Comments on: A Q&A about autism with Steve Silberman, author of NeuroTribes

By: chris

chris — Fri, 09 Jun 2017 07:05:37 +0000

If I listened to all the assumptions teachers, doctors, psychologist, and other people made I would have worked in a factory and still be used as trash. As a smart autistic woman hence I am not a person with autism, autism is not a disease you can get rid of it is a part of who I am and how I experience the world. I will never become a neurotypical person and guess what I would never want to. Many of us are told this as a child: “I’ve surpassed the beliefs of those who said I would not amount to anything, who told my parents I would not graduate high school, let alone attend college”. We are told we are useless, dumb, weird, not enough… But if I listened to them I would not have been a physical-/physio- therapist, I would not have traveled the world, I would not have been a teacher in different kinds of sports, I would not have been a photographer, I would not have been a part of society earn my own money and help other people. “I have overcome tremendous obstacles because I have worked hard to do so, not because I no longer have autism”. I am still working hard not to become neurotypical but to become my best self. we are human beings with a full faculty of mind and we have a lot to offer to be respected as human beings. We are no trash you leave at the door and you can only make money off we are a part of society the largest minority group in the world, we have the right to be heard. Stop thinking you can cure us we are normal. We are loved, we have friends, we are honest, we are great. Stop thinking we need to change, or we need help to become you we do not want to become neurotypical.

By: Anonimous

Anonimous — Thu, 08 Jun 2017 06:55:35 +0000

If I would have lived on the assumptions of the world as a child, as a woman, as an adult with autism I would have worked in a supermarket or in a special needs facility as if I was not smart enough to do more. I am lucky I never listened to any of these people I was not good enough, not smart enough, not normal enough. I fought and fought, and I am still fighting but now I am physiotherapist and photographer I interact en help others I am a part of society I am really aware of the things I cannot do but I make up for it in everything I can do really well. My specialty is movement and coordination wich is rare for someone with autism. I connect with people because I work with them hands on. (as a child and adult I do not like to be touched, I did not look people in the eye, and noise is so painful as it still is) If teacher understood how to reach me as a child and as a person and if I knew myself how to help others understand it would have been easier. Now as an adult I send instructions to doctors to make them understand I want to build a relationship on trust, just the way of building it with them is different than with anyone else. But I am happy, I understand myself, I am smart, I have learned and had to learn so much more than what school had to offer. I am part of society.

By: Michael McWatters

Michael McWatters — Tue, 29 Nov 2016 17:01:02 +0000

I appreciate your insights, David, though I respectfully disagree. This is not about “assuming” competence so much as “presuming” it. In my own case, I presume my son is capable and able to do things, and when he faces a challenge, I help him. I don’t start with the assumption that he’s incompetent; not only is that a form of ableism, it’s unproductive.

By: Michael McWatters

Michael McWatters — Tue, 30 Aug 2016 18:38:25 +0000

I’m sorry to hear of the struggles you’re facing in Sri Lanka. I’ve sent you an email.

By: Qazi Fazli Azeem

Qazi Fazli Azeem — Thu, 25 Aug 2016 09:32:06 +0000

This is a message for Mr Cheyne Wikrmathilaka who posted above me, on this page.

I am the south asian self advocate for the autism spectrum, the only one (regrettably) for the entire south asian region since 2016. I have presented at the UN in NY, have been country speaker, trainer and speaker at autism conference in India (twice 2008/2015) and Bangladesh (twice 2009) as well at Autism conferences in the US (2014 Autism Pensacola Florida), UK (Awares.org) and Qatar (2008 UNESCO Disability Conference). The pioneer of Autism training in south asia is Action for Autism (http://www.autism-india.org/) of Dehli, India, started by parent and educator Merry Barua. There have been many parents from all over the world who I met at the AFA’s international autism conferences. I have not met anyone from Sri Lanka at the conferences there or around the world. I would recommend you to see the AFA website and read about their work throughout the south asian region. If you want to email me, you can at azeem@autismpakistan.org – also, read about me through a book I co-authored with international self-advocates on the Autism Spectrum https://www.amazon.com/Been-There-Done-That-This/dp/1849059640

Good Luck

By: Cheyne Wikrmathilaka

Cheyne Wikrmathilaka — Mon, 22 Aug 2016 09:14:29 +0000

HI Michael and the Team at TED. Thank you for these articles. they give us much hope as parents of Autistic / Aspergers spectrum kids.

A humble request: in our country (Sri Lanka) there is almost no specific institution for such kids. Our son Cheynnen (diagnosed on Autism spectrum but borderline) goes to an International School and is given special classes helping him much.
He sings songs, talks much more now but has some issues with reversing of the car and some pinching when denied stuff.
Would there be someone i could reach out to for some additional advice? We are yet trying to fully diagnose where his future interests lie (other than cars) and watching related stuff on You Tube.
Many thanks again and hopefully you would introduce me to someone.
Kind regards, keep up the good work!
Cheyne Wikramathilaka.
Cheynedw@gmail.com

By: Miriam Gordon

Miriam Gordon — Fri, 19 Aug 2016 19:38:35 +0000

Steve Silberman is a hero for fighting so hard to affect change in mainstream education to honor neurodiversity. One size does not fit all – in education or anything else. I went through school in the 60s through 80s, and experienced chronic stress from trying to learn and do everything like a neurotypical child. I finally found out I had ADHD a few years ago, at the age of 49. Talk about 20/20 hindsight! I just hope that even a few of the changes that Steve Silberman is fighting to make in the educational system take root – for all of our sakes.

By: Anne K. Ross

Anne K. Ross — Fri, 19 Aug 2016 04:40:01 +0000

Great interview! Love this: “high support needs” and “low support needs” in particular (even though it sounds so similar to “high functioning” and “low functioning,” I do get the difference). It is so important to realize that people who appear to have low support needs may actually need more than is apparent. My son is/was one of those people, and I wanted to make that point for doctors and teachers in my book, BEYOND RAIN MAN. http://www.beyondrainman.com

By: David N. Andrews M. Ed., C. P. S. E.

David N. Andrews M. Ed., C. P. S. E. — Fri, 19 Aug 2016 00:42:59 +0000

“Ultimately, presuming competence is the ability to imagine that the person in front of you is just as human as you are, even if they seem to be very impaired.”

This is actually very incorrect.

‘Presumption of competence’ is a legal term referring to one’s ability to stand trial. Biklen hijacked it, and made a PC mantra out of it, to support his farce of a venture, FC.

The fact is that some people do NOT have the intellectual faculties one might wish they had in order to enjoy and guide their own lives. This is not to say that they should not be allowed to enjoy or take as much control of their lives as possible. But we have to be realistic about what is possible. Biklen uses this mantra as an excuse to avoid assessment, without which it is impossible to know with any degree of certainty what any given person is able to learn, do or understand. To proceed, then, with any intervention (in the absence of any firm basis for doing so) would be entirely unethical, since we have no way of knowing if that intervention will work – or even if that intervention is appropriate.

I have read the handbook published by Syracuse University on validating authorship of output from facilitated communication. It is, by a different name, a handbook for research and practice fraud. No quantitative measures. No randomising of protocols. No blinding of facilitators. No allowed means, in other words, of checking for facilitator influence.

I am autistic myself, and was non-verbal for the first few years of my life. I ended up researching AACs as a research technician in my then-local hospital. There, as a mathematical engineering physics student, I was on a placement being supervised by someone who was a stickler for scientific rigour. However important it is what is going on inside someone’s head, it makes no difference regarding actual outcomes of an intervention if the data from that intervention – when subjected to study – fail to force us to reject the null hypothesis (the one that says that there is nothing connecting the dependent variable to the independent one). And it really is that simple. The person may be able to solve massive-n x massive-n matrix equations in his/her head, but if that does not get out to the rest of the world, then we’re not in a position to prove that this is happening.

If FC were THAT good, then it would be possible for a physics-naïve facilitator to facilitate Stephen Hawking in a lecture to post-doctoral researchers on some esoteric aspect of cosmology or astrophysics. That scenario is very unlikely to ever happen, even if the professor’s consent could be gained and participation ensured.

Given what is known about FC from real scientific research, the best outcome likely would be a complete word salad. At worst, serious damage could be done to the professor’s health because of the way in which facilitators are trained. And this is the problem.

With all the best will in the world, if one presumes competence without bothering to check that presumption, it is impossble to guarantee that one is not going to make a person’s life worse rather than better.

In science. we never assume without checking our assumptions first.

Professional practice should be exactly the same.