Diagnosing autism in adult forensic settings

Autism Spectrum Disorder (ASD), hereafter referred to as autism (the preferred term among the autistic community ¹ ), is currently understood as a lifelong neurodevelopmental condition characterised by individuals displaying significant differences with social communication, social interaction and within different dimensions of imagination, including often having preoccupations, and a need for predictability and routines. ² Sensory processing issues, as well as emotional regulation issues may also be present. ³ Of particular significance is the specific cognitive style associated with autism, including a tendency towards a literal interpretation of information, problems with central cohesion (tendency to focus on specific details rather than appreciate the bigger picture), as well as difficulties with different dimensions of social cognition. ⁴ However, there is significant diversity among autistic individuals, with the observation that ‘no two individuals with autism are the same: its precise form or expression is different in every case’. ⁵

Whilst the causation of autism remains unknown, it is likely to involve a complex genetic environmental interaction resulting in atypical brain development. ⁶ Co-occurring neurodevelopmental disorders such as attention deficit hyperactivity disorder are also common as well as mood and anxiety disorders. ⁷ For many individuals, anxiety disorders may manifest as obsessive compulsive disorder and for some, more severe psychiatric disorders such as a psychosis may be present, as might be neurological conditions such as epilepsy. ⁸ With respect to general prevalence within the population, a conservative and likely underestimate suggests that around one in a hundred individuals may have autism. ⁹ Autism is also likely to be significantly undiagnosed in girls and women, where social masking of difficulties may be particularly significant. ¹⁰ With respect to the age when it becomes reliable to make an accurate diagnosis, this becomes more robust when social demands become more apparent. ¹¹ However, given the diversity of presentations among individuals, delays in accessing services and presence of co-occurring difficulties, it is not uncommon for many individuals to receive an autism diagnosis during adulthood. ¹² Whilst there is no evidence to suggest that autistic individuals as a group are any more likely to offend than non-autistic individuals, practitioners might hold in mind that for some individuals, the importance of seeking a diagnosis often arises when they come into contact with the Criminal Justice System. ¹³ Although methodologies vary between studies, the general consensus is that autistic individuals are over-represented within prisons and secure hospitals. ¹⁴ However, obtaining a reliable diagnosis can be difficult with many forensic cases and for a range of reasons. Indeed, it is not uncommon for such cases to be associated with assessments based on very limited information and gaps in evidence, resulting in differences of professional opinion regarding the diagnosis. This can lead to confusion for the courts ¹⁵ and uncertainty with subsequent care pathways – i.e., whether custodial or mental health services are best placed to manage the individual, and whether a care treatment review (CTR) process and / or specialist autism service are required.

Current diagnostic criteria are outlined in the Diagnostic and Statistical Manual of Mental Disorders fifth edition (DSM-5) ¹⁶ and the International Classification of Disorders (ICD-11) ¹⁷ (see table 1). However, both the DSM-5 and ICD-11, like other conditions do not specify using any formal procedure or diagnostic assessment tools to aid a diagnosis. Whilst the recommendations and guidance for using formal diagnostic tools might be better placed elsewhere, this results in many diagnostic decisions being based upon professional, but subjective clinical judgements and perhaps reliant upon self-report screening aids. Within the UK, the National Institute for Health and Care Excellence (NICE) guidelines ¹⁸ make a series of recommendations regarding the assessment of autism in adults. Among the recommendations made are that ‘staff who have responsibility for the assessment of autistic adults should adapt these procedures, if necessary, to ensure their effective delivery, including modification to the setting in which the assessment is delivered, and the duration and pacing of the assessment’. The NICE recommendations also suggest that any assessment should be undertaken by professionals who are trained and competent to do so, that assessments should ideally be based on a range of professionals and skills, as well as where possible involve a family member or other informant that knew the person when they were a child or use documentary evidence of current and past behaviour / development (e.g., home videos from when the person was a young child). With ‘complex’ assessments, it is also recommended that consideration be given to using formal assessment tools (such as the Autism Diagnostic Observation Schedule 2 ¹⁹ or the Autism Diagnostic Interview Revised ²⁰ ), as well as self-report screening tools such as the Autism Spectrum Quotient ²¹ or Ritvo Autism Asperger Diagnostic Scale Revised. ²² However, although the NICE guidelines suggest that diagnostic assessments should be adapted to the setting, they do not highlight what specific issues may complicate an assessment or what adaptations may be required.

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Table 1.

DSM V and ICD 11 criteria for autism Spectrum disorder.

DSM V
Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following: Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affects and response to a total lack of initiation of social interaction Deficits in nonverbal communicative behaviours used for social interaction; ranging from poorly integrated verbal and nonverbal communication, through abnormalities in eye contact and body language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behaviour to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people Restricted, repetitive patterns of behaviour, interests, or activities as manifested by at least two of the following: Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypes, echolalia, repetitive use of objects, or idiosyncratic phrases) Excessive adherence to routines, ritualised patterns of verbal or nonverbal behaviour, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes) Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests) Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects) Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities) Symptoms together limit and impair everyday functioning
ICD 11
Essential (required) features:
Persistent deficits in initiating and sustaining social communication and reciprocal social interactions that are outside the expected range of typical functioning given the individual's age and level of intellectual development. Specific manifestations of these deficits vary according to chronological age, verbal and intellectual ability, and disorder severity. Manifestations may include limitations in the following: Understanding of, interest in, or inappropriate responses to the verbal or non-verbal social communications of others. Integration of spoken language with typical complimentary non-verbal cues, such as eye contact, gestures, facial expressions and body language. These non-verbal behaviours may also be reduced in frequency or intensity. Understanding and use of language in social contexts and ability to initiate and sustain reciprocal social conversations. Social awareness, leading to behaviour that is not appropriately modulated according to the social context. Ability to imagine and respond to the feelings, emotional states, and attitudes of others. Mutual sharing of interests. Ability to make and sustain typical peer relationships. Persistent restricted, repetitive, and inflexible patterns of behaviour, interests, or activities that are clearly atypical or excessive for the individual's age and sociocultural context. These may include: Lack of adaptability to new experiences and circumstances, with associated distress, that can be evoked by trivial changes to a familiar environment or in response to unanticipated events. Inflexible adherence to particular routines; for example, these may be geographic such as following familiar routes, or may require precise timing such as mealtimes or transport. Excessive adherence to rules (e.g., when playing games). Excessive and persistent ritualised patterns of behaviour (e.g., preoccupation with lining up or sorting objects in a particular way) that serve no apparent external purpose. Repetitive and stereotyped motor movements, such as whole body movements (e.g., rocking), atypical gait (e.g., walking on tiptoes), unusual hand or finger movements and posturing. These behaviours are particularly common during early childhood. Persistent preoccupation with one or more special interests, parts of objects, or specific types of stimuli (including media) or an unusually strong attachment to particular objects (excluding typical comforters). Lifelong excessive and persistent hypersensitivity or hyposensitivity to sensory stimuli or unusual interest in a sensory stimulus, which may include actual or anticipated sounds, light, textures (especially clothing and food), odours and tastes, heat, cold, or pain. The onset of the disorder occurs during the developmental period, typically in early childhood, but characteristic symptoms may not become fully manifest until later, when social demands exceed limited capacities. The symptoms result in significant impairment in personal, family, social, educational, occupational or other important areas of functioning. Some individuals with Autism Spectrum Disorder are able to function adequately in many contexts through exceptional effort, such that their deficits may not be apparent to others. A diagnosis of Autism Spectrum Disorder is still appropriate in such cases

Whilst many adult autism assessments can be complicated, assessing autism in forensic settings such as prisons or secure hospitals, or as part of medico-legal instructions, can present additional issues and challenges. ²³ Here, however, NICE guidelines offer limited assistance and often cannot be followed because of the limited time scale and circumstances of a case or clinician factors. Typically, forensic and legal cases present with a range of individual issues including but not limited to:

Co-morbid neurodevelopmental conditions and diagnostic overshadowing due to co-occurring psychiatric difficulties and or trauma histories ²⁴ ;

Although the NICE guidelines offer some basic guidance, the specific complications associated with diagnosing autism among many adult forensic cases, in combination with the differences in method as to how an autism diagnosis has been concluded, can result in differences in opinions as to the presence of autism. Depending on the relative demands and constraints of each setting (custodial or secure hospital) and context (for example, where limited time and restrictive features of the setting mean only partial assessments are completed pre-trial), differences of opinion may occur (as it might with other conditions) and which in turn may result in a lack of appropriate reasonable adjustments being made and potentially the development of additional presenting difficulties, uncertainty with whether medications are appropriate, as well as uncertainty as to appropriate future care pathways. The need for clarity as to how autism is diagnosed within forensic settings and cases, the need to include evidence from a broad range of sources such as neuropsychology ²⁹ and highlighting the limitations of an assessment maybe particularly pertinent following the recent call for a review into the rising demand for mental health and autism services. ³⁰ However, completing such comprehensive assessments with forensic cases can present many challenges. This editorial outlines some limitations with the current guidelines regarding the assessment of autism with adult forensic cases, highlighting some specific issues that require consideration and the call for further research into how forensic autism assessments can be improved. Whilst no single diagnostic protocol will cover all forensic scenarios – perhaps highlighting the need for different ‘grades’ of assessment, all assessments need to clearly state what evidence has been used to support an opinion, communicate where there is uncertainty or other possible explanations for behaviours and notably where there are gaps in an assessment.