Asperger’s Syndrome defined gives room and space for important aspects of what Asperger’s Syndrome is without narrowly only answering that question, “What is Asperger’s Syndrome”. In defining Asperger’s Syndrome it is important to broaden what that refers to and means in people’s lives. Those diagnosed with it and those who are loved ones of those diagnosed with it.
You may have already read on this site and many other sites including my own at Asperger Adults very similar and standard definitions of what Asperger’s Syndrome (AS) is and what the traits of it are that once recognized make for the diagnosis of AS.
You will again, read those here as well. They are important and at the core of how AS is understood, however, they do mislead people into thinking that all people with AS are the same. That is not the case at all. They are relevant and need to be known. But, as equally as they need to be known, as an adult with Asperger’s Syndrome, myself, diagnosed in adulthood in 1998, as to how they do or do not apply to each individual with AS.
What is Asperger’s Syndrome (Officially and technically) at its core? The traits of AS are:
Diagnostic Criteria for 299.80 Asperger’s Disorder (From the DSM-IV):
“(I) Qualitative impairment in social interaction, as manifested by at least two of the following:
- (A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
- (B) failure to develop peer relationships appropriate to developmental level
- (C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
- (D) lack of social or emotional reciprocity
(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
- (A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
- (B) apparently inflexible adherence to specific, nonfunctional routines or rituals
- (C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
- (D) persistent preoccupation with parts of objects
(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.
(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)
(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.”
(VI) Criteria are not met for another specific Pervasive Developmental Disorder or schizophrenia.”
“Asperger syndrome (AS) is an autism spectrum disorder (ASD), one of a distinct group of complex neurodevelopment disorders characterized by social impairment, communication difficulties, and restrictive, repetitive, and stereotyped patterns of behavior. Other ASDs include autistic disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS). ASDs are considered neurodevelopmental disorders and are present from infancy or early childhood. Although early diagnosis using standardized screening by age 2 is the goal, many with ASD are not detected until later because of limited social demands and support from parents and caregivers in early life.”
“The severity of communication and behavioral deficits, and the degree of disability, is variable in those affected by ASD. Some individuals with ASD are severely disabled and require very substantial support for basic activities of daily living. Asperger syndrome is considered by many to be the mildest form of ASD and is synonymous with the most highly functioning individuals with ASD.”
“Two core features of autism are: a) social and communication deficits and b) fixated interests and repetitive behaviors. The social communication deficits in highly functioning persons with Asperger syndrome include lack of the normal back and forth conversation; lack of typical eye contact, body language, and facial expression; and trouble maintaining relationships. Fixated interests and repetitive behaviors include repetitive use of objects or phrases, stereotyped movements, and excessive attachment to routines, objects, or interests. Persons with ASD may also respond to sensory aspects of their environment with unusual indifference or excessive interest.”
“The prevalence of AS is not well established. It is often not recognized before age 5 or 6 because language development is normal. Although ASD varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group. Experts estimate that as many as 1 in 88 children age 8 will have an autism spectrum disorder1 No studies have yet been conducted to determine the incidence of Asperger syndrome in adult populations, but studies of children with the disorder suggest that their problems with socialization and communication continue into adulthood. Some of these children develop additional psychiatric symptoms and disorders in adolescence and adulthood. Males are four times more likely than girls to have ASD.”
“Studies of children with Asperger syndrome suggest that their problems with socialization and communication continue into adulthood. Some of these children develop additional psychiatric symptoms and disorders in adolescence and adulthood.”
I would add to the above that some people diagnosed with AS in childhood or adulthood may develop mental health challenges due to the aspects of AS that can be more difficult for higher functioning people with AS wherein relating is different and in so far as that leads it to not be as successful for many with AS versus Neurotypicals (People without AS) it can create or cause enough stress and discomfort that mental health conditions arise. AS itself, however, is not a mental illness and is not well enough understood by the Mental Health Care Delivery Systems around the world.
“Some children with AS may develop anxiety or depression in young adulthood. Other conditions that often co-exist with Asperger syndrome are attention deficit hyperactivity disorder (ADHD), tic disorders (such as Tourette syndrome), depression, anxiety disorders, and Obsessive Compulsive Disorder (OCD).” – Source of this paragraph: National Institute of Neurological Disorders and Stroke
The DSM 5 merges Asperger’s Syndrome into what is now defined as the Autistic Spectrum of Disorders (ASD). This has not been viewed as particularly helpful overall and specifically not at all helpful in the understanding of Asperger’s Syndrome. Does it make sense or is it more confusing and misleading? Yet it does somewhat illustrate the acknowledgment that each individual person on the ASD may have some traits and not others. In accordance with this graphic, they may fit more so into one circle or not or be best understood by the overlapping aspects of traits.
Many professionals and people and specifically those with what was notably defined as Asperger’s Syndrome pre-DSM-5 do not see this merger of AS into the ASD spectrum of disorders as a very helpful or even practical development. “The graphic (above to the right) comes from a presentation on the new DSM 5 diagnostic criteria for autism spectrum disorders prepared by Dr. Walter Kaufmann. I like this graphic of the conceptual framework of ASD because it looks very similar to the way that I have always thought of autism. Different people can inhabit several different spheres to varying degrees but still fall within the spectrum. This is why one autistic person can be so different from another but similar at the same time.” – (Source of this paragraph: NeuroDiversity Consulting LLC
It can be argued that the changes from how Asperger’s Syndrome was (at least) defined and understood in its own right for what it is a part from other Autistic Spectrum Disorders (ASD) in the DSM-IV criteria have not been received as helpful or positive by many with AS and/or their loved ones. It can also be argued that what Asperger’s Syndrome is has been somewhat lost to merging it into this spectrum DSM-5 definition. Lots has been lost. More is confusing. Can this even be helpful for those trying to understand their children, loved ones, or adults trying to understand themselves if they do not have what was so clearly defined before as AS but rather have traits that move further along the spectrum away from the AS end, if you will, to more classic autism. All this confusing and merging many would argue has not helped in the understanding or answer to the question what is autism? Let alone, now, the question of what is Asperger’s Syndrome? What are many of the previously separately defined traits that are found all along what is now the Autism Spectrum. It is likely not being as helpful in the diagnosis of people with (what is politically/technically correct to now refer to as an) ASD. This along with the reality that those diagnosing AS or ASD still have not seen fit to create a different scale of measuring and identifying the various ways some traits present in females and the way in which many don’t as compared to males. The diagnostic scales with very little, if any, changes, do not even attempt to identify AS or ASD traits in females which are more often than not different from those seen in males. Different in number, the way they present, and intensity.
So, in quick summary then, Asperger’s Syndrome, though it still exists, technically in the DSM-5, has now been lumped in with other autistic spectrum disorders (ASD) so that it has really become less clear to many what it is and is not in comparison to other ASD diagnoses. As an adult diagnosed with Asperger’s Syndrome, I still only really identify and understand it, from my personal experience, the way it used to be described and defined by the DSM-IV. So this has provided you with a definition of what AS was (still is) but may or may not be now depending on the ASD point of view of any diagnostician. In a way, clear as mud, right? How helpful is that to our own understanding and even more importantly your understanding and the way in which those of us with AS seek to be understood in the world by others in a way that is not so stigmatizing?
For more on the confusion and definition of what Asperger’s is now (since the DSM-5) and why it is a even more so since then stigmatization of people with AS please see a blog I wrote entitled: “The Stigmatizing of Adults with Asperger’s Syndrome” at: Aspergeradults.ca