Open Society

Low-level support services, psychoeducation, and peer support appear acceptable and feasible, with a preference often indicated for autistic-led support. Future research should develop manualised post-diagnostic support programmes and assess their efficacy.

Research shows that autistic adults would like low-level support services, psychoeducation, and peer support, and may also prefer autistic-led support. Further research is required to develop and evaluate post-diagnostic support programmes which include these elements.

Participants reported positive experiences of participating in the programme, in particular, that it was autistic-led. Participants developed a positive and practical outlook after attending the programme.

Participant preference was for autistic-led peer support.

Many highlighted the autistic-led factor as a strength of the programme. Whilst many would have been accepting of a neurotypical-led programme, they preferred autistic-led. The autistic facilitator was felt to be more tolerant and understanding, and provided a positive role model for participants who had recently been diagnosed.

Three themes identified: ‘appreciation of the autistic-led nature of the programme’, ‘unity in diversity’, and ‘developing a positive, practical outlook on autism’.

The autistic-led nature of the psychoeducation programme ‘Exploring Being Autistic’ was highlighted as a strength, in both the in-person and online versions of the programme (Crane et al., 2023; Crane et al., 2021). The autistic facilitator was deemed more understanding, and provided a positive role model for recently diagnosed participants. SHAPE study participants also appreciated hearing positive stories of autism, while participants in the study reported by Hatton and Lee (2022) felt the content should be more positive in their non-autistic-led programme (Beresford et al., 2020). In replicating their study of the Exploring Being Autistic programme when delivered online as opposed to in-person, Crane et al. (2023) noted some unique benefits of online delivery, including increased potential accessibility, reduced cognitive load/preservation of participants’ energy for focusing on the programme, and the opportunity to form meaningful social connections with other group members. However, participants also emphasised the importance of flexibility in delivery format, as technological issues had the potential to hinder access, and some group-based activities (e.g., the use of breakout rooms) were felt to be less effective online (Crane et al., 2023).

Within several studies, autistic people reported more comfortable relationships with other autistic individuals, with a lessened feeling of the need to mask, thereby improving self-perceived confidence and communication skills (Cook et al., 2021; Crane et al., 2021; Hatton & Lee, 2022). In addition, knowledge sharing helped to formulate coping strategies, with some considering sharing with peers to be more critical than the structured educational components of psychoeducation (Crane et al., 2021). Peer-led support was also seen as more authentic by participants in the study by Hull et al. (2024), resulting in a more positive experience of engaging with support overall.

Among the studies in this review, there was a call for autistic-led post-diagnostic support; to provide better understanding, highlight the strengths of being autistic, and to offer positive role models. A desire for this positive framing of autism in post-diagnostic support was reiterated throughout many studies (ARGH, 2018; Campbell et al., 2020; Cook et al., 2021; Crane et al., 2021, 2023; Hatton & Lee, 2022; Holtom & Lloyd Jones, 2019; McConkey et al., 2021). Notably, autistic adults consistently reported greater ease in communicating with other autistic peers. While communication difficulties define an autism diagnosis, recent evidence has shown that peer-to-peer information transfer among autistic people can be highly efficient, suggesting that post-diagnostic support co-produced and led by autistic people may provide benefits (Crompton et al., 2020; Hull et al., 2024).

Furthermore, many third-sector organisations are autistic-led or co-led, and commissioning such services nationwide could contribute to the creation of an expert post-diagnostic service.

Loneliness is another risk factor in the general population that is consistently associated with suicidal ideation and behavior (McClelland et al., 2020; Shaw et al., 2021; Stickley & Koyanagi, 2016). A common misconception is that autistic individuals prefer social isolation (Mazurek, 2014). On the contrary, they often want to develop relationships but may experience social difficulties resulting in unfulfilled social needs (Bauminger et al., 2003; Ee et al., 2019; Hedley et al., 2018). This has been a topic of interest in recent studies (Hedley et al., 2018; Schiltz et al., 2021), and a recent systematic review reported various factors associated with increased loneliness in autistic adults such as autistic characteristics, negative experiences and learned helplessness, anxiety, and depression and suicidal ideation (Grace et al., 2022). We also expect to find an association between loneliness and increased suicidal behavior in our Dutch cohort. A recent study in this cohort revealed that autistic adults’ loneliness and stress levels remained stable over time but were consistently higher than those of non-autistic adults (Scheeren et al., 2022).

Consider an asynchronous or a hybrid option. The pace of most synchronous (real-time) meetings favors people who can speak fluently. That disadvantages us.¹ Asynchronous meetings (e.g., by email or instant messaging) allow us to take as much time as we need to respond, and don’t require us to be ready to communicate at a specific time, among other benefits. If asynchronous communication can achieve the purpose of the meeting, consider offering it as an option or as an alternative.

Research has established that there is a heightened risk of suicide in the neurodivergent population. Neurodivergent is an umbrella term that describes people with variation in their brain functioning, and can include conditions such as autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD), dyslexia, dyscalculia, dyspraxia and tourette’s syndrome. The neurodivergent population is often at risk for a wide range of additional health risks leading to a lower life expectancy, health and mental health issues and overall lower quality of life. These health concerns are often exacerbated by 1) being misunderstood and unaccommodated by our neurotypical society institutions and systems and 2) sensory overwhelm. It is therefore not surprising that recent research has shown that the risk of suicide is significantly higher for autistics and ADHDers overall.

Another mechanism may be found in the relationship between high cognitive ability and "camouflaging"[87], where individuals suppress less socially accepted behavior to fit in. Camouflaging is a universal behavior[88] that has been studied with particular interest in autistic individuals, who engage in this behavior more regularly[89]. In studies of autism, camouflaging has been associated with higher rates of anxiety and depression[90], perhaps due to less support resulting from successful camouflaging, which would tend to delay diagnosis[91]. Consequently, camouflaging in autism is correlated with increased suicidal behavior[92]. Increased cognitive ability may therefore be linked to maladaptive camouflaging that further increases risk for mental health issues in autistic people.[93]

In addition to excessive baseline cortisol (think flight or flight adrenal response) linked to autism, it is likely that demonstration of exceptional cognitive ability raises parent, teacher, and peer expectations[85]. Any inability to meet these elevated standards could result in further activation of the hypothalamic-pituitary-adrenal axis, potentially explaining the higher rates of suicidal thoughts we observed in 2e children compared to other autistic children[86].

Research studies consistently find heightened risk of suicidal behaviours, ideation, attempts and deaths in those with ASD and ADHD, especially if they are un or misdiagnosed. From the research, the risk of suicidality is higher for those with ASD and higher cognitive abilities, and even higher for those with ASD and other comorbid conditions. The risk of suicidality is higher yet again for those that are twice exceptional, defined as high IQ (>120) combined with another disability, such as ASD[2],[3].