You must make time to read Thinking Person’s Guide to Autism edited by Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham and Carol Greenburg. Fifty-five essays written by contributors from the autism community in all walks of life. Thinking Person’s Guide to Autism is a book that covers many issues that parents of children with Autism Spectrum Disorder (ASD) encounter. It is a book to be enjoyed by not only the autism community but by everyone. This collection of stories was written by autism parents about the ups and downs they experience every day. Some are written by professionals who care for and counsel autistic children and others are by autistics themselves who bared their souls so others will understand.
Thinking Person’s Guide to Autism is the book all these contributors wished they had years ago. Buy this highly recommended book and your journey will be made easier. Keep this book handy to reread a favorite essay. Also with its comprehensive index, you can identify and locate important information for quick reference.
Steve Siberman investigative reporter for Wired wrote, “Thinking Person’s Guide to Autism is bracingly free of dogma, heavy-handed agendas, and pseudoscientific woo. What distinguishes it from, say, the fine guide for parents recently made freely downloadable by the National Autism Center, is the heart, soul, fierce intelligence, and subversive wit of the authors and editors, which shines on every page.”
This is part 2 of my review and part 1 is here.
Every essay touched my heart. I want to share a few sentences that grabbed my attention from each essay. This post has excerpts from the last six chapters, see part 1 for excerpts from the first three.
Chapter 4 Therapies and Service Providers
What a Great Speech-Language Pathologist Can Do for Your Child with Autism ~ Jordan S. Sadler, M.S., CCC-SLP Calibri The SLP is the cornerstone of the therapeutic team. A good speech-language pathologist will make a significant difference in your child’s life. To a speech-language pathologist, nonverbal communication should be at least as important as verbal language.
What Is Applied Behavior Analysis, and Why You Want a Behavior Analyst on Your Child’s Team ~ Michelle Hecht, M.A., BCBA These days it is generally accepted that behavior is impacted greatly by both biological and environmental factors. A behavior analyst will help you to clearly define the strengths and learning needs of your child. If your child has autism he is experiencing significant challenges in the three general areas: language, social communication, and restricted interests/repetitive behaviors.
DIR®/Floortime™: An Introduction ~ Sara Chapman M.A. The DIR® Model, or Developmental, Individual-Differences, Relationship-based Model, is an interdisciplinary framework for assessment and intervention developed by Drs. Stanley Greenspan and Serena Wieder. It is used to guide parents and professionals in designing a program tailored to each child’s unique strengths and challenges to support developmental progress.
What to Ask of an Occupational Therapist ~ Barbara H. Boucher, OT, Ph.D., PT. First request-suggestion: Please show me how to help my child live comfortably in our home with our family.
Autism Service Dogs ~Sarah Low Dogs in general require a lot of care and on-going maintenance; dogs that are specially trained to work require even more. And having a child or children on the autism spectrum is itself a ton of work, so just remember that while potentially being of great benefit, a service dog will add to your workload.
An Open Letter to Special Needs Professionals ~ Pia Prenevost A lovely heartfelt letter…Some of “us” parents…the “special” ones…can be a pain in the ass. I know that. We know that. But we are fighting a fight we never planned to fight, and it doesn’t end.
Why I Can’t Breathe Tonight ~ Anonymous Special Needs Professional ( This is exactly how I, Lorna, have felt while teaching) But when parents come in armed and ready for things to be wrong and for professionals to be incompetent, the professionals are demeaned on day one and left to play defense in a game no one taught them in college and that no one will win. We professionals may not physically take your children home with us, but in a lot of ways we take them—and their parents—home emotionally, every day and (apparently, in my case) years later. Both the joys and the stresses of the job affect our personal lives and our own family’s lives. I implore parents and professionals alike, on behalf of those who work in public schools, to please make an effort to give each other the benefit of the doubt, some support, a little credit, and as much gratitude as we can possibly muster.
Chapter 5 Causation Theories and Dubious Therapies
When a Mom Says Something Works: The GFCF Diet ~ JoyMama The core reasons that we need science is to help us distinguish between real effects and rose-colored glasses. But as both the Pediatrics consensus paper and a systematic review in the July 2010 issue of Research in Autism Spectrum Disorders demonstrate, right now there is not enough evidence to recommend the GFCF diet as a primary treatment for autism, and there is no current proof of the existence of autistic enterocolitis.
Coming to Terms ~ Kev Leitch We had given the GFCF diet the time it was recommended we should do for it to begin to work, and nothing had happened. Nothing at all. After I felt foolish, I began to get angry. Angry at myself (as well as guilty as to what I had insisted we put Meg through), angry at some of the parents on the biomed forum I attended, and above all, angry at those who were not just “researching” this treatment but making a hell of a lot of money from it.
Autism and Environmental Chemicals: A Call for Caution ~ Emily Willingham I advocate for simply doing the best we can to remove these compounds from the environment or at least to stop contributing them. Whether they are a factor in autism or not, they’re patently not safe for developing vertebrates, and we should be addressing that.
Questionable Autism Approaches: Facilitated Communication and Rapid Prompting Method ~ Kim Wombles Both Facilitated Communication and Rapid Prompting Method are unsubstantiated… The American Academy of Pediatrics (AAP) (1998) provided the following statements regarding FC in the journal Pediatrics: “Many families incur substantial expense pursuing these treatments, and spend time and resources that could be used more productively on behavioral and educational interventions….”
How I Know Vaccines Didn’t Cause My Child’s Autism ~ Devon Koren Alley I never suspected vaccinations as the cause of Aisling’s autism. And all of these things started from the first day I held her in my arms at the hospital, long before any vaccinations, long before she was exposed to anything. …so caught up in trying to determine the cause and hoping that it leads to a “cure” that we pull much- needed services, therapies, and research that help assist autistic individuals interact with this loud, confusing world.
Autism and Biomed Protocols: A Primer on Pseudoscience ~ Emily Willingham and Kim Wombles Understanding what constitutes pseudoscience versus true science or scientific practice will help you avoid a number of biomed pitfalls. What has not been demonstrated in any way—and could not be, even if we moved Heaven and Earth to do so—is that these peddled protocols, along with affiliated books and pills, have any effect whatsoever. All they ultimately do is take money from the pockets of parents desperate to do something for the children they love.
Why My Child With Autism Is Fully Vaccinated ~ Shannon Des Roches Rosa You should also know that Andrew Wakefield, the researcher who launched the autism–vaccine panic via a 1998 press conference, had his related research formally retracted and his medical license taken away. … some people make critical health decisions for their children based on the opinions of celebrities rather than pediatricians. I’m asking you to help right the balance, to ensure that science-based viewpoints counter earnest but misinformed sensationalism in the autism— and parenting—communities’ information flows.
Chapter 6 Acceptance & Inclusion from the Parent/Neurotypical
The Autism Path ~ Jean Winegardner Everyone’s path is hard. Everyone has to struggle up and down the trail on which we have embarked. We struggle over the uneven ground. We continue to find ways to help our kids avoid the most difficult pitfalls.
I Want to Tell You a Secret About Autism Awareness ~ Shannon Des Roches Rosa Behavior is communication. That’s it. That’s all. That’s everything. Hyperfocus on what your child does, and why they do it. Decide which quirks are quirky, and which are legitimate impediments to learning, self-care, health, and socialization—then put your energies into helping your child get past the roadblocks.
Buying Hope ~ Jennifer Byde Myers If the therapy, device, or supplement says it treats autism and several other things ranging from dyslexia to ADHD to sleep apnea, look more carefully, and make sure it’s really what your child needs.
The Keeper: A Tale of Late-Childhood Asperger’s Diagnosis ~ Mir Kamin He just…it’s like all his friends are growing up and he’s still five. He can read on a high school level but he can’t cope with the most basic of social interactions without ending up convinced that everyone hates him.For kids with Asperger’s who are socially inclined it’s actually worse than for the kids who are happy on their own, because they want to be part of the gang and they just…can’t. You need to be prepared for that.
All His Base Are Belong to Him ~ Susan Senator What good does the diagnosis do in some of our children? Changed his childhood into one with services and therapies, with assessment and appointments. If that’s what’s needed, okay. But I am here to say, don’t let the label change how you see your child. It’s just words.you see your child. It’s just words.
The Crucial String ~ Liane Kupferberg Carter Disability seeps into all the cracks, the corners, of one’s life. It becomes the emotional center of the family. How do you do it? I am often asked. I give the same answer each time. I wasn’t given a choice. I just do it, one foot after the other. I have to be his advocate, because as wonderful as the therapists and teachers are, they go home every night. We are his ultimate teachers, the ones who are in it for the long haul. There’s nothing particularly noble about it. We do it because it has to be done.
Meeting Maddy ~ Jennifer Byde Myers Maddy quietly said to me, “I hope no one makes fun of him, ever. When I was younger I couldn’t see out of one of my eyes and people made fun of me.”
Chapter 7 Autism—Adult Voices
What I Want People to Know ~ Corina Lynn Becker For me, the rising autism rate represents a rising rate in awareness and knowledge and a hope that fewer and fewer children will be mis-, under- and un-diagnosed, until not one child slips through the cracks. I do not want them to suffer even a fraction of the damaged self-esteem, heart-broken pain, overwhelming confusion, exhaustion, and self-loathing that I clawed through.
Grieving the Dream and Living What Is ~ Rachel Cohen-Rottenberg I have been bullied, and ignored, and left behind, in many different ways, all my life. And yet, I don’t wish I were different. I wish the world were different… I wish that more people were sensitive to all the things that autistic people need in order to live our lives with more joy and less fear, more inclusion and less loneliness.
Being Employed With Asperger Syndrome ~ Michael V. Drejer In my experience, under optimal working conditions, an Aspie will work harder, faster, and better than just about any “neurotypicals” or NTs out there, out of sheer loyalty and personal perfectionism. The feeling I get when I go home from work, knowing that I have done a good job, made a difference, and contributed to business life as a professional, and getting paid and recognized for my work, is incredible.
Reflections on Mature Autism ~ Rory Patton I think we should be designing a world that is a good place for people with autism to live in. We should be finding the best ways to lessen the undesirable symptoms and we should not allow orthodox science and logic to close our minds to the possibility that alternative therapies may help some people.
So What’s the Fascination With Autism and Sex? ~ Lindsey Nebeker What we can’t deny, however, is that individuals with autism and developmental disabilities go through puberty, experience hormonal changes, become curious about their own bodies, and are sexual creatures by nature—just like anyone else.
Why Closed Captioning Isn’t Just For Deaf People ~ Sandy Yim But now that I have closed captioning, a whole new world has been opened up to me. I’m able to read very quickly and process several words at once, so I can keep up pretty well with dialogue. There are so many people with invisible disabilities out there who need that text badly.
For the 85 Percent of Us Who Can’t Work ~ Clay In being able to remain employed, through about fifty different jobs, I now realize that I beat some long odds. … I know that not having a job when you know that you could work under the right conditions, is just downright depressing.
Chapter 8 Autism—Parent Voices
Shifting Focus: Eight Facts About Autism the Media Is Not Covering ~ Holly Robinson Peete I feel compelled to shed light on the fact that families affected by autism are struggling on multiple levels. Bottom line is treatment is completely and ridiculously unaffordable… the fact is so many likely will never be “recovered” and nothing, I mean nothing, makes a parent feel more guilty than thinking you could’ve “fixed” your kid but—well you didn’t or couldn’t afford to.
(Extra) Ordinary Days ~ Kristen Spina We inched our way forward through his toddler and kindergarten years, working in tandem with our school district and trusting in the experience of his therapists and teachers. What all this has taught me is that—for us—there is no one thing. No one strategy or approach or end-all plan to fix things.
The Miracle by the Lobster Tank ~ J. Lorraine Martin I’ve come to understand that autism, just like many major life challenges, isn’t an all-or-nothing battle, stuck in the belief that if you don’t find the cure, you’ll never find contentment; there’s a whole lot of terrain to explore in between those polar extremes.
Teamwork ~ Kim Leaird I still had yet to learn that when you’ve met one child with autism, you’ve met one child with autism—even identical twins. The connection John has with Sam makes me believe that he will be okay, that they will look out for each other, and that one day, John will straddle both worlds—even while I recognize that he’ll never completely leave one.
Moving Day: Transitioning to a Group Home ~ Laura Shumaker It became clear that Matthew was no longer safe in the community where he had grown up, and his impulsive actions were putting others in peril. He would be living in an apartment near the community with a “roommate” hired by the Camphill program, one who could assist Matthew with daily living activities, personal financial affairs, and help involve him in community life.
Tree ~ Shawn C. Graves I have to remind myself not to confuse Tree’s confusion and pain for disobedience or defiance. I am still learning that my John Wayne (tough-as-nails, my- way-or-the highway) parenting philosophy I use on my own kids doesn’t work here, at all. This is where I need to change, not Tree.
Chapter 9 School and Education Issues
Living the Least Dangerous Assumption ~ Kate Ahern Ignore the nay-sayers and negative people who see every student action through the lens of the lowest possible level of understanding. See strengths: What can they do? How can you shape what they can do? How can you better understand why they do what they do within the assumption of competence?
Special Ed 101 ~ Kristina Chew What services your child needs will first be based on the evaluations of your child. Once your child has started receiving services, there should be clearly stated criteria about accessing your child’s learning and provisions made for what to do when your child is not progressing. .
Choosing a School for Children on the Autism Spectrum ~ Kristina Chew The right school has nothing to hide, and is open about you visiting, asking questions, and making inquiries and even suggestions. … making sure that your child has the education she or he needs to achieve her or his full potential, to learn and to grow, and to lead a good life.
Autism, An Equal Opportunity Disorder ~ Frances Vega-Costas Quite simply, providers who are respectful of and responsive to the beliefs, practices, and cultural and linguistic needs of diverse consumers can help bring more positive outcomes.
Writing Effective IEP Goals and Objectives: Suggestions for Teachers and Parents ~ Daniel Dage Success is everyone’s goal, but monitoring and measuring it is the job of the teacher. Objectives/ goals are supposed to be well- defined and measurable.
Rotten Food, Lousy Service: Dodge the Restaurant Mentality to Get Your Kids the Services They Need ~ Carol Ann Greenburg Our kids’ minds and spirits need appropriate, completely individualized services just as urgently as their bodies need food. Putting him, his individual interests, and personality first was not only more respectful…
The “R” Word Revisited ~ Brian R. King, LCSW (regarding a letter Brian wrote to his neighbors) It would seem that the letter instilled a little self-awareness and accountability in the parents without specifically pointing fingers. Far more damaging to have your child be excluded and bullied because you’ve allowed the neighbors to remain uninformed and ill-equipped to interact with your child.
What Is an Appropriate Education for Autistic Children? ~ Katharine Beals, Ph.D . What ASD children need, in other words, are not just supports for and modifications of existing assignments, but a wholesale replacement of many of these assignments by alternative assignments and learning opportunities that are specifically tailored to their strengths and weaknesses.
Inclusion: Make It an Open Classroom Discussion ~ Diane Levinthal Kids need to know that included classmates are not “out of step on purpose”! Regular education peers need roadmaps and information, and their included classmates can provide them. Regular education peers are more helpful and more understanding when they know what the heck is going on with a classmate.
The Inclusion Dance~ Susan Etlinger But there is no workable option here, and at the end of the day, he’s back in the rest of the world, which is not filled with wiggle chairs and chewies and people who appreciate his quirks. And we have to teach him to live in the world we live in, not the world we wish we lived in. It breaks my heart.
Creating a Special Education PTA ~ Jennifer Byde Myers So we made SEPTAR district-wide, including any family with a child with special needs, from Early Start (age three) through eighth grade. We also reached out to teachers, therapists, staff psychologists, and community leaders. With a little organized structure, our PTA provides resources, camaraderie, and the opportunity to come together as one community.
The teacher in me wants to shout out < A+ > for all these essays and congratulations for this outstanding book! Steve Silberman, investigative reporter for Wired and other national magazines, declared Thinking Person’s Guide to Autism his Book of the Year… now you know why.
Psst…may I add that our KidCompanions Chewelry made it in Thinking Person’s Guide to Autism‘s list of Supplies, Materials, and Gear on their resource pages.
Read bio’s of the editors HERE.
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