Autism Unveiled creates an incredible archive of what it’s like to be Autistic in the Year 2015
Autism Unveiled – why?
by Debra Muzikar, curator
In the middle of a dark night in January I awoke with an idea – during the period of Lent I will post blogs by autistic people. Our family had experienced a horrific year where we literally had to move residences because of misunderstandings about my son Kevin’s autism and mental health issues. I wanted to shift the negative energy of fear, stigma, misunderstanding and shame to a realistic look at Autistic people – who are they? what are their struggles? and what are their gifts?
Kevin, my son and teacher, is a 20-years old adult on the spectrum. Adults on the spectrum are different than children. For one thing they can be big and off-putting. Kevin has a flat affect. He’s 6’3” tall and has a dark complexion. He has a dual-diagnosis. He’s not the cute little boy he was 10 years ago. He’s an adult (a man) with real-life adult issues. He’s also shy by nature. This can be misinterpreted as something sinister.
In the wee hours of the morning still awake I had a conversation with my husband Kurt (Aspie) about the project (who else but Aspies wake up in the middle of the night and talk of such things?) The first question to be decided was what the project should be named. Kurt and I bounced back different words. Then Kurt said – “How about Autism Unveiled?” We talked about the symbolism of the veil. People on the spectrum aren’t seen for who they are; they are often misunderstood; there seems to be a veil that separates them (us) from the rest of the world. Once we lift the veil we can see the uniqueness- the humanity inside each individual.
I contacted Autistic artist Nora Blansett if we could use her image of a woman behind the veil and she agreed. Then I created a call for self-portraits. After came the banner and weekly updates to The Art of Autism’s gallery of self-portraits.
Purpose of the Autism Unveiled Project
Autistic people are marginalized in society. This starts from the minute they are diagnosed. Parents are often told their child will be institutionalized and live a compromised life. If they have behaviors or are dually-diagnosed they may be feared for their differences. The media bombards us with negative messages about autism – parents are to be pitied; children are sad and suffering. Big institutionalized non-profits (non-prophets for sure!) lead the way in this negative messaging.
The month I started the project I talked to a therapist in China who said that the United States is advanced when looking at Autistic people. In her country there are women who commit suicide upon learning their child’s diagnosis. This was appalling! I know how bad our family was treated – is it even worse in other countries? I decided to put out an international call for submissions.
I wanted the awareness about autism not to come from researchers, educators, parents, therapists, or doctors; but first-person accounts from Autistic people themselves. They are the experts. So often we parents will reflect our own limited world view onto our children. I asked two questions. Who are you? And can you tell me about the gifts and struggles of being autistic? I also asked how people identified their autism. There has been much controversy about terminology and self-descriptors around autism. Many self advocates have rejected person-first language (PFL). There are many autistic people who identify with person-first language. This is apparent in the titles. And then Asperger’s, even though it is now under the ASD umbrella, is still seen by many as a separate form of autism.
The reason why I decided to post this project on the internet rather than create a book (I’ve compiled two books in the past) was the internet is immediately accessible. It is uncommon for people who are not in the autism community to read books about Autistic people unless they are popular books or movies like Rain Man, which has no relevance in 2015.
Neurodiversity is a hot topic right now. As I write this, I see the AMA Journal of Ethics has posted a special autism issue and Dr. Thomas Armstrong, an educator who writes about neurodiverse brains is one of the contributors.
Dr. Stephen Shore kicks off the project
The next morning, I emailed Dr. Stephen Shore to see if he would come on board. Dr. Shore has been featured in both of my books and is part of the ten percent of Autistic people who are gainfully employed. Not only is he employed, he’s a professor at Adelphi University and travels the world educating people about autism. Dr. Shore immediately responded and said a definitive “YES!” We were on our way. I publicized the project through social media. I hoped to get 40 submissions. I was surprised and delighted I received 90! Even though that meant I had to do a lot more work the project creates an incredible archive of what it’s like to be Autistic in 2015.
Over the last six weeks I’ve posted 2 blogs a day. On the first day I posted 3 blogs– Dr. Stephen Shore, Jennifer O’Toole, and Tito Mukhpadhyay. The reason I started with these three individuals is (1) they are all well known people in the autism community, (2) they show the wideness of the spectrum and (3) they show there are gender differences in autism. The three blogs I end with are equally as important – Emma Zurcher, a 13-year old non-verbal Autistic young lady, (2) Michael St. Germain, dually diagnosed with Asperger’s and OCD, and Jason Ross, who ends the project with an incredible poem about being diverse, being heard and being part of the human race.
An equal number of women and men responded. The age range spanned from 9 to 70. The participants include people from 26 states within the United States and other countries – Canada, the United Kingdom, Australia, Israel, Hungary, Germany, India, the Caribbean. For those who were non-verbal or unable to type, I allowed posts from the parent or foster parent on the child’s behalf. I also allowed commentary from parents on some of the posts. I asked people to share their art, poetry, videos, photography, and websites.
I hope the project will elicit thought, discussion, and wonderment. The project to date has had over 25,000 views. The project has been life-changing for me. It’s given me a much better appreciation of the gifts, the struggles and the complexity of people on the spectrum. It’s allowed me to see myself in many of the posts.
Repeated themes in the project
All the respondents are self-reflective and aware. Many view their autism as a defining aspect of their personality. Their insights defined the project. Often times challenges can create resilience. Awareness of gifts will enhance life experience.
Art, Poetry, Movement, Music is Important
While art, poetry, movement and music is important to the general population, it is even more important for this segment. Many express themselves through ways other than their vocal chords. Participation in the arts and sciences can help make mind-body connections and will often lead to fulfilling careers.
Bullying is common
Most participants have been bullied, ostracized, or discriminated against for their differences. Those who are homeschooled or put in alternative school settings tend to be less bullied (for obvious reasons). In middle school and high school, girls felt shunned by social cliques and more apt to be bullied in covert ways by other girls. Boys were often the victims of physical aggression. Many Autistic people reported having a lack of friends. Many in later years developed friendships, but report having less friends than neuro-typicals (NT’s).
Developmental delays don’t stop growth
Autism is a developmental disability. Adults on the spectrum continue to grow into adulthood with proper supports and encouragement. Sometimes they will surpass NT’s in self-reflection and accomplishments during the span of their lifetime. Non-verbal children often learn to communicate through IPad’s or Facilitated Communication in their young adulthood (or earlier).
Many are creative thinkers who tend to be non-conformists. Many can stay focused long periods of time on a preferred subject or project.
Females present differently than males and are underdiagnosed
Female Autistics present differently than males. Often they are undiagnosed until adulthood. Girls are referred for diagnosis at a rate 10 times less than boys. Through this project, I’ve seen their eventual diagnosis becomes a journey of self-discovery and transformation.
Knowledge of the diagnosis helps
Knowledge of the diagnosis helps the child navigate his world. The participants who talked about not knowing their diagnosis realized at a young age they were different. One young man whose parents hid the diagnosis said he would have been better able to fend for himself if he knew why he was different.
Some parents were diagnosed after their child was diagnosed. In Jennifer O’Toole’s family her husband and herself were diagnosed with Aspergers after all their children were diagnosed.
Strengths can be developed
Some Autistic people are extremely detail-oriented and literal-minded. Strong visual skills and the ability to see details can be a tremendous asset in science and the arts. Jacob Barnett , the 16-year old physicist says math is all about pictures. Literal minds can be important in studying science, linguistics and fact-based subjects.
Pattern recognition is an important skill that many autistic people possess. Creating maps and structures with Legos or other toys as a child is an indication of pattern recognition. Jason Cantu started creating maps at a young age and continues to use maps as a metaphor for his life journey.
Autistic people may lack social skills (which they often can learn). However, they don’t lack empathy.
What parents say is important!
The parent-child bond between some of the participants is strong and important. The words and messages the parents tell the child are indicators of that child’s integration of their autism and future success. Successful young people like Michael Whary (Eagle Scout), Aaron Kelly Anderson (Phd student), Troy Crumrine (attorney), and Tom Iland (CPA) attribute some part of their success to encouragement from their parents.
Just because your child is not engaging with you doesn’t mean he’s not listening or learning something from the world and your words. Jacob Barnett’s mom tells the story of her son who was fixated on water and glasses as a young child. Instead of discouraging him from his fixation she filled many glasses with different levels of water for his enjoyment and fascination. He says he probably was looking at how light reflected on the water in the glasses. His creativity was percolating. Non-verbal Emma Zurcher writes “Years of nothing makes the smart ideas percolate.”
Non-Verbal Autistic people function differently. They are not “less than”
Many non-verbal Autistic people have something profound to say. Often they start communicating through art. If they start writing through an Ipad or FC they often write in a unique, poetic way like Jeremy Sicile-Kira. Some like to sing songs. Just because their mouths don’t work doesn’t mean they aren’t thinking and aware human beings. They may be perceiving many truths about the world that NT’s miss because of their filters and fixation on superficial things.
The terms low-functioning and high-functioning don’t mean much. Everyone has low-functioning and high-functioning skills. A person may be low-functioning in verbal ability but high-functioning in visual perception.
Autistic people have to work harder to succeed
A theme was repeated throughout the project – Autistic people in general have to work much harder at the same job than NT’s in order to succeed. Some reported a lack of ability to understand people’s intent from facial expressions. For Troy Crumrine who received a law degree this has been a challenge in finding employment as an attorney.
Unfortunately, many talented people on the spectrum still have to hide their diagnosis for fear of discrimination. An optometrist who uses the pen-name Kateri speaks to that.
Advice to Parents
In educational settings find programs which nurture your child’s spirit. Educational programs which benefit autistic people are heavily influenced by art, music, and movement. They will allow a child to explore their own world and develop their own creativity. If a child is being bullied, it may be necessary to change schools or placements. Many parents have reported to me over the years, they’ve taken their children out of school for periods of time and home-schooled because their child develops low self-esteem from being bullied or ignored.
Knowledge of the diagnosis is key to self-understanding. Participants who shared childhood memories knew at a young age they were different. Those who didn’t know their diagnosis were confused by their own differences. It takes lots of energy to figure out how to pass for a neuro-typical person when you are wired differently.
Through entering the child’s world often the child will come into the world of the parents. I cannot say how important this is. Many autistic adults are resentful of parents who made them do ABA therapy 40 hours a week. If the parent follows the child’s lead, connections will be made. Parents words are important. The adults who are most successful had parents who believed in them and told them they can be whatever they want to be.
Autistic people’s peseverations and interests can be turned into careers or life-fulfilling hobbies. I’ve written blogs about this.
Strategies can be developed by talking to children about what is going on in their world. As Nate Watkins stated he flaps his hands and makes sounds to calm himself. My son Kevin states when he is eating an orange please don’t talk to me, because the sensory input from eating the orange overwhelms his senses and he can’t hear what is being said to him.
Strategies can be developed to assist people in their jobs. April Dawn Griffin, a single parent, speaks about going into work early, working harder, and not complaining to compensate for her lack of social skills. Tom Iland who passed the CPA exam received accommodations in the testing environment (a dictionary and a quiet room free of distractions).
The project has been a gift
In conclusion, Autistic people do speak! I want to thank all the participants. Reading your stories has given me much more understanding and appreciation for differences. I hope this awareness project will lead to acceptance. My hope is people will come to the Autism Unveiled page and spend a few minutes to understand another’s perspective. I intended this to be an interactive project. Please comment on the blogs!
Perspective-taking works both ways. It’s not only autistic people have trouble taking NT’s perspective. NT’s have trouble taking an autistic perspective.
The project can be viewed here.
Debra:
Great wrap-up to a great project! Thanks for giving voice–and platform — to some great people who have been too often ignored.