Asperger’s Syndrome – Medical Overview & Social Implications

Editors: Cristina Voinea, Albert Vamanu

Abstract

How much do you know about Autistic Spectrum Disorders? Did you know that Asperger’s Syndrome lies on the same spectrum? Do you know why? How about their social and professional integration? I guess this is what we will reveal today. The purpose of this article is to share some knowledge on this topic and raise awareness of the fact that we are unique individuals and deserve the same respect. We all have unlocked potential and comes to us, humans to make sure everybody has the chance at showing it.

Introduction

According to the Mayo Clinic, “Autism Spectrum Disorder is a condition related to brain development that impacts how a person perceives and socializes with others, causing problems in social interaction and communication. The disorder also includes limited and repetitive patterns of behavior.” It is given that socially speaking, ASD patients are constantly and unconsciously marginalized based on their difficulty in communicating. I believe people do that because they fear the unknown. It is simple to follow the rules and norms, whereas when straying away from the norm people tend to be skeptical. (Mayo Clinic – Mayo Clinic, 2020)

Alongside the ontogenesis of child-adult, we must reach some developmental milestones. We gradually develop our attention and memory, we learn how to speak and communicate, how to recognize emotions, or what to do when faced with a problem, These are processes developed by our brains when growing up, which we are highly dependent on in daily life. If one of these skills does not evolve properly, we call it a neurodevelopmental disorder. The impediment in communicating and socializing often results in anxiety, depression, and self-isolation, very common among people with ASD.

In 1994, the fourth edition of the Diagnostic and Statistical Manual for Mental Disorders (DSM-4) introduced ‘Asperger disorder’ as an individual diagnostic category and distinguished it from ‘autistic disorder’ by a lack of significant delay in language and general cognition. For about two decades, there was a lot of confusion when trying to differentiate Asperger’s disorder from high-functioning autism and many researchers have argued that the criteria for Asperger syndrome in the DSM-IV are flawed and hard to implement in practice. Many studies have been conducted and, in 2013, the DSM-5 Working Group on Neurodevelopmental Disorders decided that there was insufficient evidence to support a clear distinction between the two, placing both diagnoses on the Autism Spectrum Disorders. Francesca Happé, Professor of Cognitive Neuroscience at Kind’s College London, said that the DSM-5 did not intend to blur important boundaries among groups, but to ensure that individuals are described in terms of their specific pattern of needs, rather than fitting them into narrow categories that they do not really match. For this reason, many individuals previously diagnosed with Asperger’s disorder now receive a diagnosis of “autism spectrum disorder without accompanying intellectual or language impairment”.

“You can only see it when you know about it”. This holds true for the condition that we have been calling “autism” for the past eight decades since the first reports in the 1940s of the past century. But that does not mean that the condition since then called autism had not been around for ages already as an evolutionary trait.

Asperger’s syndrome (AS) is a “highly-functional” subtype of Autism Spectrum Disorder (ASD), a pervasive developmental disorder characterized by deficits in social and nonverbal communication, together with limited and repetitive forms of behavior and interests. What distinguishes AS from the better-known autism and the other subtypes of ASD is the selectively preserved language and cognitive abilities that people with AS have.

The estimated prevalence of AS is at 6/10,000, recognizing the strong limitations of available data on AS. In the 1980s, the estimated male: female ratio in Asperger’s syndrome was 10:1, the widespread explanation for this being that females might be scarcely affected by ASDs in general, but when affected, were more severely impacted (eg. having also an intellectual disability). More recently, the evidence is accumulating that this belief is wrong, suggesting that females are diagnosed later than males, and require higher symptom display for diagnosis. This is mostly because autistic women seem to be modifying their behavior to fit in and pass as “neurotypical” through camouflaging and compensation.

Because children with AS develop language and self-help skills on time, the diagnosis of AS is commonly made later than the other subtypes on the spectrum, often as late as 11 years. As Asperger first noted in his paper, children with AS tend to talk before they walk and parents remain unconcerned until the child enters preschool or other settings where impairments in social reciprocity surface. They are routinely unable to use various nonverbal behaviors, such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction. They fail to develop peer relationships appropriate to their developmental level, but not because of a lack of interest, but simply because they are not born with the set of skills required to do so. They lack the spontaneous desire to share enjoyment, interests, or achievements with other people and have a shortage of social or emotional reciprocity.

These social impairments co-occur with at least one impaired area in terms of behavior, interests, and activities where individuals with AS have repetitive and stereotyped patterns. They have a narrow focus of interests, often restricted to unpragmatic and highly original themes combined with overachievement in specific branches of science (e.g. mathematics, astronomy, physics, engineering). Another common trait is their inflexible adherence to specific routines or rituals; and motor clumsiness.

Although they have precocious language acquisition with excellent basic language skills (e.g., vocabulary, grammar), they display subtle abnormalities of verbal and non-verbal communication (e.g., atypical syntax, pedantic vocabulary and stereotyped intonation when speaking).

Although a clear cut cause for Asperger’s syndrome has not been identified yet, there are a lot of factors incriminated, the strongest one to date being the genetic heritability. Furthermore, advanced paternal and maternal age, birth complications (e.g., preterm birth, low birth weight), and certain exposures in the mother’s womb (e.g., alcohol, smoking, virus infections) seem to have some sort of implication.

Recent functional-MRI studies have confirmed that the brains of individuals with AS are different: they are bigger, there has a poor disruption of unnecessary brain connections (a process that normally occurs in the second year of life) and they have a reduced cell number in regions crucial for information processing, such as the hippocampus, amygdala, and cerebellum.

People with AS have deficits in a wide range of cognitive skills, skills we use without even realizing how crucial they are for communicating and interacting with others and for planning all kinds of aspects in our lives to be able to reach future goals.

One theory that tries to offer an explanation for this deficit developed around the concept of “Theory of Mind”, the ability to attribute mental states (e.g., desires, interests, beliefs) to oneself and others to understand and predict behavior. For example, an individual with a weak-developed theory of mind might be unable to understand why a friend is grieving for a relative’s loss or might say something very inappropriate and out of context in this situation.

The second theory is the so-called “weak central coherence”. Central coherence is the ability to “see the big picture” and to understand the context. Currently, the generally accepted idea is that individuals with Asperger’s process information in a fractional, detail-focused way. An appealing finding trying to explain this is that of Just et al. (2004), who found that those with ASD have different patterns of brain connectivity. While neurotypical individuals also develop connections between non-adjacent brain regions and use them for higher levels of information processing, those with ASD tend to stick to the far less mature “short-range” local connectivity patterns as seen in very young children.

Another theory is that of Simon Baron-Cohen’s Empathizing–Systemizing (E–S). He conducted studies on children aged 8-11 years with Asperger’s syndrome and postulated that they revealed below-average empathy and average or above-average systemizing when processing information. *

When it comes to treatment, it must be noted that to date no “cure” for Asperger’s syndrome has been found. but precocious psycho-educational interventions can improve functionality and quality of life. They teach strong linguistic abilities and a solid cognitive style by establishing straightforward directives to guide behavior; moreover, they teach explicit verbal scripts to apply in social settings. There are also peer-support groups for learning social skills, in which participants discuss their own social experiences and those of other participants. Furthermore, they facilitate creating social motivation for peer connection. Psychotherapy using a more problem-oriented ‘life-coaching’ approach can also be productive and increasing evidence supports the effectiveness of cognitive-behavioral therapies for AS.

There is consensus on the fact that AS is a developmental condition that evolves as age progresses. While adolescents with Asperger’s eventually develop strategies for meeting up social expectations and have continuous support from their parents, peers, and teachers, the shift from later adolescence to adulthood can bring a new set of considerations not likely experienced earlier in their lives. It should be acknowledged that adults with AS are not simply larger versions of themselves as children and the various phases of adulthood and adult life impact those with AS as they do all of us. For example, graduating high school often means leaving a network of peers for adolescents with AS and they might encounter difficulties in creating or expanding social networks outside this context. Moreover, they can face challenging developmental tasks, such as the independent management of personal finances or balancing work, personal interests, and leisure.

In 2011, the Office of National Statistics household survey showed that the prevalence of ASD in adults was the same as in children, yet there is still a paucity of research with adults and particularly with older adults. A new phenomenon arose along with descriptions of highly intelligent “Asperger” adults: when reading on the topic, parents of recently diagnosed autistic children would recognize themselves.

A key debate in the field of autism identity is whether autism is a disability/deficit that needs to be ameliorated and ‘cured’ (the medical model) or a difference that needs to be recognized, celebrated and that much of the amelioration needed is to address the barriers imposed by society (social model). Related to this is the neurodiversity perspective, which argues that calling autism a neurodevelopmental ‘disorder’ is wrong; autistic ways of thinking and being are not deficits but rather part of human variation that should be celebrated (Kapp et al. 2013). A thematic analysis of articles in the magazine Asperger United (AU) authored by autistic people supported criticisms of the medical model of autism, specifically that internalizing this view of autism as part of one’s self-identity can be potentially harmful (Milton and Sims 2016). The authors posited that the neurodiversity perspective can help autistic people to focus on the diversity of their strengths and interests as well as their challenges and that in this context benefit from connections with those more similar to themselves.

 Now that we have the syndrome description, behavior, and statistics, let’s see how society integrates people with AS into the community and the professional world.

According to Tony Attwood, working with people with AS is possible, even productive. The key to this is the deep understanding of the syndrome and its behavior. If years ago, human resources departments were scared of social integration, company culture, and belonging regarding people with Asperger’s, in 2020 things have changed.

Indeed, there is still hesitance among many companies and sectors, but the good part is the professional environment has changed drastically in the last couple of years. We see public actions such as The Valuable 500 where its CEO, Caroline Casey, fights for people with impairments for theirprofessional integration. We also have recruitment companies supporting people with such conditions to land a job. The fortunate situation and why are all these companies doing so much, it is because there is a big possibility for everybody to be accepted in today’s society and there is a veridic place for all to be included.

This change began once the benefit of technology allowed us to be more flexible. Meaning, people have now the possibility to work from home in a relaxed home environment where they feel at ease with no social anxiety. Being productive from home or from any place that gives them comfort created a window for a multitude of sectors, conditions, and people to extract benefits. Therefore, sectors as computer science, IT, consulting, engineering, etc, jumped on board hiring people with AS benefitting from the cut of costs of keeping somebody in the office. This way they started offering people the possibility to work from home as well as nurturing the social integration of people with AS. From a marketing and reputational point of view, these industries/companies grew to be wanted, respected, and supported by governments and society.

Here is Paul, sharing some light on the professional life of a person with Asperger’s. Being diagnosed with AS at the age of 30, he decided to share his journey with all of us. He states „Yes, I know, I don’t look autistic. That’s exactly why I started this blog because if I didn’t show you, you would never know.” Just as Cristina said: “You can only see it when you know about it” (Asperger’s From The Inside, 2020)

 Conclusion

To have “an autistic intelligence” – i.e. a skewed, methodical, strictly logical way of thinking – is not always a cause for suffering. It has become evident that much of the scientific and technical progress of the human race has come from brilliant individuals with this sort of intelligence (from medieval monks through Newton and Einstein to all those involved in the computer technology progress). Thus, many of the scientists and engineers (male and female) have more than a touch of autism. In other words, next to a lot of impairment and consequent difficulties and distress, autism over the years has undoubtedly been an evolutionary asset. This new perspective on autism has surely been of great advantage for the self-awareness and pride of individuals with ASD.

 References

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5691167/ – Behavioral, Cognitive and Neural Markers of Asperger Syndrome, 2017

https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders

https://link.springer.com/article/10.1007/s10803-018-3792-6 – Development and Validation of the Camouflaging Autistic Traits Questionnaire (CAT-Q), 2018

https://onlinelibrary.wiley.com/doi/abs/10.1111/jcpp.13176: Annual Research Review: Looking back to look forward–changes in the concept of autism and implications for future research by Francesca Happe and Uta Frith, 2020

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4725185/: A Concise History of Asperger Syndrome: The Short Reign of a Troublesome Diagnosis, by J. B. Barahona-Corrêa and Carlos N. Filipe, 2016

Asperger Syndrome, Second Edition: Assessing and Treating High-Functioning Autism Spectrum Disorders, 2014, edited by James C. McPartland, Ami Klin, Fred R. Volkmar

The Neuroscience of Autism Spectrum Disorders, 2013, by JOSEPH D. BUXBAUM and PATRICK R. HOF

Autism Spectrum Disorders in Adults, 2017, edited by Bernardo Barahona Corrêa and Rutger-Jan van der Gaag

Ronne, E., Johnson, M. and Bernstein, R., 2017. DSM 5 Medical Coding. Newburyport: BarCharts, Inc.

Tantam, D., 2004. OASIS Guide to Asperger Syndrome: Advice, Support, Insights, and Inspiration • A Parents’ Guide to Asperger Syndrome and High-Functioning Autism: How to Meet the Challenges and Help Your Child Thrive. Psychiatric Services, 55(11), pp.1327-1328.

Willey, L., 2015. Pretending To Be Normal. London: Jessica Kingsley Publishers.

The Valuable 500. 2020. The Valuable 500. [online] Available at: <https://www.thevaluable500.com/> [Accessed 3 May 2020].

Mayoclinic.org. 2020. Mayo Clinic – Mayo Clinic. [online] Available at: <https://www.mayoclinic.org/> [Accessed 3 May 2020].

 You can all find Cristina Voinea on Twitter @cristinavoinea6 and Instagram @crisstinav

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