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Summary
Summary
Friendly, accessible guidance for parents of autistic children and people caring for autistic adults
Autism affects more than 1 million children and adults in the United States, and parents may be confused by the behavior of autistic children. This book provides help-and hope-by explaining the differences between various types of autism and delivering the lowdown on behavioral, educational, medical, other interventions. Featuring inspiring autism success stories as well as a list of organizations where people who support those with autism can go for additional help, it offers practical advice on how to educate children as well as insights on helping people with autism use their strengths to maximize their potential in life.
Stephen Shore , EdD (Brookline MA), serves on the board for several autism spectrum-related organizations and he has written Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome (1-931282-00-5) and edited Ask and Tell: Self Advocacy and Disclosure For People on the Autism Spectrum (1-931282-58-7).
Linda G. Rastelli (Middletown, NJ) is a veteran journalist who specializes in health and business.
Temple Grandin , PhD (Fort Collins, CO) is the author of the bestselling Thinking in Pictures (0-679-77289-8) and Emergence: Labeled Autistic (0-446-67182-7).
Author Notes
Stephen M. Shore, EdD, who was diagnosed on the autism spectrum, is a college professor and an international lecturer and consultant on autism.
Linda G. Rastelli, MA, is an award-winning writer with 20 years of experience writing about health, education, and business topics.
Table of Contents
Foreword | p. xvii |
Introduction | p. 1 |
About This Book | p. 2 |
Conventions Used in This Book | p. 2 |
What You're Not to Read | p. 3 |
Foolish Assumptions | p. 3 |
How This Book Is Organized | p. 4 |
Part I Understanding Autism | p. 4 |
Part II Addressing Physical Needs | p. 4 |
Part III Enhancing Learning and Social Skills | p. 5 |
Part IV Living with Autism as an Adult | p. 5 |
Part V The Part of Tens | p. 6 |
Icons Used in This Book | p. 6 |
Where to Go from Here | p. 7 |
Part I Understanding Autism | p. 9 |
Chapter 1 Autism: The Big Picture | p. 11 |
What We Know - and Don't Know - about Autism | p. 12 |
Making the Diagnosis: Learning Your ASDs | p. 13 |
Understanding the diagnostic criteria | p. 14 |
Seeing the signs: Autism symptoms | p. 15 |
Understanding the Far-Reaching Impact of Autism | p. 17 |
How autism can affect the diagnosed individual | p. 18 |
How autism can affect families, schools, and communities | p. 18 |
How autism can affect caregivers | p. 19 |
Navigating the Sea of Interventions | p. 20 |
Using behavioral, developmental, and other educationally based interventions | p. 21 |
Implementing occupational and speech-language therapies | p. 23 |
Medicating symptoms that can accompany autism | p. 23 |
Applying biomedical and natural interventions | p. 24 |
If You Think You (Or People You Care for) Have Undiagnosed Autism | p. 25 |
Chapter 2 From Classification to Treatment: Scanning the Autism Spectrum | p. 27 |
Surveying the Colors of Autism | p. 28 |
Severe (or "classic") autism | p. 29 |
PDD and PDD-NOS | p. 30 |
Asperger Syndrome | p. 31 |
Considering Conditions That Resemble Autism | p. 32 |
Childhood Disintegrative Disorder | p. 32 |
Attention Deficit/Hyperactivity Disorder | p. 33 |
Other possible diagnoses | p. 33 |
Understanding Why Early Treatment Matters More than Classification | p. 35 |
Attempting early identification and intervention | p. 35 |
Getting good medical care | p. 36 |
Enrolling in effective early programs | p. 37 |
Chapter 3 Causes, Clusters, and Clues: Where Does Autism Come From? | p. 39 |
Considering the Rise in Diagnoses | p. 40 |
Exploring the Genetic Link | p. 41 |
Familial patterns | p. 41 |
Brain size and structure | p. 42 |
The brain-gut connection | p. 44 |
The testosterone link | p. 45 |
Examining Biomedical Theories | p. 45 |
What do allergies have to do with it? | p. 46 |
Heavy-metal poisoning hypotheses | p. 47 |
Autoimmune or virus-induced theories of causation | p. 49 |
The Backlash Against the Cure | p. 50 |
Chapter 4 Getting a Diagnosis | p. 53 |
Tracking Your Child's Medical History | p. 54 |
Broaching the Possibility of Autism with a Doctor | p. 55 |
Preparing for the consultation | p. 56 |
Requesting a referral | p. 57 |
Consulting a Specialist | p. 58 |
Contacting a qualified specialist | p. 59 |
Sharing information | p. 62 |
Embarking on the assessment process | p. 62 |
Diagnosing related conditions | p. 65 |
Dealing with the Impact of the Diagnosis | p. 67 |
Coming to terms emotionally | p. 68 |
Taking action | p. 68 |
Avoiding scams | p. 69 |
Chapter 5 Asperger Syndrome and Autism | p. 71 |
Discovering Where Asperger Syndrome Sits on the Autism Spectrum | p. 72 |
Examining common characteristics of Asperger's | p. 72 |
Diagnosing Asperger Syndrome | p. 73 |
Examining typical nondiagnostic personality traits of Asperger Syndrome | p. 76 |
Helping People with Asperger Syndrome Socialize | p. 78 |
Finding the hidden curriculum | p. 79 |
Handling idioms and figures of speech | p. 80 |
Dealing with the Emotions Triggered by Asperger Syndrome | p. 82 |
Avoiding the rage cycle | p. 83 |
Working through frustration | p. 87 |
Using emotion thermometers to gauge emotional states | p. 87 |
Recognizing Bullying and Its Emotional Repercussions | p. 89 |
Signs of bullying | p. 90 |
Taming the bullies | p. 91 |
Transitioning to Adulthood | p. 91 |
Part II Addressing Physical Needs | p. 93 |
Chapter 6 Injecting Yourself with Knowledge about Autism Medication | p. 95 |
Considering Drug Therapy | p. 95 |
Looking at how medication can realistically help | p. 96 |
Educating yourself and pursuing drug therapy | p. 96 |
Using medication wisely | p. 97 |
Identifying Helpful Medications | p. 99 |
Beginning the process with a qualified doctor | p. 100 |
Selective Serotonin Reuptake Inhibitors (SSRIs) | p. 101 |
Atypical antipsychotic drugs | p. 102 |
Tricyclic drugs | p. 104 |
Antiepileptics (also known as anticonvulsants) | p. 105 |
Medications for challenging behaviors in severely affected people with autism | p. 106 |
Maximizing Safety When Vaccinating Your Child | p. 107 |
Considering your child's medical history | p. 107 |
Looking at an alternate vaccination schedule | p. 108 |
Chapter 7 Improving Immunity and Boosting Biochemistry | p. 109 |
Taking a Look at the Balancing Act of the Immune System | p. 110 |
Exposing the Relationship between Autism and Immune Abnormalities | p. 112 |
Analyzing immune measurements in the blood | p. 113 |
Exploring gut problems | p. 114 |
Studying brain tissue | p. 115 |
Improving Immunity | p. 116 |
Focusing on first-line fundamentals | p. 117 |
Seeking out second-line strategies | p. 118 |
Tackling third-line therapies | p. 119 |
Biochemistry Begets Behavior: A New Way of Thinking | p. 121 |
Shedding light on the broken pathways | p. 121 |
Maximizing metabolism | p. 122 |
Getting the Lead (and Mercury) Out | p. 124 |
Why the autistic child? | p. 124 |
Testing for toxicity | p. 125 |
Chelating | p. 125 |
Chapter 8 Optimizing Nutrition | p. 129 |
Tempering Your Expectations | p. 130 |
Considering Your Dietary Intervention Options | p. 130 |
Cleaning up your child's diet | p. 131 |
Going wheat and dairy free | p. 133 |
Supplementing your child's diet | p. 136 |
Implementing Your Plan | p. 138 |
Keeping a food and symptom diary | p. 138 |
Involving professionals | p. 140 |
Easing the transition | p. 141 |
Experimenting with specialized diets | p. 142 |
Eating on the road | p. 143 |
Part III Enhancing Learning and Social Skills | p. 145 |
Chapter 9 Choosing an Appropriate Behavioral, Developmental, or Educational Intervention | p. 147 |
Understanding What to Look for in the Alphabet Soup of Approaches | p. 148 |
Actions and behaviors that lead to success in all interventions | p. 149 |
Keys to success in educational interventions | p. 149 |
Exploring Popular Intervention Approaches | p. 150 |
Applied Behavioral Analysis (ABA) | p. 151 |
Daily Life Therapy (DLT) | p. 155 |
Developmental Individual Difference Relation-Based Intervention (DIR) | p. 157 |
Miller Method | p. 160 |
Relationship Development Intervention (RDI) | p. 164 |
Treatment and Education of Autistic and Communication Handicapped Children (TEACCH) | p. 169 |
Social Communication Emotional Regulation Transactional Support Model (SCERTS) | p. 173 |
Deciding Which Method Is Best for Your Child | p. 176 |
Financing the At-Home Program of Your Choice | p. 177 |
Exploring your at-home options | p. 177 |
Obtaining government assistance | p. 178 |
Chapter 10 Dealing with Learning and Sensory Differences | p. 181 |
Autistic Learning: Transferring Skills and Providing Structure | p. 182 |
Thinking conceptually and transferring concepts | p. 182 |
Incorporating routine into daily life | p. 184 |
Bridging the Communication Gap | p. 186 |
Developing sign language as a communication bridge | p. 186 |
Working toward functional communication | p. 186 |
Using assistive communication technology | p. 187 |
Enjoying music therapy | p. 193 |
"Retraining" the Brain through Neurotherapy | p. 194 |
Examining and implementing neurotherapy | p. 195 |
Reviewing a neurotherapy study | p. 196 |
Making Sense of Sensory Confusion | p. 197 |
Observing sensory integration challenges | p. 197 |
Using hippotherapy | p. 200 |
Working with speech-language pathologists | p. 200 |
Seeing through Irlen-branded lenses | p. 201 |
Handling Your Child's Sensory Issues | p. 202 |
The supermarket test | p. 202 |
The eyes have it | p. 203 |
The auditory-processing blues | p. 204 |
Socially unacceptable stimming | p. 204 |
Dealing with the most severe behaviors | p. 206 |
Chapter 11 Finding a Learning Environment That Fits Your Child's Needs | p. 207 |
Inclusion: To Be or Not to Be? | p. 208 |
Recognizing an Effective Classroom | p. 209 |
Maintaining routine and predictability | p. 209 |
Learning through all the senses | p. 211 |
Evaluating the room itself | p. 212 |
Observing a Good Teacher | p. 215 |
Characteristics to look for in an educator | p. 215 |
Warning flags to avoid in an educator | p. 216 |
Developing Effective Accommodations | p. 217 |
Accommodations in action | p. 218 |
Addressing the fairness of accommodations | p. 219 |
Considering educational techniques for promoting inclusion | p. 222 |
Weighing Your Options when the Public School System Falls Short | p. 224 |
Exploring the world of home schooling | p. 224 |
Considering other educational options | p. 226 |
Understanding and Reducing Challenging Behaviors | p. 226 |
Getting to the core of the behavior | p. 227 |
Performing a Functional Behavioral Assessment (FBA) | p. 227 |
Chapter 12 Legally Speaking: Making the Most of Your Child's Education | p. 235 |
Navigating the Legal and Education Systems | p. 235 |
Understanding what the law allows | p. 236 |
Keeping track of changes in the law | p. 236 |
Staying Involved with Your Child's Education | p. 238 |
Working within the system | p. 238 |
Supporting your child at home | p. 239 |
Acting Early with an Individualized Family Service Plan (IFSP) | p. 240 |
Specifying Special: Entering the Public School System | p. 241 |
Initiating an evaluation to establish eligibility | p. 241 |
Implementing an Individualized Education Program (IEP) | p. 243 |
Assessing Your Child's Progress | p. 250 |
Flexing Your Educational Rights When You Need To | p. 251 |
Chapter 13 Fostering Healthy Relationships | p. 253 |
Recognizing the Social Challenges an Autistic Child Faces | p. 254 |
Understanding social norms | p. 254 |
Conversing and cooperating | p. 255 |
Supporting a child when verbal communication is minimal or nonexistent | p. 256 |
All in the Family | p. 258 |
Talking about autism with your kids | p. 259 |
Considering the challenges siblings face | p. 260 |
Including extended family | p. 263 |
Encouraging Your Child to Form Friendships | p. 264 |
Staging an emotional rescue | p. 265 |
Creating social stories and calling on Power Cards | p. 266 |
Making conversation | p. 268 |
Sparking interactive play | p. 269 |
Respecting differences | p. 270 |
Part IV Living With Autism as an Adult | p. 271 |
Chapter 14 For Adults with Autism: Living Well after K-12 | p. 273 |
Discovering How to Live Interdependently | p. 274 |
Managing your daily life | p. 274 |
Deciding where to live | p. 275 |
For caregivers: Preparing your dependent to succeed from day one | p. 276 |
Out of the High-School Daze: Pursuing Higher Education | p. 277 |
Evaluating your educational options | p. 278 |
Getting the accommodations you need for higher education | p. 282 |
Practicing self-advocacy and disclosure | p. 283 |
Easing into higher education | p. 284 |
For caregivers: Helping your dependent realize his/her higher-education dreams | p. 285 |
Time to Nurture Your Bank Account: Finding (and Keeping) Employment | p. 285 |
Matching your skills and desires with job opportunities | p. 286 |
Working with a job coach | p. 287 |
Applying for and obtaining a position | p. 288 |
Maintaining your job | p. 291 |
Gracefully exiting your position | p. 291 |
Considering self-employment | p. 292 |
For caregivers: Helping a dependent find employment | p. 293 |
An Advocate Off the Ol' Block: Getting Involved with Your Community | p. 295 |
Becoming a part of your community | p. 296 |
Looking within the autism community | p. 297 |
For caregivers: Encouraging an adult with autism to get involved | p. 299 |
Chapter 15 For Adults with Autism: Fostering Friendships and Romantic Relationships | p. 301 |
Developing Friendly Relationships | p. 302 |
Understanding the circle of relationships | p. 302 |
Making first contact | p. 304 |
For caregivers: Helping your dependent establish friendships | p. 306 |
Recognizing (And Overcoming) the Challenges of Dating | p. 307 |
Asking for a date | p. 307 |
Behaving appropriately during the date | p. 309 |
Opting for full or no disclosure | p. 310 |
For caregivers: Moving on to dating | p. 311 |
Taking It to the Next Level with Sexual Behavior | p. 312 |
The most important part of boyfriend or girlfriend is "friend" | p. 313 |
Engaging in sexual activity | p. 314 |
For caregivers: Exploring sex education for people with autism | p. 315 |
Chapter 16 Special-Needs Planning for the Future | p. 319 |
Avoiding Common Financial Mistakes | p. 320 |
Putting Plan to Paper: Getting Started | p. 320 |
Taking account of your child's prognosis | p. 321 |
Keeping eligibility for government services in mind | p. 322 |
Sizing up your estate | p. 323 |
Considering living arrangements and guardianship | p. 323 |
Involving an Attorney and/or Financial Planner | p. 323 |
Writing Your Will | p. 325 |
Setting up a special-needs trust | p. 326 |
Giving a morally obligated gift | p. 330 |
Designating guardianship | p. 331 |
Part V The Part of Tens | p. 333 |
Chapter 17 Ten Tactful Responses to Challenging Questions or Comments | p. 335 |
"What Special Talent Does He Have?" | p. 335 |
"Why Can't You Control Your Kid?" | p. 336 |
"Asperger Snausperger. He Looks Fine. He Just Needs a Better Attitude" | p. 337 |
"Who Did He Inherit It From?" | p. 337 |
"Why Should Your Child Get Special Treatment?" | p. 338 |
"Are You Kidnapping That Child?" | p. 338 |
The "Bad-Parent" Look | p. 339 |
"Is She Still in Her Own World?" | p. 339 |
"They Grow Out of It, Don't They?" | p. 340 |
"But She Doesn't Look Autistic..." | p. 340 |
Chapter 18 Ten Things to Do after a Diagnosis | p. 341 |
Learn and Read as Much as Possible | p. 341 |
Network with Other Families | p. 342 |
Test, Test, Test | p. 342 |
Investigate Sources of Financial Aid | p. 342 |
Consider Major Lifestyle Changes | p. 343 |
Set Up an Educational/Behavioral Program in Your Home | p. 343 |
Begin Therapies | p. 343 |
Address Your Child's Diet and Nutrition | p. 344 |
Don't Give Up | p. 344 |
Get Out and Relax | p. 344 |
Appendix Where to Go for More Help | p. 345 |
Finding Other Helpful Texts | p. 345 |
Specializing in autism spectrum disorders | p. 347 |
Special-education publishers | p. 347 |
Research journals and magazines | p. 348 |
Surfing Informative Sites on the Web | p. 348 |
Connecting with advocacy organizations | p. 349 |
Perusing general-information sites | p. 350 |
Having some fun | p. 351 |
Gaining insight from people with an ASD | p. 351 |
Chatting about autism | p. 352 |
Exploring listserves | p. 353 |
Accessing World-Wide Autism Organizations and Resources | p. 354 |
Index | p. 355 |