I Speak of Dreams

Condition Can #Suckit

3/4/2012 Updated, up front.

The woman who wrote the "Autism Can #Suckit" post has made a remarkable apology.  You should read it: The Evolution of an Apology

2/29/2012: Updated: see bottom of post

A woman in my blogging circle has lupus.  About a year ago, she started using the hashtag #suckit to publicize a fundraising effort for lupus research, even having a #suckit label on her wheelchair.

Lupus has now become our arch nemesis. And our family is dedicated to kicking it's ass. No one likes what it has put me through- 3 surgeries- 5 hospital stays- countless pills, weekly injections and even chemo. Yes, Lupus can suck it. 

 For the rest of Erin's SuckItLupus posts, go here.  The phrase, with the hashtag and suckit all one word, seemed to become popular about three years ago:

It's from IRC lingo for a chat channel - in this case, the author is asking you to take your concerns to the "#suckit" channel.

 Denise even published a #suckit list. Some people use it to talk to diseases in their lives:

• Type 1 Diabetes can suck it 
• Type 1 Diabetes hypoglycemic episodes can suck it
• 98% of the time, this family's life with multiply-disabled children is great, but the 2% can suck it.
• Cancer can suck it
• Suck it, cerebral palsy

You get the picture. Did these posts start the slightest bit of controversy?  No. The phrase has picked up in popularity recently, at least in some blogging circles.

Back in 2010, my blog-pal Ellen Seidman (who writes Love That Max) wrote a blog-post An ad campaign for kids with  special needs?  Bring it on! In that blog post, she wrote the words, 

I could see a whole "Suck it!" campaign:

Suck it, cerebral palsy!
Suck it, autism!
Suck it, Down Syndrome!
Suck it, PDD!
Suck it, Tourette's!

Did that cause controversy?  No.  Why?  Possibly because the language was in the context of an awareness/acceptance campaign.

Recently, an autistic child made a huge step forward, one his parents and teachers had been working toward for years.  His mother, overjoyed, announced to the world (via social media) her joy over her son's accomplishment, and her determination that he will continue to make similar accomplishments, with the following:

"DO YOU HEAR THAT AUTISM?

 I’m going to teach my son to read, so SUCK IT.”

And that's when the conversation took its first turn toward ugly.  An autistic adult questioned the mother about her use of "suck it" relative to autism, and then the mother had a choice: to hear what the autistic had to say about that kind of language, or to respond with hostility, inaccurate declarations, and distortions of what neurodiversity and autism acceptance really means.  The mother chose the latter course.

Many autistic adults are quite clear that while they value their own autism, they also have significant challenges .  One clear example was written nearly two years ago by Corina Lynne Becker, What I Want People to Know, which has the following passage:

I want to be very honest with you. I am an adult living on social assistance, in a shared accommodation run by a non-profit housing organization. Despite being highly educated, I find it difficult to find and maintain a job on my own, and I’m not even sure that I ever will. I struggle to survive with few to no supports, mostly my family and the little that some organizations have been able to provide. It is, at times, very and extremely hard. There is a lot to remember, and each minute, each second, costs me. It costs me strength and energy, to maintain social skills, to remember how to do things, process information and formulate answers. It takes a lot of work, as I’m sure most parents of autistic people can understand.

The parent's claim to love her child, and value autistics, while telling autism to "suck it" has the same tone, and the same inevitable failing,  as the "hate the sin but love the sinner" cliché.  

When a parent who has demonstrated a profound misunderstanding of neurodiversity writes, or says, that she wants to "get rid of autism" it's hard not to believe that the parent is thinking of getting rid of autistic people.  I know how I would feel if somebody said that of me.  

Being "intensely autistic" -- extreme difficulty with communication, difficulty with sensory and emotional regulation, and so on-- is hard on the autistic person.  Parenting a child with intense autism is hard.  But there are many parents of intensely autistic individuals whose goals are not to "get rid of autism" but to help their children be "at ease in their skin" and to make the most of their gifts.  Note: not get rid of their autism.  It's not a subtle difference.

Update:

Melody Latimer, an autistic adult who has autistic children, has written "Why My Child Isn't Like Yours Isn't the Point".

What I do know is that there is no amount of hate of Autism that will make your child better. There is no amount of vitriol put into treating your child that will not radiate to your child. There is nothing you can say that I have not been through myself, with one of my children, or have seen one of my friends go through.

Robert Rummel Hudson, writing at Support for Special Needs, has written No Offense, imagining a mythical conference where no one was allowed to express offense at another's words

Now, of course, that’s not strictly possible. Of course people would be offended; if the exchange of opinion were to flow freely, someone would be almost certain to find offense at something. But at this conference, no one would be allowed to stand up and say “That is offensive, the thing you just said!” No one would be able to clothe themselves extravagantly in their their hurt feelings. If you didn’t like what someone had to say, you would be free and in fact strongly encouraged to debate the merits of their position. But our conference’s one rule would mean that standing on the marble platform of deep and personal offense would not be allowed. The first person to express outrage and offense would be booed out of the hall, and their box lunch privileges would be revoked.

In a tweet, Carol Greenburg @aspieadvocate responded to Robert Rummel Hudson's dream (I've expanded the language beyond 140 characters).

There is no offense-free zone possible,  because conflict is inevitable. Resolving it with compassion is hard work. None of us are excused from this work.

How Anti-vaccination groups misuse information from VAERS, the Vaccine Adverse Event Reporting System

One of the gambits the National Vaccine (mis)Information Center uses is to exploit raw data from the Vaccine Adverse Events Reporting System (VAERS) to spread fear, uncertainty and doubt about vaccine safety.

The author of "The Poxes" blog,  Reuben,  has written a blog post, VAERS reports as "evidence" of vaccine harm

Another common anti-vaccine attempt at rationalizing the fear they want to instill in you is to point at the "Vaccine Adverse Events Reporting System", or VAERS. It is a system set up as a repository for reports from the public of "adverse" events following immunization. The vaccine injury act created it. Just about anyone can post an event to the system, and it is up to epidemiologists at the Centers for Disease Control and Prevention (CDC) to look into the reports and investigate them. In most cases, it is determined that the event had a cause other than the vaccine. But that doesn't stop the anti-vaccine groups from scaring you through quoting numbers they got from VAERS.

In the post he walks the reader through how to use the system and illustrates that death reports may not be from vaccines at all.

Steven Novella MD has also written a post at the JREF Swift Blog: VAERS Pseudoscience, illustrating how the NVIC's VAERS "analyst" misused the VAERS system:

What voluntary reporting systems are not, however, are scientifically rigorous assessments of true risk. They are useful for generating, but not testing, hypotheses.

The primary weakness of voluntary reporting systems, like VAERS, is that they are voluntary - people take it upon themselves to report what they believe may be a vaccine side effect. Such reporting is therefore subject to reporting bias. A news story warning about the risks of the flu vaccine will result in a spike in VAERS reports of flu vaccine side effects.

Any trend in VAERS reporting, therefore, has to be interpreted with caution, and in fact cannot be scientifically interpreted. A possible signal in VAERS would need to be followed up with some rigorous data - systematically looking at the incidence of the alleged side effect in a population and correlating it with vaccine status, for example.

A recent article in Mothering Magazine however, ignored all this and treated VAERS reporting as if it were scientific data. The author, Stephen Rubin PhD, analyzed recent VAERS data and interpreted the results entirely as if trends represented actual trends in side effects, rather than potentially artifactual trends in reporting. The result was an irresponsible piece of fear-mongering.

It gets worse. Mothering has a regular column from Rubin, in which he relays endless misinformation about vaccine safety.

Why What a Gormless Irish Self-Help Guru Wrote About Autism Matters

Update February 9 2012: More articles! And words from Humphreys!

 Update February 8 2012: More articles! Take action!

You can submit a letter to the editor by going to http://www.irishexaminer.com/opinion/letters/sendletter

You can complain to the Irish Press Council:

Press Council of Ireland

1,2 and 3 Westmoreland street, Dublin 2
Republic of Ireland.

info@presscouncil.ie

 It is 2012, and newspapers are still printing this malignant twaddle about autistics and their parents:

What is shocking is that [autism researchers] are one: assuming that autism is a scientific fact and, two: missing the glaringly obvious fact that if the adults they researched live predominently in their heads and possess few or no heart qualities, their children will need to find some way of defending themselves against the absence of expressed love and affection and emotional receptivity.

In other words, autism is a myth; whatever is wrong with "those children" is the fault of the parents; and those who work in science, technology, engineering and math are cold, unfeeling types.

Who said it?  A man named Tony Humphreys, who advertises himself as "the most influential psychologist in Ireland". Casting an eye over his publication list, I'd call him just a run-of-the-mill self-help guru, selling soothing twaddle (see Steve Salerno's brilliant SHAM for background) with an Irish inflection.  He's virtually unknown over here in the US -- books un-reviewed on Amazon; no newspaper coverage, and so on.  

as always, click to embiggen.

 

In Ireland, he appears to be well-known, or at least, adept at self-promotion--styling himself as "Dr." and as a "clinical psychologist", although his qualifications seem hard to come by.  At any rate, he's on the radio and has a gig writing a regular newspaper column for the Irish Examiner.

Update February 9: In an article at the Irish Examiner, Humphreys  "responded to comments on blogs and social media websites which questioned his professional background. He pointed out he had a BA (hons) and MA (hons) in applied psychology from UCC and a PhD in clinical psychology from the University of Birmingham."
 

On Friday, February 3 2012, The Irish Examiner ran the above-quoted article (the whole thing is reprinted at Irish Autism Action's Facebook page).

A furore ensued, but the Irish Examiner was unmoved:

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

Today, they published a few rebuttals from parents (see below) but allowed Humphreys to repeat more inaccurate and offensive remarks: 

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

Why should non-Irish autism advocates care?  Because counter-factual bollocks like Humphrey's spreads like slimemold.  Because a lie can go around the world before the truth can get its boots on.  Because such opinions lead to treatments that are harmful to autistics and their families.

Sharon F (an Irishwoman and autism parent) wrote at The Voyage:

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

Bock the Robber wrote a detailed critique of each point Humphreys raised at Tony Humphreys, Clinical Psychologist, blames the parents, and notes:

Humphreys presumes that autistic children have not received a daily diet of nurture, love, affection, patience, warmth, tenderness and kindness.  An insult to their parents.  Since he is not an expert in genetics, neurology or biology, he has no business making definitive statements about these things.  It reflects poorly on him.  No professional should make make such dogmatic statements about a field he is not qualified in

Mike Stanton pointed out that as bad as Timimi's Myth of Autism is, it didn't help that Humphreys completely misunderstood the book:,

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.

Scientist Kevin Mitchell, in a letter to The Irish Examiner

The article by Tony Humphreys claiming that autism is caused by "cold" or emotionally distant parents, displays such willful ignorance, lack of understanding and density of inaccurate and offensive statements that it is shocking that the Irish Examiner would publish it.

 

Update February 8 2012

 Brian Hughes at The Science Bit has written "How to Argue Illogically: Tony's Top Ten Tips"  

Arguing that if something is a psychological difference then it cannot also a biological difference is an example of an appeal to dualism. As a purported expert, for Humphreys to adopt such an argument betrays a command of his subject that is deficient on a truly breathtaking scale.

Update February 9 2012 Humphreys quoted Simon Baron Cohen in his essay.  This was his response:

 Steve Salerno on the kind of babble Tony Humphreys emits:

And yet even when people aren't dying, there is no missing the recklessness of this misbegotten realm. Self-help is not benign. The $11 billion industry can hurt you psychologically, it can hurt you financially and, as we see, it can hurt you physically. It can hurt your family and friends too.

and

The trouble is, in order for a self-help regimen to gain real-world traction, it must be oversimplified. It must be extreme -- polar. Either it offers full absolution from responsibility and blame (i.e. victimization) or it offers the promise of omnipotence (i.e. empowerment). Neither pole has much to do with real life, which, as noted, is heavily nuanced and laden with unknowns.

I think there's more to come on the story of Tony Humphreys and autism, and I'll be here to get the word out.

Listing Changed February 9 2012

Humphreys' Articles and Favorable Reaction

1. February 3 2012 Tony Humphreys on Autism in the Irish Examiner "Core Connection" (reproduced at Irish Autism Action Facebook Page) 
2. February 7 2012 Op-Ed at Irish Examiner The Right to an Opinion
3. February 7 2012 Tony Humphreys at Irish Examiner Research is Crucial to Care Debate
4. February 9 2012 Conall Ó Fátharta at The Irish Examiner Parents "Never to Blame"
5. February 11 2012 Transcript of Claire Byrne's interview with Tony Humpreys on the Marian Finucane show
6. February 11 2012 The Irish Journal Humphreys Stands by Comments
7. February 12 2012 The Irish Examiner Humpreys Shocked by Reaction to Article

Responses Critical of Humphreys:

1. February 3 2012 The Thinking Person's Guide to Autism Facebook Page
2. February 4 2012 Sharon F. at The Family Voyage Irish Examiner and Tony Humphreys -- A New/Old Theory of Autism
3. February 4 2012 Carol Oates Where I Admit I've Been Lying to Everyone
4. February 4 2012 Magnum Lady at Magnum Lady's Blog "Core Connections"
5. February 4 2012 Bock at Bock the Robber Autism Spectrum: Tony Humphreys, Clinical Psychologist, Blames the Parents
6. February 5 2012 Siobhan O’Neill, guest posting at Maman Poulan Responding to Tony Humphreys  
7. February 5 2012 Three Mile Limit Refrigerator Cousin: Tony Humphreys on Autism and Engineers
8. February 5 2012 Sharon F. at the Family Voyage Autism Ordure at The Irish Examiner: Why Worry
9. February 5 2012 Mike Stanton at Penumbrage The Myth of Autism pt. 3
10. February 6 2012 Sharon F. at the Family Voyage Tony Humphrey's Toxic Autism Article
11. February 6 2012 Lisa Maree Domican at Living with Autism A Posting from Autism Ireland Facebook page
12. February 6 2012 Wrong Planet Discussion Board Autism Doesn't Exist?
13. February 6 2012 Political Discussion Board Tony Humphreys and That Autism Article
14. February 7 2012 Irish Autism Action and Parents Respond (Facebook)
15. February 7 2012 Sharon F. at The Family Voyage Irish Examiner Responds to "Autism Controversy"
16. February 7 2012 Eoin Lettice at Communicate Science Autism Article Does No Public Service
17. February 7 2011 Irish Autism Action Facebook Page Parents Response
18. February 7 2012 Kevin Mitchell at Irish Examiner Psychobabble Discredited for Decades
19. February 7 2012 Kevin Whelan (CEO of Autism Ireland Action) We Don't Need to Defrost an Assumption Over 70 Years Old
20. February 7 2012 Frances O’Callaghan  at Irish Examiner Upset and Offended by Article
21. February 7 2012 Vanessa O’Loughlin at Irish Examiner Autism Spectrum Disorders Is Not Just About Emotional Withdrawal
22. February 7 2012 Niall Finn at Irish Examiner Article Horrendously Insulting and Hurtful
23. February 7 2012 Penny Rogers at Irish Examiner Article Outlines An Outdated Theory Without Empirical Basis
24. February 7 2012 Damian Morrissey at Irish Examiner Offended by Hate Speech
25. February 7 2012 Roller-Coaster ie (Discussion Board) Your Opinion on Tony Humphreys' Article
26. February 7 2012 Mark Connelly at Irish Autism Action Facebook Page What Are Tony Humphreys' Qualifications?
27. February 7 2012 Simon Harris TD at his Facebook page:  Unbalanced and Ill-Informed Comments on Autism Are Hurtful and Unhelpful
28. February 7 2012 Nick McGivney at Our Jacob A Lesson On Love in Down Syndrome, A Lesson on Emotional Distance in ASD
29. February 8 2012 Interview with Lisa Domitan on Irish Talk Radio
30. February 8 2012 Brian Hughes At The Science Bit "How to Argue Illogically: Tony's Top Ten Tips"  
31. February 8 2012 Heather Anders at Irish Examiner We are Engaged and Compassionate Parents
32. February 8 2012 Sharon F at The Family Voyage Tony Humphreys In Irish Examiner--Parents to Blame
33. February 8 2012 Brigid Sinnott at Irish Examiner Very Damaging Material
34. February 8 2012 Leigh McCann at Irish Examiner Don't Blame Parents for Autism
35. February 8 2012 Professor Louise Gallagher Apologize to Everyone Affected by Autism
36. February 8 2012 Jazzy Gal at Jazzy Gal Stepping Out Wordless Wednesday Refrigerator Mom...The Evidence
37. February 8 2012 MagnumLady at MagnumLady's Blog The Autism Controversy Continues
38. February 8 2012 Devina Devecha at Autism and Us Blog Autism Theories from The Dark Ages in  2012 
39. February 8 2012 Mum at Looking for Blue Sky Why The Tony Humphreys Article Upset Me So Much
40. Februrary 8 2012 Greg at The Skeprechauns Tony Humphreys and More
41. February 9 2012 Sara McSweeney at The Irish Examiner People with Autism Deserve Better
42. February 9 2012 Niall O’Brolchain at The Irish Examiner Article Could Be Used to Justify Cutbacks
43. February 9 2012 Mary Farrell at The Irish Examiner Humphreys' Views are Discredited
44. February 9 2012 Paul at Penhire Tony Humphreys Nonsense
45. February 9 2012 SharonF at The Family Voyage Excuses Not Apology from Irish Examiner and Tony Humphreys
46. February 9 2012 Fatmammycat at Fatmammycat's Blog Bombastic Tony Humphreys Says He Didn't Say Exactly What He Said 
47. February 9 2012 Brian Hughes at Psychology Science & Human Values That Autism Story: How Psychologists Get It Wrong (But Sometimes Get It Right)
48. February 9 2012 Sharon at The Tumultous Truth Enough with The Bettleheim BS
49. February 9 2012 3Laine at Irish Autistic Action Tony Humphreys, Autism Myths and Market Niche 
50. February 9 2012 Mary O’Grady and Janet at The Irish Times A Dishonour to Loving and Caring Parents
51. February 9 2012 Irish Journal Controversial Autism Article Should Be Retracted
52. February 10 2012 Stephen Rogers at The Irish Examiner Comments Likely to Cause Upset
53. February 10 2012 Fidget Jones at Fidget Jones Diary I Could Hardly Believe My Ears
54. February 10 2012 Sharon F at The Family Voyage A Half-Hearted Apology from The Irish Examiner
55. February 10 2012 Looking for Blue Sky at The Irish Journal Does Tony Humpreys Believe I Don't Love My Children Enough
56. February 11 2012 Kieran Kennedy at The Irish Examiner Don't Shoot the Messenger
57. February 11 2012 Senator Mary Moran at Irish Digest Calls for Apology over Autism Article
58. February 12 2012 at Jacinta Corrigan at The Irish Examiner Others Don't Have a National Platform  
59. February 12 2012 Lisa Maree Domitan at Autism Letter to the Editor--With Love
60. February 13 2012 Doireanne Obrian Autism and Siblings This One's For the Parents
61. February 13 2020 SharonF at The Family Voyage Claire Byrne's Interview with Tony Humphreys
62. February 14 2012 Ronan McGreevy at Irish Times Reilly Calls Autism Claims Outrageous
63. February 14 2012 at Adelina Campos at Irish Herald Reilly:Psychologist Insulted Me As An Autism Dad
64. February 14 2012 at Irish Journal: Insulting and Outrageous James Reilly Slams Tony Humphreys
65. February 14 2012 Conall Ó Fátharta at Irish Examiner Reilly: Humphreys' Autism Comments Outrageous
66. February 14 2012 SharonF at The Family Voyage The Good News According to Tony

Tony Humphreys Resources

• Keynote Talk, Donegal Childcare Committee Conference 2011 (60 minute video)
• Interview Tony Humphries "Authentic Leadership" Pt I
• Interview Tony Humphries "Authentic Leadership" Pt II
• Interview Tony Humphries "Authentic Leadership" Pt III
• Interview Tony Humphries "Authentic Leadership" Pt IV

CuriOdyssey A San Francisco Bay Area Treasure of Science

I spent yesterday afternoon revisiting CuriOdyssey (formerly the Coyote Point Museum: read this on the name change), a small jewel of a museum.  The inside exhibits are kid-friendly, interactive, and well-thought out.  The outside exhibits are of non-releasable animals illustrative of some of the species native to the San Francisco Bay Area:

CuriOdyssey's goal - through exhibits, education programs, and camps - is to provide up close and personal experiences with the natural world. To do that, we regularly encourage kids to interact directly with phenomena that they see around them every day. We don't use fake things to teach children about science and nature. Instead, we give them real things to explore - like water, sun images, colored lights, sand, and water. By doing that we stimulate their curiosity and encourage the learning process.

Most of my time was spent with Executive Director Rachel Meyer, which was like meeting an old friend.  The main topics:

• Institutions like CuriOdyssey and communicating the wonder & excitement of science
• My notion that there's a loosely linked "tribe" (for lack of a better world) of folks who are invested in communicating science.  We touched on:
  • Science Online (I encouraged her to attend ScienceOnline 2013)
  • DoubleX Science
  • BoingBoing Science (I had previously forwarded Maggie Koerth-Baker's My Favorite Museum Exhibit post)
  • David Kroll's new job...
  • The whole "Maker Movement" -- more than Maker Faire
• Science education in k-8, in the classroom and elsewhere.