I promised colleagues in the UK that I would write about this a couple of months ago. Sorry it has taken so long.
When Autism Speaks launched the Autism Every Day video some people loved it. Some, like me, hated it and were glad to sign the petition launched by Autism Hub founder, Kevin Leitch. A lot of parents on email lists in the UKwondered what all the fuss was about.
- Aren’t we all supposed to be on the same side?
- We want services for our children that meet their needs.
- We want family support – respite for us and help for siblings.
- We want financial support without having to grapple with a benefits system that does not understand autism.
- We want acceptance and understanding for our children, of course.
- But if they weren’t autistic we wouldn’t have a problem. So what is wrong with wanting a cure?
- What is wrong with telling the world how bad things can be, if that gets us some help and attention?
So, what, in my opinion, is wrong with the video?
It is dishonest
The parents in the video have good support systems in place. They included the daughter of Bob Wright, NBC Chief executive and founder of Autism Speaks. They employ therapists who come into the home and work with their children. Some like Alison Tepper Singer, a vice president of Autism Speaks are high flying professionals. But none of this is apparent in the film because, according to an Altnet article, cited by Ballastexistenz
Thierry told her subjects not to do their hair, vacuum or bring in the therapists. She showed up with her crew at their homes sight unseen and kept the cameras rolling as a mom literally wrestled with her son to get him to brush his teeth, as a 9-year-old had a public meltdown, as a 5-year-old had his diaper changed. And, as moms revealed dark and uncomfortable truths about living with autism. The result is a window into an exhausting world of interminable work.
The author of Ballastexistenz, herself autistic, quite rightly points out that,
This was, as expected, not really a “slice of everyday life” from these parents’ lives, but a deliberately engineered take on the worst they could make things look. Why aren’t more people complaining?
She goes on to wonder about the effect on autistic children who have their daily routines disrupted so someone can make a film about how hard it is for their mothers.
It is manipulative
I remember one mother was interviewed standing by a road sign that said “Dead End.” The mothers (where are the fathers in this video?) talk as if their child’s life is over. They are mourning for all the things that will never happen. How do they know? Only today I was reading about an autistic 16 year old called Jenny Grasshof who did not speak until she was 5 and has just finished her GCSE exams.
The doctors said I wouldn’t be able to speak, read or write or do GCSEs. But 12 years on and I’ve proved them wrong.
It is insensitive
These parents talk about their children as if they were not there. But autistic children do listen. Wendy Lawson told the Times how her
earliest memories include hearing a professional tell her mother: “Your child is intellectually subnormal.”
As a toddler Lawson was too young to understand the meaning of the diagnosis. But, sensing its importance, she tucked it away inside. Throughout childhood, whenever she heard the Beatles’ Yellow Submarine, the word “subnormal” came to mind. “I thought ‘Maybe I’m like a submarine. Perhaps I live a sunken life’.”
So what was Alison Tepper Singer’s daughter Jody to make of it when she was in the same room as her mother, who, speaking to camera, confessed to feeling like killing herself and her daughter. And what stopped her? She remembered Lauren, the normal daughter who would be left behind!
It is selfish
Throughout the video I saw kids trying to relate to their parents and being ignored. Jody asks her mum if she is crying. Mum pushes her away. In fact she ignores her daughter’s attempts at interaction all through the video. Then at the end she makes Jody say, “I love you, Mommy.” Another girl is playing up because her mum wants her to go on a swing and she does not want to. They talk about their wishes but do not respect their children’s wishes. One mum says that her son is trying to stay in his world and she is trying to pull him out.
I have just finished reading Daniel Tammet’s autobiography, Born on a Blue Day. His parents respected his world and did not try to force him to conform. Of course nobody told them he was autistic. They just knew he was different and accepted the difference.
Living with autism can be hard
…for all concerned. And I can understand how parents would welcome seeing problems they identify with portrayed in the media. But this was a video with a purpose and a message. The aim was too raise money from corporate sponsors. Then it was aired on national TV and copies sent to US politicians to get them to support the Combating Autism Act. It is through the Senate and now needs to get through the House of Representatives. The act seems like a good idea
I know that many of us in the UK would welcome a package like this.
The Combating Autism Act as passed by the full Senate authorizes over five years about $920 million in appropriations for autism research and services, consisting of
- $ 405 million for discretionary research, collection and storage of data, and a strategic plan for autism research.
- $ 185 million for Autism Centers of Excellence
- $ 45 million for Centers of Excellence in Environmental Health and Autism
- $ 75 million for Centers of Excellence in Autism Spectrum Disorder Epidemiology. ($15 million for fiscal year 2007, plus such sums as may be necessary for each of fiscal years 2008-2011, which we can assume will be no less than $15 million per year.)
- $ 210 million for autism education, early detection, and intervention, including $ 45 million specifically authorized for interventions.
- Such sums as may be necessary for the Interagency Autism Coordinating Committee.
Even so I wonder at the priorities with less than a quarter of the funds devoted to education and intervention and most of the money going on research. Which brings me to …
And the message from the video seemed to me to be that living with an autistic child is so unremittingly awful that something has to be done. Some of those in the video referred to doctors’ appointments, therapies and interventions costing tens of thousands of dollars a year. But the parents seemed not to expect them to work. They talk of a lifetime of battling with autism and expect their children to still be autistic when they, the parents are dead.
Autism is characterized as a barrier to be overcome. But they do not hold out much hope for their own children. They are trying every therapy under the sun but the big picture is about research that will lead to prevention and cure.
For me the video is not about autism as such. It is about a particular psychological response to autism. There is an ideology around autism that helps to shape that response. In opposing the video I am not denying the experiences of parents. I shared many of those experiences when my son was growing up. I am not denying the lack of services or support. I am not denying the lack of understanding outside the autism community. I am not denying that autism itself can be the source of immense difficulties.
I am concerned to deny the ideology that demonizes autism and distorts the facts in order to justify itself. I hope to return to this topic sooner rather than later. Meanwhile, I offer my response to Peter Bell of Cure Autism Now! as a taster.
Regular readers may remember an earlier post of mine about Action For Autism in India (AFA) called Put Children First. I praised their positive attitude to autism and their fantastic achievements on a limited budget. I compared this with the mercury militia in the USA, particularly JB Handley of Generation Rescue who believes all autism is caused by mercury poisoning and spent more on advertizing campaigns than the entire cost of establishing the National Autism Centre in Delhi.
Then I read about an Indian mother on an internet list who was doing Hyperbaric Oxygen Therapy on her son because he might be at risk of developing autism. The son is 10 months old! So I wrote to AFA to warn them that quackery had reached their shores.
[Edit: I have deleted excerpts from an email that I quoted in error. I stand by my opinion that anyone promoting HBOT or chelation as a treatment for autism is promoting quackery. Action for Autism (India) have no wish to be drawn into this controversy. They are concentrating instead on the work that is summarized in Merry Barua's contribution to the AWARES Conference.]
The shame of it is that the message parents are getting from the affluent west is that money buys a cure. So they pay for expensive “therapies” like HBOT and chelation while AFA struggles to find the money for its education programme, which is much cheaper and, more to the point, actually works.
The good news is that the first national autism centre in India has been established by AFA. It will be inaugurated by Mrs Sonia Gandhi on September 8. But it is still not paid for. You can help by giving money, or visit their wishlist. They also need books about autism so if we all donate one from our shelves that will help to build up their library. And if you are not in a position to give anything I am sure that Merry would welcome messages of encouragement and support.
Action For Autism (AFA)
Sector 5 Jasola Vihar, Behind Sai Niketan New Delhi 110025
Tel: 91 11 65347422, 91 11 32964730
AFA’s Vision is a society that views the interdependence of people of every ability as valuable and enriching and seeks to provide equal opportunities to all
This article by Peter Bell, the President and CEO of Cure Autism Now, divides autism history into 3 ages.He calls the first age (1940s to 1960s) the “Age of Denial.” I have no argument with him when he writes:
Tragically, the idea that autism was caused by so-called “refrigerator mothers” who raised their children in a nonstimulating environment was pervasive during this period and produced disastrous misconceptions that still linger today.
But I do take issue with his description of the second age, “The Age of Defeat,” from the 1960s to the 1980s.
Once the medical community determined that autism has a biologic origin, the next 30 years were characterized by defeat. Parents were told that nothing could be done to improve the quality of life for their children. Autism was considered a lifelong disorder that couldn’t be treated and eventually required some form of institutionalization. Few scientists were involved in autism research, and most of the research was of marginal quality. Families affected by autism had almost no support and little recourse against the disorder.
It is especially unfortunate that Peter Bell should write this in the same month that the Autism community lost Dr. Eric Schopler. Dr Schopler was a major contributor to the demise of the “refrigerator mother” theory and one of the first to establish that autism is a treatable, neurological disorder.
Note that word, “treatable.” The result of Dr Schopler’s efforts was Division TEACCH, established in 1971 at the University of North Carolina and now providing statewide services to autistic people and their families. At the same time Dr Ivor Lovaas was developing the techniques of applied bhavioural analysis (ABA) for use with severely autistic children. In the UK the first school for autistic children, the Sybil Elgar School, opened in 1965.
Despite the differences in approach, all three initiatives contradict Peter Bell’s claim that Parents were told that nothing could be done to improve the quality of life for their children. It may be that the consultant paediatricians who knew very little of autism gave negative messages to parents. But they did the same for all manner of developmental disorders. Parents of Downs children were routinely informed that their new born baby would be so severely retarded that institutional care was the only option.
This is a long standing problem. The people who have control of the diagnostic process often play no part in the educational and theraputic processes that do improve the quality of life for autistic people and their families. Their medical nostrums are ineffective. So they point out their own ineffectivenesswithout pointing parents towards alternatives that are effective.
Peter Bell seems to accept this point of view. Only a medical solution will do. Without a cure there is no possibility of improvement in quality of life. This could only be true if you accept the premise that autism is a disease that destroys quality of life. Then, only a cure will do. And if a cure is unattainable what if you are tempted to follow the example of Karen McCarron? Too often the murder of autistic children is presented as a mercy killing and we are expected to sympathize with the murderer because parenting an autistic child is presented as being so unremittingly awful.
And so we come to the third age of autism, “The Age of Hope” from the 1990s to the present day. Peter Bell mentions the improvement in outcomes for autistic people who benefit from early diagnosis he fails to develop this idea apart from stressing the importance of quickly getting diagnosed children into intensive behavioral treatment programs while simultaneously arguing that autism treatment and care remain marginally effective
Early diagnosis means that parents learn to uderstand their autistic child. They can develop an autism friendly environment in which their child feels valued and supported. They stop make unreal demands on their child to be normal and concentrate instead on ways to make their child happy. Autism acceptance and support for the concept of Neurodiversity do help to improve the quality of life for children and parents alike.
But Peter Bell does not mention any of these sources of hope. Instead he celebrates the rise in the prevalence of autism, not in the spirit of autism acceptance but because now so many more children are suffering the government will have to do something to cure autism in his child’s lifetime.
I have already argued that the growth in prevalence actually reflects a broadening of the diagnostic criteria together with growing awareness and diagnostic expertise amongst clinicians in my post on New Phase Autism
Peter Bell prefers to argue that hundreds of thousands of families are being devastated by autism because it suits his purpose to manipulate parental fears to exert political pressure, while tugging at the heart strings of corporate sponsors to generate the funds to achieve his stated aim of victory over autism.
I am reminded of another Peter Bell, a servant who stood behind his master’s chair.
It was his fancy to invite
Men of science, wit, and learning,
Who came to lend each other light;
He proudly thought that his gold’s might
Had set those spirits burning.
And men of learning, science, wit,
Considered him as you and I
Think of some rotten tree, and sit
Lounging and dining under it,
Exposed to the wide sky.
And all the while with loose fat smile,
The willing wretch sat winking there,
Believing ’twas his power that made
That jovial scene–and that all paid
Homage to his unnoticed chair.
Though to be sure this place was Hell;
He was the Devil–and all they–
What though the claret circled well,
And wit, like ocean, rose and fell?–
Were damned eternally.
Extract from Peter Bell the Third by Percy Bysshe Shelley.
In “Autism, Brain, and Environment” Richard Lathe argues the case for a real increase in what he describes as “new phase autism” and concludes that, “The rising prevalence of ASD (new phase autism) may be ascribed to environmental toxicity, notably including heavy metals in combination with organic endocrine disruptors and other chemical toxins.” (p210)Does the rise in prevalence represent a real rise in numbers or can it be explained by factors like improved awareness and changes to the diagnostic criteria? This question is addressed in chapter four of the book, to which I now turn.
Any discussion of the epidemiology of autism has to start with Lotter. Yet Lathe seems unaware of his work when he writes, “Over the 1950s to 1970s there were no systematic surveys of the prevalence of ASD.” (p48) This is a surprising omission as Lotter’s is a landmark study. (Lotter 1966) There was an initial screening of 77,800 children aged between 8 and 10 in the county of Middlesex. All those identified as possibly autistic were given psychological tests and their teachers and parents were interviewed.
The resulting prevalence of 4.5 in 10,000 proved remarkably robust. Beginning with Lotter, Wing(1993) compared 16 epidemiological studies carried out between 1966 and 1991. The four using Kanner’s criteria all returned rates between 4.3 and 5.0 per 10,000. Rutter’s criteria and DSM-III are based on Kanner’s criteria as operationalized by Lotter. Two studies that used Rutter’s criteria gave figures of 5.6 and 10.8 respectively. Those using DSM-III are more interesting. The two American and two European studies gave rates of 4.0, 3.3, 4.0 and 7.5. The three Japanese studies that used DSM-III all reported much higher rates: 15.5, 13.8 and 13.0. In two of these routine developmental checks in early childhood were used to flag up potentially autistic children, suggesting a more effective method of initial ascertainment or screening can have as profound an impact on the outcome of epidemiological studies as the diagnostic criteria that are used.
Leaving aside these Japanese studies we have a relatively stable picture in which autism, narrowly defined, occurs within a prevalence range of 3.3 to 7.5 in 10,000 in nine studies carried out between 1966 and 1989. The odd one out is the study that found 10.8 per 10,000 using Rutter’s criteria. This is the only study which relied exclusively on schedules completed by psychologists and psychiatrists who had clinical care of the children they had identified during the initial screening as having “infantile psychosis.” In all other studies the researchers saw and examined the children themselves.
Wing’s review includes three other studies. Two used the DSM-III-R and one used its own criteria. This was a Japanese study (Ishi and Takahashi 1983) and the English summary was not very informative about how its criteria were applied. But it did provide the highest prevalence rate of all the studies under review; 16 per 10,000 from an initial population of 35,000 6 to 12 year olds in the city of Toyota.
The two studies that used DSM-III-R both found increased prevalence. Bryson et al (1988) reported a prevalence of 10.1 in 10,000 in a population of 20,800 6 to 14 year olds in Nova Scotia. Gillberg et al (1991) reported a prevalence of 11.5 in 10,000 in a population of 40,700 4 to 13 year olds in Göteborg.
So up to and including 1991 Wing found 16 studies that satisfied her epidemiological criteria: defined populations with an initial screening procedure and systematic follow up of all potential cases. Half of these studies found rates of around 5 in 10,000 or less. The other half ranged from 7 to 16 in 10,000. Nevertheless, Lathe asserts that, “Until the 1990s ASD was diagnosed at no more than ~5 cases per 10,000.” (p50)
Lathe argues that changes in the diagnostic criteria are not a factor in explaining the rise in prevalence.
“It appears unlikely that the more recent diagnostic methods encompass a wider range of children, because all include the key features of autistic disorders with specific recognition of speech delay, social interaction impairment, eye gaze avoidance, and resistance to change.” (p51) He acknowledges that it has been argued “that DSM-III-R broadened the diagnostic concept of autism.” But “the recommendations of III-R are largely reiterated in DSM-IV, and substantially parallel ICD-10.” (p49)
The reference is to Volkmar et al. (1992) who found that, “Relative to either clinicians, DSM-III, or ICD-10 the DSM-III-R system overdiagnosed the presence of autism.” Hertzig et al (1990) report that, “DSM-III-R criteria have specifically broadened the concept of autism to include children who, although socially impaired, are not unresponsive to others.” These appear to contradict Lathe’s assertion that changes in diagnostic criteria are unimportant.
For the real story of what has happened to the diagnostic criteria we have to return to the Camberwell study. (Wing and Gould 1979) As well as coming close to Lotter’s figure of 4.5 in 10,000 for children with Kanner’s autism, Wing and Gould also found a significant number of children who, while not fulfilling Lotter’s strict diagnostic criteria, did share in the now familiar Triad of Impairments and were deemed to be on the autistic spectrum. Including these children raised the prevalence to 20 in 10,000. (It is worth noting that at the height of the “autism epidemic” in California figures of 30 in 10,000 for children of all abilities were reported. (CDDS 2003) Wing and Gould’s reported rate of 20 in 10,000 only included children with significant cognitive impairments.)
This problem of hyperspecificity was the issue that DSM-III-R was supposed to address. There were children who were plainly autistic to experienced clinicians but who did not meet the published criteria.
“The revisions introduced in DSM-III-R in 1987 were motivated by this low sensitivity [but] it soon became apparent that although sensitivity was now very high, specificity was quite low.” (Szatmari no date)
DSM-IV and ICD-10 are different. For the first time the World Health Organization and the American Psychiatric Association have tried to harmonize their diagnostic criteria. Both seek to reflect Wing’s triad of impairments while “improving its (DSM-III-R) specificity and reintroducing several non-autistic PDD sub-types.” (Szatmari no date)
This tension between the need for sensitivity and the desire for specificity has been a constant feature in the development of our understanding of autism. And there are still problems with the criteria. Asperger Syndrome is a particular problem.
Hippler and Klicpera (2003) examined the records of 74 children diagnosed with autistic psychopathy (AP) by Asperger and his team. Sixty eight percent of these met the ICD-10 criteria for Asperger syndrome. Twenty five percent met ICD-10 criteria for autism. The authors conclude that, “ICD-10 and DSM-IV criteria for AS do not quite capture the individuals described by Asperger and his team. They appear to differentiate AS from autism solely based on the onset criteria, regardless of the patient’s social impairment later in life.”
Dr Judith Gould in a conference handout dated 16/11/02, argues that nosological problems arise when we try to define categories within PDD too precisely. Autism is best understood as a spectrum disorder.
“EVIDENCE FOR A SPECTRUM
One person can show different features in different environments
One person can show different features at different ages
Members of the same family can show different features
Identical twins or triplets can show different features
The same basic principles underlie methods of education and care for the whole spectrum
DIMENSIONS VERSUS CATEGORIES
In clinical practice, it is extremely difficult to define the boundaries between different diagnostic categories, whatever the criteria used. The clinical picture found in those with autistic spectrum disorders fit better with the concept of multiple dimensions than with the concept of separate, definable categories. Individual needs are more accurately assessed from the profile of levels on different dimensions than from assigning a categorical diagnosis.”
So far we have mainly been concerned with those decades prior to 1990. Lathe regards the period since then as “the most critical period under scrutiny.” (p49) It is certainly the period that has seen the largest increase in reported prevalence.
Lotter found that 75% of children meeting his criteria had some degree of mental retardation. Wing (1993) makes the important point that when the children under consideration have mild to moderate mental retardation we see the closest concordance with Kanner’s criteria. More profoundly retarded individuals would be unable to manage the object oriented elaborate routines specified by Kanner. Those with normal or above average intelligence tend to be less object oriented and more verbal and social, especially with increasing age.
Therefore we should expect the shift away from the highly specific diagnostic criteria in DSM-III to the more sensitive criteria in DSM-III-R that catered for all children with Wing’s triad of impairments to lead to an increase in prevalence. The inclusion of Asperger’s Syndrome in ICD-10 and DSM-IV would further increase the numbers. We should also expect the proportion of those with mild to moderate mental retardation to fall even if their absolute numbers remained the same.
Basing their figures on Wing and Gould (1979) and Ehlers and Gillberg (1992) the National Autistic Society estimated total prevalence of autistic spectrum disorders as 20 in 10,000 for those with an IQ < 70 and 71 in 10,000 for those with an IQ > 70. This gives a total prevalence of 91 in 10,000. Fombonne (1997) dismissed these figures and suggested that the best available epidemiological knowledge suggested rates of 5 in 10,000 for childhood autism and 10 in 10,000 for other pervasive developmental disorders. Four years later Fombonne and Chakrabarti (2001) published the result of an epidemiological study in Staffordshire that found rates of 16.8 in 10,000 for autistic disorder and 46.8 in 10,000 for other Pervasive Developmental Disorders. A follow up study by the same authors (2005) using exactly the same methodology with a matched cohort in Staffordshire found broadly similar results. They also found that the 75% mental retardation rate found by Lotter was reversed with only 25.8% showing some degree of mental retardation.
This is consistent with a broadening of the diagnostic criteria to include children who do not display the classic autistic aloofness and are more outgoing and interested in people but are still recognizably autistic.
Lathe highly regards the overview of prevalence data by Williams et al. (2006) This includes all of the studies discussed by Wing and continues up to studies completed in 2004. It also includes three studies that Wing rejected on grounds of methodology. All gave low prevalence rates consistent with the narrow diagnostic criteria they used. Lathe remains convinced that changing diagnostic criteria cannot account for an estimated tenfold increase in prevalence since the early 1990s. Leaning heavily upon Williams et al. (2006) Lathe thinks that there has been a change in the environmental contribution to autism and this has increased over time.
Williams et al identify three factors which Lathe uses to support his case.
Urban versus rural residence.
Lathe takes this as evidence for a strong environmental influence on autism. There are more heavy metals and other pollutants in the cities. But there are also more clinicians, more specialist diagnostic units and easier access to clients and to centralized records used for screening. Williams et al mention all these factors. They do not mention environmental pollution. That is because their paper is not designed to examine the causes of autism. Its aim was to “quantitatively examine the influence of study methodology and population characteristics on prevalence estimates of autistic spectrum disorders.”
Age of Children
Rates were higher when younger children were examined. Lathe takes this to mean that autism is growing at a faster rate among young children. Williams et al suggest that, “Manifestations of autism may be more obvious in young children. Alternatively, some screening methods may be more sensitive for younger children.”
Lathe also cites administrative data from education that shows a preponderance of cases of autism among younger children as opposed to those in secondary education. This is to be expected. Howlin and Moore (1997) discuss the immense difficulties that parents faced then in obtaining a diagnosis. Typically parents faced a four year delay between expressing initial concerns and obtaining a diagnosis. These were highly motivated parents who were all members of the National Autistic Society. Many had to battle with health and education officials to obtain the necessary referrals. It is open to question how many other parents managed to stay the course.
When researching my book (Stanton 2000) difficulties in obtaining a diagnosis was the main bugbear reported by parents. The situation is improving. But the attention paid to child development in the early years suggests that younger rather than older children are the chief beneficiaries of this.
Lathe thinks that this is also evidence of an actual growth in autism over time because he does not believe that the latest diagnostic criteria are broader than before. Most commentators would not agree. Fombonne (2003) states that, “It is generally agreed that the definition of autism has broadened over the last decades, particularly at the less severe end of the spectrum.”
Fombonne also makes the point that variation in prevalence is often linked to methodology. “For example, in 4 US and 4 UK studies published recently, 14- and 6-fold variations in prevalence rates were found, respectively. Although these two sets of studies were conducted at the same time in similar age groups and in the same countries, the lack of consistency in estimates is striking and demonstrates how unique design features within each study can affect prevalence estimation. In both countries, studies relying on single administrative sources for identifying cases yielded low estimates, whereas investigations using proactive methods of case finding, that is, multiple sources of ascertainment and direct diagnostic procedures, yielded much higher rates.”
Williams et al. seem to support Fombonne rather than Lathe. The authors argue that, “The covariate most strongly associated with prevalence estimates for typical autism and all ASD was the diagnostic criteria used.” When commenting upon the higher estimates of prevalence arising from Japanese vis a vis US studies they note that, “All the Japanese studies used prospective diagnostic assessments and all but one drew on whole population rather than clinical samples.”
Lathe does look to other examples to support his claim that there has been a real increase in autism. There is an impressive graph showing a steady rise in prevalence between 1970 and 1990 followed by a massive rise following 1990. But the report from the CDDC also carries a “government health warning.”
“The information presented in this report is purely descriptive in nature and standing alone, should not be used to draw scientifically valid conclusions about the incidence or prevalence of ASD in California. The numbers of persons with ASD described in this report reflect point-in-time counts and do not constitute formal epidemiological measures of incidence or prevalence. The information contained in this report is limited by factors such as case finding, accuracy of diagnosis and the recording, on an individual basis, of a large array of information contained in the records of persons comprising California’s Developmental Services System. Finally, it is important to note that entry into the California Developmental Services System is voluntary. This may further alter the data presented herein relative to the actual population of persons with autism in California.”
This is a reminder that we are dealing with administrative data here, not epidemiological data. DDS data records numbers who are in receipt of services. Year on year rises record the net gain and show that more people are entering the system than leaving it. They do not necessarily indicate a growth in new cases. Of course year on year rises are consistent with an increase in the number of diagnoses. As I noted earlier most commentators believe that this is due to a broadening of the diagnostic criteria together with increased autism awareness and better ascertainment. Ironically, the autism epidemic hyped in the media has probably contributed to this process.
An earlier study of the California data by Byrd et al(2002) is cited by Lathe as evidence that growth in reported rates of autism in California could not be explained by a loosening of the criteria. They did this by taking two samples of children, one born between 1983 and 1985 and the other born between 1993 and 1995, and using the ADI-R interview with their parents to determine if both groups met the DSM-IV criteria. The children themselves were not tested.
There is an obvious flaw to this argument. If the newer criteria are more inclusive, of course children diagnosed with autism under more exclusive criteria will also meet the modern criteria. It would have made more sense to test the more recent cohort using DSM-III. The limitations of the Californian data and Byrd’s report are discussed more fully by Gernsbacher et al(2005) who also notes that Wing and Potter (2002) offer a similar example in which all the children from an earlier cohort who met Kanner’s criteria also met DSM-IV criteria. But only 33 to 45% of children more recently diagnosed using DSM-IV also met Kanner’s criteria. Nevertheless Lathe also cites a similar experiment in Minnesota applying DSM-IV criteria retrospectively to earlier generations to demonstrate a ten fold increase in autism.
Changing spectrum of impairments.
Lathe argues that data from the Byrd study suggest “that the pattern of presentation of the disorder has altered over the 1980s through 2000s, with autistic disorder becoming more prevalent with respect to other conditions.” (p55)
The main support for this is the drop in Asperger Syndrome from 15% to 2%. But this drop is based on parental reports of diagnosis in 261 subjects in the two samples taken from 1983-5 (n=100) and 1993-59 (n=161). None of the children were tested to confirm the parental reports. Lathe also refers to the growing cognitive abilities of autistic children in California. Again, this is consistent with a loosening of the criteria to admit more able children onto the spectrum. Lathe’s refusal to admit this possibility leads him to see a rising tide of autism where others, myself included, see a rising tide of recognition.
Evolution of twin concordance rates.
Traditionally, we find high rates of autism in identical twins and less high rates among non-identical twins. But rates are still high enough to confirm a significant genetic component. Lathe cites three studies, all of which are unpublished, to support his contention that environmental factors are impacting upon rates of autism by changing the concordance rates in twins.
The first thing to remember is that the numbers in these studies are very small. One unpublished study has 41 pairs of identical twins and 46 pairs of non-identical twins. In another study, there were only 32 identical pairs. The second thing is that in two of these studies researchers relied entirely on parental and/or practitioner reports. The third thing to remember is that these are unpublished reports. Until the rest of us can read these reports they cannot inform the debate.
Decline of a specific genetic contribution; Fragile X.
Lathe thinks that because the rate of Fragile X is constant a rise in prevalence will lead to a fall in the proportion of individuals with ASD who are Fragile X. I agree? I have already argued that an increase in prevalence does not necessarily mean an actual increase in autism. Fragile X, tuberous sclerosis, PKU have all been associated with ASD. They are also associated with mental retardation. If less restrictive diagnostic criteria are finding more cases without mental retardation it stands to reason that they will find less cases associated with Fragile X. Lathe takes this as proof of increased prevalence. But we all agree that prevalence has increased. This is not disputed. The argument revolves around whether or not the rise in prevalence represents an actual rise in cases of autism and is this rise caused by novel and potentially reversible environmental insults.
It is my contention that the evidence so far does not support Lathe’s theory of a change in the nature of autism, a new phase autism brought on by significant environmental impacts of a new and recent kind. Instead I favour the view that we have been witnessing a change in the nature of our understanding of autism.
That is not to deny the possibility that there has been an actual growth in the incidence of autism. We do not know because reliable epidemiological data comparable over time does not exist. Administrative data from school records is suggestive but as Shattuck(2006) has pointed out, this data cannot be used either to prove or disprove the theory that there has been real growth in autism. This does not stop such figures being used to fuel media scare stories as happened in Scotland recently. Autism may be growing. But there is nothing in the data to support a dramatic increase fuelled by toxins that only emerged at the beginning of the 1990s.
One feature of the closing decades of the twentieth century and the beginning of the new millennium has been an increasing awareness of and a willingness to embrace diversity as opposed to the old adherence to traditional values and social conformity. It may be that the rigidities of the past made life more predictable and easier to manage for autistic people. Now we live in interesting times that are of our making but are uncomfortable times for our autistic brethren. They and their difficulties are more apparent because of this. We owe it to them to strive to embrace their diversity and accommodate their difficulties. Perhaps the environmental influences on autism are not heavy metals. There are other toxins in society.
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