Assembly Manual for Autism Articles

I haven't seen one of these for a while- a newspaper article on a parent's view of autism that adheres rigorously to the template I wrote in 2008. Today offering is titled Autism and ABA: 'My beautiful, fun little boy was slipping away from me'. In this, we learn how wealthy, beautiful and accomplished Tanja Gullestrup uses tough-love therapy to "stop her losing [her three-year-old son] to this isolating condition".

So here's Step 1-4 of the Autism Article TM Template (Step 5 is optional and refers to vaccination-bashing autism articles) :

1: Baby is born
2: Everyone rejoices
3: Baby grows
4: Mum realises baby is somehow different, something is not quite right,

And lo! the template it doth predict the story most accurately as we learn that the "usually smiley and playful" child "wasn't making eye contact with anyone and didn't appear to be taking in anything going on around him. It was like someone had flicked a switch in his head" and he "had begun to withdraw into his own, self-contained universe".

Step 6: Mum struggles to get anyone to take her concerns seriously. Her husband might think she's worrying about nothing and that no child of his could possibly be anything less than perfect. All the doctors she encounters are callous and all the other professionals are harsh and unhelpful. Eventually, one special therapist or teacher (but not a medic) comes along who understands and for the first time, really listens.

And as outlined in step 6, this parent is convinced that the NHS would fail her son:

" Left in the hands of the NHS, she points out, Konstantin would so far have had little more than speech and music therapy, ‘neither of which would be giving him the skills that he needs to survive and have a life of dignity. Children on the autistic spectrum need to be taught how to fit into society, and the real cruelty comes from neglecting to do that.’"

My autistic son has never had any form of ABA(TM) and yet he is living a life of dignity. Nor is it cruel to ask that society accepts neurological diversity. 

Step 7: After much effort and heartache, Mum is devastated to learn that the explanation for all the child's problems is this terrible curse known as Autism.

And here comes the devastation: 

"a developmental paediatrician confirmed what she had not wanted to admit, even silently to herself – her son was indeed on the autistic spectrum. ‘I felt as though my heart was being ripped out,’ Tanja recalls. ‘My mother was with me, thank goodness, and as we left the hospital, I was physically sick. I am a fighter by nature but in those darkest hours I definitely became unhinged.'"

Step 8: Just so we know how hard their lives are, how terrible this Autism thing is, several examples of the child's terrible behaviour are described, the tantrums and self-harm, the strange humming and abnormal interest in trains. This makes the book "gritty" and "unflinching" in the newspaper book reviews and is generally thought of as a good thing.

This child is so young that no Step 8 examples of violence are provided. Instead, his strange otherworldly behaviours are outlined:

"his speech regressed and he no longer responded readily to his name", and "in the weeks leading up to [the child's] diagnosis he had begun to walk on tiptoe and repeatedly pull his hair. He also opened and closed doors incessantly and became obsessed by pushing buttons on electronic toys."

Step 10: The warrior phase commences. Mum finds out stuff the doctors don't know or didn't want her to know. She arms herself with superior knowledge, garnered from a motley crew of brave mavericks or comes up with some self-directed plan, and goes medieval on the autism.

Step 11: Mum is a lone crusader, challenging authority and staying strong and calm in the face of what to ordinary mortals would be insurmountable obstacles. But Mum reveals the real terror she felt, the depression and anxiety, the tears and sleepless nights, all due to the autism which has seized her child and holds him or her hostage.

"[Mum's] quiet confidence is centred on the conviction that, while there is no ‘cure’ for autism, she is providing the next best thing for Konstantin – a radical, tough-love therapy known as Applied Behaviour Analysis (ABA)." 

"However as she began to seek help, Tanja also realised that she was facing an uphill struggle. In the US, ABA is tried and tested – successive studies have shown that half of children given full-time ABA tuition early enough start school  and many need no further therapy at all. The other half make significant progress, too, reducing their need for special needs support. ABA is endorsed by the American Medical Association and in the majority of US states health insurance companies are mandated to cover ABA therapy. But in the UK, the National Institute for Health and Care Excellence has yet to provide ABA as an option for the treatment of autism. Its official line is that it cannot recommend ABA because a review has found no evidence to support it."

It is true that NICE, after a thorough investigation of the claims and the actual evidence, decided not to recommend ABA. But another claim in this paragraph needs to be countered: there is NO evidence whatsoever that 50% of children who receive early and intense ABA ever become "indistinguishable from their peers" (whatever that means). That is an utter fabrication based on a poorly written study from way back in *1987* which combined 40 hours of intense therapy with harsh punishments. Do ethics matter? As I have written before, why are standards so very low when it comes to autism?

And another point to make, when lauding Lovaas as a pioneer, bear in mind that he first trialled his ABA as a gay/trans conversion therapy.

Step 12: The intervention phase commences. The child gets older and matures, hopefully with lots of love and good education as well. But the intervention is credited with effecting a miraculous cure.

Step 13: The story ends by recalling just how far they have all come and how it would never have been possible without x,y or z (ABA, the companionship of a Golden Retriever or certain biomedical treatments). The child is said to be normal or recovered, as measured by a place in the Valhalla of this type of autism parent - mainstream school.

So this child, aged just three years old, is undergoing seven hours of ABA tuition, five days a week. Instead of calling social services the Daily Mail asks that we donate to her charity so that yet more little autistic kids will be subjected to the same. "‘He is using every ounce of his brain to do the work and, by the end of the day, he is exhausted,’ says Tanja."
I do not admire or condone this.

But let's see how if the template still holds:

"'...the transformation has been astounding.’ Before starting ABA, Konstantin had become so unsettled, he was incapable of sitting still to eat, read or watch TV. ‘If you took a toy away from him, he’d scream for an hour, and when he woke at night, he howled the house down,’ says Tanja. ‘Within a week of starting therapy, he was making eye contact and engaging again, and within a couple of weeks he was toilet trained, which I had begun to think would never happen.’ Eighteen months on, he is content and compliant and plays happily with his sister"

The child is only three years old! How much of this can be attributed to ABA and how much to natural progression? My son is 14 and can do all sorts of things he couldn't manage when he was 2! Also, I strongly oppose any treatment that has "compliance" as a goal. Too many disabled people have suffered as a consequence of early compliance training.

I have decided though that my template though needs another step:

Step 14: pay now or pay later!

This step is exemplified in the following horrible paragraph:

"ABA is undeniably expensive. A full programme, whether carried out at home or in one of the handful of ABA schools in the UK, requires intensive teaching for up to 40 hours a week, 49 weeks of the year, and costs £45,000 annually, ‘which sounds a lot, but it is less than the £150,000 to £200,000 a year costs of residential care for young autistic adults once they become too big and aggressive to live at home,’ Tanja points out. (A recent study by the London School of Economics and Political Science estimated that autism costs Britain £32 billion a year, more than heart disease, strokes and cancer combined – making it the nation’s costliest medical condition.)"

"Too big and aggressive to live at home"! What a revolting statement. This sort of argument is particularly galling. There will be a high cost to provide appropriate lifetime support structures for some autistic people, and so what? Early ABA for all will not change that. People are entitled to the help they need as citizens whether they have a disability or not. The UN Convention on the Rights of Persons with Disabilities points of the problems of  "putting a price tag on the basic human rights for a significant segment of the population".
Furthermore, "it is actually good economics to ensure that disabled persons are able to live up to their potential. When there are no obstacles in their way, disabled persons are employees, entrepreneurs, consumers and taxpayers, along with everybody else."

The article ends:

"For Tanja, life may no longer be whimsical and carefree, but it has resounding purpose. ‘I believe there is a reason why Konstantin was given to me,’ she says. ‘He is the most sweet-natured and loving boy and he is living proof of what can be achieved. If he can deal with the challenges of autism, then so can I. So every day, we carry on and we count our blessings.’"

Life has purpose for all of us. Being mother of a disabled kid makes you no more special or worthy than anyone else. I count my blessings every day too. I just wish that the sort of autism-mum story exemplified by this article would no longer be given a platform. It's beyond time to amplify the voices of the real autism experts, the people who are themselves autistic. 

Saturday

Gordon and I were watching one of the many Michael Jackson tribute TV shows with Duncan snuggled up next to me on the sofa. He particularly enjoyed Say, Say Say and had a little "wave your arms around" dance to himself. Then we played a few of our favourite tracks from the Off the Wall CD and danced about the living room. Lady and her friend came in and requested Thriller then demonstrated their entertaining interpretation of the zombie dance. Thomas was a tad embarrassed by it all.

I went into Belfast hoping to meet a blog buddie who was up attending an ABA conference. I had the wrong time in my head and arrived half way through her lunch hour. Eventually we found each other and had a few minutes of hasty but delightful conversation before she had to go back to one of the many talks. I sneaked in to listen to just one of them, to see if any of my criticisms of ABA and it's promotion were addressed, but I felt terribly guilty about crashing the conference so I went off to poke about in the shops for a while.

Later Gordon and I went out for my birthday dinner. I had been especially grouchy; we were late to leave and I was starving. I am not at my best when I am hungry.
But after sitting down and downing a drop of red wine, I suddenly cheered the heck up and we had a most delicious meal. We declined dessert, but were provided with one anyway; three of the waiters brought out a toffee cheesecake embellished with a birthday candle while singing Happy Birthday. I can thank my waiter chum for that kind surprise, and for the massive reddener [blush] it generated.

We met Phil afterwards, a smart and talented man who's a fantastic photographer and as into literature as Gordon is. Over a few drinks we yapped about all sorts and tried to get my husband interested in twitter and blogging. It had been a lovely night.

Just as he is

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

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

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

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

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

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

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

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

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

Autism Culture in Salon

Via Michelle Dawson's Autism Crisis blog, I have just read a recent Salon article about the supposed "burgeoning "autism culture" movement". This is presented as an idea with which "not all parents or medical experts agree." Amazingly, Elizabeth Svoboda the article's author, totally misrepresented the work Michelle Dawson does and just invented a belief system for her. Ms Svoboda did not contact Michelle before writing about her. Michelle works as an autism researcher but is mistakenly called a "autistic-rights crusader" who "convinced the Canadian Supreme Court to overturn an appeal that would have provided state funding for ABA therapy." Read Michelle's post to learn the truth about her court appearances.

Ms Svoboda writes,

Like the deaf culture movement before it, the so-called autistic culture movement continues to gain traction, boasting thousands of adherents among parents, patients and healthcare professionals. And the rhetoric is often as strident as anything out of the deaf-pride movement. Some autistic people even use the pejorative term "curebie" to refer to people who hope for a cure for the condition. Organizations like Autism Network International view efforts to cure autism as similar to misguided efforts to cure homosexuality and left-handedness.

As its associated swag -- buttons and T-shirts proclaiming "I am not a puzzle, I am a person" -- suggests, the movement aims to redefine autism as something to be valued and protected, not obliterated. Proponents insist that forcing autistic people to behave like "neurotypicals," a term that borders on insulting, squelches the very qualities that make them unique.

Ooh scary, rude people, calling those who push any old untested, dangerous and painful "treatments" on little autistic children by pejorative terms and calling people whose brains function in a typical way the borderline insulting term, "neurotypical."

Would she prefer they (we) be called normal? Also, few would call those who merely hope for a cure curbies. Like others I know, I don't much like the words curbie and neurotypical and prefer to use pro-cure and non-autistic (or when referring to children, typically developing).

Is there anything wrong with autistic people proclaiming their personhood on buttons and T-shirts? Does Ms Svoboda have any idea of the long history of dehumanising language and
treatment autistic people have endured and continue to endure? There are a few examples on the Autism Demonized blog and more on my blog under the label "disablism."

Neither can I understand how Ms Svoboda, came to the conclusions she did based on the quotes given by the 3 supposed representatives of "autism as a culture" in her article.

Ari Ne’eman, president of the Autistic Self Advocacy Network is quoted as saying,

"The real ends for autistic people should be quality of life, full access in society, the kinds of things we support and are working for. Parents have been told that the way to approach these things is to support research for a cure, but our belief is that that's not the most effective paradigm.
The cure paradigm sends a message that there is somehow a normal person under the autistic person, and that's a significant denial of who we are."

These are reasonable points to make. A cure is not going to help autistic children and the adults they will become. I don't see how this can be rephrased, as Ms Svoboda does as, "Jenny McCarthy can go jump off a cliff"? I think she's setting out a false alternative of cure versus culture when it's a bit more complicated than that.

Kathleen Seidel is quoted as saying,

"A person's nervous system is not fundamentally going to change -- an autistic person is going to remain autistic throughout his or her lifetime. And it can be very problematic and a source of stress for an autistic child to have to suppress certain mannerisms."

No, nothing about autism-as-a-culture there either.

Dora Raymaker is quoted as explaining her preference to communicate via text chat,

"If we'd done this interview on the telephone you would have been lucky to get much more than disjointed, stuttering, completely non sequitur responses from me. But because you allowed me to do this interview through text-only media where I can slow down, really understand you, and bypass my difficulties with spoken language, I'm able to give you intelligent, on topic answers. Do I need a pill to make me suddenly able to have phone conversations, or do I need you to be able to find a middle ground that bypasses my disabilities?"

Oh dear, Dora actually used the "D" word! But never mind, just misrepresent her too and pretend she thinks autism is just a difference:

The key assumption that underlies much autistic culture discourse is that any autism-related limitations can be worked around and dealt with in a way that does not compromise the autistic individual's core "personhood." When such workarounds are found, Raymaker asserts, the concept of a "cure" becomes irrelevant.

From my reading of the piece, Ms Svoboda would do well to read a bit about the social model of disability. Some people have mobility-related limitations that can be worked around with the use of a wheelchair and assessible transport and services. These do not compromise the person's core "personhood."

Harold Doherty is interviewed and does his party party piece of making stuff up about those uncaring neurodiveristy types. Then near the end of the article Ms Svoboda makes the following fabulous claim, that "the autistic culture movement may come off as dogmatic at times." Oh my. When compared to pro-cure proponents like the aforementioned Jenny McCarthy and her Generation Rescue buddies, the tricksy lawyer, the ABA battlers, sure, those of us who reckon autistic people should be treated well and not cured or eliminated are really dogmatic!

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.

Autism: It's just life

Every so often, real life intervenes and blogging is the last thing I feel like doing. My head is too full of thoughts that are beyond the boundaries of what I share here.

Also, I find it easier at times, to write when I have something to complain about. I suppose it's easier to declaim than to extol. I know I write positively about my children and make a point of focusing on the positives of raising a disabled child. As well as being my reality, I think it's important to redress the all too common narrative of "devastation." I'm pleased that even now when I'm almost full of worry, my post about Good Stuff had 9 more entries than my list of Not Good Stuff.

But here's another example of that narrative. Published in Saturday's Daily Telegraph is a story called Autism: A different life featuring the people behind a magazine pushing the unproven biomedical theory of autism and stuffed full of advertisements and articles on supplements, extra enzymes, detoxification and a host of other dodgy quackery.

I was introduced to Polly Tommey by my health visitor when Duncan was diagnosed with autism six years ago. I met her and spent a long afternoon listening to her theories and her detailed regime to rid her son of his autism. Back then I was impressed at her zeal and ostensible knowledge of autism's causes and treatments. Her son had had intensive ABA teaching. He had a host of supplements daily. He was fed only organic food and water from glass bottles, lest any pesky toxins intrude.

She talked about his numerous infections and how she believed the many courses of antibiotics he'd taken as a baby, together with vaccinations, were connected to his autism. She asked if Duncan had taken antibiotics and yes, he'd had two courses. She asked if he looked frail and had dark rings below his eyes. Yes, he looked frail as he ate very little and was well below the average weight for a child his age. I remember that I also said that he did have dark rings, even though I hadn't noticed such a trait, because I was caught up in her pitch and wanted to think that she knew how to help me help him. She warned me against joining the local NAS group where they refused to believe in cures and whose acceptance she interpreted as negativity.

She was a very kind lady. She welcomed me into her home and really did want to share what she knew in an effort to help. She presented me with a glut of her magazines which I read religiously for the next week or so. I tried to get Gordon to take an interest in it all. I showed him the article by the nutropath, advocating various vitamins and minerals. I showed him the articles about the labs which tested autistic children's hair, blood and stools and found all sorts of non standard levels. He scoffed at the lot of it. He just knew too much about microbiology, statistics, pharmacology etc. to be taken in by any of it. He pointed out a pile of what were (to him) ridiculous assertions contained in the magazines, and since he really knows his stuff, I dumped the lot of them. I considered it safer than taking the risk of passing them on to another unsuspecting parent, one without the benefit of an in-house quack-buster.

But times have changed since then. What could be attributable to ignorance back in 2002, is less excusable today. The science has moved on. Numerous studies have failed to find a link between vaccination and autism, while as many have found more evidence for the genetic basis of the condition. Those who cling to environmental explanations in the face of the evidence are coming from a faith based position.

The Telegraph article describes the efforts Polly and her husband Jonathon made to treat their son Billy:

Jonathan's response was to do everything he could to improve his son's health by testing and treating the biomedical disorders that contributed to his condition. He put him on a gluten- and casein-free diet, treated various funguses, viruses and bacteria in his leaking gut, and gave him zinc supplements to increase his appetite.

None of these therapies have any basis in evidence. Her son now sounds much like Duncan who has not had any behavioural or biomedical therapy.

Young Billy was also the first child in the UK to be given secretin, ye olde wonder treatmente. It was a nineties thing and was later studied properly and found to have no effect.

But the Tommey parents are unfazed:

Nine years on, Jonathan Tommey has completed training as a clinical nutritionist and, last year, he set up the Autism Clinic where he has tested and treated 500 children. Some of them have done so well that he now calls regressive autism - autism that is not evident at birth but begins during childhood - 'a biomedical disorder with a psychological diagnosis'. 'Some children,' he says, 'have improved so much that you could call them recovered.'

Well you could call them recovered, or you could call them older, more developed. Or has Mr Tommey, like Leo Kanner and Hans Asperger, really discovered a new condition?

The Tommey's magazine is popular and is about to go on sale in Sainsbury's and Tesco. It's also said to sell well in the USA, no surprises there.

The article continues:

'It's important to be international,' Polly says. 'It's only by putting our heads together that we will find answers to the questions I want answered.' These include: why are so many children becoming autistic? Why are parents having such a struggle? Where will all these children go? And why are parents committing suicide with their children?

Apart from that last, it's a set of reasonable queries. But by "parents committing suicide with their children" do they mean parents who murder their children and kill themselves?

The "apparent" growth in autism is discussed, with increasing awareness and diagnostic substitution mentioned as possible explanations, but the Tommey's have their own ideas:

...the Tommeys believe there are more than ever before; the survival of premature babies and an increase in births to older mothers may be partly responsible. Environmental factors may also explain the rise.

These might include vaccines (including MMR, as suggested by the gastroenterologist Andrew Wakefield), pollution, antibiotics and other challenges to immature immune systems. 'Whatever the cause,' Polly says, 'with all these children growing into adulthood, we are sitting on a timebomb.'

Ooh, a timebomb! Look out world. Forget about climate change, global poverty, war and fuel shortages, worry about scary autistic children growing up.

Battling with local authorities for schools and respite care is wearing for parents with autistic children, but fearing for the future is worse. The day will come, they know, when they will no longer have even a quiet few hours while their child is at school. And what will happen when they die? 'People with autism have a normal life expectancy,' Polly says, 'though a fair few die young in accidents: they run across roads, unaware of danger.

I too worry about my son's future but see the best way of supporting him as putting pressure on those in power to change work places to make them more autistic friendly and to arrange workable living support systems. I do not think it's worth mentioning that autistic people have normal life expectancy. If we parents of autistic children all focused our energies on enabling them to live as independently as possible as adults, and ensuring they have a good early education together with opportunities for life-long learning, then our time would be well spent. It has got to beat harping on about the MMR, secretin, chelation and dodgy American mail order labs.

I also think the needs of our children and all autistic people can be met without resorting to using the terrible cases of Ryan Davies and James Wardle as examples of what happens without support. Ryan Davies was murdered and though what exactly happened to James has not been made known yet, it's likely that he died unlawfully too. These deaths can't be excused by saying that their parents were driven to despair.

Some parents find the prospect of a lifetime of such misery so unbearable that they take their own and their children's lives. Two years ago Alison Davies took the heartbreaking step of jumping off the Humber bridge holding her 12-year-old son Ryan, and the discovery this April of the bodies of Heather Wardle and her 22-year-old autistic son James once again drew attention to their plight. But there remains no systematic planning for the estimated 135,000 children with autism in this country, three quarters of whom are boys.

Polly talks about her own son:

'But I don't want Billy hidden away and institutionalised. It's such a waste. I want him to feel useful - and to be able to give something back to society. Often children who appear very severely impaired, and are completely non-verbal, have wonderful abilities that shouldn't be wasted. I know one little girl who is brilliant at weaving, another who does wonderful graphics. Some are good at circus skills because they have no fear; others are very good at maths. They would all be much happier if they could be productive.'

People have innate worth, even when they don't seem to have any useful skills, but it's very important to help people enjoy life and develop their skills and interests.

The article ends by describing the Tommey's latest venture, the Autism Trust, a multi-million pound project to build a village for 50 autistic residents. They foresee the local authorities paying £80,000 per year to care for each resident. On looking through its website, I don't think it demonstrates the best use of resources. There's the Wellness Centre "where in–house experts including nutritionists and therapists will practise alongside behavioural, educational and developmental experts" and "vocational opportunities...ranging from organic and eco-friendly agricultural and horticultural work through to technology and design enabled work stations within the office and administration area."

We'll find another way thanks.

What do I know

The Irish media's coverage of ABA continues.

Last Sunday, there was an opinion piece entitled "Disgraceful system that has failed or children." Writer Marc Coleman states that "What is happening with autism calls on our resources of outrage." But just a few lines later he writes, "Thank God, I have no experience of autism in my immediate family: in Ireland that would be some cross to bear."

Is anyone else outraged at this disgusting statement? How dare he say people like my son are a cross to bear.

He then tells the story of a friend of his who rang him to apologise that he wouldn't be able to attend his wedding, as the friend's child was about to start treatment that same day. This child didn't have cancer or an illness that meant "treatment" couldn't be postponed for a day, no, the child was autistic.

Coleman then totes up the cost of autism on Irish society, the burden these people place on the economy, basing his figure on a UK study. He comes up with the figure of €100m a year; the cost of institutionalising a child with autism for the rest of their life. Because, he thinks, that's the only alternative to ABA.

Humph.

He then says;

With a success rate of 50 per cent, the return on investment of an extra €50,000 for four years of Applied Behavioural Analysis leads to savings per child to the exchequer of €1.4m. And even if that figure is an overestimate, with around 6,000 children estimated to have autism, the return to the exchequer over our lifetime will be significant.Of

Of course this is how a clever, worked-out and integrated approach to policy making would work, an approach with a heart, a brain and an ability to combine both. Yes Applied Behavioural Analysis is needed.

A success rate of 50%!!!
What foolishness.

In the Irish Examiner, I read that Michael Ringrose of People with Disabilities Ireland says,

What seems to be accepted by all sides is that the ABA teaching method is appropriate for certain children with autism. What is needed now is to make sure the appropriate system for each child is diagnosed in the first instance but crucially, that it is available to each child, not in a limited way as the current education system dictates but as the child needs it.

I wonder if there are any autistic people on the board of that organisation.

Yesterday's leader in the Irish Independent is supportive of the demands for ABA.

Parents believe ABA is by far the best treatment and this view is backed by many experts, including a prominent member of a task force that advised the Department of Education on autism. The department and the minister reject the exclusive use of ABA and favour a combination of methods. Ms Hanafin says that this view is endorsed by a consensus in the international autism community.

Can both sides be correct? The parents who report phenomenal improvements in their children's condition as a direct result of intensive ABA treatment, or the minister who insists she is simply applying best international practice?

Earlier this week, in these pages, the minister made her case in a reasoned and logical manner. Sadly, for her, many parents of autistic children see this only in terms of love, not logic.

I responded to the online edition, pointing out that not all parents think this way, and that you can have both love and logic. I also briefly outlined how scant the evidence is for ABA, and wrote, "the study people kept referring to as the best evidence, is 21 years old, had major design flaws, and involved the use of harsh aversives; slapping and shouting at the children. Yet people keep quoting this study as evidence for ABA! (The 50% "cure" claim originated with this.)"
I had to keep the comment to under 1000 characters, which didn't seem to apply to some subsequent commenters!

The next commenter got annoyed at what I said, especially the bit about the 21 year old study. But it is true, most of the media stories I have read do make the credulous statement that there's a 50% success rate" or 50% of children are"recovered" using early, intensive ABA, so it is crucial to point out the flaws in this study. This post in the blog Natural Variation, an excellent autism blog, does just that.

One of the comments is from a Mr Mickey Keenan.

What the minister has never understood is that ABA is NOT a METHOD any more than Medicine is a METHOD. Medical SCIENCE and Applied Behaviour Analysis are distinct SCIENCES. Until she gets this right, the minister can't even begin to address funding issues for training in ABA let alone funding for schools. You can't create more ABA schools if you don't have more trained behaviour analysts to work in them.

So, minister, are you right, or are the professionals right? Is ABA simple another METHOD, or is it a SCIENCE? Once you acknowledge that it is a science then you have to concede that it is possible for one 'METHOD' to apply to all children. That "METHOD" is called the SCIENTIFIC METHOD. I sincerely hope you are not saying that you can envisage something other than the scientific method being best for the children.

From all the SHOUTING, and weird statements, I will assume this is not Dr Mickey Keenan, University of Ulster lecturer and ABA specialist.

I'm a lay person, just a mum. I am interested in how autism is reported because the attitudes depicted and disseminated by the media directly and indirectly affect my autistic son. I hate to see the negative language used in some of these stories, the fear of difference and lack of understanding, the assumption that autistic children are so very strange, that they need a wholly separate way of teaching them, one which would never be used with typically developing children. I get upset at the hype and misrepresentation of the scientific basis for ABA, just as I do when people say vaccines cause autism.

It's upsetting that there doesn't seem to be anyone speaking about these things in Ireland. Perhaps everyone else agrees with the idea of ABA funded for all the children whose parents want it, no matter that the reasoning they're using in demanding this is so flawed. But whatever, what I say is not going to change anything.

ABA Hyped in Irish Media

I've written a few times about the hype and inaccuracies about ABA in the Irish media recently. Well it continues. Here I examine and summarise some of these articles.

On Wednesday, the Irish parliament debated a motion by opposition party Fine Gael, calling for government funding of as many ABA schools as parents want.

According to the Irish Independent,

Experts say ABA is the best form of education for autistic children, but the Government refuses to provide blanket funding for the therapy.

Who are these experts, and what gives them the authority to say such a thing without evidence?
The reporting of the ABA stories is entirely credulous.

Imagine if some people had developed what they said was a treatment for, say, epilepsy. They have no studies showing increased efficacy of their treatment over other standard therapies, and only one randomised trial, which also showed no benefits, and most of the authority for the claims of this new treatment, came from a poorly written 21 year old study, which combined the treatment with a now outlawed additional drug. Would people be writing this therapy up as the best way to help people with epilepsy? Well, I certainly hope not.
Why then are standards so very low when it comes to autism?

So the motion was lost by a mere 8 votes, and many members of the main government party, Fine Fail, while voting against the motion, criticised their Education Minister. TD (member of parliament) Mary O'Rourke said:

I feel that the door is not fully open within the Department of Education to embracing ABA. The effect ABA has on children with autism is huge.

How does she know this?

Keith Duffy, Boyzone member and Ireland's own 'autism advocate' celebrity, said;

It's very, very simple. If you give a child the appropriate attention and education for four to five years it will cost between €26,000 and €50,000 per year and the child then has a chance of entering mainstream school.
But if you don't do that the child could end up institutionalised by 13 and it will cost the State €3m to €4m over the lifetime of the child to care for them.

Ah, it's our old favourites, the "pay now or pay later" and the "only ABA (or chelation or homeopathy or insert crank therapy of choice here) will save those awful, tragic autistics from lifetime imprisonment" canards.

He describes his 7 year old autistic daughter before ABA;

She had no communication skills, she had no language and her motor skills weren't great.
She fixated on objects and she just lived her in own little world.

But after 5 years of ABA, she is a "completely different child."

Well of course she is! It's to be expected that a 7 year old child is completely different from the child at 2!

The last Irish Independent item (for today at least) is the lengthy article written by Brigid Sinnott, MA, BCBA, a senior behaviour analyst. She states that autistic children, or rather the parents of children with autism, "held little hope of their child developing independent skills or going to their local school with their peers." But then, a new dawn, the ABA missionaries arrived with their ability to break everything down into lots of baby steps, and teach these poor creatures how to learn!

She says of the Irish ABA schools;

These schools provide a scientific and intensive approach to education, which results in significantly greater learning in every area, compared to any other type of 'autism schooling'.
These results from our own ABA schools are absolutely in line with international research studies evaluating the effectiveness of ABA schooling.

She then describes how 40%, or 12 of the students at her own ABA school went on to their local schools, She doesn't say what flavour of autism these particular children had on entering ABA, nor whether they are attending local schools without additional assistance or accommodations. I do hope not.

Unlike a lot of other conditions, children with autism present with needs and abilities very different one from another; they do not learn in the same two or even 10 ways. Therefore, the eclectic model, even with its two or three strategies, will not meet the varied learning needs of most children with autism.

I'd like to know what this 'eclectic' model is. Where is it said that it involves 2 or 3 strategies? I agree with Sinnott that autistic children have a range of needs and abilities, and each one deserves an individualised education with dedicated, knowledgeable teachers. This can easily be accomplished without resorting to a fully ABA driven system.

On the other hand, a child attending an ABA school is accessing a curriculum generated by a detailed assessment of their specific learning needs. No two instructional programmes are the same in an ABA school and each programme is continually being adapted, based on the responses of each child, measured on a daily basis, to their programme of instruction. Each child benefits from an education that is not just autism-specific, but specific to their autism and far superior in meeting their needs than any other method.

The detailed assessment and individualised education programme are needed for every autistic child in every school. Parents would be much better served working on that goal. There is no evidence that the ABA method is far superior than any other method.

Most importantly, the way these learning goals are taught is specific to the way each child learns. ABA has hundreds of well researched, tried and tested strategies. This approach is possible because of the high level of expertise of practitioners in ABA schools. Tutors are typically psychology graduates with lengthy and ongoing training in ABA and supervision is provided by certified behaviour analysts.

This is not needed. The expense in paying for all these ABA trained staff could be much better spent on other resources thereby benefiting a much greater number of autistic children.

When a family is burdened and heartbroken with the news their child has autism, and they encounter ABA -- with the learning and quality of life possibilities it has for their child -- this should be the beginning of hope, not the start of a battle.

Well done, you managed to get the crucial devastation rhetoric into the article.

The worst examples of hype, lies and callousness came from TD Ulick Burke, as quoted in a Galway newspaper;

There are over 900 children currently waiting on speech and language therapy in Galway, despite constant appeals to government to provide further resources for autistic children in the West.

If true, this is a disgrace. I wonder how many of these children are autistic? They are being let down by their government, and parents and educators would do well to take the authorities to task over such a lapse.

This shocking figure was released recently following a parliamentary question from Galway East TD Ulick Burke. The recent decision by the government to refuse to fund Applied Behavioural Analysis for autistic children in Ireland has caused outrage and concern among desperate parents, who believe that this treatment is the only way their children will be able to live an independent life.

I'm getting fed up with the implication that my son will never be able to live an independent life, because he has never undergone ABA.

TD Burke says:

They [the government] are essentially saying that every child should be in the mainstream system. There is no research to back this up. There is 40 years of research to show the that just two years of ABA before a child enters school means that they have a 50 per cent chance of being able to take full advantage of mainstream education and live a full life.

What!!
Where have you all hidden this 40 years worth of research? Boy that old Lovaas paper sure does get misrepresented!

Shockingly, Burke continues:

One man I met told me about his son, who has been institutionalised since he was 17 because he didn't get the formative treatment he needed at a young age. He is sitting in a small room for up to 24 hours a day and he will be there for the rest of his life. The stories that you hear are absolutely heart-wrenching and something has to be done about it. All these parents want is what everyone other parent wants, for their child to happy, content and independent. It's just not good enough!

So a man is to be imprisoned in a small room for the rest of his life, for the crime of being autistic! This is a terrible miscarriage of justice. I can assume that the dedicated member of the Republic's Parliament will be working tirelessly for this man, to ensure he is freed from such a fate. It is disgusting that shocking abuses are held up as the alternative to more spending on ABA.

Finally, here's a post I read again recently, describing an alternative to behaviourism in the teaching of autistic children.

ABA for Autism at the Irish High Court

The Irish Independent is really working those autism stories this week. I just read another in-depth family interview, this time with the parents who just lost their High Court case to have state funding of their son's ABA programme.

The journalist starts by describing the little boy whose educational provision is being decided, and claims that the Education Minister would "melt to his giddy charms and be humbled by his brave attempts to enter a world that often seems so foreign and frustrating to him." His Parents face a possible €2m legal bill, but the boy is unaware and sits playing a computer game "with a concentration remarkable for an autistic child.

He he! Doesn't the journalist, Gemma O'Doherty, know anything about what is and isn't remarkable for an autistic child! Playing computer games well is not exactly uncommon!

He is said to be able to speak using single words, but his parents say that his speaking at all is a dream come true.

The article continues;

This week, they faced what many ordinary families would consider their worst nightmare -- the prospect of losing their home to pay off a staggering legal bill accumulated in their struggle to force the State to pay for a form of education for Sean known as ABA (Applied Behavioural Analysis). But instead of dwelling on worst-case scenarios and the prospect of financial destitution, their over-riding priority in this never-ending battle with the Minister for Education is as it has always been: the future of their only son and a determination to save him from a life-time of institutional care.

How dare they imply that without ABA, autistic children will face life in an institution? That is utter nonsense.

Brave dad Cian says;

"They can take the shirts off our backs. We've already had to remortgage our home and that's all we have. We don't have off-shore bank accounts or any other assets. Of course it is a huge anxiety hanging over our heads but our focus is on getting the right education for Sean and that will always be the case.

Why Cian, are you insisting on this specific form of schooling for Sean? Why does it have to be ABA? Couldn't the education budget be better spent providing excellent schools for all autistic children, with appropriate levels of staffing, well equipped with learning resources, toys and computers, with speech and occupational therapists available to work with the children? Why pay for expensive ABA training from whatever organisations offer it? It is not the best form of education for autistic children. There is no evidence to say it is.

So then we have the inevitable depiction of Sean's descent into the hell of autism (sarcasm);

During that time, they have watched their little boy slowly emerge from the shell he crawled into when he was just eight months old.

The early signs were ominous. Sean changed from the happy-go-lucky baby he had been in the first months of his life to a withdrawn toddler increasingly making strange in the world around him.

He stopped making eye contact with the people he loved, and the simplest tasks, such as getting into the car or having dinner, turned into tantrum-filled episodes that took their toll on family life.

He dreaded people touching his hair, and became aggressive, banging his head off concrete walls and glass windows. At 18 months, Sean could no longer respond when he was called. At the age of two, he was diagnosed with autism, but the help Cian and Yvonne presumed would automatically kick in never came.

So many autism cliches do these paragraphs contain, autism as a shell - check, ominous signs - check, becoming increasingly withdrawn, lack of eye contact, tantrums, toll on the family, aggressive, head banging, - checkity check.

Sean was diagnosed as having "mild autism" but was sinking deeper into the autistic state, no matter how much they tried to "pull him out of it."

How much easier would it have been if instead of trying to pull him out, they had tried to meet him where he is?

Well anyway, we're informed that he "moved from having mild autism to moderate" and his parents were suckered by the claims of the ABA promoters.

While critics argue that its success is over-hyped and it places a financial strain on education budgets, ABA is internationally proven to be effective in giving autistic children the skills their peers have by teaching them everything step by step. At least one in two children with autism reaps results from ABA and many go onto mainstream school.

Where, I wonder, is the evidence for this international proof of effectiveness. Where, in particular, is the evidence for the astonishing and new to me claim of that last sentence? Is it possible this refers to the 21 year old Lovaas paper, which relied on physical punishment?

We learn that Sean had 5 hours a week of "autism-specific training" later increased to 15 hours, provided by the Department of Education. He then went to an ABA school which was threatened with closure due to funding problems.

The parents claim that ABA was responsible for all sorts of great leaps in Sean's development. They sound like exactly the changes my own son has made in the past few years; increasing abilities, able to go into supermarkets and even on holiday which would have been difficult when he was younger. How much of that can be attributed to ABA and how much to natural progression? I don't doubt that a good individualised education is crucially important, but it doesn't have to be ABA.

So the O'Cuanachains went to court in 2006;

The 68-day hearing, which was seen as a test case for future provision of education for children with autism, became the longest of its kind in the history of the State. But it produced the worst possible outcome for the O'Cuanachains.

Although the High Court awarded the family €61,000 in damages for the State's failure to diagnose and treat Sean's condition when he was a toddler, it found that the Department of Education had no obligation to continue funding ABA units but could continue to follow its own "eclectic" approach to autism, which involves a number of different techniques.

I really pity this family. They have done all this because they really believe it's the best course of action for their child, but without evidence, there is no reason for the education department to do anything else. The mother says;

"No one comes in and interferes with you about the sort of education your child needs. The Department makes it look as if this is something we want for Sean rather than something he desperately needs. It's like saying someone wants heart surgery when they need it to survive. He has been assessed by experts and they have said this is the most appropriate form of schooling for him."

No, non-disabled children do not get to choose what type of state funded education they receive. They just go to one of the local schools, or they pay for it at a private school, or like us, they home-educate. That's the ultimate way of making sure no one interferes with the kind of education your children get. And no, Sean does not need ABA in the same way a person with heart disease needs surgery. That's an unfair comparison. Who are these experts who have said ABA is most appropriate?

They say they are considering "emigrating to a country where Sean's educational needs would be better met."

Oh where could this be I wonder; Canada? - they wouldn't take them, Canada's autism "advocates" have ensured that autism in Canada is such a feared and unwanted condition, that autistic people are barred from emigrating there. Would it be the USA? They think Ireland has expensive health care, whew. The UK? There are even fewer, if any, state funded ABA schools here.

The mum says she fears "that everything Sean has achieved will be taken from him."

How? He's not going to go back in time. He will keep learning as he gets older, and if they concentrate on teaching him and living with him, he'll keep gaining skills and attainments.

"If Sean was a seven-year-old in Norway, he would be getting ABA no big deal. If he lived in New York state, it would be mandatory.

"Places like that have woken up to the fact that early investment saves so much further down the line.

Oh how I hate that, 'invest now and save later' argument. It's meaningless since there's nothing to back it up with.

It ends;

"We have spent almost all of Sean's life begging and pleading for services that should be his automatic right, but we have no regrets. How could you regret fighting for your child? Anyone would do it. We are no different from anyone else."

They are right. He does have an automatic right to an education. But not to ABA.

Edited to add; there's a post up at one of my favourite blogs, about the pros and cons of ABA.

Irish Autism Advocates Obsession with ABA

Yesterday's Irish Independent contained a story about a family with two children who "suffer from autism."
Both our beautiful boys have autism
How we have coped since discovering that ...

County Wicklow parents Cian and Yvonne O'Cuanachain had battled for 68 days in the High Court for the State to provide Applied Behavioural Analysis (ABA) education for their son, Sean, who is autistic. Last week they lost their €2m fight. The courts ruled they had produced insufficient evidence to prove their case, and said they must meet their legal costs. Their's was regarded as a test case, so the verdict spells bad news for thousands of other parents round the country, including Ken and Janice Berry from west Dublin.

These people were not claiming that their son deserves a good, suitable education. They were claiming a very specific style of therapy, one which is often erroneously claimed to be the only treatment for autism with any scientific validity.

The Berrys, in common with many parents, believe that ABA is essential for the educational and social development of many autistic children.

I take issue when a parent's 'belief' is taken as evidence that vaccines caused autism, or that homeopathy helps autism. I take issue with the statement above too; where is the proof that "ABA is essential to the educational and social development" of any autistic children?

The ruling also places a new question mark over over the future of their son, Aaron.

How? Are they claiming that without ABA his future prospects are diminished?

The article then details the "tragedy" of two autism diagnosis in the family, and the delay in attaining these so that they lost, "valuable time in each case."

The boys are 6 and 5 years old. The 6 year old was diagnosed 17 months ago and the 5 year old, 6 months ago. Since the parents noticed signs of developmental delay in their first son when he was only 2, it is disgraceful that they had to wait so long.

The boys' father says;

"Around the age of two, Cathal went into regression," he says. "He had been speaking, he had been saying 'Mammy', 'Daddy', 'Mammy, drink', then suddenly silence, he began to cover his ears as if he couldn't bear sounds," says Janice.

I'm not sure if this can be described as regression. It seems to be to me to be typical of the way autistic children develop, but correct me if I'm wrong.

They learnt the hard way that parents of children with autism have to wait for everything, including assessment, and the waiting list then was two years plus.

Now this is where I think money should be spent. The Irish health authority, rubbish as it is, needs to take responsibility and start supporting these families early, helping them get the paediatric assessments they need as early as possible, so the parents are not left wondering just what is going on, and will be able to adapt their lives to best support their children.


The elder boy, Cathal, was assessed at a centre opened by a voluntary organisation, Irish Autism Action.

The article continues;

"We were told that Cathal had mild autism. He could go to mainstream school, and needed six hours of special needs assistance at school, as well as occupational therapy and speech therapy. For me, it was like getting the prescription. It was a great relief, like: 'Thank God, I have the piece of paper; now we can do something, we can get on with it'," says Ken. "I was floored. It was pure misery and I found it very hard," says Janice.

I'm not sure what was "pure misery" to the mum, but I'll assume it was dealing with the educational authorities.

So their 6 year old attends a mainstream primary school and has a special needs assistant with him in the classroom for five hours a day. His parents have also converted their attic into a classroom where they work with him using flash cards and educational toys, and they pay for a private teacher teaches him "life skills" four hours a week.

At a reassessment of their son last December, he was diagnosed as having "high-functioning autism."

But meanwhile, the unthinkable had happened. A year after Cathal's assessment, their second son, Aaron, was diagnosed with autism, in a more severe form than Cathal's. Aaron has little or no verbal communication, he also needs speech and occupational therapy, but educationally, he will not benefit from mainstream education. Many children with autism do much better in an educational system called Applied Behaviour Analysis (ABA), and Aaron's diagnosis pointed in this direction. "I mourned Aaron. You mourn the child you will never have," said Ken, as Janice nodded in agreement.

Aaron sounds a lot like Duncan, my own autistic son. As for mourning, I can understand that when your child is autistic, most parents are sad at first, since the overwhelming image of autism in wider society is of a condition that is the closest thing to bereavement on this earth, a terrible burden, a dead soul in a live body, devastating, causes 80% of parents to divorce.
Oh my.
I think this is a good time to promote the essay by Jim Sinclair entitled, Don't Mourn for Us.

The Irish Independent article continues;

ABA, a behaviourist approach to children with autism, was pioneered at the University of California. ABA teaches behaviour modification, speech therapy, social skills training, using short intensive teaching periods, with lots of reinforcement and measurable goals. Such early intervention before the age of five and lasting two years seems to greatly help some children with autism both socially and intellectually.
(my emphasis)

All the above is true, but the key word is seems. ABA is just one way of teaching autistic children, but because something seems to help is not a good enough reason to insist on state funding for this particular method.

The article informs that the younger son, Aaron, qualifies for a home tutor for 20 hours per week.

"It is just a matter of luck that she has ABA experience, and because of this, Aaron is coming along well. She has Aaron dressing himself, cleaning his teeth -- she works one-to-one. The bad news is that we will lose her in June and we have no guarantee that her replacement will have the ABA experience. As far as we are concerned, this will make a huge difference to Aaron's progress and development," says Janice.

I don't understand why they are so concerned that the tutor has ABA training. More important, I'd have thought, is that the tutor has a good relationship with their son, is good at finding teaching moments and caters to their son's learning style, whether that be very structured or not, and that their son enjoys spending time with the tutor. I think they have also underestimated the abilities of their son in saying that the tutor 'had' him making all the progress.

They say they can well understand marriages coming a-cropper where there is an autistic child in the family. "It takes its toll on every single aspect of the relationship.

Here is the obligatory reference to autism's awesome powers of destruction.

Kevin Whelan, CEO of Solas, Ireland's first national diagnostic centre for autism, says

"It has been proven worldwide that early accurate diagnosis, coupled with early intensive intervention, increases the child's opportunity for positive development and success. Up until recently, families were waiting 18 months or more to receive a full diagnosis from the HSE, and longer for an assessment of educational and medical needs. This represents very valuable time lost, which can never be regained."

I'd like to see this myth quashed. There is no time window for intervention, after which the damage is irreversible. Autistic people, like anyone else, will continue to learn and develop throughout their lives.

For reasoned critique of the over-hyped claims of the ABA lobby, read the many articles by Michelle Dawson, a researcher in autism. She recently blogged about a UK paper in which the progress of 28 children receiving intensive home-based ABA intervention was compared against that of children attending an autism specific nursery. All the children were autistic and after over 2 years of the various interventions, there were no significant differences in outcome.

She also addresses the claims that there is good scientific evidence for the effectiveness of ABA, among other places, here.

Daniel Isn't Talking

I happened to pick this up in the local library. 'Daniel Isn't Talking' by Marti Leimbach, is a mother's story. It features the typical account of the mum, this time an American in England, sensing something about her child just isn't quite right, followed by the quest to gain a diagnosis and explanation from a cold and unfeeling medical profession. Even worse, her husband and her hostile mother-in-law are adamant there is nothing amiss with the child saying the mum is worrying unnecessarily.

So anyway, I'm just going to go ahead and reveal the plot of the book, because to be honest, it's not exactly a page turner, and I wasn't enamoured of the whiny Melanie, nor convinced by the astonishing, no, miraculous intervention of the handsome rascal, Oirish therapist, of whom she has to say, 'He makes me laugh and he fixes my kid.' This roll-up-smoking, sexy maverick falls for the mum; ethical qualms about sleeping with your client's mother be damned. Anyway, he's presented as a far better catch for her than the uptight, cheating Brit she's married. That's the gist of it anyway.

So what about the depictions of autism and disability in this novel? Well they pissed me right off. The author has every right to create her character and make her think and say what she wants, but I'm also entitled to react as I see fit, and I didn't like it...with one exception.

Chapter 5 starts, "Do everything you can in life to avoid ever visiting a developmental paediatrician, especially one in the NHS."
She then tells of the unattractive car park, the imperfect decor of the hospital, and even worse the "posters about various conditions - dyslexia, Down's syndrome, schizophrenia - until you enter playrooms full of badly damaged children. These children do not often smile, cannot easily speak, play not with each other but with objects that are not toys." (my emphasis)

In chapter 7, she visits "a supposed centre of excellence for autistic children" and is asked if she wants her son enrolled in their programme. The readers have just been given a precis of the flawed theories of Bruno Bettleheim, and the programme in question uses psychotherapy, so is obviously useless to her, and brave Melanie tells the smug shrinks just that. I wonder why she bothered meeting them in the first place. Later she writes a letter to Bettleheim; "I didn't know I could love so much as I have loved my son, my daughter. Why do you insist this isn't the case? Why do you openly despise me, despise all mothers of children with autism?
...
I would give my life publicly if I thought I could lift from my baby this appalling diagnosis. If it were that he could be normal - just ordinary like other children - I would climb the scaffold myself..." (my emphasis)
Not that Bruno will ever know her thoughts, him being dead and all.

There are many references to the role of vaccines in this novel. Melanie feels guilty for having vaccinated her son and is convinced it contributed to his autism. But, it's a work of fiction, and she can invent causes of autism if she wants. If I was the author, I'd have had my character worrying about eating grapes in pregnancy or some other random and non-related event. (I recently read online somewhere, some tool's theory that children who watch cartoons are made autistic!)

One of the silliest parts of the novel, if we are to think this is based on what might happen in a real life situation, is the meeting between Melanie and a speech therapist. The speech therapist says all sorts of daft things like, "If I were you, however, I'd be thinking about special school and about respite care. You really have no choice." (my emphasis)
I just couldn't imagine any SALT worth their salt (I know, that was pathetic, but I'm not a writer) even saying that. But it gets worse:

"I'm telling you for a fact this is a big one, autism. Regular speech therapists like me can't even touch it.
...
I'm not qualified to treat this kind of thing."

This speech therapist, we are led to believe, has no advice or recommendations to give the mum. Nothing.

This is just bollox.

I know it's a work of fiction, and set in a parallel world where it is likely that vaccinations cause autism, so it's just as likely in such a world that a SALT would have zero advice for the parent of a non-verbal 3 year-old beyond 'put him in a special school.'

But the speech therapist is really just a plot device to introduce us to the lovable Irish rogue and ABA therapist, Andy. He's going to draw Daniel out of his autistic state and fall for his mother. He's expensive, but he's worth it.

Melanie says, "Autism turns out to be an expensive condition. That is, if you treat it."

But what is it she's paying for; ABA therapist, a therapist for herself, a cleaner, bills for private doctors, homeopaths, kinesiologists craniosacral therapists, oh and gluten and casein are excluded from Daniel's diet. Obviously. The only thing in that list of any proven benefit, is a cleaner. Thankfully Melanie can raise cash to waste by selling some of their stuff and she happens to have a spare country cottage.

The book is set in England where the NHS provides free health care so why is she forking out for doctors? There are also free schools and nurseries for those who want them and disability benefits are available though the claims procedure is a nightmare.

At least Melanie did buy Daniel the 'girl's' buckle shoes he wanted, though the dragon-lady sales assistant was over-done.

So I didn't like this book, didn't like how autism is portrayed, the 'devastation rhetoric' used, the disablist language, the improbable love story, the way it's assumed that autism is not just an evil thief of innocent children, but an expensive one at that.

Wouldn't it be nice if there was a book where the child happened to be autistic, which caused challenges and meant that the family had to make choices they might not otherwise have made, but where there was fun and silliness, where education and parenting are deemed all that are necessary to ensure the autistic child's optimal development and where expensive unproven quack therapies are scoffed at, not embraced.

There's a line in the book; "Other people don't have children with autism. They're not entitled to have an opinion."

Well I do, and I am.

P2P Autism in Northern Ireland

The Donna Williams Belfast lecture was sponsored by a new Northern Ireland autism group; 'P2P Autism Support Group'. Their logo consists of 3 puzzle pieces, encircled by the words, 'Parent 2 parent working together to support educate advocate'. Their leaflet was handed out to everyone who registered for the lecture. It's second paragraph started with, 'Estimated rates of autism in the UK now stand at 1 in 58.'

Uh oh. That sounded familiar. After the lecture, I asked some people who were part of the P2P group, where this figure came from, and was told it came from a report by the Children's Commissioner dated March 2007. I mentioned that it was also quoted in the recent (appalling) Observer article. But no, I was assured that the report pre-dated that article and was available on-line if I wanted to check.

(I did check the Children's Commissioner site later, but could not find this report. If anyone can enlighten me, I'd be grateful. I did e-mail P2P (p2pautism at yahoo dot com) asking for clarification of the figure, but have not yet had a response.)

The information on the leaflet continued, with several good points;

Those of you here today working in the education and health systems will know that you are under immense pressure at meeting the needs of most of our children, many of whom are undiagnosed and are not receiving the help they deserve. Those of you who are adults or who know of adults who have an Autistic Spectrum Condition will be painfully aware of the need for change in terms of employment and independent living opportunities.

By then I was thinking, maybe the 1 in 58 slip was an aberration, that this group really did have the best interest of all autistic people in mind, and perhaps I could get involved.

The next bit talked of 'the current self-fulfilling prophesies that abound regarding Autism' and how the "professionals" present autism in a way that 'is often negative and sometimes soul destroying.' Then it stated that autism isn't a disease and there is no "cure", but that the new paradigm is that it is "treatable". Children worldwide are being successfully 'treated for their individual "Autism's".' (There were many words in quotation marks in this short document, and 'autism' was always capitalised.)

What followed, clarified that this is not a group I'll be joining.

Approaches such as biomedical interventions address the gastrointestinal problems our children commonly suffer from, as well as their detoxification, allergy and immunity issues, all contributing to so-called "behaviours". In the rest of the UK many parents together with their informed doctors are treating Autism as a medical issue, because their children have real medical problems, problems often ignored.

How often must it be said, if your child has medical issues, SEE A PROPER HEALTH PROFFESSIONAL! Get it sorted, and that applies whether the child is autistic or not.

Finally, the document told of thousands of books and organisations on the internet, even doctors and teachers, who think of autism as treatable. But 'this shift has not reached these shores.' (Thankfully, thought I.) Professionals were then encouraged to listen to parents, to keep abreast of currents autism research and to buy books about it.

Also available at the lecture, were copies of a UK based magazine called 'The Autism File'. I was once given a stack of these, when Duncan was almost 3, and I was briefly seduced by all the miraculous 'recovery' stories contained therein. Gordon was unconvinced, and after a bit more investigation, it was clear that none of the 'treatments' mentioned had any scientific validity. I dumped the magazines in the recycling bin.

However this time, I took a copy home to read about the latest trends in the UK autism biomed world. Interestingly, it contained an article by the chair of the NI 'P2P Autism Support Group', Karen Buchanan.

She began by bemoaning the poor standard of services for 'children with ASD's' in NI, which she reckons is a legacy of the terrorist violence and political unrest we suffered under for 30 or so years. Here, I am in agreement.

She wrote;

Children with ASD's continue to be ignored, and segregated en masse into "special" facilities using cheap, mediocre, and in my view, damaging teaching methods.

I don't know what teaching method she holds to be 'damaging', but I would agree that the education system is not supporting autistic children properly, that parents have to fight bureaucracy to get a Statement of Educational Need and to have the proper provision supplied. There is not adequate funding, training or understanding.

Later she wrote;

On the medical side of things, paediatricians love to dazzle vulnerable and uniformed parents with Wing's now passé and wholly inadequate "triad of impairment" explanation of autism and its concomitant "deficits". This is meted out with the most depressing and singular fatalism, that autism is a debilitating and lifelong "disability"; that parents should just make the best of what they've been "given" and simply get on with it.

I don't doubt that there are some doctors who act as she describes. Such relics must be brought up to date. The diagnostic process needs a total overhaul, in terms of speed, who provides the diagnosis, how it is presented and what advice is given. Personally, I have met with several paediatricians, a speech and an occupational therapist, a clinical and an educational therapist since I moved here. They were all knowledgeable, helpful, respectful to my views and decisions and willing to learn from me (wrt home-education in particular).

There also seems to be a cultural difference in Northern Ireland of not wanting to bring attention to ones self and/or complain. Over and over again, I have witnessed parents of autistic children reluctant to tackle the education boards or their children's doctor for fear of "causing a fuss". I am originally Canadian and though I have lived in Belfast for 15 years, I find this hard to fathom, coming from a country that celebrates the "individual". I do not share other parents "unhealthy" respect for doctors either, doctors who are generally ignorant of autism, and worse, are afraid of their own ignorance.

Well, it's an interesting anthropological study of the local population. I'd actually concur with several points raised. Parents do need to stand up for their children, and not accept sub-standard education or health care. However doctors know a heck of a lot more than others about medicine, and if I'm not happy with what I've been advised, I'll take a second doctor's opinion over the knowledge of Google.

I personally didn't accept anything I was told at face value when my boy was diagnosed two years ago. I knew he was ill and he needed help fast. He has been on a biomedical intervention protocol (DAN) since the day after diagnosis. He was in an ABA (Lovass) program for 12 months. He has had AIT training, Verbal Behaviour, sensory integration vision therapy, the HANDLE method and now we are pursuing Sonrise.
...
After advising my son's paediatrician that we would be pursuing the biomedical route and after asking for certain blood tests to be done, the doctor implied "child abuse". This doctor did not have any comment about my son's raw excema or the fact that he was constipated for weeks at a time or that he was constantly developing strange viruses.

This doesn't make sense to me. It sounds like her son had genuine medical problems as well as autism. How would the doctor 'not have any comment' about eczema and constipation? Did she ask him? Doctors see these problems with children every day. Is she saying that the doctor somehow ignored her request for treatment of these things, or implied that they were somehow linked to his autism? If he did, it sounds like she should have complained, and we know she's not afraid to do so.

Anyway, her son underwent a gamut of interventions, non of those mentioned specifically have any proven benefit. I'm always interested in people who drop ABA for Sonrise, since they seem to be virtually opposite approaches. (Sonrise, for those who don't know, is a USA based cult, where you go on a hugely expensive training course, and learn how to 'love' the autism right out of that child.) Anyway, the article continued;

I thank God for the internet. Like so many other parents the internet has provided me with a wealth of support and information, that was impossible to access in real life. I now know parents from all over the world. It says a lot that parents must learn from their computers in lieu of their doctor's knowledge.

I think the internet is marvellous too, and I also communicate with people worldwide. It's also really cool to be able to use resources like Pubmed when evaluating some of the absolute crap you read.

Well, it goes on to talk about how P2P autism is new and fantastic and is going to shake the place up, and ends with;

As a "biomed" mom, who only cares about what is good for my child ad for other children like him, I personally will not rest until terms like "methylation cycles", "leaky gut syndrome" and "yeasty poops" become part of the vocabulary of every "autistic" household in Northern Ireland. I also will not rest until parents like me are provided real choices about how to educate our children, and are given the means to pursue those choices. Watch out Northern Ireland, the Troubles are over, but more trouble is on the way via parents who are getting organised.

Wow! Get ready, cause here they come!

It's the DAN missionary, out to convert the natives to the true path of righteousness and clean guts. I can understand that some reckon this stuff has helped their own child, but why do they need to proselytise?

I'll just advocate for my son, in my own way thanks.