Supporting the Lost Generation of Adults with Autism

This article explores three key issues for clinicians to consider when supporting adult clients with autism.  

Introduction

In the last article in our neurodivergent series we considered how to identify the “lost generation” of adults with autism – those who were not diagnosed as children – and noted that common presenting problems in adulthood are mental health challenges (Green et al., 2019; Jadav & Bal, 2022).

In this article we will explore three key issues for clinicians to consider when providing therapeutic support to this client population:

1. Evidence-based recommendations to treat mental ill-health
2. Autistic burnout and misdiagnosis of mental disorders, and
3. How the therapeutic alliance might be affected by the “double empathy problem”.

Treating mental ill-health

Clinicians have known for some time that adults with autism have significant co-morbid psychiatric disorders. However, a recent systematic review and meta-analysis has allowed the scale of the challenge to be quantified (Lugo-Marín et al., 2019). The pooled prevalence of any psychiatric disorder in adults with autism spectrum disorder (ASD) is 54.8%, meaning that more than half of adults with autism have a co-occurring mental disorder – a figure higher than the general population. The same research identified:

• Attention deficit hyperactivity disorder (ADHD) is the most prevalent comorbidity, affecting 25.7% of adults with ASD
• The prevalence of mood disorders is 18.7% with depression spectrum disorders occurring most frequently. Bipolar disorder is also relatively frequent among adults with ASD, and
• The prevalence of anxiety disorders in 17.8%, with social anxiety disorder, obsessive-compulsive disorder and adjustment disorder being the most common.

Other research has shown that rates of non-suicidal self-injury (self-harm) are significantly higher in people with autism (Maddox et al., 2017). There is also a higher risk of suicidality including suicidal ideation, attempts and deaths by suicide (Hedley & Uljarević, 2018; Hedley et al., 2018).

The consequences of untreated mental ill-health for people with autism include lower quality of life (Mason et al., 2019), poorer employment prospects (Scheeren et al., 2022) and greater risk of early death (Hirvikoski et al., 2016).

To date the most comprehensive evidence-based clinical guidance for managing adults with autism comes from the National Institute for Health and Clinical Excellence (NICE) in the UK. Other guidelines focus on children and/or diagnosis rather than management/treatment.

Recommendations from Clinical Guideline Autism spectrum disorder in adults: diagnosis and management (NICE, 2023).

Section 1.6 covers recommendations for interventions for coexisting mental disorders.

Section 1.6.1 notes that staff delivering interventions (such as therapists) should have an understanding of the core features of autism and their possible impact on the treatment of coexisting mental disorders, and should consider seeking advice from a specialist autism team regarding delivering and adapting these interventions for autistic people. (The core features of autism – difficulties with social interaction and social communication; restricted, repetitive patterns of behaviour, interests or activities and sensory issues – were covered in the previous article. Adaptations are included in this article.)

Section 1.6.2 recommends offering psychosocial interventions informed by existing NICE guidance for the specific disorder.

Section 1.6.3 details adaptations to the method of delivery of cognitive and behavioural interventions for autistic adults. These should include:

• placing greater emphasis on changing behaviour, rather than cognitions, and using the behaviour as the starting point for intervention
• making rules explicit and explaining their context
• using plain English and avoiding excessive use of metaphor, ambiguity and hypothetical situations
• involving a family member, partner, carer or professional (if the autistic person agrees) to support the implementation of an intervention
• maintaining the person’s attention by offering regular breaks and incorporating their special interests into therapy if possible (such as using computers to present information), and
• a more concrete and structured approach with a greater use of written and visual information (which may include worksheets, thought bubbles, images and ‘tool boxes’) (NICE, 2023).

Section 1.6.4 recommends that pharmacological interventions (medications) be offered (by authorised prescribers) according to existing NICE guidance for the specific coexisting mental disorder.

Autistic burnout and misdiagnosis of mental disorders

“Autistic Burnout is an integral part of the life of an Autistic person that affects us pretty much from the moment we’re born to the day we die, yet nobody, apart from Autistic people really seem to know about it…” – Kieran Rose, The Autistic Advocate (2018)

If an adult client with autism isn’t responding to interventions for a co-existing mental disorder, it is worth considering the possibility of a misdiagnosis. Adults with autism face daily stressors living in an unaccommodating neurotypical world where there is a “systemic and pervasive lack of autism awareness,” discrimination and stigma (Higgins et al., 2021; Mantzalas, Richdale, Adikari, et al., 2022). Demands and expectations accumulate over time and may eventually exceed their coping abilities, triggering “autistic burnout”. This debilitating condition is characterised by long-term mental, physical and emotional exhaustion, often begins during the transition to high school or adulthood, and recurs across the lifespan after transitions or stressful life events such as bullying, victimization, discrimination and unemployment (Mantzalas, Richdale, & Dissanayake, 2022).

Autistic burnout, while commonly described by people with autism on social media (#AutBurnout and #AutisticBurnout), has only recently begun to attract the attention of researchers. A thematic analysis of posts by autistic adults on two online platforms included descriptions of a general lack of knowledge about autism, especially among health care professionals, which led to misdiagnosis and inadequate or inappropriate treatment (Mantzalas, Richdale, Adikari, et al., 2022). Other research suggests autistic burnout is frequently misdiagnosed as depression, anxiety, bipolar disorder, borderline personality disorder and other conditions (Arnold et al., 2023; Higgins et al., 2021; Raymaker et al., 2020). Adults with autism report that it is possible to engage in their special interests during periods of burnout, which differentiates the phenomenon from depression (Higgins et al., 2021; Mantzalas, Richdale, Adikari, et al., 2022; Raymaker et al., 2020).

Given that autistic burnout is not a recognised condition in the DSM-5-TR or ICD-11, we need to turn our attention to the emerging clinical and academic literature for an understanding of its features. A 2021 study led by Australian researchers sought to create a definition for clinicians and the autistic and autism communities through a consensus process involving experts – autistic adults with lived experience of autistic burnout (Higgins et al., 2021). This led to the following definition and criteria that intentionally follow a DSM-5-TR style format:

Preliminary defined criteria for autistic burnout (reproduced from Higgins et al., 2021)

Autistic burnout is a severely debilitating condition with onset preceded by fatigue from camouflaging or masking autistic traits, interpersonal interactions, an overload of cognitive input (thinking and mental processing), a sensory environment unaccommodating to autistic sensitivities and/or other additional stressors or changes. Onset and episodes of autistic burnout may interact with co-occurring physical and / or mental health conditions. The following criteria must be met:

1. Significant mental and physical exhaustion.
2. Interpersonal withdrawal.

With one or more of the following;

1. Significant reduction in social, occupational, educational, academic, behavioural, or other important areas of functioning.
2. Confusion, difficulties with executive function (the mental capacity to focus attention, to process information while completing other tasks, and to plan and remember instructions), and/or dissociative states.
3. Increased intensity of autistic traits and/or reduced capacity to camouflage/mask e.g., increased sensory sensitivity, repetitive or stimming behaviour, difficulty engaging or communicating with others.

The condition is not better explained by a psychiatric illness such as depression, psychosis, personality disorder, trauma- and stressor-related disorders.

Differential diagnosis

• Depressive episode. Autistic burnout has similarity to depression, though onset is primarily related to social interaction demands / masking fatigue, and overload.
• Mainstream (non-autistic) burnout. Mainstream burnout onset and manifestation is typically related solely to employment. In autistic burnout, social interaction / camouflaging and / or unsupportive sensory environments are elements of onset. In contrast, cynicism, if evident, is related to non-autistic people rather than employment. The impact may extend to changes in autistic traits and, for some, regression.
• Autistic ‘meltdown’. Autistic burnout differs from meltdown experiences due to severity and duration of the exhaustion or fatigue. Whereas autistic meltdown can involve overpowering emotions, autistic burnout is more associated with perceived emotional numbness.

This Australian research acknowledged that although autistic burnout and depression may co-occur, accepted therapeutic approaches for depression may be contraindicated if autistic burnout is present (Higgins et al., 2021). For example, the experts who had lived experience of autistic burnout described social withdrawal and downtime as essential for their recovery. This is inconsistent with behavioural activation approaches. Furthermore, as they described cognitive overload being a key precursor of autistic burnout, cognitive-focused therapies such as cognitive behavioural therapy (CBT) may be counterproductive.

This raises the question of what constitutes appropriate psychological support in recovery from autistic burnout. While the evidence base is in its infancy, the following strategies have been identified in the academic literature, and therefore may be useful to offer to clients experiencing autistic burnout. The overarching themes are reducing demands and increasing resources:

• Withdrawing from social and / or interpersonal contact
• Withdrawing from externally-imposed demands e.g., taking time off work
• Managing energy by taking breaks throughout the day or time to decompress at the end of the day
• Reducing or pulling back from activities that contribute to a sense of overload
• Regulating their nervous system through ‘stimming’ e.g., fidgeting, rocking, humming, repeating phrases, rubbing fabrics, staring at objects, sniffing things
• Unmasking (doing things in an ‘autistic way’)
• Modifying the sensory environment where possible (e.g., by wearing sunglasses or headphones), taking ‘sensory breaks’, or avoiding aversive sensory environments (e.g., noisy shopping centres)
• Spending time on special interests
• Accessing social support from family, friends and others
• Connecting online to people with shared lived experiences (i.e., autistic communities) who are often a valuable source of acceptance, pride, advice and information
• Promoting self-awareness by learning about autism including triggers and early warning signs of autistic burnout
• Listening to their body
• Identifying support needs
• Asking for help
• Learning how to set boundaries
• Returning to daily routines, activities and responsibilities gradually
• Advocating for themselves by requesting reasonable accommodations at work
• Promoting self-awareness by identifying and using their autistic strengths
• Promoting self-acceptance (Higgins et al., 2021; Mantzalas, Richdale, Adikari, et al., 2022; Mantzalas, Richdale, & Dissanayake, 2022; Raymaker et al., 2020)

Avoidance coping for recovery

It’s important for helping professionals to understand that while avoidance coping is generally perceived to be maladaptive or only beneficial in the short-term, the preliminary autistic burnout research paints a very different picture for autistic individuals; social and sensory withdrawal is an adaptive coping mechanism as it allows autistic people the time they need to rest and recover (Mantzalas, Richdale, & Dissanayake, 2022). One of the participants in the thematic analysis study explained:

“I was told for years that avoiding things will only make everything worse. And while that is commonly true for my #anxiety it absolutely isn’t true for my #autism related problems. Exposure there makes it WORSE because it causes overload, then burnout. Avoidance HELPS this” (Mantzalas, Richdale, Adikari, et al., 2022)

Masking and unmasking are complex topics in relation to autistic burnout, with some autistic adults describing a “no win” situation (Mantzalas, Richdale, Adikari, et al., 2022). Masking facilitates job opportunities and social inclusion, but is exhausting and ultimately leads to burnout. Masking can also generate identity confusion and contribute to support needs being unrecognised or disbelieved (Mantzalas, Richdale, Adikari, et al., 2022). Though unmasking can facilitate self-acceptance and reduce cognitive load, it increases the likelihood of ostracism and bullying which contribute to burnout. For each client it may be necessary to find a balance between living authentically, exhaustion and discrimination by masking where necessary to achieve goals, avoid stigma and attain resources, and dropping the mask with trusted friends and family to reduce the chance of autistic burnout (Mantzalas, Richdale, Adikari, et al., 2022).

Finally, although autistic burnout is common, it is not experienced by all autistic people and should not be considered an inherent aspect of ASD (Mantzalas, Richdale, & Dissanayake, 2022). Key drivers of autistic burnout are not being accepted and masking to avoid stigma and discrimination (Mantzalas, Richdale, Adikari, et al., 2022). Therefore, therapy should consider person-environment fit such as whether a work environment can be modified to make it more autism-friendly, or when an autistic client might need to consider leaving an inhospitable environment by changing workplaces or careers (Henninger & Taylor, 2013; Lai et al., 2020; Pfeiffer et al., 2018).

Implications of the “double empathy problem” for the therapeutic alliance

The diagnostic criteria (DSM-5-TR and ICD-11) for ASD include:

• Reduced sharing of interests, emotions or affect (American Psychiatric Association, 2022), and
• Limitations in the ability to imagine and respond to the feelings, emotional states, and attitudes of others (ICD-11, 2023).

These criteria reflect early research suggesting people with autism lack empathy as they have difficulty understanding the thoughts, feelings and experiences of others – referred to in the academic literature as an impaired “theory of mind,” “mind-blindness” or difficulty “mentalising” (Baron-Cohen, 1990; Baron-Cohen & Wheelwright, 2004).

However, a growing contingent of researchers are expanding theory of mind research in a new direction by proposing that difficulties with mind-reading might not reside solely with people with autism (Voyles Askham, 2022). Damian Milton, an autism researcher and chair of the Participatory Autism Research Collective, who is himself autistic, coined the phrase the “double empathy problem” to describe what happens when autistic and non-autistic people struggle to understand and empathise with each other (Milton, 2012):

“In a sense it is a ‘double problem’ because both people experience it, and so it is not a singular problem located in any one person. Rather, it is based in the social interaction between two differently disposed social actors, the disjuncture being more severe for the non-autistic disposition as it is experienced as unusual, while for the ‘autistic person’ it is a common experience.”

Milton’s reframing of social interaction difficulties as relational rather than an individual impairment has now been demonstrated empirically (Morrison et al., 2020). Recent research has shown that non-autistic people are impaired when it comes to interpreting the behaviour of autistic people (Gernsbacher & Yergeau, 2019; Heasman & Gillespie, 2018b; Sasson et al., 2017; Sheppard et al., 2016). Typically developing (neurotypical) adults also often form negative first impressions of autistic adults and report less of a desire to interact with them (DeBrabander et al., 2019). All of these factors may contribute to the social disability of autistic individuals, consistent with the neurodiversity perspective that environments can be disabling (for more on neurodiversity as a human rights movement, refer to the first article in this series: Neurodiversity, Neurodivergence and Being Neurotypical).

Further support for the double empathy theory comes from studies exploring social interactions between neurodivergent people. These show autistic people:

• Also form negative first impressions of other autistic people, but express greater inclusivity and less discriminatory attitudes about these differences i.e., these judgments do not reduce their social motivation towards interacting with other autistic individuals
• Share more information with other autistic people than with non-autistic people
• Find spending time with other autistic people easier and more comfortable than spending time with neurotypical people, and
• Feel more understood by other autistic people and that they can be themselves (Crompton, Hallett, et al., 2020; Crompton, Ropar, et al., 2020; DeBrabander et al., 2019).

Research points to people with autism being less likely to rely on typical social expectations for interaction, and being less upset if these expectations are not followed, as the basis for the greater social ease with other autistic people (Heasman & Gillespie, 2018a). Features of neurodivergent-to-neurodivergent communication styles include:

• Low coordination (reciprocation) such as ignored turns, parallel dialogue (independent conversation threads over several turns), and misreading the pragmatic or emotional content of the prior turn
• A “generous assumption of common ground” (such as shared knowledge of movie quotes, TV characters, etc.) which, when understood by other people, leads to rapid rapport but, when misunderstood, leads to potentially disruptive turns, and
• A low demand for coordination that ameliorates many challenges associated with disruptive turns (Heasman & Gillespie, 2018a).

Drawing on all of these insights, an Australian team recently posed the question: “How can psychologists meet the needs of autistic clients?” in a letter to the editor of the journal Autism (Jellett & Flower, 2023). The following excerpt outlines the central challenge for psychologists (and other therapists):

“We think it is essential for psychologists to start changing the way they work to improve the person-environment fit for autistic clients. The relationship between a psychologist and their client influences the gains a client makes from engaging in therapy. The way psychologists are trained to build an effective working relationship with clients is based on neurotypical communication styles. The double empathy problem tells us that autistic clients relate to others differently to non-autistic clients… We propose that psychologists (if they are, for example, non-autistic and working with an autistic client), are at risk of misinterpreting their clients’ communication and needs…The development of a therapeutic alliance between a psychologist and client of different neurotypes might require an alternative approach to standard practice.”

Because autism is a pervasive, developmental condition, it impacts ways of thinking, socialising and the development of customs creating a culture in its own right – Autistic Culture. While this phenomenon “is often discussed within the Autistic community,” says Erin Bulluss, an Autistic clinical psychologist, “it rarely makes it into academic or clinical discussion” (Bulluss, 2021). She thus argues for the importance of cultural competency and cultural humility as a starting point for psychotherapy with Autistic clients (Bulluss, 2021). Cultural competency involves learning about cultures we are not part of:

“There are a range of easily accessible resources to learn about Autistic Culture, including resources created by Autistic people that explore their lived experience, and resources created by Autistic psychotherapists to explore the junction between lived and professional experience. Social media has allowed a range of Autistic voices to have a platform. Psychotherapists simply need to seek them out and listen with an open mind” (Bulluss, 2021).

As it is not possible to be completely competent working with a culture we are not part of, Bulluss points out cultural humility is also a key aspect of providing autism-affirming psychotherapy:

“Cultural humility is a lifelong commitment to self-reflection and self-critique (Tervalon & Murray-García, 1998), while seeking to learn from Autistic people rather than taking an expert stance. Cultural humility includes acknowledging and addressing any underlying assumptions that are held as a result of being part of the dominant non-autistic culture, and frequently asking oneself during psychotherapeutic sessions, “what assumptions am I making?” rather than letting privilege render the assumptions invisible. When it comes to working with Autistic clients, assumptions can be very well camouflaged as they are tied tightly to socio-cultural norms and the core assumptions our society holds about how to connect, how to read emotion on someone’s face, and what body language means. A fundamental part of understanding Autistic Culture is understanding that the very way we process the world differs at a neurological level and this difference in processing is not changeable, curable, or wrong. Seeking to understand each individual client’s way of experiencing themselves, others, and the world, including regularly checking in about the internal experiences the client is having rather than assuming based on their body language and facial expressions, is essential to providing psychotherapy to Autistic clients” (Bulluss, 2021).

Key takeaways

• The “lost generation” refers to adults with autism who were not diagnosed as children. They may or may not have a formal diagnosis.
• Common presenting problems for the lost generation are mental health challenges. More than half of autistic adults have a co-occurring mental health disorder with ADHD, anxiety and depressive disorders being the most common.
• NICE Clinical Guidelines provide evidence-based recommendations for the management of co-existing mental disorders in autistic adults.
• The daily stressors, demands and expectations that autistic people face can accumulate and trigger physical and mental exhaustion known as autistic burnout.
• Autistic burnout is frequently misdiagnosed as a mental health disorder.
• Recovery from autistic burnout involves reducing demands and increasing resources. Short-term social and sensory withdrawal is an adaptive coping strategy. A longer-term issue to consider during therapy is person-environment fit.
• The “double empathy problem” refers to a reframing of the social deficits of autistic people as a reciprocal difficulty that individuals of different neurotypes have understanding and empathising with each other.
• Autistic culture is a phenomenon that emerges from the pervasive developmental nature of autism.
• Non-autistic therapists can address the double empathy problem and how they approach forming a therapeutic alliance with clients of different neurotypes by learning about autistic culture and continually reflecting on assumptions they may be making.

References

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