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catrainor

ASD and "Gainful employment"

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Can anyone help me with this one! I am 56 and although I knew myself for many years that I was on the spectrum I did not get my formal NHS diagnosis of ASD until a few weeks ago (after several years waiting for referrals etc)

 

Like many with ASD the condition has caused me to have a chequered work history but I was forced to give up work altogether in 2006 to become a full time carer for a family member who was very ill for and extended period. By 2009 I realised that for a combination of care committments (I also have two children with formal ASD diagnoses) regular full time work for an employer was a non starter both because of my caring committments and also because of the social communication and organisational problems I acknowledged my (then undiagnosed) ASD and I knew as a practical option the best thing was to turn my hobby (making old fashioned "proddy' rugs) into a small microenterprise and go self employed.

 

Making rugs takes a lot of time anyway but I now realise with himdsight as a result of research I undertook after my diagnosis that I was not as on the ball as I perhaps should have been with the marketing/sales side and instead tended to sit at home working rugs to build up a considerable stock.

 

In light of this new realisation I am taking steps to obtain business advice in respect of marketing etc but I fear it may be too late.

 

I have just received a letter from my local council stating that they do not consider the efforts I have made over the last number of years as being "gainful employment' under the regulations in force governing housing and council tax benefit and in light of this have now withdrawn these benefits thus in effect rendering myself and children homeless as I depend on these benefits to keep a roof over my head.

 

The timing of this is particularly difficult for me. I am still in the middle or the reassessment/self realisation process following the late diagnosis and I realise that my failure to market my goods is simply a common part of the difficulty those on the spectrum have in "blowing their own trumpet" I have 28 days to come up with a challenge to the council's decision which is not nearly long enough as I will need to find someone who can advise on the legal aspects of housing law but also be sufficiently autism aware to understand that although I do intend to make a go of my self employment I needed the formal disgnosis to give me the power to ask for and seek help with those aspect of ASD that cause difficulties in actually making money out of my efforts! Does anyone out there have any suggestions!

 

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I'm fortunate that I own my house and have some savings, so I don't have your concerns, but I am worried about Working Tax Credit, as I've been trying to get various businesses and projects off the ground for years, and not managed to earn any money for a long time. My slow discovery of possible Aspergers, and now being stuck on the waiting list for an assessment, means that everything is up in the air at the moment. I know about business (I'm an accountant), and marketing, but as I've got older, my people and communication skills are deteriorating. I also realise that I've always had a problem with Executive Function, that has held me back. My people and organisational skills used to be adequate to earn a modest but reasonable living, but they're not at the moment.

 

I can work out all sorts of plans for dealing with the problem, but when it comes to the part where I need to deal with other people, everything falls into a big black hole. At the moment I'm avoiding people, as talking to anyone who doesn't understand ASD is a waste of time and energy, but I don't know how to find, or get access to, people who could help who do understand. I'm hoping I'll get a diagnosis in a couple of months, so at least I'll have a bit of paper to show that if I have an apparently mad idea, or say that I can't do something that most people can do, I've got some evidence to back me up. I'm not sure it will give me access to any practical support, but I'm hoping there may be something.

 

I don't know how people cope with the that officialdom throws at people who are struggling. I think it would send me straight into a meltdown, so I'm fortunate that I've managed to avoid it so far, but I'm concerned that as I get older I'm going to have to deal with some of it.

 

Sorry this isn't much help!

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Thanks for your input, negative as it may seem to you in fact you have been a great help in that it confirms that the social interaction and organisational problems I have been encountering are clearly ASD related as you seem to be having similar issues. Not sure where you are from but I have just send a long email to my local support organisation (Autism West Midlands) about the dearth of support networks for older adults with ASD and in particular those who are just in the process of getting or have recently received a diagnosis. Hang tight on getting that diagnosis, it took me six years of bagdering and the final wait to see a neuropsychiatrist took almost two years! For what it is worth many people in our position self-research the condition and in effect almost self diagnose. I took about 20 pages of notes to my GP and in particular the AQ test result and in effect made his referral unto specialists more or less inevitable. (I made sure I read the NAS notes to GPs first!)

 

MIght be worth moaning to your local authoritiy about their statutory obligations under the various Autism Acts.

 

In my email to Autism West Midlands I have asked them to consider setting up or supporting a group for older adults with late diagnosis.

 

I found this book worth its weight in gold and I got my copy from Amazon

 

Philip Wylie, VERY LATE DIAGNOSIS OF APSERGER SYNDROME (AUTISTIC SPECTRUM DISORDER) How Seeking a Diagnosis in Adulthood Can Change Your Life , Jessica Kinglsey Publishers 2014 ISBN 978 1 84905 433 1

 

The next bit is addressed to you as an accountant! Incidentally I use to work for the Inland Revenue and at that time (I was tax inspector doing investigation work) the working principle about whether a business was in fact a commerical one or not was based not just on it actually making a profit but on there being an expectation of profit at some time in the future and case law indicates that this time is not specified. I think my local authority's defintion of 'gainful employment' as an occupation that pays an income is incorrect, I suspect the correct interpretation is one that pays an income or provides the reasonable expectation of profit/income in the future. I think they are getting confused with those undertaking where it would never be able to make a profit (eg hobbies where large expenditure would always exceed income) as opposed to those of us sitting up for hours every night cutting up waste fabric for rugs! I think because an important feature of my product is that it is made of 100% recycled materials means that their is no expenses (and as yet no income!) caused them to fail to realise the hours I am putting in. As I already said without a support network in place my problem has been difficulty in understanding the importance of the marketing side of things

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