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How Neurotribes made the Holocaust personal for me

14 Nov

I firmly believe that all people are my people. That I have to accept that my people were both the victims and the villains of history. I weep for my people who have suffered, and I feel shame for the actions of those who perpetrated those crimes.

I firmly believe this. Now, it’s one thing to say, “the people who suffered in the Holocaust were my people” and to feel that very real pain. But, as I found out, there is a whole different level when it really becomes personal.

And that’s what happened when I read Steve Silberman’s Neurotribes. Actually, it happened when I Steve was writing the book and shared some of his research with me.

You see, I am not Jewish. I am not Roma. I am not gay. My disability is not major. In short, I am not any of these or the other peoples targeted by the Holocaust.

I am, however, the father of a child who would never have made it through the Holocaust. And it never really struck home until Neurotribes.

Steve lays out in his book how the framework for the Holocaust was built starting with one person. A disable child. A disabled child in a time when the culture (and not just in Germany) made having a disabled child a shame for a family. A burden. Someone to be rid of.

Generally, being “rid of” meant institutionalization, although there appears to have been an unofficial euthenasia program going on in maternity wards. In 1939, one set of parents took the next step: they asked their doctor to “put to sleep” their disabled child. Years before a researcher had surveyed parents of disabled children and found that many would approve of their child’s death, but didn’t want to officially know. This step was something different. His own parents asked for his death. There was no law that would allow that, but in approving this child’s death, the legal framework was created that would grow into the murder of millions of people.

Let me pause for a moment here. I can’t read that, hear that, think about that and not see my kid’s face. Not see the look of absolute trust, of love, that I see in that face every day.

And think of betrayal. And think of the face of kids as they were taken from their families. The faces of kids as they landed in horrible places before their deaths. Faces like my own child’s face.

It’s horrible, absolutely horrible, to think about the atrocities of the Holocaust. Those who died have been and always will be my people. But, yes, this makes it more personal. Much more painful to me. I wish I were a better person and didn’t need that personal connection to feel this pain.

Steve called me at one point when he was writing his book. He read me some of the material he had found, about how children like mine were so disregarded that their own parents gave them over for death.

I went silent for a long time. Not because I was being solemn, but I literally could not speak. My child’s face. That’s all I could think of. Love. Trust. And, yes, betrayal. A look I can, thankfully, only imagine.

We will never let this happen again. Of course I believe in that. Strongly. And I weep for the fact that, yes, genocide has happened in my lifetime and, yes, my America has not acted vigorously. I have not acted vigorously. But with the story of Gerhard Kretschmar, my connection goes beyond belief. It now goes to my heart and soul. Again, I wish I were a better person and it didn’t take his story to drive this home so deeply.


by Matt Carey

Thank you to Lorna Wing, Ruth Christ Sullivan and so many more

4 Nov

Last weekend I was having lunch with my kid. Yes, we interact a great deal in these lunches but, yes, I also take some time to read. I was re-reading Steve Silberman’s book Neurotribes. There is a great deal of discussion in Neurotribes of people who changed how we understand what autism is, as well as how we (we =autistics and non autistics) relate to autistic people. Much of this comes out in one of the last chapters, where the discussion of how the film Rain Man came to be produced. Two of the many names that came up were Lorna Wing and Ruth Christ Sullivan. Both were parents of children with very high support needs. Especially in their time, the people involved in shaping the understanding of autism and autistics were largely parents.

Both Wing and Sullivan had children with high support needs. And, yet, Wing was instrumental in bringing about the understanding that autism is not just about people who were like her child. Wing brought the work of Hans Asperger from out of obscurity. None of this “not like my child” stuff. Sullivan helped found the National Society for Autistic Children (what we know today as the Autism Society of America). She was lobbied to get special education passed in the U.S..

And as I read about them, again, I was struck with, “I never wanted to be a part of advocacy. I just want to live my life with my family.” I want to quietly eat lunch with my kid and read books, and probably not autism related books.

It wasn’t until later that a few things dawned on me.

I was sitting in a restaurant, having lunch with my kid. A kid who is very, very clearly autistic. And who was being very, very obviously autistic. Something Lorna Wing and Ruth Christ Sullivan almost certainly couldn’t do. And something that is only possible now because people like them (as well as many others, including autistics) accomplished in acceptance.

Seriously, in their day I would have been asked to take my “retard” kid out of the restaurant and not come back.

I am able to sit in a restaurant because my kid attends an excellent school. I won’t go into details, but, yeah, good school = better life for all of us. And without special education laws that wouldn’t happen. And without the understanding of how to support autistics, brought about by so many that came before me, a good school wouldn’t even exist, law or no law. That school and our opportunity to send our kid there exists because of the hard work of so many people who came before me.

I’m no Lorna Wing. I’m no Ruth Christ Sullivan. I’m not one of the many autistics who have helped change the world–autistics who are “not like my kid” but who have, nonetheless, helped get my kid and me into a world where we can sit on a quiet Saturday afternoon and eat noodles. One of us being clearly autistic, and the other reading a book. And most of all, both of us welcomed.

So I’ll try to keep doing what I can to help keep progress happening.

by Matt Carey

TPGA: Black and Autistic – Is There Room at the Advocacy Table?

8 Jul

An excellent article came out on the Thinking Person’s Guide to Autism last month: Black and Autistic – Is There Room at the Advocacy Table?

This article speaks to me because it takes on two topics that are very important to me. First, the under diagnosing and under serving of racial/ethnic minorities in the U.S.. Second, the recent cynical abuse of the African American community by people who are antagonistic towards vaccines.

In Black and Autistic – Is There Room at the Advocacy Table?, Dr. Pierrette Mimi Poinsett gives her perspective. Here’s one paragraph:

As both a Black pediatrician and mother of a son with severe mental health and learning disorders, I know that vaccines prevent diseases, save lives, and do not cause autism. Many studies unequivocally show that there is no connection between vaccine components and the development of autism. Autism manifests independently of the vaccine schedule. The reality is that autism is a complex neurodevelopmental condition that likely has both genetic and environmental components – components that do not include vaccines.

The full article is brief and to the point (my discussion is longer than the original article). I encourage readers to go to TPGA and read it.

This said, let me add a few thoughts of my own.

First, we do a poor job as a society in supporting people with disabilities, but this is a much bigger issue in racial/ethnic minority communities. This is very obvious. I found this over and over as I first explored the question of whether autism was an epidemic caused by vaccines. Countering this failure by our society has been a topic of my advocacy here, on the IACC and elsewhere.

Over the years it has been extremely frustrating to watch the groups who claim vaccines-cause autism deny this under diagnosing and under serving. The fact is that almost all autism prevalence studies show a lower apparent prevalence in minorities. And this presents a problem to the groups promoting autism-as-vaccine-injury: they need to explain why would vaccines (in their view) not affect minorities as much as non minorities?

I will also point out that these vaccines-cause-autism groups seem to be conveniently ignoring their past. Consider this example, an excerpt from an Age of Autism blog article from a few years ago (The Tipping Point: Questions about Autism, History, Race and Melanin)

Two years ago, it was unknown whether African American or Hispanic children had lower rates of autism than white children. Now there’s evidence—for what it’s worth— that certain groups are less affected.

A few years ago they were claiming that the lower rates of autism identification meant that African American and Hispanic children were “less affected” by vaccines. Now, with Brian Hooker’s (retracted) re-analysis of an old CDC dataset, they are claiming the opposite. Either way, they are wrong.

Why do they twist themselves into these logical pretzels? They have to accept that autism prevalence numbers are accurate counts of autistics (they aren’t) in order to support the idea of an epidemic. If they accept the fact that we still not diagnosing all autistics, then the data that shows an epidemic is in question. African Americans and Hispanics have lower reported prevalence numbers in the CDC autism studies. So they are forced to come up with explanations for some groups being “less affected”.

Getting back to that Age of Autism article we read:

Until it unfolded that the highest rate of autism in the world might be among the Minnesota Somali (1/28 or 1/26 depending on the source), it was a vague impression within the vaccine injury community that autism was, for lack of a better expression, a “blonde disease” or even a “redhead disease”. It just seemed to many that, with some exceptions, the paler the kid, the more likely they’d be impacted.

As we now know, the autism prevalence in the Minnesota Somali community is the same as the rest of the community around them. Moving past that point, did you catch that “blond disease” comment? Yes, rather than try to solve the problem of actually helping solve the problem of under diagnosis and lack of services in minority communities, they went into full denial mode and were labeling autism as a “blonde disease”. The same writer then goes into a complex (and confused) argument about how melanin is protective against mercury poisoning.

Did I mention that these Age of Autism articles are confused? The author ties herself into logical knots trying to cover all aspects of the discussion, while considering the conspiracy possibilities of each angle. Consider this line from the article:

On the other hand, if the CDC merely underreported rates of autism among minorities as part of a cover up of lack of assistance of minority children with autism, it would be appalling but not surprising.

Such a profound lack of awareness of facts there. First off, the CDC has been clear that the racial/ethnic disparities could be due to lower identification rates. CDC tends to be conservative in their language, but this early CDC report makes it clear that the disparities could be driven by socioeconomic factors. By this year’s report, CDC are actively calling for “[t]argeted strategies are needed to increase awareness and identification of ASD in minority communities.”

And, of course, there’s that “but not surprising” comment from the Age of Autism. Because one can expect people at the CDC, people who have dedicated their lives to helping people with disabilities, to be engaging in “cover ups”. One can believe this, if one abandons logical thinking. Ironically, it’s the Age of Autism and like-minded people who have abandoned their responsibility to advocate for communities with under-diagnosed autism. Yes, AoA, this is a big example of where you show that you are fake autism advocates and will abandon our community for your own attacks on vaccines.

We can also read this rather astounding logical pretzel–if vaccines don’t affect minorities as much, then that would mean that the CDC and others are somehow less evil than expected. No really, read this:

But if that disparity in autism incidence is real, considering government health agencies’ and mainstream medicine’s history of supporting racist policies like the Federal Violence Initiatives, etc., if differences in melanin or other forms of natural resistance among certain minorities do play a protective role against vaccine toxins, then one thing would be clear: the epidemic probably wasn’t planned. That’s because these same “eugenitic” general authorities and often racially exploitative pharmaceutical corporations (deaths from Pfizer’s Trovan in Nigeria?) would probably never have deliberately culled white children over black and Hispanic in the US.

Yes, somehow in their eugenic plan to use vaccines to to eliminate racial/ethnic minorities, the CDC missed the mark and “culled” whites instead. Per the Age of Autism’s amazing logic.

All this rather than AoA actually advocating for better awareness, better access to diagnosis, better access to services in racial/ethnic communities. You know, the sorts of things the CDC and research community have been working on for some time.

But now with bad Wakefield documentaries and junk science from Brian Hooker the African American community is no longer seen as a liability to the “vaccines-cause-autism” movement.

The sudden turnaround to embrace the African American community is so very cynical and hypocritical.

I could go on as I feel very strongly about the failure of our society to serve racial/ethnic minority communities. But I see that I’ve already written more than Dr. Pierrette Mimi Poinsett did in her excellent article: Black and Autistic – Is There Room at the Advocacy Table?.


By Matt Carey

The perils of reading history backwards: John Donvan and Caren Zucker, In a Different Key: The Story of Autism, Penguin 2016

20 May

John Donvan and Caren Zucker, In a Different Key: The Story of Autism, Penguin 2016

Hard on the heels of Steve Silberman’s award winning Neurotribes comes another grand scale history of autism, at 688 pages, even exceeding the 544 pages of its predecessor. (See http://www.spiked-online.com/review_of_books/article/why-we-shouldnt-celebrate-autism/17468#.VrST-MvcuAg)

The books have much in common: both are written by journalists with an eye for story and character. Both provide comprehensive accounts of the clinical and scientific advances of the past half century, and offer sketches of key figures on both sides of the Atlantic. They cover issues of institutionalisation and de-institutionalisation, parental campaigns (challenging professionals and bureaucrats to raise awareness, provide education and social support), and controversies (over causation, diagnostic labels, treatments, interventions and ‘cures’) and the new wave of internet-facilitated activism by adult autistics.

These histories also share common weaknesses.* Apart from their inordinate length, the narratives are often poorly organised and tend to favour description over analysis – Donvan and Zucker seem particularly reluctant to make judgements on the contribution of authorities or draw conclusions in relation to controversies. For example, in their discussion of the late Ivar Lovaas, the pioneer of ‘applied behaviour analysis’, they criticise his use of ‘aversive’ punishments to reinforce changes in behaviour – though such methods were commonplace in homes throughout the Western world up to the 1980s – and they also recycle gossip about his womanising. But they fail to provide any answers to the questions about whether modern developments of these techniques are legitimate or effective in teaching children with autism.

The authors’ proclivity for retrospective moral judgements (also a feature of Silberman’s book) gets them into murkier waters in their accounts of the work of the two authorities who first advanced the label ‘autism’ in the 1940s – Leo Kanner in the USA and Hans Asperger in Austria. From a perspective that assumes a contemporary state of enlightenment, they adopt a distinctly sanctimonious posture towards the prejudices of the past, notably in relation to issues of sexuality and race, as well as diverse forms of disability and difference, where cultural attitudes have changed dramatically over recent decades. Their criticisms of both Kanner and Asperger for their accommodations to the doctrines of eugenics fail to take account of the strength of the scientific and medical consensus supporting these theories in the first half of the twentieth century. They also seem to have little sense of the mass psychosis into which Germany and Austria in general and the medical profession in particular had descended in the period of the Third Reich. (See Robert Jay Lifton, The Nazi Doctors: Medical Killing and the Psychology of Genocide, 1986 and Saskia Baron, Science and the Swastika: The Deadly Experiment; Science and the Swastika: Hitler’s Biological Soldiers, https://vimeo.com/user6162058)

Donvan and Zucker are critical of Kanner for his approval of the sterilisation of individuals with severe learning disabilities (such procedures were carried out on a larger scale in the USA than in Germany prior to the Nazi period), even though he opposed a proposal for euthanasia, made in a leading psychiatric journal, in 1942. In relation to Asperger, In A Different Key repeats allegations made by the Austrian historian Herwig Czech in a 2010 lecture, that he made excessive compromises with the Nazi Party and was complicit in the killing of children with severe disabilities in wartime Vienna. The main problem with these allegations is that they have only the status of hearsay – though it is five years since Czech’s lecture, his evidence has not yet been published in a form which allows other authorities to scrutinise his claims and decide on their authenticity. An additional problem is that the authors fail to draw out the consequences for our evaluation of Asperger’s work, and the status of his eponymous syndrome.

Donvan and Zucker begin and end their history of autism with the story of Donald Triplett, ‘Case 1’ in Kanner’s 1943 paper that launched the diagnosis of autism into the world. Now in his early eighties, Donald is still living in his family house (though his parents are long dead) in the small town of Forest, Mississippi, where he enjoys a good quality of life in a sympathetic and supportive community. It is a heart-warming story – already told by the authors in an article in The Atlantic in 2010 (and also included in Silberman’s book) – and it reflects significant progress in the understanding and acceptance of autism over the course of Donald’s lifetime. Unfortunately, such positive outcomes are far from universal, either in the USA or in Britain, where almost every day brings new stories of people with autism suffering from mental health problems and from neglect or ill-treatment in the context of grossly inadequate therapeutic and social care services. (Meng Chuan-Lai, Simon Baron-Cohen, Identifying the lost generation of adults with autistic spectrum conditions, Lancet Psychiatry 2015; 2: 1013–27.) A recent report from Scandinavia confirms dramatically higher rates of mortality, affecting individuals across the autistic spectrum, from a wide range of medical causes, epilepsy and suicide linked to mental health problems. (Tatja Hirvikoski, et al, Premature Mortality in Autistic Spectrum Disorders, British Journal of Psychiatry, 20 November 2015, DOI: 10.1192/bjp/114.160.192).

In his thoughtful and challenging survey of the politics of identity associated with diverse forms of disability, Andrew Solomon comments on the particularly ‘polarised and fragmented’ autism community. (Andrew Solomon, Far From the Tree: parents, children and the search for identity, 2012). He contrasts this with the sphere of deafness, in which ‘medicine and activism are galloping’ – whilst in autism ‘both are trudging’. Whereas, in other forms of disability, medical advances have led to a decline in prevalence and severity, in autism, prevalence has risen apparently inexorably – in the absence of any significant advance in terms of therapeutic intervention. Though Donvan and Zucker, like Silberman, have made a valuable contribution in recording the key events in the rise of autism over the past half century, this particular chronicle still awaits rigorous historical analysis.

Michael Fitzpatrick 7 February 2016

*One is an occasional inaccuracy: Nikolas Tinbergen, associated with ‘holding therapy’, was an ethologist – not an ‘ornithologist’; Andrew Wakefield did not, in his notorious 1998 Lancet paper, report ‘traces of measles virus in the intestinal tracts’ of children with autism.

 

Shannon Rosa: Don’t Use My Autistic Son as a Reason Not to Vaccinate

10 Feb

Shannon Rosa is one of the Thinking Person’s Guide to Autism team. Her son Leo is extremely cool, and is autistic. The has a great perspective on the autism/vaccine question in that she initially believed the idea.

She was interviewed by The Stir in December and that interview is well worth reading: Don’t Use My Autistic Son as a Reason Not to Vaccinate

Here is the introduction from that interview (the full interview is at The Stir)

Shannon Des Roches Rosa isn’t the sort of woman you’d expect to see on Capitol Hill, advocating for vaccines for children. After all, when Rosa’s son Leo was diagnosed with autism in 2003, the California mom swore off immunizing her kids. Her youngest child, India, was 3 by the time she was vaccinated. And yet, today, at 10 India is fully vaccinated, as is Leo and Rosa’s older daughter, Zelly.

Rosa is the mother of an autistic child who came around to the safety of vaccines. And after allowing fear to rule her life for four years, she’s become a vocal advocate for life-saving immunizations, working with the United Nations’ Shot @Life campaign, Voices for Vaccines and other organizations to spread the word about vaccine safety.

As mother of an autistic child, the editor of Thinking Person’s Guide to Autism says she feels it’s her “ethical duty” to speak out on the behalf of vaccines … and her son.

Rosa spoke to The Stir from her California home about why she vaccinates … and why she refuses to let her son be used as a fear tactic in the war against vaccines.

The rest can be found at Don’t Use My Autistic Son as a Reason Not to Vaccinate


By Matt Carey

Thinking Person’s Guide to Autism: How ASAN Helped Issy Stapleton Get Justice

18 Nov

Isabelle (Issy) Stapleton is an autistic teenager. Her mother, Kelli, was recently sentenced in the attempted murder of Isabelle. The Thinking Person’s Guide to Autism has an interview with Autistic Self Advocacy Network’s Samantha Crane on How ASAN Helped Issy Stapleton Get Justice.

Here’s the TPGA introduction to the article:

Kelli Stapleton was recently sentenced to 10 to 22 years in prison for child abuse, after attempting to kill her autistic teen daughter Issy. We spoke with lawyer Samantha Crane, who is the Autistic Self-Advocacy Network’s Director of Public Policy, about ASAN’s efforts on the Stapleton case: both in helping the prosecution send the message that disability does not justify murder, and in urging the court to ensure Issy saw the same justice as any other victim of felony child abuse.

The full interview can be read at How ASAN Helped Issy Stapleton Get Justice


By Matt Carey

Emily Willingham: winner of the 2014 John Maddox Prize for Standing up for Science

28 Oct

Emily Willingham is one of the best writers on the science and social aspects of autism. She also writes on other topics and is an accomplished researcher. Her journalism can be found at her site, EmilyWillinghamPhD.com, The Thinking Person’s Guide to Autism (the Site and the Book), DoubleXScience, Forbes, and elsewhere.

With all that in mind, it’s great to see that she’s been recognized for her work. SenseAboutScience.org has announced that she will share the 2014 John Maddox Prize for Standing up for Science:

Dr Emily Willingham and Dr David Robert Grimes are the two winners of the 2014 John Maddox Prize for Standing up for Science.

The announcement notes:

The judges awarded the prize to freelance journalist Dr Emily Willingham and early career scientist Dr David Robert Grimes for courage in promoting science and evidence on a matter of public interest, despite facing difficulty and hostility in doing so. The winners equally embody the spirit of the prize and, at this relatively early stage in their lives, have yet to receive recognition for their work bringing science and evidence to the public. Both Emily Willingham and David Grimes reflect Sir John Maddox’s passion for investigative journalism and for social engagement by young scientists.

On Emily Willingham in specific:

Emily Willingham, a US writer, has brought discussion about evidence, from school shootings to home birth, to large audiences through her writing. She has continued to reach across conflict and disputes about evidence to the people trying to make sense of them. She is facing a lawsuit for an article about the purported link between vaccines and autism.

The Prize is a joint initiative of the science journal Nature, the Kohn Foundation, and the charity Sense About Science. The late Sir John Maddox, FRS, was editor of Nature for 22 years and a founding trustee of Sense About Science.

And a statement by Michael Fitzpatrick, doctor, autism parent, writer and contributer to Left Brain/Right Brain:

Dr Michael Fitzpatrick, author MMR and Autism: What Parents Need to Know and trustee of Sense About Science, responded to the news about Emily Willingham: “She has provided a particularly valuable service in confronting specious theories attributing autism to diverse environmental agents, from milk and vaccines to endocrine disrupters and maternal antibodies. She has also exposed quack treatments for autism and challenged ill-informed reports suggesting a diagnosis of Asperger’s syndrome as an explanation of the behaviour of serial killers (pointing out that people with autism are much more likely to be victims than perpetrators of violent crime). As co-editor of the excellent Thinking Person’s Guide to Autism, she has helped to equip parents and people with autism with a critical approach to the evaluation of claims made by researchers and therapists alike.”

The full article is at SenseAboutScience.org.

by Matt Carey