Teen Autism

This astounding book was written by Tito Rajarshi Mukhopadhyay, a non-verbal autistic boy whose mother taught him to write at the age of five. He wrote The Mind Tree between the ages of eight and eleven, and it is nothing short of amazing.

The first half of the book is a detailed autobiographical account from age two to eleven. Tito writes in the first person point of view, but uses the third person when referring to his younger self (for instance, “It was a worse show when he was three and a half years old.”) He also describes the thoughts and feelings of his parents in many situations, exhibiting a surprisingly advanced theory of mind. One of the delights of this book is Tito’s insight and his ability to explain some of his autistic behavior, such as analyzing why he spins. He says that his body felt “scattered and it was difficult to collect it together. He saw himself as a hand or as a leg and would turn himself around to assemble his parts to a whole.” And “He got the idea of spinning from the fan as he saw that its blades were otherwise separate joined together to a complete circle, when they turned in speed.” Tito also describes the “distorted . . . meaningless babblings” that he made, and suggests to “guardians” of other autistics that they discourage those sounds, claiming, “Being mute is better than distortion.” Later, he tells about how his mother helped him to “find” his voice by physically forcing it out of him via pushing on his back as he attempted to verbalize sounds. I found all of Tito’s detailed descriptions of his childhood to be intensely fascinating.

Equally wonderful are the remaining parts of the book, including a section of essays written about his interpretations of color and how they manifest themselves in his autistic mind. Tito also writes beautifully crafted, evocative poetry, such as “All the world was a busy place, And I was an idle kind, Disqualified in the human race, A different form of mind.” We readers are also treated to the lovely imagery of his short story called “The Mind Tree,” which is a touching tale told from the point of view of a tree.  Tito is truly a gifted writer.

This book is quite a find. I stumbled upon it in a bookstore a few years ago, and I am drawn in each time I read it. Tito’s message of hope is evident in every word he writes, but especially in the ending to his first biographical section, which he wrote at age eight: “One day I dream that we can grow in a matured society where nobody would be ‘normal or abnormal’ but just human beings, accepting any other human being - ready to grow together.” His words certainly prove the maxim that not being able to talk does not mean the same as not having anything to say.

The subtitle of this insightful yet practical book is “Autism as a Source of Wisdom,” and author Olga Holland offers that and more. Many autism-parent memoirs are beautifully thought-provoking, and enjoyable to read, but don’t present much in the hands-on, getting-through-the-day department. The Dragons of Autism eloquently and effectively addresses both of these areas.

Holland possesses an analytical mind which enables her to invent and apply various approaches to managing her son’s behavior and helping him adapt to situations that aggravate his sensory issues. She is no stranger to meltdowns (called tantrums in the book), having dealt with her son’s episodes that occurred several times a day. A large portion of the book is devoted to damage control strategies as well as possible prevention techniques. She discusses the technique of Buying Time as a long-term method of re-training problematic behavior or enforcing house rules (such as bedtime). Holland goes on to describe the importance of schedules and having rituals to enforce them. She empathizes that yes, it is time-consuming for parents of autistic children to organize and maintain a schedule in written form, but she advises, “Look at it as a craft - a part of the craft of raising an autistic child.” I think that’s the perfect way to describe it - a craft that we become better at as the years go by.

Holland includes plenty of descriptions of her son’s characteristics and behavior, and I found it both engaging and affirming to recognize so many of them in my own son, as I’m sure many parents would. This book is helpful not only for parents of younger autistic children looking for ways to manage meltdowns/tantrums, but also for parents of older autistic children. Most of us still have to deal with meltdowns, even though now they may occur for different reasons than when our children were younger. Holland provides effective strategies using empathy and creativity that are both helpful and humane. I’ve referred back to this book many times in the five years that I’ve owned it, and will continue to. It’s a good read.

I couldn’t wait to reread this book to write the review. That’s how much I love it.

Author Mark Haddon has created, in my view, a realistic fictional autistic teen with an amazing way of describing the life and people that surround him. But what I love most about the book is how much the main character, 15-year-old Christopher, reminds me of my son Nigel (aside from the fact that Christopher is incredibly good at math, and Nigel is at the opposite end of that spectrum). I love experiencing Christopher’s usually detached observation, his mannerisms that are so close to home for me. I could identify with the intense love coupled with the equally intense frustration that his father feels raising him alone. When I read Christopher’s thought processes (portrayed so well by Haddon), I recognize what Nigel has been able to convey to me about his own.

I love reading about Christopher’s determination to do things himself, which reminds me so much of my son. Christopher’s love of animals is touching and also familiar, as are his attempts to understand the complexities of emotions and his need to always give the exact minute when telling time. He tries hard to manage his sensory issues and asks people for help when he needs it. He is persistent about the things that are important to him, like taking a high-level math test, and being a detective.

I won’t say anything about the plot of the book because it is so captivating; the only way to appreciate it is to read it and experience it yourself. And besides, it is a mystery. I wouldn’t want to spoil it. Christopher points out at the beginning, “This is a murder mystery novel,” and in trying to solve it, he discovers another one that changes everything. The Curious Incident of the Dog in the Night-Time is tender, moving, and beautifully written. It’s also a quick read, which is good in a way, because you’ll want to read it again and again.

Luke Jackson, the thirteen-year-old author of this book, says he wrote it because “so many books are written about us, but none are written directly to adolescents with Asperger Syndrome. I thought I would write one in the hope that we could all learn together.” And he does an amazing job of appealing to his peers in a colloquial manner.

I bought this book because I thought that Nigel, as a mid- to high-functioning autistic teen, would understand it and benefit from it. We read it together, so that we could discuss it as we went along. Jackson is English, so I occasionally had to “translate” a few words and phrases for Nigel, such as “fancy” for liking something. As we read, many times Nigel’s attention wandered, I think because he found Jackson’s writing style a little hard to follow. But then, Nigel does not have Asperger’s. I have often read that many people view Asperger’s as high-functioning autism, but there are many differences, which I will discuss in a future post.

Back to the well-written and enlightening book. Jackson’s style is almost precocious at times, but effective. He begins by introducing his close-knit family of seven children and their mother. (There is no mention of his father, that I recall, and I felt dizzy at the thought of parenting seven children alone.) It was interesting to read about their background and personalities. Jackson moves on to a description of Asperger’s and discusses the pros and cons of telling others about it. He relates that when people don’t know he has AS, they refer to him as a freak, but when they know about it, they are tolerant.

Next is a discussion of obsessions, which he calls “specialist subjects,” and compulsions. (Nigel was only vaguely interested in this section, which tells me that he does not think of himself as having obsessions.) For the compulsions, Jackson speaks to any parent readers by suggesting that they try to control their child’s compulsions with rewards.

The following three chapters concern sensory perception, physiology, and sleep, and Nigel managed to extract some helpful tips for himself. In the area of sensory perception, he agreed that looking at someone while they are talking is often difficult, and he liked Jackson’s suggestion to look at people’s mouths when they’re talking, which is close enough to making eye contact. Of the many suggestions that Jackson made in the sleep chapter, Nigel liked the following metaphor: “My room and my things are familiar, my security. The dark creeps in and steals that familiarity and security away.” Nigel also agreed that listening to relaxing CDs and music, something that Jackson mentioned, helps him to sleep. The section on physiology discussed, among other things, the GF/CF diet, which was not helpful to us, but certainly has been for others.

Next Jackson writes about language difficulties, dealing with slang and idioms, and suggests to parents that they write out steps to complete a task (which I also find immensely helpful) and give clear and specific instructions. The next chapters deal with school problems and bullying. In the school problems chapter, Nigel identified with the fact that writing with a utensil actually hurts his hand, and this was the first time that the problem registered in my mind. The bullying chapter had some tips for dealing with bullies and stressed that it was important to tell someone. Jackson then mentions Taekwondo for self-defense, as well as the many other benefits it provides.

The next three chapters dealt with friendships, dating, and morals and principles. Nigel is just getting interested in the topic of dating and has been asking questions, so this book helped a lot in that area. The “morals and principles” chapter also was beneficial in that it stressed not to let people entice you to do something that is wrong, that you don’t need friends like that. It reinforced what I tried to teach Nigel at the end of the last school year.

The end of the book has a nice positive note about AS people being amazing in their own ways, even if not savants (after a discussion about the movie Rainman). It is certainly amazing for a thirteen-year-old to write such an organized, insightful book. We found it very helpful, including the appendices on idioms (with definitions of being “on cloud nine” and “don’t cry over spilled milk”) and references for further information (books, websites, and organizations). All in all, a worthwhile book for parents and kids alike.

Ten years since its initial publication (1998), Targeting Autism is in its third edition, a testament to the book’s importance and author Shirley Cohen’s excellent writing. I about cried with relief when I saw this book on the store’s shelf back in 1998. I needed something to help my extended family understand autism and what we were dealing with. I also needed something for myself that would give me a better picture of what to expect for my son’s future. Targeting Autism addressed both of those needs and more.

My first-edition copy is dog-eared and filled with underlined passages. It certainly made the rounds among my family and friends during the early years of my son’s diagnosis! I took a look online to see what changes had been made to the later edition, and it appears that Cohen provides specifics about new developments in the world of autism (including an appendix listing diagnostic criteria for Asperger’s, which was not widely known when the book was first published). Aside from those additions, the book still follows its original outline, starting off with a general description of autism and how the manifestations of it are so varied. It mentions hyperlexia (which my son exhibited) and other unusual abilities, and also compares autism to disorders such as Landau-Kleffner syndrome, Fragile X, and obsessive-compulsive disorder. The next chapter features insightful quotes from autistic individuals who describe what it is like to be autistic and how they felt growing up, fearful and unable to communicate, and later learning about emotions and social expectations. Following that is a chapter about how development progresses at various stages of life: infants and toddlers, preschool, middle childhood, adolescence and young adulthood. It discusses behavior patterns, sensory issues, echolalia, and language development, among other subjects. Here, Cohen inserts many quotes from parents about their autistic children at various ages and levels of severity, which is quite helpful. The next chapter specifically addresses family issues: the stress on parents and siblings and the importance of a support network. 

Part Two discusses treatment. The first chapter highlights the Lovaas treatment: intensive, 40-to-60-hours-a-week behavioral therapy once thought to be the road to recovery. However, as Cohen ends the chapter, “A distinguished psychiatrist . . . replies that in his contact with over eight hundred individuals with autism he has never seen a person who has recovered. What he has seen is symptom remission with near-normal functioning.” The next chapter mentions other types of less extreme behavioral and nonbehavioral treatments, such as mirroring and reciprocal play. It gets a bit technical while discussing the various intervention therapies and educational programs, including TEACHH (Treatment and Education of Autistic and Related Communication-Handicapped Children) and how it compares to the Lovaas method, but it is essential for parents wanting to know what is out there, so that they can continue to do their own research. The following chapter addresses the issue of treatment availability and funding, and the general topic of advocacy, and the last chapter of this section discusses various alternative therapies, such as supplements like B6 and magnesium and GF/CF diets, auditory integration training (AIT), sensory integration, and facilitated communication.

Part three begins with an interesting commentary on recovery and the different ways it can be interpreted and defined, including a discussion about the Son-Rise program. The final chapter of the book, Moving Toward Better Answers, discusses the future of autism research, treatment (including medication), and public resources. Overall, Targeting Autism is an impressive proponent of advocacy. Cohen ends by stressing educational planning on an individual basis, especially to meet the needs of adolescents and adults so that they may lead productive and satisfying lives.

I highly recommend this book. Even ten years after I first read it, I still pick up something new and valuable each time I reread it.  

Everybody Is Different , by Fiona Bleach, is a fantastic little book. At around 75 pages, it’s perfectly accessible for kids, as the subtitle indicates: A book for young people who have brothers or sisters with autism.  It’s written mostly in a question/answer format, divided into six parts: general information about autism, main characteristics of autism, odd behaviour (the author is English, hence the alternate spelling), sibling feelings, therapy and help, and a glossary at the end. It also features cute little illustrations by the author.

The book tackles some difficult questions, such as “Why do some people have autism?”, answering them in a way that kids can understand, without being too simplistic. One of the book’s strengths is that it not only answers questions, it also makes a point of discussing how the NT sibling feels and what they can do about it. This includes dealing with such emotions as anger, resentment, frustration, sadness, and embarrassment.   

My younger son, Aidan, and I have consulted the book many times regarding various subjects and found it to be helpful and encouraging. Aidan benefitted from reading about why his brother makes strange noises, why he says and does the same things over and over again, why he throws or breaks things, and why he hurts himself. The book also listed some good tips for maintaining privacy and how to respond to an autistic sibling who doesn’t know what that means.

Of the many attributes of Everybody Is Different, one that really stands out is the encouragement of NT siblings to talk with their parents and friends about how they feel. I also appreciated the positive suggestions for interacting with autistic siblings and explaining their behavior to friends or others who are unfamiliar with them. I highly recommend this excellent book for any family with autism.

Even when I had only heard the title of this book, I knew I would love it. I knew it would be the perfect book for me to read.

The approach of accepting autism would have been enough on its own for me to like the book, but Susan Senator’s writing is exceptional, and that is why I love this book. I laughed, I cried, I truly felt she’s been through the same trenches I have. She understands. And she exudes a level of empathy through her words that brought me more comfort than any other book about autism I have read.  

Senator opens with a situation that is all too familiar to many ASD families: something occurs that necessitates making a transition before the autistic family member is ready, and an outburst ensues. Senator drew me in with her description of what happened and how each family member was affected by it, and I certainly identified with all of it.

The book then continues in a chronological format, discussing her son’s early years, how he lined up his toys and stared at them while he sucked his thumb, which was exactly what my son did (although he sucked his index and middle finger instead of his thumb). She discussed her reaction to the diagnosis, going into depth about her emotions and listing all the questions that those of us who have been through it also asked. All the whys, hows, and what-do-we-do-nows. Senator includes a “sidebar” in this chapter called “Suggestions for Getting Through the Early Days, After Diagnosis,” which lists some helpful tips, along with other topics such as “Beginning the Healing Process as a Couple” and “Making Crisis Storybooks for Your Child,” known as ’social stories’ in some areas.

The following chapter describes the various early school programs in which her son was enrolled, and includes tips on preparing for IEP meetings, and what to look for with school placements. This information is invaluable for parents whose child has been recently diagnosed. I found myself wishing this book had been published in the 90s!

The next chapter addresses sibling interactions and traveling, including tips for successful family vacations. Following that is a chapter on sleep problems and the use of medication, with a thoughtful debate on whether to medicate or not. I found this chapter particularly helpful to me because I happened to be making a decision about putting my son on Zoloft right at the time that I first read the book. Basically, Senator urges parents to trust their instincts, which is something I must constantly remind myself, and educate themselves. The chapter also listed strategies for dealing with problem behavior.

The remaining chapters deal with more family issues, such as preparing for a new baby in the house and nurturing your marriage (which I read in a wistful way, mine having ended many years ago). The chapter also mentions important information about leaving your child with others and making sure to carve out time to rest.

At one point, Senator writes: “. . .we moved from grieving over his disability to over grieving what lay ahead for him.” This resonated with me as I made the decision to homeschool my son and deal with all the changes it encompassed. I found Making Peace with Autism to be empowering in the face of my own struggle.

My favorite part of the book is when Senator discovers that her son is trying to connect with her by laughing. I, too, made this discovery with my own son years ago.  My son’s annoying fake laugh is really the way he reaches out, wanting to have fun like everyone he sees around him. He is not completely closed off, in his own world. He has autism, but he is still there with us, interacting. Just on his own terms. It was so affirming to read that other families delight in this discovery as well.

I just leafed through the book again and realized that I had another “favorite part,” near the end. It was when Senator’s autistic son had his bar mitzvah: all the preparations they made, everything it meant to them, the happiness that flooded them with their extended family in attendance. So beautiful and inspiring.

I can’t say enough good things about this book. I think every family trying to come to terms with autism should read it. I also highly recommend reading Senator’s blog at www.susansenator.com. On it, she mentions that she just finished writing a novel. I can’t wait.