Enhancing mental health care for autistic individuals

Autistic children, young people and adults often face a challenging journey when seeking mental health support. They experience a high rate of cooccurring mental health difficulties (Mandy et al., 2022; Simonoff et al., 2008) which can significantly affect their health outcomes and quality of life (Knuppel et ak., 2018; Lai et al., 2019; Lawson et al., 2020). Despite these challenges, autistic individuals are less likely to receive the effective care they need. (Mandy, 2022). Autistic adults report dissatisfaction with care (Vogan et al., 2017), high levels of unmet needs (Nicolaidis et al., 2013), and harmful effects (Brede et al., 2022), while there is evidence that standard of care of autistic children and young people fails to meet their preferences and needs (Dickson et al., 2021; Lickel et al., 2012; National Institute for Health and Care Excellence, 2021). This suggests mental health services can be improved and tailored to support autistic individuals with mental health difficulties.

Barriers to effective mental health support for autistic people include a lack of tailored care. Autistic people report that care is rarely adapted to their needs (Adams & Young, 2020), which may be due to lack of training or lack of evidence on the best approaches (Ainsworth et al., 2020; Babb et al., 2021,2022; Spain et al., 2017). Another barrier is that clinicians struggle to differentiate between symptoms of mental health and traits of autism (Lai & Baron-Cohen, 2015; Rastam, 2008; Ryden & Hetta, 2008; Stewart et al., 2006), which can lead to misdiagnosis and difficulties for autistic people in receiving effective treatment (Adams & Young, 2021; Brede et al., 2022; Hus & Segal, 2021; Maddox et al., 2020).

Research is needed to explore what strategies are used to tailor treatments to meet the needs of autistic adults, children and young people in mental health settings. Thus, two systematic reviews have been carried out by Pemovska, Loizou and colleagues, looking at autistic adults (Loizou et al, 2024) and autistic children and young people (CYP) (Pemovska et al, 2024) respectively. The reviews aimed to explore what strategies have been used to improve mental health care for autistic people, the acceptability and feasibility of these strategies and their effectiveness in each of these groups. This work is vital to inform intervention and service level adaptations that can be made to improve mental health care for autistic people.

Methods

The two reviews were developed through close consultation with a working group made up of academics, clinicians, policy experts and researchers with lived experience. They are registered in Prospero and follow PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) guidelines.

Eligible studies included i) all study designs and service evaluations ii) CYP or adults or mixed with a  diagnosis of autism or identified by clinicians as potentially autistic, iii) any strategies/adaptations to improve mental health care for autistic CYP or adults iv) measure quantitively or qualitatively feasibility, service use, acceptability, experience/satisfaction and/or quantitively mental health, detection of autism, service user and social outcomes at end of treatment or follow up. Detailed searches were carried out on three electronic databases (Medline, PsycINFO, CINHAL) and two pre-print servers (medRxiv and PsyArXiv).

The quality of the studies was assessed using Mixed Methods Appraisal Tool (MMAT) (Hong et al., 2018) and the Grading of Recommendations Assessment, Development and Evaluation (GRADE) system (Guyatt et al., 2008) was used to assess the strength of the evidence contributing to effectiveness outcomes.

As well as assessing quality of the studies, the reviews also piloted a novel Autism Inclusive Research Assessment (AIRA) to measure the extent of autism inclusive practices in the studies reviewed. This was developed by one of the lived experience researchers in the group and includes criteria such as the inclusion of lived experience researchers in the study design and if adjustments were made to data collection tools/processes for qualitative/quantitative components of the studies.

Results

57 papers were eligible for inclusion for CYP and 30 papers were eligible for adults. They were a mix of RCTs (randomised controlled trials), non-randomised trials, qualitative studies, cross-sectional studies, surveys, service evaluations, mixed methods and before-after comparison studies.

Most studies investigated CBT interventions for anxiety, while others investigated service-level strategies. A few described bespoke mental health interventions for CYP and adults, which mostly utilised CBT techniques for anxiety, but also for stress and depression.

Authors conducted a narrative synthesis of results. They found that most studies used several interventions and service level adaptations to improve mental health treatment of people with autism. The most commonly reported adaptations were to communication and interventions, while the least commonly reported adaptations were to the environment. Most studies looked at more than one adaptation so there was a lot of overlap. The reviews identified 6 high-level categories for adults, children and young people, and an additional category specifically for CYP.

1. Communication accommodations

• They found that the majority of studies for adults (N=17) and CYP (N=20) made adjustments to communication.
• Communication accommodations included the use of clear, simple language preferred by autistic people and simple written materials and visual aids.
• For children and young people, 2 studies used the inclusion of technology as an adaptation to communication in mental health care.

2. Environmental adjustments

• Fewer studies reported environmental adjustments (Adult N=9, CYP N=6) such as minimizing sensory distractions, by conducting assessments in a low stimulus area (making adjustments to noise, decor, odor and lighting) and encouraging stimming with the provision of fidget toys and movement breaks.

3. Increase knowledge and detection of autism

• A few studies (Adult N=8, CYP n=10) identified service level strategies to increase knowledge and detection of autism, through the introduction of screening tools and training for clinicians in skills such as administrating autism measures, tailoring treatment to individual needs and increasing knowledge of autism.

4. Accommodate individual differences

• A top-level service and intervention adaptation identified (Adults N=18, CYP N=16) was accommodating individual difference by evaluating individual preferences/sensitivities/likes/dislikes/habits, encouraging individual hobbies and interests and tailoring care to individual differences.

5. Intervention content

• The majority of studies included in the review (Adult N=25, CYP N=23) involved adaptations to intervention content.
• This involved simplifying the context, slowing down the pace and considering the role of autism.
• Specific intervention accommodations were also made to integrate cognitive behavioural approach, social skills training and emotion-focused strategies.
• Specifically for children, studies included the use of creative outlets, activities, role play and a rewards system.

6. Intervention structure

• As well as content, studies included adaptations to the structure and procedure of interventions (Adult N=12, CYP N=15), such as changing the duration or number of sessions and involving additional therapists if necessary.

7. Involving wider support network (for children and young people)

• One adaptation identified in the CYP review (n=18), and not the adult review, was involving a wider support network, such as involving children’s parents and school to help transfer skills learnt in therapy to school/home settings.
• However, evidence for CYP views on approach this was lacking.

Overall, most mental health interventions and strategies to improve treatment were evaluated as feasible and acceptable. However, authors noted a lack of detailed description of many of the adaptations made or rational for using them. Furthermore, evidence of effectiveness of most of the interventions was low for adults and while slightly higher for CYP, it still ranged from low to moderate according to the GRADE.

As well as a narrative synthesis, authors of the CYP review conducted a meta-analysis on the autism-adjusted CBT intervention due to the higher number of RCTs included. They found significant group differences in reducing parent/carer-rated (k = 12, g = 0.58 [95% CI 0.07 to 1.08], p = .0246) and clinician-rated child anxiety (k = 12, g = 0.58 [95% CI 0.07 to 1.08], p = .0246), but not self-reported outcomes for the children (k = 9, g = 0.34 [95% CI –0.15 to  0.84], p = .173). However, they did detect evidence of publication bias, so these results must be interpreted with caution.

Worryingly, the Autism Inclusive Research Assessment found a very low number of studies for both CYP (7%) and adults (24%) that had included autistic people in study design or delivery, and few made adjustments to either the qualitative element (Adults 0, CYP=10%) or quantitative element (Adults=7%, CYP=9%) of data collection.

Conclusions

Overall, the two reviews identified a variety of service level and intervention adaptations to make mental health care more suitable for autistic people and improve their experiences of treatment.

There was considerable overlap between findings from the adult and children and young people reviews, suggesting that adaptations could be made to benefit both groups. The findings were largely positive, with many of the strategies evaluated as acceptable and could feasibly be implemented into services. However, evidence for the effectiveness of adapted interventions was low, calling for further investigation. Furthermore, the finding that very few studies incorporated autism inclusive research practices, such as involving autistic people in study design and making adjustment to data collection processes, means future research should be geared towards co-producing service improvement measures.

Strengths and limitations

A strength of both reviews was their ability to collate a simple list of feasible and acceptable adaptations that could improve mental health care for autistic people. Moreover, the reviews included people not only with an autism diagnosis, but also those who suspected they were autistic or those viewed by clinicians as potentially autistic. This is more inclusive and reflects changes in diagnostic criteria for autism over time. Additionally, lived experience researchers were involved in each stage of the review, making the reviews co-produced pieces of research. As well as being involved in the protocol, screening, data extraction/synthesis, write up and dissemination, lived experience researchers piloted a novel Autism-Inclusive Research Assessment, which revealed important findings about the lack of autistic people involved in the studies included in the reviews.

Of course these reviews were not without their limitations, including the fact that titles and abstracts were not double screened, which risks the introduction of selection bias. Secondly, as noted by the authors, the samples of the studies included were generally quite small, with limited comparisons groups and mainly white and male. There is evidence that differences in sex, gender and ethnicity result in differences in autistic traits (Carruthers et al.,2018; Hull et al., 2020), so the underrepresentation of females and other ethnicities might mean that these adaptations might not be acceptable in these populations. There are also no studies looking at adjustments for people with ID or long-term mental health difficulties.

Clinical implications

National and international policy has emphasised improved mental health care for autistic people as a priority, i.e. World Health Organisation (World Health Assembly, 2014), the National Health Service (NHS) Long-Term Plan (NHS, 2019), and the NHS Autism Research Strategy (NHS, 2022). Both of these reviews contribute to this goal by providing a clear list of adjustments that services and clinicians can implement to improve the experience of autistic children, young people and adults. Many recommendations are straightforward and require minimum resources to implement, such as improving communication and providing environmental adjustments, but could have a positive impact on someone’s experience of receiving mental health care.

Additionally, the finding that much of the research in this area is not co-produced with autistic people highlights a massive gap in the research landscape and opens up an avenue for autism inclusive research in the future. Future research should look for a co-produced package of improvement recommendations for mental health care. Future research should also seek to recruit underrepresented groups, such a women, and black and ethnic minorities, to avoid bias.

I think these reviews are so important in that they spearhead the interests of autistic people and clinicians alike. As someone who works in research, the thing I hear most from clinicians is ‘this is very interesting, but what can I do about it?’ These reviews answer the question before it is asked, by not only giving a clear list of adjustments that clinicians can use but also specific examples of what this should look like – for example rather than just say ‘make adjustments to communication’ they explain exactly how to do this: by slowing down, using preferred language and proving written materials.

The feedback I get consistently from public and patient involvement groups is that they do not see themselves reflected in the research. Both reviews are not only co-produced by people with lived experiences and include lived experience commentaries, but they pilot a novel tool to assess the extent that autistic people are involved in the studies. The creation of the Autism Inclusive Research Assessment (AIRA) hopefully will pave the way for more autism inclusive research.

Statement of interest

Ruby Jarvis works at the NIHR Mental Health Policy Research Unit, but was not involved in either of the two reviews that are the subject of this blog.

Links

Primary papers

Pemovska T, Loizou S, Appleton R. et al. (2024) Approaches to improving mental health care for autistic children and young people: a systematic review and meta-analysis. Psychological Medicine. 2024;1–31. https://doi.org/10.1017/S0033291724001089

Loizou S, Pemovska T, Stefanidou T. et al (2024) PRE-PRINT (paper in press) Approaches to improving mental health care for autistic people: a systematic review. https://doi.org/10.1101/2023.03.10.23287101

Watch the Mental Health Question Time event that took place at UCL in June 2024

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[1] Whilst there are different terms used to refer to people on the autism spectrum, in this review we are using identity-first language (e.g., “autistic person”)