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Pip drastically cut as Autistic daughter is now at UNI.
- Earlbrutus
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1 day 1 hour ago #314141 by Earlbrutus
Pip drastically cut as Autistic daughter is now at UNI. was created by Earlbrutus
History: My daughter (now 21) was awarded PIP at 16 after many years undiagnosed as Autistic and ADHA and severe mental health issues. She suffered a year long breakdown at 15 prior to her diagnosis and could not leave her room due to Social Anxiety, her school refused to provide her with home schooling (and did not recognise her typical female 'masking' coping mechanisms), during the year leading up to her GCSE's as she had no 'formal diagnosis'. CAHMS (we live in Brighton) were very unhelpful, again her 'issues; were down to 'that funny age girls go through'. It's now 2026, and, after having to seek a private Autism diagnosis with a specialist so my daughter could sit her GCSE's (by chance it was with Dr Siggers, who is one of the leading Paeditraican diagnose specialist for girls with ASD and ADHD) , the school then allowed her to take her exams in her room online with strict suppervised control.
This is in the past, now my daughter after a long break from education and the death of her father 3 years ago has put her brilliant mind and creativity to persue a degree at University. She does this with utmost support from me, her brother, her boyfriend and my partner.
This post is about my recent PIP Review with DWP ( I have always advocated for her as she cannot cope with speaking to strangers and understanding the nuances that the PIP questions pose). I have many issues in regards to the Review, one , I requested an assesor trained in Neurodiverse dissabilities, but was told by the company who are now contracted out Circa? that they do not have any, two the assesor was a Physiotherapist ( in my mind no relevence and clear no understanding Autism), 3, I asked for the transcript of the conversation and most of the important issues my daughter struggles with in daily activities ( making a simple meal, she will often not eat the whole day due to overwhelm or drink water as she is hyper-focused on her studies, I and her boyfriend visit her weekly to prepare meals she can put in the microwave as she will retun with complete sensory overload from UNI and have to lie in the dark on her bed). Many., many things which I see in the deciding notes were overlooked. The over-riding quote on all of the questions: She sat her GCSE's and is at UNI which shows cognitive function.
I have just written supporting notes for my Mandatory Reconsideration for every PIP question and repeated what I told the assessor, and highlighted how I had explained thoroughly (1.20minute) why she cannot do these tasks.
There were many spelling errors in the ‘Justification for descriptor choice’ , and almost ablanket approach that because she sat GCSE's as at UNI she shows cognitive function and 'should be able to do these things'.
I am outrgaed that it is clear that the person making the decision is not only unfamiliar with the challenges of Autism, has not read my explainations , or even the Assesors,, rushed the decision to cut her Daily Living PIP element and whacked out a conclusion which has totally failed to consider the mental health 'fall-out' of ASD masking and all with terrible spelling mistakes.
I have compiled a lengthy 'evidence' supporting notes letter challenging 75% of the Questions, I am concerned these will be read by someone who has no experience with ASD.
I'm reaching out for any support or advice from others who may have experienced this. I am 100% ready to take this further but upset and and outraged that even with more awareness surrounding Autism the people who are there to help now seem to be challenging a dissabilty which individuals are born with, alomst as if it can be 'cured' because an individual is intelligent and shows 'cognitive thought' -no mention of how this has a negative, exhausting overwhelming affect. . There are many other issues which I have not writen here as my message is pretty long, apologies but I would be hapy to share any information.
If anyone could suggest how I should now proceed or share a similar story I would really appreciate it. I am angry, sad that her ASD has almost been 'glossed over' and I am scared for my daughters future when I am not around to asssist her be the incredible young woman she is.
Jody
This is in the past, now my daughter after a long break from education and the death of her father 3 years ago has put her brilliant mind and creativity to persue a degree at University. She does this with utmost support from me, her brother, her boyfriend and my partner.
This post is about my recent PIP Review with DWP ( I have always advocated for her as she cannot cope with speaking to strangers and understanding the nuances that the PIP questions pose). I have many issues in regards to the Review, one , I requested an assesor trained in Neurodiverse dissabilities, but was told by the company who are now contracted out Circa? that they do not have any, two the assesor was a Physiotherapist ( in my mind no relevence and clear no understanding Autism), 3, I asked for the transcript of the conversation and most of the important issues my daughter struggles with in daily activities ( making a simple meal, she will often not eat the whole day due to overwhelm or drink water as she is hyper-focused on her studies, I and her boyfriend visit her weekly to prepare meals she can put in the microwave as she will retun with complete sensory overload from UNI and have to lie in the dark on her bed). Many., many things which I see in the deciding notes were overlooked. The over-riding quote on all of the questions: She sat her GCSE's and is at UNI which shows cognitive function.
I have just written supporting notes for my Mandatory Reconsideration for every PIP question and repeated what I told the assessor, and highlighted how I had explained thoroughly (1.20minute) why she cannot do these tasks.
There were many spelling errors in the ‘Justification for descriptor choice’ , and almost ablanket approach that because she sat GCSE's as at UNI she shows cognitive function and 'should be able to do these things'.
I am outrgaed that it is clear that the person making the decision is not only unfamiliar with the challenges of Autism, has not read my explainations , or even the Assesors,, rushed the decision to cut her Daily Living PIP element and whacked out a conclusion which has totally failed to consider the mental health 'fall-out' of ASD masking and all with terrible spelling mistakes.
I have compiled a lengthy 'evidence' supporting notes letter challenging 75% of the Questions, I am concerned these will be read by someone who has no experience with ASD.
I'm reaching out for any support or advice from others who may have experienced this. I am 100% ready to take this further but upset and and outraged that even with more awareness surrounding Autism the people who are there to help now seem to be challenging a dissabilty which individuals are born with, alomst as if it can be 'cured' because an individual is intelligent and shows 'cognitive thought' -no mention of how this has a negative, exhausting overwhelming affect. . There are many other issues which I have not writen here as my message is pretty long, apologies but I would be hapy to share any information.
If anyone could suggest how I should now proceed or share a similar story I would really appreciate it. I am angry, sad that her ASD has almost been 'glossed over' and I am scared for my daughters future when I am not around to asssist her be the incredible young woman she is.
Jody
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- LL26
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1 hour 14 minutes ago #314160 by LL26
Nothing on this board constitutes legal advice - always consult a professional about specific problems
Replied by LL26 on topic Pip drastically cut as Autistic daughter is now at UNI.
Hi Earlbrutus,
Unfortunately there are many instances where autism is overlooked or misunderstood. (Or 'cured'.) I have personally helped a number of people with autism to achieve PIP, or to appeal when enhanced rate reduces to zero.
The approach to MR that I adopt is a 3 part formula. Firstly write a few paragraphs about health, how autism affects your daughter, when this was diagnosed and how. I often Google a relevant charitable organisation, eg National Autistic Society. These sorts of websites often have a definition of the disability and its effects. You might wish to quote (providing the website name) eg according to NA Society autism is diagnosed when any of the following 6 symptoms occur.My daughter has all 6. ) You can briefly explain health problems and help your daughter thus needs.
Next criticise the report. Now I appreciate it is often very apparent that there are numerous errors on the assessment report. However rather than write a 30 page essay identifying each and every fault (which certainly won't be read by DWP!) try and combine the errors into 4 or 5 bullet points and provide examples. This is a much more powerful way to deal with this.
Here's some suggestions...
• the assessor has either misunderstood or misrecorded what I have said - for example the report says my daughter travels to the supermarket every day by bus. However my daughter never goes to the supermarket nor goes on a bus. The last time she went in a bus was 5 years ago. She didn't know where to get off, and was left on the bus at the end of the journey. The driver tried to help, but my daughter couldn't make herself understood, and she became highly anxious and panicked. Luckily daughter has a card with my phone number and the driver kindly rang me....* See comment below
Or
• The report shows a clear lack of understanding about autism, inappropriate questions were asked. The assessor is listed as a physiotherapist. There are no specific qualifications in mental health issues or for autism. The errors in the report seem to arise due to a lack of knowledge for m the assessor.
Or
•We were asked the same questions repeatedly and we always gave the same answer. However the report shows a different answer eg we do X, when we said we never do X. The report is full of basic spelling errors and punctuation errors and in some parts makes no sense. This lack of attention to detail confirms that the assessor clearly was not listening or recording properly.
Just ideas which you can of course amend or tweak.
You can also say that DWP have clearly relied upon a very poor report, which they should not have done, and have ignored other evidence eg medical or school evidence etc.
The third part is to go through the descriptors and here you can do a more detailed criticism of the report.
Eg Katy does not cook. On numerous occasions I have tried to explain how to cook things, but she can not follow instructions ....etc. The assessor incorrectly states that Katy cooks every evening. It is not known where this information has come from. At three places on the claim form Katy said she doesn't and can not cook, this was also repeated several times during the assessment.
*If you have a recording of the assessment and or transcript you can quote directly from this. Again no need to quote everything thing, but include a few references. Eg
At 4 min 21 - Katy is asked about cooking she says 'No I don't.'
And again at 6 min 13. ' Cooking is too difficult I cut myself, I burn...'
Also at 8 min04 ' No, I don't cook, it's too dangerous, and I can't manage it.'
There are 6 other occasions where cooking is mentioned by the assessor and either there is no answer given, or Katy or myself say Katy can't cook because it is too much of a safety risk or takes too long. This has all been ignored by the assessor who says at page 6 para 3 ' Claimant cooks insides every evening' and scores zero points.
Write about each descriptor in a similar way. Remember that even if genuinely there is no points on an activity still mention this if there are problems for complete picture. Eg 'Dressing - my daughter can normally manage this each day, but on one or two days a week has difficulties because ..'
If you wish, send a copy of the transcript if you have one -simply a word for word script of what happened, ie like as a theatre play. It could include eg daughter became tearful, or assessor overtalks, 30 second pause, or indistinct word. But no conjecture, only the detail absolutely needed to recreate the 'play script'.
It is entirely possible to get zero points in assessment and then enhanced rate of both mobility and daily living upon appeal. It unfortunately happens all too often.
I hope this helps.
LL26
Unfortunately there are many instances where autism is overlooked or misunderstood. (Or 'cured'.) I have personally helped a number of people with autism to achieve PIP, or to appeal when enhanced rate reduces to zero.
The approach to MR that I adopt is a 3 part formula. Firstly write a few paragraphs about health, how autism affects your daughter, when this was diagnosed and how. I often Google a relevant charitable organisation, eg National Autistic Society. These sorts of websites often have a definition of the disability and its effects. You might wish to quote (providing the website name) eg according to NA Society autism is diagnosed when any of the following 6 symptoms occur.My daughter has all 6. ) You can briefly explain health problems and help your daughter thus needs.
Next criticise the report. Now I appreciate it is often very apparent that there are numerous errors on the assessment report. However rather than write a 30 page essay identifying each and every fault (which certainly won't be read by DWP!) try and combine the errors into 4 or 5 bullet points and provide examples. This is a much more powerful way to deal with this.
Here's some suggestions...
• the assessor has either misunderstood or misrecorded what I have said - for example the report says my daughter travels to the supermarket every day by bus. However my daughter never goes to the supermarket nor goes on a bus. The last time she went in a bus was 5 years ago. She didn't know where to get off, and was left on the bus at the end of the journey. The driver tried to help, but my daughter couldn't make herself understood, and she became highly anxious and panicked. Luckily daughter has a card with my phone number and the driver kindly rang me....* See comment below
Or
• The report shows a clear lack of understanding about autism, inappropriate questions were asked. The assessor is listed as a physiotherapist. There are no specific qualifications in mental health issues or for autism. The errors in the report seem to arise due to a lack of knowledge for m the assessor.
Or
•We were asked the same questions repeatedly and we always gave the same answer. However the report shows a different answer eg we do X, when we said we never do X. The report is full of basic spelling errors and punctuation errors and in some parts makes no sense. This lack of attention to detail confirms that the assessor clearly was not listening or recording properly.
Just ideas which you can of course amend or tweak.
You can also say that DWP have clearly relied upon a very poor report, which they should not have done, and have ignored other evidence eg medical or school evidence etc.
The third part is to go through the descriptors and here you can do a more detailed criticism of the report.
Eg Katy does not cook. On numerous occasions I have tried to explain how to cook things, but she can not follow instructions ....etc. The assessor incorrectly states that Katy cooks every evening. It is not known where this information has come from. At three places on the claim form Katy said she doesn't and can not cook, this was also repeated several times during the assessment.
*If you have a recording of the assessment and or transcript you can quote directly from this. Again no need to quote everything thing, but include a few references. Eg
At 4 min 21 - Katy is asked about cooking she says 'No I don't.'
And again at 6 min 13. ' Cooking is too difficult I cut myself, I burn...'
Also at 8 min04 ' No, I don't cook, it's too dangerous, and I can't manage it.'
There are 6 other occasions where cooking is mentioned by the assessor and either there is no answer given, or Katy or myself say Katy can't cook because it is too much of a safety risk or takes too long. This has all been ignored by the assessor who says at page 6 para 3 ' Claimant cooks insides every evening' and scores zero points.
Write about each descriptor in a similar way. Remember that even if genuinely there is no points on an activity still mention this if there are problems for complete picture. Eg 'Dressing - my daughter can normally manage this each day, but on one or two days a week has difficulties because ..'
If you wish, send a copy of the transcript if you have one -simply a word for word script of what happened, ie like as a theatre play. It could include eg daughter became tearful, or assessor overtalks, 30 second pause, or indistinct word. But no conjecture, only the detail absolutely needed to recreate the 'play script'.
It is entirely possible to get zero points in assessment and then enhanced rate of both mobility and daily living upon appeal. It unfortunately happens all too often.
I hope this helps.
LL26
Nothing on this board constitutes legal advice - always consult a professional about specific problems
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