ESA50

I have Asperger syndrome, a both complex, i.e. composed of many parts, and paradoxical condition, e.g. "Excellent rote or photographic to semi-photographic memory" but "Difficulty in remembering where items used moments before are located".

According to the Equality Act 2010's definition, it is a disability, i.e. (a) P has a physical or mental impairment (see section 7 of CDLA 1678/97 and Sections 8, 9 and 10 of CDLA/2288/2007, and (b) the impairment has a substantial and long-term adverse effect on P's ability to carry out normal day-to-day activities (section C of the DSM-IV's diagnostic criteria for Asperger syndrome states: The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning) and yet I continue to be asked, "Do you think you are disabled?"

The DWP's Disability Handbook's chapter on Autism and Asperger's Syndrome is woefully inadequate because it fails to describe fully the impairments and impacts thereof and furthermore, refers only to children.

Despite my psychiatrist's requests for a social worker and a community support worker, a Social Services head-of-department, refused on the grounds that people with Asperger syndrome are high functioning and therefore require no support. His uninformed comment flies in the face of, for example, Judith Barnard et al.'s Ignored or Ineligible, a 2001 House of Commons Debate on Asperger Syndrome, a 2003 House of Commons Debate on Asperger Syndrome, the National Autistic Society's I Exist campaign and the National Autistic Society's guide to Social Care.

On Tuesday the 17th of May I received the new ESA50 form: I am to be reassessed for Employment and Support Allowance. Despite having, and attempting to use, a copy of that which I included in the form which I completed in the October of 2009 - it took me 61 1/2 hours - I have, thus far, spent 37 1/2 hours on the new form because of executive dysfunction, e.g. Executive Function Challenges: without a simple 'if/then', 'yes/no', i.e. 'closed question' system or a pre-prepared script, I find communicating via any means all but impossible but because of ignorance among HCPs, Social Services, et al, I feel defeated before I begin. During 2009, a former support worker telephoned JCP to request an ESA50 in a form accessible to people with autism spectrum conditions (ASC) but was advised to complete said form on my behalf but surely that flies in the face of the psycho-social model of disability; if JCP cannot accommodate people's disabilities and the impacts thereof, how can the government expect employers to make "reasonable adjustments"?

In an attempt to assist my completing the new ESA50, I have downloaded and read both The Employment and Support Allowance (Limited Capability for Work and Limited Capability for Work-Related Activity) (Amendment) Regulations 2011 and theRevised WCA Handbook ESA (LCW/LCWRA)Amendment Regulations 2011 but so doing has only served to make it more difficult, for example, page 80, section 3.6 and paragraph 4 of the Revised WCA Handbook ESA (LCW/LCWRA)Amendment Regulations 2011states:

Occasionally people whose principle diagnosis is Panic Disorder claim that they have difficulty making themselves understood during an episode of acute anxiety. Similarly those with severe Chronic Fatigue Syndrome may claim that speech becomes unclear when they are tired. Consider carefully whether such claimants should be assessed under the Mental Function Assessment. You should consider their ability to make themselves understood most of the time by any means.

but work-related activity may cause someone with a Panic Disorder acute anxiety and someone with Chronic Fatigue Syndrome extreme fatigue so either those responsible for the content of the Revised WCA Handbook ESA (LCW/LCWRA)Amendment Regulations 2011 lack the intelligence to make such a connection or they have another agenda.

As I have written, I have immense difficulty constructing novel sentences but in light (or the dark) of the above, how do I communicate the fact to ATOS HEALTHCARE in a way that an assessor will be able to both understand and accept? I have already prepared my father, mother and support workers for what I consider my only option should I fail to convince ATOS HEALTHCARE/DWP/JCP of the severity of my condition but even were I to succeed, the new Personal Independence Payment hangs above my head like the Sword of Damocles.

This response has taken me precisely 4 hours and 31 minutes to compose and I must continue working towards completeing the new ESA50 form.

Ignorance and Unrealistic Expectations

Yet another failure on the part of the charity which provides my support, or more recently, lack thereof, resulted in my letting the person (not my usual support-worker) who arrived half an hour later than expected know exactly what I thought of the fact that despite repeated requests to those in charge of the local branch of what is a national charity to inform me, in advance, of any changes, they had consistently failed so to do, despite my advocate's explaining that, as a person with Asperger syndrome, even small changes to my routine and/or what I am expecting to take place, causes severe anxiety which can, and this is documented in my care-plan, lead to, at best, 'shutdowns' or, at worst, 'meltdowns', the former characterised by complete withdrawal and the latter by an inability to control the consequences of fear, frustration and/or anger; it so happens that, despite my extreme frustration with the aforementioned charity's failure to accommodate my needs with a frequency of about one in every three visits, I managed to restrict my rant to the facts but using some choice and colourful adjectives.

The deputy, if you'll allow, support-worker did nothing to ameliorate my extreme state of 'fight or flight' but rather compounded it by making excuses, indeed, her abject ignorance of the impacts of my condition continued to manifest itself during the time alotted, e.g. I am hypersensitive to light and wear Orthoscopics tinted spectacles all the time, yet she seemed to feel it necessary to comment upon my keeping my curtains closed. She also fell foul of a trap, into which many an, at best, inexperienced, and at worst, ignorant health-care professional/social-worker/support-worker falls, to wit, that because I have an high verbal I.Q. - please note that there is a world of difference between an high verbal I.Q. and an ability to communicate: up to 90% of communication is non-verbal and an impairment in the latter is one of a triad which form the core or heart of a diagnosis of both Kanner's, or classic, autism and Asperger syndrome - there is nothing of which I am incapable, a mistake which leads to my being anxious, feeling frustrated and, more often than not, a failure and which, in turn, leads to the aforementioned 'shutdowns' or 'meltdowns'.