Written evidence from Rosalyn Lord (HAB0077)


I am the appointee for my adult son (35 years) who is autistic. I just want to state where I feel the application for benefit support fails to connect with many autistic people. I have post graduate qualifications in Autism and have worked professionally in the industry for over 30 years. I am a Disabled Student Allowance assessor for Student Finance applications so am aware of the need to gather accurate information.

As an autistic person, the forms often fail to allow for the fact that as a developmental disability, he is unlikely to improve skills for life / employment within the time periods of the awards – 2 – 3 years. Any development is likely to be very small and slow. The dichotomy is he has islands of talents (a graduate of computer coding, but unable to understand money, people/communications and decision making in all forms).

The PIP form is very ‘health’ focused – yet does not allow for him being unable to monitor his own health – or contact others for help e.g. GP / 999 etc. The section on managing health assumes you are on medication or treatments. His challenge in this area is common to others with autism and yet attracts no ‘score’ in PIP.

The ability to read suffers from the same issues. Many are able to mechanically read yet unable to understand the message the words convey (nor always act upon them appropriately). The mechanical aspect of reading scores points – yet does not reflect the challenges of understanding. Being able to recognise this and seek support of others then requires good communication skills and sagacity, sadly not always seen in autistic people.

On mobility, planning and following a route etc.  No account is given about being able to coordinate the various strands of information, to hold on to that, and adapt plans in the face of any changes. This is a common problem for many autistic people. Also, they can struggle to understand rules of the road, judge speed and distance in order to cross safely. They can struggle with the dynamic problem solving and decision making needed as well as knowing when to ask for help and recognising who is safe to ask. These things do not appear to be significant on the forms and yet prevent many autistic people from being able to access the community as others do without thought.

My son was diagnosed at 18 months of age, has been in receipt of DLA, now PIP, and Incapacity Benefit now ESA. He would not manage these things himself, as his main carer I must interpret him and the world to him. This is not given enough credence in face-to-face interviews. Meeting unknown people, being asked multiple questions in a short time frame (appointments are time limited) causes him distress. In all other areas of life, we prepare him in advance of all situations, we rehearse, and we explain. This is not considered during interview processes.

We feel an online application system would be helpful, allowing us to save the documents so we can be reminded later if needed would be helpful. Questions which relate to both benefits should be cross referenced – if you cannot travel alone safely, then how would you be able to attend a workplace alone or if able to read mechanically, or hear the spoken word, yet not understand the message how would that impact your ability to work? 

The ’spikey cognitive profile’ of autistic people can give rise to pre or mis conceptions, that being able to do X means you ought to be able to do Y,Z does not necessary occur within a profile of autism and is unhelpful in the application/interview process.

Interviewers often have no relevant experience of autism and the effects this has on an individual. It is not a ‘health condition’ and not all medically qualified interviewers will understand it, its implications or know how to accommodate and make reasonable adjustments. The procedure therefore discriminates.

When invited for interview, we asked for a range of reasonable adjustments, such as photographs of the venue, the interviewer and asked he be the first appointment and for that not to be delayed. None of these things were provided. The appointment was not the first and it began 20 minutes later than booked. This almost allowed his anxieties to be heightened not helping him cope with the interview process onward.

If a person is in receipt of a social care package to ensure safety in many areas, written by a social worker, who has spent some time with the individual, why can this not constitute as evidence to answer questions e.g. Care Plan states unable to make a meal – would starve without support – this is the evidence being sought in the application form and during the interviews.  This is not an efficient use of resources.


November 2021