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Home > Consumer Focus Archive > Autism Spectrum Disorders
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Autism Spectrum Disorders
 Chances are you know of an autistic child, or a family adapting to an autism diagnosis. Since the mid-1990s, a groundswell of parent advocacy groups, personal reports from family members, and the autistic themselves have spoken out to put a public face on what has been a baffling condition. President Bush signed the Combating Autism Act (CAA) in December, 2006. Designed to fund biomedical research, screening, public awareness and early identification programs through 2011, it is one of the most comprehensive single-disease legislation packages ever enacted. What has driven autism to become headline news?
Posted: April 1, 2008 |
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 What is Autism?
Scientists today use the term “Autism Spectrum Disorders” (ASDs) to describe different forms of autism. ASDs are harmful changes that take place in the brain as it grows and develops. Now called “the fastest growing developmental disability in the U.S.,” each year autism disrupts families and stops hundreds of thousands of children from reaching their full potential.
The Center for Disease Control (CDC) reports that about 560,000 or one in every 150 children in the U.S. currently has some form of autism. Boys are affected four times more often than girls. The three main symptoms that must be present for a diagnosis of classic autism are:
- impaired social interaction
- communication problems
- repetitive routines or behaviors
As early as 8 months, but usually between the first and second birthdays, pediatricians can recognize ASD symptoms in children who are verbal, toilet trained, and have shown normal development at previous check-ups. Though they have no defining physical features, they may suddenly start avoiding eye contact, resist being held or cuddled, or show strange or new detached behavior. Overall, symptoms can range from very mild to severe. A few people with autism may possess unusual skills in one area that exist side-by-side with weaknesses in others. Some ASD patients demonstrate extreme, debilitating behaviors, such as continually rocking, or hitting their heads against a wall. Some people with autism close off and shut down, while others appear locked into repetitive behaviors and rigid patterns. About 40% of affected children do not speak at all, and mental retardation occurs in about 25%. In addition to classic autism, the ASD spectrum includes:
- Asperger syndrome
- Rett syndrome
- pervasive developmental disorder not otherwise specified, (PDD-NOS)
- childhood disintegrative disorder (CDD)
Asperger Syndrome
In Asperger syndrome, a less severe form of autism that typically appears in boys, a person may have strong language skills and function at a high level, with speech and intelligence intact. As late as middle school, a young man may develop social skill impairments that can interfere with his acceptance into the school culture or ability to make friends. Behavioral therapy in conjunction with medication can reduce social awkwardness and anxiety. With help, Asperger’s patients can lead productive and independent lives, and be fully capable of holding down a job.
Rett Syndrome
In 2001, a NICHD researcher identified the gene responsible for Rett syndrome (RTT), which occurs only in girls. Over a period of a few months, a seemingly normal infant girl would lose her ability to walk and develop symptoms of severe mental retardation. After years of exploration, NIH-funded researchers at Baylor University discovered that girls with RTT have a defective gene on one of their two X chromosomes. Since the affected girls have some normally functioning copies of the gene, their symptoms are not immediately apparent. But between about 6 and 18 months, when the function of the one normal gene is insufficient to meet the growing child's needs, the girls tragically begin to exhibit the symptoms of Rett Syndrome, for which there is no known cure. RTT is also known as "Motormental retardation", "Disintegrative psychosis", and "Heller syndrome".
Pervasive Developmental Disorders Not Otherwise Specified (PDD-NOS, or PDD) and Childhood Disintegrative Disorder
Generally, an individual has Pervasive Developmental Disorders Not Otherwise Specified (PDD-NOS, or PDD) if he or she has some autistic behaviors, but does not meet the full criteria for having ASD. Children with Childhood Disintegrative Disorder are hard to tell apart from autistic children once the “autism-like” behaviors are present. The key to distinguishing the two is to have parents recall the “pattern of onset” or the way the child behaved when the symptoms first appeared. Scientists think that neurological abnormalities may be links to Childhood Disintegrative Disorder, another PDD that appears in only about one in 100,000 three and 4-year-olds who have developed normally to age 2, but then regress severely in body function, intellectual, social, and language skills. Sadly, outcomes for pervasive developmental and disintegrative disorders are generally worse than for other autistic conditions.
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 The “Red Flags” for Autism
Parents celebrate a child’s achievements, such as grasping at about 2 months, visual depth perception at 4 months, and speech from 8 to 12 months. These are the milestones doctors and parents look for to signal normal brain development. When development hits a snag in the circuitry of the brain it’s often the observant parent who first realizes “Something isn’t right.”
Ruling out serious problems
- Keep a dated log on each child, including vaccinations. Note the child’s normal schedule, and plan to discuss any unusual behaviors with the pediatrician.
- When making the next well-baby/child appointment, request a little extra time.
- Take the journal with you to the doctor; note answers to your queries. You know your
child the best. If, “He’ll grow out of it” won’t explain the behavior you question, be prepared to
seek a second opinion, or ask for a developmental screening.
- Be considerate, but within reason, don’t let office staff rush you out the door.
- If doctor or staff dismiss your request for a more thorough exam, restate your concern, and
consider changing physicians.
What if you suspect autism in your young child?
Doctors and educators all agree that an early diagnosis can result in a more positive outcome. Take your 8-month-old infant through preschool-age son or daughter to the doctor for a developmental exam right away if he or she:
- does not turn head when spoken to, or respond to name;
- does not point or wave “bye-bye;”
- had begun talking, but has lost the ability;
- does not know how to play with other children, prefers to play alone;
- “tunes out,” seems to be deaf;
- has unusual sensory sensitivities to sound, to lights, or rough surfaces;
- behaves as if in “own world;”
- becomes fixated on furniture arrangement, or on hard objects, not soft toys or blankets;
- becomes rigid about dressing in a particular order, or schedules;
- develops unusually frequent or prolonged inconsolable temper tantrums.
Is it preadolescence, or could it be autism? Helping older children when behaviors change
Behavior changes in middle school should cause concern for parents and teachers, and may warrant further investigation. Don’t think it’s an alarmist reaction to take a child of any age to the doctor, and on to an ASD specialist, particularly:
- if he of she loses ANY language, or ANY social skills at ANY age;
- when a good student’s grades begin to slip, even in middle school;
- if your personable pre-teen suddenly avoids eye contact, and loses the good interpersonal skills he or she has always had
Age isn’t the issue. No matter what age your child is, if the pediatrician thinks things are fine and you don’t, persist and request a consult with an ASD specialist, such as a developmental pediatrician or a pediatric neurologist, both of whom have special training to make an evaluation, and recommend treatment.
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Finding Help and Treatment Options
 The Autism Research Network, sponsored by NIH, has links to the 8 nationwide centers in the STAART Network, where you can find detailed information on autism evaluation and treatment, as well as connections to each of the ten Collaborative Programs of Excellence in Autism (CPEA) at major U.S. universities. You can also look online for resources by state. An ideal treatment plan coordinates therapies and interventions that target the core symptoms of autism across the spectrum. They vary depending upon the intensity of the child’s or patient’s problems in the three characteristic areas: impaired social interaction, problems with verbal and nonverbal communication, and obsessive or repetitive routines and interests.
Behavioral therapy and other interventions
Considered among the most effective treatments, behavior management therapy reinforces acceptable, and reduces unwanted behaviors. Other therapeutic work can help develop multiple skills, particularly when started as early as possible. These may include:
- speech and language therapy to improve communication and interactions with others
- occupational therapy to help adjust tasks to a person’s needs and abilities, and
- physical therapy to build motor control; to improve posture and balance using special exercises and activities.
Educational and/or school-based options
Under the law, public schools must provide free, appropriate education from ages 3-21, or through high school whichever comes first, using an Individualized Education Plan (IEP) to guide the child’s school experiences. Parents and school specialists meet to adapt the IEP to the child’s needs and interests.
Medication options to reduce symptoms
Parents should use caution before adopting any therapies and treatments often advertised for autistic children not supported by research. Stick with prescribed medications such as:
- Antidepressants to reduce anxiety, depression, or obsessive-compulsive disorder;
- Stimulants to decrease impulsivity and hyperactivity;
- Anti-psychotics to treat severe behavioral problems.
There is no cure for autism, but therapies, medications, and school-based behavioral interventions can make patients and their families more comfortable. For the autistic, appropriate treatment, begun early, can maximize learning potential, adjustment, and enjoyment of life.
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