April is Autism Awareness Month. Why should we all be aware? Because autism is now thought to affect 1 in 68 children in the United States. More than 3.5 million Americans are diagnosed with this disorder. Early diagnosis is crucial if a child with autism is to be all he or she can be.
Every parent of young children should know what Autism Spectrum Disorder (ASD) is and what to look for.
What is Autism?
According to the American Psychological Association guidelines, people with autism usually have difficulties with communication with others. They may not respond appropriately in conversations, lacking an understanding of the give and take others expect. They have difficulty reading nonverbal cues and often have difficulty looking at others while they speak. Many children have difficulty making friends with kids their own age, preferring the company of those who are much older or younger. In addition, they are very dependent on routines and structure to feel safe. They may react with intense distress to change.
Many have over- or underactive senses and react to sensory experiences others would not find at all uncomfortable. Bright lights, loud sounds, the tags on clothes or strange smells may set them off. It’s not unusual for kids on the spectrum to find comfort in spinning or flapping or rocking behaviors (called “stims”) or in watching things that spin or flap. When involved in such activities they can appear to be in their own world.
These kids often have a restricted range of interests. They may know all there is to know about dinosaurs or the solar system or fire engines but lack the general knowledge one would expect of a child his or her age.
Although 25 percent of kids with autism have normal to high intelligence, 75 percent have some level of intellectual disability, from very mild to severe and profound.
What is a Spectrum?
A spectrum is simply a range. People on the autism spectrum have different symptoms to differing degrees. On one end of the spectrum are people who used to be diagnosed as having Asperger’s syndrome. (Recent changes in the Diagnostic and Statistical Manual now name it “high-functioning autism.”) People on this end don’t have the language difficulties of people further along the spectrum, but they often do have social difficulties, a resistance to change and a narrow range of interests.
People on the other end of the spectrum are highly impaired and seem to be unreachable. They usually have a significant cognitive impairment as well.
Part of the difficulty in accurately diagnosing and treating ASD is that there is such a range in presentation. This makes treatment all the more difficult because what works for one child with ASD may not be effective at all with another.
What Causes Autism?
There is no known cause at this point. Research does point to some genetic connection. It isn’t unusual to find people on various points of the spectrum within one family. Children who have a sibling with ASD have a greater risk of also having it. There is some evidence that children born to older parents are at greater risk. There tends to be a greater prevalence in ASD in people with other genetic or chromosomal conditions such as Fragile X, Down syndrome, Landau-Kleffner syndrome, Prader-Willi syndrome, and tuberous sclerosis. It is also associated with epilepsy, infantile hydrocephalus and untreated phenylketonuria (PKU).
Please note that although the myth seems to be dying a long and lingering death, there is absolutely no evidence that childhood vaccines cause autism. In most cases, a cause cannot be identified.
The National Institutes of Child Health and Human Development (NICHD) lists five possible clues that your child may have autism:
- Your baby does not babble or coo by 12 months.
- Your baby does not point, wave, or grasp by 12 months.
- Your baby does not say any single words by 16 months.
- Your baby doesn’t say two-word phrases on her or his own by 24 months.
- Your baby has any loss of any language or social skill at any age.
Other clues include that your child:
- makes little or no eye contact.
- does not respond when others point to something of interest.
- has little to no interest in play with children of the same age.
- has little to no interest in spontaneous or make-believe play.
- gets fixated on parts of an object or on a very specific interest.
Although some of the signs are for children as young as one year of age, it’s unusual to diagnose a child before 18 months to age 2.
If you have concerns, ask your pediatrician for an evaluation by a multidisciplinary team. “Multidisciplinary” means that the team should include specialists from a number of areas. Often this includes a speech and language specialist, a psychologist, a neurologist, and a developmental specialist as well as an early learning specialist. What looks like autism may not be autism. Children with an undiagnosed hearing impairment show some of the same symptoms.
It’s critical that an assessment team have familiarity with the culture of the child being assessed. Different cultures have different social customs and therefore teach social skills differently. Eye contact, for example, is expected of American children when addressed by an adult. In some other cultures, a child making eye contact with adults is considered rude.
If parents living in an English-speaking country are not proficient in English, they may not have interacted with their children as American doctors expect. Alternatively, the parents may not be able to answer questions about their child’s development that are necessary for diagnosis. Ideally, an interpreter should be present.
There are also some families that for a variety of reasons do not provide enough modeling for the acquisition of language and social skills at the usual milestone ages. Some adults haven’t developed those skills themselves so can’t teach their children. When the kids reach school, they are behind their peers, not because they have ASD but because they haven’t had enough stimulation or teaching while young.
There currently is no cure for ASD. However, research does show that intervention, preferably before age 3, can have a very positive impact on a child’s development. There are early intervention services all over America. These services provide therapies to help a child learn to talk, to carry on conversations and to interact positively with others. Some children respond so well that the symptoms of concern disappear. Others improve significantly.
Do be wary of promises of alternative therapies such as special diets and special intensive activities. Some of these treatments have been successful with some children. But that doesn’t mean that a particular therapy will be helpful for your child. Remember, one of the confounding truths about ASD is that no two children with ASD are alike. The therapy therefore has to fit the child. Be sure to consult with a specialist before starting a treatment you hear about.
Whom to Call
The first stop is the pediatrician. Share your concerns and ask for an evaluation or a referral to an appropriate evaluation team.
If your child is under age 3, call the Early Intervention center near you to see if your child qualifies for services. If your child is age 3 or older, contact your town’s school system to see what help is available.
If you aren’t certain whom to call, visit the Early Childhood Technical Assistance Center (ECTA) website.
Children with symptoms of ASD are not likely to just outgrow it. According to a 2012 survey, fully 35 percent of kids with ASD currently don’t get a job or go on for further education after high school. Kids on the spectrum need special education services to learn compensatory skills. Helping your child means getting involved. With early treatment and consistent followup, your child can be all she or he can be.