World Autism Acceptance Week 2022: Interview with Dr Vicky Slonims
In honour of World Autism Acceptance Week, Emma Yu* caught up with Dr Vicky Slonims** (pictured) to learn more about her research with autism and her experiences as an Allied Health Professional in research.
I am interested in learning about how you got into academic research while working as a speech and language therapist. Do you mind briefly telling me what your journey as an Allied Health Professional was like?
Being an Allied Health Professional (AHP) working in research can be challenging. Initially, when I started my PhD, I did not receive much support and had to secure external funding myself. I then worked as a clinician completing my PhD at the same time.
Going on from that, what has been more helpful is having access to King’s College London’s information resources. My affiliation has primarily been with the Institute of Psychiatry, Psychology & Neuroscience, which has allowed me to collaborate on research with people from there. Regarding the relatively new King's Health Partners (KHP) Women and Children's Health, I am very optimistic that we will be able to work with the Institute to enhance careers for academics.
Because I had to work my own way through much of this journey, I would like to make it easier for subsequent AHP researchers to get the resources they need. I currently chair the Education and Training AHP Research Career Development Committee, which is supported by KHP Women and Children's Health. Our aim is to enhance academic opportunities for AHPs, psychologists and Health Care Scientists to become clinical academics.
I think there are many ways we can support individuals doing research, and as peers, sharing our experiences and working together to address barriers. With the National Institute for Health Research’s newly announced strategy for AHP-led research and innovation, I believe our experiences will be better moving forward.
Tell me about some of the problems The Lancet paper identified with autism research, assessment, and treatment.
For this commissioned paper, the author group was a large group of leading academics from all around the world. We were asked to write about important issues across the globe for people with autism.
In high-income countries, the issues are around recognising the diversity of care needed for individuals with autism and making sure individuals with all types of experiences are accessing interventions. There are people in high-income countries who are not accessing interventions due to problems with equity of access or the fact that some systems are not designed in a way that people want to access them.
We also need to enhance support for people with autism in low- and middle-income countries (LMIC), where there may be no access to services that can adequately assess and diagnose these individuals. In high-income countries, you might expect to see a highly qualified range of professionals working as a diagnostic team, but this is difficult to replicate and may not be sensible in other contexts.
Therefore, it is important to think about how resources can be allocated to provide a good and equitable service to people, especially in LMIC. The paper focuses on providing necessary information to governments and world health organisations to encourage them to invest in diagnosis, care and support for people with autism.
What does stepped care and personalised evidence-based models of assessment and intervention for autism entail?
The stepped care approach is about meeting need in a timely fashion, where services are individually tailored but with distinct levels of specialism and intensity. This means that you might assess a situation and provide some immediate low specialist or intensity intervention, which supports a family pragmatically.
You would then vigilantly monitor how an individual and their family manages, so that if more care is needed, you would step up to the next level of care, ideally without delay.
Additionally, we know that people’s needs change over time. We can predict times when they might need more support, such as when transitioning between schools, during adolescence and early adulthood.
At these times, individuals should have access to higher levels of support in a timely way. We need to alert providers and funders of the potential for additional care, which will vary in terms levels of intervention and support. This will help us meet people’s needs in the most efficacious and equitable way.
Why is it so important to include individuals with autism and their families throughout the lifespan?
Involving people with autism, families and carers is essential to help us shape the support that is needed. These recipients of care can tell us whether it was beneficial or not, what was needed and how it should be changed.
Families of an individual with autism can also give us insight into their complex lives and what circumstances can create a need for more support, such as a family bereavement or perhaps a house move. Although we think we can anticipate need, we need to find out from people with lived experience about the key issues for them.
They often tell us that their problems increase when there are delays in the response from services, so we need to design services that can always be receptive to people’s needs.
In terms of lifespan, there is now more thought going into what support is needed for people going into elderly care or for those who have additional health needs. One of the things we talk about in the paper is how people with autism experience inequity and do not have the same access to healthcare.
They may have more difficulty explaining their illness or getting help, especially for people with low levels of verbal ability. Therefore, we need to listen to feedback from individuals and families throughout the lifespan to understand what their needs are at particular times.
What do you hope this report will accomplish for autistic individuals in south east London and beyond, and how do you see this impact growing in the future?
We are in a high-income country, and we do have a relatively well-resourced level of service in south east London. A key point in this paper is that we should acknowledge that there can still be unmet need in these locations and that families may be impacted by complex social circumstances.
Throughout this report, we have identified the need for individualised care and evidence-based provision. We hope that providers of services will look at the information in this paper and make judgments about whether they are addressing these issues in their own locality.
Thinking about autism awareness, we are now in a very interesting time. People with autism have an increasingly powerful voice in terms of what research should focus on and how it should be delivered and interpreted. Different perspectives can be challenging, but it is up to us to listen to what is important to people with autism.
Bearing in mind that they will have a range of different needs and expectations, we must make sure we listen to all of their voices. The Lancet paper is strong on the autism voice, and I am pleased that we emphasised a focus on research that can improve the lives of people with autism in the here and now.
Thank you Vicky for speaking with us about your experiences and your research with autism. Watch the full interview here:
Learn more about World Autism Acceptance Week and get involved here.
The paper “The Lancet Commission on the future of care and clinical research in autism” was published in The Lancet on 15–21 January, 2022.
* Emma Yu is a third-year Boston University student doing a seven-week comms internship with the KHP Women and Children’s Health team, to focus on KHP WCH content for the website and future bulletins.
* Dr Vicky Slonims is a senior consultant speech & language therapist at Evelina London Children’s Hospital’s Newcomen Centre and adjunct reader at King’s College London.