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asperger's syndrome information and features

         

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Your Rights, Your Needs
Transport
Play and Leisure
Housing & Independent Living
Claiming Welfare
Benefits
Your Rights, Your Needs

The Disability Discrimination Act 1995 (DDA) came into law in the UK on 1st October 2004. The DDA abolished the idea of being ‘registered disabled’ and created a new definition.  According to the Act, a person has a disability if they have:

 “a physical or mental impairment which has a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities”

Not all adults with Asperger syndrome are in full-time paid employment (studies by the National Autistic Society in the UK suggest only 12% are). The reasons vary from inability to cope with the work environment to simply not being able to find or keep work due to lack of people skills. In addition, access to other areas of life can be restricted, and people with Asperger syndrome can end up isolated and cut off from the community, unable to participate in the full range of activities they would like to.

Claiming benefits, assistance. or access to special facilities is not always easy because the system is only designed to meet the needs of the physically, mentally, or sensory disabled. Social / developmental disability is less easy to define and not adequately recognised. Proving disability or inability is not easy, and many services are allocated only on the basis of impaired mobility or intellectual ability.

As far as I can understand from what I have read, the government hope to deal with this situation, not by making benefits easier to access for people with Asperger syndrome and similar conditions, but by getting us into work. In some ways that is a positive thing, because we are mentally and physically capable people who have a lot to offer, and some sort of vocation or career is a good thing for a person to have. We should support ourselves if we can. Unfortunately, unless the reasons why some of us find work difficult or impossible are actually addressed, just physically putting us into jobs achieves very little in the long term, and does nothing to address poor quality of life.

In the mean time the procedure for claiming benefits... completing forms and being interviewed etc. can be an obstacle in itself, but you can ask for assistance with these things if you need it... and if you are lucky you might even get some.

The main route to accessing social services in the UK is through having a community care assessment. Local authorities are expected to identify people with disabilities who may have specific rights to services, however you may need to request one if this doesn't happen.

Some of the information that follows is drawn from two reports published by the National Autistic Society in the UK, Autism : Rights in Reality (2003) and Ignored or Ineligible? (2001).

Transport

Things other people take for granted can leave you trapped at home or at the very least discouraged from travelling. When it comes to public transport, it could be things like the sensory nightmare that can be using a station or port, having to be pressed up close against a stranger on a seat, having to make polite conversation with a stranger who sits next to you and insists on chatting, having the confidence and ability to ask for assistance if lost or confused, abuse or misunderstanding from the general public and/or the service providers themselves, and coping when sudden changes are made to your plans such as a train being cancelled or a bus being missed.

Present commitments to make public transport accessible for people with disabilities are very limited.

The Rail Vehicle Accessibility Regulations 1998

The Public Service Vehicles Accessibility (Amendment) Regulations 2003

Code of Practice on Access and Mobility

The Disabled Persons Transport Advisory Committee's (DPTAC) defines accessibility as "We believe that the concept of accessibility goes far wider than improving access to a range of jobs, services and facilities. It should include ensuring that everyone has the opportunity to use the full range of transport services, buildings and opens spaces that make up the places in which we live. 'Accessibility' is a term that is interpreted differently by different audiences depending on their interests and backgrounds. The term is used in a variety of different contexts. Accessibility in its widest sense may mean people can get to the building but takes limited account of the difficulties they experience in doing so. "Accessibility" does not just mean "easy to reach". It also means "easy to use". In developing our advice we seek to ensure that disabled people have access to the same range of services and facilities as non-disabled people, at no additional cost".

They also define inclusive environments... "Inclusive environments are those that can be used by everyone, regardless of age, gender, ethnicity or disability. This makes them truly functional, efficient and sustainable. If the build quality is also high, then these developments meet the principals of good design described above. Inclusive environments are made up of many elements such as the attitudes of individuals and society, the design of products, communications, as well as the design of the built environment itself. Inclusive environments recognise and accommodate differences in the way people use the built environment and provide solutions that enable all of us to participate in mainstream activities equally, independently, with choice and with dignity. An inclusive environment does not attempt to meet every single need, but considers people's diversity and breaks down unnecessary barriers and exclusions in a manner that benefits us all. This is significant because although society and individuals have invested heavily in enabling people to manage their personal circumstances effectively (e.g. by providing aids and adaptations for disabled people), many people remain unnecessarily 'disabled' by ill-conceived environments. As a result many people are made unnecessarily dependent on others and are unable to take full responsibility for themselves".

While some of the problems faced by people on the autistic spectrum are a question of changing public attitudes, there are things that could be done to improve both the physical environment and usability of transport services.

For example, waiting areas, like many public spaces, are big open halls, harshly and brightly lit, and echoing with the noise of hundreds of voices and engines. The provision of smaller, quiet areas, cut off from the noise and flow of people, that can also serve as information points, as well as places to rest and wait, would help reduce stress, not just for autistic people, but for the elderly, people with young children, and people with other disabilities. Some trains already have 'quiet' carriages where music and mobile phones are not allowed, and provision of these sorts of choices should be encouraged and maintained.

Written information such as signs, leaflets, timetables and guides should always be available and/or in good up to date condition, and it should not be assumed or taken for granted that 'what to do' or 'where to go' is obvious. Information should always be provided by more than one method, for example a verbal announcement should also appear prominently in writing on a screen, and written instructions should always be accompanied by visual guides or illustrations. Some places already do this because it makes things easier for everybody, not just people with special needs, but it is seen as luxury rather than necessity in many cases and is unreliable and inconsistent.

While some people experience no anxiety or difficulty in unfamiliar circumstances, many do, and while most people learn by observing others and picking up on the unwritten rules, some of us lack the opportunities, experiences and even ability to do so. Staff should be trained to understand that they serve a public with a wide variety of needs and abilities, and it is not their place to judge, ridicule, or humiliate people who need help they don't think should be necessary.

Where such accommodations would not be enough there are other options which can be explored such as taxi services or dial for a ride schemes, that can at least make local travel a more convenient and less stressful experience for people who might otherwise not be able to get out.

If you are a driver or if you have someone who drives you, then you may encounter problems when it comes to the eligibility criteria for some services, for example, the disabled parking badge. While many people on the autistic spectrum are unlikely to require such a facility, there are cases severe enough to require it, but that are not currently included in the automatic eligibility criteria, which are if you...

  • are receiving the higher rate of the Mobility Component of the Disability Living Allowance
  • are receiving a War Pensioner’s Mobility Supplement
  • use a motor vehicle supplied by a government health department
  • are a registered blind person
  • have severe disability in both upper limbs, drive a motor vehicle regularly but cannot turn the steering wheel by hand even if that wheel is fitted with a turning knob
  • have a permanent and substantial disability which causes inability to walk or very considerable difficulty in walking

In their report Autism : Rights in Reality (2003) the National Autistic Society reports that 92% of respondents were aware of disabled parking badges where as only 36% had applied for them. Perhaps surprisingly though, 60% of cases with high functioning autism that had applied for a badge had actually been successful, so if this is something you have good reason to think you need then don't be ashamed to ask.

Play and Leisure

While some people are content to stay at home and not mix with other people, there are those who simply do not have a choice.

The most pressing need is for an increase in availability of autism specific services, such as...

  • Play schemes and social / recreation groups for children

  • Social groups for adults

  • Befriending schemes

Such services do already exist in some areas, but even then there are other issues such as awareness of their availability and their suitability for the diverse range of people on the autistic spectrum. Women and people of higher ability are often underrepresented in social groups despite being just as much in need of support in this area of their lives as anyone else.

Mainstream services also need to accommodate people on the autistic spectrum to a greater degree. Access to sport and leisure facilities, outdoor activities, religious organisations, clubs and special interest groups etc. is currently limited to those who have the confidence and ability both to organise these things and interact with people without fear of being misunderstood or disliked. This is about more than fairness or having fun, it is about the mental and physical health of people for whom it is all too easy to hide away indoors and be forgotten and ignored by the local community.

Housing & Independent Living

According to NAS report  Ignored or Ineligible? (2001) only 3% of people with Asperger syndrome live fully independently, and 59% still live at home with parents.

Often the uneven level of abilities of people on the autistic spectrum leads to people having unrealistic expectations of what they are capable of. Some of the things suggested people might need some help with include...

  • Planning and preparing a meal

  • Housework

  • Paying Bills

  • Managing Money

  • Shopping

  • Laundry

  • Dealing with Letters

  • Personals Care

In addition, other concerns could also be the risk of isolation... getting stuck indoors with no friends to meet or have visit and nowhere to go, and also possibly be vulnerable to abuse or exploitation.

Everybody has different needs and abilities. Often you might not know what they are until you put yourself in a situation where you can find out. I would never have imagined I would have problems living on my own. I assumed if other people could do it then I could too, but I have been surprised by some of the things I have struggled with. For example, living in rented accommodation I was shocked by the degree of unbearable anxiety I could be caused just by routine things such as people letting themselves in to do maintenance while I was out at work... strangers touching and moving my stuff. I also get very distracted and have a poor sense of time, which leads to lots of bills being paid late or missed. It is often hard to explain why you have such difficulties if you are otherwise intelligent and articulate. I can't even manage to keep a diary or calendar to help me because I forget to complete it with the information in the first place or forget to look at it even when I do.

So, what are the alternatives to renting or buying on your own...

  • Living with family (parents, spouse, sibling etc.)

  • Supported Tenancies.

  • Sheltered Housing.

  • Clustered Flats.

  • Residential Care Placements.

Where some of these options are available they are still often extremely limited.

Another alternative would be to have someone who does home visits to check everything is OK, to help around the home, give advice, help with completing forms and paying bills etc. I have not been able to determine whether anywhere offers such a service to autistic adults attempting to live independently though as yet.

Claiming Welfare

The main benefit that is available for disabled people in the UK is Disability Living Allowance (DLA). It is divided into two parts, care, which is awarded at a lower, medium and higher rate, and mobility, which is awarded at a just a lower and higher rate. This benefit is intended to meet the additional costs a household faces because of a disability.

Other benefits which may be applicable include housing benefit, disabled person's tax credit, job seekers allowance, income support, incapacity benefit, and invalid care allowance.

People on the autistic spectrum face a variety of problems when attempting to claim such benefits because the system was set up at a time when autism was not well understood and it has not yet been adequately reformed to address this. The forms that need to be completed do not always ask questions relevant to people's circumstances and difficulties, the system is hard to understand, the process can be long and stressful, and the people making the decisions do not always have a good understanding of the requirements of people with autistic spectrum disorders. Hopefully reforms will eventually be made to improve this situation.

Not everybody on the autistic spectrum needs or wants to claim benefits. There are many people who work or support themselves. There is however a wide range of needs and abilities and people's situations should be assessed individually. To the minority of people who have expressed the concern that some people might exploit the diagnosis of Asperger syndrome to sponge off the state I can only say that first, they do thoroughly investigate your level of ability before giving you any money, so they really shouldn't be concerned about that, and second, I am yet to meet anyone claiming disability benefit who wouldn't rather be able to lead a full life and support themselves if they could.

Benefits

If you need help finding work or financial support if you can't work the following telephone numbers could be useful:

Benefit Enquiry Line for disabled persons and their carers and representatives 0800 882 200 - Monday to Friday 8:30am - 6:30pm. Saturday 9:30am - 12:30pm

Northern Ireland Benefit Enquiry Line 0800 220 674

DPTC Helpline 0845 605 5858 or Textphone (for hard of hearing) 0845 608 8844

Northern Ireland Helpline 0845 609 7000 or Textphone (for hard of hearing) 0845 607 6078 - 7:30am to 6:30pm Monday to Friday

New Deal
Job Centre +
Disability Alliance
NAS Advice on Benefits
Citizens Advice
Inland Revenue
Online DPTC Calculator
DPTC Information from the Inland Revenue
Free Guides to Claiming DLA
Department for Work & Pensions
Benefits Now
Guide to Claiming DLA
Disabled Persons Railcard
Tripscope
Community Transport Association

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