Figure 2. Overlapping circles, representing the overlapping symptoms of autism and other disorders.
It would be so much easier if there were some clearly identifiable traits of autism, or even only one kind of it. Down syndrome is relatively easy. There is a genetic marker for it—the 21st chromosome is tripled (typically, we have two copies of this chromosome). There also is a characteristic look among children with Down syndrome. However, even among children with Down syndrome, there are so many levels of development. There are children who never develop language. There are children who grow up to live fairly independently. There are children who can become professional actors (I loved the movie The Ringer with Johnny Knoxville, which showcases several actors with Down syndrome). It is getting more clearly understood that while genetics are important to autism, there are a whole interaction of events that take place in order to trigger it. Although evidence is mounting up that there is a genetic link to autism, it is still identified through observed behavior, not a DNA sequencing test. Thus, depending on how a child acts or behaves and how severe these behaviors might be, there are a variety of labels that might be applied.
Many mothers will use what Jenny McCarthy calls the University of Google. This can be supplemented by what I call the “University of Wikipedia” and the various small “colleges” of blogs, books, and organizations’ websites. In most of them, you will see terms that keep popping up—terms that you might have seen before, or you thought you knew, but now apply to a different context. It is like learning a new language: the language of autism. The common terms to describe various forms of are autism are listed below and described in the sections that follow:
This is a “blanket” term—it covers a lot of ground and vague characteristics. My child with autism can act, speak, and interact nothing like your child with autism. You can watch two children with autism in the same place and wonder how on Earth these two children could share the same label. There is a phrase I’ve heard many times: “When you meet one child with autism, you’ve met one child with autism.”
According to the Emory Autism Center (2009), individuals with an autism spectrum disorder are characterized by impairment in three areas of development: communication, socialization, and unusual interests/behaviors. The characteristics of this disorder can range from mild to severe. Likewise, cognitive and adaptive functioning can range from gifted to severely impaired. The autism spectrum disorders do not describe a delay in development, but rather a difference or deviation in development in the above listed areas.
It doesn’t help either that there are so many subnames for autism and overlapping terminology. All of them fall under what is called autism spectrum disorder or ASD. To add to the bewildering array of names, sometimes ASD is called Pervasive Developmental Disorders, and can include autism, Pervasive Developmental Disorder-Not Otherwise Specified, and Asperger’s syndrome. PDD-NOS is not to be confused with Rett syndrome or Childhood Disintegrative Disorder, but these subcategories do fall under ASD. Confused yet?
Boys are four times more like than girls (with the exception of Rett syndrome; see below) to be diagnosed. Essentially, there are five types of ASD, including: (1) autism (also called classic autism), (2) PDD-NOS, (3) Childhood Disintegrative Disorder, (4) Asperger’s syndrome, and (5) Rett syndrome. Throughout this book, I will use the term “autism” to describe all of the subtypes of ASD, not just classic autism. When appropriate to distinguish, I will distinguish Asperger’s syndrome from the others, because it differs most in the types of symptoms. The others differ in severity and cause.
When I discuss high-functioning autism, I will include all of these labels in the discussion. What I mean by high functioning are children with autistic behaviors who have the capability of interacting, speaking, and learning general education curriculum in a general education classroom environment with the right supports. According to Dr. Dawson and her associates (2007), these children have higher degrees of fluid intelligence rather than the more fixed intelligence related to memory and perception. In some cases, they can be identified as gifted as well, but I will primarily focus on the need to identify and teach to their abilities, rather than focusing on their disabilities.
Children with classic autism tend to function in the lower levels of intelligence, due in part to their language skills, which may be significantly lower than the other subtypes. In the past, many people with classic autism were institutionalized and many also had significant health or physical issues as well. However, there is a great deal of confusion in terminology between the word “autism” and the broader term “autism spectrum disorders,” which often include newer terms for variations of intellectual functioning, language, problem-solving abilities, and times of diagnosis.
I just love this term. “Not Otherwise Specified” is official language for “We have no idea” and “It’s not low enough to be called autism.” I call it the “There’s a problem in development somewhere, and who the heck knows why?” And it has its own acronym! My daughter had this label. Not very helpful. According to the Emory Autism Center (2009), PDD-NOS is defined as “a general category used to describe a pattern of behavioral differences (which may include deviations, excesses, or difficulties) in the areas of social relating, communication, and attention/interest)” (para. 3). It frequently is considered a milder version of autism.
This is perhaps the most heartbreaking of labels and the most rare. According to Dr. Fombonne (2002), only 1 in 100,000 people demonstrate CDD. This truly is where you are in Italy, and in a very short space of time, you are lifted into Holland. This term describes children who develop typically, and then around 3 to 4 years of age begin to regress—to disintegrate—right before your eyes. Children with this form of autism typically end up with more severe forms: very limited language, very limited social skills, and behaviors that are “classically” autistic. This is the version that most people think of when they think of autism.
This term is used to describe children who are on the autism spectrum, but do not have language delay, although they may have communication differences. However, they do have the social issues and often have the repetitive behaviors and sensory sensitivities of other children on the spectrum. It is a relatively new diagnostic term that was not included in the autism spectrum until 1995. Thus, most people identified as having AS are still under the age of 25. Many parents and grandparents will not have heard of it.
Often, children with AS aren’t identified until late elementary or even middle school, although more severe cases do tend to get identified earlier. And, as I can attest to in my friendship with Sam, there are a large number of functioning adults who weren’t identified but clearly have it. Sam could have an amazingly interesting conversation with people one-on-one with fascinating insights into politics, humor, and pop culture. He could quote entire episodes of Seinfeld that made us laugh. But put him at a party, and he would barricade me into a corner to talk about the same subjects one-on-one and not perceive the subtle social cues of shifting feet, “OK, well, that’s interesting, but ...,” and yawns. These children often grow up to become “geeks” and other not-so-nice labels. It is important to remember that it is a problem, and AS does not just represent overlabeling by protective mothers as some believe. It is equally important to realize that there are significant strengths that need focus and specialized development in order to grow.
It is important to note that at the time of this writing, according to Claudia Wallis of The New York Times, the American Psychiatric Association (APA) was considering removing both the terms Asperger’s syndrome and PDD-NOS from the 2012 revised edition of the Diagnostic and Statistical Manual for Mental Disorders (DSM)—the definitive book for mental health diagnoses followed by most professionals. Because of the vagueness of both terms, they announced plans to more explicitly define the term autism spectrum to include severity scales, and incorporate the issues faced by people with both PDD-NOS and Asperger’s under the ASD category.
This is a known genetic mutation on the X chromosome that can cause significant “autistic-like” behaviors and almost always occurs in girls. It is very rare, occurring only in 1 out of 10,000 to 15,000 people, according to the National Institute of Mental Health (2001). It also can be confused with cerebral palsy, because a child’s walking gait and movements can be spastic or jerky. Children often will have small heads and have little language abilities. They also have seizures and digestive issues. Children with Rett syndrome often will behave in ways similar to children with autism, but there is a known cause for their actions. It is not considered inherited, because it seems to be a genetic mutation that occurs randomly.
There are lots of other issues that children with autism may have as well. These are called “comorbid disorders,” and there appears to be some form of link between these and autism, but researchers haven’t found the linkages yet. I tend to think of them all as a vast Venn diagram with overlapping circles of characteristics (see Figure 2), with some children having some of the symptoms, and some not.
Figure 2. Overlapping circles, representing the overlapping symptoms of autism and other disorders.
Many children with autism have seizures in which their brain goes through a small series of electric shocks. Rachel, the mother of a child with autism, experienced this when her child became sick:
It was a very hot and busy day and I was treating him with Tylenol every 4 hours. His grandmother was holding him while I ran a cool bath for him. Suddenly he began to shake all over, his eyes rolled up into his head, and he went limp. I thought he had died. He was out for more than a few minutes and taken to the hospital. When we got there, his temperature was around 104, and I knew from how he felt earlier that this was cooler. His actual maximum temperature was never determined and therefore, it’s unclear as to the damage it may have done.
Doctors are quick to reassure parents that febrile seizures are not life-threatening and can happen many times in a child’s life. However, there is such a link between these types of brain seizures and autism that I have to believe that there must be some form of impact.
There are some very interesting research studies that have found links between autism and the digestive system at a chromosomal level. Many parents can tell you about their child’s “leaky gut” in which their child does not develop well physically, nor do they digest food well. Chronic constipation and diarrhea are common issues among children with autism. According to Shaw and colleagues (1998), there often is an overabundance of yeast and opioids in the digestive tracts of children with autism and a decreased level of necessary proteins. Similarly, phenylketonuria, or PKU, often is confused with autism because of the similar behaviors. Children with PKU are missing a key digestive enzyme that left untreated can lead to problems in brain development. In most states, infants are automatically screened for PKU with blood tests conducted right after birth, but it is important to know if your child was or not. Celiac disease often is suspected in many children with autism as well, as gluten-free diets appear to work so well in both populations.
Tourette’s is a genetic disorder noticed when the child develops a tic or physical and vocal movements associated with stress. The version that most people think of is the more extreme one where people shout obscenities and make highly inappropriate remarks. In reality, there are lots of children and adults with Tourette’s who do nothing more than clear their throats and blink their eyes when they’re anxious. However, tics can fall under repetitive behaviors, so there are many children who meet criteria for both autism and Tourette’s and there appears to be a certain amount of overlap. Dr. John Walkup (2006) noted that he gets more children with Asperger’s syndrome in his Tourette’s clinic at Johns Hopkins University than the university’s AS clinic. In addition, Tourette’s can be influenced by stress and anxiety, conditions that can aggravate autistic behaviors as well.
Many children with social problems act out when they are placed in situations where they have to talk with other people. According to the National Institute of Mental Health (2008), up to 18% of the general population may have anxiety disorders. Adults and children can get headaches, exhaustion, or muscle spasms. Some people with anxiety disorders have problems maintaining physical balance—an interesting correlation to their inability to maintain mental balance. My son, Raymond, has anxiety disorder and Tourette’s syndrome, and when he is going somewhere new, or something has happened in his life to disrupt his schedule, he will grunt, avoid eye contact, and be unable to eat. Obsessive-Compulsive Disorders (OCD) can fall under anxiety disorders as well, so there are overlaps of all kinds of issues.
Many children with autism experience sleep disorders, sleeping little at night, having bedwetting episodes, and being tired throughout the day. Colic among babies is common for an extended period of time and can last for years. Recent studies have found a link between lack of sleep and a large number of disorders, including autism and ADHD. This is true around the world (see Taira, Takase, & Sasaki, 2008).
A friend of mine has had her son in many sleep studies trying to figure out how to get him to sleep well. “I would give anything for a decent night’s sleep,” she says. “When by some miracle, he does sleep, everything is better—for all of us.” The professionals’ recommendation? Get more sleep. Have an established sleep routine. I was so annoyed for her! It’s a chicken and egg argument. Does autism cause the sleep disorder or does the lack of sleep aggravate autism? I certainly know that when Elizabeth experiences sleeplessness, her autistic tendencies increase and her language skills markedly decline. We laugh in our family that we can tell when she’s tired—she starts talking about herself in the third person (“Elizabeth wants popcorn”). Her pronouns decline dramatically. She falls more often. But we are lucky: She does tend to sleep well, but needs lots of it.
Having difficulties with language, many children with autism are unable to communicate their needs or questions. They can behave in ways that seem much younger than their actual physical age. Most commonly found in classic autism or CDD, the overlap with intellectual disabilities (formerly known as mental retardation) raises the issue of language because the ability to determine actual intelligence of a child who is unable to communicate with others is challenging. Intellectual disabilities can be found in anywhere from 25%–70% of children with classic autism, according to the Autism Society (2009).
Because of the delay in language or inability to understand others’ perspectives, reading and comprehension scores can lag significantly behind age peers for some children on the spectrum. Reading comprehension is a typical problem where the child can “word call” (or read words in isolation) but is not able to determine the meaning of the piece or make connections between readings.
Because some children on the spectrum learn to read and do math at very young ages, they can be gifted in many areas. Because of their ability to focus, long attention spans, and deep interest in a subject, many children with high-functioning autism also are gifted. There is a significant overlap between Asperger’s syndrome and gifted behaviors, according to Jim Webb and his colleagues (2005). Most children with autism and giftedness tend to prefer nonfiction and scientific topics and will explore the content in-depth in their particular area of interest. Giftedness to the level that is identified by a school district is not common, but it is a possibility.
Many children with autism almost appear to have an allergic reaction to their lives. Their immune systems are compromised and they often are unable to fight off colds, allergies, and other illnesses. According to Drs. Konstantareas and Homatidis (1987), ear infections appear to be more rampant among children who eventually get diagnosed with autism and many parents report that their children were given frequent doses of antibiotics when they were babies. It is not clear if the immune system issues are a cause of, or a result from, the autism or linked through genetic relationships.
My goal in this section is for you to have some language to use when you’re trying to get someone to listen or to help. When you’re first aware that something’s “just not right,” how do you move beyond that vague concern to making a professional listen? Your mother-in-law, your babysitter, your sister—they all know that something is not quite right, but how do you describe it?
There’s a whole host of official jargon that you will have to plow your way through. When I teach college freshmen to start speaking “educational-ese,” I teach them to think of it like learning another language. Autism has yet again a whole new set of words to learn. Words you thought you knew the meanings of don’t quite mean the same thing in this new journey. This is not even close to an exhaustive list, but it’s a starting point for you. For more information, please seek out more specific texts, or check with the professionals with whom you work.
Typical and Atypical
These are words to describe what most children do at a specific age in a specific time and place. It is important to not think of them as normal and not normal, although most people do. Normal implies judgment—something you want your child to be. It is considered typical of a 4-year-old child who is moving from one city to another to act out and cry while he or she is in the grocery store. However, is acting out and crying considered normal when he or she is in the grocery store? Normal doesn’t really take background situations into consideration. In typical/atypical, you look for things that aren’t really explained by the age or the situation. There are lots of young children who act out, scream, or focus on objects, but for how long, at what age, and what else is going on?
Spectrum
Autism is a spectrum disorder, which means that there are degrees of severity among a whole lot of different characteristics (see Figure 3 for a visual representation of a spectrum). There are some children who will exhibit mild characteristics and others with very severe symptoms. There are many children who do not qualify for services who exhibit some of these characteristics, and other children who do qualify who demonstrate very different characteristics from each other. The phrase I often use is “children on the spectrum,” which can include all of the various forms of autism, including CDD and “classic” autism on the lower functioning end, Asperger’s syndrome and PDD-NOS on the higher functioning end, and Rett syndrome, which can occur across the spectrum of functioning.
Figure 3. Visual representation of a spectrum.
Characteristic
The use of this term means that children might show a certain behavior, and that many other children with autism have this same type of behavior. But it may not be enough to qualify for a label, or there may be other significant characteristics that are missing. It’s a bit like looking at one puzzle piece and saying, “Yes, that looks like it goes to that puzzle, but without the other pieces, it’s hard to say.” Children may exhibit autistic-like characteristics and not qualify for autism, but they still act differently.
Criteria
Criteria is the official term for the level of intensity and combination of characteristics that have to be there to qualify for the label (in order to be treated or receive services). Criteria do not imply severity; just that according to an outside authority, the child meets the standards for that label on multiple characteristics. For example, children with social impairments and repetitive behaviors but without language delays might fit the criteria for Asperger’s syndrome, but not for PDD-NOS.
Dysfunction
Dysfunction means that something does not work well or the way it’s supposed to for others of the same age. Social dysfunction means that children don’t socialize the way that other children do. It’s a global term that tries to take out the judgmental aspect without going all the way to the term disorder. According to my husband and mother, I have an organizational dysfunction, but it’s not a significant problem for me. It may be annoying for my husband, who has to see my bedside table piled with things that I’m doing at the time—a sewing project, three books, several cards in process of writing, random earrings I took off and didn’t take back to the jewelry box, and so on—but it’s not a real problem in my life. I can find things I need to and my life is not deeply affected. Still, a dysfunction can become a disorder or disability if it gets too significant in a person’s life.
Disorder
Disorder implies that the ability that is impaired is creating a significant problem in a person’s life. However, disorders are not assumed to be permanent and can sometimes be “cured” given appropriate treatment or developmental growth. However, it is important to know that treatment for a disorder is not an equation—there is never one known “right” way. There may be many, many strategies and treatments available that may or may not be effective for a particular child.
Disability
Disability means that there is a dysfunction that creates significant problems for a child, and it is assumed to be a permanent situation. However, although it may be permanent, there are still strategies and techniques that can help the child learn to cope. Many people have learning disabilities or behavior disabilities, and they can be taught to cope with them. I teach my prospective teachers that you can’t teach someone to overcome his disability, but you can teach him how to learn around it or cope with it. An example of a disability would be someone with artificial limbs. He can learn to run again with a prosthetic leg, but he can’t ignore the fact that his original leg is missing. Someone with a learning disability can learn to cope and function, but she can’t ignore the fact that she learns differently.
Handicap
Handicap is the old term for disability, but there is an underlying assumption that the condition cannot get better. Thus, you have handicap parking because the problem that created the need for a person to need to park close to a store is not going to get better. My college sweetheart’s mother had a handicapped sticker because she had a serious heart condition. That heart condition could not be “taught” to get better.
High Functioning Versus Low Functioning
There are no clear-cut differences between high-functioning and low-functioning children with autism. The informal understanding is that children who are high functioning have stronger language and problem-solving skills, and have slightly below-average to above-average intelligence. There is a tremendous overlap with both Asperger’s syndrome and PDD-NOS. According to Happé (1999), children with high-functioning autism have a different cognitive style, not ability, and score higher on fluid intelligence tests. Children who are low functioning tend to have characteristics that are more severe, lower language, lower intelligence scores, and often have other issues as well. Traditionally, Asperger’s syndrome and PDD-NOS are considered higher functioning, while CDD and “classic” autism are lower, but these labels can vary widely from child to child. When I describe my daughter as high functioning, I am trying to imply that she is on or above grade level in most academic subjects, still struggles with language to some degree, still has some sensory and social issues, and you might not even know that she had autism if you met her. My friend Tara’s nephew, who is low functioning, has very limited language, just got potty trained at age 11, and is in a self-contained classroom in his school. There are lots of children in between, above and below them, but all of them have autism and yet all of them are unique.
There also is a greater chance of high-functioning children “recovering” from autism. According to a 2009 study by Dr. Fein and colleagues, between 10%–20% of children diagnosed with high-functioning autism between the ages of 1 and 3 no longer qualified as having autism by the age of 9. Some parents and methods claim that autism can be “cured,” but it would appear from Dr. Fein’s work, as well as work by Dr. Kogan from the CDC (2009), that children with high-functioning autism who receive intensive early therapy are better able to overcome many of the debilitating issues they face.
Behavioral Terminology
There are essentially five ways you can describe a child’s behavior. Use the terms correctly, and you’ve gained instant credibility from a professional. These also will help you explain to your mother or your grandmother what the difference is between your child’s behavior and “spoiled.” It is important to know that the visible difference between a spoiled child and a child on the spectrum is in your responses to the behavior; if you are consistent, firm, and follow through on natural consequences, then the problem is your child’s response to good parenting. Of course, that then places the burden back on you to prove your child’s problems, and not be blamed for them, because the tantrums that a child on the spectrum can throw can look an awful lot like the tantrum of a child whose parent is too tired and too unwilling to be the enforcer. Much of the difference lies in what appears to cause the problem—is it manipulation of the situation or being overwhelmed by the situation? Are they engaging in a power struggle with you, or are they searching for power of any kind because they feel so out of control? It often is very difficult to determine the difference and to describe the differences. But if you know that you’re doing the best you can, ask for help and use the vocabulary below to assist you.
So, given all of these overlapping names and types and other issues and words, what are you looking for? What behavior are you trying to describe? Autism and other spectrum disorders are diagnosed when there is a problem in three areas:
Although not often part of the official diagnostic criteria, the following characteristics are noted among kids with high-functioning autism.
There are variations of these. Children with Asperger’s syndrome tend not to have language delays, but do have significant social impairment. Children with PDD-NOS tend not to be as low on all of these characteristics as a child with classic autism or CDD. Children with epilepsy or intestinal disorders also may have other physical symptoms.
But what do these look like? Not every child is going to exhibit all of these. And many children without autism exhibit some of these characteristics, and many of these characteristics overlap with other exceptionalities, including giftedness. But look at the list holistically—is there more than one characteristic that is significant? Do they cause a problem, rather than just being a trait? Does your gut instinct tell you something is wrong? Most importantly, do you worry? If you do, it’s worth checking out.
There are several characteristics of autism spectrum disorders to look for and to be able to describe to your doctor/therapists. Your child may not exhibit all of them, but you need to be able to describe them; either to say, “No, my child doesn’t do this,” or to say, “This is what I’m seeing.” For more information on helping you spot characteristics of autism, please go to a more in-depth source. This is not meant to provide significant information—just an overview of some of the more common issues. I have listed several sites for you in the Resources section of this book that should be helpful.
Language is the most significant characteristic of children on the spectrum. What they say, how they say it, and when they talk can be affected. However, it also is one of the hardest issues to get anyone to help you with. Before the age of 2, there are so few words that most children say, so much room for individual differences, and so many myths about how children talk:
Some of these myths are rooted in reality—children do develop in highly individual manners. My first child walked at 9 months; my second at 13 months. Both are well within the range of “normal” for that developmental milestone. But, if you have questions or concerns, see a professional. A delay may be just that—a delay that the child will overcome on her own. But a significant delay may need some assistance to overcome. And language forms the foundation of almost all learning, a critical process to further development.
Language problems can range from delayed, to nonexistent, to blurry, to just strange usage. And it’s important to recognize that language is not just spoken language, but the whole process of communication—facial expressions, gestures, body language, and reactivity.
Nonverbal language usage is a key trait to verbal language. Many children on the spectrum do not use nonverbal gestures, such as pointing, to communicate. Karyn Seroussi (2002) shared how excited she was that her son was learning how to point, until the therapist said that typical children don’t have to be taught how to point—they do it automatically.
Echolalia is a frequent issue with kids with autism. They will repeat things that they hear either immediately afterward or quite a while afterward. The key is that they are repeating what someone else has said, not generating unique phraseology on their own. Elizabeth, when she didn’t know the answer to a question, would pull something out of her repertoire—often something she heard on television. I would ask her what the weather was doing outside, and I would get a few sentences from the newscast the night before. We used her ability for echolalia to teach her scripts: “When someone says this, ‘How are you, Elizabeth?’ You say ‘Fine.’” A friend of mine’s son, who is lower functioning, particularly loves Elmo, even though he’s 8, and will provide you sentences from “Elmo’s World” when you try to engage him in conversation.
Echolalia can be sneaky. You might think that children with autism are having a conversation, or even talking to themselves, until you realize that they’re feeling the words around in their mouth, almost from an experiential sensory process. Recently, my son was fascinated to learn what the “F” word was. I had told him that I wasn’t going to teach him what it was, but when he thought he knew what it was, to come and talk to me about it. On a class field trip, an oh-so-helpful boy in his class taught him the full range of George Carlin’s Seven Words. Ray popped into the car that afternoon, full of questions and asked, “Mommy, is the F word F—k?” Ahhh ... the end of innocence.
“Yes, Ray it is ...” I said sadly, realizing my son had made an important vocabulary leap, followed by a full-on parental lecture on why we never, ever say that word. Ray listened politely. I then heard him whispering the word, rolling it around in his mouth, feeling it out, trying different emphases and tones.
“Huh,” he said, disappointedly. “I thought it would be longer.”
Words are sensory things. The short bark of the “F word” is short, sharp, and harsh. The rhythm of the word “Savannah” has long been a favorite of mine with its cadence and relaxed mouth muscles. Kids with autism will feel the words in their mouth, and often completely ignore the meaning behind them.
Echolalia also is a word-finding strategy, but as Mize and Hensler (2008) noted, it is a positive sign as it demonstrates that the child is using language for communication purposes—he or she just has no idea what words to use. Children who do not have a strong grasp on finding or understanding words may reach for what they’ve heard before, or, more likely, learned on television or heard from others close to them. They do not understand the question, or cannot find an appropriate response, and so in an effort to remain engaged, will parrot back something that caught their attention at an earlier time. The frustrating thing is that echolalia really is a desperate strategy of staying engaged, but it ends up cutting off conversation as the other person has nowhere to go.
Interestingly, music seems to play a role in echolalia with its ability to help kids remember words. Many kids with autism will be able to sing back television theme songs or repeat music heard off of the radio. For reasons we don’t quite yet understand, music is processed in the brain in a location different than the place where language is processed. Therefore, it can be more accessible at times when words are not available. Studies, such as Dr. Oldfield’s (2006) in Australia, found that music decreased echolalic and “acting out” behaviors.
With no musical ability at all, we have learned to sing and chant things that Elizabeth and Ray need to remember on the days that they are not overwhelmed by the “noise” of music. The morning schedule? Posted visually and sung to them. “This is the way we clean our room, clean our room, clean our room ... We put clothes away, clothes away, clothes away ... We make our bed, make our bed, make our bed ...” I will hear them humming it as they (badly) make up their beds. Some issues, such as messy rooms, are just not unique to kids with autism.
Dyspraxia/Apraxia
There are many overlapping terms, but all have to do with muscle coordination; in the case of language, dyspraxia is a condition where the tongue muscles are difficult for the child to move smoothly and it requires great effort for the child to make clear sounds. Children with autism can hold onto “baby speech” for far too long. When Elizabeth is tired or hurt, she will call herself “Ewizabeth.” It takes great concentration and energy for them to keep their tongues active and toned. “L”s and “R”s, difficult sounds even for typical children, can be very challenging for children with autism.
A symptom of dyspraxia, and perhaps as a result of possible poor neurological connection, is that the child often will put things in his or her mouth. It was explained to me by our speech therapist that a baby’s first nerve is the shortest and strongest one from his mouth to the center of his brain. Babies put things into their mouth because that’s the first way they learn about things—it’s their version of looking at something carefully. They’re putting deep pressure on their upper palate, creating a stronger sense of connection and stimulation. Because touch and sight senses develop more slowly, they really do “know” things first by the way they feel in their mouth. Kids with autism often have scrambled sight and touch senses, so their mouth remains their best way of learning about the world. All I knew is that Elizabeth had a very difficult time stopping her pacifier, and I was always pulling things out of her mouth. Choking was a constant fear of mine. Even now, when she’s tired, she’ll start sucking on her hair. My friend Tina’s son still sucks his thumb at age 13. We always have gum on hand in our house to keep Elizabeth’s mouth occupied with a socially acceptable activity. Sucking is both a means of soothing stress as well as exploration and stimulation in all children; it’s just that this soothing and exploration continues in children with autism.
According to speech therapist Valerie DeJean (2006), dyspraxia is found in poor muscle tone and poor muscle planning in movements beyond speaking. Children with autism often do not perceive their body as completely as they should and so can have a symptomatic gait or stiff-legged walk. Poor muscle tone can show up in other ways as well. Ray has terrible handwriting because he does not hold a pencil firmly enough. He can stand straight up, but his whole body is sort of “noodle-y.” Buttons and zippers can be extremely problematic. Children with autism know how to manipulate them, but not their purpose or how to make them achieve their purpose. Brandon’s mother complains about how difficult it is to find shoes for her 13-year-old son because he needs them to fasten with Velcro™. He does not have the physical dexterity to tie his shoes.
Dyspraxia also relates to these children’s ability to perceive things in space relative to other things. For example, they can spin the wheels on a car, but they don’t understand how that is representative of a car going down the road. Thus, when asked to “make the car go,” they experience frustration.
Problems With Pronouns
We can tell when Elizabeth is having a particularly problematic day because she starts talking about herself in the third person: “Elizabeth wants to go play.” For some reason, perhaps because pronouns are representative of the thing, not the actual thing itself, children with autism can have problems with first- and second-person pronouns, using “he/she” for “I” or “I” for “you,” and confusing gender pronouns with each other.
Global vs. Specific Terms
Children on the spectrum often don’t understand “umbrella terms” or words that mean a series of actions, rather than one specific thing. They have challenges making generalizations between one activity and how it might relate to other activities.
The other day I made Elizabeth cry when I called to her to “come clean the kitchen.” She just stood and looked at me and I thought that she was being willful—a very strong possibility. “Clean up the kitchen, Elizabeth!” I repeated.
“What do you mean, mommy?”
“I mean clean the kitchen!”
“I don’t understand.”
“What don’t you understand? I told you to go and clean the kitchen, and I mean now!”
Prolific tears then came: “What do you mean by ‘clean’? What am I supposed to do?”
Guilty! Bad mommy moment. I looked down at my daughter who had just taken the “Big Girl” responsibility a few months before of washing the dishes and realized that she didn’t know that that was synonymous with “cleaning.” I had to take a deep breath and explain that “clean” is a large, vague term for wiping down the counter, rinsing the dishes ... all of those small tasks that involve cleaning. Elizabeth often has problems with global terms such as “check your work,” “clean your room,” “go play,” “be nice,” “use your manners,” and “Are you finished?” There are so many parenting admonishments and questions that are too vague for her to understand. She often gets in trouble at school for similar things. She lives in a world of specifics.
Concepts are particularly hard for children with autism. Concepts are vague and include many other skills in them. Because children with autism often don’t generalize, they aren’t sure what specific skills are being called for when they’re asked to do something.
It is important to note that this need for specificity can sometimes be an area of strength. Often these traits can lead to a deep fascination with computers and math. After all, computers are as precise as they are and math is the process of quantifying things!
Word Finding
Finding the right word for the right situation often can be a challenge for children with autism. They use vague words like “stuff” or “that,” or phrases designed to fill in conversational gaps such as “You know.” When asked to tell backstories or events, they have a hard time retelling them.
There are times I can almost see the wheels working in Elizabeth’s head as she searches for what it is that she wants to tell me. There are a great many websites out there about how children with Asperger’s syndrome and autism feel like they are from another planet, aliens if you will. Although I certainly don’t believe that my daughter is the result of an alien abduction, as some conspiracy theorists believe is the case about “aspies” (she looks entirely too much like me and my husband for me to believe this!), listening to her search for words is somewhat like listening to someone who is learning English as second language. The easy familiarity with the language is not there, and so there is a translation effort that occurs as she works incredibly hard to communicate with others around her.
Lack of Imagination
Because imagination is formed when a child can generalize beyond the here and now into a hypothetical realm, children on the spectrum often have a great deal of trouble with imagination. Hypothetical situations, estimating, and other broad thinking activities tend to be very difficult for these children. They often can see things in black and white, and complex issues are very difficult to understand.
My daughter didn’t know what to make of it when our local Nature Center was encouraging children to make fairy houses. She was very confused because she knew that fairies did not exist, and yet, here were grownups telling her that they did. She assumed that she was wrong and went around looking for fairies. She wasn’t confused between imaginary and real—she just didn’t understand what imaginary was.
Hyperlexia
Hyperlexia is a condition where a child develops a precocious ability to read, often along with a fascination of letters and numbers far above their age peers. However, as opposed to giftedness where advanced reading is characteristic, hyperlexia has a corresponding problem of language usage or verbal understanding. Thus, children with hyperlexia have very strong word-calling skills, but often cannot tell you what it is that they’ve read. Or, conversely, as is the case of children with Asperger’s syndrome, according to Lynn Richman (1997) from the Hyperlexia Association, they can understand what they read, but cannot understand something told to them. They also have great challenges summarizing what it is that they have read. Hyperlexia often is paired with autistic behaviors.
My family has a history of thinking in visual words. That means that when we talk, we have to see it first in our mind. We laugh about how people cannot tell us directions, we have to see it written down. It is a learning style that is shared with other people, but is a very strong one in my family. Consequently, we read a lot and I read a tremendous amount to Elizabeth and Ray, trying to create emotional and physical connections, as well as developing concepts through books. For example, I bought The Berenstain Bears Visit the Dentist to prepare them for their first dentist visit. We understand things when they’re in a book and it helps ease the anxiety produced by the experiencing of it.
Although I wasn’t intentionally doing it, using hyperlexia often can be a method of therapy. Reading aloud to a child a book as she reads along is a means of allowing her to connect the visual with the auditory, thereby reinforcing the process of language. In his 2000 book, The Mind Tree, Tito Mukhopadhyay, a child with autism who is hyperlexic and wrote the book when he was 8 years old, shared the insight he got when he finally realized that “the voices related to people and lips” (p. 16).
Pedantic
Many children on the spectrum can have excellent language skills and have fantastic vocabularies. However, they also can have very little emotion in their voice or face when talking and will use “fancy” words, when simpler words might be more appropriate. They can be called “little professors” (which I find funny and irritating, my being a professor and all).
I can always tell when my husband is stressed—he will start using words that are multisyllabic and precise. I believe that the pedantic language is an attempt to control the chaos that they feel when they are in a stressful situation and are trying to get a precise understanding of it for themselves, without really paying attention to the needs of their audience.
Certainly social problems often are caused by and worsened by the language problems. When children can’t find the words for a given situation and can’t communicate their needs and wants, everyone can get frustrated. But there are several characteristic social behaviors of children with autism.
Lack of Obvious Emotion or “Flat Affect”
Affect is considered to be the visual representation of responsiveness and emotions: the smile, the frown, the eye contact. This is probably one of the most significant characteristics of autism. Children with autism just don’t look or act like most people do when emotions are involved.
Gus was an 8-year old boy I knew with Asperger’s syndrome who was obsessed about his cat, Sunny. He wrote stories about Sunny, talked nonstop about Sunny, and would give you detailed information you really didn’t want to know about Sunny (I well remember the day that Gus told me all about Sunny throwing up). Then, one Tuesday, Gus started talking about trains. He was telling me about speeds, and types, and histories ... everything I ever wanted to know and more about trains. I was surprised and amused that within a day’s time, Gus could find a new fixation. I told his mother that afternoon, “Looks like Gus got off his obsession with Sunny and moved on to trains.”
“Sunny died last night. He got out and was run over by a car. Gus saw it happen,” his mom told me, with tears in her eyes.
I was shocked! I had no indication at all that Sunny had died in such a horrific manner, or that Gus had witnessed it. With any other child, I would have expected him to tell me, to express sorrow, to be terribly upset. However, Gus gave every impression of not caring at all about it. Because I knew Gus before I knew much about autism, I was rather disturbed at his apparent callousness and lack of connection to this pet that I assumed that he loved. I made the assumption, that many people do, that people with autism do not feel emotion.
The opposite is true in many cases, however. Often, people with autism care so deeply that they don’t know how to deal with it. The power of the emotion overwhelms them and they shut it down. What appears to be callousness or negativity actually is a coping mechanism. They may appear not to have emotion, when what they’re doing is stuffing down intense emotion that then releases itself in a tantrum or torrent of tears or extreme agitation or hides through a lack of response.
When my son Ray first meets people, he refuses to make eye contact. His face shows no emotion and he will answer in single syllables. I have spent so much time explaining to people that “he’s shy,” when someone says “Hello” to him, and he refuses to answer. People tend to forgive “shy.” They’re less forgiving of “He’s got an anxiety disorder and you’re stressing him out by talking to him.”
And yet, he absolutely desires people’s positive attention. Raymond craves positive approval so much that when you point out something even moderately negative, he will shut down with a ferocious, withdrawn expression on his face and resort to grunts. However, he cannot tell you what he is feeling. He can’t verbalize his feelings of anger or hurt. I have learned to stop my instinctive “No, Ray!” when he is about to do something he shouldn’t—reach too high for a glass bowl, walk out into a parking lot without me, or do a problem using addition instead of multiplication—with a question of “Why is that not a good idea?” Turning it into an intellectual exercise allows him to deal with the pain of negative attention coming his way.
Lack of Eye Contact
Many children with autism can’t make eye contact. The anxiety that they feel when they connect eyes with someone can overwhelm them. They would rather focus on a detail about a person—his shirt, his buttons, anything other than the emotional upheaval of sharing eye gaze. And because they don’t process language in quite the same way, they often are unresponsive to their own names. It’s as if they just don’t hear it as a name or as anything related to themselves. Often, a child not responding to her own name is a trigger for many parents to start to believe something is wrong.
Rozella Stewart (2000), from the Indiana Resource Center for Autism, shared the story told to her by a well-educated man with Asperger’s syndrome, who stated that, “If you insist that I make eye contact with you, when I’m finished I’ll be able to tell you how many millimeters your pupils changed while I looked into your eyes.” Eye contact is so invasive to their psyche, most people with high-functioning autism can’t do it. And yet because of the communication component needed by typical people, developing eye contact is one of the first, and hardest, things that therapists focus on in behavior and communication goals. Being able to look people in the eye is a key first step of communication.
Inappropriate or Delayed Interactions
Often it seems as though children with autism try to learn the social codes without truly understanding how or why they work. For example, Gus did not understand the concept or need for personal space. He would be so excited about what he was talking about that he would creep closer and closer to you until he was literally inches from you. He would be gesturing wildly, and the person to whom he was talking would be inching away looking very uncomfortable. One day, Gus made me laugh when he implemented a strategy he had obviously been taught. He was chattering about something, probably trains, when he stopped himself, and said quietly, “arm’s distance,” and carefully measured the distance from me using his arm. He then looked at me for approval, and was off and chattering again. He didn’t feel the need to be an arm’s distance away from his audience, but he had been taught exactly how far he needed to be in order to make other people comfortable. He was learning the code, without completely understanding the reason for it.
My son appears to have understood the code for children his own age quite well. He plays games well and has a great sense of imagination. My daughter? Not so much ...
One day, my 4-year-old son had his best friend, a 5-year-old girl, over to play at the park. “Let’s play dinosaurs,” my son enthusiastically suggested.
“Let’s play house,” she replied.
“Let’s play dinosaur house!” he retorted, and within minutes, they were setting up rocks as a Tyrannosaurus rex’s house, and he was running about to steal eggs for dinner. She was the dinosaur mama and was cooking the stolen eggs while he busily defended the home with ferocious teeth. Beyond the obvious sexism, I was deeply amused at how Ray was able to combine two games of play into a game agreeable to all and to truly live his play.
Meanwhile, 5-year-old Elizabeth had been swinging and gradually wandered over to the action. “Mama, I want to play,” she told me.
“So, go play with them, honey. They’re good at figuring out things to do.”
So Elizabeth went and stood stock still in the middle of their “kitchen.” “Will you play with me?” she said in a plaintive tone.
“Sure!” replied her brother. “You can be Sister Dinosaur!”
“I don’t want to play dinosaurs,” she whined. Ray shrugged and zoomed off with arms widespread, turning into a velociraptor. All dragging arms and droopy eyes, Elizabeth came back to me crying: “They won’t play with me, Mommy!”
Oh my darling girl: How do I, as an adult, help her navigate the strange world of 5-year-olds? I suggested that she invite them to climb the play structure when she stopped crying. That time it worked, but later? As a 10-year-old? Lord help us, as a 13-year-old? And as a 16-year-old starting to fall in love? Ah me ...
Theory of Mind
There is a developmental step called “theory of mind” that develops in most children around age 4. They can understand that what they can see and think and feel is not necessarily what other people can see and think and feel.
There is a famous test, devised by Dr. Simon Baron-Cohen (see Baron-Cohen & Leslie, 1985), called the “Sally and Anne” test, where you can test to see if children have reached this understanding. Essentially, the child is presented with two dolls named Sally and Anne, a bucket, a basket, and a story that is carried out using the dolls. The child is told that the dolls are playing and that they hide a marble in a basket. Sally then goes for a walk. While she is gone, Anne moves the marble into the bucket. When Sally returns, the child is asked, “Where does Sally think the marble is?” If the child has theory of mind, the child will understand that even though he or she knows that the marble is in the bucket, Sally thinks that the marble is in the basket. If the child does not have theory of mind, he or she will fully believe that Sally thinks that the marble is where the child knows it was moved. He or she will be unable to understand that other people do not know or are not interested in the information or beliefs that they have.
Most children develop theory of mind around age 4 naturally and cannot be hurried into it. I remember trying to teach my 2-year-old son this concept. He was looking at a picture book in his car seat in the backseat while I was driving. “What’s that?” he asked, pointing to the book.
“I don’t know, Ray. I can’t see it,” I responded.
“That, right there!” he insisted.
“I can’t see it, sweetheart. I’m looking forward, you’re looking at it. I can’t tell you because I can’t see it.”
He then proceeded to have a complete meltdown right then because he just knew that I was holding out information on him. It was a learning experience for me about the power of developmental thought and how important it was to be able to understand other’s perspectives.
Often, children with Asperger’s syndrome will not be able to fully demonstrate theory of mind. They do not understand that other people are not as fascinated with geology, trains, animals, space, or whatever they currently are involved with. They do not understand why other people behave or feel differently than they do. They are unable to understand other people’s reactions to them other than as an intellectual problem. This trait also can be found in gifted children who also can have strong interests and express frustration that other children do not understand or follow their rules. However, in most gifted children, they are advanced in their developmental process and are thinking like children much older than they are and are frustrated at their peers’ inability to think at the same level.
There is a characteristic look in the eyes of children with autism that I can now recognize. It’s a bit of a “lost” look as they look out from eyes that want to engage, want to belong, but aren’t quite sure how. They are strangers in a strange land and are trying to figure out how these other people work.
Repetitive behaviors is a pretty broad term for actions that are done over and over again for the purpose of soothing or stimulating. Sometimes they’re easy to recognize: rocking of the body, head banging, and flapping of arms. They can also be verbal: hooting, humming, or whooping. It is very important to know that repetitive behaviors are ways that all people deal with stressful situations, both positive stress and negatives stress. We all know people who eat, tap pencils, jiggle their legs, chew their fingernails, and twiddle their thumbs. It’s not the process of moving that is a characteristic, but both the intensity of the repetitions and the cultural appropriateness of the situation. Many people hum to themselves when they’re standing in line or bored. But most do not hum during a business meeting. Many people will clap their hands or shake them when they’re excited about something, but most don’t flap their whole hands or arms. According to the Watson Institute (2005), repetitive movements tend to appear in children with autism around age 2 and peak around age 4.
Lines
Parents often first notice their child’s autistic-like behaviors when the child lines up toys, sorting by color or some criteria unknown to the watching parent. Aaron, a friend’s son, would arrange his toy vehicles according to function: road workers first, mass transportation second, cars third, and “other” last. Typical children also will line up cars, but they play with a car as a car, not as a thing that is blue or spins.
Obsessions/Compulsions
Repetitive behaviors also can be collections of things that people keep around themselves or actions that have to be done. A friend of mine collects rocks—not just a few, but roomfuls of rocks, particularly quartz and geodes. He says that the rocks soothe him because he understands their crystalline nature and being surrounded by their various structures gives his life a feeling of structure. Other children may fixate on one topic and try to learn everything there is to know about vacuum cleaners, and then abruptly switch to airplane schedules. Again, for a child who is high functioning, this is behavior that is similar to characteristics found among gifted children. The difference is the problem that the obsession creates: Can the child switch to another topic or is she locked into only the topic of interest, despite whether another person may or may not be interested?
Stimming
Short for “self-stimulating,” stimming is when a child fixates on a repeated action, deriving great enjoyment and a feeling of peace from the action. It can be rocking, spinning, flapping, bouncing a ball, masturbating, closing a door, hitting his head, pulling on jump ropes, repeating a phrase ... anything that is repetitive, sensorial, and reduces anxiety for the child. The difference between stimming and self-soothing behaviors is small—most people will jiggle pencils, twitch their feet, or fidget with their fingers. But when children are stimming, they often are oblivious to anything else around them and it serves to cut them off from social interaction, rather than allow them to engage in it. On one very bad day, my son locked into a phrase of “Bad Daddy” when he and my husband had locked horns and he was being sent to time out. Ray threw a 3-hour tantrum, repeating “Bad Daddy” for most of it. It was truly fearful to see him so completely out of control of his own mental state and to be using the phrase to express his anger, frustration, and fear of his own reaction.
Tito Mukhopadhyay (2000) at the age of 8, wrote that he spun because he felt that his body was a series of disconnected parts. He would see his hand and feel no sense of connection between that and his foot. He spun because he had seen that the fan blades, which were disconnected parts, would form a whole circle when they spun. He felt through the sensation of spinning that he could truly feel his body as a whole. On the other hand, Amanda, sharing her experiences via YouTube, noted that stimming is how she interacts with the world; how she gets to feel connected to and learn about the world directly without the need for language to intervene. Clearly, stimming is a significant need for children with autism and relates to their jangled neurology.
There are a whole host of other issues that many children on the autism spectrum seem to experience. There is limited research data on many of these issues, and so they are not part of the diagnosis process. Hard science professionals express doubt that they even exist in the terms that experienced practitioners have created. I found that many of these issues were ones that I noticed about Elizabeth and many other mothers I knew saw them too. These are issues that directly affect your daily living and can offer strategies about dealing with the stress of autism that the parent and the child both face. It’s hard for me to describe what “limited social skills” looks like, but boy, her tantrums about sand—that I could see and describe!
Many children with various forms of autism experience sensory issues—either reacting too little or too much to different stimuli. And each child is highly individual about what it is that he or she reacts to. The list of behaviors can range from odd to very odd. Tina, a friend of mine, shared a few such behaviors exhibited by her child: licking glass, licking the salt shaker, leaping out of the shopping cart to touch the carpeted pillars, chewing fingernails until they bled, spinning in circles, walking in a pattern, crying when the car stopped at red lights, screeching suddenly, having a sensitivity to light, needing to have the volume at a specific level. The list goes on and on.
Did you ever take notice of The Incredibles DVD main menu? Probably not ... Ben insisted that when the colors flash red, then blue, then purple, and back to red, that we only hit start when the screen flashed purple. All hell would break loose if we did not. If we missed it, we would just wait another round of the colored backgrounds and be ready for purple. Control freak? Maybe to some, but who knows how much this affected him. His all out tantrum seemed to indicate that it was very important for the movie to start when he needed it to start. Maybe it is compensation for feeling so out of control of so many factors and gaining extreme control of a few things that helps keep him from spinning out of control.
The Sensory Processing Disorder (SPD) Foundation (2009), which specializes in research into and treatment of SPD, provides a definition:
Sensory processing (sometimes called “sensory integration” or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses ... Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”) is a condition that exists when sensory signals don’t get organized into appropriate responses......A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively. (para. 2–3)
For most people, this process is automatic. We hear someone talking to us, our brains receive that input and recognize it as a voice talking in a normal tone, and we respond appropriately. Children who have SPD, however, don’t experience such interactions in the same way. SPD affects the way their brains interpret the information that comes in; it also affects how they respond to that information with emotional, motor, and other reactions. For example, some children are overresponsive to sensation and feel as if they’re being constantly bombarded with sensory information. They may try to eliminate or minimize this perceived sensory overload by avoiding being touched or being particular about clothing. Some children are underresponsive and have an almost insatiable desire for sensory stimulation. They may seek out constant stimulation by taking part in extreme activities, playing music loudly, or moving constantly. They sometimes don’t notice pain or objects that are too hot or cold, and may need high intensity input to get involved in activities. Still others have trouble distinguishing between different types of sensory stimulation.
One of the challenges of a child with high-functioning autism is that receptivity and awareness of fine sensory details is characteristic of giftedness as well. Polish psychologist Kazimierz Dabrowski (1964) noted that gifted children often expressed what he called overexcitabilities. The five overexcitabilities he discussed were psychomotor, sensual, emotional, intellectual, and imaginational. Gifted children often are highly responsive to sensory input as well, a very related and hard to distinguish issue from sensory integration issues. Such issues can be problematic and leads to an overrepresentation of gifted children who have SPD, according to the SPD Foundation (2009).
When I teach students about SPD, or Sensory Integration Disorder (a term first used by A. Jean Ayres in 1979), I teach them that there are actually seven senses that children with SI often cannot integrate with a sense of comfort. There are the traditional five (sight, taste, touch, smell, and hearing) and two others that researchers define as vestibular and proprioceptive.
Vestibular relates to the child’s sense of balance and resides in the inner ear. According to Dr. Kern and associates from the University of Texas Southwestern Medical Center at Dallas (2007), many children on the spectrum have either an excellent or a terrible sense of balance; they tend to the extreme. I have noticed that many children with autism do not get dizzy. They have an underresponsive vestibular system. As a result, spinning tends to calm them down and they love to swing and spin for great periods of time. We went to the park two to three times a day only to swing.
Proprioceptive sense is the child’s awareness of where she is in space—information received by her body and its relationship to itself. A classic study by Drs. Masterson and Biederman in 1983 found that children with autism have to rely on their sense of being touched firmly to learn new tasks rather than their visual sense. This can translate into either clumsiness or complete body awareness through focused awareness. Many children will “toe walk” or walk on their tiptoes and have an ungainly gait in which they are stiff-legged and seem as if they are barely standing upright. They may try to squeeze themselves into spaces too small for their bodies. They may not conform their body when being hugged or held. They also can have significant issues with stamina.
Elizabeth has superior proprioceptive sense—she almost never fell as a baby and walked at 9 months. I don’t know if it’s a feature of her autism or her own abilities, but Elizabeth is a natural athlete and has always known where she is in space. Selected for competitive gymnastics training and competing with swimmers 4 years older than she is, athletics is her area of strength and social activity. However, she is limited in her stamina. Her swimming coach says that she’s a sprinter, as six laps in the pool leaves her exhausted for the rest of the day. I have very clear memories of being at a mother’s group when she was 11 months old. The others were standing around chatting and snuggling their children in their arms, and I was the only mother monitoring her child as she climbed unaided up the 6-foot slide. It was not the first time I decided that mother’s groups were just not for us.
Elizabeth loved baths; to this day, swimming is how she destresses. She finds her bliss moving through water, and it calms her down almost immediately. Even as a tiny baby, she loved the feeling of water. Because I was a dutiful mother of my first born, I did not use any bubble baths or water treatments to protect her soft baby skin—just like the baby manuals said. However, one evening when she was a little over a year old, our regular babysitter was more interested in entertaining her, and poured in bubble bath while Elizabeth was sitting in the tub. When I came home, they were both in tears. Elizabeth had had a tantrum and hysteria for well over an hour, and poor “Nanny Vene” had no idea what she had done to turn a sweet, happy splashing baby into a wailing banshee. It took some time (and other baths with soap bubbles) before we realized what was the cause. She completely flipped out at seeing rainbows in the water. Bubbles at parties? Not for my child!
Sand on her feet? Oh no ... Rubbing her back? Only if you wanted to irritate her. Touch and visual things that moved and varied made her extremely agitated. But taste? She was understimulated in the area of taste. Her first food that she did not reject was spicy taco meat. She loves salty, spicy things. She dives right into pickled beets and Indian food. She is the only 8-year-old I know who likes raw green onion bulbs—banned from me since I can’t stand the smell. She is a very adventurous eater and has been open to trying most new foods.
Synesthesia
Some children and parents report that the sensory information process is so confused that the information appears to get “crossed.” Some researchers have hypothesized that all children are born with developing sensory neurons and as they obtain experiences, the neurological linkages “harden” and blue becomes “blue,” rather than “tart.” However, some people with the genetic tendency will have crossed neurons so that they then taste “tart” in their mouths when they see something blue. Not all people with synesthesia have autism, but there does appear to be a link. In his book, Born on a Blue Day, Daniel Tammet (2006), who has autism, states that to him colors have taste, numbers have shapes, and days have colors. The information is processed in ways that do not make sense to people with typical neurological development.
It often is the sensory issues that are the first sign that something’s different ... and it’s often the one that gets noticed and remarked upon the most. As parents of our first child and adults who had limited experiences with children, we truly started noticing differences on the playground. It was watching the other children where I really began to see that perhaps Elizabeth really was different. When I read the “The Mother at the Swings” essay by Vicki Forman, I could so relate to her feelings of being alone on a crowded playground (the full essay can be found at http://www.literarymama.com/columns/specialneedsmama/archives/2006/12/the_mother_at_t.html):
The mother next to me smiles herself and says, “Boy, he really loves that, doesn’t he? I mean, kids just love to swing, don’t they?”
Yes, I think, kids do love to swing. But the reason my son loves to swing isn’t the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing ... because he has what is termed “sensory integration dysfunction” and requires enhanced “vestibular input.” Swinging gives my son the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing.
...
The mother at the swings would like for me to tell her what it’s like, how my son is different, and how he is the same.... She’d like to ask, What does his future look like? And How are you with all this?
She wants to know but she doesn’t know how to ask. And so she tells me that all kids love to swing.
It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously.... To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it’s hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can’t do. That some days my grief over my son is stronger than my love.
It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother’s curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That she will listen and sympathize when I offer my observations. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us all different. And the same. (Forman, 2006, para. 1, 2, 12–15)
With their difficulty with social cues and language, children on the spectrum often learn best visually. In fact, Temple Grandin (2006b), who has both high-functioning autism and her Ph.D., has a book called Thinking in Pictures. When a child is a visual learner, it means that one must use pictures, rather than words, to better convey concepts and ideas. Some forms of technology have capitalized on this. In one particular system, called the Picture Exchange Communication System (PECS) teachers and parents present choices and information to children using pictures rather than written words. Similarly, teachers have been using visual reminders for years for children with autism (e.g., picture schedules, lunch choices, etc.).
There can be some very interesting skills that emerge from this learning ability. Some people, such as my daughter, are very spatial and have a phenomenal ability to read maps or to understand directions. At the age of 2, we were running errands before we went to the beach. My husband, who does not have a strong sense of direction, was in the righthand turn lane coming out of the bookstore. Elizabeth started screeching, “Bee ... Bee” and frantically gesturing to the left. I turned to her, thinking she had been stung, and realized that she was trying to tell him to turn left rather than right to go to the beach. At the next intersection, I asked her which way to go and she, with a wide grin on her face, pointed in the correct direction. To this day, when my husband has to run errands, he takes Elizabeth with him.
Our house is decorated with maps. We do not live near family and so we often travel around the country to see them. The stress and anxiety of traveling with two young children with high levels of sensitivity is reduced when we can show them on the map where we are and where we’re going. It helps reduce anxiety because they can relate to and understand a map. Similarly, many parents with children on the spectrum note that their children understand graphs and charts very well. They like having data nicely organized in such a visual manner.
Puzzles are another popular item among families with autism. Children with autism love the repetitive nature of puzzles, the visual “fit” that happens, and the problem-solving process of seeing how things fit together. Sudoku, wooden puzzles, or hidden picture puzzles all are visual games attractive to children with autism. A recent game called Qwirkle is a favorite at our house because of the visual skills needed. My daughter wins often.
These are children who must watch in order to learn. They cannot be told how to do something; they have to either do it themselves or watch others first. I often think that traditional instruction is like Charlie Brown’s teacher to them—babble in a sea of noise. They tend to thrive on lists and very specific, written-down directions.
Reading can be a challenging experience for children who are very visual. Learning to read often can be very difficult because making the language connection between the visual representation of the words, the meaning of the word, and the sound of the word are three different tasks that require a great deal of mental connections. Repeated reading, where a story is read again and again, and making reading a visual task both have been found to be effective in helping these children learn to read (Bellon & Ogletree, 2000; Fossett, 2002). Yet, if children with high-functioning autism can learn to read, they often become fantastic at it. In my family, we think in visual words, not sounds. I have many words that I can use, I can write, and I can spell because I’ve seen them, but I can’t pronounce them because that’s not a visual skill.
Face-Blindness
There is one notable exception to this skill—the ability to recognize and respond to faces. Faces are certainly visual locations for information, but there is something in the emotional impact of a face that can sometimes render it almost blind to a child on the spectrum. Persons with face-blindness (or prosopagnosia) simply cannot connect faces with names or faces with particular emotions. This is not unique to autism, as many people with autism do not have it and many people with face-blindness do not have autism (however, they are issues that often occur together). In a fascinating article, Olga Bogdashina (2002) described one man’s method to recognize people by their jeans, gait, movements, and hair. He can see a pattern in hair texture and process hairlines. Interestingly, many autistic children are fascinated by people’s hair, and many do not recognize their relatives if they wear unfamiliar clothes. People with this disorder can notice small details about a face, such as hairline, scars, and other features that do not really change over time. However, the ever-changing expressions blur the understanding and ability to process their information. It is a condition that my family has to a mild degree and we have learned the fine art of having extended conversations with people when we have no idea who they are or what their name is. Recently, Elizabeth was asked to draw pictures of and describe her friends. She drew a picture of her friend Morgan (see Figure 4, Morgan is the child in the center of the top row). She completely captured Morgan’s ruffles on her pink shirt, smooth red hair with a slight flip at the ends, the intricate design on her jeans, and even the untied shoes Morgan is famous for. But, she did not draw Morgan’s face. Just a circle and dots for eyes. No face and no color for eyes. To Elizabeth, Morgan’s face wasn’t a feature that was important.
Often, these various learning capabilities create a very uneven learning pattern. Children with high-functioning autism may excel at subjects and instruction that focus on rote memory, analysis, and visual awareness, and do poorly in areas that are highly language or socially based. They may excel at drama, but perform poorly in literature. Much of their learning will be highly dependent upon the content, their level of interest, and the method of instruction. But they may look very much like other twice-exceptional children who have significant strengths in some academic areas and very poor skills in others.
Such diverse skills found within a child with high-functioning autism can translate to test scores and cognitive abilities that are highly discrepant. For example, my daughter has a visual processing ability that is in the 95th percentile, but an auditory processing speed that is in the 9th percentile. Such wide fluctuations of scores can serve to flatten a child’s overall ability or achievement scores. For example, a very bright child I worked with had an overall IQ score of 126, but a verbal score of 112 and a performance score of 135. Within each of these larger domains, he had equally wildly fluctuating subtest scores. He did not qualify for gifted services in that particular state because his overall score was not high enough, nor did he qualify for special education services because his scores were not low enough. However, many of his individual scores indicated significant strengths and some debilitating challenges. Overall, his achievement was moderate and he made grade-level B’s with an occasional A.
Interestingly, according to Dawn Huber-Kinslow (2008) from The University of Iowa, prevalence rates of autism are higher among gifted populations and many gifted children are misdiagnosed or overdiagnosed with autism and other labels, because of, or exacerbated by their giftedness. I would recommend the book Misdiagnosis and Dual Diagnoses of Gifted Children and Adults by Dr. Jim Webb and others (2005) as an excellent resource for looking at children with high-functioning autism and other labels.
There are few significant physical features of autism. Unlike Down syndrome, where children have very distinctive facial features and physical issues, children with autism have wide-ranging lists of physical characteristics. According to the National Human Genome Research Institute (2009), about 30% of children with autism demonstrate mild physical differences, and those who do tend to reflect slightly altered features and small head circumference.
Other issues are not fully supported by hard science, but have significant amounts of anecdotal data. As in all aspects of autism, you will need to do further research because the arguments for and against various causations and treatments tend to be very loud and controversial. Many of the physical issues of autism tend to focus on either digestive and autoimmune issues, or neurological issues such as epilepsy, seizures, or neurotransmitters.
Digestive Issues
Many children with autism can experience a variety of digestive problems, including constipation, diarrhea, acid reflux, or increased severity of autistic symptoms when eating certain foods. It is clear that children with autism often are highly selective or picky eaters. They will have lowered levels of necessary vitamins and minerals because of their restricted diets. In fact, selective eating used to be a criterion for diagnosis of autism until recently. Some researchers have reportedly found heightened levels of yeast, free radicals, auto-antibodies, or heavy metals in the blood. Other reports indicate lower levels of sulfates. These problems can result in irritable bowel syndrome, colitis, or allergies to milk, wheat, or sugar. There are some suggestions that the lack of necessary bacteria in the digestive tract can trigger an autoimmune reaction to environmental factors in some children that then becomes a biological basis for autistic behaviors. Some physical characteristics of digestive allergies and imbalances include skin dryness, dark circles, eczema, and sensitivity to light. Several projects undertaken by the University of California, Davis’ M.I.N.D. Institute (n.d.) currently are examining the relationships between genetic structures, environmental toxins and triggers, and resultant types of autism. Truly, autism research is on the cutting edge of technology.
Neurological
There is a strong link between autism and epilepsy or seizures. Some estimates suggest that up to 30% of children with autism also have regular seizures. Most children with autism do not have grand mal seizures, but rather “silent,” or petit mal seizures that may simply look like inattention. Daniel Tammet (2006) noted that his synesthesia, or mixing up of sensory information, began when he started having severe epilepsy seizures. Like autism, epilepsy is essentially a genetic issue, but it is a combination of multiple genes that appear to be triggered by environmental events.
There also is an interesting linkage with elevated serotonin levels in the blood of people with autism. Serotonin is strongly linked with depression, alcoholism, and anxiety, and researchers at Vanderbilt University Medical Center (Tranguch & Marino, 2008) and other medical communities are examining the role of specific proteins called serotonin transporters (SERT) that regulate the amount of serotonin available to the brain. There appears to be an issue with the serotonin transporters that regulate the serotonin created in the gut, which leads nicely back to the digestive issues often reported in children with autism. However, medications that work on the serotonin transporters don’t seem to work to reduce the repetitive behaviors of children with autism.
The medical, physical, and neurological complexities of autism are fascinating to study, but they are a tangled web of confusing and often contradictory information. Much of the research is being conducted currently, and I do not feel entirely comfortable as a layperson describing the intricacies of various proteins and their interactions. I encourage you to stay tuned as our knowledge base continues to grow rapidly in this area.
I do know that anxiety, depression, and alcoholism run rampant in both my family and that of my husband. I do know that we read the checklists of autism when we were first looking for help, and read of characteristics that we had learned to live with and even celebrate, within ourselves and family members. I do know that we often find ourselves staring into an abyss of confusion, guilt, and worry. And I also know that we love our children more than I can comprehend, and we celebrate the special things that make them who they are, that go beyond physical, social, and language issues. My children are perfect. I just needed to know the best ways to help them become the best that they can be.
The problem with checklists and descriptors is that they still don’t capture the wonderful, funny essence of any child, much less mine. I read so many checklists and realized that Elizabeth fit many of them. I kept holding their descriptions up against Elizabeth, much like shopping for clothes—Does this label fit her? How about this one? Untangling autism from the essential “Elizabeth-ness” sometimes can be problematic. Does she have communication problems, or is she just that way? Does she have significant sensitivities, or is she just a member of our family (who all hate loud noises and like nuts in our ice cream because of the texture)? And what about her strengths? Were these autism at its best or a version of giftedness? She has a very strong spatial ability, phenomenal abilities with puzzles, and unbelievable athletic skills—how could such strengths be characteristic of a terrible label such as autism? And all mothers deal with tantrums; my mother was full of stories of my crankiness and my severe inability to fall asleep and I turned out fine ... didn’t I?
And did she really fit the label? Yes, she had some characteristics, but not all. Was I being paranoid? She was a girl—girls weren’t supposed to have autism. Here was a child who loved kisses, smiled at me, and made funny faces at herself in the mirror. She reminded me of the nursery rhyme:
There was a little girl
Who had a little curl
Right in the middle of her forehead
And when she was good
She was very, very good
And when she was bad, she was horrid.
And I didn’t want a label; a label might provide my child with that very future that I was trying to avoid—the ones that so many other mothers on blogs and bulletin boards were living full of pain and hope for their beloved child, and who do not measure their progress against other children, but only against themselves. Mothers who celebrated a child’s first sentence at age 7. Families who could not travel on airplanes because of the extreme meltdowns. Was I one of those mothers? Or was I a mother who was simply unprepared for motherhood? But we did need help. And so finally we went looking ...
