Asperger syndrome

Asperger or Asperger’s syndrome (AS) is a developmental autism spectrum disorder (ASD).

The discovery of Asperger Syndrome (AS) dates back to 1944. Austrian pediatrician Hans Asperger described the syndrome when he was treating four boys with similar symptoms. His writings remained relatively unknown until 1981 when Lorna Wing, an English doctor and founder of the UK National Autistic Society published case studies of children who displayed the same signs. The term Asperger’s syndrome was introduced.

It wasn’t until 1992 that AS became an official diagnosis in the International Classification of Diseases (ICD-10). Two years later in 1994, it became an official diagnosis in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV).

Although symptoms are present early in life, Asperger syndrome is usually diagnosed with a child is school aged.  As with other ASDs, scientists do not know exactly what causes Asperger syndrome, but it is known that the brain of someone with this condition functions differently than that of someone without Asperger syndrome. It is a lifelong condition.

People with Asperger syndrome often have challenges with social, emotional and communication skills, as well as unusual behaviors and interests. Symptoms vary. There may be other sensory issues and co-conditions involved.

Children and adults with Asperger syndrome might:

• Have trouble understanding other people’s feelings or talking about their own feelings
• Have a hard time understanding body language or reading social cues or norms
• Have challenges understanding personal space
• Avoid eye contact or stare intently
• Want to be alone or may want to interact, but do not know how to do so effectively.
• Have narrow, sometimes obsessive special interests.
• Speak in unusual ways or with an odd tone of voice.
• Have a difficult time making and keeping friends.
• Seem nervous in large social groups.
• Be clumsy or physically awkward.
• Have challenges with gross motor skills such as poor handwriting or learning to ride a bike
• Have rituals that they refuse to change, such as a very rigid bedtime routine.
• Develop repetitive movements for self-regulation (i.e. flicking, flapping, humming)
• Have unusual or very intense sensory reactions.
• Be bothered by loud noises, lights, textures and tastes.

With appropriate services and support, individuals with Asperger syndrome are able to make progress in managing or overcoming these challenges and can learn to emphasize their strengths.

Just as with other autism spectrum disorders, all individuals with Asperger syndrome are unique and Asperger may present differently in symptoms from child to child, from adult to adult, from male to female.

Children and adults with Asperger syndrome do not have a language delay as children and by definition must have an average or above average IQ (measure of intelligence.) Children with other autism spectrum disorders may have a language delay and can have an IQ at any level.

If you are the parent of a youth, talk with your child’s doctor or nurse. If you or your doctor thinks there could be a problem, ask for a referral to see a specialist such as a developmental pediatrician, child neurologist, psychologist or psychiatrist who has had experience in diagnosing autism spectrum disorders.

As diagnosis generally requires a comprehensive evaluation including history about a patient’s childhood, it is important to try having information on hand in advance about developmental milestones or challenges and any evaluations you might have from teachers, counselers or professional providers.

A child may benefit from social skills training at school or in the community that respects him/her as an individual and teaches acceptance of all abilities. He or she might also benefit from speech therapy to practice talking with other people in different kinds of settings. (Individuals with Asperger syndrome may find it easier talking to adults or younger children than their own peers.)

Other common therapies include physical and occupational therapy (sometimes under the umbrella of sensory integration therapy) depending on the patient’s needs. It is recommended to begin intervention as early as possible in order to help your child maximize his or her full potential. Intervention, treatment or support strategies will look different from person to person and should be customized to that individual’s needs, capabilities and special interests.

As Asperger syndrome was not a diagnosis until 1994 and many in our society were unaware of it until years afterwards, there are many adult men and women with undiagnosed Asperger’s. Growing up, these adults may have been labeled or thought of themselves as shy, quirky or eccentric. If diagnosed, it may have been for a co-condition such as depression, OCD or a myriad of other possibilities.

Oftentimes it is not until a young family member (i.e. a son or a daughter) is diagnosed that a parent or relative learns about Asperger syndrome and recognizes many of the symptoms in themselves or a loved one in their family.  Because it presents differently from person to person, male to female in its severity, some may live their entire lives being unaware. Diagnosis can be expensive and it can require a lot of hoop jumping for adults. For some a diagnosis is not necessary but for others it is useful for understanding, support, building community and obtaining services.

Adults may do well to talk with their primary care physician and try to get a referral to a psychologist, neurologist or psychiatrist who diagnoses for Asperger syndrome. It is best to find a specialist who has experience in working with adults.  It is not uncommon for Asperger symptoms to be masked by other conditions.

Special Note: As of May 2013, a fifth version of Diagnostic and Statistical Manual was published, the DSM-5. In this new edition (the last was in 1994), Asperger Syndrome is now under the umbrella diagnosis “Autism Spectrum Disorder.” Some physicians and diagnosticians are still using the DSM-IV but many will be transitioning to version V.

Women and girls on the autism spectrum often go undiagnosed until later in life. They may appear on the surface as more social or more adept at expressing emotions. I was not medically diagnosed with Asperger syndrome (now under the autism spectrum umbrella) until after my children (now 13 and 19) were diagnosed with autism and Asperger Syndrome respectively in 2008. Oftentimes adults will look at me and say something to the effect of “but you don’t look like you have Asperger’s or “you don’t seem autistic”.

In discussion with many female Aspie peers, this can be a common, confusing and frustrating thing to hear. Many of us are extremely good at social scripting and masking, topics we discuss in other areas of the website and through our nonprofit publication, Spectrum Life Magazine. I bring it up here because I believe that when most people make comments like this that they mean well. We are ignorant of what we don’t know until we know it. That being said, it is important to be educated and to help educate others so as not to minimize or make light of the challenges and struggles that autistic youth and adults experience.

To help you further in your journey, we also have a Women and Girls Resource Section at our Autism Empowerment website.

Health-related material is provided for information purposes only and does not represent endorsement by or an official position of Autism Empowerment. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.

• National Institute of Mental Health
• Centers for Disease Prevention and Control (CDC)
• DSM-5 Autism Fact Sheet