Autism and Learning Difficulties

Dear All,
I wish to obtain advice with regard to my 32 year old daughter's PIP claim, within the following context. I am more than happy to reveal my daughter's name. (Forum Moderators, I do hope that this does not breach protocols). My daughter is autistic, has severe learning difficulties and was awarded an indefinite DLA award some years ago. She is in a support group for ESA (having recently been re-assessed for this benefit) and my wife, her Mother, is in receipt of Carer's Allowance for her and is also her appointee.

We spent an inordinate amount of time completing the PIP application form, providing a detailed additional sheet summary that comprehensively explained our daughter's condition, and how it impacts upon her daily living..

We stressed how the notion of a face to face assessment would be extremely distressing for our daughter. This form was received by the DWP on 31/07/19.

I include a copy of our general overview of N's condition as presented to the DWP

"N was identified as having learning difficulties at the age of 5 in her primary school. Subsequent medical and psychiatric assessments resulted in a diagnosis of autism and dyspraxia. N received a statement of special educational needs that was of such a complex manner that she received 21 hours of support, funded by the LEA. N was withdrawn from school prior to her GCSE examinations due to the stress and anxiety that she was experiencing.

N's condition is extremely complex and presents significant difficulties and challenges for her. Her social skills are extremely poor, she has no awareness of the concept of money, no understanding of public transport and no sense of danger. She is an extremely vulnerable adult.

N suffers from extreme anxiety, which she deals with by pulling out her hair - a condition known as trichotillomania and N also has agoraphobia. When N’s anxiety becomes too much for her, she resorts to verbal aggression directed at myself and her Father. On occasion, this has resulted in physical aggression towards me.

Due to her dyspraxia, N has extremely poor muscle tone and weakened core body strength. Over the years, she has developed Chondromalacia patella as a result.

N has experienced episodes of fitting in recent years. Her first fitting episode occurred when she was a very young child. Such episodes resulted in intensive investigations by Professor M at Walton Neurological centre, to rule out any possibility of epilepsy. The concluding results were negative for epilepsy, but Professor M advised that, in all probability, the root cause of the fitting episodes was N’s autism, and as such, future episodes cannot be ruled out.

As her Mother, I am N’s full-time carer and have responsibility for the management and supervision of all of N's personal hygiene needs, including washing of hair, bathing and her feminine hygiene. I am in receipt of Carer’s Allowance for N.

I am completing the form on N’s behalf and, as such, will be referring to N in the third person throughout this additional information document.".


Imagine our shock when we received a letter yesterday morning from the DWP inviting N to a face to face assessment on Friday 04/10/19, just over a week away. As her appointee, N's Mother must attend the assessment with her.

My wife is beside herself with worry and anxiety and we do not know how to explain to our daughter what she has to go through next week.

Do I have any right to challenge this request for a face to face assessment, given the impact that it will have on a mentally handicapped, vulnerable adult. It will put her into a meltdown.

If not, am I within my rights to attend the assessment with my wife and daughter?

A week of worry and anxiety awaits us and I am hoping that advice from this forum may serve to ease such a worry!

when my autistic son went from DLA to PIP they insisted on a face to face interview despite it written throughout the form that he suffers with extreme anxiety. I rang them up and wiped the floor with them and said if my son harms himself, I will hold them responsible. Suffice to say, they awarded him it for 5years. Now we are in the process of submitting his renewal. we will not put our son through the distress if they insist on face to face this time. I would urge you like us to emphasise that it will cause your daughter significant psychological distress and that she lacks insight into her autism and is unaware how her condition affects her. Also, I wonder state that Autism is a pervasive developmental disorder which means your daughter will be autistic the whole of her life, that her condition 'cannot fluctuate' as its pervasive disorder. I hate words like disorder but if it takes using it to get the benefit our children so rightly deserve, I keep calling it a disorder. Its disgusting how many hoops we have to jump through to get what our children need.

Thank you for the responses!
Interesting that Jeremy Corbyn has promised to abolish Universal Credit and change the name of DWP to Department of Social Security!

My daughter's condition is complex and will never improve. It is such that my wife will never be able to engage in employment due to the fact that she needs to look after our daughter.

Our daughter only recently had to 'jump through hoops' when being reassessed for ESA and the 'fitness for work' process, which she was awarded without question, and was placed in the Support Group.

My MP has contacted the DWP direct, on our behalf, to request that they withdraw the invitation to attend a Face to face assessment. I shall update with the outcome!. .