Barriers That Neurodivergent People Experience In Accessing Care And Support

Amy Gray, Director of Operations at KIM-Inspire, discusses barriers that neurodivergent people experience in accessing care and support.

Amy tells us:

In a recent Cross-Party Autism Group meeting with members of the Senedd and other stakeholders, including those with lived experience, we discussed the barriers that neurodivergent people face in accessing appropriate care and support and the negative impact that these barriers can have on their mental health and overall wellbeing.

This is something that we have heard lots about during our work on KIM’s ND Girls Project- from the girls themselves and from their family members, as well as from the neurodivergent colleagues who are instrumental in designing and delivering this service.

A ‘lack of engagement’ is often cited as the reason for discharging the young person from other services. Whilst we recognize that time pressure across services contributes to this decision-making, at KIM we understand that neurodivergence often contributes to difficulties in social interactions. We therefore need to approach the work through an ND lens, considering what we can change about how we do things, to ensure ND people can access, shape and fully participate in their own support.

Some of the ways in which we try to reduce these barriers in our ND Girls project are adjustments and considerations that can make a huge difference in increasing accessibility and comfort when trying to get help and support. We often say, ‘It’s not rocket science’ (which is fortunate really, as none of us are rocket scientists!), it’s about ensuring that we are person-centered, strengths-based and that we adapt and respond to what the participants’ need.

Communication:

We know that some people may not feel comfortable talking on the phone, particularly at the initial point of contact, so we are happy to communicate via email and text so that we can get to know each other and gradually build a rapport. To date, most participants have preferred to meet in-person after this initial communication has been established.

We try hard to keep our communication as clear as possible and take care to check that we understand what people are telling us and that we have been understood.

We share a range of resources, for different learning styles. These might be articles, infographics, videos or podcasts.

Environment:

We think about the space in which the interaction is taking place, considering temperature, lighting, furniture placement and overall comfort.

Where possible, we use adjustable lighting to reduce external sensory input. We have portable lamps that we take to different community buildings in which we meet people.

We always have sensory aids on hand

We can reduce background noise, if its presence adds to people’s difficulties. We can also increase background noise, if that works best for their brain.

We have a range of items available for doodling, drawing, writing, colouring etc. These activities can provide a focus, reduce anxiety and increase regulation.

Expectations:

Our expectations are simply that the girls and young women come exactly as they are at that time, and we hope that as they get to know us, the need to ‘mask’ who they really are reduces.

We consciously do not have expectations of the following- as these things can be really challenging for our young people; neurotypical communication styles such as eye contact, verbal interaction, sitting still

Time:

We understand the importance of allowing the right amount of processing time for everyone, which is something that we gain more knowledge of as we build a collaborative relationship with that person.

We recognise that neurodivergence rarely exists in only one family member and we anticipate that the parents could be neurodivergent themselves and therefore these adaptations are available to them too.
The principle that underpins the work is Ross Greene’s ‘Kids do well when they can’ (although we roll this out to include all ‘People’!) and that if they aren’t doing well, it’s because things need to change- and that for things to change internally, adaptations need to be made externally, to their environments and in other people’s approaches to them.

Kids Do Well If They Can – by Dr Naomi Fisher – Think Again

As practitioners, it is our responsibility to be part of making those changes -to create an environment and use an approach in which the sessions are as comfortable, accessible and valuable as possible. When we find out what works best for that young person, we then have a framework which is useful in their daily life, such as in school or work, at home, in health appointments etc.