Autism in Adulthood: Widespread, Invisible, Neglected, Misunderstood-Not Our Problem?

Table 1. The median prevalence of autism in children on the basis of early epidemiological surveys

Table 2. Estimated prevalence of autism in adulthood, Adult Psychiatric Morbidity Survey

Figure 1. The author’s book on adult autism and Asperger syndrome for psychiatrists

Figure 2. Baby boy aged about 10 months holding out his arms to show that he is ready to be picked up.

Premiere Date: February 20, 2019
Expiration Date: August 20, 2020

This activity offers CE credit for:
1. Physicians (CME)
2. Other

All other clinicians either will receive a CME Attendance Certificate or may choose any of the types of CE credit being offered.

ACTIVITY GOAL

To goal of this activity is to provide a comprehensive understanding of autism in adults and what needs to be done to improve recognition, assessment and management of autism in adults.

LEARNING OBJECTIVES

At the end of this CE activity, participants should be able to:

• Define what is lacking in our understanding of adult autism

• Recognize the variation and severity of symptoms associated with autism spectrum disorder (ASD)

• Appreciate the importance of a differential diagnosis when assessing patients for ASD

• Identify the primary needs of the majority of autistic adults

TARGET AUDIENCE

This continuing medical education activity is intended for psychiatrists, psychologists, primary care physicians, physician assistants, nurse practitioners, and other health care professionals who seek to improve their care for patients with mental health disorders.

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CME Outfitters designates this enduring material for a maximum of 1.5 AMA PRA Category 1 Credi™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

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Traolach S. Brugha, MD, reports that he is the author of The Psychiatry of Adult Autism and Asperger Syndrome, for which he receives author royalties from Oxford University Press (the book is mentioned in the article as suggested reading).

Meng-Chuan Lai, MD (peer/content reviewer), has no conflicts to report.

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Do I know anyone who is autistic, perhaps mildly affected but nevertheless, significantly socially disabled? Take this case (but not literally-the following are made up scenarios).

My neighbor, a loner, is still living in the same home that his deceased parents raised him in. He is impossible to converse with. But he is harmless; habitual and regular as clockwork. He wears the same clothes all year round, regardless of weather or occasion. There are no visitors.

Or take the case of my cello teacher. She rarely looks me in the eye and is hard to read-expressionless at most times. She has an extraordinary memory for minute details and a distinctly mannerist performance style. Once she starts on her hobby horse (J.S. Bach) she rambles on and is unstoppable, doesn’t even glance at you as you say goodbye and leave.

Or take this patient whom I’ve been treating for schizophrenia-or I think that’s what it is. He describes auditory hallucinations in clear consciousness (yet shows no distress). Appears socially deteriorated but, to be truthful, I don’t know what his childhood functioning was like, or when that began. Should I be thinking maybe autism (or as some still prefer the term, “Aspergers”)? If so, what am I to do?

Recognizing autism

Autism was first described by child specialists and even today most autism-specific health and education services are designed to cater only to children. Until recently childhood prevalence seemed to be constantly increasing (Table 1).¹ Community surveys indicate that autism in adulthood is just as common as it is in childhood, although research findings go against the prevailing assumption that autism is on the rise.^2,3 Astonishingly and, importantly for us in clinical psychiatry, most cases identified in our community surveys are “invisible”-undiagnosed and unrecorded.

Contrary to previous (untested) assumptions, findings suggest that only about one in 10 adults with autism has moderate to profound intellectual disability.⁴ Also contrary to supposition, many autistic adults are in paid employment and living independently.⁵ However, there are also signs of poor quality of life. Adults with autism are less likely to be in a long-term stable relationship, more likely to be living in government supported or rented accommodations, and less likely to have achieved a higher level of education.

More is known about autistic adults seen by social services. These cases are often more complex, are more likely to have comorbid mental disorder, particularly depression, anxiety, and possibly borderline personality disorder. In adults with a diagnosis of autism spectrum disorder (ASD) a pooled estimate of any current anxiety and depression was estimated as 27% and 23% respectively.⁵ This is considerably higher than would be expected based on estimates from the general population. But how often does autism come into our adult psychiatry differential diagnosis in such cases?

It is estimated that 1 in 100 of all adults meet criteria for autism (Table 2).² In a recent, as yet unpublished, study my colleagues and I found that about 1 in 20 adults being seen in adult psychiatry services has autism-and that most cases are unrecognized. If correct, this places autism at the heart of adult general psychiatry. And it calls into question whether our discipline has kept up. If not what is there to do?

Diagnostic assessment

DSM-5 criteria for ASD require “onset in early childhood,” that manifests as persistent deficits in social communication and social interaction across multiple contexts; together with restricted, repetitive patterns of behavior, interests or activities, or variations in sensory sensitivities. It appears to be far more common in males than in females (although under-recognition in females is a growth topic⁶).

It can lead to long term social isolation and difficulties in fitting in, especially in school and employment settings throughout life. Moreover, the criteria are childhood focused and hard to apply to adults (whose developmental history may be unobtainable). Again, one might ask what to do?

It is unclear why clinicians so often to miss the diagnosis of autism in adults. One possible reason is the mistaken idea that we should only think about autism in conspicuously disabled individuals who are essentially nonverbal and display a wide range of deficits in living skills (eg, Rainman). DSM-5 rightly recommend two additional, separate, ratings in any person meeting criteria for ASD: level of impairment in every day functioning and level of general, including intellectual, ability. Other reasons why autism is missed by adult psychiatrists may be lack of on-the-job training and the lack of an effective pharmacologic treatment. (The first textbook on adult autism for psychiatrists has only just been published; Figure 1.⁷)

A quick and simple test for autism in adulthood would help but is still in the starting box. The UK National Institute for Clinical and Care Excellence systematic review of such tests has found nothing that could be clearly recommended as cost effective.^8,9

The standard clinical diagnostic assessment in adult mental health is the clinical interview with the patient. Autism assessments, however, have until now been guided by approaches used in childhood, of which an interview with a key informant, such as a parent is regarded as essential. Because current childhood derived diagnostic criteria require it, this presents a challenge when assessing adult patients. Particularly difficult is when the adult patient refuses to involve an informant such as a parent or, indeed, impossible because there is no longer anyone still living who observed the patient’s childhood social development. Therefore, adapting adult autism direct-interview approaches, such as those that work well in adult ADHD, is a necessary requirement.

Where possible, one should always also interview a parent or child-development informant such as an older sibling. For the time-pressed clinician this can quickly yield highly salient information. Key early child-developmental markers that point to autism include poor development of nonverbal communication skills, including limited use of eye gaze and gesture, prior to speech development in the child. A classic sign is the failure of a child to communicate that he or she wants to be picked up and cuddled (Figure 2). Failing to pay attention when his or her name is called may have led to a hearing test (which turned out to be normal).

Other known family informants may be able to recall how the child adapted to initial contact with peers on commencing nursery or preschool. Peers vary widely in their response to the child who may be autistic. While the autistic child may make an effort to join in, he or she will soon become isolated in solitary activities including play behavior. The child’s playing is often repetitive and lacking in make believe, ie, pretend elements (these warning signs were featured in DSM-IV but were removed in DSM-5).

Characteristics

Communication tends to be infrequent and lacking in reciprocity-if the child talks to peers it is often in a controlling, even demanding, inflexible way. Friendship formation is rare and the autistic child finds social expectations, for example at birthday parties, extremely difficult to make sense of, in spite of the efforts of parents to be supportive.

Autistic children can have exceptional concentration skills in specific areas, impressive rote learning abilities, as well as particular skills in constructional and other fine motor activities. Teachers can admire the child’s exceptional academic skills and willingness to “work away quietly.” Parents can recall the child as the best behaved of their offspring (there are also of course children with autism whose behavior is strikingly disruptive, demanding, challenging).

During the teen years and into adulthood many more-able persons on the autism spectrum dispute the concept of autism as a disorder. They contend that it is a different way of being, of thinking, and of viewing the world-neither better nor worse. One does not “have autism,” rather one is “autistic.” Their term for a non-autistic person is “neurotypical.” Neurotypicals, ie, most of us, are equally deserving of critical comment and are viewed as inconsistent, not meaning what we say, and incapable of being logical and precise.

DSM-5 criteria have also drawn attention to the often observed co-occurrence in children (and in adults) with autism of sensory sensitivity differences. These include differences in tolerance of heat or cold and of other tactile experiences such as the texture of clothing (and of food), of visual, and of auditory stimuli (such as an exceptional ability to pick up detailed sounds). For example, I recall an adult who could predict when a disk drive in the IT department of his company was about to fail because he could pick up in advance a difference in sound of the component “going down.”

Direct questions about such sensory sensitivities, together with inquiry about rigid repetitive and sometimes highly ritualized behaviors, may be a good starting point to a clinical interview with an adult whom the psychiatrist is beginning to suspect of being autistic. A crucial clinical distinction between autistic repetitive behaviors and those repetitive behaviors seen in obsessional rituals is that in the former the patient finds comfort in such behaviors and they are not accompanied by any sense of conscious resistance. In such cases our role as clinicians could be to support the person to be able to engage in such harmless behaviors as part of a series of “reasonable adjustments” that may require others in work or home settings to show understanding and acceptance. However, this policy should not be followed when such repetitive behaviors pose risks to the person or others.

Differential diagnosis, comorbidities, and treatment

Adult autism diagnostic services tend to use systematic methods for obtaining a developmental history, such as the Autism Diagnostic Interview Revised (ADI-R) or the Diagnostic Interview for Social and Communication Disorders (DISCO).^10,11 Behavior is assessed using the Autism Diagnostic Observation Schedule (ADOS).¹² The feasibility and the validity of such approaches for older patients is less certain and is only beginning to be studied.¹³ Autism, as a topic in clinical psychiatry, is all the more fascinating because of the challenges to understanding and managing autism.

A crucial issue for adult psychiatry is the differentiation of autism from other possible comorbid mental disorders and the approaches to management in such situations. For example, is the approach to assessing depression the same or different in an autistic adult? It is well recognized that people with autism fail to develop a sense of their own emotions or, at least, an ability to describe them. In relation to depression, questions about somatic changes can be used but questions about mood, feelings, emotions, will typically encounter a “brick wall,” which may be thought of as a form of alexithymia. Assessment, diagnosis, and monitoring of the outcome of depression (and anxiety) needs to be moderated accordingly.

Should we treat an adult with autism who is clinically depressed as we would someone who is not autistic? Do antidepressants work? Does therapy such as cognitive behavioral therapy (CBT) work? Most such questions have yet to be tested formally in well-designed, adequately powered clinical trials. The consensus amongst practitioners working in this area is to try to use and or adapt safely evidence-based treatments to the person with autism. To deny autistic adults the opportunity of possibly benefiting from treatments that we have no clear reason to believe will not work seems unreasonable. Therapy may require adjustment, as in the example of the difficulty the patient will probably show in describing verbally his own feelings (to say nothing of making sense of interpersonal relationships).

Medication, if used, must be prescribed with more than usual caution; it is often reported that adverse effects of psychotropic medication are common in autistic persons even at conventional dose levels. In the UK, off-label treatment is not unusual, particularly in cases where more specialized care is needed because of comorbid intellectual disability and, for example, challenging behavior. The UK National Institute for Clinical and Care Excellence provides up-to-date guidance on care and treatment but acknowledges that there are no accepted, evidence-based interventions that can be recommended for treatment of autism in adults.⁸ The interventions are largely based on recommendations made in adult intellectual disability practices. In a systematic review to identify outcome measures, only 20 small-scale trials were found and most involved pharmacologic interventions.¹⁴

The psychiatrist’s role

Any interventions for autism, whether prevention or treatment based, need to pay attention to its causes and underpinning mechanisms. Epidemiologically verified twin studies show autism is substantially inherited. Based on my clinical experience, with just a little interviewer probing, almost every case will reveal a relative (suspected if not having a verified diagnosis) as being “somewhere on the autism spectrum”-clearly more so than for bipolar disorder. But the mechanisms of inheritance are highly complex with little prospect of early “easy” breakthroughs in genomically designed prevention or treatment.

Developmental brain abnormalities are implicated but there is little certainty as to what these are. A compelling theory in neuropathology research proposes that autism is explained by a deficit in connectivity of neural circuits within different brain regions, which result in inadequate integration of information from the environment. Equally compelling are neuropsychological theories that point to deficits in “mirroring” to explain impaired theory of mind ability.

Environmental causes (from conception onwards) are also poorly understood and no one cause has been found with substantial, specific, and preventable effects. This somewhat discouraging appraisal places autism in the same place as other lifelong disabilities with few early, foreseeable, prospects of treatment.

The psychiatrist’s role must therefore be to help identify autistic individuals and to advocate changes that make their life better. Foremost is to enable them to live independent lives according to their own choices and preferences.

It is becoming apparent that the majority of the adults on the autism spectrum are not complex, multimorbid, or otherwise extremely disabled persons. Therefore, the time has come to devote some of our energies and resources to this, until now ignored, large group who, with a modicum of understanding and support, could live better, safer (less vulnerable), and more productive lives.

This requires a more precise diagnosis (for example, not mixing up autism, chronic depression, anxiety). For patients and for those, if any, who continue to care for them, there is the relief of knowing that there is an explanation for their odd unsocial existence and preference for time spent on seemingly obsessive fascinations in unshared company. For autistic adults who are employed, there is the prospect of acceptance; and following a few reasonable workplace adjustments could lead to reduced absenteeism.

Conclusion

Accepting and adapting society around an emergent, increasingly recognized disability is a mark of civilization. Several European countries are taking note of this and beginning to respond with public policies that aim to make reasonable society-wide adjustments for autism. In England, the UK Autism Act 2009, makes provision for the needs of adults on the autism spectrum. It was the first ever disability-specific legislation to be passed.

In March 2010 the London Government produced an adult autism policy: “Fulfilling and Rewarding Lives: The Strategy for Adults With Autism in England.” The implementation group, chaired by a government health minister, has been working with both health and non-health government departments (education, welfare, labor, housing, criminal justice). The goal is to ensure that public-service workers are aware of autistic adults and are able to point them to appropriate resources. Similar legislation and government-wide policy change is being developed in other countries including Ireland, Scotland, and Wales.

In the US, Hillary Clinton advocated for an epidemiological survey of adults to be undertaken by the Centers for Disease Control. She was the driving force behind the first-ever adult autism prevalence study in the US, “so that we improve our understanding of how to identify, serve, and support adults on the autism spectrum.”¹⁵ This call to action is mirrored in the widespread concerns of parents who have an autistic child moving inexorably into an adult world with few if any appropriately adapted services. However, there is much that we as clinicians can do to respond to this burden of unmet need.

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Disclosures:

Professor Brugha is Professor of Psychiatry, University of Leicester, and Consultant, Leicestershire Partnership NHS Trust, Leicester, UK.

References:

1. Baio JW, Christensen DL. Prevalence of autism spectrum disorder among children aged 8 years. MMWR Surveill Summ. 2018;67:1-23.

2. Brugha TS, McManus S, Bankart J, et al. Epidemiology of autism spectrum disorders in adults in the community in England. Arch Gen Psychiatry. 2011;68:459-465.

3. Lundstrom S, Reichenberg A, Anckarsater H, et al. Autism phenotype versus registered diagnosis in Swedish children: prevalence trends over 10 years in general population samples. BMJ. 2015;350:h1961.

4. Brugha TS, Spiers N, Bankart J, et al. Epidemiology of autism in adults across age groups and ability levels. Br J Psychiatry. 2016;209:496-503.

5. Hollocks MJL, Magiati, I, Meiser-Stedman R, Brugha TS. Anxiety and depression in adults with autism spectrum disorder. Psychol Med. September 4, 2018; Epub ahead of print.

6. Lai MC, Lombardo MV, Auyeung B, et al. Sex/gender differences and autism: setting the scene for future research. J Am Acad Child Adolesc Psychiatry. 2015;54:11-24.

7. Brugha TS. The Psychiatry of Adult Autism and Asperger Syndrome. Oxford University Press; 2018.

8. National Institute for Health and Clinical Excellence. The NICE on Autism: Recognition, Referral, Diagnosis and Management of Adults on the Autism Spectrum. 2012. https://www.nice.org.uk/guidance/cg142/evidence/full-guideline-186587677. Accessed December 20, 2018.

9. Wigham S, Rodgers J, Berney T, et al. Psychometric properties of questionnaires and diagnostic measures for autism spectrum disorders in adults. Autism. February 1, 2018; Epub ahead of print.

10. Lord C, Rutter M, Le Couteur A. Autism diagnostic interview-revised: a revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. J Autism Dev Disord. 1994;24:659-685.

11. Wing L, Leekam SR, Libby SJ, et al. Diagnostic interview for social and communication disorders: background, inter-rater reliability and clinical use. J Child Psycho Psychiatry. 2002. https://onlinelibrary.wiley.com/doi/10.1111/1469-7610.00023. Accessed December 20, 2018.

12. Lord C, Rutter M, DiLavore PC, Risi S. Autism Diagnostic Observation Schedule, 2nd ed. Torrance, CA: WPS; 2002.

13. Brugha TS, McManus S, Smith J, et al. Validating two survey methods for identifying cases of autism spectrum disorder among adults in the community. Psychol Med. 2012;42:647-656.

14. Brugha TS, Doos L, Tempier A, et al. Outcome measures in intervention trials for adults with autism spectrum disorders; a systematic review of assessments of core autism features and associated emotional and behavioral problems. Int J Methods Psychiatr Res. 2015;24:99-115.

15. The Office of Hillary Rodham Clinton. Autism. https://www.hillaryclinton.com/issues/autism. Accessed December 20, 2018.

16. Brugha TS, Cooper SA, Gullon-Scott F, et al. Autism spectrum disorder. In: Adult Psychiatric Morbidity Survey 2014, Chapter 6. Health and Social Care Information Centre, Leeds. https://digital.nhs.uk/data-and-information/publications/statistical/adult-psychiatric-morbidity-survey/adult-psychiatric-morbidity-survey-survey-of-mental-health-and-wellbeing-england-2014. Accessed January 7, 2019.