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For adults - do you think you have Asperger Syndrome?

RECOGNITION

Autistic spectrum disorders affect how people communicate with others and how people process the meaning of abstract information, in particular what other people think. It is only very recently that these disorders – atypical autism, high functioning autism, Asperger Syndrome, semantic pragmatic disorder – are being recognised for what they are: neurological disabilities that people are (usually) born with. Parents do not 'give' their children these disorders through their methods of child-rearing.

Unfortunately, before we began to understand these disabilities and the behaviours that often accompany them, a diagnosis of, for example, ‘emotional and behavioural difficulties’ may have been given to the young person. The family may have been told – although perhaps not in so many words – that it was ‘their fault’ and that they were bad parents. The young person may have found him or herself in a special school where stringent corrective measures were in place and the family may have been referred for parenting skills or counselling. Some children may have just been regarded as ‘eccentric’ or ‘odd’.

CHOOSING ASSESSMENT

If you are reading this information sheet, it is probably because you think you were one of the unlucky ones: you were mis-diagnosed or not diagnosed at all, but you believe that you may have Asperger Syndrome or High Functioning Autism (HFA). Have you read about autistic spectrum disorders? Do the problems mentioned in the articles sound familiar? Ask yourself: what if I find out that I have got Asperger Syndrome... or a communication disorder? Will it help me if I know the name of the disorder? What if I haven’t got autism or Asperger Syndrome? Only if you are happy with the answers you give yourself should you consider asking your doctor for a referral to a consultant psychologist for an assessment. The Winter 1998 issue of the National Autistic Society’s magazine Communication ran an article on adult diagnosis. You can order a copy of the article from the Information Department on 0207 903 3599. Each copy costs £2.00, + p&p.

You may want to consider further personal research and / or an assessment if any of the following sound familiar:

  • when a child you were often told off for being ‘naughty’, attention-seeking, or deliberately disruptive
  • you were always saying the wrong things at the wrong time
  • you had difficulties socialising - making and keeping friends – were you always the one left out?
  • you were often teased or bullied
  • you had trouble getting to the right place at the right time, with the right books or equipment
  • you were highly sensitive to loud noises, touch and smells, or
  • insensitive to pain (high pain threshold)
  • you found it difficult understanding other people’s jokes, innuendos and sarcasm
  • you made very literal language interpretations – i.e. misunderstood the meaning of language when used idiomatically? (“It was murder in town yesterday” “I could eat a horse”)
  • you had a very special interest, which you wanted to talk about constantly
  • you were a very anxious child, disliking any change or alteration to your daily routine, going to new places or meeting new people.

    If you now live independently, do you have problems with any of the following:

  • organising shopping, budgeting carefully, etc, so that you eat properly and regularly
  • remembering to launder your clothes and bedding often and regularly, and
  • remembering to bathe or shower daily
  • paying bills on time, and reading or completing other mail or forms
  • socialising with appropriate peer-groups
  • finding, making and keeping friends
  • knowing what other people are thinking, wanting you to do or say, expecting of you.

    WHERE CAN I BE ASSESSED?

    There are several specialist assessment centres around the country that see adults, and many (NHS) consultant psychiatrists will also be able to diagnose. You will need to be referred to most centres and consultants by your health professional. OAASIS or the National Autistic Society may be able to help you find a centre or consultant local to you.

    (Before seeking diagnosis or going to your doctor these two websites have information and diagnostic criteria that may be of assistance to you: www.asperger-syndrome.com and www.as-if.org.uk/adults.htm )

    The Centre for Social and Communication Disorders, Elliot House, 113 Masons Hill, Bromley, Kent BR2 9HT is the assessment centre for the National Autistic Society. They offer a full diagnosis, assessment and advice service. A referral will need to be made by a Psychiatrist.
    Web: www.nas.org.uk
    Tel: Helpline 0845 070 4004 or direct 020 8466 0098

  • CLASS (Cambridge Lifespan Asperger Syndrome Service), Douglas House, 18b Trumpington Road, Cambridge CB2 2AH. CLASS is an NHS clinic and accepts referrals nationwide from PCTs or GPs only, who have to agree to pay the fee. It is free for those living in Cambridgeshire.
    Tel: 01223 746048.
  • Dilemma Consultancy in Human Relations, 27 Brocco Bank, Sheffield. Dilemma is an organization of psychotherapists and counsellors working in the existential tradition. It offers an assessment, counselling and psychotherapy service for individuals and couples, they can do email counselling. Their website includes a self-assessment questionnaire – click the ASHTA (AS Help for Teenagers and Adults) link.
    Website http://dilemmas.org/asperger.htm
    Tel: 0114 266 0543.
  • Hoffmann Foundation for Autism, 4th Floor, Cumberland House, 80 Scrubbs Lane, London NW10 6RF. This organisation offers one-to-one counselling, life skills and social skills group, management of symptoms (stress, anxiety, depression) self-awareness, self worth and outreach.
    Website: www.hoffmannfoundation.org.uk .

    Tel: 0208 964 6650
  • The Maudsley Centre for Behavioural Disorders, Bethlem Royal Hospital, Beckenham, Kent BR3 3BX
    1. Behavioural Genetics Clinic for outpatients.
    2. Behavioural Disorders Unit: a secure environment for assessment, intensive treatment, specialising in AS, referral must come from a Consultant Psychiatrist.
    3. Mental Impairment, Evaluation and Treatment Service: an inpatient service, referral from Consultant Psychiatrist or Criminal Justice System.
    Tel: 0208 776 4183 or 4256
  • Milton Park a purpose built Asperger and autism hospital in Bedfordshire, which is part of Brookdale Care. Provides assessment and treatment for adults and young people aged 16 – 65, including those who have challenging behaviour, forensic history or need to be detained under the Mental Health Act 1983. Referrals accepted from parents, carers and professionals. Web: www.brookdalecare.co.uk Tel: 01707 646 646

    AFTER AN ASSESSMENT OF AN AUTISTIC SPECTRUM DISORDER… WHAT NEXT?

    While you were wondering whether you had an autistic spectrum disorder, you probably read quite a few articles on the subject. You are an expert on the disorder that the consultant has said you have: you understand the problems of people who have a form of autism – because you have lived with it all your life.

    Quite often, when we know that there is a problem and we know what that problem is, we can fix it. But you should only attempt to address your own problems if:

  • you understand and accept that you have a disorder
  • you accept that having this disorder means you may have some problems in your life
  • you are willing to talk about your disorder and your difficulties
  • you want to understand other people and how they think
  • you want other people to understand you and how you think
  • you want to understand what is expected of you in certain situations
  • you want to live as independently as possible.

    Talking about your autism or Asperger Syndrome with the people you meet will help them understand you better if they themselves are not autistic, and if they don’t know anybody with autism. It should not become a major topic of conversation at every meeting or every occasion! But it is very much a part of you and how you function in this world. For some people the fact that they have had a hip replacement, or cannot see very clearly, or suffer from migraines, is very much a part of them: it might limit their abilities in some areas, but affect them not at all in others. It is the same for you: your abilities with factual and technical subjects may well be far higher than average; your understanding of what others are thinking, however, might be limited.

    All of us, after all, are individuals, with very individual likes, dislikes, abilities, limitations and interests. We do not all have to be exactly the same in order to get on with each other: we would all benefit from becoming more understanding, tolerant and accepting of people as individuals.

    The consultant who assessed you may know of more resources or contacts in your area, he or she may well organise something themselves specifically for people with autistic difficulties. Your local branch of the National Autistic Society may have a Support Worker for adults who can offer advice and practical support, and possibly also arrange some social events you can go to. Contact the NAS for the address or phone number of your local branch (see below).

    Should you feel that you would benefit from counselling the following organisations may be able to help:

    British Association for Behavioural and Cognitive Psychotherapists (BABCP)
    Tel: 01254 875277
    Website: www.babcp.com

    The British Association of Counselling and Psychotherapy
    Tel: 01788 550899
    Website: www.bac.co.uk

    UK Council for Psychotherapy (UKCP)
    Tel: 020 7014 9955
    Website: www.psychotherapy.org.uk

    FURTHER EDUCATION

    Some further education colleges are especially sympathetic to students who have autistic spectrum problems. Contact OAASIS for advice.

    Most universities are happy to welcome students with autistic spectrum disorders. It might be useful to check out what their pastoral care is like; do they have a ‘buddy’ system in place? When you live in a student flat it will be very helpful if there is someone – a ‘buddy’ –- who knows that you might need prompting occasionally to do things at the right time. For example, get up, change your bedding, shower, get essays written, eat, wash your clothes, write or phone home! See over the page for the University Students with Autism or Asperger Syndrome website address where you will find many useful information sheets.

    Here are a few other organisations you or your family may wish to contact:

    Autism Network International a self-help organisation for people with autism, based in America. Write to them at ANI, PO Box 35448 Syracuse, NY 13235-5448, USA. Membership is $20 for overseas members, and includes 4 issues of the newsletter “Our Voice”.
    Web: www.ani.ac

    British Council for Disabled People
    Tel: 01332 295551
    Litchurch Plaza, Litchurch Lane, Derby DE24 8AA
    Website: www.bcodp.org.uk
    An umbrella organisation set up by disabled people to promote full equality and participation in society.

    The Disabilities Trust
    Tel: 01444 239123
    First Floor, Market Place, Burgess Hill, West Sussex RH15 9NP
    Web: www.disabilities-trust.org.uk
    An organisation for people with autism; acquired brain injury; physical disability; learning disability. Offers information, personal care, rehabilitation and specialist housing.

    Foundation for People with Learning Disabilities
    . London: 9th Floor, Sea Containers House, 20 Upper Ground, London SE1 9QB.
    Tel: 0207 803 1100
    Scotland: Merchants House, 30 George Square, Glasgow G2 1EG.
    Tel: 0141 572 0125
    Website: www.learningdisabilities.org.uk
    The biggest, most comprehensive website on learning disabilities/difficulties in the UK. Includes publications, getting help, events, interactive zone.

    Hoffmann Foundation for Autism, 4th Floor, Cumberland House, 80 Scrubbs Lane, London NW10 6RF
    This organisation offers one-to-one counselling, life skills, social skills group, management of symptoms (stress, anxiety, depression) self-awareness, self worth and outreach.
    Website: www.hoffmannfoundation.org.uk
    Tel: 0208 964 6650

    The Maudsley Centre for Behavioural Disorders, Bethlem Royal Hospital, Beckenham, Kent BR3 3BX
    1. Behavioural Genetics Clinic for outpatients.
    2. Behavioural Disorders Unit: a secure environment for assessment, intensive treatment, specialising in AS, referral must come from a Consultant Psychiatrist.
    3. Mental Impairment, Evaluation and Treatment Service: an inpatient service, referral from Consultant Psychiatrist or Criminal Justice System.
    Tel: 0208 776 4183 or 4256

    Mencap
    Mencap in England Helpline: 0207 454 0454
    123 Golden Lane, London EC1Y 0RT
    Mencap Cymru Helpline: 02920 747588
    Website: www.mencap.org.uk/
    Mencap in Northern Ireland Helpline: 02890 691351
    For children and adults with a learning disability and their families and carers, offers education, support, housing etc.

    The National Autistic Society
    Helpline: 0845 070 4004
    Some areas have NAS Family Service Workers who support adults. Contact the NAS to find if your area has one.
    The website is at www.nas.org.uk
    or write to The National Autistic Society, 393 City Road, London, EC1V 1NE.
    They have a large range of information and publications. The NAS also runs Social Programmes including Social Groups for activities and meetings and Social Skills modules.
    Tel: 0115 847 3540
    Email: socialprogrammes@nas.org.uk

    “Asperger United” – is a quarterly newsletter by and for people with AS. It includes personal accounts, a Pen-pal network etc. Subscription is free to adolescents and adults with AS.
    Ring the NAS, on 0207 903 3595, or write to them at
    NAS Publications, 393 City Road, London EC1V 1NG.
    Email: asp.utd@nas.org.uk

    Rathbone helps people nationwide, including those with learning disabilities, running projects and training courses from bases in England, Scotland and Wales. They can help with support and advice on apprenticeship programmes, unemployed adults and also independent living centres.
    Tel: 0800 731 5321 or 0161 236 5358
    Web: www.rathboneuk.org
    Relate - 16 of their offices can offer ‘Specialist work with people with Asperger Syndrome’. Go to their website at:
    www.relate.org.uk and enter Asperger Syndrome in their search engine for a list of the branches.

    The Derby branch also mentions telephone counselling for AS
    Tel: 01332 349177
    Turning Point
    For people with a learning disability they provide a network of services and treatment in partnership with other professionals and agencies. They also have registered care homes, nursing homes and supported housing.
    Web: www.turning-point.co.uk
    Tel: 020 7702 2300

    BENEFITS

    If you have been diagnosed as having some form of autistic disability, you may be entitled to various benefits. Disability Living Allowance is a tax-free benefit for those who cannot get around or look after themselves without help. Your local Citizens Advice Bureau will be able to help you.
    Visit their website www.citizensadvice.org.uk to find your nearest CAB.
    They also offer some limited on-line advice at www.adviceguide.org.uk.

    Downloadable guides to disability living allowance, attendance allowance, incapacity benefit & employment for parents, professionals, advice workers and claimants themselves.
    Steve Donnison, Benefits and Work, PO Box 779, Taunton TA1 9BU.
    Website: www.benefitsandwork.co.uk
    Tel 01823 602796

    Also see the website www.direct.gov.uk/DisabledPeople/fs/en
    for DLA, Attendance Allowance, Carers’ Allowance information.

    Direct Payments are cash payments made in lieu of social service provisions, to individuals who have been assessed as needing services. They can be made to disabled people over 16, people with parental responsibility for disabled children and to carers. The aim is to give more flexibility in how services are provided and to give greater choice and control to those concerned.
    Web: www.dh.gov.uk (enter ‘direct payments’ in search box).

    The Disability Alliance, Universal House, 88-94 Wentworth Street, London E1 7SA
    Advice Line: 0207 247 8776

    The Benefit Enquiry Line for People with Disabilities is
    0800 88 22 00 (Mon – Fri 8.30 – 6.30 pm; Saturday 9.00 – 1.00 pm).
    There is also a lot of information on the Dept for Work and Pensions
    website: www.dwp.gov.uk - click the link entitled ‘disabled people and carers’, then ‘long-term ill and disabled’.
    The NAS produce helpful fact sheets on Disability Living Allowance and Welfare Benefits.
    Ring them on 0845 070 4004.
    Or go to their website at www.nas.org.uk.

    EMPLOYMENT

    Bounce Back is a website which has been developed to help disabled people improve their chances of getting a job.
    Web: www.bounceback.org

    Employment Opportunities is a national charity helping people with disabilities find and retain work.
    www.opportunities.org.uk

    PROSPECTS
    is an employment and training consultancy set up by the NAS for people with autism or Asperger Syndrome who wish to work. It operates in Greater London
    Tel: 0207 704 7450
    Web: www.autism.org.uk/prospects/london

    Greater Glasgow
    Tel: 0141 248 1725
    Web: www.autism.org.uk/prospects/glasgow

    Greater Manchester
    Tel: 0161 998 0577
    Web: www.autism.org.uk/prospects/manchester

    S Yorks
    Tel: 0114 267 6210
    Web: www.autism.org.uk/prospects/sheffield

    Telephone the Autism helpline 0845 070 4004 if you are not in those areas. There is a downloadable information pack if you are looking for a job
    www.nas.org.uk

    SKILL
    the National Bureau for Students with Disabilities. Helps with Post 16 education, training and employment throughout the UK.
    Website: www.skill.org.uk.
    Email: skill@skill.org.uk.
    Call them on 0800 328 5050.
    Skill, Chapter House, 18-20 Crucifix Lane, London SE1 3JW.
    They also have offices in
    Scotland 0131 475 2348
    Northern Ireland 028 9028 7000
    and Wales 01443 654317.

    WORKSTEP- provides job support to over 26,000 disabled people and helps them to reach their potential within a commercial environment. Contact your Jobcentre Plus office or Jobcentre who will put you in touch with a Disability Employment Adviser

    COMMUNITIES / HOMES etc FOR ADULTS

    There are many privately run or charitable homes and communities for people with autism. Your local autistic trust or society will have more information, or contact the National Autistic Society (0207 833 2299). Also try your local Social Services for their list of registered homes.

    OAASIS keeps a list of residential homes/supported living specifically for adults who have autism or Asperger Syndrome. Please contact OAASIS for a copy.

    IF YOU HAVE A PC WITH INTERNET CONNECTIONS

    A very good American site is OASIS (On-line Asperger Syndrome Information Service). It has articles by people with autism and Asperger Syndrome, and links to other websites: www.udel.edu/bkirby/asperger/
    You might like to contact others on-line who have Asperger Syndrome.

    Check the University Students with Autism and Asperger Syndrome
    website: www.users.dircon.co.uk/~cns/
    for helpful papers written especially for students, and an email forum you can join. Lot of UK information here too. And a (US) site for your families: Families of Adults with Autism and Asperger Syndrome
    (FAAAS): www.faaas.org.
    Or they can write to them at PO Box 514, Centreville, MA 02632, USA.

    And for brothers and sisters of people with autism or Asperger Syndrome: there is a Sibling Support website at www.sibs.org.uk.
    Write to them at Sibs, Meadowfield, Oxenhope, West Yorkshire, BD22 9JD,
    or call 01535 645453.
    A site written by a young man with AS - www.as-if.org.uk/index.htm.
    His site offers an email pen pal network and a lot of information.

    Marg Segar’s (1974-1997) book Coping - A Survival Guide for People With Asperger Syndrome can be viewed at:
    www.asperger-marriage.info,
    under the heading Survival Guide. It contains down to earth, honest information on relationships, work, driving and much more, or order from Early Years, see further reading below.

    An Asperger Syndrome Helpsite for Teenagers and Adults (ASHTA), which includes a self-test and creating a letter to a doctor can be found at
    www.aspergercounselling.net

    HeartnSoul is ‘like a big family of artists who have learning disabilities’. Check out their website if you like art/drama/music, they also run the Beautiful Octopus club in London.
    Web: www.heartnsoul.co.uk.
    Phone 0208 694 1632.

    Maxine Aston, a counsellor for people with AS, has a very informative site at
    www.maxineaston.co.uk.
    Includes information on CAD – Cassandra Affective Disorder: sufferers are women who are emotionally deprived because they are married to someone with AS. This of course may also apply to men who are married to someone with AS.

    One For Us.com
    A website for people who have a learning difficulty, not for their parents or carers! Clear explanations and information on health, housing, money, relationships.
    Website: www.oneforus.com

    For women:

    There are many articles and books coming out on this smaller number of sufferers, the website
    www.as-if.org.uk/female.htm
    has a section written for females; an extract from Asperger’s Syndrome in Women: A Different Set of Challenges? by Catherine Faherty can be viewed at
    www.autismtoday.com

    FURTHER READING

    see also OAASIS information sheet ‘Books – where to find them’
    There are now many books on Asperger Syndrome / autistic spectrum disorders. Here are a few:

    Independent living for adults with autism and Asperger Syndrome, £4.50
    What is Asperger Syndrome, and how will it affect me? A booklet for teenagers. £1.50
    What next? Moving on from diagnosis. A leaflet for adults, £0.25.
    These three available from the NAS as above.

    Coming Out Asperger: Diagnosis, Disclosure and Self-Confidence. Explores the complexity of diagnosis, the drawbacks and benefits of disclosing a diagnosis of a ‘hidden disability’. £13.99
    Succeeding in College with Asperger Syndrome A student guide. Authors John Harpur, Maria Lawlor, Michael Fitzgerald. £13.95.
    How to Find Work that Works for People with Asperger Syndrome by Gail Hawkins. £14.95.
    Making Sense of the Unfeasible My Life Journey with Asperger Syndrome, and, Survival Strategies for People on the Autism Spectrum by Marc Fleisher, who received a diagnosis in the 1970’s after being considered mentally retarded.

    All the above are available from Jessica Kingsley Publishers
    www.jkp.com, The NAS www.nas.org.uk.

    Coping was written by Marc Segar, a young man (now unfortunately deceased) with AS, to help others understand and deal with their condition. It costs £4.75 + 80p p&p from
    The Information Service, The Elizabeth Newson Centre, 272 Longdale Lane, Ravenshead, Nottingham, NG15 9AH
    Tel 01623 490879
    Website: www.sutherlandhouse.org.uk

    An Asperger Marriage by Gizela and Christopher Slater-Walker, an English couple. Christopher was diagnosed with Asperger Syndrome when an adult.
    Website www.asperger-marriage.info/

    The Asperger Love Guide – A Practical Guide for Adults with Asperger’s Syndrome to Seeking, Establishing and Maintaining Successful Relationships. The authors, Genevieve Edmonds and Dean Worton, are both adults with AS. Available from Sage Publications www.sagepub.co.uk.

    Also try the internet book shop www.amazon.co.uk .

    Cambian Education Services run seven residential special schools and colleges for young people with autistic spectrum disorders, Asperger Syndrome/HFA, severe learning difficulties. OAASIS can give you advice on the schools and send you their prospectuses.

    OAASIS produces 8 chargeable publications entitled ‘First Guide to…’; wallet sized cards explaining 9 learning disabilities and a wide range of free Information Sheets. Please contact OAASIS for the full list, or view them on the website at www.oaasis.co.uk. All the information sheets are checked annually, please ensure you have the current version.