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.

19 Comments

Filed under Autism, Understanding Autism

19 responses to “Autism 101: What The Rest of Us Need to Know

  1. A sensitive, well written piece, which deals with the subject of ASD in a clear and accurate presentation. Considering all the misinformation on developmental disorders, this informative interview should dispel any misconceptions. I loved it, I look forward to part two! Thank you Bobbi and Dr. DeOrnellas.

  2. Thanks for hosting this Rich, and to Bobbi Sheahan and Kathy DeOrnellas for sharing their experiences and expertise.

    Anything that promotes awareness and understanding of those with more unusual gifts and outlooks such as those with Aspergers and Autism is worthwhile. It was worth taking the time to write this, and well worth anyone’s time to read.

    • Sandy and T.James, thank you for sharing your expert opinions about this outstanding contribution.

      Readers in need of more information would do well to consider the purchase of their book: 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).

    • Thank you so much! You made my morning!

  3. Excellent article. Thank you for sharing it with us.

  4. Such an informative piece. Thanks for enlightening us!

  5. Sonia and August, thank you! I’m pleased you find the information enlightening. I’m honored to have worked with Ms Sheahan and indirectly with Dr. DeOrnellas. Their work is compelling and a valuable resource for anyone wanting to better understand ASD.

  6. B Mckenzie

    Thank you for stressing that one does NOT typically “outgrow” autism and I’d add that its my opinion that often times the individual and family is affected even more so once the Autisitc child becomes the Autistic ADULT because society will then elevate its social and legal expectations and WILL NOT be as forgiving of their short fall as perhaps they were when they were kids.

    It amazes me the difference in financial, social and legal support of children vs. adults with Autism AS WELL AS media/parental/public exposure and concern with diagnosis vs. treatment/services. I personally find it a bit disappointing that TREATMENT AND SERVICES of Autism has been so neglected in our revolution of understanding of Autism over the years and really hope to hear more public discussion of it and focus on adults because whether society wants to invasion it or not, these kids with Autism will eventually become Adults with Autism…..FACT. THANK YOU FOR THIS WONDERFUL EDUCATIONAL ARTICLE.

    • Thank you for highlighting the importance of meeting the needs of Autistic Adults. You raise important concerns that I would love to see addressed in greater detail in the future.

      If you haven’t read my interview with Sandy Westendorf, Guest Interview – Author of The World According to August, on Autism, I’d like to point out a link with videos of adults affected by Autism.

      To quote Sandy: “http://www.wretchesandjabberers.org/screening2.php, I was delighted to see other like-minded people. The short clips on the link show two men with autism trying to dispel many of the misconceptions of developmental disabilities. Their message was exactly what mine is – inside we are all the same.”
      Thank you again for your comments.

    • B –
      I am so glad that you have brought up this topic! While autism awareness — and acceptance and accommodation — have grown a lot, you are right — it is largely focused on the young kids. All of those kids — including mine! — will soon be grown. I am hearing a lot about the struggles of young adults to launch themselves into successful adult lives, and Temple Grandin has been speaking about this at the Future Horizons conferences a lot.
      Thank you for your kind words, and thank you for calling our attention to the fact that autism affects us throughout our lives.
      Bobbi

      • Bravo, Bobbi. I’ll say again, The subject of adults with autism is a serious topic that I’m eager to address through this blog. I’m eager to hear from anyone interested in sharing a credible piece on the subject.
        Rich

  7. Rich, thank you for all that you do. You post informative pieces from others and you write sensitive, smart pieces that add value to our lives. Bobbi comments above that autism “affects us throughout our lives”. Yes, it does.
    I have extensive direct and indirect experience with people over age 18 who are on the autism spectrum. There is no end to learning within this field. As employers, friends, family members… we can make a significant impact on those who are on the spectrum. I hope to post more soon. Aloha! Mia

    • Thank you Mia for your encouraging words. You are correct. Whether we realize it or not, all of us are impacted in some way by autism spectrum disorders. I am honored to have a couple of talented friends and writers who have written on the subject, S.L. Westendorf and Bobbi Sheahan.

      These authors have generously shared their experiences and expertise. They are the ones who have truly shown me how much we all are affected by these the ASD spectrum.

  8. Hi Rich.
    Here’s a comment for volunteer organizations that can be extended to employers in any industry: With awareness and a little effort, you can create a win-win situation for your organization and your team. I was dismayed when I learned last week that a volunteer was “let go” because they thought she was too aggressive with the animals at a local shelter. She loved animals, and she was not hurting the animals — I know this first-hand. I asked the shelter whether they explained to the volunteer what she had done wrong, and how to improve her handling of the animals. This volunteer seemed quite “high-functioning.” I believe that improved communication with her could have made a big difference in her handling of the animals. I think lack of understanding (of autism) prevented this communication from happening.

  9. MIa, thank you for caring and for your insight. I suspect that too many decisions are made based on personal or ill informed reasons. It is critical that decision makers gather a body of knowledge about the situation from multiple sources.
    It appalls me to see decisions based on petty grievances or incorrect information. More weight needs to be given to why an employee or volunteer acted in the manner they did.

    Appreciate your input 🙂

  10. thank you for the valuable information
    i always wanted to know that

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