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.