I think wearing black would send a better message. Autism Awareness should send a plea for action NOW. We need help and resources NOW.
So, the United Nations has established April 2 as World Autism Awareness Day. Great! Let’s talk about autism.
What causes Autism?
Well, no one knows for sure. The “experts” have narrowed the cause down to: environmental, biological, sensory, abuse and neglect, genetic, chemical, neurological, food…and the ever popular–it’s the parent’s fault.
So the short answer is, who knows?
Yesterday someone told me our children have autism because they don’t get enough eggs. Just add that to the list. They might be right.
I recently read a study (2013) that blames the grandparents. They conceived the parents late in life.
Don’t you love scientists–probably funded with the autism awareness fundraising, eh?
Dr. Anne Donnellan spent her career working with families and people with autism. She often says, “The more theories, the more proof that we don’t know.” She also gives her version of circular logic in Disability World.
Parent: My child keeps flapping their hands.
Doctor: Ah, that is because your child has autism.
Parent: How do you know?
Doctor: Because your child flaps their hands.
Is Autism the Greatest Gift?
Some advocates want you to think autism is the greatest thing ever. They talk about the special abilities of people on the autism spectrum and say it is only because of autism they have these talents.
Hummmm. Is that so?
Sure Temple Grandin, with a glance, can tell how many nails are needed to build a livestock yard–but is that only possible because of her autism?
Rainman could count the number of toothpicks on the floor. Is it possible there is someone else in the history of the world that could also do that?
Are we again caught in circular logic?
Parent: My child can count the number of nails or toothpicks.
Doctor: Ah, that is because your child has autism.
Parent: How do you know?
Doctor: Because your child can count the number of nails or toothpicks.
There are some people with the label of autism who can tell you the day of the week for every calendar year in recorded time.
I can’t. Probably you can’t. But, is it possible there is at least one other human being without the label of autism who can?
The Guiness Record books are full of typical folks who can do all sorts of incredible tasks.
Hurry, quick. Do we now need to give those persons the label of autism?
There are some who are going back to past genius’ and claiming they must have been autistic…Mozart must have had autism. Disney perserverated on those mouse pictures–he must have had autism….
Couldn’t Temple Grandin and Donna Williams just talented people? Isn’t it demeaning to say, “No, the individual Temple Grandin has nothing to do with it, it is only because she has autism.”
Is it possible the statistical increases in the number of people with autism is partly due to our current scientific paradigm of labeling and sorting people? And some people promoting “autistic envy”? The new figures are 1-50. One child in every fifty–and all we are doing is having Autism Awareness Day at the Philadelphia Zoo?
What is normal?
Well, turns out we don’t really know that either. Plus, we could say “normal” changes every year in every culture.
Sure we have tests, but anyone who studies IQ or other quantitative or quantitative measures will point out the flaws.
Multiple Intelligences| Howard Gardner
Howard Gardner, studied people with autism who were labeled as autistic savants (actually “idiot savants” was the term used at the time). He was able to identify at least eight different kinds of “gifts or intelligences.” Now, in every school in the world (that uses best practice) his theory of multiple intelligences helps all children learn. Gardner says each of us has all these eight intelligences, some are just more developed than others.
This is one of the side benefits of autism. Without the diagnosis of autism, the scientific community might have had a harder time making this discovery. Science needs large groups.
Could it be we all have gifts and traits of genius, gifts and traits that could be labeled as autistic? Are we all a little autistic? Are none of us “autistic” in the pure definition of wanting to be apart.
So, what’s the deal about autism? Can’t we just celebrate individual diversity?
If we really believe autism is a tremendous gift, then it would be logical for each parent to wish their child would have autism. Right?
I once went to a conference for people with Down syndrome. Everyone kept talking about how people with Down syndrome were the happiest people in the world–how glad they were to have their child in their family. They used examples like, “They will always believe in Santa.” “They are pleased when I fix them chocolate milk.”…
Using circular logic:
Parent: I want my child to be happy.
Doctor: Children with Down syndrome are happy.
Parent: Then I want my child to have Down syndrome.
So, if we want our children to be happy maybe we should try to figure out how to add an extra chromosome to every baby’s DNA.
If autism makes us gifted, maybe we should be researching how to make 100% of the population have autism–add autism magic to our babies’ lives.
This kind of thinking is just nuts, yet it is common in each area of disability. Stick around Disability World and you will hear people yearn to have the courage of people with cystic fibrosis and muscular dystrophy, be sexy like people with cerebral palsy….
Okay, I understand some advocates are probably hyperventilating at this point. How dare I talk this way about people with autism and Down syndrome?
The person who gets joy in Santa, or in having chocolate milk is an individual. Each individual person–even if they have a label– is different.
We can love the individual–not the disability.
As family members, friends and as self-advocates, we can value the individual person’s talents, gifts, joys and sorrows. We can see them in the context of their environments–but, we don’t have to give all the power and credit to the label of disability. The individual should get the power and credit. They are the ones who are who they are.
I can love my Aaron–I don’t have to love autism.
I can see Aaron’s gifts and talents–I don’t have to think they are only because he has the label of autism.
Aaron is a loving person who makes kissing noises as I turn out the light. He smiles when I pull on the toes of his socks. He gives me hugs when I walk past him. He is patient as I try to figure out what he wants. He concentrates on his books and loves pictures. He gets excited when I come in a room. I love when he relaxes in his bath. I love when he initiates a song or going to the bathroom. I love when he figures out how to eat the cheese off my sandwich….
Aaron is unique. He adds his own version of diversity to the human family. He is a great son, brother, uncle, friend… just the way he is.
Autism sucks. Aaron doesn’t.
Autism affects each person differently.
In Aaron’s case, Autism means he can’t talk with words. It means he is 38 years old and can’t always tell when he needs to go to the bathroom. It means he has trouble making friends. It means he yells in public restaurants. It means he chews on his clothes and books and the car seats. It means he has motor difficulties and has trouble walking–crossing from the rug to a tile floor. It means he is always afraid of falling and losing his balance. It means he bites his hand to calm himself. It means it takes him a long time to learn things. It means he will forget them if he doesn’t practice them every day. It means he likes music, but not loud noises. It means he likes to be moving (in cars, buses, boats, planes…) It means he likes to swim, but not bend over. It means he can’t tie his shoes or dress himself independently…it means he cannot be left unsupervised even for a minute.
That all sucks.
I wish it was easier for him. I wish it were easier for me to help him.
But all those difficulties don’t mean I don’t love Aaron with every fiber of my being.
Each day for the last 38 years, I work to get Aaron the support he needs to live, work and recreate in his community. To allow him to be the best person he can be–For him to be able to make choices and have opportunities he wants.
There is a difference.
Dream Plans for Aaron Ulrich
I am adding our dream plan for Aaron. You can click on each of them and see I am NOT trying to cure Aaron. I am NOT trying to make him a different person. I love and respect him as the person he is.
I am NOT trying to make him the person I want him to be.
Every day Aaron teaches me about courage, love, and tolerance. But he knows he can count on me, my husband, and his brother. He knows Annie, his caregiver will do her best to look out for him. He wants a new housemate, like his former housemate Jack who will be there for him. He knows his grandma and extended family including Ana and his niece love him just the way he is.
And until our dying breaths, we will do our best to make his life happy.
No, I’m not going to inject Aaron with an extra chromosome to make sure he is happy. No, I’m not going to give this thing we call “autism” supernatural powers to dominate his life.
But I will give him opportunities to make choices about his life as best he can–in spite of “autism.”
Yes, I can Love Aaron and Hate Autism.
Autism Awareness Day Marching On
Celebrate each wonderful individual person you meet in this video.
Keep Climbing: Onward and Upward.
All my best,
Are you sitting there thinking, “how can this mother be an advocate for people with autism?” Do these words make you upset? Do you agree? Do you think “Disability World” thinks different than “The World”? Can we separate the individual from the label?
If everyday ALL children go to the same schools, get to know each other on a personal level, share time on the playground and lunchroom and bus and in the classrooms–there are valuable lessons in just being together with people who are different than we are.
And maybe one of the lessons is–we are not so different–inside we are the same.
What do the history books say?
In the late 90s, I was teaching education majors who wanted to be teachers.
I took my Introduction to Exceptionalities classes to our university library which had a collection of textbooks being used in classrooms all over the country.
Their assignment was to examine one of the high school textbooks in American History, Problems in Democracy or World Histories and look for pictures or references to people with disabilities. Many of these college sophomores were able to find the same textbooks they used when they were in high school.
Out of the 20 different textbooks they evaluated, no textbook had more than four references to anything about disabilities.
The references, in a sentence or two, referred to:
Helen Keller was deaf and blind and traveled in the Wild West Show, President Roosevelt used a wheelchair, and the American with Disabilities Act passed in 1990. In several of the textbooks, an additional reference said, “deinstitutionalization caused many people who were mentally ill to become homeless” with a picture showing a man sleeping on a park bench. That was it! And the last message was not positive.
People with Disabilities are often Invisible People
People with disabilities have been basically excluded and invisible in the traditional curriculum.
In a culture that asks its children to “not stare,” and “beware of strangers” we have taught our children to ignore and avoid people with disabilities. Many churches only teach about praying for miracle cures and giving charity and alms to the “handicapped” (word from “cap in hand”). So, though there has been some progresss, it is not surprising our textbooks still avoid the whole conversation of disabilities and differences.
The increase in college “Disabilities Studies” majors and minors across the country is a strong beginning and step in the right direction. Kudos to those who are pioneers in this new movement. The recent Tribute to Ed Roberts is an example of people who care recognizing the contributions of great Americans to the freedom and inclusion of all.
Yet, I would bet if we repeated this textbook assignment today in 2013, there would still be a scarcity to references about people with disabilities and of all minorities; though I think the textbook companies are responding to some of the criticism.
What is the purpose of education?
So besides becoming informed citizens, what is the purpose of education, except to prepare each of us in the attitudes, vocational, domestic, community, and leisure skills we need to function successfully the 50-60-70 years of the rest of our lives?
How can we learn to make choices? To learn to ask questions? To learn to solve problems? To learn to work and live together? To learn about ourselves, our ways of making sense of the world? To learn about diversity?
Would our government officials act differently if they followed Thomas Jefferson’s ideas on education? If they went to school with people who had disabilities or had differences?
Schools and Parents
One teacher, one therapist may be great for a year or two but professionals come and go. The parent is the constant in a child’s life. We know our children the best and are the experts on our child’s likes and dislikes, their learning styles and behavior in the home and community. We know our child’s history better than any psychological profile that sits in the school office. We know our child is more than the words on their Individualized Education Plan (IEP).
Our role as parent is a difficult one because we represent the continuity of our child’s life. We know their past, we are part of their journey. But are we willing to risk our children learning about diversity and differences?
There are many parents of children with disabilities who are afraid, it is understandable, but will that fear hurt our children and the next generation of citizens.
Each day parents are challenged as “care managers” to insure cooperation and creativity among those who provide service to our children.
Each day, as our children climb on the school bus, they are a step closer to being adults. They step on the magical bus into their future and the future of our country.
Each day, we must ask ourselves: “Are the skills they are learning going to prepare them to become productive adults, caring and responsible citizens?”
Magic Bus Ride?
The school year is a precious opportunity for new growth. An opportunity to forget the hurts of the past, no matter how difficult. A new school year is a fresh start.
Build that future dream with much hope and picture the magic bus that can take you and your child into a year of wonder, new adventures and new learning in a land of diversity. We learn from our children and they learn from us, and that is also magic.
Wishing you a great year full of magic.
When you were in school, how did you learn about people with disabilities, differences? Do you think there are things to be learned by sharing your lunch with someone who doesn’t talk with words? With someone who uses a communication board to talk? With a classmate who learns differently? With a friend who just happens to have a label of disability?
Many people have a hard time understanding the concepts of independence vs. interdependence, inclusion, multiple intelligences and cooperative learning. I thought a revision of The Animal School by George Reavis might explain it all.*
THE ANIMAL SCHOOL
Once upon a time the animals got together and decided to start a school.
The parents and teachers wanted to make everything FAIR, so they decided ALL the animals would take ALL the subjects. No exceptions.
The curriculum consisted of classes in swimming, running, flying and climbing. Each student would need a grade of C to pass. There would be a competition to see who could get the best grades.
Doug the duck was excellent in swimming, in fact, better than his instructor. But Doug made only passing grades in flying and was getting Fs in running and climbing.
At a team meeting, it was decided he needed to drop swimming and take remedial classes to practice running.
This continued until Doug the duck’s webbed feet were badly worn and he was only average in swimming.
But average, or C, was acceptable in school, so nobody worried about that—except Doug and his family.
Rene the Rabbit started at the top of her class in running. But she soon had a nervous breakdown because she was failing in climbing and the others made fun of her in flying and swimming classes. She passed the standardized tests but the last day of class she buried her books and said she would drop out.
Sam the Squirrel was excellent in running and climbing. He also had high marks in flying until the teacher read a research study that said everything should be taught from the ground-up, not the tree-top down.
Edward the eagle was the problem child. He bit the other animals in running class. He perseverated on flying. In the climbing class he insisted on using his own way to get to the top of the tree. After several discipline meetings, it was decided his diving into the river for fish would count as swimming credit. He was considered a loner with no friends. “He just keeps flying off,” the teachers complained and suggested he be put in special education.
The chipmunks were excluded from school because they could not pass the prerequisite swimming tests. They protested and demanded digging and burrowing be added to the curriculum. This caused hot debate among the parents and students. The rabbits and squirrels thought digging and burrowing should replace swimming. The ducks thought there should be better discipline and a subject on following the leader.
Even though he got a D in flying, one frog won the student competition and was valedictorian. All the students and their families were unhappy.
Further, the chipmunks boycotted school board meetings and joined the groundhogs and snakes to start a charter school.
Once upon a time the animals got together and decided to start a school.
The parents and teachers agreed that if the purpose of school is to learn the skills required AFTER graduation, then the students needed a course called “Survival 101.” The school would be at the pond, because that was where they lived.
The school board announced, “Our common survival depends on learning to live interdependently in our community. Lessons need to be differentiated according to each student’s learning styles, gifts and talents.”
The parents and teachers wanted to make everything FAIR, so they decided ALL the animals would have Individualized Education Plans with curriculum goals and objectives.
The teaching methods would be functional activity-based projects which stressed cooperation and problem solving. “Safety at the pond,” was the thematic unit.
There would be individual goals and objectives and each student would work hard, improve on the skills they have, and contribute their talents and strengths to the group project. The stress would be on cooperation and interdependence, rather than competition and independence. There would be no bullying or fighting.
Doug the duck was excellent in swimming, in fact, better than his instructor. Duck was also gifted at getting animals to follow in line.
At a team meeting, it was decided Doug would help supervise all water activities and be the project manager. Doug the duck was excited to be given leadership activities. His goals were: to improve his dive, his endurance swimming across the lake; his life-saving safety skills; and, learn to give specific directions to get the younger ducks in a row.
Rene the Rabbit was a great runner and jumper. Since she was close to the ground, she was in charge of everything on the earth’s surface. She would learn to: identify animal tracks, and, alert squirrel if needed. Because Rene was worried she wouldn’t be able to do her best job, Eagle offered to mentor her.
Sam the Squirrel was excellent in running and climbing. He volunteered to be the lookout and guardian of the trees and wildlife. His goals were to develop safety plans in case of danger. He would run messages, organize safety drills and practice his alarm calls. To help Sam learn to stay on task, he would also be the time keeper at all meetings.
Edward the eagle was excited he could fly. Doug the duck, the project manager, asked him to survey the pond from the air. He wanted Edward to use his “eagle eyes” to scout for trouble, trespassers, pollution, and any animals in trouble. Eagle’s short term goals would be to learn about weather, air pressure, rain and wind.
The chipmunks, snakes and groundhogs were welcomed in the school. They became a part of the community. They gave digging and burrowing tips to squirrel and rabbit. When a fallen tree threatened to block the water flow, they helped dig a channel.
In the course of the year, Doug the duck saved squirrel when he almost drowned. Eagle saved Duck when he got caught in the ice and almost froze. Rene got enough confidence that she wants to be the project director next time. Sam raised the alarm when a group of Girl Scouts came camping and thought it would be fun to catch animals and dress them in hats.
Because all the animals cooperated and learned together, their pond community was a happy and safe place, each animal was respected and valued for their contribution, and, everything was FAIR.
Instead of one standardized test or grades, each animal had gifts, they all survived, learned new skills, made new friends, and could celebrate the true nature of community: interdependence and inclusion.
Does this fable have a moral?
Keep Climbing: Onward and Upward
All my best,
Please add your comments:
Do you know any Dougs, Renes, Sams or Edwards?
Do you know any students who are excluded and asked to go elsewhere? Are the students treated like individuals? Is the curriculum differentiated? Does everyone feel happy, safe and like valuable members of the community? Are students encouraged to build on their strengths and talents or does everyone have to learn the same things in the same ways? Are the students learning skills that will help them in Survival 101 after graduation?
*Like my husband, George Reavis taught in Cincinnati Public Schools. The original The Animal School was published around 1940 in The Public School Bulletin long before inclusion was even a dream–or was it?
As the number of adults with autism and developmental disabilities rise, many professionals and parents ask me what I am looking for? Will I ever be satisfied? Is it just a pipedream or can we really build an inclusive community around a person with severe disabilities? Can there be a combination of natural supports and paid supports? Does the family have to do it all? Can an adult with autism have a decent quality of life and be happy?
They tell me it doesn’t really make any difference to Aaron, my son with severe disabilities and autism. Their logic says that since Aaron can’t talk, and therefore can’t complain, it is only the mother (me) who has these high standards and expectations and Aaron is just fine and the mother is well, you know, ….
Many times, they tell me how lucky we are… Aaron has a Medicaid Home and Community Based (HCBS) Waiver when there are thousands of people on the waiting lists; Aaron lives in a nice house close to his parents–not in an institution in another city….
The media is full of stories about desperate families of adults with autism and intellectual disabilities: abandon your child to get services — To the parents and professionals who want to give up or “re-institutionalize,” Can we prove inclusion in the community can work?
Many nights these tapes play in my head over-and-over keeping me awake. I ask myself what else I can do to make Aaron’s life more inclusive. I count my blessings.
We are lucky. We’ve worked hard to be where we are, but there is still much to do.
But last Sunday, I went to bed and smiled: “Today Aaron had a good day!”
We usually bring Aaron home with us on Sundays. Here is what this inclusive day looked like:
Aaron’s dad picked him up at 9:30 AM from his house. He talked with Kevin, Aaron’s long-time caregiver. Kevin knew when Aaron had had his last BM. Kevin had given Aaron his breakfast and he was dressed in his Sunday clothes—hair combed, shaved and teeth brushed. He looked like a typical 38 year old.
Aaron came to our house and immediately got his favorite books from the closet. His dad and I sat on couches near him in the living room. Aaron put his books on the coffee table where he turned the pages in two books at one time. When he wanted more books, he went to the closet, chose his books, and carried them to the table. (I know this doesn’t sound like a big deal but because of Aaron’s severe motor and balance issues, this is something we have worked on for years and years.) He also went to the fridge and when I ask if he wanted the pitcher of ice tea or the juice, he pointed to the ice tea.
When he got tired of the books, he went into the kitchen, sat at the kitchen table and we ate our spaghetti lunch together. Aaron put his dishes in the sink.
At approximately noon, Tommy and Isabella (Aaron’s brother and niece) came over. We all changed to our swimsuits, lathered up with sunscreen and walked to the pool at our condo.
Dad started with Aaron in the deep end and Tommy stayed close to Isabella with her floaties. Sometimes we were apart, sometimes we all played ball together and Isabella would swim between Uncle Aaron and Grandpa.
The other families each did their own thing, but we all crossed paths in a friendly community sort of way. There were about 8 other neighborhood kids and their parents in and out of the pool. They all said hello and though we didn’t really know any of these neighbors (it’s a big complex) they were friendly to Aaron and interacted as anyone would. I introduced myself, Tom, Aaron, Tommy and Isabella and hope we will see them again next week.
After about an hour or so, we headed back home, changed clothes and everyone had a drink and ate cheese and crackers.
Isabella wanted to play Hide and Seek in the house (her favorite place is under my desk) and Aaron and I would count to ten and then go and find her. Isabella loves to hide, but then she giggles so much it is easy to find her. Aaron enjoyed the game the first couple times, but then Isabella wanted more and more and so he just sat back on the couch with his books and watched.
About 4 o’clock, Tommy and Isabella left to meet Ana, her mom, who was getting off work; Tom, Aaron and I took a ride to the post office and grocery.
At 5:30 we took Aaron back to his house and Kevin and his wife were waiting for Aaron to take him to King’s Island, an amusement park. We took him to the bathroom, washed his face and hands, checked his shirt and hair and again exchanged some details about how Aaron likes the Octopus and train ride and …
Aaron got in their car and they were off for the evening. Tom and I went back home.
Too much to ask?
Now, I ask you… is this really so difficult to visualize?
If it was only paid staff, Aaron’s parents are dead or out-of-town, could the staff figure out how to fill up a weekend afternoon with some friendly faces and meaningful activities in the community?
Would Aaron be groomed and the staff person double-check his toileting schedule so he is comfortable? Would Aaron be in status-enhancing clothes that were clean and age-appropriate so he could blend into the community?
I know Kevin can do it, because he and his family have known Aaron for years. But I can’t understand why other staff don’t get it.
Aaron is currently between roommates, so right this minute, he has 1-1 staff. This is the best opportunity of his life for getting out into the community, when he gets a roommate it will be 1-2 people and much harder to take them out.
Focus on the positive
Today I have a reason to feel good about Aaron’s life. We all shared a pleasant summer day. Aaron and our family did what many other families were doing all over the city. Aaron was surrounded by people who love him and care about him. We celebrated his self-determination to make choices and do the activities he likes. Aaron used the skills he learned in his 22 years in school and therapy. Aaron had staff who were willing to try and give him a good time. Aaron was healthy and happy. I only saw him bite his hand one time all day. The activities were in his home community. There are future opportunities for building a network of long term support and acceptance.
And this is inclusion. This is our vision for Aaron. This is the future we hope for our son. This is all we are asking for. Carpe Diem!
Come on, share what you are thinking. Am I being unreasonable to expect these kinds of days? Should I just accept “reality”? Do I just count my blessings? Do you have similar experiences? Should we go back- and re-institutionalize?