In 2023 we assembled a steering group comprising people with a range of lived experiences with complex communication needs and neuro-developmental conditions.
We hold three meetings per year to ensure that the project reflects the views and unique insights of those directly impacted by this research, and that the project is conducted in a way that facilitates inclusion and maximizes participation.
The steering group will play an active role in deciding the project’s aims and methods going forward, as well as how results and conclusions are communicated and disseminated.
Anna
I am a Clinical Lead Speech and Language Therapist (Autism Support) at Sheffield Children’s NHS Foundation Trust and I have worked with children who are non-speaking for over 20 years. I am particularly interested in sensory processing and healthcare accessibility for children with communication needs.
Emma
I’m a City Wide SENCO in Sheffield.
I have worked with a range of children and young people with a variety of needs including Autistic children.
I am passionate about improving the life chances for children and young people with Special Education Needs.
Katie
I am mum to Paddy who has a severe learning disability, autism, and is non verbal.
I currently work in a SEND school in the north east and am passionate about supporting and advocating for people with communication difficulties.
I am delighted to be part of the steering group for this research. I am so grateful that this area is being looking into.
Kay
I’m mum to 2 kids living in Gloucestershire. My son has Autism, GDD and a genetic disorder resulting in learning difficulties and complex communication needs. To communicate he uses a mixture of gestures and PECS but mainly uses Makaton. I became interested in this study as I’d like to understand more about language trajectories for children like him as there is very little information available around this. I joined the steering group in May and have enjoyed listening to other parent / carers & professionals input & suggestions. I am really looking forward to help shape the project and take some great insights away.
Lucinda
I am the mother of a young person with complex autism and learning disabilities. I promote acceptance and awareness of individuals, families, and caregivers affected by severe forms of autism by giving a voice to their realities and needs. In my spare time, I am a writer of fiction and non-fiction and I like to run (slowly) and read a lot – not at the same time. Lastly, I love this recent Twitter quote from father, director, writer and teacher, Stephen Unwin (@RoseUnwin): “In our championing of the many splendid things that so many learning disabled and / or neurodivergent people can do, we must be careful not to marginalise or forget those who can do less.”
Natalie
I am a Specialist Speech and Language Therapist working for Surrey County Council. I work in mainstream and specialist schools at primary and secondary level. Linking to Project ISLAND’s focus, my areas of interest include autism, speech and unconventional language use.
Nicola
I’m a Speech and Language Therapist working at Blossom House School which supports children aged 3-19 who have speech, language and communication needs. I have a particular interest in supporting speech across the school, including supporting speech in minimally and pre-verbal children.
Rachel
I’m an assistant Headteacher at a Special school in South Yorkshire.
Rhys
I am a registered learning disability nurse with both a professional and personal interest in autism, and how trauma impacts/relates to a diagnosis.
I have a diagnosis of “high functioning” autism or Aspergers and am also father to an autistic son who has verbal and behavioural difficulties.
Toni
I am mum to three children, all with autism. My youngest and eldest are both pre verbal. We use a total communication approach with both my children. My eldest uses AAC device, voicing, talk tools, now/next boards, visual timetables, colourful semantics, pointing, etc. My youngest uses the same approaches but not the AAC as he is classed as more verbal. I manage my children’s programmes as both are home schooled, although Harris attends the same school as his sister part time. I have a biological sciences background and am an ex high school science teacher. As my background is scientific I am very passionate about research. I am constantly researching new approaches to find ways to help my children so that they can one day advocate for themselves. I am now a support worker one day a week, and also have recently trained as a SEN parent advocate, helping parents get the EHCP their children deserve.
Wendy
I work supporting my granddaughter who has autism and is non verbal.
I have 4 grandchildren and all have autism. My son is 34 and recently diagnosed with autism.
As a family we are all passionate about new research in speech and language disorders within autistic children. All of my grandchildren and son have experienced some form of speech and language difficulties.
I have worked with Daisy for nearly 7 years. We use a total communication approach. This includes Talktools as part of our speech and language program. We also use Proloquo to go which is an AAC app with symbols and text to speak, this “gives” Daisy her voice.
Our whole ethos is to empower Daisy to be able to advocate for herself both now and as an adult.