Attwood, Tony, M.D. Exploring Feelings: Cognitive Behaviour Therapy to Manage Anger. (2004).
Appropriate for: Parents of children who are starting to be able to talk about their feelings
This workbook is broken down into six two-hour sessions with information and activities. The activities can be used in small groups of children, adapted for one child, and/or modified for different ages. The program is self-contained and a parent can implement. Attwood uses his concept of a “toolbox” with tools to “fix the feeling.” There are thinking, emotional, physical, and special interest tools. It’s an introduction to the basics of cognitive behavior therapy that challenges your child’s current thinking with logic. The author also covers comic strip conversations and social stories by Carol Gray, adapted perspective taking, and inappropriate tools. Overall, this book offers great ideas for starting a conversation about anger issues with your child in an objective way.
Attwood, Tony, Exploring Feelings: Cognitive Behaviour Therapy to Manage Anxiety. (2004).
Appropriate for: Parents of children who are starting to be able to talk about their feelings
This workbook is the companion to "Exploring Feelings: Cognitive Behaviour Therapy to Manage Anger" and is set up the same way and also explores the "mental world from a scientific perspective." The program is broken up into six two-hour sessions that can be conducted by a parent in an informal setting. The activities in this book help children define happy, relaxed, anxious, and angry; after they can identify these, they can learn how to help themselves with their anxiety. Cognitive behavioral therapy and social stories are just some of the techniques used, and the easy-to-use questionnaire and rating scale format are ideal for productive interaction. Children will learn coping tools such as "antidotes to poisonous thoughts" and physical and relaxation activities. While the book is first published in 2004, it's still in print and its straightforward data gathering techniques and practical treatment techniques are still very helpful.
Baker, Jed, Ph.D. No More Meltdowns: Positive Strategies for Managing and Preventing Out-of-Control Behavior. (2008).
Appropriate for: Parents of young children on the spectrum
Using an approach similar to the one he outlined in his previous book, The Explosive Child, Baker breaks this book down clearly into problem, solution, and plan. He explains why the typical parenting advice doesn’t apply in these situations. Discipline and rewards have their limits. Ultimately there’s no quick fix so he recommends the method of the ABCs (antecedent, behavior, consequences). The book includes a good section on what constitutes a meltdown (versus a tantrum), what they are, and why they happen. Most insightful is his breakdown of meltdowns into four types: demands; waiting; threats to self image; and unmet wishes for attention. He includes a plan for each type. The case studies he includes are actually relatable and helpful. And the author’s tone makes this incredibly challenging parenting task actually seem doable.
Buron, Kari Dunn, and Curtis, Mitzi. The Incredible Five-Point Scale: Assisting Students with Autism Spectrum Disorders in Understanding Social Interactions and Controlling Their Emotional Responses. (2003).
Appropriate for: Parents of children from around 5 on through to adults who can use this tool themselves
This slim book teaches parents how to use a simple five-point scale to support a program for teaching social understanding. There are many advantages to using such scales; one of the most important is that a scale can break down abstract concepts and behaviors and make it visual. A scale can be presented with a social story or a short “memo” to explain it. The authors offer numerous examples of the multiple different ways the scales can be used and adapted. Older children can work with you to figure out their own scale. , This can help them to start to figure out how to self-regulate and cope. Some scales are very simple and some are complex, and there are plenty of examples that give you enough information to also design your own scales that will work best with your child and home situation.
Cooper-Kahn, Ph.D., and Laurie Dietzel, Ph.D. Late, Lost, and Unprepared: A Parents' Guide to Helping Children with Executive Functioning. (2008).
Appropriate for: Parents of children in middle or high school
Many kids on the spectrum have executive functioning issues, and this book concisely explains what those issues are and how best to address them. The first half of the book defines executive functioning deficits and the second half focuses on what can be done to address each of those deficits. With lots of case studies, suggestions, and tips, this is a very accessible book with easily implemented ideas. The basic premise is that all of these challenges (from difficulty transitioning to not turning in homework) have short-term and long-term solutions. The short chapters are clearly set up so you can pick and choose which apply to your child. This is the only book you'll need regarding executive functioning.
Elliott, Glen R. Ph.D., M.D., with Kate Kelly. Medicating Young Minds: How to Know If Psychiatric Drugs Will Help or Hurt Your Child. (2006).
Appropriate for: Parents of young children who are thinking about or already are medicating their children
Reading this book is like going on a trip to the psychiatrist’s office. Elliott, well-known in his field and a frequent speaker at autism conferences in the Bay Area, has a very balanced, conservative approach, which is really what you want when you’re considering medicating your child. There are clear explanations of behavioral and mood disorders and how to treat them behaviorially and medically. I especially like the section on the types of psychiatric drugs and have referred to it whenever my son’s medication changes. When you decide to put your child on medication, it’s unlike any other treatment in that you can potentially do your child harm. It’s critical to know the benefits and the risks. Even with the best medication regimen, it won’t solve your child’s problem; it’s only one component of your treatment plan. Psychiatry is an inexact science and anything but simple. This book is a great introduction to the world of psychiatric medications and I am constantly loaning it out to people who are considering putting their child on medication.
Gerlach, Elizabeth King. Autism Treatment Guide, Second Edition. (2000).
Appropriate for: Parents of children with autistic spectrum disorders
I bought this book in my first frenzy of book-buying after my son’s diagnosis. I wanted a book to walk me through my options and tell me what I should be doing for my son. I bought it sight-unseen online and never would have bought it if I could have quickly flipped through it before making the decision to purchase. It is an objective outlining of the definition and diagnosis of, and tests and treatments for autism. Approximately a paragraph is devoted to each treatment available ranging from ABA, sensory integration, and diets to supplements and craniosacral SM therapy. There are many suggested reading lists. Much has been written about treatments since this book was published and it comes off as very outdated. The author’s objectivity is appreciated, but his commitment to giving equal weight to all treatments can be misleading. I would recommend Richard L. Simpson’s Autism Spectrum Disorders: Interventions and Treatments for Children and Youth instead.
Greene, Ross W., Ph.D. The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children, Second Edition. (2001).
Appropriate for: Parents of elementary and middle school children on the spectrum
Greene describes life with an “inflexible-explosive child,” one with inflexibility and low frustration tolerance. After chapters of description and case studies, that include numerous reasons why typical strategies of rewards, motivation, and punishment don’t work, he proposes his two-part plan. First, create an environment that sets the stage for you and your child to work together on inflexibility and explosiveness (being more realistic, more aware, taking things less personally, etc.). Second, address your child’s difficulties in a more direct way so he doesn’t need the special environment you have created forever. Ross proposes that parents should have a clear understanding of their child’s unique difficulties and the factors that cause issues. When you see your child heading toward that tantrum, he counsels, use empathy, logic, distraction, downshifting. He suggests a very helpful analogy of putting your child’s issues into three “baskets.” Basket A contains issues that are important enough to induce and endure a meltdown. Basket B has issues that are important but that you are not willing to endure a meltdown over, so you provide solutions and suggestions, empathy, and an invitation to work it out. Basket C contains all of those issues that you may have thought were priorities at one time and just aren’t anymore.
Gutstein, Steven E., Ph.D. Autism Aspergers: Solving the Relationship Puzzle: A New Developmental Program That Opens the Door to Lifelong Social and Emotional Growth (2000).
Appropriate for: Parents interested in learning about the RDI method
Gutstein's latest book, The RDI Book, essentially makes this book obsolete and outlines the Relationship Development Intervention Program a little differently. Six levels of "experience sharing" are outlined, each one building on the previous one, starting with "Laying the Foundation for Relationshiop Development" to "True Friends." There are many descriptions of different exercises and activities, but this book reads like a clinician's handbook more than a tool that parents interested in the program can use.
Gutstein, Steven E., Ph.D. The RDI Book: Forging New Pathways for Autism, Asperger's and PDD with The Relationship Development Intervention Program. (2009).
Appropriate for: Parents interested in learning about the RDI method
This book supplants the seminal work by Gutstein, Autism Aspergers: Solving the Relationship Puzzle: A New Developmental Program That Opens the Door to Lifelong Social and Emotional Growth (2000). Gutstein puts forth the notion that every culture has some type of collaborative, natural learning process and through the program he's developed, Relationship Development Intervention (RDI), this process can be restored to those to whom it does not come naturally. He posits that this is achieved through a Guided Participation Relationship (GDR) in which the "guide" helps the "appentice" by working side by side and scaffolding skills. Part 1 of the book defines the guide and apprentice roles and gives a thorough overview of typical development patterns. Part 2 explains the goals of RDI with detailed examples of what they look like. This is not a how-to book, however. To implement this strategy, you must hire a consultant who has specialized training. Depending on the area in which you live, this may or may not be an issue. So while the information about learning differences and the (somewhat exhausting) examples and case studies are interesting, this book reads largely like a sales tool for the program and not a stand-alone tool for parents.
Moor, Julia. Playing, Laughing, and Learning with Children on the Autism Spectrum: A Practical Resource of Play Ideas for Parents and Careers. (2002).
Appropriate for: Parents of young children on the spectrum
This was one of the first books I read when my son was diagnosed and I realized how little he actually knew about playing appropriately. This is a very positive book full of good ideas about how to develop your child’s play skills and also finding ways to connect with your child through play. If it’s a struggle to reach your child, you can try Moor’s various methods including physical methods like tickling, or singing, hand movements, rough and tumble play or sedate play. There are also explanations of how to structure play with goals like turn taking or with themes. Most of the common behavioral therapies are mentioned like ABA, TEACCH, and PECS. The author also covers appropriate toys and how you can use the typical toddler toys such as puzzles, games, imaginative play sets, water pay, music, crafts, and even TV, to create a fun learning experience. The author focuses on all the incidental teaching that can be done which is really what so much of parenting a child on the spectrum is all about. One thing to note, however, is that the author is from England and most of the resources mentioned are British. Moor usually lists an American equivalent resource.
Ory, Nathan. Working with People with Challenging Behaviors: A Guide for Maintaining Positive Relationships, Second Edition. (2007).
Appropriate for: Anyone working or living with someone with behavior issues
This is the closest book I’ve found to an instruction manual for my child. It’s the companion book to two-day program that Nathan Ory put on and its practical, realistic approach to handling a child who is anxious and volatile is very usable. I actually highlighted this book and reread it. Each chapter offers possible causes and patterns of behavior along with generative factors, prevention, guidance, training, and crisis management. The crisis management is one of the key features that sets his approach apart. With so many books focused on prevention, it can be disheartening and leave you frustrated asking, “What if I tried all of that and my kid still flips out? What do I do then?” This book answers those questions.
Ozonoff, Sally; Dawson, Geraldine; and McPartland, James. A Parent’s Guide to Asperger Syndrome and High-Functioning Autism: How to Meet the Challenges and Help Your Child Thrives. (2002).
Appropriate for: Parents of children who have symptoms of high-functioning autism, PDD-NOS, and Asperger’s of all ages. I think the best time to read this book is as your child is moving from preschool into the school system.
This book starts out with the usual definitions of the spectrum disorders and the diagnostic process. It also includes a short helpful section on how and when to tell your children about his or her autistic symptoms. There is a chapter on the causes of autism (the authors support the view that it is highly unlikely that the MMR vaccine causes autism). Treatment options are covered next, starting at the preschool level and moving up through to adulthood. A traditional assortment of treatments like ABA, TEACCH, social and behavioral interventions, is discussed as well as sensory integration, dietary treatments vitamin supplements (the authors site inconclusive evidence of effectiveness), and the all-important, but often-neglected, family support. Moving beyond just a laundry list of treatment options, the authors explain how to play on your child’s strengths to help him or her with challenging behaviors at home. This content includes information on determining what your child is trying to communicate with an undesirable behavior, how to substitute that behavior for a desirable one, and how to reward your child for good behavior. The authors give helpful tools and strategies on key issues such as how to cope with difficult times of the day at home. They also address options for school placement and how parents should go about determining which option is best and how to work with the district. The book goes into wonderful detail about the typical academic challenges these kids have from preschool on up through college and how best to address these challenges. The all-important social skills are addressed as well as the many ways in which they can be taught—in formal groups and more informally. There is also a chapter on young adulthood, touching on topics like whether or not to disclose the diagnosis, and the dreaded topics of sexual development, romantic relationships, self-esteem, as well as college, adult living arrangements, and employment. The authors acknowledge that much of what is known about adolescents is based on the late-diagnosed, not on the more recent generation of children who may have benefited from early intervention. Although all the tough topics are dealt with, the authors’ tone is gentle and sensible. This book is full of lots of examples of children of all ages and symptoms and the overarching positive tone is reassuring.
Schwartz, Sue, PhD. The New Language of Toys: Teaching Communication Skills to Children with Special Needs. (2004).
Appropriate for: Parents of young children on the spectrum
When Floor Time therapy was recommended for my son, this was one of the books I purchased. It if full of ideas for parents on how to stimulate language and increase play skills with popular toys and household items. There is a section on the development of language that is a helpful gauge to see where your child’s abilities are. This is book for children not just with autism, but it works well in that capacity. Some of the toys listed may not be currently available, but there is sure to be a current suitable substitute (blocks, bubbles, train sets, etc.). Chapters are broken down by age group through age 6. The lists at the end of each chapter provides an idea of the vocabulary and concepts that your child should be exposed to and familiar with at each developmental stage. There is also a useful list of children’s books and a chart for language, physical, and cognitive milestones at the end of each chapter. In addition, the author touches on incidental teaching and how much of that can happen during a relaxed play session.
Siegel, Bryna. Getting the Best for Your Child with Autism: An Expert’s Guide to Treatment. (2008).
Appropriate for: Parents of a newly diagnosed child
As soon as you see the red flags indicating that your child may be on the spectrum, this is the book to read. I wish I had been given this book after Dr. Siegel diagnosed my son with PDD-NOS. Reading it is like having a conversation in her office. She both poses and answers all the questions you thought of and remembered to write down and bring to the appointment as well as the ones you thought of in the car ride home. This is a book for parents, not therapists, so it thoroughly walks you through the assessment and diagnosis process, the impact a diagnosis has on your family, and how to start getting the treatment your child needs. Thankfully it repeatedly addresses that question that all parents perseverate on “How many hours of treatment does my child need?” Dr. Siegel equips parents to go out there and do what we’re all encouraged to do—become the expert on your child and put his or her program together. Extremely helpful is a chapter on the IEP process written by a Special Education lawyer. The book concludes with some very sound advice on creating peaceful, effective relationships with your child’s teacher and therapists. This is the book I’d read before Siegel’s The World of the Autistic Child (which parents just entering this world may find frightening). I’d follow it with Siegel’s Helping Children with Autism Learn.
Siegel, Bryna. The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders. (1996).
Appropriate for: Parents who have accepted that their child has autism
This book is not for the feint of heart. After our son with diagnosed with PDD-NOS by Bryna Seigel, my husband and I bought two copies of this book at the UCSF book store. I read one copy and gave the other copy to my mother and then we passed a copy along to my father in-law. It was a hard read for me at the time, but even so I appreciated its comprehensiveness and detail. As informative as this book will be for you to read, you may not want to pass this one on to concerned family members. You will learn so much while reading it—things that shell-shocked parents need to cope with, but grandparents shouldn’t have to. (For example, in the first few pages, you read that 80% of children with autism have some degree of mental retardation and about some of the causes of autism.) It’s a splash of cold water in your face after the diagnosis and it gets you up and ready to tackle the instant challenges you face. It’s also a rite of passage into a club in which you find yourself an instant member. Bryna Siegel is irrefutably an expert and this book is considered the bible on autism. I turn here when I want a clear, concise definitions of terms and an overview of all the autistic symptoms that all parents should know when they are communicating with the professionals who will help their children. It’s an easy book to read around in. Dr. Siegel takes you through the diagnosis process and the IEP process, and she covers all therapies. But it’s not all about the technical jargon and statistics. You’ll also find information on what parents feel after getting a diagnosis and how interpersonal relationships and the family dynamics will change. Dr. Siegel knows all the questions parents typically ask when they are confronted with a diagnosis and she attempts to answer them all. Some of the direct language makes me wince sometimes, but as many people who have met Dr. Siegel, including me, know, she doesn’t sugar coat things. That works for me because I want to hear it straight, but if you’re not ready, get this book and reach for it when you are. And again don’t give it to grandparents.
Simpson, Richard L. Autism Spectrum Disorders: Interventions and Treatments for Children and Youth. (2005).
Appropriate for: Parents of young children on the spectrum
For those who want a comprehensive, straightforward synopsis of all the current treatments and interventions, this is a wonderful resource. Treatments and interventions are organized into four broad categories: 1. interpersonal relationship; 2. skill-based; 3. cognitive, physiological, biological, and neurological; and 4. other. Information about each intervention is then broken down into age/ability level, description, reported benefits and effects, how outcomes related to utilization, qualifications of persons implementing, potential risks, cost, method for evaluating efficacy, and conclusions. Most interestingly, however, each treatment is then rated as one of the following: scientifically based; promising practice; practice for which there is limited supporting information; or not recommended (those shown to lack efficacy and that may have the potential to do harm). This is invaluable to the lay person sorting through the information. Once you get the basics from the book, you can follow up with the references and suggested readings.
Walton, Susan. Coloring Outside Autism’s Lines: 50+ Activities, Adventures, and Celebrations for Families with Children with Autism. (2010).
Appropriate for: Parents with young children on the spectrum
I wish I’d had this book five years ago when my son was preschool-aged. It’s a real-life manual written by a mother with an autistic son who explains that it’s okay not to force your child into every social situation because it just might not work for you. Not only does she give many good suggestions on where to take your child, but she is honest about the limitations and the huge amount of prep work it requires to take your child on excursions, no matter how close to home. She also touches on the touchy subjects of friends (old ones that you will have to let go of and new ones that you’ll have to find) and holidays (it’s okay to split up the family and break with long-held family traditions. Well-written and easy-to-relate-to, this book is a great one to pick up before a long holiday or summer break when you’re contemplating places to go and things to do.
Winner, Michelle Garcia. Thinking About YOU Thinking About ME: Philosophy and Strategies to Further Develop Perspective Taking and Communicative Abilities for Persons with Social Cognitive Deficits, Second Edition. (2006).
Appropriate for: Teachers and paraprofessionals, but parents can get a lot out if it too
This is not a program that parents can implement themselves at home without professional support, but if your child’s teacher or behavioral therapist is following this curriculum, it’s a great way to learn more or reinforce what you know. You might also be able to use some of the handouts or use the information within to prepare for an IEP meeting. As the author states, the mission of this book is to “focus exclusively on the ability to understand the perspective of others (more formally referred to as Theory of Mind).” This program helps children to more consciously “think, know, decide, and guess.” It teaches them to ask themselves, What do you know? What can you guess? And how can you solve the problem? An idea that parents can take away, which I really like is the “Me Binder” for older kids (middle school and beyond). A Me Binder includes a child’s schedule. It also maps out, in language that the child can understand, his or her goals, a plan for and how they are going to be met, and an explanation of every professional service or therapy received. There are even step-by-step instructions for working with each professional that your child can follow. I foresee that when my son, who is resentful if he has to do anything that he doesn’t think is relevant to him, get older, the Me Binder is going to be a very useful tool for our family.
Appropriate for: Parents of children who are starting to be able to talk about their feelings
This workbook is broken down into six two-hour sessions with information and activities. The activities can be used in small groups of children, adapted for one child, and/or modified for different ages. The program is self-contained and a parent can implement. Attwood uses his concept of a “toolbox” with tools to “fix the feeling.” There are thinking, emotional, physical, and special interest tools. It’s an introduction to the basics of cognitive behavior therapy that challenges your child’s current thinking with logic. The author also covers comic strip conversations and social stories by Carol Gray, adapted perspective taking, and inappropriate tools. Overall, this book offers great ideas for starting a conversation about anger issues with your child in an objective way.
Attwood, Tony, Exploring Feelings: Cognitive Behaviour Therapy to Manage Anxiety. (2004).
Appropriate for: Parents of children who are starting to be able to talk about their feelings
This workbook is the companion to "Exploring Feelings: Cognitive Behaviour Therapy to Manage Anger" and is set up the same way and also explores the "mental world from a scientific perspective." The program is broken up into six two-hour sessions that can be conducted by a parent in an informal setting. The activities in this book help children define happy, relaxed, anxious, and angry; after they can identify these, they can learn how to help themselves with their anxiety. Cognitive behavioral therapy and social stories are just some of the techniques used, and the easy-to-use questionnaire and rating scale format are ideal for productive interaction. Children will learn coping tools such as "antidotes to poisonous thoughts" and physical and relaxation activities. While the book is first published in 2004, it's still in print and its straightforward data gathering techniques and practical treatment techniques are still very helpful.
Baker, Jed, Ph.D. No More Meltdowns: Positive Strategies for Managing and Preventing Out-of-Control Behavior. (2008).
Appropriate for: Parents of young children on the spectrum
Using an approach similar to the one he outlined in his previous book, The Explosive Child, Baker breaks this book down clearly into problem, solution, and plan. He explains why the typical parenting advice doesn’t apply in these situations. Discipline and rewards have their limits. Ultimately there’s no quick fix so he recommends the method of the ABCs (antecedent, behavior, consequences). The book includes a good section on what constitutes a meltdown (versus a tantrum), what they are, and why they happen. Most insightful is his breakdown of meltdowns into four types: demands; waiting; threats to self image; and unmet wishes for attention. He includes a plan for each type. The case studies he includes are actually relatable and helpful. And the author’s tone makes this incredibly challenging parenting task actually seem doable.
Buron, Kari Dunn, and Curtis, Mitzi. The Incredible Five-Point Scale: Assisting Students with Autism Spectrum Disorders in Understanding Social Interactions and Controlling Their Emotional Responses. (2003).
Appropriate for: Parents of children from around 5 on through to adults who can use this tool themselves
This slim book teaches parents how to use a simple five-point scale to support a program for teaching social understanding. There are many advantages to using such scales; one of the most important is that a scale can break down abstract concepts and behaviors and make it visual. A scale can be presented with a social story or a short “memo” to explain it. The authors offer numerous examples of the multiple different ways the scales can be used and adapted. Older children can work with you to figure out their own scale. , This can help them to start to figure out how to self-regulate and cope. Some scales are very simple and some are complex, and there are plenty of examples that give you enough information to also design your own scales that will work best with your child and home situation.
Cooper-Kahn, Ph.D., and Laurie Dietzel, Ph.D. Late, Lost, and Unprepared: A Parents' Guide to Helping Children with Executive Functioning. (2008).
Appropriate for: Parents of children in middle or high school
Many kids on the spectrum have executive functioning issues, and this book concisely explains what those issues are and how best to address them. The first half of the book defines executive functioning deficits and the second half focuses on what can be done to address each of those deficits. With lots of case studies, suggestions, and tips, this is a very accessible book with easily implemented ideas. The basic premise is that all of these challenges (from difficulty transitioning to not turning in homework) have short-term and long-term solutions. The short chapters are clearly set up so you can pick and choose which apply to your child. This is the only book you'll need regarding executive functioning.
Elliott, Glen R. Ph.D., M.D., with Kate Kelly. Medicating Young Minds: How to Know If Psychiatric Drugs Will Help or Hurt Your Child. (2006).
Appropriate for: Parents of young children who are thinking about or already are medicating their children
Reading this book is like going on a trip to the psychiatrist’s office. Elliott, well-known in his field and a frequent speaker at autism conferences in the Bay Area, has a very balanced, conservative approach, which is really what you want when you’re considering medicating your child. There are clear explanations of behavioral and mood disorders and how to treat them behaviorially and medically. I especially like the section on the types of psychiatric drugs and have referred to it whenever my son’s medication changes. When you decide to put your child on medication, it’s unlike any other treatment in that you can potentially do your child harm. It’s critical to know the benefits and the risks. Even with the best medication regimen, it won’t solve your child’s problem; it’s only one component of your treatment plan. Psychiatry is an inexact science and anything but simple. This book is a great introduction to the world of psychiatric medications and I am constantly loaning it out to people who are considering putting their child on medication.
Gerlach, Elizabeth King. Autism Treatment Guide, Second Edition. (2000).
Appropriate for: Parents of children with autistic spectrum disorders
I bought this book in my first frenzy of book-buying after my son’s diagnosis. I wanted a book to walk me through my options and tell me what I should be doing for my son. I bought it sight-unseen online and never would have bought it if I could have quickly flipped through it before making the decision to purchase. It is an objective outlining of the definition and diagnosis of, and tests and treatments for autism. Approximately a paragraph is devoted to each treatment available ranging from ABA, sensory integration, and diets to supplements and craniosacral SM therapy. There are many suggested reading lists. Much has been written about treatments since this book was published and it comes off as very outdated. The author’s objectivity is appreciated, but his commitment to giving equal weight to all treatments can be misleading. I would recommend Richard L. Simpson’s Autism Spectrum Disorders: Interventions and Treatments for Children and Youth instead.
Greene, Ross W., Ph.D. The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children, Second Edition. (2001).
Appropriate for: Parents of elementary and middle school children on the spectrum
Greene describes life with an “inflexible-explosive child,” one with inflexibility and low frustration tolerance. After chapters of description and case studies, that include numerous reasons why typical strategies of rewards, motivation, and punishment don’t work, he proposes his two-part plan. First, create an environment that sets the stage for you and your child to work together on inflexibility and explosiveness (being more realistic, more aware, taking things less personally, etc.). Second, address your child’s difficulties in a more direct way so he doesn’t need the special environment you have created forever. Ross proposes that parents should have a clear understanding of their child’s unique difficulties and the factors that cause issues. When you see your child heading toward that tantrum, he counsels, use empathy, logic, distraction, downshifting. He suggests a very helpful analogy of putting your child’s issues into three “baskets.” Basket A contains issues that are important enough to induce and endure a meltdown. Basket B has issues that are important but that you are not willing to endure a meltdown over, so you provide solutions and suggestions, empathy, and an invitation to work it out. Basket C contains all of those issues that you may have thought were priorities at one time and just aren’t anymore.
Gutstein, Steven E., Ph.D. Autism Aspergers: Solving the Relationship Puzzle: A New Developmental Program That Opens the Door to Lifelong Social and Emotional Growth (2000).
Appropriate for: Parents interested in learning about the RDI method
Gutstein's latest book, The RDI Book, essentially makes this book obsolete and outlines the Relationship Development Intervention Program a little differently. Six levels of "experience sharing" are outlined, each one building on the previous one, starting with "Laying the Foundation for Relationshiop Development" to "True Friends." There are many descriptions of different exercises and activities, but this book reads like a clinician's handbook more than a tool that parents interested in the program can use.
Gutstein, Steven E., Ph.D. The RDI Book: Forging New Pathways for Autism, Asperger's and PDD with The Relationship Development Intervention Program. (2009).
Appropriate for: Parents interested in learning about the RDI method
This book supplants the seminal work by Gutstein, Autism Aspergers: Solving the Relationship Puzzle: A New Developmental Program That Opens the Door to Lifelong Social and Emotional Growth (2000). Gutstein puts forth the notion that every culture has some type of collaborative, natural learning process and through the program he's developed, Relationship Development Intervention (RDI), this process can be restored to those to whom it does not come naturally. He posits that this is achieved through a Guided Participation Relationship (GDR) in which the "guide" helps the "appentice" by working side by side and scaffolding skills. Part 1 of the book defines the guide and apprentice roles and gives a thorough overview of typical development patterns. Part 2 explains the goals of RDI with detailed examples of what they look like. This is not a how-to book, however. To implement this strategy, you must hire a consultant who has specialized training. Depending on the area in which you live, this may or may not be an issue. So while the information about learning differences and the (somewhat exhausting) examples and case studies are interesting, this book reads largely like a sales tool for the program and not a stand-alone tool for parents.
Moor, Julia. Playing, Laughing, and Learning with Children on the Autism Spectrum: A Practical Resource of Play Ideas for Parents and Careers. (2002).
Appropriate for: Parents of young children on the spectrum
This was one of the first books I read when my son was diagnosed and I realized how little he actually knew about playing appropriately. This is a very positive book full of good ideas about how to develop your child’s play skills and also finding ways to connect with your child through play. If it’s a struggle to reach your child, you can try Moor’s various methods including physical methods like tickling, or singing, hand movements, rough and tumble play or sedate play. There are also explanations of how to structure play with goals like turn taking or with themes. Most of the common behavioral therapies are mentioned like ABA, TEACCH, and PECS. The author also covers appropriate toys and how you can use the typical toddler toys such as puzzles, games, imaginative play sets, water pay, music, crafts, and even TV, to create a fun learning experience. The author focuses on all the incidental teaching that can be done which is really what so much of parenting a child on the spectrum is all about. One thing to note, however, is that the author is from England and most of the resources mentioned are British. Moor usually lists an American equivalent resource.
Ory, Nathan. Working with People with Challenging Behaviors: A Guide for Maintaining Positive Relationships, Second Edition. (2007).
Appropriate for: Anyone working or living with someone with behavior issues
This is the closest book I’ve found to an instruction manual for my child. It’s the companion book to two-day program that Nathan Ory put on and its practical, realistic approach to handling a child who is anxious and volatile is very usable. I actually highlighted this book and reread it. Each chapter offers possible causes and patterns of behavior along with generative factors, prevention, guidance, training, and crisis management. The crisis management is one of the key features that sets his approach apart. With so many books focused on prevention, it can be disheartening and leave you frustrated asking, “What if I tried all of that and my kid still flips out? What do I do then?” This book answers those questions.
Ozonoff, Sally; Dawson, Geraldine; and McPartland, James. A Parent’s Guide to Asperger Syndrome and High-Functioning Autism: How to Meet the Challenges and Help Your Child Thrives. (2002).
Appropriate for: Parents of children who have symptoms of high-functioning autism, PDD-NOS, and Asperger’s of all ages. I think the best time to read this book is as your child is moving from preschool into the school system.
This book starts out with the usual definitions of the spectrum disorders and the diagnostic process. It also includes a short helpful section on how and when to tell your children about his or her autistic symptoms. There is a chapter on the causes of autism (the authors support the view that it is highly unlikely that the MMR vaccine causes autism). Treatment options are covered next, starting at the preschool level and moving up through to adulthood. A traditional assortment of treatments like ABA, TEACCH, social and behavioral interventions, is discussed as well as sensory integration, dietary treatments vitamin supplements (the authors site inconclusive evidence of effectiveness), and the all-important, but often-neglected, family support. Moving beyond just a laundry list of treatment options, the authors explain how to play on your child’s strengths to help him or her with challenging behaviors at home. This content includes information on determining what your child is trying to communicate with an undesirable behavior, how to substitute that behavior for a desirable one, and how to reward your child for good behavior. The authors give helpful tools and strategies on key issues such as how to cope with difficult times of the day at home. They also address options for school placement and how parents should go about determining which option is best and how to work with the district. The book goes into wonderful detail about the typical academic challenges these kids have from preschool on up through college and how best to address these challenges. The all-important social skills are addressed as well as the many ways in which they can be taught—in formal groups and more informally. There is also a chapter on young adulthood, touching on topics like whether or not to disclose the diagnosis, and the dreaded topics of sexual development, romantic relationships, self-esteem, as well as college, adult living arrangements, and employment. The authors acknowledge that much of what is known about adolescents is based on the late-diagnosed, not on the more recent generation of children who may have benefited from early intervention. Although all the tough topics are dealt with, the authors’ tone is gentle and sensible. This book is full of lots of examples of children of all ages and symptoms and the overarching positive tone is reassuring.
Schwartz, Sue, PhD. The New Language of Toys: Teaching Communication Skills to Children with Special Needs. (2004).
Appropriate for: Parents of young children on the spectrum
When Floor Time therapy was recommended for my son, this was one of the books I purchased. It if full of ideas for parents on how to stimulate language and increase play skills with popular toys and household items. There is a section on the development of language that is a helpful gauge to see where your child’s abilities are. This is book for children not just with autism, but it works well in that capacity. Some of the toys listed may not be currently available, but there is sure to be a current suitable substitute (blocks, bubbles, train sets, etc.). Chapters are broken down by age group through age 6. The lists at the end of each chapter provides an idea of the vocabulary and concepts that your child should be exposed to and familiar with at each developmental stage. There is also a useful list of children’s books and a chart for language, physical, and cognitive milestones at the end of each chapter. In addition, the author touches on incidental teaching and how much of that can happen during a relaxed play session.
Siegel, Bryna. Getting the Best for Your Child with Autism: An Expert’s Guide to Treatment. (2008).
Appropriate for: Parents of a newly diagnosed child
As soon as you see the red flags indicating that your child may be on the spectrum, this is the book to read. I wish I had been given this book after Dr. Siegel diagnosed my son with PDD-NOS. Reading it is like having a conversation in her office. She both poses and answers all the questions you thought of and remembered to write down and bring to the appointment as well as the ones you thought of in the car ride home. This is a book for parents, not therapists, so it thoroughly walks you through the assessment and diagnosis process, the impact a diagnosis has on your family, and how to start getting the treatment your child needs. Thankfully it repeatedly addresses that question that all parents perseverate on “How many hours of treatment does my child need?” Dr. Siegel equips parents to go out there and do what we’re all encouraged to do—become the expert on your child and put his or her program together. Extremely helpful is a chapter on the IEP process written by a Special Education lawyer. The book concludes with some very sound advice on creating peaceful, effective relationships with your child’s teacher and therapists. This is the book I’d read before Siegel’s The World of the Autistic Child (which parents just entering this world may find frightening). I’d follow it with Siegel’s Helping Children with Autism Learn.
Siegel, Bryna. The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders. (1996).
Appropriate for: Parents who have accepted that their child has autism
This book is not for the feint of heart. After our son with diagnosed with PDD-NOS by Bryna Seigel, my husband and I bought two copies of this book at the UCSF book store. I read one copy and gave the other copy to my mother and then we passed a copy along to my father in-law. It was a hard read for me at the time, but even so I appreciated its comprehensiveness and detail. As informative as this book will be for you to read, you may not want to pass this one on to concerned family members. You will learn so much while reading it—things that shell-shocked parents need to cope with, but grandparents shouldn’t have to. (For example, in the first few pages, you read that 80% of children with autism have some degree of mental retardation and about some of the causes of autism.) It’s a splash of cold water in your face after the diagnosis and it gets you up and ready to tackle the instant challenges you face. It’s also a rite of passage into a club in which you find yourself an instant member. Bryna Siegel is irrefutably an expert and this book is considered the bible on autism. I turn here when I want a clear, concise definitions of terms and an overview of all the autistic symptoms that all parents should know when they are communicating with the professionals who will help their children. It’s an easy book to read around in. Dr. Siegel takes you through the diagnosis process and the IEP process, and she covers all therapies. But it’s not all about the technical jargon and statistics. You’ll also find information on what parents feel after getting a diagnosis and how interpersonal relationships and the family dynamics will change. Dr. Siegel knows all the questions parents typically ask when they are confronted with a diagnosis and she attempts to answer them all. Some of the direct language makes me wince sometimes, but as many people who have met Dr. Siegel, including me, know, she doesn’t sugar coat things. That works for me because I want to hear it straight, but if you’re not ready, get this book and reach for it when you are. And again don’t give it to grandparents.
Simpson, Richard L. Autism Spectrum Disorders: Interventions and Treatments for Children and Youth. (2005).
Appropriate for: Parents of young children on the spectrum
For those who want a comprehensive, straightforward synopsis of all the current treatments and interventions, this is a wonderful resource. Treatments and interventions are organized into four broad categories: 1. interpersonal relationship; 2. skill-based; 3. cognitive, physiological, biological, and neurological; and 4. other. Information about each intervention is then broken down into age/ability level, description, reported benefits and effects, how outcomes related to utilization, qualifications of persons implementing, potential risks, cost, method for evaluating efficacy, and conclusions. Most interestingly, however, each treatment is then rated as one of the following: scientifically based; promising practice; practice for which there is limited supporting information; or not recommended (those shown to lack efficacy and that may have the potential to do harm). This is invaluable to the lay person sorting through the information. Once you get the basics from the book, you can follow up with the references and suggested readings.
Walton, Susan. Coloring Outside Autism’s Lines: 50+ Activities, Adventures, and Celebrations for Families with Children with Autism. (2010).
Appropriate for: Parents with young children on the spectrum
I wish I’d had this book five years ago when my son was preschool-aged. It’s a real-life manual written by a mother with an autistic son who explains that it’s okay not to force your child into every social situation because it just might not work for you. Not only does she give many good suggestions on where to take your child, but she is honest about the limitations and the huge amount of prep work it requires to take your child on excursions, no matter how close to home. She also touches on the touchy subjects of friends (old ones that you will have to let go of and new ones that you’ll have to find) and holidays (it’s okay to split up the family and break with long-held family traditions. Well-written and easy-to-relate-to, this book is a great one to pick up before a long holiday or summer break when you’re contemplating places to go and things to do.
Winner, Michelle Garcia. Thinking About YOU Thinking About ME: Philosophy and Strategies to Further Develop Perspective Taking and Communicative Abilities for Persons with Social Cognitive Deficits, Second Edition. (2006).
Appropriate for: Teachers and paraprofessionals, but parents can get a lot out if it too
This is not a program that parents can implement themselves at home without professional support, but if your child’s teacher or behavioral therapist is following this curriculum, it’s a great way to learn more or reinforce what you know. You might also be able to use some of the handouts or use the information within to prepare for an IEP meeting. As the author states, the mission of this book is to “focus exclusively on the ability to understand the perspective of others (more formally referred to as Theory of Mind).” This program helps children to more consciously “think, know, decide, and guess.” It teaches them to ask themselves, What do you know? What can you guess? And how can you solve the problem? An idea that parents can take away, which I really like is the “Me Binder” for older kids (middle school and beyond). A Me Binder includes a child’s schedule. It also maps out, in language that the child can understand, his or her goals, a plan for and how they are going to be met, and an explanation of every professional service or therapy received. There are even step-by-step instructions for working with each professional that your child can follow. I foresee that when my son, who is resentful if he has to do anything that he doesn’t think is relevant to him, get older, the Me Binder is going to be a very useful tool for our family.
