Pretending to be Normal

by Liane Holliday Willey

  Auditory sensitivity

  1. Wear earplugs designed for light sleepers, using caution to make sure you can still hear emergency vehicles, people when they are talking to you and any other sound that is important to your safety, learning and well-being. Avoid using cotton balls or facial tissues as earplugs, because they can create their own potentially disturbing frequency as air passes through the fibers of the cotton.

  2. Simply try to avoid areas where different noises merge together, such as large sports stadiums, concert halls, busy malls, rooms filled with loud people and music, large cafeterias, etc. Consider earplugs if you do go to any of those places.

  3. Wear stereo headphones to mask other noises, again making certain you can hear possibly important sounds.

  4. Think about enrolling in an auditory integration training program.

  Food sensitivity

  1. If food presents a problem for you because of its texture, smell and/or taste, try to find at least a small handful of foods from each nutritional group you can accept and simply stick to eating those, even if it means you will bring your own food to restaurants and other people’s homes.

  2. Try dressing up mushy or slimy sensations by adding crunch foods like celery, nuts, seeds or carrots; anything you like that could bulk-up the soft texture.

  3. Try eating the foods you really do not like, but think you need to eat for your health, when you are very relaxed and when you can put your thoughts on something else like your favorite book or television show. Begin by eating just one or two tiny bites, working your way up to a full bite size only if you are able.

  4. If you feel you can, experiment with new recipes that change the way your aversive food looks and tastes. For example, you might be able to eat a small portion of a banana, if it is mixed in a chocolate shake, or you might be able to eat some cauliflower if it is mashed with a potato.

  5. Talk to your doctor to see if you should be taking supplements to fortify your restricted diet.

  Olfactory sensitivity

  1. Put a bit of your favorite smell, if you can find it in a liquid or paste, on the end of a cotton ball or on the inside of your arm, and smell it when other smells overwhelm you.

  2. Wear nose plugs when you are in a private area.

  3. Purchase only non-scented cleaning and bathing products.

  4. Politely ask those around you to please not wear perfumes or eat heavy smelling foods in your presence.

  5. Write your local political representative about the possibility of passing new laws which restrict or prohibit the use of advertisements that smell, such as perfume and cologne flyers or washer and dryer soap samples, that often come in magazines or to private mail boxes.

  Appendix VI

  Thoughts for the Non-AS Support People

  When my daughter was diagnosed with Asperger’s Syndrome, her doctors gave me one outstanding piece of counsel. They told me that my husband and I would now become the experts on AS. We, in effect, would stand as her greatest advocates. The truth of their prophecy has been shown virtually every day. The general public is largely uneducated in AS. I have grown to believe that this is the single most damaging element to the AS cause, that is, understanding and acceptance. Without knowledge of the symptoms, outcomes and even confounding attributes, it is nearly impossible for others to recognize and support AS individuals. Education. This is the key, the very accessible key. International, national, regional, state and local Asperger support groups abound (see Appendix VII).

  The WWW is a virtual AS classroom, brimming with dozens of sites devoted to AS research, personal stories, medical implications, educational and employment considerations. Even the mass media has begun to embrace the cause by showcasing AS families and persons. Slowly, the world of Asperger’s Syndrome is finding its way to the mainstream mind. With your help, it will get there faster. If one thing is certain in the AS world, it is simply that the diagnosis means different things to different people at different times in their lives. Put another way, AS affects individuals in varying degrees and in varying ways. This reality can make it quite difficult to suggest a pat and foolproof summary of how others can lend effective support. Yet, because support from others is so often extremely instrumental to the complete well-being of an AS person, it seems imperative that something concrete be suggested, even if it serves as only a guideline and never as an absolute. The following guide is an attempt to do just that. It is directed toward anyone who considers themselves a source of support for AS individuals.

  Family, spouse and close friends

  • Realize the importance of your support, even if the AS person is unaware of it. You will, in many ways, serve as a role model for behavior, a counselor when feelings of confusion and insecurities mingle toward the surface, and a calming influence should things spring out of control.

  • Try to find ways to deal with the stress you will face as the main support system. Take time outs, promise yourself opportunities to unwind and relax, seek a mentor or counselor of your own, should you feel it is called for.

  • Expect to give only what you can, never taking too much away from your own identity. Try to reach a compromise between the needs of the AS person in your life and your own. For instance, you might relish socializing, while your AS friend might abhor it. You could work out an arrangement that finds you going places with other friends while your AS friend stays at home with a good book or a favorite movie you brought home for her to enjoy. One caveat, try never to make the AS person feel less important because they do not share parts of your identity.

  • Understand people cannot snap out of AS traits, instantly leaving behind obsessive compulsive rituals or rigid thinking or literal mindedness. Realize it takes continuing education, behavioral modification training, time and personal experience memories to help people with AS find appropriately effective coping skills. Keep these realities in mind when you begin discussions, particularly heated debates or arguments with an AS person. If you employ logic, concrete and controlled language, specific examples and an objectively open mind, you will be far more likely to keep the channels of communication between you and your AS friend open and meaningful.

  • Help the AS person establish a small group of friends who are educated in AS and able and willing to accept the nuances and intricacies of the syndrome. Be confident that AS people normally enjoy friendships, they simply might be confused in knowing how to begin and maintain them.

  • Try to help the AS person avoid the kinds of pitfalls that will send them reeling with confusion and consequent dismay. Help them avoid situations that will tax their sensory sensitivities; encourage them to turn their hobbies and interests into both therapeutic and career opportunities; be prepared to help them organize their home lives by assisting them with any number of things such as shopping, housekeeping, child rearing practices, day-to-day chores and responsibilities, wardrobe selections, and society’s expectations.

  • Find direct ways to reassure them of your affection and friendship. Share their hobbies, follow their interests, tell them you like listening to their stories, laugh at their jokes, go places with them, in short — enjoy them just like you enjoy other important people in your life.

  • Do not condescend or patronize. AS people are not stupid, they are not without wits. They simply view the world through different windows. Try to see the world as they do, and you will likely come away refreshed and renewed.

  Educators

  • Keep in mind that many AS people lack organizational skills, therefore do not be surprised when they forget assignment due dates, homework, classroom materials, etc. Be as flexible as you possibly can. Try to assist the student by giving him or her visual reminders such as a picture of all the things that should be brought to class each day, a calendar with assignment dates highlighted and marked in bold ink, and notes on brightly colored paper that serve as memos and reminders for the day, week or month. Establish a peer mentor who can be responsible for calling the AS student wit
h reminders and hints on what to bring to class and how to prepare for assignments. And send important notes and dates home to family members who can also make reminder calls.

  • Remember that people with AS have problems with abstract and conceptual thinking. Use very concrete examples and explanations, and literal and direct word meanings when you are explaining thoughts that involve high levels of problem solving skills. Suggest tutoring services, if you feel they are necessary, and be certain the student has taken all the prerequisite courses they need before they enter your class. Skipping courses simply to accommodate a class schedule is a terrible idea for the AS person. They need as much background building material as possible.

  • Note that odd behaviors can often come as a result of stress. If you see your AS student becoming noticeably upset or engaging in self calming rituals, ask them in private if they might not like to take a few moments away from the classroom to relax or if they need a session with a guidance counselor.

  • Be prepared to hear some different kinds of discussions and questions from your AS student. Realize they are not intentionally trying to goad you or act out rude behavior. Know that weak social skills and an honest misunderstanding of the language or logic you might be using could very likely be at the root of these kinds of situations.

  • Avoid idioms, words with double meanings, sarcasm and subtle humor.

  • Know the AS person probably has difficulty reading non-verbal messages. Do not rely solely on these to convey your messages.

  • Try to use plenty of visual aids, allow the student to use tape recorders, be flexible in peer assignment requirements and classroom presentation expectations.

  • Keep changes in routine and class structure to a minimum.

  • Help the student find a seat in the class that will keep visual and auditory distractions to a minimum.

  Employers

  • Always keep in mind that what AS people might lack in terms of social skills or flexibility can be more than compensated for through their tremendous sense of loyalty, dedication, strong knowledge base and solid capabilities.

  • Guide the AS employee to a job that matches their interests knowing that this can be a very strong motivating factor which works to help the AS person make incredible strides and accomplishments in that very field.

  • Encourage jobs that require few social skills and little socializing. Capitalize on the fact that many AS people might reach success in areas that other persons would normally find too lonely or isolated.

  • Assign freelance projects that can be completed at home where the AS person might feel far more comfortable and therefore far more able to really concentrate on doing an excellent job.

  • Take advantage of a typical AS characteristic — a desire for routine and repetition. Help the AS person find jobs that follow a pattern and are predictable. This will do quite a lot to prevent stress and anxiety which could interfere with high productivity.

  • Prepare the AS person in advance before making changes in job expectations or responsibilities, office relocations, schedule changes and staff shifts. Again, stress and anxiety will be reduced if change is kept to a minimum or, at least, gradually made.

  • Use a mentoring system. Let an empathetic co-worker who has ideally been educated about AS assist the AS employee with such things as group projects, informal and formal presentations, following and understanding company rules and expectations, maintaining composure and professionalism in social situations (though contact with customers and clients should probably be kept to a minimum unless the AS person is well trained in how to handle themselves in such situations) and even in finding their way around the physical environment of the company.

  • Ask the AS person what she or he needs in terms of environmental considerations. For example, specific lighting and acceptable noise level requirements.

  Appendix VII

  Support Groups and Other Helpful Resources

  Support groups and general information

  Each of these groups is committed to Asperger’s Syndrome and other related developmental disorders. Those on-line typically offer additional links for further study.

  American Occupational Therapy Association, Inc.

  4720 Montgomery Lane

  Bethesda, MD

  20814-3425

  Telephone: 1-301-652-2682

  Fax: 1-301-652-7711

  http://www.aota.org/index.html

  The ASPEN Society of America, Inc. (Asperger Syndrome Education Network)

  P.O. Box 2577

  Jacksonville, FL

  32203-2577

  Telephone: 1-904-745-6741

  http://www.asperger.org/

  Asperger’s Syndrome Support Network, associated with the Autistic Family Support Association, Victoria, Australia

  Asperger’s Syndrome Support Network

  C/O VACCA

  PO Box 235

  Ashburton Victoria 3147

  Australia

  http://home.vicnet.net.au/~autism/assn/asperger.htm

  The Autism Society of America

  7910 Woodmont Ave

  Suite 650

  Bethesda, MD

  20814-3015

  Telephone: 1-800-3-AUTISM

  Fax: 1-301-657-0869

  http://www.autism-society.org/asa_home.html

  The National Autistic Society

  393 City Road

  London EC IV 1NE

  Telephone: 0171 833 2299

  Registered charity no. 269425

  Email: nas@mailbox.ulcc.ac.uk

  O.A.S.I.S. (Online Asperger Syndrome Information and Support)

  http://www.udel.edu/bkirby/asperger/

  Sensory Integration International (SII)

  The Ayres Clinic

  Telephone 1-310-320-2335

  Sensory Integration Resource Center

  http://www.sinetwork.org/index.htm

  Best books

  These books are among those I routinely see recommended by parents, researchers and individuals with Asperger’s Syndrome.

  Asperger’s Syndrome: A Guide for Parents and Professionals

  Tony Attwood

  Foreword by Lorna Wing

  Jessica Kingsley Publishers, London, 1998.

  ISBN 1 85302 577 1

  This is the book that changed my life. One of the best layman’s book on Asperger’s Syndrome. A must-have not only for teachers and parents, but for anyone who is just learning to understand Asperger’s Syndrome.

  Asperger Syndrome: A Guide for Educators and Parents

  Brenda Smith Myles and Richard L. Simpson PRO-ED, Austin, Texas, 1998.

  ISBN 0 89079 727 7

  This book uses practical and easy to understand language to explore topics such as social enhancement, behavioral management, academic support and the impact AS has on families.

  Autism and Asperger’s Syndrome

  Uta Frith, ed.

  Cambridge, Cambridge University Press, 1991.

  ISBN 0 521386 08X

  This book is quite technical, but it is a very important book that does much to explain Asperger’s research.

  Higher Functioning Adolescents and Young Adults with Autism: A Teacher’s Guide

  Ann Fullerton, ed., Joyce Stratton, Phyllis Coyne, and Carol Gray PRO-ED, Austin, Texas, 1996.

  ISBN 0 890796 815

  This insightful and helpful guide explores the issues facing adolescents and young adults, suggests how to adapt classroom materials and provides ideas for social skills training.

  Sensory Integration and the Child

  Jean Ayres

  Western Psychological Services, Los Angeles, 1979.

  ISBN 0 874241 588

  A comprehensive and important resource for understanding and helping the person who experiences Sensory Integration dysfunction written by Jean Ayres, the founder of Sensory Integration therapy.

  Teaching Your Child the Language of Social Success

  Marshall P. Duke, Stephen Nowicki, and Elisabeth
A. Martin Peachtree Publishers, LTD, Atlanta, Georgia, 1996.

  ISBN 1 56145 126 6

  A complete book filled with many useful and clear ideas for helping people, not just children, understand and use nonverbal communication and related language processes.

  The Out-of-Sync Child: Recognizing and Coping with Sensory Integration Dysfunction

  Carol Stock Kranowitz, Foreword by Larry B. Silver Perigee, 1998.

  ISBN 0 39952 386 3

  Though this book is not written solely for the person with Asperger’s Syndrome, it does contain information and suggestions about Sensory Integration Dysfunction that will apply to anyone facing those difficulties.

  Thinking in Pictures and Other Reports of my Life with Autism

  Temple Grandin

  Doubleday, New York, 1995.

  ISBN 0 67977 289 8

  A very personal account of what autism is and what it is like to be affected by it.

  Publishing companies and bookstores that offer Asperger’s Syndrome titles

  Jessica Kingsley Publishers

  In the UK:

  116 Pentonville Road

  London N19JB

  England

  Tel: +44 (0)171 833 2307

  Fax: +44 (0)171 837 2917

  In the US:

  325 Chestnut Street

  Philadelphia, PA

  19106

  USA

  Tel: (toll free) 1 800 821 8312

  Tel: 1 215 625 8900

  Fax: 1 215 625 2940

  http://www.jkp.com

  Future Horizons

  720 N. Fielder

  Arlington, TX

  76012

  Tel: 1 800 489 0727

  http://www.futurehorizons-autism.com/

  Learning Disabilities Association

  4156 Library Road

  Pittsburgh, PA