Hi everyone,
I'm 41 and was diagnosed with Asperger's syndrome (autism) and dyslexia during childhood, back in the 1990s.
I've managed to build a reasonably independent life. I work full-time in IT, own my home, drive and live alone. However, despite appearing relatively functional from the outside, I've always struggled with certain aspects of everyday life, particularly executive functioning, social interactions, processing information and looking after myself.
Earlier this year, I applied for PIP for the first time. I provided historical educational and medical evidence, including records from my childhood documenting my difficulties and the support I needed at school.
I had a telephone assessment in September, lasting around 70 minutes, and was subsequently awarded 0 points across every single activity.
I'll admit, that was quite upsetting, especially as I felt I'd explained my difficulties reasonably well.
Some examples of the things I struggle with:
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Washing and personal hygiene: I can physically shower, but initiating it is extremely difficult. I can sometimes go two or three weeks without showering, particularly when I'm working from home and have no external commitments.
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Preparing food: I rely heavily on repetitive, easy-to-prepare meals because planning and cooking from scratch can feel overwhelming. I've also had a couple of cooking-related burns, one requiring hospital treatment.
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Eating regularly: I can become so absorbed in work or other activities that I struggle to stop and eat, even when I'm hungry. Sometimes I end up going to bed without an evening meal.
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Social interaction: I can manage familiar, structured situations, but unexpected conversations and unfamiliar social situations cause considerable anxiety. I often withdraw, struggle to respond or need reassurance beforehand.
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Reading and communication: I struggle to process lengthy written or spoken information and regularly rely on recordings, transcripts, AI tools and explanations from other people.
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Dressing: When I have no external commitments, I can struggle to initiate changing clothes, sometimes wearing the same things for several days.
The assessment report seemed to place considerable emphasis on the fact that I work, drive, attend the gym and live independently.
I don't dispute any of those things, but I feel that the assessor focused on what I'm physically capable of doing rather than the difficulties I experience actually initiating and managing everyday activities.
I've already requested a Mandatory Reconsideration and have spent quite a bit of time preparing a detailed response, which I'm hoping to submit later this week.
I'm not expecting anyone here to tell me I'm definitely entitled to PIP. I'm genuinely interested in hearing from other autistic adults, particularly those who work or live independently.
I'd really appreciate hearing:
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Has anyone else received zero points despite providing evidence of an autism diagnosis and everyday difficulties?
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Did you have better luck at Mandatory Reconsideration or tribunal?
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Did you feel that being employed or living independently worked against you?
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Are there particular aspects of my situation that you think are worth emphasising, or areas where my expectations might be unrealistic?
I'm trying to approach this realistically and would welcome constructive criticism as much as encouragement.
Thanks for reading, and apologies for the long post!
