9 May 2012

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.

2 Apr 2012

Awareness, Acceptance, Action

Today is World Autism Awareness Day and marks the start of Autism Acceptance Month.
Awareness is a useless, nebulous concept. Only acceptance, action, understanding and support matter. I would like to see the day rebranded as Word Autism Action Day.

I oppose the "Light it up blue" campaign for autism awareness as it is an Autism $peaks backed movement calling for funds to "research into the causes, prevention, treatments and a cure for autism". I'm not going to support an organisation dedicated to eradicating autism.

However I am as impressed by the UN Secretary-General's message for the day as I am critical of that from the Vatican. Leaving aside the unfortunate but ubiquitous puzzle-piece imagery illustrating the piece, Ban Ki-moon has a good understanding of autism and the needs of autistic people. He realises that autistic children become autistic adults, a simple enough concept you may think but one so often ignored:
"Our work with and for people with autism should not be limited to early identification and treatment; it should include therapies, educational plans and other steps that lead us towards sustained, lifelong engagement."
I applaud all of his message but particularly like:
"Greater investments in the social, education and labour sectors are crucially important, since developed and developing countries alike still need to improve their capacities to address the unique needs of people with autism and cultivate their talents
World Autism Awareness Day is meant to spur such action and draw attention to the unacceptable discrimination, abuse and isolation experienced by people with autism and their loved ones.
Let us all continue to join hands to enable people with autism and other neurological differences to realize their potential and enjoy the opportunities and well-being that are their birthright."

It's not what we have now but we can create this world. We autistic people, parents, friends and supporters, those who are accorded the label of allies; we are tough, tireless and committed. OK, we are in truth often exhausted, overwhelmed, frustrated and worn down but we keep on going because we have to. We either know what needs to happen or know how to listen to those who have personal experience. We can advise, campaign, advocate and shake things up until it's right. We can support each other, learn from each other and keep working on advancing the civil rights of autistic people.

Today as on everyday, my boy will be happily autistic. I love him to his core, I don't wish a part of him away because that would leave a different child, not the one I gave birth to and have raised for almost 12 years. Today and always, I accept autism.

1 Apr 2012

Vatican's Autism Message

They've never heard of the social mode of disability down at the Vatican. This is a breathtakingly backwards view of autism. Archbishop Zygmunt Zimowski, get in touch and I'll set you straight on a few things.
Here's his take on autism:
"On the occasion of the Fifth World Autism Day, the Church intends to express her nearness to those who are burdened by the weight of this profound suffering. In large measure still to be explored, autistic spectrum disorders constitute, indeed, for those who are affected by them, a grave alteration of behaviour, of verbal and non-verbal communication, and of social integration, with a wide-ranging effect on the normal development and evolution of the personality."
(Emphasis mine)
WHAT!? Such disdainful, othering language. The problem, Zimowski thinks, are the disordered, abnormal "gravely altered" autistic people.

I wonder if he ever knowingly met an autistic person or did he just ask Tony Humphreys what they're like? If he spent any time connecting with a few autistic people himself, he might realise how wrong he is when he says:
"In this pathological movement of self-envelopment and closure to the other and the external world, the Church sees as impelling the task of placing herself at the side of these people – children and young people in particular – and their families, if not to breakdown these barriers of silence then at least to share in solidarity and prayer in their journey of suffering. Indeed, this suffering, at times, also acquires features of frustration and resignation, not least because of the still scarce therapeutic results. These frustrations are to be seen, in particular, in families which, although they look after these children with loving care, experience repercussions as regards the quality of their own lives, and are often, in their turn, led to be closed up in an isolation that marginalises and wounds."
Such florid nonsense.
This is a 45 year old Bettelheim-era and utterly discredited vision of autism. Autism doesn't mean closure to the outside world. And what barriers of silence is he talking about? I know some autistic people who don't speak but none who are silent. Not all autistic people are children. Not all families with autistic members are closed up, marginalised and wounded.
Zimowski continues:
"The Church and all people of good will thus feel committed to being ‘travelling companions’ with those who live this eloquent silence, which calls upon our sensitivity towards the suffering of others, following the emblematic example portrayed in the gospel parable of the Good Samaritan."
"Eloquent silence". Oh wow.

It's too awful to go through this line by line but here's a selection of words this pillar of the Catholic Church uses to talk about autistic people like my wonderful son. To the archbishop they have:
  • "a pathology which affects more people in numerical terms than could have been imagined only a few years ago"
  • "the gravest and most devastating disability"
  • "a grave psychological disturbance"

And they are:
  • "people with autistic disturbances"
  • "enveloped in the mystery of silence"
  • "a living and transparent sign of the presence of the Resurrected Christ in the world." 
No Archbishop, they are people living with a disability in the same real and right-now world as everyone else. They deserve, like all people to be treated with kindness, respect and decency. They do not require your pity or your depction of them as disturbed and mysterious ciphers. They need to be listened to, understood and accepted. It's not difficult.

25 Mar 2012

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:
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."

14 Feb 2012

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.

10 Feb 2012

Half Hearted Apology from Irish Examiner

The Irish Examiner today repeated the half-apology they made on Tuesday but have still failed to retract the article. An article is published in which they share the Psychological Society of Ireland's condemnation of the article and their disagreement with Humhrey's views.
The Psychological Society of Ireland (PSI) has described as "unhelpful and likely to cause upset" comments by clinical psychologist Tony Humphreys that inferred parents of children with autism were to blame for their child’s condition.

Mr Humphreys made the comments in an article published in this newspaper a week ago. They have been criticised both by fellow experts and parents of children who have the condition.

"It is grossly inaccurate and demonstrated a clear ignorance of the most basic understanding of autism and autism spectrum disorders (ASD)," said Brigid Sinnott, manager of ABA and Autism Services in St Catherine’s Association.

Dr Humphreys has since said parents were "never to blame" for autism and his intention was simply "to inform and enlighten".

PSI president Michael Drumm said: "Tony Humphreys’ assertions are not supported by the vast body of published research in the field of ASDs and are unhelpful and likely to cause upset."
ENOUGH of the guff about what Tony Humphreys intentions were- lots of people do harm unintentionally but they should still be held to account.

Here comes the apology bit:
Irish Examiner editor Tim Vaughan, in an editorial earlier this week, apologised for the hurt caused by Dr Humphreys’ comments.

"His comments have caused enormous upset for many parents and relatives of children with autism and I very much regret and am sorry for this," said Mr Vaughan last night.
This is a classic non-apology. Tim Vaughan is sorry, not for the actions of his paper, but for the reactions we have had to it and I do not need Tim Vaughan to apologise for me.

I think it is the best we can hope to get from this newspaper. I think they have a very skewed sense of decency and ethics. Tony Humphreys is back writing his pcychobabble column in today's Irish Examiner Feelgood section. And again his topic of choice is "love." I have not had a chance to read it yet but have it good authority that it adheres to the man's usual standards of expression, logic and accuracy.

Let us not forget that this is not all about autism. A bit of searching has shown that this man has pontificated on all sorts of serious conditions: asthma, IBS, cancer, schizophrenia, tonsillitis. The Irish Examiner have taken his columns on IBS and asthma down from their site. Yet they still employ him to write as an expert in their health supplement. I find this astonishing.

The Irish Examiner have a very skewed sense of journalistic integrity and ethics. However I read that Alan Crosbie, chair of the group which publishes the paper, at a recent conference on media diversity in Dublin, called on the governmant to:
"address the threat to humanity posed by the tsunami of unverifiable data, opinion, libel and vulgar abuse in new media.”
Isn't it ironic.

9 Feb 2012

Excuses Not Apology from Irish Examiner and Tony Humpreys

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.

8 Feb 2012

Tony Humphreys in Irish Examiner- Parents to Blame for Asthma

I wondered why the Irish Examiner editorial was so keen to protect Tony Humphreys and to continue to promote him as a "highly experienced and well-regarded clinical psychologist, successful author, and broadcaster." Then I discovered he is a regular columnist in their Feel Good heath supplement. I read a few more of his column, they usually say the same thing- parents don't love their children unconditionally, indeed bad parenting abounds and causes all ills. Here is his take on irritable bowel syndrome (IBS). The PDF file linked to may not open, but I have saved a copy.
As regards IBS, when exploring the psycho-social aspects of the dis-ease (word reads more accurately when hyphenated), it is important to understand that the psycho-social intentions of the dis-ease will be different for each person who has the condition and that for a particular person the intentions will differ each time the symptoms reoccur.
For instance, the unmet needs of a sufferer of IBS when a child or a teenager will be very different to those the person has when adult. Unmet needs — physical, emotional, social, sexual, intellectual, behavioural — are the sources of most problems in living, lack of loving being the most common. (Emphasis mine.)
He also pontificates on asthma. Asthma is a serious and potentially fatal condition. According to Asthma UK, on average, 3 people per day or 1 person every 8 hours dies from asthma. Only experienced and properly qualified people ought to write as experts on such a condition. But here is non-expert Tony Humphreys writing in the Irish Examiner and giving his unique "perspective" on asthma:
The causes of asthma are not known and the suggestion of a genetic link is too remote to be seriously considered. Certainly, environmental causes have been posited — dust mites, pollution, over-heated homes — but these don’t ring true because most people who are exposed to these same physical environmental threats do not develop asthma.
The environmental threats that are far more prevalent for children are emotional and social. The home is the most dangerous place for children to be — the threats they may daily encounter are physical, sexual, emotional, intellectual, behavioural and social — the greatest of all being the absence of unconditional love.
Again the PDF link I give isn't working for everyone but I have copied the article and taken screengrabs.

This is so dangerous and wrong. Tony Humphreys is a menace and the Irish Examiner has even more explaining to do. 

7 Feb 2012

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.

6 Feb 2012

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 "

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.

5 Feb 2012

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.

4 Feb 2012

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".


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.

23 Jan 2012

Books by the Boy

Lately the boy has been drawing and editing pictures using his huge cast of characters to tell stories. He's fascinated by heroes and villains and works through his ideas via photos, videos and drawings. He made a book by printing out the following pictures, cutting and tapping the pages together. It looked perfect. I wanted to store and share these pages Duncan (to resurrect his old blog name) created. He is Robin 3D/Ryan, his friend is Zunarmy/Isaac and his brother is Sezon.

Front cover

Cast of characters