3 Mar 2015

Never Say Never

In Saturday's Guardian was an short piece called "What I'm really thinking: the grandmother of an autistic child" in which a woman describes an outing with her 7 year old grandson Jimmy. Obviously we need to have some insight into the difficulties this causes her because that's the standard narrative for any and all articles on autism which centre on a family member and not autistic people themselves. So Grandma describes how "the red-faced Jimmy who is almost out of control" is "screaming and lunging violently at the locked doors" of some public toilets.

Later when Jimmy has settled Grandma discloses that she "like[s] to imagine" that they look normal and admits that few of her friends know that she has an autistic grandson in case they offer what she describes as "well-meaning but inappropriate advice" such as a book recommendation by an autistic author. "It breaks my heart because I know that Jimmy, even with the best help in the world, will never be able to read or write or lead a “normal” life."

I have not bothered to comment on a Guardian article for a few years but I wanted to reach out to this woman. I swallowed my distaste for the assumptions and probably unexamined attitudes regarding disabled lives and the potential to learn and develop. So doing my best to be considerate and temperate, I left a comment:
"If your friend's advice is to read books by autistic authors, then it is both well meaning and appropriate. Also, you cannot possibly know that Jimmy, aged only 7, will never be able to read or what kind of life he will lead. Your love and the time you spend with him coupled with good education and natural progression will help him live up to his potential. Take heart!" 
The most helpful thing to me in knowing how best to help my son has been listening to people who know what it's like to be autistic. Dismissing advice to read autistic writers is to my mind, ill-considered. Also it bothers me to read comments of the "my child will never" variety and we've all seen them numerous times in autism discussions. Sparrow Rose Jones wrote about the damage such statements can do:
"So . . . what is it that you are actually saying when you look at my life and say that I am not like your child? In a very real sense, you are saying that you don't believe in your child. You are saying that your child cannot grow to be what I am, do what I have done. You are signing off on a package that has not been delivered yet. You are dismissing your child's potential for amazing growth and change."
My autistic son will be 15 this year. I can't possibly list all the skills and knowledge he has amassed since he was 7 and like all of us, he will continue to learn and progress throughout his life.

(A couple of detractors took issue with my comment, but they showed so little insight and understanding that their views are beneath my regard.)

1 Mar 2015

Assembly Manual for Autism Articles

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



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

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


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

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

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

The NHS would fail him:
" Left in the hands of the NHS, she points out, Konstantin would so far have had little more than speech and music therapy, ‘neither of which would be giving him the skills that he needs to survive and have a life of dignity. Children on the autistic spectrum need to be taught how to fit into society, and the real cruelty comes from neglecting to do that.’"
My autistic son has never had any form of ABA(TM) and yet he is living a life of dignity. Nor is it cruel to ask that society accepts neurological diversity. 
And here comes the devastation: 
"a developmental paediatrician confirmed what she had not wanted to admit, even silently to herself – her son was indeed on the autistic spectrum. ‘I felt as though my heart was being ripped out,’ Tanja recalls. ‘My mother was with me, thank goodness, and as we left the hospital, I was physically sick. I am a fighter by nature but in those darkest hours I definitely became unhinged.'"
Step 8: Just so we know how hard their lives are, how terrible this Autism thing is, several examples of the child's terrible behaviour are described, the tantrums and self-harm, the strange humming and abnormal interest in trains. This makes the book "gritty" and "unflinching" in the newspaper book reviews and is generally thought of as a good thing.

This child is so very young that Step 9 detailing tales of violence is missing but his strange otherworldly behaviours are outlined:
"his speech regressed and he no longer responded readily to his name", and "in the weeks leading up to [the child's] diagnosis he had begun to walk on tiptoe and repeatedly pull his hair. He also opened and closed doors incessantly and became obsessed by pushing buttons on electronic toys."

Someone cure that child stat!

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

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

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

"However as she began to seek help, Tanja also realised that she was facing an uphill struggle. In the US, ABA is tried and tested – successive studies have shown that half of children given full-time ABA tuition early enough start school  and many need no further therapy at all. The other half make significant progress, too, reducing their need for special needs support. ABA is endorsed by the American Medical Association and in the majority of US states health insurance companies are mandated to cover ABA therapy. But in the UK, the National Institute for Health and Care Excellence has yet to provide ABA as an option for the treatment of autism. Its official line is that it cannot recommend ABA because a review has found no evidence to support it."
It is true that NICE, after a thorough investigation of the claims and the actual evidence decided not to recommend ABA. But another claim in this paragraph needs to be countered: there is NO evidence whatsoever that 50% of children who receive early and intense ABA ever become "indistinguishable from their peers" (whatever that means). That is an utter fabrication based on a poorly written study from way back in *1987* which combined 40 hours of intense therapy with harsh punishments. Do ethics matter? As I have written before, why are standards so very low when it comes to autism?

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


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

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

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

But lets see how if the template still holds:


"'...the transformation has been astounding.’ Before starting ABA, Konstantin had become so unsettled, he was incapable of sitting still to eat, read or watch TV. ‘If you took a toy away from him, he’d scream for an hour, and when he woke at night, he howled the house down,’ says Tanja. ‘Within a week of starting therapy, he was making eye contact and engaging again, and within a couple of weeks he was toilet trained, which I had begun to think would never happen.’ Eighteen months on, he is content and compliant and plays happily with his sister"
The child is only three years old! How much of this can be attributed to ABA and how much to natural progression? My son is 14 and can do all sorts of things he couldn't manage when he was 2! Also, I strongly oppose any treatment that has "compliance" as a goal. Too many disabled people have suffered as a consequence of early compliance training.

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

Step 14: pay now or pay later!

This step is exemplified in the following horrible paragraph:
"ABA is undeniably expensive. A full programme, whether carried out at home or in one of the handful of ABA schools in the UK, requires intensive teaching for up to 40 hours a week, 49 weeks of the year, and costs £45,000 annually, ‘which sounds a lot, but it is less than the £150,000 to £200,000 a year costs of residential care for young autistic adults once they become too big and aggressive to live at home,’ Tanja points out. (A recent study by the London School of Economics and Political Science estimated that autism costs Britain £32 billion a year, more than heart disease, strokes and cancer combined – making it the nation’s costliest medical condition.)"
"Too big and aggressive to live at home"! What a revolting statement. This sort of argument is particularly galling. There will be a high cost to provide appropriate lifetime support structures for some autistic people, and so what? Early ABA for all will not change that. People are entitled to the help they need as citizens whether they have a disability or not. The UN Convention on the Rights of Persons with Disabilities points of the problems of  "putting a price tag on the basic human rights for a significant segment of the population".
Furthermore, "it is actually good economics to ensure that disabled persons are able to live up to their potential. When there are no obstacles in their way, disabled persons are employees, entrepreneurs, consumers and taxpayers, along with everybody else."

The article ends:
"For Tanja, life may no longer be whimsical and carefree, but it has resounding purpose. ‘I believe there is a reason why Konstantin was given to me,’ she says. ‘He is the most sweet-natured and loving boy and he is living proof of what can be achieved. If he can deal with the challenges of autism, then so can I. So every day, we carry on and we count our blessings.’"
Life has purpose for all of us. Being mother of a disabled kid makes you no more special or worthy than anyone else. I count my blessings everyday too. I just wish that the sort of autism-mum story exemplified by this article would no longer be given a platform. It's beyond time to amplify the voices of the real autism experts, the people who are themselves autistic. 

17 Nov 2014

"Autism-Sucks" Parents Dominating Jerry Seinfeld Autism Analysis

Before reading this post read  Paula C. Durbin-Westby's recent blog post on media framing of autism stories and the real harm this is causing to autistic people. 

Jerry Seinfeld by David Shankbone via Wikipedia 


And once again, the parent of an autistic person is given space in a newspaper or magazine to spout off about how awful their lives are, what "real" autism is like and crucially, how dare Jerry Seinfeld claim he has anything in common with their lost and damaged offspring.

First out of the blocks on November 10 it was teacher of creative writing, Marie Myung-Ok Lee in Salon telling us all that "Jerry Seinfeld’s not helping: Celebrity autism claims distract from reality and research." Two days later we had Peter Holley writing for The Washington Post: "For some parents of autistic children, Jerry Seinfeld’s self-diagnosis was ‘a slap in the face." Holley hilariously depicts the awful, anti-vaccine organisation Age of Autism as an autism news site! He quotes infamous extremist Kim Stagliano and Theresa Cianciolo, another mum of an autistic child who are both vexed with Seinfeld.

You may think that two articles on this matter would be enough. You'd be wrong. This morning I encountered a third which follows exactly the same formula. This time it's Roger Alpher in Haaretz: "My son has autism, Jerry Seinfeld does not." All these articles follow aspects of the Autism ArticleTM template.


In all three articles Seinfeld is accused of diminishing their version of the reality of autism:

From Salon:


"To veer to the other end of the spectrum, the sporadic — but steady — news of overwhelmed parents killing their own children warns of a crisis building in our own homes. Many of these cases have been mothers, but before we explain it away, as it has been, with gendered suggestions of mental illness, attention seeking, etc., let’s also remember this story about a father — and high-ranking former Bush official — who shot his autistic 12-year-old son in a murder-suicide inside their suburban McLean home."

"Our own family’s out-of-pocket expenses of raising a child with autism average $20,000 to $30,000 a year — as it has, very consistently in the last 10 years — including schooling, legal fees, therapies, childcare, which puts us exactly in the CDC’s estimate of $21,000. If the high rate of autism isn’t disturbing to you, consider that the cost to care for and house a severely autistic adult for life easily exceeds a million dollars, not to mention forgoing the tax revenue, etc., if the person could participate fully in society. Taken in aggregate, the CDC tells us, “the societal costs of caring for children with ASD were over $9 billion in 2011. And I haven’t even begun to address the emotional costs, of having a child who can’t speak, connect, one that might be a danger to himself and others."

"these public faces of autism will allow society, and more important, policymakers, mentally off the hook. You can have autism and get a Ph.D.! It helps you write jokes! Your charming quirks and aggravating behaviors are now explainable.
and:
"It’s only a matter of time before another child is killed, and we won’t even remember their names. We need to call autism what it is: a public health emergency, no less deadly and devastating than Ebola."
Phew! So to summarise, real autism makes parents kills their children, it's an emotional and financial burden, and it's worse than Ebola. Now that's a hell of an attitude. Ebola has killed over 5000 people in West Africa so far and the WHO estimates that over 20000 cases are likely by the end of this month. But hey, that's away over there in Africa so it hardly matters. Also murder apologism is not something that Salon should give space to.

And on to the Washington Post and their view of real autism, as opposed to the quirky fun and fashionable autism Seinfeld has diagnosed himself with:

“My kids’ lives are irrevocably altered by autism and not in a good way,” 

“Autism is a neurological condition that requires a clinical diagnosis based on serious behaviors and issues and challenges. It’s a medical diagnosis, not a personality or a gift.”

“Jerry, if you think you have autism, come over to my house for a night, and we’ll show you what it’s all about.”

“When your child gets an autism diagnosis, it’s devastating. Your life is now over. Your life is your child’s life, and you are forever bound by that diagnosis.”

“It is generally a slap in the face to thousands of parents who have to deal with a child who is non-verbal or severely impacted by autism to compare those children to Bill Gates or any other famous individuals, even of those individuals display some of the minor characteristics of a major condition,”

While Holley ought to have sought out an alternative parental view to those of Stagliano and her ilk, he did interview 2 autistic adults who provided a bit of balance to the piece though the views of the "autism sucks" subsection of parents were given prominence.
One thing that is especially troubling is the assertion that the diagnosis means your life and that of your child is over- that's an appalling claim especially after the recent high number of murders by parents of autistic children. And that's something that ought to have been challenged by the journalist.


Finally, let's look at what they say in Haaretz:

"When Seinfeld is interviewed, he maintains eye contact, distinguishes the important from the trivial, ignores distractions, and speaks to the point. He doesn't lick his hand or interrupt the interviewer with a question that reflects a level of understanding like that of a 5-year-old.What can one say? On the spectrum, a great life."

"But Seinfeld’s nonchalant self-diagnosis is a joke of sorts at the expense of my son, Yotam. While Seinfeld preened with a little autism on television, I sat with Yotam in our living room, together with a social worker. Yotam is 19, but incapable of being responsible for himself. "

"For parents, the diagnosis of their child as autistic is a terrible blow. For him and them, lifelong. Parents of autistic children suffer from high levels of tension and anxiety. And that’s in the best cases, where the children are high-functioning."

My son is autistic. That a famous man has stated that he thinks he shares some characteristics with people diagnosed with autism affects us not a jot. Autism comes in different flavours in different people. While it is often difficult to adapt to the idea of parenting a disabled child, the diagnosis of autism does not have to be devastating or a terrible blow. It can be the first step to knowing how best to support your child. I also reject functioning terminology as it can ignore talents and skills as well as diminishing difficulties and needs. These parents do not speak for me or my son.


Dear mainstream media, we've heard enough now about how it's unfair for Seinfeld to be in anyway linked to autism. Can you now start to change the dialogue, open it up to more autistic people, let them tell you what they need to thrive and listen when they point out harmful practices and narratives. These 3 stories you've published help no one and add nothing. You have power and in my opinion, a responsibility to help people like my son. Stop diminishing him.



28 May 2014

What kind of people commit violent crimes?

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

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


2 May 2014

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:




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.

29 Apr 2014

Ryan Movie Maker

I asked Ryan if I could write a blog post about him and as long as he didn't have to write anything himself he was happy enough. So I'm going to try to tell you about my boy and think the best way is to share some of his creations.

He has always loved films and PC games and has been fascinated by all the different characters. He has learnt so much from wanting to find out more about his favourite characters from Disney films, Thomas the Tank Engine and even Kinder egg toys. He learned to type, read and write because he wanted to be able to Google their names, he learned colours and numbers from Thomas and his Friends. In the past few years he's become fascinated by cinema and is working on a few feature films of his own that he's convinced will be shown in our local cinemas at some stage. We go see a film together at least once a week (and thank the stars for the Cinema Exhibitors Card allowing his carer free entry) and he knows and is known by almost all the staff. In one cinema they even arranged for him to visit the projection room a couple of times. He takes photos of each screen after the movie ends and knows in which screen of which cinema on which date and with whom he saw every film he's ever seen.


Ticket for Ryan's forthcoming Minecraft movie

He's also kindly detailed running order of ads and trailers for the benefit of the cinemas and has a poster letting us know who else is involved in this work of creative genius:



Most recently he's been animating a Minecraft movie in association with Pixar. The boy thinks big! He's even adapted the Pixar logo to fit.

He has also invented a load of new characters and has been making films about their trials for a while too. My favourite thing about these folk is the "wiki" style character breakdowns he created (click each picture to read):

All about King Elton

All about Malcurtis Eves


All about Zunarmny- best bit of this is his dislikes ;-)

He definitely prefers the bad guys, I mean look at those lists of personality attributes! I've had to explain what they all mean lately so we've had lots of talks about character and how people think, feel and behave. It's all very high concept stuff but when he asks the questions, he's ready to learn.

He spends hours working on these and I am quite happy to let him indulge in his hobby. I love how he draws the characters and then creates their Minecraft version:
I enjoy the detail he inserts in his images, most of which seem to focus on sword fights and desperate battles! 

That's Robin Hood 3D (Ryan's alter ego) fighting the evil Zunarnmy- IN HELL!!!

I'm sharing just 2 of his more recent creations. First we'll see Merida battling the evil Lord Elton:

 


And let's end with the grisly demise of one of the bad guys: 





So that's a snippet of what Ryan has been at when he's working away on his laptop. I don't know what what he'd be at now if he wasn't autistic- but that would mean the Ryan I have and love wouldn't exist so I really would never want to find out. 

2 Apr 2014

Action not Awareness for Autism

It's World Autism Awareness Day and autism is all over the papers and radio. Some of the stories are great such as this by Fiona O'Leary, an Irish self-advocate explaining why she opposes the Light it Up Blue campaign and seeking an end to negative rhetoric:
"Any research that will bring positive benefits to people on the autistic spectrum is welcome. However, the propaganda used by Autism Speaks is instilling fear and hatred about a condition that is struggling to find acceptance in society."
Some stories attempt to tug at the heartstrings such as the story of a 9 year old girl who wrote in school about her dearest wish- that her 4 year old brother be cured of his autism. In her letter she describes her brother's sensory issues as well as the efforts those who care for him are making at improving his communication skills using Grace App. The little girl comes across as very insightful and caring. It seems to me that she uses the words "cured" and "healed" as shorthand for educated and parented so as to help him to have the best life possible. It's just a shame that the media have jumped on her story as though autistic kids' lives are a tragedy and the only way to help them is to seek a cure.

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

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

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

Ryan with his beloved Granda. 

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




28 Mar 2014

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.


24 Mar 2014

Autism Biomed Bullshit Booming in Ireland

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

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


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

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

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

This article follows the tried and tested Autism ArticleTM template as described below.

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




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

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

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

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

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

18 Nov 2013

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.

20 Aug 2013

This is My Child

This Is My Child is an awareness-raising campaign run by Mumsnet.

This is my millennium baby. He didn't develop along quite the same path as his older sister and most of his peers and was diagnosed with autism when he was two years old.

Ryan aged 2
As a toddler he didn't speak but he communicated in other ways. Over time and with lots of help and teaching optimised to his way of learning he learnt to communicate more effectively.

Ryan aged 4 in a play centre- he was speaking in 2 to 3 word sentences then.

Over the years, just about every single time we have been out and about together, people have taken a second look at him. Often it's because of what he's wearing. Ryan loves videos and stories. Most of his language comes from chopping up film scripts and slotting the pieces into place appropriately. He makes films of his own, He likes to dress up as his favourite characters. He's eccentric and catches eyes as he strides along with a red blanket wrapped around his shoulders.

Ryan aged 6, Robin Hood/Cowboy mash-up

Ryan aged 12 as Curtis the evil raccoon-sheep from Minecraft
People look because Ryan can be loud. He comes out with unexpected expressions. Sometimes he's angry and lashes out though it's very rarely physical and he holds back from hurting as best he can. Often he talks to himself and he moves in non-typical ways. He often livens up walking with a perfectly executed pirouette.


Most people look instinctively then go on about their day when they see that it's just a boy out living his life as he's entitled to. Rarely do people progress from simple curiosity to outright rudeness and the stares of strangers don't affect me. Over the years I've developed a force field that surrounds me and my boy and the people who try to catch my eye so they can register their disapproval are rarely successful. Some still try but I notice it much less than when he was younger. His disability is more apparent as he grows. He's not like typically developing teenagers.

Most people are lovely- they smile at Ryan, they show us kindness when we need it. Ryan abounds with kindness and concern for others. He deserves to have his place in the world, to be accepted and to have the few accommodations he requires to participate. He's my child and I wouldn't want him to be anything other than the creative, funny, loving and perfectly autistic boy he is.

27 Jun 2013

Double Helix Water Autism Quackery

There's a new quackery promoter in town and he sent me the following email a few days ago. My thoughts are in red:

"Dear Sharon, 
I have just been reading your blog I don't think so and wanted to introduce you to a new approach to working with Autism. Rather than send you a long email.
Don't leave me hanging, rather than send a long email you'll...?

I just wanted to say that I am new to the Autism community here in the UK allow me to represent the autism community in the UK and Ireland and say hello and welcome as I am working to try and connect with parents of Autistic children but not autistic adults? with a view to subsidising a trail oh here it comes of a water product that is having very positive outcomes with Autistic children. Wowee positive outcomes! That sounds like a good if rather vague achievement. And you're subsidising a trial? Does that mean people are actually being asked to pay to take part in a research project? Ethics fail.
I have attached a couple of pdf's for you to look at and look forward to hearing back from you when you have a moment.
 
Best Regards,
Jeremy Jones
Double Helix Water (UK) Limited
Company Number 8482978
Distributors of Double Helix Water for United Kingdom and Ireland"
(Double Helix Water-it's like DNA and water combined and doesn't that sound just awesome!)
Jeremy's email included a link to a science-y video all about the mysteries of water. Also attached was a slick marketing PDF which is what really piqued my ire. I can't find a link (will forward PDF to anyone interested) I uploaded it to Google Drive and here's the opening page:
 
Autism- ripping jeans and upsetting little kids since 1943
 
 
They're selling hope, the most marketable of all products. But they need first of all to frighten potential customers who, if they knew that autism is part of the naturally occurring diversity of human experience, wouldn't be hoodwinked by their pitch.
 
This document which I'm calling A New Hope goes on to proclaim that we're in the midst of a Global Epidemic, autism is a "medical and social issue that we can no longer afford to ignore. It has to be dealt with, and real solutions need to be
found." 
 
This is followed up with an unreferenced "study" concluding that biomedical treatments are 81% safer and 60% more effective at "producing improvement" than drug treatments for autism, all based on parent consultations and the Autism Research Institute. 
 
So much fail. To start:
  1. who was "improved" and how?
  2. drugs don't count as "biomedical treatments"?!
  3. how was relative safety defined and measured
  4. parental opinion is hardly objective.
  5. the Autism Research Institute is a key player in the axis of autism-vaccine nonsense, it is a disreputable organisation promoting pseudo-scientific and potentially dangerous treatments for autism.
  6. what exactly are the drug treatments referred to?
On to page 11 and more misinformation:
"Genetics Does Not Explain Autism
A Stanford University study of twins published last year found that genetics accounts for just 38 percent of the risk."
That's not what the study found- its authors say that the role of environmental factors has been underestimated. However an alternative analysis of their data concludes that it supports the findings of all previous twin studies and provides further evidence of the heritability of autism.

There is certainly no evidence for A New Hope's next claim, "The Majority Of Autism Is Caused By Environmental Factors."
After the usual autism-snake-oil pitch about gastrointestinal disorders and chemicals and toxins (oh my!) we're shown the solution- our saviour is so highly qualified the page is crammed with accolades:

Our hero

And this genius discovered something remarkable- stable water clusters. I think he means ice crystals. But anyway these, A New Hope claims, "have a remarkable effect on the Human Immune system."

What is it with quacks and non-standard word capitalisation?

On page 21 we learn that they use "Completely Safe thermal imaging" not harmful x-rays to examine the patient. But why would anyone even suggest using x-rays to discover anything about autism?!

Pink bad green good

So the magic water is administered and as the "startling" thermal image above of an autistic 7 year old shows, after only 20 minutes the child's temperature has dropped. Perhaps the heating was broken.

A New Hope ends with a pair of testimonials about how the magic water made a little boy and autistic teens smarter and healthier.

OK I'm convinced- where can I sign up to get the boy known as Duncan a supply of water clusters to make him more green and less autistic? Thankfully there's a FAQ on the website telling all. There's also the small detail of cost, they ask "participants to contribute $800 for this research project for three months". And they have the cheek to ask people to fork out that kind of money for water with a disclaimer that comprehensively states that participants can and should expect nothing for their money: "Nothing in this material is presented here as an effort to offer or render medical advice or opinions or otherwise engage in any type of medical practice."

This is a ridiculous con but some parents of autistic children will fall for it. It disgusts me that the people behind these companies are so lacking in standards, morals and ethics that they prey on people at a vulnerable point in their lives.

Mike directed me to a site dedicated to water quackery which other than homoeopathy, was to me, an undiscovered ocean of woo. Dr Lo and his Double Helix water gets a special mention.

And Allan sent me a link to an inadvertently funny video about emotional water- with ice crystal formation supposedly dependant on exposure to words.

What would happen if the water was exposed to these words?



 

18 Jun 2013

Why She Stayed

I posted on Facebook about the photos of Nigella Lawson having her neck squeezed by Charles Saatchi and called him a typical abusive creep for making a statement minimising his behaviour by describing it as merely a "playful tiff". One of my friends said "I just cannot understand why such a smart, beautiful and independently successful woman would have stayed with him throughout torment like this!"

I thought about this and decided to respond here instead of on Facebook.
I don't know why she stayed, only she can answer. But I would be very surprised if at least some of the reasons I shall list don't apply. 

So here is why she and people like her may stay:
  • It started out so slowly and insidiously that she didn't realise it was abuse until she was married or much later.
  • She thinks that she doesn't deserve better.
  • She's afraid, confused, guilty and burdened by obligation.
  • He's hurting and needs her love. She can heal him, it's her duty to just keep giving.
  • She thinks she's to blame for most of what goes wrong- if she could stop being so emotional and weak things might improve.
  • She sees him behave properly in every other situation except with her- it's her fault.
  • She minimises incidents, explosions, hurts and humiliations as soon as things get on a more even keel. 
  • She feels embarrassed, thinks she overreacts, knows she's not perfect, thinks of herself as too argumentative and combatative. 
  • She finds it hard to keep track of what happens.
  • She still feels love for her partner- it may turn out that the emotion could more accurately described as pity.
  • She's frightened of change, of things getting even worse if she tries to end the relationship.
  • She can't imagine how things would be if the marriage ended.
  • She's afraid of being alone. 
  • She's concerned about the impact on her children.
  • She's afraid of what a man with wealth and power could do to her if she tries to leave him, how he could affect her reputation or career. Will he start telling people that she's mentally ill or unstable?
  • Sometimes it's fun being with him, she remembers good times they shared, sometimes he acts as though he might actually love her.
  • He might apologise, promise that he loves her, he'll change and do whatever it takes to make things ok, but that he can't do it without her. 
  • Stockholm syndrome is real- the person causing the hurt may then take care of her, increasing the confusion, making her dependent on him and feeling like she couldn't possibly cope without him.
  • His promises keep lighting the hope that things will improve. Hope takes a long time to die.
  • Ending a marriage goes against all her values and principles, she thinks that she must fight harder to make it work, give it one more go, try to accept things or be more understanding.
  • Ending a marriage means admitting defeat- she must accept that she failed to either pick the right partner or to make a marriage work. She might feel shame especially if she's the only person this has happened to in her family. She might feel shame that people will blame other difficulties in her life for making marriage impossible.
All kinds of women and men can be in abusive relationships. Thankfully sometimes she recognises what's been happening, fights the denial, crushes false hope and with a heck of a lot of help, she gets out of it and makes a far better life without the abusive jerk. But it never stops stinging slightly when people ask "why did she stay?"

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.