I am working on translating research papers, and I have come up with a short survey .click Here to go to the survey


Results from benefit phone call survey

Summary of : A online survey of 186 autistic people’s experiences of phone calls about benefits


Aim – To find out how Autistic people and those supporting then experienced DWP phone calls.

Method- online questionnaire, snowball sampling via social media and initial e mails.

the first 100 people filled out the survey in 25.5 hours. Participants gave permission for information to be published and presented.

Participants- 186 adults across age spans 18-65+ biggest age group 32-45 (30%)

geographically based across the country.

Female (55%) male (39%) Trans MTF (1%) other (9%).

Formal diagnosis Autism (20%) formal diagnosis Asperger’s (40%) going through diagnosis (9%) filling out on someone’s behalf (23%) other  (9%).

main benefits talked about ESA (47%) PIP (36%) DLA (38%).


Results headlines

 1.6 % or participants reported feeling suicidal due to phone calls about benefits.

People experienced high levels of difficulty making phone calls

on a scale of 1-10 if 1 is very easy 10 is very difficult; 51% people rated the ease of a conversation very difficult , 11% of participants rated difficulty between 1-5

Issues experienced were diverse

Main issues identified by 50% or over of participants

– Having to think of a answer immediately (82%)

– anxiety before the call affecting a persons day and meaning they think less clearly                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        during the call (79%)

– forgetting to say something and not being able to add it later (72%)

– finding it difficult to explain the problems in everyday life (71%)

– being given too much information (66%)

– knowing what to do if they are misunderstood (66%)

– knowing the consequences of the call (63%)

– Knowing how long you have to wait to speak to someone (52%)

– knowing how long the phone call will last (50%)

– waiting for decisions (50%)

– in addition 52% left other comments example:  ” the anxiety I have to go through is unbearable”


Effects for callers were wide ranging

The Effects on callers that were marked by more then 50 % were;

82 % of people said it made them Anxious

61% of people said it made them frustrated

61% said they felt confused

example comments

“Hopeless. I often feel suicidal after using the phone because it shows me my complete inadequacy as a human.”

Negative impacts on a person’s life after the phone call

Below are issues experienced by 50% or more of participants

– 56% of people experienced ” shutdowns” ( like a meltdown this is involuntary and means a person withdraws and may be unable to respond to those around then)

– 53% headaches

comments left included “I’m exhausted. That is my one thing I can manage for the day, everything else is then lowest possible standards. It also takes me many days to get myself ready to call, think what I will say, what they might ask and then days to relax afterwards. If they make a mistake and I have to phone all over again I will often cry with frustration. Takes so much out of me.”

Long lasting Effects

People reported the Effects of the phone call on them lasting for anything from a few minutes to a week , Effecting a wide range of health issues including epileptic seizures  and for some this included suicidality and not being able to eat

It is possible to make things better

Some suggestions were provided in the hope of stimulating more suggestions

Having lists of questions asked in public places e.g Libraries (67%)

person taking the call to wait for responses (suggested 10 seconds) 48%

the person who answers the phone to speak slower (47% )

67% of people provided more feedback

whilst deliberately not a option so as not to lead people 28% of participants commented independently that other forms of communication would be better

the need for Appointees is not always understood by call centre staff

a number of people said that they acted as appointees for a person unable to make phone calls but it was difficult for this to be accepted by the call handler who might ask to speak to the claimant (who could be non verbal and thus unable to speak)


“Let people know that despite data protection, my son will be unable to speak over the phone. Some organizations even make threats that things like benefits could be stopped if they cannot speak to him.”




It is very obvious that telephone calls cause great distress to many autistic people and for many it is not possible whilst some people have appointee

because they are unable to make the phone call the system seems unable to verify this meaning people could be denied access to benefits they are entitled too.

people are experiencing Effects on their mental health before and after the call for some this can increase the risk of Suicide


author contact

Robyn steward

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