April is Autism Awareness Month -- Books relating to the Autism Spectrum

April is Autism Awareness Month!
In honor of this fact, I’ve started this thread for anyone who would like to do a little “Autism April” reading. Below are some books about people on the Autism Spectrum. I may add to this list as I find more, and I welcome your suggestions and recommendations.

Books I’ve read and enjoyed / found especially helpful

Non-fiction
Facing Autism by Lynn Hamilton
Emergence: Labeled Autistic by Temple Grandin
Thinking in Pictures by Temple Grandin
Our Journey through high-functioning autism and Asperger Syndrome by Linda Andron
There's a Boy in Here by Judy Barron and Sean Barron
Novels (featuring characters on the autism spectrum)
The Speed of Dark by Elizabeth Moon
The Curious Incident of the Dog in the Night Time by Mark Haddon
Mockingbird by Katherine Erskine (2010 National Book Award – Young People’s Literature)
Al Capone Does my Shirts by Gennifer Choldenko (2005 Newberry Honor Book)
Anything But Typical by Nora Raleigh Baskin (2010 Schneider Family Book Award – Middle School)

Books on my TBR list / ones I have heard about but cannot personally vouch for yet:

Non-fiction
Unwritten Rules of Social Relationships by Temple Grandin and Sean Barron
Thorn in My Pocket: Temple Grandin’s Mother Tells the Family Story by Eustacia Cutler
Mozart and the Whale: An Aspergers Love Story by Jerry Newport (made into a movie)
Born on a Blue Day by Danie Tannett
Developing Talents: Careers for individuals with Aspergers Syndrome and high-functioning Autism by Temple Grandin
Realizing the College Dream with Autism or Asperger Syndrome: a parent’s guide to student success by Ann Palmer
Aquamarine Blue 5: personal stories of college students with Autism by Dawn Prince-Hughes

Fiction
Up High in the Trees by Kiara Brinkman
Marcello in the Real World by Francisco X. Stork (2010 Schneider Family Book Award – Teen)
Al Capone Shines My Shoes by Gennifer Choldenko
Rules by Cynthia Lord

Great list. I am currently reading Marcello in the Real World, a book highly recommended by Stasia.

Wow, you're fast, Linda! Welcome! Thanks for stopping by!

I look forward to reading your comments about Marcello in the Real World.

I've been reading some books related to this topic recently.

I liked:
Nonfiction:
Born on a Blue Day by Daniel Tammett - superb!
Look Me in the Eye by John Elder Robison
Fiction:
The Curious Incident of the Dog in the Night Time by Mark Haddon

I also liked (but less so):
Nonfiction:
Dancing with Max by Emily Colson
Mozart and the Whale by Jerry Newport

I'm looking forward to reading books by Temple Grandin.

I've added a link to this thread on the group wiki. It's "Autism Awareness April".

#4 Hi, Madeline! I've really enjoyed the things I've read by Temple Grandin. I've also attended a couple of conferences where she was keynote speaker. What an amazing woman!

#5 Thanks a lot, Jim! Have a good day.

I can recommend two older books which I loved, both by Clara Claiborne Park, a professor of English at Williams College who wrote about her daughter Jessy. The Siege: A Family's Journey Into the World of an Autistic Child (1967) deals with Jessy's early years, and the delays and frustrations that the Parks had to go through before their daughter was finally diagnosed correctly. Exiting Nirvana: A Daughter's Life with Autism was written in 2001, and describes Jessy as an adolescent and adult.

I would also highly recommend The Curious Incident of the Dog in the Night-Time; I loved that book!

I'll plan to read Thinking in Pictures, as I've wanted to read one of Temple Grandin books.

Yen Press is publishing a manga series about a mother and her child with autism, With the Light by Keiko Tobe. It's won a few awards, iirc, and I've heard a lot of coments about it being quite good. They've published 7 of the 15 volumes, it looks like, though the series ended prematurely with the author's death in 2010. I haven't read it myself, but that's mostly because I am on the spectrum myself (the high end) and I prefer to avoid reading fictional accounts.

I've also read Exiting Nirvana and thought it was quite good. Saving Max is on my TBR, so I can't vouch for it, but will be reading it soon.

7. Hi, Jim! I missed Exiting Nirvana when I made the list -- a friend from church had recommended it. I loved Thinking in Pictures. I had a copy autographed to my son by Temple Grandin. I loaned it to my son's former case manager, who was new to working with autism and left his case quickly, and she never returned it. Grrrrrr......

8. Welcome, Keri. I was not familiar with that manga series. I shall look into it!

9. I hope you'll post a review or some comment on Saving Max when you read it!

I'll add my recommendation for Marcelo in the Real World. Also the picture book All Cats Have Asperger Syndrome by Kathy Hoopman.
A nonfiction that I started, haven't finished but was finding interesting is Charlotte Moore's George and Sam: Two Boys, One Family, and Autism.

Another I haven't read but is on my someday tbr list:
The Horse Boy: A Father's Quest to Heal His Son by Rupert Isaacson

11 Thanks for the recommendations, Kerry!

My wife is in her clinical fellow year for her Masters in Speech Language Pathology and has toyed with specializing in autism. She just bought the Temple Grandin books you listed above.

Thanks for the link...I'll be sharing this with her!

Great, Mac! Best wishes to her in her studies and work!

I will be back tomorrow to browse some more :)

count me in tho!

>10 tymfos: will do :)

What a fantastic idea for a thread, Terri! Coincidentally, I just ordered the book edited by Uta Frith, Autism and Asperger Syndrome, which should arrive next week. I am looking forward to checking out all the great recs I'll get from this thread.

I'm so glad there is a month for people like me.

17 Sher, I look forward to your comments about that book.

18 You're on the spectrum, DragonFreak? My son has high functioning autism; I think one of my brothers has Aspergers, though he was born in an era when the diagnosis just wasn't made. A lot of my family members (including me) seem to have a lot of the autism spectrum traits, especially sensory issues.

I firmly believe that as more knowledge is out there about the autism spectrum, promoting understanding, there will be less discrimination against and discomfort with people on the spectrum by "neurotypicals."

Great idea, I have read quite a few of the books mentioned but not all. I will be starring this thread to follow throughout the month. I have two sons on the spectrum one has PDDNOS (basically high functioning) and the other as Aspegers. Even though they are both on the spectrum they are polar opposites.

Up High In The Trees I really liked :)

I am thinking of reading Al Capone Does My Shirts....LT says high probability I won't like :/ I like a challenge

and The Curious Incident of the Dog in the Night-Time has been on my TBR list forever!

>19 tymfos: Yes I am. Aspergers it is. I look of it as a gifted curse, but I wouldn't have me any other way. I don't think it's really high functioning. Without knowing much about the high or low levels, I think I maybe a medium-ish.

#20 Welcome, bbellthom!
Even though they are both on the spectrum they are polar opposites
That doesn't surprise me a bit. Each human being is unique, and that is as true on the autism spectrum as for those who are not.

#21 Kara, Up High in the Trees is one I definitely plan to read in April. I met the author of Al Capone Does My Shirts at a children's literature festival. Her presentation really impressed me. Curious Incident of the Dog in the Night-Time is one I enjoyed.

#22 DragonFreak, I think all the terms and labels are kind of relative and a bit arbitrary. I tend to think of Aspergers as automatically on the high-functioning end of the spectrum. My son is probably more medium-functioning than high, if that term were widely available. He's able to be in mainstream classes, but needs some accommodations. He's verbal, but struggles with language in many ways. Of course, the social stuff is a big struggle for him. He's good with math (except geometry) and computers and maps. And I wouldn't have him any other way! Except I wish I could make some things in life a little easier for him, because I know he gets hurt by the way some people treat him and things that happen that he doesn't understand.

>23 tymfos: I love math, and I'm am really good at it once I finally decided or forced to listen the teacher. Oh, but I'm not going to talk about my Kidnergarten days. You know it's bad when you have your very own desk and the principal's office.

#24 You know it's bad when you have your very own desk and the principal's office.

Oh, dear.
Earlier this year, I thought the principal had me on his phone's speed dial! My teenager had reached the point of testing boundaries -- a very normal bit of growing up, actually. Things have settled down a bit now.

My great nephew is autistic and a teenager and at the point of testing boundaries. Very difficult for all around including the poor girls at school that he hugs with all his might - he's a very big boy.

I have several books I hope I'll get to in April:
How Can I Talk If My Lips Don't Move? by Tito Rajarshi Mukhopadhyay
Born On A Blue Day by Daniel Tammet
Unstrange Minds by Roy Richard Grinker
The Ride Together: A Brother and Sister's Memoir of Autism in the Family by Paul and Judy Karasik
and a novel - A Road Through the Mountains by Elizabeth McGregor

I've seen Temple Grandin interviewed on TV several times and have read several of her books and I think I gave my sister the one about career choices. I meant to anyway. I guess I'll have to check on that. I'm looking forward to the month.

What a great idea for a thread! I've read The Curious Incident of the Dog in the Night-time and LOVED it, but this will help me expand my horizons. I've starred it. Thanks!
Ellen

I have a couple of friends who have children on the Autism Spectrum so I think I shall take this opportunity to try to become a little more aware. The last Jodi Picoult novel I read (House Rules) dealt with a teen with Asperger's but I did not find the portrayal that realistic. I look forward to reading something that folks here recommend!

A friend of mine who has Asperger's also did not like that Jodi Picoult book. I think I'm going to skip House Rules.

My son, who is now 16 was diagnosed a few years ago as Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS), a mild form of Aspergers. Actually having a diagnosis helps after much worry and wondering why is this child so different.

Another good YA novel that draws awareness to how aspergers/autism was misdiagnosed in the past is Celia Rees' The Truth Out There.

#26 Hi, CitizenJoyce! My son has discovered girls, too, and it's been a bit difficult at times. You have several books in your post of which I wasn't aware. I will investigate them!

#27 I'm happy if this is helpful, Ellen.

#28, 29 Hi, elfchild and Madeline! I've never read anything by Jodi Picoult, but I haven't heard anything that has made me really want to read her books.

#30 Kerry, I've found that the diagnosis can be very useful in understanding what's going on in my son's mind, why he reacts the way he does, etc. And you've suggested another book that wasn't on my radar! I think my Ever-Expanding list is about to expand . . . again . . . :)

The boy-girl, man-woman thing is a struggle for most humans, just a little bit harder for this problem that has everthing to do with socialization. I have my fingers crossed.

I just looked at an e-mail message from The New York Times, which included an ad about a new book entitled Be Different: Adventures of a Free-Range Aspergian by John Elder Robison. An excerpt of the book on Scribd is available here.

32. True! We'll both cross our fingers!

33. Thanks for the info and link, Darryl! I'll have to check it out when I have a little more time.

Thanks for the link, Darryl. I read it, found out that the Barnes and Noble by me just got in some copies and picked one up for my sister before they'd even hit the shelves. I'm sure I'll have to read it very gently before I give it to her. I liked what the boy has to say about rituals. I too eat asparagus with my fingers and also fried potatoes if they're very crisp. My rituals don't make people think I'm mentally deficient, just rude. But he was so embarrassed by his. Maybe it's a younger person thing. By my age I am what I am. On your first date it's a whole different scenario.

I finished reading Marcelo in the Real World. If any of you have read this book and would like to discuss it, please let me know.

Did you love it, Linda? I did.

Yes, Joyce, I did love the book. I'm having a difficult time writing the review. There are so many nuances throughout.

As Terri indicated in her post, it was the 2010 recipient of the Schneider award.

Here is a website I found re. this award:

http://www.hcpl.net/kidsite/kidsread/schneiderfamilybookaward.htm

There are some great books listed there, thanks, Linda.

Joyce, Stasia told me that you were the one who recommended the book to her! BIG thanks to you!

Here is my review of Marcelo In the Real World by Francisco X. Stork.



Many thanks to Stasia for recommending this poignant, powerful, sensitive and heart warming book.

Seventeen year old Marcelo Sandoval is a very special person for many reasons. He is a highly functioning young man who has a form of asperger's syndrome.

Marcelo hears music known only to him. He also obsesses in learning about religion. One of his mentors is a delightful female rabbi who listens and understands. Through their relationship, the author allows us inside the beautiful mind of Marcelo and his thought processes.

Shielded at a private school for individuals with learning disabilities, Marcelo's lawyer father forces Marcelo to expand his awareness and to work one summer in the "real world."

Demanding that Marcelo work at his law firm, his father faces severe repercussions when Marcelo's experiences are not the path of transformation he expected.

When Marcelo is befriended by a lovely female co-worker, Marcelo learns to trust his ability to study facial movements and nuances. Initially unable to put an emotion with an expression, Marcelo's world changes when he finds a photo of a young girl with half a face. Compelled to learn about this girl, Marcelo seeks the help of his new found friend Jasmine.

When he learns that his father is the lawyer defending the company that knowingly manufactured defective windshields resulting in maiming the woman in the picture and many others, he choices to make an ethical decision with far reaching consequences.

His quest sets a series of motions in place and in doing so, Marcelo is forever changed by experiencing the fact that the real world is filled with suffering, injustice, greed and ill will.

Marcelo also learns that the outside world contains a different kind of music, as powerfully lovely as that heard inwardly. In risking and trusting himself, Marcelo does more than come of age, he enhances what he already was -- a sensitive, loving, beautiful man.

Highly recommended!

I read Marcello in the Real World last year, it is really good. There comes a point in the book when there is a question of whether Marcello's problems have anything to do with autism or not, but I think it does bring the legitimate issue of this being a complex spectrum of disorders, there is a range of issues to deal with.

I also just read Kathryn Erskine's Mockingbird which is a children's book that deals with a multitude of issues. Very good read.

#33,35 That book looks fantastic! Definite add-on to my Ever-Expanding List!

36-40 Marcello in the Real World is one I definitely need to read.
Wonderful review, Linda!

41 Welcome, Ceruleanfleur! I loved Mockingbird.

Another middlegrade/YA novel that I had forgotten about is Siobhan Dowd's The London Eye Mystery, the main character has Asperger's Syndrome. The book won several awards.

There seems to be quite a bit written these days about aspergers. Mark Zuckerberg even came off looking kind of
"aspergery" in The Social Network. I wonder if it makes those of us whose children aren't that high functioning hope for things that aren't possible. I doubt my grand nephew will ever be able to live independently. I hope I'm wrong, but it doesn't look like his life is headed in that direction.

I've starred this thread and will be checking in once in a while.

I read Al Capone Does My Shirts this month and liked it ok, but The Curious Incident of the Dog in the Night-Time, which I read in in 2008, is an all-time favourite/5 star for me and I wouldn't mind re-reading it. I'd like to read some of Temple Grandin's books, and might pick up Marcello in the Real World soon too. Of course, I won't be reading wall-to-wall books on the Autism spectrum this month, but it's something I'm always interested in learning more about.

I recently read Look Me in the Eye by John Elder Robinson. I found it fascinating! It was both heartbreaking and hilarious at the same time. It is the memoirs of the author, and I was able to find a few short interviews of him on you -tube. John Elder Robinson lives with high functioning aspbergers, and I found it so interesting to read his book on one hand -and see the seemingly emotionless bland looking man speaking on camera. Such a contrast to his book. I felt I really learned a lot about Aspergers.
33= That looks like a very interesting book.

Thanks for starting this thread, Terri. So many good books have been recommended - many I want to read, some I have in my TBR. I guess there is not a better month to start some of them.

I just read House Rules today and although I thought it was an interesting story, it wasn't my favorite portrayal of a character with aspergers/autism.

Two non-fiction books that I haven't seen mentioned yet are:
Nobody Nowhere & Somebody Somewhere by Donna Williams. She wrote aboout her experience growing up with autism. I enjoyed both.

#43 Kerry, I'm not familiar with that one. I'll have to look it up! Thanks!

#44 You have a valid point there. There does seem to be less written about those with more profound levels of autism.

#45 Curious Incident was a favorite of mine, too, Ilana!

#46 Our library recently got Look Me In the Eye, and it's one I want to read.

#47 Jess, I read Somebody Somewhere years ago from the library. I've been meaning to read more of Williams' writings.

Hi Terri
I was just trying to tag the books we have in our college library that have autistism or aspergers as a theme and/or character and chanced on this thread, which has proven to be useful.

I have recently purchased the non-fiction book Freaks, geeks and Asperger syndrome : user guide to adolescence by Luke Jackson but have only had a chance to flick through it so far. This is written by a teenager with Aspergers and seems very down-to-earth & practical.

I recently read House Rules by Jodi Picoult and while the book has a very large hole in the plot that is necessary for her to create the ending she does (from about 1/3 way through I was saying "why has no-one just asked him what happened??) and it is written by someone not on the spectrum, I believe that like Curious Incident and many others it useful to help those of us who aren't on the spectrum appreciate what life may be like for those that are, just as I can enjoy historical fiction written by those in the 21st century.

It think it's important for us to remember when reading fiction that it is one character's story, and not intended to portray what life is like for ALL with asperger's/autism. I have purchased House Rules for our library and recommend it to our teachers- just to get them thinking.

I finished Be Different: Adventures of a Free-Range Aspergian with Practical Advice for Aspergians, Misfits, Families & Teachers by John Elder Robison and it does indeed offer practical advice. I love this passage, which is the essence of the book:
That's the nature of Asperger's -- it produces what psychologists call "developmental delays" We're slow to pick up some social skills, and we'll never be perfect at using them, but most of us can learn enough to get by. While all of us grow and develop our entire lives, the pace of development slows down for most people in the late teen years. That's when those of us with Asperger's get our chance to catch up. Catching up may be a lot of work, but with sufficient focus and resolve it can be done. So a kid whose social sills were way behind his peers in seventh grade may end up being just a little eccentric in college, and downright popular in middle age."

He talks about the fact that areas of special interest are a part of the Asperger's condition and that while a child's talking about dinosaurs for hours on end can drive a parent up the wall, that same interest in an adult leads to competence and that competence is the way to success and friendship. It's a very helpful and encouraging book that I would recommend.

That book sounds terrific, Joyce!

#49 Thanks for the input, kiwi-reader! I had wondered about Freaks, Geeks and Asperger Syndrome. Sounds promising!

#50 That definitely sounds like one I'll want to read, Joyce!

#51 Hi, Madeline!

> 52,

Hi Terri!

> There's seriously a book called Freaks, Geeks, and Asperger Syndrome? Funny. I should read it.

I have finished Autism and Asperger Syndrome edited by Uta Frith. It includes the complete translation of Hans Asperger's original 1944 paper. The readability varies between chapters, but overall a very informative and well-written book.

I finished Born on a Blue Day and was impressed both by the excellent parenting of Daniel Tammet's mother and father in supporting his distinct needs and also the courage he showed in leaving the comfort of his beloved routine to travel to foreign countries. I'm beginning to nourish a little hope for my grand nephew's future after all. Maybe that's what all these books on autism do, they show us the value of diversity.

Joyce, just reading books such as these has given me new insights into "off" behaviors of individuals in general. We really need to look beyond our first impressions, if somewhat negative, to try to understand individuals, both those on the autism spectrum as well as those not. I, too, found Born on a Blue Day to be a very inspiring book.

#54 It seems to be pretty highly-rated and got good reviews, too!

#55 I should look into that one!

#56 That is on my "must read" list. I think our library copy is out on ILL, but I'll get to it soon!

#57 Absolutely, Madeline!

I just finished this book:


Title: Up High in the Trees
Author: Kiara Brinkman

Many thanks to Linda (Whisper 1) for this unusual book about an unusual boy. This story's narrator is young Sebby Lane, who is trying to make sense of life in his crisis-striken family. A number of reviewers / blurbers describe Sebby as autistic. The book itself never labels him thus. He does clearly have many characteristics of the Autism Spectrum, though he also expresses some thoughts that would be very uncharacteristic of someone on the spectrum. Of course, it's a spectrum -- nobody has all the possible traits.

I found myself drawn into Sebby's story through his eyes which see the world in a unique way. This is a quick read. While the book weighs in at over 300 pages, many of the pages are not full. Sebby tells his story in bits and pieces, so there is a lot of "white space" on many of the pages. Sebby's voice takes some getting used to, but by the end of the book I felt like I knew him -- and he seemed one of the most "normal" people in the book. Some aspects of the family situation seemed a little implausible at times, but the story worked.

A thought-provoking story.

>57 SqueakyChu: Madeline, I think a major idea I have garnered from the two books on autism I have read this month is that the concept of a "normal" or ideal person is erroneous. There are many ways to live, and as Daniel Tammet and John Elder Robison show us, some ways that we might find very restrictive or odd can work well for others. It seems to be an ongoing problem of humanity that we have a hard time seeing a different life as a life with quality. And I guess that's one reason I read.

I'm feeling bad that not only have I not read anything on this theme, but I have yet to request anything from the library. ***goes to fix that***

Look Me in the Eye is a remarkable book; fascinating, and very, very useful for people with Asperger's and their families. After my husband was diagnosed, I started reading everything I could; Robison's book is by far the most compelling and useful so far. I'm going to see him talk tonight, and I'll be buying the book, too!

I haven't read Look Me in the Eye but after glancing over the book page it looks to me as if John Elder Robison is Augusten Burroughs brother, is that right? Oh my, one never would have guessed. I've read most of Burroughs stuff, and like it, but I sure don't see a similarity.

There are some marvelous points being made here!

Look me in the Eye is headed onto my must-read list, too.

I just finished this book:
God Plays Piano, Too: The Spiritual Lives of Disabled Children, by Brett Webb-Mitchell.

I read this for Autism Awareness Month because it was tagged by many with "autism." In reality, only a few chapters dealt specifically with kids with autism. Indeed,, Webb-Mitchell's understandings of autism seemed limited and understandably a bit outdated (given that the book was published in 1993). However, I think there are principles discussed throughout the book which can apply to kids with autism.

Webb-Mitchell is an ordained pastor who has always had a special interest in how disabled children experience God and spirituality. His experiences demonstrate religious awareness in disabled kids whom society (and, unfortunately all too often, the church) dismiss as lacking the capacity for religious awareness.

The best part of this book are the stories he tells about the kids. Occasionally, Webb-Mitchell's commentary felt a little tedious, but he made some good points.

The focus here is mainly on conventional Judeo-Christian religious traditions; though some of the youngsters had understandings of those concepts that might seem "strange" to traditional thinkers, there was little here of any alternative spirituality.

Good food for thought for religious leaders and others in churches and synagogues who would like to open their congregations to meaningful ministry with people with mental, emotional, behavioral, and developmental disabilities.

Has anyone read Daniel Isn't Talking? Is that a worthwhile read?

I really enjoyed Robison's reading last night; he combined stories from his own life with a discussion of his new book, and how his focus had changed. With Look me in the Eye he wanted to entertain and to use his articulacy to communicate his experience of autism and Asperger's to the world. Many people on the spectrum can't do that, and this is information that needs to get out.

People have since come up to him and asked him why he didn't address some aspects of the autistic experience - overstimulation, for example, or sensitivity to certain kinds of clothes. He said to us that Look Me in the Eye was a 'first date' - and what do you talk about on a first date, your funny stories from childhood, or your issues with underwear?

His new book, Be Different is intended to be more encompassing, and, indeed, contains a chapter entitled "Underwear With Teeth".

He also promotes his own successes in modifying his behavior; he says he is just as 'Aspergian' as he ever was, but he is far less disabled by it than he used to be, because he's learned how to interact with people in a more 'normal' way. He suggested we compare his talk tonight with a video interview from four years ago, where he was a "talking robot". Heck, he has friends now.

This is controversial. Several people raised the same question with him during the Q&A session that followed: should people with Asperger's have to accommodate social norms? Should someone feel they have to "pass" as neurotypical?

Robison's replies were well-thought out, and probably practiced, after all the public speaking he's done. No, no-one should have to "pass". He applauded the plans at Google (full disclosure: they're funding some of his book tour stops) to create jobs that people can fill regardless of hours or interpersonal skills. He wants a future without discrimination.

On the other hand, many Aspies can't or don't want to wait until society catches up - it's liable to be a long road. Asperger's is an invisible condition, and people easily assume you're just a jerk who's intentionally ignoring etiquette. For Aspies who can't or won't wait - who want to improve their employment prospects, friendships, and relationships, he believes they can make their lives better tomorrow by learning certain skills.

As a very neurotypical person, I don't think I get to say what people on the spectrum "should" do. I can understand someone who says "this is me, and everyone else is just going to have to deal." I can also understand someone who jumps at the kind of advice Robison is giving. Asperger's can keep people lonely and poor. Most of us learn the rulebook that lets us negotiate society by osmosis, but having Robison lay it out in his book will be very handy for many people.

#64 I glanced through it once, Madeline, but not closely; what I saw didn't particularly appeal to me at first glance, but I can hardly judge it by the few moments I spent with it. It's gotten some good reviews, which is why I looked it up in the first place.

#65 Sounds wonderful! I'd better get reading on Look Me in the Eye, so I'll be ready to read the new one, Be Different! Let me add, I really liked the last paragraph in your post.

> 66

Well, I was interested in reading more books about the autism spectrum, and I have the book Daniel Isn't Speaking. The thing is that I'd rather not read fiction about this topic just yet. Yeah. Glancing at it didn't motivate me to read it either.

I'm really more fascinated by facts as presented in memoirs or biographies. I'm still trying to get hold of any of the books by Temple Grandin.

> 65

Thanks for sharing the information about the author reading. It sounds extremely interesting. I'll be on the lookout for Robison's new book.

>66 tymfos: Thank you, tymfos!
>67 SqueakyChu: It was interesting; I'm looking forward to reading it, too.

I just finished Look Me In the Eye, and I thought it was great!

for Autism Awareness Month, Autism Now is running a series during the PBS Newshour every night this week. Tonight's topic was Autism as a Full Body Disorder. It's very interesting. Here's the site concerning the series: http://www.pbs.org/newshour/rundown/2011/04/viewers-guide-autism-today.html

I just finished The Ride Together and found it more pertinent to my grand nephews condition than the other 2 books I've read for this challenge. This is a strange book, 1/2 straight memoir by Judy Karasik and 1/2 graphic memoir by Paul Karasik about the family of a man on the more incapacitated side of the autism spectrum and the difficulty in finding a place for him where he can grow and contribute to his community. It's definitely not a feel good book; the ever present possibility of abuse in institutions that care for people who can't speak for themselves is examined. David, the autistic brother, who is in his 50's now spends a small part of the book in his pajamas, but for the most part he dresses in a suit and tie. He has a very strong need for routine and reminds even his sister of the Dustin Hoffman character in Rainman but without, as she puts it, the "plot devise" of savant mathematics. He is held hostage to frustration which sometimes leads to violence against himself or others. In describing the aftermath of a meltdown, Judy writes He was calming down. Slowly, the autism let go of the frustration. The autism stopped battering my brother with frustration and went back to its usual habit, which was fascinating David with the patterns and images and ideas inside his head. What a perfect description of his condition.

Since David is so old he hasn't had some of the more recent advantages my grand nephew has had, but still it seems that with his sometimes frightening propensity for violence he represents more what we are facing than do the stories of Daniel Tammet or John Elder Robison.

Although I haven't yet read a book about autism this month, I have done so in the recent past. I was curious about the tendency toward violence exhibited by those on the autim spectrum. What treatment is used to deal with this?

The Karasik's were very pleased with the ability of one of David's institutions to decrease his violent outbursts. Only later did they find that the institution was abusing patients. So, meeting violence with violence seemed to work in his case. I would think the optimum way would be behavior modification, that seems to work with those higher up on the spectrum. I wonder if medication is used also. Nothing is working 100% on my grandnephew so far.

I don't know if anyone saw the Nightline special on Carly - but here is her website: I find her story interesting...

http://carlysvoice.com/

Behavior modification -- particularly ABA, or Applied Behavioral Analysis -- is pretty standard for dealing with many types of behavior issues with autism, including aggression. Also, understanding and dealing with the underlying triggers can help -- if a person tends to melt down because of sensory overstimulation, sensory integragion therapy by a qualified occupational therapist seems to help for some.

Studies are mixed and not really promising regarding medications that work with autism -- the best that current meds can do is to combat symptoms -- but as I understand it, Risperidone has been shown in some studies to help curb aggressiveness in some people with autism. Last I heard (and I may be outdated on this), it was the only drug specifically approved by the FDA for use with autism. (Other meds are used, but it is what they call "off-label" use.) With my son, it helped stop his meltdowns AND seemed to make him a bit more sociable. He just seems more comfortable in his own skin since the doctor prescribed it.

(Note: I am not a doctor and this is not intended as medical advice.)

It's nice to see how behavioral and medical therapy can be combined to allow an individual on the autistic spectrum to "adapt" his own behavior to that of a more social norm so that he or she can begin to form more meaningful relationships with others. One of the things that I've learned from my reading about autistic spectrum is just that. Much adaptation and future success depends on an individual's ability and willingness to "learn" adpative behavior. It seems so hopeful.

I'm about to start Unstrange Minds: Remapping the World of Autism. The center of this autism focus for a change is the author's daughter. So much of what is written about autism focuses on men and boys, it'll be interesting to concentrate on a girl for a change. I wonder if the tendency for aggression is as strong in them. The book was published in 2007, so I wonder how outdated it is by now.

Thanks, jayde1599, for posting Carly's site. Fascinating. And it answered my question. It looks like girls can be just as aggressive as boys. I can't imagine the effort those parents put in to getting Carly where she is today.

I finished Al Capone Does My Shirts, a novel set in 1935, before the diagnosis of autism had been devised. It's a YA novel but very powerful in the way it asks how much sacrifice a parent may require of one child in search of help for another. That's a problem many parents of disabled children face daily.

#76 Things are certainly more hopeful for those on the autism spectrum than was the case 20 years ago, Madeline!

Citizenjoyce, you're doing some great reading! I am particularly curious to read your remarks about Unstrange Minds.

I just finished reading Oliver Sacks' book An Anthropologist on Mars. The title essay was about Temple Grandin -- based on how she described herself and her lifelong quest to understand and, to some extent, imitate the social behavior of neurotypical people. There was also an essay, Prodigies, which highlighted a young artist who is an "autistic savant." The book contains essays about people with other unusual neurological conditions, too.

Since the book was written in 1995, some of Sack's attitudes and info regarding autism are a bit dated (the stats about frequency of occurrance, for instance.) Still, the essay about Dr. Grandin is quite fascinating.

I'm finding Unstrange Minds to be an very interesting read. Here's an idea new to me. When Leo Kanner established the diagnosis of autism he also theorized feral children might be autistic children who had been abandoned in the woods and found after a few days by people who assumed, from their autistic characteristics that they had been raised by animals. That seems to me a possibility that I never would have thought of myself.

That's an interesting point!

I finished Developing Talents: Careers for Individuals with Asperger Syndrome and High-Functioning Autism, by Temple Grandin. A lot of this information was geared to people whose autism is a bit higher functioning than my son's. However, there were still plenty of useful pointers, and even some affirmation for directions in which are pointing as to what he might like to do for a living.

I finished Unstrange Minds and it brought up sides of autism I knew nothing about. It was published in 2007 which means it was written at least a year before, so some things may have changed. He discusses the incidence of autism in several countries around the world. In a country like India with a large and very rich (and poor) population, there are very few child psychologists and autism is seldom diagnosed. In a way this is bad for the mothers raising autistic children, but in a way they are glad not to have this diagnosis (which they realize might have a genetic component) because a fear of an inherited disorder could cause not just the shame on the family that the diagnosis of retardation or madness might, but also would make it difficult to impossible for the rest of the children in the family to marry. Korea is the same or even worse. There are more psychologists and psychiatrists there but children are the pride of the family and a damaged child leaves the parents with nothing to be proud of. There is little treatment for autism, and even if it were offered, the parents would refuse. They don't want treatment that helps with symptoms, they want nothing less than a cure. When the author suggested that there are antidepressants or sleep aids that could help make the child better adjust to life, there is no request for them. In a culture that so values authority people often don't know what medication they take because until recently medicine bottles weren't even labeled.
Grinker describes the cut throat education system in Korea Children with autism may go to school, but they are sat by themselves and not assisted to learn. In fact, the culture as a whole expects children to go to school, but doesn't expect them to get much education there. The real education is by private classes that may continue until 1 in the morning, and autistic children are not welcome there. I shuddered at such a system until I reflected a little on what is going on in the US. Governors are gutting the public school system in order to balance state budgets. If our kids want to learn art, music, a foreign language, science, even PE they have to go to a private school or take outside classes. In my city 3 schools have even dropped their librarians in order to save money. So when Grinker talks about spending $50,000 to hire a lawyer to force his public school to hire a one on one aide for his daughter (at $20,000 a year) I wonder how public schools can possibly do best for all their students.
One last thing, Grinker talks about the damage done to families, parent to parent, parents and their children, in-law relationships by Bruno Bettelheim and his ilk all over the world who have blamed autism on the cold rejecting mother. Often the first thing families hear when an autism diagnosis is made is that the mother should quit her job. And France, lovely France is among the last of the countries to get over this concept of refrigerator mothers.
There was some hope in the book. Grinker talks about how the idea acceptance of diversity as a positive value works to improve the whole society of the US. In Korea standing out at all is discouraged, which makes getting help for autistic children very difficult. But here, accepting autism as another variation of human experience helps us accept our own humanity and the struggles we all face to find purpose and joy in life.

Thank you for your post about Unstrange Minds. Not sure what to say. Much there sounds very distressing.

Re: Bettelheim's impact -- I visited the Carnegie main library in Pittsburgh shortly after my son was first diagnosed in 2000, visited the social sciences area, and searched the catalog for "autism." At that time, the first book that came up (alphabetical by author) was Bettelheim's. I was furious -- I already knew about him, but what about someone knowing nothing about autism, going there and finding that book first? I spoke briefly with a library assistant who knew the history, and felt that the book should be categorized somehow in the history/evolution of medical/psychological thought, rather than a straight Autism subject line.

The only time I ever deliberately destroyed a book was when I found a copy of Bettelheim's Empty Fortress in a used book store. I bought the book, informed the seller of the damage that the lies in that particular book had done over the years, took it home, and ripped it to shreds. I'd never thought I could take satisfaction in destroying any book, but in that case I did.

> 83

Very interesting...and sad. Thanks for sharing what you've learned from your reading, Joyce.

> 84

...which only makes me curious about that book, tymfos, but I hear what you're saying.

> 83 I have Unstrange Minds on the wishlist. I am especially interested in the multicultural perspective. Thank you for the great review; I am looking forward to reading it.

I finished Autism's False Prophets and was very fascinated, yet saddened, by all the greedy controversy.

#86 I guess hindsight is 20/20. It's common knowledge now that autism is a physically-based disorder -- that there are genetic components and actual physical differences in the brain and perhaps body chemistry. I suppose when Bettelheim was writing, he really believed that autism was caused by bad parenting. But as knowledge about autism increased, it took many years for popular opinion to "unlearn" Bettelheim's theories, and I understand that he himself was unwilling to accept new ideas even when they were backed by physical evidence. The result was incredibly painful for mothers of children with autism; plus, much energy was wasted in trying to "fix" the mothers instead of helping the children.

I came into the autism community as people were gaining more knowledge and being less judgmental of mothers; but I know of many families of adults with autism where Bettelheim's theories caused incredible damage over the years.

I'll make a few last disparaging remarks about Bruno Bettelheim. As a Holocaust survivor himself he knew the full implications of the things he said about mothers of autistic children, yet for some reason he said them anyway.

He went on to compare autistic children to Nazi concentration camp prisoners. He suggested that a variety of psychotic responses can be caused by the feeling of being unable to escape from a situation in which one's life is in jeopardy and completely outside of one's control. Not all people responded in the same way to this situation, he argued, but people with autism and some concentration camp victims responded by developing an inappropriate and shallow affect, by engaging in little or no eye contact, and by closing themselves off to the external world...Bettelheim thought the primary difference between people with autism and the prisoners was their prognosis. Adult prisoners (that is, people with fully formed personalities) could recover from the abuse by drawing on the years of memories and experiences before their imprisonment, but children with autism had been abused from the start and were never given half a chance to build their capacity to fight the hate. Of one mother of an autistic boy, Bettelheim wrote, "The only real difference between the SS guard and the mother of the autistic child is that the mother gets to the child much earlier in life."

The damage he has done to families is beyond measure.

Thanks for the review of Unstrange Minds, I added it to my wishlist. The discussion Bettelheim has been interesting...I don't know much about him, but I am familiar with the implications of his words. Thanks for sharing.

@ 46, Yes! Look Me in the Eye was fantastic! It is interesting to note for memoir readers out there that he is Augusten Burroughs' brother.