Autism Spectrum Disorders 101
Robin*, mother of 6-year-old Jake*, felt almost as helpless as her son. "We went several years without a true diagnosis. It was very frustrating. He's really a very smart kid—he's just so trapped in his body."
Jake had been diagnosed as having mild mental retardation two years earlier, but the full extent of the problems he was experiencing was not captured until he was finally, and correctly, diagnosed with autism. His school keyed in on it first and it was later confirmed by his physician. While it is common for a child with autism to have developmental delays, autism and related disorders have additional characteristics that may require different approaches to early intervention.
When a child struggles with an unknown villain, parents will do anything to come to the rescue. And the sooner the villain is named, the greater the chance for help.
Katherine A. Loveland, PhD, professor of psychiatry and behavioral sciences at The University of Texas Medical School at Houston, explains that children are diagnosed at different ages, depending on when the family seeks professional help. "It's common now for children to be diagnosed in the second or third year of life. It's still uncommon for a child to be diagnosed in the first year, but with better methods of screening and greater awareness about Autism Spectrum Disorders (ASD) very early diagnoses can be made in some cases.”
ASD is four to five times more prevalent in boys, and according to the Centers for Disease Control and Prevention (CDC) findings, .6 to1 percent of children are estimated to have an Autism Spectrum Disorder. Because ASD's influences on intelligence, communication, speech and ability to relate to people can vary so greatly, it is almost impossible to create a "typical" profile of a child with ASD. This wide variation is the reason we now refer to ASD as a “spectrum” rather than just a categorical disorder.
Fact from fiction
Misconceptions abound about ASD. The one that has ignited a firestorm in the scientific and parent advocacy communities is the theory of one British scientist that childhood vaccines contribute to or cause ASD. On Tuesday, Feb.2, 2010, the prestigious medical journal The Lancet issued a repudiation of Dr. Andrew Wakefied’s 1998 published research and research methods, which cited vaccines as the likely culprit behind the development of autism in children.
“A gathering storm of evidence over the years did not support the findings that the Lancet first reported in 1998,” Loveland says, and that The Lancet’s recent retraction is something that “the scientific community believes is long overdue.”
Studies, both national and international by the CDC, and a massive 2004 review of all international studies (conducted by the Institute of Medicine) could not support Wakefield’s theory. Scientists, developmental psychologists and pediatricians hope that this puts an end to parent-based movements to withhold life-saving vaccines from their children out of fear of developing ASD.
Then there is the “Rain Man” misconception about ASD. Those of us who have no experience with ASD might assume that Dustin Hoffman's character in the Oscar- winning performance represents the typical adult with ASD. Loveland clarifies his portrayal as a composite of “many faces and facets” of the disorder. Although the character's hyper-anxiety at changes in his routines was realistic, having special savant ability in such areas as music or mathematics occurs in about 1 in 2,000 cases.
People mistakenly think that children with ASD are incapable of attachment or of expressing love. "I think many families would tell you that their children with ASD do love and express it in their own ways." Loveland says. Most of the time children with ASD do become attached to family members or caregivers they see regularly, she says.
There’s also the assumption that people with ASD are unable to lead independent lives. Developmental professionals now know that the spectrum includes people who are only mildly affected: some succeed in school, hold jobs, live independently, get married or have other long-term relationships.
Wider availability of early interventions and improved methods of diagnosis have allowed more children to attain a better outcome. “Today’s child with an Autism Spectrum Disorder has a much improved outlook for the future, compared to children in past generations,” Loveland says. “For example, we used to believe that most children with ASD had little or no language skills or abilities. Now we know that many of them can be more verbal than we previously thought.”
You can be a little bit autistic
Loveland emphasizes there are degrees of ASD, and IQ and language skills vary with each child. For instance, Asperger’s Syndrome (often nicknamed “Autistic Lite”) exemplifies the varying degrees of ASD. While there is still controversy about the relationship of Asperger Syndrome to autism, most clinicians agree that it is part of the autism spectrum. People with Asperger’s can be highly verbal, bright and independent, but have difficulty with relationships, attachments and social behavior. Because of Asperger’s variations in expression, each child requires a unique course of treatment and prescription medications. Its very uniqueness is what makes definitive diagnosis and treatment so challenging.
Diagnosis: the ‘Gold Standard’
The two most highly regarded assessment tools used by trained personnel in interpreting data collected from both parent and child are the Autism Diagnostic Interview and the Autism Diagnostic Observation Schedule. "The reason these are now considered the gold standard is that they capture very well the clinical criteria that we use to diagnose autistic spectrum disorders," Loveland says.
Robin had noticed several signs of possible ASD in Jake, including self-injurious behavior and the spinning of objects. Loveland says that these are only two of several signs that a child might exhibit.”
Jake's and his parents' journey toward a correct diagnosis meant countless trips to various specialists, along with several medical procedures during the first four years of Jake's life.
ASD therapy is not always covered by insurance. While promising private programs exist, they may cost thousands of dollars a month. Loveland points out that some parents are so desperate for a solution that they may be susceptible to the boasts of poorly tested programs, losing not only money but also valuable learning time for the child.
A first step in therapy may be applied behavior analysis (ABA ). The ABA approach breaks down learning into small steps and provides rewards.
"ABA has the child learning new behaviors and controlling interfering behaviors," Loveland explains. "It's often a good way to get a child who has very little in the way of communication skills or social awareness to orient to people, learn some basic skills, and begin to have a means of communicating."
ABA requires a professional, and often parents must take an active role to support this training when the therapist is not around. Although it is a useful tool, it's not a complete solution, she emphasizes.
Robin says that when Jake was officially diagnosed with ASD, expanded services were available through public school programs that provided services not offered to children with mental retardation/developmental delay. The most valuable service was "parent in-home training" with a behavior specialist sponsored by the school. This assists Robin with behavior issues that exist at home.
What parents don't need
Robin says that family members and strangers don't generally understand ASD, which can make for stressful social situations. Strangers in the grocery store may give that disapproving look; other parents at the park may huddle and point. Robin says, "The pain you feel inside is overwhelming at times."
Tension can multiply when the family has other children. Loveland says, "Whenever there's a child in the family who has special needs, he or she is going to require a lot of time, attention and resources, which can be hard for the non-affected sibling."
Robin also sees difficulty in balancing expectations, especially when the older child has the disability. "I tend to accept certain behaviors from Jake that I would not typically accept from his 3-year-old sister. I request a lot of understanding from his little sister, which is not fair to her."
Parents least need the guilt trip they inflict on themselves, wondering what they did “wrong.” Loveland says that although there is almost certainly a genetic component to this developmental disorder, the causes of ASD seem to be complex and to vary among individuals.
Be an advocate
For Robin, her role doesn't stop at in-home reinforcement of behavior and juggling time for work, her husband and her daughter. She plays an active part in her child's learning programs, knowing which government-supported programs are provided and watching Jake's progress closely.
She requests meetings with the education/life skills team when she sees that the programs outlined by the public education system are not meeting Jake's needs. In some states, parents have even sued to have programs provided for children with ASD.
Loveland suggests that parents of autistic children also lobby for better programs and more financial support for research.
"Some of the best minds are working on ASD at all levels, from the biochemical to the genetic, through applied intervention. We are learning more every day, and there are centers like ours and others at UT that are engaged in researching ways to understand, treat and perhaps even prevent the development of ASD," Loveland says.
For more information on ASD services and research at UT Health Science Center at Houston, go to
Medically-Based Autism Clinic—The Children’s Learning Institute: Dr. Richard Frye: For appointments, please call 832-325-7155
The Department of Psychiatry and Behavioral Sciences: Dr. Katherine Loveland
The Department of Psychiatry and Behavioral Sciences: Dr. Deborah Pearson
The Children’s Learning Institute: Dr. Pauline Filipek
*Names have been changed to protect privacy