What Does It Mean to be Autistic

Autism is a brain disorder that too often results in a lifetime of impaired thinking, feeling, and social functioning — our most uniquely human attributes. Autism typically affects a person’s ability to communicate, form relationships with others, and respond appropriately to the external world. The disorder becomes apparent in children generally by the age of 3.

Autism (sometimes referred to as “classical autism”) is the most common condition in a group of developmental disorders known as the autism spectrum disorders.

Other autism spectrum disorders include:

• Childhood disintegrative disorder
• Asperger syndrome
• Rett syndrome
• Pervasive developmental disorder not otherwise specified (usually called PDD-NOS).

Experts estimate that three to six children out of every 1,000 will become autistic. Males are four times more likely to be autistic than females. Autistic girls with tend to have more severe symptoms and greater cognitive impairment.

Common Autistic Behaviors

Autism is characterized by three distinctive behaviors. Autistic children:

• Display problems with verbal and nonverbal communication
• Have difficulties with social interaction
• Exhibit repetitive behaviors or narrow, obsessive interests.

Some autistic people can function at a relatively high level, with speech and intelligence intact. Others have serious cognitive impairments and language delays, and some never speak.

In addition, autistic individuals may seem closed off and shut down, or locked into repetitive behaviors and rigid patterns of thinking. An autistic infant may avoid eye contact, seem deaf, and abruptly stop developing language. The child may act as if unaware of the coming and going of others, or physically attack and injure others without provocation. Autistic infants often remain fixated on a single item or activity, rock or flap their hands, seem insensitive to burns and bruises, and may even mutilate themselves.

Misinformation about autism is very common. Claims of a cure for autism are constantly presented to families of autistic individuals. There are various treatment models found within both the educational and clinical settings. Yet, there is only one treatment approach that has prevailed over time and is effective for all persons, autistic or not. That treatment model is an educational program that is suitable to a student’s developmental level of performance. For adults, that treatment model refers to a vocational program that is suitable to the individual’s developmental level of functioning.

Under the Individuals with Disabilities Educational Act (IDEA) Act of 1990, students with a handicap are guaranteed an “appropriate education” in the Least Restrictive Environment (LRE), which is generally considered to be as normal an educational setting as possible. As a result of this legislation, autistic children have generally been placed in a mainstreamed classroom and pulled out for whatever supplementary services were needed. Depending on the child’s needs, he or she could be placed up to 100% of the school day in a mainstreamed or a special education setting or any combination of the two.

There is an increasing trend, however, among the advocates for autistic children, to segregate these children into small, highly structured and controlled academic settings that are almost free from auditory and visual stimulation. All instruction is broken down into manageable segments. Information is presented in tiny units and the child’s response is immediately sought. A classic stimulus-response approach is used to maximize learning. Each unit of information is mastered before another is presented. A fundamental behavior such as putting hands on the tabletop, for example, must be mastered before the child is required to perform any other tasks, or before more information is presented. The long-term effects of this type of treatment as well as the ability of the child to transfer this to a broader context continue to be evaluated.

Autistic individuals must be taught how to communicate and interact with others. This is not a simple task, and it involves the entire family as well as other professionals. Parents of an autistic child or adult must continually educate themselves about new treatments and keep an open mind. Some treatments may be appropriate for some individuals but not for others. Many treatments have yet to be scientifically proven. Treatment decisions should always be made individually after a thorough assessment and based on what is suitable for that child and his or her family.

It is important to remember, despite some recent denials, that autism is virtually a lifelong condition. Treatment will change as the individual develops. Families must beware of treatment programs that give false hope of a cure. Acceptance of the condition in a family member is a very critical, foundational component of any treatment program and is understandably quite difficult.

Several medications have been tried or are under current scrutiny for the treatment of autism. No medication has consistently proven to be of benefit in closely controlled clinical trials. In the past, a piece on a television news show prompted a great deal of interest in the hormone secretin as a treatment for autism. An autistic child with chronic gastrointestinal complaints showed dramatic improvement following some routine testing performed by a gastroenterologist during which a small dose of secretin was administered. The family and their physicians felt that the secretin may have resulted in the improvement in the symptoms of autism. Many physicians began prescribing secretin, which can be costly for their autistic patients. However, studies published appear to completely refute the claim that secretin treatment benefits autistic patients. This example underscores the importance of good clinical trials in determining whether a drug will help patients with autism.

Autism At A Glance

• Autism is characterized by impaired development in social interaction, communication, and behavior.
• The degree of autism varies from mild to severe.
• Severely afflicted patients can appear to have a profound intellectual disability.
• The cause of autism is unknown.
• The optimal treatment of autism involves an educational or vocational program that is suited to the developmental level of the child or adult, respectively.

Hours after a baby is born, her parents are told it’s best that she receive her first shot before she leaves the hospital. And that’s just the beginning. By the child’s sixth birthday, she’ll have had at least 35 vaccinations—if she goes by government recommendations. Meanwhile, during those six years, her parents are likely to see hundreds of media reports and online message-board debates about which vaccines are necessary or even safe. It’s confusing, to say the least.

To sort through the onslaught of information and misinformation about childhood immunizations, we asked Austin, Texas-based pediatrician Ari Brown, coauthor of “Baby 411: Clear Answers and Smart Advice for your Baby’s First Year,” to debunk some of the most common vaccination myths.

Myth 1: It’s not necessary to vaccinate kids against diseases that have been largely eradicated in the United States.
Reality: Although some diseases like polio and diphtheria aren’t often seen in America (in large part because of the success of the vaccination efforts), they can be quite common in other parts of the world. The Centers for Disease Control and Prevention warns that travelers can unknowingly bring these diseases into the United States, and if we were not protected by vaccinations, these diseases could quickly spread throughout the population. At the same time, the relatively few cases currently in the U.S. could very quickly become tens or hundreds of thousands of cases without the protection we get from vaccines. Brown warns that these diseases haven’t disappeared, “they are merely smoldering under the surface.”

Most parents do follow government recommendations: U.S. national immunization rates are high, ranging from 85 percent to 93 percent, depending on the vaccine, according to the CDC. But according to a 2006 study in the Journal of the American Medical Association, the 20 states that allow personal-belief opt outs in addition to religious exemptions saw exemptions grow by 61 percent, to 2.54 percent between 1991 and 2004.

Brown is concerned that parents who opt out or stagger the vaccine schedule can end up having to deal with confusing follow-up care, which could produce an increase in disease outbreaks like last summer’s measles epidemic. A 2008 study in the American Journal of Epidemiology reported that when there are more exemptions, children are at an increased risk of contracting and transmitting vaccine-preventable diseases.

Myth 2: Mercury is still in kids’ vaccines.
Reality: At the center of this issue is a preservative called thimerosal compound containing mercury) that once was a common component in many vaccines because it allowed manufacturers to make drugs more cheaply and in multidose formulations. But public concern, new innovations and FDA recommendations led to its removal from almost all children’s vaccines manufactured after 2001. Since flu vaccines are not just for children, manufacturers still put thimerosal in some flu-shot formulations. You can ask your pediatrician for the thimerosal-free version, says Brown.

If your child does not have asthma and is at least 2 years old, Brown recommends the FluMist nasal-spray vaccination over the flu shot. “It seems to have better immune protection and it could help your child avoid another shot,” she says. (Caveat: the spray does contain a live version of the virus, which can result in a slight increase in flulike symptoms).

Myth 3: Childhood vaccines cause autism.
Reality: There is no scientific evidence that this link exists. Groups of experts, including the American Academy of Pediatrics and the Institute of Medicine (IOM), agree that vaccines are not responsible for the growing number of children now recognized to have autism.

Earlier this month, the law supported scientists’ conclusions in this arena with three rulings from a section of the U.S. Court of Federal Claims, which stated that vaccines were not the likely cause of autism in three unrelated children. The U.S. Department of Health and Human Services said in an online statement following the ruling, “The medical and scientific communities have carefully and thoroughly reviewed the evidence concerning the vaccine-autism theory and have found no association between vaccines and autism.” Noting the volume of scientific evidence disproving this link, an executive member of one of the nation’s foremost autism advocacy groups, Autism Speaks, recently stepped down from her position because she disagrees with the group’s continued position that there is a connection between the vaccines and autism.

Myth 4: Getting too many vaccines can overwhelm the immune system and cause adverse reactions or even serious illness.
Reality: Children’s immune systems are capable of combating far more antigens (weak or killed viruses) than they encounter via immunizations. In fact, the jury is still out on if there’s an actual limit on how many the body can handle—though one study puts the number around a theoretical 10,000 vaccines in one day.(Visit the American Academy of Pediatrics’ site or the Network for Immunization Information for more information)

Currently, “There is even less of a burden on the immune system [via vaccines] today than 40 years ago,” says Edgar Marcuse, a professor of pediatrics at the University of Washington who works on immunization policy and vaccines. He points to the whooping-cough vaccine as an example where there are far fewer antigens in the shot than the earlier version administered decades ago. Brown says she supports following the recommended schedule for vaccinations, which outlines getting as many as five shots in one day at a couple check-ups.

The CDC reports that most vaccine adverse events are minor and temporary, such as a sore arm or mild fever and “so few deaths can plausibly be attributed to vaccines that it is hard to assess the risk statistically.” Of all deaths reported to the Health and Human Services’ Vaccine Adverse Events Reporting site between 1990 and 1992, only one is believed to be even possibly associated with a vaccine. The Vaccine Safety Datalink Project, an initiative of the CDC and eight health-care organizations, looks for patterns in these reports and determines if a vaccine is causing a side effect or if symptoms are largely coincidental.

If you have concerns about following the recommended vaccination, schedules don’t wait until a check-up. Set up a consultation appointment with your pediatrician, or even outline a strategy for care with your doctor during your pregnancy.

Myth 5: It’s better to let my kid get chickenpox “naturally.”
Reality: Before the chickenpox vaccine was licensed in 1995, parents sometimes brought their child to a party or playground hoping that their child might brush up against a pox-laden kid to get their dose of chickenpox over since cases were usually less severe for children than adults. But pediatricians say severe complications are possible with chickenpox—including bacterial infections that could result in a child’s hospitalization or death.

Now that there’s a vaccine for chickenpox, more than 45 states require the shots (unless your child already had the chicken pox or can prove natural immunity). Two shots usually guarantees your child a way out of being bedecked in calamine lotion for two feverish weeks, but some individuals do still come down with a milder form of the pox. Most pediatricians recommend getting the shot.

Myth 6: The flu shot causes the flu.
Reality: The flu shot does not contain a live virus, so your child can’t get the flu from this shot. But, after the shot, it’s not uncommon to feel a bit achy while the immune system mounts its response. Remember that for two weeks following the shot, your child can still get the flu, so be sure to help your child avoid that feverish kid next door.

The current Diagnosis and Statistical Manual of Mental Disorders-Fourth Edition, Treatment Revision (DSM-IV-TR) identifies three features that are associated with autism:

• impairment in social interaction,
• communication, and
• Behavior.

Impairment in social interaction

First, patients with autism fail to develop normal personal interactions in virtually every setting. This means that affected persons fail to form the normal social contacts that are such an important part of human development. This impairment may be so severe that it even affects the bonding between a mother and an infant. It is important to note that, contrary to popular belief, many, if not most, autistic persons are capable of showing affection and do demonstrate affection and do bond with their mothers or other caregivers. However, the ways in which autistic individuals demonstrate affection and bonding may differ greatly from the ways in which others do so. Their limited socialization may erroneously lead parents and pediatricians away from considering the diagnosis of autism. As the child develops, interaction with others continues to be abnormal. Affected behaviors can include eye contact, facial expressions, and body postures. There is usually an inability to develop normal peer and sibling relationships and the child often seems isolated. There may be little or no joy or interest in normal age-appropriate activities. Affected children or adults do not seek out peers for play or other social interactions. In severe cases, they may not even be aware of the presence of other individuals.

Communication

Communication is usually severely impaired in autistic persons. What the individual understands (receptive language) as well as what is actually spoken by the individual (expressive language) is significantly delayed or nonexistent. Deficits in language comprehension include the inability to understand simple directions, questions, or commands. There may be an absence of dramatic or pretend play and these children may not be able to engage in simple age-appropriate childhood games such as Simon Says or Hide-and-Go-Seek. Adults may continue to engage in playing with games that are for young children.

Autistic individuals who do speak may be unable to initiate or participate in a two-way conversation (reciprocal). Frequently the way in which an autistic person speaks is perceived as unusual. Their speech may seem to lack the normal emotion and sound flat or monotonous. The sentences are often very immature: “want water” instead of “I want some water please.” Those with autism often repeat words or phrases that are spoken to them. For example, you might say “look at the airplane!” and the child or adult may respond “at airplane,” without any knowledge of what was said. This repetition is known as echolalia. Memorization and recitation of songs, stories, commercials, or even entire scripts is not uncommon. While many feel this is a sign of intelligence, the autistic person usually does not appear to understand any of the content in his or her speech.

Autistic persons often exhibit a variety of repetitive, abnormal behaviors. There may also be a hypersensitivity to sensory input through vision, hearing, or touch (tactile). As a result, there may be an extreme intolerance to loud noises or crowds, visual stimulation, or things that are felt. Birthday parties and other celebrations can be disastrous for some of these individuals. Tags on clothing may be perceived as painful. Sticky fingers, playing with modeling clay, eating birthday cake or other foods, or walking barefoot across the grass can be unbearable. On the other hand, there may be an underdeveloped (hyposensitivity) response to the same type of stimulation. This individual may use abnormal means to experience visual, auditory, or tactile (touch) input. This person may head bang, scratch until blood is drawn, scream instead of speaking in a normal tone, or bring everything into close visual range. He or she might also touch an object, image or other people thoroughly just to experience the sensory input.

Autistic children and adults are often tied to routine and many everyday tasks may be ritualistic. Something as simple as a bath may only be accomplished after the precise amount of water is in the tub, the temperature is exact, the same soap is in its assigned spot and even the same towel is in the same place. Any break in the routine can provoke a severe reaction in the individual and place a tremendous strain on the adult trying to work with them.

There may also be non-purposeful repetition of actions or behaviors. Persistent rocking, teeth grinding, hair or finger twirling, hand flapping and walking on tiptoe are not uncommon. Frequently, there is a preoccupation with a very limited interest or a specific plaything. A child or adult may continually play with only one type of toy. The child may line up all the dolls or cars and the adult line up their clothes or toiletries, for example, and repeatedly and systematically perform the same action on each one. Any attempt to disrupt the person may result in extreme reactions on the part of the autistic individual, including tantrums or direct physical attack. Objects that spin, open and close, or perform some other action can hold an extreme fascination. If left alone, an autistic person may sit for hours turning off and on a light switch, twirling a spinning toy, or stacking nesting objects. Some individuals can also have an inappropriate bonding to specific objects and become hysterical without that piece of string, paper clip, or wad of paper.