Monday, December 30, 2013

False (Deprivation of) Hope

By guest blogger, Tracy Kedar

 A few weeks ago my friend’s elderly father was hospitalized. At the time he was confused, agitated and had worrisome physical symptoms. A doctor told my friend that she should place her father in a hospice, that his death was imminent. “What?” she responded, “He was driving just last week!” “Well,” said the doctor abruptly, “he isn’t now."

Today he is back home, back on his feet, and more active than he has been in months following the correct treatment of his symptoms by a different doctor. “What that doctor did was rob me of my hope for my father. I was crushed by his verdict and he turned out to be completely wrong,” she told me.

How can we fight when we are told something is hopeless? When there is no point in hoping we must be resigned and accept. When Ido was around six a doctor we saw who specialized in autism said that over the next few years it would become obvious whether Ido would be able to improve or would spend his life as a "low functioning" autistic person. This was prior to him having any communication and his true potential was totally unknown to us. She was preparing us to accept the low remedial, low expectations prognosis she saw as inevitable at that point.

 I was thinking about these stories, and so many others, of professionals advising people to abandon what they saw as false hope, and then having their dire predictions turn out to be wrong. These professionals advised false deprivation of hope, in my opinion.

 I have heard a few people suggest that Ido’s book may cause disappointment to parents whose children with autism may not learn to type as he does. Perhaps they believe that people with autism who have the potential to learn how to communicate their ideas are such rare exceptions that it is better if they keep silent and not give parents a chance to dream that their child too might have that capacity. Better to have low expectations, this reasoning goes, than to strive for more and have hopes dashed. Keep expectations low like this and you guarantee disappointment.

 Every autistic person I know who now can express his or her ideas through typing was once thought to be receptive language impaired and low functioning intellectually. No teacher would have looked at them as children and said, “That one will be a fluent eloquent communicator.” That is because their outside appearance belied their inner capacity. Every parent of these children gambled and decided to pursue letterboard and typing without any guarantee of success.

 Since Ido began typing a number of children we know personally also began to get instruction in use of letterboard and typing on an iPad or other assistive technology, either by Soma Mukhopadhyay at halo.org or in another method. And every single one of them has proven themselves able to communicate. Some are more proficient than others, but none had zero capacity. (This is different than rote drills of typing and copying done in many schools. This is specialized training in typing as a form of communication).

 How would it have been compassionate to these children and their parents to lower their hope to the point that they would not even try these methods? Shakespeare said. “Better to have loved and lost than never to have loved at all.” In this case I would change it to, “Better to have tried and not succeeded than never to have tried at all,” because success may very well be the result.

 Ido describes his experience of autism as being trapped in his own body, with a mind that understands and a body that doesn’t obey. Every nonverbal autistic communicator that we know of has expressed the same thing. How many more are waiting to find a way to express their thoughts and receive an education? Diminished expectations helps no one. I do not believe hope in this case is false, but rather, the denial of hope through misunderstanding and low expectations is what is false.

6 comments:

  1. I completely agree! My son who is also non-verbal has been communicating with us with a letterboard for a little over a year. We learned Soma's RPM method in Oct. 2012 and it has completely revolutionized our lives and our perception of our son and autism. Before communication, we believed our son to be at a toddler developmental level. We were sorely wrong and it breaks my heart that it took us 9 years to realize it. Today our son learns age-appropriate lessons, writes essays about current events, and joins in the family's conversations. My hope for my son has been fully restored. We have been so inspired by you and want to join you in carrying this message of hope to the world. I have a blog that I am slowly turning over to my son at www.faithhopeloveautism.blogspot.com.

    I'll add this quote by Michelangelo:“The greater danger for most of us lies not in setting our aim too high and falling short; but in setting our aim too low, and achieving our mark.”

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  2. Yes, this is exactly what I want to say to parents and professionals. I think every non-speaking person with autism should have the opportunity to at least try! Thank you for writing this!

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  3. I too agree totally. My son is also non-verbal autistic and has recently started to communicate through writing and the level of thinking and maturity that he is showing is way beyond his years, so too his language and maths skills. Since he has started to show his skills, people have started to show him more respect as an individual and this has boosted his confidence so much. We are from India, the same place as Soma and I as a mother had read about Tito and Soma and drawn inspiration from their stories, so much so that despite advice about not hoping too much, I just couldnt give up on my son, who I have always felt had a lot inside of him just waiting to come out. And Ido has been an inspiration too. His book is like a bible for us because my son is so similar to Ido in many ways, we feel. Thank you Ido and mom, thank you Tito and Soma. May more non-verbal autistic people start to express their thoughts and ideas so that the world realises what it is loosing out on!

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  4. Absolutely! Emma wrote this morning "Day after day I am scared of people’s opinions about me because they can harm me with their beliefs about my lack of intelligence. People treat those they believe stupid, very badly. I am not stupid."
    Our goal for the foreseeable future is to make sure others begin to understand that.

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  5. Thank you so much for writing this. In my teaching years, I was often accused of plantiing false hopes in the parents of my students - even before we started using facilitated communication. I DID see signs of intelligence in so many of them and always felt bad when we'd sit at IEP meetings to rehash all the child's deficiencies - and of course LOW ability and potential. Once we found a way to get the kids communicating, I was vindicated, for a while. Once the controversy over fc hit the airwaves, it was all but over. I was fired from one job and almost from another, but I stuck with it and have absolutely no regrets. I can say in all honesty that facilitated communication helped every single young person with whom I have tried it - to varying degrees, of course, but I totally agree that typing/writing should be tried with every single person who struggles to speak, and even those who can speak but aren't really conversational.

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  6. My PhD dissertation is about including families in the autism culture (what my family calls it because we often have to interpret for my son, Liam) as we participate in our Catholic faith community. So much of the world is dependent on conformity to the expectation of the neurologically typical, but in doing this, we miss out on the opportunity to see greatness in our kids. Even people like priests and rabbis can forget their mission is a mission of hope!

    I believe God gifted us with our kids in order to teach the world a new way of being. We can live enjoying every moment. We can relish in every sensation, sound, vision and taste. Our kids see the value of relationship at a moment in history where relationships are being discarded like trash. The non-verbal community does have a voice, and their voice needs to be heard, but not with hears. Our kids have so much they can teach us, but not in the language we have learned. We need to learn it from their language,

    I think mothers of kids with autism learn this language, as you did with your son and touch, but the rest of the world sees it as a mystery or a deficit. It is not a deficit, but a difference. Maybe if people saw autism as a new culture and language, rather than a deficit, they would work harder to communicate with them,

    I am enjoying your son's book and have used it in my dissertation. Best wishes!

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