Pip assesment for asd

Hi folks,

my 18 year old son is on the autistic spectrum and also had severe social anxiety.we have been in receipt of dla for a few years and have recently received paperwork for changing to the new pip benefit.got letter yesterday to attend face to face asessment.I m really anxious now never mind my son.

can anyone give me some advice or point me in the direction of some advice. I'm dreading telling him we have an appointment and i know I'm going to have to answer hundreds of questions over and over from him on what to expect.😢

14 Replies

  • We had an assessment to establish if the application should be in my name or my son's which was quite simple but I think some people do have more detailed assessments so I don't want to mislead you. I came across this group recently which might be able to help you. I haven't used them myself but I have heard from others that they can help. fightback4justice.co.uk/

  • Thanks.will have a look.we had an assesment wen Michael turned 16 in reguards to who s name claim should be in.I'm his appointee everything is in my name and i have to be there b4 any one can communicate with Michael.think that might b asessment you r speaking about.it was home visit for five minutes.

  • Have you tried the National Autistic Society? They may be able to point you in the direction of a local organisation that can help. autism.org.uk/

    I've just sent off a DLA form for my son. We applied over a year ago and were rejected. Now we have a formal diagnosis. This time, a friend of mine who runs a local childrens centre and nursery referred me to a council led initiative to help fill in the form. I am so glad she did because I believe it will make a difference. I still may not get anything, but if not, they will help with the appeal. Try to find someone who can help you through this process. It's best not to do these things on your own. Good luck and let us know how it goes! x

  • Thank you very much.we applied for dla after Michael was first diagnosed 3/4 years ago and we're award high rate care middle rate mobility indefinitely he is 18 now and pip has come into play.

    Will let you know how I get on and good luck with your dla claim too.it helps if you have an official rep who knows the system.we had help from camhs originally.

  • There is a site called Benefits and Work that is meant to be really good. Especially if it get rejected and you need to appeal. Just be prepared though as I was talking to lady recently and her daughter has severe autism and she doesn't talk and she was rejected for PIP. They are doing it to a lot of people who genuinely deserve it. It's disgusting. Just get as much help and support you can. I have 2 sons with autism and I absolutely dread when they go over to PIP.

  • Go and talk with your local autism society or contact the National Autistic Society autism.org.uk/. My local group (Autism Wessex) have been exceptional in winning our cause for my Grandson with Asperger's. Fight the assessors all the way to a Tribunal if you have to.

  • Thank you.have just made contact this morning with autism uk ayrshire branch .hopefully they will be able to put both mine and my son's minds at ease.

  • Excellent. I wish you every success. Just a suggestion which your branch may make anyway - have a copy of every medical and educational assessment ever made for your son ready to present, or to send, to back up your claim. Do not hold back anything for your cause.

  • Thanks.lady from ayrshire branch called Fiona been in touch and she is coming out for a home visit in Friday. Feeling a bit better now I have some support from people like yourself and autism uk workers.

    I really appreciate the support.☺

  • Hello. I help a lot of people to apply for PIP and ESA and I'd agree with what others say. Apply to be his appointee, if you are not already. You can look this up on the Net. Also he really ought to have a recent assessment as an Adult or in Transition. Has he had extra help at school, or did he go to a Special School or is he is a Special Needs College Course now. You need to get that information together too - hopefully you did this before you sent in his PIP forms. If not, make photo copies of the reports and send the originals in to the Organisation (is is Capita or Maximus up there with you? Put his name and the PIP number on the top of each page, remember.

    What date is the face-to-face assessment? It is necessary to send it in before the date, asap, so that it arrives straight away, as they will not accept new info on the day but have the copies with you in case the assessor has not seen them - but make sure he/she knows that you sent them in, in advance and he/she ought to have had sight of them.

    And if it goes pear shaped - do not give up. You can ask for a Mandatory Reconsideration and if that fails, go on to Tribunal. There is a qualified man who can help you, at a price, who get about 95% cases through as he is Legally Trained.

    Email me about this: miriam_melody2000@yahoo.com.

    But if you don't go down that route, then get all the reports together and even try to get more and the latest reports and - start again. Second time round you will be more likely to win or to be able to state your case. Don't include anything that he doesn't do regularly, for example: he went to stay with a relative and you put him on a train and they met him off it - last year. DON'T mention this, -unless this happened and he had a melt down and or ran away or hurt someone. See what mean?

    All the best,


  • Thank you very much mirium for your reply.I will keep your contact info just incase.I am already Michael's appointee but he hasn't had a recent as an adult he was officially diagnosed 3/4 years ago but has always had extra support at school.I have a letter from school supported study dept and he has a learning support person in class at college too.I sent in letter from school but not from college. Michaels ssessment is in 2 weeks time.do you think I should get some sort of statement from college to about his support ?we have a gp appointment next week (suggested by college disability advisor) as since starting back after Xmas his anxiety levels are through good.constantly shaking feeling sick and looking weight through lack of apetite.I'm scared this asessment will be too much for him and he 'll shut down completely.

    thank you very much for all the information you gave.much appreciated.x

  • Yes, if you can get a letter from the College Disability Advisor. Say to this person that you need a short letter about Michael for an assessment on ....(date) stating that Michael needs to see his GP as since Christmas his anxiety is high, with constant shaking, feeling sick and loosing weight through lack of appetite. Say that you need to send this in ahead of the date (take a copy to have with you at the Assessment, in case they have not seen it beforehand),

    Ask the GP if he thinks that Michael would safely be able to meet the PIP assessor face-to-face? If not, ask for a note to say so and post it to them (keep a photocopy), and phone them to tell them the situation. Ask them, that as you are his Appointee, can you see them on behalf of Michael and you have sent them a note from the GP. You also need to write a list of the the things you do as his Carer: such as "I cook all his meals because Michael is unable to do this because of ...

    All the best,


  • Thank you very much .I'll get onto getting all this done this morning. X

  • Hi folks,

    just a quick update for you all.i got in touch with our local autism uk branch and a lovely lady came out for home visit .she talked me through everything even down to the lay out of the building! Which ment I could answer most of Michael's questions before going and this helped both of us feel a little less anxious.

    we had Michael s PIP assesment this morning. the assessor we seen was really nice and so was the receptionist.the centre as a whole was quiet calm and very friendly. The assessor told Michael straight away he didn't have to speak as she new it was something he struggled with and she was happy to chat with mum but at any time he could speak or ask to leave the room of it was too much.she explained clearly all the way through even including Michael although he didn't speak or make eye contact at all.I was really dredding this meeting but it was no where near as traumatic as I thought it was going to be. Michael coped really well too.☺ At the end she said we would hear in 4/6 weeks approx of the decision made but said she felt it would be a straight swap over from dla to PIP for Michael.I know it's not get decision but she did say he scored points in all areas going on just her report.

    All that's left now is to wait for decision.although I'm unsure of final outcome I am relieved this part is over and i can take a breath before having to go into battle for the next thing Michael needs.

    I will let you know the final decision wen we get it .Thank you everyone for your support and all the information you have given too.xx

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