With reference to someone who has a reasonably good job and who copes easily with day-to-day tasks of living (cooking, cleaning, travelling etc) but who has no friends (or very few), very little social life, and is very reticent about engaging in conversation beyond basic pleasantries and technical work conversations with colleagues - is there any benefit in seeking an autism/Aspergers diagnosis as an adult?
Autism spectrum disorder (ASD) manifests in early childhood and is characterised by qualitative abnormalities in social interactions, markedly aberrant communication skills, and restricted repetitive behaviours, interests, and activities (RRBs). It is primarily considered a childhood disorder; however, it is not necessarily a childhood disorder. Autistic spectrum disorders can be and should be diagnosed even in adults, and there are always benefits of diagnosing them rather than not doing so. The National Autistic Society of the United Kingdom declare, in their official website, the following information regarding the benefits of a formal diagnosis for adults:
Benefits of a diagnosis
Some people see a formal diagnosis as an unhelpful label, but for many, getting a timely and thorough assessment and diagnosis may be helpful because:
it may help you (and your family, partner, employer, colleagues and friends) to understand why you may experience certain difficulties and what you can do about them.
it may correct a previous misdiagnosis (such as schizophrenia), and mean that any mental health problems can be better addressed (however, it can be difficult to make a diagnosis of autism where there are severe mental health issues, or where someone is receiving treatment).
it may help you to get access to appropriate services and benefits your employer will be required to make any necessary reasonable adjustments.
it may help women, and those with a demand avoidant profile, who may not before have been recognised as autistic by others you can join the autism community – you don't need to be diagnosed to join our online community or subscribe to our Asperger United magazine, but you might need a diagnosis to join some social groups.
Your question provides some important information as you describe your case with the following words:
… someone who has a reasonably good job and who copes easily with day-to-day tasks of living (cooking, cleaning, travelling etc) but who has no friends (or very few), very little social life, and is very reticent about engaging in conversation beyond basic pleasantries and technical work conversations with colleagues …
The person described above has reasonably good job and copes easily with day-to-day tasks of living (cooking, cleaning, travelling etc) despite having features that may lead to a diagnosis of autistic spectrum disorder. Should such a person in his adult life look for a formal diagnosis? The National Autistic Society has already answered the question:
It’s quite common for people to have gone through life without an autism diagnosis, feeling that somehow they don't quite fit in. Many people learn to cope with life in their own ways, although this can be hard work. They might be married or living with a partner, have families or successful careers. Others may be more isolated and find things much more of a struggle.
It is up to you whether you decide to seek a diagnosis and some people are happy to remain self-diagnosed. The only way to know for sure whether you are autistic is to get a formal diagnosis.
On the information we have discussed above, I shall suggest that the person concerned seek a formal diagnosis, if he has not already been diagnosed, and receive the help that would surely improve the quality of his life with regard to social and interpersonal interactions.
Autism in adults shall be an important health related issue; accordingly, the National Institute for Health and Care Excellence (NICE) has published its guideline on autism in adults: Autism spectrum disorder in adults: diagnosis and management in June 2012, and it was last updated in August 2016. The National Health Service of the United Kingdom (NHS) follows the NICE guideline to ensure that the diagnosis and management of Autism Spectrum Disorder in adults is carried out in a regular and consistent manner across the country. Moreover, the Department of Health also issued its statutory guideline: Statutory guidance for Local Authorities and NHS organisations to support implementation of the Adult Autism Strategy in March 2015 in that mission.There is always help for people in need.
There are many reasons as to why an individual might seek a formal diagnosis of Autism or Asperger’s Syndrome (AS). For some, it may increase self-awareness to some degree for the sake of possibly capitalizing on one's strengths and managing areas of challenge. For others who qualify, an individual may seek a diagnosis to obtain additional means of support. In order to qualify for disability benefits under most US government financial assistance programs, a formal diagnosis is also required.
The Social Security disability insurance program pays benefits to disabled individuals and certain family members if the individual has worked long enough and has paid Social Security taxes. The Supplemental Security Income (SSI) program pays benefits to disabled adults and children who have limited income and resources. For more information about the Social Security disability evaluation process, see: ‘Disability Evaluation Under Social Security, 12.00 Mental Disorders - Adult' and ’Disability Planner: How We Decide If You Are Disabled'. Additionally, under the Americans with Disabilities Act (ADA), a diagnosis is necessary in order to request reasonable accommodations for individuals seeking employment. A publication by the U.S. Equal Employment Opportunity Commission titled, ‘Facts about the Americans with Disability Act,’ elaborates:
Title I of the Americans with Disabilities Act of 1990 prohibits private employers, state and local governments, employment agencies and labor unions from discriminating against qualified individuals with disabilities in job application procedures, hiring, firing, advancement, compensation, job training, and other terms, conditions, and privileges of employment. The ADA covers employers with 15 or more employees, including state and local governments. It also applies to employment agencies and to labor organizations. The ADA's nondiscrimination standards also apply to federal sector employees under section 501 of the Rehabilitation Act, as amended, and its implementing rules.
The same publication also states a relevant piece of information to take note of regarding the provision of reasonable employment accommodations for disabled individuals.
An employer generally does not have to provide a reasonable accommodation unless an individual with a disability has asked for one.
AS is now widely believed to be among a group of conditions associated with Autistic Spectrum Disorder (ASD). The National Institute of Neurological Disorders and Stroke's 'Autism Spectrum Disorder Fact Sheet,' elaborates,
The term “spectrum” refers to the wide range of symptoms, skills, and levels of disability in functioning that can occur in people with ASD. Some children and adults with ASD are fully able to perform all activities of daily living while others require substantial support to perform basic activities. The Diagnostic and Statistical Manual of Mental Disorders (DSM-5, published in 2013) includes Asperger syndrome, childhood disintegrative disorder, and pervasive developmental disorders not otherwise specified (PDD-NOS) as part of ASD rather than as separate disorders. A diagnosis of ASD includes an assessment of intellectual disability and language impairment.
By the same token, a test called the Autism Spectrum Quotient (AQ), created by Simon Baron-Cohen, Professor of Developmental Psychopathy at the University of Cambridge was developed to measure the degree to which an adult with normal intelligence has autistic traits.
The Autism Research Centre, provides further details on the Adult AQ (Autism Spectrum Quotient).
Our studies have shown that people with a clinical diagnosis tend to score above 32 out of 50 on the AQ, first-degree relatives tend to score higher than average on the AQ, males in the general population tend to score higher than females, and scientists tend to score higher than non-scientists on the AQ. We have also found the AQ shows heritability (from twin studies) and cross-cultural stability, and that it predicts clinical diagnosis.
Moreover, The Autism Research Centre also recognizes that at best, the AQ is
…a screening instrument - it is not itself diagnostic.
An article titled ‘Screening Adults for Asperger Syndrome Using the AQ: A Preliminary Study of its Diagnostic Validity in Clinical Practice,’ evaluates the AQ for its potential as a screening questionnaire in clinical practice on one hundred consecutive referrals to a diagnostic clinic for adults suspected of having AS or high functioning autism (AS/HFA).
We believe our results support the AQ as a useful screening instrument in clinical practice. It provides a quick and reliable method of determining the likelihood of any individual falling on the higher functioning end of the autistic spectrum and warranting further, more detailed, assessment.
However, there may be a percentage of individuals who potentially possess many autistic traits but who do not require any clinical support and thus, do not seek diagnosis…
…because of a good cognitive match between their cognitive style or personality, and their family or occupational or social context. In this sense, whether a high AQ score becomes disabling may depend on environmental factors (tolerance by significant others, or being valued for contribution at work, or a place in a social network, protecting against the risks of secondary depression) rather than solely on factors within the individual.
Also, there is increasing evidence that by diagnosing even relatively late
…much can still be done to effectively manage the social impairments and facilitate better social inclusion.
In conclusion, results of the same study indicate that the AQ test
…has a good discriminative validity and good screening properties at a threshold score of 26.
In lieu of the information provided, an Asperger/Autism Network (AANE) article titled, ‘Asperger/Autism Spectrum Diagnosis in Adults,’ advises individuals to
Keep in mind that the Asperger/Autism Spectrum diagnosis is not an absolute and fixed category of traits and characteristics. Everyone with this profile looks different and therefore the boundaries around this characterization can be challenging to define.
While most individuals with AS can be affected by some common traits, the intensity of each trait lies along a spectrum. Hence, the extent to which AS shapes a person’s life and experiences can vary greatly from person to person. With that being said, it is highly advisable that the individual in question consults his or her primary care physician or qualified specialist for a thorough assessment, testing, diagnosis, and treatment, if needed.
Two nice answers already, but both marching into the same direction. To round off the picture, this is the advocatus diaboli:
While the existence of a diagnosis in general demands its application onto some individuals, some of those might indeed benefit from receiving such a diagnosis.
Asperger’s disorder: A review of its diagnosis and treatment: Although Asperger’s disorder has a preschool age of onset, it is important to tailor treatment based on the patient’s age. Parents of children with the condition become generally aware of problems in their child’s development around 30 months of age; however, they may experience significantly longer delays and greater frustration in obtaining a confirmation of diagnosis from clinicians. The practical implications of delayed diagnosis may affect adversely the prognosis in the case of the more able children with Asperger’s disorder. […]
In the adult years, patients with Asperger’s disorder may experience increased anxiety due to stresses associated with independence and vocational demands. Educational and behavioral inclinations can be aimed at problem-solving strategies, self-understanding strategies, and management of anxiety and other comorbidity. […]
From the conclusion: Awareness of Asperger’s disorder’s distinctive clinical features and understanding of its historical background, epidemiology, and course, could eventually lead to more effective evaluation and management of these patients. Although the validity and usefulness of an Asperger’s disorder-specific diagnostic concept is far from resolved, it is our hope that this review will assist clinicians in evaluating and managing patients with this lifelong disorder and subsequently improve their long-term prognosis.
That means that the criteria for diagnosis are far from perfected and since it was already correctly noted, these imprecisions are on a spectrum with increasing difficulties to establish valid diagnostic criteria at the extreme ends of this spectrum. It is further complicated by the research focus being mainly on childhood problems and treatment. Adult Asperger's is far less researched and conclusions might be clouded by simply transposing findings from childhood Asperger's onto Adults.
So, are there really "benefits" from being diagnosed AS as an adult? There sure are some! But benefits often come with a cost. These have to be considered in an informed decision making process.
With increasing demands on clinical services to assess for the possibility of Asperger Syndrome, as demonstrated by the large number of referrals currently received at our clinic in Cambridge, it is important to be able to identify those people who are most likely to have AS. We believe our results support the AQ as a useful screening instrument in clinical practice. It provides a quick and reliable method of determining the likelihood of any individual falling on the higher functioning end of the autistic spectrum and warranting further, more detailed, assessment. We suggest that a more conservative threshold score of 26 would ensure that false negatives are limited, and equally avoid cases ‘slipping through the net’.
However, if the AQ were being used in a general population screen (and the ethical case for such a use has yet to be demonstrated) the higher cut off of 32 is likely to minimise false positives. We suspect that this is because in the general population there may be a percentage of individuals who have many autistic traits but who do not require any clinical support (and are not seeking this) because of a good cognitive match between their cognitive style or personality, and their family or occupational or social context (Baron-Cohen, 2003). In this sense, whether a high AQ score becomes disabling may depend on environmental factors (tolerance by significant others, or being valued for contribution at work, or a place in a social network, protecting against the risks of secondary depression) rather than solely on factors within the individual. This impression warrants systematic research.
Of importance is that seventy-five percent of the patients seen in the clinic had been referred by their general practitioner. This figure represents all suspected cases referred by primary care practitioners as no one was excluded simply based on their AQ score.
Therefore our results are also relevant in the primary care setting where, as a result of increasing awareness of autistic spectrum conditions, there is likely to be an increase in the numbers of patients seeking assessment. The GP has the difficult task of deciding who should be referred on for in-depth assessment. We believe the AQ will facilitate this process, and is particularly useful in this setting as it is a relatively quick and easy to use screening instrument. There is increasing evidence that by diagnosing even relatively late much can still be done to effectively manage the social impairments and facilitate better social inclusion.
That seems to indicate a certain 'trend' seen in clinical settings: with increasing awareness of the existence of this 'syndrome' or 'situation' or 'condition'. This is not to say it is a fad or fashionable label to attach to someone or her behaviour. But some psychological or psychiatric diagnosis approaches clearly fell out of fashion some time ago. Recently few women were diagnosed with hysteria and officially even fewer people are now 'treated' for being homosexuals.
‘How can a chord be weird if it expresses your soul?’ Some critical reflections on the diagnosis of Aspergers syndrome: This paper questions the way in which the diagnosis of Aspergers syndrome has come to be widely accepted and used as an essentially medical category. It does so by drawing upon sociological and historical analyses of society, psychiatry and psychology, as well as the writings of service users, other practitioners in the autistic spectrum disorder field and the author’s own clinical experience. It is argued that the seeming popularity of this label within Western society may have as much to do with widespread social and cultural change during recent decades as with the supposed deficits of those who attract the diagnosis. The aims are to ask what this might mean for health and social care practice in this field and to encourage the growth of theories and approaches that are grounded more firmly in an awareness of the social environment, while also reflecting the varied experiences and standpoints of people who carry this label.
Conclusions As a worryingly elastic diagnostic label, Aspergers syndrome seems to be capable of extension to a wide range of individuals who might otherwise have little in common save their isolation, their apparent interpersonal awkwardness, their dislike of change and, in a socially and vocationally competitive age, the understandable concern of their families. Of course, it has to be acknowledged that for many the diagnosis has its uses. For those who are able to negotiate the current health and social care systems acquisition of this label may open up pathways towards financial and material assistance and also towards improved personal assistance at school, college or work, all of which may be badly needed and, when made available, may make the person’s world an altogether more benign place. There may also be some advantage to being diagnosed with Aspergers syndrome, where the alternatives might include the more pejorative labels of ‘psychosis’ or ‘schizophrenia’.
And yet this kind of intervention and support can come at a price. Erstwhile helpers can become focused upon imparting narrow psychological or social skills based ‘solutions’ at the expense of seeking a broader understanding of the social and familial roots of the individual’s problems or of trying to challenge conventional ideas of what is normal or natural (Molloy and Vasil 2002). While there are no medical treatments aimed specifically at Aspergers syndrome, the indications of high rates of psychiatric drug prescribing for people in this group is worrying. This is a situation that cannot be altogether unwelcome to drug manufacturers keen to market their wares and the suspicion that autistic spectrum disorders are being widely promoted with an eye to future developments in pharmaceutical technology, or simply as a way of finding an expanded market for currently available products, is not altogether implausible (see, for instance, D. Boyle 2003).
Given the doubts about the coherence and validity of the diagnosis, there is the nagging thought that in many, and perhaps most, instances what we are talking about is not so much a clearly demarcated ‘developmental disorder’ as a spectrum of character traits or dispositions that fit poorly with the ethos of our current business and consumer culture. More frequently than is recognised, the ‘problems’ presented by Aspergers syndrome may lie in a world that increasingly struggles to accept any form of difference from the notional norm unless, of course, such difference can be repackaged as a form of deviancy, illness or developmental difficulty, ready and waiting to be ‘managed’ by a set of self-appointed experts.
Perhaps as health professionals and even as friends and relatives of ‘people with Aspergers syndrome’ we might, in the words of one service user, try to embrace the sentiments expressed by the singer Joni Mitchell, who is reputed to have said in defense of one of her tunes ‘How can a chord be weird if it expresses your soul?’ Such acceptance (and the ability to genuinely listen that implicitly goes with it) would surely not represent anything like a complete answer to the difficult and complex questions that have been raised here, but it might be a good place to start.
To sum it up: if it ain't broke, don't fix it.