Changing approaches to interventions for autistic adults

The last decade has witnessed many changes in our knowledge of and approaches to autism. While this was initially considered a severe childhood disorder, typically associated with significant intellectual and language impairments, recent research suggests that the majority of autistic individuals (~60%) are of average or higher IQ (≥86), and less than a third have severe cognitive (IQ <50) and communication impairments ¹ . Autism is also now recognized as a lifelong condition, although the impact on functioning and the need for intervention varies extensively over time, both across and within individuals.

Probably the greatest change relevant to intervention results from calls by autistic adults, from many different personal and professional backgrounds, for a “de‐pathologizing” of the condition. They argue that autism should not be considered as a deficit or dis‐ order, but as an aspect of neurodiversity within human society. There is growing resistance to interventions designed to “manage” autism and a focus, instead, on the environmental factors (individual, social, physical) that affect well‐being and quality of life ² . Consequently, current approaches to research and intervention increasingly involve collaborations between the autistic and non‐autistic community to facilitate mutual understanding and promote outcomes that are relevant and meaningful to autistic people ³ .

A further significant shift is the recognition that, in adulthood, it is generally not autistic features that prove the main barrier to social inclusion, but poor mental health. Mental health problems – especially anxiety, depression and attention‐deficit/hyperactivity disorder – are significantly raised in autism ⁴ . There is also a heightened risk of suicide. Chronic physical ill‐health, too, is significantly more frequent than in the general population, and poor physical and mental health are both associated with an increased risk of premature mortality. Among the many factors affecting mental well‐being are failure to find or maintain appropriate employment, and limited access to social and leisure activities or independent accommodation, all leading, in turn, to economic disadvantage, over‐dependence on families, stigmatization, victimization, social isolation and low self‐esteem.

Among the various psychological interventions for mental health problems in autism, cognitive‐behavioral and mindfulness‐based techniques appear to be at least moderately effective for reducing anxiety, obsessive‐compulsive behaviors, depressive symptoms and social anxiety ⁵ . The evidence on treatments for severe depression is weaker and few trials have included clinically ill patients. Overall, the quality of many trials is limited, and participant groups are often small and homogeneous (mostly male, relatively young and without intellectual disability). Furthermore, despite calls for autism‐specific adaptations of standard techniques to improve treatment effectiveness, currently there are no empirically derived guidelines on how this should be done.

Other trials of psychological interventions have concentrated on social‐communication skills, with improvements reported in social cognition, emotional understanding and engagement with peers ⁶ . However, while some studies report moderate to large effects, others find no significant improvements; few describe the impact on real‐life social interactions, and very few include older autistic adults or those with more severe cognitive disabilities. Critics of “social skills training” also highlight lack of attention to the dynamic nature of social interactions – which involve not only the autistic person, but others’ perceptions, judgments, reactions and responses.

Alternative approaches in adults have aimed to address problems that affect well‐being and quality of life ⁷ . These include programmes for young autistic adults that foster academic, vocational or work‐related skills to aid the transition into employment. Interventions designed to improve daily life skills and/or increase access to leisure programmes suggest that these may reduce stress and improve cognitive and social skills as well as mental health. Specialist supported employment schemes can increase access to work and job retention, resulting in higher job levels, better pay and improved quality of life. These typically focus on ways of minimizing stress caused by excessive social or environmental demands, and educating employers on how to achieve an “autism friendly” workplace ⁷ .

Unfortunately, even in higher income countries, access to such specialist programmes is very limited, and there are few community services available once the intervention scheme ends. Some autistic participants also suggest that these programmes are not always well adapted to meet individual goals. To date, the lack of adequately powered randomized controlled trials, and the wide mix of participants and treatment methods, mean that it is still not possible to identify which specific approaches work best for which individuals, or which are the essential elements of effective programmes.

Collaborations between autistic and non‐autistic researchers have also begun to identify many more factors that have a negative impact on well‐being. These include the multiple social and environmental barriers experienced by autistic individuals in accessing health services. Sensory sensitivities (e.g., to sounds, textures, smells, food) can also severely limit daily activities, while personal accounts highlight the risk of “autistic burnout” due to the continual stress of attempting to camouflage autistic traits in order to adapt to a “neurotypical” world.

Such difficulties may be better helped by environmental modifications and interventions to improve wider social attitudes, rather than attempting to change autistic individuals themselves. There is a pressing need, too, to recognize, and make accommodations for, the particular assessment, intervention and support needs of autistic women, including their somewhat atypical manifestation of autism traits, and their requirements for better adapted services around pregnancy, parenthood and menopause.

The focus here has been so far on autistic adults who can voice their own concerns and make recommendations for change. However, it is crucial to remember the almost 30% of individuals whose autism is compounded by severe intellectual and communication disabilities; behavioral difficulties, including self‐injury; and life‐threatening physical problems such as epilepsy. These individuals are also at greater risk of victimization, abuse and social and economic disadvantage. There has been growing concern that their needs, and those of their carers, could become marginalized in disputes about pathological versus ecological models of autism and whether autism should be viewed as a “difference” rather than a disability.

To address such concerns, the term “profound autism” was proposed to distinguish individuals with high dependency needs from the more verbally and intellectually able autism population ⁸ . While this term has generated considerable criticism, especially within the neurodiversity movement, it underscores the fact that, for some adults, autism can have a profound negative impact on quality of life. Moreover, because these individuals are rarely involved in research, knowledge about effective interventions is limited, and risks of maltreatment (including excessive use of medication and restraint) are high.

Research is needed to develop economically viable support programmes that can be adapted to individual and cultural circumstances and rolled out within high‐, middle‐ and lower‐income countries. Among the most immediate needs are access to ongoing opportunities to develop social, communication and daily‐life skills; provision of appropriate occupational, leisure and residential facilities; and practical, social, economic and emotional support for carers.

A current guideline, by autistic writers and researchers, specifies other elements of quality care relevant to adults of all ability levels ⁹ . These include a focus on promoting autonomy, facilitating communication, tackling environmental and other stressors, removing barriers to access, fighting stigma and discrimination, recognizing distress, providing person‐centred care, and ensuring ongoing and autism‐specific staff training.

Since all outcomes arise from a “dynamic interaction between the individual and his or her environment that plays out over time” ² , provision of care appropriate for individual needs should be available to all autistic people throughout the lifespan.