Autism: the Hype

autism and higher education do not mix

 

The last few years have seen a rapid increase in the number of both children and adults diagnosed with autism. As a result many people now have one or two autists among their family and friends. On a significant number of primary schools, too, pupils suffering from the disorder are enlisted. There are even some classes which feature multiple pupils diagnosed with either Autism Spectrum Disorder (ASD) or with the related Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). Both disorders are part of the so-called autism spectrum, a concept developed to classify autism in all its different manifestations: at one end of the scale we find the very severe, classical form of autism, and at the other end the more manageable disorder Asperger syndrome. This autism spectrum is often used to counter the critical questions that arise due to the increasing amount of people diagnosed with autism: "Autism is a very broad concept," the standard answer goes, "and we are now able to acknowledge also the least severe variants."

 

In this article, I will place the disproportionally high number of diagnoses in a broader cultural framework; I will devote extra attention to the overrepresented group of highly educated persons. Subsequently I will take a closer look at possible consequences of mistaken diagnosis's and in the last section I will try to make suggestions as to what may help us to turn back the tide.

 

 

1. Causes and symptoms of autism

 

The term autism spectrum encompasses several disorders. The rise in diagnoses is mostly due to increasing numbers of patients diagnosed with either Asperger's Disorder or PDD-NOS, both of which are pervasive developmental disorders. Autistic patients with an average intellegence level and similar language skills are grouped under the lable Asperger's Disorder. Patients with a pervasive developmental disorder which does not satisfy the criteria for autism are diagnosed with PDD-NOS. PDD-NOS was included in the DSM-IV in 1989, Asperger's Disorder was added in 1994 (see note 1).

 

Autism is a serious, innate disorder that has far-reaching consequences for someone's ability to function in society. The disorder is fundamentally an information processing disorder: the different senses are unable to adequately process both inward and outward sensations. The disruption of perception has various degrees of severity and may affect multiple senses; not only sight, but also touch, hearing and taste may be affected. This results in a range of different symptoms.

Neurological research suggests that the disorder is caused by brain anomalies, but as of yet our scientific knowledge is insufficient to use brain research in order to diagnose it. Research has also been done into the genetic background; one conclusion that can be drawn is that autism is not genetically inheritable.

In early childhood a child's perception of its own body is the seed from which further development germinates; the child is influenced by outward sensations, but also by bodily sensations such as fatigue and pain. If an autistic child is unable to fully experience these feelings we see that it is also unable to perceive where its own threshold of pain lies, and, consequently, where that of others lies.

Also outward sensations affect a child. If at an early stage the development is disrupted, this will affect both its body image and its awareness of the body

The body image involves a knowledge of the different parts of the own body. It is developed by the child's experience of its own body: for example by studying its hands, or by putting its toes in the mouth. It is also developed by exploring its immediate surroundings, and by handling any objects in them. A well-developed body image allows us to perform all sorts of actions without thinking about them. If its development is cut short, because sense perception is distorted, this may affect for instance a person' s eye-hand coordination. Sense stimuli are transmitted to the system of sensory motorics, and distortion of this transmittance affects for example the speed or fluidity of one's movements.

Body awareness is founded by the experience of skin contact and touching in the infantile stage. This experience literally teaches the child the limits of its own body. Our body awareness allows us to know how we relate to our immediate surroundings and to space itself; it for example gives us the ability to distinguish above from below, or distant from near. When a child's body awareness is distorted, because the right experience of skin contact is not possible, this may result in an inability to adequately handle distance and nearness in personal contact.

Thus an inaccurate body image and body awareness affects not only our movements, but also our orientation in space and time as well as our relationship with ourselves and with other people.

 

Some examples:

1. That our awareness of time is connected to our orientation in space may be glanced from an expression as common as "looking forward to something". The abilities to order and organize are based on this awareness.

2. Because its perception is fragmented and it is unable to properly distinguish the different things it perceives, an autistic child has difficulties creating a unifying whole from the different details. Bringing to mind the continually changing appearance of the human face it is understandable that it will try to close its eyes to this always ongoing and therefore confusing and frightening change. As a result the child finds it difficult to make eye-contact. This prevents it from learning how to read emotions from faces and how to express itself non-verbally. And because it lacks the mirror of others, it is also unable to properly distinguish its own feelings. Thus in autistic persons we find a lacking insight into their own emotions as well as problems with empathizing with others.

3. Because it has difficulties perceiving objects separately or in their entirety, the autistic child also finds it difficult to imbue them with meaning. This becomes even more problematic when different objects share one name. Autistic children often encounter problems while learning to understand language or when learning to abstract general principles from concrete appearances, and consequently they have trouble understanding symbols and figurative language. An early manifestation of this is an autistic toddler's inability to make the transition from simple to more imaginative games.

4. A child that has to find its way in life with this disability will be fearful and prone to react angrily and frustrated when its world is endangered. Rituals, routines and repetitions are then needed to expel the fear.

 

Summarizing the above, we can say that perception difficulties are the source from which the other problems, with movement, orientation in space and time, ordering and organizing, can be said to spring. The learning capacity is restricted by the difficulties with signification and abstraction and the socio-emotional development is slow and problematic: Autism affects one's thoughts, feelings and actions in a most profound and far-reaching way.

When an autistic child has cognitive capacity and a developed understanding of language, the symptoms are less severe, because in this case it is relatively more able to order its world and make contact with others. Nevertheless, the basic disorder is the same, and the extent to which the child can use his intelligence is limited. (see note *2)A premise that has to be met before making the diagnosis of autism, is that it is possible to trace the different symptoms back to one central cause: a disorder in the processing of sense perception.

 

PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified) is an autism related disorder. The child does not meet sufficient criteria to be diagnosed with autism properly understood. Children with PDD-NOS encounter many difficulties in the interaction with others and in all forms of communication; they often compulsively cling to rules and set activities, because this counters their fear. The cause of this disorder has not yet been sufficiently researched.

 

 

2. The increasing number of patients diagnosed with ASS or PDD-NOS in the context of social, cultural and scientific developments.

 

Parts of the following concern developments specific to the Netherlands, but most of it is applicable to the situation in other countries as well.

 

Since the sixties the individual and its development have come to play an increasingly important role in our culture. People have begun to cast off the old patterns and social relations. Self-research and self-development has gained in importance. This has also affected the study of child development: there has been an increasing attention on the research into and treatment of developmental disorders. Yet this growing research has a flip side as well: there is less patience as is to say wait and see, diagnoses are made sooner.

In the same period the emancipation of socially underrepresented groups has accelerated. Patients, or their parents, have organized and are more likely to step up for their rights than they were in the first half of the twentieth century. Parents of autistic children, too, have begun asking attention for a proper treatment of their children. They have not been without success. Autism, which used to be a relatively unknown disorder, is now widely known and discussed. Yet this too has a reverse side, as will appear from the following.

 

In the Netherlands, but also elsewhere, there has been a change in the patterns of social intercourse over the last decennia, which has been described as a transition from a culture of orders to a culture of negotiation; at the same time there has also been increase in the influence individual people can exert. Communication and co-operation have become ever more important skills. Mirroring these cultural changes, education has also become more focused on such skills. At the zenith of this development the Dutch government introduced the so-called "studiehuis," a set of educational reforms aiming to promote the pupils' personal responsibilities.

The Dutch government have been cutting educational expenses since the eighties, and related to this they introduced a project called "weer samen naar school," which may be roughly paraphrased by "let's all go together to school again." It aims to direct pupils that would previously have been educated in special schools, back to regular education. Because the already stuffed classes now also contain students with a variety of mental disorders, the project has resulted in a significantly greater workload for the teachers. The teachers have to follow special courses that teach them to recognize the symptoms of disorders and disabilities such as dyslexia, autism and ADHD. These courses however are highly theoretical and at the end the teachers have only a very basic understanding of the various disorders; the result is comparable to someone knowing the different parts of a car but never having seen the actual car in action. A specific diagnosis, however, has an important advantage for the school and the parents: they are awarded an allowance to make sure that the child is properly aided (comparable to the Disability Living Allowance in the UK, although that is focused on the child's parents only). One result of this is that whenever children, for whatever reason, encounter problems in social interaction they are readily regarded as potentially autistic children. This then forms the first step towards a diagnosis of ASD or PDD-NOS.

 

The Dutch public mental health organization has, to increase efficiency, formed special teams for the diagnosis and treatment of children with specific disorders. Thus when the schools redirect a presumably autistic child to them, it will go their special team for autism. Now scientific research has long proven that when a patient is screened for a specific disorder, this specific disorder will often be found. Thus a team focused on autism will often find symptoms of autism, and is prone to interpret the test findings onesided. A further problem is that during anamnesis the parents have to fill in question forms which they often misinterpret, because they do not know the premises. When they are asked whether the child has a restricted field of interests, they often answer in the affirmative, because they feel that their son or daughter spends to much time at the computer. What is meant, however, from the questioner's point of view, is whether the child has one-sided, non-functional interests. The child itself, meanwhile, pursues a range of interests by means of the computer, and along the way also has contacts with people that share these interests. Another problem is the objectivity, or rather subjectivity, of the patient's parents. There is often considerable disagreement between them as to the seriousness of the problem and as a result it may be difficult for the professionals to remain objective.

 

A further factor in play in recent decennia is the growing usage of the so-called Diagnostic and Statistical Manual of Mental Disorders, or simply DSM. The DSM is an internationally approved system used to classify mental disorders, which aims to achieve a certain amount of agreement over the disorders and the terminology. In it, disorders are described only in terms of their observable manifestations; there is no attention for the connection between the various symptoms, nor for their underlying causes. Yet these are important factors that have to be taken into account in order to make a correct diagnosis. There is for example a marked difference between problems with eye-contact that are caused by bashfulness, and the same problems caused by a difficulty to cope with the continually changing facial expressions. In both cases there are difficulties with social interaction, but when the cause is shyness these difficulties need not be lasting. In case of autism however, social interaction will always remain, at least to some extent, problematic.

 

The growing use of DSM as a diagnostic instrument has meant that less careful research is done into the underlying causes of symptoms, even though an understanding of the causes is fundamental to be able to interpret the symptoms properly. An additional problem in the Netherlands is that the mental health organization has agreed with the health insurance companies that patients will only be reimbursed for their costs when they are diagnosed with a disorder. For the costs of less severe problems there is no compensation. The mental health organization often uses the DSM to make their diagnoses; in DSM4, the latest update of the manual, fewer symptoms are needed to be included in the autism spectrum. This has unfortunately again increased the tendency to look for separated symptoms (see note *3).

 

In conclusion we may say that, for several different reasons, the need for diagnoses of specific disorders has grown. For an optimal efficiency, the patients have to be screened quickly; as a result less research is done into the underlying causes of the different symptoms. The disorder of autism has become 'popular' because of the current emphasis on social interaction and communication, both of which are problematic for autistic patients. The diagnosis of autism is easily made: the disorder has many different manifestations, and especially in case of the less severe varieties not all symptoms are needed in order to make the diagnosis. PDD-NOS is even more easily used simply as a label. The focal wrongdoer in all of this is the word "spectrum," which unlocks the door to a far-reaching broadening of the concept of autism. An example of this is the simplification of the Asperger syndrome, which now often simply means that someone has only isolated communicative difficulties or organizing problems.

 

Thus the explosive increase in the last fifteen years of the number of patients diagnosed with Asperger's or PDD-NOS ties in with specific cultural developments that occurred during this period.

 

 

3. Autism and intellectual giftedness: two very different but often confused concepts.
Implications for education and upbringing.

 

In the last few years also among children with an average or above-average intelligence level, the percentage diagnosed with autism or a related disorder has risen explosively. As we speak this group is now moving into secondary and higher education. To adequately cope with this group, educational institutions in the Netherlands have come up with a number of new facilities. In the city of Eindhoven for example, a secondary school has been founded that is specifically aimed at educating intellectually gifted youngsters suffering from ASD. To provide for the autistic students now registering for higher education, tutors are being trained especially to help them, and at Nijmegen's Radboud University a project has commenced to help them by means of a so-called 'buddy,' which is to assist them during their study. Meanwhile, questions are being raised as to whether it is possible in the first place to adequately assist autistic students. None, however, seems to ask the essential question, namely: what precisely are the causes for this influx of autistic students?

 

Intellectually gifted children run a greater risk of being labeled autistic, because they often superficially show a number of similarities to children suffering from Asperger's. Upon closer examination, however, if we look not only for symptoms but also for causes, we will find that there are fundamental differences as well. In the following I would like to use this group of children as a starting point for my argument.

 

Children with an above-average intelligence level may have difficulties with changing situations, simply because there are so many things they would like to discover that they are overcome by the new possibilities. Someone suffering from Asperger's superficially has similar problems, yet in his case they are caused by his difficulties to experience the world as a unity: in a changed situation he once again has to form a unity from his fragmented perceptions and this is what creates his difficulties. In their language usage, too, there is a marked difference: whereas an intellectually gifted child often has so much control that his sentences appear slightly formal, someone with Asperger's merely copies complex sentences, and then interprets them too literally.

When a gifted child remains unusually long in the realm of fantasy, this is often because he realizes that in the imagination much is possible, and that it allows his creativity to develop. However, he does know the difference between fact and fiction. A child with Asperger Disorder, on the other hand, often has difficulties maintaining this distinction.

Another difference is that someone who is intellectually gifted may be aware of all the details but never loses connection with the whole picture, while someone suffering from Asperger syndrome tends to lose the overarching picture from view and ramble on about insignificant details. There is no deepening of knowledge, and they often lose themselves in repetitions.

In the interaction with other children, children with a high intelligence level are often alone, because their thoughts are more fully developed and as a result they are often misunderstood by other children. They may become frustrated and angry because of the misunderstandings, and their social development may be stinted, or they may develop a fear of failure, but there is an element of choice in all this: often they simply work alone because the common level is not challenging enough to them. Someone with Asperger syndrome, however, is to a certain extent incapable of empathizing with others, and his problems are caused by this incapability.

As an additional problem gifted children can be late in developing their practical and locomotive skills because they often do not need the practical, concrete proceedings to achieve understanding and insight.

Also, they often see in their mind's eye what the exact result of an assignment should look like. Inclined to perfection as they are, they know not to be able to do right. This results in embarrassment and reluctance, and a tendency to avoid this kind of assignments. This may occur in gym or play, as well as in other activities.

A child with Asperger Disorder has problems in this area, in spite of therapy, because it is based upon his disorder. His movements have also a different look alike, as there is in swiftness.

Similarly, someone with an above-average intelligence level may seem to encounter problems with organizing his life. Yet because of his developed analytical capacities, it is not the organizing itself that causes the problems. They are instead caused by the fact that he often has so many ideas that he is unable to make a choice and sometimes even stops trying. Or the opposite may happen: he devotes all his attention on one subject and for a while forgets the world around him. Alternatively, he may be so aware of the deficiencies still left in his work that he thinks it is not good enough to be handed in. Sometimes his thoughts may run so fast and the result may be so unexpected, that it seems as if he has skipped necessary steps and has reached a mistaken conclusion. The organizing difficulties of autistic people, on the other hand, are caused by a fundamental inability to separate the core from the peripheral matter.

 

Those who suffer from Asperger syndrome are incapable, despite their intelligence, to follow higher secondary education, because they lack a number of basic skills. A few examples: someone who has on the whole well-developed linguistic skills, but is unable to understand the figurative or symbolic use of language, will not be able to pass his language exams at the required level. In the same way, when someone's interests are very limited and it is impossible for him to discuss anything else, he will lose connection with his co-pupils. Someone whose thinking is fragmented, is unable to identify the main ideas of texts and will not be able to make proper summaries, a skill required in many areas of study; because he is unable to empathize with others, he might also have difficulties imagining what life was like in other times or cultures, an equally important skill during education.

Fragmented thinking is of course not the same as analytical thinking, and problems are also encountered with abstract subjects such as mathematics. It is finally impossible for someone who fears change, to fit in with the secondary school life, with its ever-changing teachers and locations. (see note *4).

 

A student of mathematics, diagnosed with autism, once told me: "If it is true that I only perceive the details, I might as well abandon my study right away."

 

Although only a few years ago successfully completing one's A-levels was sufficient evidence against a possible diagnosis of autism, now the common answer is: "You might also be autistic to a small extent, the autism spectrum is a broad definition; you do not to have all symptoms, and people who are autistic can achieve a great deal when thy are properly aided." The autistic person is thus soothed with the mantra that "Asperger's is only a mild variety and can very well be dealt with."

 

 

The question bound to be raised is: "how mild should one's form of autism be to lose the label altogether?" For even if one does not fit entirely in the picture of autism, there is always PDD-NOS, or even the possibility to merely have some 'autistic features.'

 

 

4. The consequences of mistaken diagnosis's.

 

Not only those who are intellectually gifted are suffering from unjustified diagnosis's; also children who have to deal with unprocessed grief resulting from a traumatic event are often mistakenly labeled autistic. This is because they may find it difficult to adapt to social conventions. The same goes for children that were adopted and have difficulties forming new relations. The first consequence of a mistaken diagnosis is that the patients are not adequately aided.

A child that has unprocessed grief, for example, often needs to express its emotions in order to be able to move on. Yet when it is presupposed that his lack of expressiveness is the result of an autistic incapability, he will not be aided with his emotional expression, but rather he will be taught the basic skill of recognizing other people's different feelings. Thus the unprocessed grief remains and may later even grow into a depression. A similar thing occurs when a child that withdraws into his own world, for example because of a divorce of his parents, is diagnosed with autism: he will not be taught what he needs to be taught, namely that he is not responsible for what has happened: that there is no need for him to feel guilty.

In the case of intellectual giftedness, a diagnosis of Asperger syndrome or PDD-NOS often initially leads to a feeling of relief among the patient and his family; the fact that the problems are beyond their control diminishes any feelings of guilt and shame. I have even come across an 'autistic' child who told another child to go to the Dutch regional mental health institution because "then you will get a diagnosis which means that the problems are not your own fault and then you will not feel guilty any longer."

When parents are told that their child only has a mild form of autism, this often coincides with their experience. Their son or daughter, for example, may be creative, follow judo classes, play in an orchestra and may be able to discuss his or her problems openly. On the other hand he or she may encounter difficulties in social interactions, but then again not in all cases: there may be situations where the child is 'suddenly' not autistic any longer. He may find it difficult sometimes to cooperate, and to organize his affairs properly, but the parents are promised that with proper guidance he can still improve a great deal in those areas. With the other aspects of the disorder, they are told, it is not all that hard to live, especially since "nowadays in many schools, universities and working environments the disorder is taken into account, and guidance may also be realized in the domestic situation."

 

After diagnosis follows treatment. During psycho-therapy, the patient will be taught elementary information about making contact and understanding emotions, information that is often too simplistic for the patient. He will also be advised to accept his disorder, because "when one has autism social interaction will always pose difficulties."

When a studying patient fails to complete his study, he will be helped to find out what possibilities for work there still are for him. If he does continue with his study he will possibly be made independent in organizing his work. Yet had the real obstacles been recognized and taken away, he would have been able to organize his affairs by himself in the first place.

 

Thus the treatment of autism often helps to deepen feelings of insecurity in the patient, and may lead to a lack of self-confidence and a fear of failure; in some cases these even lead to an identity crisis or depression. Especially children still following primary education are often unable to shield themselves against the negative effects of a diagnosis. From the moment of diagnosis onward, they are treated as disabled children, and their real talents and possibilities are neglected. At the school they attend their disorder will appear in their health dossier, a dossier which in the Netherlands follows them throughout their education. It will be more and more difficult for them to break free from their confinement. Also adolescents still in the process of developing their identity find it difficult to protect themselves against the assault on their identity caused by an autism diagnosis, especially when they already encounter problems in their study or personal relationships. Intellectually gifted children often behave independently from a young age onward, and have ideas that run counter to accepted opinion. They also often have great feeling for social situations, and a highly developed sense of morality; unless they see the point of it, they will not conform to society. This independence often creates problems later on, especially in their relationships and education. As a result they may become overly conformist, especially when they are promised professional help if they do.

 

When someone is faultily diagnosed with autism, he will have a hard time if he wants to free himself from the label. His professional helpers, teachers, parents, family and his friends together maintain the judgment. Indications that the diagnosis might be wrong are often neglected, and remaining doubts are discredited as a lingering inability to accept the disorder. As a result the patient will more and more grow into his given role. Those who are closest to him no longer expect him to develop in a normal way and when someone is continually told that he is incapable of learning certain skills, it will be almost impossible to find the strength to prove the contrary. Thus the stigma lasts a lifetime.

 

 

5. Turning back the tide

 

One of the preliminaries for a genuine change is acknowledging that the recent increase in patients diagnosed with ASD or PDD-NOS does not reflect reality. Secondly the consequences of current medical practice will have to be taken seriously and examined carefully. The present policy is very expensive and, rather than actually helping anyone, has many damaging consequences, both on a personal level but also on a broader cultural level, because of all the talent that is wasted.

The fact that a diagnosis of autism is a precondition for attaining medical help diverts attention from the actual problems. If during diagnosis the specific situation of each patient is taken into account and his story is carefully listened to, then possible solutions to the problems will often present themselves. Tests should be used to support this dialogue with the patient, instead of the other way around. A diagnosis that is made too early gives only illusionary certainty and clouds the perception that needs to be clear for a proper guidance. Without these prematurely used labels, teachers and caregivers will be much more able to follow their actual perception and adjust their intervention to it.

I will conclude with an actual example: a teacher of Eindhoven's special school for autistic pupils was much impressed by one of her intellectually gifted but supposedly autistic pupils. He had proposed to explain a math exercise more effectively than she had done herself. She concluded that he must be intelligent indeed. Yet when you examine this pupil's action, you will see that it requires not only empathizing both emotionally and intellectually with the other pupils but also contacting the teacher about it. This alone should suffice to conclude that he can never have been autistic; if he had been he would have improved the exercise by himself. Had he not been labeled with autism, this boy would have been commended for his regard for his co-pupils and his general social behavior. This would have allowed him to become more confident in his ability to interact with others.

 

 

Francisca Scholte

April 2008

April 2011

The Netherlands

 

This article has appeared in an abridged version in "de Volkskrant" on Dec 1st, 2007.

 

 

Translated by:

 

Kasper Nijsen

March 2008

Amsterdam, The Netherlands

 

 

Author's Notes:

 

* 1

The article follows the classification according to the DSM.

In 1980 Robert Spitzer presented a third completely revisited version of the classification system.

In DSM-3 patients are only screened for symptoms. Thus the situational background is often omitted, as are causal relationships between the different symptoms. Because the causes are often debated, it is difficult to find agreement about them. In many cases the causes still unknown, or they may be approached from different theoretical frameworks.

 

A different classification system is used by the World Health Organization; it is called the International Statistical Classification of Diseases and Related Health Problems, or simply ICD. The ICD-10 and consequently the DSM-4, published in 1994, broaden the definitions of several diseases and disorders. Compared to the diagnostic criteria formulated by Gilberg and Gilberg for Asperger syndrome, the criteria that are the same are "social impairment," "repetitive routines," and "narrow interests." But several criteria have been dropped in the new definition, such as "retarded development of cognition, language and practical skills" and "interest in the immediate surroundings until the age of three." The reason for the omission of these criteria is that they are not clinically proven.

The DSM includes also classical autism (low intelligence level and linguistic skills). The classification also lists Asperger's (normal intelligence level and linguistic skills). For this disorder the aspects are taken from the work of Mr Hans Asperger, although the entirety of his work is not used in the definition.

 

* 2

Autistic persons have as a result of their disorder learning disabilities. The severity of these disabilities depends on the severity of the disorder. Yet no matter how slight the disorder, the range of skills needed to achieve one's A-levels is never wholly present.

 

* 3

The fact that, as a result of the importance of efficiency, cognitive and behavioral therapies are used more often than psychodynamic and family-system therapies, is significant in this respect; during diagnosis less attention is paid to the causes of problems.

 

* 4

Intellectually gifted persons can display a great degree of motivation for subjects that interest them. Their motivation is derived from the subject itself: aim, organization and vision co-operate. The motivation may be amplified by their involvement in others. When their involvement is directed at cultural problems, aim and vision enhance each other.

The motivation of autistic persons if often more problematic; they may be unable to see their task in its entirety and derive their motivation less from the outside world, because they are less involved in it.

 

 

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