Understanding Autism

A redefinition of autism, earlier diagnosis and new treatments are cause for hope.

Autism and the spectrum of disorders associated with autism are severe social relatedness and communication disorders.

Autism and the spectrum of disorders associated with autism are severe social relatedness and communication disorders. Known more broadly today as autism spectrum disorder, the problem affects more than two children in every 1,000 in the United States, according to the U.S. Centers for Disease Control. This means there are at least 1.5 million children and adults with autism in America, making it one of the most common developmental disabilities in the country.

Our understanding of autism has changed radically in the past few years. There has been a redefinition of the disorder, a rise in incidence and breakthroughs in treatment. As a result, there is a new emphasis on early diagnosis and treatment, which can markedly change outcome.

Other recent developments include the challenge of finding qualified therapists and unfounded worries about autism’s association with immunizations.

Content of this article:

1. Changes in Autism

2. What These Changes Mean

3. For parents of a child with autism spectrum disorder

4. For other parents and educators

Other Disorders in the Autistic Spectrum

Given the range of autistic spectrum disorder, many of us will have contact with a child affected by autism. To better understand these children, and to help those with concerns about their own children, we all need to know more.

To get the most up-to-date information, we recently spoke with Catherine Lord, Ph.D., a nationally recognized expert on autism from the University of Michigan. We also spoke with experts Janice Ware, Ph.D., and Leonard Rappaport, M.D., respectively the associate director and the director of the Developmental Medicine Center at Boston’s Children’s Hospital. (Editor’s Note: For disclosure’s sake, Dr. Rappaport is also the author’s husband.) Here’s what we learned:

Changes in Autism

• Previously thought of as a single disorder, autism is now considered to encompass a spectrum of social relatedness and communication disorders – with only the most severe cases being labeled “autistic.”

A decade ago, autism was thought of as a rare and distinct condition. This disorder was made familiar by Dustin Hoffman’s portrayal of an autistic adult in Rain Man.

“Hoffman did a beautiful job of looking autistic, and he did everything we associate with this disorder,” Lord says. “But he showed us about 10 out of the 12 or so behaviors associated with autism, including: echolalia, idiosyncratic speech, verbal and behavioral rituals, preoccupations, unusual sensory responses, as well as difficulties with eye contact, facial expressions and gestures that are common to almost all individuals with autistic spectrum disorder. Most children and adults do not have all, or even most, of these behaviors.”

As clinicians and researchers came to realize that autism is part of a spectrum of disorders, Lord explains, the diagnostic framework was fundamentally changed, as was treatment and prognosis.

“Children were previously diagnosed as autistic only at the extreme of these behaviors, and usually when they were already over 6 years of age, when fewer successful treatments are available,” Ware explains. “Therefore, many professionals hesitated to diagnose a child as autistic. We now know that with early diagnosis, treatment and support, children with autism spectrum disorder can make strides never believed possible, even a decade ago.”

• The incidence of autism has doubled and appears to be growing.
“In the 1980s and early 1990s, we counted only the children most severely affected with these disorders as autistic,” Lord explains. “The incidence was one per 1,000. In 1988, the diagnostic framework changed, and because of a broadened definition, the incidence increased. Now, we believe the numbers are more like two per 1,000.”

The Centers for Disease Control recently completed a small study and the incidence was six per 1,000. “This higher rate with a smaller sample suggests further changes,” Lord notes.

Ware points out that most experts believe that much, if not all, of the increase is due to the new understanding of these disorders as a continuum of severity – ranging from Asperger’s syndrome on the mild end to autism at the severe end – and the fact that children within this spectrum are being diagnosed earlier.

• Although fear of a possible link between immunizations and autism persists, there is no empirical evidence supporting this association.
Public concern about a possible association between immunizations and autism – particularly with the measles, mumps and rubella (MMR) immunization – have prompted researchers to investigate the matter. So far, no scientific evidence has been found to support the claim. As recently as last year, an English study found “no evidence for variant autism … from MMR,” according to a report in the November 2001 edition of the journal Vaccine-Preventable Disease.

“Parents may make the association because it is often at around age 2 that we are now able to diagnose autism. This is a difficult diagnosis and we all search for reasons why. This also happens to be when many immunizations occur,” Dr. Rappaport says. “But given that there is absolutely no scientific evidence of this connection, we, as physicians, worry this may become an excuse for not having immunizations, which makes a child vulnerable to a host of other problems.”

• When children are diagnosed earlier, treatments are much more effective.
Previously, autism was typically diagnosed at 5 to 10 years of age, and progress was slow and limited. Now, experts know that earlier diagnosis is both possible and optimal.

The disorder must be identified correctly and early to achieve the best success with treatment, Ware says. Sometimes, with careful diagnosis, this happens between the ages of 18 months and 3 years.

“There is an important window for success during early childhood,” she notes. “But this is a clinical diagnosis. There are no tests or procedures or pills to make this diagnosis. It requires that a person who knows these disorders see the child early on.”

This is why parents who are worried about their young child should get him or her tested by an expert as soon as possible, Lord says. “When we’ve seen children at a young age and gotten them the treatment they need, which is very intensive, we have seen amazing improvement.”

Today, children across the spectrum of autistic disorders are receiving increasingly effective treatments. Several treatment programs, including applied behavioral analysis (ABA), have produced dramatic results. How much and which types of treatment are best for each child are dependent on the child’s unique needs.

Given the intensity and cost of these treatments, however, there is often debate over how much one-on-one therapy a child should receive. This therapy is further evaluated when deciding the timing, quantity and logistics of treatment when a child reaches school age.

With early diagnosis, and the anticipation of possibly dramatic improvement, parents and professionals both want as much treatment as early as possible. Yet, cost and lack of appropriately trained staff can make this difficult.

ABA is an intense behavioral intervention designed to improve the functioning and communication of children with autism spectrum disorders. A therapist works with the child directly, usually one-on-one, on specific behaviors for up to 30 hours per week. Research on ABA outcomes has shown significant improvement, which seems to last over time, in the functioning of these children.

Another treatment, “floor time,” is a more child-directed form of therapy. In contrast to ABA, which is behavioral and usually adult directed, floor time is more interactive. Some therapists use a purely ABA or a purely floor-time approach, while others use a combination of these two therapies with other treatments that are tailored to the child’s needs.

What These Changes Mean

These changes mean different things to different parents. Here’s what the experts advise:

For new parents worried about a young child’s relatedness/communication skills:

“As parents, we know early on how our child acts toward us and others – before age 2. We need to trust our concerns and ask for help,” Rappaport suggests. “For example, by 13 months most children are pointing regularly to communicate what they want, to show you things and to interact with you and others. If your child is not pointing, consider if there are other developmental behaviors you are not seeing. If so, and you believe your child is not where he or she should be regarding communication and relating to you and others, trust your concerns.”

If you are unsure or unsatisfied with what others are telling you, ask your pediatrician for a referral, Ware urges, noting that it takes a person with expertise in autism or with speech and language experience to make this diagnosis.

Lord advises parents to look for the things children don’t do – not what they do. “As a parent, you are one of our best observers,” she says. “But remember, we all accommodate for our children and learn how to communicate with them.”

If your child spends more and more time by himself, playing with one toy or in front of the TV, intervene, Lord urges. Look for things your child likes to do and work to keep her engaged.

Lord suggests contacting your local school system about evaluation and services for children ages 3 and up. Many districts will even see you and your child before age 3 for testing or direct you to where you can get testing for a younger child.

For parents of a child diagnosed with autism spectrum disorder:

• Be aware of research and interventions that work. Find an expert in your community who will listen to your concerns and help you sort through treatment options. You need a sounding board, so make it a priority to find one.

• Be diligent regarding your other children. While this cluster of disorders does not now appear to be associated with a single gene, there is a strong genetic connection.

• Know your rights and your child’s rights. Contact organizations and associations that offer support and information. (See Resources.)

• Pace yourself. These are disorders that do not change rapidly. Early intervention helps enormously and offers good reasons to be hopeful. But treatment takes time, and there will be plateaus as well as gains.

For other parents and educators:

• Immunizations are important and safe. Don’t make children vulnerable to disease because of misinformation about immunization and autism.

• Many children with autism spectrum disorders can be included in regular classrooms and school environments. Help your children to understand who they are. Create an awareness of what is difficult for them and what is not.

• Be kind and give parents the benefit of the doubt if you see a child whose behavior is different than your child’s. In the long run, support from other people is vital to families with a child with this disorder. We all need people around us who like our kids and accept them. Be one of these people.

• Include children with social-relatedness problems in social activities whenever possible. Inclusion in typical social opportunities such as birthday parties, outings and play dates can be difficult to come by for these children. Social experience is highly important for all children.

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