Comfort Objects

In their early years, many children develop a fond attachment to certain objects that bring them comfort. For me, a small pink blanket I draped over my toddler shoulders served as my security blanket, much like the Peanuts’ cartoon character Linus. My mother tells of how I stood by the washer and dryer waiting for that beloved pink blanket’s return during necessary laundry sessions. Most appealing about this blanket was the satin binding around the edges that I fingered as I sucked my thumb. In fact, I so associated the two calming sensory activities that when I decided to stop my thumb-sucking habit, I told my mom to throw my blanket away. Wisely, she simply hid my pink blanket in case I changed my mind, but my resolve proved strong, and I never resumed my old habit nor needed the blanket I had dragged around until I was five.

When Alex was little, he had a beloved blanket, as well, although his was too large to carry around. As a toddler, he slept under a quilt my grandfather had given me. Years earlier, Paw Paw had bought handmade quilts for each of his six grandchildren. Mine has squares depicting little boys carrying fishing poles. The most eye-catching elements are the various brightly colored fabric hats and boots the boys are wearing that are appliquéd on the quilt. Alex was drawn to this design, and he called the quilt “the boys with socks.” Every night as he happily snuggled under his cozy quilt, he seemed content that “the boys with socks” would keep him company all night long.

Aside from the security blanket, Alex has had other objects that he finds comforting. However, most of them have been electronic items, such as graphing calculators, spelling correctors, and handheld games. If he misplaced these precious possessions, he became upset and even frantic until we found them. Because these things were so important to him, we learned to keep batteries on hand at all times to ensure they never lost power. In addition, we even bought duplicates of some of these items so that he wouldn’t melt down when they temporarily disappeared or permanently broke. Apparently, his attachment to certain objects is rather common in the autism community.

In a recent article, “Some autistic people find comfort in specific objects. What happens when they’re not available anymore?” published on October 4, 2019, in Vox, author Sarah Kurchak explains why people with autism value comfort items. [To read this article, please click here.] She notes that autistic people like herself dislike change and prefer stability, often found in certain objects. For her, a specific type of iPod offers her comfort because the songs programmed on her playlist drown out noise, and she finds the texture of the click wheel soothing. Since this device is no longer manufactured, she explains that she has been searching eBay online for a specific model identical to the one she owns that needs to be replaced. As she states, “We tend to use the same items over and over again until they fall apart, or we lose them.”

When children with autism lose precious comfort objects or these items break or wear out over time, parents often turn to the Internet to find exact duplicates. However, some of these products may no longer be available, which makes this desperate search more complicated. A few years ago, a father from England began searching for a specific drinking cup, the only one his son with autism would use.  In the article “Little Blue Cup: Dad Who Searched For Tommee Tippee Cup For Son With Autism Starts Global Kindness Project,” published November 22, 2017, in Huffington Post, Amy Packham explains how Marc Carter started an online network to find specific items for people with special needs. [To read this article, please click here.]

After he searched for the discontinued cups his son, Ben, needed, the company that had previously made them sent him five hundred exact duplicates. Recognizing that other parents of children with autism may have similar needs, Ben’s father established Little Blue Cup, a Facebook page for parents seeking specific hard-to-find objects. Explaining the purpose of this online networking project, he states, “If you care for someone with disabilities or special needs and they need a cup, bottle, or anything else, something small that keeps them happy, healthy, and from having the most challenging times, please let me know and we will search the Internet together.”

Looking over the Little Blue Cup Facebook pages (including a page specifically for the United States and Canada), one sees requests for a variety of objects held dear by people with special needs: blankets, clothing, stuffed animals, and other toys. Most of these items are rare or no longer manufactured, making the search to replace them more difficult. While the requests and stories behind them are touching, the responses to the families’ needs are also heartwarming as people try to fulfill these requests with similar or exact duplicates. Clearly, Marc Carter’s experience with his own son’s needs allowed him not only to display his empathy by setting up the Little Blue Cup Project but also to provide a way for people to interact compassionately by requesting and fulfilling special needs.

Although comfort items are typically associated with children, the need for these special objects often continues into adulthood for people with autism. As one adult with autism remarks in the Vox article, “As you get into adulthood, you’re kind of told that you’re not supposed to have comfort items…It’s not an exclusively autistic thing, but it gets drilled into us that we have to outgrow certain childish tendencies, like having comfort stuffed animals or comfort items that you take with you all the time. If autism is seen as a developmental disorder, then autistic people are seen as people who have to outgrow childhood.” Fortunately, with the establishment of the Little Blue Cup Project and the support from people willing to share comfort items, perhaps those with autism can retain not only objects precious to them but also an innocent childlike existence where they can feel comfort in knowing people love and care about them and will strive to meet even the seemingly smallest of their needs.

“When doubts filled my mind, your comfort gave me renewed hope and cheer.” Psalm 94:19

The Autism CARES Act

Last Monday, on September 30, 2019, President Donald Trump signed the Autism CARES Act into law. As Natasha Anderson from Cleveland’s Fox 8 News reports in an online article titled, “President Trump signs ‘Autism CARES Act’ providing $1.8B in funding for programs,” this law offers 1.8 billion dollars over five years for autism programs. [To read this article, please click here.] Specifically, three government agencies––the Centers for Disease Control and Prevention, the National Institutes of Health, and the Health Resources and Services Administration––will use these funds toward autism research, education, early detection, and treatment.

According to an online article written by Michelle Diament titled, “Congress Considers Renewal of Autism Act,” and published online February 11, 2019, on Disability Scoop, the Autism CARES Act enables continued federal funding for autism. [To read this article, please click here.] Autism CARES is the acronym for Autism Collaboration, Accountability, Research, Education, and Support.

However, this is not the first federal government act passed to help people with autism and their families. According to the “Autism CARES Act Issue Brief” published on the Autism Society website, President George W. Bush signed the Combating Autism Act into law in 2006.  [To read this summary, please click here.] This law was designed to coordinate federal agencies in response to significant increases in the numbers of children diagnosed with autism. Since that law was signed in 2006, the rate of autism has substantially increased even more––approximately six hundred percent.

The recently signed Autism CARES Act replaces the original Autism CARES Act that was due to expire on September 30, 2019. The 2014 Autism CARES Act was a bipartisan bill both the Senate and the House of Representatives passed unanimously. Under the previous ACA, $260 million of government funds were allocated annually for autism research and services. Not only does the new version of the ACA provide significantly more funding, but the current law also addresses the needs of adults with autism, using the phrase, “across the lifespan.”

Another bipartisan effort, the Autism CARES Bill of 2019 was sponsored by Representatives Chris Smith, a Republican from New Jersey, and Mike Doyle, a Democrat from Pennsylvania. Similarly, in the Senate, the bill was introduced by Senator Bob Menendez, a Democrat from New Jersey, and Senator Mike Enzi, a Republican from Wyoming.

In a statement, Representative Smith noted, “The problem of ‘aging out’ of services is a real hurdle every parent or caretaker of a child with autism inevitably faces. But autism is a lifetime neurological disorder, and adults with autism continue to need their services.” Additionally, he stated that the Autism CARES Act will help provide support to “an estimated 50,000 persons with autism each year who ‘age out’ of critical assistance programs,” a crucial need since, “many individuals and communities are unprepared for this transition.”

The Autism CARES Act addresses three primary areas: research, data, and training. Federal funds support research into biological, genetic, and environmental aspects of autism as well as seeking potential biomarkers for autism. In addition, researchers seek the best methods for treatment and intervention in autism. Under the direction of federal agencies supported by the Autism CARES Act, data is collected to estimate the number of children with autism in various regions of the United States and to help identify risk factors for autism. Along with research and data collection, the Autism CARES Act supports training professionals to screen, diagnose, and treat people with autism, including addressing physical and behavioral issues. Moreover, the Autism CARES Act funds agencies that provide parents with support and information regarding access to services for their children with autism.

President Trump demonstrated his heartfelt concern for autism families as well as his enthusiastic support for the Autism CARES Bill, posting the following comments on Twitter: “Today I was proud to sign the Autism CARES Bill! We support research for Americans with Autism and their families. You are not forgotten, we are fighting for you!”

Certainly, the Autism CARES Act serves as an impressive example of how politicians can work together amicably for a noble cause. Hopefully, greater emphasis upon the needs of adults with autism as well as the increased funding will reap great rewards for the autism community. Perhaps valuable research can find a cause and a cure for autism, thereby eliminating a need for future Autism CARES Acts and answering the prayers of many families whose lives have been touched by autism.

“Rulers lead with my help, and nobles make righteous judgments.” Proverbs 8:16

"To Protect and Serve"

Last month, two Northwest Indiana police departments announced initiatives to aid people with autism and their families. While these programs seem rather simple, the potential benefits could be significant in emergency situations. Moreover, these agencies demonstrated their caring and commitment to some of the most vulnerable citizens in their communities, which is certainly impressive and commendable.

On August 28, 2019, the Starke County Sheriff’s Office Facebook page posted an offer of free bumper stickers to families affected by autism or Alzheimer’s disease or dementia. Sheriff Bill Dulan noted that these stickers could be posted on homes or vehicles to give first responders a “Heads Up” in an emergency situation “that your child or loved one may need extra assistance.” These bumper stickers bear the symbol of the Starke County Sheriff’s Department and contain the following messages: “Emergency Responder: An occupant may have autism or special needs. May not respond to verbal commands” and “Emergency Responder: An occupant may have Alzheimer’s or dementia. May not respond to verbal commands.”

By providing these bumper stickers at no cost to families with special needs, the Starke County Sheriff’s Office shows their concern for those who may not be able to communicate in an emergency situation. Additionally, this simple method of identification may assist first responders in providing appropriate care and support to special needs people. Furthermore, these stickers offer peace of mind to families dealing with autism, Alzheimer’s disease, and dementia, knowing that their loved ones can receive the special care they need in a crisis.

While the Starke County, Indiana Sheriff’s Office provides free bumper stickers to help identify people with autism, the East Chicago, Indiana police now offer free identification bracelets for people with autism. On August 1, 2019, The Times of Northwest Indiana newspaper published an article written by Paul Czapkowicz titled, “Forces partner to aid autism patients,” explaining a plan by the East Chicago Police Department to help identify people with autism. [To read this article, please click here.] Working with the North Township Trustee’s Office, the police created the Emergency Identity Program. The township trustee’s office provides forms for parents of children with autism who wish to participate in the program. In addition, the agencies are currently working with the local school system to offer the program to students who have autism.

Parents who enroll their children with autism in the Emergency Identity Program will be given a lime green bracelet for their children to wear on their wrists, ankles, or shoes. These bracelets easily identify the wearers as having autism so that police officers can help them cope better in emergency settings. Additionally, North Township Trustee Frank Mrvan showed compassion for people with autism, hoping that the bracelets would have a positive impact instead of “having a stigma to them.” Participation in this program is voluntary, and families who opt to enroll will receive the identification bracelets at no cost to them.

As well as serving as an easily visible cue to first responders that the bracelet wearer has autism, the bracelets are numbered so that police can look up the person’s name, address, and phone number if needed. In addition, the agencies are collaborating with the local 911 dispatch center so that police could be notified in advance if they were going to the home of someone with autism. Yet another benefit of this program could be helping to find lost children who have autism since many children with autism wander from home, school, or other safe places. These bracelets could help police find these children and return them safely home.

Spearheading this initiative is East Chicago police officer Sgt. Justin Orange, Sr., who is the father of a child with autism. He states, “The reason why this was kind of near and dear to us was because I have a son with autism and there’s also another officer on our department who also has a son that has autism.”

In addition to developing the program to identify people with autism by using these bracelets, the East Chicago Police Department has worked with the Autism Society of Indiana to train officers in how to interact with people with autism and how to calm people with autism who may be agitated in an emergency situation. As North Township Trustee Frank Mrvan wisely notes, “With autism, very often there are triggers such as flashing lights and noises that escalate people, and their escalation turns to fight-or-flight.” Along with training police officers, the city has offered seminars for families of children with autism to explain procedures if the police were called to their homes.

Further demonstrating their commitment to helping people with autism, the East Chicago Police are working with the Autism Society of Indiana to provide the department’s squad cars with de-escalation kits. These kits include items, such as stress balls, stuffed animals, and spinners, to help calm people with autism who are overwhelmed by sensory stimuli or upset in a crisis situation.

At the time this newspaper article was written, more than one hundred children and adults with autism had already registered for the East Chicago Emergency Identity Program. Even more encouraging is that nearby communities are developing similar plans to help people with autism. Specifically, in Lake County, Indiana, the town of Munster has initiated a comparable program, and the city of Hammond has recently started their own program. In addition, North Township Trustee Frank Mrvan anticipates that the Lake County towns of Highland and Whiting will also develop similar programs to assist people with autism in the near future.

With the increase in the prevalence of autism, communities must develop plans to help people with autism and their families in emergency circumstances. Being able to identify people who have autism with stickers or bracelets could prove to be a simple yet effective way to assist with this issue. Moreover, training first responders how to interact with and to calm people with special needs could prove vitally important in emergencies. The Starke County Sheriff’s Office and the East Chicago Police Department clearly recognize the needs of people with autism, as evidenced by their recent initiatives designed to help this special needs population. Certainly, they embody the police motto, “To protect and serve,” through their dedicated efforts to help people with autism. Hopefully, more community agencies will follow their lead and develop programs to aid people with autism, especially in emergency situations when they need help the most.

“…help those in trouble. Then your light will shine out from the darkness, and the darkness around you will be as bright as noon.” Isaiah 58:10

Most Annoying Award

Last week, an article from my local newspaper, The Times of Northwest Indiana, received national attention: “Teacher mocks autistic student with ‘most annoying’ award, parent complains.” In this news report and two follow-up articles, education reporter Carley Lanich describes how a fifth grade student with nonverbal autism received a trophy inscribed with “Bailey Preparatory Academy 2018-2019 Most Annoying Male,” and she details the school district’s response to the teachers’ involvement in this unprofessional and unkind act. [To read “Teacher says she’s a scapegoat after student with autism given ‘Most Annoying’ trophy” and to access links to two previous articles on this story, please click here.]

According to The Times, on May 23, 2019, fifth graders from Bailey Preparatory Academy, a public school in Gary, Indiana, celebrated the end of the school year with a luncheon at a restaurant for teachers, students, and students’ families. This event included a “Students’ Choice Awards” ceremony where students chosen by their peers were awarded trophies for various categories. Prior to the awards ceremony, students had been given ballots prepared by two fifth grade teachers with categories and explanations of each award, such as, “Most Positive (always encouraging or motivating others).” Students were to write in the name of a female and male student for each category, and these ballots were returned to the two fifth grade teachers overseeing this event.

When the so-called award for “Most Annoying Male” trophy was given to a boy with autism, his father, Rick Castejon, was shocked but did not want to cause a scene. He explained that his son didn’t understand the meaning of the trophy and was not upset, but as a parent he questioned the school’s judgment in giving an award for this category. Moreover, he noted that another boy, who is not a special education student, received this same designation and was teased by other students when he was called forward to receive his trophy. The next day, the father contacted the school district with his understandable concerns.

Reportedly, the teachers at the awards ceremony told the parents that all of the fifth grade students had voted for the class awards, and the teachers were just there to hand out the trophies. Apparently, they were attempting to protect themselves against any fallout and placing the blame upon the students. However, the father of the boy with autism directly criticized his son’s special education teacher, who handed him the trophy, stating: “You should have protected my son no matter what. Your job should’ve been to say, ‘We’re not going to give this one out.’”

In addition to the traditional positive awards, such as “Most Scholarly,” the teachers included the grammatically incorrect “Most Funniest” and “Most Friendliest” categories on the ballot. Besides the negative “Most Annoying,” the teachers also offered “Most Sleepiest” as a grammatically incorrect and thoughtless choice for those “usually caught trying to take a nap.” Again, these teachers used poor judgment when not considering their students’ difficult home situations that may impair their sleep and make them overly tired at school.

After the initial article about the boy with autism receiving the “Most Annoying” title, this news story received national attention and public outcry for the cruel treatment of this special needs child. Readers insisted that the teachers involved at least be fired and even prosecuted for their actions. The Gary Community School Corporation, already suffering from a reputation as one of the worst school districts in the state of Indiana, immediately attempted damage control. A school spokesperson issued the following statement: “The team is working to ensure that an occurrence of this nature will never happen again.”

Initiating an internal investigation by an education attorney, the school district placed the school principal on administrative leave pending further investigation. Moreover, the special education teacher and the two fifth grade teachers responsible for the ballot and awards have been notified that their teachers’ contracts have been cancelled based upon their “inappropriate behavior” and “poor professional judgment.” In a letter from the principal, she notes the failure of these teachers to be “an acceptable role model” and to treat their students with “dignity and respect” by giving the “inappropriate awards.” The teachers have the right to appeal the decision regarding their dismissal from the district.

Although the principal and two fifth grade teachers have not issued statements to the press, the special education teacher is loudly complaining about her fate. Alexis Anderson-Harper, who has been employed with the Gary schools for fifteen years, claims that she is being unfairly targeted. She states, “I feel like my livelihood is being taken away from me.” In a rather odd analogy, she continues, “You’re playing Russian roulette with my life.”

According to Ms. Anderson-Harper, the fifth grade teachers who organized the awards ceremony are to blame because they created the students’ ballot for the awards. She simply explained the categories to her students and even decided to omit the “Most Athletic” award since none of her students participated in school sports. However, she failed to delete the “Most Annoying” category. She claims that she didn’t realize her student would receive that designation until after his name was read and she handed him the trophy at the ceremony. In her attempt to save her job and her honor, she apparently blames her colleagues and the students, never apologizing for her part in the cruelty to her student, nor expressing regret for not doing something to prevent upsetting his parents.

As a result of the national attention this news story has generated, the family of the boy with autism has received letters of support from around the country and offers of replacement trophies and scholarship funds. However, the boy’s father states that they are only accepting the kind notes they have received and are looking into having donations sent to an autism organization. He explains that he did not want to cause trouble or get teachers fired, but he just wanted someone to be held responsible.

In a society where too many trophies are handed out just for participation to prevent hurt feelings and to promote self-esteem, this story of “awarding” a trophy out of thoughtlessness and perhaps even spite raises righteous indignation. Teachers who demonstrate such poor judgment and lack of compassion should not be working with any children, let alone special needs children, and they deserve to be fired. Whether the student with autism understands the meaning behind the trophy or not, his parents do, and they certainly must be hurt by the actions of these teachers. Moreover, the regular education student who also received the “Most Annoying” designation does understand what it means and had to endure not only the negative label but also the taunting of his peers who voted for him to receive it. Hopefully, this incident will make more people, especially those who work with impressionable children and special needs students, think about how to treat people with compassion and understanding.

“You will heap burning coals of shame on their heads, and the Lord will reward you.” Proverbs 25:22

Connections Between the Brain and Heart in Autism

Recently, two interesting research summary articles published online at Spectrum indicate that children and adults with autism display characteristic differences in heart rates, suggesting the autonomic nervous systems of their brains also function differently. In “Nerves that control heart rate may contribute to autism,” published February 19, 2019, Nicholette Zeliadt describes contrasts between heart rate changes in typical children and those with autism. [To read this article, please click here.]

Referencing “Developmental trajectories of autonomic functioning in autism from birth to early childhood,” published March 2019, in Biological Psychology, this Spectrum article explains research done at Brown University in the United States. [To read this research article, please click here.] Under the direction of Stephen Sheinkopf, associate professor of psychiatry and human behavior, researchers studied 118 children from ages one month to six years by measuring their heart and breathing rates. Of this group, 12 had autism, and the other 106 did not have autism. They were assessed every 6-12 months.

Normally, a person’s heart rate increases when inhaling and decreases when exhaling, a condition known as respiratory sinus arrhythmia (RSA). The autonomic nervous system controls these slight changes. These changes in breathing and heart rate are also linked to regulating emotions and paying attention to social cues, which are often impaired in autism.

The researchers found that all of the children showed similarly decreasing heart rate, which occurs over time with normal development. However, the children with autism were slower than their typical peers to develop the normal fluctuation of heart rate that occurs with breathing. Moreover, this phenomenon was most obvious after 18 months of age when behavioral symptoms of autism often emerge. By the age of 6, children with autism catch up with their typical peers in this trait (RSA) and demonstrate similar fluctuation of heart rate with breathing.

After observing the differences in heart rates and breathing between typical children and those with autism, researchers concluded, “RSA is a marker of functional status in autism rather than a cause of social deficits.” They suggest that the impairment of the autonomic nervous system occurs when autistic behaviors appear. Moreover, they note that children with autism have issues with physiological regulation––such as breathing and heart rate––that develop over time. Because this research only involved children who were exposed to drugs before birth, the researchers plan to study other groups of children to see if heart rate and breathing differences occur more widely.

In another recent Spectrum article, published May 17, 2019, and titled “Nerves that control heart rate may be offbeat in autistic adults,” Jessica Wright describes similar research involving adults. [To read this article, please click here.] She summarizes an article, “Reduced heart rate variability in adults with autism spectrum disorder,” published in Autism Research on April 10, 2019. [To read this research, please click here.]

Under the direction of Adam Guastella, professor of child and youth mental health at the University of Sydney in Australia, researchers examined resting heartbeats of 110 adults aged 16-41. Half of the participants had autism, and the other half included typical adults. All of the people in the study had no known heart conditions, and none of them were taking heart medications.

Usually, people’s resting heartbeat varies, showing flexibility and readiness to respond to environmental changes. However, researchers discovered that in adults with autism, the resting heart rate rarely varied. Moreover, those with autism had a higher baseline heart rate than the typical people. The lack of change in heart rate suggests issues with the autonomic nervous system responsible for reacting to social stimuli as well as heart rate and breathing. Researchers note that these results may explain issues with social skills common in autism as well as heart problems that can lead to early death in people with autism.

Of the participants in the study who had autism, half of them were taking medications, specifically antidepressants and antipsychotics. However, there was no difference in the heart rates between the adults with autism taking medications and those with autism who were not taking medications. Nonetheless, researchers indicate the need for further study to examine the impact of medications upon those with autism.

While both of these research studies indicate connections between heart rates, the autonomic nervous system, and autism that begin in infancy and continue through adulthood, more research clearly needs to be done. For example, what triggers at age 18 months may be responsible for the emergence of autistic behaviors? What is the connection between impairment of the autonomic nervous system and the apparent need for antidepressant and antipsychotic medications commonly prescribed for autism? What can be done to regulate heart rates so that adults with autism do not die young from heart conditions? Certainly, gaining knowledge regarding autism proves helpful, but more research must be done before we can hope to find a cure for autism.

“Jesus replied, ‘Love the Lord your God with all your heart and with all your soul and with all your mind.’” Matthew 22:37

Recognizing Autism in Babies

According to research, some common traits of autism usually emerge in infants during the ages of 9-16 months. However, parents may not be familiar with these early signs, which can cause delays in having their children diagnosed with autism. Often, children are not diagnosed with autism until they are four or five years old, postponing early intervention that can help address issues associated with autism. This month, two notable organizations introduced helpful guides for parents of infants to help them identify concerning characteristics related to autism so that they may seek further assessment.

According to “Early signs of autism for infants and toddlers,” written by Joe Dziemianowicz and posted April 1, 2019, on the Today show website, a new online resource called Baby Navigator can help parents recognize common traits of autism. [To read this article, please click here.] Developed by the Florida State University College of Medicine’s Autism Institute, under the direction of Amy Wetherby, Ph.D. in communication disorders, this site is designed for parents.

As part of the Baby Navigator site, Autism Navigator offers a wealth of free resources for families, including photos, videos, and screening tools for babies 9-18 months. [To view this site, please click here.] The goal of this site is to help parents recognize the first signs of autism to assist in early detection and diagnosis. A primary resource of Autism Navigator is an online text illustrated with photographs, 16 Early Signs of Autism by 16 Months. This book not only defines common characteristics found in babies with autism but also contrasts these behaviors with those of typical infants. In addition, they note that if only one or two traits are exhibited, parents should not be concerned, but babies showing four of the traits should be screened for autism. Moreover, they recommend that those infants who display eight or more of the traits should be referred for an autism evaluation.

The 16 Early Signs of Autism by 16 Months include the following:

1. “Hard to get your baby to look at you”––They explain that typical babies gaze at their parents’ face and eyes, whereas babies with autism often do not look at faces.

2.  “Rarely shares enjoyment with you”––They note that typical babies smile and laugh, while babies with autism may rarely smile or show facial expressions and may have a flat affect, making it difficult to tell whether they are happy.

3.  “Rarely shares their interests with you”––They explain that babies with autism often do not use gestures, such as pointing, or sounds or words, as typical babies do.

4.  “Rarely responds to their name or other bids”––They describe how babies with autism may not come when they are called or may not engage in interactive behaviors, such as waving or looking where someone else is pointing.

5. “Limited use of gestures such as showing and pointing”––They indicate that babies with autism often do not point with their fingers.

6.  “Hard to look at you and use a gesture and a sound”––They explain that typical babies use a combination of behaviors to show their interests and wants. Babies with autism may not be able to do all three behaviors at the same time.

7.  “Little or no imitating other people or pretending”––They note that around a year old, babies copy others’ behavior, such as caring for a teddy bear or pretending to cook. However, infants with autism may not display these behaviors.

8.  “Uses your hand as a tool”––They describe how typical babies ages 9-16 months use a variety of gestures, such as reaching and waving. In contrast, those with autism have limited gestures and may use their parents’ hands as tools instead, such as using a parent’s hand to point instead of their own.

9.  “More interested in objects than people”––They explain that typical babies like to interact, whereas babies with autism may ignore other people, especially if they are already engaged with toys or objects.

10.  “Unusual ways of moving their fingers, hands, or body”––They note that babies with autism may stiffen and flare their fingers or display unusual posture.

11.  “Repeats unusual movements with objects”––They describe how children with autism may spin or line up objects.

12.  “Develops rituals and may get very upset over change”––They note that typical babies learn routines but can adapt easily to change. By contrast, babies with autism need routine and may be inflexible and upset about change.

13.  “Excessive interest in particular objects or activities”––They explain that infants with autism may be overly focused and difficult to shift their attention away.

14.  “Very focused on or attached to unusual objects”––They note that babies with autism are often drawn to utensils or gadgets.

15.  “Unusual reaction to sounds, sights, or textures”––They describe sensory issues found in autism, such as putting hands over ears in loud environments, squinting in bright light, and being bothered by clothing tags.

16.  “Strong interest in unusual sensory experiences”––They provide examples of behaviors observed in children with autism, including looking out of the sides of their eyes and rubbing objects that have texture.

This clearly written and well-organized book offers a valuable resource for parents of infants who may be concerned that their children are displaying characteristics of autism. Another excellent resource introduced this month may also provide helpful guidance for those parents of infants concerned about their children’s development. The National Autism Association recently published “Autism SOS” online as a simple guide to help parents recognize signs of autism at 12-18 months and 18-24 months. [To view this guide, please click here.] The letters SOS stand for Social Avoidance, Obsession and Repetition, and Speech Delays.

Specifically, social avoidance in autism includes the tendency to prefer objects to people, a lack of eye contact, and not responding to others’ facial expressions, such as smiles. In addition, social avoidance includes the following behaviors: not imitating parents, preferring to play alone, and not liking being touched.

Examples of obsession and repetition commonly seen in autism may involve children staring at their hands or objects, especially things that spin. Moreover, they may engage in repetitive movement, such as hand flapping or rocking. Also, they may exhibit a need for sameness and routine, and they may become upset by sensory issues, including loud noises and bothersome textures.

The third identifying aspect of autism, speech delays, is critical but not as specifically addressed by Autism Navigator. For many parents, speech delays are the impetus to have their children assessed for autism. “Autism SOS” explains that speech delays involve expressive language, such as the baby not attempting to communicate by pointing or reaching or by making sounds like “da-da” or “ba-ba.” In addition, the child may repeat words over and over with no real intent to communicate to others, and by two years old, the child may not be able to produce two-word phrases. Furthermore, children with autism may display speech delays by their lack of receptive language, not responding to their names nor understanding simple statements and questions directed to them.

While the rapidly increasing numbers of children diagnosed with autism are worrisome, the increase of helpful resources for parents is encouraging. Hopefully, the availability of useful guides, including Autism Navigator and “Autism SOS,” will encourage parents to seek professional help for their children who are struggling with autism so that they can overcome obstacles and develop skills needed to develop their full potential.

“After these signs take place, do what must be done, for God is with you.” I Samuel 10:7

On Target

Recognizing sensory and motor issues people with autism and other disabilities face, popular retailer Target has addressed these needs by recently offering special lines of clothing and home furnishings. Through their Cat & Jack clothing for children, Universal Thread clothing for adults, and Pillowfort home items, Target now offers products thoughtfully designed with their special needs customers in mind.

According to articles on Target’s corporate website, A Bullseye View, titled “Cat & Jack Includes Adaptive Apparel to Help Meet the Needs of Even More Kids” and “Design for All: Cat & Jack Add Select Sensory-Friendly Pieces for Kids,” Target began offering “sensory-friendly” clothing in 2017. [To read these online articles, please click here and here.] For example, this line of clothing has stamped labels instead of tags, flat seams, and no embellishments that may bother children with sensory sensitivity. In addition, leggings were designed with extra room in the hips to accommodate older children who wear diapers.

Target clothing design director Stacey Monsen knows firsthand the difficulties of dressing a child with autism: her young daughter has autism and was not potty trained by age seven. Working with a volunteer group of parents and organizations who could provide input, the Target team worked to solve some of the problems of clothing children with special needs. As Stacey Monsen states, “My goal is to keep being an advocate, for my daughter and for others.”

Not only are the Cat & Jack clothing sensory friendly, but they also come in a wide range of sizes: toddler sizes 2T-5T and bigger kids sizes extra small through extra extra large. Additionally, the clothes are quite reasonably priced from $4.50-$39.99, with most priced under twenty dollars, making sensory friendly clothing available to a wide range of customers.

Following up on the popularity of the Cat & Jack sensory-friendly clothing, Target introduced adaptive clothing in the fall of 2018. Using input from “real kids,” designers developed apparel to meet special needs. Specifically, this clothing line includes snap and zip closures on the sides and back along with abdominal access openings that are hidden. Other features include footless sleepwear, bodysuits sized for older children wearing diapers, and jackets with zip-off sleeves. Additionally, this clothing is made with “extra-soft, comfortable, and durable cotton knits.” All of these adaptive clothes were designed to make dressing easier for children with special needs and their parents.

According to a Disability Scoop online article written by Shaun Heasley and published on January 31, 2018, “Target Adding Clothing For Adults With Special Needs,” the retailer added a line of clothing to serve women with sensory and adaptive needs in February 2018. [To read this article, please click here.] The Universal Thread collection offers tops and jeans in a wide range of adult sizes reasonably priced from $5 to under $40. Like the Cat & Jack clothing line for children, the adult versions are “sensory-friendly” with stamped labels instead of tags, flat seams, and extra-soft material. The jeans have longer inseams, wider leg openings, high-rise backs, and no pockets to make getting dressed easier.

Building on the success of the clothing lines addressing special needs, Target has recently added sensory-friendly items to their Pillowfort home collection. According to an online article written by Mark Wilson on Fast Company published April 3, 2019, and titled “Target’s newest furniture is for kids with sensory sensitivity,” Target is now offering furniture items specifically designed for special needs children. [To read this article, please click here.] Just as with their Cat & Jack sensory-friendly and adaptive clothing, Target designers consulted with parents and children to gain input on this sensory-friendly furniture line.

Furthermore, Target’s website details the careful thought put into these special home items on their “Sensory Friendly Kids’ Home” page. [To access this page, please click here.] For example, the cocoon seat offers “cradled comfort” as well as a removable, washable “super-soft” cover with a water-resistant liner. The hideaway tent allows children a place to get away from sensory overload while providing a carrying case for easy transport. The crash pads, like the cocoon seats, have removable, washable covers with water-resistant linings, as well as durable fabric and foam. The weighted blankets, which many children with autism find soothing for sleep, have “super-soft removable, washable covers.” As with the special clothing lines, Target has kept these home items reasonably priced from $20-100, making them available to most families. As Target senior vice-president Julie Guggemos explains, “At Target, our purpose is to help all families discover the joy of everyday life.”

Certainly, Target should be commended for their concern for special needs customers and their willingness to seek input about how to make their lives easier and better. By offering a variety of reasonably priced clothing and furniture that address sensory and adaptive issues, Target can successfully meet the needs of a growing population. Indeed, through the Cat & Jack, Universal Thread, and Pillowfort collections, Target can help families, especially those with special needs, “discover the joy of everyday life.”

“And this same God who takes care of me will supply all your needs from His glorious riches, which have been given to us in Christ Jesus.” Philippians 4:19

Autism by Numbers

Last Monday, April 1^st, marked the beginning of this year’s Autism Awareness Month. One of the many things I have learned from Alex is the value of numbers and statistics, as well as qualifying figures as “approximately” or “exactly.” In honor of my adult son with autism, I will share some important data that demonstrate the need for autism awareness every month, not just every April.

The sources of my information are articles from the websites for the National Autism Association and The Autism Community in Action. [To read “Autism Fact Sheet,” please click here. To read “Autism & Safety Facts,” please click here. To read “Autism Statistics and Cost,” please click here.]

1.  According to current statistics from the Centers for Disease Control and Prevention, approximately 1 in 59 children in the United States has autism.

2.  The rate of autism is 4.5 times higher in boys than in girls: an estimated rate of 1 in 42 boys vs. 1 in 189 girls in the U.S.

3.  Approximately 40% of children who have autism do not speak.

4.  Estimates reveal more than 3 million people in the United States have autism.

5.  Since 1970, autism rates in the U.S. have increased significantly from 1 in 10,000 to 1 in 1,000 in 1995 to 1 in 250 in 2000 to the 2018 report of 1 in 59.

6.  Even though autism is the most rapidly increasing developmental disorder, only about 5% of government research funding is spent on autism.

7.  Autism is often––in as many as 85% of people with autism––accompanied by other conditions, such as anxiety, OCD, epilepsy, allergies, asthma, autoimmune disorders, and gastrointestinal disorders, as well as difficulties with eating, sleeping, and sensory issues.

8.  In 2008, researchers in Denmark discovered that people with autism have double the mortality risk than typical people, primarily due to drowning and accidents.

9.  Approximately half (48%) of children with autism try to wander away from safe environments.

10.  In children with autism aged 14 and younger, 91% of total deaths in the U.S. resulted from accidental drowning after wandering away from a safe place in 2009, 2010, and 2011.

11.  Of adults who have autism, 87% live with their parents.

12.  The United States currently spends about $268 billion for autism costs annually. This amount is projected to increase to $1 trillion per year by the year 2025.

Behind these facts and figures are real people and their families whose lives are impacted every day by autism. While awareness is important, action is needed to help children and adults who are struggling with autism. Because so many cannot speak for themselves, we must speak for them.  Those who wander need to be protected from danger, and underlying medical and psychiatric conditions need to be treated instead of simply being dismissed. Moreover, more research needs to be done to find the causes and cures for this lifelong disorder that is growing at epidemic levels at great personal and financial cost. Our society can and must do more to help these vulnerable and precious souls afflicted with autism and their families who love and care for them.

“Teach us to number our days, that we may gain a heart of wisdom.” Psalm 90:12

Protecting Babies from Autism

While the birth of a baby is certainly cause for celebration, as an autism mom, I find myself unsure of how much information I should share with new parents, hoping that their child will not struggle with autism, as mine has. Do I simply pray that their child will be blessed with health and spared from autism, or do I offer wisdom gained from our experience? Will they see my suggestions as helpful hints or nosy intrusions? If I remain silent about what I would have done differently, had I known when Alex was a baby, will I regret not being more assertive later? Can I spare another child from the difficulties my child has needlessly had to face? While autism still remains a mystery in many regards, research in recent years offers parents ways that may prevent their children from acquiring this condition.

In the article “Editorial: What Can Be Done to Prevent Autism Now?” published on the Autism Research Institute website, registered nurse Maureen McDonnell offers numerous suggestions to enhance the health of babies. [To read this article, please click here.] In addition to detailing ways mothers can improve their own health before and during pregnancy, she provides specific ways to help keep newborns and infants healthy. As she notes, “We don’t have all the answers. No one does. But let us consider the research that has already been done, the stories of improvement and recovery from parents who have traveled this difficult path, and let’s apply common-sense precautionary principles as we prepare for and enter motherhood. None of them can harm you or your baby.”

On the topic of vaccines, she advises parents to ask doctors to give only one vaccine at a time from single-dose vials instead of the more common practice of administering multiple vaccines from multiple-dose vials. In addition, she recommends that children who are ill—whether coming down with something, currently sick, or getting over an illness—should not receive vaccines. Moreover, children who are currently on antibiotics or have recently finished antibiotics should not be immunized. Essentially, vaccines should never be given to children who are sick or recovering from illness.

Furthermore, some children have ongoing health conditions or have inherited genetic predispositions that put them at risk for not responding well to vaccines, especially when multiple vaccines are given at once. Children whose parents have autoimmune conditions or allergies may have inherited these traits, putting them at risk for vaccine injury. Also, children who were born prematurely or who have ear infections repeatedly may have immune issues that make them vulnerable to vaccine damage. Consequently, if parents decide to have their babies immunized, they must determine potential risk factors, such as family health history as well as the child’s health history, before allowing their children to receive vaccines.

Another way to protect children is to avoid giving the commonly used pain reliever and fever reducer acetaminophen (brand name Tylenol), especially in conjunction with vaccines. While pediatricians often recommend giving acetaminophen to reduce pain and fever associated with vaccines, ibuprofen (brand name Motrin) is less likely to cause potentially harmful side effects.

In the article “Evidence That Increased Acetaminophen Use in Genetically Vulnerable Children Appears to be a Major Cause of the Epidemics of Autism, Attention Deficit with Hyperactivity, and Asthma” published on The Great Plains Laboratory, Inc. website, Dr. William Shaw explains in great detail how acetaminophen can damage the lungs, liver, and nervous systems of some children. [To read this article, please click here.] For his research, he notes that prior to the 1980’s, children were typically given aspirin for pain and fever. However, the appearance of Reye’s syndrome and Kawasaki disease in children and the potential link with aspirin made the use of acetaminophen rise dramatically. At the same time, rates of autism, asthma, and ADHD also increased significantly. However, countries, such as Cuba, where acetaminophen is rarely given, did not see epidemic growth in the number of children with these three conditions.

Through his research, Dr. Shaw discovered that acetaminophen produces toxins that can lead to “cellular damage and death,” “causes severe immune abnormalities,” and “depresses the immune response to vaccination.” Although he notes that more research needs to be done, he advises avoiding potential risks of toxicity by not giving children acetaminophen, especially in conjunction with vaccinations.

In addition to considering the risks of vaccines and acetaminophen, parents need to realize that they are their children’s primary advocates. In dealing with medical issues, parents may need to do their own research, which has been made much easier, thanks to the abundance of credible online resources. Additionally, parents must find doctors for their children who will listen to their concerns and not dismiss them as nervous parents. Parents should not allow themselves to be bullied by doctors, especially those who threaten to kick patients out of their medical practice for not following stringent vaccination schedules and policies. Trust in a doctor is good; blind faith is not.

A few days ago, my niece gave birth to her first child, my first great nephew. As we were chatting back and forth early one morning online, I debated whether I should warn her about potential dangers of autism. However, I would rather give advice now about potentially preventing autism than advice later about dealing with autism. Moreover, I knew she would understand my motives were only to protect her and her son. I typed, “One bit of advice: give him Motrin (ibuprofen) instead of Tylenol if he ever needs it for fever, especially after shots. Doctors won’t tell you, but there is a link between autism and Tylenol. I know why.” Her immediate response was a thank you along with a heart emoji. She understood. Now I will pray that God will watch over and keep her precious son healthy as He restores health to my precious son.

“We will not hide these truths from our children; we will tell the next generation about the glorious deeds of the Lord, about His power and His mighty wonders.” Psalm 78:4

More Than Words

Language impairment, one of the defining characteristics of autism, also proves to be one of the most frustrating aspects for those who have autism, according to a well-written recent article. [To read this article, please click here.] In “Communication: An Important Autism Life Skill,” published online July 29, 2018, in Psychology Today, Chantal Sicile-Kira notes that while sensory issues challenge adults with autism most, communication difficulties run a close second. As the author of acclaimed books on autism, namely Autism Spectrum Disorder and Autism Life Skills, as well as the mother of an adult son with autism, Chantal Sicile-Kira has devoted her life to her son and to sharing what she has learned about autism.

As she explains, children with autism often have motor skill impairments affecting their necks and mouths that make physical production of speech quite difficult. Instead of using words to speak, they may resort to attention-seeking behaviors, such as screaming. Because these behaviors are considered socially inappropriate, especially in older children and adults, the author emphasizes the importance of teaching nonverbal children with autism alternative methods of communication, such as typing or pointing to letters. Indeed, her nonverbal son, Jeremy, has benefitted from learning alternative means to communicate and has even co-authored a book with his mother, A Full Life with Autism. Nonetheless, he admits, “The hardest part of autism is not being able to talk.”

Even for those with autism who can speak, the author notes, communication can be difficult. Specifically, she describes the “hidden curriculum”––social skills that are not specifically taught but learned by following others’ behavior. These include eye contact, speaking at an appropriate volume, and reading people’s body language. Even knowing how to respond appropriately is important, as she cites the example of a teen girl with autism whose peers found her rude because she didn’t know how to accept compliments. Clearly, teaching language to children with autism requires thinking outside the box.

While we are blessed that Alex can speak and express his thoughts and feelings, speech has always been one of his biggest struggles. In addition to providing speech therapy for him, we also used his strengths to help him overcome his weak areas. For example, his precocious reading skills enabled him to connect written words to objects and spoken words. Using Post-it notes, I labeled objects in the house so that he would connect the objects with their written and spoken names. In addition, we used his love of books to develop his ability to connect written and spoken language by reading aloud to him daily. His phenomenal ability to spell words correctly, even as a pre-schooler, proves quite beneficial because he can spell aloud words when we can’t understand what he is trying to tell us. To help him with this task when he was younger, we bought him a Franklin Spelling Ace handheld electronic dictionary that allowed him to type words on a screen that he could show us and communicate what he wanted to say. Certainly, the advancements in technology in the past two decades now allow children with autism access to smart phones and electronic tablets that can enhance their ability to communicate with others.

Even now in his mid-twenties, Alex is still developing his speech skills, expanding his vocabulary by reading the dictionary and learning social language by eavesdropping on conversations. Moreover, his behavioral therapist has done an excellent job of teaching him the “hidden curriculum” that is often overlooked. She has worked with him on how to give and accept compliments, how to ask appropriate questions, and how to develop reciprocal conversation by asking and answering questions and sharing ideas and opinions on a given topic. While we still have to cue him on these social language skills, he is making good progress and knows the value of not appearing rude. Clearly, her lessons on the value of eye contact have made an impression on Alex because lately he has been leaning down to my eye level (since he’s several inches taller than I am) when he wants to tell me something he finds interesting. Being able to share his thoughts and feelings obviously delights Alex, and we are delighted not only that he can use language to share ideas with us but also that he wants to engage us in conversation.

Yesterday, I ran across a video of Helen Keller on You Tube entitled, “Helen Keller Speaks Out.” After an illness that robbed her of her sight and hearing at a very young age, she was able to learn to communicate with others by using touch to finger spell and read lips. Because her dedicated teacher, Annie Sullivan, knew the importance of teaching her language, she used unconventional methods to meet Helen’s needs. Despite debilitating disabilities, Helen Keller became an author and a public speaker. Even though she inspired many with her great accomplishments, she admits, “It is not blindness or deafness that brings me my darkest hours. It is the acute disappointment in not being able to speak normally.” While she may have been disappointed in her speech, I was amazed how well she could speak in this video. She goes to explain her frustration, “Longingly I feel how much more good I may have done, if I had only acquired normal human speech. But out of this sorrowful experience I understand more clearly all human striving, thwarted ambitions, and infinite capacity of hope.” Perhaps she underestimated her ability to communicate and the impact her words and her life have made upon others. Nonetheless, she emphasizes the importance of giving people with disabilities a voice, whether through sign language, an interpreter, or modern technology to allow a nonverbal person to communicate.

In the examples of Jeremy Sicile-Kira and Helen Keller, we clearly see the need to find ways to help people with disabilities communicate with others. Even with those whose language skills are less impaired, like Alex, we need to teach all aspects of communication to help them interact positively with others. Teaching those who are differently abled requires creativity, patience, and tenacity. However, knowing that those special people have something valuable to say truly gives us that “infinite capacity of hope.”

“The lame will leap like a deer, and those who cannot speak will sing for joy! Springs will gush forth in the wilderness, and streams will water the wasteland.” Isaiah 35:6

A New Approach to Interpreting Autism Behaviors

Because impaired social skills are usually associated with autism, researchers have often concluded that most people with autism prefer not to interact with others. However, a fascinating research article recently published online in the journal Behavioral and Brain Sciences contradicts previous assertions that people with autism lack motivation to engage with others socially. In “Being vs. Appearing Socially Uninterested: Challenging Assumptions about Social Motivation in Autism,” psychology professors Vikram Jaswal, the father of a daughter with autism, and Nameera Akhtar provide a fresh and informed perspective as to why people with autism engage in behaviors that may appear anti-social.

In their 84-page article (which can be accessed by clicking here), these researchers examine four behaviors commonly seen in autism and previously attributed to a lack of social interest: limited eye contact, infrequent pointing, repetitive body movements, and repeating phrases, or echolalia. As they conducted their research, they used interviews of children and adults with autism and their families, considered alternative reasons for behaviors, and examined unique ways people with autism use to express their interest in socializing. Explaining their novel approach, they note, “These steps are crucial, we believe, for creating a more accurate, humane, and useful science of autism.”

Previous scientific studies asserted that people with autism preferred not to interact socially. To demonstrate this view, the authors cite earlier research in which people with autism are described as “confined in their own world,” possessing a “powerful desire for aloneness,” and having “little or no social interest.” In contrast, the authors point out that behavior does not always truly reflect thoughts and feelings, providing the examples of people who smile when they’re sad or people whose Parkinson’s disease affects their speech that could make them appear aloof. While some behaviors in autism may be deliberate, such as avoiding eye contact due to anxiety, others can’t be controlled, such as repetitive hand movements. The authors assert, “These unusual behaviors do not have any necessary relation to social motivation, and some may constitute adaptive responses to the unique circumstances of being autistic.”

The first behavior discussed in this article, eye contact, is often considered lacking in autism. As the authors note, eye contact varies even among typical people, depending upon their personalities and their cultures. Too much or too little eye contact can give the perception of being rude. In addition, “gaze aversion,” or looking away, proves helpful for typical people as well as those with autism to help them concentrate and solve difficult problems. In their interviews with people who have autism, the authors discovered that people with autism might avoid eye contact because they find it easier to focus on what the other person is saying. Also, some people with autism find eye contact overwhelming or uncomfortable. They want to engage with others, but looking them in the eyes may be stressful, so they avoid eye contact, which may help them better focus on what the person is actually saying.

Another behavior that may be lacking in children with autism is pointing to obtain things or to share experiences or to draw attention to something. While this lack of pointing has been thought to be an indicator that children with autism do not wish to engage in social behavior, the authors instead conclude that motor impairments are the true reason. In interviews with people who have autism, they revealed difficulties in being able to move the ways they wanted. One adult with autism commented, “I had very little sensation of my body.” Consequently, pointing may not be an issue with social motivation but instead caused by motor and sensorimotor deficits. In addition, people with autism may have different interests than others and have different opinions as to what is worth sharing. As one adult with autism noted, ‘I’m not entertained by the ordinary things that most people enjoy.”

Along with lack of eye contact and pointing, repetitive body movements in autism have been connected to a lack of interest in socialization. These stereotypical behaviors include hand flapping, spinning, rocking, and finger flicking. For people with autism, these self-regulatory behaviors often act as coping responses to anxiety. As the authors note, all people engage in these types of behaviors; typical people might twirl their hair, bite their nails, or drum their fingers when stressed or bored. In people with autism these behaviors may be involuntary or intentional, but the authors emphasize that none of them have anything to do with social connections.

The fourth category of behaviors commonly associated with autism, echolalia, deals with the verbal repetition of words and phrases. These utterances may be dialogue people with autism have heard on television or in movies, or they may repeat words and phrases they have heard others say. Typically, researchers have deemed echolalia as meaningless, and this type of language is discouraged in children with autism. However, the authors reject the notion that echolalia serves no purpose; rather, they compare it to early language development in small children. They state, “But just because a listener is unable to decipher the meaning of an utterance in a particular context does not mean that the speaker did not have one in mind.” For some people with autism, echolalia conveys anxiety and may help with stress, just as a typical person repeats a mantra. Some may use echolalia to get others’ attention by using phrases they can say easily, and what others perceive as “nonsense” may be a phrase misunderstood because of difficulty with pronunciation. Therefore, the authors emphasize the need to find meaning and make connections in echolalia because this behavior indicates the person with autism needs and wants to interact through communication.

By re-examining these four behaviors common in autism, the authors conclude that people with autism want to interact with others, but they have different ways of showing this interest in socialization. Moreover, they contradict previous views of autism behaviors as deficits in social motivation by offering valid alternate explanations, supported by interviews with people affected by autism. Finally, they point out that the previous perception of people with autism lacking social motivation negatively affects research and intervention. For example, therapists, teachers, and parents often encourage children with autism to make eye contact and discourage them from using repetitive motions and echolalia. These attempts to change behaviors may leave the child with autism frustrated and anxious, and the child’s “motivation to engage with someone might diminish.” Ironically, in trying to make the child more social, these methods may make them less social. In addition, some therapists, teachers, and parents may mistakenly believe that children with autism do not want to interact with others and leave them alone. Again, in misunderstanding the behaviors, they may not provide precisely what the child needs and wants––social interaction with others.

With Alex, we have witnessed how the common behaviors of autism have faded over time. His eye contact has improved as his anxiety has subsided, but if he is concentrating on something, he may need to look away. When he was little, he had trouble pointing to things, and would use his flat hand instead to point out something. Clearly, his fine motor delays hindered his ability to use his index finger as a pointer. Over time, he has gained a bit more control and can point to things, usually words (often on signs) he wants us to see or insects he wants us to remove from his vicinity. Although Alex doesn’t repeat lines from television or movies, he does have certain pat phrases he repeats throughout the day. Several times a day, he tells us about “young voices” he heard on television or dates that have special meaning for him or certain events he remembers. When he’s really upset, he’ll complain about gas prices or not wanting to use a typewriter. Though these comments may seem out of place, he has trouble expressing himself, especially when he’s anxious, and he knows these phrases will cue us he’s concerned. Speech has always been a struggle for him, and he relies upon phrases he’s perfected through many repetitions to get our attention, share experiences, and convey his thoughts and feelings. He obviously wants to interact with others, but delays in language and motor skills, along with sensory issues, make socialization difficult. Nonetheless, Alex shows perseverance and continually works to overcome these obstacles of autism.

While autism may remain a mystery to many, those of us who parent children with autism have learned many of the secrets they hold in their minds that process the world differently than the rest of us. That the father of a child with autism would pursue the real reasons for common behaviors, despite how they contradict the tenets held by most autism researchers, doesn’t surprise me a bit. When all the pieces of the so-called autism puzzle are finally found and assembled, the workers around the table are likely to be parents of children with autism, striving and seeking to find ways to make their children’s lives the best that they could be.

“There is no speech and there are no words, yet their voice is heard.” Psalm 19:3