seem to have opted to jump on the autism bandwagon, thinking that autism always gets the media interest they seek, given its prominence in captivating articles like those on the MMR and the recent high profile debate on prenatal screening. AFC have used the problems of autistic children to raise their profile, but have misrepresented the condition. This is utterly unethical. Every airing of the ad furthers the potential for damage.

    To end, I would like to use the words of AFC themselves. In a report produced by the charity, they say (regarding the current government's policies):
    "With regard to younger children, the emphasis has been on children’s vulnerability and support for parents. With respect to older children, there has been a tendency to demonise them and to fail to see young
    people’s viewpoints, which is at odds with ministers’ avowed wishes in other contexts to listen to and be seen with young people."

    Many young people have written to AFC, and have written on my Facebook group and on blogs and forums about how they fear this makes them appear to the public. Others have expressed their dismay and fears about this ad to their parents who have signed on their behalf. Other allies have signed because they object to the unethical depiction of autism and their concerns for the ill effects this ad is having on the people it seeks to help.

    AFC know that to demonise children is wrong, that to fail to see their viewpoints is wrong.

    I would like to see AFC withdraw this advertisement, apologise to the autistic community and commit to seek the input of autistic-run advocacy organizations, and well informed mainstream autism organisations like the National Autistic Society in future advertising and fundraising efforts.

    15 Jun 2009

    Home Education Under Threat

    All of us who home educate our children in the UK will already know about the Badman review of home education in the UK (PDF link).

    I am shocked and very concerned by the review and the recommendations (summarised here). It is low on evidence and high on speculation. There is so much in this document to object to. I can only mention a few of the problem areas in this post.

    These recommendations seem to be designed to end the right of children to receive the personally optimised education that their parents can deliver at home. Duncan's learning style will not be accommodated if this becomes law as I will have to drastically change the way he and his siblings are educated to bring it into line with the government's particular preferred method.

    Nor can I be sure that I will even be considered eligible to keep on teaching my children at home as Recommendation 23 states:
    "That local authority adult services and other agencies be required to inform those charged with the monitoring and support of home education of any properly evidenced concerns that they have of parents’ or carers’ ability to provide a suitable education irrespective of whether or not they are known to children’s social care,
    on such grounds as:
    • alcohol or drug abuse
    • incidents of domestic violence
    • previous offences against children
    And in addition:
    • anything else which may affect their ability to provide a suitable and efficient education."
    (my emphasis)

    What the heck does "anything else" mean? If an inspector doesn't like your choice of books, or how tidy your house looks (neat=repressed family, children not allowed to be creative, messy=not enough structure, children probably neglected?!)

    Could the presence of an autistic child who shouts a bit be construed as too disruptive to my "normals"? Nothing would surprise me.

    Like other concerned parents, I am extremely dismayed about Recommendation 7:
    "The DCSF should bring forward proposals to change the current regulatory and statutory basis to ensure that in monitoring the efficiency and suitability of elective home education:
    • That designated local authority officers should:
    have the right of access to the home;
    have the right to speak with each child alone if deemed appropriate or, if a child is particularly vulnerable or has particular communication needs, in the company of a trusted person who is not the home educator or the parent/carer."
    (my emphasis)

    I do NOT want to allow local authority officers more rights than the police-to enter my home when there is no reason to suspect any crime or wrong doing is occurring. I will NOT allow any of these people more rights than the police-to speak to my children without myself or their father present. I do NOT trust them to speak to my typically developing children alone, never mind my autistic son. They claim that children like Duncan would have a "trusted person" with them, but it's not explained whether this is someone he and I trust, or someone they trust.

    I utterly reject the calls among some commentators in the media, to accept the draconian measures of registration, inspection and alteration of educational philosophy because they claim, if you have nothing to hide, you have noting to fear.

    This is not so. I do not invite the police to inspect my house and garage to assure them that I am not storing stolen goods or growing illegal drugs, I do not hand over my emails and phone records to prove I am not a terrorist or hacker, nor do I submit my children's meal plans to a state nutritionist to prove they are getting a balanced diet. There is a presumption of compliance with the law and my parental duties. Like all citizens, I expect that it unless the organisations charged with the important duty of providing justice and protection have good reason to suspect that I am up to no good, then I am entitled to privacy and a presumption of being law abiding.

    Although one of the reasons the review had been ordered by the Secretary of State for Children, was to "investigate suggestions that home education could be used as a ‘cover’ for child abuse," Badman had to admit in his findings that:
    "8.14 With regard to other specific groups within the remit of this inquiry I can find no evidence that elective home education is a particular factor in the removal of children to forced marriage, servitude or trafficking or for inappropriate abusive activities."
    Several newspapers have utterly inaccurately produced headlines proclaiming that children like mine and those of my many home-educating friends, are more at risk of abuse! They seem to reckon that because the review claims that "the number of children known to children’s social care in some local authorities is disproportionately high relative to the size of their home educating population" that this correlates to more home educated children suffering abuse or neglect. In reality, as the report also admits, they do not have accurate figures for what percentage of home educated children are in touch with social services. But in any case, there appear to be more cases of Special Educational Needs among the home educating population than average and many of these people are, like my own family, known to social services because of a child's disability. There are many entirely innocent reasons why families may be known to the social services (disabled parent, malicious reporting of children "making noise in the garden when they're supposed to be at school" etc.) and it is a shocking slur to imply that this implies some wrong doing among such families.

    What is dangerous to all those children in the UK who are harmed by their carers, whether they are at school or not, is the divergence of scarce resources into looking for non existent problems among a subset of the country's population. It is well known that there are not enough resources to properly meet the needs of all the children who really do need help to deal with threatening situations. As a poster on an email list expressed it, putting all home educators under suspicion merely because they make the legitimate choice to have their children learn without school does not help those charged with ensuring child protection. It only increases the size of the haystack.

    Finally (for now) I draw attention to Recommendation 18:
    "That the DCSF should reinforce in guidance to local authorities the requirement to exercise their statutory duty to assure themselves that education is suitable and meets the child’s special educational needs. They should regard the move to home education as a trigger to conduct a review and satisfy themselves that the potentially changed complexity of education provided at home, still constitutes a suitable education. The statement should then be revised accordingly to set out that the parent has made their own arrangements under section 7 of the Education Act 1996."
    I may not be interpreting this correctly, but it seems to me to say that the Statement that was until now, only enforceable in the school setting, must now be enforced at home also. Therefore, whatever recommendations the education authorities employees make, must be adopted by the parents no matter whether they tie in with their own priorities and preferences and what they think is best for their child. This is a just another worrying development.

    I can only hope that despite our many differences in approach and ideology, we home educating families will be able to pull together to stop these awful recommendations becoming law. It will not be easy.

    11 Jun 2009

    Duncan's 9th birthday

    The day began with the birthday boy, and king for the day, unwrapping his birthday present; a Hornby train set with a Percy engine. Later his dad and I took him to the playground. He had a go on the play train, helping push it around on the turntable. He decided to have a dip in the paddling pool, being the only child willing to face the chill. Last thing after dinner, he sang the birthday song to himself, blew out his candles and we all had a slice or two of chocolate cake. It was a good birthday.

    5 Jun 2009

    Just as he is

    Having spent so much time with Duncan this week has given me time and space to think about him and autism and expectations. He was a very restful companion in many ways. There wasn't a need to chat incessantly. He did talk a lot, but not all the time. Often I missed what he was saying as he spoke too quietly in the noisy surroundings and he didn't want to repeat himself. His observations were probably not aimed at me anyway, he was likely just musing to himself. When we relaxed in our room, he pottered about, playing with his toys or splashing and telling himself complicated tales in the bath or he snuggled beside me and watched the TV. But it was very quiet and peaceful.

    In the parks, he sat in his buggy with his long legs folded up and his stuffed Donald Duck clasped in his arms. He had his cap pulled low over his face and on the second day, despite the heat, wanted to wear his green hooded top. He wore his ear defenders about 1/3 of the time.

    I thought about others who might think I should be encouraging him to walk rather than sit in the buggy, engage in conversation instead of companionable silence. I dismissed these ideas as impracticable, unnecessary, intrusive and unfair. I was frequently overcome with happiness at sharing this time with my son. He was experiencing such joy and he was such a content little soul, that I was brought to tears a few times just out of love for the perfection personified that he is.

    I know that I have been described as lazy, a lunatic even, and as having "given up" on Duncan, or for thinking I have "missed my chance" to apply some sort of early intervention that would supposedly have minimised his autistic difficulties. That is why, it has been said of myself and others like me, we speak out against the quack "cures" foisted on some autistic children and the false blaming of vaccines and toxins for having caused their condition.

    But that's nonsense. Duncan is who he is. He is autistic and there is nothing I can do to change that. I can parent him and teach him, I can help him like his siblings to learn more as he gets older, to develop more knowledge and skills, to change from a helpless infant into a man as competent, self-reliant, decent and as capable of continued learning as he can be. There was no missed narrow window of opportunity. He will learn best when he is comfortable and feels safe and appreciated. I do not have to make him suffer by cutting off the place of safety his buggy has been.

    I thought about the autism therapies marketed, the Floortime, RDI, ABA and Son Rise. I thought about what I have read about each of these. I have not followed any of these autism therapy programmes. Well, I did use PECs with Duncan, but only for a short time and not exactly as instructed in the manual. The cards were very useful for a time though.

    But for the others, I bought or borrowed books about them and though in a few of these books, I picked up a couple of useful ideas to try, none of them appealed to me as something to do wholesale with Duncan. None of them have any good evidence of their effectiveness beyond parent testimonials. Though ABA is less bad than the rest, it's main claims are still based on a badly run study over 30 years old the results of which have not since been replicated.

    I know many people have found some of these ideas have helped them and their children. That's good. But I dislike the marketing of each of these therapies. I do not think that it is necessary to follow the trademarked and expensive therapy of some guru to be able to teach an autistic child. As Duncan enjoyed the parks in his own way, I though about what I read in the RDI book for example, that you're supposed to make every moment a time for developing those relationships, for making the child interact with you enough to overcome those pesky autistic deficits and change their neurology. The thought of pushing myself into Duncan's inner world at every opportunity and distracting him from all his own thoughts and observations with my own desire to make him talk and ENGAGAE is abhorrent to me.

    I thought about how much of these therapies are based on the idea that autism is so terrible, that autistic people are lesser people. I don't agree with that. I witnessed my son enjoy perfect happiness. He was doing what he wanted to do, we negotiated so that my needs were also met. We both had fun. I may be making a circular argument here for which I apologise. But it comes down to my acceptance of him and his autistic way of being. It might be harder in some ways to deal with the aspects of life that present fewer difficulties to the parents of non-autistic 8/9 year olds, but that's how it is and in some ways, I have to admit, it is actually easier. But then, no-one chooses to become a parent because it's easy.

    4 Jun 2009

    Practically Perfect Disneyland Paris

    We left on Monday. The flight wasn't until after 6pm but Duncan was awake shortly after 4am in his excitement. Not excitement that we were going on holiday mind, but that a book I'd ordered for him from Amazon a few days previously was most likely to be delivered that day. Now I'd partied hard (for me) at the weekend and Mummies need their sleep, especially before setting off on adventures. Thankfully I managed to get him back to bed for a while, but he was still up early and waiting by the window for the postman. Glory be to the Royal Mail for they hath delivered unto us a saviour, in the form of a 2nd hand copy of Ladybird's "Percy Runs Away" a book we already have in few other formats and one he and I could both recite from memory.

    The flight went well. I brought his buggy which proved to be so useful in Florida and just a couple of small backpacks that I could manage alone. I'd organised a taxi shuttle from the airport and we were met by the driver as soon as we exited French passport control. Only 40 minutes after we'd landed, we were in the hotel and checking in. Fantastic. On booking the hotel I'd requested a room close to the reception and breakfast restaurant if possible. They had delivered. We were staying in what had been the cheapest Disney hotel on site but our room was perfect, with a large double and sturdy bunk beds in the block nearest reception. Duncan loved our cowboy room and claimed the top bunk at once. We settled in then went to buy some drinks (I'd packed a lot of snacks) and he pounced on a stuffed Donald Duck toy. I bought it, he's been on a Donald phase for a while now and I know from before that these toys are useful and important to him. Donald was from then on his companion and protector and a most excellent duck.

    Donald, cuddly and kind to overloaded little boys.

    The only slot left for breakfast was 7.30 but we managed to drag ourselves awake and to the crowded breakfast hall. I'd asked for and received permission to scarper back to the room with our selection of rolls and croissants. We did the same both mornings and had a much more relaxed time that we'd have managed in the bustling and loud refectory.

    Sometime after 9, we took the bus to the parks. It was a bit of a hassle getting the buggy on board but I'm pushy enough and we managed. After picking up Duncan's Easy Access Pass (green card to enable shorter queuing times and use of wheelchair accessible entrances) we were off on our first ride, Buzz Lightyear's Laser Quest. In a short time, we followed up with the Small World, Pinocchio and Pirates of the Caribbean rides. Then Duncan wanted to go "home". It was only 11.30. So we went towards the exit but on passing the Disney Rail Road station, he agreed to my suggestion of a ride and we did a circuit of the park.

    On the train, photo taken by a nice German man with whom I'd griped about the lack of a ramp onto the disabled customers' carriage.

    Afterwards, he asked to visit the Studio park. We queued for a few minutes for a hug and photo with Sully, then went to watch Crush's Coaster. He asked to go on the bus, meaning the Backlot Tour. This was I think, the highlight of the day. Having seen it before he knew what to expect but was still exhilarated by the fire and thundering water. Very cool.

    Awesome Autistic Dude!

    I was surprised that he asked to go see Stitch Live next as that had been one of the most difficult parts last time. But I complied and it worked out great. He laughed his head off with everyone else.

    It all gets a bit much, this work at having fun.

    We were both ready for a rest and went back via the train station shop where I picked up a few ice-creams and drinks. Mummy needed a cold beer after all that time in the sun. We had a lovely relaxing few hours in our room. He spent ages in the bath while I read a bit more (Restaurant at the End of the Universe) and we both had a wee sleep. Very chilled.

    We went out again at 6 although the parks closed at 7. I'd hoped to buy him food in the place where they show cartoons but it was shut. Duncan wasn't so happy. It was busy and hot. "Too much" he called as he buried his head under Donald. I pushed him out to McDonald's and we queued for ages to buy him food and ice-cream. He ate as we walked home. It was much calmer on that particular path. After another relaxing time in our room (more bath time for the boy) we headed back to the hotel shop for water and he picked out a tiny ceramic bell to buy. It was just his sort of thing. Soon enough he climbed into his bunk and slept.

    Next morning we hung around in the room a while later as we wouldn't be able to return once we'd checked out. We still left too early and it was hard at times throughout the day, just keeping going in the heat. The only ride Duncan wanted to go on by then was Phantom Manor so off we went, but it hadn't opened so we watched his beloved Big Thunder Mountain instead. Unfortunately, he still didn't feel even close to being ready to actually ride it. Shame, for I love it!

    We wandered through Fantasy Land which was very crowded and in which there were speakers blasting out princess music at every turn. Duncan was fed up! He did agree to go on the Snow White ride and enjoyed it, but vetoed everything else.

    He wanted to watch a show in the Studio but it was too late when we got there. We headed to the Rock'n'Roller coaster exit instead to watch for a while. I made the mistake of saying "let's go" when I was ready to leave and he panicked for a while thinking that I wanted him to go on the ride. Oops! Reassured, we left and went to the next show, a Playhouse Disney thing in French. It was nice and he liked it well enough but apart from Mickey and co. the characters were unfamiliar and it was all a bit too babyish.

    We returned to ride Phantom Manor and he loved the spookiness. After another go on the Small World boat and a circuit of the park on the train, we settled in the Videopolis for a few cartoons in the cool. By then I was just trying to pass time. Duncan wanted to go back to the hotel and was disappointed that we couldn't get into the room again. But he consented to watch the parade with me so for the first time ever, we went to one of the dedicated viewing spots for disabled customers, showed our green card and waited in the roped off area. It was much better there. Duncan worried a bit about the potential for loud noises and bangs but was assured there would be loud music but no bangs. When the parade passed, we had an excellent view, right by the curb. He enjoyed it and several of the characters approached him and the others in our area to touch hands and ruffle hair. He loved that, otherwise I'd have pulled him back!

    So finally all Disney-ed out I pushed him back slowly to the hotel, got our bags and awaited the taxi. It was early and we arrived at the airport 3 hours before the flight was leaving. Those were not such pleasant hours, especially since on passing passport control there is nowhere to sit but a cafe. It's a horrible place to wait.

    To kill time, I took Duncan to the loo and he had great enjoyment washing his hands using touch-sensitive taps. We had been the only travellers in the vicinity so I didn't try to attenuate his loud appreciative calls of excitement. There was a loud knock on the door. Thinking someone else needed to use the disabled person's toilet, I called back that we'd be out soon. The person knocking informed me that he was "the police" and that I was to open the door asap. Thankfully I had not commenced my own business. I opened to find 2 large uniformed men looking around. I explained in my finest Franglais that my son is disabled and was excited by the taps. They left us alone.

    A while later as I pushed him up and down the bleak hall I had a laugh about it, but not too much in case they decided I wasn't in a fit state to travel. We couldn't get into the seating area for another 30 minutes and the police had just about banged the toilet door down when I needed to use it. Apart from that, the journey home was fine. A baby started screaming 15 minutes before we landed and Duncan screamed a couple of times in sympathy, but thankfully no more than that. He had to visit the toilet twice but there was no-one sitting beside us. He worried when we'd landed and the plane was pulling in beside the terminal building that a crash was imminent, "Pull back! Apply the brakes!" he recommended.

    I asked and was allowed to fast-track through passport control, we picked up the car and weary, we headed on the last leg of our journey home.

    1 Jun 2009

    Just popping off for a while

    We'll be leaving in a few minutes. I've got everything ready; it's lots easier when there are only 2 of you. The boarding passes etc. have been printed, and I have made a cute little badge for Duncan to wear with a picture of some Finding Nemo characters and the words, "awesome autistic dude!"

    Duncan is pleased that the Thomas & friends book he had asked for finally came from Amazon so he can carry it with him. I've just got a small rucksack with our stuff in and he's taking a tiny bag with a few books and toys. Thankfully, the forecast is for pleasant, sunny days, hooray!

    I had a lovely time in London. Caught up with a couple of my besest friends in the world (BFF as Lady says) and enjoyed the sun and celebrations with my sister, 2 of the brothers and various friends. Her birthday was well and truly marked in style. She is as beautiful and delightful in every way as ever. I drank more champagne than in all the rest of my life combined, much of it in cocktails. So good.

    Thanks for all the good luck comments on the last post. No doubt there'll be a report on the proceedings when we return.