Top 10 Books and Websites

Published December 31, 2008 @ 01:38PM PT

Ten essential readings, five each from Dora and Kristina.

Dora's Picks

1. "Don't Mourn for Us" (1993)
Jim Sinclair

A powerful, short essay written by an autistic individual to help parents understand what it's like from "the other side." If Dora had to pick just one thing for the family of a child on the autistic spectrum to read, it would be this essay.

2. Autism and the Myth of the Person Alone (2005)
Douglas Biklen, Richard Attfield, Larry Bissonnette, Lucy Blackman, Alberto Frugone, Tito Rajarshi Mukhopadhyay, Sue Rubin, Jamie Burke

The perspectives of the book's seven autistic authors, all of whom have little or no spoken communication and were at one time considered intellectually disabled, gives a wonderful window into the autistic experience. The perspective of the book's one non-autistic author gives an excellent example of how to effectively look past assumptions, respond with empathy and respect, and find real understanding, communication, and common ground with autistic individuals. If Dora had to pick just one book on autism for anyone to read, this would be it.

3. Realizing the College Dream with Autism or Asperger Syndrome: A Parent's Guide to Success (2005)
Ann Palmer

While this book has the word "college" in the title, it includes an enormous amount of practical information for how to work with primary and secondary schools, special education, classroom integration, and considerations of employment and community inclusion, from a mom who has a great balance of both positive and practical attitudes toward parenting an autistic child into adulthood. It's also useful for individuals on the autistic spectrum to get ideas about how to better understand and advocate for their own needs in education.

4. Songs of the Gorilla Nation (2005)
Dawn Prince-Hughes

Presenting a different sort of life experience from the authors in Dora's pick #2, Dawn Prince-Hughes' autobiography gives the perspective of an individual who has some spoken communication and was not diagnosed on the spectrum until adulthood. Prince-Hughes relates that experience with such a powerful and poetic voice that she's worth reading simply for the beauty of her words.

5. autistics.org Autism Information Library

The autistics.org library is a collection of essays by a diverse collection of individuals on the autistic spectrum and a few non-autistic allies. The theme of the essays is social justice, advocacy, and human rights. The scope of the essays encompasses social critique, self-understanding and self-help, threats to survival, self advocacy, and many other topics. These essays may represent a perspective on autism and self advocacy others are not used to seeing. Warning: This site contains some very political writing, and situations and ideas that may make some people uncomfortable.

Kristina's Picks

1. Exiting Nirvana: A Daughter's Life with Autism (2002).

Clara Claiborne Park, author of one of the first parent memoirs about raising an autistic child (The Siege, 1967), recounts her daughter Jessy's life and development as a painter. Park's account of Jessy's systems of "flavor tubes," clouds, open and shut doors, and more have been especially helpful to Kristina in understanding her son Charlie's own ways of creating order and patterns in the world.

2. The Mind Tree: A Miraculous Child Breaks the Silence of Autism (2003)
Tito Rajarshi Mukhopadhyay writes about his early life in India, his instruction by his mother, Soma, and how he started writing narratives to explain his disordered sensations and difficulties coordinating his mind and body. Poetry rich in sensory detail and imagery is interspersed.

3. Unstrange Minds: Remapping the World of Autism (2007)

Anthropologist Roy Richard Grinker recounts how cultural and historical factors have shaped our contemporary understanding of autism and also looks at autism in South Korea, India, and South Africa. He argues that the recent, higher, more accurate statistics on autism are a "sign that we are finally seeing and appreciating a kind of human difference that we once turned away from and that many other cultures still hide away in homes or institutions or denigrate as bizarre." The author also from her babyhood to her diagnosis to her entrance into public school at the age of six, to her as the animal-loving, cello-playing, young woman she is today.

4. Girls of Tender Age: A Memoir (2007)

Mary-Ann Tirone-Smith recalls her childhood in post-World War II Hartford, Connecticut, in an Italian-French Catholic family of "Working Stiffs." Her older brother, Tyler, was considered "retarded" or "crazy": Extremely sensitive to any noise, he was also thoroughly knowledgeable about World War II military history; only later does the author learn that Tyler was autistic. Intertwined with Tirone-Smith's autobiography is an account of a lurking serial killer and rapist who murders one of her fifth-grade classmates, Irene Fiederowicz.

5. The Autism Hub

This is a network of blogs by autistic adults and by parents of autistic children. Created by Kevin Leitch---who blogs ardently about science and autism research and much more at Left Brain/Right Brain ----the hub offers a wide variety of perspectives and experiences, from Kathleen Seidel's Neurodiversity blog (essential reading to find about vaccine litigation and all aspects of autism quackery) to Asperger Square 8 by Bev Harp, Drive Mom Crazy by Jason Ross, Ballastexistenz by Amanda Baggs and NTs Are Weird by Joel Smith. On the Hub, too, you'll find blog by parents that chronicle the day-by-day (like Whitterer on Autism by Madeline McEwen-Asker) and that remind you about why we need to take action for autism.

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Comments (30)

Hi -
I like both lists! If either of you read my book I would love to hear what you think of it. Best, Susan

Posted by susan senator on 01/01/2009 @ 06:23PM PT
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Please do add Susan's book. It's one of my personal favorites.

Posted by Kerry Cohen on 01/02/2009 @ 05:03PM PT
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I would add "Let Me Hear Your Voice" by Catherine Maurice. Whatever you think of ABA, it is still a powerful, inspiring story, and has influenced many families. It is also important to show several different views and types of information if you are recommending books for families to read. Some people might actually want to be aware that there are research validated methods out there that might be effective in teaching their children to help realize their full potential.

Posted by Barbara Byers on 01/02/2009 @ 05:33PM PT
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Dr. Paul Offit's book, especially Autism's False Prophets, are worthy reads. Dr. Offit's research has saved thousands of lives, and he has dedicated the profits from his book to Autism research. It is a worthy read.

Posted by Mark Probert on 01/02/2009 @ 07:48PM PT
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I would like to know the time frame to be approved for autism hub. I have sent two emails over few months and no response.

Posted by Bonnie Sayers on 01/02/2009 @ 09:25PM PT
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""Let Me Hear Your Voice" by Catherine Maurice."
I think it would be appropriate at some point to add this book perhaps to the top 10 notorious books on autism. Ms. Maurice (not her real name), never had autistic children and referred to her fictional autistic children as "non-humans" the book is notable also for how many parents this book sent down the road to financial ruin.

Posted by Robert Adams on 01/03/2009 @ 11:32AM PT
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I recommend that people read "The Impossible Cure" by Amy Lansky, Ph.D. Dr. Lansky was a computer scientist whose son was diagnosed with autism. She eventually took him to a good homeopath. Her son was cured, very gradually. Dr. Lansky gave up her career as a computer scientist and got the training to become a homeopath, and still practices as a professional homeopath.

Posted by C.A. Lawrence on 01/03/2009 @ 07:33PM PT
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Robert,

You clearly have not read the book, nor do you seem to have any idea what you are talking about. I have met Ms. Maurice, yes it was a pseudonym, to protect her children's privacy, and also because of the hate mail she gets from people like you. She most definitely did have children diagnosed with autism, two of them, there have been papers published in peer-reviewed journals documenting it.

As for financial ruin, if insurance companies and the government in this country truly cared about providing the most effective treatments and therapies for the children on the autism spectrum, then it wouldn't be that way. She has given countless parents hope and knowledge. I sincerely doubt you have even read the book.

This is so typical of what so many bossy, arrogant people who claim to be autistic act like. Saying you have autism appears to be a convenient excuse for acting rude, narrow-minded, obsessing on your own topics and opinions and ignoring others or treating them like they don't matter. I am done with this blog, which is a total joke at actually providing information or a wide range of views. Sad if someone actually came here to get decent information or help for their newly diagnosed kid. Actually it's beyond sad, it's disgusting and negligent.

Posted by Barbara Byers on 01/03/2009 @ 07:59PM PT
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@Bonnie, I can ask someone about the time frame regarding the hub.
Regarding _Let Me Hear Your Voice_........one of the first books I read upon Charlie's diagnosis, and a book in much need of careful critique, plus. Maurice writes more about her daughter in _Making a Difference_:
http://tr.im/2wdi

But not so much about her son.

Posted by Kristina Chew on 01/03/2009 @ 08:07PM PT
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Barbara,
Hope you find some peace.

Posted by Robert Adams on 01/03/2009 @ 08:41PM PT
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thanks for the follow up Kristina. I am looking at the other book you mentioned Maurice did, was wondering if any updates on her kids. I still need your address for the books to be sent to you from autism twitter day.

Posted by Bonnie Sayers on 01/04/2009 @ 12:12PM PT
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@Bonnie, just tweeted my office address to you ----- there is a pretty long update about Anne Marie (sp?) the older child, but not much about Michel, the younger child.

Posted by Kristina Chew on 01/04/2009 @ 12:30PM PT
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@Susan, there's so many parent memoirs----certainly a (future) post could be done on all of them (Kerry, yours too)---I've always liked your title especially, Susan, and how that idea of "making peace" influences the entire book. (Especially amid so much talk of "fighting" and "being at war" etc. with autism......)

Posted by Kristina Chew on 01/04/2009 @ 09:07PM PT
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I would like to recommend Bev's Asperger Square 8 blog.

http://aspergersquare8.blogspot.com/

(she is part of the autism hub)

I love her cartoons--so powerful.

This post corrects misinterpretations of neurodiversity

http://aspergersquare8.blogspot.com/2009/01/cages.html

Posted by Liz Ditz on 01/06/2009 @ 12:53PM PT
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If I made a top 10 it would definitely include Bev's Asperger Square 8, and Amanda Baggs' Ballastexistenz.

Posted by Norah vd Stel on 01/06/2009 @ 03:28PM PT
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My own main interests are Asperger syndrome, synaesthesia and intellectual giftedness, three brain conditions that I believe are inter-connected in some way, and my recommended reading list reflects these interests.

Asperger, Hans ‘Autistic psychopathy’ in childhood (translated and annotated by Uta Frith)
Chapter 2 in
Frith, Uta (ed) Autism and Asperger syndrome. Cambridge University Press, 1991.[I believe this was the first account of Asperger syndrome and is arguably still the best] Baron-Cohen, Simon The hyper-systemising theory of autism. 2005.
http://www.awares.org/conferences/show_paper.asp?section=000100010001&conferenceCode=000200010014&id=4&full_paper=1 Collins, Paul Not even wrong: adventures in autism. Bloomsbury USA, 2004. Gillberg, Christopher A guide to Asperger Syndrome. Cambridge University Press, 2002. Grandin, Temple (with Margaret Scariano) Emergence: Labeled Autistic. Arena Press, 1991.

Grandin, Temple Thinking in pictures: and other reports from my life with autism. 1st edition. Doubleday. 1995. Grinker, Roy Unstrange minds: remapping the world of autism. Basic Books, 2007. Lawson, Wendy Life behind glass: a personal account of autistic spectrum disorder. Southern Cross University Press, 1998. Murray, Dinah, Lesser, Mike and Lawson, Wendy Attention, Monotropism and the Diagnostic Criteria for Autism. Autism. Vol. 9, No. 2, May 2005. p.139-156.
http://www.autismandcomputing.org.uk/hypothesis.en.html Robison, John Elder Look me in the eye: my life with Asperger's. Crown, September 2007. Rufus, Anneli Party of one: the loners' manifesto. Marlowe & Company, 2003.[I would argue that this is actually a book about Asperger syndrome, even though the author might disagree.] Tammet, Daniel Born on a blue day: a memoir of Asperger’s and an extraordinary mind. Hodder and Stoughton, 2006. Winner, Ellen Uncommon talents: gifted children, prodigies and savants. Scientific American Inc., 1998.
http://www.ucd.ie/artspgs/langimp/savants.pdf

Posted by Lili Marlene on 01/10/2009 @ 10:55PM PT
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Another try:

Asperger, Hans ‘Autistic psychopathy’ in childhood (translated and annotated by Uta Frith)
Chapter 2 in
Frith, Uta (ed) Autism and Asperger syndrome. Cambridge University Press, 1991.[The first account of Asperger syndrome and arguably still the best]

Baron-Cohen, Simon The hyper-systemising theory of autism. 2005.
http://www.awares.org/conferences/show_paper.asp?section=000100010001&conferenceCode=000200010014&id=4&full_paper=1

Collins, Paul Not even wrong: adventures in autism. Bloomsbury USA, 2004.

Gillberg, Christopher A guide to Asperger Syndrome. Cambridge University Press, 2002.

Grandin, Temple (with Margaret Scariano) Emergence: Labeled Autistic. Arena Press, 1991.

Grandin, Temple Thinking in pictures: and other reports from my life with autism. 1st edition. Doubleday. 1995.

Grinker, Roy Unstrange minds: remapping the world of autism. Basic Books, 2007.

Lawson, Wendy Life behind glass: a personal account of autistic spectrum disorder. Southern Cross University Press, 1998.

Murray, Dinah, Lesser, Mike and Lawson, Wendy Attention, Monotropism and the Diagnostic Criteria for Autism. Autism. Vol. 9, No. 2, May 2005. p.139-156.
http://www.autismandcomputing.org.uk/hypothesis.en.html

Robison, John Elder Look me in the eye: my life with Asperger's. Crown, September 2007.

Rufus, Anneli Party of one: the loners' manifesto. Marlowe & Company, 2003.[I would argue that this is actually a book about Asperger syndrome, even though the author might disagree.]

Tammet, Daniel Born on a blue day: a memoir of Asperger’s and an extraordinary mind. Hodder and Stoughton, 2006.

Winner, Ellen Uncommon talents: gifted children, prodigies and savants. Scientific American Inc., 1998.
http://www.ucd.ie/artspgs/langimp/savants.pdf

Posted by Lili Marlene on 01/10/2009 @ 10:59PM PT
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@Lili Marlene, thanks for the list-----and thanks to everyone; sometimes it seems there's almost too many books to work through.
My own suggestions were based on the books that have, personally, increased my understanding of autism in regards to helping my son, and that I constantly return to. More than a few of the suggestions are on are bookshelf, and hope that more suggestions will follow.

Posted by Kristina Chew on 01/11/2009 @ 08:49AM PT
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I'd add _Elijah's Cup_, by Valerie Paradiz, to the list. As I wrote in http://www.autistics.org/library/elijahs_cup.html, it is a parent's memoir, but a memoir like no other: it is a milestone in increasing one's understanding of autism in regards to helping one's child.

Posted by Phil Schwarz on 01/11/2009 @ 05:07PM PT
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There are a lot of books that I've found helpful over the years, but this honestly has made I think one of the biggest impacts on me.
This is actually a children's book I had purchased a year before Meghan's diagnosis. It's called "Ruby in Her Own Time" (Ruby Flew Too! in Great Britain) and it's by Jonathan Emmett. It's about a little duck who is born last of her siblings and is always a bit behind. It may seem silly, but this book has always been a comfort to my husband and I and has helped us maintain perspective on our kids. The sequel "This Way Ruby!" is also wonderful too.

Posted by Siliconmom . on 01/11/2009 @ 05:22PM PT
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Someone mentioned a book that was apparently written under a psuedonym to protect the privacy of the child written about. It seems to me that there are good arguments for and against authors writing about the autistic spectrum to conceal their identity. There must be huge ethical concerns when writers choose to write about their autistic offspring or autistic family members. Even when an autistic adult writes an autobiography it can cause readers to ponder whether their kin are also autistic, as we know the autistic spectrum is in many cases based on genetics. And the very nature of autism is so personal that it's hard to write about a neuro-atypical life without writing stuff that very revealing. But on the other hand, if you are making important or controversial claims about the autistic spectrum based on accounts of personal experiences, people will have the right to ask who you really are. I think the whole business of writing about the autistic spectrum is an ethical minefield and a tricky business.

I believe there is at least one book in my list by an author who is published under a psuedonym, and I can understand why they might have chosen that option.

Posted by Lili Marlene on 01/20/2009 @ 04:08AM PT
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Here's a clip of a comment from up above:

I think it's important to remember how amazing it is for autistic people to be able to count on and depend upon a growing community voice. It's groundbreaking and magnificent, as well as highly due. It's only fair that our opinions as a whole should be included in what touches us directly. There's so much more to be learned and shared about autism. It's time now--so get ready--because wherever we go, there we are.

Let's not forget that anybody can be rude, narrow-minded, or obsessed. I don't recall the DSM IV manual listing rudeness as part of the diagnostic criteria. Rudeness can breed in any human with a pulse.

It zaps me when people refute the validity of some autistics on the spectrum. This is why memoirs, videos, and blogs stemming from autistics are so important. As autism researchers and enthusiasts, we're not always going to agree, but we can work together as one. What the autism community needs first and foremost is understanding and compassion. From those essential qualities, change can be born.

Posted by Elesia Ashkenazy on 01/20/2009 @ 08:47PM PT
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Ooops, for some reason, my clip was either omitted or deleted. Here's the clip I was commenting on from up above:

"This is so typical of what so many bossy, arrogant people who claim to be autistic act like. Saying you have autism appears to be a convenient excuse for acting rude, narrow-minded, and obsessing on your own topics and opinions and ignoring others or treating them like they don't matter."

Posted by Elesia Ashkenazy on 01/20/2009 @ 08:51PM PT
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Other great websites:

Dr. Paula Kluth (Autism and Education/Inclusion) - http://www.PaulaKluth.com

Do 2 Learn (Educational Games and Materials) - http://www.do2learn.com

PositivelyAutism (Free Autism Newsletter and Printables Games, Flash Cards, and Data Sheets) - http://www.PositivelyAutism.com/

Posted by Nicole Caldwell on 01/31/2009 @ 05:59AM PT
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Nicole, those are some really great websites. I especially liked the Paula Kluth website.

Posted by Robert Adams on 01/31/2009 @ 07:07AM PT
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Great list. I'd like to add my latest book, because it is all based on interviews of all different types of people on the spectrum - verbal and typers - about what was important to them growing up. I really appreciated everyone sharing their opinions and experiences so that parents and professionals could have a better understanding of what growing up with autism was like for them personally. The book is : Autism Life Skills:From Communication and Safety to Self-Esteem and More -10 Essential Abilities that Every Child with Autism Deserves and Needs to Learn.www.chantalsicile-kira.com

Posted by Chantal Sicile-kira on 02/06/2009 @ 07:20PM PT
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There are two other books that are useful and that all parents, who have children on the autistic spectrum, should read, which are "The Asperger's Answer Book: The Top 300 Questions Parents Ask" and "Solutions for Adults with Asperger's Syndrome". It would help them become better advocates for their children.

Posted by Emanuel Frowner on 02/18/2009 @ 06:35PM PT
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One last thing, I would like to read Dora's list of books and Christina's list of books soon.

Posted by Emanuel Frowner on 02/18/2009 @ 06:39PM PT
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I'd like to mention a web site about Asperger syndrome that I have come across. It is full of quotes from people who have AS from all over the world, and it also contains personal observations by the author, "a Swedish female diagnosed AS/HFA" named Inger Loreli. She also has synaesthesia. I have not read every word at this web site, but what I have read is very thoughtful and worthwhile.

Inside perspectives of Asperger syndrome & the neuro-diversity spectrum
http://www.creative-minds.info/index.htm

Posted by Lili Marlene on 04/12/2009 @ 04:03AM PT
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Have you heard of the book, Play to Grow: Over 200 Games Designed to Help Your Special Child Develop Fundamental Social Skills by Tali Berman? Parents (and educators) have said it is a great workbook for helping children with autism actualize their potential.

Bryn N. Hogan, the Executive Director for the Autism Treatment Center of America said, “Play to Grow provides the tools for parents to tap into the incredible power that can change the course of the lives for children with autism.”

Posted by Nina Lesowitz on 08/03/2009 @ 08:51AM PT
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Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.