16. Autism

An Introduction to Autism

By NATIONAL INSTITUTE OF MENTAL HEALTH

Autism. Not until the middle of the twentieth century was there a name for a disorder that now appears to affect an estimated 3.4 every 1,000 children ages 3-10, a disorder that causes disruption in families and unfulfilled lives for many children. Research from 2009 suggests autism now affects every 1 in 110 children.

In 1943 Dr. Leo Kanner of the Johns Hopkins Hospital studied a group of 11 children and introduced the label early infantile autism into the English language. At the same time a German scientist, Dr. Hans Asperger, described a milder form of the disorder that became known as Asperger syndrome.

Thus these two disorders were described and are today listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) as two of the five pervasive developmental disorders (PDD), more often referred to today as autism spectrum disorders (ASD). All these disorders are characterized by varying degrees of impairment in communication skills, social interactions, and restricted, repetitive and stereotyped patterns of behavior.

Table of Contents

• An Introduction to Autism
• Autism Spectrum Disorders In-Depth
• Conditions Associated with Autism
• How Autism is Diagnosed
• Treatment of Autism
• Medications for Autism
• Adults with Autism

Autism spectrum disorders can often be reliably detected by the age of 3 years, and in some cases as early as 18 months. Studies suggest that many children eventually may be accurately identified by the age of 1 year or even younger. The appearance of any of the warning signs of ASD is reason to have a child evaluated by a professional specializing in these disorders.

Parents are usually the first to notice unusual behaviors in their child. In some cases, the baby seemed “different” from birth, unresponsive to people or focusing intently on one item for long periods of time. The first signs of an ASD can also appear in children who seem to have been developing normally. When an engaging, babbling toddler suddenly becomes silent, withdrawn, self-abusive, or indifferent to social overtures, something is wrong. Research has shown that parents are usually correct about noticing developmental problems, although they may not realize the specific nature or degree of the problem.

The pervasive developmental disorders, or autism spectrum disorders, range from a severe form, called autistic disorder, to a milder form, Asperger syndrome. If a child has symptoms of either of these disorders, but does not meet the specific criteria for either, the diagnosis is called pervasive developmental disorder not otherwise specified (PDD-NOS). Other rare, very severe disorders that are included in the autism spectrum disorders are Rett syndrome and childhood disintegrative disorder. This brochure will focus on classic autism, PDD-NOS, and Asperger syndrome, with brief descriptions of Rett syndrome and childhood disintegrative disorder below.

Prevalence of Autism

In 2007 — the most recent government survey on the rate of autism — the Centers for Disease Control (CDC) found that the rate is higher than the rates found from studies conducted in the United States during the 1980s and early 1990s (survey based on data from 2000 and 2002). The CDC survey assigned a diagnosis of autism spectrum disorder based on health and school records of 8 year olds in 14 communities throughout the U.S. Debate continues about whether this represents a true increase in the prevalence of autism. Changes in the criteria used to diagnose autism, along with increased recognition of the disorder by professionals and the public may all be contributing factors. Nonetheless, the CDC report confirms other recent epidemiologic studies documenting that more children are being diagnosed with an ASD than ever before.

Data from an earlier report of the CDC’s Atlanta-based program found the rate of autism spectrum disorder was 3.4 per 1,000 for children 3 to 10 years of age. Summarizing this and several other major studies on autism prevalence, CDC estimates that 2-6 per 1,000 (from 1 in 500 to 1 in 150) children have an ASD. The risk is 3-4 times higher in males than females. Compared to the prevalence of other childhood conditions, this rate is lower than the rate of mental retardation (9.7 per 1,000 children), but higher than the rates for cerebral palsy (2.8 per 1,000 children), hearing loss (1.1 per 1,000 children), and vision impairment (0.9 per 1,000 children).3 The CDC notes that these studies do not provide a national estimate.

About Autism

Autism spectrum disorder is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a “spectrum disorder” that affects individuals differently and to varying degrees. There is no known single cause of autism, but increased awareness and funding can help families today. Some of the behaviors associated with autism include delayed learning of language; difficulty making eye contact or holding a conversation; difficulty with executive functioning, which relates to reasoning and planning; narrow, intense interests; poor motor skills’ and sensory sensitivities. Again, a person on the spectrum might follow many of these behaviors or just a few, or many others besides. The diagnosis of autism spectrum disorder is applied based on analysis of all behaviors and their severity. In March 2014, the Centers for Disease Control and Prevention issued their ADDM autism prevalence report. The report concluded that the prevalence of autism had risen to 1 in every 68 births in the United States – nearly twice as great as the 2004 rate of 1 in 125 – and almost 1 in 54 boys. The spotlight shining on autism as a result has opened opportunities for the nation to consider how to serve families facing a lifetime of supports for their children. In June 2014, researchers estimated the lifetime cost of caring for a child with autism is as great as $2.4 million. The Autism Society estimates that the United States is facing almost $90 billion annually in costs for autism. (This figure includes research, insurance costs and non-covered expenses, Medicaid waivers for autism, educational spending, housing, transportation, employment, related therapeutic services and caregiver costs.)

Know the signs: Early identification can change lives

Autism is treatable. Children do not “outgrow” autism, but studies show that early diagnosis and intervention lead to significantly improved outcomes. For more information on developmental milestones, visit the CDC’s “Know the Signs. Act Early” site.

Here are some signs to look for in the children in your life:

• Lack of or delay in spoken language
• Repetitive use of language and/or motor mannerisms (e.g., hand-flapping, twirling objects)
• Little or no eye contact
• Lack of interest in peer relationships
• Lack of spontaneous or make-believe play
• Persistent fixation on parts of objects

What Is Autism? What is Autism Spectrum Disorder?

 Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. With the May 2013 publication of the DSM-5 diagnostic manual, all autism disorders were merged into one umbrella diagnosis of ASD. Previously, they were recognized as distinct subtypes, including autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. 

ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art.

Autism appears to have its roots in very early brain development. However, the most obvious signs of autism and symptoms of autism tend to emerge between 2 and 3 years of age. Autism Speaks continues to fund research on effective methods for earlier diagnosis, as early intervention with proven behavioral therapies can improve outcomes. Increasing autism awareness is a key aspect of this work and one in which our families and volunteers play an invaluable role. Learn more …

How Common Is Autism?

Autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) identify around 1 in 68 American children as on the autism spectrum–a ten-fold increase in prevalence in 40 years. Careful research shows that this increase is only partly explained by improved diagnosis and awareness. Studies also show that autism is four to five times more common among boys than girls. An estimated 1 out of 42 boys and 1 in 189 girls are diagnosed with autism in the United States.

ASD affects over 3 million individuals in the U.S. and tens of millions worldwide. Moreover, government autism statistics suggest that prevalence rates have increased 10 to 17 percent annually in recent years. There is no established explanation for this continuing increase, although improved diagnosis and environmental influences are two reasons often considered. Learn more …

What Causes Autism?

Not long ago, the answer to this question would have been “we have no idea.” Research is now delivering the answers. First and foremost, we now know that there is no one cause of autism just as there is no one type of autism. Over the last five years, scientists have identified a number of rare gene changes, or mutations, associated with autism. A small number of these are sufficient to cause autism by themselves. Most cases of autism, however, appear to be caused by a combination of autism risk genes and environmental factors influencing early brain development.

In the presence of a genetic predisposition to autism, a number of nongenetic, or “environmental,” stresses appear to further increase a child’s risk. The clearest evidence of these autism risk factors involves events before and during birth. They include advanced parental age at time of conception (both mom and dad), maternal illness during pregnancy and certain difficulties during birth, particularly those involving periods of oxygen deprivation to the baby’s brain. It is important to keep in mind that these factors, by themselves, do not cause autism. Rather, in combination with genetic risk factors, they appear to modestly increase risk.

A growing body of research suggests that a woman can reduce her risk of having a child with autism by taking prenatal vitamins containing folic acid and/or eating a diet rich in folic acid (at least 600 mcg a day) during the months before and after conception.  

Increasingly, researchers are looking at the role of the immune system in autism. Autism Speaks is working to increase awareness and investigation of these and other issues, where further research has the potential to improve the lives of those who struggle with autism.Learn more …

What Does It Mean to Be “On the Spectrum”?

Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have average to above average intellectual abilities. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and “atypical” ways of viewing the world. Others with autism have significant disability and are unable to live independently. About 25 percent of individuals with ASD are nonverbal but can learn to communicate using other means. Autism Speaks’ mission is to improve the lives of all those on the autism spectrum. For some, this means the development and delivery of more effective treatments that can address significant challenges in communication and physical health. For others, it means increasing acceptance, respect and support.

Resources: We are pleased to offer many resource-packed tool kits for free download (hereand here), including the 100 Day Kit for families who have a child recently diagnosed with autism. For still more information and resources please see our Video Glossary and FAQsand special sections on Diagnosis, Symptoms, Learn the Signs, Treatment, Your Child’s Rights, Asperger Syndrome and PDD-NOS. These resources are made possible through the generous support of our families, volunteers and other donors.

http://www.autism-society.org

http://www.autismspeaks.org

http://www.autism.com/