A Post to Guardian Dad For Autistic Kid

Content warning- disablism.

Yesterday the Guardian published a letter from a man to his autistic son entitled, A letter to … my son, who has autism, for whom I’ll always do my best. Read this at your peril as it is truly vile.

With just a few deviations, this letter follows the tried and tested Assembly Manual for Autism Articles ^TM  which I created in 2008.

Guardian Dad starts off describing Autistic Kid's arrival into the world, how he felt "total, unconditional love" and envisaged watching Autistic Kid "grow up, go to university, find love, then maybe settle down and have his own family." The thought that Autistic Kid might not want to follow such a path doesn't seem to have occurred to him.

He then weirdly complains about his own parents' choice to leave Autistic Kid "half of everything" in their wills. Is this because Guardian Dad wanted it all for himself?

Then, following stage 4 of the autism article template, "the parents realise the child is somehow different, something is not quite right" Guardian Dad describes how Autistic Kid "didn't play very well [...] flitting from toy to toy, with no concern for the people around you and ignoring any child who engaged with you."

I would speculate that Autistic Kid was playing differently not badly and it's impossible to say he lacked concern for other people. Autistic Kid's other kiddie crime was to "only talk to adults when [he] wanted them to do something" so we know he communicated via speech. Anyway, it turned out that Autistic Kid is autistic.

Then Guardian Dad for the second time in a 700 word article, expresses how he hates himself for being right. Despite his professed aversion, he sure wants us to know about his rightness record.

The next section is outrageous and warrants a content warning. Remember this is aimed at a six-year-old child:

"You love your mother, which is good – because you make her life hell. Without your outward signs of affection towards her I don’t know if she could maintain the abuse you put her through. I've watched a loving, kind woman become a tired, hard, uncaring, dispassionate bitch. But all this is aimed at me, with you only getting the occasional frustrated tone, or at worst a sigh of irritation. 

She loves you with all her heart, but that means there is no room for anything else. She will fight for you until her last breath. But any type of intimacy between the two of us has vanished. In six years she’s aged 20 while I’ve put on 30lb and have become more isolated than ever. I hold back as much as I can, but sometimes I snap. I’m sorry. I know it distresses you when we argue, and I hate myself for doing it."  [My bold]

There is so much wrong with this. Guardian Dad ignores the power relationship between a small child and an adult couple. The child is not abusive- he isn't using coercive behaviours to maintain power and control over the parents. He has a developmental disability that affects how he perceives and interacts with the world. He may well have multiple sensory sensitivities. And believe me, Autistic Kid is picking up on how Guardian Dad feels about him and his mother.

I am disturbed by Guardian Dad's venomous depiction of his wife and the revelation that he sometimes snaps and argues with his wife though he knows it distresses Autistic Kid.

Guardian Dad feels "bereaved – for the family I should have had. I am a good person and this should not be happening to me." He talks about how he thinks about leaving. Poor Guardian Dad, my heart bleeds for him. He was owed a more perfect life than this with a faulty child and a tired, hard, uncaring, dispassionate bitch for a wife. And he got fat. None of this is his fault, oh no he's a "good person". We know this because he says it though he doesn't share anything that shows it.

"But we love you more than ever. You’re not responsible for any of this – it’s your disability. We know that you try your best, but you become confused and anxious about everything that is going on around you.  Neither your mother nor I know what the future will hold, but we still feel the same way about you today as that first time we saw you."

Guardian Dad is blaming Autistic Kid even though he knows that the world is a scary place for him. Writing this letter to a public forum is not a loving act. It adds to the mountain of anti-autism rhetoric that will only serve to make life harder for Autistic Kid, my own son, and all other autistic people.

Guardian Dad absolves himself from all responsibility. He resents the time his wife spends with his son. He directly places the blame for life not turning out how he wanted it to on the shoulders of a disabled child.

If he had written this to his therapist that would be ok. If he had written an article expressing how he finds it difficult to father his autistic child and described some of the problems they had faced, that would also be fine- so long as he didn't blame the kid. If he had described how social security cuts are impacting on his family and how he has to fight for support I would applaud him. If he had come to me in my work and shared these thoughts with me I would have encouraged him to figure out what he could do to make things better and helped him get appropriate support from various agencies. But Guardian Dad wrote a very public letter even if it is anonymous. His sense of entitlement and self-absorption shine through every paragraph. The Guardian would never have published a letter from a father blaming their small non-disabled child for all their problems.

Autistic Kid didn't get the father he should have. I would like him to know: you keep on being your own awesome autistic self and I hope that one day you will know there is a community out there who will welcome, understand and embrace you.

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. 

What kind of people commit violent crimes?

Last week two of the most beloved and significant people in my life were victims of a violent crime. Their home was violated. It was a vicious physical and verbal attack. I shake with anger when I think of what two grown men did that night to people who are only ever kind, helpful, supportive and loving to their family and neighbours. It shakes you to the core when something like this invades your family. I want to do the impossible; turn back time and stop it from ever having happened. The people I love will recover from the physical assault. It will take longer for the psychological damage to repair. They have their family, friends and community around them giving support in any way they can. I can't express how grateful I am to these good people for what they are doing to help. I hope the police catch the perpetrators- they are dangerous men who ought to be locked up where they can't hurt people for criminal gain. I never use the word scum to describe humans but for them, it fits.

In the past few days, certain sectors of the media have claimed (with no evidence to back their assertion) that autism is linked to violent crime. No folk, it's not autistic people we need fear, it's abusers, scammers, bigots, zealots, entitled and over-privileged arseholes, thieves and thugs. They're the people who will do whatever it takes to gain what they want and to hell with the hurt and damage they cause other people, the people who really lack empathy. Autism is not a crime.

Action not Awareness for Autism

It's World Autism Awareness Day and autism is all over the papers and radio. Some of the stories are great such as this by Fiona O'Leary, an Irish self-advocate explaining why she opposes the Light it Up Blue campaign and seeking an end to negative rhetoric:

"Any research that will bring positive benefits to people on the autistic spectrum is welcome. However, the propaganda used by Autism Speaks is instilling fear and hatred about a condition that is struggling to find acceptance in society."

Some stories attempt to tug at the heartstrings such as the story of a 9 year old girl who wrote in school about her dearest wish- that her 4 year old brother be cured of his autism. In her letter she describes her brother's sensory issues as well as the efforts those who care for him are making at improving his communication skills using Grace App. The little girl comes across as very insightful and caring. It seems to me that she uses the words "cured" and "healed" as shorthand for educated and parented so as to help him to have the best life possible. It's just a shame that the media have jumped on her story as though autistic kids' lives are a tragedy and the only way to help them is to seek a cure.

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

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

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

Ryan with his beloved Granda. 

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

Autism Biomed Bullshit Booming in Ireland

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

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

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

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

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

This article follows the tried and tested Autism Article^TM template as described below.

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

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

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

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

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

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

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

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

From Belfast Telegraph autism article, May 8, 2012

From Belfast Telegraph autism article, May 8, 2012 Click on the picture to enlarge.

And my life is now complete, I have shared a page in a newspaper with Rocky.

Soaring Autism Children

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

Last week, several newspapers published articles on increasing numbers of children in schools having diagnoses of autism. Among these were:

• Daily Telegraph: Number of children with autism soars by more than 50 per cent in five years
• Daily Mail: Number of schoolchildren classified as being autistic soars by 56% in five years
• Irish Independent: Number of children with autism soars by more than 50pc in five years
• Parentdish: Some parents claim their kids are autistic to gain advantage at school, claims expert

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

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

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

Furedi is quoted in each of the articles as saying,

"It is unlikely to be a genuine unprecedented increase in autism, rather an institutional use of this condition to allow people to get easier access to resources. This activity ends up trivialising what is a very serious condition for some children."

That's the opinion of a man with zero expertise in autism. He presents no facts to back up his claims and he can quite easily be ignored.

The CRE spokesperson says,

"Obviously children with autism need special treatment. But the rapid increase does suggest that perhaps the figures should be looked at again.
Children should not be classified as having special needs too easily. The rise should be examined closely because it has a knock-on effect for teachers, schools and the pupils themselves."

All children need special treatment. Children with a disability require accommodations to give them access to a good individualised education adapted to maximise their learning. This happens for some people but most autistic children in schools are not getting the support they deserve.

The CRE philosophy on education is set out here in their manifesto for common sense.

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

They have a section on "Special Needs" 

When the proportion of pupils with genuine special needs is probably only around 5%, the educational establishment's acceptance of 20% or more is intolerable.[5]

Recommendation: Immediate steps should be taken to reduce the artificially high percentage of 'special needs' by ensuring that only those that are genuine are specified – and properly catered for. The widespread practice of exaggerating special needs to gain additional funding should be halted. 

Clearly I checked out reference [5] to see where those numbers come from- and was baffled to find that it was an old article by Minette Marrin in the Daily Telegraph. For real! This is what counts as reference-worthy to the CRE.

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

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

The NAS spokesperson makes a typically sensible contribution to the discussion:

"We know that with accurate diagnosis the right support can be put in place so that children with autism can reach their full potential. It’s very likely that all teachers and school staff will come into contact with children with autism at some stage during their teaching career, so it’s vital that they receive quality training and strategies to support these children in the classroom."

As usual the comment sections on these articles descend into a mire of anti-scientific, disablist nonsense.

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

Charlotte Moore on Autism

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

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

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

My favourite lines from the article follow:

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

The Good News According to Tony

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

Tony Humphreys said something that can't be left unopposed. This is what he claimed was his good news message. He told the interviewer, Claire Byrne:

"when I wrote that article, Claire, I thought this was good news. I thought that I was going to ... that parents would be relieved ... "I haven't passed any neurobiological defect on to my children, or any genetic defect." The news now is that there are creative possibilities if we examine everything in our own lives and our children's lives, we may now discover, "Oh My God, this is what may help my child and myself to have a deeper relationship."" (Emphasis mine.)

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

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

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

For that reason we do well to avoid the quacks and snake-oil salespeople who promise creative possibilities for problems we don't actually agree that we have.

Claire Byrne Interviews Tony Humphreys

On Saturday I listened to Claire Byrne interview Tony Humphreys on the Marian Finucane show. It was the first media appearance the disgraced psychologist has made since publishing his vile column in the Irish Examiner, apart from some quotes in that paper in which he reiterated his notions while claiming he never intended to hurt anyone.

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


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

"I was absolutely overwhelmed, because my intention was to bring good news to people but that somehow what I said was very much misinterpreted as my blaming parents and if anybody knows my work over the last 20 years I have always said parents always do their best. Parents never deliberately neglect their children. But we all come into our roles whether as parents or teachers or childminders, other adults [unclear] with our own hurts and our own unresolved issues and these operate at an unconscious level and what's been hugely missing from the whole controversy is that we operate unconsciously we never consciously want to hurt anybody, right, or neglect our children and not love our children."

This cracks me up. Like a missionary, he sought to bring "good news" to the unenlightened. I can't wait to find out quite what this is. He then claims that all his many critics are at fault as we have "very much misinterpreted" his words. Nope, the problem isn't that we have poor reading comprehension, but that he wrote a terrible, parent-blaming, diagnoses-denying, inaccurate and illogical article. He says what is "hugely missing" is that we, the parents whom he reckons have the magical ability to train our children to be autistic, are doing this without being aware of our actions. Poor Tony, he seems to think we object to his twisted thesis because it hurts our feelings. Well it does, but that's not the point. We object because it is bollocks.

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

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

"I DON'T BELIEVE IN AUTISM"!!!!!! This is a position of faith, for this man evidence is irrelevant and facts don't count.

"I think one of the other things I want to say Claire, is that you know, eh, in my work over the last thirty years, ehm, my work has always been about compassion and understanding and empowerment of people and I was shocked, right, absolutely shocked at the level of hurt out there and, um, in my experience a huge sadness around that because I would never, never wanted to create that in any human being, right and so ... and also I have suffered my own hurt in, you know, in being seen as somebody who would want to cause hurt because actually it's light years away from what I would want to do."

Again with the self pity and the refusal to accept responsibility and the consequences for the harm and hurt he has caused. Instead he is sad at how he has been portrayed- such a consciously selfish and immature reaction. He continued to try to justify his self-serving behaviour as "opening a debate". No he isn't, he is disagreeing with well established explanations of autism, that are backed up with proper research and evidence.

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

"Um no, well not only at the parents right, but it's not pointing the finger, in other words ... I've worked with many parents over the years, children ... parents with children. Labelling them with ASD, ADHD and the other labels that children get, right, and when parents come to me, I hold ... that I ... if they are in troubled places, my first response is to where they are at, right, and to look at what they are carrying and the hurts they're carrying and to resolve those hurts. As those hurts are resolved, they automatically change in their relationship with their children. Now it's not just parents who are in relationships with children. Every one of us is in a relationship with children and that old village, that old African saying, "it takes a village to raise a child" is so accurate because it takes a whole society to raise a child and child minders and teachers and peer groups all affect children's' concepts of themselves."

So he accepts that he blames parents and all adults involved in raising children but somehow thinks this is not pointing the finger because, presumably, all these errant adults are failing their children unconsciously. The thing that Tony doesn't seem to get, is that neglecting children will harm them, but it won't make them autistic! People who are autistic were not made that way by how their parents raised them. He reiterated his notion that we, the parents of autistic people, need to get over ourselves and sort our own issues:

"But we all carry baggage, we all have major defences and unless we get the holding in relationships, we don't examine our defences, and to examine our defences is very challenging in a judgemental culture."

After more waffle he passed judgement on how we fail to respond to our children's communication.

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

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

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

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

"there's a whole huge body of research out there. But I can understand, right, that people who have believed a certain thing for many years, it's very difficult now to have that suddenly challenged, right, and I have no trouble with sitting with these people and hearing where they are coming from once they also give me the freedom to also to say where I am coming from"

I doubt that Tony Humphreys would really want to sit with me and hear where I'm coming from. He pulls a freedom of speech defence too, asking us to allow him to say his piece. Sure, he can hold whatever bizarre notions he wants, he can think that autism is caused by extraterrestrials if he wants, he just shouldn't teach that at a reputable university, to influence people who may well work with these disabled children, or to be held up as an expert and given a column in a national newspaper. My dog knows more about autism than Tony Humphreys.

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

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

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

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

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

Excuses Not Apology from Irish Examiner and Tony Humpreys

The saga continues. The Irish Examiner today have Tony Humphreys' words in their paper, as both the paper and the disgraced "psychologist" attempt once again to excuse the damaging and error-laden autism article. Unfortunately they do not offer an apology or a retraction. In direct opposition to the what they published on Friday, today's piece has the title, "Parents ‘never to blame’ for autism." and is by Conall Ó Fátharta. Well Conall, that's been known for about 50 years, but nice of the Examiner to finally catch up.

Dr Tony Humphreys said parents were "never to blame" for autism and his intention was simply "to inform and enlighten" the public of research in the area.

Tony Humphreys needs to be clearer- he needs to say, "On Friday I had an article published in which I directly and unequivocally claimed that bad parenting causes autism.I was wrong and I apologise."
Because that is what happened. This is just more bullshit spin. He was not attempting to "inform and enlighten" he was making a claim he had zero evidence for.

He has been severely criticised for his article in last Friday’s Irish Examiner which gave the impression parents were to blame for their child’s condition. Yesterday, he said he never intended "to hurt anybody".

The article did more than "[give] the impression parents were to blame for their child’s condition" in the article he made his opinion perfectly clear- parents are to blame for their child's condition.

Tony Humphreys is quoted:

"My intentions were honourable. I wanted to inform the public of up-to-date research that is there. It was never my intention to hurt anybody.
"I have the greatest compassion for parenting. It is the most important profession we have in society and one which we get the least preparation for. We don’t prepare parents for the complexity of what is involved."

I care not what his intentions were, I'm interested in the facts and the very real effects. If he hadn't intended to hurt anyone he should not have written his toxic, damaging article. He did not inform the public of up-to-date research, he was rehashing a theory comprehensibly discredited 50 years ago.

Dr Humphreys said he simply wished to show research that had proposed a broader examination of autism rather than focusing on it as simply a genetic neurobiological disorder.

"There are complexities and intricacies of family life that didn’t come through in what has been said.
"What I wanted to inform people of is that we need to look at children in a broader sense and look at every aspect of their lives, every relationship they have, at their social and economic experiences, rather than just focusing on a hypothetical, neurobiological defect.
"I wanted to point out that we should look at every aspect of a child’s life in order to truly understand why children behave a certain way," he said.

Tony Humphreys informed people of nothing but his own prejudice and ignorance. He may have seen this going differently in his imagination but thankfully, I don't live in Tony Humphreys' head and the reality is, he hasn't a clue what current research says. His buff about looking into the families of children with autism counts for nothing. Is he going to have someone poke into the "complexities and intricacies" of everyone's family life? We know from his other writings that he thinks parents cause all sorts of conditions from IBS to asthma, so Tony Humphreys would probably say yes, lets examine the dynamics of every family in the country and check they adhere to some state mandated level of love and support. That's bound to work.

At a public meeting in Cork last night, a mother of a five-year-old boy with autism confronted him but he refused to elaborate on what he had written in the Irish Examiner, and said he had already given his response to criticism.

Well done that mum. He has given a response, but it is totally inadequate.

Dr Tony Humphreys responded to comments on blogs and social media websites which questioned his professional background. He pointed out he had a BA (hons) and MA (hons) in applied psychology from UCC and a PhD in clinical psychology from the University of Birmingham.

Dr Humphreys worked for eight years with Mid-Western Health Board psychiatric services and for two years in Staffordshire Health Authority in Britain. He also has 20 years’ experience as a courses director and lecturer in UCC.

His qualifications do not protect him from justifiable criticism. Parents of autistic children, autistic people themselves and professionals with a real knowledge and understanding of the condition are united in their criticism of his piece. Knowledgeable, experienced and skilled psychologists, both educational and clinical, have expertise on autism and can be incredibly helpful to families. I have had valuable input from these professionals at various stages. Tony Humphreys is bringing the profession into disrepute. Parents may be put off using their services in fear of finding others with stone age views like Humphreys.

I also am very concerned that a man with his views is allowed to teach anyone and the reputation of UCC is damaged by its connection with this man.

Irish Examiner Responds to "Autism Controvery"

After all our letter writing, tweeting and blogging, the Irish Examiner today published their response. It is wholly inadequate. They have published an editorial basically saying that they were correct to publish the article because, they say, in a democratic society, everyone has the right to their opinion. It's nice of them to offer us all a civics lesson. I shall however, examine their editorial in detail.

They published wonderful letters from parents and people critical of the article. There was also a letter from Waterford music therapist, Jim Cosgrove in agreement with Humphreys. I wonder is he has any autistic children as clients. I wonder if he still will after today.

There is an excellent article by Kevin Whelan, the chief executive of Irish Autism Action, refuting the article and describing the reality of parents and families struggling and coping as best they can with unbounded love and determination. Lastly, Tony Humphreys is once again given a platform for his opinion in a piece entitled, "Research is crucial to care debate." Research is, conjecture ain't.

IN ALL my work over the years in supporting families with their very real difficulties it has been clear to me that parents always do their best; it would be an act of neglect on my part to withhold information, because information is a very important source of support.

It is now clear to him that parents always do their best, a far cry from the defamatory statements he made on Friday about how parents seek help for their children only to avoid looking into their "own emotional and social struggles" and that we "often need more help than [our autistic children] do."

But what is this information he has such a duty to impart?

My intention in last Friday’s article was to give people information that has emerged in recent times in relation to troubling behaviours in children that are commonly called autistic spectrum disorders (ASD). This ASD perspective has dominated and has been presented as fact. My goal was to show there is another perspective on this and that what has been presented as fact is not fact; it is simply a perspective. It is very important we hold an open mind and keep ourselves informed.

Aw here, why are all of us who have autistic family members getting so stressed, he's only wanting to offer a new perspective. We may have struggled for years to have our concerns about our children taken seriously, and may have navigated the complex diagnostic system and sat with our children through many difficult multidisciplinary assessments before they received the diagnosis. But we shouldn't be so damned closed minded, we ought to listen to Dr Tony- there are no facts, there are only perspectives! Duh, it must be those broader autistic phenotyoes some of us have that limit us to black and white thinking. We probably believe in gravity and the germ theory of disease, dismissing all alternative perspectives!
This is preposterous, Tony Humphreys is rejecting reality.

The seminal work in 2011 The Myth of Autism by Dr Sami Timimi, consultant child and adolescent psychiatrist, and his two colleagues provides very important findings from rigorous research and scientific enquiry. Incidentally, Dr Timimi and one of his co-authors had been diagnosed with ASD when they were children. In the interest of responding effectively and caringly to both children and their parents and teachers, it is crucial this research-based information be taken into account.

Oh it's a seminal work! Can I argue with that. Well, yes. 
The authors he places so much faith in disagree with his assertions, saying "We are NOT saying any of the following: 1. Autism is a condition caused by poor parenting." Moreover, real scientists refer to peer reviewed scientific publications from respected journals when citing research, not popular science books. Mike Stanton has explained, the book was only "a mixture of reviews of certain areas and detailed analysis of particular papers."

Humphreys concludes;

There are very important policy and care decisions involved here. If we can stay open to different perspectives and engage in mature debate, our chances of coming up with the best solutions for what are very real difficulties in family and school holding worlds increase enormously.

Basically, he has taken lots of words to say very little. Why should policy and care decisions be influenced in any way by the discredited model of autism Humphreys promotes? You may as well have astrologers running the judiciary. Nonsensical.

Worse yet is the editorial from the Irish Examiner: "The right to an opinion."

They acknowledge that people were hurt and angered by the article, and mention the criticism they faced then go on to make much of Tony Humphreys credentials as an expert:

Dr Humphreys is a highly experienced and well-regarded clinical psychologist, successful author, and broadcaster.

They mention their "record of campaigning for the rights and services for people with an intellectual disability" and finish:

While we regret and are sorry for the obvious hurt caused by Dr Humphreys’ comments, we stand by his right to freedom of expression in a democratic society, just as we would support the rights of others to disagree with and criticise his views and criticise us for having published them.

So basically, we're sorry you lot took offence and complained because we were only doing our democratic duty to give this dude a platform to express his views.

What I'd like to know is, given that they have mentioned his expert status, and that his article was published in a health supplement, why are they now portraying it as just one man's opinion?
So which was it, expert reportage or opinion?
The piece was ridden with errors, not one bit of it stands up to any kind of scrutiny. Even the Cambridge researcher mentioned by name has called the piece "offensive" and said it "turns the clock back 50 years". Tony Humphreys does not have the right to create a loads of "facts" that are harmful to so many people. Clearly despite the credentials the Irish Examiner is so in awe of, Humphreys is no expert on autism. In fact if that is the level of journalistic standards they adhere to, why don't they get me to write farming reports, or as my friend Lisa suggested, David Irving on foreign policy.

If it is just opinion, and the Examiner feels it is their democratic duty to publish any opinion no matter how factually incorrect, toxic, damaging and hurtful, can I expect to see a parade of bigots getting their chance to have their views aired in a major newspaper? Because after all, we have the right to disagree and criticise them for publishing.

This editorial has made a bad situation worse. This is not over.

Tony Humphreys Toxic Autism Article

Tony Humphreys' awful article has been criticised in several places. Lisa wrote how reading it made her feel she had:

stepped into a time warp that has taken us back to the 1950's when Autism was blamed on so-called "refrigerator mothers" whose coldness towards their children caused them to be developmentally delayed and socially withdrawn.

She also makes an important point about Humphreys' academic pursuits:

Disturbingly I found out today that he lectures on "interpersonal communications" and "parent mentoring" at University College Cork. So potentially there is a student being indoctrinated with these ideas right now.

I have emailed the Vice President for Teaching and Learning at University College Cork and The Centre for Adult Continuing Education, asking them to investigate this matter, writing:

Dr Humphreys even goes so far as to assert in his article that the very existence of autism is not a scientific fact, an utterly ridiculous assertion. These are toxic, false and damaging ideas. It is very worrying that a university of such repute would allow someone holding these views to teach particularly on courses taken by parents and those training to work as Special Needs Assistants.

I look forward to hearing their response.


I had emailed Professor Simon Baron-Cohen yesterday to alert him to the misrepresentation of his research in Tony Humphreys' article. He was kind enough to reply that he was going to tweet a public response;

He wrote, "Offensive Irish article blames autism on unemotional parenting and turns the clock back 50 years http://tiny.cc/ffxg8"

It doesn't look good for Tony Humphreys when the researcher he quoted in support of his theory is willing to condemn his article publicly.

Where I focussed on the inaccuracies of his article and the harm they will do to parents, especially of newly diagnosed children, Siobhan O’Neill wrote about growing up with her autistic twin brother, demonstrating clearly how nonsensical Humphreys' notion that a parent can make their child autistic really is.

Another post at Three Mile Limit took issue with factual errors in Humphreys article and offered to give him a name for his  hypothesis, "Refrigerator Cousin."

Mike Stanton examined more closely Humphreys' claim that the "Myth of Autism" book he referenced backs up his notions and found that not even this was true: 

Skip to page page 293 when the authors clearly state

We are NOT saying any of the following: 1. Autism is a condition caused by poor parenting.

That is concurring with Humphreys attack on parents who possess few or no heart qualities? It seems only right that ill-written books should be ill-read. But, bad as it is, The Myth of Autism does not deserve to be as badly read as it was by Tony Humphreys, if he read it at all.

Bock the Robber writes about Humphreys former role as a cleric:

the denunciation of parents in the article of Tony Humphreys has a smell of clericalism about it.  This article sounds a lot like the sort of judgemental nonsense we heard from priests and bishops over many years.

After listing the errors in the Examiner article he makes a valid point:

If you're a scientist, present your research.  Publish your research papers.  List the peer-reviewed publications you've produced.
If you're not a scientist, don't presume to talk about things you don't understand.

If only we lived in a world where it worked like this.


The last post I have noticed is by Magnumlady who writes:

We are living in a world where it’s hard to get by if you have a disability (especially an unseen one) and are trying to get people to understand about autism. It’s not helped by articles like this.

I quite agree.

Many people have expressed their hurt and shock at the Irish Autism Action Facebook page where the article was transcribed. 

Eventually The Irish Examiner made a response, of sorts. This afternoon they released the following on twitter:

"We will be publishing a full range of reaction in tomorrow's edition relating to Tony Humphrey's column in Friday's Feelgood." link

"While giving a platform to diverse opinions is central to our journalism the views of TH on autism should not be mistaken as our own." link

(The irony that a piece which made so many feel so rotten was published in a section entitled "Feelgood" is not lost on me.)

I find it astonishing that the Irish Examiner feels this is an appropriate response. No one who has complained that the article is damaging and toxic believed that it was an editorial. It was not clearly marked as an opinion piece.  Even if it was, it was irresponible and unethical to give a platform to such a piece, lacking as it did all veracity and which has caused real harm.

Already I have witnessed the people who argue that there must be something to Humphreys' arguments- that there are too many children labelled, that diagnoses are made too quickly, that perhaps parents need to look at themselves- as if we don't! None of this is based on fact- but newspaper articles like this one make it harder for families to convince people that their children's disabilities are real and that they require adaptations and support.
 
The Examiner have contacted some people who emailed them (not me) and asked permission to publish their letters. It appears they will be hosting a vox-pop, as though there is any doubt that Humphreys wrote an article entirely lacking merit. He was mistaken, the paper should apologise and retract the piece.

 Please let me know in the comments if there are any other posts I may not have noticed yet so I can add them to the list. Thanks.

Autism Ordure in Irish Examiner- Why Worry?

I was asked- why bother asking for a retraction and an apology for the vile Irish Examiner article by Tony Humphreys. I agree that any apology the disgraced psychologist gives would most likely be insincere. I still think it is important to contact the newspaper that opted to actually publish his outrageous and damaging piece. I want to draw attention to what this man has said, to explain clearly all the things he got wrong in his article. That his words were published in a newspaper will give them a veneer of truth and respectability to many people.

I have been in touch with a few people whose children have only recently been diagnosed with autism and who were particularly upset by the article. In those early days you are dealing with so much; coming to terms with changed expectations, the knowledge that your child faces difficulties typically developing children don't, learning about disability and your child's rights and how to navigate the complex worlds of benefits and special education. Currently it is harder than ever as cuts and reduced services make everything such a battle and people are struggling to adapt and survive. These parents have not yet developed a thick skin like those of us well accustomed to the charlatans who use autism to advance their agendas. The quacks have no regard for how they will affect people living with autism or those who love them. It can come as a shock at first when you read about how awful your life is, how damaged your children, how they are to blame for all your problems- or, with retrogrades like Tony Humphreys, how you are to blame for all their problems.

This article was so bad though it even hurt many of us hardened old-timers. It hurt to hear a so-called professional get it so very wrong about our families, to slander us by claiming that instead of doing our best for our child/children with a neurological condition causing developmental delay, we caused it. And we caused it by failing at the one thing that matters most to us- our parenting. He tells the world that we are cold and unloving, that we seek help for our children to avoid our own issues.
What tosh.

Now having a disabled child certainly doesn't make anyone a perfect parent. I've witnessed some bad behaviour from the parents of autistic children in my time among the online autism communities. But we're just like any other set of people, we're fallible, some good some bad and most trying our best to be good enough.

By issuing an apology, The Irish Examiner could go some way towards making ammends to all the people they have hurt.

I wrote the following to the editor:

I wish to respond to the article "Core Connection" by Tony Humphreys and published on 3 February 2012.

This article author propagates damaging and discredited ideas of autism causation. It is accepted by all professionals of repute that autism is a neurological condition associated with developmental delay. It is not, despite what Tony Humphreys professes without evidence, the result of children "defending themselves against the absence of expressed love and affection and emotional receptivity." Blaming parents causes pain to people already struggling to raise their children in a time of cut-backs and reduced services. Parents of newly diagnosed children will be especially vulnerable to these outrageous and contemptuous accusations against them.

Tony Humphreys even goes so far as to assert that the very existence of autism is not a scientific fact, an utterly ridiculous assertion. He is no brave maverick going against the tide of received wisdom, he is a mere crank. The author is either courting controversy to sell books and gain more media exposure and is using your paper to promote himself, or he is setting himself up in a new career as a provocateur columnist. Either way, he and your paper, are trampling all over the families of autistic children.

I shall expect you to publish an apology and a full retraction of this article, and to give space to a proper autism professional to explain just how wrong Tony Humphreys was. I shall also expect to see the parents of autistic people given space to explain just how loving and close their families are.

I have also contacted Professor Baron-Cohen to alert him to how his work has been twisted to fit Humphrey's notions.

I now think that Humphreys is hoping to not just promote himself and his book at the expense of autistic children, he is hoping to gain customers seeking to redress their failures as parents and fix their children. The biomedical quackery industry have seen parents willing to subject their children to all sorts of unproven and dangerous "therapies" when told it would lead to a cure. The psychoanalysts want some of that action. In order to sell their services, they have to convince enough parents that the cause of their children's autism is known and fixable.

What I fear now is seeing Tony Humphreys making a tour of TV and radio stations, promoting himself, his book and his ability to cure the children currently "misdiagnosed" as autistic. I hope the media will do the right thing and refrain from giving this man further publicity.

Irish Examiner and Tony Humphreys- A New/Old Theory of Autism

I've been justifiably angry often lately. First there is the Welfare Reform Bill that will cause real harm to disabled people and those already poor and vulnerable. Much of the media and many politicians have been busy spinning the truth about people's lives and impairments to portray people who require support as scroungers and layabouts, out to milk the system. Then there was the quack clinic, purporting to prevent and cure autism in infants showing "pre-autistic traits" and which received uncritical publicity in the media because celebrity Melanie Sykes gives it support.

But with this my ire boils over and if I don't blog a bit to release the pressure, I fear I may blow.
A man called Tony Humphreys has written an article available in the print edition of The Irish Examiner on February 3 2012. The article has been reproduced in full here. Humphreys describes himself as "Ireland’s most influential psychologist" and he runs courses at University College Cork and All Hallows College, Dublin. To read his article however, you would be forgiven for thinking he has absolutely zero knowledge or experience of autism. It ranks as one of the worst and most detestable diatribes relating to autism I have had the misfortune to read and given that I have been examining the world of autism quackery and myth for 10 years, that's really something special.

He starts by referring to the work of  Professor Simon Baron-Cohen and the Cambridge Autism Research Centre saying that "the children and grandchildren of engineers were more likely to be autistic." But then Humphreys expresses shock that these researchers are "assuming that autism is a scientific fact".
Yes really, we can stop right here and know that Ireland's most self-regarding "influential" psychologist has the gall to call into question that the very existence of autism. The latest version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is currently being produced. Perhaps Humphreys should contact them and inform them to leave autism out since he clearly knows something all the other professionals don't.

Though he has already shown himself to be ignorant of autism science, I shall soldier on because Humphreys decides now to slander all parents of autistic children but also all engineers and scientists by claiming that as we all "live predominanently in [our] heads and possess few or no heart qualities, [our] children will need to find some way of defending themselves against the absence of expressed love and affection and emotional receptivity".

Ouch.

The Irish Examiner has thought it right to publish an article in which the author denies the existence of autism and claims that the children currently diagnosed as such are merely reacting to their cold and loveless upbringings.

He continues:

After all, the deepest need of every child is to be unconditionally loved and the absence of it results in children shutting down emotionally themselves because to continue to spontaneously reach out for love would be far too painful.

Children's wellbeing mostly depends on emotional security - a daily diet of nurture, love, affection, patience, warmth, tenderness, kindness and calm responses to their expressed welfare and emergency feelings. To say that these children have a genetic and/or neurobiological disorder called autism or ASD (autistic spectrum disorder) only adds further to their misery and condemns them to a relationship history where their every thought and action is interpreted as arising from their autism.

This is a rehash of the comprehensibly discredited "refrigerator mother" hypothesis of autism. The truth is that autism is lifelong developmental disability that affects how a person communicates with, and relates to, other people. 

Humphreys next asserts that parents seek help for their autistic children to avoid examining their "own emotional and social struggles.
...
it is their adult carers who often need more help than they do."

Humphreys further exposes his ignorance by distinguishing incorrectly between "the autism described by psychiatrist Leo Kanner in 1943 and the much more recently described ASD (autistic spectrum disorder, often referred to as Asperger's syndrome)."


These two are the same thing. He next spins the gender differences in autism diagnoses to fit his notion of autism as caused by cold, unloving parents.

Mike Stanton blogged about the Sami Timimi book Humphreys refers to next. Read Mike's post for a thorough assessment of Timmini's assertion that the autism "label should be abolished".

Humphreys concludes: 

The authors are not saying that the children are not emotionally and socially troubled. What they are saying is - and I concur with them - that focus needs to be on the relationship contexts of these children's livews, and to take each child for the individual he or she is and to examine closely the family and community narratives and discover creative possibilities for change and for more dynamic and hopeful stories to emerge for both the children and their carers.

Dr Tony Humphreys is a consultant clinical psychologist, author and national and international speaker. His book 'All About Children" is relevant to todays article. 

Humpreys decries the autism industry, though he clearly wants a bit of that action for himself. He has a book out that is "relevant to today's article" and it sounds like he reckons we need people like him to examine our narratives. Nought like a spot of old fashioned psychoanalysis to sort out our selfish ways, eh Tony?

Or perhaps Tony Humphreys is just looking for a spot of provacateur columnist work like Kevin Myers, Rod Liddle, Jan Moir and Liz Jones. Either way both he and the Irish Examiner should be thoroughly ashamed of themselves. I shall expect a retraction and an apology.

Andrew Wakefield Verdict- Guilty

Guilty

The General Medical Council has ruled that Andrew Wakefield, one of autism's most notorious False Prophets and quintessential brave maverick doctor is guilty of having "showed a callous disregard" for the suffering of children and has "abused his position of trust."

According to The Guardian's report:

Wakefield also acted dishonestly and was misleading and irresponsible in the way he described research that was later published in the Lancet medical journal, the GMC said. He had gone against the interests of children in his care, and his conduct brought the medical profession "into disrepute" after he took blood samples from youngsters at his son's birthday party in return for payments of £5.

The doctor, who was absent from today's GMC hearing, faces being struck off the medical register. The panel decided the allegations against him could amount to serious professional misconduct, an issue to be decided at a later date.

It's a damning verdict. This man should be ashamed of how terribly he has used autistic children to make a name for himself. He cares more for the adoration of the deluded and confused who flock around him at the autism quack conferences like he's Jo Jonas or something thinking his use of their children means he cares or can help. No one should let this man anywhere near their children, autistic or not. He has caused a shit storm of harm to autistic people by leading the troops describing the condition as vaccination damage, with all the negative rhetoric they propagate. Thousands of parents were confused by the reporting of his crappy paper and his lack of dignity and honesty in refusing to admit that it was a fair cop even when it came out in public that he'd totally fixed his results. He is responsible for so many people choosing to avoid vaccinating their children; the subsequent rise in measles cases caused death and disability in children when it could have been avoided.

I'm a Mummy and I'll vent if I want to

I am so sick of this. There are some people who choose publicise their feeling of rage, hate and shock at having given birth to autistic children. On Gonzo's blog I read about one woman's horrible bile-filled blog post about her daughter. This child is 8 years old. Her mum describes her as "recovered from autism" whatever that means. But this girl still causes her mum so much pain because she just isn't how she's supposed to be (link broken deliberately). The mother complains that her daughter isn't into dolls and make up, but prefers to goof about, play computer games or ride a scooter. I mean, how dare the child resist the gender role assigned to her. If she doesn't start with the make up by 8 she'll never know how to apply liquid liner properly.

But mum has more to say. She is jealous of the parents whose children have cancer! She wanted to punch her cousin in the face for sympathising about another cousin's child going through surgery, because her troubles were bigger; "my [recovered] daughter's MIND, HEALTH and LIFE’S POTENTIAL were stolen and I’ve had to figure out how to pay for them and get them back on my own! Don’t fucking talk to me about surgery! Where was my basket of cookies and flowers, Sorry about the Autism, Get Well Soon? Oh yeah, didn’t get one."

It's not good enough. It can't be right to get off on vitriolic hate speech about your own child like that.

Then this morning at Cat in a Dog's World I read that that Mummy venting had struck again. In a New York Times blog, a woman with a son with Asperger's felt free to tell the world how rotten her life is because of the way her son behaves. She blames all of this on his autism. Does she think this venting will make her life better? Does she think her portrayal of what is titled "the unvarnished reality of autism" will increase understanding of autism and autistic people or will it, as I suspect, make the public ever more fearful of those with an atypical cognitive phenotype? Some of what she describes is society's reaction to her son. I face the scowls when I'm out with Duncan too but that's not his problem but that of the mean ninnies who judge him and me.

She even says, "my son has been doing much better lately" but still tells her tale of woe as if it's all still happening.

I cannot say that her son is not as hard to live with as she says, but there are lots of children who are not autistic who are bloody hard work too. Choosing to become a parent means you have to expect the unexpected. Autism, or any disability, doesn't necessarily have to bring pain and suffering to parents. Different people react in different ways to difficult situations. While I am stressed and upset at times by things I must deal with, some of them related to my son's autism and some not, I don't see my life as a litany of horror. I get over it and keep going as best I can.

What she describes is NOT the unvarnished reality of autism, it's just how she chooses to characterise it.

I also disagree with the implication, by "it's time to stop mincing words" that until now, no one was telling about how horrid autism really is. That's nonsense. There are newspaper articles nearly every week by parents and siblings venting about how terrible the autism is and how it's ruined their lives. We have children's charities depicting autism as a monster. Massive USA autism organisation Autism Speaks released a staged film a few years ago which was all about how haaard life is for women with autistic offspring. Quack cures are featured on health pages, along with pictures of grim faced parents describing that they just had to try the calcium stripping chelation drugs/chemical castration drugs/homoeopathy/shaman therapy/exorcism/chiropractic manipulation because life was too awful before. Loads of books have been published giving insight into the "real and raw" suffering of these parents. How the hell can any of these people claim that they need to speak out and share their pain as if it's not been told of hundreds of times in very public places before?

And aside from how this affects the perception of autism in society, how do you think all this gross negativity affects the people being described? What will my son feel when he's old enough to understand the depth of hate that exists towards people like him? Oh this is something I fear.

Sarah expressed carefully and with compassion, her feelings on the New York Times blog post. Her letter was published. It's wonderful.
But I feel like giving up when I read the comments on what she had to say. Over and over again people are disparaging autistic people in the harshest terms, accusing them of lacking empathy because they express hurt when someone writes about how they destroy normal people's lives.

I still feel shock at the hate filled garbage thrown at Sarah for daring to write. She is damned as not autistic enough to comment, as mentally ill, as complaining over nothing. It's a box ticking exercise in seeing how privileged groups diminish the voices of marginalised people.

Edited to add, Bev has a typically marvelous post up on all this and Sarah has responded to the commenters. I have yet to read it, but I look forward to her annihilation of their ill formed arguments.