Dec 11

Hello OLLI Interview: Autism in the Age of Neurodiversity

Advance publicity for my OLLI course on autism is in full swing. Last week (on December 6), I attended an Open House in Pittsfield and gave a short pitch, and then (on December 7) I appeared on local public access TV in a half-hour interview, available here.

The interview was a lot of fun, giving me a chance to give some of my background, and to tell my own story of discovering autism. The interviewer was kind enough to let me ramble on, and we ended up not having time to discuss one of the questions she had for me, and one related issue that I had been prepared to explain.

All of this will be covered during my course this winter, as I explore (and try to explode) some of the myths about autism.

The first missing item was one I had described to Virginia, in advance of our interview, that December 7 was always an emotional day for me, because it marked the anniversary of the death of the uncle I never knew. I described to her the almost unbearable sadness I experience when I think of how devastated my mother (and her parents) must have been to lose her only sibling.

Virginia, with her background in psychology, was aware that this account flew in the face of the common misconception that autistic people do not experience intense emotions, especially empathy. She asked me if I’d be willing to describe my experience, but, alas, we ran out of time.

Hans Asperger, one of the pioneers in describing autism, was very well aware of the rich emotional life of autistic children he met in his clinic. In commenting on his seminal 1944 paper, Uta Frith observed, “From Asperger’s descriptions throughout it is clear that he believed autistic children to be capable of having strong feelings, and to be disturbed only in their ability to manifest such feelings appropriately.”

I was also prepared to talk about one of the other myths of autism, as another example of the items that will be covered in my OLLI course. There is a thing called central coherence, often characterized as the ability to “see the forest for the trees.” Based on many research studies, it was mistakenly thought that weak central coherence was a central feature of autism.

To illustrate what had been done, here is an example of one of the tests that could have been used. 

A diagram such as this would have been presented to the research subjects with the question, “What do you see?” (Sometimes the same effect is created with geometrical shapes, such as having small squares within a large triangle.)

In results that were reproduced by several researchers, autistic people responded much more often than non-autistic people by naming the small letter (or shape) within the larger one. The conclusion reached by these researchers was that autistic people have (relative) difficulty seeing the larger picture.

“Whoa!” said MIT researcher Nancy Kanwisher. She suggested that maybe we are asking the wrong question. Given instructions that the answer being sought was “what is the larger image?” she found that autistic people performed almost identically (and perhaps a little better) on these same tests.

Her conclusion? Autistic people find the details more interesting, and that’s what they will report in an unstructured environment. They actually have no difficulty at all seeing the big picture. Bang! There goes another myth.

We’ll examine many such shortcomings of autism research, and discover ways that the autistic experience is genuinely different. I’m looking forward to a lively discussion.

Dec 01

2017 AANE Annual Conference: My Workshop on Language and Mythology

Click Here for an Outline of My Presentation

I will be conducting a workshop, as part of the December 2 AANE Annual Conference at Bentley University.

The outline is really just a teaser. I cannot possibly do justice to all of the topics listed, in the time allotted.

I hope to generate discussion and to get a feel for which topics (and maybe many others) might merit further exploration via some blog posts.

Just to be clear: the last section within the “Pathology” heading is meant to mock the kind of research commonly done, not necessarily to pick on this particular study. By using the language illustrated here (“pathology” and “abnormality” and “risk” and “inefficiency”) the researchers have clearly drawn their conclusions before they even begin their study. Adherents of the neurodiversity paradigm would flatly reject such derogatory labels being applied to autism. Instead, autism should be viewed as a different way of being, not as a “disorder.” The role of science should be to explore and explain differences, not to pass judgment on the natural order of things.

Dec 01

AANE Workshop: The Language and Mythology of Autism

The Language and Mythology of

Autism

The words we use reveal our values,

and the language we use can shape our beliefs.

To be autistic is to be neurodivergent,

and to be neurodivergent is to enjoy a different way of life.

Identity

Pathology

Euphemisms

 

Empathy

Functioning

Special Interests

 

Michael Forbes Wilcox, MA, CFA

http://www.mfw.us/blog/


 

Language

 

Identity

 

  • Neurodiverse versus Neurodivergent

  • IFL (Identity-First Language) “I am autistic.”

  • PFL (Person-First Language) “I am a person with autism.”

  • I am on the spectrum.”

  • Who gets to choose?

  • Is there a way to be inclusive?

  • The use of person-first language in scholarly writing may accentuate stigma

http://onlinelibrary.wiley.com/doi/10.1111/jcpp.12706/full

from: https://eclecticautistic.wordpress.com/2017/08/22/identity-first/

 

Pathology

 

  • Autism Recovery

  • The Social Model of Disability

“Autism is a disability when it is seen as a deficiency.”

  • Speaking versus Verbal

  • Comorbidity

  • Emotional Age

    • Stimming

    • Parent Organizations (cf. IACC spat)

    http://nosmag.org/parents-and-autistic-adults-clash-at-autism-committee-meeting-iacc-interagency-autism-coordinating-committee/

    http://www.mfw.us/blog/2014/07/15/whose-table-is-this-anyway/

    Abnormalities shown to first appear in brain networks involved in sensory processing

    • The origins of autism remain mysterious. What areas of the brain are involved, and when do the first signs appear? New findings published in Biological Psychiatry bring us closer to understanding the pathology of autism, and the point at which it begins to take shape in the human brain. Such knowledge will allow earlier interventions in the future and better outcomes for autistic children.

    • Scientists used a type of magnetic resonance imaging (MRI), known as diffusion weighted imaging, to measure the brain connectivity in 260 infants at the ages of 6 and 12 months, who had either high or low risks of autism. The lengths and strengths of the connections between brain regions was used to estimate the network efficiency, a measure of how well each region is connected to other regions. A previous study with 24-month-old children found that network efficiency in autistic children was lower in regions of the brain involved in language and other behaviours related to autism. The goal of this new study was to establish how early these abnormalities occur.

    http://publications.mcgill.ca/reporter/2017/08/pinpointing-the-origins-of-autism/

 

Euphemisms

 

  • HFA versus Asperger Syndrome

  • On the Spectrum

  • Our Kiddos

  • This Population

Mythology

 

Empathy

 

“From Asperger’s descriptions throughout it is clear that he believed autistic children to be capable of having strong feelings, and to be disturbed only in their ability to manifest such feelings appropriately.”

Uta Frith, on his 1944 paper

 

Functioning

 

Asperger said that [autism] encompassed an astonishingly broad cross section of people, from the most gifted to the most disabled. There seem to be nearly as many varieties of Autismus as there were autistic people.”

Steve Silberman in NeuroTribes, page 98

  • 50% of autistic people also have intellectual impairment”

  • one-third of autistics also have epilepsy”

  • Alexithymia

    Developmental “Delay” (as opposed to difference – cf. Kanwisher study)

  • Mirror Neurons

  • Altruism

  • Telephobia

  • Prosopagnosia

  • Mutism

  •  

Special Interests

 

Bleuler [1911] defined “autistic thinking” as

self-centered rumination and retreat into fantasy.”

Asperger observed that in “everything these children follow their own impulses and interests, regardless of the outside world.”

Silberman op. Cit.

 

Transition

 

A transition period is a period between two transition periods.”

George Stigler

 

Identification

 

Autdar” – is there such a thing?

How do we know someone is autistic?

Why do we identify as autistic?

 

Hall of Fame

 

  • Who gave this wonderful description of how the autistic mind works?

I am slow to learn and slow to forget that which I have learned.

My mind is like a piece of steel; very hard to scratch anything on it and almost impossible after you get it there to rub it out.

Bonus: which autistic person shares the same birthday?

 

Nov 28

Autism in the Age of Neurodiversity: Course Announcement

I am pleased to announce that I will be presenting a series of six lectures on autism in this winter’s Berkshire OLLI program. NB: the venue has been changed from BCC to Simon’s Rock.

One of my objectives will be to dispel some of the myths and misunderstandings around autism.

Here is everything you need to know. Feel free to contact me with any questions.

Nov 27

Does Our National Accounting System Reflect Our Values?

A rhetorical question, I’m afraid.

We (I’m wearing my Economist’s Hat here) have long been aware of the hidden cost of externalities, those insidious, unmeasured penalties incurred by society in a profit-driven economy.

In our national accounts, for example, we measure the dollar value of energy produced (such as electricity or gasoline), but we do not record the cost to society of consuming these goods. When consumers purchase electricity, we record that as a positive contribution to Gross Domestic Product (GDP), without considering the negative impacts (such as pollution, or the other detrimental health effects on miners) of its production.

Ironically, some of the costs that are later explicitly borne by society, such as rebuilding after a storm made more vicious by global climate change, or caring for people who suffer from lung disease, are counted as positive contributions to our well-being (at least, as measured by GDP).

For me, some recent publicity about the costs associated with recovering from this year’s hurricane season have brought home the point that our accounting system is not just loopy — it may actually be helping foster bad policy decisions.

There is something very wrong with an accounting system that considers storm damage a good thing. Yet, in effect, that’s what our national accounts do. This article in Weather Underground points out that actual costs may be higher than those mentioned here. Yet, even this (possibly lowball) estimate amounts to about ½% of GDP. And this was only one of the seriously damaging storms we have seen this year.

When (and if) the damage done by these storms is repaired, that economic activity will be recorded as a positive addition to GDP. No deduction will be made for the resources and assets that have been lost. So, in this example, $102 billion will be added to our GDP, but we will actually be no better off. Except, of course, that income will have been produced for those involved in the recovery effort, and there will be ripple effects as that income is spent throughout the economy. Still, if these storms had never happened, instead of spending money on repairs, we presumably could have used these same funds to build new schools or hospitals or to do any other number of useful public works.

Yet, the damage goes unrecorded. Note this blithe dismissal in the latest Treasury report on the economy:

As people in Houston repair their flood-damaged houses and replace their automobiles that were destroyed, all of this will be recorded as positive economic activity. Yet these people will be no better off than before the storm in any substantive way, and how do you account for the loss of family treasures such as photographs and documents?

In real ways, we, as a society, are now paying the piper for bad policies and decisions made over the past many years. Yet, no one is calling us to account for this in dollars and cents. Surely this is an oversight that can be corrected. But where is the political will to do so? Another rhetorical question, to be sure..

 

Nov 16

Carbon Sequestration: Our Only Hope?

I am a big fan of Elizabeth Kolbert’s writing. I’ve read just about everything she’s written in the past few years, and I also attended a talk she gave at a local college (she lives not too far from me). The most recent (November 20, 2017) issue of The New Yorker published a piece by her on the subject of stopping (and even reversing) the practice of adding carbon dioxide to our atmosphere.The article makes several important points, and I highly recommend it if you’d like to understand the necessity of this process, as well as the daunting challenges we face in making it a reality.

The United Nations has said,

In order to achieve the goals of the Paris Agreement, carbon dioxide removal is likely a necessary step.

Yet, there is no easy path forward. The technology is in its infancy, and it’s not clear how well it will scale up.

There are many moving parts, here, of course: technological, economic, and political.

The focus to date has been on reducing carbon dioxide emissions. This has led to an emphasis on renewable fuels, but the implementation in some areas leaves a lot to be desired. The production of ethanol, for example, creates large amounts of CO2 which is released into the atmosphere. Similarly, the burning of biofuels undoes the natural carbon sequestration that occurs when plants grow.

Part of the problem here is that there is no economic incentive to capture COemissions. Kolbert argues that we have made a mistake by treating carbon dioxide as an evil presence, rather than a waste product that, like sewage and trash, needs to be dealt with. She points out that it is unlikely the world will reduce, much less eliminate, carbon dioxide emissions anytime soon. The only path the stopping things from getting worse, in terms of the concentration of the gas in the atmosphere, is to capture it at its source of production and store it away safely in some form. Beyond that, it is necessary to remove some of the overabundant supply already in our air, which is creating climate change, and will continue to do so, almost no matter what we do now.

This is not a very upbeat article, because it starkly points out how bad things are at present, but at least it does offer a possible path forward, and that’s better than having no hope at all.

Nov 15

Before the Days of Dial Phones

In doing some research at the Stockbridge Library, my brother came across an article (reproduced below) that appeared in the Berkshire Eagle in 1958, five years after the events he described in his recent article. A related picture appeared the next day.

Notice the phone numbers given. I think dial phones came to Stockbridge in 1960. When they did, every number in town belonged to a single exchange, so in order to dial a number within Stockbridge, it was only necessary to dial the last four digits. Our number on South Lee Road was 3557. That replaced our old number of 246-J. The “J” indicated it was a party line, and we would answer only if we heard the correct number of rings.

Prior to dial phones, an operator directed the calls. As a small child, I lived on Park Street, where our number was 266. One day, when I came home from school, my mother was not around. I’m not sure that had ever happened before, and I didn’t quite know what to do. In those days, she worked at the church from time to time (she was the church secretary), and I decided to call there to see if she was there. I had not used the phone very much, but I did know that if you picked up the receiver, the voice of the operator would say, “Number, please” and you could tell her who you wanted to call. I didn’t know the number of the church, but I figured she would.

So I picked up the phone, and instead of what I expected, I heard “Operator” — I was dumbstruck, not knowing how to respond. What did she mean? Being flustered, I just hung up the receiver. I thought about it for a minute, and decided to try again. It had probably been a mistake, and if I tried again, I would get the expected “Number, please.” So I picked up the phone again, and again I heard “Operator.” Now I was totally at a loss, so I just stood there with my mouth open, not knowing what to say.

“Hello, can I help you?” I heard coming from the phone. Oh, yes, that was something I understood. “I want to call my mother at the church,” I said.

“Your mother is no longer at the church. She is visiting your grandmother at the library, and she will be home soon.”

“Okay, thank you.”

That is my earliest memory of being flummoxed by the disembodied voices that flow out of telephones. I have never been comfortable speaking on the phone, and to this day I pretty much don’t.

The grandmother just mentioned appears in the photograph below. I am seated in the front row, wearing my Little League uniform. I must have arrived from a game. I am sitting between Bob Chassell, on my right, and Dan Rinsma, two good friends of mine from those long-ago days. Many stories for another day.

The handwriting on the Eagle clippings is clearly recognizable as my grandmother’s.

 

Nov 12

Guest Blog: Historic Preservation in Stockbridge

My interest here is in the family connection, as well as my own memories of Stockbridge in the 1950s. I have reproduced here, without further comment, an article written by my brother that appeared in the Berkshire Edge recently.


The former Laurel Cottage, built around 1740, was a historically significant building in the town of Stockbridge.

On Wednesday, Sept. 16, 1953, the Berkshire Evening Eagle published an op-ed article penned by Grace Bidwell Wilcox, titled “The Ghosts of Laurel Cottage.” As curator of the Stockbridge Library’s historical room and a Bidwell family member, it appeared to be a last-ditch effort on my grandmother’s part to herald the historical value of the house and diplomatically bemoan the lack of enthusiasm for its preservation. David Wood – a teacher, author of local history and later director of the Norman Rockwell Museum at the Old Corner House – joined in the effort, writing a piece for the St. Paul’s Church newsletter. The house and land, just east of the current town offices – then owned by Helen Bidwell Lukeman, wife of sculptor Augustus Lukeman – was being taken by eminent domain for school and town use as a playground and park.

Laurel Cottage in Stockbridge

A sampling of the many ghosts of Laurel Cottage should include the builder of the original house, Joseph Woodbridge, who constructed it in 1740. Woodbridge, brother of schoolmaster Timothy Woodbridge, was the head of one of the four families invited to settle in Stockbridge to assist the missionary Rev. John Sergeant and Timothy Woodbridge by providing an example of Christian living for the Stockbridge Mohicans. Joseph, with his family, came to Stockbridge in 1739.

A who’s who of 19th century American authors rented or visited Laurel Cottage including Harriet Beecher Stowe, Herman Melville, Nathaniel Hawthorne and the English poet Matthew Arnold. St. Paul’s Church was organized there in 1834. By 1841 David D. Field Jr. had acquired the house, which Field’s daughter Lady Musgrave later inherited. She, in turn, sold the property to her cousin Charles A. Bidwell for one dollar and other valuable considerations, which turned out to be the shipping of some of Laurel Cottage’s furniture to England.

Laurel Cottage, minus the Victorian gothic projections off front and back, provided an excellent example of Queen Anne, late Stuart or Baroque architecture, a style that is best viewed by conjuring up an image of the current Mission House on Main Street, which itself was likely remodeled from a saltbox by Dr. Erastus Sergeant in the 1760s. During the razing of Laurel Cottage, evidence was found indicating the original structure had been built in 1740.

John Sergeant- Jonathan Edwards house which was at 23 Main Street.

The John Sergeant-Jonathan Edwards house rested at what is now 23 Main St., built c. 1737 for Rev. John Sergeant, missionary to the Stockbridge Indians. Based on dendrochronology, it is believed that Sergeant constructed the so-called Mission House, his second house, on Prospect Hill around 1743, although some histories place it as late as 1747. As a result of land surveys done during the creation of the 1750 Indian Proprietorship, two Stockbridge Mohicans – Jonas Etowaukaum and James Chanequin, sons of Aaron Umpachenee aka Sonkenewenaukheek – acquired the Main Street house and barn with 8 acres. They sold the property to the Rev. Jonathan Edwards in October of 1751.

Later occupiers included Asa Bement, Jahleel Woodbridge, Judge Theodore Sedgwick and General Silas Pepoon. The house and property today are more commonly remembered as having housed the Edwards Place School from 1855 to 1874, which attracted a number of well-known and near-famous either attending or supporting the school. For a time it was a boarding house before being acquired by John Cadwell from Ferdinand Hoffman in 1900. Cadwell had the house razed and had a “cottage” built further back from the road, which was later purchased by Austen Fox Riggs and called the Foundation Inn.

John Sergeant- Jonathan Edwards house which was at 23 Main Street.

It is not without some irony that the town of Stockbridge, which harbors such an incredible history peopled with the famous and near-famous – one that is matched by few towns of its size in New England – has failed on so many occasions to preserve the symbols of that history. The home of Rev. John Sergeant and Rev. Jonathan Edwards and Laurel Cottage, arguably two of the most historically important houses in Stockbridge, were victims of the wrecking ball. While a sundial memorializes the Sergeant-Edwards house, the two tennis courts on Bidwell Park hold no memories of Laurel Cottage. Those symbols of the past were a part of the historical fabric of the town, which provided insight into the town’s personality and character and, possibly more importantly, they would now help to give roots to an ever increasingly transient population that now call Stockbridge home.

In 1990, CATS magazine writer Phil Maggitti penned a tongue-in-cheek article about Stockbridge’s Cat and Dog Fountain, quoting from a 1980 Springfield Republican newspaper article that read, “A 128-year-old landmark stone statue of a cat hissing at a dog, meant to symbolize ‘progress versus preservation,’ was taken out of storage and set back on the corner of Main Street and Route 7 last week.” When asked which animal represented progress and which animal represented preservation, well-known cat lover Mary V. Flynn replied, “Why isn’t preservation progress?”

Hopefully, the fate of the Fitzpatrick Park with the Cat and Dog Fountain will be a balance of preservation and progress after much thoughtful and healthy debate.

Nov 07

Guns Do Not Stop Crimes

Vigilante Justice

I’ve abbreviated the more awkward title of a Scientific American (SciAm) article that, in full, reads More Guns Do Not Stop More Crimes, Evidence Shows. It appears to me that the full article is publicly available, not behind a paywall, which would be a praiseworthy public service, although I’m a SciAm subscriber so I can’t tell for sure.

When I recently read the hardcopy version, I skimmed through it quite rapidly, because the article conforms to my beliefs, so I didn’t really need any reinforcement.

Then came yet another mass shooting (this one in Texas, though it’s hard to keep up with them these days), and the resulting press coverage. As usual, when the shooter is a white male, “mental illness” was cited by many as the “cause” of the mayhem.

What really bothered me, though, about this incident, was the characterization of a couple of local men who pulled out their guns and wounded the shooter, then engaged in a high-speed car chase that ended in his death. These vigilantes were almost universally called “heroes” by the press. This made me shudder. As far as I can tell, these two men acted outside the law and caused the death of a man. Has it come to this, that private citizens can take the law into their own hands and conduct what amounts to an extrajudicial execution, and be praised for it?

In any case, the publicity surrounding this latest gun rampage made me turn back to the recently-read article for confirmation that this sort of behavior should not be held up as the standard we wish to achieve.

Guns Don’t Make Us Safe

The majority of people who buy guns do so for self-defense.

In a June 2017 study, researchers surveyed American gun owners about why they owned handguns, reporting that 88 percent bought them for self-defense; many felt they were likely to become targets of violent crime at some point.

In a recent year (2015), 36,000 lives in the US were lost to guns. This number is staggering, and exceeds the number of deaths attributable to a wide range of other causes, including automobile accidents. Yet, the number also indicates that only 1 in about 10,000 Americans is killed by a gun in a given year. And the majority of these deaths are suicides.

Numerous surveys and studies cited in this article conclude that households with guns are much more likely to experience gun violence than households without guns. And the use of guns for self-defense is relatively trivial (1 to 22) compared with accidental shootings, criminal assaults, and suicide attempts.

There are plenty of such statistics and conclusions in the article, if you need facts to counter some of the myths we commonly hear. The author’s final observation centers around the role of guns as arbiters of passions.

People, all of us, lead complicated lives, misinterpret situations, get angry, make mistakes. And when a mistake involves pulling a trigger, the damage can’t be undone… life is not target practice.

Oct 09

“Schizophrenia’s Unyielding Mysteries”

Schizophrenia’s Unyielding Mysteries” is the title of an article published in the May 2107 issue of Scientific American magazine. Quotations in this blog post are from that article unless otherwise specified.

Schizophrenia and Autism: Similarities and Differences

I’m interested in schizophrenia because it is so closely associated with autism. At one time, autism was labeled “childhood schizophrenia” because {1} autism was (mistakenly) thought to appear only in children, and {2} it was generally held (mostly correctly) that schizophrenia appeared only during adolescence or later in life. The general view these days is that the two are different neurological conditions that share many outward signs (at least in the early stages of schizophrenia), and in some individuals may overlap (i.e. both may be present).

Until the 1970s, many clinicians used ‘autism’ and ‘childhood-onset schizophrenia’ interchangeably. Today these conditions are recognized as separate, but there are similarities. For instance, the social difficulties present in autism can resemble the social withdrawal seen in schizophrenia.

[from an online article “Do Schizophrenia and Autism Share the Same Root?“]

Current terminology identifies a condition (completely distinct from autism) known as childhood schizophrenia, said to be “an uncommon but severe mental disorder in which children interpret reality abnormally.”

Hans Asperger was aware of the potential confusion, and took care to distinguish between autism and schizophrenia, pointing out that autism is a stable personality type, whereas schizophrenia is a degenerative condition. Leo Kanner, from what I can gather, did not share this view, believing that autism in children was, in fact, the precursor of schizophrenia. Current thinking supports Asperger’s viewpoint.

Both Kanner and Asperger referred to Eugen Bleuler’s concept of autism with the former considering infantile autism as a form of early schizophrenia and the latter as a form of psychopathic personality. Interestingly, Bleuler considered autism not only as a core symptom of schizophrenia but also as a dimension spanning across a wide range of non-schizophrenic conditions including superstition and pseudoscience. Similarly, Asperger seemed to suggest a spectrum perspective while pointing out that the capacity to withdraw into an inner world of one’s own special interests is available in a greater or lesser measure to all human beings. Moreover, he emphasized that this ability has to be present to a marked extent in those who are creative artists or scientists.

[taken from the article “From Asperger’s Autistischen Psychopathen to DSM-5 Autism Spectrum Disorder and Beyond: A Subthreshold Autism Spectrum Model” — this article also points out the problems of overlapping diagnostic criteria, among other key observations]

The prevalence of autism is generally given these days at around 2% of the population, although some studies have estimated it to be as high as 4%. I have seen numbers for schizophrenia at around 1%. I suspect all of these estimates are on the low side, because of increasing awareness of and the broadening of diagnostic criteria, particularly with regard to autism.

Genetic or Environmental?

The SciAm article’s subtitle begins “Gene studies were supposed to reveal the disorder’s root. That didn’t happen.” The same thing could have been written about autism. Millions of research dollars have been spent in recent years looking for “autism genes” — in the same manner, researchers hoped to find simple explanations for schizophrenia as well as for many other so-called “disorders.” Neurology, it turns out, is a lot more complicated than that, and the chimera refused to be found.

Since the advent of large-scale genetic studies just more than a decade ago … studies have yet to deliver [new insights] for schizophrenia, as well as depression and obsessive-compulsive and bipolar [behaviors].

Similarly, searches for neurological characterizations of sex/gender differences have found that people are better described as having a “mosaic” of characteristics rather than lying on a “spectrum” (continuum) of them. In other words, there is no simple on/off switch that makes a person autistic or female or schizophrenic or any number of other categorizations.

A big part of the problem here is that there are no objective tests that will identify the label being studied. If there were commonly-accepted brain scans, say, or blood tests or DNA markers that could identify autism or schizophrenia, we would be using them as diagnostic tools. Instead, we find ourselves using subjective diagnoses to see if we can find associated biomarkers.

In the US, clinicians rely on the APA’s DSM; elsewhere they often use the WHO’s ICD.

In the criteria set out in both volumes, patients can have markedly different symptoms, … and still be diagnosed with a case of schizophrenia.

In any DNA study, a control group is compared with another group of people who have been identified with the condition for which the study is trying to find commonalities. Yet, if that study group is itself heterogeneous, united only by a common (and possibly flawed) set of diagnoses, it is not clear what will (or can) be learned about their common biology.

Another issue that is raised in this article is that of environmental influences. Although schizophrenia (like autism and many other similar conditions) are commonly thought to be highly “heritable” it is clear that lineage alone is not a reliable predictor, as shown by twin studies and other family comparisons.

In the early days of DNA decoding (i.e. more than 10 years ago), almost exclusive attention was given to the protein-coding portion of the human genome. The other 99% of genes were dubbed “junk DNA” — a characterization which struck me as ludicrous, since the logic of evolution would not tolerate Mother Nature passing along a bunch of energy-absorbing material that had no function. It is now understood that this “junk” contains (among other things) the instructions needed for when and where to build which kinds of proteins.

Very little is understood about what triggers the body to build the variants it chooses from among the enormous set of possibilities. Even identical twins, who, by definition, share nearly identical DNA, can develop very differently.

… when one member of a pair of identical twins is diagnosed with schizophrenia, the other twin is affected … only about half of the time…

Why is this? The jury is still out, of course, and we don’t know how much variability to attribute to external environmental influences versus random genetic variation. In any case, it appears (as with autism) that it will be impossible to find a direct link between a person’s genetic inheritance and the chances of developing the condition.

Are Interventions Possible?

What implication does all of this have for potential therapies? The grand hope of early DNA studies was that a small number of genes (perhaps even one) could be identified as “causing” schizophrenia. This would open up the possibility of developing drugs or other biological treatments that could alter the condition. Although some scientists continue this search, it is obvious that potential results are a long way off, and the current state of our understanding does not provide the key to developing such interventions.

A number of recent clinical trials, meanwhile, suggest that psychosocial therapies, especially CBT [cognitive-behavioral therapy] can help lessen both symptoms and suffering in schizophrenia patients.

I don’t know enough about schizophrenia to know whether schizophrenics “suffer” from their condition. That word is all too often used in connection with autism and other disabilities. In many cases, those of us who are disabled suffer not from our disability but from the mistreatment and misunderstanding that we receive from the world at large.

Parallels With Autism

The similarities will be quite obvious to those who have been following the course of autism research over the past few years. Far too much attention and money have been spent on genetic research, and far too little on alternatives. Interventions such as CBT and life-skills coaching have been proven to be effective, but precious little effort has gone into investigating which of these (or other) techniques are most useful, and how they are most effectively employed.

I’m a big believer in basic research. In fact, I’ve participated in many brain studies and have donated my DNA for analysis. I hope that research into genetics, as well as new brain imaging and other techniques, will result in a better understanding of what are the essential differences between the autistic brain and the neurotypical brain.

Yet, based on personal experience, I know that the most effective therapies are those that involve behavior modification. These include CBT, talk therapies, meditation and other mindfulness techniques, support groups, life-coaching, and many other variations. We know how to do these things; we need to learn how to do them better.

For those of us who are autistic, a greater understanding of autism will help smooth our path. Self-knowledge can lead us to be more comfortable in our differences, and also to a better understanding of how to communicate with those who don’t inhabit our dimension. A wider public understanding will, we can hope, lead to more acceptance.

Being autistic is different. Not better. Not Worse. Different. Understanding and Acceptance of this difference by all will help us unleash our potential. Diversity is a good thing. The world will be a better place.

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