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Working with the Integrated Care System to understand autistic people’s experiences of diagnosis

We have recently started work on a brand new peer research project that is looking at the support people receive around a diagnosis of autism.

We believe in co-production and using the power of lived experience to make sure services meet the needs of the people that use them so we were keen to get involved in this project. The voices of lived experience underpin the research, with peer researchers with lived experience of being autistic carrying out the project to help identify ways to improve the speed and process of being diagnosed with autism as an adult.

Lindsay Henderson, Head of Communities at Your Voice Counts, said:

“This is a fantastic opportunity for Your Voice Counts to use our expertise around supporting people with lived experience to take on roles that allow them to use their voices, insight and personal experiences to make a difference to how services are delivered. Almost half of our team have lived experience of learning disabilities or being autistic so we are passionate about improving services and finding ways to overcome the health inequalities that autistic people face. The Integrated Care System is keen to understand how support can be improved for autistic people and we are delighted to be involved.”

To deliver the project, we’ve recently welcomed two new Peer Researchers to our team who are going to carry out a series of interviews with autistic people to gather their views framed around three key questions:

  • What support would have made a difference to you while you were waiting for your diagnosis?

  • What support would have made a difference to you after your diagnosis?

  • Who did you expect would provide this support?

Meet Dharma

What made you want to join Your Voice Counts as a Peer Researcher?

As a recently diagnosed autistic person, I have experienced first-hand the diagnosis process in full. I have found obtaining a diagnosis for autism to be very liberating - it has offered me a lens through which to review my past in order to better navigate my future. However, while the diagnosis itself was handled brilliantly, I felt there were definitely gaps in terms of support provision pre and post diagnosis - and waiting times in the region are still too long. This project offers me an opportunity to flag up these issues, based on my own and others' lived experience, and offer constructive feedback to help address such.

What are you looking forward to most about the project?

This is a passion project for me as, like many autistic people, autism itself has become a key special interest! I am mostly looking forward to getting out and about, meeting other autistic people in the region and finding out more about the wonderful support that already exists.

What are your hopes for this project?

An autism diagnosis has been such a turning point in my life in so many ways and I really want it to be accessible to anyone across the region who could benefit. I also feel that while there are some dedicated organisations working hard to offer pre and post diagnostic support, there are still a lot of gaps. In addition, much of the mainstream support being offered to people (including myself) may not be appropriate for autistic people. Being able to present and evidence all of this and more as part of the project will hopefully offer others in the region, either diagnosed or seeking diagnosis, better prospects for the future.

Meet Anthony

What made you want to join Your Voice Counts as a Peer Researcher?

The reason I joined Your Voice Counts as a Peer Researcher for this project was due to my own experiences of being diagnosed as having autism just this year. My experience of the process and system of a diagnosis was an experience of anxiety and a feeling of being in limbo with the timescale of getting a diagnosis and the communication between each part of the assessments. The time of my diagnosis took three years with the first assessment and second assessment being a year apart with little or no communication and I do believe that the process of getting a diagnosis needs to be challenged and that support is needed during the time of being assessed.

Also, another aspect of my interest in peer research was due to my sociology degree that I just completed this year. Sociology is about looking at societies and human social structures, questioning what are the challenges and barriers that influence everyday social relations/actions and how they can have a negative or positive influences on an individual level or society level.

What are your hopes for this project?

I am mostly looking forward to meeting and talking to others about their experiences of being diagnosed with having autism and to build a practical report around their experiences and to get a true feeling of what is needed and should be done for the better of adults with autism.

Look out for updates from the project and information about how to get involved coming soon.


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