Aspergerís Disorder:  The Diagnosis Beyond DSM-IV

By Dr. Leslie Carter, Tigard, Oregon

While the most common diagnosis for children in the Pervasive Developmental Disorder category of DSM-IV is Aspergerís Disorder, few clinicians understand how to diagnosis this condition with confidence.  Furthermore, DSM-IV was published many years ago and clinicians who specialize in Aspergerís now understand the condition much better than the old DSM-IV diagnostic criteria suggests.  This article is intended to expand the clinicianís view of the Aspergerís diagnosis using our current level of understanding of the topic, knowing that the criteria ultimately published in the new DSM-V may be slightly different.

Social Functioning:  There is little argument that individuals with Aspergerís have difficulty making friends and tend to be viewed as socially odd.  A critical diagnostic feature of Aspergerís is the inability to easily use information provided through non-verbal body language.  People with Aspergerís often do not use body language to punctuate their own speech, which makes them appear stiff and unexpressive.  They also do not read other peopleís body language well and often misunderstand social intensions.  Furthermore, many affected people have a poor ability to distinguish faces of friends from strangers.  In extreme cases, face blindness might be a problem.  There may also be a profound lack of understanding of the larger picture of social hierarchy (i.e., who is in charge).  So when an Aspergerís individual joins a circle of people talking, because of their social learning disability they often do not understand who is leading a conversation or whether they know those present.  They may not understand what their own role in the conversation should be.  They probably do not know how to insert their opinion appropriately into the conversation or what the emotional tone of the conversation is.  If they make a social error in the conversation they may not know how to fix the mistake.   

The Empathy Myth:  Many people have the misunderstanding that people with Aspergerís or Autism lack empathy or attachment to others.  Assuming that there is no history of severe abuse or lack of attachment opportunities young Aspergerís children are very attached and even emotionally dependent on their parents and caregivers.  They can have tender loving moments with those who know them well, just like other children.  Many children with Aspergerís donít seem to be able to experience or understand the complexity of emotions that other children feel.  They understand happiness, sadness, fear and anger, but not the more complex emotions like teasing, contempt, and conceit.  This limited emotional repertoire is confused with lack of empathy at times as well.  Because they donít use social gestures well they may need to be taught how to ask for hugs or use physical comfort when they are distressed.  If they have been abused, bullied, physically ill or overwhelmed by sensory problems Aspergerís children can become very distant, cold, and angry like any other child.          

Sensory Integration:  Many experts now agree that sensory integration problems contribute significantly to the anxiety, rage, temper tantrums, or isolation and detachment seen in child with Aspergerís or Autism diagnoses.  The concept of sensory integration, however, is better known in the fields of speech, vision, auditory, and occupational therapies rather than in psychology.  According to Jane Ayres, Ph.D. (2000) sensory integration is defined as ďthe organization of sensory input for use.Ē  She clarifies by saying, ďThe many parts of the nervous system work together so that a person can interact with the environment effectively and experience appropriate satisfaction.Ē  From this perceptive, Aspergerís is seen as a neurological disorder which can include dysfunction in the ability to be sensitive to and properly utilize the senses of hearing, gravity and movement (i.e., vestibular), muscles and joints (proprioceptive), touch, and vision.  The ability to properly integrate these senses is theorized to be the foundation onto which the proper use of basic skills like language, speech, balance, coordination, motor planning, eating, emotional stability, and emotional attachment are built.  Proper development of these basic skills is theorized to be required for successful use of even more complex experiences like good concentration, reading comprehension, mental organization, self control and even abstract reasoning to result.

Over Sensitivity:  Common in the diagnosis of Aspergerís is sensitivity to light, sound, touch, and texture in the mouth and on the skin.  Sometimes Aspergerís children appear odd because they wear sunglasses, hats or hooded sweatshirts at inappropriate times.  This can be a coping strategy for sound or light sensitivity.  During a classroom observation, I witnessed an Aspergerís child turn off the lights in his kindergarten classroom.  I intervened between the child and the enraged teacher who thought he was a trouble maker.  I asked the child why he had turned off the lights.  He said, ďThe lights are too bright.Ē This would be an example of light sensitivity particularly to florescent lighting.  Aspergerís children may wear odd clothing, because fashionable clothing does not feel good.  They may avoid hugs or physical touch from others because it makes their skin hurt.  They may be picky eaters because certain food smells or textures seem revolting.   They may suddenly scream and put their hands over their ears because some sound is overwhelming to them.  A very careful hearing examination of one child revealed that his bone conduction hearing was so sensitive that he could be overwhelmed by very low sounds that most humans do not even hear.  We discovered he tended to become irritable in class when the school heating system at the far end of the building started up.

Under Sensitivity:  Conversely, some children seem to be insensitive to some sensations as well.  Some individuals with Aspergerís are suspected of being hard of hearing due to insufficient sensitivity to sound.  Some children can be difficult to toilet train due to lack of sensitivity to the experience of being wet.  High pain tolerance may also be present.     

Motor Clumsiness:  In part, the senses of vestibular and proprioceptive functions are related to movement of the body and the sensation of joints.  Motor clumsiness can be a symptom of Aspergerís including: odd gait, poor balance, lax joints, poor rhythm, and problems synchronizing movements with others.  Associated with these problems can also be poor manual and fine motor dexterity including unreadable hand writing.  Learning to type on a computer is often a good solution for this problem. 

Compulsive Behaviors:  DSM-IV describes one group of Aspergerís symptoms to include repetitive patterns of behaviors, interests and activities (i.e., obsessive compulsive symptoms).  They may have preoccupations with focused interests.  In higher functioning or older children this symptom may take a more socially appropriate form like compulsively collecting facts and items associated with Japanese Anime, Star Wars, or Lord of the Rings movies.  In younger children it can be associated with unusual interests like manhole covers, plumbing fixtures, or street signs.  Nonfunctional rituals can develop surrounding these interests.  For example, a child may run from their motherís arms into the street to compulsively read the label on a manhole cover.  Or a child interested in plumbing compulsively flushes the school toilets due to the desire to repeat the visual sensory experience of the whirling water (light) while holding their hands over their ears (sound).  Aspergerís individuals may also have repetitive motor mannerisms.  They may chew on string, twist their fingers, flex their hands or other behaviors.  We now understand that many of the seemingly ďnonfunctionalĒ repetitive behaviors described in DSM-IV in fact have basis in sensory integration problems.  When a child performs repetitive activities in some cases they may be trying to put together some sensory experience (i.e., treating themselves) giving the symptom a useful function. Often therapists can help Aspergerís children identify the function that a behavior serves and provide a more acceptable or mature alternative behavior, thus helping the child fit in better socially.

Detail Oriented Cognitive Style:  Most people with Aspergerís take a very detail oriented approach to life.  When you live with sensory integration problems the details are important.  These children may tend to use toys in a very repetitive way.  They may line toys (e.g., cars or horses) up into displays to be admired, but not to be played with in an imaginative fashion.  Some very young children may enjoy spinning the wheels of an upside down car rather than rolling it on the floor.  Often this is again a type of sensory play. 

Thinking from the Bottom Up:  A complexity this detail orientedness can cause in school or work settings is a tendency to loose track of the conceptual whole of a project or the ďpointĒ from other peopleís perspectives.  Many students are taught in school to organize essay assignments using outlining.  Using this method of organization, a writer starts with the main thesis or point, builds in sub topics, and then adds interesting details to flesh out the paper.  This is an example of ďTop downĒ thinking.  Individuals with Aspergerís may not think this way at all.  They may know the general topic or thesis they have been assigned to write about very well.  Their natural tendency, however, is to build from their vast fund of details up to the general thesis.  The problem is that it is also possible to become sufficiently distracted by the details that they loose track of the point of the paper or create a paper on a totally different topic accidentally.  Some intellectually gifted students with Aspergerís have IEP support in paragraph organization and paper writing for this reason.  One benefit of this thinking style is that they are very skilled at writing procedures for how things should to be done, but not necessarily writing a coherent creative story.

The Gift of Memory:  The blessing of being detail oriented is that people with Aspergerís are often gifted at rote visual or auditory memory.  They are unbeatable at games of trivia in their field of interests.  They love to talk about their favorite topics and can have encyclopedic knowledge in those areas.  This memory skill, however, can also result in over-estimation of intelligence and emotional maturity.  If they can find employment in the area of their interests they can quickly become experts in their field.  Children may play repetitively by reciting scripts from movies or reenacting favorite scenes.  Some children use this memory skill to teach themselves to read during preschool years.  Often this early reading is learned using whole word visual memory (i.e., remembering the word as a whole piece) rather than sounding the word out phonetically.  These skills can make some Aspergerís children precocious readers (e.g., 5th grade level readers while in kindergarten) and spellers.   Often this early reading advantage is lost by middle school years.  Be aware that despite these childrenís ability to read older childrenís material it is important that they read material appropriate for their level of emotional maturity.

Disorganization:   Despite great memory skills, many people with Aspergerís are quite disorganized.  Many children with Aspergerís are initially diagnosed with Attention Deficit Disorder in early grade school until their lack of social skills become more obvious in late grade school or middle school.  They may struggle to learn money and household management skills.  Other life skills may need to be specifically taught, like use of the bus systems, how to organize homework, etc.  This problem can be a major impediment to employment for some people.       

            Use of Language:  Although DSM-IV specifically defines Aspergerís Disorder as not including language delay symptoms we now understand that this may not be completely accurate.  History of speech delay in early childhood can be present in some Aspergerís children.  Their current language may use an odd tone of voice, pitch, or rhythm.  Aspergerís children may choose very formal sounding language, avoid slang words, not understand the double meanings in jokes, and have a very literal understanding of language.  They may not understand the more abstract meanings of words and phrases like ďmight notĒ, enough, estimate, ďjudgment callĒ, ďwave the rightĒ (to an attorney), etc.  They may also not understand instructions that rely heavily on the use of pronouns (e.g., you, me, I, and we).  Children with Aspergerís can become angry and accuse teachers or parents of lying because they did not follow the letter of what they said.  When an Aspergerís child says a personís nose is big or a picture is ugly; it probably is.              

            Emotional Reactivity:  Many children with Aspergerís can be very emotionally sensitive and over reactive.  They can have temper tantrums and rages easily.  These strong emotions often result from sensory over load (e.g., exposure too much noise in cars), granting control to adults or confusion about understanding language.  While it may be tempting to suspect Borderline Personality, Bipolar, or manipulative tendencies often these concerns are not justified.  Manipulative tendencies, in particular, are not common in this population because they are such literal thinkers and blunt speakers.  It is important to know that children with Aspergerís may appear to be talkative and fluent in their use of language, but when emotionally overwhelmed their ability to speak can be greatly reduced or completely lost until the upset passes.  If this happens it can be very frightening to the child; quiet, patient support until it passes (e.g., usually a few minutes) is best.        

Medical Complications:  Many clinicians are unaware that as much as 60% of the Autistic/Aspergerís population may struggle with rarely diagnosed chronic gastrointestinal problems.  Harvard Medical School is currently organizing a national research project and database to better track, diagnose and teach physicians about the seriousness of these intestinal endopathies and malabsorption conditions.  Symptoms of these conditions include: poor sleep, being awake at odd hours of the night, pale skin complexion, dark circles under the eyes, fatigue, chronic gas, constipation, bowel pain, irritable bowel syndrome, reflux, and nausea.  When these conditions are not adequately treated children can show anxiety, hyperactivity, inability to relax, fatigue, anger and irritability, confusion, forgetfulness, odd giggling, or worsening of sensory integration symptoms.  Associated conditions include: Celiac Disease (inability to digest gluten (a protein found in most grains)), Crones Disease (difficulty digesting food fiber), Malabsorbtion (difficulty absorbing vitamins, minerals, and other components in food), food intolerances (e.g., sugar, dairy, wheat, gluten, or soy), yeast infections (that only manifest themselves inside the body), poor liver and kidney function, and epilepsy (rates as high as 25% with onset in adolescence).  Since the majority of physicians still have little information about the prevalence of these conditions in the Autistic/Aspergerís population and have little knowledge of nutritional interventions, naturopathic physicians do much of this type of treatment.  An organization called Defeat Autism Now (DAN) has piloted a medical protocol for these conditions.  The DAN website lists doctors in each state that have developed expertise in their treatment protocol.  Other groups have developed similar treatment protocols as well.   

Evaluation Tips:  One of the unique symptoms of Aspergerís and many Pervasive Developmental Disorders is the inability to read social cues.  A fairly reliable method of assessing this skill is to give the Roberts Apperception Test or some similar task.  The Roberts, like the Thematic Apperception Test (TAT or CAT), has gender specific pictures of social dilemmas.  The child is asked to tell a story about each picture.  Aspergerís individuals often have significant difficulty accurately identify the emotions present based on the non-verbal cues present.  Furthermore, their stories are often weak in plot and content.  Remember, Aspergerís children often can repeat stories that they know, but will rarely give creative original stories.  An exceptionally low Weschler Picture Arrangement subtest score can suggest related social sequencing problems.  Listen for the tone of voice, odd rhythm, pitch, literal use of language, and problems with pronouns.

The Aspergerís Syndrome Diagnostic Scale (ASDS) is a short check list that can be used to guide interview questions.  It can be used to help clarify the likelihood of an Aspergerís diagnosis and includes many of the sensory and cognitive symptoms listed in this article.   

Medical problems can be diagnosed by a knowledgeable naturopathic or medical physician.  Sensory integration problems can be interviewed for and observed.  Appropriately trained audiologists, occupational, and speech therapists will be able perform a more formal sensory integration evaluation and provide treatment guidelines.

Other Diagnostic Considerations:  Other conditions to rule out when considering Aspergerís as a diagnosis include: Attention Deficit Disorder, Obsessive Compulsive Disorder and Obsessive Compulsive Personality, Cluster A Personality Disorders (e.g., paranoid, schizoid, and avoidant), Tourettís Syndrome, Tic Disorders, Anxiety Disorders, Nonverbal Learning Disability, and Social Phobia.  Some adults with Aspergerís have old diagnoses of Schizophrenia.  When Autistic or Aspergerís individuals become extremely stressed and regress their reality contact can change, they may compulsively recite memories to themselves, become paranoid and withdraw.  Sometimes during these episodes Schizophrenia can be diagnosed.  When evaluating individuals with Aspergerís it can be tempting to list all of the Aspergerís symptoms in other formal diagnosis (e.g., Aspergerís Disorder, ADD, OCD, Anxiety Disorder, NOS, Avoidant and Schizoid Personality Disorders).  Given the significant impact of our diagnostic paper trails on childrenís lives and this broader understanding of Aspergerís symptoms I prefer to list the impairments present in the text, but no over label a child.              

High Functioning Autism versus Aspergerís Disorder: Many clinicians ask, ďWhat is the difference between high functioning Autism and Aspergerís Disorder?Ē  DSM-IV suggests that significant language delay in preschool years is a characteristic of Autism, but not Aspergerís.  Tony Attwood, a leading expert, offers the interesting perspective that Autism and Aspergerís are different ends of the same continuum of symptoms (i.e., Autistic Spectrum).  He has observed that some children are originally diagnosed with Aspergerís symptoms.  Other children can have the history of low functioning or classic Autism (e.g., age 2), mature into higher functioning Autism (e.g., age 11), then seem indistinguishable from Aspergerís later in life (e.g., age 30).  Dr. Attwood, stated in a recent training video that the difference between high functioning Autism and Aspergerís is ďthe way they are spelledĒ. 

The movie Napoleon Dynamite is a good study of two Aspergerís brothers becoming men in a small town.  It affectionately shows the characteristic strengths and weaknesses of these people.  They can be socially naÔve and yet loyal friends.  They can be brilliant and passionate in their favorite topics and yet become paralyzed by fears of the unknown.  They can be brutally honest and demand that we speak truthfully as well.  When they function well they can be good parents, spouses and friends. 

I am constantly struck by how hard this population works to try to do what the rest of us do fairly easily; make friends and be accepted.  A little understanding can go a long way.           


Selected Additional Reading:

Aspergerís Syndrome: A guide for Parents and Professionals

By Tony Attwood   (A good general guide)

Pretending to be Normal  (A personal account of ASD, good for teens and parents)

By Liane Holliday Willey

Thinking in Pictures and Other Reports from my life with Autism.

By Temple Grandin  (A personal account of ASD from an adult/professor)

Sensory Integration and the Child  (Some great charts about sensory issues). 

By Jean Ayers, Ph.D.

The Fabric of Autism: Weaving the threads into a Cogent Theory

By Judith Bluestone   (A guide to sensory integration issues in ASD)

Children with Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder      By Jaquelyn McCandless, MD (Some of the medical information)

Special Diets for Special Kids

By Lisa Lewis, Ph. D.  (A book about Gluten Free Dairy Free Diet option)

ADD Friendly Ways
to Organize Your Life

By Kolberg