23 Oct 2008

Make a splash

Image via stock.xchng

Tuesday is swim day. We go at lunch time when the learner pool isn't in use by school groups.

It's not so long since Thomas was nervous and clung to me in the pool, tolerating only short periods in the water. Now he wears goggles and swims over and under with true dedication and joy. I can usually manage to give him one helpful tip per week to improve his doggy paddling, bum in the air, legs splayed swimming style, but he tells me he doesn't need my help and he can do it himself. He's right, he is getting about well enough and is getting better and stronger each week.

Lady takes my advice slightly better and she swims now in a sleek, smooth manner, her long limbs pulling through the water. We raced a length last week, and she kept up with me, though I was looking backwards every second stroke to check on Duncan.

Duncan just loves it and grins the whole time we're there, even enjoying the showers after. He has me pull him as he holds a float. I try to do a life saving stroke as I drag him along but he's the wriggliest and bossiest rescue subject ever, and insists that I swim faster and go from left to right. I tell you, I certainly get a work out anyway.

One of Duncan's favourite things now is watching people go off the diving board in the adjacent diving pool, and the bigger the person, the better the splash. Last week, a very large man made him very happy by repeatedly plummeting off the board, creating gratifyingly gigantic turbulence in the pool. Duncan couldn't withhold a little shout of glee each time the big fella went off.

He emulates in his own small scale way, jumping from the poolside very carefully so as not to make a big splash or to go underwater. Sometimes he enacts a little pantomime of stretches and toe touching before he goes in, muttering the script from a relevant episode of Tommy Zoom.

At 1.20 a school group arrives and we retire to the baby pool for a few minutes to watch them. Duncan likes it when they all sit on the side splashing their legs back and forth creating lots of noise and white water. He joins in from where he sits. About thirty school children are crammed into a pool which we four usually have had to ourselves for the previous 45 minutes. Lady can't help feeling a bit sorry for them as they are restricted to a narrow strip about 10m across and must follow instructions to the letter.

Ah the delights and freedom of home education.
Smug...us? Just a bit.

20 Oct 2008

Denis Leary- too funny!!!

Omigod did you hear about how funny Denis Leary is? I know he's been like, really boring and all for the past few years, playing serious drama roles and providing a voice for one of my own little moron's favourite kiddie films. So it's just marvellous to see him try to recapture his rebellious youth when he did brave and edgy shows like No cure for cancer in which he went on stage and drank beer, smoked and bawled out a litany of respectable targets in a most amusing and radical manner.

I suppose it's a mid life crisis thing, and he wants people to remember him at his Bill Hicks impersonating best, so he's written a book and it sounds like the most amazing, riotous, revolutionary tome. It's called "Why we suck" and again he gives 'em hell, lancing the inflated egos of those who put themselves in the spotlight, people like Hilary Clinton, Dr Phil and, er, those pesky disabled children.

This great comedic talent wrote:
There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a fuck what these crackerjack whack jobs tell you - yer kid is NOT autistic. He's just stupid. Or lazy. Or both.
Diego the sabre tooth tiger from Ice Age with a self-portrait of Duncan.

Try not to die laughing just now.

When this short exert was publicised (by whom?) many people complained, among them parents with autistic children. Sadly many of the complaints tended to be like this: "How can you laugh at autism, it's devastating and a tragedy?! Just come live in my house for a day and see how it's nothing to joke at!!"

Bleuch. The problem isn't laughing at autism, it's just how pathetic and unfunny Leary has been.

Then Leary himself went and got all offended at people using their right to express their distaste at his words, by saying that the protesters hadn't even read the book and the quote was taken out of context:
...I not only support the current rational approaches to the diagnoses and treatment of real autism but have witnessed it firsthand while watching very dear old friends raise a functioning autistic child.

The point of the chapter is not that autism doesn't exist - it obviously does - and I have nothing but admiration and respect for parents dealing with the issue, including the ones I know.

The bulk of the chapter deals with grown men who are either self-diagnosing themselves with low-level offshoots of the disease or wishing they could as a way to explain their failed careers and troublesome progeny.

Of course, this entire misunderstanding can be easily avoided simply by doing one thing-reading the book.

Aw get over yourself Leary. I don't care if you acknowledge now that autism exists, even if you do qualify the statement with talk of "real" autism, as opposed to what; leprechaun autism? It's great to know you're onto the huge numbers of autism malingerers out there too. We parents of REAL autism kids are so relieved.

I wonder how the context of the nasty quote could make it any less offensive. Perhaps the preceding excerpt was, "Some people use autism as a platform to spout about all sorts of nonsense. They push their spectacularly idiotic ideas about "greening vaccines" or claim massive conspiracies exist to cover up the poisoning of children. Many claim they know what causes the condition, be it wifi, dog shampoo or milk. Others jump on the bandwagon to sell dubious and even dangerous therapies to deluded parents, or run schools that administer electric shocks to children for minor transgressions. Then there are those, who clearly haven't a decent thought in their shrivelled up brains, and who make low jibes about autistic children and their parents, saying horrible, hurtful, inaccurate and plain unfunny things like..."

I don't know how else it could be taken in context and not be all wrong.

Leary's book has lead to a few amusing moments though, not least when Jenny McCarthy rushed out to capitalise on a bit of self-publicity and with no insight into the destruction she was effecting on irony metres the world over, called Leary "obviously stupid."

It won't be a surprise to anyone to hear that I won't be reading his silly book.

17 Oct 2008

"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.

15 Oct 2008

Social Darwinism Drivel on the Austism Parent's Forum

I'm one of the moderators at the Autism Parent's Forum, but it's Bullet who does the work there and who keeps that place going so well with her excellent and courteous advice.

But whenever one of the members reports a controversial post, usually by someone trying to sell their dodgy "treatment" or being disrespectful to people like our children, I get to hear about it. I was recently alerted to the most pathetic and ridiculous post ever put up on the board here.

Now this is obviously a text book example of trolling; join up, write one incendiary post then leave forever. I have no interest in trying to reach the poster "The Reclaimer" and explain his errors or to help him understand just how insulting he has been. I'm assuming this is a male, I can't imagine a woman writing like this or signing off as "The Blademaster" and I shall address my remarks to Bladey.

But I'm still interested in looking at what he wrote, as an extreme example of how some people feel about autism. I think I'd also enjoy pulling this pile of drivel apart:
I’m terribly sorry to interrupt everything here but I cannot take this any longer.
I sit here day in and day out hearing things about autism so I thought I would add my own interjection for a change.
Thank you Bladey for your touching concern, opening your heartfelt remarks with an apology like that shows just how much you obviously care. We are so delighted to hear your "own interjection." Please do continue:
I’m getting rather tired of this whole "classification" thing that seems to have nestled itself into society. EVERY little thing is being categorised all over. All these disorders that people are coming up with just so they can slap a goddamn label onto something.
Back in the day, if a child misbehaves then said child is disciplined and learns to behave. Whereas today, if a child is naughty then there has to be some disorder involved where they can get "support" for themselves.
Well I for one think this whole charade is completely and utterly FOOLISH.
Oh wow Bladey, that must be it, you've hit upon a truth the rest of us have been unable to grasp. Our children don't need to be classified or labelled, they need some proper slaps now and then instead, or some better way to force them to behave!
Has anybody for one second stopped and thought about this as an outsider? Not as a parent etc of the "affected" child, but as a person who has to sit here everyday and listen to and try to sympathise with this bullshit?
Oh yes Bladey, it must be so hard on you choosing to come on to our forum for the parents of autistic children and listen to us talk about autistic children everyday. We must have colonised the internet with this stuff such that you just can't not come here.
I have a few things here that I would like to get off my chest:
1. For me, as a person studying science and parts of human psychology, I find it hard to believe in something that cannot be fully proved. For example, I have read articles stating that "your child may be autistic if it has one or more of the following traits". I’m sorry but "one or more" doesn’t really cut it for me. Mainly because of the fact that ALL people are different in their own ways and having such a list that itself is too broad is both foolish and condescending! Lots of people in the world will end up falling, even in the slightest, under one of these categories. I myself just prefer theories with a LOT more evidence to back it up.
HA!!! Once again Bladey, it should be obvious, science as you say, is all about proving things fully. There's no room for any level of uncertainty, ever. And this way of bunging a label of autism on people for just one or two things, it silly isn't it. That crusty old DSM IV manual gets it all wrong with their insistence on at least 4 different criteria from 3 different categories being met to get the diagnosis. What do they know? They should get you, Bladey to write the next edition. After all, your study of "science and parts of human psychology" makes you qualified to bestow your wisdom upon we mere parents, you should share it more widely.
2. I’m getting really tired of listening about how autistic people (mainly children) should get special treatment and stuff. It’s HIGHLY irritating. One of the main flaws i have thought about here would be the lack of Treatment this treatment causes. if you think about this logically, children are highly influential. if you bring a child up to accept this preferential treatment and not to be as accepting the full responsibilities of their actions then this mindset is going to stick with them when they grow up, Hereby cutting out CURING this disorder.
Once I figured out what all those words were supposed to mean, I could see that it is oh too true, it's HIGHLY upsetting to see these uppity children get speech therapy and blue badges and special passes at Disneyland. This makes them expect such wonderful things as their right when they haven't done anything to earn them. How greedy! Don't they know we live it a total meritocracy? It's a level playing field for everyone and don't let anyone tell you otherwise. Age, race, class, sex, never count against anyone. That's obvious when you look at the evidence in measures of attainment or of underachievement, like earnings and life expectancy, isn't it...?
I know I’m probably either going to get deleted form this site fairly straight away for this post, but I thought it would be nice for m to just get that off my chest.
And before anybody tries to say "you don’t know what its like to live with someone like this" because believe me I do.
I’m speaking here from a point of view that at first thought that autism was a very weak excuse for bad children, and then, soon after as a person speaking from the point of view who has several siblings that have been diagnosed with one type or another of "autism".
You're just the brave maverick laddie, entering the hornets nest of our forum with all our silliness about working with our children, accepting their varied neurologies, loving them and parenting them to do their best.
And how enlightened of you to remind us of that notion of bad children masquerading as disabled. Never miss a chance to out them for what they really are, eh?!
Your "autistic" siblings must be so proud of you and your efforts to understand them.
Also I’d just like to add that support for autistics is DESTROYING society. the planets going rapidly downhill because of mankind’s newfound compassion to help those who cant help themselves.
Hell yeah! Now we get to the heart of it. Autistic people are destroying the planet! They are causing wars without due cause, they bring earthquakes, famine and hurricane upon us. They are behind the collapse of the banks and the volatility on the stock exchange. Compassion for people like that makes everything go wrong.

What more words of wisdom have you got for us Bladey?
There is a nice little thing that I know of as Natural Selection or, survival of the fittest. The people who are striving to help the weaker of the species are ultimately dooming us all to a weaker gene pool and an even weaker future.
Good day
Regards
The Blademaster

Please forward all hate mail to Sh1zer@hotmail.com as i shall enjoy reading it.
Ah, natural selection and the problem of weak gene pools. Are you a fan of HG Wells and his non-fiction output? Those early 20th century eugenicists thought like you, but then Hitler went and lost the war.

Have a look at what this crazy man has to say about these matters:
...there are two reasons why we need to take Darwinian natural selection seriously. Firstly, it is the most important element in the explanation for our own existence and that of all life. Secondly, natural selection is a good object lesson in how NOT to organize a society. As I have often said before, as a scientist I am a passionate Darwinian. But as a citizen and a human being, I want to construct a society which is about as un-Darwinian as we can make it. I approve of looking after the poor (very un-Darwinian). I approve of universal medical care (very un-Darwinian). It is one of the classic philosophical fallacies to derive an 'ought' from an 'is'.
In case you're interested to know who this man is, who doesn't know what you Bladey have expressed so eloquently about the dangers of letting lesser people pollute the gene pool, the above quote is from a piece by Richard Dawkins. He has also written about how some people mix up Darwin's work on evolution as an explanation for life with eugenics as a blue-print for society in his book, A Devil's Chaplain. (Here's a preview.) I mean, what would Dawkins know about evolution?




Actually, "The Blademaster" just in case you missed it, I was being as sarcastic as possible for all of the above. I think your ideas are worthless, and you are clearly a fool to spout such effluent. So catch yourself on, buzz off and do a bit of growing up before you come bothering us again.

Image from a here, a fantastic resource for teachers and learners about evolution.
Bladey might do well to peruse the site.

10 Oct 2008

My Lovable, Kick Ass Blog

At least Nick thinks so, as he's passed on both of these award/link building things to me, and for which I am most grateful.

I've only been reading his blog for a month or so, but it's a fine thing, with stories and photos of his adorable son Jacob, as well as observations on life and what makes it worth living. He even knows that Raising Arizona is the best Coen brothers' film, most people get that one wrong.

Kick Ass Blogger Award



So now I have to name some kick-ass, lovable blogs (I'm combining the categories):

First, I pick Michelle Dawson, who blogs at The Autism Crisis, and keeps her minions in the loop at the TMoB board (the longest comment thread ever). Michelle is an autism researcher who works hard to address the glaring lack of evidence for most of the assumptions commonly spoken of as truths, about autistic learning and abilities. She just hit the headlines in Canada for her terrific win at a Human Rights Tribunal against her former employers, Canada Post, who discriminated against her in shocking ways when they discovered she is autistic. She represented herself throughout the arduous legal proceedings, and her win helps all Canadian autistic people, as well as everyone working for fair workplaces. She took this action solely because it was the right thing to do and didn't claim any compensation.

Next up is Kev Leitch who blogs with a team at Left Brain/Right Brain and who has recently been part of the Science Blogs book club discussion of the fantastic book by Paul Offit (I'm half way through it) Autism's False Prophets. Kev's been leading the fight back against the rise of dangerous quackery in autism discussions for years now, as well as promoting the importance of real rights, acceptance and ways to make things better.

Another blog I've come to more recently and love, is Grannymar, by, um, Grannymar. I had the pleasure of meeting the woman herself in Belfast last month, and even though she's an Irish blog celebrity, she was warm and welcoming. I was about to look through her blog for an example of what there is to love about her. It wasn't a hard task, the very first post is a touching account of her marriage with some great advice to everyone in a relationship. I dare say the woman will kick an arse in need of it too!

Another fine Irish woman blogger is Maman Poulet, whose ass-kicking of charlatans and crooks and exposure of their lies, is a joy to behold. She recently had a scoop about Sarah Palin's foreign travel claims, hee hee!

The last person I'm going to single out, is Kathleen Seidel, the blogging librarian who is so terrifying to grubby money grabbing, vaccine-claim lawyer Clifford Shoemaker, that he served her with an unjust, invasive and extensive subpoena in a craven attempt to intimidate her and stop her exposure of what he has been engaged in. He claimed that she, as the “mere mother of an autistic child and housewife,” was too well informed. He lost, the subpoena was quashed, and the judge set sanctions on Shoemaker, telling the fool man, "clearly he is unfamiliar with the extent of the information which a highly-competent librarian like Ms. Seidel can, and did, accumulate."
Kathleen continues to kick the asses of dangerous quacks.

So there you are. I hope they are all pleased with the accolade.

9 Oct 2008

Irish Autism Action Campaign

I've just had a request from someone I have recently (cyber) met and come to like and respect, to promote a fund raising campaign for Irish Autism Action (IAA) and backed by mobile phone company, O2.

I hate to be so negative, but I have many differences of opinion to the IAA and this campaign. When I last looked at the IAA website, there wasn't much content and it focused strongly on ABA, though I had another look today and have more appreciation for the work they are involved in.

As for the O2 campaign; I really dislike the poster. I have long been irritated by the "puzzle" image of autism. I don't think autism is all that more puzzling than other varieties of the human condition, disabilities and not, nor do I think autistic people have to be "put together" (as can be implied by a puzzle piece). I particularly dislike the picture of the young boy with his mouth missing. I don't like the message, "let us be the voice for children who don't have one." I'd be far more keen on something about enabling children's voices to be heard, or something based on the Scope "no voice no choice" campaign.

As far as I can find with my Google skills (not as good as Jenny's no doubt) this is the main charity representing autism issues in Ireland. To analyse this group and their particular ideology, I read their "message to the Irish government" which had 8 requests:
  1. Commit to Autism Specific Provision in health, education and family affairs
  2. Fund Ireland's first Autism diagnostic centre, known as Solas
  3. Provide each child with the educational intervention appropriate to their needs
  4. Fund ABA schools
  5. Make Autism-specific provision in secondary schools a priority
  6. Fund ten hours of home-based support per child per week
  7. Fund Ireland's first supported living project for adults with autism
  8. Provide automatic welfare entitlements based on diagnosis
I commend their efforts for all of these aims except points 4 and 6.

Looking further into the IAA site, their "What is Autism" page starts with a Donna Williams quote,
"Autism is not me. Autism is just an information processing problem that controls who I am"

After giving a standard definition of autism, they write of:
"the increasing scientific research which has investigated chronic bowel problems in some children with autism and many believe that this continuing research will eventually provide some of the answers to this previously unexplained condition and the current rise in incidence."
and later:
"Although it is widely maintained that the increase in incidence can, in part, be attributed to better diagnostic procedures, it is apparent that the condition itself is reaching epidemic proportions worldwide."
There is no evidence of an increase in incidence, nor of an epidemic. It is possible to focus on the increased needs of children with autism, without twisting the truth to make a case.

Among the many ways the IAA is helping autistic children, is their recently opened diagnostic centre. I saw also that they make lots of helpful information available for the parents of children awaiting or post diagnosis, about the provision of services in every county as well as advice on how to ensure your child gets the help they need and are entitled to.

Heading the "diagnosis and assessment page" is a more admirable quote from another autistic woman, Jasmine Lee O'Neill;
"It does not have to be about tragedy or pain or loss. Bearing an autistic child is not losing that child. It's gaining a very special new son or daughter"


Like the NAS, they provide links to the dubious biomedical therapies groups, but include the disclaimer that "the presence of a link in this list does not indicate that IAA supports or recommends the content of that website". There is also mention of their work in Supported Living Services, something I'm particularly pleased to see.

However the IAA I think are best know for their lobbying for increased provision of ABA as the educational setting of choice for autistic children. Earlier this year, they produced a really unpleasant radio advertisement which was banned by the regulator. The parents of autistic children behind the IAA set up 13 ABA schools now funded by the government as part of a pilot scheme.
These centres of education, which have on average been in existence for 5 years or more, deliver intensive one-to-one (where necessary) scientific intervention to the children. The majority of the tutors in these centres of education have Primary Degrees in Psychology with many also holding Masters Degrees and Doctorates in Psychology. These centres of education deliver both a longer school day and a longer school year to ensure retention of the skills acquired by the children and to prevent regression during the long school holidays.

Places at these schools are highly sought and have been credited in media reports of near miraculous changes in the children attending them. I contend, that any school with intensive one-to-one teaching, and with many more hours taught each year, and an individualised education delivered to suit the learning style and sensory preferences of the child, will have good results, whether ABA is used or not.

Early this year, autism was much discussed in the Irish media, particularly the ABA lobbyist's attempts to have their preferred method of therapy fully supported by the government. I wrote here, here, here and here about the hugely overinflated claims for the effectiveness of ABA and railed against the denigration of autistic people, especially children, in these articles and discussions, some of which included interviews with IAA's celebrity spokesperson, Keith Duffy.

Just as I said then, I support anyone campaigning for better educational provision, better training of special education teachers, more resources for classrooms and smaller class sizes, more speech and occupational therapists, more leisure and sports facilities, measures that would help everyone. I support campaigns to reduce the wait time for diagnosis and the provision of support. I'd like to see more action on the needs of adult autistic people. I feel that the emphasis on ABA and the tactic of occasionally misrepresenting autism, will delay these aims.

8 Oct 2008

PETA crap ad pulled

Yesterday I posted about a shameless campaign by animal rights extremists PETA, that combined anti-science and autism hate in a ugly stew.

Adapted, (and far better) PETA poster by Bev.

The advertising company have taken the offensive and stupid billboards down, but PETA are still insisting that they're in the right.

Ari Ne'eman, President of the Autistic Self Advocacy Network shared the good news:
I am happy to announce that PETA's recent, "Got Autism?" billboard has been removed by the advertising company hosting it. The billboard misinformed the public about the autism spectrum by falsely implying that milk consumption was the cause of autism. Such advertising contributes to a state of public hysteria about the autism spectrum, fueling the fear and resulting prejudice that marginalizes us from society at large. It is unacceptable for autistic people, our families and supporters to be used as instruments in PETA's political agenda or that of any other unscrupulous interest group. Our community came together to communicate the need for a swift withdrawal of this ill-informed piece of advertising, and I'm pleased to say that were able to achieve a swift result. That we were able to accomplish this so quickly and effectively speaks well for the autistic community and the cross-disability rights movement. Thank you all for your support.
Thanks to everyone who read and shared this information and especially to those who signed the petition. Thanks to Ben Goldacre, David Colquhoun, Bock and the rest of you who mentioned all this, guaranteeing that far more people got to hear about it. It's really heartening to see such wide support for human respect and integrity.

But most of all, thanks to Ari and the disability advocates who once again led the way, organised and worded the petition so perfectly, and showed what we can achieve when we work together.

7 Oct 2008

Hey PETA, Got Morals?

...or scruples, or integrity, or honesty or consideration for the ethical treatment of a much maligned and mistreated group of people?
No, obviously not.

PETA have proven once again what a crowd of pathetic people haters they are with their latest campaign, this time jumping on the bash-the-autistic-people bandwagon.



So much anti-scientific and unethical nonsense abounds in discussions about autism. One such example is the promotion of a supposed link between the proteins casein and gluten and autism. I wrote about this theory here, giving links to some of the published data on the subject, showing just one review claiming that a diet avoiding both these proteins was linked to parental reporting of a decrease in their children's "autistic traits," a nebulous set of criteria to measure, I think.

Anyway, the idiots at PETA have heard about these theories and decided to spin the autism hate and fear to suit themselves. They haven't even got their own stupid story straight, as the studies they mention are discussing possible correlation between autism and casein (in milk) combined with gluten. Do they want all children to go vegan and stop eating gluten too? Well, those fools probably do expect that. They say:
"Autism is a brain disorder that causes sufferers to have extreme difficulty communicating and relating to others. It is often marked by anti-social behavior like screaming and obsessive repetition of actions, which takes an enormous emotional toll on sufferers and their families. PETA has created a billboard to alert the public to the connection between this devastating disease and dairy-product consumption."

See how they have adopted the language of the previous soldiers against autism (ABA=cure adherents, anti-vaccine loons, biomedical quackery child abusers). See the soggy cereal making a big sad face, 'cos autism is so awful and dreadful.

I am angry about this. I am angry with all the lies and abuses, with these groups pushing their agenda by offending autistic people. I am angry that little children with autism are held down in the offices of unscrupulous medical practitioners while chelation agents are injected into them, I am angry that some children have to touch blue 5 times to get a sweetie in place of getting a decent education, I am angry many are forced to swallow bucket-loads of supplements and sit in HBOT tents, that others must spend hours listening to AIT tapes or drink the magic water of homeopathy instead of seeing proper doctors and having their medical issues sorted out properly. I am angry that these children are the guinea pigs for any quack out to make a buck or any dodgy researcher looking for a hook for funding of whatever crazy notion they can come up with. I'm angry that real needs like accommodation, inclusion and acceptance of autistic people are set aside while we have to battle these other evils. There's more, but I have to stop writing this at some stage.

As for diet and health links, this is not difficult. If you or your child appear to be among the many people allergic or intolerant to various food stuffs, it makes sense to have your concerns checked out by seeing your doctor or dietitian and if necessary, altering your diet to improve your health and quality of life.

Please sign this petition and read the following letter from The Autistic Self Advocacy Network:

Hello all,

Recently, the organization People for the Ethical Treatment of Animals (PETA) launched a new ad campaign entitled, "Got Autism?", misleadingly implying that the consumption of milk is associated with the cause of the autism spectrum. PETA is misinforming the public about autism and thus joining a long line of unscrupulous groups that have sought to try and spread fear about autism as a means of pushing their particular agendas.

Attempts such as these treat individuals with disabilities as pawns in the efforts of other constituencies. By refusing to acknowledge the right of the autistic community to be referred to with respect instead of as the focus of public hysteria, PETA contributes to a state of affairs which marginalizes the disability community. People with disabilities, our families and our supporters deserve better than the exploitation and fear-mongering that comes about when disability is used as a means of scaring the general populace. For millions across the globe, the answer to PETA's "Got Autism?" question is an unequivocal yes. That should not spell the end of our lives or prevent us from being fully included throughout society. By exploiting us, PETA becomes a culprit in the social forces that marginalize people with disabilities and lead to the discrimination and prejudice that truly disable us.

Let PETA know how you feel about its choice to exploit autistic people by writing to them at info@peta.org or call them at 757-622-7382 and dial 0. In addition, we encourage you to express your support for these ads' swift withdrawal by signing this online petition.

Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

6 Oct 2008

Learning at home with autism

On a cold, dark February morning, I gathered my long-legged but skinny son in my arms and carried him to the end of our street to wait for a bus. He was six years old and lacked mobility problems. Yet on that morning, like all the other mornings when I brought him out early to meet his bus, he was overwhelmed by the sleep that still hadn't quite relinquished it's hold, the inclement weather and his tension about what lay ahead and needed my arms to hold and comfort him and my neck to hide his face in.

He spoke his longest sentence to date that day as he said quietly yet emphatically, "I not go to school today." So we turned and went back home. He has not been to school since.

When he was six months old, my maternity leave ended and I returned to the lab where I worked. While his older sister had thrived in the workplace creche, he was always distressed and it tore me up to leave him. So I ended up serving just the minimum time required to retain my maternity pay and have not returned to paid employment.

He was a demanding baby and I was often shattered. I didn't know then that this child whom I'd nicknamed my "wee marsupial" for his desire to be attached at all times to his favourite bit of my anatomy, would gain a diagnosis of autism two months after his second birthday and four months after the birth of his baby brother.

I have focused on raising these children and eschewed the heady delights of a glittering career, especially since my husband's job demands long hours and frequent trips away from home.

Years ago, while reading online about autism, I encountered families who opted to home-educate their autistic children. They described the difficulties their children had faced in schools; the inflexible education system, the lack of appropriate support, the bullying and the children's feelings of inadequacy and isolation. Many had battled with the education authorities to have their children's needs recognised or to have those needs addressed. I didn't want to spend too much time tussling with the authorities, I just wanted to raise my children.

Intrigued and inspired by their stories, I researched it further, meeting with home-educating families, reading books and articles and discussing it all with my husband and our daughter. She promptly decided that she wanted to be home-educated after having attended primary school for almost two years. And so it began. My youngest son has never been to school.

My autistic son had gone to a fantastic nursery and on to a special school. I knew that eventually he would join his siblings in learning without school but I worried about how I would cope with teaching all three of them, especially considering how demanding he could be.

Then he moved to a new school which he never enjoyed, and clearly expressed his desire to leave, I listened and complied. I removed his name from the school register and embarked on a path of home-educating all three children.

It has been wonderful and he has thrived and developed in ways which, in my ignorance, I'd have thought were impossible. I can be forgiven for having such low expectations; the overwhelming depiction of autism I was faced with at his diagnosis, was very negative and heavy on the devastation rhetoric which has evolved over time as part of the mythology of autism.

But for each of my children, home-based education has allowed them to learn in a highly individualised and personally optimised setting. They are motivated to learn via their particular interests, like Doctor Who and Harry Potter, pets and wild animals, Thomas the Tank trains and roller coasters.

My son is autistic. It's an integral part of him, like his gender or eye colour and affects how he learns, how he experiences the world and how he interacts with others. It is no less valid a way of being than a non-autistic life. He is wonderful, just as he is. I am helping him and his siblings, to develop and grow to adults with the ability to think, the desire to learn and the ambition to realise their potential. I want them to have empathy and respect for others, to have confidence and self-esteem. I want them to develop the skills to solve problems and the flexibility to deal with modern life as well as they are capable. They learn that discrimination on the grounds on disability is no more acceptable than discrimination due to race, gender, social status or sexuality. Although I have the same wishes for all three children, they will not end up doing or achieving the same things and they will have different levels of independence. That's fine too. All I can do, is raise them as best I can, in an atmosphere of love and acceptance of their differences, difficulties and strengths.

My house is never as tidy as I'd like; there are usually piles of books, CD Rom boxes, swimming bags, toy trains and track, marker pens, dressing-up clothes and modelling clay lying about. Perhaps since we're all at home more than other families, it's more difficult to keep the chaos in check.

It's rarely quiet. The youngest might be in the kitchen perfecting his dance moves to a Justin Timberlake song, his sister in her room with the headphones plugged into my laptop and following an online maths course, while their brother designs another action packed funfair on Roller Coaster Tycoon or drawing a beautiful picture on the computer.

I stay more or less sane with frequent cups of tea, the odd break to blog or to read my favourites as well as lots of hugs and chats with the three greatest (in my biased opinion) children in the world.

2 Oct 2008

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.

1 Oct 2008

A video about Duncan

I made this video last year after someone read a post here and shared with me, a song he'd written for his own autistic son. I asked him if I could use the song to make a video and he consented, then I posted the video on YouTube but set to private so only invited friends could view it. The song writer made a film of his own using his song which can be enjoyed here.

I was thinking about it again yesterday. I really like this video and wanted to share it more widely. I didn't want to start from scratch making it again so I re-edited it a bit, adding a few more captions and obscuring some words I wanted to remain private.

I may delete this soon, but I hope anyone who watches it enjoys it anyway.