Autism is a Zero-Sum Game

Today I decided to reactivate my blog not as a research and experiential blog as it was in its first Avatar, but as a place i can vent…ponder…and hopefully celebrate occasionally. I am the mother of 14 year old Sahil, a boy on the spectrum.  Today  is a vent.

I have been reading, living and breathing autism for the last twelve and a half years. We have had highs and lows and many many plateaus. I have learned slowly who my son is…and learned to appreciate his character, intellect and love for me. I have learned to count my blessings. The fact that despite being severely impaired in many aspects of his life his cognition is relatively intact. The fact  that despite the physiological challenges and many invisible medical issues my son grapples with he has a wonderful positivity and even more amazing implicit trust and faith that I will finally make things better for him . The fact that my son has learned to use the written medium to communicate his deepest feelings and thoughts. That from somewhere…I am usually able to dig very deep within myself and find the strength to continue to NOT accept his impairments as carved in stone and look for solutions with the same intensity as I did twelve and a half years ago.

But sometimes this sanctum I and Sahil exist in is violated…. Yesterday we were going on a family visit to the Greater Cleveland Aquarium. He had worn his shoes and jacket and was waiting impatiently for me at the door of our apartment. I was locking up and then remembered that I had forgotten my camera inside. I re entered my apartment to retrieve it and in the meantime Sahil made off to the lift. By the time I  reached the lift lobby he had already gotten into a lift and disappeared. This has happened before, and normally he always comes straight back to the sixth floor where we live. I pressed the lift button waited patiently for a lift door to open on our floor. A lift arrived and the door opened…the lift was empty. I let the door close and pressed the lift button again to call the second lift…convinced he would be in it. The lift door opened and my neighbour emerged. He said “Hi your son is in the lobby and taking down the Christmas tree”

All you need to destroy a balloon is a pinprick…this was my pinprick.

When I reached the Lobby sure enough Sahil had denuded the apartment Christmas tree of all the ribbons decorating it. I grabbed the ribbons mortified and placed them on the table.

I forgot about all the intelligent things he had ever typed, the fact that his school principal thought that one day he might go to college…

All I can think is what a friend of mine had said to me once ….that autism is a zero sum game…you are either functional or you arent. Cognition doesnt make the cut alone…its only a small part of the puzzle…a contributor to functionality…perhaps important but there are so many other important skills that make human beings functional enough to live in a society…social understanding…impulse control..emotional balance..and many many other prerequisites.

And why did he pull the ribbons off the tree instead of coming back to the sixth floor? Perhaps because he is obsessed with stringy objects and because of his irritation at being made to wait, and the fact that he knew he was unsupervised, he succumbed to the urge to get at the ribbons.

I had argued with my friend that in terms of her binary analogy autism was a journey where we moved from the zero to the one.

But finally you have to decide whether you are at zero or at one

2012-12-03 18.35.20

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10 Responses to Autism is a Zero-Sum Game

  1. Gita Healingsiggy says:

    Harshita, I send a big hug to you and Sahil. Your friend with the binary analogy is an idiot. Ignore her.

  2. G says:

    Sorry H, we too had an episode this morning ! I hope things get better, and I’m sure we all get back on the wagon ! Its just that we oscillate between 0 and 1 so often, that our average is true north ! 🙂
    (btw, M calls is self-awareness and self-regulation as the core need; and we’ve been focusing on the EQ aspect it, but have always been a quick trip between 0s and 1s).

  3. Uday Kamath says:

    Harshita, Aaroh my 3 year old also pulled the string from our christmas tree and has huge attraction for these strings and even though they know cannot control the urge as u wrote. I think life is not too simple to classify it as Normal-Abnormal, it has “spectrum”, as there is no value for normal and for autistic. Also in the vent post, i could read many positives like the way he expressed and reasoned, many parents with autistic kids will die for that exchange that you had! Good luck and love to sahil.

  4. Tanya says:

    You are right Harshita, all it takes is a pin prick to burst a balloon, albeit we have many many pin pricks all thru the day, nights some times heal us and sometimes get our pillows wet. after 12 yrs of living this i do still ask- why me ( in my weaker moments), with no answers ever, like an orphan i just wake up each morning only to ask this same question to myself again……and life moves on in between…….

  5. sonika says:

    harshita …i am so so glad you have decided to write this…and do it on a regular basis…like i told you yest. i want to know/ hear every bit in detail….

    i know , not the response you are looking for, but that line about sahil’s faith in you and believing that you will eventually make everything okay….overwhelmed me completely….

    frankly i agree with gitahealingsiggy….i don’t agree with your friend about the binary analogy…..yes ..there will be days when you will be at both ends of the spectrum …from whatever i have read and seen examples of sahil’s cognitive abilities…..i’d just dismiss the incident and carry on with the journey…which i know you always do…the resilient woman you are….

    and if it makes you feel any better……every time i am in the park with the girls ….all i see the boys there doing is taking apart/taking down things around them…..i had a boy across the other day and he even untied my hammock while somebody was lying in it….and my younger one…she can’t wait for me get out of the house before she starts opening my drawers and almirahs …does the same in other people’s houses too…..horrible brat that she is….:)

    looking forward to many more blogs…

  6. param says:

    Hang in there Harshita things will get better.Admire your perseverence

  7. Neera says:

    Harshita, I am happy that you have started again to write the blog. We all need to vent somewhere and its a great place to vent. I can also relate to this as I also find my son doing same when he is unsupervised. He keeps twirling things between his fingers including food.

    As I remember, we became friends through your page – “Treat Autism Now”. I was impressed by your posts and blogs then. That inspired me to start my blog – “My Experiences with Autism” (http://jainneera4.blogspot.com/). Please keep posting blogs. 🙂

  8. marie burton says:

    i, too, have a son on the spectrum. he is 3. nonverbal, not toilet trained and if that wasnt enough, he also has health issues. asthma, allergies, nonstop earaches etc. be glad you can communicate with your son. remember what it was like before. i have to go now. jack is beating his head against the floor. why?!?

    • Marie these things are medically treatable…neuroinflammation, autoimmunity, seizures those are things that even verbal or literate children cant tell us much about. Please get in touch with me on Facebook as we have a large community of parents treating these issues

  9. Janne Lynch says:

    My Son is 4 and probably has PDD-NOS or autism. He isn’t diagnosed yet, and we have started biomedical interventions. I found your blog. You are a very smart and determined lady, and I like your blog a lot. It gives me ideas and hope.

    I am going to be your best friend today, and give you hope, (I hope) and tell you something about your “zero sum” theory. Just because you have a 14 year old with autism, doesn’t excuse you from having a 14 year old. If 14 year olds didn’t make stupid mistakes, and screw up ALL THE TIME, they would already all be living on their own. They aren’t. By my counting, your son still has 4 years at least, at the minimum, under your roof before he is not supposed to make mistakes ALL the time. Also, the zero sum theory is too smart for it’s own good. A person with at least 130 IQ made that up. Society is based on 100 IQ average. Your young man is smart! he is going to make up for his deficits with his extra intelligence. He just needs a couple more years to figure it all out.

    My brother is NT, and of average intelligence–or average enough…..maybe a little lower…. and when he was 14, a really smart kid who he was friends with made a pipe bomb. He talked my brother into throwing it at the junior high! (luckily it did not go off) It was a terrible row. But guess what…..

    Today, my brother has his own karate studio and his own students, and he makes enough to get by. He has a wife and a son. He is happy. Or as happy as is average. He functions in society. I’m certain if you think about it, you will remember something really dumb you did or thought when you were 14.

    best wishes, and much hope to you!
    Janne

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