Wednesday, December 21, 2011

What to do in the Meantime

Suppose you have become interested in Facilitated Communication, and are considering trying it with someone you know and care about. You've read a story or two, watched a video, read a book, or maybe even met a person who uses this method to communicate.

You probably find yourself a little skeptical and very unsure of where to start - or even whether to do so. You have probably heard that training is required to become a facilitator and that may require a trip to Syracuse, NY or Whittier, CA - something that seems entirely out of the question. It is not likely anyone close by is offering such training, and even if they are it might be several months in the future. What to do in the meantime?

Let me suggest the following, keeping in mind that not all of these suggestions may be feasible in your particular situation. Feel free to adapt the ideas to fit your circumstances.

(1) Presume competence. This is not an original idea of mine. It is the unofficial motto of almost all the autism conferences I have attended over the past ten years or more. Dismiss all entrenched ideas that people with autism are cognitively impaired (mentally retarded). I give you permission to look for glimmers of intelligence and then believe them when you see them. Regardless of any professional evaluations or test scores, start to see the person as capable of learning. Based on my many years of experience, I can assure you that all of these people are learning all the time - with or without the assistance and support of teachers. Borrowing yet another common phrase, this is always the "least dangerous assumption" when we meet a new person who is unable to speak, or limited in their abilities to function or communicate.

(2) Watch carefully how you speak and what you say. This follows naturally from the presumption of competence. It follows, but that doesn't mean it happens automatically. This will require some self-reflection and the changing of some long-standing habits. It happens on all levels; we might as well admit it. We don't always remember to speak at an age-appropriate level when we are talking to folks with "differences." (Perfect example: I typed "disabilities" and then decided there was a much better word to use). I have been working on this personally for about 20 years now, and still need to remind myself. We don't always remember to include a non-speaking person in the conversation. We talk about them in their presence as if they were invisible. We talk to caregivers or parents rather than to the persons themselves. And what we have to say is not always pleasant for them to hear.

(3) Look for ways to let the person know you believe in them and want to know more about what they are thinking. Say those words, or anything like those words that feels comfortable to you and fits the situation. Try talking aloud about what you have read or seen about the amazing people who are typing to communicate and then add that it would be wonderful to know what the person you care about might have to say if/when they learn to type. "WOW! Sue Rubin's story is amazing. I can't wait to hear all YOU have to say!" "I just know you are full of great ideas, and probably lots of questions too. Some day we'll find a way to get them all out." Watching one of the videos available or reading aloud from one of the books - the ones that tell of the many success stories of those who have learned to type - can be very effective, in so many ways! Do this over and over again, if possible.

(4) Never miss a chance to give the person meaningful choices. We find that so many of these young people have had people making choices for them most of their lives, so that even teens and adults - when they start to communicate - aren't sure what THEY really like. This might apply to food preferences, what clothes to wear, learning or leisure activities, what color they want their room painted, or just about any aspect of their lives. You don't need to wait for them to start typing; use whatever means of interaction is already in place to give choices frequently throughout the course of an ordinary day. Involve them in the decision-making process at every possible opportunity.

(5) If it's not already established, work on a reliable way for the person to give a yes/no answer to questions. A nod, or thumbs up, pointing to a smiley face, or maybe giving a smile, can all mean "yes." The trick is to be sure the answer is reliable and meaningful. Lots of these folks seem to be programmed to please the adults around them (yes, even those whose actions might seem totally meant to drive us to frustration much of the time!). They really DO want to please us, and they tend to give answers they think we want to hear. We want to undo that, and help them get in touch with their own feelings and preferences. This might seem overly simple and for some who think their kids are already controlling the lives of all family members by their behavior, it might seem totally unnecessary as a point of discussion. Again, my experience is that most kids need our help to learn not only how to ask for what they need, but more basically how to identify what they need or want.

(6) Help other people who are significant in the person's life to make these same changes. If you are lucky, others will learn from your example. Or maybe you will have to do some teaching, gently prodding them and moving them along on the continuum toward complete acceptance of this person as someone who is to be seen as capable, competent, compassionate - and worthy of our respect.

(7) And, if you dare, try holding their hand firmly, pull back - also firmly, at first - and just see if that helps them point or spell to answer a basic question in a meaningful way.

The advice is free, so I can offer a money-back guarantee that you will see results if you are able to make the changes in (1) through (6) above. Number 7 is a bonus for those who feel ready.

Have fun. Stay positive. Let me know how I can help!

Saturday, December 10, 2011

The Reality of Abuse

In May, 2010, I included the following paragraph in a blog posting about some of the reasons for the strong resistance to the use of Facilitated Communication:

"In some cases where a nonverbal child is finally given an effective means of communication we find that what they really want to tell us is not at all pleasant. Some children, and adults, when introduced to FC, started reporting instances of mistreatment or abuse. Without going into great detail about all the chaos this has caused, I ask you to consider the reality. We know many kids are abused, we know many reports of abuse turn out to be untrue, we know these situations are always complex, and always unpleasant. Add to that the sad reality that a child who is unable to speak, who likely presents serious challenges behaviorally, and who has the need for many different adult caretakers in their lifetime, is a particularly vulnerable target for a potential abuser. It's a sure recipe for possible abuse. And unfortunately, it is all too easy to make sure we never have to deal with such a situation - if we don't allow the use of FC."

Reports of child abuse - in its many forms - have been in the news a lot recently, but it's still a subject we really do not like to talk, or think, about. It happens, we all know that, and if we let ourselves think a little more, we would probably agree it happens far more often than we hear about.

In my early, heady days with Facilitated Communication, the subject didn't come up. I could easily tell people that not one single child had reported any sort of abuse to me in our many fun and exciting conversations. The closest we came would have to be those kids who reported sadly that someone important in their life failed to accept what I was trying to tell them and still treated them as if they were "retarded." (Their term invariably; I no longer used that label). It was frustrating, sometimes leading to angry outbursts, and of course something we worked diligently to change. But it wasn't really anything I would call "abuse."

And then, one day it happened. A child who meant a lot to me, one who trusted me to be there when needed, inserted a comment in the middle of a conversation we were having that sent up all sort of red flags. I was stunned and at a loss as to what to do.

This was the first, but it wasn't the last, and I think it's important to protect everyone's privacy in this matter, so I will avoid giving details. Suffice it to say, going forward with information like this is NOT easy. The very idea that a facilitator would even think of making up something like this is impossible for me to comprehend. Starting with school staff (teachers, aides) and moving up the line to social workers, psychologists, administrators, police officers, lawyers or judges -- no one knew what to do with information that was revealed in this way. Everyone suffered, and of course this includes most of all the children, their families, and anyone being accused of abuse of any kind.

Many, many mistakes were made in those early days, but I personally was lucky. The people I dealt with were largely supportive and helpful, moving forward cautiously and showing great respect for the various children involved. Were the cases resolved adequately? I wish I could give a strong affirmative answer to that; but we simply did not have enough accurate information to be absolutely sure of some of the situations. We may have failed some kids and their families. In some other cases with which I am familiar major disruptions to families and lives occurred. I have no idea what the truth is in those cases, except to know much pain was caused.

I continue to think about the larger picture. If kids are being abused, they deserve our help to put an immediate end to the situation and to help them deal with the trauma, not just in the present but for the long-term. If a person is accused of abuse, they have the right of presumed innocence until/unless proven guilty. At the same time, schools, agencies, institutions, and all involved in the criminal or legal system or social services need intense education and support so that cases - when reported by any individual and by any means - are handled properly.

What we cannot do is ignore a child's cry for help. We cannot take away their means of communication - or deny them access in the first place - because we don't want to hear what they might have to say. And if any type of abuse is reported by any child at any time in their lives and by any means of communication, the trusted people in their lives cannot simply push aside what they are trying to tell us. We owe them a fair and complete investigation, no matter how painful this might be.