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.

Post for #BADD: Stop Excusing Murder

Trigger warning for discussion of child murder. Please call your emergency services or local crisis support number if you need immediate and urgent help.

Samaritans UK 08457 909090
Samaritans Ireland 116 123


This is a post for Blogging Against Disablism Day 2014.

Disablism means discriminating against people due to their disability. It's unjust and unfair. Disablist attitudes abound in our society and worsened in the past few years as a result of robust campaigning by certain political parties and media outlets depicting disabled people as lazy, scrounging cheats.

Disabled lives are accorded less value than the lives of people not currently disabled. This even applies to children. I've been appalled over the years by the steady stream of news stories about parents killing or attempting to kill their disabled children. And each time the tragedy of a life lost is portrayed as understandable because, after all, the dead disabled person was such a burden. The parent who killed the child is described as devoted, loving and most of all, long-suffering.

Last week it happened again. In England, 4 year-old Olivia Clarence and her 3 year-old twin brothers, Max and Ben were found dead in their home and their mother Tania has been charged with their murder. The 3 young children were killed while their father was abroad with their older sister.

I first read about this awful crime via an article in The Independent with a headline describing the woman subsequently accused of murder as a "devoted mother". On social media outlets, people rushed to defend and explain Tania Clarence's actions. The justification as far as they are concerned, is that the dead children all had type II spinal muscular atrophy, a genetic condition that can cause fatal respiratory problems and shorten life expectancy. This is just a small selection of tweets about the case. Try to imagine how they would read if the murdered children did not have a medical condition or disability:

So sad. You can't judge unless you are in that life, don't try - just have some compassion http://t.co/HEVcDj9hzA
— Hannah Cock (@drhannahrc) April 26, 2014

Thoughts are with Tania Clarence who must be going through hell. It's awful what she has done but equally horrific for her and her husband.
— Dava Roopchand (@Dava73) April 29, 2014

Pity @SantoshVKalyan received abuse for tweet re. Tania Clarence euthanising her kids. An issue that merits discussion, not demonising.
— Jacques Rousseau (@JacquesR) April 29, 2014

"@margiedgander: Feel very heartbroken by the story of the Clarence family #TaniaClarence"...> Only a #motherslove can explain it
— Al Zoya (@Al_Zoya) April 28, 2014

Tania Clarence - who killed her three terminally ill disabled children, was a devoted mum, but couldn't cope & cracked under the strain.
— catherine henderson (@catsatwork) April 27, 2014

Especially vile was the follwing tweet from a South African MP:

I and many others retweeted this with criticism which caused her to think again about what she had written. A few days after posting it she deleted the tweet and apologised for having offended people saying she didn't mean it and that she's a nice person. I'm glad she apologised but that doesn't make up for an MP thinking it was correct to share that awful opinion in the first place.

There's a Mumsent thread in which the mother accused of murder is accorded nothing but pity with posts on the "terrible" and "intolerable" burden she had faced, and in which she's referred to as a  "Poor, poor lady...hope she's getting the support she needs."

On a post on Irish site The Journal some are attempting to justify the murder of 3 children aged 3 and 4 years old with comments such as, "The children all had genetic life limited conditions . Maybe she wanted to end their suffering. No one knows what it is like to watch your children dying." and "Unless you can walk in the shoes of a mum with a sick child, let alone three sick children, you cannot possibly judge her actions."

I do not need to walk in anyone's shoes to know that murder is wrong. These children had their most basic human right taken from them. What happened to them is cruel and despicable. It is no less wrong than if they were typically developing little kids. When people explain the murder of disabled children as resulting from caregiver burnout or limited service provision, they are putting blame on the victim. Many if not most crimes are committed by people in desperate situations and those criminals don't have countless supporters asking us "to walk in their shoes" and "not to judge". As Paula C. Durbin-Westby wrote (on the all too frequent murder of autistic children by their caregivers),

"No one finds it necessary to defend people who murder because they are poor, stoned, broke, or in other difficult situations. And they certainly don't blame the victim. And they don't ask you to walk in the murderer's shoes. And they don't tell you to shut up if you won't."

So I will continue to judge and to work towards a society in which disabled people are respected not treated as burdens and disability is recognised as part of the human spectrum of experience.

Please Don't Light up Blue for Autism

You mean well. I know you hope that by persuading your local council to bathe your town or city's most significant building or monument in blue light, that you are doing a good thing. You have bought into the notion that increasing "awareness of autism" will help your autistic children. But do you know where the notion of "light it up blue" originated? Are you aware how people who are themselves autistic feel about this particular campaign?

April 2nd has been marked as World Autism Awareness Day since the late 80's and in 2007 it was adopted by the United Nations. Light it up blue came along later; in 2010 it was set up by Autism Speaks, a huge and disreputable USA-based organisation. Autism Speaks seeks a world without autism, it does not support autistic people, but bullies and silences them. Autism Speaks regularly makes outrageously hurtful and damaging statements. Many in the autistic community call for a boycott of the organisation.

Blue is the corporate colour of Autism Speaks, that's it. Blue is not associated with autism for any other reason. When you lobby to light up blue or you "wear blue for autism" you are demonstrating your support of Autism Speaks the organisation, not of autistic people or their needs.

Autistic people and their allies are trying to get the word out about how damaging the light it up blue campaign is.

I ask that you take their views seriously and stop lighting up blue.

Is This Autism?

[Warning-  in this post, written in support of the This is Autism flash blog, I've quoted some of the dehumanising language used by Suzanne Wright.]

I don't get to say what autism is. I'm not autistic though my thirteen year old son is. In learning how to parent him, I've met other autistic people, read their words and I've listened. I'm qualified to say what my son is like, how his awesomeness and autism intersect. I'm also authorised to say that the wretched "Call for action" edict by Suzanne Wright, co-founder of enormously wealthy and powerful, USA organisation Autism Speaks, is revolting, damaging and does not represent my son or my family. Nor does it tally with anything I have learned about autism in the past 11 years.

Autism Speaks Co-founder Suzanne Wright after some fantastical Photoshopping  

"This is autism" Suzanne claims three times in a piece filled with falsehoods, bigotry, hate and a total negation of the existence of autistic adults. She does not represent my family when she says that we are "not living" but are merely "existing". Such hubris! She honestly thinks she can speak for all of us. She invents statistics; "2.3 million [US] dollars to care for one person with autism for their lifetime" and "Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help."

I'm offended and contemptuous. My son's existence isn't adding to a crisis, he's no national emergency. He's a disabled young person with his own challenges and talents and it's my job to raise him. Autism is part of the naturally occurring diversity of human experience. Unlike Autism Speaks, I don't want a world in which we "make autism a word that we only see in the history books."

Sure I am often worn out and I worry about and struggle to understand my children- all three of them, autistic and non-autistic, just as most parents do. Autism brings more challenges to the mix and I have had to battle with service providers and education departments to have my son's needs met. I've weathered the stares and comments of judgemental strangers. What hurts and exasperates me most of all though, is dealing with the perpetual dehumanising of people like my autistic son. He's a great kid- if you are ever lucky enough to meet him you'd see that. He doesn't deserve to have his very humanity constantly called into question.

Living, not just existing

I will do all in my power to prevent Autism Speaks from gaining a foothold in Ireland and the UK. I request that anyone who has ever contributed to that organisation now withdraw their support and that academic departments think very hard about whether to accept funding from them. An organisation that spreads this rhetoric of fear and hate ought to be shunned.

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.

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.

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.

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.

I CAN'T Wait

Duncan had another appointment with the dentist this morning. Lady and Thomas have both started school now (more on that later- but it's going well) so it was just the two of us. The 1st time we were at that dentist it was a huge struggle to get him in the building. He stood outside crying for ages while I tried to reason with him. We made it into the waiting room where The Tweenies was playing on a tv, henceforth that room was known as "The Tweenies Room." Duncan utterly refused to leave the room so the dentist came to him and after Thomas modelled the procedure, Duncan consented to allow the dentist a brief glimpse inside his mouth right there. On the next visit he made it to the examination room but not onto the chair, though he did enjoy moving the stuffed dinosaur with the big teeth up and down on the chair. Then the dentist got another kick look but didn't see much. Today however Duncan was an absolute star. We entered the Tweenies Room and he dashed about a bit checking out the books and wall posters, seemed pleased that there was no smoking allowed, then got ready to leave again. An old woman and a younger man, probably her son, arrived. The man might well have been autistic himself. Duncan was restless and I said several times, "we will wait."
"I can't wait!"
"Look at the door, read the sign. This is a waiting room."
He read it and seemed a bit happier to do what the sign said, for a while at least. He got ready to move again and I said, "wait for a little while. The dentist will be ready soon."
Duncan replied softly, "I don't want to wait. Listen to me, pal!"

I just asked him about the book he had picked up. The woman most have had very acute hearing as she snorted a bit then said, "oh, that's a strange thing to say."
Now was thinking that her sticking her nose in was strange, but reasoned that she might not have known better and said, "it's a phrase he picked up from a video. He doesn't know what it means." (I regret saying that with him right beside me now.)
"Well one thing I will say, in my day we respected our parents."
"That's nice. He respects me and I respect him too."

We were called to the dentist then. I suppose I should be glad she only felt it was her right to comment on my son's words and wasn't tempted to stick a pen into his or my eye unlike the wish expressed by a "home-schooling" mother I read about on Liz's blog. This "christian" (I won't capitalise the word, this woman doesn't deserve it) clearly hasn't heard about "suffer the little children." It's hard to believe she could possibly be so ignorant about autism as she obviously is for unless she's living as part of an able-bodied people only cult, she surely knows of other non-school educated families with autistic children; there's loads of us out there!

But forget her, my boy did well today, Lady and Thomas are settling and happy in their new school, I'm off to Galway for the weekend. It's going to be just fine.

Words, language, attitudes and actions

There's a campaign to encourage people to rethink the words they choose to write and say. Today, March 3 2010, has been chosen as a day to focus on these issues.

Words matter, language matters. When people decide to use as slurs and insults, words that originated as diagnostic labels for various disabilities and/or for various categories of mental illness, real and manufactured ("hysteria") then they contribute to a culture that marginalises people. Disabled people are dehumanised by these words. A society that tolerates the use of slurs like r*t*rd and sp*st*c as equivalent to stupid, useless, pathetic, hateful or annoying, legitimises the hatred that leads to the abuse, murder, forced drugging and sterilisation and discarding of so many disabled people in this country and all around the world.

Some people whine about the "language police," "PC gone mad," their "right to free speech" and how "no one has a right not to be offended." They make a case to keep insulting, belittling, minimising and dehumanising people like my son who have developmental disabilities just so they can slag off their mates or sound hip and cool on someone's blog or YouTube comments. But if someone wants to keep acting like an entitled and callous arse, that's their call.

There's a fantastic series on Ableist Language at the FWD/Forward blog discussing specific words, their origin, the damage they can do and suggesting alternatives. As expected, the usual arguments in favour of the right to offend and destroy and display your laziness and lack of consideration say whatever the hell you want are raised. These are deconstructed in this great post.

There's one argument the non-creative who prefer to keep right on insulting and degrading developmentally disabled people use that isn't in the list. It's the "euphemism treadmill" argument, and it's explained in this blog comment;

This sort of process (words becoming offensive and being replaced by new terms that end up becoming pejorative over time only to be replaced by more and more cumbersome and ridiculous expressions and so on and so forth ad infinitum) is known as the euphemism treadmill. And people who keep insisting on keeping this treadmill going are fucking retards (I hope the actual innocent retards forgive me for using this innocent word pejoratively).

The Blog owner responded to this inanity with, "Fucking right!"

Can I have a facepalm?

OK, that's me shut up then. I wouldn't want to contribute to the "euphemism treadmill." Keeping all hip and raging against the PC police is far more important than listening to the people whose lives are directly negatively affected by your words and committing to making a few simple substitutions.

My understanding of what this commenter calls the "euphemism treadmill" is the positive effect of disability activists who have influenced the language used to describe people with their attributes. "Wheelchair bound" is out because people who use wheelchairs find the term fucking ridiculous and limiting. If people who are blind prefer not to be referred to as a "the blind" and people who have epilepsy quite reasonably don't want to be called "epileptics" then should those of us who are not in these groups get all bothered by their "disgraceful assault on our right to speak as we see fit"? Should we return to a more paternalistic era (as if this one's not bad enough) when we allowed doctors, psychologists educators and others with power-over to dictate the terms used to describe people, or might it be seen as fairer that, as people gain more agency over their lives, they and only they have the moral authority to dictate the language used to describe these lives.

There's more about this on Here Be Dragons post; Ban the R-Treatment:

A lot of people think that The R-Word campaign is just about a disablist slur, but it’s the medicalization of atypical learning and social behaviour that’s dehumanizing, hence the basis of all slurs for people considered inferior are medical terms which caused the euphemism treadmill in the first place.

Another thing about the previous comment is the distinction made between the "fucking r*t*rds" behind this drive to substitute language that demeans with the language of their choice and the "actual innocent r*t*rds" whom s/he hopes will forgive such pejorative use of this "innocent" word.

FAIL!

They're the same people, these "innocents" and the ones who annoy you (and confuse you?) so much with their attempt to improve they way they're discussed and to stop people using using their discarded diagnoses as the epitome of the put down. And what makes them "innocent" anyway? They're almost all adults so in all likelihood, they're as much of a sinner as you or I! I hate this trope that developmentally disabled people are seen as innocent and child-like even when they're full grown men and women. It's another way in which they're dehumanised.

If you want to, go ahead and use r*t*rd and similar terms as insults. I reserve the right to think of you who do as arrogant, rude, insensitive twerps. To the rest of you who might decide that on reflection, it might be decent to chose other words that don't have such power to hurt and harm, please pledge your support to eliminate the demeaning use of the r-word.

Orlando Holiday: Part 1 The Flight

We rose early on Tuesday morning and piled cases, wheelchairs and bodies into the car bound for Dublin airport. Once parked and in the airport, we'd only a short wait to drop of our bags then through security. So far, so fantastic. Duncan used his wheelchair (occasionally recreationally- see video!) though he did jump out every so often before sprinting after whatever took his fancy. No doubt folk observing were wondering what we were about, but sure, we're used to that!



We were delighted to spot my sister at the departure gate. Now we had the full crew the holiday really was on course. When the plane was ready we were allowed to board early. Duncan sat at the window, me to his right, his dad and Thomas in front (in case he kicked the seat!) and Lady and my sister across the aisle from me. It was just right. Best of all each passenger had a personal entertainment system in the seat back. Duncan started to watch Disney films straight off, with his ear defenders over the ear phones.

The Aer Lingus crew were fantastic. After take off we were told that the empty bulkhead seats were ours for the taking if we wanted them. We decided to stay put, even though they had more leg room, since it wasn't worth disrupting what was working so far.

Before long Duncan opted to simply listen to children's TV theme tunes and soon after that he set his screen to show the route map which he followed for hours! The journey took over 9 hours and in all that time he was just as perfect as I could possibly have hoped for. As always, Thomas and Lady were helpful and relaxed, and enjoyed the films and games on offer.

Just one incident marred the experience. Sitting behind me were 2 elderly men whom I presume from their accents were from the USA. They both slept for a few hours. Unfortunately I was assaulted at regular intervals by the most foul stench of someone's intestinal gases escaping and the pungency and direction of the attack strongly suggested one or both of these dudes was the culprit. But hey, when you're on an aeroplane you have to put up with whatever you're next to so I set the air blower things in my row to maximum and tried to breathe through my mouth. Then a couple of hours before landing Duncan started to move the window shutter next to him. He put it up, then a minute later shut it, and for a while he played at opening and closing it. He wasn't making much noise and the shutter wasn't shared with another row. He wasn't causing any harm and I was keeping a close eye to see if I needed to move him on to something else. Then I heard the men behind us talking and they were complaining to each other about the shutter thing, saying they wished he'd make up his mind and leave it alone. I was a bit surprised and caught my sister's eye. She sighed and rolled her eyes at the cranky old guys. Then I heard something I couldn't ignore. The one behind Duncan said (and I didn't catch it all exactly) "...I'd choke him..." and I knew he was referring to Duncan. I said to my sister who looked outraged, "did I just hear that right?!" She said that yes, she'd heard him too. I turned around and looked him in the eye, "excuse me, what was that you just said about my son?" He wasn't so forthright when he was challenged; "oh, nothing...I was just talking about the light. It's OK."
"You were talking about my son. He is disabled, he is autistic and he is doing the best he can. In fact, he is being bloody fantastic."
"Yes, yes. It's OK."

I wanted to say something to the crew but since I wasn't sure what else he's said, besides I'd choke him which I'd heard loud and clear, I left it. But I was a bit shaken. It was extra nice when a few minutes later another old Irish man who was queuing next to our seat for the sandwich sale, started chatting and asked about Duncan saying what a great boy he was. Better yet, 2 of the crew approached me to chat and commended Duncan in the most complimentary way saying he had been just wonderful and he was such a credit to us and what a lovely, happy child he is and it was a pleasure having us on board. Mr Nasty can't help but have heard.
My sister told me later that she'd heard the whole thing clearly. He'd said, "if he was my son I'd have choked him by now." Cruel sod. I pity the children he may have had and hope karma bites him hard on the ass.

But onwards. The descent was hard on Duncan. His ears hurt and despite our best efforts (together with kind offers of sweets and olbas oil drops from the crew and other, nicer passengers sitting close) he couldn't or wouldn't take anything. I just held him and whispered comforting words and he cried until he were almost down. But this too passed. We disembarked and were able to go follow airport staff through the disabled passengers' line at immigration. We even had a friendly immigration officer! We were all tired out but managed to keep it together until we'd got our cases (both times) and picked up the hire car.

We'd more than survived the journey, we'd enjoyed it.

We're NOT supporting Andrew Wakefield Facebook Group

I started a group on Facebook for everyone who wishes to record their opinion on the Andrew Wakefield GMC rulings. Anyone who is/is closely connected to an autistic person is especially
welcome. Join here:

Parents and autistic people supporting GMC rulings against Andrew Wakefield

I want to show that we do not all support Andrew Wakefield who despite the damning verdict against him, is unrepentant and said in his recent statement "It remains for me to thank the parents whose commitment and loyalty has been extraordinary."

The newspapers writing about the guilty man also refer to his support base and in some ways imply that parents of autistic children are more inclined to stand behind the disgraced doctor.
Please join the group and spread the word to show how we really feel about a man who has been found guilty of a disgraceful lack of ethics, a "callous disregard for the suffering of children" and who has done so much to denigrate autistic people and increase the spread of preventable infectious disease.

Dear passengers on EI121

So you've all booked a flight from Dublin to Orlando and luckily, you've chosen to go at the same time as me and my family. Some of you will, like us, be heading off for a bit of a holiday and hoping for sun, heat, roller coasters and perhaps some time at the home of the world's most famous rodent. It's likely that some of you will be travelling for work and others may be visiting family or returning home. Whatever the reason, I hope it's all good for you.

I'm sure you understand that this route attracts many families with young children who are incredibly excited to be going on holiday to Disney World, and for whom the long flight can be quite a trial. I suggest that if you don't wish to be disturbed by their chatter and the hopefully infrequent but inevitable tears and tantrums, that you pack ear plugs or invest in some noise cancelling headphones or even upgrade to business class. I hope your flight will be as pleasant as possible but young children and older people with disabilities exist and must be at least tolerated and hopefully even respected.

It's likely that I will board before you. Most airlines allow these small accommodations to reduce the stress on people like my son, caused by lots of waiting about. So when you're walking down the aisle and see the skinny boy who might just be kicking up a fuss about something, you can feel relief that you're not sitting next to him if you want but please, don't stop to tell me so like one heartless git did last time we flew. If you do find yourself sitting in our vicinity, well sorry. I promise you that all of the people in my party will be doing our very best to distract, entertain and if needed, reassure my disabled son. Know too that the child himself will be doing his best to cope with what to him can be a difficult situation.

You may think that people like him shouldn't fly if it's so difficult for him. I disagree. Flying is not an activity reserved only for adults and non-disabled people. We're all at liberty to travel so long as we abide by the legal requirements. It's important that we try to be as respectful and polite as possible to those around us but if my son shouts at times, that doesn't mean he can't fly.

Last year there were a few stories about parents and autistic children being removed from planes before take off. I read and was disgusted by some of the vitriolic commentary about these incidents. There were those who advocated bashing the kids against seat backs and throwing them out in mid-air. Apart from these extremists, there were many who just whinged about how their right to peace and quiet was disturbed by children and "mothers" (rarely fathers) who expected to be treated as saintly just because they'd given birth. I don't think that's the case. I'm sorry to say that when you're in a public space you have no right to peace and quiet, especially not when you're trapped in a moving can in the air. You have a right to travel in security and safety and as much comfort as is possible. But people of all kinds exist and they have to get about too.

So instead of judging, rolling your eyes and tutting (like one couple did last time) or staring (again, we had this last time) or getting pissed off at me for putting my son's seat back when he finally fell asleep (as the man behind him did last time- he actually pushed the seat back up! I let him, I was too worn out by then to protest) I have a radical idea- why don't you try a smile, and ask, "is there anything I can do to help?"
That would be truly heroic.

Know also it could be worse. I flew to Portugal with my sister last August. There were a few children in front of us, one of whom cried a little as we landed. That was fine: children sometimes cry and the parents were doing their best to comfort the little one. Behind us though were a group of people travelling together who yapped loudly the whole time, their braying voices forcing all around them to hear all about their exploits, and it was Too Much Information! Worse yet, someone kept farting and I was tempted to pull out the oxygen mask to have some clean air to breath. I was so relived to step off that plane.

Enjoy your flight!

Sharon xx

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.

Action for Children ad demonising autistic children cleared by ASA

In January, a major UK children's charity, Action for Children, released a television advertisement ostensibly about the help they had offered an autistic boy. It gave however, a shockingly inaccurate, damaging and offensive portrayal of autism and I and several others (listed here) wrote about the ad and contacted the charity with our concerns. Action for Children responded with a form letter apologising for upsetting us, as if that made it all OK, but ignoring all our valid explanations of why the ad was wrong. I created a Facebook group as a way of mobilising support and attention on the issue quickly and in a few weeks, over 2600 people had joined. The ad was supposed to have run for 3 weeks but was pulled after only 2.

In January, I complained to the Advertising Standards Agency (ASA) about the ad and on June 3rd finally received a letter with their adjudication. Unfortunately, they decided that the ad did not breach their codes. I was instructed not to publicise this decision until today when the ruling was made available on their web site.

I appreciate the time and effort the ASA has spent on this but I am very disappointed with their decision and also with the text of the ruling.

Action for Children responded to the ASA by saying that they "believed they had a responsibility to tell their stories through their [young people's] own eyes, not through the eyes of parents, carers or adults" and that "their organisation was committed to raising the issue that support was available through their advertising and campaigning, despite that being uncomfortable for some."

For the first time ever, I read that, " "Dan" (not his real name) was now an adult who was therefore able to give informed consent."
(my emphasis.)

The advertising company also responded:

"Clearcast said that, at pre-production stage, they had been informed that the stories told in the ads would be real case studies using children's own words. They considered the ads were extremely sensitively made and that the animation of the "monster" symbolised, in a child-like drawing, how a child felt when he felt out of control. They believed "Dan's" story was an uplifting one about how a boy who felt unable to deal with his autism could find help and support from Action for Children."

(my emphasis)

Does an advertising company just stating their opinion that the monstrous ad was "extremely sensitively made" make it so? Also, I dispute all these claims that the ad represents how a child/boy feels about his autism, since we now know that "Dan" is an adult.

I wrote to the ASA in January and posted my letter on this blog today. The ASA have summarised my extensive, reasonable and evidence based objections and those of the others thus:

1. All the viewers and Autreach challenged whether the ad was offensive and distressing, particularly to autistic children and their families, because of its negative depiction of an autistic child as a monster.
2. 31 viewers challenged whether the ad was offensive and misleading because it portrayed autism as a behavioural problem that needed to be corrected or because it implied that an autistic person chose to behave in the way they did and could modify their behaviour if they wished.
3. 11 viewers challenged whether the ad was misleading because it suggested autism could be cured.
4. Six viewers and Autreach challenged whether the ad condoned bullying because "Dan" appeared to believe it was his own fault that he was bullied.

Objection 1
Action for Children responded by talking again about the individual depicted in the ad, "his feelings of anger and frustration" and how "he overcame those feelings and was "more at peace" with himself. "

They claim also to have "received supportive comments on the ad from senior government figures and members of the public."

Well how nice, but thousands of people showed their disgust with the ad by electing to join a protest group, many others signed a petition against the ad, and 61 people and one autistic organisation were sufficiently bothered to complain to the ASA. Action for Children's income from grants and fees is "mostly derived from local authorities, health trusts and central government sources" according to their annual report and financial statements 2006/07 (see page 44 of the PDF link.) It is not too surprising therefore that senior government figures speak in the charity's favour. What is surprising is the insight gained into the views of the Rt Hon Hilary Armstrong MP, latterly the Minister for the Cabinet Office and for Social Exclusion on disabled self advocates.

"She said she disagreed that the ad portrayed autism as dark or evil; that it was the effects of autism that had left "Dan" feeling angry and isolated but that, with the right kind of support, it was not nearly as bad for him; that "Dan" was not "cured" of autism but had learnt how to deal with it with sensitive help and support. She said she was aware of a section of the disability lobby that believed the behaviour of those with a disability should not be "interfered" with but she believed that view should be challenged. Even if wider society tolerated the behaviour "Dan" described, it was painful for him."

(my emphasis)
That line about the disability lobby deserves further investigation. I wonder from where Ms Armstrong derived this peculiar view, what evidence she has that it exists and what relevance this notion of hers has on the criticisms of the monster autism ad? I am disappointed that the ASA saw fit to use this in their adjudication as it implies that those of us who object to the demonisation of disability are some peculiar "lobby" that seek to leave disabled people to flounder.

Objection 2
Action for Children responded by saying

""Dan" had approved the concept and the drawings as how he had seen himself and what he had felt he needed help with. They said he felt strongly that he now had support to help him with aspects of his behaviour which previously he had not understood and which had created difficulties for him in his relationships."

In the email I received from Gary Day on Jan25 this year, he wrote something else entirely. He said then,

"Dan tells his own story in his own words, and he chose to name his condition, the drawings that you see were also drawn by Dan, the pictures depict how he saw himself before we as a charity got involved and helped Dan and his family."

Why were they claiming at first that Dan drew the pictures when it was an advertising company all along. Why are they hiding behind this individual, as if Dan saying it makes it all right no matter how damaging it might be to all the other autistic people out there?

They also quoted the principal of Dan's school saying that Dan used to have behavioural difficulties but with their support, he got over them. That's all great but I don't see the relevance to an ad that is damaging to public portrayals of autism for all the other autistic children in the UK.

We learn also and I am not surprised, that the former chief executive of another major UK charity, Mencap, "supported the ad "because it raises awareness of some very complex issues that are frequently misunderstood by the general public" and who said awareness of the lack of services available needed to be raised."

It's all about the awareness isn't it? It matters not, apparently, if that awareness causes more harm than help. An ad that makes more people "aware" of autism as a condition that makes you into an anti-social monster is supposed to be a good thing?

Objection 3
Another glut of false arguments are presented in the next bit of Action for Children's response to objection that the ad appeared to show Dan being cured (my points in red):

" They said the ad showed "Dan" shedding his anger and frustration but referred to their comment above that he was still on the autistic spectrum at the end of the ad. This is not apparent to the average viewer. They said there was a wide range of opinion on almost all aspects of autism and that some groups disagreed with showing autism as any kind of problem for those diagnosed on the autistic spectrum, or their families. A total fabrication! Action for Children said they knew, however, that people and families who experienced autism also experienced problems and that they did not feel they could shy away from difficult or sensitive issues for fear of upsetting a small minority of people if they were making a case for the good of the children and young people with whom they worked. It is not fear of upsetting a minority that we have criticised, it is your misrepresentation of and damage to the lives of autistic people.

Objection 4
Their response to the bullying queries:

Action for Children said the ad quoted "Dan" as saying "I used to lash out if somebody pushed my buttons or I wasn't able to do something." They said that contextualised his feelings of anger and frustration in that they were not just in response to other people - he was also generally frustrated with things around him. No one objects to Dan's feelings nor that he was helped to find ways to deal with them. They said the crucial aspect of Action for Children's support was that it allowed "Dan" to be "more at peace with himself" and less likely to respond with violence to things that perhaps did not warrant that response. Action for Children said they did not condone bullying or cruelty but that, nevertheless, children and young people found bullying was a common and profoundly damaging experience. I contend that the ad itself would cause more bullying of autistic young people as it portrays them so badly.

It is worth noting that the opinions of the autism professionals who spoke out about the ad or against damaging portrayals of autism, are missing from the ASA's adjudication report.

The ASA's Assessment
Objection 1. Not upheld

The ASA say:

We considered, however, that they had taken pains to represent autism and the issues it raised in a way which, in their experience, was accurate and truthful, and that the message of the ad was positive. We concluded that the ad was unlikely to result in widespread offence or to have the effect of undermining the dignity of autistic children and their families through its depiction of autism.

I feel that I demonstrated in my letter the ways in which the ad was inaccurate, untruthful and that it's message was damaging. The ad did result in widespread offense and did undermine the dignity of autistic people. That the ASA don't agree is disappointing, but it doesn't change the facts.


Objection 2. Not upheld

We noted the concerns expressed by the viewers and the points made in defence of the ad by Action for Children and Clearcast. We considered that, while views on how best to address the issues autism raised might differ, the story told in the ad centred on one person's - "Dan's" - experience; on the difficulties he considered he had experienced as a result of his behaviour and his reactions to his surroundings; his wish to address them and the difficulties he had experienced in doing so until he received help and support. We did not consider the ad suggested an autistic person chose to behave in the way they did or that they could simply choose to modify their behaviour if they wished. We considered the ad did, however, tell the story of how "Dan" had wanted to deal with his situation and how, with the right help and support, he was able to do so. We concluded that the ad was unlikely to cause offence or to mislead viewers by portraying autism as a behavioural problem or because it implied that an autistic person chose to behave in the way they did and could modify their behaviour if they wished.

I disagree with this assessment. As I showed in my letter to them, the NAS have shown that 17% of people already think that autism is just bad behaviour. I expect that number would increase if those being surveyed were shown this ad first.

Objection 3. Not upheld

We considered that the story told in the ad centred on one person - "Dan's" - experience; on the difficulties he considered he had experienced as a result of his behaviour and his reactions to his surroundings; his wish to address them and the difficulties he had experienced in doing so until he received help and support. We considered that, just because issues or a situation could be addressed and supported, it did not necessarily follow that they were completely resolved or, in this case, "cured." We considered that views on how best to address the issues autism raised might differ and that, while the ad told of the experiences of how one person had been helped to address the issues they considered the condition raised for them, it did not suggest that the condition was one that could be cured or that "Dan" had been cured. We concluded that the ad was unlikely to mislead viewers by suggesting the condition could be cured.

Making this all about a man called "Dan" and claiming that as it's just one man's opinion, and then presenting this as if it were actually the views of a child, does not exonerate the charity and the professional advertising company from culpability. This ad was expensive to produce and run and portrayed autism in the way Action for Children thought would best gain them publicity and support as the saviours of even tragic cases like Dan's.


Objection 4. Not upheld

We noted the concerns expressed by the viewers and the points made in defence of the ad by Action for Children and Clearcast. We noted that the ad referred to "Dan" being insulted and reacting to that by being physically violent to the person concerned. We considered that, while "Dan" regretted reacting with physical violence and wanted to be able to deal with the situation more appropriately, the ad did not suggest that "Dan" considered it was his own fault he was bullied or that bullying behaviour was acceptable. We concluded that the ad was unlikely to be understood as condoning bullying.

I consider that the ad implies that autistic children are more likely to act aggressively than typically developing children. This is another misrepresentation as aggressive behaviour is not one of the diagnostic criteria for autism or Asperger's syndrome.

Professor Tony Attwood, criticised this ad with specific reference to the bully message:

"“I am very concerned that the advert gives a message that children with autism and Asperger’s syndrome are dangerous and potentially disturbed.

When the child refers to “correct errors in my behaviour” this seems to imply ‘brain washing’ and a sense of guilt for how he behaved.
Many of the behaviours I consider as coping mechanisms for the lack of understanding and respect from other people.
He refers to reacting when people insult him. Those that insulted him need the treatment.”

Professor Attwood was not quoted on the report.

So Action for Children can celebrate that they have won. I had hoped that the advertising guidelines might provide some protection for autistic people from the disturbing way Action for Children chose to portray them. But that has not happened. Action for Children must be proud of their victory, their right to show autistic children as monsters thrashing around terrifying the population has been upheld. Well done to them.