Adults on the Autism Spectrum Leave the Nest

Achieving Supported Independence

Nancy Perry

• Publisher: Jessica Kingsley Publishers
• Year: 2008
• Print ISBN:
  9781843109044
• eBook ISBN:
  9781846428708
• Topic: Psychology
• Subtopic: Autism Spectrum Disorders
• Index: Psychology

Children on the Autism Spectrum often grow up to find they are unable to cope effectively with the challenges of adult life. This book shows that, with the appropriate lifelong care from parents and carers, it is possible for those with neurodevelopmental disabilities to achieve supported independence and live fulfilling adult lives.

Adults on the Autism Spectrum Leave the Nest provides a guide for parents on how to prepare their children for adulthood, and describes in detail the kinds of services people with Autism Spectrum Disorders (ASDs) need in order to live independently, away from the parental home. The author explains the importance of the cognitive abilities that enable us to regulate behaviour and adapt to changing situations, known as Executive Functions, and how an individual's deficits in this area can be especially problematic in the adult world. The book provides approaches to managing Executive Function Deficits and describes an innovative therapeutic program that successfully allows adults with ASDs to live with their peers and develop meaningful adult relationships.

This book provides practical and accessible guidance for parents, therapists, people with ASDs, and anyone with an interest in helping people on the Autism Spectrum lead their lives with a sense of dignity and independence.

Part One

Understanding the Autism Spectrum Disabilities

Chapter 1

What Are Neurodevelopmental Disabilities?

Neurodevelopmental disability is a general term, not a specific diagnosis. It is one of many different terms used to describe a spectrum of symptoms and syndromes characterized by deficits in cognitive and social skills, as well as perceptual, processing, and sensory-motor skills. Broken down, the term means non-normal brain functioning that is expressed throughout the stages of development.

Autism is the neurodevelopmental disorder currently holding center stage because it is thought by some researchers, doctors, families, and other professionals to have reached epidemic proportions over the past ten years. Not everyone agrees that the prevalence is a simple matter of dramatically increased numbers of cases. An alternate theory is that awareness, diagnostic acumen, and pressure for services have all contributed to increased numbers of children being diagnosed as autistic. It is not within the scope of this book to take on that debate. A summary statement would be that autism has emerged as a focus among the neurodevelopmental disabilities, and that it has stricken families and subsequently challenged school systems and medical and financial systems that are charged to respond.

Asperger’s Syndrome is similar to autism, especially to so-called high-functioning autism. High-functioning autism describes persons with autism who are not mentally retarded and who function so much better, especially in verbal communication, than their fully autistic peers, that it makes sense to give them a separate label. Spectrum theorists tend to see high-functioning autism blending into Asperger’s Syndrome. Asperger’s kids are both hyperverbal, and impaired in age-appropriate pathways to learning about the environment—crawling, touching, physically exploring the world. Many parents are pleased with the intelligence demonstrated by their verbal little toddlers until preschool experiences show them that their children are, in fact, odd in their grasp of the physical and the social world. As peer relationships fail to develop and interests become eccentric and fixed, parents realize, sadly, that elevated verbal ability isn’t everything.

A condition similar to Asperger’s Syndrome is currently being labeled Nonverbal Learning Disorder (NLD) or sometimes Nonverbal Learning Disability, though many professionals feel both terms are awkward and misleading. Many laypeople, upon first hearing either term, conclude that the child is nonverbal. Just the opposite is the case. These children, like Asperger’s children, are very verbal. Yet some of their nonverbal skills are impaired, hence the name Nonverbal Learning Disability. And that’s not the whole story. In some ways, these children’s verbal abilities are also impaired. They are usually impaired in pragmatic language skills, meaning they make many mistakes in the non-literal uses of language when engaging in verbal behavior. Their mistakes have to do with understanding tone of voice, sarcasm and teasing, idioms and sayings, and the give and take of conversation. For that reason—that both nonverbal and verbal skills are impaired—it seems to many professionals that a better term should be found to describe this particular disability.

The confusion over terminology sometimes seems like a turf war, and in fact, can represent a serious struggle for resources. For example, if you attend a conference of people involved with Nonverbal Learning Disorder you will find that some members turn a skeptical eye toward Asperger’s Syndrome, thinking it not substantially different from NLD and perhaps not worthy of a separate label. On the other hand, some in the field hold that Nonverbal Learning Disorder is a descriptive profile, not a diagnosis like autism and Asperger’s. This assertion is on firm ground based on the authority of the Diagnostic and Statistical Manual—4th Edition (DSM-IV), the comprehensive book for diagnoses of mental disorders (American Psychiatric Association 1994). Nonverbal Learning Disorder is not included in the DSM-IV, though it could appear in the forthcoming DSM-V. Its appearance would mean the condition had “graduated” from a profile to a diagnosis. That would be a good thing if the diagnostic criteria that distinguish the condition from all others are clear, meaningful, valid, and reliable. At present they are not.

Pervasive Developmental Disorder—Not Otherwise Specified (PDDNOS) is the default diagnosis in the DSM-IV for individuals who have neurodevelopmental deficits but don’t fit the specific diagnostic criteria for autism or Asperger’s. In some ways these are the most interesting individuals to think about in the current climate because they do seem to defy clear categorization. There are children who are given the diagnosis PDD-NOS, but don’t really fit into even that catchall category. They are clearly impaired enough to be identified and singled out by their peers at the earliest grades in school. But the criteria for PDD-NOS don’t quite fit them, nor do the more specific conditions mentioned above.

When the DSM-IV is used as the authority, we speak of a spectrum of pervasive developmental disorders, or pervasive neurodevelopmental disorders. Thankfully, popular language has taken over, and lately we speak, instead, of autism spectrum disorders. There is no real difference in these terms except for the inclusion of two other very rare disorders in the DSM-IV version: Rhett’s Disorder and Childhood Disintegrative Disorder. Because of the recent focus on autism, it makes sense to use a “spectrum” term that clearly indicates we are discussing autism and its closely related conditions. Most of my discussion will be directed toward that subgroup on the autism spectrum who are labeled—perhaps mislabeled—PDD-NOS. I will refer to their deficits as “spectrum” deficits and neurodevelopmental deficits interchangeably. As awkward as the word “neurodevelopmental” is, I like it for its constant reminder that we are dealing with dysfunction in the brain that is expressed through all stages of development. Without that reminder, there is a tendency to think in terms of bad intentions when confronted with the challenging behaviors of these children and adults.

To return to the matter of inclusion on the spectrum, many parents will know that the attention deficit diagnoses (with and without hyperactivity) sometimes function as portal diagnoses into the more serious autism spectrum disorders. This actually makes a great deal of sense, as almost any neurological condition, such as acquired brain trauma from accidents and medical conditions, usually includes disruption of the attention and concentration systems. This is simply a way of saying that if the brain is impaired, the regulation and control of attention will likely be impaired as well.

Finally, many readers will be wondering if learning disabilities and learning disorders should be included in this broad spectrum of neurodevelopmental disabilities we are examining. The criteria for inclusion and the terminology in this field are in flux. For the purposes of this book, I have included anyone who has serious enough impairment to require support in adult life.

A brief look at brain development

The easiest way to understand the autism spectrum disabilities is by reviewing some basic information about brain development. The developing brain can be understood in part by observation of developmental milestones in children. From the first days of life, babies exhibit many interesting behaviors that are the outer manifestations of brain development. Notice babies’ eyes as they take in more and more of the world around them. And notice their little hands grasping things, first always using both hands in random, parallel movement and gradually learning to use each hand separately and purposefully. Crawling, standing, walking, and talking are familiar milestones all parents have been asked to report upon during diagnostic interviews, sometimes many years after those accomplishments or failures have become a blur. Delays, irregular timing, or absence of these milestones provide significant evidence that the brain is not developing normally.

Social behavior milestones occur in muddier waters. We don’t commonly talk about social development using concrete terms, like walking and talking. Some parents may observe the change from parallel play to interactive play among preschoolers and kindergartners, but many parents are fuzzy as to exactly when these changes take place and why they are important. It is also difficult for parents to interpret social behavior as evidence of brain development when we are more prone to look for signs of failure in ourselves as parents: perhaps little Spike doesn’t share with the other children because I spend too much time on the computer in the evenings. Or Judy washes her hands too often because I’ve made her afraid of germs. If you are noticing things in your child’s play, alone and with other children, that set off warning bells, you should follow up on your concerns. Time is lost when parents try to calm themselves by making excuses and hoping for the best. The child’s self-esteem also suff ers when there are no explanations, and no help, for his or her many failures, in school and in friendship. Due to the tendency to find fault with ourselves (guilt), it is the rare parent who can observe her child as a separate being in order to analyze his behavior productively. But we should aim for exactly that.

Reasoning is one of the milestone skills coming online in adolescent brains. The ability to reason can lead to delight in arguing, where once the child seemed to accept the parental point of view. But again, we confuse our thinking about this developmental stage with guilt and worry about what we’ve done to raise such “obnoxious” children. The quality of the reasoning is what parents should focus on if there is a concern about development. It can be difficult for a parent to analyze whether her child is more rigid than adolescents typically are; or whether this teenager is less able to tolerate frustration and postpone gratification than his peers. But these are the types of behaviors and traits parents should be thinking about.

The last major stage of brain development produces the executive functions. The development of these functions is gradual, beginning in early adolescence, and closely related to the development of reasoning ability. The endpoint of this development is still unknown. We used to report that it was complete by the early twenties, but estimates are being revised upward in this period of extensive brain research.

If you’ve been involved with the disability field, you may be very familiar with the term executive functions; otherwise it may be new to you. In any case, hold on to your equilibrium because here again we enter a realm of much confusion. I learned about executive functions while earning my PhD in Clinical Psychology with a focus on Neuropsychology. I believe the concept originated in the work of the great Russian neuropsychologist Alexander Luria (1973), and in the US from the pioneering work of the American neuropsychologist, Muriel Lezak. Her book Neuropsychological Assessment (2004) is in its fourth edition; major changes appear from one edition to the next in the area of executive functioning, with a great deal more being known and discussed in each succeeding edition of the book. At the moment, the understanding of executive functions is undergoing a growth spurt, and much remains to be sifted, sorted, studied, and clarified.

What are the executive functions?

The executive functions are often explained through the analogy of the conductor of an orchestra. The individual musicians represent the various intellectual abilities, like reading, thinking, calculating, and perceptions of all kinds. The conductor is needed to keep all the individual skills working together. The conductor controls the members of the orchestra, and without that control there could be a lot of great solo performances that add up to chaos. The conductor’s job may look like the easiest job on the stage, but it is the most important for the success of the whole performance. This is the way the executive functions work to organize the other skills, perceptions, and conscious functions of the human brain.

The executive functions are so important that they alone allow us to live as “normal” human beings. They include abstract reasoning and problem-solving ability. They allow us to imagine the future by predicting the consequences of current actions. They allow us to initiate behavior purposefully, and to monitor our behavior while we are simultaneously moving fl uidly through a variety of behaviors. They include initiation, judgment, working memory, decision-making, planning, organizing, and sequencing the steps toward a goal. They allow us to use foresight, hindsight, and insight. In the broadest use of the term, the executive functions also encompass regulatory functions, such as the regulation of attention and concentration, and the regulation of emotional states.

It will be easier to understand disability of the executive functions if I paint a picture of an individual with deficits in the long list of skills mentioned above. An individual with executive impairments lives in the moment. This is because he or she can’t organize their lives or carry out plans, and can’t think about the consequences of their behavior. Not being able to imagine consequences leaves him or her open to doing things on impulse that can have disastrous results, socially, and even legally speaking. Also, they have poor short-term memory so they forget plans and commitments, thus disappointing others unintentionally, and failing to meet all kinds of obligations. They have impaired attentional systems so they may be either highly distractible or, at the other end of the continuum, perseverative, or “sticky,” compelled to spend long periods of time doing the same thing, like watching TV or listening to the same music over and over. They usually want close relationships, but they don’t know how to treat others and have never had normal childhood friendships.

These individuals are close to their parents because of their failure to make friends, but they assert their right and desire not to be controlled by their parents, even as they make poor decisions over and over again. Money is like water in their hands. They make the same mistakes with money repeatedly, never learning from experience, although they “talk a good game” and can make up very believable excuses for their behavior. Except in truly autistic individuals, all these failures occur alongside virtually normal verbal skills. The conversation, at least the superficial conversation, of these individuals sounds so normal that others expect normal behavior from them. However, they fail over and over again in meeting this expectation.

This is my description of individuals with executive function impairments based upon years of working with them as they go about their daily lives. Researchers tend to prefer a more circumscribed definition of executive functions, emphasizing working memory and organizational abilities. I will make the case for including all these skills and abilities under one label at this stage of our understanding. I take this position because I’ve seen the way individuals function when they are impaired in all or most of the above-mentioned skills. The skills must be available to be used in a coordinated manner, as a group, and people who are impaired are generally not dysfunctional in just one skill, like working memory, but in the whole array of skills. Also, people with these impairments function similarly to one another, even if the etiologies, that is the organic causes, of their disorders are very diff erent. Because of their similarities, people with significant executive impairments ought to be members of a diagnostic category of their own.

Proposing a new diagnosis

Given all the confusion within the spectrum of neurodevelopmental diagnoses, why would I want to propose yet another one? Because impaired executive functions are so important they should be featured in the criteria of the diagnoses, and yet they are currently not even mentioned!

The new diagnosis, to be consistent with current DSM-IV terminology, could be called Pervasive Developmental Disorder with Primarily Executive Deficits. The criteria should include executive deficits in the presence of IQ above the mentally retarded range. Individuals with this diagnosis display strengths and weaknesses in their IQ scores as opposed to a generally lowered and flat profile as seen in typical mental retardation (Full Scale IQ below 70). Generally the Full Scale IQ is meaningless in the spectrum population, as these individuals often have a greater than 16 point diff erence between Verbal IQ and Performance IQ scores. (If you aren’t familiar with these terms yet, you probably are not very far along in dealing with disability services. If you have a child who will be tested for learning or attention disabilities, be sure to ask for an explanation of these terms.)

You may wonder why I would exclude individuals with IQ in the mentally retarded range from the proposed new diagnostic group. It is because as the whole intellectual apparatus falls into the retarded range, the executive skills are expected to be similarly impaired. In fact, executive deficits are “normal” in a retarded person. We expect concrete thinking and simple declarative answers to our questions, in conversation with a retarded person. A young woman with Down’s Syndrome recently told me about vi...

Table of contents

• Cover
• Of Related Interest
• Title Page
• Copyright
• Contents
• A Message for Parents
• Acknowledgements
• Preface
• Introduction
• Part One: Understanding the Autism Spectrum Disabilities
• Part Two: Understanding Executi ve Functions
• Part Three: Reaching Adulthood
• Part Four: A Model Program of Supported Independence
• Appendix I: A New Idea: A Variation on the Model of Group Home Living
• Appendix II: Resources
• References
• Index