The theme for World Autism Awareness Day 2017 is ‘Toward Autonomy and Self-determination’. This year, instead of speaking to parents, caregivers or health professions, we have got 5 young adults on the autism spectrum disorder to voice their thoughts and feelings on what autonomy and self-determination means to them. Read their evocative responses.
1) NISHANT SRIRAM (21 years old)
Background
He is currently an intern at AMAZE’s flagship program AMEYA – AMAZE PROGRAM FOR MENTORING AND EMPOWERMENT OF YOUNG ADULTS. He is learning to do Technology based work like Data Entry, Digitizing and Graphics as well as life skills like cooking, housekeeping, fitness and leisure skills. He loves Cycling and Trekking in the mountains and listening to music of all genres. He is a National Level Bronze medallist for Special Olympics Bharat, Cycling in the 1km and 5 km categories. A few years ago ..life was not as simple ..diagnosed at 3 years with regressive Autism, he did not learn to speak or write through traditional approaches like Speech therapy and Occupational therapy due to his Sensory and Motor planning issues. He could understand a lot but developed many behavioural issues because of his inability to communicate. That is when his mother trained herself and taught him to communicate using pictures through a methodology called PECS [Picture Exchange Communication System] at age 6. This was a turning point for him as now he was able to express his needs. He also learnt to spell through a method called RPM [Rapid Prompt Method] on a Letter chart. To date his most comfortable mode of conveying open ended information is through the Letter chart. Slowly he transitioned to using a Tablet and a Computer under his mother’s guidance and he currently uses an App called AVAZ on the iPAD to communicate his basic needs and communication. This is an icon based system. To do his academic work and answer questions he uses an App called Clicker Sentences IPAD which will convert his typing to speech.
Interview (responses on the iPad)
What is your name?
Nishant.
Where do you work or study?
Amaze
What do you do at Amaze?
Working
I thought you were training, so you are working?
Yes
What work do you do?
Printing, laminating.
What do you use on the iPad?
AVAZ.
What do you use it for?
Communicate, likes and feelings.
Before Avaz what did you use?
PECS
Do you find Avaz easier?
Yes
Why?
Fast Voice
Do you like Clicker or the Letter chart?
Letter chart
Why?
Faster typing
What do you mean by autonomy?
Autonomy means voicing my opinion, making decisions about myself. Like what I want to do, eat, wear and learn. Everyone has a different need, ask me do not assume.
2) GAUTAM PANDA/CHINU (16 years old)
Background
Chinu is a special child in Autism Spectrum Disorder(ASD). His lives with his family in Bhubaneswar.
Interview
Autonomy, independence, liberty, freedom you expect from others.
Self-determination is totally own affair, self-study, analysis, really within you and your fencing.
I always love to do it in my style.
In fact we all should do it.
But problem is its execution, my problems start here.
Here the role of autonomy makes one free or gives countless anxiety.
Then comes the role of support group. Fortunately I have a family to support me, understand me, feel me and my disorder, my mama, Nalini aunty, Usha aunty, Papa, Menon uncle, Guddi nani, Kabi uncle and a few more.
Positive approach, true acceptance make the problem simpler mostly.
Now let’s listen to music, OK.
3) ANONYMOUS (16 years old)
Interview
What does Autonomy and Self-determination mean for you?
Hi, I am 16 years old. I stay in the boys ‘hostel in my school. I like to be independent. I can do many things independently. I manage myself in the hostel. It makes me feel happy. I decided to live in the hostel because home is lonely as I don’t have brothers and sisters or friends at home. My parents did not let me go to the hostel. But I was very sure and I wrote a letter to my principal to allow me to live in the hostel. She called my parents for a meeting and soon I got into the hostel. I am very happy to join the hostel. I have many friends. I do exercises with my friends. My friends look after me and help me with my things, getting ready for the next day etc. I am thankful to them.
I come home for weekend. I am independent in all my work; my mother tells me that I am a responsible boy. It makes me feel happy. I go alone to my football class on Saturdays by walk. I used to be scared of the dogs on the road; I am not scared any more. I learned to overcome my fear. I enjoy buying treats for myself after my football. My mother gives me money to buy kinder joy for boys and girls. I look forward to these rewards. I like to go to the shops and buy my chips for dinner on Fridays. This makes me learn about money.
I don’t like to be dependent on anyone for anything. It makes me feel bad and angry. I don’t like to be scolded by anyone. It makes me sad, upset and angry. They should teach me correct behaviours instead.
When I grow up, I would like to be an officer. I will stop hitting chest, I will behave well, I will be responsible and work hard, and earn money.
4) VINAMRA VED (21 years old)
Background
Vinamra has mild autism disorder. Although he has a lower degree of classic symptoms, like social interaction difficulties or communications challenges, his parents decided against sending him to school. He was raised at home and taught to be independent and do his own work.
Interview
Which food do you like to cook?
Pizza, macroni, pasta.
What did you make on Saturday?
I cut beans, carrot and cauliflower to make biryani.
What is your dream?
To become like Hrithik Roshan in Lakshya.
Is that your dream?
Yes Mama
And what do you want to buy?
I want to buy a Lexus car black colour 470.
Who will take in the car?
I will take Chani uncle, Neelima aunty, Zakir uncle, Tasneem aunty, Yashaas, Lasya.
Do you like to ride on the bike?
Kawasaki.
5) UJJWAL SHARMA (21 years old)
Interview
Tell us a bit about yourself.
My name is Ujjwal Sharma. I am a 21 years old. I have passed 12th standard from NIOS- National Institute of Open Schooling. My subjects were Mass Communication, English, Data Entry, Home Science and Painting. My favourite subject was Mass Communication.
What do you like to do?
I love to sketch machines and cartoons.
I am learning Digital Designing with Dheeraj Sir for which he comes home and teaches me skills on Adobe Photoshop such as Stamping, Sketching, Correcting images, Creating posters and flyers and Masking. I have completed Photoshop and Illustrator, and now I am learning Adobe Animate to do different types of animation. I am learning to play Bollywood music on the synthesizer. I also like to listen to music and surf the Internet.
What do you look forward to?
I look forward to learn more in music. I want to become a Graphic designer.
What does the theme "Autonomy and self-determination” mean to you?
The word Autonomy means independence of thoughts and action, for example, if I think of creating a poster and able to complete it by an hour; I am being autonomous and self-determined. At present I am learning to be autonomous.
