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How Should I Evaluate an Adult for Possible Asperger's Syndrome?

A patient reports a childhood history of difficulty learning social rules, learning problems, and rocking behaviors, which she learned to stop. She also reports social difficulties as an adult. What is the best way to evaluate her to rule out Asperger's syndrome (AS) and autism spectrum disorders (ASD)?

Response from Mary E. Muscari, PhD, CPNP, APRN-BC,CFNS
Professor, Director of Forensic Health/Nursing, University of Scranton, Scranton, Pennsylvania; Pediatric Nurse Practitioner, Psychological Clinical Specialist, Forensic Clinical Specialist, Lake Ariel, Pennsylvania

Asperger's syndrome (AS), one of the autistic spectrum disorders (ASD), can be very difficult to diagnose. People with this disorder can function fairly well in everyday life; however, they tend to be socially immature and may be perceived as odd or eccentric.

ASD, also known as pervasive developmental disorders (PDD), comprise 5 disorders characterized by varying degrees of impairment in communication skills and social interactions, as well as restricted, repetitive, and stereotyped behaviors.[1] The spectrum ranges from the severe form of autism to the milder form, AS.

Autistic Spectrum Disorders

Autism is a severely incapacitating disorder characterized by impairment in 3 areas: social interactions (failure to develop appropriate relationships, lack of spontaneous seeking to share enjoyment or interests, lack of emotional reciprocity); communication (delay or lack of language development, idiosyncratic or stereotyped language), and repetitive patterns of behavior, interests, and activities (preoccupation with restricted and stereotyped patterns of interest, apparently inflexible adherence to nonfunctional routines or rituals, repetitive motor mannerisms [hand flapping, complex body movements], preoccupation with objects).

AS is characterized by the same social impairments and repetitive patterns of behavior seen in autism, but without clinically significant general delay in language, cognitive development, or development of age-appropriate self-help skills, adaptive behavior (other than social interaction), and curiosity about the environment.

Rett's disorder, which occurs predominately in females, is a rare condition that follows apparently normal prenatal, perinatal, and early infancy development. Head growth deceleration occurs between 5 and 48 months, with loss of previously acquired purposeful hand skills and social engagement. There is also severe cognitive and motor impairment.

Childhood disintegrative disorder is a rare disorder that resembles autism. After a prolonged period of normal development (typically 2 to 4 years), there is a loss of previously acquired skills (language, social skills, adaptive behavior, motor skills, bladder and bowel control).

PDD not otherwise specified (NOS) is a diagnosis used when there is a severe and pervasive impairment in the development of reciprocal social interaction or communication skills or when stereotyped behavior, interests, and activities are present, but the criteria are not met for other ASD/PDDs, schizophrenia, schizotypal personality disorder, or avoidant personality disorder.

Asperger's Syndrome

AS was first recognized by Hans Asperger of Austria in 1944. The disorder was not brought to the attention of the English-speaking world until the 1980s, when Lorna Wing published a case review of the syndrome, and the disorder did not find its way into the American Psychiatric Association's Diagnostic and Statistical Manual as a specific PDD until 1994.[2] Although much has been written about AS in children, little literature exists about the disorder in adults, and research in all age groups is in its infancy.

Like autism, AS is defined by social impairment and repetitive patterns of behavior, interests, or activities, but unlike autism, intellectual ability and syntactical speech are normal. Individuals with AS may enjoy associating with people but are unable to maintain more than a superficial level of relating to them and are rarely able to respond empathetically to others. Lacking self-consciousness, they are usually unaware of their social strangeness and may become overly sensitive to criticism or suspicious of others, sometimes leading to a diagnosis of paranoid ideation. Their speech patterns tend to be monotonous, stilted or gauche, and they exhibit little ability for small talk or humor. They have a tendency to use odd words and focus on a topic of personal interest. They display minimal facial expression, except for strong emotions such as anger, and few gestures. Comprehension of the nonverbal communication of others is poor. Some people with AS appear to have special talents or skills, largely because of rote memories and fixations on 1 or 2 subjects. They can absorb every available fact on their fixated subject and talk about it at length, yet have little grasp of the meaning of the facts they learn.[3]

AS may be accompanied by comorbid conditions such as depression, anxiety, obsessive-compulsive disorder, attention-deficit hyperactivity disorder (ADHD) and alcoholism, as well as relationship difficulties. AS can predispose a person to criminal offending behaviors (stalking, computer crime, inexplicable violence) and can affect his or her mental capacity and level of responsibility to bear witness or be tried. AS can color psychiatric disorders, affecting both presentation and management, for children and adults across a wide range of functional ability.[4]

Diagnosing Asperger's Syndrome in Adults

While the more overt symptoms of autism are typically more obvious in early childhood, the symptoms of AS may only become apparent with the increasing functional and social demands of adolescence. In the adolescent with AS, the stress of unrecognized disability, limited achievement, and a sense of failure are often revealed by increasing contrast with siblings and peers. Family and peers may become exasperated by the person's self-centered insensitivity, obsessiveness, and rigid inflexibility, further distorting personal relationships. All these factors can add secondary disability and result in dependency that is disproportionate to the person's intellectual ability.[5]

Adults with AS present with subtle and specific difficulties, particularly in communication, social relationships, and interests (the triad of AS). However, not all individuals are affected as extremely as noted here:[4,6]

* Communication: Conversation is often one-sided, long-winded, circumstantial, lecture-like, and delivered in a robotic fashion. Less obvious abnormalities include unrecognized, underlying discrepancies between verbal and nonverbal language and between comprehension and expression. Individuals may lack eye contact, have few facial expressions and awkward body movements, and they may eventually develop social anxiety and nervous tics.

* Social relationships: Relationships are one-sided, distant, or absent. An unempathic objectivity leads to difficulties ranging from understanding friendship (how friends differ from acquaintances) to developing sexual relationships (grasping rules that distinguish seduction from date rape). Persons with AS misunderstand relationships and are either too intense or too detached.

* Interests: At the most extreme, a person with AS has an eccentric life with rigid routines and a systematic, narrow focus on activities such as stamp collecting, baseball statistics, or railway timetables. Interests remain circumscribed and, rather than being an avenue for social interaction, they are enjoyed in solitude.

Adults with AS may also have problems with future planning and organization. Some compensate for this by being extremely meticulous in their planning and keeping extensive written or mental checklists. Other possible symptoms include hypersensitivity to sensory stimuli, violent outbursts, self-injurious behavior, rituals, odd posturing, and hand flapping.

When assessing an individual for potential AS, nurse practitioners (NPs) can follow these guidelines modified from the National Autistic Society (United Kingdom).

Setting:

* Avoid bright lighting. Some people with AS are very light sensitive and can even detect the flashing of fluorescent lights.

* Prevent other sensory overload by minimizing loud noises and high-pitched sounds.

* Be aware that hand flapping, rocking, or ear covering may be their calming mechanism, so do not stop the behavior unless absolutely necessary.

* Waiting causes increased stress levels. Whenever possible, schedule patients for AS assessment as the first or last appointment of the day. If this is not possible, allow them to wait in a small side room or in their car, or allow them to go home and come back at a later agreed time.

Interview:

* Explain what you are going to do before you do it, and use pictures when possible.

* Use clear, simple language and speak in short sentences.

* People with AS take everything literally, so be concrete and avoid the use of idioms, irony, metaphors, and words with double meanings.

* Avoid using facial expressions, body language, or gestures without verbal instructions, as these may be misunderstood.

* Ask for the information that you need, because a person with AS may not volunteer vital information without being asked directly, and because they may expect you to know what they are thinking.

* Allow the person extra time to process what you say to them.

* Realize that the person may not make eye contact during the interview, and do not assume that a nonverbal person does not understand what you are saying.

* People with AS do not understand personal space. Thus, they require more personal space than the average person, or they may invade your space.

Physical Assessment:

* Exams may prove very stressful, so warn the person before touching him/her.

* Give direct requests. Say, "Open your mouth." Don't say, "Can you open your mouth?" With the latter question, they may not understand that you are actually asking them to do something.

* If performing something intrusive, such as phlebotomy, realize that people with * AS may have high or low pain tolerance or an unusual response to pain, such as laughter, humming, singing, or clothing removal. Use local anesthetics whenever possible.

NPs may prefer to utilize an assessment tool to diagnose AS. One that is readily available is the Adult Asperger Assessment (AAA), developed at the Autism Research Centre (ARC), situated within the School of Clinical Medicine in the Department of Psychiatry, Section of Developmental Psychiatry, at the University of Cambridge, United Kingdom.[7] Other diagnostic rating scales can be found at Online Asperger Syndrome Information & Support (OASIS).[8]

Since people with AS may misperceive their circumstances, it is helpful to complete the assessment with data from others, such as partners, friends, teachers, and employers. It is also advisable to give the individual with AS a written report of the assessment to avoid misunderstandings that may arise from spoken communication.[4]

Differential Diagnoses

The symptoms of AS mimic other disorders; therefore, NPs should become familiar with the most likely differential diagnoses[4]:

* Selective mutism is characterized by the persistent lack of speech in at least 1 social situation, despite the ability to speak in other situations.

* Social phobia is characterized by overwhelming anxiety and excessive self-consciousness in everyday social situations.

* Generalized anxiety disorder is characterized by constant, exaggerated worrisome thoughts and tension about everyday routine life events and activities for a period of at least 6 months.

* Panic disorder is characterized by repeated episodes of intense fear that strike often and without warning. Physical symptoms include chest pain, heart palpitations, shortness of breath, dizziness, abdominal distress, feelings of unreality, and fear of dying.

* ADHD is characterized by impaired functioning in multiple settings, including home and school, and in relationships with peers. Symptoms include impulsiveness, hyperactivity, and inattention.

* Simple schizophrenia (especially treatment-resistant) is characterized by an insidious but progressive development of oddities of conduct, inability to meet the demands of society, and a decline in total performance.

* Paranoid schizophrenia is characterized by relatively stable and often paranoid delusions, usually accompanied by auditory hallucinations.

* Catatonic schizophrenia is characterized by prominent psychomotor disturbances that may alternate between extremes such as hyperkinesis and stupor.

* Personality disorders (PD): Avoidant PD is characterized by a persistent and complex pattern of feelings of inadequacy, extreme sensitivity to what other people think about them, and social inhibition.

* Schizoid PD is characterized by a pervasive pattern of detachment from social relationships and a restricted range of expression of emotions in interpersonal settings.

* Obsessive-compulsive PD is characterized by a preoccupation with orderliness, perfectionism, and control at the expense of flexibility, openness, and efficiency.

* Antisocial PD is characterized by a pattern of disregard for other people's rights, often crossing the line and violating those rights.

Relief and Reassurance

AS is difficult to diagnose, and the diagnosis should be confirmed by a mental health professional well versed in the diagnosis and treatment of AS. However, a definitive diagnosis can be a relief because it allows individuals to learn about their condition, understand where and why they have difficulties, and obtain proper assistance.
Posted 05/10/2006
References

1. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders DSM-IV-TR (Text-revised). Washington, DC: American Psychiatric Association; 2000.
2. Perlman L. Adults with Asperger disorder misdiagnosed as schizophrenic. Prof Psychol Res Pr. 2000;31:221-225.
3. Wing L. Asperger's syndrome: A clinical account. Psychol Med. 1981;11:115-130.
4. Berney T. Asperger syndrome from childhood into adulthood. Advan Psychiatr Treat. 2004;10:341-351.
5. Howlin P. Autism and Asperger Syndrome - Preparing for Adulthood, 2nd ed. London, UK: Routledge; 2004.
6. National Autistic Society. How do I get a diagnosis as an adult? 2003. Available at: http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=255&a=3341. Accessed May 5, 2006.
7. Autism Research Centre, University of Cambridge. Adult Asperger Assessment Tool. Available at: http://www.autismresearchcentre.com/docs/tests/TheAAA.xls. Accessed May 5, 2006.
8. Online Asperger's Syndrome Information and Support (OASIS). Diagnostic Rating Scales for Asperger's Syndrome. Available at: http://www.udel.edu/bkirby/asperger/DX_scales.html.

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