Learning Disability Today
Supporting professionals working in learning disability and autism services

‘Involve neurodivergent survivors in shaping mental health support responses to sexual assault’

First, some context around terminology and the current landscape…

This article assumes neurodivergent to be individuals on the autistic spectrum (diagnosed or self-identifying) and may be inclusive of other neurodivergent identities such as ADHD, dyspraxia, epilepsy, or non-speaking autistic people (among others). In addition, survivor is used to describe the experience of being attacked and living beyond, although there is recognition that this may constitute further labelling for some.

Autism

  • Introduction of the Autism Act and related legislation highlight concern around services’ failure to engage meaningfully with autistic individuals (DoH, 2010, 2014; HMSO, 2009).
  • Lack of training, or effective training, around autism (DoH, 2010).
  • Equality Act 2010
  • 2015 witnessed the updated statutory guidance regarding implementation of the Autism Act 2009 (Social Care, 2015), which included a section on autism and the Criminal Justice System (CJS).

Sexual assault

  • Lack of understanding as to the reasons behind non-reporting of rape and sexual assault (Less, 2002, p24).
  • Despite its prevalence, rape/sexual assault is one of the least reported violent crimes (Rape Crisis England and Wales, 2018).
  • In 2017-2018 access to specialist support services has increased by 17% since 2016 with 29% of all service users identified as disabled (Rape Crisis England and Wales, 2018).

Mental health

  • 25% of the general population experience a mental health problem at some point in their life (Autistica, 2018).
  • 80% of autistic/neurodivergent people experience mental health challenges throughout their life (Autistica, 2018).

In the context of the above statistics and guidance, the implication is that neurodivergent survivors should be experiencing improved mental health support across all areas, but there is a preference for choosing to self-refer to specialist services such as the Rape and Sexual Violence Project or Women’s Aid. How many of the 29% of disabled people accessing these services are autistic remains unclear and appropriate mental health service provision remains in need of improvement (Social Care, Local Government and Care Partnerships, Mental Health and Disability Division, 2014). Preference for specialist services is unsurprising when our agenda is often ignored or misunderstood:

 “Thirteen different mental health practitioners failed to respond to my repeated statements that I had been sexually assaulted. I was not signposted to police, accompanied to police or asked if I needed support reporting the incident myself. Rather than being seen as having a natural response to trauma, I was labelled as dysfunctional and had many records with defamatory language circulated. My agenda of sexual assault as a neurodivergent woman was not heard and the presentation of a different agenda further traumatised me. This practice needs to stop.”

Reasons for self-referral to specialist services will be varied, but are likely to include not being framed as dysfunctional, being listened to and valued.

Current context

There remains a general assumption that mental health support, with its medical model emphasis and accompanying labels of dysfunction, should be the primary support service for neurodivergent survivors of sexual assault. However, the role that specialist services play in the steps survivors choose to take to make sense of their experiences and how they progress their lives is critical.

Jointly commissioned SARCs (Sexual Assault Referral Centres) and charities, such as The Rape and Sexual Violence Project (formerly Rape Crisis), Women’s Aid and The Survivors’ Trust, experience poor funding for services which are heavily in demand. Furthermore, this lack of funding impacts on ability to work collaboratively with neurodivergent individuals in the informing and delivery of autism training to all staff to meet legislative requirements (NICE, 2010).

Effective mental health support

This should understand the individual’s context without the assumption that the individual is ‘just neurodivergent’. For various reasons, it may be difficult to voice the traumatic experience, and imposed labels of dysfunction and a victim-blaming approach, require the repetition of narratives that may exacerbate trauma and prevent survivors from forwarding our lives positively (RSVP, 2016).

Mental health provision would benefit from partnership working to avoid setting support within the parameters of a medical model framework (Fletcher-Watson et al., 2018). This would provide real choice and information about services, avoid labels, set survivors at the heart of their support, encourage individuals to establish their agenda and progress their lives and become involved in provision on a number of levels. This goes a long way to making us feel valued. The Rape and Sexual Violence Project offers one such model https://rsvporg.co.uk/.

Meaningful engagement need not be costly as simple resources can explore our real agenda (Ridout, 2016), but funding needs to be effective and appropriately directed, staff training needs to be informed by us, and our preferred support used should use language that enables us to take more control of our life and move to one where we are not defined by our experience of sexual assault (RSVP, 2016).

Working with neurodivergent survivors

All survivors of sexual assault require an individual approach, but meaningful support for neurodivergent survivors requires using our preferred terminology and methods of communication (e.g. visual, oral, text or a combination), checking that information received or provided is understood and revisiting this as memory can be a very real problem. Helping us manage sensory and social overload, reduce anxiety and address trauma in relation to our neurovergence is critical and enabling environments will address aspects such as location of facilities, lighting, heating, provision of a quiet space and clear signage and information in a range of formats. Such an environment will facilitate the processing and voicing of the sexual assault and engagement with other services such as the Criminal Justice System.

Involvement of autistic individuals

We need to respond to legislative mandates and involve neurodivergent people in the design and delivery of services. Access to neurodivergent staff, who can empathise with the different ways we process information, communicate, and experience sensory differences should be available. This would facilitate the voicing of sexual assault and the separating of trauma from the lived experience of being neurodivergent, allowing us to rebuild our lives and access support networks.

Effective mental health provision for neurodivergent survivors should:

  • be holistic
  • provides real choice about appropriate services (mental health or specialist)
  • be inclusive and address an intersectional agenda (e.g. RSVP)
  • pay attention to our unique experiences (e.g. RSVP, 2016)
  • offer a participatory approach to the design and delivery of services with (Fletcher-Watson et al. 2018)

Image: The teal ribbon is worn in solidarity with both survivors of sexual assault and people living with post traumatic stress disorder respectively. Individuals may identify as one, both, or neither.

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