Published on 12, July, 2020
Hi,
I am new to the forum as my daughter was only diagnosed with Austistic Spectrum Disorder last summer, after a year and a half of assessments. We applied for PIP last April (I am her appointee) and have just been sent a letter saying she will not receive it, despite never going out alone and not being able to cope with communication with people other than her immediate family, and that is limited. She scored 4 points for 'engaging with other people face to face' and 4 points for 'planning and following journeys'. Zero points for everything else, despite a face to face assessment where I explained that she goes out on average once a week, sometimes less, and is always accompanied. She has lots of sensitivities, particularly with food.
Has anyone else experienced this? I am preparing an appeal. It says on the covering letter ' I realise you have a disability or health condition and receiving this decision isn't the news you were hoping for'. It's a joke.
I doubt if this will be resolved until health professional and other authorities including NAS stop using the diagnostic Triad of Impairments to define everyday living.
It means ATOS and other assessors are guided by a strategy which deploys questions in different contexts to ascertain a difficulty supposedly common to people with autism. These questions are thought up to "trick" people into admitting they don't have an autism trait, assuming there are people feigning autism traits to avoid work. But whether or not you have a recognisable trait, extracted by such ridiculous means, misses the point.
A lot of problems living with autism are consequences of not having good social interchange. Social interchange allows non autistic people to qualify their perceptions and experiences by knowledge of what other people do.
People on the autistic spectrum don't get this social referencing so have to think through situations on their own. The difficulties aggravate ability to cope with the non-autistic world.
Until NAS and others research the problems of social referencing, we will never be able to help people on the spectrum properly.
The Triad of Impairments is designed so that psychologists can distinguish autism from other conditions. That is not the same as explaining everyday living on the spectrum.
I keep trying to fight this. It is an uphill struggle. NAS never listens.