By Susan Dunne
Personal independent payments (PIP) have gradually replaced disability Living allowance (DLA). In line with recommendations under the Care Act, PIPs are designed to give recipients greater independence through financial control. But for some claimants, including those with autism, the application process can throw up challenges which might place them at a disadvantage directly related to their disability.
Autism presents many challenges including social and communication difficulties, problems focussing on the bigger picture, organisational issues and social isolation, alongside sensory processing differences. As a “hidden” disability, the impact on the capacity to cope with everyday life may not always be apparent.
Here I outline how support workers can help with the application process by accurately representing the impact autism may have on the individual
Conducting the interview
Anxiety is a common feature in autism. This can be exacerbated if things are not clearly explained in a way autistic people understand. Taking time to explain the PIP process and what is required of them before starting the application can help, as will clearly explaining your own role in supporting this.
Face to face situations such as completing a PIP application with a support worker may prove challenging to autistic people, particularly if they do not know the support worker very well. Setting up the room so they do not necessarily have to look at you throughout can make it less stressful, removing the need for them to have to process facial expressions and letting them focus on the questions. Ensuring you are on time and that there will be no interruptions will reduce anxiety. A quiet space, and letting the person know that they can take a break at any time, can help.
Due to differences in brain development, autism can lead to delayed processing. Allow time for this and do not rush to complete the form. It is too easy for people with autism to say they have understood something or give a quick answer to cover up a need for more time to think. If necessary return to the same question later. If someone is struggling to take in verbal information, writing it down or using a preferred communication method such as emailing, which the person can refer to and process in their own time, can help alleviate anxiety.
Filling in a PIP form can last more than an hour, so it helps to let the person know approximately how long it will take. If a person is particularly anxious or struggling, try doing it in separate stages.
Working with literal understanding
Being clear in how you communicate is essential when working with people with autism, who often struggle to understand figurative language and can be overwhelmed by a long flow of speech. Keeping questions clear and concise, and possibly breaking them down into segments will make this easier.
Short or monosyllabic answers could in the eyes of the autistic person be perfectly rational responses to a question, but they may have failed to understand that a wider explanation and exposition are necessary.
Asking an autistic applicant whether they can do their laundry, for example, may elicit a “yes” as the person knows how to operate a washing machine. What this may disguise is the fact that someone is unable to organise their time to do their washing. For example, James* said yes, but he was dependent on his mother visiting at periodic intervals to do it for him, as he could not decide which of his clothes would be classed as clean. When she was ill he wore the same clothes for months.
Alex* was asked about his social life and responded that he saw his friends “regularly”. Digging a little deeper revealed Alex would only see the same person about once a month, on their terms.
Appearances can be deceptive
When supporting individuals on the spectrum who live independently, daily struggles may not be immediately apparent. A person who is articulate, intelligent and may be holding down a job can seem an unlikely candidate for a PIP, but this can be deceptive.
Michael* has a degree and works for an IT company. Whilst he manages to work within the imposed structure of his job, he struggles to remember when to eat at home and lives mainly off snacks. He cannot organise his life to clean the house or cook regularly and is socially very isolated.
An applicant who is able to access public transport may not appear to have mobility issues but can struggle due to sensory processing differences. John* hates the sound of high pitched children’s voices and is hyper sensitive to touch and smell. He is liable to become very distressed if these become too much and avoids public transport. He depends on his father to drive him to appointments wherever possible, although on the surface he would have no problem working out a bus route or paying his fare.
To give a PIP application the maximum chance of succeeding it is necessary to focus on the challenges a person faces, but it is also important to reassure them they are doing lots of things well and to highlight areas where they may be particularly successful or especially talented.
For adults who have received a late diagnosis or struggled through without help, acknowledging the impact that autism has on their daily lives may have a profound emotional effect. A person with autism may not see themselves as having a disability. Stella* said: “I thought I was basically coping but I came out of it feeling really down and useless. I had to look at my life and see what a mess it was”.
In a survey by the Disability Benefits Consortium in November 2017, 68% of respondents with autism said PIP assessors did not understand their disability and 80% said the assessment made their health worse because of the stress or anxiety it caused.
For autistic people a face to face assessment can provide additional challenges. It is therefore helpful to make assessors aware of this on the application form and suggest that a face to face interview may not be beneficial. If your client is called for an assessment take time to talk through what this will involve. It will be helpful if they can attend with support from someone they know and have worked with.
Many people with autism are missing out on personal independent payments through no fault of their own. By being aware of their struggles and mindful of how you communicate you will go a long way towards helping them get the assistance they need.
*All names have been changed
Susan Dunne is as autism self-advocate and writer. She works as an autism trainer and support worker and has a post-graduate certificate in autism from Sheffield Hallam University