The Autistic Adult

The Early Years of The Maap (p. 25) Dear Sue, Im writing to you, not so much to have this letter printed in the newsletter, but for direction or insight into a problem that has occurred with Todd, my 24 year old residual autistic son. Two weeks ago Todd walked into the house, grabbed a beautiful Victorian lamp, and smashed it against a library table. Before I could even realize or fathom what was happening, two more lamps and once ceiling fixture were broken. Todd looked quite wild. I immediately placed a call to a therapist Todd sees once a month, and while I was waiting for him to return my call, I gathered all my strength and told Todd he must clean up his mess. I knew that I must remain in control. He was very frightened and wanted to know what would happen to him. He was afraid of being sent back to the institution. (He spent 20 months at Fairlawn Center in 1970-72 when there was nothing for him here educationally.) My husband works after-noons 80 miles away, and it was impossible to call him except in an extreme emergency. When the therapist called back (a matter of 15-20 minutes), Todd was busy cleaning the shambles (monentarily it would be $500-$600 worth of damage). The therapist was great. He said to relieve Todds anxiety, he must know what his punishment would be. He gets $10 per week to do with as he wishes, and we take care of food, clothing, and other needs. I said $5 per week repayment was sufficient. My husband, Todd, and I visited the therapist a few days later. We agreed to take Todd more often and to have more input as to whats happening with him. We mentioned a group home. The more I even think of it, the uglier the thought becomes because for Todd it would be a step back, and he has made so much progress forward. It also at this point would be taken as punishment by Todd. As we investigated the incident, we found several factors precipitated the incident: (1) Todd spent the afternoon with a friend who showed him pornographic pictures and told him how he smashed things. When confronted, the friend wouldnt tell everything when he realized there were some things I didnt know. His mother is my best friend and is on vacation. (2) Our daughter recently got a job and moved away and has her won place. (Something Todd has always wanted.) He can never live alone. Hes not streetwise and extremely nave. (3) The dairy farm where he works may be forced out of business. (4) Todd is extremely uncomfortable with me. He didnt talk much before, but now its strictly out of necessity. An event like the lamp smashing happened 12 years ago with a similar type lamp. (Needless to say, these lamps will not be a part of my decor again.) When it happened 12 years ago, I just physically restrained him and he came out of it. I feel that he needs to grow and move upwards. He has an uncanny electrical abilityHis thing is electricity. All autistic people, I understand, have a fixation (for lack of a better word). He does all our wiring. Theres virtually no aspect of electricity he doesnt know. He does do some odd jobs for a few people, but not enough to keep him busy in the mainstream of life where he likes to be.

He says hed like a workshop where he could do his wiring and jobs. I dont know. Right now Im scared. I want for him what he wants. To have friends, a job wiring, and to play ball in the summera simple life. We have all fought so hard the 20 odd years since hes been diagnosed, and he goes forward. He graduated from regular school. Our rural county could offer him nothing beyond that. The workshop (sheltered) was caught in a political battle with Community Mental Health and was forced to close. He still went on. Do you know parents and other autistic people caught in a similar situation? Its almost as if theres no place for residually autistic adults. I think in a way its worse in a rural area. The possibilities are so limited. Does the Dept. of Vocational Rehabilitation have a responsibility in an issue like this? Autistic children grow up. What happens to them when they have a foot in each world? Im lost. I want to fight and get him something so that he feels like part of the world he desperately wants. I dont know where? Do you know anyone who has been in similar circumstances? Thanks for the ear. Sincerely, Ellen Toner Dear Ellen, Thank you for sharing this difficult story with us. Your plight is common to many parents of adult high-functioning autistic people. I hope that others who have been in this situation and who have resolved it to some degree will write to you in care of me, so that I may pass their letters along to you. It almost seems as though we work tirelessly with our children, only to find that once theyve achieved so many goals, there is no place in society where they can live in safety but with the independence they all seem to want to much. Sincerely, Susan ******* The Early Years of The Maap (p. 27) Dear Mrs. Moreno, We are parents of a high-functioning autistic young man, 32 years old. Although Jim never attended high school, he was self educated enough to pass his G.E.D. the first time it was offered to him. Jim didnt begin to talk until he was 2 years old. When he began talking he was reading. In many areas he gives the appearance of being mentally retarded, especially in the social skills. However in other areas he tests far above average. He works in a sheltered workshop and lives independently. I search constantly for anything that might be of help. Please keep us in mind when you complete your publication. Sincerely your, Rosemarie Sperbeck

******* The Early Years of The Maap (p. 30-31) Dear Susan, In reading your newsletter of September, 1986, I felt it might be helpful to some readers if I would comment on the good effect that moving into a group home has had on our son. Kalon was twenty-nine when he moved from our home to a group home for highfunctioning autistic adults being established in Raleigh. He had wanted to move away from home since he was twenty when his brother, two years younger than he, went off to college; but there had been no place for him to go. At last when the group home was established, he went with great anticipation. The group home experience has been the best thing that has ever happened to him. Six young men live there and to our amazement, from the very beginning they have gotten along well togethersharing stories, telling jokes, playing games and planning what things they will do each week. Kalon has felt relieved to be more independent than living at home. At our home, the staff works with Division TEACCH to design contracts in diet management, money management, social interaction, skills management, behavior management, etc. Also, the residents are in two social skills workshops each week, to learn social interaction skills and a basic enjoyment in life. And as the young men are able to improve through these contracts and workshops, they feel enhanced self-worth. Further, three of the six men are competitively employed full time now and two more are employed part time, so they are very encouraged. Also, each has as his goal to live first in a supervised apartment and then in an apartment or house of his own. So, for those young men in North Carolina who live in the Raleigh Group Home for High Functioning Autistic Adults, the group home has become a step forward, a movement upward, and a source of hope that they can live more normal lives and in time achieve full independence. Thank you Susan for preparing your newsletter. Again, I would prefer highfunctioning autism to describe people with autism who have normal intelligence and who function at a higher level than those who have mental retardation. Best regards, Jo Anne Jeffries ******* The Early Years of The Maap (p. 31) Dear Mrs. Moreno, Enclosed is an article about one of the residents of the Raleigh Group Home for High Functioning Autistic Adults, Inc. Robert and I would like you to use this in your newsletter, if you think it is appropriate. Sincerely, Curtis A. Bass, Jr.

Director Robert Gillis, an autistic adult, was recently named Employee of the Month in East Side J Wing at the Environmental Protection Agency in Research Triangle Park, N.C. Robert has been working at EPA since September, 1985, as a lab and animal technician. His supervisor said the award was made by peer election. She said the award goes to the employee who is most helpful, most friendly, most improved, who goes the extra mile, or is just deserving of being recognized. To win, an employee must receive at least 50% of the votes. Dear Robert, Thank you for sharing the news of your wonderful award with us. I know that I speak for all of the 153 families of high-functioning people with autism who receive this newsletter when I say that your receiving this award gives us hope for the potential of each of our wonderful children. Keep up the good work, Robert. We thing you are terrific! Sincerely, Susan ******* The Early Years of The Maap (p. 31-32) Dear Sue: My son Ray, who is now 21 is in his last year of High School. He attends Foothill High School and at the present time his teacher is working on trying to find a job for Ray. When he calls to find out about a clerical job they tell him that they only serve the physically handicappedor even the retarded have a place to gobut the minute you mention Autism you can bet your bottom dollar that you might as well just forget it. They wont take them. My son can type, use the 10-key and file. If taught the right way, like Lorna Wing would say in one of her articles, these kids can learn and excel. I treat Ray like any normal young man. He even went to his Senior Prom in 1984 with a girl that attends his school. They went out to dinner at a fine restaurant. Then they went to the prom at the Holiday Inn. He did everything a normal young man would do at his prom (except get drunkHa!Ha!). In order to get Ray in a public school I had to fight with all of my might. I almost had a nervous breakdown trying to prove to them how smart Ray really is. All they could see is this strange kid with this bizarre behavior and not what Ray could do. They finally realized how intelligent he is. At one point they suggested a Trainably Mentally Retarded Program. I almost had a stroke when they suggested it, so they never mentioned it again. I jumped down their throats, I was so upset. For the first 4 years Ray had an aide going to his classeshe took Math, Typing, Business Skills, Adaptive P.E. Then in his special day class he had Speech, History, and Science. He has made a lot of progress, but as you already know, society does not understand the problem. So we have to keep on fighting to get our kids into the community. We need to educate the whole

world on this most baffling disorder. If only I were 20 years younger and knew what I know today. I would have more energy left. Ray is also using respite by going out with the caretaker. They go out to dinner, bowling, skating, concerts, etc.rather than having him sit at home while parents go out. Even if we dont go out I call respite and have them take Ray to nice places. He is also getting socialization training from Transaction Toward Self Reliance, so little by little he is getting what he needs. With all of the work that I put into this, Ray can now go to the bank by himself, take care of all of his banking transactions, knows how to deposit and withdraw money, knows also how to write a check, and even knows how to balance his checkbook. Im looking forward to reading the Newsletter as there may be other tips that we parents can learn to help our kids. The schools are still not trained to work adequately with the autistic. I remember one parent used to say that the schools educate to vegetate, and that is so true. I really believe that parents should work with their kids at home. I know thats what helped my son. If I left it to my school, my son wouldnt be where he is today. We must let that happen, especially with the high-functioning. Thanks for listening. Good luck. Sincerely, Helen Richard Dear Helen, Thank you for your letter. I think your suggestion for using available respite care services to get companions for doing things out in the community is excellent. Your problems with the school system point out a problem common to most of our parents. However, I am very hopeful that this picture is changing for the better. There are many caring educators who are subscribing to this newsletter and are finding other ways of seeking information about high-functioning autistic people so that they can make their programs more appropriate for our autistic children and adults. Sincerely, Susan ******* The Early Years of The Maap (p. 41-42) Here is a reprint of a newspaper article by Ellen Toner about her son Todd:
Two days before his twenty-fifth birthday, Todd our autistically impaired son, called from the farm where he works part time. He announced that he wasnt coming home anymore. Wed known for sometime that he wanted a place of his own. Ever since hed graduated from high school in 1980, hed been saving old dishes and pots an pans. He even bought a vacuum cleaner with some of the money he had received as graduation gifts. These were ready in case he got his own place. Last year (1986) when Todds sister got a job and moved out, Todd went through a particularly urgent phrase of getting my own place. He tried to pressure us into naming a date when he could get his own place.

Todd receives Social Security Supplements (SSI) and some wages from the farm where he works. I didnt really believe it would be enough to allow him to live on his own. The whole idea of Todd living alone seemed too unreal to conceive. Todd is very nave and doesnt see the world as it really is. He believes everyone is good and kind if they are nice to him. He does not understand the subtleties of human nature and hes very vulnerable. When he was diagnosed as having a problem in 1964, there were no educational services available for him. We received only, Put him away and try to live a normal life. For the next sixteen years we cried, fought, and pursued the best education and lifestyle possible for him. It included the twenty months he spent in an institution because there was nothing else. In 1972 when Public Act 198 went into effect, we breathed easier thinking that now life would be less hectic. It wasnt. There was nothing in the special education law (198) that provided for children afflicted with autism, a very unique communication disorder. It wasnt until 1983 that the Autistically impaired Rules were added to the special education rules, too late for Todd. About three months before Todd was released from Fairlawn Center, he told me of a dream hed had one night, To live at home and go to school on the bus and come home on the bus. The dream came true. Several years later he had another memorable dream. To graduate from regular high school. This dream had more trouble becoming reality. There were many barriers. I had an especially bad encounter with a school system and later, when Todd had received his diploma, he said, I dont know why you dont like the school. They gave me my diploma. He was totally unaware of the events that had preceded his graduation. We ignored or put off the latest of Todds dreams, A place of my own, but he knew the time must be now. He forced us to quit hanging on and meet his needs. After his phone call, I started to wonder if it was possible. Could he live on his own with minimum intervention? He would get extra SSI living by himself. A certain amount was deducted from his present checks because he lived with his parents. He would get that amount living on his own. I realized with that and the wages he made, he could probably do it. I helped him find an apartment. He was so fearful that wed renege, he wouldnt come home again. His father and I moved his belongings and hes lived in his own apartment for over five weeks. Its been very difficult. First there was the trauma of just letting go, not having his presence in the house. There was no pressing need to be home by four oclock to take him to chores, and less groceries. Mostly the realization of not being needed by a man-child Id thought of as a boychild. Its time to reorganize and reassess life. In that sense were not much different than other parents whose children have left home. We visit Todd regularly and he calls us several times a week. Do you have any extra food youre not using? Like what? Hmmm, maybe an extra carton of ice cream. Not so very different.

******* The Early Years of The Maap (p. 42-43) Dear Susan, Our son Jason is now 12 years old and is currently in an Autistic-impaired classroom in a regular middle school. This past school year he was mainstreamed into a two hour language arts block and science class. Because his math skills are so high, he was tentatively placed into an 8th grade algebra class. The school principal was very supportive (it was his idea to try it) and the math teacher had infinite patience. That class was the most positive experience of the school year. The 8th graders were much more

tolerant of Jasons eccentricities. He was teased and taken advantage of more by his 6th grade peers. The topper of the school year was this Spring. Jason was able to participate in a school-wide math test and placed top in the school at the 6th grade level. He went on to the regionals and placed in the top 25 of over 200 participants. That enabled him to go on to the state competition where he placed 4th in the state! Since the Autistic Impaired rules became law four years ago, weve been very pleased with the services now available. By being in a regular school, we have mainstreamed opportunities and the A.I. room provides the safe base you refer to in your presentation. The regular classroom offers academics and peer interaction while the A.I. base teaches community, social, leisure and communication skills. A lot of what if situations are presented to help the kids through confusing and frustrating situations. One final comment that I took for granted before the N.S.A.C. conference: While I was writing this letter, Jason made microwave popcorn. He can also do pancakes and heat the syrup in the microwave. When we finished the popcorn, he volunteered to do the few dishes that were dirtied and dried out the sink when he finished loading the dishwasher. The dishes are something weve just started working on. He charges me 1 cent for each dish, glass, etc. Sometimes I feel the behavior modification techniques we used in the early years have gone awry. He has always liked money over M&Ms and most demands made on him are prefaced by, How much will you pay me? But the 8 cents those dishes cost me tonight brings us one step closer to his being able to function independently. Id say that it was money well spent. Taffy Wuthrich ******* The Early Years of The Maap (p. 47-48) Dear Susan, Families with high-functioning autistic children have often been forgotten in the shuffle. It seems like there has been a more pressing problem to attend toand frankly I have often felt embarrassed talking about my problem when I have seen families with much bigger difficulties. Yet, seen from the point of the young adult with so-called residual autism, always feeling you are different, but not knowing why and how, can be traumatic enough. In fact, I sometimes feel that high-functioning autistic people suffer more being so aware of their problems. I will never forget when my daughter, who was a teenager at the time, first met a young schizophrenic boy we knew. She was so excited meeting a severely handicapped personfor that he iswhom she could talk to and relate to. After the encounter she said, He and I are so different, he is schizophrenic and I am autistic, but we sure have a lot in common. Indeed they have been very special friends ever since. My daughter is not always considerate of his needsthat is beyond her ability, and he is sometimes too sick to care about her, but there is a small seed of love that has been beautiful to see develop. Both have gotten something out of the relationship. He has gotten a new family to visit which shortens long days of unemployment and people with whom to share his love of music. This boy is one of the most gentle people I have known and my daughter has picked up some awareness of other peoples feelings. Evidence of this can be seen in

a remark about an alcoholic friend of hers: Everybody needs a friend. Doesnt B. also?, she said when I was voicing a certain reserve about one of her street people friends she met when living in a group home. She was right: Everybody needs a friend. That brings me to an idea of mine. Would it not be neat if there could be some social functions in connection with the annual convention for high-functioning autistic adults? Or some summer vacation programs? My daughter likes to travel. This spring we went to Epcott-Walt Disney in Florida. I went along because I could think of no other friends that would be suitable. For one thing there are so few autistic girls and sharing of a hotel room, etc. is too difficult. I realize that it is not too easy to get compatible partners together. They are all so special. Therefore, the best way to get acquainted would be a short term event with qualified counselors availablelike a convention. I hope that in the future something like this could be offered. Sincerely, Kirsten S. Langsetmo Dear Kirsten, Some terrific folks out in the Portland, Oregon area are in the process of planning what will be the first national conference on high-functioning people with autism. They are looking at a date in September or October. Ill be sure to announce any and all details in the next MAAP. Perhaps they could consider your suggestion as a part of that conference. Susan ******* The Early Years of The Maap (p. 49) Dear Susan, This morning, October 1, 1987, at 7:52 a.m., Los Angeles experiences a 6.1 earthquake. Our home groaned and shook pretty badly for about 10-15 seconds. I was still in bed and my husband and sons were in the kitchen eating breakfast. When it stopped shaking, I went to the kitchen to assess the damage. Nothing had fallen off shelves, there was no smell of gas, and the lights and phone worked, so we were lucky. The next thing we wondered was how our daughter was. She lives in a group home in the San Fernando Valley, which is about the same distance from what the television was telling us was the epicenter of the quake, as our home. We were advised not to use the phone except to report damage, so we didnt call her. In 1971, when we had the last quake of consequence, she was still living at home and was quite fearful because it had awakened us all and she was sleeping in a waterbed that continued to slosh for quite a while! We sat together and waited for the aftershocks, but they subsided by the time the school bus came, and we all went about our regular routine. Our sons, who were 7 at the time, and I decided to go back to bed once they saw that we were all okay and it was only an earthquake that had awakened them! This morning, as we listened to the radio and television and my husband and sons prepared to go to work, the phone rang. It was our daughter. She was fine but was

concerned about whether her home visit, which was scheduled to begin this evening for 4 days, and which included her birthday, was still on. We assured her that we would pick her up after dinner, and that was the extent of the conversation. The amazing thing about it was that she called us, since in the 5 years that she has lived in the program, she had only called us a few times, and those occasions were to check on other home visits! We were elated that she called and seemed to be taking it all in stride. Long forgotten were the days when car trouble or heavy traffic or missing a freeway off-ramp would throw her into a tizzy. At 26, shes doing remarkably well in her group home, is working 20 hours a week as a secretary in the administrative office of her program, 4 hours a week as a file clerk in a nearby business, and 16 hours at the occupational training center. Shes too busy to call home and thats fine with us. We wonder if she would have called home if there had been no earthquake! Best Regards, Toby Arenberg ******* The Early Years of The Maap (p. 54) Dear Susan, Jimmy, 20 is enrolled in a regular adult vocational education center, in a computer course. It meets two evenings a week. He also works on temporary jobs, which can last anywhere from half a day to several days. By the way, temporary jobs are a great way to get experience and to build up good work habits. Because they are short assignments, there is not much at stake. In our area, jobs are plentiful. Many companies (factories, stores, etc.) make use of temporary workers to handle fluctuations in the need for workers. Jimmy has found the work entirely on his own. I had been urging him to see his counselor at Voc. Rehab, but he insisted that was not necessary. After some months of searching, filling out applications, and interviewing, he began to be called for these temp jobs. Susan Forthman
Dear Susan F., Thank you for sharing this wonderful success story with us. I think it is important to point out that many of our children would need some advocacy in order to experience success with this idea. It mostly depends on the individual characteristics of that particular person with autism. However, Jimmy is an excellent example that we must never say never when we assess the abilities of our kids. Susan M.

******* The Early Years of The Maap (p. 70) Dear Susan,

Theres a movie called Rain Man out. Im going to see it. Ive already read two reviews and the reviews stink. The general public has little understanding about autism. We high functioning autistic people have a duty to write the magazines and newspapers about this movie and the reviews and to set the facts straight. We autistics have a war to fight, and it is the war against ignorance. The war has started and we must win. We have to win! Kathy Lissner [Here is an article that Kathy sent to a Philadelphia newspaper that had contacted her after the release of Rain Man.] Declaration of War
On this day in Philadelphia, Jan. 11, 1989, I, Kathy Lissner, member of the Autism Society and representative of those autistics who cannot speak for themselves, am here to read this declaration of war. The enemy has misinformed the general population by having in papers, magazines and textbooks information that is inaccurate, old or stereotypical. The visual media for too long have played the cute little autistic kid who gets cured from the fairy from Disneyland or the person who can never be taught how to lead a normal life. As of now, there must be an unconditional surrender of the enemy. To do less is to ignore the fates of fellow Americans who suffer every day in the hands of those who know no better. Only by declaring war can we the autistic people of the Delaware Valley bring the message of knowledge and freedom to those who have none. Teaching what is the truth about autism is very similar to what our ancestors did when they headed West. By believing in the Manifest Destiny, they conquered a land and created a nation. We too are doing the same, but this time the land we are conquering is the ignorant mind, and the nation is the communities we live in. The 21st Century is upon us, and the state of a coordinated, nationalized information center about autism is in the worst of the Dark Ages. We the autistic people must be blazing the Oregon Trail. We have declared war and demand unconditional surrender.

Editors Note: I agree with many of Kathys thoughts. However, it is important to note that the Autism Society of America has been fighting this war on behalf of the citizens of the United States who have autism for many years. They are working very hard to establish a good, centralized center for information on autism. ******* The Early Years of The Maap (p. 151) Here is an update on how Ray Richards is doing. It was his contribution to his familys Christmas letter. Greetings: Here I am sitting in front of my word processor typing this letter. I graduating from Foothill High School back in June of 1987, and since then Im having trouble finding an appropriate job. I worked during my senior year at McClellan AFB, but as soon as I graduated from high school, and I was no longer a full time student, they dismissed me from my job. I didnt mind it too much that I was dismissed as that wasnt the kind of work Id want for the rest of my life. For the past year I have had an excellent tutor who

comes to my house and teaches me all there is to know about computers. I can now type resumes; term papers; manuscripts; business letters; etc., etc. The Department of Rehabilitation wanted to place me in a sheltered workshop with the retarded and of course I refused, as that is not an appropriate placement for me. Ive been home for over 2 years, however, I do some work here at home for people that need typing done from time to time. I do my own banking, shopping, laundry, cooking; so Im kept busy. In the meantime, my mom is working with an attorney from Protection and Advocacy to force the Regional Center into getting me a job in an office - working with computers, which is where my strengths are. The reason I use the work force is because my case worker at the Regional Center stated on my IPP (Individual Progress Plan) that the Regional Center would look for a job in an office. Hopefully by 1991 Ill have a job. Sincerely, Ray Richards ******* The Early Years of The Maap (p. 160-162) Dear Susan, This is my life story. Maybe you could publish it in The Maap. This story tells about what Ive been through. Laurie LaGoe This story is reprinted from the Potomac Valley Green Network FALLING THROUGH THE CRACKS An Autistic Womans Experience
On July 26, 1990, in a ceremony attended by about 2,000 disabled people and their families, President Bush signed the Americans with Disabilities Act, outlawing discrimination against the disabled in employment, public accommodations, transportation, and telecommunications. According to an article by Ann Devroy in the Washington Post, The President said a major goal of the legislation is to demonstrate that disabled Americans want to work to support themselves and maintain independence. (July 27, p. A18) Following is an account of one disabled Americans struggle for independence and dignity. Laurie LaGoe, a member of Potomac Valley Green Network, sent us a letter her sister wrote in 1981 to the president of the Pittsburgh area Autism chapter [A.S.A.]. and an update on her experiences since that time. Laurie new works as a groundskeeper for an apartment complex in Alexandria [VA].

Lauries sister (1981): Times have certainly changes since we first became acquainted with the term autism. Sixteen years ago, when my parents finally learned what to call the odd behavior of their five-year -old daughter, almost everyone, including medical/mental health professionals responded aw -what? Well, my parents did valiant battle with these professionals and with public school officials, and with everyone who was supposed to offer aid and comfort to parents confronted with a child who doesnt fit into normal patterns. They endured the barely

concealed intimations that they must be terrible people to have caused such severe emotional problems. Since professionals finished their jobs with diagnosis (often inaccurate), my mother patiently taught Laurie to read and to add and subtract, then managed to endure when Lauries placement in a class for retarded children almost obliterated those abilities. And Laurie endured. She endured special education that failed to address her special needs. She endured instructors who had so little empathy (after all, she could walk, talk, hear, and learn is shed only pay attention and try) that they punished her for staring at classmates in wheelchairs. She progressed sufficiently to be placed in regular junior high school. We were so proud and thrilled. She was proud and thrilled. She was also beaten, ridiculed, and outcast. As she struggled through junior high and high school, she learned to tolerate abuses that would send weaker people into hiding. Through experience after experience, abuse after abuse, she learned to cope with teachers and administrators who said, you bring it on yourself. She planned to work after high school. Her two older sisters did, and she wanted to. She didnt think the fact that she used to be autistic should stand in her way. She applied for lots of jobs she didnt get. She lost a lot of jobs she did get. Discouraged, she decided to join the Army to get job training and experience. They turned her down. Laurie and the rest of the family started looking for help, and in the course of the search found material describing the autistic adult. We all faced the fact that, although Laurie had made a spectacular adjustment to her handicap, she was and is autistic. She approached the Bureau of Vocational Rehabilitation for help finding a place in the world. The BVR counselor helpfully suggested that she stay home with the folks or get married. She complained. She was sent, at parental expense (she could have gone to Harvard for the price!) to the Vocational Rehabilitation Center in Pittsburgh. They eventually placed her in a halfway house for the mentally ill, and found her work in a sheltered workshop for the retarded. They just didnt know what to do for her. Her handicap doesnt fit in with their programs. Solution? Change the handicap. Laurie eventually placed herself in the Job Corps. She knows she is neither retarded nor mentally ill. She also knew a sheltered workshop has no promotion potential and that her chances of becoming independent if she remained there were nil. She entered the Job Corp, in the Maintenance (janitorial) program. After she was there about six months, she was given aptitude and intelligence tests. Lo and behold, they discovered she is bright. She is now learning telecommunications (telephone installation and repair). She feel pretty good about it. I dont. Of course, Im glad shes getting training. But at Job Corps, Laurie has been subjected to unbelievable abuseverbal assaults, physical assaults, sexual assaults. She was punched and suffered a broken nose. Corpsmen have exposed themselves to her and rubbed themselves against her. Four months ago, she was abducted and raped while out with friends. Through it all, the centers director said, You brought it on yourself. She brought it on herself because a very important part of her brain doesnt workthe part that interprets the thousands of social signals we give one another constantly. The part that gives us hunches about the feelings and motivations of others. The part that interprets smiles and facial expressions and tone of voice and posture and conversational pauses and touches. Her communicationher worldis totally literal. Its a handicap thats obvious and invisible at the same time.

My messagemy plea actuallyis simple: Dont limit your efforts to the problems of autistic children. Isnt there something we can do to help autistic adults with socialization skills? Arent there any job training and placement assistance programs? Dont we have any recourse when we encounter programsfunded by our tax dollarswhich are inadequate at best and brutal at worst? Laurie (1990): I left the Job Corps July 10, 1981 with not prospects for a job. Job Corps managed to place other people in jobs but I fell through the cracks. I couldnt control my emotions well enough, I bite my fingernails, so I ended up going back to VRC. They told me I could go back to their sheltered workshop. I moved back home for a month, then visited my sisters down here. I landed a clerical job at the National Autism Office in D.C. I stayed there for 10 months, then worked for the Forest Service for a total of seven months. Summer of 1982 I got paid minimum wage under the Young Adult Conservation Corps program. After that I was called a Forest Service Volunteer. I worked for the Forest Service while living off my savings. After that I moved back in with my parents. I was there seven months, then ended up back in Alexandria to job hunt. I held three jobs in 1984. I worked at the car wash where I met my boyfriend. I voluntarily quit the car wash to work at Cameron Station PX. That was both government and private industry. I got laid off two months later. They did not want to take the time to train me. After job hunting for two weeks, I landed a fast-paced low-paying job for a minority-owned cleaning company. I got laid off there after three months service because I could not keep up with their fast pace or withstand the pressure of somebody standing over me rushing me. While employed I was denied welfare and Medicaid because I did not have children. I was denied Social Security Disability and SSI because I COULD WORK. I was denied unemployment compensationthey seemed to be looking for a reason to deny me. I ended up dipping into my savings, then starving myself. I stayed in the Mental Health Institute in Northern Virginia for six weeks. Three months later I landed my present job. ******* Volume I 1992 (p. 4-6) Dear Susan, The story about Laurie LaGoe [Maap, Vol. IV,91] was very validating. I have never endured poverty and danger she has, but I have heard the words, Youve brought it on yourself. When I was 11 years old at a large hospital, I was taking medications, which gave me a spaced out look. Other kids would snap their fingers in my face and say Out of it Moran. Everybody assumed I was in fantasy. As if I was in an altered state of mind. I had fantasies, I still do. But when I was on the medications I was anxious and confused. That made me less alert and I felt as spaced out as I looked. I would have loved to snap out of it. That type of teasing diminished after I was taken off the drugs. When I was a teenager I was told by certain people that I was clinging to my illness and that I did not want to be helped because they had not succeeded in making my autism

go away. My psychotherapist told me that people chose to be mentally ill. In his opinion, all my emotional, cognitive, and behavioral problems were what I wanted. I dont think I ever really believed him, but I certainly got on a guilt trip. Some how in traditional treatment one should be able to think her way out of mental illness. It didnt work. I wanted to get well, whatever that meant. It got really alarming when the changes didnt come. I did go to public school and do things that made me look more normal, which did improve my caretakers attitude. But there was still this pressure-Its not good enough. What about the fantasies and inappropriate behavior? I complained a lot about getting upset about certain noises, babies in particular. I was told I LET it bother me. I was made fun of in public school and my therapist said You make them anxious. That makes them angry. They had a right to tease me because I made them anxious. It didnt matter that going to school made me anxious. I lived with butterflies in my stomach! My extreme anxiety and fixations set me apart and there were some weird things I had to do in order to tolerate life. While in public school I thought of the school building as a person and talked to it. I thought of the tower as its head and I sat on the front porch and looked up and talked to it. I did this when I was able to be in an area when classes were overlate afternoon, etc. I was always on time for classes and tried to be a good student. I was reasonably quiet in class and not disruptive. I did my homework. I attended college part time and did not fit in at all. I bought a yearbook and nobody signed it like they did in high school. They said people didnt sign them in college. I learned later that people did sign college yearbooks. Someone in my foster family was in college. They signed his yearbook. I quit college after one year. I am one of the lucky ones- at least I have worked for 21 years as a dietary aide in a nursing home, but I am getting burned out. It is hard to be around so many sick and dying people for so long. Its easy to forget that most old people dont get senile. I think that society is cheating itself whenever a smart autistic person isnt allowed to work. When they are good at something, they are really good. Anyone as brave and determined as Laurie LaGoe in a job that matches their talents would do twice as much work as anyone else and enjoy it. I am surrounded by normal people who are always wishing they were finished for the day. I often feel that way too because my job does not utilize my talents and interests. My biggest barrier is my autism itself. I need more effective treatment to control my anxiety and intrusive thoughts which undermine my potential. I am not able to function in noisy environments. Some things I would have to tolerate if I was to do the job I would be best in. If only people knew the reason why autistic people get upset so easily. Selfcontrol is much harder because there is so much self to control. Nobody could be well behaved if they felt anxious much of the time. Who would be cheerful if they felt like they did during a dental appointment (or whatever they were afraid of) everyday? I dont think most people know what extreme anxiety is like- or to have intense feelings triggered by harmless sounds, - and to live with no relief. And then there is the shame. Real physical problems, like being in a wheelchair, bring compassion. I have been punished a lot because of my problem. While in the mental hospital I was nagged constantly about my sick behavior. I had privileges taken away including the right to be with my own family. (Just being in an institution is punishment if the family is not allowed to visit when they please.) I realize that some

families are abusive and sometimes dangerous to an ill family member, but Im talking about a good family like mine. I am trying real hard these days to believe that I am just as good as anyone else, but I have a lot of shame. When people dont understand and have no background, they just dont believe. When I hear statements like, I dont let things bother me, from others, its easy to think that Im not as good as they are. I am glad that people know about autism now, and that those I know understand. Attitudes have changed. I can now draw pictures and write stories about traffic lights and people are actually enjoying them. When I was growing up, no one was willing to see talent in my imagination because it was part of the illness that I was supposed to give up. It was like my illness was a sin and I had to repent or else. It was like one of those extreme fundamentalist churches where they were so strict that no one was ever in good standing. My lifer changed when I finally got to have my own apartment in 1979, and I no longer had to live with a critical foster family. The social worker could have done much to help with me and the family, but he only met with us when he felt like it and stood us up a lot. Many conflicts could have been prevented if he was involved. He had no excuse. His caseload was small because he worked for a private hospital. I think that the foster familys attitude came from the general bad attitude towards mentally ill people. The hospital may have thought of me as one of their failures because they couldnt fix me. Id like to hear from anyone who has had a similar situation. Sincerely, Barbara Moran Editors Note: Barbara had agreed to be part of a medical research project at Yale University. She will be staying in a hospital there until March as part of that project. At the end of this letter Barbara wrote, as a post script, It is really scary tom go back to a hospital. I need all the support I can get. I also fell I should state for those few who arent already clearly aware of the fact, AUTISM IS NOT A MENTAL ILLNESS, it is a developmental disability. ******* Volume II 1992 (p. 6-7) Dear Susan, Thank you for publishing Laurie LaGoes story (Maap Vol. IV 1991). But I was sorry that Laurie didnt tell more about her life in the past few years. Shes an amazing woman. Laurie works as a groundskeeper for an apartment complex. She found that job by dint of her own determination and persistence, and has held the job for several years. I especially enjoyed hearing her talk about the variety of people she works with, from various races and cultures, and how important mutual respect is. The Autism Society

of Northern Virginia gave its annual award to Lauries employer in 1989, recognizing that his private company had succeeded where Rehab and the Job Corps had not. Laurie lives independently. She is active in political and environmental activities reflecting her own strong views. Last I knew (we moved away last summer), she was still with her boyfriend. She obviously has great affection for her parents and appreciates all they did for her during the long difficult years. Yes, Laurie still copes everyday with a disability we know is a never-ending struggle, and with people who just dont understand. She is still very vulnerable. But especially considering all she has been through, she is an amazingly independent, capable, self-confidant, and resilient woman who has every reason to be proud of her achievements. Suzanne Butcher ******* Volume III 1992 (p. 4) Dear Susan, Where I work as a part time stockroom person, they desperately need qualified technicians. They encouraged me to take the training, at my own expense. One again I excelled at the top of my class. And once again my list of credentials is long. I waited a long time to write this letter. Thank you for understanding, but Ive learned I have to pay my own way. [Maap offered to send him issues for free] I set aside 10% of my income. I continue to make progress. I am encouraged by the experiences others relate. Few can understand the situation with David [Miedzianik] and his mother. But when your finances are limited, such situations are facts of life, though they often go unrecognized. Steve Mitchell Age 50 Editors Note: Steve is referring to the much discussed issue printed in past Maaps about David Miedzianik of England, who became upset, hit his mother, and was arrested and jailed for some time before he was given psychiatric help. David has autism and both he and his mother have very limited financial resources. ******* Volume IV 1992 (p. 8) The American Dream The American Dream has been described by various people throughout our entire history. When the Pilgrims settled at Plymouth Rock to our present-day status, people have ascribed various ideas to the dream. I can relate to a person who came to this shore, to Dallas in 1964. She and her husband were from Canada, but the woman was from another country, and she was scared. Her

only possessions were a few goods and the high school knowledge that the nuns from St. Vincent De Paul Society gave her. But she put that husband of hers through Southern Methodist University to get a degree, and worked also, in the hope that her children would never be as poor as she was. She did have two children, a boy and a girl. But she suspected her older son had a learning disability. At first, she was scoffed at until the boy astounded the doctors. I forgot to say he read at 18 months old. He had temper tantrums and was afraid of others, but people knew this person had potential to be a human being. Though he had to spend his time in mental hospitals, at least our medical system was able to provide them without this boy having to suffer needlessly. You see, the boy is writing this article. The mother and father are my own, and it is through them, the doctors, and other people that I am a college junior at the University of North Texas saying an overdue Thank You. Andy Morrison, a high-functioning autistic person attending the University of North Texas (article is reprinted from the Dallas Morning News) ******* Volume I 1993 (p. 1-2)
Dear Susan, Tracy Asmussen, in the Vol. IV, 1992, issue inquires about the Feldenkrais Method. I wonder if she means the Feldenkrais Method, originated by Moshe Feldenkrais. It is a method of body movement, and there is probably literature on its applications to special populations. On the changing scope of diagnosis: my general impression is that children are being diagnosed as autistic who would have received other diagnoses before. Autism is not unitary. There are many degrees, types and causesand were still in the dark about most causes. (This, in response to a letter on page 5, Vol. IV, 1992) I got a kick out of how Christopher (Anna Beetchenows paper) is the family resource for the TV schedule. These special interests that our kids have, can be a resource. Im forever asking Jimmy, When did we get the microwave? and such. He has a memory like a steel trap. Over time, with each passing year in adulthood, weve noticed a broadening of interests, improved ability to deal with stress, and the same kind of growth in realism and practicality that occurs in normal adults. Any residual traits of differentness are not necessarily a drawback. When a person appears different, the listener automatically adjusts expectations and treats the person with more patience. Sometimes the different person can safely say and do what others might only think of doing; his comments, blunt in others, might be cherished as we cherish the cute sayings of young children. We always look forward to the MAAP. Sincerely, Susan Forthman ******

Volume I 1993 (p. 2)

Dear Susan, I always look forward to reading your fine newsletter and am especially interested in letters and articles about high-functioning autistic adults.

My main reason for writing to you is to pass on this information about the Feldenkrais Method for Tracy Asmussen. I knew I had heard of this years ago, so long ago that I was fuzzy about the details. I called the reference department of the local library, but they couldnt find anything on it. On a hunch, I looked in the telephone book, and lo and behold, there was the Feldenkrais Method in Arlington, Virginia. I called them right away and they told me Tracy Asmussen could write or call the main office at the address below for information and literature. Feldenkrais Guild 524 Ellsworth St. P.O. Box 489 Albany, Oregon 97321 Phone: (503) 926-0981 Fax: (503) 926-0572 An added note of interest: My 38-year-old high-functioning son had been taking piano lessons for many years from various teachers and wasnt making as much progress as I thought he was capable of, even though he was fearless at the 9-foot concert grand at the community college where he played recitals. Last summer, when he was in a keyboard seminar at the college, the teacher conducting it fearlessly had him use the pedal (which was what that particular seminar was about). What a difference in the sound of the music! When I asked his then teacher to work on pedaling with him, he refused saying it was too difficult. David is now studying with the seminar teacher and recently played, from memory, with pedaling, on the concert grand. Some of the other performers who had heard him play while he was studying with the old teacher were very surprised, and the head of the Music Dept. (who tried to discourage me from changing teachers) told me he had made great progress! Underestimation is the name of the game, isnt it? Best wishes for 1993 to you and The MAAP! Sincerely, Sarah P. Reese ******

Volume III 1993 (p. 12) Dear Susan, After being terminated from my job in November, I was absolutely unable to find employment in California so I moved to Colorado. After many years of classes and training and experiences, for about a month now I have been working at a part time, entry-level job I have always wanted. I would like to thank the person who described his difficulty handling everyday living necessities. Its a rough ride and we need all the help we can get. Frustration means most people dont like us. Its hard to accomplish anything. Plans dont work out. This is incomprehensible to everyone around us. And its so difficult and almost impossible to talk about. My truck and everything in it was stolen. Im sleeping on someones front room floor. Steve Mitchell *******

Volume I 1994 (p. 4-5) Dear Susan, The book, High-functioning Individuals with Autism, edited by Eric Schopler and Gary Mesibov, includes an excellent chapter, A Parents View written by you. I often use, from that chapter, your extremely helpful list, Advice for Others Who Care, but may I add one more suggestion: If you care, then please dont doubt the fact that many persons with autism can recover sufficiently to lead reasonably normal, productive happy lives. Now that my son, Brian, is 23 years old, and fairly successful in his pursuit of independence, I often receive comments from others which go something like, Oh, he seems so normal, he probably wasnt autistic to begin with. AGH-H-H! I dont know whether to pop them in the nose or cry. Usually I simply hold back my emotions and try to describe the hell we all went through for so many years. Why is it that even professionals sometimes doubt that autistic children can overcome and/or compensate for much of their disability?!? Im not asking for sympathy for those difficult years. I only desire recognition for my sons valiant struggle, so that his success might be an encouragement to other parents and their children in their challenging times. By validating Brians autism and subsequent successes, then we must also validate that some interventions must have worked. Was it his inclusion in the public school system?the summer music camps?his computerthe excellent professionals who cared for so many years?his friends?the vitamins?the medication? Was it all of these things and probably many other factors? Yes, I believe so. Perhaps it was the pain of his failures that made him tough. There are no quick answers, no fast cures, no universal remedies. Only a long, twisting road, with lots of setbacks and only tiny steps forward. Life was so unbearable in junior high, that Brian considered suicide. At 18 years of age, he could not make eye contact, and still had a difficult time understanding the subtleties of language and the complexities of social interaction. Today, he attends college and is very excited about a career in geography. Life is still not perfect, but last weekend he brought a new friend home: a lovely girl, the special kind of girl that you, as a parent, would choose for your son. They sat and talked and laughed and made plans. I left the room so that they wouldnt see the tears in my eyes. Perhaps this scene was so beautiful because I know how long it took my son to get there. Sincerely, Mary Anne Coppola P.S. I have just put together a booklet, Through a Mothers EyesA View of Autism, which is available by sending $3.00 to me at: 193 Berkshire Dr., Rochester, NY 14626. It chronicles Brians life from early childhood to age 23 and includes illustrations by a

local artist. I hope it will be encouraging and helpful to parents and others who are interested in high-functioning autism. ******* Volume I 1996 (p. 9-10) Dear Susan, I am writing in response to the letter by Marla Comm. She asked for responses from others who share her situation. We are a unique group. Some folks call us high-functioning some say more socially adaptable, but putting labels aside, we have above the norm IQs and either full-blown autism, autistic tendencies, or one of the other related conditions (pervasive learning disorders). There are two basic choices we usually end up choosing: denying the symptoms, so we can pass in non-autistic society, or we admit them and face discrimination, rejection, ridicule, to name a few. If we choose to deny them, we automatically cut ourselves off from any help that might be available, as well as a social life, where we can lay down our masks and relax for a change. No matter how high functioning we are, we still have some level of the following (limitations or challenges, not handicaps!). We function in some areas high enough to pass as normal (i.e. not handicapped) but lack the organizational skills to do so in other areas. For example: We all have some level of social dysfunction or discomfort, which of course affects our self-images. Many of us have coordination problems, perceptual problems, dyslexic type confusion, language limitations (except Aspergers people). We lack planning skills, and the confidence and attention span to carry through with plans. Many of us have attention deficit symptoms, that is trouble keeping our thinking organized and ignoring distractions. Many of us battle some level of either lost in space or lost in time problems. That is we have special orientation and body awareness problems or we dont have an intrinsic sense of time, either in minutes or months or both. We tell you when it has been 5 minutes unless we watch the clock. Most of us lose communication skills when under pressure, so we need advocates to prevent us from being taken advantage of. We often face difficulty doing such chores as house or garage cleaning because we have very bad cases of out of sight out of mind in other words if we put things away properly we either cant find them when needed or forget we have them and purchase more. The word that would describe 90% of our life is burnout or overload because we are always under such indescribable pressure that our systems lose their ability to function normally. We are often labeled as hypochondriacs because the pressure and confusion and guilt or shame of everyday life becomes unbearable and it comes out through our bodies instead of our emotions, which leads to another area of major confusion. Many of us cannot identify our own emotions so we tack labels on them according to the reactions we observe in ourselves. If we find ourselves holding our breath, turning red, shaking, and having trouble expressing what has upset us, we assume we are angry. Intrinsic identification is lacking. Many of us lack initiative (self motivation). We can tell someone what needs doing, but we cant seem to make ourselves do it. We are also subject to depression and it can be immobilizing.

We could sure use counseling, but by whom? Who knows enough about our group to be of real help? Besides that, many of us cant afford it even if we did find a capable person, and many insurances, especially H.M.O.s, wont cover counseling for autistic symptoms. There are even more areas where day-to-day survival has become the task of the day. Ive heard people say we are so lucky because our autism isnt enough to affect our lives - BOY ARE THEY WRONG! Being limited is bad enough, but being limited but able to see and comprehend what youre missing is a thousand times worse. I am in Marlas boat. Im able to pass, but Ive ALWAYS needed help, and am unable to find or afford it. Can someone out there help us? Sincerely, Geneva Wulf ******* Volume I 1997 (p. 15-16) I am Matthias - an autistic who manages a nearly independent life I am half Swiss, half German. I prefer to write rather than to speak, but more and more I talk to people and I like to listen to what they say because I understand them better and better. I am 27 years old now. I am autistic as I have been told I thought I was deaf. I couldnt understand what people were saying. It seemed peculiar to me. Still in kindergarten, I hadnt spoken. On the other hand I hummed and played all classical music on the piano, especially Jesus, Joy of Mans Desiring, composed by Bach. That music was in my heart. It was the first piece I had learned from a record before understanding music notes. One day my parents brought me to a doctor, one without a white coat. He put me in a room like in a cockpit and with earphones controlled my hearing with lots of high and low sounds. After that I had to listen to music which sounded terrible and awfully wrong to me. On the other hand, my hearing was better and better as if the music sounded better and better at length. What was more important, people didnt seem to scream as much as they did before. This doctor was called Guy Berard. I had to return to him twice, always after one year, in order to control the development of my hearing and to repeat the music-therapy. After this I started to speak a little. I could understand what people said, though not always the meaning of what they were saying. People talk so much!!! I have always been in normal schools none specialized thanks to my parents who paid private schools for me. In the past, people didnt know much about autism in Switzerland. I was in high school, but I couldnt take any mathematics. It was even more unreal than the other topics. On the other hand, I am gifted in languages I think of them as music the music of a nation of mankind. I speak German because my mother is half German, half Danish. She teaches German in an international school. I speak English because I have spent 2 years in an English-language school in England. I speak French because I was born in the French part of Switzerland (Lausanne). I had a lovely time in the English school because Anglo-Saxons are very tolerant towards people who are different, like me (as they are in most English-speaking countries, more than French-speaking ones). In the English boarding school there were a lot of foreigners

(Japanese, Chinese, German students) who couldnt understand a thing, so I was able to help them. I adore foreigners. I am in the conservatory of music to progress more and more and because I am gifted in music. Soon I will have to give concerts. I am preparing a very difficult piece. I also play for myself for hours and hours when I feel alone, or I write texts on the computer. I have just learned it. A few years ago, I decided to learn Judo. I had seen it on TV. People are obliged to touch each other, and it is very difficult for me to put up with that. But I have succeeded! I am a green belt. I take my time. Things go very slowly. Once I wanted to become a piano maker, but nobody wanted me. So now I want to be a good mechanic. I am very fine with my hands. Three years ago, I had finished my apprenticeship of precision mechanics in Lausanne. I have been working very hard because I want to have a job, like everybody else. I have to say it is very hard to find a job, even in Switzerland. I made a nice C.V. [resume`] on the computer. I had a nice certificate and a [cover] letter that someone helped me to write. I have written those letters by hand. My mother and I picked up all the addresses of mechanics from Geneva and from all the areas around where I live. We sent 128 letters since July of 1993! I tell you, that gave me cramps in my hands. Unfortunately, I received more than 80 letters of refusal. Nobody seemed to need me. Perhaps this is because I have only a practical apprenticeship and that I havent been in a professional school. I can work like everybody else. I am very conscientious and very tidy, my master [at school] said. I was working in a protected atelier,[sheltered workshop] as we say in Switzerland. I liked that, but I hadnt the feeling that somebody has to protect me. Finally I found work in a famous Swiss firm that makes measurement instruments. I was very lucky. Matthias Fischer, 1995 ******** Volume II 1998 (p. 2-3) This letter was written by Jennifer Overton. It is soon to be aired on Canadian Broadcasting Corporation Radios national morning program This Morning. Jennifer Overton is a Halifax, Nova Scotia actor and writer. She also teaches Drama at Mount Saint Vincent University. She is mother to a five year old high-functioning autistic boy. Last night I had a dream. I dreamed I was driving along a winding coastal road. All of a sudden a beautiful boy dressed in black and carrying a violin case crossed the road in front of me, causing me to stop. I asked him where he was going, and if I could give him a lift. He recited his address, an address Id never heard, and got in the back seat. I looked in the rearview mirror and a wave of panic rose in me at the sight of his composed angelic face, staring straight ahead. In spite of my unease, I knew that I had to help him find his way home. I began driving. Searching. I woke up, my heart racing. My son. My beautiful son: Tomorrow is your fifth birthday. My big boy. My child. Five years old! Dad and I are so very proud of you. We are madly in love with you, and we wouldnt want you to be any

different than you are. You are one terrific kid. Very special. And it was exactly one year ago today that you were diagnosed autistic. Autistic. Autism. That word still kicks me right in the stomach. It knocks the wind out of me as much as it did the first time I heard it a year ago, in the cold blunt way we were told of your disorder. Yup, its Autism, and its never going to go away. I remember feeling like all my blood had left my body. And I remember hearing the cold October rain slapping the window of the white, sterile psychologists office. Its one thing to harbour nagging suspicions; its quite another to hear the word AUTISM from the mouth of a professional, and to see it in black and white. No longer deniable. Inescapable. Lifelong. As much as we love you, its been a very difficult year for me and Dad. Who can prepare for such a thing? It has been a year filled with tears, grief, numbness, panic, desperation, fear, love, determination, and anger. A lot of anger. Anger at a family doctor who repeatedly dismissed my concerns about your development; anger at a medical system that put us on fourteen month long waiting lists, and after diagnosing you, ushered us out the door with nothing more than a wave and a good luck; anger that your neurological disorder is shrouded in mystery and stigma and the medical community offers no treatment. Im angry that I had to spend months reading, researching, desperately looking for information on how to help you with NO ONE to guide me; I wish we lived closer to my family; I wish there was something or someone to blame for this; I feel anger toward friends who have effortlessly developing children and still dare to complain; Im angry at having been given this huge responsibility; Angry because I can never rest! and yes, Im angry at you for not giving me back things like hugs and kisses-my dear, its very hard to keep giving when I dont get a lot back in return. Please try to understand. I know you cant help it, but that doesnt make it easier. But mostly, Im angry at myself. Angry and guilty for not having recognized the signs earlier, because early diagnosis and intervention have proven to increase chances of full integration into society. I wish I hadnt hushed my concerns. Im sorry. Im so sorry. For not listening to myself. And for not listening to what you were telling me. And when you were diagnosed, Im sorry for being sad. I want you to know that I am not sad about you, or that you are my son. Never. Its the world: Im worried about you in this world. Autism. It conjures images of a solitary, mute, rocking child. That is not you; it never was. But when I think back, and look at your baby book, I recognize what I now know to be the early signs. You screamed at the sound of tin foil being ripped. You stiffened when I held you. Your eye contact was not good. Instead of pushing toy cars around the living room, you turned them over and spun the wheels. Numbers, letters, and shapes were your favorite playthings. At barely two years of age you pointed to a small eight-sided window and said, octagon. Before the age of three you were spelling words with blocks. I recall being in the car and hearing you mutter, three, one, eighteen. That spells car. It took me a while to figure out that what you had done was assign the letters of the alphabet numbers in your head, and were spelling words with the assigned numbers. And your memory. Uncanny. Eerie. You sing songs after hearing them once. You remember where you dropped an elastic three years ago. You remember the minutest detail, and forget nothing. And yet you show little interest in playing with other children. Kids are loud; they move around a lot; theyre unpredictable. Not only must it be an assault to your oversensitive

senses, but you dont know the rules to that game; the steps to that dance. You dont know how to make a friend. You dont know how to play. Sometimes your literal mind offers up funny, poetic insights. Mom, the scissors are clapping. Mom, can you put your headache away? Birds dance in the air, tummies cry, and the gate is broke-it has not money in its pockets. Dad and I celebrate your uniqueness. But will the world? Will the kids in school call you a computer with no feelings? A robot, to be turned on in the morning and off at night? Will you ever be invited to a sleepover? Will you learn to be a friend? Will you ever hug me and say, I love you Mom. On good days I have faith that the world will be gentle. On bad days I just want to hold you in my arms and shelter you. My mysterious child in black, what is the road youre walking down? And where are you bound? Tomorrow you turn five. We are so very proud of you. You are working hard to learn the life skills you are going to need. We love you. And we will do everything in our power to help you reach your full potential and be the happiest person you can be. And while were busy teaching you the ways of this world, you can teach us a lesson or two about love, patience, commitment, and beauty. OK? Happy Birthday son. And thanks for choosing our road to walk across. Love, Mom ******* Volume II 1998 (p. 15-16) Now You Tell Me by Richard Schull Until June of 96 I had never heard of the word Autism, although I knew all about it. Driving along listening to N.P.R.s Fresh Air and the review of Temple Grandins Thinking in Pictures, was just what I needed to hear! In fact I had to pull over because I was crying (joy) so hard. I had a whole 34 years of battle scars, confusion, depression and desperation to show for a life time of hard work. After reading Temples book and Tom McKeans Soon Will Come the Light, I finally realized why grade school was close to terrible. I was always one step from special education. Gym class was a frenzy as I couldnt do jumping jacks (made for others fun), and I now realize the loud echoes inside the gym were scaring me to death. High school was better. I did Algebra One twice and still didnt get it. College has left me one course short of a degree despite trying that chemistry class four times. However things mechanical are first nature to me. I proudly drive a 235 K. mile care with 4-wheel disc brakes of my own design and manufacture. I spent most of my life trying to be an auto mechanic. Ive earned the strange reputation of fixing the unfixable and more than once left an expert clueless. Henry Ford didnt even understand the motor he built, it was a lucky accident on his part that it ran. If only I could deal with people better and handle the stress of a fast paced environment, as it was, I was lucky not to kill myself with my after-the-fact common sense. I remember a HUSH falling over our auto mechanics shop class as I proceeded to change bulbs in a shop light with the power on and the open filaments of the broken bulb swaying wildly.

Suddenly, I got the idea and not moment too soon! Ive had too many close calls and a lot of luck. My longest term employment was just over 4 years with a bus company and even though I started as a mechanic I ended up as a bus washer since it was more comfortable. I worked nights and weekends and often was the only one in the building. That peace and quiet made the job. However, I did accomplish one very important job much to the dismay of my boss. Some of our bus fleet suffered from major fan belt trouble, sometimes as many as three buses per day would be towed in. The lead mechanic (my boss) had attempted every repair a mortal (forgive the attitude, please) could dream of and proudly announced to the world the problem was solved: in reality he was grandstanding and his cure, a new fan belt at every oil change. I took it upon myself to solve the problem. I devised my own test method that basically painted the fan belt and as the paint wore off its wear pattern could be read. The result was the belt was running in a rainbow pattern vs. Flat as intended. A few pulley changes or the return of the original factory system was all that was needed. I reported my findings to management officials and received no acknowledgement at all. However, through the proverbial grape vine, I learned the boss and the lead mechanic split a $2500 bonus offered by the company who made the bus for solving the problem. When I asked the Lead mechanic about the rumor he responded, who would believe a faggot like you could fix more than a basket of flowers. Sadly, he was right some of my best work was shot to pieces simply because I was gay. Alan Turing inventor of the Enigma machine during W.W.2 gets little credit for his key that broke German codes. He was well on his way to stardom until he was found out. I believe Mr. Turing to be Autistic as well. As for being gay, it saved my life. For those who know about being gay youll realize the coming out process is very demanding and rewarding. No one chooses to be gay just like no one chooses Autism. The benefit to being gay in this case is the people I dealt with were different too. Many lost the love of their families and discovered what struggle was about, thus making acceptance easy. I fit in well. Experience and emotions play a big roll in how one perceives the world. Someone who grew up straight and normal and only knows different as the same old thing in a new color, find real difference intolerable. They have never experienced it themselves so they run. I once read in an Autism book that was for the most part too technical to read easily that a greater percentage of Autistic people turn out gay than the average population. For those of you facing this challenge it is an easy hurdle in relation to a life time with Autism. A group called P-flagParents Friends of Lesbians and Gays helps many with the coming out issues faced by a family member and their parents. After reading several issues of the Maap, I consider myself very lucky. My heart goes out to the parents and other children of an Autistic person. Such an intense parenting experience is for sure deserving of many unrewarded Purple Heart medals. Though they fail to realize it, childbirth is the hardest experience of their parenting careers for most people. Please dont give up on your child. If their progress is like mine was, it will be unpredictable. It was 7th grade before my pictures started making sense. Often I understood the concept that was being taught long before I could express it. That isnt all unlike today when I practice a potential conversation before its presented. No so ironically, I figured out quite a bit playing with my Etch-a-sketch. Unknown to my teachers and parents the closer and more personal they were, the less I could do. One of the best parts of growing up were my dogs. I could

actually get close and hug them. They were the perfect listener and were always glad to see you. The responsibility of the pet made for a good learning experience as well. Today I find myself in the middle of something big or lost in a new world in terms of my backwards Autism experience. I figured out the world doesnt think in pictures and find myself intrigued by normal thought what ever that is. In the meantime, Ill make the best of what Ive got. By that I mean little tricks. First of which is a-b-c order everyplace in my life, by workshops and my Autistic thoughts as well. I now start my thought process with a flash card of the first letter of whatever it is I need referencedM-magnet found in small bins of back shop. This ordered approach makes thinking faster but I still have yet been able to keep up during normal conversation. If only the Periodic chart was in a-b-c order chemistry might have made more sense. Day to day life has found me wearing an almost socially acceptable back brace similar to those worn by employees in a lumber yard as my pressure relief valve. For what ever the reason, my picture-in-picture of late has been in the upper right at times and, as always, deep thought completely cancels the physical picture a normal person would see. Maybe that is the Autistic gaze a parent sees. Editors Note: Richard and other readers concerned with gay and lesbian issues may want to contact the TASH Sexual Orientation Interest & Action Group. Contact Ann Heler at (313) 579-1008 or e-mail: helera@mail.wcresa.k12.mi.us ******* Volume III 1998 (p. 4) Susan, I feel so good that just tonight we had a HOUSING AND COMMUNITY SUPPORT meeting and it was a big success. I was able to gather all of the agencies on Long Island [New York] that service the GFA/AS/PDD population (or plan to). Fourteen agencies enthusiastically attended this meeting and 40-50 parents heard their presentations & received their handouts. The parents shared their needs at the end and the agencies responded. The meeting lasted from 7:30-11pm. They really care. The agencies are doing a wonderful job. The big message that we got is that we have to get involved with legislative action in order to get the state to provide more money. We handed out sample letters and legislators names & addresses. The waiting lists are so very long for services no matter what kind. Of course if you make a lot of noise you can get help sooner Do you find this to be universal? For my son Michael, I would like a house with 3 or 4 other young men and assisted living. Someone who would encourage & supervise the after work social activities. That isnt going to happen very soon because we arent in a crisis situation (were not in our 70s or 80s, hes only 25, works (drives himself to work) and he currently lives at home. What about the fact that hes lonely? Hes a 25-year-old that could use some activities and socialization in the evenings with someone other than his parents. He needs a circle of friends, mentor or whatever. Hes fortunate to have a mentor that he sees once every other week for years now. Spending time with his mentor makes him so happy. It lights up his life. He could use more. I could go on and on but I dont want to bore you.

******** Volume III 1998 (p. 6-8) I received Volume II of my newsletter the other day and have finally gotten around to reading it. The letter from Jennifer Overton was wonderful and it really touched me, as do so many of the articles you print in the Maap Newsletter. Unfortunately, I was somewhat disappointed in the article you printed, Now You Tell Me, by Richard Schull. It is a sad day to think that being gay can save your life. Having autism is such a hurdle by itself, why in the world would you want to complicate it by choosing the gay lifestyle, which makes being accepted twice as hard. People with autism think badly of their selves a lot anyway and have a hard time being accepted, encouraging this lifestyle makes no sense to me at all. Then at the end of the article you put a phone number and e-mail address for the TASH Sexual Orientation Interest and Action Group. Some people who have autism may think, Wow, these people and their ideas will help me and they will be accepting of my ways and who I am. This is just so very distressing. I am not a gay basher and try to be very accepting of anyone with problems they cannot help or couldnt prevent, but Im one of those few who thinks that people who are gay are DEFINITELY not born that way. With the morals of our nation going down the tubes faster every day, I have to teach my children what is right and wrong because the accepting outside world where nothing is black or white accepts everything. Even though my daughter has many problems, I still try to teach her the truth, even though she may not understand it completely. Yes, I am a Christian; and yes, I do believe the bible is Gods Word and it is inspired by God and every word of it is true. He teaches us to love the sinner but hate the sin. In Romans 1:24-32, it tells how people who quit trusting God and seek their own ways, fall for foolish ideas and concepts. God gave them up to every sort of sex sin, man with man and woman with woman. This is an abomination to our Lord and Savior. So I am begging you please not to advocate this kind of lifestyle by printing phone numbers and addresses of these kinds of organizations. This is the first time I have ever seen this in your newsletter, so I guess it just kind of took me by surprise. You definitely have the right to believe whatever way you want on this issue or any other issue, but when you print it in your newsletter with thousands of mixed up souls reading it and searching for help here, there and everywhere, you have to think twice and know if that is a responsible thing to do. I hope I havent offended you in any way and you may think Im way off track, but I just felt I had to let my feelings be known on this. Thank you for all the wonderful work you do and all the help and hope you give to people with autism and their families. P.S. I had my husband read the article and give his opinion of it. He thought the issue was really dealing with the gay lifestyle rather than dealing with autism. We think your

organization should not be a spokesperson for the gay lifestyle, but rather stick to the real issues of autism. Thank you for your time in reading my letter. God Bless and Take Care! Editors reply: Dear Beth, Please be assured that Maap is not trying to advocate for gay or any other lifestyle. We print letters that are about issues which come up frequently. The issue of gays with disabilities is a widely discussed topic at this time. It was very hard for me to put that letter and referral in Maap. However, I did it because I dont think I have the right to preach to anyone. I simply try to present the forum for these issues. If you read the article the way I (and my Advisory Board) did, you would see that I was not trying to condone the gay lifestyle. I was directing people who wanted info on coping with both being gay and being disabled to a source that does deal with this issue. Like it or not, it comes up more than you think. I dont claim to always be rightjust doing my best. I have no desire to put any articles that refer to anything involving sex or sexual orientation in Maap because Im just plain, uncomfortable with it. It is not my area of knowledge and expertise. I hope I have done the right thing, but either way, I promise you I have done my best. Sincerely, Susan In response to Susans reply, Beth wrote: I truly appreciate your response to my E-mail I sent last week. Your response was most gracious and honest. I know you are in a very difficult position dealing with so many different people from all walks of life. Sometimes or a lot of times in life we have to take an unpoplular stand, but if we truly believe in something, whether it deserves praise or criticism, we need to let our voices be heard. When we found out our daughter had a lot of symptoms of autism, they said the first thing to do was get her in a preschool with regular kids so she would have GOOD ROLE MODELS. All through her school years we were told to get her mainstreamed almost from the very beginning and picked up a lot of good and bad from the regular children. So as you know (and I know I dont need to tell you this), people with autism are influenced greatly by their peers actions, words, etc. My daughter would come home from high school saying some really bad words, which we never used in our home, and she said all of her friends did it and she wanted to BE LIKE THEM. So I am just saying I dont think it helps to put these ideas in their minds or give them information where they think they may find help or acceptance if they have feelings for the same sex. Is it really going to help or just CONFUSE their lives more??? They want to be accepted so much, but I think the gay lifestyle would just throw another wrench into their lives. You are great! God is using you and the special people who help you in such a magnificent way. Do you realize how many lives you touch? I wish your newsletter came every week. God Bless and Take Care!!!! Beth from the Midwest

******** Volume IV 1998 (p. 11-12) End of the Autistic Line by Mark Bishop With the mind of a child, aged 37, I wondered what I will do when my parents die. I suppose all families with autistic children must ask themselves this question from time to time. Children after all grown up, become stronger and more active, while parents by the nature of things must inevitably become less able to cope. I was one of the lucky ones, able to respond to my parents help and benefit from the remedial education which gave me a life. Others however will always need care and attention throughout their lives, and in most cases long after their dads and moms are dead. Even now, I too sometimes need help and tolerance by the community, so that I dont get kicked out of the local club while line dancing, (which I love) because I was uncoordinated, or told by the local university, we dont play his sort of music. I do have feelings even if they cant be expressed, and it is hard to defend myself against peoples ignorance of autism. I can only say Im doing my best and learning all the time, thanks mainly to fate. If the teaching enables me to live normally, I will have made it. Otherwise, even though I am a concert pianist, a pilot and can write well, when my parents have gone, I too will go into care. Its life Jim, but not as we know it, but I hope because I cant talk properly, you dont put me somewhere too hidden from society. ******** Volume IV 1998 (p. 14-16) Hi Susan, I want to say that Jasmine ONeill knows what is TRULY going on in the world. She was able to use her own experiences living with HFA (high-functioning autism) to make excellent observations. For instance, autistic people are still being thrown away by society. I agree with it 100 percent. I, personally, was born in Hampton, Virginia, on Sunday, September 20, 1970. I moved to Ladson, South Carolina after I was released from the military hospital in Virginia. Right now, I attend UIC (University of Illinois at Chicago). By two-and-a-half, I was still not talking. At that time, my pediatrician suggested that I get a hearing check-up and the results were inconclusive. My hearing was normal, indicating that I could hear the opening of a Coke can or a cookie jar lid from across the house. My family, unfortunately, was not willing or able to find ways to cope with my condition. I have tried everything to get them to have a feeling of what its like to live with autism (or Aspergers). My parents FORCED me to go to Southern Illinois University in Carbondale because of Disabled Student Services and nothing else. And I have not talked to them since my move to Carbondale in January, 1993. I felt that they did not want to deal with me anymore and took me to Carbondale before moving over to the Philadelphia area. My parents also told me that it was in my best interest to go to school at SIUC. I found that

Carbondale is such a coercive, prejudicial city that has no interest in college students. I recently transferred from SIUC to UIC this past August of 1997. I seem to be much happier here in Chicago although I still seem to have a few problems not being able to have social experiences that most other students would have by now. Socially, I feel much more comfortable if people coming up to me start a conversation than me doing that. If I try to approach people to start a conversation, I feel like I might do it too much. I admit that I have little or no clue on whom to approach to sart a conversation and where I should do this. When I started high school, it was bad. I was teased pretty much every day and called really derogatory names like egghead, dummy, retard, and nerdface. One time during my freshman year in high school, I almost took a nasty fall down a stairwell. Two or three boys were trying to play a prank on me and for whatever reason I dont know about, I was able to see it coming. Imagine falling down the stairs, I would have been in such tremendous pain that I would scream and cry. As my high school career went on, students were starting to do a much better job of accepting me. For instance, I won the Student Council award for being the student that gave the most commitment and dedication to Morris Community High School. I got this award during my senior year. The students gave me a standing ovation when I won this award. They noticed that I get emotional with wins and losses in games of sports like basketball and football. During senior night, during the last football and basketball games of the season, I was cheered by the students. It made me feel like I had a fan club without me knowing it. My 1989 high school classmates were very supportive of me during my senior year. At the end of commencement, I started to burst into tears, both sadly for knowing Id graduated, and tears of joy knowing also that the boys who teased me were now beaten. Because of my autism, it was a great deal of hard work to be able to go to high school and leave with a diploma in hand. From research Ive been hearing about, only about 5% of students with autism who start high school are able to go all the way and graduate with a diploma. College, though, has been a very rocky road. I did well at Joliet Junior College, but I was one class short of getting the Associates degree. I was frustrated that my parents did not allow me to return to Morris, Illinois, about 20 miles west of Joliet, that summer of 1993 to take that one class. To me, they mentioned coldly that it was my fault that I was one class short of the degree. My frustration was compounded down at SIU because there was absolutely nothing for me there. They do have programs for people with severe disabilities like the Living Center from Evaluation and Developmental Center (EDC), but these are not right for me. There are students, disabled or not, that dont know how to do the laundry or cook. I feel that society is singling out the disabled person way too much. To me, society feels that its always people with disabilities that dont know how to do things. One thing is for sure, thats big-time baloney. I have come across students, even the normal ones, that dont know how to live. As of now, I presently live in the dorms. To me, thats the only type of environment that I can afford. I use financial aid to help pay for my college expenses. I have been trying to get SSI for about five-and-a-half years and I have not had success with it. Maybe my fortunes can take a positive turn for the better. My DS advisor, has been helping me not to worry about the books Ill be needing for classes this fall. She told me to write down all the books that are needed for the class and the name of the class these books will be used in. I have been keeping track of the amount of money I will have saved so far this summer, into fall,

and the start of 1999. I have saved a total of $629.95. Its the combination of books that I already have for fall classes, and reduction in certain expenses as well. After reading the MAAP newsletters, it seems to me that the autistic persons who have their essays published have much more ability to see the world with more feeling than most other people do. I look forward to attending the MAAP conference in Indianapolis in April 1999. In closing, I want to say that the boys who teased me early in life thought they were going to beat me. Not anymore. Christie, one of the officers I have been able to reach, mentioned in a letter to me that I should not worry about them. Since those boys were only interested in picking on other kids who are different from the rest, including myself, they will definitely see their lives go down the toilet in the end. These are the people that need the most help in accepting other people who are different than they are. There is a saying that can be applied here, What goes around, comes around. I firmly believe it. To all people with mild autism, PDD, and Asperger, I want to say that you are my brothers and sisters. You are much better people than a lot of NT (neuro-typicals) are. If any of you want to reach me, my address is 700 S. Halsted - CMN 5104D, Chicago, IL 60607. My email is: lrich1@uic.edu Thanks for providing support to me, and other people with autism that have written to you. Lyndon Mike Rich ******** Volume I 1999 (p. 13-14) Dear Susan, One or two points I feel the need to elucidate. The first is from the sound of it, that I am probably a lot less challenged than your daughter in some respects, as I have never needed help in the day-to-day running of my life, since I first left home. The second is, that this independence issue is deeper and more complex, because it really does bring in such matters as ideological issues. Many people of my generation reacted against what seemed to be the narrow-mindedness and materialism of our elders. I still do not think that what I chose to do with my life earlier on was not so very unusual, when seen in context. Before I left [England], I was very much part of a whole scene of struggling artists, actors and writers and in this milieu, it is more or less acceptable to pursue creative activities whilst being subsidized by the dole. Even Tony Blair, who is determined to usher forth a brave new world of workfare for all welfare recipients, has had to accede a little on this one: now actors and musicians, as of old, will be allowed to rest, ie., sign on [to welfare] without being hassled whilst between projects. Sure, I was a mixed-up kid when it first came to graduating and signing on, as I was not exactly brimming with confidence about my employability in such a daunting situation just like a good number of other people, who had been thrown into similar situations. As time went on however, my talents continued to develop, and I got to participate more and more fully with groups of other artists collectives, societies etc, organizing exhibitions and other events. We might have been signing on, but we were never lazy.

My parents, being very much of the old school would never have approved of [accessing the welfare system], despite the gravity of the economic situation. I was not working, yes, rather mixed-up in some ways, but do not believe that they needed to continue to exhume my history in the face of this, to quite the degree that they did. I do not like the way they continue to do this every time I do something they do not really approve of. One thing they have a bee in their bonnet about for instance, is the way I dress. They read something about Aspergers in 1993 and have decided that being a Goth [dressing all in black, etc.] is autistic. Failure to empathize with the right people in Society (in any case, I never wear black lipstick at interviews). I should think that everyone now who has ever lived an alternative style, ought to be worried. Russian dissidents [are an example.] In any case, I do believe that everyone, once they reach adulthood, should be respected as adults, which includes the right to holding their own opinions and beliefs, even individuals who may in fact, be that much more challenged than I am. It was actually one of the more autistic things about me, which compelled me to seek total financial independence than the other way around; unlike the other struggling artists, actors and writers that I knew, I simply could not accept the new powers the government now has here, to coerce unemployed people onto compulsory courses, take part in workfare schemes, etc. Situations which create dependency mean that others have the power to control you, so as far as I am concerned now, unemployment, especially long-term unemployment, stinks. I did place myself in a dependent situation with my parents, after they offered to look after my stuff after I moved abroad, and perhaps it was not a good idea to have stayed with them over the summer holidays, considering how much history there is between us: sadly, it seems I was right to have these reservations. Maybe in the end there is simply too much unfinished business, because of the trouble they had with me as a child: they will just never be able to see me beyond that. I do think that it helps if any parent can accept their child as they are, and not to hold rigid expectations to what they could, or should have been. Well, that is it for now! This must be a relevant sort of letter to make right now, if you have already covered an article on fallouts between parents and Maap challenged children. Best wishes again Anonymous from England ******* Volume IV 1999 (p. 14-21)
SUPPORTED LIVING AND SUPPORTED EMPLOYMENT By Bernice M. Singer Introduction Stanley and Toby Arenberg of Los Angeles have a daughter, Ilene, who is a high functioning individual with autism. Toby is the editor of MOMENTUM, the publication of the Los Angeles chapter of the Autism Society of America. When I was the editor of the

journal, MIFGASH, published for the benefit of parents and professionals in Israel concerned with autism, Toby and I exchanged publications, and became friends. Through E-mail she has been infinitely helpful in keeping me abreast of the latest developments in the field of autism in the United States. I asked her to share some of her insights on the subject of Independent Living with me. Toby: Of all the people I know in Supported Living, as it is called here, very few have reached Ilenes level. Most of them have 24-hour seven-days-a-week staff. They may have part-time jobs, or do volunteer work, or no work at all. Some attend classes; but most just hang out, filling their days with whatever strikes their fancy and/or whatever their staff can get them to do. Too many parents have very low expectations for their kids. This idea is based, of course, on the fact that the rest of the world has low expectations for people with autism. Bernice: What leads you to believe that the rest of the world has low expectations for people with autism? Toby: Well, think about it. How can you expect people who spend a lot of time in selfstimulatory behaviors, e.g., flapping their hands, covering their ears, twirling themselves or objects, making sure everything is always in the same place, rocking back and forth, picking lint off the floor, smearing feces, laughing at nothing in particular, zoning out, having tantrums, insisting on sameness, etc., etc., etc.to do anything productive? Without the will or the tools to reach them, to understand them, most were considered unteachable. Yet some people had the knack, developed the tools and skills, and discovered that in spite of these difficult behaviors, there was a real person in there! There was someone who really wanted to be liked, really wanted to fit in, really wanted to have friends, and really wanted to learn. On top of that, those who persevered and introduced alternative means of communication, who were patient, found that in spite of the behaviors and/or lack of communication, there was learning going on, after all. I often hear parents say how surprised they are when their child does something they never expected him or her to do. Bernice: Is Independent Living, even for high functioning adults, really possible? Toby: It depends upon what you define as Independent Living. I know a number of adults with autism who do live independently, with various degrees of success. I think the issue has to do with self-esteem, and whether the individual can ask for help when he/she needs it. Personally, Ive never lived alone (I lived at home through college and teaching and then got married); but all three of my adult children live alone. Ilene couldnt make it without support several days a weekboth by staff and us. As I explain to Ilene, even though she seems to like being alone at times, everyone needs other people in their lives. Autism is a pretty isolating disability. Left to their own devices, individuals with autism can sink into a pretty low level of living, especially when it comes to the details of life (like food in the refrigerator!) I think its necessary to define the term independent as a preface. I would define independent as being able to make pretty good decisionslike knowing what mail is important, and responding appropriately; being able to live within your income; keeping a relatively clean and safe living environment; making wise purchases; dealing with strangers in an acceptable manner; taking part in community activities; planning for and traveling alone; being able to fix things around the house; enjoying leisure time activities. Bernice: Thats quite a mixed bag, and I think it is a very personal one. There are many so-called normal people who wouldnt qualify if they were expected to fulfill all of the aboveand yet they are living independently. So, lets examine some of your requirements.

When you think of Independent Living, you think, first of all, of housing, or, as you put it, a relatively clean and safe living environment. Lets begin with what I know of solutions to the problem of housing, especially for people who suffer from autism or, as they say, related disorders. At first, institutions were all that was available to those who were either too disturbed to remain at home, or had nowhere else to go. They were usually placed in separate wings of mental hospitals or in their locked wards. Sometimes these became horrifying snake pits. It was tragically obvious, both to parents and professionals, that there had to be a better solution, especially for those who were not so severely disabled, who could care for themselves, with some assistance. Their first answer was hostels. It was thought these could provide for a more humane atmosphere. Establishing them wasnt easy. Often, after struggling to find the money to buy or rent a place, the organizers had to contend with neighborhood resistancethe NIMBY (not in my back yard) syndrome. Later, after the hostels had finally become established, it was discovered that there were other problems. Perhaps the most difficult of these was that of frequent staff turnover. Staff, although often devoted, was generally poorly-paid, and worked long hours. They frequently suffered from burn-out. On the other hand, individuals with autism suffer from any kind of change. Hostel members found frequent staff turnover very threatening. Another difficulty was that when membership in a hostel was limited to a single disability, it was often difficult to find enough candidates who were of similar age and degree of disability. Sometimes the reverse situation came into play: the hostel became a kind of catch-all for a number of disabilities. To the surprise of the management, this sometimes would work out well: some disabilities, such as mental retardation and autism, were found to be both compatible and advantageous for both. Finally, most hostels were perpetually in financial trouble, unless, as sometimes happens, a grateful relative made a generous endowment The third kind of living arrangement to be developed was group homes. These were generally a luxurious step upward from hostelsbut their problems were basically the same. My husband and I have visited a number of group homes, from Maine to North California. Although they were often initiated by parents, it is usually necessary for them to have some form of institutional support. This can be provided for by either the State or privately, by an organization, such as the local Autistic Society. As with most forms of disability housing, there are usually not enough places to fill the demand; and they vary widely in excellence. There is a fourth form of housing which is more unique: The Village. Kfar Tikvah (Hope Village) is near Kiryat Tivon, where we livemidway between Haifa and Nazareth, with a spectacular view overlooking the Valley of Jezreel and the Carmel Mountain range. It was founded about 35 years ago, on the site of a failed kibbutz, for the benefit of mentally retarded adults. There was one basic requirement: each member was supposed to be able to work, and to care for him/her self. In recent years the membership has been expanded to admit persons with autism and other developmental disorders. There are also some with physical disabilities. Kfar Tikah has sufficient land to support charming cottages for about 135 men and women. Each cottage contains two or four apartments. Each apartment consists of two single bedrooms, a small living room, a kitchenette, and a bathroom, with furniture and decoration at the choice of the resident. Some haverim (Hebrew for membersa kibbutz term) live as couples, both in the Village, and in apartments rented for them in Tivon. Work is provided by means of: a plastics factory, which fills subcontracts for a much larger plant in the Upper Galilee; a dog kennel; a plant nursery; the Village kitchen; the

Village offices; and the Village grounds. The plastics factory is so successful that Management has instituted a second shift, employing Bedouin from nearby villages, who work alongside the members. Some of the members work outside the Village in nearby towns. Both the Village Management and the Tivon town government have made an effort to make the Village part of the larger community, although there is much more that could be done. Public school teachers are encouraged to take their young students on hikes over the property; members take part in synagogue services; there is an annual Chanukah party, where people from the outside are invited, etc. Still, earlier prejudice, when the Village was thought of as only a repository for the mentally retarded, does remain, although it is slowly being dissipated. Although Tivon may be reached from the Village by a vigorous hike, transportation is sometimes provided by volunteers driving the Village van. These volunteers are young Germans doing National Service in Israel. In addition to chauffeuring, they also help out with recreation programs. There is also a public bus which stops twice a day. There are community buildings, such as a dining hall and kitchen, club house, synagogue, occupational therapy rooms, music rooms, offices, a swimming pool, and other recreational facilities. Dental care and medical care, including a nurse always on duty, is provided. Apart for checking-in and checking-out at the entrance gate, largely due to Israels security situation, members are totally free to come-and-go. They are well-accepted. They all shop in the towns stores. Many, who still have families to go to, go home every other weekend; Jonathan, like most single Israeli men, comes home almost every Friday night. There is a staff of social workers, each with a large number of clients. It has been our experience that the squeaking wheel gets the grease. When problems arise, the social worker is available. Which brings us to the question of money. Kfar Tikvah is probably the most luxurious facility of its kind in Israel, and is arguably considered the best resource available for someone with Jonathans problems. There are drawbacks. In order to enter, one must pay the equivalent of a modest apartment. Since most Israeli parents try to provide apartments for their children, this is not unreasonable. However, this investment is amortized over 10 years, after which nothing is left. In addition, one must make a monthly support payment. For Israelis, this is covered, in large part, by National Social Insurance. (There are a number of members who came from outside of Israel, such as Argentina, Ireland, and France). Parents or guardians must also provide spending money, which is doled out by the Kfar Tikvah treasurer. Members are expected to work. There is no compensation, except for an occasional treat, such as an excursion. No one receives any money. Jonathan, for example, must work a night shift (3 p.m. to 11 p.m.) one week every month, in addition to his regular shift from 8:30 a.m. to 3 p.m. every day, six days-a-week, with Friday a short day. Admittedly, he gets a generous amount of time-off for vacations and excursions. He now also gets a small bonus for the night shift work. Jonathan was happy living at the Village! He is now living independently (with a partner) in an apartment in Tivon, supervised by a social worker. He continues to work at the factory, and enjoys the facilities of Kfar Tikvah, such as its social affairs, like folk dancing and disco, ceramic class, music club, swimming pool, dining hall for lunch, and so on.

****** Volume II 2000 p. 14

Dear Susan, I was thinking that it was time to write to the Maap again. Now that we are in the 21st century or very close to it, I want this new century to be the century of autism liberation. We need to be liberated from the myths and stereotypes that are thrown at us by neurotypicals. Most of the work will have to be done by people with autism, but we can use all the help that we can get. What I would like to see by the end of the 21st century is no more treatments to fix or cure autism, but the love and acceptance of us as God made us. I dont want to see anymore sheltered workshops, group homes, or institutions, but real jobs, life in the community with or without roommates and involvement with the community as much as the individual chooses to, and respect and dignity for all people. Research should be used for education and understanding, not fixes, cures, and degradation with respect for all people. I want to see all organizations in the autism field be truly headed by people with autism. Who knows autism better than us! I want to see us described by our strengths and talents, not by our weaknesses like any neurotypical would be. It is time for the Autism Liberation Movement! Help us in our struggle to be respected and to gain our dignity. We have the right to live our own lives in our own way, not anybody elses way!! Sincerely, Jean-Paul Bovee ******** Volume III 2000 p. 11-12 Editors Note: We often remind parents, professionals and people in law enforcement about how easy it is for people with autism to have negative interactions with the law. The following letter is another tragic example. Steve Mitchell has been a subscriber and contributor to Maap since our earliest years. RE: INDEPENDENT LIVING /IT COULDNT HAPPEN IN AMERICA (Besides I have a college degree) Dear Susan, I appreciate the Maap; it is my link to reality. My mother, advanced in age, and concerned that I would not have to continue to live in a travel trailer in Wyoming, added my name to her house and bank accounts when I became her caretaker, as she was no longer able to take care of herself in California.

With problems with neighbors disturbing the peace all hours of the night, and police who were their friends I replaced the house to a better area. Relatives, including an attorney, actually kidnapped my mother, jailed me, and obtained conservatorship for my brother in Portland through false allegations against me. I tried to deal with kids that trespassed and harassed me in the new neighborhood, and parents filed criminal charges against me. Through my church I met and married a lady from South America who wanted only to gain entry into the US, and left after three months. Almost everyone in my life has turned against me, including the church upon which I relied heavily. I was unable to obtain help, despite desperate efforts. I commute two weeks at a time from California to Portland by bus to help my mother who is 93 years old. So this has been my experience with INDEPENDENT LIVING. And I continue to struggle with lack of social skills. Ive survived. My communication skills have improved. [My medication] helps. Thank you very much for your interest. Steve Mitchell (661) 822-4690 1375 Arabian Dr. Tehachapi, CA 93561 ******* Volume I 2001 p. 7 Dear Susan, Thank you for the referrals, and thank you for your very effective newsletter! I have an idea or two that would help the Autistic community directly! Here goes How about starting referral services for co-housing and supported living in private homes, as well as group homes for different levels of functioning. This spring I wanted to move to a place where I could get closer to a community of professionals and my peers, and I sent several letters out, but only one or two came back with positive responses. And what about families who actually enjoy being close to autistic people, because either they lost their own kids, or have found helping others gratifying? Second, how about a referral service of private individuals, health-care professionals, and business owners who have an interest in hiring autistic people, at different ends of the spectrum? This may not be as farfetched as it sounds. In both arenasI feel that there must be interested people out there, who would be willing to share their lives with us challenged people, but we need a forum in order to hook up. For instance, I did Home Health Care work for many years in a retirement community. At the time I didnt know I had autism, but I sensed I needed to pick work below my intellectual level because stress was an issueThe mix of autistic with elderly or disabled proves wonderful because both groups function at a slower pace so are in sync with each other! I worked 60 hours a week with an MS patient with little movement for almost 2 years, never missing a day! Why? It was the perfect mix for both of us! Now, Ive moved from that area, and my references are old, and as outworn as I feel on some of my bad

daysIn other words, there are populations of normies who need us but we need a forum in order to find one another Your last issue was very good, and your comments about your daughter remind me that even though we do the head-work: autistic people cannot always do the social work that is required on some jobs. For instance last year I passed my California Real Estate Exam but working in an office with the sharks in this area was an unreal expectation for myself. That work requires far too much social tact, ability to read cures, emphasis on detailIt was an unrealistic expectation on my part, and frankly I dont like pure business all that much anyway! What was I thinking? Who knows? I had unrealistic expectations for myself plain and simpleYou might remember this story when discussing what your daughter would like to try nextBecause what she would like might be very different from what you loving, devoted normal parents would like for her! Much Love and Gratitude Deborah L. Greene P.S. I loved the fact that you answered people questioning you with so much self-love and willingness to see another viewpoint! Beautiful! Editors Note: Deborah is currently seeking a new position with a family who would be willing to let her live with or near them and be her advocate. Deborah says, My choice is to be a family helper in a very loving family that needs: a) help with the family business; b) caregiver to child or elder or handicapped person or persons; or c) Needs childcare but not mine exclusively (because they need to see neuronormals too). My nursing experience includes 5 successful years in Leisure World, CA. One of my favorites was a long day with a lady who had MS, and all her personal care and leisure activities were assisted by me. Some other household tasks were mine too, cooking , a little housekeeping. Please call 760-365-6728 or write P. O. Box 1473, Yucca Valley, CA 92286. ******** Volume II 2001 p. 5-7 Editors Note: This essay was part of a special education service hearing in New York. We thank Bernice Polinsky for sharing it with us. Late Diagnosis & Transition Issues By Bernice Polinsky If the goal of education is to produce a functioning, productive member of society, my areas special education dept. has failed and continues to fail many individuals with HFA/AS/PDD (High Functioning Autism, Aspergers Syndrome, and Pervasive Developmental Disorders) and their families. When the full spectrum of all these disorders is included , the statistics would be staggering. Tony Attwood and John Pomeroy state that the incidence is 1 in 250. HFA/AS/PDD may be medically different, but are educationally the same, which is vitally

important because the treatment of Autism Spectrum Disorders is education Appropriate education, and education is not a synonym for academics. Lack of access to services has an enormous negative impact on the quality of life experienced by these students, adults and their families. Because many of the students labeled with higher functioning autism spectrum disorders may seem to have less educational needs, their lack of functional, vocational and daily living skills are overlooked and they will fail in life. My son Michael is 28 years old. He lives at home and falls within the high functioning range of autism. Although we knew at age 2 & that Michael had a speech problem, our pediatrician told us to wait until he was 4. He might outgrow this stage and improve was the philosophy in those days. At 4 he was diagnosed with LD and then the archaic term of MBD, minimal brain damage. He received speech/language therapy for a short period of time where he was diagnosed. What he really needed was intensive language therapy but we didnt know that then. Northshore recommended a special services placement, which he attended for kindergarten and of first grade. He had picked up a great deal and was too academically capable to remain there. It didnt take long for the teacher in his regular first grade to pick up on his social and language difficulties. The school did their own evaluation, classified him as learning disabled and placed him in a self-contained class. He was misdiagnosed, misclassified, misunderstood, miseducated, and mistreated throughout school. Because of this he fell through the cracks of standard special education strategies although there was a lot of attention directed toward him. His IEP twice, said he had some autistic symptoms. When we asked about that we were discouraged from using the term autism. Throughout school we were told by his private Psychologist as well as the Director of Special Education, Why do you want to label him? Labels will just hold him back and place him in special needs placement, which would have been inappropriate for him. We were discouraged from ever appropriately classifying him, labeling him and getting him the help he needed. By fifth grade he was fully mainstreamed with Resource Room Services. Yet, he struggled. He never learned the skills that he needed to be fully mainstreamed. He was lacking in many of the needed skills for doing higher-level academics e.g., research, writing a term paper, etc. In addition, he lacked Executive Function, which means difficulty engaging in planning activities, problems with organizational skills, impulsivity, perservation, lack of future orientation (transition problems), and difficulty with self monitoring, both in terms of accuracy and progress toward a goal. His disability not only impacted on academics, it impacted on his whole life and social skills. He had no formal help with this. He does not get social clues. This is part of his disability. Secondary school was often a nightmare for him. He still cant forget the bullying, teasing, kicking, etc. He has some paranoia. This may because he doesnt know if people like him. He wants to be liked. He has trouble reading facial expressions, again part of the disorder, so he cant tell [what your expressions are indicating]. Off and on he has suffered from periods of depression, loneliness, anxiety, anger, agitation and mood swings. He has trouble shifting to relaxation methods when hes stressed.

We were not served well by many of the professionals. I recall the attitude of a resource teacher who told me, You do too much for him. We didnt realize he was a visual learner, that he would learn better if things were broken down in steps for him. We will never know if modern day early intervention would have helped him with his academics, social skills and language. Academically he struggled through and he graduated at 18 totally unprepared for the next step. His transition plan was useless. It didnt prepare him for life after high school. Professionals saw him as college material so hes smart, so what?! Let him grow up; send him to an out of town college (they assumed that this was a solution, little did they know). Our gut feeling was that they were wrong but to satisfy everyone we checked out a few colleges in CT and Mass. When we took a look at the kind of students that were walking around on campus it was so obvious to us that he would never fit in and it would never be the right thing for him. He simply didnt have the skills; he had inadequate independent living skills, social skills and academic skills to do it independently. Transition from high school to a local college was enough of a change and a challenge for him. He was accepted at Dowling College in the LD program where he had a tutor twice weekly. In some ways college was a holding program for Mike till we found out what he could do next. He did understand some of the academics but he really didnt have the skills for college. He drove himself to college and to a part-time job and jiu-jitsu 2 times weekly. He continued jiu-jitsu until 4 years ago when he was 24. He had no friends and no social life of his own. At the age of 19 it was realized that he wasnt accomplishing the needed independence and learning academic skills. There were missing pieces. He was thought to be ADD but after a diagnosis by Dr. John Pomeroy we found out to our surprise that he indeed had autism, HFA. He had many of the symptoms, was more able in some areas but needing so much help with social skills, interactive language etc. This was a beginning for a new awareness for him, for usIt was such a relief to understandwhy. We were now sure it wasnt our fault or his. Eventually Mike came around to accepting his diagnosis and finally having an explanation for why he was the way he was. He knew for the first time that he was not alone, he met others who had similar diagnoses. We looked for opportunities to bring him together with others so he knew he was not alone and he could have others to identify with. He was very fortunate to obtain a job but a few years later we are trying to get a job coach. We saw the value of the support and structure that he needed on the job site. The job coach is needed to customize the environment so he can work with people and so hes not isolated and in his own space. Sadly, we are reminded that the reality is that these facts are not isolated. Families are so overburdened, particularly families of individuals with autism spectrum disorders over 21. If they dont have a job or go on to school after high school they are at home and usually completely isolated from the outside world. Their immediate family is often their only contact. They may sleep to all hours of the day or watch TV all day. The lack of structure and activities may lead to anxiety, depression, anger or agitation.

When he stays at home he is bored, lonely, restless and hasnt enough structure. I try to provide some but Im just his mother and he needs more contacts. Sadly, the only people in his circle of friends are people that are paid. Mikes been designated to be in a group home with similar people. He needs to move out to have a life of his own, a chance to grow as an adult, an opportunity to be more independent. We look forward to seeing him begin a fulfilling adult life sometime in early spring 2001. Not to complainand we are so grateful, but its through our enormous efforts that we reached this goal. Everyone deserves to have a life that is fulfilling, he has the capacity to have one, and his disability could be compensated for with housing and good supports. We want our kids to move along the continuum, we dont expect a cure. This story is being unnecessarily repeated over and over today. Bernice Polinsky http://www.aha-as-pdd.org Advocates for High Functioning Autism, Aspergers Syndrome and other Pervasive Developmental Disorders. ~~~~~~ Volume IV 2001 p. 4 Dear Susan, Thanks so much for your help. I have been listening to the tapes from MAAP that Peter Gerhardt did [Maap 2000 Conference, Florida]. They are an inspiration. I am making a presentation up in Ithaca, NY to the agency that is job coaching my 31- year old son, Eric. Although I am a social worker, and the Mom of a young adult with AS, Eric was only diagnosed 6 years ago. Learning under fire, as you well know, has made me the expert and it amazes me how much I have filled my brain with in the conferences I have attended, and through the support group I run, and the 100s of phone calls that I answer, and the stories I listen to. When I first was asked to make this presentation my reaction was, BUT you are supposed to be doing the job coaching. My next reaction was, How great that they are reaching out and then I started to prepare and I am amazing myself at how much I have to offer because of the all the exposure that I have had. They asked for information on AS but they are getting the whole kit and caboodlethey dont realize that they have been working with our population for years with misdiagnosisI am so excited to be doing this and giving them accurate, full information. I am fortunate to be on a board of education (for years and years) and have had the experience of putting presentations together and also have great handouts from running our support groups. Amazing where life takes you. Thank you again for the wonderful workshop tapes from Peter Gerhardt. We are part of a spectacular community of people. Patricia Rosenthal Schiessel, CSW patschiss@aol.com www.aha-as-pdd.org phone/fax (516) 484-8404 Advocates for Individuals with High Functioning Autism, Aspergers Syndrome and other Pervasive Developmental Disabilities

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