AS is the name given to a profile of observational descriptions made by Dr Hans Asperger, a Viennese paediatrician who, in early 1940s, noticed that some of the children referred to his clinic had very similar personality characteristics and behaviour.
These children's characteristics and behaviour patterns are described in detail by Dr Tony Attwood on his website and in his books where he describes how children and adults with AS have a different, not a defective, way of thinking and how this different way of thinking can be characterised by a strong desire to seek knowledge, truth, and perfection with a different set of priorities than would be expected by neuro-typicals. (Neuro-typical or NT is often used to refer to people who do not have AS and are not diagnosed as being on the autism spectrum. It is a combination of the words 'neurological' and 'typical'). Dr Attwood describes how people with AS have a different perception of situations and different sensory experiences.
The unique AS profile of abilities has probably been an important and valuable characteristic of our species throughout evolution. However, it is only over the last 20 years that AS has become a name for describing the profile of characteristics known as AS and a diagnostic term.
We all have AS characteristics. The difference between people with AS and NTs is the degree of intensity and subtlety of expression of these characteristics, the persistence of the characteristics, individual personalities and uniqueness, and, most importantly, the impact of AS characteristics on everyday life and well being.
Why is this website titled Aspergers?
This question is often asked for two reasons.
Firstly, why is there no 'apostrophe s' and why is Aspergers not followed by 'syndrome', 'disorder', or 'condition'?
Aspergers has been selected as a stand alone word that does not require additional words - hence no 's – there is then no need to use additional words which can convey negative connotations of pathology and categorisation. It is well known that the autism spectrum is wide, that profiles of AS characteristics are unique, and for many, Aspergers is a gift, while for others, AS requires lifelong support.
Secondly, why use Aspergers as a term when AS no longer exists?
AS still exists but is not now officially included in DSM-5 as a separate diagnostic category. Changes to DSM-5 now focus on a dimensional view of the autism spectrum rather than a categorical approach. This means there is now no specific category in DSM-5 for the high functioning, more subtle end of the autism spectrum.
This change in DSM-5 is controversial because there is always a balance and judgment between the advantages of a diagnostic label to allow easy communication and access to services and treatment planning versus the disadvantages of pathologising and stereotyping. There is also a need for categorisation for research purposes and interpretation of research findings.
Many feel strongly that the AS category used for 20 years in previous editions of DSM has a positive image and should be retained because there is wide community understanding of AS and AS/NT differences. AS communities have built online communities to share knowledge, lived experiences, and proudly create positive images of the contribution of aspies (a term now used widely).
There are, therefore, many different opinions whether this change in DSM-5 is a useful one. Many want to continue using the term AS and don't want to be labeled autistic, others are proud of being autistic. Many want more research evidence for why the changes have occurred. Others quote arguments for AS as a biologically distinct category. Others want more research findings about the qualitatively different expression of AS for girls and women.
Clarity in use of terminology is required because there is no gold standard for clinical assessment of AS and diagnostic assessment opinions by experienced clinicians will be influenced by geographical location, purpose of assessment, local resources available for services, and national ASD guidelines (e.g., New Zealand and Australia have different ASD guidelines and, in Australia, there are different state requirements).
Diagnostic assessment opinions using DSM-5 may describe AS as Autism Spectrum Disorder, Level 1 (ASD Level 1). Sometimes, also known as AS or other terminology for clarification may be included in brackets. AS still exists in ICD-10 but may not be included in ICD-11 (due out in 2018) depending upon whether ICD follows direction of DSM.
For all these reasons, this website is called Aspergers.
Why is a diagnostic assessment helpful?
Diagnostic assessments can be helpful to provide self-understanding and empowerment about feeling different.
Adults and adolescents often seek a diagnostic assessment because family members and friends are concerned. Others know they are different and search the internet to learn about AS, often completing online surveys. For many adults, diagnosis does not occur until after a child or grandchild has been diagnosed following a recommendation from a health professional or teacher.
Many describe the relief of a diagnosis and how the diagnosis has provided understanding about why and how they think, feel, and behave differently. A diagnosis provides a framework for explaining themselves to others, for self-management, and for identifying their future needs. For many, there is also pride in knowing about famous aspies and being actively involved in online aspie communities.
For families and colleagues, a diagnosis provides understanding and a framework for acceptance and support. There is often relief there is no-one to blame.
A diagnosis of AS can provide access to resources, assistance, support, and direction for educational programmes and intervention treatments.
For adults, a diagnostic assessment may assist the restructuring of work environments and provides guidance for dialogues with managers regarding work practices, mentoring, and performance reviews.
Why are more boys than girls diagnosed with AS?
The majority of children referred for diagnostic assessment are boys.
The ratio of males to females with ASD is about four to one and increases to 10 to one for AS. Many clinicians believe many girls with autism are going un-diagnosed because their symptoms are often more subtle than those in boys and current tests don't take this into account. Another explanation is that girls have very good coping mechanisms, can camouflage well in social settings, and are very good at imitating and pretending. The girls also have better skills at disappearing and not being noticed. Boys, on the other hand, become noticed through their behaviour, poor social skills, and their more noticeable special interests. Girls have qualitatively different special interests.
In a recent Lateline programme on Australian TV (August 2014), Danuta Bulhak-Paterson and Lori Ernsperger discuss why they think girls are falling through the cracks in the sense they are not being diagnosed at school.
They discuss different understandings of female presentation, emphasis on male characteristics in diagnostic questionnaires, the ability girls have to mask characteristics and achieve successfully at school and university while struggling in other areas, and the cut off scoring levels in diagnostic tests being less applicable to girls.
Many women are not diagnosed with AS until they learn about AS when a young son is diagnosed. Others learn about AS when they seek treatment for eating disorders, depression, and anxiety in late adolescence or adulthood.
If there is no 'cure', what's the point of treatment?
It is universally accepted there is currently no cure for AS. Current research efforts in the fields of genetics and neuroimaging are moving in the direction of new diagnostic tools – perhaps, in future, blood tests and MRIs may be possible – but not in near future. Currently, diagnostic assessments involve the use of time consuming observational tools and processes by experienced clinicians.
While many argue they would not want a cure for AS, that AS is part of the richness and complexity of life, they know that support is needed to live in a world dominated by NTs. Support is particularly important when there are difficulties with the management and expression of emotions and there are high levels of anxiety, sadness or anger.
Evidence based psychological treatment programmes can help the management of mood, sensory issues, and expression of emotions. Cognitive behaviour therapy (CBT), behaviour therapy, narrative therapy, interpersonal therapy, acceptance and commitment therapy (ACT), family therapy and dialectical behaviour therapy can provide effective treatment programmes to manage specific symptoms and characteristics of AS.
Assistance can also be provided to support the completion of educational programmes and to manage employment issues.
Why do HR staff and managers need to understand Aspergers?
AS is increasingly being recognised in the workplace.
There is a higher incidence of AS in organisations and academic institutions associated with particular professions, for example, the natural sciences, engineering, mathematics, information technology, accounting, and related fields. Clinical experience indicates there is a different pattern of professions for men (e.g., engineering, accounting, and information technology) and women (e.g., literature, music, drama, caring professions) but research findings are required to verify these possible stereotyped differences of career choices for men and women.
Regardless of actual profession, employees with AS are generally speaking highly valued technically and are considered to be very dedicated to high achievement in their professions. HR staff and colleagues can, however, be faced with challenges related to interpersonal relationships, team work, understanding of social situations, and management styles.
Some organisations are known to recruit specifically for employees with AS because they value the unique qualities AS employees can contribute. Again, HR staff and managers need to understand AS to recruit, retain, and manage employees with AS professionally. They need to understand the controversial aspects of creating an organisational culture based on neuro-diversity. For example, neuro-diversity can be viewed as an inclusive term of all possible ways of thinking or rejected because this is impractical, too idealistic, or sounds too medical.
Regardless of whether or how organisations and institutions embrace concepts of neuro-diversity in their organisational cultures, they still legally need HR policies and practices to recruit, retain, and manage employees with AS in a professional manner demonstrating best practice HR management.
How do you pronounce Aspergers?
There is often confusion about whether Asperger is pronounced with a hard or soft g, whether the g is pronounced as in goat or giraffe.
The National Autistic Society, UK provides advice about how to talk about autism and advises that a hard g should be used.
Personally, I pronounce Aspergers with a hard g as in goat because the name is derived from Dr Hans Asperger, an Austrian paediatrician and his surname is pronounced with a hard g.