The Nine Degrees of Autism

A Developmental Model for the Alignment and Reconciliation of Hidden Neurological Conditions

Philip Wylie, Wenn Lawson, Luke Beardon, Philip Wylie, Wenn Lawson, Luke Beardon

• Publisher: Routledge
• Year: 2015
• ISBN:
  9781317500681
• Edition: 1
• Topic: Psychology
• Subtopic: History & Theory in Psychology
• Index: Psychology

The Nine Degrees of Autism presents a much-needed positive tool for understanding the developmental process of autism, and to facilitate the improved mental health and well-being of individuals on the spectrum. The ground-breaking model charts nine distinct stages of development - from pre-identification, to learning to live with changes in self-image following a late diagnosis, through to self-acceptance and wellbeing. Using the model as a framework each chapter focuses on a particular stage of the process. Experts provide personal insights into the environmental and societal challenges faced by individuals with autism, and dispel a number of popular misconceptions.The positive developmental model described in this book will encourage people on the Spectrum to accept themselves by focusing on their gifts rather than weaknesses, and to avoid identifying with negative medical classifications. The developmental process which the authors describe is also applicable to other 'hidden' neurological conditions such as Dyslexia, Dyspraxia, Aphasia, and ADHD.The book should be read by anyone who wants to understand the real nature and experience of autism and will also be essential reading for a range of professionals seeking to work more effectively with individuals on the spectrum.

Part one

The autism spectrum

1

Introduction

Tony Attwood

The idea for The Nine Degrees of Autism was originally conceived by Philip Wylie. The model is consistent with my own observations over four decades as a clinician, during which I have been able to contribute to the development and increasing maturity of several thousand clients of all ages through the many transitions of their lives. Thus, I have had the advantage of a longitudinal perspective of autism. I recognize that for those who are living with autism, there is a “journey” through the lifespan to achieve self-understanding. This introduction is based on my clinical experience and provides a simplified road map to acquire self-acceptance and fulfilment through The Nine Degrees of Autism.

The journey is not easy, but is certainly worthwhile. Those contributors to this book who have autism themselves have progressed through the various degrees of autism and write as pathfinders. The other contributors to this book, such as myself, have recognized the nine degrees from their clinical practice. This book will be of great assistance to those who are on the autism spectrum and to their families. Also to other professionals and psychologists, so that we can all be involved in encouraging progression along the journey.

I also hope that the model explored in this book becomes the basis of a new psychotherapy, and that facilitating the journey will reduce mental health issues, encourage feelings of self-worth, and enable those who live with autism to make a significant contribution to society.

The nine degrees

The reader may have autism and recognize that he or she is currently within a specific degree of autism and eager to progress through the remaining degrees; or a family member or professional may want to accelerate their relative’s or client’s progress along the journey. The following is a brief summary of each degree, with corresponding chapters providing more detailed information on the characteristics of each stage of the journey, and strategies to progress to the next degree.

First degree: being born on the autism spectrum

Autism is not achieved by personal choice, and does not come about as a response to a particular parenting style. The newborn infant who is subsequently diagnosed as having autism has a brain that is wired differently, not defectively. The first person to recognize that the child’s development and abilities are different is usually the mother, or primary care giver. She or he observes that the child has:

• a tendency to avoid, or be confused or overwhelmed in, social situations
• a possible motivation to socialize, but difficulty reading body language and social cues
• intense emotions
• an unusual profile of language skills that can include language delay
• different interests to other children of the same age
• difficulty coping with unanticipated changes in routines and expectations
• a sensitivity to specific sensory experiences.

She or he may then try to provide guidance, support, and protection and will probably seek help from a specialist in developmental disorders, leading to a diagnostic assessment. When a child is diagnosed with autism Level 1 (Asperger’s syndrome) the signs have usually been recognized in early childhood, often by a teacher who has an understanding of the profile of abilities of a typical child of that age. The teacher perceives that this child is unusual and has a pattern of abilities consistent with the characteristics of being on the autism spectrum.

Sometimes the diagnosis is achieved later in life, during the adolescent or adult years, either because the signs are more subtle or have been deliberately “masked” since early childhood. They may not become apparent to family members, teachers, and clinicians until more complex social demands begin to exceed abilities or coping strategies. There may be the development of a secondary mood or personality disorder; or the adult him- or herself may acquire knowledge on autism, perhaps from the media. Sometimes a relative achieves a diagnosis, and the adult recognizes similarities to his or her own abilities and experiences. Thus the brain is wired differently in utero, but the diagnosis can take many years – even decades – to be formally recognized.

Second degree: knowing you are different

For very young children, the concept of being different to peers is primarily in terms of gender or race. At around six to eight years, children have an increasing recognition of difference in fellow students in terms of abilities, interests, and personality.

It is at this stage of development that the child who is on the autism spectrum recognizes he or she is conspicuously different to peers. This is in terms of interests, social understanding and inclusion, intensity of emotions, and reaction to specific sensory experiences. The child may then question why he or she is not invited to parties, and is rejected when wanting to participate in social play. Other children’s interests may be viewed as too complex or boring.

It is at this stage that typical children become natural “child psychologists,” having a clear schema of what is typical behavior of children of the same age. They also recognize a qualitative difference between themselves and the child who has autism. This recognition can lead to a change in acceptance of that difference, with some children becoming more compassionate and supportive, while others enjoy isolating, teasing, and ridiculing the child. This latter experience may have a devastating effect on self-esteem and cause the individual to develop secondary physical and mental health issues associated with the third degree of autism.

Third degree: developing secondary physical and mental health problems

There is a range of compensatory and adjustment strategies to being different that may be used by individuals living with autism. Some of these are constructive. Others are destructive in terms of the development of an accurate and positive sense of self, or the development of mental health problems. The strategy used will depend on the individual’s personality, experiences, and circumstances.

Those individuals who tend to internalize thoughts and feelings may develop a sense of self-blame and see themselves as defective, leading to the development of a reactive depression. Alternatively, the individual may use imagination and the creation of a fantasy life to escape into another world in which the person is more successful and valued. Those individuals who tend to externalize thoughts and feelings can become arrogant and feel superior to others, who are to be despised and corrected; or they may view others as the solution to the problem of being different, by developing the ability to observe, analyze, and imitate. It is worthwhile further exploring each compensatory or adjustment strategy in terms of the propensity to develop secondary physical and mental health problems.

Depression

Some individuals as young as six years old who have autism may develop signs of depression as a result of their insight into being different, and perceiving difference as a defect. They may not intuitively know how to achieve social inclusion and may lack guidance in how to develop and maintain friendships. This can lead to a crisis in confidence and very low self-esteem. The seeds of a clinical depression may be sown, with the start of negative, pessimistic, or depressive thinking and a belief in the criticisms and derogatory comments of peers.

For those with autism there may be a tendency to experience negative emotions very intensely. In a situation that would be expected to create a relatively mild level of sadness or despair, the person on the autism spectrum may have a catastrophic reaction; I use the term “depression attack.” Such a response can be to a situation where the person feels different or defective, and the intensity may be perceived by others as excessive. However, it is very real for the person who is experiencing this. Fortunately, such a “depression attack” is usually short-lived.

When the signs of depression are of clinical significance and become prolonged, there will be a loss of energy, reduced insight into how to cope with life, and, for some, delayed progress to the next phase of the journey. Low self-esteem and periodic depression can last decades or a life time. We urgently need to develop strategies and therapy to alleviate the signs of depression and change negative thinking and feelings of low self-worth. The low mood and energy levels associated with depression can also affect physical health, with a resultant lethargy and a tendency to adopt an unhealthy lifestyle.

Escape into imagination

A more constructive internalization of thoughts and feelings about being different is to escape into imagination. Some who have autism can develop a vivid and complex imaginary world as an alternative to reality. The imaginary world is safe from any predatory peers, perhaps featuring imaginary friends who are kind, understanding, and supportive. In this make-believe world the individual is respected and valued. Their experiences and outcomes are all under their control.

While escaping into imagination can be a very enjoyable experience, there are risks. For example, under conditions of extreme stress, social isolation and loneliness, the internal fantasy world may become an enjoyable “reality.” But, the individual may be oblivious to his or her surroundings and to the reaction of other people, who may well misinterpret the person’s state of mind.

The personality characteristics that indicate detachment from social relationships, such as not needing friendships or a close relationship, a preference for solitary activities, and an indifference to the praise or criticisms of others, can lead to a diagnosis of Schizoid Personality Disorder or be perceived as an early sign of schizophrenia. However, the ability to create alternative worlds can lead to a successful career as an author or playwright, and probably explains the great interest of some in fantasy, literature and films, alternative cultures, and periods of history, as well as avatar computer and Internet games.

Denial and arrogance

The alternative to internalizing thoughts of being different and defective is to externalize both the cause and the solution to these feelings. The individual develops a form of over-compensation by avidly denying he or she has any “defect,” and claiming the “fault” is in other people. The individual may be desperate to conceal any social difficulties and not appear socially stupid. The individual finds comfort in feeling intellectually superior to others. This attitude can alienate peers. The individual tends to vehemently deny being different, rejecting programs to improve social understanding as “others have the problems, not me.” Thus, there may be no motivation to change self-perception and no acknowledgment that there is value in accepting help and perceiving oneself more realistically in order to progress to the next degree.

The feelings of grandiosity, the perception of being special, and the need for admiration rather than correction, together with a sense of entitlement and arrogance, can lead to a secondary diagnosis of Narcissistic Personality Disorder.

Imitation

An intelligent and constructive compensatory mechanism is to observe, analyze, absorb, and imitate the characteristics and mannerisms of those who are socially successful. The strategy is to “wear a mask” to hide the real self, to “pretend to be normal,” and to become the person other people would like you to be. It means becoming an expert mimic, “faking it ’til you make it,” and creating a script for social situations based on observations of similar situations. This may lead to social acceptance, but the psychological and energy costs are excessive.

There can be intense performance anxiety prior to and during social interactions, and intense emotional and intellectual exhaustion afterward. There may be a great reluctance to reveal the true self, as there is a belief that person is defective and would be rejected. Imitation and the creation of a range of personas to achieve social integration and acceptance can lead to signs of episodic depression and a potential diagnosis of Dissociative Identity Disorder, previously known as Multiple Personality Disorder.

Other physical and mental health problems

In this third phase, the person consumes a great amount of energy to cope with being different and experiences considerable and continuously high levels of stress. We therefore expect the development of stress-related physical illnesses and a detrimental effect on the functioning of the immune system.

An instability in interpersonal relationships and self-image, volatile and difficult-to-manage anger, as well as fear of abandonment, identity disturbance, and suicidal ideation can all lead to a secondary diagnosis of Borderline Personality Disorder.

The person may also search for a “cure” and may be wondering if changing gender would resolve the interpersonal issues, or perhaps using alcohol and drugs to feel detached and safe from the aversive experiences of life.

Another coping mechanism is to become a recluse in one’s bedroom, which effectively “dissolves” the main characteristic of autism, namely, the difficulty in social communication and social interaction. If there is no one to interact with, there is no social problem and no experience of rejection. The person can then be free to engage in an enjoyable special interest, which, because he or she is alone, does not annoy the family, who may otherwise insist on restricting access to the interest. Isolated in one’s bedroom, there are no changes to routine and there is a stable and acceptable sensory environment. Thus, it is easy to understand why there may be a determination to maintain self-imposed isolation, and also why the person pursues the discovery of a functional “cure” and denies the need to progress to the fourth degree.

Fourth degree: self-identification

The goal of the fourth degree is to achieve an accurate sense of self, based on strengths rather than weaknesses, and not based on criticisms from peers or family members, or on trying to resolve past experiences. It is the deconstruction of the previous self-perception and the construction of a new concept of self.

To do this, the person will need a more objective self-reflection and a vocabulary of words and terms to describe the inner self. From my clinical experience, those who are on the autism sp...