Many autistic people have difficulties with daily living skills. Some receive benefits or PIP (Personal Independence Payments) to support them. The assessments for PIP may not recognise the hidden difficulties of autistic people. This project aims to understand these hidden difficulties, and will produce evidence and a guide for those applying for disability benefits.
The need for the project
Applying for PIP involves completing a form, then a face-to-face assessment that currently does not assess ‘hidden’ disabilities. The assessor must decide whether the person's difficulties fit the medical definition of autism - they must be "medically reasonable".
We know that many autistic people have difficulties claiming benefits but there is limited research. A few studies have looked at children or adolescents, or adults with learning disabilities. These studies highlight that autistic individuals often have challenges applying linked to hidden difficulties such as sensory issues, motor skills and mental health.
This study aims to show that certain autistic difficulties are not being taken into account with benefit assessments.
The research process
The researcher will have interviews with twelve autistic people who have been awarded PIP. This should identify common difficulties with certain PIP Activities. For example, "Which steps/components of preparing food give you difficulty?"
The information collected at the first stage would be used to design the survey in the second stage.
A survey will be completed by 200-300 autistic adults. It will go out to those with and without experience of applying for PIP. The survey will cover a range of challenges that have been identified in the first stage. Possible difficulties such as executive function, working memory and distractibility, sensory issues, camouflaging behaviours, fatigue and motor skills.
Using the information gathered from stage two, we would develop a guide for autistic people and their advocates on applying for PIP.
How will this improve lives?
If we can give autistic people and families the guidance and evidence they need to complete an application for PIP they are more likley to be awarded the benefits. It will also reduce the need for stressful tribunals. PIP can be spent on whatever an autistic person needs - such as assistance with paperwork and phone calls, promots for self-care, or even tuition fees, which could help autistic people to get work or move up their chosen career ladder. This support will help them to live more independently, and be healthier and happier. It will also reduce the support they need from any family and friends.
This is a Charles Sharland Autistic Grant Scheme Award, supported by businessman and autism philanthropist Charles Sharland.