By Guest Blogger cognitive psychology educator, author and researcher Rabbi Rafi Feuerstein, Vice-Chairman, Feuerstein Institute
I met a family with a very sweet little girl of 3 with Down syndrome who had been brought to me for a consultation. They had a series of questions and I would like to share one of them with you.
“I educate my children in a very calm way,” said the mother. “I don’t put pressure on them, I don’t mediate, I attain my goals in my own way. But I don’t know how to behave with my Down syndrome daughter. Should I put demands on her? Do I behave with her as I do with my other children?”
This question, one that I hear in different variations, stems from a latent assumption which the people who ask are not even aware of, that a particular human characteristic that a person has dominates his/her whole existence. But this is not the true situation – the syndrome has an effect on a particular area of the person’s behavior and thinking and not necessarily on all aspects of the person’s life.
So I said to that mother, “Educate your daughter in the same way as you educate all your children and as you adapt your approach to every child in accordance with his/her condition at a particular time.” We are constantly putting ourselves and our children into ‘squares’ that prevent us from seeing their complexities – their shady sides and where they shine.
Labels do not just distort simple treatment based on common sense, but they also weaken parents and caregivers. The parents are told that their daughter is on the ‘autism spectrum’ and the prognosis is that she will not speak. Go and check how much her parents talk to her at home. Do they talk a lot more in order to increase the chance that she will learn to talk, or do they talk a lot less than they would do to any other child because they have been told that she probably will not talk? What impact will the label given to the child have on the caregivers? How many speech therapy hours will they recommend if the prognosis is known in advance? Two important principles must be borne in mind:
- Often the definition is arbitrary and constitutes an external cultural attempt to connect a collection of disorders and developmental delays to another syndrome which may not even be present. The frequent changes in the DSM from edition to edition regarding autism, for instance, only serve to emphasize the ‘external’ source of the definition.
- Even when the definition has a physiological or a chromosomal basis (such as Down syndrome), it is important to remember that the extra chromosome is not alone – that there are a lot more normal chromosomes. Don’t they have an effect on the person? And what about the extra (21st) chromosome? Can’t it be modified through psycho-educational intervention?
I will close with a half-amusing anecdote. At the end of the lecture I delivered to educators in the US a teacher came up to me and told me that she had a child with a development disorder and that he had not yet been assessed. She told me that she has been going from one specialist to another in order to obtain the correct definition for her son. I said to her, “I know, your son is suffering from ‘AX12N1’, no sorry, actually it’s ‘AX12N2’ – now, have I calmed you down? But now tell me, what are you going to do with that definition? How are you going to help him to make progress?” Is that not the very essence of the question?
— Rabbi Rafi Feuerstein