Somebody, somewhere, declared April to be Autism Awareness Month. I’m all for it. We need to be more aware of it so that children are diagnosed early and accurately to make sure that they get the treatment they need.

What is Autism?

Autism is a neurological disorder that usually becomes apparent by the age of 3 if people know what to look for. Part of the problem in diagnosing autism is the wide range of possible behaviors and abilities. However, there is usually a distinct pattern of significant impairment in three major areas:

• Impairment in reciprocal social interaction. Children who are on the autism spectrum don’t get the give and take of conversation and sharing of experience. Even when very little, neurotypical kids will point to things that interest them so that others will see it too. They will babble back and forth, imitating conversation. Autistic kids seem to be in their own world, uninterested in sharing it with others or unable to understand that other people aren’t as interested as they are in their obsession of the moment. Higher-functioning kids with autism may come off as rude, clueless, or self-centered because of their apparent inability to read what is socially appropriate at any given time.
• Impairment in communication skills. Their language may be unusual, stilted, or limited. High-functioning kids on the spectrum may have large vocabularies but may use words incorrectly or idiosyncratically. Lower-functioning kids may not speak at all.
• Presence of stereotyped behaviors, interests, and activities.Spinning, flapping, and finger-flicking are common in young kids and even in some autistic adults. Many rock to comfort themselves. Children may develop an intense obsessive interest in just about anything. I’ve known kids who are walking encyclopedias about pirates or fishing or who know every detail of every one of the Star Wars movies. They can talk for hours about their “thing” but are unable to have even a brief conversation about almost anything else.Some of the more disabled kids with autism I’ve known have been obsessed with things such as different kinds of tires, ceiling fans or string. They are happiest when they can watch or play with their particular interest. High-functioning autistic adults may become experts in arcane academic or technical areas, again to the exclusion of almost everything else.

  In addition, many of these children show sensory processing disorders. They can be intensely over- or under-sensitive to sensory stimulation (lights, sounds, smells, or touch). Some are unable to stand the buzz of fluorescent lights or the smell of certain foods, the sensation of certain fabrics or changes in temperature, to name only a few examples. Some have a very high tolerance for pain. (A school program called me recently because a teenaged girl seemed to feel no pain when she pulled off fingernails.) Some can’t manage any discomfort at all. I know one preschooler who walks on tip-toe whenever he is barefoot because he can’t tolerate how grit feels on his feet.

Autism is associated with a known medical condition in only 10 to 20 percent of cases. It is thought to be genetic since 60 to 90 percent of identical twins both have it while in fraternal twins it is less than 5 percent. As yet, there is no genetic test or brain scan or medical test to use for diagnosis. We rely on observation and the experience of professionals.

Why Does the Prevalence Rate Keep Growing?

In my professional lifetime, the odds of a child having autism have kept growing. In the 1970s, the statistic worldwide was 4 in 10,000. Between 1985-1995, the number tripled to 12 in 10,000. The rate was estimated to be 1 in 155 by 2002; 1 in 110 in 2006 and 1 in 88 in 2008. Some studies are now suggesting that it afflicts 1 in 50 kids in the U.S.

What happened? Partly it’s about a change in the acceptance of autism as a genuine, distinct disorder. Partly it’s due to a change over time in the description of criteria and the number of criteria that need to be met to make a diagnosis.

When I was in graduate school in the early 1970s, we were using the DSM-II. Autism isn’t mentioned except as a subset of childhood schizophrenia. Frankly, back then, I’d never heard of it. When DSM-III came along in 1980, a section on infantile autism was added and the first effort was made to delineate criteria. It took until the DSM-IIIR in 1987 for autism disorder to appear with a well-articulated set of 16 criteria, 8 of which had to be present to warrant a diagnosis. By the time the DSM-IV (1994) and DSM-IVR (2000) came out, the number of criteria had been reduced to 12, with 6 being needed for a diagnosis. With each succeeding edition, mental health professionals became more aware of autism as a possible diagnosis.

At least some of the increase in prevalence is due to that awareness on the part of professionals. Some of it is probably because kids who at one time might have been diagnosed with psychosis or retardation or hyperactivity are now being assigned the diagnosis of autism. And some of it is due to the fact that parents and teachers have become much more attuned to the possibility that a child is on the autism spectrum, so evaluations are occurring at a much earlier age. Finally, it’s possible that there is something going on in our environment or in genetics that is causing an increase in the disorder. That last one remains a mystery.

What if You Suspect Your Child Has Autism?

With the increase in autism prevalence and awareness has come an increased sophistication in screening. A diagnosis of autism is rarely assigned before 15 to 18 months of age. If by then you suspect that your child isn’t developing as he or she should, you can first go to one of the many websites that have quizzes and checklists for the symptoms of autism for the age of your child. But please don’t go on the results of those websites alone. There are many reasons why a child may not be keeping up with peers. It’s just a good, if crude, first effort.

The next step is to ask your pediatrician to take a look at your web-based checklists and to decide if a referral to an autism screening team is advisable. There are early childhood interventions (EI) teams all over the U.S. who can make a more refined diagnosis and who can offer treatment if it is needed. If there is no EI team nearby, there is probably a diagnostic team in a mental health clinic or children’s hospital near you. An accurate diagnosis is essential. Diagnosis is what determines what types of treat may be the most helpful for your child.

Early Intervention Matters

There is no cure for autism but when children get intense and appropriate treatment early on, preferably before age 3, many can and do learn compensatory skills. Excellent programs provide physical, occupational and speech therapy as well as coaching in social and language skills for the child. They also provide coaching and support for parents so they can reinforce and continue the treatment at home. If there is no comprehensive program nearby, there is often a resource center connected with a school or with a medical center that can help families get the services the child needs.

Written by Kevin Stoddart, Lillian Burke, and Robert King, Asperger Syndrome in Adulthood is written for individuals within the field. While this does not diminish the utility of the book, it does limit its appeal.

Asperger Syndrome in Adulthood is written by academics for academics. It’s not light beach reading. That said, the information contained inside is useful for anyone looking to better understand the disorder. It is a solid starting point for learning about Asperger Syndrome.

A quick look at the three professionals’ resumes shows that they are highly qualified to write this sort of book. Stoddart is the founding director of The Redpath Centre and an adjunct professor at Factor-Inwentash Faculty of Social Work at the University of Toronto. Burke is a psychologist and the assistant director at The Redpath Centre. King has worked for more than two decades with multiple interdisciplinary teams supporting individuals with intellectual disabilities. He is also a consultant for several health centers, services and agencies.

Asperger Syndrome is not a new disorder, even by modern standards. However, its label is relatively new. The authors write:

“Reflecting our belief that individuals with social differences have always existed, it is acknowledged by most professionals that recognition of individuals who have problems interacting socially existed before the identification of the syndrome by Dr. Hans Asperger. Despite different names, very early papers by Schneider (1923), who discussed ‘affectionless psychopaths,’ and by Ssucherewa (1926; Wolff, 1996), who described ‘schizoid personality in childhood,’ provide evidence of this.”

Asperger Syndrome, like most disorders, has been around for quite some time. However, it has always been viewed through a murky lens. Even with a label attached to it, the average person still does not know what to make of it.

Autism resides on a spectrum, and anyone afflicted with Asperger Syndrome displays varying degrees of intensity. Since it is commonly mentioned in connection to children, many people do not fully appreciate how it can affect adults.

The first chapter introduces the disorder, as well as other Autism Spectrum Disorders found in adults. The second describes an assessment for Asperger Syndrome, and the third gives a lengthy overview of relevant mental health symptoms. The next four chapters build on what is discussed in the first three, getting more technical and potentially going beyond the interest levels of non-professionals and non-academics.

That is not a knock on Asperger Syndrome in Adulthood. The bottom line is that this is an academic book and it’s meant for that circle. That said, Asperger Syndrome in Adulthood is unquestionably readable and undeniably exhaustive. It’s a solid entry into a field that was certainly in need of it.

Asperger Syndrome in Adulthood: A Comprehensive Guide for Clinicians
By Kevin P. Stoddart, Lillian Burke, and Robert King
W. W. Norton & Co.: July 23, 2012
Hardcover, 350 pages
$32

Kennedy and Banks are mothers, as well as professionals who previously collaborated on the book The ADHD-Autism Connection, and each has multiple children who are twice exceptional.  “Twice exceptional” is a term that they address in the beginning of their book. They write that it is “a relatively recent term that refers to children who have dual ‘exceptionalities’—that is, exceptional gifts (creative, academic, intellectual, or physical abilities) along with a learning or developmental disability.”

Temple Grandin is perhaps one of the world’s most successful people with autism. She has her PhD in animal science and is both a professor and an author.

As they did with the term “twice exceptional,” the authors begin with a lot of contextual information to help explain the terms, intentions, and needs for writing this book. They go on to implore, as does Temple Grandin in the preface, that changes be made.  These twice exceptional (or 2e, as Kennedy and Banks come to say) children are falling through the cracks because their disabilities are being granted power over their abilities.

The book is organized into three sections. All three are equally important in helping a child with 2e: ‘Who They Are,’ ‘Why They’re Stuck,’ and finally, ‘How to Help Them.’ Since Kennedy and Banks are both mothers, they take care to explain that this is a book meant to help parents in a variety of ways.  This book is not just an offering of support and resources, but it also breaks down the issues of why these children are “stuck” in the first place.

Temple Grandin, as you may have already known from the HBO movie based on her life, has had great success cultivating her abilities despite having autism.  Kennedy and Banks mention that she is a perfect example of being “bright and not broken,” a goal they have for all children, 2e or not.  They believe that the success of each child will greatly help the world because these children can then feel good about what they can contribute, instead of being stuck on what they can’t do.Temple Grandin brings attention to how some children with autism introduce themselves, saying that they tell her their disorder first—showing that they define themselves by their limitations.

The authors give some context to these disorders by explaining that 2e kids today are tomorrow’s “Albert Einstein, John Couch Adams, Thomas Edison, Sir Isaac Newton,” and the list continues.  Many of these classic figures had symptoms that today may have been diagnosed as ADHD or autism. For example, Einstein didn’t speak until he was 3 and Gregor Mendel, who gave us the foundation for modern genetics, couldn’t pass the exam to qualify to teach high school.  Had these men been labeled with a disability, they may never have achieved their greatness, because they may have also defined themselves by limitations.

Kennedy and Banks also break down ways to help teachers and parents identify their child’s gifts.  They explain these disorders in a refocused way by giving supportive and caring definitions that require a deep understanding.  These new definitions were created by combining a parent’s care and understanding and the experienced intelligence of a professional in the field.

As mentioned, all the sections of this book are important for understanding the entire issue at hand, but the section on ‘Why They’re Stuck’ is extremely informative and explains exactly how and why the current system is not doing these children justice.  Particularly, they explain how important it is for parents to know the different debates in standardized testing.  This way, they can avoid falling into the trap of defining their child by these flawed systems of measurement.  I found this section to be the most intriguing because after you read it, it will be nearly impossible for you not to want to change the system.  Kennedy and Banks have certainly done their research, but they also show how to apply it in a practical way, making this book a great help to parents and professionals alike.

Finally, they talk about diagnosing and educating the whole child instead of just labeling one aspect of them.  This new type of diagnosis and education factors in all their needs and gifts, showing how to adapt it to individual children because, after all, we all have individual needs.  Most importantly, Kennedy and Banks keep reminding their readers that 2e children have so much so offer the world and they want to make that happen.  Also, if you want to do more exploration, they end with a long list of helpful additional resources.

Personally, they have convinced me that in an attempt to help people with disabilities, we have hurt them by labeling them.  This label can hurt them because if focuses all the attention on what they cannot do, instead of also exploring what they can do.  This book is truly inspiring and it shows that by simply changing our perception of these children, and then the testing and education that stems from that perception, we can help them become successful, contributing adults.  Perhaps they could even make history.

Bright Not Broken: Gifted Kids, ADHD, and Autism
By Diane M. Kennedy and Rebecca S. Banks
Jossey-Bass: September 13, 2011
Hardcover, 320 pages
$24.95

They may be diagnosed with complex disorders such as Autism, Asperger’s, Pervasive Developmental Disorders, Bipolar Disorder, Tourette’s, or Mental Retardation. All are challenging to identify reliably, and even more challenging to treat effectively. We can add the physical disabilities of blindness, deafness, and a multitude of serious medical disorders that strike children and significantly limit their ability to function.

Each of these disorders has books, websites, and national organizations devoted to them. Parents often know more about the specific disorder than any individual professional involved in treating the child because they devote hours to researching out all available information. The Internet has made much more available including the ability to contact other parents with similar concerns.

Yet, as I recently listened to a group of such parents share their pain and frustration, I could hear some common issues being expressed repeatedly: the need for parental support systems, the reality that in many situations nothing really works to resolve the challenges their children present, the lack of social opportunities for their children, the impact on marriage, the impact on siblings, and fears about the future.

Parent Support Groups

As I sat and listened to these parents share their painful stories, I felt particularly powerless. I had no magic solutions and rarely an idea that they hadn’t already heard from some other professional. Yet, as the meeting drew to a close they were so thankful! The process of sharing their struggles face-to-face with other parents who understood them best made a difference. Some actually exchanged phone numbers and planned to meet again.

The main plea was the need to have ongoing support groups. There was talk about the lack of respite from the 24/7 challenge of caring for these children. Finding someone to watch their child for a few hours so they could have time for personal, marital, or family activities was a universal challenge. The typical sitter lacks the skills and even if one lives near family, they too often lack the understanding or patience required to help. In fact extended family non-support was a key issue. Too often these parents are criticized by their own extended family for not being able to better manage the behavior of their child with severe special needs. The frequent result is avoiding attending family and community events.

These parents need a level of support that is difficult to give if you haven’t been in their shoes. The understanding that was shared within the group was very powerful. It was especially helpful because these parents are very isolated and despite information that may be available, still end up feeling as if their struggles are unique and represent their failures as parents.

But the emotional support and social connection was only part of the group’s value. These parents knew so much that they were terrific resources about the latest information as well as being able to share what strategies or services had proven helpful with their child. So there was a practical, informational aspect to the value of the group.

It was obvious in reflecting on this meeting that more community agencies need to commit to providing an opportunity for these focused parent support groups. Online chat rooms help but talking to other parents in a real room, especially parents who live in the area and can become a true personal connection, is essential to the coping ability of these parents.

Impact on Family

Children with severe special needs drain enormous amounts of time, energy, and money. Marital problems are reported to be present to a greater degree because of the lack of time for nurturing the marriage plus the frequent problem of parents disagreeing on what needs to be done for the child.

Another source of tension is that often one parent is more effective in managing the difficult behaviors. The reduced couple’s time is especially important because there is more that needs to be discussed and dealt with including the feelings of grief and disappointment that sometimes never get processed. The ability to learn to enjoy the positive aspects of the child and to take a more spiritual perspective about what all family members gain from having to address these challenges can only take place after having grieved the loss of what the parents had expected from that child at birth.

Sibling issues need attention. Parents and professionals alike often lose sight of the need to help siblings understand the problem that is affecting their brother or sister. Then there is the challenge of trying to reduce the jealousy that results when so much attention is focused on one child as well as the frequent limitations on doing common family activities. It is clear that siblings need an opportunity to voice their questions, concerns, and feelings.

A particularly important issue is helping them identify their negative feelings as normal and reduce the guilt that often complicates their behavior within the family and toward their sibling. Once again we are talking about the need for support groups. To learn that they are not alone in their situations and in their feelings is critical to a healthy attitude and the ability to cope. Communities need to provide these opportunities.

In Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, and the Meaning of Normal, author Kerry Cohen wants readers to know that autism isn’t a tragedy, a misfortune or a loss to be grieved. It is not a bleak, hopeless existence. She wants us to see past the disorder to what’s right in front of our faces: a beautiful child.

In her memoir, Cohen writes beautifully, achingly and honestly about how she and her husband grapple with their son Ezra’s development, autistic diagnosis and finding the right help. From the beginning, Cohen is turned off by the cold and callous evaluations and the rigid therapies professionals offer. During these sessions, Ezra, a happy and expressive child, becomes visibly confused and uncomfortable, while therapists curiously look on and continue prodding him.

Hoping to improve their lives, the family makes a cross-country move. Cohen also has another baby, a boy they name Griffin. But their move has the opposite effect, stressing both spouses and creating a palpable separation. Seeking out treatments for Ezra also takes a toll. Cohen’s husband sinks into a depression, and their marriage begins to unravel. Instead of turning to each other, they become more and more disconnected. He grows distant, and she pursues an affair. Still, they’re able to band together as parents, search for the best help for Ezra and continue being a close family.

Seeing Ezra will resonate with parents of special-needs kids, who can undoubtedly relate to the frustration, stress and overwhelm of wanting to help their children while protecting them and letting them be kids. Cohen regularly double-guesses her decisions and continuously feels torn between listening to her maternal instincts—wanting a happy, relaxed childhood for Ezra—and to the professionals who advocate for stringent treatments. She repeatedly questions whether forcing Ezra to conform to our standards and past his comfort zone is the right thing to do. Cohen writes:

[In a message board for special-needs parents] I begin to share my concerns about Ezra, about how I just want to accept him as he is, how I want him to be happy, to love life. A lot of parents, I learn, feel the same way. A lot feel those same hazy pressures that I do: We must do everything we can to make our children normal, to do something fast during the compressed “window of opportunity.” A lot, like me, want to ignore this notion that there is a brief window in which our children can be helped, but we are afraid to. We’re afraid our instincts might be wrong. We’re afraid that we really are failing our children if we don’t follow the path handed to us, one where all autistic children must participate in forty hours of behavioral therapy every week, receive chelation, and be made into something other than who they are…

Cohen describes Ezra’s development and because of his difficulty communicating, how helpless she feels not knowing what her son needs and wants; never truly knowing what he’s thinking. While he makes great progress some days, other days, it feels like taking several steps back. As Cohen writes:

With Ezra, though, growing up is so uncertain. There is nothing that tells us he will ever communicate easily or stop crying when someone sings “Twinkle, Twinkle, Little Star.” True, he has dropped tons of behaviors we worried he’d never lose. He’s grown comfortable with other kids and surprising noises. There was a time we worried he’d never talk, and now he does. There are plenty of skills, too, that we don’t know he has and then, all of a sudden, we see him doing them. When it comes to Ezra, we can’t look at timelines—as most parents can—and know basically when to expect something. We can’t assume that anything we do or make him do, like all therapies, will ever affect his development. As with most children on the spectrum, his development follows its own unwritten path. Skills will come, others won’t, and then they’ll disappear and come back. His development is like a magic show. Again and again I have to remind myself to stop trying to control it.

She talks about another struggle she continuously faces that parents will certainly relate to: the lack of ease. She writes:

I hate that I never have ease. I hate that while other mothers are easing through decisions for their child, are making holiday cookies and worrying over whether the snow boots are too small, or whether it’s time to move out of the crib and into a big-boy bed, I pore over schools within driving distance, trying to find one where my son can belong. I look for supplements and approaches to try and encourage my son to eat food. I lie in bed and wonder how my son will ever be okay in the world, how I can ever help him love who he is and have his needs met. I can never be easy. I can never be still. Always, I must be running, moving, searching, finding. Always, I am fighting against the unbearable default of failing my son.

Parents also will find comfort in knowing that they aren’t alone in navigating the range of emotions and challenges. And while this is a story of one boy and one family, Seeing Ezra demystifies autism and illustrates that while there are many difficulties, autism is not something to be feared. Sadly, in certain cases, the media portrays autistic people in a disparaging light, which perpetuates this idea. Cohen writes “…they encourage that notion in our society that autistic people are untenable, empty shells, that autism steals children from their parents like the Devil might.”

Seeing Ezra is a must-read for professionals in the mental health field, too. Again, Cohen recounts many experiences with detached and condescending therapists, who were oblivious to the fact that they weren’t helping in the least (rather they probably viewed Cohen as an uncooperative parent in deep denial). Reading this memoir will help professionals get a glimpse into a parent’s perspective of raising an autistic child, the challenges, frustrations and the immeasurable joys. And it’ll hopefully inspire professionals to be more sensitive, supportive, open and helpful. Cohen writes:

Yet it’s outrageous to judge any parent for their feelings, their convictions, for the ways they’ve found to cope with this alien world of being a special-needs family.

Ultimately, Cohen’s memoir tells the story of an exuberant little boy, who loves art, reads music, sings “Bohemian Rhapsody” in its entirety, makes videos on his computer, hugs and cuddles with his brother as their dad reads to them before bed, and is so much more than his diagnosis; and of a family that embraces Ezra for who he is and loves each other deeply and unconditionally. As Cohen writes, “There is no tragedy here.”

Still, it wasn’t until 1992 that AS became an official diagnosis in the International Classification of Diseases (ICD-10). Two years later, it became an official diagnosis in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV).

Asperger Syndrome is a developmental disorder. People with AS don’t have cognitive or language deficits. (If they do, they’re diagnosed with autism.) But they do have a difficult time interacting, communicating and connecting with others. They’re unable to pick up on social cues and express their emotions.

Often, they also reside on either extreme of the spectrum: Either they’re very orderly and “become unglued if things don’t go their way” or their days are in disarray, and they have a lot of difficulty with daily responsibilities, said Valerie Gaus, Ph.D, psychologist and author of Living Well on the Spectrum: How to Use Your Strengths to Meet the Challenges of Asperger Syndrome/High-Functioning Autism and Cognitive-Behavioral Therapy for Adult Asperger Syndrome.

The social deficits can get people with AS into trouble, Gaus said. That’s because of their “lack of understanding of the unwritten rules of social engagement.” Gaus noted that she’s heard of several scenarios where people with AS have gotten pulled over by police officers, and they just didn’t know how to behave and seemed suspicious or belligerent.

Clients with AS usually come to Gaus for one of two reasons: to help them with their social interactions (either to get along better with their spouse, co-workers or family or find a romantic partner or friends); or to get organized and effectively manage their time.

Gaus doesn’t view Asperger Syndrome as a disease. Instead, she believes it’s a “unique way of processing information” that creates not just vulnerabilities but “strengths that can help you succeed in life.” For instance, a person with AS might be “a very systematic thinker,” which makes it difficult to “interface with humans,” but also makes them a winning engineer, she said.

So when she works with clients, Gaus’s goal isn’t to eliminate AS, because this has made the person who they are, she said. Rather, it’s “to identify which Asperger’s symptoms are causing [the person] stress and to help them come up with solutions to overcome them.”

AS has received more attention in recent years, but there are still many myths that surround the syndrome. Below, Gaus helps demystify six of them.

1. Myth: Children with AS will grow out of it eventually.

Fact: Like ADHD, there’s a prevalent myth that Asperger Syndrome is strictly a childhood disorder that disappears after young adulthood. But AS is a lifelong condition. It does get better with treatment but never goes away.

2. Myth: Adults with AS don’t get married.

Fact: Even mental health professionals subscribe to this myth. An article in USA Today stated:

Forming close friendships and dating run counter to Asperger’s adults’ goals, colleague [Katherine Tsatsanis of the Yale Developmental Disabilities Clinic] says; [Ami Klin, head of the Yale Developmental Disabilities Clinic] says he has never known a parent with Asperger’s.

Bryna Siegel, director of the Autism Clinic at the University of California-San Francisco, concurs that an Asperger’s parent would be rare, and she knows of just one short-lived marriage.

The reality is that some adults do get married and have families — Gaus has worked with many of them — and some have never had a romantic relationship. According to Gaus, there’s a lot of variability in how Asperger’s manifests. (“There is a lot of room for variability in the DSM criteria.”)

“There isn’t one profile that I could describe because personality affects how the person presents.” Some people with AS are super shy, while other are “chatterboxes.” Comorbidity is another reason adults may look different. Gaus often sees clients with both Asperger’s and anxiety issues or mood disorders. It’s hard to know what the person was like before they started struggling with the co-occurring disorder.

Barbara Boroson holds an undergraduate degree in creative writing from Cornell and a masters degree in social work from Columbia University.  She has worked in autism spectrum education for 20 years in clinical, administrative and advisory capacities. She currently works as a consultant and supports teachers and school districts as they integrate their students on the spectrum into mainstream environments.  Her stated goal is in the development of inclusive classrooms where all students can learn and grow. 

Her writing is clear and accessible. It gives her readers an understanding of the complexity of ASD by using concrete examples and provides the instructor with the tools and techniques that help steer students towards success.  Autism Spectrum Disorders in the Mainstream Classroom: How to Reach and Teach Students with ASDs is highly recommended for all instructors and families wishing to teach and better understand individuals with ASDs.

The autistic spectrum, also called autism spectrum disorders is characterized by widespread abnormalities of social interactions and communication, as well as restricted interests and repetitive behavior.  The five forms of ASD are classic autism, Aspergerʼs syndrome, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), Rett syndrome and Childhood Disintegrative Disorder.  The number of reported cases of autism increased dramatically in the 1990s and early 2000s.  This increase is largely the result of changes in diagnostic practices, availability of services and public awareness, although current research shows that unidentified environmental risk factors cannot be ruled out. 

Classic autism is a disorder of neural development and affects information processing in the brain by altering how neurons and their synapses connect and organize in ways not yet well understood.  While autism has a strong genetic basis, the genetics are complex and it remains unclear whether any of the disorders in the spectrum are explained more by rare mutations or rare combinations of genetic variants. 

Controversies surround other proposed environmental causes of ASD, such as pesticides, heavy metals or childhood vaccines, but no convincing scientific evidence has been presented for any of these proposed causes.  Borosonʼs work is valuable in that it offers tested preventive strategies that cooperatively build a classroom setting that includes students with ASDs.

Boroson begins by defining and explaining many of the terms and acronyms encountered while helping students across the autism spectrum.  She gives us the ill-defined and yet textbook characterization of ASDs stated by the U.S. Department of Health and Human Servicesʼ Center for Disease Control and Prevention Autism Information Center (2009):

[Autism spectrum disorders] include autistic disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS, including atypical autism), and Aspergerʼs Syndrome. These conditions all have some of the same symptoms, but they differ in terms of when the symptoms start, how severe they are, and the exact nature of the symptoms. The three conditions, along with Rett Syndrome and childhood disintegrative disorder, make up the broad diagnosis category of pervasive developmental disorders.

She points out this definition is remarkably consistent with the similarly befuddling explanation found in the current version of the APAʼs (American Psychiatric Associationʼs) Diagnostic and Statistical Manual (DSM) IV (1994).  Boroson clears away this confusion by writing, “In my work, I have encountered many children on the autism spectrum whose precise address along the spectrum is unclear or inconsistent.  And what Iʼve discovered is that the name of their diagnostic subtype does not dictate the details of their functioning, education or identity.”

Borosonʼs understanding, that sees each student as a unique human with his or her own strengths and weaknesses, patterns of action and reaction, potential and dreams, provides her book with multiple, detailed and realistic strategies that gives a deeper understanding of ASDs and thereby makes it a valuable reference.

Boroson holds off discussing the presentation of curriculum to children with ASDs until the last chapter and presents to us first several preventive and responsive strategies.  As she says, “Preventive strategies will be the most important tools in your box, both philosophically and practically.  They will guide you toward thinking in a proactive, positive way.  They will help you keep the heat down and keep problematic situations from occurring and recurring.  Thatʼs important because once a cycle of reaction has begun, it can be especially difficult or truly impossible to recover the day for your students on the spectrum.” 

Her strategies enable the instructor to look past the behavior of students with ASD to see what triggers their anxiety or anchors their comfort and to incorporate these unique specifics into the classroom.  For example, by using information gained from families, counselors and previous teachers instructors may prepare a toolbox that contains individualized affirmations, calming cues, and comfort objects that offer support and aid for the self-regulation of students on the spectrum. She looks at the many contextual challenges a student with ASD faces that involve anxiety, sensation, socialization, engagement, regulation, organization and communication and offers several strategies that can be tailored for these individuals.

Barbara Borosonʼs Autism Spectrum Disorders in the Mainstream Classroom: How to Reach and Teach Students with ASDs engages the reader with a well-thought-out discussion of how unique individuals on the autistic spectrum differ in their abilities and how these differences may be incorporated in reaching them and teaching them.  Her work is lucid and illuminates parts of my own life with students and friends with ASDs.  I highly recommend that her book be read cover to cover and kept as a reference on the bookshelf of anyone wishing to bring about Borosonʼs stated goal of developing inclusive classrooms where all students can learn and grow.

Autism Spectrum Disorders in the Mainstream Classroom: How to Reach and Teach
Students with ASDs
By Barbara Boroson
Scholastic Teaching Resources: June 1, 2011
Paperback, 224 pages
$24.99

Whatever the diagnosis, Attention Deficit Disorder (with or without Hyperactivity), an auditory processing disorder, Dyslexia, Aspergers, etc., our kids do better in school when we parents do our share. As stressful as it can be to reinforce learning at home, as difficult as it is to add regular contact with the school to our schedules, as much as we’d like to just let the teachers take on the challenges of our kids for some part of the day, our children are more likely to get more out of the school year if we’re enthusiastically involved. Here are some helpful reminders from the “pros” — parents of children with learning disabilities whose kids are generally doing well in school.

At School

1. Provide the teacher with adequate information about your child at the beginning of the school year. No, it’s not wise to withhold information on the grounds that the teacher might be unduly influenced by it. Withholding information only means that the teacher isn’t prepared for your child’s needs or personality. Misinterpretations and mistakes may be made that will take weeks or months to undo.

2. If the child is in therapy or is receiving special services of any kind, sign releases so the professionals can talk to each other. Outcomes are generally far better when left hands and right hands know what each other is doing

3. Share any methods you have found to be effective in keeping your child happy, calm, and on task. The teacher will be grateful for it.

4. Set up a communication book and use it. Have your child carry a small notebook in his backpack. Before your child heads to school, write a short note about any issues or events that might have impact at school. Knowing about a sleepless night, the arrival of grandparents for a visit, conflict at home, etc., can help a teacher be more patient if there are challenging behaviors. Ask the teacher to return the favor by putting a sentence or two in the book at the end of the school day to keep you in the loop about achievements and challenges.

5. Be a good partner: Sign the education plan in a timely way. If you have objections to the plan, be active and timely in negotiating changes. Be aware that while a plan is unfinished, your child isn’t necessarily getting the help she needs.

6. Volunteer to help in the classroom when you can. But make sure your help is really helpful. Your presence may be distracting to your child. If that’s the case, there are other ways to help out. Consult with the classroom teachers. Sometimes, for example, they need help after school, setting up materials for lessons the next day. Sometimes it’s helpful to have someone take a couple of kids at a time to the library to work on a project so that the teacher can focus on the rest of the students.

7. Yes, you need to be your child’s best cheerleader, mediator, and advocate. But do your best to maintain a reasonable balance between your advocacy for your own child’s needs and some compassion for the teacher who is trying to teach all of the children in the class.

8. Get involved with a parent advisory committee (PAC) or parents’ support group. Other parents are the best sources of information and support. Being involved will help keep you informed about school-wide issues. If class sizes are too big or your school is under-resourced for educating children with learning disabilities, your collective voice is more powerful than any one parent can be.

At Home

1. Kids with learning disabilities need organization even more than other kids. External structure helps them feel safe when their internal ability to structure themselves is unreliable. Take the time the night before to help your child make sure everything she needs for school the next day is in that backpack to prevent morning panic. Establishing this habit is a skill that will help her throughout life. Set up a place where supplies for doing homework are readily available. A child who is already stressed about doing homework will only get more worked up if he has to spend half an hour looking for a ruler.

2. Many schools start introducing “homework” as early as kindergarten to get students used to the idea that there is an expectation that they will do some school work at home. In the early grades, it is usually something like a worksheet that doesn’t take much time. Help the school help your child develop the habit of doing some quiet academic activity after school each day. No homework? Stay in the routine. Use the time for making a picture for Grandma or for practicing an academic skill like counting money, telling time, or reading. Keep it as enjoyable as you can. The routine around homework time, even if it is only for 10 minutes a day, will only stay stable if it is regular, predictable, and nonnegotiable.

3. Don’t immediately take your child’s side if there are complaints about the teacher. Sometimes kids personalize their anxiety about school by picking on their teacher. Sometimes they are right that the teacher doesn’t like them or isn’t helping enough. You won’t know until you’ve had a calm and reasonable conversation. Meet with the teacher with an open mind and heart. You both have the same agenda: You both want your child to succeed.

4. If your child is taking medications, make sure to follow the protocol as exactly as humanly possible. Giving medication too late or too early may not have impact at home but may have consequences in school the next day. Be sure to note any medication changes in the communication log so the teacher is aware.

5. Make it clear to your child that school attendance is nonnegotiable unless he is sick or there are appointments that can’t be done after school. It’s not helpful to the atmosphere at home or to the child’s attitude about school if there is an argument about going to school every morning. Simply tell your child that adults have work and kids have school each day. End of story.

Good home-school communication and collaboration are the keys to helping our children with learning disabilities or differences manage the classroom environment and be a success in school. By doing our part, we can do a great deal to set a good school year in motion.

A recent survey showed that 82 percent of patients with PTSD who were assigned a dog had a decrease in symptoms, and 40 percent had a decrease in the medications they had to take.” –Dr. Melisa Kaime, director of the Congressionally Directed Medical Research Program (CDMRP)

• A study presented at the 2006 annual conference of the Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) investigated whether people with severe disabilities who use service dogs are less dependent on family and friends to carry out activities of daily living than people with similar disabilities without service dogs. Subjects who had service dogs used approximately 4.3 hours per week less assistance from family and friends than their counterparts. –Robert Milan, Shirley Fitzgerald, Diane Collins, Amanda Reinsfelder, and Michelle Sporner

• A study with the Texas Hearing and Service Dogs (THSD) assessed the benefits of the placement of service dogs with persons with mobility impairments. Participants reported that their service dogs had a positive effect on going out in public, feeling needed, feeling independent, and safety. Further, respondents reported that more people approached them when in public. Responses from the participants who had already had a service dog for longer periods of time substantiated the positive effects reported by the group that responded both before and after placement of a dog. Self‐esteem, as measured by the Rosenberg Self‐Esteem Scale, was enhanced significantly from before to after placement of a service dog. Family caregivers also benefited by being able to pursue other activities and by having more peace of mind. –Diana Rintala, Natalie Sachs-Ericsson, and Karen Hart

• A cross-sectional study published in the journal “Disability and Rehabilitation: Assistive Technology” examined whether partnering with service dogs influenced psychosocial well-being and community participation of adult individuals using wheelchairs or scooters. Of participants with progressive conditions, those with service dogs demonstrated significantly higher positive affect scores than comparison group participants. Among those with clinical depression, service dog partners scored significantly higher in positive affect. –D.M. Collins, Shirley Fitzgerald, Natalie Sach-Ericsson, M. Scherer, R.A. Cooper, M.L. Boninge

You get the idea. Trained service dogs are not only aids to psychiatric illnesses, but any kind of disability, from visual impairment to autism.

One of the more touching stories I’ve read regarding heroic dogs is published in a new, intriguing book, A Dog Named Slugger, by Leigh Brill. In her prologue, she shares a story that condenses all the studies above in a heartfelt expression of what these creatures can do for both body and mind, and the transformative power of their attention and devotion. It makes for a great starting point for anyone considering investing in a trained service dog:

My hands were trembling again. I needed to get a quarter out of my purse, but my quivering fingers made the task feel as intricate as neurosurgery. It’s always been that way with cerebral palsy—sometimes I just shake. I can’t help it. Still, the tired store clerk waiting at the counter in front of me didn’t understand this. She sighed, clearly wishing I would hurry up and pay for my purchase. I would have liked to be able to do that.

At last I grasped the quarter. I started to hand it to the clerk, and my fingers slipped. With a familiar flat plink, the coin hit the floor and rolled past the purple metal legs of my wheelchair. It was far beyond my reach now, but I knew what to do. I spoke softly to the companion who was standing attentively at my side, and he did what I could not. He retrieved the wayward quarter and put it carefully on the counter before taking his place once more. I smiled when he did this. Now the tired clerk was smiling too. “How amazing!” she exclaimed. “I never knew a dog could do that!”

My Labrador, Slugger, flicked his tongue across his jowls as if to remove the taste of the quarter. He was a highly trained service dog; for him, scooping a fallen coin into his mouth—and then spitting it out on command—was routine. Slugger was accustomed to retrieving anything that slipped from my grasp. My canine partner also carried my belongings, fetched my telephone, and opened heavy doors for me. His unwavering devoting brought me confidence and joy. With Slugger by my side, I discovered the life-changing power of unconditional love. And I learned that even the most formidable challenges can offer something good.

Her last two sentences sum up the healing powers of our canine friends: they offer unconditional love and teach their owners the hidden benefits of debilitating illnesses. And as a result, many regain confidence and joy.

To visit Leigh Brill’s website, click here.

Photo courtesy of http://www.kptv.com.

1. Qualitative impairment in social interaction, as manifested by at least two of the following:
   • Marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
   • Failure to develop peer relationships appropriate to developmental level
   • A lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
   • lack of social or emotional reciprocity
2. Restricted repetitive & stereotyped patterns of behavior, interests and activities
3. The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.
4. There is no clinically significant general delay in language
5. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.

They are often physically awkward and socially tactless.

You’ve probably known quite a few. Maybe they are even in your family. There’s that brilliant professor you had in college who looked at his desk the entire time he was talking to you and whose office was so overflowing with stuff there was nowhere for a visitor to sit. How about your brother-in-law the mechanic, whose work is superb but who insists on describing in minute detail exactly what he did to fix your car — and doesn’t seem to notice all your hints that you’re trying to leave already! What about your uncle or cousin or the sister of your best friend who is so socially awkward that you squirm with discomfort whenever they show up at an event, wondering what they’ll do next to embarrass themselves?

They are often physically awkward and socially tactless. They seem to be perfectionists but often live in chaos. They know more about some obscure or highly technical subject than seems possible — and go on and on about it. They may seem to lack empathy, and are often accused of being stubborn, selfish, or even mean. They can also be extremely loyal, sometimes painfully honest, highly disciplined and productive in their chosen field, and expert at whatever they decide to be expert at. They are the Aspies, adults with Asperger’s Syndrome.

The number of adults with Aspergers is still difficult to determine. The syndrome wasn’t even officially acknowledged in the DSM until 1994, even though it was described by Hans Asperger in 1944. The result? Many older adults weren’t diagnosed — or helped — as children. Teachers found them exasperating because they were so disorganized and uneven in their academic performance despite often being clearly bright. Other kids considered them weird and either bullied them or ignored them. As adults, they are only now discovering that there is a reason they’ve had difficulties with relationships their entire lives.

For many, having a diagnosis is a relief.

“I never could figure out what other people want,” says Jerome, one of my Aspie clients. “People seem to have some kind of code for getting along that is a mystery to me.”

Jerome is a brilliant chemist. He has the respect of his colleagues but he knows that he’s not well-liked. The finely tuned intuition he uses to do research breaks down completely in relationships.

“I know I’m well-regarded in my work. As long as we’re talking about a research problem, everything is fine. But as soon as people start doing that small talk stuff, I’m lost. It’s good to have a name for it. At least I know there’s a reason.”

Jerome is now starting to put the same intelligence he uses in his lab to learning better social skills. For him, it’s an academic problem to solve. Like many other Aspies, he wants to get along and have friends. He’s highly motivated to learn the “rules” most people take for granted. He just never understood what those rules were. Having the diagnosis has given him new energy for the project.

The press coverage of the syndrome of the last several years has been very helpful as well.

“I was working on a highly technical engineering project with a new guy last week. In the middle the morning, he put down his pencil, looked at me and said, “You have Aspergers, don’t you.”

Ted was explaining a recent encounter to me. “I got real nervous, thinking he was going to leave.”

“What did you say?” I asked.

“Well. I know now that’s my problem so I just said he was right. And you know what he said? He said, ‘I thought so’ and told me I could relax because he works with another guy who has the same thing. We had a great morning solving the problem. That wouldn’t have happened even a few years ago. I would have upset him somehow without understanding why. He would have gone back to his company thinking I was some kind of jerk. Things are just better now that there’s some understanding out there.”

Having the diagnosis has also saved more than a few marriages. Now that the kids are grown, Judy was ready to separate from her husband of 27 years when she first came to therapy.

“If Al and Tipper Gore could do it after 40 years of marriage, I figured I could manage it too. I don’t know what their problems were but I was just exhausted. I felt like I’d been single-parenting our two kids forever. Actually, I felt like I had three kids. Most of my friends couldn’t figure out what I saw in a guy who could only talk about one thing and who would rudely disappear in the middle of a social evening. He never seemed to be able to understand any of our feelings. Our finances were always a mess because he would lose track of bills. Yes, he was really sweet to me in our private life and he’s always been great about doing things like building the kids a tree house — that was really, really cool. But it became harder and harder to see that as a fair exchange for all the times I had to smooth things over because of something he did or didn’t do that bothered someone.

Then my daughter emailed me an article about Aspergers. It changed everything. I realized he wasn’t deliberately making life so hard. He couldn’t help it. As soon as he took an Aspie quiz online, he saw it was true. He does love us. He didn’t want the family to fall apart. He went right out and found a therapist who works with adults with Aspergers. He’s far from perfect but he’s honestly trying. He’s even apologized to the kids for not being more involved while they were growing up. I can’t ask for more than that.”

A diagnosis is primarily used to drive treatment decisions and to make it easier for clinical people to communicate with each other. But in cases like these, it can also be an enormous comfort to the individual and their families. As long as someone with Aspergers feels like they are being blamed or criticized for something they don’t even understand, they can only be defensive or bewildered. When the people around them feel offended or disrespected, they can only get exasperated, argue, or write them off. But when the thing that makes a relationship difficult is named and understood, it becomes a problem that can be worked on together. That shift can change everything.

Many others with ASD are capable of employment in sheltered workshops under the supervision of managers trained in working with persons with disabilities. A nurturing environment at home, at school, and later in job training and at work, helps persons with ASD continue to learn and to develop throughout their lives.

The public schools’ responsibility for providing services ends when the person with ASD reaches the age of 22. The family is then faced with the challenge of finding living arrangements and employment to match the particular needs of their adult child, as well as the programs and facilities that can provide support services to achieve these goals. Long before your child finishes school, you will want to search for the best programs and facilities for your young adult. If you know other parents of adults with autism, ask them about the services available in your community. If your community has little to offer, serve as an advocate for your child and work toward the goal of improved employment services. Research the resources listed in the back of this brochure to learn as much as possible about the help your child is eligible to receive as an adult.

Living Arrangements for the Adult with Autism

Independent living. Some adults with ASD are able to live entirely on their own. Others can live semi-independently in their own home or apartment if they have assistance with solving major problems, such as personal finances or dealing with the government agencies that provide services to persons with disabilities. This assistance can be provided by family, a professional agency, or another type of provider.

Living at home. Government funds are available for families that choose to have their adult child with ASD live at home. These programs include Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid waivers, and others. Information about these programs is available from the Social Security Administration (SSA). An appointment with a local SSA office is a good first step to take in understanding the programs for which the young adult is eligible.

Foster homes and skill-development homes. Some families open their homes to provide long-term care to unrelated adults with disabilities. If the home teaches self-care and housekeeping skills and arranges leisure activities, it is called a“skill-developmen” home.

Supervised group living. Persons with disabilities frequently live in group homes or apartments staffed by professionals who help the individuals with basic needs. These often include meal preparation, housekeeping, and personal care needs. Higher functioning persons may be able to live in a home or apartment where staff only visit a few times a week. These persons generally prepare their own meals, go to work, and conduct other daily activities on their own.

Long-term care facilities. This alternative is available for those with ASD who need intensive, constant supervision.

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

The medications used are those that have been developed to treat similar symptoms in other disorders. Many of these medications are prescribed “off-label.” This means they have not been officially approved by the U.S. Food and Drug Administration (FDA) for use in children, but the doctor prescribes the medications if he or she feels they are appropriate for your child. Further research needs to be done to ensure not only the efficacy but the safety of psychotropic agents used in the treatment of children and adolescents.

On October 6, 2006 the U.S. Food and Drug Administration (FDA) approved risperidone (generic name) or Risperdal (brand name) for the symptomatic treatment of irritability in autistic children and adolescents ages 5 to 16. The approval is the first for the use of a drug to treat behaviors associated with autism in children. These behaviors are included under the general heading of irritability, and include aggression, deliberate self-injury and temper tantrums.

Olanzapine (Zyprexa) and other antipsychotic medications are used “off-label” for the treatment of aggression and other serious behavioral disturbances in children, including children with autism. Off-label means a doctor will prescribe a medication to treat a disorder or in an age group that is not included among those approved by the FDA. Other medications are used to address symptoms or other disorders in children with autism. Fluoxetine (Prozac) and sertraline (Zoloft) are approved by the FDA for children age 7 and older with obsessive-compulsive disorder. Fluoxetine is also approved for children age 8 and older for the treatment of depression.

Fluoxetine and sertraline are antidepressants known as selective serotonin reuptake inhibitors (SSRIs). Despite the relative safety and popularity of SSRIs and other antidepressants, some studies have suggested that they may have unintentional effects on some people, especially adolescents and young adults.

In 2004, after a thorough review of data, the Food and Drug Administration (FDA) adopted a “black box” warning label on all antidepressant medications to alert the public about the potential increased risk of suicidal thinking or attempts in children and adolescents taking antidepressants. In 2007, the agency extended the warning to include young adults up to age 25. A “black box” warning is the most serious type of warning on prescription drug labeling. The warning emphasizes that patients of all ages should be closely monitored, especially during the initial weeks of treatment, for any worsening depression, suicidal thinking or behavior, or any unusual changes in behavior such as sleeplessness, agitation, or withdrawal from normal social situations.

A child with autism may not respond in the same way to medications as typically developing children. It is important that parents work with a doctor who has experience with children with autism. A child should be monitored closely while taking a medication. The doctor will prescribe the lowest dose possible to be effective. Ask the doctor about any side effects the medication may have and keep a record of how your child responds to the medication. It will be helpful to read the “patient insert” that comes with your child’s medication. Some people keep the patient inserts in a small notebook to be used as a reference. This is most useful when several medications are prescribed.

Anxiety and depression. The selective serotonin reuptake inhibitors (SSRI’s) are the medications most often prescribed for symptoms of anxiety, depression, and/or obsessive-compulsive disorder (OCD). Only one of the SSRI’s, fluoxetine, (Prozac®) has been approved by the FDA for both OCD and depression in children age 7 and older. Three that have been approved for OCD are fluvoxamine (Luvox®), age 8 and older; sertraline (Zoloft®), age 6 and older; and clomipramine (Anafranil®), age 10 and older. Treatment with these medications can be associated with decreased frequency of repetitive, ritualistic behavior and improvements in eye contact and social contacts. The FDA is studying and analyzing data to better understand how to use the SSRI’s safely, effectively, and at the lowest dose possible.

Behavioral problems. Antipsychotic medications have been used to treat severe behavioral problems. These medications work by reducing the activity in the brain of the neurotransmitter dopamine. Among the older, typical antipsychotics, such as haloperidol (Haldol®), thioridazine, fluphenazine, and chlorpromazine, haloperidol was found in more than one study to be more effective than a placebo in treating serious behavioral problems. However, haloperidol, while helpful for reducing symptoms of aggression, can also have adverse side effects, such as sedation, muscle stiffness, and abnormal movements.

Placebo-controlled studies of the newer“atypica” antipsychotics are being conducted on children with autism. The first such study, conducted by the NIMH-supported Research Units on Pediatric Psychopharmacology (RUPP) Autism Network, was on risperidone (Risperdal®). Results of the 8-week study were reported in 2002 and showed that risperidone was effective and well tolerated for the treatment of severe behavioral problems in children with autism. The most common side effects were increased appetite, weight gain and sedation. Further long-term studies are needed to determine any long-term side effects. Other atypical antipsychotics that have been studied recently with encouraging results are olanzapine (Zyprexa®) and ziprasidone (Geodon®). Ziprasidone has not been associated with significant weight gain.

Seizures. Seizures are found in one in four persons with autism spectrum disorders (ASD), most often in those who have low IQ or are mute. They are treated with one or more of the anticonvulsants. These include such medications as carbamazepine (Tegretol®), lamotrigine (Lamictal®), topiramate (Topamax®), and valproic acid (Depakote®). The level of the medication in the blood should be monitored carefully and adjusted so that the least amount possible is used to be effective. Although medication usually reduces the number of seizures, it cannot always eliminate them.

Inattention and hyperactivity. Stimulant medications such as methylphenidate (Ritalin®), used safely and effectively in persons with attention deficit hyperactivity disorder, have also been prescribed for children with autism. These medications may decrease impulsivity and hyperactivity in some children, especially those higher functioning children.

Several other medications have been used to treat ASD symptoms; among them are other antidepressants, naltrexone, lithium, and some of the benzodiazepines such as diazepam (Valium®) and lorazepam (Ativan®). The safety and efficacy of these medications in children with autism has not been proven. Since people may respond differently to different medications, your child’s unique history and behavior will help your doctor decide which medication might be most beneficial.

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

Before you make decisions on your child’s treatment, you will want to gather information about the various options available. Learn as much as you can, look at all the options, and make your decision on your child’s treatment based on your child’s needs. You may want to visit public schools in your area to see the type of program they offer to special needs children.

Guidelines used by the Autism Society of America include the following questions parents can ask about potential treatments:

• Will the treatment result in harm to my child?
• How will failure of the treatment affect my child and family?
• Has the treatment been validated scientifically?
• Are there assessment procedures specified?
• How will the treatment be integrated into my child’s current program? Do not become so infatuated with a given treatment that functional curriculum, vocational life, and social skills are ignored.

The National Institute of Mental Health suggests a list of questions parents can ask when planning for their child:

• How successful has the program been for other children?
• How many children have gone on to placement in a regular school and how have they performed?
• Do staff members have training and experience in working with children and adolescents with autism?
• How are activities planned and organized?
• Are there predictable daily schedules and routines?
• How much individual attention will my child receive?
• How is progress measured? Will my child’s behavior be closely observed and recorded?
• Will my child be given tasks and rewards that are personally motivating?
• Is the environment designed to minimize distractions?
• Will the program prepare me to continue the therapy at home?
• What is the cost, time commitment, and location of the program?

Among the many methods available for treatment and education of people with autism, applied behavior analysis (ABA) has become widely accepted as an effective treatment. Mental Health: A Report of the Surgeon General states,“Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior.”

The basic research done by Ivar Lovaas and his colleagues at the University of California, Los Angeles, calling for an intensive, one-on-one child-teacher interaction for 40 hours a week, laid a foundation for other educators and researchers in the search for further effective early interventions to help those with ASD attain their potential. The goal of behavioral management is to reinforce desirable behaviors and reduce undesirable ones.

An effective treatment program will build on the child’s interests, offer a predictable schedule, teach tasks as a series of simple steps, actively engage the child’s attention in highly structured activities, and provide regular reinforcement of behavior. Parental involvement has emerged as a major factor in treatment success. Parents work with teachers and therapists to identify the behaviors to be changed and the skills to be taught. Recognizing that parents are the child’s earliest teachers, more programs are beginning to train parents to continue the therapy at home.

As soon as a child’s disability has been identified, instruction should begin. Effective programs will teach early communication and social interaction skills. In children younger than 3 years, appropriate interventions usually take place in the home or a child care center. These interventions target specific deficits in learning, language, imitation, attention, motivation, compliance, and initiative of interaction. Included are behavioral methods, communication, occupational and physical therapy along with social play interventions. Often the day will begin with a physical activity to help develop coordination and body awareness; children string beads, piece puzzles together, paint, and participate in other motor skills activities. At snack time the teacher encourages social interaction and models how to use language to ask for more juice. The children learn by doing. Working with the children are students, behavioral therapists, and parents who have received extensive training. In teaching the children, positive reinforcement is used.

In evaluating a child, clinicians rely on behavioral characteristics to make a diagnosis. Some of the characteristic behaviors of autism spectrum disorders (ASD) may be apparent in the first few months of a child’s life, or they may appear at any time during the early years. For the diagnosis, problems in at least one of the areas of communication, socialization, or restricted behavior must be present before the age of 3. The diagnosis requires a two-stage process. The first stage involves developmental screening during “well child” check-ups; the second stage entails a comprehensive evaluation by a multidisciplinary team.

Autism Screening

A “well child” check-up should include a developmental screening test. If your child’s pediatrician does not routinely check your child with such a test, ask that it be done. Your own observations and concerns about your child’s development will be essential in helping to screen your child. Reviewing family videotapes, photos, and baby albums can help parents remember when each behavior was first noticed and when the child reached certain developmental milestones.

Several screening instruments have been developed to quickly gather information about a child’s social and communicative development within medical settings. Among them are the Checklist of Autism in Toddlers (CHAT), the modified Checklist for Autism in Toddlers (M-CHAT),11 the Screening Tool for Autism in Two-Year-Olds (STAT), and the Social Communication Questionnaire (SCQ) (for children 4 years of age and older).

Some screening instruments rely solely on parent responses to a questionnaire, and some rely on a combination of parent report and observation. Key items on these instruments that appear to differentiate children with autism from other groups before the age of 2 include pointing and pretend play. Screening instruments do not provide individual diagnosis but serve to assess the need for referral for possible diagnosis of ASD. These screening methods may not identify children with mild autism, such as those with high-functioning autism or Asperger syndrome.

During the last few years, screening instruments have been devised to screen for Asperger syndrome and higher functioning autism. The Autism Spectrum Screening Questionnaire (ASSQ),14 the Australian Scale for Asperger’s Syndrome, and the most recent, the Childhood Asperger Syndrome Test (CAST), are some of the instruments that are reliable for identification of school-age children with Asperger syndrome or higher functioning autism. These tools concentrate on social and behavioral impairments in children without significant language delay.

If, following the screening process or during a routine “well child” check-up, your child’s doctor sees any of the possible indicators of ASD, further evaluation is indicated.

The Diagnostic Evaluation of Autism

The second stage of diagnosis must be comprehensive in order to accurately rule in or rule out an ASD or other developmental problem. This evaluation may be done by a multidisciplinary team that includes a psychologist, a neurologist, a psychiatrist, a speech therapist, or other professionals who diagnose children with autism.

Because ASDs are complex disorders and may involve other neurological or genetic problems, a comprehensive evaluation should entail neurologic and genetic assessment, along with in-depth cognitive and language testing. In addition, measures developed specifically for diagnosing autism are often used. These include the Autism Diagnosis Interview-Revised (ADI-R)17 and the Autism Diagnostic Observation Schedule (ADOS-G).

The ADI-R is a structured interview that contains over 100 items and is conducted with a caregiver. It consists of four main factors—the child’s communication, social interaction, repetitive behaviors, and age-of-onset symptoms. The ADOS-G is an observational measure used to “press” for socio-communicative behaviors that are often delayed, abnormal, or absent in children with ASD.

Still another instrument often used by professionals is the Childhood Autism Rating Scale (CARS). It aids in evaluating the child’s body movements, adaptation to change, listening response, verbal communication, and relationship to people. It is suitable for use with children over 2 years of age. The examiner observes the child and also obtains relevant information from the parents. The child’s behavior is rated on a scale based on deviation from the typical behavior of children of the same age.

Two other tests that should be used to assess any child with a developmental delay are a formal audiologic hearing evaluation and a lead screening. Although some hearing loss can co-occur with ASD, some children with an autism spectrum disorder may be incorrectly thought to have such a loss. In addition, if the child has suffered from an ear infection, transient hearing loss can occur. Lead screening is essential for children who remain for a long period of time in the oral-motor stage in which they put any and everything into their mouths. Children with an autistic disorder usually have elevated blood lead levels.

Sensory Problems

When children’s perceptions are accurate, they can learn from what they see, feel, or hear. On the other hand, if sensory information is faulty, the child’s experiences of the world can be confusing. Many ASD children are highly attuned or even painfully sensitive to certain sounds, textures, tastes, and smells. Some children find the feel of clothes touching their skin almost unbearable. Some sounds—a vacuum cleaner, a ringing telephone, a sudden storm, even the sound of waves lapping the shoreline—will cause these children to cover their ears and scream.

In ASD, the brain seems unable to balance the senses appropriately. Some ASD children are oblivious to extreme cold or pain. An ASD child may fall and break an arm, yet never cry. Another may bash his head against a wall and not wince, but a light touch may make the child scream with alarm.

Mental Retardation

Many children with autism spectrum disorders have some degree of mental impairment. When tested, some areas of ability may be normal, while others may be especially weak. For example, a child with ASD may do well on the parts of the test that measure visual skills but earn low scores on the language subtests.

Seizures

One in four children with ASD develops seizures, often starting either in early childhood or adolescence. 5 Seizures, caused by abnormal electrical activity in the brain, can produce a temporary loss of consciousness (a “blackout”), a body convulsion, unusual movements, or staring spells. Sometimes a contributing factor is a lack of sleep or a high fever. An EEG (electroencephalogram—recording of the electric currents developed in the brain by means of electrodes applied to the scalp) can help confirm the seizure’s presence.

In most cases, seizures can be controlled by a number of medicines called “anticonvulsants.” The dosage of the medication is adjusted carefully so that the least possible amount of medication will be used to be effective.

Fragile X Syndrome

This disorder is the most common inherited form of mental retardation. It was so named because one part of the X chromosome has a defective piece that appears pinched and fragile when under a microscope. Fragile X syndrome affects about two to five percent of people with ASD. It is important to have a child with ASD checked for Fragile X, especially if the parents are considering having another child. For an unknown reason, if a child with ASD also has Fragile X, there is a one-in-two chance that boys born to the same parents will have the syndrome. 6 Other members of the family who may be contemplating having a child may also wish to be checked for the syndrome.

A distinction can be made between a father’s and mother’s ability to pass along to a daughter or son the altered gene on the X chromosome that is linked to fragile X syndrome. Because both males (XY) and females (XX) have at least one X chromosome, both can pass on the mutated gene to their children.

A father with the altered gene for Fragile X on his X chromosome will only pass that gene on to his daughters. He passes a Y chromosome on to his sons, which doesn’t transmit the condition. Therefore, if the father has the altered gene on his X chromosome, but the mother’s X chromosomes are normal, all of the couple’s daughters would have the altered gene for Fragile X, while none of their sons would have the mutated gene. Because mothers pass on only X chromosomes to their children, if the mother has the altered gene for Fragile X, she can pass that gene to either her sons or her daughters. If the mother has the mutated gene on one X chromosome and has one normal X chromosome, and the father has no genetic mutations, all the children have a 50-50 chance of inheriting the mutated gene.

The odds noted here apply to each child the parents have 7 in terms of prevalence, the latest statistics are consistent in showing that 5% of people with autism are affected by fragile X and 10% to 15% of those with fragile X show autistic traits.

Tuberous Sclerosis

Tuberous sclerosis is a rare genetic disorder that causes benign tumors to grow in the brain as well as in other vital organs. It has a consistently strong association with ASD. One to 4 percent of people with ASD also have tuberous sclerosis.

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