Rethinking autism
BACP Children, Young People and Families, September 2020

The introduction of autism spectrum disorder (ASD) diagnostic services in the UK has led to the highest ever recognised prevalence of ASD nationally.¹ Recent research has highlighted the co-occurrence of ASD with mental health conditions,² spurring the National Health Service (NHS) into action. The NHS Long Term Plan is committed to ‘…improve its understanding of the needs of people with learning disabilties and autism, and work together to improve their health and wellbeing’.³ These changes include the allocation of keyworkers to those deemed most complex, and developing integrated care systems (ICS) to better support young people and their families. Although these changes are a step towards improved understanding, there is a significant financial cost attached, which adds increased strain to an already struggling NHS.

In this article, I discuss the current understanding of autism in relation to its historic roots in behaviour theory, as an influencer for NHS treatment. Based on 10 years’ experience of working with young people with ASD in varying capacities, I will also ask whether ‘treating’ autism suggests the young person can be ‘fixed’ and how this relates to new research around comorbid mental health concerns. Finally, I will call for research into non-directive talking therapies as an alternative to treating ASD with behavioural techniques; questioning whether current practice is sufficient or ethical.

Defining ASD

ASD is defined in DSM-V as, ‘…persistent difficulties with social communication and social interaction’ and ‘…restricted and repetitive patterns of behaviours, activities or interests’ (including sensory behaviour), present since early childhood, to the extent that these limit and impair everyday functioning’.⁴ Persistent difficulties with social communication and interactions include: difficulty in social-emotional reciprocation, such as back and forth conversation, deficits in nonverbal communication, such as maintaining eye contact, and problems in developing, maintaining and understanding relationships. The restricted/repetitive aspect includes a whole range of characteristics, such as flapping or stimming for sensory input/regulation, insistence on routine and structure, fixated interests and hyper/hyporeactivity to sensory input. 

The impact that ASD has on childhood development should not be understated and needs further acknowledgement. Focusing on adolescents specifically, research has found that neurotypical adolescents spend one-third of their time with their peers.⁵ These relationships were characterised by a high level of intimacy and self-disclosure which helps the teen develop an understanding of themselves and relationships. Other research found that adolescents with ASD spend the majority of their free time alone or with adults or paid carers.⁶ I have witnessed the significant impact of this and believe it exacerbates social communication problems further. It is hypothesised that social communication difficulties increase the child’s vulnerability to stressful situations and subsequent anxiety.⁷

History of treatment

It is important to acknowledge how and why ASD is viewed and treated with behavioural techniques. The history of ASD is laden with social stigma and maladaptive practice. Kanner was the first to describe ‘infantile autism’, based on a group of 11 children, between 2 and 10 years of age, who were presenting with limited communication and an insistence on sameness.⁸ In the 1970s, autism was likened to schizophrenia, and both conditions were treated similarly, with medication to manage behaviours. The 1980s saw the DSM-III identifying autism as a distinct entity, and research focused on ways to change autistic behaviour with the use of operant conditioning. This led to the publication of a controversial study which made use of punishment and reinforcement.⁹ The results suggested behavioural techniques could help ASD children to change their autistic behaviours, but these have been criticised as unethical. The focus on behavioural research is still influencing our view of ASD today as ‘…behavioural approaches remain the most well-researched intervention for individuals with autism spectrum disorders’.² The understanding of autism on a spectrum did not appear until 1994, with the publication of the DSM-IV . Autism was categorised into different types, with a belief that it is ‘…rooted in genetics’.¹⁰ Influenced by the findings (or lack of) from the Human Genome Project, completed in 2003, DSM-V proposed ‘autism spectrum disorder’. Instead of defining categories, the spectrum ranges from mild to severe and has two distinct features (aforementioned). Based on the change in definition and diagnosis, I see a need for a change in the NHS response to individuals on the spectrum.

Research findings

The change required from the NHS is likely to be influenced by research. Substantial amounts of research have been conducted into directive techniques. One large-scale research project conducted a systematic review of 27 different intervention practices from 456 studies.¹¹ The inclusion criteria stated the interventions needed to be educational, developmental or behavioural. The limitation of this review is that it focused on discrete outcomes and ignored the child’s wellbeing generally. As a result, the identities of young people are being ignored and ASD is likely to remain viewed as a medical problem. The validity of the findings may have been improved if the researchers had included studies looking at non-directive interventions, such as person-centred therapy. However, these types of study are typically smaller scale and fewer in nature, which may explain the lack of inclusion in previous systematic reviews. The research challenge continues, with studies highlighting numerous benefits to behavioural techniques, such as cognitive behavioural therapy (CBT), more generally. Primarily, CBT is cost-effective, can be done in groups and is relatively short term (12–16 weeks). Additionally, there is a large body of evidence demonstrating the effectiveness of CBT in changing behaviour. Although these strengths cannot be ignored, the lack of research into other therapies is concerning. Similar efficacy has been shown for counselling and CBT,¹² highlighting the benefits of both options. There is concern that ‘…the focus of intervention with ASD is to promote independent living skills and reduce challenging behaviour’,² rather than support the individual holistically with problems they identify. 

The increase in comorbidity of ASD and mental health problems lends further support to research, including talking therapies. A number of studies demonstrate that those with an ASD diagnosis may also present with anxiety, depression and OCD.² Large-scale research into the effectiveness and benefits of talking therapy may contribute to a change in societal views of ASD and subsequently improve the quality of life for young people.

By continuing to predominantly offer behavioural interventions, we may be encouraging the ignorance of comorbidity and subsequently the complexity of ASD. This may not only heighten symptoms, specifically anxiety, but worsen the problem of limited research and poor understanding in how to work therapeutically with this client group. In doing so, psychotherapists and counsellors are unknowingly promoting an ableist society, defined as, ‘…a network of beliefs, processes and practices that casts disability as a diminished state of being human’.¹³ I believe that offering CBT as the main intervention, misplaces the problem on the individual. Instead, society’s behavioural norms and the subsequent marginalisation due to lack of conformity should be held responsible. I question whether behavioural interventions are wholly concurrent with BACP’s Ethical Framework, which suggests we should show respect to our clients and offer fair and adequate provision of services.¹⁴ Are practitioners respecting clients if they are trying to change their behaviour to be more acceptable in society? Are children and young people with ASD receiving a fair and adequate provision of services if they are routinely offered CBT as the only treatment option?

Research suggests ‘principles’ that address these ethical concerns.¹³ Hodge seeks to identify support for counsellors and therapists in appreciating what being in the world might mean for a client who is on the autism spectrum. Hodge further suggests that in trying to change behaviour, professionals are indirectly trying to restore a ‘normal self’ which may not be achievable due to the genetic component of ASD.

Shifting views

The history of ASD and the change in diagnosis and definition, coupled with emerging (albeit limited and small-scale) research into the efficacy of talking therapy, calls for increased awareness and a new way of helping children and young people with ASD. This new perception could mark a shift in societal views, from individuals with ASD needing to be ‘treated’ with behavioural interventions, to a focus on supporting and understanding the difficulties faced by individuals. This holistic way of working could be provided by non-directive talking therapy. It is evident from history that research findings influence societal views. Studies investigating the benefits of nondirective approaches may contribute to a change in perceptions and alter the world for children and young people with ASD. I believe practitioners and researchers within the psychotherapy and counselling field have an unmissable opportunity to be at the forefront of this shift.