Tag Archives: Autism spectrum

Autism Follow-up: Wandering and Other Dangerous Behaviors in Autism

I’m honored by the return of Bobbi Sheahan and Dr. DeOrnellas. In this post they have agreed to share insights into  behavioral risks associated with Autism.

Wandering and Other Dangerous Behaviors in Autism

By Bobbi Sheahan and Kathy DeOrnellas, Ph.D.

Thanks you, Rich, for having us on your blog!  We are back for part 2.  Our first segment was an introduction to autism. In Part 2, we are going to discuss some dangerous behaviors that are often part and parcel of raising a child on the autism spectrum.  Many of these are things I (Bobbi) would never have imagined before having an autistic child, and I have a pretty good imagination.

We’ll start with one of the more alarming behaviors sometimes exhibited by children with autism:  wandering or running.  We expect toddlers to take a run, if you will, at running away from Mom or Dad.  When a child has autism, that phase can go on for year after hair-raising year.

One mom, let’s call her Oona – has an elementary-school-aged son who has given her more than a run for her money:

“He would run out the door, in the street, thru parking lots, down the block, away, away, away. We had to install key-to-key deadbolts & flip-locks on all of our doors. We got handicap parking tags so we could park right next to the door. And sometimes I made him wear a strap from my wrist to his or from the shopping cart or stroller to his wrist. It was horrible & terrifying having to always be worried that someone forgot to lock a lock & he could be two blocks away at any time. On top of the running, he had absolutely no fear/safety boundaries. He would run into traffic or stop & talk to *anyone* telling them within minutes that they were his best friend & he loved them. Very scary stuff.”

I can relate to the Extreme Locks – I have had friends actually laugh at our locks and alarms, and the one on our front door actually once foiled a burglar (!), but Oona risked the scorn of the community – and certain members of her extended family — by taking the Next Step and using a leash.  I asked her how that was received. She said:

“I never got a ton of questions, usually just the sideways looks. Right after diagnosis, I was happy to volunteer answers to the looks – “he has an autism disorder, he runs away”. Later, I just stopped caring what people thought. I don’t have the time or the patience any longer to explain to everyone that I’m not a horrible parent.  I did get comments from my family (who do not understand his diagnosis & what it means for him, or care to educate themselves) like “a leash?!” or the ever popular & interchangeable, “Bring him to my house, I’ll straighten him out” & “you just need to spank him more” (typically said much more crudely by my mother-in-law as “beat his a**” – lovely).

Stories like this make me less likely to judge.  I certainly did judge myself a lot when my own child showed tendencies to flee.  My daughter’s running phase lasted for four years.  Four. Long. Years.  I remember vividly the day that she stood transfixed, staring at an open gate, repeating the cautions I’d been saying to her for years.  I admit it – I cried.  For joy, for relief, and for finally being able to laugh about the time she escaped on a tricycle and took years off the end of my life.

But wandering is no laughing matter.  According to multiple press and online reports, one father in Canada experienced the nightmare of having his nine-year-old daughter wander from their fenced yard, only to be found some hours later in a neighbor’s yard; authorities subsequently took the girl from her father’s custody based on this incident, according to this source http://www.autismkey.com/child-with-autism-taken-by-authorities-ayn-van-dyk/ and scores of others like it online.

What Can We Do About Running?  It took our family several years to instill the “do not run away” message, and it will take some folks even longer.  What can parents do in the meantime?  Besides the aforementioned locks and other physical protections, some families employ personal GPS monitors or autism service dogs who are trained to stay with the children and whose leashes are also snugly attached to the child’s wrists.  The question of why our kids wander is a tough one and beyond the scope of this article, but some folks say that the service dogs may also alleviate some of the anxiety that leads to wandering.

Police departments in the U.S. also have free biometric registries where you can provide your child’s fingerprints, pictures, and some basic information.  Many of us also have medical alert bracelets for our kids.  Special Education classrooms often have an aide dedicated to watching the doors, and I spoke with one mom who rejected an otherwise good school solely on the grounds that the front door opened up onto a busy parking lot and an even busier street.

The National Autism Association has a wonderful twelve-point list of action items to address safety concerns.  The list, which can be found in its entirety here, http://www.autismsafety.org/prevention.php?way=12  , includes several of the items mentioned here, plus some others such as designating an Adult In Charge at gatherings so that it’s clear that someone is watching our kids.

Wandering isn’t the only danger that our kids can get into. Jenny Herman, who is the Social Media coordinator for Home Educating Family and blogger extraordinaire at www.manyhatsmommy.com, tells the story of her son’s penchant for underdressing:

“The other day Josh and a friend left the apartment ahead of another mom and I. They went down the hall and out the door. They were waiting next to the friend’s van, but Josh was in shorts and NO SHOES in 30-something degree weather!”

Jenny also had a lot to say about property damage, inflicted with objects that could also be dangerous to life and limb:

“Josh has an obsession with using a tack (push pin, whatever you want to call it) to dig in the wall. He has many dime-sized holes around his room. In this incident, I came in to check on him, and he was digging at the wall next to the night light with a tack to “let more light into your room, Mommy.” At that point, he had only taken off the white paint and you could see the brown covering of the sheet rock (or whatever it is).

This FOOLISH mommy did not cover up the spot. Six weeks later, he came out to tell me he was having a hard time sleeping. Then he told me his body just had to carve something. I went into his room, and there was sheet rock dust all over the wall, the night light, his radio, and the floor. His toy screwdriver was on the floor. He had used his toy screwdriver to dig THROUGH the wall, a Real Live Hole in the Wall, as in you could see the dark space in between the walls. I said, “What did you use to dig that hole?”

“A piece of glass.”

“GLASS! What glass?” trying not to jump out of my skin.

“The glass that was by the ladder.”

“Where is it?”

“I put it in the hole.”

He had no cuts or blood, so I think he found a piece of plastic that looked like glass. I covered the hole w/paper and masking tape and amazingly nothing more has happened there. However, he cannot leave the wall alone! I’ve found other small spots…

Jenny also shared this photo with me – which I hasten to add does not reflect any physical injuries to her son –but I won’t even ruin it by attempting to caption it. It’s already well over a thousand words, I figure:

The lack of caution that we see in some kids definitely extends to safety concerns around water.  Erin McMinn Nieman, in her blog called Noah’s ARC, tells the harrowing story of her son’s close call in “Mothers’ Day Under the Sea,”  http://www.noahs-arc.com/archives/972   Her story of her son’s plunge into a murky lake and her quick rescue of him is harrowing, but what really resonated with me was his response to being saved from drowning:  “Noah walked happily on, holding my hand as if nothing had happened.”

These stories highlight the importance of safeguarding our children.  While these stories may be amusing to someone who did not experience them, our children are in significant danger and have a much higher risk of engaging in dangerous behaviors that result in an injury.  They are more likely to suffer head injuries and to poison themselves accidentally; they are also more likely to end up in hospital emergency rooms.

This is true for several reasons. Many children on the spectrum do not experience pain the way the rest of us do and, rather than learning that the stove is hot on the first trial, they touch the stove again and again.  They also do not understand that certain situations are dangerous.  For example, our children may not understand that running out into traffic can result in injury or death; rather, they are focused on escaping an uncomfortable situation.

While all children are impulsive at times, children on the spectrum are especially so and do not think through the consequences of their behaviors. As a result, they can end up in some precarious situations. Although keeping our children safe can be very difficult, it is critical. I suggest that in any situation you have a “designated watcher” for your child – someone who is responsible for seeing that he or she remains safe. This is especially important in crowds, unfamiliar settings, or anywhere your child feels uncomfortable.

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 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 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.

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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.

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Book Review – The World According to August by Sandy Westendorf

The World According to August – One Good Friend” opens with an effective statement of purpose; what it is and what it is not.

The book touched me deeply. It gives readers a deeply personal, yet insightful picture of a child with autism; how he and they are similar in many ways and yet different, as well.

It is the intent of the author to dispel common misconceptions about autistic children. The author uses a true story to illustrate the common, shared emotions that we all experience. We learn of concerns and needs they experience. This is a moving, touching and emotional read.

Quotation from the book.

Author

“Every child is unique; the extent to which they are affected is also individual. If you are not living with autism, it is easy to miss the child and only see the diagnosis. The book was written in an attempt to demonstrate, although outwardly, these children may appear different; but inside—where it counts—they are the same as you or me. Children with autism love, have an ego, feelings which can be hurt, a sense of humour, and even a mischievous side.

The book was written in an attempt to demonstrate, although outwardly,
these children may appear different; but inside—where it counts—they
are the same as you or me.Children with autism love, have an ego,
feelings which can be hurt, a sense of humour, and even a mischievous side.”

§

Comments and order information:

Print quality is good. Illustrations are effective and well done. I highly recommend it to everyone.

If you’re interested in purchasing, Click here “The World According to August.”

Use this link for the Kindle version of “The World According to August.”

I want to follow this review with a poem thatwas inspired by the book:

Poem for an Autistic Child

A Tribute to August

from “The World According to August —

To soar on wings of eagles

to glide along the glade

to bounce and jump and whirl and twirl

to dream and search and sway.

He has so much in common

with you and me you see —

a bright and charming sweet young boy

who senses all with clarity.

To hear, to see and touch and smell,

he takes all in so well,

his self expression is unique

his feelings hard to sell.

We might whisper, he might yell

but one can never tell.

He likes himself and folks like him

and that works out quite well.

August has needs and we have ours,

life comes with give and take ―

love and comfort, peace and joy

needs all share, so we partake.

A smile, a doubt, a look askance

a wave, a nod, a sigh —

He needs hugs and love at times,

same as you and I.

He gazes on the sights nearby,

is stirred by beauty there.

A swan takes flight, a songbird sings,

if only he could fly.

Unspoken words may bite his tongue,

but thoughts within belie.

A word from Mom, a smile from Sis

unspoken things give him answers to why.

Show him love and friendship now

his joy you’ll never miss.

  Don’t ever leave just stay nearby,
he just might make you cry.

August is a special child

and August needs a friend.

August is a special child

And August is my friend.

a poem by Rich Weatherly, October 7, 2011

For more information about autism and “The World According to August – One Good Friend” by Sandy Westendorf  refer to http://purplebirch.com/books.html .

Sandy managed a team of behavioral specialists and is the mother of an autistic child. According to Sandy:

The book was written in an attempt to demonstrate, although outwardly,
these children may appear different; but inside—where it counts—they
are the same as you or me.Children with autism love, have an ego,
feelings which can be hurt, a sense of humour, and even a mischievous side.

I heartily encourage you to support research into autism by purchasing this book.  A percentage of the proceeds will be donated equally to support Canadian-American Research Consortium (Autism Research) and the International Society for Autism Research.

For more information about Sandra Westendorf, check her Purple Birch Publishing Website. For that you can click right here. 

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