Presenting on Autism @SCAN - Special Child Assistance Network, Vidya Sagar School, Chennai. Over 100 parents and educators in attendance. So nice to meet you all. Also got meet a few families a few days later at my grandparents' place.
Scan Q and A 5/26/18
Q. Could you list 3 most important things in a student-teacher relationship from your experience?.
A. 1. Respect for me as an individual. Eg: don’t discuss me in front of me to others as though I don’t understand anything.
2. Kindness and understanding of my issues, rather than blame.
3. Inclusion wherever possible.
Q. If you were put back some years to your 12th year, what would it be you wanted to be different from the center, school, teacher you were going then to learn?.
A. Communication had revealed that I had a bright mind and had a desire to learn by accessing mainstream education.
The issue was that for years, the professionals had written me off and professional ego would not allow them to change their minds.
Given that our understanding of autism is an evolving field, they should have kept an open mind to possibilities and worked with me to help me succeed inside the schooling system instead of outright rejection of requests for at least partial mainstreaming.
Q. How much do you think it is about play, and how much about actual therapy learning practicals that makes it work for you?. Still on your 12th year.
A. You can’t distinguish one from the other really.
Q. How did your basic academic learning happen, especially as you have mentioned that you learned typing only at age twelve?.
A. Who says I was not learning. I was very much learning through inference and observation. I just was not getting formal education. It was just a matter of application to academics.
If you think about it, give the crazy amount of challenges we have, and all the unpredictability of our lives, academics is relatively easier to deal with, as it is logical, pattern-based, and more predictable. So academics actually came naturally and easily.
For example, when I joined the charter school, I’d tested at 12th grade math, but started with the 6th-grade math curriculum as that covers all the elementary math. My folks wanted to make sure my fundamentals were good before rushing into advanced math.
I quickly worked through 6th to 8th grade math and was ready in time for 9th grade high school math, at which time I kept pace with what my typical peers were doing.
I was just able to join in at grade level for the other subjects. Luckily I joined mainstream academics in 7th to 8th grade, so had some time to catch up before high school. High school or 9th grade is where academics get serious in the U S.
The paradox is that I am a pretty fast learner but a slow typer. So it takes me a long time to type out responses, though I may already know the answers in my mind. So I only do a few example math problems, instead of every single problem in the chapter.
Since I have no handwriting skills I have been using a math font software to help me form equations etc. For other subjects, I’ve used a word processing software.
Q. what did you think it would take for you and others in similar position, to lead a fully independent life.? Is it possible, and do you wish for it?.
A. A fully functional, productive independent life is, of course, the dream for all of us, disabled or not.
Every morning, I pray for three things. Speech, Emotion Regulation, and Body Regulation.
If I could get a handle on these three issues, I would be far along in terms of independence, functionality, and productivity.
But if a person is in a wheelchair, you don’t just expect them to get up and run a marathon.
Similarly, I can’t do anything about disability issues that are not under my volitional control.
I can’t stop all areas of my life in the meantime while I wait for solutions.
Until solutions come along, I am going to need and will use all the help and support I can to have as productive a life as I can.
In fact, I want to be part of the solution process that helps many like me.
Q. Can you make out what another non- verbal autistic child is trying to communicate?.
A. There are often subtle but observable patterns in Body language and behaviors that indicate what the child is communicating.
The short answer is often but not always.
Q. Is the world inside an autistic person same as any other, ie with dreams and goals? Or is that too much of a generalization?.
A.The latter.
Q. Autistic persons are nowadays being sent to assisted living conditions at a young age, do you think that its fair?. What would you advice to such parents?.
A.I think I kind of addressed this in the, Don’t give up slide.
Totally not fair.
Remember, as parents, you are the only ones who have a vested interest in our improvement. No one else cares or is going to put the same level of passion and commitment. We did not ask for this disability and are utterly dependent on you to try your best to put us on a path to a productive and meaningful life.
Q. Would it be a fair comment that autistic persons seem more at peace with themselves, have a detached view in a materialistic world and are internally quite ‘zen’ like?.
A.Depends.
For instance, the observable zen state could also be a state of apathy or indifference, which is a symptom of depression. You dont care anymore and so blindly go along. Ironically, you are called very compliant and all programs like such kids.
On the other hand, our external world is confusing and overwhelming and so we try to shut it out through internal introspection as a coping mechanism. This happily leads us to a zen-like state.
Q. What is the one thing, you would like to change in the world today, if you had the power?.
A.Kindness is in short supply. I would like folks to be more kind and show compassion.
Q. Does love and marriage fit in your scheme for your life?.
A.Of course, one dearly holds out that hope.
Q. Is stimming a habit, play, stress release, due to boredom? Is it good to block it?.
A.Stims are due to all of above and serve as a coping mechanism for dealing with our sensory environment.
Please also read the article I wrote in the daily cal titled sensory walkabout.
Stims look socially inappropriate, so try to teach an appropriate looking alternative behavior where possible
