Asperger’s Disorder:  The Diagnosis Beyond DSM-IV

By Dr. Leslie Carter

While the most common diagnosis for children in the Pervasive Developmental Disorder category of DSM-IV is Asperger’s Disorder, few clinicians understand how to diagnosis this condition with confidence.  Furthermore, DSM-IV was published many years ago and clinicians who specialize in Asperger’s now understand the condition much better than the old DSM-IV diagnostic criteria suggests.  This article is intended to expand the clinician’s view of the Asperger’s 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 Asperger’s have difficulty making friends and tend to be viewed as socially odd.  A critical diagnostic feature of Asperger’s is the inability to easily use information provided through non-verbal body language.  People with Asperger’s often do not use body language to punctuate their own speech, which makes them appear stiff and unexpressive.  They also do not read other people’s 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 Asperger’s 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 Asperger’s or Autism lack empathy or attachment to others.  Assuming that there is no history of severe abuse or lack of attachment opportunities young Asperger’s 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 Asperger’s don’t 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 don’t 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 Asperger’s 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 Asperger’s 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 “the organization of sensory input for use.”  She clarifies by saying, “The many parts of the nervous system work together so that a person can interact with the environment effectively and experience appropriate satisfaction.”  From this perceptive, Asperger’s 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 Asperger’s is sensitivity to light, sound, touch, and texture in the mouth and on the skin.  Sometimes Asperger’s 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 Asperger’s 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, “The lights are too bright.” This would be an example of light sensitivity particularly to florescent lighting.  Asperger’s 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 Asperger’s 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 Asperger’s 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 Asperger’s 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 mother’s 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).  Asperger’s 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 “nonfunctional” 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 Asperger’s 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 Asperger’s 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 “point” from other people’s 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 “Top down” thinking.  Individuals with Asperger’s 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 Asperger’s 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 Asperger’s 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 Asperger’s children precocious readers (e.g., 5^th grade level readers while in kindergarten) and spellers.   Often this early reading advantage is lost by middle school years.  Be aware that despite these children’s ability to read older children’s material it is important that they read material appropriate for their level of emotional maturity.

Disorganization:   Despite great memory skills, many people with Asperger’s are quite disorganized.  Many children with Asperger’s 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 Asperger’s 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 Asperger’s children.  Their current language may use an odd tone of voice, pitch, or rhythm.  Asperger’s 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 “might not”, enough, estimate, “judgment call”, “wave the right” (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 Asperger’s can become angry and accuse teachers or parents of lying because they did not follow the letter of what they said.  When an Asperger’s child says a person’s nose is big or a picture is ugly; it probably is.              

            Emotional Reactivity:  Many children with Asperger’s 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 Asperger’s 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/Asperger’s 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/Asperger’s 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 Asperger’s 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.  Asperger’s 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, Asperger’s 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 Asperger’s 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 Asperger’s 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 Asperger’s as a diagnosis include: Attention Deficit Disorder, Obsessive Compulsive Disorder and Obsessive Compulsive Personality, Cluster A Personality Disorders (e.g., paranoid, schizoid, and avoidant), Tourett’s Syndrome, Tic Disorders, Anxiety Disorders, Nonverbal Learning Disability, and Social Phobia.  Some adults with Asperger’s have old diagnoses of Schizophrenia.  When Autistic or Asperger’s 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 Asperger’s it can be tempting to list all of the Asperger’s symptoms in other formal diagnosis (e.g., Asperger’s Disorder, ADD, OCD, Anxiety Disorder, NOS, Avoidant and Schizoid Personality Disorders).  Given the significant impact of our diagnostic paper trails on children’s lives and this broader understanding of Asperger’s symptoms I prefer to list the impairments present in the text, but no over label a child.              

High Functioning Autism versus Asperger’s Disorder: Many clinicians ask, “What is the difference between high functioning Autism and Asperger’s Disorder?”  DSM-IV suggests that significant language delay in preschool years is a characteristic of Autism, but not Asperger’s.  Tony Attwood, a leading expert, offers the interesting perspective that Autism and Asperger’s are different ends of the same continuum of symptoms (i.e., Autistic Spectrum).  He has observed that some children are originally diagnosed with Asperger’s 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 Asperger’s later in life (e.g., age 30).  Dr. Attwood, stated in a recent training video that the difference between high functioning Autism and Asperger’s is “the way they are spelled”. 

The movie Napoleon Dynamite is a good study of two Asperger’s brothers becoming men in a small town.  It affectionately shows the characteristic strengths and weaknesses of these people.  They can be socially naïve 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.           

Is the GFCF diet the right choice for my family?

Autism, Asperger’s and the Gluten Free Casein Free (GFCF) Diet

By Dr. Leslie Carter

I am frequently asked, “Is the GFCF diet right for my family member with an Autistic Spectrum Disorder?” The answer to this question needs to be decided by each family, but here are my guidelines for making this decision.

The Gluten Free Casein Free diet is designed to help heal intestinal tract problems seen in 70 – 80% of autistic individuals. It is a difficult diet to comply with and involves complete avoidance of foods made with glutinous grains like wheat, rye, barley, oats, triticale, and spelt. Casein is a type of cow’s milk protein and must be avoided too. For some individuals for whom other non-autistic family members have similar intestinal sensitivities these dietary restrictions may need to be life long. For many autistic individuals, however, avoidance of these foods for a year or two may be enough to heal the bowels so they can return to eating a fuller diet at a later date.

Individuals with Asperger’s Disorder often benefit from dietary changes as well. Many of these people find that they do not digest one or two of the following well: wheat, cow’s milk, or sugar. Gluten intolerance in Asperger’s individuals is less common unless other family members struggle with the same sensitivities.

To know if members of your family would benefit from dietary changes look for the following symptoms: chronic constipation, chronic loose stools or diarrhea, fluctuating bowel symptoms, excessive intestinal gas, bowel or stomach pain, bloating, appearing spacey after eating certain foods, eating a very restricted diet, appears “addicted” to bread or milk, sleep interrupted by stomach or bowel discomfort, fatigue, slow mental processing, requires more time to answer a question than other people, pale skin color, and dark circles under their eyes.

If you have a family member who appears to have some of these symptoms it is always best to get a formal evaluation from a health care professional who is familiar with these types of conditions. A medical doctor (family practice, pediatrician, or internist) can be helpful, but not all of them are knowledgeable about the condition or the importance of prompt treatment when it is identified. Gastroenterologists (medical specialists) can help diagnose some of these problems as well and may suggest blood tests or other gastric investigations (e.g., upper or lower GI series) to determine if a gastric disorder exists. Naturopathic physicians are an over looked group of professionals who possess a high level of expertise in gastric disorders and can be extremely helpful. Naturopathic physicians (ND’s) training teaches them that the immune system is based in the bowels and that bowel health is critical to the overall health of whole individual. Many also have extensive knowledge about dietary interventions and use of vitamins, minerals and other food supplements to aide bowel recovery. For this reason, many ND’s have exceptional knowledge about gastric problems and treatment options.

It is possible to get tested for food intolerances to determine if dietary changes are recommended. A blood test testing for IgG mediated food intolerances is commonly used and can be requested through a health care professional (e.g., MD or ND). One lab that does this type of testing can be located at www.foodallergies.com. This test will give a complex printout of foods that currently appear to be problematic. Electro dermal testing of food intolerances is also available through some NDs. It can provide a quick screening (results are immediate) as well. The accuracy rate of both of these types of tests is estimated to be around 85%. Remember food intolerances are only one reason to make dietary changes.

Because testing takes time, is costly, and is not 100% accurate some families decide to try the diet without formal testing. There is no problem with this approach. Because, however, the underlying conditions that necessitate the dietary intervension are very serious and can be life threatening, supervision by a knowledgeable MD or ND (whether formal testing is done or not) is strongly recommended. If you live in a rural area, many experts will consult with out-of-town families via the Internet or telephone after an initial evaluation is completed minimizing travel expenses. I do not recommend anyone use nutritional supplements or large doses of vitamins and minerals (more than an over-the-counter multivitamin) without the supervision of a MD, ND, NP or other professional with specific knowledge in the use of nutritional supplements. Nutritional supplements are real medicine and should be used cautiously.