When your normalcy gets too big.

NTs who struggle with theory of mind.

Last week I spent a very pleasant and productive two days attending a conference organized by Autism West Midlands and the Autism Awareness Centre. It was very well organized and the content was both interesting and practical. I also had the pleasure of meeting Maureen Bennie, one of the organizers, whom readers may remember from an earlier blog post of mine. My only regret was that I had to leave early to catch my train and so missed the closing presentation, “Understanding My Autism” by John Simpson. 

The headline speaker was Temple Grandin. Having read her books and heard her speak before, I found little that was new in  her presentation. She did make it abundantly clear that she struggled with abstract concepts and had to be able to associate them with visual images or concrete examples. But during questions a few people seemed unble to grasp this and asked questions in very general terms. When Temple asked them to be more specific they continued to speak in generalities.

So much for our neurotypical talent for empathy and theory of mind. It seems to me that we sometimes assume that others share our point of view rather than actually try to see things through their eyes. And when they do not share our point of view we sometimes feel threatened. I have even had one parent ask why I was trying to harm her children because I was critical of chelation! In my mind empathy is about being able to identify with the other and accept difference. Expecting everyone to  share your viewpoint may work most of the time, but it seems less like EMpathy and more like MEpathy to me.

REsearch or MEsearch

To return to the conference, the bulk of the presentations were by Kari Dunn Buron. She has written a booklet, originally titled “When my autism gets too big,” which has been retitled for marketing reasons as “When my worries get too big,” and “The Incredible 5-Point Scale.” I have already found them useful, both for helping students  to identify their emotions and to manage their behaviour, and for helping staff to reframe their attitudes and responses to student behaviour.

At one point during her presentations Kari described how she had organized a year’s sabbatical to visit experts in the various disciplines that were relevant to her work with autistic children and teens. Many of them were totally unfamiliar with each other’s research. For example Nowicki and Duke coined the word dyssemia for the nonverbal social communication deficit described in their book, Helping the Child Who Doesn’t Fit In.  Their Dyssemia Rating Scale describes a lot of the difficulties experienced by autistics. But these guidelines were developed at a time when autism was generally associated with mental retardation. Their first book was published two years before Asperger Disorder was added to the DSM-IV. A child who, inter alia, was often described by other children as dumb, but usually is average or above average in intelligence had a better chance of being identified as dyssemic than autistic, if they were identified at all. Nowicki and Duke closed down their website, Dyssemia Inc in 2006, perhaps after they learned about Asperger Syndrome from Kari Dunn Buron?

From Theory to Practice

Kari also quoted Ami Klin as saying that in autism, educational practice lags behind research by 20 years. I took this as a reference to the dominance of ABA in North America and a hint that it was based on outdated research. But I could be wrong. Kari’s basic message was that

Autism is a disorder of social cognition and problems of social understanding can cause social anxiety which can lead to challenging behaviour.

As a consequence, instead of directly addressing the behaviour, Kari suggests we teach our students skills to help identify and manage their stress by making wise choices. But we cannot expect our students to do that unless we as parents and educators also make wise choices.

The Unwise Choice

“That is wrong! He has to stop! It is my job to make him stop!” This leads to confrontation; time spent in crisis; negative routines. If you are successful the person is controlled but at what cost to him and to you?

The Wise Choice

“Well. that was uncomfortable. He could learn another way. It is my job to teach him.” This leads to teaching time devoted to learning positive routines. The person is empowered and we all do a lot better.

This is cribbed wholesale from one of Kari’s conference handouts.  I like it because Kari is asking us to do exactly what we expect of our students  – to reflect upon  the situation and weigh up our options before we act. We do not always manage it, despite all our advantages in social cognition. Yet we expect our students to do it. This brings me back to the start of the conference when some of Temple’s interlocutor’s failed to understand her but still expected her to read their minds.

I am sure I have made similar mistakes in the past and I expect to make mistakes in the future. Kari enjoins us to learn from our mistakes, to regard problematic behaviour as evidence of a learning difficulty and to use autistic strengths to correct it. While I found Kari’s overall message positive and helpful and respectful of autistic people, I wonder if, from the autistic side, it appears that we NTs are the ones with a disorder of social cognition when it comes to understanding them. Perhaps someone should write a booklet for us, “When my normalcy gets too big,” and give us a 5 point scale.

Science, fiction and factions

THE APPLIANCE OF SCIENCE

Kev has just blogged about a piece of research that examines the effects of Rhesus immune globulin (RhIg) on mothers of autistic children. RhIg is routinely given to pregnant women who are Rhesus negative to stop their immune systems from attacking their unborn babies. Because RhIg used to contain thimerosal, anti vaccine pressure groups who blame thimerosal for causing autism, have tried to implicate RhIg as well. A recent attempt to link an RhIg called Rhogam and Autism collapsed when the judge decided that the expert witnesses in the case were not up to the required standard. Kev blogged this as did Autism Diva, Orac, and Prometheus while Kathleen provided a HTML version of the decision on neurodiversity.com

According to a press release issued by the University of Missouri-Columbia

The results showed that in children with autism, Rh negative status was no higher in their mothers than in the general population, that exposure to RhIg (preserved with thimerosal) before birth was no higher and that pregnancies were not more likely to be Rh incompatible.

The press release quotes researcher, Judith Miles as saying,

We hope this report of no association between autism, Rh negativity and thimerosal exposure during pregnancy will offset some of the decreased compliance with immunization recommendations which is known to increase morbidity and mortality from childhood infectious diseases.

KNEE JERK REACTION AND FOOT IN MOUTH

This has produced a predictable response from Safe Minds spokesman, Mark Blaxhill, which Kev has demolished. But others are even more intemperate. Take Michael Wagnitz, for example. Writing online for the American Chronicle, in the space of 500 words he manages to imply that:

• The researchers have been bought off by Johnson and Johnson to fabricate results that will aid them in vaccine damage litigation. Specifically he accuses them of suppressing data.
  • Originally, it was stated that the study contained 47 mothers with more than one child with autism. The published study lists only 16 such cases. Where did the other 31 cases go? Did they just disappear because they did not support her conclusion? Is this proper scientific ethics? This “data adjusting” is becoming quite common by mainstream autism researchers
• They are deliberately sacrificing the interests of autistic children to promote their careers.
  • As a major player in the autism is a psychiatric condition caused by some unknown gene, the author knows that billions of dollars in research money is out there to be had. What will become of these “mercury apologists” if these kids ever receive proper treatment for what is causing their illness? Their multi-million dollars of funding will dry up. Their arrogant, controlling power trips will be over. They will become irrelevant.
• A previous paper was “solicited” by Pediatrics and contained serious factual errors 
  • One paper cited, Nelson and Bauman 2003, was a paper solicited by Pediatrics to say that thimerosal does not cause autism. This paper was received and published on the same day. Did this paper even go through the peer review process? This paper is infamous for stating that ethyl mercury does not enter the brain.

Wagnitz is either ignorant or a liar. Here is a quote from the original paper.

 The passage of methyl mercury across the blood-brain barrier is facilitated by an active transport mechanism, whereas the passage of ethyl mercury into the brain does not have such a transport system and is further hindered by its larger molecular size and faster decomposition.³² At equivalent doses, higher levels of mercury have been found in the blood and less in brain following administration of ethyl mercury than methyl mercury.³³ These findings support the observation that the risk of toxicity from ethyl mercury is overestimated by comparison with the risk of intoxication from methyl mercury.³⁴ Ethyl mercury exposure has been reported to be more likely than methyl mercury to produce lesions of the spinal cord, skeletal muscle, and myocardium.⁸

In other words, Nelson and Bauman were arguing that exposure to ethyl mercury delivers less mercury to the brain than methyl mercury, not no mercury. Now, according to his byline on the American Chronicle, Michael Wagnitz has over 20 years experience evaluating materials for toxic metals. He currently works as a chemist in the toxicology section of a public health lab evaluating biological samples for lead and mercury. So I assume he knows how to read a journal article. Perhaps he was distracted by thoughts of his own vaccine damage case on behalf of his autistic child. This is a potential conflict of interest that he fails to mention in any of his articles about mercury and autism.

THE CURIOUS CASE OF …

Now, it is a curious fact that, while the mercury malicia automatically cast doubt on the credibility of any scientist whose work contradicts their case on the grounds that all scientists have sold their souls to big pharma and big government, if on the other hand a scientist can be persuaded to support their case, his or her scientific credentials are trumpeted to the heavens as incontrovertible proof of their reliability, impartiality and all round good guy credibility. Thuswise is Michael Wagnitz elevated to stardom by Ginger Taylor who gushes over the fact that Michael Wagnitz is an actual chemist who understands mercury.

AND FINALLY

Science operates via peer review. Someone or somebody’s research team suggests a hypothesis. Someone else comes up with an idea to test it. Somebody does the test and presents their work for publication. Fellow professional do the peer review. They look at the work and decide if it is worth publishing. It is. LUCKY YOU!

Peer review does not operate via bullying, lying, smear tactics or any other strawman or ad hominen attacks. This is in stark contrast to most of the outpourings of the litiginous mercury malicia. They are distorting science with their unreal and unscientific demand for certainty. They demand answers. Mostly all we have at present are questions.

Blogging about Thinking

Kev just nominated me for a Thinking Blogger award.

The official rules for participation in the Thinking Blogger Awards meme are as follows:

1. If, and only if, you get tagged, write a post with links to 5 blogs that make you think,
2. Link to this post so that people can easily find the exact origin of the meme,
3. Optional: Proudly display the ‘Thinking Blogger Award’ with a link to the post that you wrote.

Ilker Yoldas, the originator of this meme, also enjoins us to “Please, remember to tag blogs with real merits, i.e. relative content, and above all – blogs that really get you thinking!” Apart from feeling a buzz because Kev has nominated me in this category, I also feel obliged to choose carefully. This may be a bit of fun. But it is serious fun. It gives me an excuse to think about the themes that have informed this blog since its inception in November 2005.

• Debunking autism quackery and exposing its exploitation of parents’ fears.
  • This is really about exposing bad science and Ben Goldacre’s weekly BadScience column in the Guardian, also published as a blog, does this and so much more. He has taken down the Geiers, Wakefield, and their media friends like Melanie Phillips. http://www.badscience.net/
• Championing real parental concerns for their children because when these concerns are dismissed by mainstream practitioners it drives parents into the hands of the purveyors of autism quackery.
  • Sharon is one among many parents who writes honestly and thought provokingly about raising an autistic child. http://thefamilyvoyage.blogspot.com/
• Educating the professionals about the reality of autism because up to date knowledge is making existing practise redundant.
  • Michelle Dawson is a remarkable autistic adult whose collaborations with Profesor Mottron in Canada and  Professor Gernsbacher in the USA have done a lot to forward this aim. http://autismcrisis.blogspot.com
• Arguing for neurodiversity and autism acceptance because they can provide the basis for a positive intervention in the lives of of autistic people.
  • Probably http://ballastexistenz.autistics.org/ But as she may not wish to be tagged I offer The Joy of Autism as an alternative. Both challenge existing preconceptions about autism.
• Recognizing that within science there are legitimate differences and disputes. We can be on different sides while exercising mutual respect.
  • I would recommend a website but I have already exhausted my quota. Maybe next weekend I will find time to blog about this question exclusively. It does seem to me to be of the utmost importance that, as the cultish believers in anti=science sink into obsurity, we successfully engage with the intellectually valid disputes within the life sciences in which we find giants like Pinker against Rose and, if he had not died before his time from cancer, Gould against Dawkins. Arguments about genetic determinism and autopoeisis go to the heart of the disputes within the autism community about the consequences of seeking a cure versus the potential benefits of respect for the condition of autism.

Full Spectrum Resistance

There are a number of stock phrases that appear in media reports on autism with annoying regularity, phrases like:

• autism epidemic;
• this devastating disorder;
• the fastest growing developmental disorder.

They annoy me because they express ideas about autism that are either disputed or unproven. But their constant repetition leads them to be accepted as statements of fact. There are no epidemiological studies that demonstrate the existence of an epidemic. Indeed, there are good reasons not to believe in an autism epidemic. It only appears to be growing so fast if you include all the “mildly affected” (another annoying phrase) people who would not have been diagnosed 25 years ago when autism was considered a narrow disorder rather than today’s broad syndrome.

And who is devastated by autism? Is it the parents or their autistic children? And why are they devastated? Could it be the lack of services or the exclusion clauses in their health insurance that put those services out of reach? Some of us are devastated by the time, effort and money expended on debunking myths about vaccine induced epidemics and their corollary, the efforts to counter environmental theories of causation by finding genetic causes for autism.  We would prefer the money to be spent providing those services that have proven beneficial. For example

In cases of severe autism, for example, Attwood says: “When I started in the area 30 years ago, only 50 per cent acquired speech. Today, only 15 per cent don’t acquire speech.”

How many speech therapists could you buy with the £15 million of public money spent on the abortive anti-MMR litigation in the UK or the millions of dollars expended on the Omnibus autism proceedings in the USA? These proceedings are also on the brink of collapse unless the litigants can find three typical cases to come forward from the 4,500 at their disposal. Their prospects of  success appear to be diminishing.

Californian politician Rick Rollens is a fervent advocate for the link between vaccines and autism. He is also responsible for one of the most annoying media catch-all phrases, “full syndrome autism.” He means autistic disorder. But “full syndrome autism” deliberately suggests “worst case autism.” Rollens invites us to take all the negative aspects of autism and imagine them in a single child. He goes on to suggest that the year on year increases in the autistic caseload of the California Department of Developmental Services (CDDS) represents an epidemic of this worst case autism that is devastating the lives of children.

Jonathon has provided a consistent critique of Rollens’ use and abuse of CDDS statistics. Autism Diva has cast light on his bullying tactics.

Autism Diva sat across a table from Rick Rollens last year as Rollens accused a reputable scientist of being on the take, because that scientist had written things that tended to discount Rollens’ (dead) pet hypothesis of THE EPIDEMIC OF AUTISM. The scientist in question was not in the room and so couldn’t defend him or herself.

Whether he is wilfully ignorant and rude or just plain stupid, Rollen’s invention of full syndrome autism is now part of the language. An additional annoyance for me is that his kind of misinformation and pandering to prejudice always seem to lend itself to simplistic language that registers in the popular imagination, while rational rebuttals and refutations of this sort of nonsense appear counter-intuitive and long-winded.  To paraphrase William Booth, “Why should the devil have all the best slogans?”

 So imagine my delight when I came across the slogan, Full Spectrum Resistance.

 

 I really like the idea of countering “Full Syndrome Autism” with “Full Spectrum Resistance.” I found that slogan in a brochure for Marxism 2007, A Festival of Resistance. Marxism is an annual event in London that provides a platform for left wing thinkers and activists from round the world.

In the past Marxism has featured one of my favourite neuroscientists, Steven Rose. He will not be speaking this year. But his ideas about evolution, genes and human nature have had a persuasive influence on me. One of the few benefits of long distance air travel is that it gives you time to read. On a recent round trip to New Zealand I devoured two of Rose’s books, Lifelines and The 21st Century Brain. In Lifelines he argues against the overly deterministic theories encapsulated by Dawkin’s The Selfish Gene. His answer is to place the organism at the centre and explore the complexity of life. Genes play their part but do not determine the outcome. The subtitle Life Beyond Genes is an apposite summary of the book

The 21st Century Brain is equally good at tackling the reductionist tendencies in neuroscience and reasserting the conscious self as an active agent in the world against a vision which sees,

Human agency … reduced to an alphabet soup of As, Cs, Gs and Ts in sequences patterned by the selective force of evolution. whilst consciousness becomes some sort of dimmer switch controllng the flickering lights of neuronal activity. Humans are simply somewhat more complex thermostats fashioned out of carbon chemistry. [page 297]

This book is subtitled Explaining, Mending and Manipulating the Mind, which seems to summarize the aim of a lot of autism research. Unfortunately most of it follows the reductionist trend which Rose ascribes to the fact that many of those working in the biological sciences aspire to the mathematical precision and predictability of physics. He, on te other hand. positively revels in the “fuzzy way of thinking” or more formally the “epistomological pluralism ” that he deems essential if we are to embrace the complexities of life.

Disablism and autism

April was Autism Awareness Month in the USA. Its ending coincides with Blogging Against Disablism Day, May 1st. On this day we are invited to write on any subject, specific or general, personal, social or political, anything which states an objection to the differential treatment of disabled people.

So I thought I would write about the misrepresentation of autism in the media. There was  a lot of that last month. There were attempts to link autism to the tragedy at Virginia Tech. There were misleading press reports in the UK that ABA had doubled the IQ of autistic children. I could have selected any of the media coverage of an “autism epidemic” caused by exposure to environmental toxins, vaccines. Then there are all the articles which refer to autism as “this devastating disease.”

Instead I have chosen to focus on an article that does not contain a single mention of the words disease, epidemic, vaccines, mercury or cure. On the face of it this article is on our side. The take home message is that autism is a spectrum disorder with a massive range of abilities as well as disabilities. Instead of trying to cure them we can help autistic children by adapting our behaviour to meet their needs, especially their need to be able to reliably predict what is going to happen next. Quality education delivered by professionals who understand autism is the key to success. Multi-disciplinary diagnostic teams are necessary to make sure that autism is not missed or misdiagnosed as ADHD, OCD etc.

The problem is that it is easy to spot disablist thinking in the blatantly discriminatory articles. But the effect can be just as damaging in ostensibly sympathetic articles like this. Sometimes it can be more damaging because we are so relieved to read an article that appears to be on our side that we do not notice its implicit acceptance of many of the stereotypes that we are up against.

This is what I mean.

Last year, the department’s statistics showed 1,036 autism-afflicted students on file, said Susan Constable, director of the Autism Support Center for the department

Just as gay students are not afflicted with gayness, autistic students are not afflicted with autism. It is not something external to their lives. It is integral to who they are.

“Autism is no longer a low-incidence disorder in Rhode Island or nationally,” said Constable.

No longer? This suggests that, in line with the views of advocates of an autism epidemic, autism is on the increase. But the speaker falls into the trap of equating administrative incidence with actual incidence. The truth is that we do not know if autism has increased. We do know that about the time that US school districts were told to start recording autism the diagnostic criteria were broadened and trying to compare figures then and now is like trying to compare apples with oranges.

 Statistics indicate that more children will be diagnosed with autism this year than with AIDS, diabetes and cancer combined, according to the Autism Society of America. If diagnosis continues at this rate, the society estimates that autism could touch 4 million young people in the next decade.

The article states that the best treatment for autism is education.But it is the comparison with AIDS and cancer that will stay in the reader’s mind. The common cold is more common than AIDS, diabetes and cancer combined. But nobody ever compares the incidence of the common cold to cancer. By doing so with autism you inevitably suggest that the two are comparable qualitatively as well as quantitatively. 

Many teachers know they’ve had little or no training, but will still need to reach children with autism, Constable said.

Reach children with autism? This reflects the idea that autistic children are somehow cut off or unreachable. We return to this alien affliction of autism that stands between us and the child. So what is this training for? To understand the child and reach out to them on their own terms or to tear down the barrier of autism and rescue the child within?

These are all comon sense errors. You accept the common sense assumptions that dominate society rather than subject them to critical analysis. But once you do this you can easily slip into factual errors.

“Regressive is the type of autistic child that we are seeing really increase,” Constable said. “We know that there is a definite genetic link to autism because we see families who have two or more children with autism, but the numbers are growing too fast for this to be just genetic. There are definitely some environmental contributions that play a part in it but there have been no conclusive studies as to what those areas are.”

The erroneous assumption that an increase in  recorded cases equates to an increase in actual cases is repeated. Genetic autism is taken to mean identifiable from birth and is counterposed to regressive autism which is assumed to have an environmental cause and therefore environmental insult must account for the increase in numbers. In fact there is no evidence that regressive autism has increased. Nor is there any evidence to suggest that regressive autism is triggered by an environmental insult. There are many late onset disorders that are probably genetic in origin. Alzheimers is probably the most dramatic illustration of this.

And this is the point. Adopting faulty premises leads to faulty conclusions and the acceptance of unproven hypotheses as facts. Even the most well intentioned people can end up repeating damaging ideas as facts if they lack a theoretical framework that alerts them to this possibility.

So how did we get here? It is simple. A loud and unrepresentative minority have been capturing media attention and helping to set the agenda. It is time for a loud and representative majority to restore the balance.