Censorship

Many autism parents have felt great frustration as the government seems to have little interest in pursuing why autism rates are rising rapidly, what causes autism, and what can be done to help those affected by autism. However, one Democratic congressman seems intent on making sure no one has access to information questioning potential connections to vaccines. Recently, U.S. Representative Adam B. Schiff from California sent open letters to the CEOs of Amazon, Facebook, and Google expressing his concern that these major Internet entities are promoting “products and content that discourage parents from vaccinating their children, a direct threat to public health.” [To read this letter, please click here.]

Describing these Internet sites as a “primary source of information” for many Americans, Congressman Schiff, indulging in hyperbole, urges these Internet companies to recognize their responsibility by not adding to this “growing public health catastrophe.” Apparently not trusting his constituents nor any other Americans to use critical judgment when seeking information online, Rep. Schiff wants to ensure any information contradicting the complete safety of vaccines is eliminated from Amazon and social media sites, including YouTube, Pinterest, and Instagram, as well as Facebook and Google. He worries that “even parents and guardians who seek out accurate information about vaccines could unwittingly reach pages and videos with misinformation” and be unable to make decisions for themselves regarding vaccine safety. By presenting only one side of the issue, he hopes to make all parents compliant in vaccinating their children.

Jumping on the pro-vaccine bandwagon, CNN business writer Jon Sarlin posted an online article, “Anti-vaccination conspiracy theories thrive on Amazon,” on February 27, 2019. [To read this article, please click here.] Like the congressman, the writer indicates concern for those who may not be able to think for themselves and wants to limit the information to only one point of view. He states, “But perhaps more disturbing from a public health and misinformation perspective, there were also books [on Amazon] that people simply searching for information––new parents, for instance––could mistake for something offering neutral information accepted by the public health community…” However, insisting upon banning books sets a dangerous precedent for our society.

Not surprisingly, when Amazon removed anti-vaccine documentaries from its streaming service, Amazon Prime Video, CNN gleefully reported this news and seemed to take part of the credit for this act of censorship. On March 1, 2019, Jon Sarlin wrote another article, “Anti-vaccine movies disappear from Amazon after CNN Business Report.” [To read this article, please click here.] While the reporter was pleased that Amazon had removed these videos, he expressed concern that Amazon continues to sell books offering an alternative position.

According to CNN, a Facebook spokesperson explained that they have “taken steps to reduce the distribution of health-related misinformation on Facebook, but we know we have more to do. We’re currently working with outside experts on additional changes that we’ll be announcing soon.” One wonders what constitutes “health-related misinformation” and what medical training these “outside experts” have. In a more decisive action to limit point of view, Pinterest announced a temporary ban to block all vaccine searches. Clearly, social media is acceding to the pressure put to bear by those who want only pro-vaccine perspective presented.

In another online article posted March 7, 2019, Wired describes changes Facebook will make. [To read this article, please click here.] In “Facebook Will Crack Down on Anti-Vaccine Content,” Louise Matsakis explains that Facebook has announced that they will no longer promote anti-vaccine information through ads or recommendations. Furthermore, they will make this topic less prominent in search results and news feeds, reducing the rankings of pages and groups that “spread misinformation about vaccines.” In addition, Facebook is examining ways to provide information from “expert organizations” regarding vaccines.  Similarly, Instagram will not recommend content or hashtag search results they deem as “vaccine misinformation.” This suppression of information should be worrisome to those who value critical thinking. As novelist George Orwell predicted, through government officials, the mainstream media, and social media that want to dictate what is “misinformation” and what is not, “Big Brother is watching you.”

To give Rep. Schiff his due, he probably has good intentions and believes that he is protecting those he deems not able to think for themselves. In his press release regarding his letters to the social media giants, he strongly asserts his faith in vaccines: “The scientific and medical communities are in overwhelming consensus that vaccines are both effective and safe. There is no evidence to suggest that vaccines cause life-threatening or disabling diseases, and the dissemination of unfounded and debunked theories about the dangers of vaccines pose [sic] a great risk to public health.”

However, Rep. Schiff apparently has not read the information on the government’s own Centers for Disease Control and Prevention’s website, or he would realize that evidence indicates the potential for vaccine harm. [To access this site, please click here.] Specifically, the MMR (Measles, Mumps, Rubella) vaccine can cause “deafness, long-term seizures, coma, or lowered consciousness, and brain damage.” The Varicella (Chickenpox) vaccine can cause “infection of lungs (pneumonia) or the brain and spinal cord coverings (meningitis).” The DTaP (Diphtheria, Tetanus, and acellular Pertussis) vaccine can cause “non-stop crying, for 3 hours or more (up to about 1 child out of 1,000)”; “seizure (about 1 child out of 14,000)”; and ‘high fever, over 105 degrees F (about 1 child out of 16,000).” In addition, the CDC site warns of the potential side effects with any vaccine: “As with any medicine, there’s a very remote chance of a vaccine causing a serious injury or death.” Clearly, vaccines are not as safe as Rep. Schiff and the media would like everyone to believe. Parents should be aware of potential risks––no matter what they are––before they vaccinate their children.

One even wonders why the media wants to remove the alternative views. In the Wired article, the writer cited information in The Atlantic that noted the “majority of anti-vaccination content on Facebook appears to originate from only a handful of fringe sources.” While I question that assessment, if they believe this to be true, they should have nothing to fear from a few they deem as unreliable sources. Moreover, despite Rep. Schiff’s concerns that anti-vaccine information is leading to a “growing public health catastrophe,” there appears to be no evidence of this impact.

As Louise Matsakis notes in the Wired article, “It’s not yet clear whether the proliferation of anti-vaccination content online has led to a significant decrease in vaccination rates in the United States.” Specifically, she cites CDC data that shows that the number of children under the age of three who have received the first dose of the MMR vaccine “has remained steady for years.” If, indeed, those anti-vaccine views essentially have no effect, why must they be silenced?

Until a definitive cause has been established for autism, nothing should be ruled out completely. In order to make informed decisions, we must have all the information, not just what politicians and the media have determined that people in our free society can know. We must have access to many viewpoints without censorship and continue to seek the truth. As Jesus said in John 8:32, “And you will know the truth, and the truth will set you free.”

“Then everyone who has eyes will be able to see the truth, and everyone who has ears will be able to hear it.” Isaiah 32:3

Book Review: Common Man, Extraordinary Call

After a child is diagnosed with special needs, many parents seek advice from others in similar circumstances who can share the wisdom of their experiences. In Common Man, Extraordinary Call, released last week and available from Amazon and Barnes and Noble, special needs dad Jeff Davidson offers an honest and clearly written guide for fathers of special needs children. As the father of an adult son, Jon Alex, who was diagnosed with cerebral palsy, intellectual disability, and nonverbal autism, he and his wife, Becky, generously share what they have learned. [Special thanks to Becky Davidson and Kregel Publications for providing me an advance complimentary digital copy of this book.]

Although he never served in the military, the author explains that he greatly respects those who have served our country. Consequently, he uses military terminology throughout this guide for fathers who have unwittingly been drafted into the troops of special needs dads. In each chapter, he offers practical ways to deal with issues through a section titled “Mission Critical,” in which he provides checklists detailing what needs to be done.

As he provides leadership to the dads on the front lines, Jeff Davidson explains the tactics in a casual, conversational tone that is reassuring. Sharing candidly what he has learned along the way, he reveals a keen sense of audience, engaging the reader through direct address: “You” and “Dad.” Moreover, each chapter ends with "A Story from the Front Line,” in which special needs dads share their own stories, or an “Encouragement from the Homefront,” a letter from Jeff’s wife, Becky, offering support to special needs dads. In addition, the book also provides a helpful study guide at the end, reviewing important points in the book, as well as thought-provoking discussion questions for further reflection.

One of the issues the author tackles in the first chapter is the problem of denial. In fact, he admits that he refused to say that his son had autism until three years after his son’s diagnosis. However, he notes: “When I finally accepted the truth, our world shifted, and life became easier.” Having struggled with denial himself, he strongly urges special needs fathers to ask God for help in accepting their circumstances.

In addition to asking God for help, the author also advises asking others for assistance when needed. Enumerating all the various roles fathers must play in providing for their families’ physical, emotional, spiritual, and financial needs, he understands that special needs dads may feel overwhelmed. While fathers may be reluctant to impose on others for help, he explains, “If we forgo their help, we are robbing them of the opportunity to be a blessing.”

Moreover, the author encourages special needs parents not to isolate themselves from others. While raising a child with special needs fills life with challenges, he urges, “We have to be willing to let people into our lives. They need to know what your reality is like.” Although allowing others to see what life with a special needs child is really like may be uncomfortable, he assures the benefits are worth the efforts. Ultimately, others can gain understanding as well as love and respect for people with special needs by interacting with families who are raising special needs children.

Perhaps one of the most powerful chapters of the book, Chapter 8, “Emotional Land Mines,” candidly describes the difficulties special needs parents must consciously avoid. Specifically, he warns against envying other people’s lives and advises special needs parents to stop comparing their lives to those of others. Additionally, he describes the dangers of fear, self-pity that can lead to despair, futile attempts to assign blame for the child’s disability, and the sense of being cheated. Instead, he suggests, “…the power over every circumstance depends upon my choice of perspective.” Similarly, he addresses the bitterness and grief associated with missed milestones, beautifully noting the importance of a positive perspective: “Joy can be found in the simple successes, and contentment in the seemingly insignificant moments.” Furthermore, in dealing with the death of dreams that parents of special needs children face, he admonishes abandoning our expectations because “God has plans and dreams for our children, too.”

Yet another key point Jeff Davidson raises is the importance of teaching our special needs children how to overcome fear. He stresses that parents must reassure their children that they can confidently trust God as a source of wisdom, protection, and provision. As an additional reassurance to parents, he reminds us, “God will always be there for your children, even if you can’t be.”

Sadly, Jeff Davidson passed away unexpectedly and went to be with the Lord in May 2017. In the preface of Common Man, Extraordinary Call, his wife, Becky, explains Jeff’s desire to help special needs families, especially fathers of children with special needs. Moreover, she notes that writing and publishing this book fulfills his dream “to speak directly to the men he knew were so in need of hope.” Indeed, Jeff Davidson’s words of faith and love will continue to inspire others while sharing the hope he had found in the Lord.

“The master said, ‘Well done, my good and faithful servant. You have been faithful in handling this small amount, so now I will give you many more responsibilities. Let’s celebrate together.’” Matthew 25:23

Book Review: Aching Joy

What do we do when life doesn’t turn out the way we expected, planned, or hoped? As Christians, how do we follow the Apostle Paul’s advice to “rejoice in hope, be patient in tribulation, and be constant in prayer” when our prayers seem to go unanswered? Writer, pastor, and autism dad Jason Hague skillfully addresses these questions in his recently released book, Aching Joy. [The author and Tyndall House Publishers, Inc. provided me with an advance reader copy; the book is now available through Amazon and Barnes and Noble.]

After his son Jack was diagnosed with severe autism, Jason Hague thought he had two options: to live with constant sorrow or to lower his expectations of what the future may hold. With neither choice offering a satisfying life, he instead embraces the path of “aching joy,” where “treasures hidden in the darkness” can be found.

For those who are in despair and frustrated with God, the author offers reassurance: it’s okay to be angry with God. Citing Biblical examples of men of faith who felt abandoned by God—David, Job, Jeremiah, and even Jesus—the author advocates being honest with God about our feelings. In fact, he notes, “Honesty with God is the beginning of healing.” Later, he goes on to explain that as children of God, we are allowed to admit hurt, feel fear, confront God, cry, and accept a situation that is less than ideal. However, he also cautions, “But as a child of God and a follower of Jesus, you are forbidden one thing: You are not allowed to give up hope.”

In a conscious effort to seek joy, Jason Hague began focusing upon developing his relationship with his son Jack and trying to understand his behaviors, such as flapping his arms. He tells a humorous anecdote regarding Jack’s “living-room shrine to Bush’s Baked Beans,” a pyramid of various types of cans Jack had carefully constructed and selected as a reward at the grocery store. What made this unusual interest more curious, the author explains, “He never opened any of those cans. He doesn’t even like beans.” Even though his family did not know why Jack thought these cans were so fascinating, they found his interest amusing and tried to figure out their appeal.

Since progress in autism is often slow, waiting for major breakthroughs can prove frustrating and tiring. Instead, the author suggests taking a break from waiting for a miracle and seeking “smaller graces day by day.” He explains, “God works in big ways and small ways. We must learn to see and receive his subtler miracles—his daily blessings—because that is where he does most of his best work.” Moreover, the author notes that seeking these smaller graces offers rewards: “When we actively look for his [God’s] hand in our circumstances, a funny thing happens. We start to see it.”

Along with trying to understand his son’s behaviors, help him learn to communicate, and develop a relationship with him, Jason Hague candidly describes one of the most difficult aspects of parenting a child with autism—dealing with meltdowns. Explaining how something seemingly small would upset his son profoundly, even to the point of Jack punching himself and banging his head against a wall, Jason Hague earnestly shares how helpless he felt during this “sheer, panicked agony.” He notes, “If we knew what was causing the meltdowns, we could have dealt with them. But he couldn’t tell us.”

Not knowing what specifically triggered the meltdowns, Jack’s parents desperately tried to comfort their son, holding his arms for safety while reassuring him of their love and reminding him that he was not alone. From that experience, the author draws the parallel of God as the father who promises in Scriptures to be with us always to give comfort and strength. As Jason Hague wisely notes, “‘I am with you’ means we never have to walk alone. That is reason enough for joy.”

Another aspect of life with autism that can cause grief, the author explains, is the tendency to compare our lives with others. Seeing typical family photos on social media or hearing about other children’s accomplishments can cause us to feel resentment and envy. Instead, the author urges us to celebrate others’ achievements while waiting for our prayers to be answered because they are evidence of “the goodness of God in the land of the living.” Moreover, he emphasizes the value of testimonies: “The stories of hope, big or small, from our neighbors or from our own histories, are evidence of the hand of God. Without them, we might despair.”

Nonetheless, human nature tends to look for fairness in life, and we may lament that it’s not fair for our children to suffer from autism. However, Jason Hague points out that we also need to look for the gifts our children have been given, recognizing that they may have been compensated in special ways. Specifically, he describes his son’s kindness, patience, and willingness to forgive others. Additionally, the author notes, “Despite the paralyzing effects of his condition, he finds more delight in the simple things of this world than anyone I have ever met.” Indeed, Jack’s ability to find joy in small things offers a testimony that out of suffering can come unabashed delight others can share.

In Aching Joy, Jason Hague openly shares his thoughts and feelings about the frustrations and joys in raising a child with autism. After struggling with uncertainty, he offers the wisdom he has gained from his experiences so that others may know that they, too, are not alone as they wait on the Lord. Moreover, this heartfelt memoir and testimony of faith reminds readers to seek God’s comfort: “Courage and healing are in his hands, and he waits for you to call.”

“The Lord is my strength and shield. I trust Him with all my heart. He helps me, and my heart is filled with joy. I burst out in songs of thanksgiving.” Psalm 28:7

Book Review: Look Into My Eyes

 

A few weeks ago, British author Dan Jones contacted me and asked if I’d be interested in reviewing the recently released second edition of his book Look Into My Eyes. In his email, he explained that he had written an autobiography last year describing growing up with Asperger’s syndrome. In the second edition, he decided to include helpful tips based upon his experiences as well as a chapter written by his wife explaining what it’s like to be married to someone with Asperger’s. Since I am fascinated to learn more about the perspective of those on the autism spectrum, I was pleased to accept Dan’s offer to share his book with me and to share my impressions of his writing.

Now in his late 30’s, Dan Jones was not diagnosed with Asperger’s until he was a young adult. After being diagnosed, he has worked with children of all ages on the autism spectrum and their families. Because of his experience with having Asperger’s and his ability to articulate his experiences, he is able to help children with autism and their families so that they can better understand traits commonly found in autism. He explains that the purpose of writing his book is to give hope to parents of children with Asperger’s syndrome and to people with Asperger’s syndrome. Moreover, he finds that writing helps him understand himself better. For him, writing is ideal because he can learn new things, share knowledge, and spend time alone––all of which are important to him.

While the book is primarily organized chronologically, going from his early childhood to adulthood, at times he repeats ideas and seems to ramble from one idea to another. He himself recognizes this quality, noting that his mind works this way. Consequently, his writing allows the reader to see how the mind works in Asperger’s syndrome. For the neuro-typical reader, his writing has a conversational feel that often flows in a stream of consciousness, and the movement from one idea to another is quite interesting. While he does repeat certain concepts throughout the book, he ties these ideas to various stages in his life and explains their significance clearly. Having lived with a child on the autism spectrum, I found these repeated references familiar and understood Dan’s need to make points evident through repetition. Furthermore, I was amazed by how detailed his descriptions are in relating incidents from his childhood, making them quite vivid for the reader.

Throughout the book, Dan describes the difficulties of dealing with sensory overload and social skills, which are common obstacles in autism. For example, he clearly explains the overwhelming sensory issues caused by the irritation of clothes, “busy noises,” “uncomfortably bright” sights, and “so much to try to focus on and keep track of.” As a child, he preferred adults to peers, who bullied him. He notes that he gravitates toward those who share interests with him, but he finds making friends difficult. He states, “I have never been good at making and keeping friends because I have no interest in making and keeping friends.” Moreover, he describes that as a child, “I was happy to sit alone in a corner somewhere; I didn’t feel a need to seek out the company of others.” As a parent, I have wondered whether Alex feels lonely not having peer friends, but if he shares Dan’s perspective, he may not care about having friends and may prefer his own company anyway.

In reading Dan’s description of his childhood, I found many similarities between him and Alex. For example, he describes himself as mostly calm and quiet, but he would get upset when plans were changed; I would describe Alex in the same way. Also, like Alex, he didn’t care whether he won or lost games; he simply wanted to do his best and stick to the rules. In addition, Dan describes enjoying one of Alex’s favorite things to do: imitating sounds and voices. Like Alex, he explains that he didn’t realize imitating people can be offensive, and he must work at not copying how people speak. Another similarity they share is a love for learning as well as learning to read at an early age and preferring nonfiction to fiction. I especially appreciated Dan’s explanation of his preference for nonfiction. He explains that he doesn’t see the point of reading something that is not real. Yet another likeness is that Dan describes himself as a good eater, which Alex is, too. However, I found Dan’s reasoning for being a good eater surprising. He explains that eating gives him something to do when others are around, and he doesn’t have to interact with them. In contrast, I think that Alex’s love of eating is not just a way to avoid social interaction; he seems to enjoy the act of devouring food, as well.

A major focus of the book is hypnosis, one of Dan’s main interests and the inspiration for the title of the book. When he was thirteen, he saw a television show about hypnosis and began reading books on the topic. He states, “I thought hypnosis might be the ultimate way of controlling the world around me so that people left me alone when I wanted to be left alone, and so that I didn’t have to do things I didn’t want to do.” Although he discovered that hypnosis didn’t give him that control, he found that it helped develop his social skills. He explains that hypnosis requires observation, copying other people's behavior, and communication skills, all of which improved his rapport with others. In addition, he was able to develop eye contact, which is often difficult for people with autism, learning to look through and past people when he could not look directly at them.

In this second edition of the book, he has included a chapter written by his wife, Abbie, whom he credits with helping him make positive changes, by encouraging him to be more emotional and to socialize with others. She describes dealing with his bluntness and his obsessions, but notes that they have built a strong relationship. This second edition also offers comprehensive tips and strategies for people with Asperger’s as well as their families, friends, and teachers. He emphasizes the need for developing social skills and using relaxation techniques and offers practical tips for coping with daily life. Moreover, he explains that people with Asperger’s need routines, structure, consistency, and support. In addition, he encourages people with Asperger’s to communicate their needs, such as asking for help.

Dan Jones’ second edition of Look Into My Eyes not only provides practical advice for people with Asperger’s syndrome, but also allows others a glimpse into the amazing mind of someone on the autism spectrum. While the reader may be boggled at times by the vivid imagery and details Dan Jones recollects from his life, one sees how brilliant, indeed, that mind truly is. Moreover, one can’t help but admire and appreciate the candor the author willingly provides in sharing his experiences in hopes of helping others. As we look into Dan’s eyes, we hope that we might see more clearly what is behind the eyes of those children on the autism spectrum who bless our lives with their unique perspective.

“The Lord replied, ‘Look around at the nations, look and be amazed! For I am doing something in your own day, something you wouldn’t believe even if someone told you about it.” Habakkuk 1:5

Book Review 2

Although nearly all of the books I have read about autism are nonfiction, occasionally I find some interesting fiction that features characters with autism. A few weeks ago, as I was browsing through the bargain books at Barnes and Noble, I ran across Up High in the Trees by Kiara Brinkman, a novel whose main character, Sebby Lane, has autism. Sebby, an eight-year-old boy, also narrates the story, which makes the book especially intriguing because he shares his thought processes that often resemble free association. For example, he muses on his teacher’s name: “Ms. Lambert. Lamb like a soft, white lamb and Bert, like on Sesame Street. It’s a funny name to think about.” Like many children with autism, Sebby notices sensory details in depth: “The desk smells like scratchy blue cleaning powder.” In addition, he has difficulty interacting with peers; his only friend is a girl named Katya who recently came from Russia and knows limited English. Perhaps what is most endearing and enlightening about Sebby is how he reveals his thoughts and feelings regarding his dysfunctional family in letters to his teacher, Ms. Lambert. For example, he writes to her, “Mother is not here. She’s a picture in my head. She’s laughing with her eyes closed.” In another letter he tells Ms. Lambert, “I do like you and I like how your black and white chapstick smells.” Sebby seems to sense in his teacher a stability that his family lacks due to tragedy, and he reaches out to her for reassurance.

In a similar book I recently read, Mockingbird, author Kathryn Erskine’s main character has Asperger’s syndrome. My friend K.C. recommended this young adult novel, knowing that I would find the perspective of the narrator, fifth grader Caitlin, interesting. Like Sebby, Caitlin has difficulty making friends with her peers, but later in the book, she befriends a first grade boy named Michael, whom she feels a need to protect. Despite working with a school counselor to improve her social skills, Caitlin struggles with interpersonal communication. Throughout the book, she constantly reminds herself of the social lessons she has been taught, such as, “Look At The Person” and “Good remembering Your Manners.” Another issue she shares with Sebby is her sensory defensiveness, describing her aversion to bright lights, itchy clothes, and noise. Recess time is especially difficult for her because of the noisy chaos and the expectation for her to interact with other children, who reject her because of her unique behavior. Both novels realistically portray how typical children often respond to peers with autism; perhaps tolerance of special needs children should be emphasized more, especially when these children are frequently mainstreamed in regular education classes. Despite the obstacles both Sebby and Caitlin face, they each possess a strong spirit that allows them to deal with the problems they face, making them admirable, even heroic characters.

While I enjoyed both Up High in the Trees and Mockingbird, I found the authors’ choosing to place both Sebby and Caitlin in tragic circumstances unnecessary. As if dealing with autism and peer rejection were not difficult enough, both characters face tragic losses of their beloved family members who provide strong emotional support. Sebby’s devoted and understanding mother is killed by a hit-and-run driver while out jogging, and Caitlin’s protective older brother is killed in a school shooting incident. In addition, Caitlin’s mother has also died, leaving her with only a grief-stricken father who can barely function, let alone meet her special needs. Similarly, Sebby’s father struggles with his own grief to the point he can no longer care for himself or his children. Fortunately, Sebby’s older brother and sister help care for him, but they, too, deal with grief and cannot completely understand Sebby’s autism. Children with autism have enough interesting dimensions to their personalities that these characters should not need additional heartbreaking obstacles to face. Ironically, Sebby and Caitlin, despite their difficulties with social interaction, become the most sympathetic characters as they work through their own grief, worry about others, and attempt to comfort family members who continue to grieve. Perhaps this approach is what the authors intended to show--that children with autism can surprise people with their ability not only to feel emotions more deeply than might be expected, but also to express care and concern as they step outside themselves to help others. Nonetheless, I appreciate the effort both Kiara Brinkman and Kathryn Erskine make in their writing to show how the mind of a child with autism may work and to demonstrate how lovable, admirable, and amazingly resilient these children really are.

“And anyone who welcomes a little child like this on my behalf is welcoming me.” Matthew 18:5

Book Review

In an earlier blog entry “Recommended Reading,” I mentioned that some of my favorite books about autism are memoirs written by parents describing how autism has impacted their children and their family lives. Recently, I read a memoir published last summer entitled Dancing with Max: A Mother and Son Who Broke Free written by Emily Colson, who describes her life as a single parent raising a son with autism. Even though each child with autism is unique, I always find the similarities between Alex and other children with autism intriguing, and I enjoyed reading about some of the interests that Max and Alex share. In the book, Emily describes her son filling a toy shopping cart with items around the house, pretending that he is playing his favorite game show, Supermarket Sweep. Alex also loved that show, and we specifically bought him a toy grocery cart and plastic toy food so that he could play along with the show as he watched it every day. Another interest that Alex and Max share is their fascination with commercial refrigerators in stores. In the book, she writes that Max asks to “check out the refrigerators” when they go shopping, which sounds like something Alex would say, and I’ve often caught him tilting his head at odd angles, looking for the temperature settings in the refrigerators when we go grocery shopping. A similarity that Max’s mother and I share is our desire to make certain our sons are well-dressed so that they are appealing to others. In the book, she explains going through Max’s preschool clothes to give away to charity, noting, “I held the pint-sized khakis he wore on his first days of school, the beautiful sweaters I dressed him in after his diagnosis. These were clothes that whispered, ‘This is someone’s child. Take good care of him. He is cherished and deeply loved.’” Her explanation moved me to tears because I, too, wanted people to know that Alex was adored as I dressed him in attractive sweaters, nice pants, and penny loafers to go to special education preschool. I thought perhaps people would be kinder and more patient with him if he were well-dressed and immaculately groomed with every hair in place. We took great pride in Alex, and I wanted his appearance to reflect that pride.

Another issue Emily Colson describes skillfully in her memoir is how other people react to Max’s behaviors related to autism. Frantically struggling to make certain that she gets Max the help he needs, Emily battles with the school to obtain appropriate services and placement. When Max was six years old, she met with the classroom supervisor, who is neither sympathetic nor helpful. She describes this meeting as follows: “I watched as the supervisor rolled his eyes and spoke as if he’d never seen a child as unfortunately disabled as my son. And then he smirked as if it were pointless to help Max, a waste of time and resources.” Whenever I hear stories like that, I am thankful that we were able to home school Alex and not have to deal with such uncaring people. In another heartbreaking story, she relates an incident in which she and Max are watching young boys leaping off a bridge into water. Noticing that one handsome, well-dressed boy about twelve years old keeps looking over at them, she wonders if Max might have been like him, had it not been for autism. Suddenly, the other boy begins screaming at his friends, not caring that Max can hear his insults, “It’s the retard! I told you guys I was right. It is the retard.” Again, I am grateful that we have been able to shelter Alex from the cruelty and bullying of adolescent peers who would take advantage of his weakness. She, like me, realizes that our sons are actually superior to these “normal” teenagers because Max and Alex would never say anything deliberately mean to make someone else feel bad. Moreover, our boys are excellent for determining people’s true character by separating the kind from the unkind. Later in the book, she states, “I’ve been fascinated by the way strangers react to Max. He brings out the best and worst in humanity, from the rudest of remarks to the most genuine act of selflessness. No one remains neutral.” From my experience, I’ve also found this to be true, and fortunately, most of the people we’ve encountered have been quite understanding of Alex’s differences, and he seems to have a good sense of those who care about him and warms up to them more quickly.

One of the strongest themes in Dancing with Max is the role that faith plays in their lives, which has been crucial to our life with autism, as well. After Max has regularly watched television broadcasts of a church service, she makes arrangements for them to attend that church in person. The experience is delightful to Max, who happily recognizes the familiar aspects of the service, and the people of the church are warm and welcoming to both of them. During the service, she notices a woman keeps looking at Max, and she wonders what the woman is thinking about Max’s somewhat unusual behavior. After the service, the woman approaches them, introduces herself, and explains why she was watching Max, saying, “I came to church today…facing a problem. A huge problem. But then I saw your son’s joy and your joy for him. It changed everything. It changed me. Max is a messenger for Jesus.” Of course, Emily is touched by the woman’s kindness and by the positive impact Max has had upon her through his uninhibited expression of joy. While the stereotype of autism is that these children are often emotionally flat, those who recognize their capacity for emotions can enjoy watching their happiness through laughter and smiles that are natural and never self-conscious. Throughout all the various trials and difficulties, Emily maintains a hold on her faith and proclaims, “God’s fingerprints are all over our lives.” I completely agree because I, too, have seen the hand of God in our lives with Alex, and I know that through the difficulties He has made us stronger and our faith deeper.

“You have turned my mourning into joyful dancing. You have taken away my clothes of mourning and clothed me with joy, that I might sing praises to You and not be silent. O Lord my God, I will give You thanks forever!” Psalm 30:11-12

Recommended Reading

Since Alex was diagnosed with autism nearly fifteen years ago, I have read hundreds of articles and dozens of books about autism, trying to understand how this condition affects him and how we can help him overcome the challenges he faces. In addition, I have bought many books on autism for reference, and my family room bookshelves are filled with medical books, psychological texts, and parent memoirs, all focusing upon how autism impacts daily life. One of the blessings of having been an English major as an undergraduate and graduate student is that I learned to read very quickly out of necessity. Moreover, I had excellent teachers who developed critical thinking, research, and communication skills, which helped me learn to assimilate what I’ve read into what I already know to give it meaning and context. While I don’t have Alex’s photographic memory, I can remember the gist of what I’ve read. Like Alex, I can quickly find information I need, whether by using the index of a book or a Google search on the Internet. Just as his research skills have enabled him to learn more about pi, meteorology, and astronomy, mine have led me to interesting discoveries about autism that have made our lives better. Of the many excellent books I’ve read, six stand out as especially important and useful. I often recommend these titles to other parents of children with autism, and I pull my own copies of these books from the bookshelf frequently for reference.

Recently, a friend asked me about how to help her child with sensory integration disorders, and I immediately recommended The Out-of-Sync Child: Recognizing and Coping with Sensory Integration Dysfunction by Carol Stock Kranowitz, a teacher who worked with children with sensory issues for many years. This book not only clearly explains why some children react as they do to sensory issues, but also offers many helpful and practical ideas and suggestions about how to help children deal with these problems, which often affect children with autism. Another excellent book written by a professional who has worked with children with autism is Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies—The Groundbreaking Program for the 4-A Disorders by Kenneth Bock, M.D. and Cameron Stauth. Dr. Bock does a wonderful job of detailing the increased incidence of these childhood conditions, the possible links between them, and ways to manage them through nutrition and diet, supplements, detoxification, and medication. Since we have taken the biomedical approach to dealing with Alex’s autism, Dr. Bock’s book reinforced our commitment to making Alex healthier through the gluten-free and casein-free diet, nutritional supplements, chelation of heavy metal toxins, anti-fungals, and Prozac. Dr. Bock’s book is not only thorough in its explanation of these childhood conditions and the ways to treat them, but the writing is also very readable and interesting. Of all the medical books I have, Biological Treatments for Autism and PDD by William Shaw, Ph.D. is the most dog-eared and highlighted text. Moreover, I have probably read this book more times than any other autism book I own because it offers a wealth of information about the medical issues related to autism. Dr. Shaw, a biochemist who founded the Great Plains Laboratory, has extensively researched autism and the aberrant lab test results children with autism often display. (Once when I called the Great Plains Laboratory to ask a question about Alex’s results, I got to speak directly with Dr. Shaw. I probably sounded like a groupie as I enthusiastically told him I’d read his book many times.) After running various hair, stool, urine, and blood tests on Alex through the years, we discovered that he, too, showed unusual results that needed to be addressed to improve his health, which ultimately improved his behavior, as well. Like Dr. Bock, Dr. Shaw takes a biomedical approach to autism, explaining the benefits of diet, chelation, supplements and medication. While Dr. Shaw’s writing style is not as easy to read as Dr. Bock’s because of the technical nature of his topics, his book is worth the effort, for all of the information he presents offers hope and healing for children on the autism spectrum.

While the books written by professionals have been helpful, I especially like books written by parents of children with autism. Karyn Seroussi, the mother of a child with autism, wrote one of my favorites, Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother’s Story of Research and Recovery. Not only does she describe her experiences parenting a child with autism, but she clearly summarizes the biomedical research she discovered that helped her son improve. In addition, she shares helpful tips that she learned along the way. Every parent who has a child with autism should own a copy of this book for reference. Another book written by a parent that I highly recommend is Beth Kephart’s A Slant of Sun: One Child’s Courage, a beautifully written memoir about her son with an autism spectrum disorder. Throughout the book, she describes her experiences in such vivid detail that she allows the reader a true glimpse of what her life is like, and I identified with her as a mother, especially when she notes: “In these years as Jeremy’s mother, I have learned how to be wary—how to go out into crowds a perpetual two steps ahead so as to reconnoiter, assess the risks, and steer a sheltered path.” As I described in another blog entry, “Remembering the Roses,” much of my life involves clearing paths—literal and figurative—for Alex so that he doesn’t stumble along the way. While most memoirs about children with autism are written by mothers, I am especially fond of one written by a father. Running with Walker: A Memoir by Robert Hughes is a candid account of life with his son who has autism. Despite all the challenges Walker faces, his father maintains a sense of hope and finds humor in the unusual circumstances autism often presents. I believe that the best books are those that make us laugh and cry, and Running with Walker moved me to both tears and laughter through its honest look at life with autism. Having celebrated Thanksgiving this week, I am thankful to those professionals and parents who have shared their knowledge, experience, and lives through their writing so that others can understand and help those children we love with autism.

“Wise words come from the lips of people with understanding…” Proverbs 10:13