The National Autistic Society is deeply concerned by the Government’s proposed new regulations for the disability benefit Personal Independence Payment (PIP). This is a vital benefit for many disabled adults, helping them meet the additional costs of living with their disability.

Many autistic people already feel that the PIP assessment doesn’t recognise their difficulties and struggle to access this essential benefit. We believe these changes could make this even harder.

The proposals would change the descriptors (the things PIP claimants have to prove are problems for them) so that:

  • in the Mobility component, some aspects of “planning and following a journey” would no longer include situations that cause the individual “overwhelming psychological distress”
  • in the Daily Living component of PIP, some people who take medication to manage their condition (eg someone with diabetes) rather than receiving therapy (like dialysis) may not be eligible any more. 

There is more information about the proposals on the BBC News website.

For autistic people, the first of these proposed changes will be the most concerning. 

The courts recently ruled that someone could qualify for PIP Mobility if they cannot plan or follow a journey without overwhelming psychological distress. The Government’s proposed changes would remove this level of distress as a factor in some descriptors. As a result, claimants will need to prove that they cannot carry out a journey without another person or assistance.

Many autistic people can find it difficult to make new and unfamiliar journeys because it makes them very anxious. They might worry about the route, or unexpected changes. PIP Mobility provides people with some extra money to help them with alternative transport, or a support worker for the journey.

The impact of this proposal could be very significant and lead to autistic people not being able to get out and about. As a result they could become socially isolated, unable to visit family or get to work.

We’re concerned that this proposed change will put autistic people at a significant financial disadvantage and could put their independence at risk. Sarah Lambert, our Head of Policy and Public Affairs said, “This is a backwards step which will not help people with hidden disabilities to get the support they need to live fulfilling and independent lives. The Government must think again.

“PIP is a lifeline for many autistic adults, including those who struggle with the unpredictability, noises, lights, smells and crowds on public transport. This can be overwhelming for autistic people, who find it difficult to deal with changes and may have extreme sensory sensitivities. PIP is meant to be there to help mitigate this impact by meeting some of the extra costs being disabled might involve – like using a taxi.

The Government should halt this proposal, which would put autistic people at a significant financial disadvantage, by making them try to meet this cost themselves or face giving up their independence.

“The Government said in its statement announcing this change that non-physical conditions should be given the same recognition as physical ones. Yet this proposal acts in complete contradiction to that principle. We believe the government should take this chance to step back from this retrograde step.”

What happens next?

These changes haven’t been made yet. They do not come into force until 16 March and there is still a possibility that they can be reversed. We will be working as part of the Disability Benefits Consortium to raise this with MPs and Lords, who are already looking at ways to challenge these new regulations before they come into effect. 

We will keep updating our website as more information becomes available.

Find out more about benefits.