The Arbitrary Extension of the Autistic Spectrum
Over the last twenty years we have witnessed a semantic shift in the concepts of autism and the wider autistic spectrum. The former may assume three broad definitions:
- A mental condition devoid of a theory of mind with which to relate to other human beings. In this sense we all start life in an autistic state and gradually develop progressively more advanced theories of mind. Early attachment with one's primary care-giver and bonding with real-world friends clearly play a crucial role. However, alienation, severe depression and other traumatic events may cause individuals to regress to a more autistic state.
- A severe pervasive communication disorder affecting the early progress of key developmental milestones, in which an individual fails to empathise with or respond emotionally to other human beings as members of the same species or community. It is accompanied by a severe intellectual handicap in 70% to 80% of cases. This kind of classic Kanner's autism affects a very small minority of children. However, recently we have seen a rise in regressive autism, in which children develop normally for the first 24 to 48 months and then regress into an autistic state (as per definition 1). In some cases regression has been known to occur at even later stages, however, it is reasonable to conclude that such a deterioration in a person's emotional and social intelligence stems from an underlying neurobiological abnormality. Even if we include the latter group the percentage, according to statistics furnished by the National Autistic Society, of people with high-functioning or low-functioning autism does not exceed 0.2% of the UK population. This is admittedly higher than official autism rates in many other European countries, but individuals with such severe impairments would be classified as in some way learning disabled in all countries with advanced health and social services.
- A pervasive personality disorder affecting socialising patterns often accompanied by obsessive interest in a narrow range of circumscribed subjects, relative lack of empathy, relatively poor soft skills, tendency to work alone rather than as a team player, lack of expressiveness in one's body language, idiosyncratic mannerisms, depression, hypersensitivity to sensory inputs etc.. This spectrum usually includes Asperger's Syndrome and Semantic Pragmatic Disorder, but is often extended to include even vaguer labels such as ADHD, Tourettes, Social Anxiety Disorder and schizophrenia. We cannot ignore the conspicuous fact that numerous individuals have been diagnosed with two or more of these labels at different times in their lives. Unlike autistics as per definition 2 people in this category have all reached essential developmental milestones within the normal range. They are thinking, talking, emotionally responsive human beings whose behavioural traits blend into the mainstream. Indeed many question whether the behavioural traits associated with these labels should be considered in any way pathological, and thus worthy of treatment, at all.
As someone who has been diagnosed with AS myself, I know from personal experience that the psychological problems that lead affected individuals or their close relatives to seek diagnosis are very real. Many live very isolated lives coping with long-term unemployment and extreme social alienation. Any caring society should reach out to such vulnerable people. However, the growing autism and Asperger's support sector is unanimous in concluding that:
- People with personality disorders as per definition 3 belong to the newfangled autistic spectrum.
- The underlying cause of their problems is neurobiological, i.e. They have different brains.
These assertions are recycled in countless books, magazine articles, medical abstracts and Web sites, despite the fact hardly any of the 380,000 (according to NAS statistics) people diagnosed with AS have ever had a PET or fMRI scan. The evidence cited to support the theory that AS-individuals have a clearly identifiable brain structure different from that of so-called neurotypicals is at best fragmentary and inconsistent, but more important refers in most cases to genuine autistics (HFA or LFA). They also fail to explain how some individuals have recovered emotionally and socially from severe traumatic brain injuries or account for the latest research into the emerging field of neuroplasticity, which shows how the frontal cortex regularly rewires itself in response to environmental stimuli. Thus it should not surprise us if individuals with a given set of behavioural traits yield analogous activation patterns in the orbito-frontal cortex during an fMRI scan, as results for the same individual have been shown to vary in response to mood and recent personal experiences.
Heterogeneity of AS-diagnosed Individuals
Before we can generalise the behavioural or alleged neurological differences associated with Asperger's individuals, we need to ask whether they form a homogeneous group in any meaningful sense. Most affected individuals are diagnosed on the basis of clinical observation. I know of one specific instance in which an individual was diagnosed after a single one-hour session. Increasingly diagnosticians consider AS to be the high-end of the autistic spectrum, so a sizable number of individuals, who would previously be labelled as HFA or regressive autistics, are labelled AS because they can talk.
Misdiagnosis: The Case of Joe
As a community support worker in a project aiming to provide individuals with a learning disability with some work experience, I came into contact with a young man, who I will call Joe to respect his confidentiality. At the time I had recently been diagnosed with AS myself and was particularly keen to develop a rapport with Joe. His speech was limited and greatly simplified, he seemed relatively oblivious to conversations going on around him, his expressions of key social concepts were extremely simplified (e.g. “My dad builds bad houses” meant “my father is an architect whose work may have been criticised”). Admittedly he had islets of ability, notably in trains and aeroplanes, but at the age of 23 was for all intents and purposes illiterate and despite the best efforts of numerous special education teachers and social workers he had only very basic numeracy. He could, however, perform some tasks, such as working a badge-making machine, extremely well and had showed interest in sealife and dry-stone dyking. However, sometimes his support workers would mislead others by overstating his abilities, e.g. He had attended an electronics course at a local college and had learned to solder components onto a printed circuit board, but had no idea of the functions and relationships of the components. His masterpiece exhibited by an eager support worker was little more than a plastic board with a neat artistically arranged pattern of transistors and resistors. Joe required 24 hour support and showed no interest at all in socialising with or even remembering the names of colleagues. How could such a person be diagnosed with AS and placed in the same category as nerdish university professors or sufferers of social anxiety?
I later learned more of Joe's background. He had apparently regressed rapidly from the age of seven and had suffered repeated epileptic convulsions as a teenager. For many years he would not talk at all. I know nothing of his medical history, but it is to be assumed that he had been administered barbiturates and benzodiazepines with side effects known to induce severe retardation.
It is thus quite possible to select a group of AS-diagnosed individuals with severe emotional deficits for fMRI screening and then conclude, erroneously IMHO, that others with apparently less severe symptoms, conform to the same neurological pattern.
Two Very Different Phenomena
I believe we are faced with two very different phenomena, whose similarities are only apparent on the basis of cursory clinical observation.
- Neurobiological autism, i.e. Caused by a fundamental brain abnormality. It should be stressed that there is an enormous variation within this group and many genuine autistics are not only talented, but have progressed to write books and lead successful careers (Donna Williams and Temple Grandin come to mind). Also as the onset of autistic behaviour varies considerably there are likely to be many subgroups with different aetiologies, e.g. regressive or late onset autistics are less likely to have an inherent genetic defect.
- Psychological disturbance of culturally defined normal emotional and social development: This encompasses by far the largest group of people classified within the broad autistic spectrum. The associated idiosyncratic behavioural traits, labelled autistic, AS, ADHD etc.., result from a complex interaction with environmental, somatic and psychological influences.
Possible Causes of Psychological Asperger's
For want of a better term I will stick with the label Asperger's, a loose term for people exhibiting the behavioural traits outlined in DSM-IV. At this stage it should be noted that the Diagnostic and Statistical Manual is a publication of the American Psychiatric Association, but is a common reference in a number of other countries, notably the Anglo-Saxon World (UK, Ireland, Canada, Australia, New Zealand) and regions with close to the Anglo-Saxon model such as Scandinavia. AS entered the the DSM at the same time as ADHD and diagnosis only became common in the mid to late 1990s following considerable media exposure by various advocacy groups. Many psychologists have already questioned the validity of ADHD as a psychiatric label. Others have long challenged the very concept or neurobiological origins of schizophrenia or more recent constructs such as bipolar disorder. AS-diagnosed individuals cover a wide spectrum of behavioural traits that clearly overlap with those associated with other psychiatric labels.
It is important to distinguish somatic and minor neurological adaptation that may affect an individual's sensory perception or relative ability to perform complex tasks such as playing ball games, dancing or multitasking in an environment with conflicting sensory input on one hand, from fundamental neurological difference that completely inhibit a person's ability to form relationships, communicate or relate to other people in a characteristically human way. E.g. Many visually impaired people suffer forms of social alienation, but nobody would suggest that blindness in itself stops people from forming meaningful human relationships or causes clinical depression. The latter symptoms arise because normal social interaction is inhibited by a sensory impairment. Likewise a person who has suffered severe facial burns is expected to take time to adapt psychologically to people's duplicitous reactions to their disfigurement. As long as these differences are clearly identifiable and labelled as disabilities, other people can learn to compensate and often overcompensate.
- Dyspraxia:Many, but by no means all, AS-diagnosed people have various degrees of dyspraxia, namely a deficiency in hand-eye co-ordination, a slightly delayed reaction time or just plain clumsiness. This is likely to have a neurobiological basis. As a child I tried to join in football games, but simply kept missing the ball. At the time I put this down to a weak left eye, but obviously some people have better fine-motor co-ordination than others in the same way as some are more musically talented than others, but we'd only define people with a severe motor impairment as in any way disabled. Also only a minority of dyspraxics would meet the diagnostic criteria for AS. We may merely state that there is a relatively high correlation between dyspraxia and AS. Dyspraxia affects our ability to participate fully culturally important pursuits such as ball games and dancing, making us appear uncool and choose other more individual pursuits, isolating ourselves from a key part of mainstream social life and depriving us of opportunities to learn team-playing techniques so important in today's socially competitive society.
- Minor Disfigurements: Many AS-diagnosed people have minor aesthetic disfigurements, severe teenage acne, eating disorders etc.. IMHO AS-like behavioural traits often develop as a reaction to social rejection or an inferiority complex.
- Cultural Mismatch: A very large proportion of the AS-diagnosed individuals I have met are in some way culturally mismatched, i.e. come from a family background somehow out of tune with the prevailing culture in their neighbourhood or school. Of fifteen adults who regularly attend the Edinburgh group, at least two attended private schools and thus have atypical accents for their locale, three (including myself) moved to the area recently from elsewhere in the UK, one moved from Germany and was diagnosed here (and seems intent on converting some of us to his brand of Christianity), most of the rest come from middle class backgrounds. Indeed I'd say only 3 or 4 come from ordinary working class backgrounds at all, who incidentally tend to be the least vocal at meetings. IMHO AS-like behavioural traits tend to develop as a reaction to cultural alienation in the absence of a strong sense of community. This may explain why relatively few members of non-white ethnic minorities have been diagnosed with AS. I have come into a contact with a Hong-Kong born, ethnically Chinese, young man diagnosed with AS, but his cultural affiliation is most definitely Anglo-American.
- Modern Lifestyle: AS-like behaviour is only identifiable in regions that have adopted a high-consumption economic model in which most people are employed in the tertiary sector with a prolonged adolescence and a high percentage of young adults attending further education. In regions where most people are involved in the primary or secondary sectors (farming or extraction and crafts or production) the relative social handicaps associated with AS are neither apparent nor considered pathological. Some people are considered to have different characters with different relative strengths and weaknesses. We cannot ignore the psychological effects of radical cultural changes in the space of a few generations. Only a generation ago, the whole media universe (TV, video-games, computers, mobile phones etc.) played a relatively peripheral role in the development of imagination, creative play and social relationships. The diagnosis of a new series of personality disorders in children and adolescents has coincided with a significant rise in exposure to a virtual world of electronic media and a breakdown in traditional family life.
Often these factors coexist or become self-perpetuating, e.g. Someone with a very low sense of self-esteem as a result of a cultural mismatch or relatively mild form of dyspraxia may not care much about personal appearance and hygiene and is more likely to adopt a couch potato lifestyle, with resulting eating disorders, obesity, acne etc.., for fear of rejection in the real world. Among the many secondary traits associated with AS, an Edinburgh-based autism consultant stressed sleeping disorders, yet failed to mention that insomnia has huge cultural variables. It seems obvious that sleeping patterns would be disrupted by long-term unemployment and addiction to television, computers and video-games. Also conspicuously absent from her speech was the fact that a known side effect of the medication prescribed to sufferers of AS, chiefly Prozac, Effexor and Paxil, is insomnia. The same can be said of the steady gaze considered characteristic of AS.
The Psychiatric Establishment and the Learning Disability Agenda
First let us distinguish three concepts:
- Neurologically determined intellectual impairment: This is commonly known as a learning disability and replaces mental retardation and mental handicap. While there are certainly many borderline cases, and undoubtedly many of cases of regression, this infers a fundamental and irreversible cerebral abnormality and should not be confused with low personal achievement due to environmental and psychological factors.
- Severe psychopathic personality disorders: Whatever the causes, the behaviour of some individuals is clearly antisocial. We need to examine why there has been a concomitant relaxation of the criteria used for such disorders and a rise in the number of depressed or socially alienated people seeking some form of psychological help or referred by others to psychiatrists. Although definitions vary considerably, psychopaths are thankfully a relatively marginal phenomenon. Most people would only kill under extreme duress or after prolonged operant conditioning, e.g. army training.
- Psychological problems aka mental health problems . These affect us all to varying degrees at some time in our life.
First it is my opinion that the first category only applies to a very select group of individuals who need our help. Second the emergence of the autistic spectrum concept has enabled a considerable blurring of these categories both in the public mind and more disturbingly among psychologists. Most of the literature about Asperger's Syndrome emphasises that affected individuals lie in the normal to high IQ range. However, most people referred to the NHS psychologist who diagnosed me had some form of learning disability, i.e. an IQ < 70. This term means different things to different people, e.g. it may apply to dyslexics with above-average IQ's. It is commonly confused with learning difficulty, e.g. A child with a mild visual impairment has a learning difficulty because she might need to sit closer to the blackboard or need reading books with extra large print. Clearly the PR machine of the autism sector emphasises that AS means autism without a learning disability, but the psychiatric establishment thinks otherwise. It classifies AS as a form of social blindness that severely impairs an individual's ability to interact responsibly in a social environment. It thus follows that to protect an AS-diagnosed individual from the consequences of his own actions, he needs special help and support, often a euphemism for control.
Again the autism sector seldom mentions schizophrenia or bipolar disorders, while the psychiatric establishment, with whom the former collaborates very closely (with individuals moving from one sector to the other), considers schizophrenia either as part of the autistic spectrum (cf. Lorna Wing) or at least closely related. There have been a few high profile cases of young men diagnosed with AS who have committed heinous acts. In one recent case a teenager murdered the daughter of two of his parent's closest friends. In another a man murdered his wife because he suspected her of having an affair with a colleague. The inference is thus that AS individuals, though usually just a little eccentric, are particularly prone to psychopathic behaviour and thus need more help and support before they contemplate such acts. By failing to distinguish the vague concept of “people who some psychiatrist has labelled with AS” with the more psychologically valid concept of “people who manifest a clearly identifiable set of behavioural traits”, we are being lulled into accepting a huge expansion of the autism/AS sector and through the backdoor, of the psychiatric establishment. This latter aspect should be of particular concern to us in view of new legislation for compulsory screening for personality disorders and mental health problems in the United States.
Next we need to ask who this sector is really helping? As previously outlined, I know of two organisations in Edinburgh (Autism Initiatives and IntoWork) who have incredibly low staff/client ratios. IntoWork helps people on the spectrum find a job. Based on their performance so far (and I know many of their staff and clients), it would make more economic sense to use the funds allocated to this organisation to artificially create jobs for their clients. The autism sector keeps stressing the need for advice and information. I ask what use is incorrect, inconsistent and/or scientifically unproven information? What advice can a trained autism advisor give that many other socially aware volunteers could not give? In the end what each individual needs is a chance to meet new people, form friendships, complete education and get meaningful and adequately well-paid employment. Often the setting up of various “Asperger support groups” only ghettoises individuals who are already both vulnerable and isolated. All too often they are recruited to raise autism awareness (spread the message), thereby advancing the careers of their support workers.
Explaining the Enigma
The Asperger's enigma cannot be understood in isolation. If we believe that Aspies have radically different brain structures, then the psychiatric establishment may have a point. The real evidence on the ground I've seen so far shows clearly that the AS-diagnosed form such a heterogeneous group with such a wide variety of personalities and behavioural traits that any attempt to map their brains and identify neurological patterns would prove meaningless. Even a cursory look at available research reveals conspicuous inconsistencies with many themes common to the identification of other psychiatric labels or mental health problems, .e.g. It is extremely doubtful that relative serotonin levels could explain autism, yet leading autism experts such as Richard Howlin recycle such notions.
If over the next few years we witness a further proliferation of new personality disorders, I feel we should be extremely sceptical at the real agenda behind this movement. Also note that estimates for the incidence of AS, SPD, Tourettes, ADHD and Schizophrenia vary considerably. In some school catchment areas in the incidence of ADHD has already reached 1 in 5, in others it barely figures. Likewise some statistics suggest as many as 1 in 100 people have been diagnosed with AS or other related conditions, but many autism advisors suggest the figure is much higher. Again the same NHS autism co-ordinator, has publicly stated that as many as 10% of adults have AS. Where do they get these statistics from? Yes, a very high fraction of people share to varying degrees some of the traits outlined in DSM-IV, but what exactly does that prove if hardly a single trait is mandatory for diagnosis?
- Do all aspies freak out in the presence of bright lights and loud noises ?
- Apparently not I have met an aspie in Edinburgh who loves discos and noisy pubs and incidentally has no special interests to speak of, just a record of antisocial behaviour and joblessness.
- Are all aspies blind to subtle facial expressions?
- Again this varies a good deal, I'd say only relatively so and in some cases not at all?
- Are all aspies loners by choice?
- In my experience this is rarely the case, most actively seek friendships and become depressed precisely because of their social failings?
- Are all aspies unaware of social etiquette or other people's feelings?
- Only in so far that many are so depressed or alienated that they cannot identify with their peers, but given the chance most will soon develop empathy, especially for other like-labelled individuals.
- Are all aspies scared of travelling to new locations?
- Some are relatively stay-at-home types, but many I've met are intrepid travellers who would just like a companion.
- Are aspies anticonformist?
- Some are, but then some are positively conformist, often turning into faithful recruits to new causes, such as autism awareness.
- Why do so many apsies think they belong to the autistic spectrum?
- Because they have been taught so and failure to extend solidarity to a small minority of genuine autistics is simply politically incorrect. For many aspies autism simply defines their true selves. Some even talk of my autism as if it were a cherished attribute or possession. Some will celebrate autism as a positive trait and liken their struggle against discrimination to that of ethnic minorities. However, while we should all oppose discrimination against people with different personalities, the analogy with racism ends there. First people of black African descent form a clearly identifiable ethnic subset of the human species. Second no self-respecting black rights activist would campaign for "biologically inferior wogs" to be provided more help and support to overcome the natural superiority of the master race. They rightly challenge all claims of racial superiority and point to the socio-environmental causes, the legacy of slavery and imperialism, of their comparative lack of achievement in multicultural countries like the United States. Being focused, intellectual, frank or even hypersensitive to sensory disturbances are all great qualities. What is wrong is a society that labels such traits as pathological.
The problems faced by most people diagnosed with Asperger's Syndrome will not be solved until we remove confusing psychiatric labels and dissociate culturally mediated personality traits from cases of severe intellectual impairment or severe communication disorders. We need to look at our society, not at biomedical solutions to personal problems.