A letter to TAAP by Barbara Moran
Dear Autism Acceptance Project, (we have kept spacing as author wrote it)
My full name is Barbara Frances Moran and I was born on May 29, 1951 in Mitchell SD. My father was born in Armour, South Dakota in 1904. He was Claren Sylvester Moran, the oldest of the three. His dad was a barber (C John Patrick Moran). My dad?s father was the only grandparent I knew. The other three died before I was born. My mom was born Miriam, Emily North in 1906, in Berlin, Connecticut. She had an older brother and sister.
My parents both went to college and dad became a doctor. Mom taught in a high school for a few years and then was a librarian in Cold Spring Harbor, Long Island NY. Dad wound up working at the Carnegie Lab. My parents met at a boarding house where they lived. Men and women were on separate floors and had a common area down stairs where they had social activities. My parents married in 1935 and moved to Omaha, NE where Dad taught at a Creighton University where he had graduated.
During World War II, Dad was in Hawaii and later Okinawa. Dad worked in infection control to prevent the spread of typhoid. His job was one of the safer ones and he never went to Hawaii until AFTER Pearl Harbor. My Dad?s younger brother, Leo born in 1918 was forced to practice the piano and later got good at it. He was a mechanical genius. He helped put together the how-to book that came with the B-29. Leo was scheduled early in his career to be shipped out to the pacific (I guess) and he wasn?t allowed to go because they wanted to start a band and they needed a piano player. Leo was lucky. The ship he was kept off of sank.
You may be vaguely familiar with Lawrence Welk. The band started out as a local band in Omaha at the Blackstone hotel and Leo played some with them while in College and even arranged some music. After the war Leo worked for general Electric and I think it was related to military equipment.
Dad and Mom have 7 children. John, 1936, Martha (?Marty?) 1939, David, 1941, Catherine, 1945, Dorothy, 1947, Ruth, 1949 and then Barbara in 1951. All the others are ?neuro- typical? and college graduates. My parents moved to Mitchell, SD in early 1946 and the last 3 daughters were born. Dad took over a private practice in Mitchell, so he could live closer to his parents. His mom died a few years later but Grandpa lived until early 1975. My parents moved back to Omaha in 1954 and Dad was a pathologist at St. Catherine?s hospital.
I was very young when my parents noticed I was different. At first they wondered if I was deaf and then if I was retarded. When I learned to talk they knew I was intelligent. I seemed ?unaware? because I lacked body language and I didn?t read it either. Now people if they know what to look for would see a kid like that having a sensor processing disorder.I was always a very sensitive person and was a finicky eater. I was bothered by clothes that were tight or felt sticky. I was also overly sensitive to pain and a lot of things ?didn?t feel right? that didn?t seem to bother others. To me, hair and grooming was a source of discomfort and I complained about my hair for years until I could choose to wear it the way I wanted. My parents and many others thought I was a complainer as a child, I cried a lot and sometimes got depressed.I was not cooperative when rules made no sense and I think I was right when at age 4 I decided that adults generally did as they pleased.
True adults do many things they?d rather not but that?s because they get a payoff.There?s no one arbitrarily telling them what to do. As an adult I realized that it?s really true. Adults, unless they?re under somebody?s thumb get to please themselves more than they realize. There are so many good things in my reach now I used to have to beg for and after not get.Not having the money to pay for a want is different than some bully withholding something and saying (as if you didn?t know) ?We don?t always get what we want.? That?s ?parentese? for ?I?m the boss and you can kiss my arse!? Adults generally don?t get slapped in the face like that unless their poor or in a ?care? facility.
I personalized objects since early childhood and that really bothered people as I got older.I didn?t adjust well to school, I got kicked out of kindergarten on the first day of school.I then went to a preschool for the year in another school but didn?t get to go back the next year for kindergarten. Duschesne was a really good school but they washed their hands of me. Creighton ran a Duschesne College (like a finishing school and also had grade school and high school). I was the only kid in our Irish Catholic family to go to a public school and I was in kindergarten in my third school. I went to first grade at another school and part of 2nd grade and was kicked out before the year was over.
By the time I was 7 I had severe tics. And no one knew it was neurological then. It was one more thing for my parents to nag me about. Thankfully I was one of the lucky ones that outgrew them at 15. I think maybe God healed them because there was so much else I struggled with.When I was 8 I made noises and drove my mom crazy. That was a real sad year for me. After being thrown out of school I was tutored by a catholic nun who taught at St. Mary?s College. I saw her one-hour a day at the College and was essentially home schooled.
I saw my first psychiatrist at 5 and went to Menningers at 10. My parents picked Menningers because they wanted me to be able to go to school and they were close so they could visit often.BUT Menningers took over and my parents weren?t ALLOWED to visit unless a visit was scheduled. My first visit after I had been there three months was like a penitentiary visit. I was with my parents 45 minutes in the social worker?s office. I wasn?t alone with them for a minute. My parents drove on ICE to get to Topeka and they were required to leave Dorothy and Ruth in the car!I wasn?t even told that they came. Can you imagine a 10 year old treated like a convicted felon? Before my parents came to visit I begged for an overnight at the motel and I was told that it wasn?t necessary, you have a bed here. My parents drove 300 miles round trip and we only had 45 minutes.
It wasn?t until the following Christmas that I did see my sisters. I hardly recognized them; they?d changed so much. The first year at Menningers I completed 2 grades and was in 7th grade at age 11. Then I was put on Thorazine ?to make me less anxious? and Ritalin to counteract the sedating effect of the Thorazine.I got much more anxious and I went from crying a lot to screaming. I continually tried to avoid school and just couldn?t function. I crashed and burned rather quickly but no one noticed how it was obviously caused by the pills. I think the staff was in a fantasy world. They were really against my ?fantasies.? I was on medication for a year and a half. Later the Thorazine was replaced with Stelazine. After getting off pills I stopped avoiding school but I was sicker than before. It was a struggle to finish school and impossible to behave good enough to please anyone. I was moved to the older girls group at 13 and life dragged on. I was having overnight visits and was offered a home visit but I refused to go home until I was nearly 14 and then I saw how much everyone else had changed and how I was going nowhere.
I realized that Meningers DIDN?T have a clue how to help me. By Sept. 1965 it had been 4 years and no one could ever tell me why my life was such a mess.Since I was 9 � and puberty started (breast development, later periods at 11)? I began to be so upset by loud noises. I cried. At the age of 14 nothing had changed. I had grown up and learned to hide some things but usually I was being scolded because of my behavior. I wasn?t able to have healthy interests any more due to my anxiety and what the drugs did. I was full of apathy and my compulsions were worse than ever.I was fixated on Cathedrals but forbidden to talk about them. In the older kids unit I was nagged about my tics and my grinning. I often had a very tense looking grin when I got too exited.I felt very discouraged and angry. There was NO treatment on even awareness of my sensory disorder or anything done to help me feel calm but a lot that kept me provoked.
I was 15 before I was brave enough to try regular school and I went half days and later (16) full days. My anxiety increased. School was hell but I was sure if I didn?t jump through a lot of hoops I?d be in an institution FOR THE REST OF MY LIFE.When I was 17 I was placed with a family who was a very bad match and I was forced to live there until 1979 when I was nearly 28.I couldn?t tolerate baby noises and nobody got it. They thought I was ?selfish? so I got a lot of sensory bashing when the grandchildren came along. The family had no grandchildren in 1968 but then there was a shotgun wedding and a baby born right before my 18th birthday and she was around a lot.By 1974 she was ok cause she was older but then the other son and his wife had their baby.I got scolded a lot for complaining. Wish I could have had real treatment growing up because then I could have done fine around babies.For me hearing a baby was like taking a bad drug. I?d overreact to sound and then feel bad for hours or ever days.I DON?T WANT ANYONE ELSE TO BE TORMENTED BY NOISE and not helped to tolerate it better.
Sensory integration needs to be given to all autistic people and there MUST be new drug therapies to provide relief from sensory dysfunction. I felt as though my brain was pushed down the stairs or beaten up after and the experts still thought I was a complainer! Even when I was 27. That?s after I?d been in their care for 60% of my life. I was lucky that I was allowed to get into an apartment at 28. At 18 I had finished high school and took a few college classes.The year I attended college was one of the worst in my life. I was only there one year. My parents pressured me to go to college. I didn?t want to go. I had a job in a restaurant. I really ?played in traffic? that year.
In 1970 I attended a mental health social club one night and was molested by a volunteer who was supposed to take me home. He had been in a state hospital himself. The Menningers people didn?t want to help me press charges although they could have had him put away easily. If FOUR psychiatrists and two social workers who knew had made some noise they could have had an impact instead they refused to get involved. Maybe the guy who molested me had done it to someone else before and was put into a state hospital the first time. They didn?t even bother to find out if someone else got molested later. Meningers was a partner in crime.
In 1970 I got a job in a nursing home kitchen where I stayed 22 years. In 1980 I met a Naturopath and finally got some help. After getting WORSE over the years I actually improved. The Naturopath was a really good friend. He is the first involved person who said my problem wasn?t my fault. He also said it was physical and he also worked to help me overcome the shame. I had nearly 30 years of shame to overcome in 1980. The Naturopath died in 1986.
In the late 80?s, my sister Ruth was training to be a doctor and she guessed that I was autistic and in 1991 she took me to New Haven (Yale) to get evaluated, I was diagnosed with autism. It was like being told my sins were forgiven. I was in New Haven 3 months as a research patient and I took another drug that didn?t work but at least didn?t make me lose my mind.
Later in 1992 I applied for disability. After all those years I was burnt out and had been miserable at my job for years.I got my first social security check in 1993 and starting in the 90s I have met a lot of pe0ple involved in autism.Ruth sent me an article by Temple Grandin in 1989 and my oldest sister Marty who had tried to start a group. Her son had autism.It was from Gloria that I learned about the MAAP Newsletter and Susan Moreno. From Susan I got names of people to write to. That?s how I met Kathy Lissner Grant. She called me St. Patrick?s Day in 1990 and I saw her face to face in 1991.I went to St. Louis and we both went to Indianapolis to the National Autism Society Conference and I met Temple Grandin. Later I met Kathy?s friend Pat Amos in Philadelphia when my sister lived there (Ruth). Through Pat I met a lot of other people and got to go to several state conferences.
I always like drawing pictures although it wasn?t always encouraged. My parents said I drew well as a child but when I was older I had to be politically correct before the term was ever invented. I had to keep images in my head because they were forbidden to be seen and heard. People once said they thought I?d lose contact with reality and I couldn?t convince them otherwise. After all I was different and strange and people had their minds made up about me.
NO ONE in the 1960s would have understood ANYWHERE. Since 1993 I have sold pictures at a lot of conferences and even in a couple of galleries for people with disabilities. You can direct people to Visionaries and Voices in Cincinnati, OH. Website: www.visionariesandvoices.com. They have a lot of my stuff there. I hope people in Toronto can support visionaries and voices. They were started by 10 social workers. Bill Ross and Keith Banner. They had met lots of clients who did art with whatever they could get their hands on and they wanted people with disabilities to have a chance to show and sell art.The gallery and studio has been open about 2 years. I get to go to Cincinnati in February and be at one of the art shows. They have a website and I think that they can sell and ship art. You?d possibly have to use regular mail and phones. I don?t know how they do out of town sales. I read Emergence Labeled Autistic by Temple Grandin. If you?ve read it you know she was a hard to handle child but her mom wouldn?t give up. She went to a pre-school and had speech therapy and she had lots of positive attention from a governess. Temple became socialized by love and structure. She must have been loved because she developed respect for authority. She says a lot of positive things about her upbringing.
I wasn?t nearly as challenged as she was. I learned to talk on my own and I don?t think I threw things and made messes like Temple says she did. I never heard my parents describe me doing that. What I did was to wander out of the yard to explore nearby areas and I?d explore in people?s houses. I had no sense of boundaries and no one really showed me any. I was told not to do those things but it seemed my parents could go wherever they wished. Nothing appeared off limits to them.
My tactile differences made me feel violated often and I couldn?t say no to what felt like bad touch. In fact they got after me for resisting and complaining.I get spanked a lot because I got into lots of mischief and then I rebelled even more. Mom never heard me say ?I love you? but she did hear a lot of hostility. I even told her I thought she was ugly with her grey hair and wrinkles. She was 44 when I was born. It must have cut mom to the quick when I said I wanted someone else to be my parents. The psychiatrist that I was taken to didn?t help mom?s self-esteem much either. Eventually mom would say that he just stared at her during the time he talked to her. Half the time was with her half with me. He NEVER saw us together. When I was school age I was criticized for what I was doing to myself. No doubt mom was projecting her guilt on me because no one was telling her “okay, I wonder if mom was blamed by the doctor” or asked ?what do you think you?re doing??
Dad tried to reassure mom. She said it couldn?t be her fault. He had seen enough troubled people whose parents were obviously innocent.Mom?s discouragement was so deep she needed INDUSTRIAL STRENGTH TLC. There was no respite for mom. She was ?on? 24-7. I think my parents were afraid they?d get into trouble if too many others knew about me. In the 50s there was no tolerance for abnormal children.Doctors were still saying ?put the kid in an institution!??and to younger mothers?you can always have another baby.
As a doctor, Dad was able shield mom from people who would have said to put Barbara away. I?m sure many little girls similar to me were put away and disowned by the age of 2 �. Some may have had more potential to improve but vulnerable parents were lone warriors when they had 20 people take sides with doctors who said the child was a burden and that the other kids had to be spared. There needs to be a way adult autistic people can get the help they need and the freedom to choose it. Drugs are not the answer. They only make autism worse. Had I not been given Thorazine and Ritalin I think I might have done better in school. Maybe even been able to handle college.I crashed and burned in school when I was put on meds and after I was taken off drugs. I was never free of feelings I had much less of before meds were started.I think that I would have handled noise better and that it would have settled down when my pre-adolescent hormones did. Maybe about 3 years after my first period it would have settled down rather than getting slowly but steadily worse as I got older.
The Naturopath helped but he died in 1986 and I never found help anywhere since. Noise intolerance is the MAIN reason I had to resort to social security. Had I been able to tolerate noise there would have been jobs I could have handled ok that would have paid better than the nursing home. I had to work in a place where there were few babies. People take them everywhere else.
Had I been able to ?co-exist? with the presence of babies I could have had a good job that didn?t involve direct contact with the public. A lot of jobs are in public places but not involved with direct contact such as stocking shelves in stores or shelving library books. Both of those jobs have benefits and pay better than a nursing home. Noise sensitivity cuts me off from people because you have to tolerate noise to be around people. If you?re in a bad mood or just keyed up, people don?t like you.?
,br> I have spent my whole life trying be accepted but found a double standard. I WAS TOO LOUD for others but no one else?s loudness was too loud.I GOT TOO LOUD because I was so full of emotion. IF I WAS ABLE TO FEEL CALM I could be quiet and sweet and not a complainer.
The past 13 years have been better. I have been able to live in a protected environment and only be with people who understood. That has helped a lot but I am still cut off from life because noise drives me out of places, which I would otherwise enjoy.I have done everything I can think of to change things. I don?t want to wait any longer. I?m 55 and I want to get a life before it?s too late. I haven?t gone out in public without earplugs for nearly 20 years but then I can?t hear what I need to hear (like when somebody tries to talk to me or conversations) BUT I hear sounds that bother me so much louder that they eat me up inside like ground glass and that keeps me from relating to because when autism takes over I am unable to relate.I get agitated and full of rage. Not the kind of person anyone would want to be with. I think treating sensory dysfunction would reduce or eliminate MOST behavior problems. Sensory dysfunction is like chronic pain mixed with paranoia because it can make a person feel ?attacked.? When a loud noise is as bad as getting hurt one can react to anyone who makes noise as they would someone who beat them AND act the way people do when physically attacked which makes no sense when no visible attacked which makes no sense when no visible attack has occurred. Only in a person?s abnormal perception. It?s no wonder why we label people crazy and lock them up. I DON?T WANT TO BE CRAZY. I have spent my whole life longing for love but never getting enough because people were too intense fro me and had to run away.
Do you have any ideas how to help people like me feel good enough to be able to ?put something into life.? They say you get out of life what you put into it. People who do BEST are calm, patient and able to think of others and love unconditionally.Healthy people can take noise in their stride most of the time. I realize that many ?normal people aren?t healthy.? They expected me to be better than they were and when I couldn?t they said get lost. I?ve had lots of people say that I embarrassed them. They didn’t ever like to be seen with me.
Thankfully I never hear that any more.