Book of the Year: Thinking Person’s Guide to Autism

Leo Rosa in Disneyland

Leo Rosa visits the Magic Kingdom, 2011. Photo by Mike Des Roches.

A sea-change is happening in the world of autism. Just a few years ago, the loudest voices in media coverage of the issue were those of Jenny McCarthy’s “warrior moms,” defending Andrew Wakefield’s now-discredited claim that the combined measles-mumps-rubella vaccine causes autism, while spending hard-earned income on the latest cure for their “vaccine-injured” kids — which could allegedly be found in megadoses of vitamins, chelation therapy to remove heavy metals like mercury from the body, elaborate elimination diets, home hyperbaric chambers and saunas, and untested gray-market drugs.

It’s not hard to understand what motivated these parents: Intense love and concern for their children, along with healthy skepticism of corrupt multinational corporations and government agencies that have proven themselves fully capable of covering up crimes against humanity that resulted in the injury and death of thousands. The mothers and fathers of kids on the spectrum have excellent reasons to distrust the medical establishment — notably its unquestioning acceptance of Bruno Bettelheim’s “refrigerator mother” theory in the 1950s, which cruelly blamed parents for their kids’ developmental disorders, adding shame and stigma to the challenges of raising an autistic child.

Bruno Bettelheim

Psychiatrist/author Bruno Bettelheim, whose bestselling books blamed a generation of mothers for their children's autism.

Bettelheim’s Freudian claptrap was consigned to the dustbin of pseudoscience long ago – fittingly, by the father of an autistic boy, a Navy psychologist named Bernard Rimland, who surgically dismantled Bettelheim’s imperious nonsense in his own book in 1964, establishing autism as primarily a genetic and organic, rather than psychogenic, condition. A tireless networker, Rimland also founded the National Society for Autistic Children to speed parents’ access to treatments that he felt showed promise. By doing so, he anticipated the self-empowerment of citizen scientists in the digital age.

Unfortunately, Rimland — who undertook Herculean efforts to make his own son, Mark, “normal,” as he put it — was also one of the first parent-advocates to promote Wakefield’s 1998 case series in The Lancet linking autism to vaccines. That study has since been found to have been an elaborate fraud by the British Medical Journal, disowned by its co-authors, and retracted by The Lancet. But the seeds of panic it sowed among a generation of parents are now sprouting all over the world in resurgent epidemics of childhood diseases like the measles and whooping cough, after being kept in check for decades by vaccines. Meanwhile, many of the biomedical treatments championed by Rimland have turned out to be no more effective than placebo or outright dangerous, as well as punishingly expensive for families financially stressed to the limit.

With greater understanding and another decade of research, talk of “curing” autism is fading away, though no one should dispute the need to find more effective treatments for seizures and other physical co-morbidities that some autistic people experience. Instead of obsessing about causes and cures, however, a new generation of parents is proposing something radical: loving their kids just as they are, in all their flamboyant eccentricity, the product of a distinctive kind of human wiring that likely lasts a lifetime. (Even Rimland’s loyal successor at the Autism Research Institute in San Diego, Stephen Edelson, said in a recent interview, “If a practitioner claims to ‘cure’ autism, run in the other direction.”) Instead of inspiring hopelessness, this shift has liberated many parents to embrace and even celebrate their kids’ differences, while focusing on the real challenge of helping them build healthy, happy, and independent lives in a society that provides shamefully few supports, resources, and accommodations for autistic adults.

That’s the message of several groundbreaking books and films in recent years, including Roy Richard Grinker’s Unstrange Minds, Paul Collins’ Not Even Wrong, Thomas Anderson’s Neurodiversity, Priscilla Gilman’s The Anti-Romantic Child, Tom Fields-Meyer’s Following Ezra, and Todd Drezner’s inspiring documentary Loving Lampposts.

At the same time, technological advances like the Internet and social media, text-to-speech software, visual computing, and mobile devices are opening up ways for people on the spectrum — including many who would have been written off as non-verbal or “low-functioning” in previous eras — to boldly speak out on behalf of themselves and their community. It turns out that autistic self-advocates have a lot to say about how they’ve been stereotyped, marginalized, overlooked, and demeaned by so-called neurotypical culture — even by organizations that claim to speak for them. Two of the most powerful pieces of online writing I read this year were by self-advocates whose view of their own lives is informed by the social model of disability: Julia Bascom’s “Quiet Hands” and Rachel Cohen-Rottenberg’s “The Path That Chose Me.” Self-advocates like Bascom and Cohen-Rottenberg proudly own their autistic behavior and atypical cognitive styles, casting light on the ways that monolithic concepts of normalcy oppress everyone who doesn’t fit the mold.

With this sea-change in mind, my favorite book of the year on autism was curated and self-published by a group of parent-warriors with the express purpose of sparing other parents the grief, isolation, and confusion that followed their own kids’ diagnoses. Called the Thinking Person’s Guide to Autism, it offers helpful, positive, pragmatic, evidence-based advice for making the life of your kid and your family more rewarding and more joyful, starting today. I can’t think of a better holiday gift for someone with a loved one on the spectrum. With current estimates of autism prevalence running at 1 in 110 people in the US, the book deserves a wide readership.

cover, Thinking Person's Guide to Autism

Thinking Person's Guide to Autism

Covering a wide range of nuts-and-bolts subjects — from strategizing toilet training and and planning fun family outings, to helping your kid cope with bullying, to identifying the issues that a skilled speech-language therapist can work on with your child, to spotting and avoiding “autism cults,” to navigating byzantine special-needs bureaucracies and providing your child with appropriate assistive technology, to fighting for your kid’s right to an individualized education — the 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. Offering observations from parents, professionals, and autistics themselves, the book is a welcome dose of optimism and uncommonly good sense.

Many guidebooks for the parents of autistic kids are dry, clinical, and relentlessly grim; by contrast, this book is about real families facing ordinary situations with grace, grit, and humor. Editors Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham, and Carol Greenburg are prolific bloggers and tweeters on the war-torn autism frontier every day: battling misinformation and quackery, standing up for science and evidence-based medicine, and crucially, building mutually beneficial alliances between parents and self-advocates. Their message is: We’ve been there. We know. And we want to help you become your kid’s most powerful ally while respecting and celebrating his or her unique identity.

There’s also a cheeky irreverence to the tone of the essays — many of which originated in the blogosphere — that is utterly refreshing. I can’t think of another book on the subject that would include the statement, “Children with autism are well known for masturbating in public. (And who can blame them?)”

TPGA editors Shannon Des Roches Rosa and Jennifer Byde Myers

TPGA editors Shannon Des Roches Rosa and Jennifer Byde Myers.

“My son Leo is 11 and has high-octane autism,” says Des Roches Rosa when I ask her about the genesis of the project. “I’d been blogging about parenting and autism since 2003 and writing columns as BlogHer’s contributing editor for parenting kids with special needs for a year. The reactions to my posts had been great, but I remained frustrated by the amount of negativity and flat-out misinformation pervading the Internet and traditional publishing, and worried about a constant stream of people entering the autism communities and getting misdirected or outright hoodwinked. I’d been ranting about it for a while, and so had Jennifer and Liz, so one day we just said, ‘Fuck it, someone has create a one-stop, comprehensive, evidence-based autism handbook, with perspectives from autistics, parents, and professionals.’ So we took the plunge.”

The book doesn’t make light of the diligent work required to make the world a more comfortable, supportive, and joyful place for atypically developing kids, while helping them cope with the stresses and sensory challenges that are an inevitable part of life on the spectrum. But it also makes clear that one of the toughest things to deal with as a parent is the pervasive view of autism as a tragedy. The deeply networked science-and-tech-literate parents who put the book together have happy children who are respected and treasured for being who they are, rather than pitied as unwitting victims of a Big Pharma conspiracy. (That was cherubic Leo Rosa rocking the iPad in a clip played at Steve Jobs’ last keynote).

Leo Rosa and his iPad

Leo Rosa loves his iPad.

“You will think you can’t handle it. You will be wrong,” writes Jess, one of the book’s contributors. “This is not an easy road, but its rewards are tremendous. Its joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.”

There are valuable lessons in this book even for those who have no direct personal experience of autism. Here’s Willingham, the TPGA team’s science editor, speaking frankly about what happens on the rare occasions she tells people her son is on the spectrum:

What response do you get from people when you mention your child’s difference or try to explain it to them? I can categorize our responses into three distinct groups.

From total strangers—and my mentions of autism in this context are rare—the response is pity. Clearly pity, and with it a lack of understanding of what I’m even talking about. And then, of course, I find myself struggling to clarify why pity simply isn’t necessary, to get across with pith what a great person my son is, what a total joy it is to have a wonderful person like him in my life. It’s rare that I bring up autism to strangers, although if I were savvier, I could use it as a way to enhance awareness and downgrade the pity response.

From casual acquaintances, such as parents of other children and periodically from others closer to me: “I don’t like labels.” “He seems like a pretty normal kid to me.”

These responses set my teeth on edge. They speak to so many things: Diminishing my son’s struggles. An accusation that we’re magnifying his struggles, or worse, have sought and gotten the “diagnosis du jour” of autism for a child who’s merely quirky. An implication that if we just left him alone without labels, he’d be just fine.

Of course, I have to forgive these responses. Sometimes, they’re just well meaning, an effort to say, “Well, even with that difference, he’s just a kid like other kids.” Sometimes, it’s exactly the implied criticism I think it is. But I must forgive. They know not of what they speak. How could they?

Invariably, these responses come from parents of neurotypical children. The fact is, they just don’t get it. They never will. Sorry, but unless you’ve spent hours wondering why your child’s anxiety leads to nonlinear, bizarre suicidal ideation at age three, you’re not gonna get it. Unless you look at your nine-year-old child and marvel at how far he’s come that he can say, “I’m going to go interact with that child over there,” and wonder if it’s the intensive therapies or your own efforts or his efforts or all of the above, you’re not gonna get it. Unless you’ve spent days fending off perseveration over strawberry plants because you unwittingly drove by a plant nursery, you’re not gonna get it.

Emily Willingham and her son in SF

TPGA science editor Emily Willingham and her youngest son at Ghirardelli Square in San Francisco.

One of the most progressive aspects of the Thinking Person’s Guide is that it includes a section of essays written by autistic people themselves, which gives it an intimate, insiders’ view of a way of being that is all too often depicted as an impenetrable enigma (represented by the ubiquitous puzzle-piece iconography employed by many fundraising organizations, which many self-advocates have come to detest). Their accounts indicate the pressing need to debunk stereotypes of autistics as either amazing savants or automatons who lack empathy, and to create neurodiversity-friendly workplaces — needs that are not addressed by the usual star-studded “autism awareness” campaigns that raise millions of dollars a year to scan genomes and hunt for new drug targets.

Rachel Cohen-Rottenberg, who has a new e-book out called Blazing My Trail, contributes a poignant reflection after being diagnosed in mid-life:

I have no inclination to ask who I might have been without being autistic. Being autistic is intrinsic to my life experience, to my insight, and to the gifts I bring. The One Above made me just as I am, and I respect that… The world is often not a safe and welcoming place for autistics. 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 defended the bullied rather than the bullies; I wish that more people took the time to get to know me and find out what a great good friend I am; 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.

Rachel Cohen-Rottenberg and her husband Bob Rottenberg.

Author/self-advocate Rachel Cohen-Rottenberg and her husband Bob Rottenberg.

For self-advocate Corina Lynn Becker, getting a diagnosis at 17 was not shattering, but empowering:

I want you to understand, that from my point of view, I did not suffer from autism. That is, autism does not cause me pain. It creates struggles and challenges, yes, that can be disabling, but the pain and suffering that I went through happened because of two things: being undiagnosed and not having the knowledge for supports and accommodations.

In other words, I struggled because nobody knew exactly what I was struggling with, and because I did not have the words to describe my difficulties. 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. With that hope, there is a chance to make a difference, to ensure that each child gets exactly what he or she needs and requires in order to succeed.

Autistic self-advocate Corina Becker

Self-advocate Corina Becker.

For parents who are rapidly reorienting in the wake of a child’s diagnosis, this book can play the role of a seasoned mentor who relieves the burden of unnecessary worry and grief while providing a detailed map of the road ahead.  Here’s Susan Walton on the importance of building a network of other parents who understand:

I have friends whom I met sitting in waiting rooms during the first weeks following my son’s diagnosis. When we looked at each other back then, our eyes told our whole story. We were all sick at heart and desperately trying to make sense of the news and figure out what to do. And it is amazing how strong we look to each other now. When we run into each other or find time for a coffee date, we see entirely different people looking back. Even as we are sharing news about the latest round of problems in our lives, the difference is amazing. We are in control and things are moving forward every day. We see battle-scarred but victorious soldiers in each other. These are valuable friends indeed.

The takeaway from the Thinking Person’s Guide is: You can do this, and you will become a wiser and stronger person for helping your son or daughter grow into the most creative, aware, loving, self-confident, and independent person that he or she can be. I’m grateful for this uplifting book, which has the potential to transform lives and society for the better — in this generation and the next.

Leo and autistic self-advocate Stephen Shore

Leo's music lesson with self-advocate Stephen Shore.

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Book of the Year: Thinking Person’s Guide to Autism by NeuroTribes, unless otherwise expressly stated, is licensed under a Creative Commons Attribution-NonCommercial 3.0 Unported License.

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53 Responses to Book of the Year: Thinking Person’s Guide to Autism

  1. Pingback: A book! A book! | Autism Twins

  2. Marianne says:

    Hi guys,

    I read your awareness month blog yesterday and thought it was excellent, so thanks for that.
    I know quite a lot of ‘aspies’ (as one of them refers to himself, anyway) and have become more driven to learn and understand better, partly due to a strong friendship that has recently developed.

    So, I was wondering if you could recommend some resources – online or otherwise – that aren’t directed specifically at parents (I’m not looking to toilet-train anyone…) but more at people who want to relate to and care better for autistic adults.

    If you have any ideas, please do ping me an email, or a link to a post I’ve overlooked!

    Many thanks :)

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  3. Pingback: Autism Awareness is Not Enough: Here’s How to Change the World | NeuroTribes

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  5. Pingback: Book Review: The Thinking Person’s Guide to Autism « Flappiness Is…

  6. Pingback: Autism roundtable, Part I: Angry parents, disability rights, and living in a neurotypical world | The Panic Virus

  7. Basavaraj KN says:

    Hi,

    Happy new year. Please inform me where in Bangalore/India I can purchase this book. My son ABHILASH 21 years is considered as mild MR and AUTISTIC

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  8. Pingback: The Thinking Person’s Guide to Autism Q/A | The Panic Virus

  9. Diana Martin says:

    Hi – I would really like to get a copy of this book to do a review. Can somebody give me a contact for the publisher? My son is considered low/moderate functioning on the autism scale. He is nonverbal, but motivated to work. We have helped him develop a business to make people aware in the community that people with autism have many untapped skills. They just need a good support system as adults to reach their potential. They need people with patience and vision. I also blog on the site, http://www.alexartloft.org that we need, as parents, to ask for help from society in terms of programs and resources for our children. I don’t want people to pity our situation, but rather see our son and other people with autism as contributors. Our son is 18 now and we are still finding our way with him. These discussions add to our experience. Thank you.

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  10. Pingback: The Thinking Person's Guide to Autism: 2011: The TPGA Year In … | theactingblogguide.com

  11. Maria Wise says:

    It always when I start hearing the “comments” regarding vaccinations and how they could not possibly contribute to any cases of autism.

    Spot on Maggie.

    Anyone can write a book expressing “their” viewpoint evidently

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    • Steve Silberman says:

      Sorry, Maria, not sure what you mean. The viewpoint in this book is the authors’ own viewpoints — and the authors are parents of autistic kids (like you), therapists, and autistic people themselves. The range of viewpoints expressed are diverse and very down-to-Earth, grounded in daily experience. Worth a read.

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  12. Pingback: “Thinking Person’s Guide to Autism” released « EBD Blog

  13. murthi says:

    When I read articles like this, I marvel at the level of rationalization that goes on. The reactions of strangers and friends described, while not ideal, is perfectly natural. Pity may be a misplaced sentiment, and using the word tragic an overkill, but ask yourself if the average person want to be in your place?…and the answer would be a resounding ‘no.’ Equally, does the average person want to be her/himself autuistic (or for that matter, be legally blind, be deaf or otherwise have less than, dare I say it, normal faculties)? again, ‘no’.

    The argument of nuerodiversity set my teeth on edge, just like the argument that deaf children should not take advantage of new medical technology like cocheal implants to improve their hearing. A cure for autism would be laudatory but I’m sure there will be autism-centric parents who would refuse it in the interests of neurodiversity.

    This is not to disagree that more support for, and understanding of, the condition is needed, just that claiming it as a virtue is living in denial (does anyone actually like additional stress in their lives?)

    Denial is part of life…reading about the ‘joys’ of raising an autistic child while downplaying its negative effects both on parents and the affected just shows how effective a coping mechanism it can (and maybe has to) be.

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    • Steve Silberman says:

      Murthi: I’ve seen the same argument used against gay people who dare to suggest that societal attitudes toward homosexuality deserve scrutiny — why would anyone want to live under that amount of stress? Wouldn’t any parent wish their child to be free of the obstacles posed by bigotry? For that matter, wouldn’t black people be happier as whites? Perhaps we could work on a “cure” for race instead of examining the damage that racism causes in our society. Likewise, who would ever want to live in a wheelchair? Isn’t disability itself the problem, not attitudes toward disability? Get rid of disabled people and then non-disabled people wouldn’t have to be upset by such images of horror — an argument any eugenicist could love.

      Yet research shows that parents’ attitudes toward their child’s disability has a profound effect on both their own happiness and the happiness of their children. A clarifying note from a researcher who is herself the mother of a profoundly autistic son:

      “Empirical data do not support the intuition that the more severe a child’s impairments, the more distressed the parents are. (Or conversely, the less severe a child’s impairments, the less distressed the parents are.) Simply put, study after study show that there’s not an empirical relation between parents subjective sense of distress and any objective measures of those parents’ offsprings’ autistic traits, communication impairments, social impairments, anxiety, or even intelligence level (so-called ‘low functioning’ children). What parents’ subjective level of distress *does* relate to is the parents’ *subjective* measure of their children’s impairments, and those subjective assessments of the children’s impairments rarely map onto objective measures of the children’s impairments. In this way, autism is like every other disability in showing that it is not the child’s objective capabilities or impairments that distress his or her parents; it’s the parents’ attitudes and the like. There are some severely impaired children whose parents nonetheless warmly embrace and accept their children’s disabilities, and there are some only very mildly affected children whose parents want nothing more than to cure the child of his or her disability. And the same is true for adults with disabilities. There often is no relation between the level of impairment and the disabled adults’ happiness, quality of life, and acceptance of his/her disability. But when there is a statistically significant relation, the relation is that the *more* disabled/impaired the person is, the higher his/her quality of life.”

      So, a “rationalization” that measurably improves the lives of autistic people and their families right now — instead of “someday” when there’s a “cure”? I’ll take it.

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      • murthi says:

        SteveS: You have misconstrued and exaggerated what I said: those with autistism would not themselves choose to have it, which in no way implies a parallel for a gay person or an oppressed minority…the first involves an incontrovertible lessening of ability as should be obvious to anyone who does not buy into the “differently-abled” syndrome.

        Bigotry is not the same as misplaced pity. Racism in not the same as sympathizing with a person having mimimized ability in any form.

        And while I agree with your last para (and also guardedly agree with the synopsis of the study, which I have of course not read,) my criticism was more for the writer(s) raising the rationalization to a level that suggests everyone should read this book.

        Finally, to compare anything I said to the horrors of eugenicists and killing people is contemptible. If you cannot have a civil disagreement, not much more to say.

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        • Steve Silberman says:

          Murthi: I do think you might try reading some writing by autistic people before you assume you’re qualified to make sweeping statements about what they want or don’t want as a group. Try reading the links in the blog post above (on the words “a lot to say” — an interview with Ari Ne’eman in which I specifically ask him if he would like to be cured — and on the essays by Julia Bascom and Rachel Cohen-Rottenberg), or the essays in the book. I’m very willing to have a civil discussion, but your criticisms of this book (not a “study”) will be more deeply informed once you read it.

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          • murthi says:

            Yeah, and I should be black before making comments about blacks (incidentally, I am non-white but don’t brag about it.)

            Let’s just leave it that I, personally, am very glad I’m not autistic and pretty much have my faculties and would absolutely be less “happy” if it were otherwise. But there’s no talking to anyone who actually believes an autistic person is better off being so, even if they say it. Good argument, say, for not finding a cure for a disease or improving anything. Wow. 10-4.

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        • chavisory says:

          murthi…I have autism, and while I didn’t choose to have it, I also wouldn’t choose a life other than this one.

          As someone without it, you only see the problems and disabilities; it’s hard for you to see its pleasures and gifts.

          For what it’s worth, I wouldn’t want to be in your place, either.

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  16. Ann says:

    I am excited to read this book. I am a speech-language pathologist working in a public school setting. I have worked with children with autism and their families for many years. I love my job. I love working with these kids, collaborating with teachers and parents, and trying to figure out how we can use our (increasingly shrinking) resources to try and build an environment for a student that will help them learn skills they need to navigate through a “general education” or in other words, real life setting. I’m amazed at how many other educational professionals are doing the same. So, when you, and so many others, talk about “fighting for your kid’s right to an individualized education”, the image of violence, of battle, of injury arises. Please consider this carefully. What is this image/attitude doing to the many amazing special education staff out there, who are working tirelessly to help as best they can? In a world in which our understanding of autism and what to do about it is changing at a dizzying speed? With less and less time and money available to keep up.

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    • Steve Silberman says:

      Ann, believe me, I’m with you, and I thank you for doing this important and inspiring work. My statement was primarily about the “increasingly shrinking” resources you mention — certainly not about fighting with the teachers themselves! I come from a family of teachers.

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      • chavisory says:

        Although sometimes it does in fact take fighting teachers themselves for even a halfway-appropriate education.

        Ann, I do not want to demean the work that I’m sure you do on behalf of your students. But yes, sometimes we need individualized educations, and sometimes we have to fight our teachers (and administrators and school boards) to get what we need.

        Yes, it was a battle, and one I usually lost.

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        • Paula says:

          I am an occupational therapist with more than 35 years in the field of special education. I find that now more than ever parents do need to fight for individualized education programs. I coach a mom who has a 2 year old daughter who demonstrates some characteristics if autism. The school district wants to assess for autism. When a very young child is labeled autistic, the plan for intervention loses individualization because we all KNOW that kids with autism are visual learners who need visual schedules and PECs, etc. This little girl has progressed in 7 months from using fewer than 10 words primarily to name things to uses 3-5 word phrases to commment, requst, and interact with people. She is engaging in true pretend play. If she had been placed under the autism criteria, she would have been sent to a special preschool classroom and her family would have lost the support they need to help her develop into the child she is. The label of autism now often includes a prescribed set of interventions that do not educate the child as a unique individual. When this little girl turns 3 she will be required to go to a special education classroom rather than being supported in her regular preschool classroom where her Grandmother takes her and participates with her. She is doing well in the regular preschool classroom. She has learned to sit at snack and circle time. She is now singing along with the songs. No extra classroom support is needed because the parents are there for part of the class and her grandmother stays if needed during the separation part of the class. A truly individualized program would not require this child to be taken out of a mainstream environment where she is learning and growing to attend a segregated preschool class. Parents are afraid to fight too much because they can lose services. If this mom refuses the class that is being offered, the child will not receive special education. Yes, there is a need to fight! And Yes, there are wonderful teachers and therapists out there and parents do not need to fight with them. Without the support of parents willing to fight with administration, teachers and therapists are caught in a system that does not always serve children and families well.

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  17. Lauri says:

    I cannot wait to read this book, I love TPGA’s writing, wit, outlook, and respect for all. Including the voices of autistic individuals is so important in any discussion about autism and something that has been sadly lacking in many other discussions and books. There’s no tragedy here..challenges, yes, but life is full of challenges. We have three children all wonderfully different, incredible, and challenging.

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  18. You’re right that the immune system is aberrantly activated in autism, Maggy. I’ve got Asperger’s and for over 20 years my main ‘specialist subject’ has been the study of the causation of non-communicable diseases, including autism.

    I posted on here about it half an hour ago about specific environmental chemicals which I believe are contributing to the autism epidemic, but the post seems to have disappeared into a spam filter, so I’ll just leave the address for my blog on the subject:

    http://www.nfkbdiseases.wordpress.com

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  19. GINA PERA says:

    Nuts and bolts guides to support parents are extremely important.

    So is research to understand what causes autism. We are performing so many “science experiments” around conception and delivery these days — from older moms and dads (which can mean not wholly healthy eggs and sperm, depending on lifetime habits) and myriad nutritional deficiencies in utero that are critical to the fetus’ developing neurological system (which forms almost at conception) to in vitro fertilization that often requires hormonal supplementation, and the overuse of Caesarean deliveries.

    It is unconscionable for anyone to downplay the research needed here and to advocate the joys of “neurodiversity.” These kids and adults miss out on a lot, and often suffer a range of health challenges as well. Their care is extremely expensive. We should definitely be focusing on prevention even as we help and support parents and children affected by autism.

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    • Steve Silberman says:

      Gina, as my 15 years of science reporting should indicate, I have the most profound respect for science and scientists. But I don’t see science and the effort to ensure better lives for autistic people now and in the future — which is the goal of the neurodiversity movement — as opposed. That’s what I like about this book: It recognizes that access to accurate science is an indispensable part of the toolkit for families on the spectrum. Research into the causes of complex conditions like autism can take many decades. Ask researchers trying to determine the causes of depression or schizophrenia — not to equate those things with autism. The long-awaited breakthrough is always around the next corner. In the meantime, there are tens of thousands of autistic teens in the US alone who are aging out of the supports and services available for kids; what are their families supposed to do now, today? What are autistic adults supposed to do — wait for a breakthrough in genetics before they have access to health care? Those kinds of questions don’t get asked enough when the primary focus of society’s efforts and funding is on researching causes. We need *both* science and more vigorous efforts to make the world a better place for autistic people.

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      • Matt Carey says:

        I think you hit one of the big problems with the discussion–so many people see this as an “either/or” topic.

        Either we work towards more rights, better services, etc., *or* we work towards research and a medical approach.

        No reason to be in that box.

        I keep reminding myself what you mentioned above: Bernard Rimland founded the “National Society for Autistic Children”

        After a while they had to change the name to the “Autism Society of America”. The children grew up. They were still autistic.

        That was, what, 45 years ago? We haven’t “Cured Autism Now” nor have we “Defeated Autism Now”, given that “now” was, what, 10 year or more ago for those groups?

        All this, however, gets into exactly the trap I thought would happen with discussion of the book: the idea that it’s just a “neuordiversity” book. It isn’t. It’s a book of good information. Sure, the authors didn’t take some of the very damaging stances which have all too often permeated the autism-parent discussion. And that’s a good thing.

        Good advice. Good information. Good book.

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      • GINA PERA says:

        Oh Steve, I’m sorry if I was unclear. I completely agree with you. “Both And”!

        I live in the San Francisco Bay Area, where I have been an advocate in the area of ADHD for 12 years. I have worked to provide support and education here and internationally on understanding ADHD and its treatment strategies.

        Some people with ADHD clearly represent a point on the “neurodiversity” spectrum; They are healthy, intelligent, and do well in life but they have a few challenges. Others suffer from symptoms so severe (as well as a host of comorbidities) they are truly debilitated, and conventional treatments don’t work for them.

        Increasingly, I see in the younger population so many intractable comorbidities (e.g. severe allergies, sleep disorders, vision and hearing problems) that expand far beyond anyone’s reasonable definition of “neurodiversity.” (Except maybe in San Francisco, where anti-psychiatry and anti-”label” sentiments run deep and strong.)

        I’m no autism expert but there is some degree of comorbidity of ADHD with autistic spectrum disorders, and I imagine that the same is true in this field: There are many people on the autistic spectrum who represent important aspects of neurodiversity. (Asperger’s, for example, is often called The Engineer’s/Scientist’s profile for good reason)) But there are others who were simply born behind the epigenetic 8-ball.

        Teasing out these factors — the difference between neurodiversity and severely impaired — is not easy but it must be done.

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        • Steve Silberman says:

          I very much appreciate your perspective, Gina. But I also think you may have a skewed view of what neurodiversity means. To me and to many autistic self-advocates, the neurodiversity movement is an extension of the disability rights movement, engaged in fighting for the things that severely impaired people and their families need — like support, resources, accurate scientific information, assistive technology, and basic human respect. It does NOT mean denying those needs in order to celebrate the gifts of “high-functioning” people or something. Quite the opposite. It means recognizing the millions of autistic adults who become invisible when the primary societal focus is fearing an epidemic and praying for a cure.

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          • GINA PERA says:

            Sorry Steve, it’s not me who has the “skewed view” — it’s many so-called progressives. I encounter them every day with their anti-psychiatry diatribes, Big Pharma conspiracies, etc.

            Otherwise, it’s not clear that you’re reading what I actually wrote. So I’ll stop now.

            cheers,
            g

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            • Steve Silberman says:

              Gina, I agree with you about progressives. Don’t get all hair-trigger and I promise not to do the same.

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              • GINA PERA says:

                That’s really funny! You misread what I’ve said (a few times) and then you tell me not to “get all hair-trigger.”

                Whatever.

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                • Steve Silberman says:

                  For what it’s worth, Gina, I really enjoyed most of your comments, particularly about ADHD. I’m sorry if I didn’t make that as clear as I should have.

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      • GINA PERA says:

        In my defense, I did close my original comment with this: “We should definitely be focusing on prevention even as we help and support parents and children affected by autism.” :-)

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    • chavisory says:

      ‘It is unconscionable for anyone to downplay the research needed here and to advocate the joys of “neurodiversity.” ‘

      Gina, I advocate for neurodiversity because that’s the movement that says that I have a right to exist in the world, and have value to the world, as I am rather than how somebody else would prefer me to be.

      That does not mean that we shouldn’t work to improve life for autistic people through advances in educational methods, support systems, and therapies for symptom relief. Of course we should.

      But I truly believe that the way autistic people think and experience the world is valuable to humanity. So heck yes, I support “the joys of neurodiversity.”

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      • GINA PERA says:

        Does that mean you don’t want to improve preventive strategies that mean kids and adults with autism don’t also suffer from health-threatening GI, respiratory, and other conditions?

        If that’s the case, then that means you want “biodiversity” in the sense that no diseases and disorders such as spina bifada, cp, etc. are prevented and treated.

        The brain is an order, the most complex and vulnerable organ. Stopping medical advances at the neck makes no sense to me, especially because the brain controls almost every physiologic process.

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        • GINA PERA says:

          (Wish there was an edit function here…)
          I meant to write “the brain is an ORGAN.”

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          • Steve Silberman says:

            No, that’s not what I mean at all. See my statement above about comorbidities.

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            • GINA PERA says:

              Um, Steve, I was responding to “chavisory,” not you.

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              • chavisory says:

                In that case, er, no, it does not mean I don’t support finding effective help for comorbidities. I support research for finding effective and ethical therapies which improve anyone’s quality of life. I don’t see how any of that is mutually exclusive with supporting neurodiversity because I believe all kinds of neurologically different people are valuable as they are.

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  20. Matt Carey says:

    I’m two chapters in to the Thinking Person’s Guide to Autism. Yes, this is a book I wish I had years back.

    First off the information is good. The book doesn’t make lite of the challenges autistics face or parents face. But it doesn’t send a parent down a damaging path either.

    The format of the book is well suited to a busy parent’s needs. Short essays grouped together by topic. There is a lot of information bombarding parents when the first learn about autism and they don’t always have time to take on a 400 page book.

    I’m getting a copy for my pediatrician so he can (I hope) recommend it to parents.

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  21. Maggy says:

    I’m a thinking person who has thought about autism everyday for the last 14 years. What I think is that Autism is simply a term from the psychiatric DSM-IV manual. It’s nothing but a smokescreen. It provides an alibi for the drug companies who added mercury to vaccines at levels 250 times higher than hazardous waste levels (based on toxicity characteristics). It provides an alibi for the CDC, FDA, the American Academy of Pediatrics and the other drug company cronies who are responsible for the safety of our children. It provides an alibi for the pediatricians who administered this poison. It provides an alibi for health insurance companies so they don’t have to pay for treatment for these sick kids. It provides an alibi for psychiatrists so they can force powerfull anti-psychotic drugs on these kids who are already terribly confused.

    There will never be an identifiable cause for autism. There are though 21 published papers which identify the underlying medical condition of autism as neuroinflammatory disease. My favorite is ‘ Neuroglial activation and Neuroinflammation in the Brain of Patients with Autism’. This was published by John Hopkins University. Now, do you want to debate whether mercury, a known neurotoxin, added to childhood vaccines at levels 250 times higher than what the EPA identifies as hazardous waste, causes neuroinflammatory disease? Do you want to debate whether brain damaged kids behave in a way so that some psychiatrist can label them as somewhere on the ‘spectrum’?

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    • Steve Silberman says:

      No Maggy, I do not want to debate you about who or what should be blamed for autism. But I do recommend you read this book for the perspective of other parents on the same path with their kids.

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