Autism 101: What The Rest of Us Need to Know

I want to take this opportunity to welcome Bobbi Sheahan and Kathy DeOrnellas, Ph.D. to present a carefully prepared introduction on autism for the rest of us. This should come as a welcomed post to my followers, many of whom take an active interest in Autism Spectrum Disorder and Asperger. This is a cause I have taken an active interest in for several months. I consider this to be a special presentation.

Thank you for sharing Bobbie and Dr. DeOrnellas!

Autism 101:  What The Rest of Us Need to Know

By Bobbi Sheahan and Kathy DeOrnellas, Ph.D.

Thank you so much, Rich Weatherly, for asking us to guest post on your blog!  My name is Bobbi Sheahan, and I appreciate the opportunity to talk to your readers about autism.

Ten years ago, when I got married, I knew next to nothing about autism.   Sure, I’d seen Rainman, but I’d never met someone with autism.  Well, that’s not exactly true, but I didn’t know it at the time.  You see, ten years ago, as I mentioned, I was getting married to my dear husband who is, as it turns out, on the autism spectrum.  His Asperger traits are a huge part of what makes him a wonderful husband and a successful engineer, but I’m getting ahead of myself.

My husband wasn’t the one who introduced my family to autism.  Two other people did that:  our daughter, who is also on the spectrum, and Dr. Kathy DeOrnellas.  Since I can’t bring each of you to her to hear Dr. DeOrnellas speak – and I would if I could —  I’m bringing her to you.   I’ll let her have the floor for a while now, so that she can explain to you some basic definitions about autism.

Autism spectrum disorders (ASDs), or Pervasive Developmental Disorders, are the fastest growing class of developmental disabilities in the United States and currently affect over 1.5 million Americans (Autism Society of America [ASA], 2009). In 2007, the Centers for Disease Control and Prevention determined that the prevalence of autism is currently 1 in every 94 for boys and 1 in 150 for all American children (ASA). More recent studies have placed the numbers as high as 1 in 91 children overall, and 1 in 58 boys.  This phenomenon has been widely discussed on television and in the press (Cowley, 2003).

Despite the vast amount of research being conducted each year, there are many different theories and a lot of disagreement on this topic, and it seems that each week brings news of breakthroughs in our understanding.  I do believe that there will be clear and widespread understanding of what causes autism in the foreseeable future.  Causation of autism isn’t what we’re here to explain today, though.  Today, we’re here to explain a bit about what autism is – and what it isn’t.

It’s important that we understand more about autism because it impacts all of us.  Almost everyone knows someone with autism, and it has an enormous impact on families, school systems, and communities.   Whether you’re trying to understand your nephew or a child in your daughter’s class or you’re a businessperson trying to understand how to accommodate people with autism, autism touches your life – or it will soon.  The economic impact of autism – which I use because it demonstrates how impactful autism is to families and communities, and money is easy to quantify — is now just beginning to be well-understood as well.   The Autism Society of America estimates that it costs 3.5 to 5 million dollars to care for a child with autism over his lifetime; the United States spends almost $90 billion each year for autism. This figure includes research, health care, education, housing, transportation, etc.

It has been 70 years since Kanner first wrote about children with autism and Asperger wrote about children with a higher functioning form of autism. In that time, we have learned a great deal; however, we still have far to go.

Much attention is currently being given to “Aspies” in popular culture.  There are several current television shows with characters who are supposed to represent various autistic traits – with varying degrees of accuracy and dignity.

Diagnosis of Autism Spectrum Disorders

 ASDs, also known as Pervasive Developmental Disorders, are diagnosed by comparing a child’s behavior (or the behavior of an individual at any age) to a set of symptoms that have been established as the diagnostic criteria.

Autism Spectrum Disorders (ASDs) fall under the umbrella known as Pervasive Developmental Disorders. Several types of ASDs have been identified, and it is most helpful to think of them as falling on a continuum.

In the United States, the Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition-Text Revision (DSM-IV-TR; American Psychiatric Association, 2000) is the most widely used set of symptoms. The DSM-IV-TR is a sort of encyclopedia of mental health disorders. Psychiatrists write the DSM-IV-TR and use a medical model for interpreting behavioral symptoms of mental health problems. It is important to know that this is the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders and the diagnosis of autism has been handled differently in each edition. As we learn more about a disorder, changes are made in the diagnostic criteria.  The new diagnosis book, the DSM-V, is scheduled to be released in 2013, and it may bring substantial changes that will probably result in a narrowing of the diagnostic criteria and the number of people receiving a diagnosis of autism under the DSM-V.  Outside the U.S., the ICD-10, the tenth edition of the International Classification of Diseases, which is published by the World Health Organization, is used. Since autism is diagnosed in individuals all over the world, it is important to recognize that the DSM-IV-TR is not the only tool used for diagnosing individuals.

 What Autism is – and what it isn’t

Autism is at one end of the continuum and is the most severe type of ASD. Children with autism have unusual behaviors that are repetitive and stereotypical, as well as very restricted interests and activities. They have severely disordered verbal and nonverbal language and as many as half never develop any type of language. Autism is also characterized by impairments in social interaction that include poor eye-to-eye gaze, lack of social or emotional turn-taking, and a failure to develop relationships with peers.  Most children with autism also have delayed intellectual abilities (DSM-IV-TR, 2000).

On the other end of the autism spectrum or continuum, children with Asperger’s Disorder generally have age-appropriate expressive and receptive language skills and average intelligence or above. They have difficulty using and understanding nonverbal behaviors, however, and their pragmatic language skills are typically impaired. As a result, social interactions are quite difficult. Children with Asperger’s Disorder typically have an overwhelming preoccupation with one or more topics (i.e., dinosaurs, skyscrapers, Egyptology, etc.) and are inflexibly bound by routine. They may have stereotyped mannerisms and/or a persistent preoccupation with parts of objects. This form of ASD also appears more frequently in males (DSM-IV-TR, 2000).

Other forms of autism include Rett’s Disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder Not Otherwise Specified. The diagnosis Pervasive Developmental Disorder Not Otherwise Specified (PDD NOS) is given to those children who have some symptoms of an ASD, but not enough for a full diagnosis. The diagnosis of PDD NOS, also known as atypical autism, is used when children have unusual symptoms or when their symptoms become apparent at a later age than is typical (DSM-IV-TR, 2000).  If you’re picturing a spectrum, PDD NOS is in the middle.

Much of the literature and discussion about autism deals with children with autism.  It is good that people are starting to pay more attention to adults on the autism spectrum too.  Although many people do change over time or improve in some ways – sometimes substantially – autism isn’t something that you outgrow.  Adolescents and adults have ASD and it affects their lives just as much as it can for children.

As you can see, Dr. DeOrnellas has helped me to understand quite a bit about autism.

This is the first of a two-part series.  In our next article, we will talk about safety concerns and introduce you to some of the more dangerous behaviors associated with autism.

References:

American Psychiatric Association. (2000). Diagnostic and statistical manual of mental

disorders (4th ed., text rev.). Washington, DC: Author.

Autism Society of America. (2009). Autism facts. Retrieved March 20, 2009 from

http://www.autism-society.org/site/PageServer?pagename=about_home

Cowley, G. (2003, September 8). Girls, boys, and autism. Newsweek, 42-50.

Bobbi Sheahan and Kathy DeOrnellas, Ph.D. are the authors of What I Wish I’d Known About Raising a Child With Autism; A Mom and a Therapist Offer Heartfelt Guidance for the First Five Years (Future Horizons, 2011).   Portions of this article are excerpted and adapted from Chapters 1 and 2 of the book, which is available at www.fhautism.com and wherever books are sold.   Readers of this blog can use the promotional code BOBBI for 15% off of of What I Wish I’d Known About Raising a Child With Autism  and any other Future Horizons product or conference, plus free shipping.  Bobbi’s website is www.bobbisheahan.com, and she would love to hear from you at me@bobbisheahan.com.  You can also connect with her on Twitter at  @BobbiSheahan or on Facebook.