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.

Entrenched evil-doing in Ireland

We all knew what to expect. It is still shocking though when you read the report, or, as much of it as you can stomach. The people of the church carried it out, they covered it up. Generations of children had their lives ruined, and in some cases, taken. The state conspired with the church leaders to hush the suffering children and to ensure that their pain wasn't made known beyond the cold stone walls of the orphanages, reformatories, "care" homes for disabled children and industrial schools. What was done to these children was brutal, far worse than the accepted level of child abuse tolerated at almost all schools in the country, the run of the mill beatings and canings by teachers which were legal and known as corporal punishment. These were an expected part of education in those not far gone days. What happened to these children, taken from their families or who had no families, was far worse. They were abused in every way. They were beaten, bullied, raped, neglected.

Reading Nick's blog today I learned of the chapter of this massive document dedicated to the abuses perpetrated in Special Needs Schools and residential services. A table is used to show the 11 combination of types of abuse the witnesses endured. It is a long list of heart breaking tales, examples of hurts, lives destroyed, families torn apart. To pick a random example:

"I was locked in the washroom overnight. ......( named religious staff member)... would walk out and close the door, you’d have your ...night clothes... on and you could stand at your basin and do what you liked but you had to stay there, no blankets, mattress, sleep on the bare floor. We used to get together in a corner and try to keep each other warm, it was scary, you’d hope that nothing would happen, you could also be there on your own. ... You could be there for more than a few nights in a row, freezing cold."

For these disabled children, the report describes how they;

"generally reported having great difficulty in finding ways of disclosing their abuse to anyone. In all instances the witnesses’ particular disability was described as a barrier to communication and disclosure, both at the time and subsequently. A number stated that this difficulty was particularly highlighted when addressing such a sensitive topic as sexual abuse."

The report also details ways in which the appalling start these people had in life has affected them as they've grown up. I do not excuse or forgive this brutalisation of the vulnerable. I cannot. I want to see a revolution. The people who did this and the others who colluded in the cover up cannot be allowed to continue to wield the power and influence over so much of Irish life any longer. We ,must stay away from their churches and ceremonies. We must freeze them out. We must take back control of our schools and hospitals, care homes and residential facilities. They cannot be allowed to get away with this. They have bullied and impeded our lives for long enough. The children who suffered in the Irish gulags are owed a duty by all citizens to stand up against the vile creatures who harmed them. It is no longer good enough to point to all the good some of the clergy and others in the religious orders have done and to say that many of them are not abusers, that the majority are decent men and women of faith. That is true, at least I think so, but then I haven't read the full report. But the leaders are up to their necks in their culpability for allowing this to happen and as such have tarnished the whole show.

There must be trials and prison sentences. The guilty must be named and sent down for their crimes. The incoming leader of the Catholic church in England and Wales was wrong when he described the people who have admitted some portion of their crimes (and only when absolutely forced to do so as their cloak of concealment was finally dragged away) as "courageous".

I remember being a child and how powerless I was, and I had a very safe and happy childhood. I can’t imagine living in fear every day like generations of my country people have. I look at my own children, exasperating, joyful, vulnerable, hopeful and the idea that little people like them can be harmed for the perverse pleasure and convenience of religious orders fills me with fear and anger and unfortunately, hate. I am ashamed of my nationality and of my abandoned religion.

Other posts:
Bock
Nick
Paddy Doyle

Johnny Ball, what happened to you?

I listened to Stephen Nolan's bumptious phone-in show on local radio this morning. He had a few people on discussing our climate change denier Minister for the Environment, Sammy Wilson and his latest kerfuffle in Stormont. The Belfast Telegraph reports that his department admitted that he, "did not consult any scientific articles when deciding not to air the Westminster-sponsored Act on CO2 ads."

Naw, our Sammy came up with that grand idea off his own back. He knows better that them scientists with their ungodly evidence.

He called another assembly member the 'carbon king of Stormont' because he lives 100 miles from the parliament building and has to drive, public transport links in NI being utterly pathetic, and getting worse the further west you go.

But then, once the drone of whinging politicians blended to innocuous background noise to my kitchen cleaning endeavours, Johnny Ball was on the air again, blustering about matters he doesn't understand and ruining my good opinion of him.

He used to be an exuberant presenter of children's TV shows about maths and science, and is fondly remembered by nerdy types of a certain age:



But he has turned cranky in his old age. He said today that "Sammy Wilson is right."

"People are talking about a carbon footprint. Carbon dioxide is half as heavy as air again. It falls to the ground and it feeds the plants. A tree is made of CO2, it puts the oxygen back into the atmosphere and takes the carbon. 85% of every tree is CO2...
When you're talking about CO2 you're helping the plants, you could say you're greening the planet."

I think that here, Johnny has employed the logical fallacy known as the WTF? fallacy.



But he goes on (and on and on) and eventually, near the end of the interview, he gets to the "dangers of scientific consensus." He even has examples, 100 years ago, so Johnny says, all the scientists agreed about eugenics. I think he's trying to make the point that we're more enlightened now and have moved on from those bad old days, something I'm not so sure about. He also mentions how in Darwin's day, the consensus was against him. But he neglects to mention that the science consensus changed to adopt the new ideas when they were explained, understood and backed up by huge amounts of evidence. Does Johnny really think that scientific consensus is always dangerous? What about our ideas on gravity, germ theory, what about consensus on units of measurement? What a ridiculous argument.

Silly old duffer. And why on earth has he been asked to come on to the programme to talk about climate change? Is it really reasonable for the BBC to allow this man 7 minutes to talk a load of old nonsense, just because he was once a wacky kind of kids TV presenter?

DUP Numpties Dragging us Back to the Stone Age

SO we've already had young Sammy Wilson, Minster for the Environment in the parliament of this peculiar and fought over minuscule corner of our planet, a climate change denialist, block a UK government commissioned TV ad advising people how to reduce consumption and CO2 emissions from their homes.
There's a Royal Society's guide he'd be well advised to read.

Last year the DUP MP Iris Robinson promoted her own brand of bigotry to the world.

Today we hear again from Mervyn Storey, fellow DUP member who not only believes that this whole universe is about 6000 years old, but that it was all put together in just 6 days.

Now the man can believe what he wants as long as he doesn't interfere with my or my children's right to enjoy life free from his fairy tales. But here's the problem; little Mervyn (look at his wee Bash Street Kids face, the tyke!) is threatening the Ulster Museum with legal action if it doesn't represent his fabulous tale alongside its planned exhibition on evolution when it reopens later this year after undergoing a major refurbishment. Mervyn thinks that because he's not the only person living here who believes his astonishing 6 day tale, that he can use equality legislation to force the museum to show nonsense alongside evidence based information! Yes, I know... Worse still, this man chairs the NI education committee. Once again, I'm glad to home-educate.

Walter the Softy Mervyn told the Guardian,

"In the past, when I have written to the museum about necessity to show the public an alternative to Darwin's theory (and let's stress it is still only a theory), they have been quite dismissive."

Argh! He used the "only a theory" thing! From Understanding Evolution, a site Mervyn would learn much from,

"Scientific theories are explanations that are based on lines of evidence, enable valid predictions, and have been tested in many ways. In contrast, there is also a popular definition of theory — a "guess" or "hunch." These conflicting definitions often cause unnecessary confusion about evolution."

In the Guardian article Mervyn attempts to smear Charles Darwin with accusations of racism, when others have recently shown that he was in part motivated by anti-slavery principles,

"In this politically correct society we live in today, if Darwin expressed those views about other peoples of the world now he would not be put on any pedestal."

Asked if humans evolved from monkeys, Storey said: "Certainly not, and there are plenty of other people in this society who don't believe it either."

The chairman of the education committee at the Northern Ireland Assembly said: "I am not against the museum or anywhere else promoting Darwin's theory, but I think it would be in the public's interest to give them an alternative theory as well.

"We are currently because of the anniversary being bombarded with Darwin's theory but there are others in the scientific world who question that thesis and their voices should be heard in publicly funded institutions like the museum."

Darwin may have dispassionately dismissed some peoples as savages in one of his books, which wrong as that is, must be seen in light of the prevailing attitudes of his time and class.

Moreover, if Mervyn reckons only those with politically correct views by today's standards should be on pedestals, he should hire a truck to knock down most of the public statues in this province...and sack many of his party colleagues.

I am looking forward to the Ulster Museum's reopening. It was a fusty but fun place to visit before, and I'm sure after it's make-over, it will be even better. No doubt we will visit often as part of our learning voyage, but I don't want to have to negotiate frankly incorrect exhibitions in a place of learning and science.

Praise be then that the museum has pledged to do the right thing and will,

"house galleries and exhibitions of international significance interpreted in line with excellent scholarship and research. Within the permanent science galleries we will explain the conventional scientific theories internationally accepted by scholars and scientists to describe life on earth from the earliest evidence of fossils. This is consistent with approaches taken by museums of renown across the world." [emphasis mine.]

Boo to backwards pulling politicians, hooray for well run museums.

Action for Children abolish odious ad early

The monster was saddened by his premature dismissal.

Something smells good today.

Our coalition of bloggers, Facebook users, disability organisations and exceedingly obliging autism professionals, have partially succeeded. Action for Children had previously expressed their intention to air the monstrous autism ad on television until February 15 in emails to Barbara Jacobs and to Mike Stanton:

"Action for Children is a major provider of services for disabled children, including some with autism. We have other significant areas of work as well, and are a leading charity working with over 178,000 of the most vulnerable children, young people and their family members.

The advert will be running until the 15th February. If you would like to further your complaint or concerns about our advertisements then you can do this by contacting the Advertising Standards Authority at www.asa.org.uk They will look in to your complaint and if your concerns are upheld then we will be instructed to change or remove the advertising." (my emphasis)

But they announced yesterday that it shall now end early on February 8. This capitulation to the huge wave of protest, bolstered by over TWO THOUSAND people joining the "Let's stop "Action for Children" demonising autistic children" Facebook group I created less than a fortnight ago, can be found on their blog:

"Thanks very much to everybody who has commented on and contacted us about Dan's story.

We had always scheduled the advertising campaign to finish on 8 February and so Sunday will be the last day that the advert runs. I wanted to let everyone who is interested know that we have genuinely listened to the different perspectives that have been expressed. We have been and will continue to take these views into account and learn the lessons as we go along. We do appreciate that people feel strongly about the areas in which we work - as do we - and it's essential that we listen to these views." (my emphasis)

It's funny that they should say this. When you read the response Action for Children have given to every one of us who complained to them, it's clear that apart from a mix up about how they chose to present "Dan's" part in the creative process (did he draw the pictures or did he just approve the ad?) they have not listened to our carefully worded and detailed concerns. We've spoken of the damage it will do to the self esteem of autistic people, how it adds to the false, damaging rhetoric about autism and perpetuates the myth of autism as a shell, hence playing into the hand of the charlatans who offer false cures that release the "normal" child trapped inside the "autism monster."

Perhaps they will now realise though, that there are lessons they must learn from what has happened. I hope so.

Of course this doesn't end here. The ad is still on their website and YouTube channel. They had intended to run a postcard campaign which would use images from the Dan slide show, and there have been ads in newspapers and posters on the London Underground. The Advertising Standards Agency have yet to make a decision on the complaints they received about the ad. If anyone wants to upload their own complaint, email me for a copy of my "5 minute guide to complaining to the ASA."

Like PETA and their laughable "got autism" billboards and NYU's pathetic "ransom notes" Action for Children are realising that you don't mess with the autistic community and their allies.

Action for Children: arrant hypocrisy

I've been reading a document that is full of excellent advice on how to portray children in film and photographs (PDF link). According to the authors, images used in publicity material must portray a:

"A positive message – Children are at the centre of everything we do, and we know for certain that children want to be portrayed in a positive way in the media. There is no point in fighting for children’s rights, if we then undermine this work, by using imagery that they will find offensive. This is in fact one of our organisation’s pledges."

Before I share more of the sensitive and considerate advice contained in this document, I will reveal that the organisation who have pledged that they will not use offensive imagery as it undermines efforts to effect children's rights, is...Action for Children.

The hypocrisy this document has uncovered is astonishing, as the following few exerts demonstrate:

"It is essential that we represent them [children] with dignity, accuracy and fairness."

Screenshot of Action for Children TV ad.

"...use positive imagery that does not exploit children and young people."

Screenshot of Action for Children TV ad.

There is guidance on how to represent children who cannot be photographed due to legal restrictions:

"Creative Services also have a large library of real Service User’s art, which can be another very effective way to give a feeling of the real person, when you can’t show their picture.

Always remember though to only use the art in a genuine context. Say, if you’re talking about an art event, or if you’re talking about the feelings of children in a particular area Action for Children work in."

While Dan's art may (or may not, it's hard to know given the conflicting stories AFC told those of us who complained) have been used in the ad, it was used in a way which negates all the other advice on this document. And just who drew the picture of a little girl struggling to hold the massive heart "burden" placed on her, as the "Nicola" ad makes out, by having a disabled mother? The woman who narrates that ad is in her twenties now.

But Action for Children have yet more tips of portraying children in a sensitive manner:

"We should aim to move beyond stereotypes of children passively receiving services and aim to portray, for example, disabled children involved in activities.
Remember we’re called Action for Children.

This is particularly important if a photograph of a disabled child or young person is being used in isolation. Care should always be taken to ensure that any impact on the children is positive. Disabled children and young people rarely see images of themselves published, so any photograph of them may have a profound effect on their self-image."

Too right! I've heard too many stories of autistic children disturbed by how people like them are depicted in the AFC Dan ad.

The chasm of difference between their stated standards and what they've actually done with their first ever TV ad, is utterly breath taking.

"Action for Children works fearlessly in the most difficult and challenging areas relating to children. We are not afraid of any issue, and know better than anyone the seriousness of the subjects we are dealing with. Because of this, and because we aim to give our service users a voice, all imagery should be authentic and sincere. Use of gratuitous imagery should be avoided at all costs..."

Gratuitous imagery...like a big scary, hairy child-eating monster rampaging about and attacking all the normal people?

"Use of gratuitous imagery should be avoided at all costs..."
Screenshot of Action for Children TV ad.

More wise words from Action for Children on representation via illustrations:

...all images should be real rather than sensational, and should take into account the feelings of the people in them, and referred to by them. The best way to work this out is to consider the context of the image, (how the accompanying text works with it etc), and then use your common sense. If in doubt, ask yourself: “How would I feel if I were portrayed like that in a photograph?”

Real images, not sensational?! What excellent advice! And what a pity they ignored it totally when making these ads. I wonder who from Action for Children decided they'd feel just peachy to be portrayed as a monster when they approved the Dan ad?

Did Action for Children consider context when they superimposed images of a rampaging, child entrapping monster with narration saying, "My parents sought out help with my autism because it was becoming a pain in the bum"? Were the feelings of people referred to, that is, autistic people, taken into account when AFC decided to put this shockingly bad ad out? Are they considering the feelings of these people when despite many, many letters of protest, comments on their own YouTube channel and the 1665 people who joined the Facebook group protesting the ad, they keep on playing on televisions in the UK? (I'm well aware that AFC are watching the group and the blogs, their ISP has been all over this blog in the past few days, always following Facebook links to get here.)

Action for Children, whoever is reading this, please, do the right thing, follow your own excellent guidelines for portraying children and young people in an ethical, sensitive, respectful and honest manner, and get this gutter level, shock and awe, false, sensationalist and damaging ad taken off our televisions.

Tony Attwood slams Action for Children ad

Mike Stanton has posted an email on his blog, which gives the response of Tony Attwood, a well known researcher on autism to the Action for Children ad. We have been given permission to share what he had to say:

“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.”

There is no mistaking it.


There is no way Action for Children can wriggle out of this and try to fob off their damaging mistake by claiming that they were just letting Dan tell his story and saying that when we complain, we're being nasty to the poor autistic boy. This is precisely what they imply in their stock email, and what the few people who have tried to defend the ad on YouTube and on our Facebook group, have said.

I emailed the NAS last week about the ad, as did many other people. They have contacted Action for Children and explained how so many of their members are objecting to the ad, but unfortunately even they were sent the same pathetic excuses as all the rest of us.

I'm well aware that the ASA is receiving loads of complaints about the ad. There is also a Facebook group protesting Action for Children's MS ad. The ASA has been contacted by many about this too.

I hope that Action for Children will learn from all of this. They must commit to involving advocates from the groups they seek to represent. They must ensure that they are not misrepresenting people, or perpetuating dangerous stereotypes. As the slogan goes, nothing about us without us.

ACtion for Children: a new film about Dan

I made a video using Bev's improved illustrations.



The Action for Children campaign isn't merely offensive. After all, no one has the right not to be offended. The problem is that it misrepresents autism, portraying it as an external monster to be defeated. The problem is the damage it will do to the self esteem of young autistic people in particular. The problem is the way in which this ad contributes to the mass of misinformation and prejudiced, negative rhetoric about autism in the media and wider society. The problem is, parents of recently diagnosed children will see this advertisement and worry unnecessarily about their children and may be more willing to fall for the false promises of the shamans selling dangerous and expensive, quack autism "treatments."

The comments on our Facebook group, Let's stop "Action for Children" demonising autistic children and on the YouTube page for the "Dan film", speak of the distress and worry this ad is causing autistic people and families with autistic members.

Action for Children seem to have opted to jump on the autism bandwagon, thinking that autism always gets the media interest they seek. They have used the problems of autistic children to raise their profile, but have misrepresented the condition. This is utterly unethical.

As well as the Facebook group, the Autistic Self Advocacy Network have put together an action alert to send a message to Action for Children, their supporter in Parliament, MP Hilary Armstrong and the British Fundraising Standards Board. Unfortunately I wasn't able to sign it as so far it's set up to accept addresses from US residents only. No doubt that will be fixed soon .

Please keep this is mind. Every airing of that ad furthers the potential for damage.

Action for Children Rotten Campaign

I had a reply from Gary Day of Action for Children to my letter of complaint regarding their campaign:

"Thank you for your recent e-mail concerning our current advertising
campaign. I am sorry that the current 'Dan' TV advert has upset you this
was never our intention.

Action for Children's new advert focuses on how we as a charity help to transform the lives of the most vulnerable children and young people. It is focussed on the real story of Dan who has autism. The advert is the second of three, which all take real and different stories from children and young people across our different areas of work.

As a charity we're committed to giving vulnerable children and young people a voice about issues that affect them-and this approach was central to the way we designed and produced the ads, and why we feature real voices and real experiences and are highlighting the story of a child suffering with autism.

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.

Of course we would not intend to cause any distress to anyone who has autism or parents who care for a child with it and hope instead that people will understand that there are organisations like us who are there to give support to parents and children who have the condition, should they need it.

We also hope that through raising the profile of children who have autism and those who look after them, we can help to give a voice to those who are in this situation.

If you would like to complain about our advertisements then you can do this by contacting the Advertising Standards Authority at www.asa.org.uk. They will look in to your complaint and if your concerns are upheld then we will be instructed to change or remove the advert.

Once again I can only apologise for causing you upset and hope I have been able to explain why we are currently airing this advert on TV in its current form.

Yours sincerely

Gary Day
Head of Supporter Care"

I don't think this even approaches a reasonable defence of this revolting advertisement and campaign. I didn't write because I'm upset or offended. It does matter that you will cause distress to autistic people. If you care about that, then do the decent thing and remove the advertisement. Have a look at what Bev has done with the illustrations on her blog.

Though I hope Dan benefited financially as much as ad agency Baby Creative, and "director Dan Sumich, who worked on the David Beckham "Impossible is Nothing" ad campaign for Adidas" that the ad tells his story makes it no less objectionable and disturbing.

Dan's story is tragic. He's blaming himself for the problems he faces and has been taught to regard his autism as a monster to be defeated and that he would be better off acting as non-autistic as possible.

You have portrayed a dangerous and damaging view of autism. This ad will hurt vulnerable young autistic people. It will also reinforce the prejudice that already exists in wider society against autistic people.

The only way you can make this right is the cancel the ad and the web campaign in their current forms. Next time you want to use the problems of autistic children to sell your charity, please seek out the superior knowledge of autistic self-advocate organisations and mainstream autism charities like the NAS.

The Guardian has an article on this campaign:

"Our values of passion, hope and equality continue throughout this campaign," said Polly Neate, executive director of public affairs and communications at AFC. "We deliberately avoid the more traditional charity methods of playing on guilt or shock. In all our work and now our advertising, the focus is on positive outcomes for the most vulnerable children."

How can Polly Neate think the autism ad is not playing on guilt or shock? Hasn't she watched it yet?

I have started a Facebook group called Let's Stop "Action for Children" demonising autistic children. Please join and invite your friends.

We managed to get rid of the NYU "ransom notes" advertisements. We can do it here too if we work together.

Blog posts on the campaign:

• Action for Autism: Action for Children or action against autistic children?
• Asperger Square 8: Dan: The Real Story
• THE NEW REPUBLIC: Autistic Monster Dan (Cured)
• Biodiverse Resistance: Monsters and changelings and charity advertising, oh my
• Whose Planet Is It Anyway?: Destroying the Intolerance Monster
• Andrea's Buzzing About: You Can't
• Existence is Wonderful: The Action for Children Autism Ad: Not Just About The Monster
• Abnormaldiversity: Dan and the Monster Autism
• A gift from god: Action for Children demonise autism
• Six Home Ed in Kent: Action For Children? Don't make me laugh

Please leave a comment if there are any others.

Prenatal tests and curing autism in The Guardian

Checking the Guardian late last night, I saw a glut of autism headlines. The first is New research brings autism screening closer to reality.

Baron-Cohen and his team have just published on their study tracking 250 children, all of whom had amniotic fluid testosterone levels tested prenatally. These non-autistic children's consequent development has been studied until they were 8 years old. I have not managed to source the study paper but on the ARC website I read:

So far we have only conducted studies of typical individual differences and found that foetal testosterone is inversely associated with social development, language development, and empathy; and that foetal testosterone is positively associated with systemizing and number of autistic traits.

So, based on this, the papers are shouting about prenatal screening tests? Baron-Cohen's testosterone theory of autism is not well established or universally accepted. Baron-Cohen seems to accept that the current male/female ratio of autism diagnosis represents the real numbers while other researchers think that women are underdiagnosed.

Moreover, what this study has measured is a few autistic "traits" which is not the same thing as autism. These are just ways of being that vary in the population, it's possible to be a bit less chatty and not much of a party animal and not be autistic! And I wish they'd drop that old canard about autism and reduced empathy. Where is that coming from? It's a dangerous, damaging delusion.

So there's no proven link between high fetal environment testosterone levels and autism, but even if there was, there's no way of telling how each affected child would develop.

Professor Simon Baron-Cohen, director of the research team, told the Guardian that it is now time to start considering where society stands on the issue.

"If there was a prenatal test for autism, would this be desirable? What would we lose if children with autistic spectrum disorder were eliminated from the population?" he said. "We should start debating this. There is a test for Down's syndrome and that is legal and parents exercise their right to choose termination, but autism is often linked with talent. It is a different kind of condition."

The research could, equally controversially, open the way for treatment, he said. "We could do something about it. Some researchers or drug companies might see this as an opportunity to develop a pre-natal treatment. There are drugs that block testosterone. But whether we'd want to would be a different matter."

Why is it necessary to find a way to prevent people who perceive the world differently, people like my son, with all their strengths, problems, disabilities and talents from existing? Even if this theory was to lead to a prenatal screening tool, which I very much hope it doesn't as it would have little sensitivity and specificity, need we discuss the right of autistic people to be born? It's also irrelevant that autistic people can have special talents that benefit society and that if there was a way of telling if a child could grow up to be (sarcasm) a useful, clever autist or a wasteful, stupid autist with absolutely nothing to offer (/sarcasm) the test would be more useful. Heck, if everyone had to prove their usefulness to society to be allowed to exist, the world's population would take a big drop.

It is also very premature to be thinking about using this bit of research to work on curative techniques.

An NAS spokesperson says that currently gaining a diagnosis can take too long, and while better diagnostic tests would help speed that up:

"It is important to stress that everyone with autism has the potential to make a unique and valued contribution to society. It is not always the autism that is a problem. It is other people and a lack of services and support."

I can think of no reason save the chance to offer abortions, why a better diagnostic test has to be done prenatally.

The final few paragraphs quote Vivienne Nathanson, the head pf ethics at the BMA. These made me feel queasy. This is how the ethicist of a leading doctor's group puts it:

"The question, then, is are we comfortable with [testing] for a disorder which is life-limiting in terms of opportunities and experience, rather than life-ending?" she said.

"My guess is that society would look at it like Down's syndrome," she said. "There are people who wouldn't approve of terminations and people who would. If you talk to parents of people with autism, however much they love their children, they find it very difficult. They agonise over their child's limited life opportunities and some of them say it would have been better not to have had the child and some don't."

The more complicated ethical issue would be that of treatment in the womb, she said. "You get to the situation where you have a very great difficulty if families say we wouldn't want to be tested. As a society, do we accept that people can refuse tests when the outcome can make a difference to that unborn child?"

That final sentence sends chills up my spine: "As a society, do we accept that people can refuse tests when the outcome can make a difference to that unborn child?"
Is it a possibility that people will one day be forced to have these tests?

I also listened to the Guardian podcast by Mike Duran about this and I felt obliged to transcribe some of it. Health editor, Sarah Boseley is introduced and takes on the role of explaining the research. Here's some of what she had to say:

"...It might be possible to test the levels of testosterone around the growing fetus in the womb.
...
This is research done on NORMAL children, not autistic children...we all have some autistic traits; being LESS sociable, being LESS verbally agile, and perhaps LESS empathetic towards other people.
...
Autism spectrum disorder runs a LONG way from the development of MINOR difficult traits such as children not being very sociable and not being very verbally skilled which might lead to learning difficulties right through to people who probably can't lead a normal life outside of an institution, who can't communicate with anybody, who couldn't hold a conversation and somewhere around there also are some very interesting, very BRILLIANT people who perhaps become mathematicians or musicians. What you can't possible know if you have a prenatal test in the womb is what level of autism, what place on the autistic spectrum your child would have.

(My emphasis.)
Who briefed this woman and how can she speak such rubbish? Autistic people are either BRILLIANT or have to be stuck in institutions, unable to converse or communicate in any way!? Too many people have taken the idea of the autism spectrum and apply it rigidly as if it was a linear thing, with each autistic person falling somewhere along a line of "functioning" level, when it's much fuzzier than that. People are good at some things and bad at others, ability to cope varies with time and location, stress levels and accommodations available. A child could cope brilliantly at home but have severe difficulty at a badly optimised school. An adult may do well while at university but flounder in a certain job. Very few (most likely no) autistic people cannot communicate in any way whatsoever.

On the matter of causes of autism, she said:

"...it seems to be a combination of genes and the environment, we don't know what the environmental factors are. But a lot of genes are now being identified, over 100 of them so far, that do have some link with autism and it does look that if we can't have a prenatal test featuring testosterone then one day you may be able to do pre-implantation genetic diagnosis...and you would be able to identify an embryo that tended towards autism and again it could lead to a termination."

Shudder. At least she's not messing around with a story about how this is good news for autistic people as early warning can help parents prepare, no, it's all about getting rid of the damaged goods.

Duran then talks to Charlotte Moore, mum to 2 autistic sons. She says that she doesn't see autism as a disease that has to be eradicated and that the vast majority of autistic people can have a good quality of life provided certain accommodations are made, but these can be difficult to achieve. She says that in the hypothetical situation where pregnant mothers are told that their babies may be autistic, they should try to read about the condition. But she said, it would be hard for them as it's so complex and they have a short time to make their decision. Also, each person has to decided how they would cope with the situation themselves but they should speak to parents of autistic children about what their view is. But the short time available would not give the woman any picture of what her own life would be like. There was no mention of learning from individuals who are themselves autistic.

Duran then asked Moore a question that just shocked me, "Would it depend also on whether the child had other siblings because there are forms of autism which could put those siblings in danger if they manifest violence among other anti-social traits?"

Sweet mother of mercy this is the Guardian! Even for a devil's advocate question, that showed a disgusting level of ignorance, prejudice and callousness. If this guy's going to talk about autistic people, children even, as if they're anti-social sibling beaters (when I'd say it's far more likely that autistic people themselves are at a far higher risk of physical and emotional harm-I can look for evidence for that theory if needed) he will affect the public's perception of the condition and increase the fear and ignorance. Then it's a given that pregnant women will opt to abort the "monsters" they're carrying.

Is there a test to see if the child you're pregnant with will grow up to be a thief, an abuser, a drug dealer, a thug, a user, a murderer? Is autism so much more deserving of eradication than all these?

Thankfully Charlotte Moore says "It's too crude to say you shouldn't have an autistic child because it might damage your other children. I would just reject that."

Duran asks, "Do you welcome this test, doctors presumably would argue that armed with the facts you can prepare for any problems with what the National Autistic Society calls a serious, life-long, disabling condition?" Moore replies that it would be good as:

"most parents can't tell until the child is a toddler sometimes beyond [that s/he has autism] and what happens is that you waste a lot of time acting as if your child is not autistic and maybe making a lot of wrong choices about how, what you do with your child. Where if at least if you'd had the test when you were pregnant and you knew that your child was going to be autistic, then you would be better prepared..."

I don't agree. I want to see basic research on autism but with caveats. The NAS phrased it well:

The National Autistic Society (NAS) welcomes research into all areas which may further our understanding of autism, but it is vital that the information gained from any research is handled responsibly. The rationale for research into autism must always be to improve the well being of and increase the opportunities for people affected by the condition.

Michelle Dawson, is forever saying it and the message has yet to sink in: autistic people deserve to be benefit from and be protected by recognized standards of science and ethics. I look forward to the day this happens.

Prenatal testing and disability

There have been several articles in the UK media recently about prenatal testing and the number of children with Down Syndrome born each year. Some stories have suggested that an increase in the number of children born with Down syndrome, suggests that we're living in a more caring and accepting world, while others have criticised the interpretation of the data, suggesting that the percentage of fetuses with Down syndrome to be aborted has not changed.

Via Michelle Dawson's TMoB board, I discovered a couple of articles in the Times, one which disgusted me and one which I cheered. The first, by Minette Marrin, contains many outstandingly ignorant and prejudiced statements, like this:

I am convinced that it is a grave misfortune for babies to be born with Down’s or any comparably serious syndrome. It’s a misfortune for their parents and their siblings as well. Sad observations over decades have convinced me: a damaged baby is a damaged family, even now.

She goes on to preempt any disagreement with her views:

I resent the moral condescension of those who claim that people who think like me are not only wrong but hateful; there have been vicious attacks on me in the blogosphere by disability-lobby extremists. My point of view does not make me a heartless eugenicist.

I think that this article is hateful. I'm not sure that my saying so counts as a "vicious attack" nor that I'm a member of the terrifying "disability-lobby extremists". Watch out, they're coming to a town near you with their torches, pitchforks and calls for ramps, assistive communication devices and individualised education plans!

I don't think her views make her a heartless eugenicist, but they do display a belittlement of the value of disabled lives, and a inordinate emphasis on the difficulties faced by disabled people, as if non-disabled people enjoy a charmed, perfect, blissful existence. See this example of Ms Marrin's reasoning:

In a hyper-sexualised culture that worships bodily perfection, beauty and sexual success, adult life is also bound to be painful for people with Down’s.

Isn't she aware that many adults, even the non-disabled ones, have relationship problems and broken hearts and personal insecurities?

India Knight, also writing in the Times, issues a slap down. It's lovely. In response to Marrin's line:

...what more powerful “social reason” could there be for an abortion than the virtual certainty that the foetus would be condemned to a life of frustration, disappointment, dependence, serious illness and poverty, to the great sorrow and hardship of its family?

Ms Knight writes:

I like 'virtual certainty'. I mean, f*** science. Bugger medicine. Take your research and shove it. 'Virtual certainty', innit? No jaw-dropping medical advances taking place every year, dear me, no. Sure, your hole-in-the-heart baby - to pick one example at random - would have died not very long ago, and is now likely to lead a full and active life, heart fully repaired, as though nothing had happened. Life expectancy for people with Down's has doubled since the 1980s - but hey. Let's not nitpick. Or, you know, believe in the fundamental decency of human beings, or in the possibility of finding joy - and pride, and strength - in unexpected places.

Applause from me! And to another one fighting the ignorance, Nick, dad to Jacob and his siblings, who tackled some blogger's assertion that people proceeding with a pregnancy when they know the baby will be disabled, view their children as pets. Nick responded:

If you are going to approach a subject of such emotive power as the right for people who have a chromosomal difference to exist, it is a noble idea to invest your strongly held opinion with first-hand experience. Go meet some downsies. Get to know them. And possibly when you’re at it meet a few blind people. They’ve been holding us back for ages too. The autistic ones are no better. And cancer sufferers are an insane drain on society as a whole. Idea: burn the hospitals altogether, and the clinics, and shut down any factories that make wheelchairs or crutches or other such resource-squandering gimmicks. Let the bastards with heart issues die off. The car-crash victims probably did it to themselves, so just pull the plug now and cut down on the greenhouse gas. Double win!!

And when they’re all conveniently out of the way we’ll sit down, you, me and Dr Mengele, and we’ll really have it all to ourselves. Because there won’t be anyone else left.

I came across another wonderful article from the F word blog. The author, Victoria Al-Sharqi, is a disabled woman who declines naming her conditions because, as she says, "if you can’t label me, you can’t define me and you can’t write me off." She writes:

Disabled people who do oppose selective abortion are usually dismissed as unqualified to speak about the topic. I lose count of the number of times that I have been told that the ‘seriously handicapped’ clause does not apply to People Like Me. It applies to those poor people who can’t speak or even wipe their own bottoms, let alone appreciate life for what it is. I just don’t understand what it means to be severely disabled; I’m blinded by the relative mildness of my particular handicaps. But fear not, enlightenment is at hand. While I may not understand severe disability, there are plenty of able-bodied people who do, so why don’t I just sit back and leave these difficult questions to the real experts?

I think that every autistic person I know who has written publicly about autism and/or disability issues, has been told the same.

I wrote about the development of a prenatal test for autism and selective abortion a few years ago here which can be summarised by this excerpt:

Prenatal testing puts pressure on parents, mothers in particular, to reject a specific child. This is a whole different issue from that facing women who are pregnant and do not want any child at that time. Woman are getting the message that they would be irresponsible to chose to give birth to a child they know to be disabled. These children are seen as 'drains on society' leading 'empty and pain-filled lives'. They are said to 'cost the state too much to care for them'. This is eugenics. It is anti-feminist.

Yesterday, I read another opinion on all this. A GP blogs about a pregnant patient of his who has discovered that her fetus has Down syndrome, who wants an abortion and who "feels particularly bad about it because she too has read and listened to the recent ill-informed media barrage which alleges that more and more parents of Down’s babies are deciding not to have abortions."

He's critical too of the Down's Syndrome Society's chief executive for suggesting that the higher birth rate of Downs babies "seems to show that parents are thinking more carefully before opting for termination."

Dr Crippen writes:

The Down’s Syndrome Association live in the same cosy world of politically correct half-truths as the para-olympics. Oh! Dear me, how dare you suggest that watching people play tennis in wheelchairs is not just as exciting as watching Wimbledon? How dare you suggest that Down’s Syndrome sufferers cannot lead a completely normal life?

Oh the sarcasm kills!

The post contains other points I take issue with and I wrote about some of them in my comment on the blog. Michelle Dawson also criticised the post but her concerns were written off and she was labelled as "getting emotional, silly and abusive". The majority of the comments there just make me sad, but not as much as seeing Ben Goldacre, writer of the fantastic Bad Science blog, for whom I have great respect, linking to Dr Crippen's blog post on his own MiniBlog with the description, "Some Crippen realities on Downs. It really is a bit scumbaggy to make parents contemplating a termination feel guilty"

Does Dr Goldacre really believe that we shouldn't discuss these issues for fear of making prospective parents feel guilty? Aren't the lives and views of a whole group of people, deemed by society to have lives that are better not lived, not important at all? Is this post "scumbaggy"? Isn't it worth pointing out the way the NHS screening program works, as explained here:

The NHS' so-called 'best practice' information leaflet devotes less than 3 pages to informing parents about Down syndrome. Most of this limited information is about maternal age and chromosomes rather than people. People who have Down syndrome are not featured talking about how they view their lives. Nor are their families. There are no photographs of people who have Down syndrome. This 'best practice' guidance then devotes 12 pages to describing the screening and diagnostic process in detail. The message? On balance, parents should be far more interested in learning about the screening process than the condition actually being screened for.

Is that post also "scumbaggy"? Is it wrong to suggest that changing attitudes, better education and medical care, and more interaction with actual disabled people may be leading some people to either decline prenatal screening for disabilities or to elect to continue with a pregnancy despite knowing the child is affected?

I find many of the comments on these articles and blogs disturbing in their libertarian fuck you attitude. There are many who resent the welfare state, and laws to make society more accommodating of disabled people. Dave Hingsburger had a poll on his blog recently. Like the majority of those who voted, I answered the question "the most frustrating thing about disabilities is..." with "the attitude of others." Is it any wonder?

Politics of the people

People can change things. America has shown us so. I stayed up really late on Tuesday night/Wednesday morning to watch the results of the US presidential elections, enjoying the company of some fellow bloggers. I was delighted with the result. From what I've seen and read about the candidates, Obama is by far the better in his policies, aims and intentions. People have chosen the candidate who is clever, accomplished and well organised. His campaign was fantastic especially when compared to the nastiness of McCain's. I'm glad there will be no more McCain "my friend" speeches nor any of his nonsense about autism, and I am glad the majority of Americans showed their opposition to the global screw ups his party have made, and that awful Palin woman.

It's obviously wonderful to have an African American family taking up residence in the White House. I think that people all over the world who are of a minority race in their home country, will be happy with this. I know Gordon has been deeply affected.

I listened to Obama's victory speech live and warmed to his inclusive address to people of all racial backgrounds, to gay and straight people, disabled and non-disabled. How about that?!

But, closer to home, the Irish government has just announced their disgusting decision to scrap HPV vaccines for teenage girls due to budget shortfalls. Even if times are hard, this is a terrible decision and is a real let down. The HPV vaccine is the only medicine yet developed that acts as an effective preventative measure against a form of cancer. I live in Northern Ireland so my own daughter will still be vaccinated when she's old enough, but what about all her cousins? I have 5 wonderful nieces living in the Republic, they all deserve this protection too.

"An angry person" by Duncan. It's how this decision makes me feel.

Via Red Mum I read that people are being encouraged to write to Mary Harney, Minister for Health, telling her how they feel and attaching a photo of their daughter (if they have one). We've seen that when enough people are motivated to make a change, it can happen. Lets see if the Irish people can effect this small but important change.

It's a shame about California and Prop 8 though.

"I exist" in Northern Ireland

The National Autistic Society launched their "I exist" campaign for recognition of the needs and views of adult autistic people at Stormont yesterday.

For my first time at the parliament building, the sky was startlingly blue as I made my way through the security posts to the revolving doors, location for some of the most cutting edge performance art the world has seen.


The launch was held in the prosaically named Long Gallery, and was so well attended that there was standing room only during the presentations. I was hovering around looking a bit lost, according to the two kind souls who offered me a seat beside them near the front. I ended up sitting two rows behind the four MLAs and right next to Mark Lever, the NAS chief executive with whom I had a brief chat.

First to speak were the politicians. I took notes as they spoke so can share my perceptions, though none of what follows is necessarily totally accurate. This is no Hansard report. I'll put my own thoughts in italics.

John McCallister (UUP) wishes for politicians from all the parties to work together on these issues. He acknowledges there is too little known about autism and that the state needs to work on the delivery of services to support adults. He called for the release of funds to support human dignity.

Iris Robinson (DUP) spoke as the Chair of the Health Committee. She said she's been interested in supporting people with autism for many years and visited the USA in 2007 as part of a cross party group with PAPA to find ways to meet their needs.
She said there's a need to get Statements earlier for children and mentioned that autism is diagnosed in the USA in a different way using a £1 million set of equipment called a MEG scanner.

(I looked up MEG scanners today since I'd never heard of them and they sound like a cool bit of kit, with SQID detectors and stuff that excites the usually dormant, medical-physicist parts of me.)

So back to Iris; she reckoned the high cost of a MEG scanner is justified by the high number of children with autism in NI. It would soon pay for itself as it could be used for people with epilepsy or who have had strokes or brain injuries as well as people with autism.
She finished by saying that we need to have a strong and inclusive voice and that education and social needs are especially important.

(I don't know how MEG scanners are being used to diagnose autism. They may play an important part in understanding he condition but I don't know if the limited funds available should be used to pay for one here when the need for basic support services in education, health, accommodation and employment is so great and underfunded. Also, is there really a centre of excellence in neuroscience where such a device could be put to best use, in NI?
Also, there was nothing in this speech about the needs of adults.)

Carmel Hanna (SDLP) spoke of the need to educate all of us to end confusion on autism issues, and said that we're all learning to listen to carers and parents about what it is like to live with autism. She said that the majority of adults with autism live at home with their parents which can cause stress and isolation for the parents, who can benefit from exchanging views with others in the same situation. She also told of the autism families who worry and dread the future and called for further training for health professionals. She said that the SDLP meets many parents and that they have a bigger lobby, and worried that older autistic people fall through the cracks in the services available and their physical and mental health can suffer, as can that of carers affected. She finished by calling for consolidation of services and said that her door is open to those needing support and help.
(The views, needs and worries of autistic people themselves were given much less prominence than the concerns of parents.)

Michelle O'Neil (Sinn Fein) was unable to attend due to a family funeral, and wanted to convey her support for the campaign.

Keiran McCarthy (Alliance Party) spoke last and said that he had little to add to what the previous speakers had expressed. But he added that autistic people need support, especially from the departments of health, education, employment and transport but from every other department as well so they can receive the same facilities as everyone else. He complained that various departments shy away from a joined-up approach meaning people lose out. He believes that early diagnosis of the condition would highlight the degree of spectrum (not sure he used the word spectrum here) to work out what provision is needed.
He wished we could do more to ensure all people enjoy a fulfilling and exciting life like you and me.
He finished by quoting from the report (showing he at least read some of it) that all are extremely valued and wanted people.
"I commit to ensure this."

Mark Lever showed a short campaign film then spoke briefly about the aims of the campaign. He told how "low level" (and presumably cheap) support services have made a huge difference in the lives of some people. He said that gaining services is often a battle when it should be a right. He believes that if we can make people aware of autism and its impact, then more people would be keen to act to improve things.

He was followed by Regina Cox who highlighted the findings of the NI report showing that many people haven't got a clue about autism. (This is no surprise.)

Regina then introduced Jenny McCleave, a young, autistic woman who read a few extracts from a short book she wrote for her family. (I have no notes for the next two speakers as I was so engaged by them that I forgot to write anything down.) Her contribution was incredibly moving. She spoke clearly and simply about her struggles to be heard and taken seriously. She wasn't diagnosed as autistic until she was (I think) 18 despite telling those around her for years that she knew she was autistic from the descriptions she read of the condition. She was always told, no Jenny, there's something wrong with you but it's not that. She was so frustrated and isolated that she considered suicide, and her diagnosis was a relief and vindication of what she'd known for years.

She spoke too about love and how people like her are capable of love even if they don't show it in normal ways. I, like the women sitting next to me, had tears in my eyes by the end of her short presentation. I felt so for the unnecessary suffering she's undergone, and wondered again how it is that people are so blasé in claiming that autistic people lack empathy when the truth is often the opposite.

Another autistic speaker called Rob Devlin spoke for a time. Again he described the difficulties he's faced as a child, the bullying and awful time he'd had a various special schools. His diagnosis didn't come until he was 14. He now lives at home and aged 29, is trying to get work as a voice-over artist. (He does have a wonderful voice.)

The event ended with a talk from Geraldine Banner, described on the programme as, mother of Noel, an adult with autism.

As she spoke, a huge photo of her son was displayed on the screen. I don't know if it was a particularly unflattering photo of the young man, but it felt a bit exploitative to me.

She started her talk with the words, "autism is a life sentence with no parole" (which jolted me, I thought it was a disrespectful choice of words) and said it affected the family and extended family. She said that her son is severely autistic and non-verbal. He was at a special school but the placement failed when he was about 13. She contacted the Camphill school near Belfast but they didn't ahve a place for him so they got him a place in a Camphill school in Scotland. He was there for about 8 months but that too failed, "due to his autism". She found out about another residential school in Scotland and visited it, was impressed and determnied to have him go there. She drove back to NI from Scotland with her very distressed son in the back seat, went to see a psychiatrist in Derry and though she said the doctor advised against it, had her son admitted to hospital (I presume she meant the psychiatric hospital) while she got her MP to secure funding for him to go to the residential school in Scotland. He had a difficult start and displayed self-injurious behaviour and aggression towards the staff and his peers. But he battled through adolescence and recently celebrated his 21st birthday with family and friends and it was a fantastic experience.

She wondered why there are no services available in Northern Ireland.

So ended the event.

I spoke for a few minutes to the chief executive, continuing the conversation we'd started before the presentation when I'd asked if he knew if any adult autistics would be there and I asked if they thought about showing videos by other self-advocates. He told me about various videos he'd seen and other pieces of art that represented the voice of people who wouldn't be comfortable enough to speak to a crowd or engage directly in events like this one. I asked him if he'd seen Mike Stanton's presentation at the NAS conference about the Autism Hub, he had and he commended Mike's work.

I didn't get a chance to speak with anyone else in any detail.

Before I left to pick the children up from their grandmother's, I joined a tour of the building led by the UUP MLA. We headed into the debating chamber where DUP MP Sammy Wilson was talking to a group of school children (who looked utterly bored). He talked about the role of the speaker and how debates work and asked if anyone had a question. I wanted to ask, Mr Wilson, as Minister for the Environment, have you any evidence for saying, "I am not convinced and I don’t think that there is any firm evidence to show that all of that climate change is due to CO2 emissions." Further, is there any chance you lot will be getting back to work any time soon?
But I held my tongue.

So that's what happened. I have lots of thoughts about it all, some good, some bad. I think the aims of the campaign are sound and support them fully, but I worry that the ends don't always justify the means and there's still a lot to do to get people, even those presenting at an autism conference, to think differently about autism.

NAS "I exist" campaign in NI

The UK autism charity, the NAS, has been running a series of campaigns aimed at improving the lives of autistic people and increasing people's understanding of the condition.

I exist, is a campaign specifically designed to highlight the needs and concerns of autistic adults, who are so often overlooked whenever autism is discussed in the mainstream media.

The campaign has been running for a while in England and claims some success. It will be launched in Northern Ireland later this month in an event at Parliament Buildings in Stormont. I received an invite to attend, though I'm not sure why. I will go. It'll be interesting to have a look inside the parliament building and to participate in this kind of mainstream charity campaigning, both for the first time ever. I hope that the majority of those present or represented will be autistic adults, rather than parents of young children like myself.

I have limited experience of greeting and interacting with those whose views I detest. Among the politicians hosting the event, is Mrs Iris Robinson, known for her homophobic views. I wonder if she also favours the discrimination of disabled people or only for gay people?

However I will be on my best behaviour, and have no idea how many people will be there and just who I will get a chance to talk with or whether it will be more of a sit down and listen to the speakers type of event.

Whatever happens, this NAS campaign is an important one and one I fully support. There's a real need for a campaign to improve life for autistic adults here.