Naming a time for awareness brings an issue into focus. It gives us a reason to do something extra (such as post this article) to help more people understand it. It makes people who are dealing with it feel less alone, less apart, and less misunderstood.
Somebody, somewhere, declared April to be Autism Awareness Month. I’m all for it. We need to be more aware of it so that children are diagnosed early and accurately to make sure that they get the treatment they need.
What is Autism?
Autism is a neurological disorder that usually becomes apparent by the age of 3 if people know what to look for. Part of the problem in diagnosing autism is the wide range of possible behaviors and abilities. However, there is usually a distinct pattern of significant impairment in three major areas:
- Impairment in reciprocal social interaction. Children who are on the autism spectrum don’t get the give and take of conversation and sharing of experience. Even when very little, neurotypical kids will point to things that interest them so that others will see it too. They will babble back and forth, imitating conversation. Autistic kids seem to be in their own world, uninterested in sharing it with others or unable to understand that other people aren’t as interested as they are in their obsession of the moment. Higher-functioning kids with autism may come off as rude, clueless, or self-centered because of their apparent inability to read what is socially appropriate at any given time.
- Impairment in communication skills. Their language may be unusual, stilted, or limited. High-functioning kids on the spectrum may have large vocabularies but may use words incorrectly or idiosyncratically. Lower-functioning kids may not speak at all.
- Presence of stereotyped behaviors, interests, and activities.Spinning, flapping, and finger-flicking are common in young kids and even in some autistic adults. Many rock to comfort themselves. Children may develop an intense obsessive interest in just about anything. I’ve known kids who are walking encyclopedias about pirates or fishing or who know every detail of every one of the Star Wars movies. They can talk for hours about their “thing” but are unable to have even a brief conversation about almost anything else.Some of the more disabled kids with autism I’ve known have been obsessed with things such as different kinds of tires, ceiling fans or string. They are happiest when they can watch or play with their particular interest. High-functioning autistic adults may become experts in arcane academic or technical areas, again to the exclusion of almost everything else.
In addition, many of these children show sensory processing disorders. They can be intensely over- or under-sensitive to sensory stimulation (lights, sounds, smells, or touch). Some are unable to stand the buzz of fluorescent lights or the smell of certain foods, the sensation of certain fabrics or changes in temperature, to name only a few examples. Some have a very high tolerance for pain. (A school program called me recently because a teenaged girl seemed to feel no pain when she pulled off fingernails.) Some can’t manage any discomfort at all. I know one preschooler who walks on tip-toe whenever he is barefoot because he can’t tolerate how grit feels on his feet.
Autism is associated with a known medical condition in only 10 to 20 percent of cases. It is thought to be genetic since 60 to 90 percent of identical twins both have it while in fraternal twins it is less than 5 percent. As yet, there is no genetic test or brain scan or medical test to use for diagnosis. We rely on observation and the experience of professionals.
Why Does the Prevalence Rate Keep Growing?
In my professional lifetime, the odds of a child having autism have kept growing. In the 1970s, the statistic worldwide was 4 in 10,000. Between 1985-1995, the number tripled to 12 in 10,000. The rate was estimated to be 1 in 155 by 2002; 1 in 110 in 2006 and 1 in 88 in 2008. Some studies are now suggesting that it afflicts 1 in 50 kids in the U.S.
What happened? Partly it’s about a change in the acceptance of autism as a genuine, distinct disorder. Partly it’s due to a change over time in the description of criteria and the number of criteria that need to be met to make a diagnosis.
When I was in graduate school in the early 1970s, we were using the DSM-II. Autism isn’t mentioned except as a subset of childhood schizophrenia. Frankly, back then, I’d never heard of it. When DSM-III came along in 1980, a section on infantile autism was added and the first effort was made to delineate criteria. It took until the DSM-IIIR in 1987 for autism disorder to appear with a well-articulated set of 16 criteria, 8 of which had to be present to warrant a diagnosis. By the time the DSM-IV (1994) and DSM-IVR (2000) came out, the number of criteria had been reduced to 12, with 6 being needed for a diagnosis. With each succeeding edition, mental health professionals became more aware of autism as a possible diagnosis.
At least some of the increase in prevalence is due to that awareness on the part of professionals. Some of it is probably because kids who at one time might have been diagnosed with psychosis or retardation or hyperactivity are now being assigned the diagnosis of autism. And some of it is due to the fact that parents and teachers have become much more attuned to the possibility that a child is on the autism spectrum, so evaluations are occurring at a much earlier age. Finally, it’s possible that there is something going on in our environment or in genetics that is causing an increase in the disorder. That last one remains a mystery.
What if You Suspect Your Child Has Autism?
With the increase in autism prevalence and awareness has come an increased sophistication in screening. A diagnosis of autism is rarely assigned before 15 to 18 months of age. If by then you suspect that your child isn’t developing as he or she should, you can first go to one of the many websites that have quizzes and checklists for the symptoms of autism for the age of your child. But please don’t go on the results of those websites alone. There are many reasons why a child may not be keeping up with peers. It’s just a good, if crude, first effort.
The next step is to ask your pediatrician to take a look at your web-based checklists and to decide if a referral to an autism screening team is advisable. There are early childhood interventions (EI) teams all over the U.S. who can make a more refined diagnosis and who can offer treatment if it is needed. If there is no EI team nearby, there is probably a diagnostic team in a mental health clinic or children’s hospital near you. An accurate diagnosis is essential. Diagnosis is what determines what types of treat may be the most helpful for your child.
Early Intervention Matters
There is no cure for autism but when children get intense and appropriate treatment early on, preferably before age 3, many can and do learn compensatory skills. Excellent programs provide physical, occupational and speech therapy as well as coaching in social and language skills for the child. They also provide coaching and support for parents so they can reinforce and continue the treatment at home. If there is no comprehensive program nearby, there is often a resource center connected with a school or with a medical center that can help families get the services the child needs.