Feeling competent

This is a lesson learned very recently. I have just finished ordering, unpacking, and setting up a brand new desktop computer. At the moment, I have three computers I am juggling, trying to find documents, mailing lists, blogs, etc. that are saved somewhere and need to be moved so I can get at them. What I want to share is the sheer exhilaration I felt when I realized that I had managed to get things up and running, with Internet access, ALL BY MYSELF!

Maybe you remember a child's book with that title, or at least that theme. Maybe you still read that book to someone in your life. Maybe, like me, you really haven't given the topic much thought lately. I don't think it hurts any of us to stop and think how great it feels to accomplish a task (simple or complex, techy or not) without needing help.

For a full day and then some after my computer was fully functioning, I just had to mention to anyone who would listen that I had really done it! I was glowing in self-satisfaction. It felt (and still feels) wonderful.

Let's think about the people in our lives who are greatly limited in what they can do for themselves. Let's think about the IEP's we write for kids in school, all too often focusing on the deficit model. We discuss the PLOP (present level of performance) and then quickly move on to everything that needs fixing, and that list becomes the tasks we work on at school and at home. Personally, I can't think of anything more discouraging than spending a day with folks who know all my weaknesses and, with the best of intentions, set about helping me to "improve."

What if we started with strengths, provided numerous opportunities for success, and then ever so slowly introduced something a little more challenging?

Since I look at just about every area of disability as motor-related, rather than cognitive (i.e. making the least dangerous assumption), I DON'T mean dumbing down the curriculum. In fact, I really mean just the opposite. Move the level of instruction forward and upward just as fast as possible, but keep the motor response needed to show understanding well within the person's physical abilities. KEEP IT SIMPLE when it comes to the actual "work." Let them experience success.

We are always trying to find the perfect balance between academics and functional life skills when we are talking about kids with disabilities, especially if they are more severely impacted by their condition. Independence in activities of daily living also gives one a huge sense of satisfaction or competence, so we don't ever want to do for someone what they can do for themselves, and don't want them to fall into "learned helplessness" because someone is always there to help. But I vote for Velcro shoes over struggling to learn to tie and loose fitting clothes that are more easily managed, whatever it takes to allow a person to do as much for themselves as they possibly can - minus the frustration of endless drill on the task.

Back to my latest "aha" moment. With all my success in this new tech adventure, I would be remiss if I didn't offer thanks to the people in my life who have so patiently answered my questions and talked me through an area that was very, very foreign to me in the beginning. This would include our school tech person, my own kids and grandkids (who know so much more than I do!), some marvelous "geeks" who tactfully took me from my starting point and gently nudged me forward, and even a couple strangers over in India or Pakistan who work for Dell or Microsoft or whomever.

Lesson for all of us: How do we help kids learn? Do we make them feel successful and competent every step of the way? Can we celebrate with them when they are successful and overlook all the mistakes along the way? Learning seems to work so much better in a positive environment. What can we do to make sure our kids always have this feeling of competence?

Report on Autcom 2010

It was a dream come true. My friends from Autcom gathered here in my home state of Wisconsin to share their stories. I might have dreamed that thousands would show up to participate, but that would have been more than a little unrealistic. The actual number was probably somewhere between 100 and 200, but the energy generated by this small but enthusiastic crowd was truly exhilarating. Rather than repeat my comments from last year's Autcom gathering, may I suggest that you look back in this blog for postings from September and October 2009.

This year was special to me personally for many reasons. Bringing the event to Milwaukee was a highlight, for sure, and I am eternally grateful to Sandi McClennen, Judy Endow and Jane Pribek for making it happen - and happen as well as it did! I was also able to participate in the selection of presentations and tried throughout the process to find the right balance of topics and speakers so as to best meet the needs of everyone on the autism spectrum who might want to attend. We've gotten lots of positive feedback and that feels good. Hard work pays off - usually! Thanks also to people like Michael McClennen and Phil Schwarz for all their efforts to keep us connected and operational!

I know two of the keynote speakers quite well and have heard them speak in the past, so I was not at all surprised with the topnotch quality of what Judy Endow and Paula Kluth had to share with the group. I was, however, new to the ideas and experiences of Suzanne Oliver, who talked about the importance of rhythm in the lives of people with autism. Seeing some of her techniques in action with people I know who struggle with movement differences was very powerful. See more at: www.nmtsa.org

It was a thrill to share in the debut of two books by local authors and very good friends. Sally Young's book "Real People, Regular Lives" tells in great detail some of the many success stories of those who have found a voice by using Facilitated Communication. Roy Bedward's book "Communication Makes or Breaks a Life" is a beautiful compilation of his art, poetry and prose. I am so proud to know both of these people and so grateful for the contribution they are making to a better understanding of autism.

From nearby Iowa, DJ Savarese came to share with us the work he is doing, along with Rob Rooy (Rooy Media) to produce a documentary of DJ's life as a high school student who types to communicate - and certainly has a lot to say! DJ's story has been told in book form also ("Reasonable People").

I wasn't able to attend myself, but I heard that Nick Pentzell and Jacob Pratt did an outstanding job of educating and entertaining those who were present at their session, which they entitled, "Rated 'R': That Oh-So-Difficult-Topic."

And so many more concurrent sessions - as always, it's impossible to participate in all of them.

I was privileged to read to the audience a letter I had received from a friend in Canada (see previous blog, dated earlier today) and doubly privileged to serve as moderator for a panel presentation that included DMan Johnson, DJ Savarese, and Daniel McConnell. All three of these young men have had their lives changed dramatically by their access to Facilitated Communication, and those in attendance were kept spellbound by the profound thoughts they had to share. I know Daniel quite well, and was especially proud of his ability to "speak" in front of a group in this way and then take questions from the audience - once again, helping all of us to move forward in our understanding of autism. DJ has now become a seasoned presenter, but it's relatively new for Daniel and DMan - all three did an outstanding job. They stressed the importance of believing in people who are unable to speak, along with being very persistent and never giving up.

Earlier, I had the opportunity to introduce Roy Bedward (See above description of his new book and blog posts from 11/1/09 and 7/18/10)and knew he would do a great job with his PowerPoint story of his life. What Roy likes best is the opportunity to take questions from the audience. It was a thrill to hear that a presentation he gave over two years ago has had a life-changing effect on a young man whose speech therapist was moved by what Roy had to say! Exciting also to hear him give encouragement to a person supporting someone who is nonverbal and learned to type almost 20 years ago, but has not typed for some eight years now. That same young man typed two full sentences with me personally the next day. We can make this work!

I was very proud of two of my young friends who were able to attend the whole conference and will no doubt someday soon be giving presentations themselves. I give lots of credit to their families for making this possible, as well as the hotel staff and conference planners who made the environment very autism-friendly.

I will write in a future blog some of my thoughts about a very special panel presentation given by some of the autism moms I know. They chose a roundtable format to talk candidly about some of the frustrations (and joys) involved in finding the right supports and services for a child - or adult - who is nonverbal. A very difficult topic that needs a lot more attention.

While I found myself totally exhausted once the conference had ended, I really did want it to go on forever. I do hope even more of you will be able to participate in the future.

Guest Blog - from Aaron to his friends at Autcom

A message from Aaron Greenwood, Alberta, Canada
Age 13; Grade in school: 7
Using FC with his mom, Suzanne

autcom conference 2010

hello everyone ,

i am so happy to have this opportunity upon me to share my thoughts on autism . only on my diagnosis did my life truly sail on to disaster . i was a happy child. now i remember much of my childhood on my family farm . it was a life just like many kids. lots of love and kindness was shown to me.

in freedom i was home . i gave my family a lot of credit for accepting me as i was, not wanting another child . usually my life was happy. now never was there sadness . upon my diagnosis my life changed as lots of people tried to change who i was . i did not want to be changed. most great, just people really realize every autistic person dearly wants only to be free. realizing who they are is a gift from god . the truth is realizing that your child is truly special . not created as broken but created as loving, capable, truly gifted people . god dares to create all of us, perfectly free to be his children. until we realize he does not create garbage, but only gifts of his love, will we ever understand autism . free only to dare to be different ok .

i was never ok with being treated like i needed to change . it is a horrible reality only to have people in power treat you like an object only without asking you or respecting you . in my life my parents always treated me with respect, only in my life outside my home was it different . i have had many people speak for me in my life. i needed only to be listened to . just need people to in love, respect in love. in love only kindness should be your true, just kings of your life . i am so happy to be treated as an intelligent person with much to say in the world . i must emphasize to all parents and caregivers to remember the person inside the body of autism, only love will be treated as ok . of just anyone who feels they must treat us with disrespect, then leave us alone . kindness is shown in respect dear loving family members and friends . love us as we are, not as who you want us to be . kindness is god's way. not realizing who we are in this world is not in god's plan for us all .


fc has been a just wonderful freeing gift. a great tool for me to realize my thoughts and beliefs . i am so most happy to have this form of communication available to me in my world. it has opened up my great voice . in my world, without fc, it was dark and freedom less. i was so lost and alone in my ever sad world . i am so thankful to have char* teach me and my family the importance of fc in the lives of autistic people. in many ways it is so much responsible for where i am today . i also thank gail** for being the first person to show really how wonderful i am in this world . these two people mean so much to me and my family .

i truly think that in this world there is too much hate and truly angry people . only in love can we heal this world. love is the only way . autism is not a curse, not a life ender, not a life killer . i hope to let all of you know that my life has a purpose, a plan, a life's longing to be a part of this world . kindly remember that reality for some is not a reality for others. only that we must respect everyone's place in this world . only then will we lovingly, fantastically, joyfully, freely be allowed to live together . upon my end of my letter thank you for listening to me. kind of you to take the time to hear my ideas .


your friend ,
aaron greenwood


• * Char Brandl (Wisconsin)
• ** Gail Gillingham (Alberta)
• Unedited, except to add some breaks for paragraphs

Working Our Way Through Things

It's a perfect blending of my personal "lessons learned" - reliving with one of my grandkids something I have experienced over and over again with those I have worked with who struggle with what we call a "disability" but is really more like a "different way of experiencing the world."

Our three-year-old granddaughter is at a new preschool this year. She's always been a happy, easy-going child who is able to find ways to entertain herself - an "easy" child to care for and love. For a variety of reasons - lots of fun time with her family over the summer, followed by having both parents suddenly VERY busy with other demands in their lives and of course an entirely new setting where she would be expected to spend some very long days on her own - this particular transition has not gone well at all.

I was called two days in a row to come and pick her up because she was running a slight fever, not eating, and crying all the time. But as soon as I arrived, she perked up, and once we got home she did nothing but eat and chatter nonstop for at least a good hour, before moving on to play with her favorite toys as though nothing was wrong at all.

Bless those preschool teachers, who undoubtedly have seen it all. They could see we needed to change this pattern as quickly as possible. Those of you who have kids with autism will no doubt relate to what has helped - and all of us can learn from the experience.

First of all, we established that they would NOT be calling Grandma if she isn't "feeling well" and then they made up a visual schedule (love it!) of the day's activities so that she would know what was going to be happening and just how many more things were planned before pick-up time. She's a talker by nature, so once they could get her to stop crying they could start helping her talk things through.

And she does need to talk things through, over and over again. On the weekends, she established a play routine that went on for hours. Using a special teddy bear, she would bring her "baby" to me, the "teacher," and gently say good-bye, reminding her baby that she'd be back to pick him/her up after nap time. And she'd walk to another part of our house. She didn't really care what I did next, so I could read the paper or whatever, but I DID have to put the teddy bear down for a nap when she was ready to return for the loving reunion.

I can't tell you how many times we repeated this scenario, but it extended over at least three weekends - and it has worked. Things are going much better, and I know she is going to be just fine.

Now, what if she weren't able (at age three, or at any age!) to speak. How could she possibly find a way to work through all the anxiety, fear, sadness, loneliness, whatever?

I think about the many kids I have known over the years with autism, Down syndrome, or other conditions that cause serious problems with communication. So very many of them developed what we see as repetitive behaviors (or even "obsessions") and I am sad to say there have been times when we (the parents or professionals, those in the know!) thought this was unacceptable social behavior and tried to remove it from their repertoire. (My humble apologies to all those kids!)

Think about the kids who wear out VCR or DVD players by playing a favorite video over and over again, or the ones who have to see every single Thomas the Tank Engine story. I had one boy who collected Berenstain Bear books. He didn't always need us to read them to him, but did seem to find great comfort in spreading them out, touching them lovingly, and even going from one room to another in our school to seek out any that he hadn't yet seen and touched. Whether it's Sesame Street, Blue's Clues, the Muppets, Disney videos or Thomas, there must be SOMETHING that helps our kids cope with the world around them, something in the message, or something in the repetition.

May I suggest that we don't really have to figure out precisely what attracts them. It is enough to accept that there is something special going on and then let them use these special tools to work through whatever they might be struggling with at the time.

I would love to have others share their personal stories about "useful obsessions" :-)

Thoughts on Inclusion

Two recent articles in the New York Times caught my attention, and have given me lots to think about. I'd love to hear what you think also.



Most recently, my home town ("adopted" in our retirement years) - Madison, Wisconsin - was featured as "A School District That Takes the Isolation Out of Autism" - 8/01/10. I don't really have anything to do with the school system at the present time, but I do know one of the families included in the story and I am very proud to support the Madison Public Schools in their efforts. (That includes paying our taxes willingly, high as they might be!)



I happen to be a big believer in the value of full inclusion, but always with the caveat that it will only be successful if it is done correctly. And along with the theme of my blog, I do feel we've made many mistakes along the way. Hopefully, Madison and other districts have learned and are doing all they can to do it right, in spite of all the obstacles that are sure to be there - declining funding, budget cuts, lots of misunderstanding, lack of adequate staff training, and on and on.



Proper supports must be in place and each student's situation must be assessed for his/her unique needs in the school setting. Inclusion doesn't have to be - and really should NOT be - an all-or-none situation. Finding the right balance between time in the regular classroom and time away from that setting for more individualized programming, or "down" time to help those with sensory issues or anxiety problems, is one of the keys to making inclusion work.



Most of the students I worked with needed full-time adult support in all school environments, but of course that isn't true for everyone. Obviously finding the best match between student and educational support person makes a huge difference; so does helping that support person know just when/how/how much support to provide, so as not to bring on learned helpnessness.

A few direct quotes from the article:

"Families with children with autism and developmental disabilities move from all over the country for the Madison schools." (Three families who have done just that are featured in the article).

"While it costs Madison $23,000 to educate a child with autism (to pay for extra support staff members) versus $12,000 for a typical child, Colleen Capper, a University of Wisconsin professor, said inclusion was cheaper than segregating students." I am not sure which part of this will be harder for most people to swallow - how much it costs for inclusion or the fact that it's more costly yet to go back to the old model. Our schools are hurting; they need our support!

"Madison is changing, however: an influx of poor children, a migration of wealthier families to the suburbs. Parents of the gifted recently petitioned for more honors classes . . . . " One parent is quoted as saying, "I am not convinced that even the most masterful teacher --- and we have many of them here in Madison --- can teach effectively to the full range of ability and need we currently have in our public schools. Not at the same time in the same classroom." I certainly would agree with that.

It's also tricky - and important - to find the right balance between an emphasis on teaching what we call "functional life skills" and the usual academics. The second article (which actually appeared earlier, on June 19, 2010) illustrates this quite dramatically. The headline reads, "Schools Struggle to Educate the Severely Disabled" and the article focuses on a young man named Donovan, age 20, who is about to leave the public school system in New York City. Donovan suffered a tragic accident as an infant and has significant multiple disabilities as a result.

Donovan - and others like him - are entitled to a free, public education as a result of federal legislation that has been in effect since 1975. But schools differ widely on just what services are offered and what is considered "education" for those whose abilities are as limited as Donovan's. He "recognizes familiar voices, and can mimic their intonations. He communicates some needs; at lunch, he pulls off his bib to show when he is finished. When happy, he sings fragmented notes, his scratchy voice rising in triplets and quads. But he cannot walk, does not speak and cannot feed himself or see much beyond shapes and shadows. On standardized assessments, he has trouble with tasks most children master in infancy . . . . he does not respond consistently to his own name."

Perhaps most significantly, when it comes to what is written in his Individual Educational Plan (IEP), "(t)he problem is that after 15 years of education, he has not learned how to do most of those things (skills targeted in the plan) reliably."

In many ways, Donovan is luckier than most. He has a mother who loves him and is happy because he seems happy - although she is unable to care for him at home. He has a teacher who "uses all of his creativity to adapt the lessons, writing his own books, using symbols, pictures and words" --- even though he is a first-year teacher. He has a principal who is willing to think outside the box, and whose goal for students like Donovan is to "strike a balance between functional and academic instruction, focusing on what is really important: the skills that Donovan willl need to help communicate to caregivers in the years ahead."

And along the way, Donovan had a very special educational assistant, who worked with him one-on-one for four years and forged a special connection, using a combination of tickles, head-rubs, and music to reach this particular student as no one else has been able to do. "He understands very well, quite as much as you and I do. If he could talk, and he could see, he could express himself a little bit better," says this dedicated (and undoubtedly underpaid!) "aide."

During my years of teaching, I worked in a residential facility, a segrated school, segregated classrooms in regular schools, and inclusive settings with varying levels of success. While those of us who are trained to be "special" educators and who CHOOSE to work in these settings might have the best interest of the kids at heart, and might be truly dedicated to what we do, we simply can't match the impact of having "typical" peers around on a regular basis and there is no way we can provide the intelllectual stimulation and challenge that is provided by the "regular" curriculum in the "regular" class setting.

If we think about kids like Donovan, we must meet their basic physical needs, and then their all-important needs for safety, security, acceptance and belonging. We must do all we can to provide an effective, meaningful means of communication, and we MUST continue to challenge them intellectually - regardless of the present level of performance or any measure of assumed cognitive ability.

We have misunderstood and vastly underestimated far too many kids for far too long. They deserve much better from our school programs.

Think, if you will, of Helen Keller. There are many more like her who are being missed completely.

Guest Blog - Poetry from Roy

I was typing with my friend Roy the other day and he asked me to share this with you.

Look into my Heart - Know This

Look into my heart

Know this

I have love for people

Look into my heart

Know this

I have love for God

Look into my heart

Know this

I have love for good knowledge

Look into my heart

Know this

I have love for non-living things

Look into my heart

Know this

I have love for all the creatures on earth.

from Roy: Please share it on your blog. Please tell them I am an artist. Please tell them I give presentations. Give them my name and my web site.

http://www.roybedwardenterprises.com/

I hope you'll visit Roy's site and browse for a while. He does not speak, but uses facilitated communication to type his thoughts. He has a lot to say. Take the time and listen.

Talk less; Write/Draw more

I am quite sure every person who has used a computer has made this particular mistake: The task you are undertaking is moving along too slowly, or not at all. What do we all do? We start clicking, moving the cursor around (if it is willing to move, that is) and click on boxes, words, icons, whatever we find. We make the mistaken assumption that we can hurry the process along. And then we often find ourselves completely "frozen" and have to shut things down and start over.

The same thing happens when we are interacting with people who struggle to communicate. Since they have something different about their neurological wiring, and since we really do not understand just what that might be, we make a serious error every single time we repeat a verbal instruction.

Instead may I suggest the following: Say it once, let them start to process what has been said, and then WAIT! Don't repeat. I repeat: DON'T REPEAT. If they don't respond in some way in a minute or so, switch to another sensory system. Touch them lightly, show them a picture, pantomime what you are asking of them, point, or put your comment in writing. Anything is worth a try - but if we keep repeating spoken words, we are essentially restarting the process over again from the beginning, wasting valuable time and energy, and risking a meltdown, or at least getting stuck or frozen and unable to act.

It's a grandma thing that works with kids who aren't on the autism spectrum as well. We had our two youngest granddaughter with us recently and were excitedly getting ready to go to the zoo. Correction: Grandpa and Grandma were getting ready, while the girls (ages six and almost three) were causing multiple distractions and delays. As I tried to finish packing a somewhat healthy lunch for all of us, I found myself talking to the girls, making suggestions that were clearly falling on deaf ears. I got a little louder and they got sillier. We were NOT moving forward, and I was getting frustrated.

Then I remembered a lesson learned long ago, but forgotten in the moment. I stopped talking, found a piece of paper and started making a list. The six-year-old is a new reader and so very proud of her ability. She was immediately interested in what I was writing (and I suppose also wondering why I had suddenly gone quiet). Carefully she sounded out the words on the list - jackets, shoes, bathroom, umbrella, lunch . . . And right away (being a very smart granddaughter, of course!) she caught on. She still had to irritate her younger sister, but in between the teasing and chasing, she started doing what she could to help us get ready to leave.

I had a wonderful paraprofessional working with me years ago. She accompanied one of our students to his regular classes, helping him with academics as needed, but mostly helping him overcome his many anxieties. Among many other worries, he lived in almost constant fear that there would be an announcement on the public address system - even though such announcements were extremely rare. She discovered that she could draw simple stick figure pictures to help him understand that the voice of "the MAN" was actually coming from our very kind principal. Through a combination of pictures and words along with the universal NO sign (cross-through) she could put him at ease so that he could make it through most of his classes. They visited the office regularly and involved the principal in the drawing/writing adventure.

With younger children, pictures may be most effective, but please do include the printed word as well. While we really don't know precisely how or when kids learn to read, I am totally convinced that the human brain is programmed to find the patterns, unlock the mystery and learn to make sense of written language. All kids need regular exposure to the printed word, along with picture and contextual clues. If we provide them with enough of this, they WILL learn to read - all of them!

If you must talk, talk quietly. If they don't seem to be listening, try talking even more quietly. Or stop talking entirely and switch to paper and pencil to get your message across. Repeating things orally or getting louder are all too often counter-productive and almost always lead to frustration.

Has this - or some other suggestion - worked for you? Do let us know!

Social group

We've been meeting monthly with a small group of nonverbal young adults who type to communicate. Attendance has been excellent, structure is minimal, and we have been slowly moving forward as we all become acquainted and a little more relaxed in a social setting.

And then I boldly invited two additional young people (high school age, also nonverbal typers), without taking the time or making the effort to run this idea past our original group of three typers plus various support people. As luck would have it, everyone showed up. Our rather small meeting room suddenly became quite crowded and warm - not an easy situation for people on the autism spectrum and not an easy situation for their support people either. What was I thinking?!?

First of all, my apologies to those directly involved. This is NOT my usual style at all, and I admit I surprised even myself.

And then to all who read this, here's what happened. For the most part, our original participants had one of their best days yet. They typed that they were happy to have new friends, they remained seated longer than usual, did more typing, and even seemed to be smiling more. One of the two new typers joined in readily, while the other had more difficulty. Both were obviously excited and happy about being there, but entering the room and staying there was not easy for the second young person (let's call him Nate).

Jump ahead an hour or two. Once I was back home, I logged onto my computer and did one of my daily tasks along with reading email, checking Facebook, and playing my favorite games. I read the following message on Daily OM (Check it out at: http://dailyom.com/ )

". . . There is nothing wrong with being afraid as long as we do not let it stop us from doing the things that excite us. Most of us assume that brave people are fearless, but the truth is that they are simply more comfortable with fear because they face it on a regular basis. The more we do this, the more we feel excitement in the face of challenges rather than anxiety. The more we cultivate our ability to move forward instead of backing off, the more we trust ourselves to be able to handle the new opportunity . . . . When we feel our fear, we can remind ourselves that maybe we are actually just excited. We can assure ourselves that this opportunity has come our way because we are meant to take it."

To Nate (and his mom): You looked fearful at times and yet we KNOW you were excited. I hope it helps to know that everyone else in that room has dealt with similar fear and anxiety. I myself have operated from a fear of failure most of my life, and daring to push all of us forward as I did must have been one of those opportunities that came my way because I was meant to take it. The young people who were seated around the table, appearing to be so comfortable and at ease --- every single one of them --- all started out where you were, frozen by fear and unable to participate. Look how far they have come. You will be there too. We are all anxious to hear what you have to say.

There's more from Daily Om that is relevant here:

"Framing things just a little differently can dramatically shift our mental state from one of resistance (AHA -see my previous blog posts!) to one of openness. . . . As we do this, we will feel our energy shift from fear, which paralyzes, to excitement, which empowers us to direct all that energy in the service of moving forward, growing, and learning,"

So let's all shift from fear to excitement, let's enjoy the emotional ride as we move forward, and let's appreciate and celebrate the amazing people we are getting to know in the process.

Again, my humble apologies for throwing things out of whack.

Resistance - # 3

Resistance: opposition of some force, thing, etc. to another or others. (Webster's New World Dictionary).

So, why is there so much resistance to the use of Facilitated Communication?

This question has been with me for over 15 years now, giving me lots of time to come up with possible answers. But first, let's talk a little about just where the resistance comes from.

I have dealt with school staff - mostly administrators and fellow teachers - who overtly or covertly have opposed what I was doing in my classroom. I have learned that highly respected medical (and other professional) personnel are quite vocal in their rejection of FC. Everyone involved with FC in any way was certainly impacted by the negative media blitz that took place back in 1993-94. The repercussions continue to this day.

For the parents and families, it's been a tremendous struggle. Most started out doubting whether this particular method of communication (or any other) might be of any help to their child. Most were afraid to even open themselves to the possibility that their child - often considered to be "severely" cognitively impaired - might actually be intelligent, that there might be a thinking, caring, fully aware person locked inside the silent (maybe screaming) physical body. If their child was then successful using FC, there followed a confusing mixture of emotions - joy, regret, guilt, hope, more doubt, and on and on. More likely than not, these families also met with skepticism from their relatives, neighbors, doctors and others. As resistance grew in the ranks of the "experts" - fueled by loud criticism coming from the media - many parents drew back and even gave up. Only a few were strong enough to hang in there and continue to support their child against the rising tide.

I personally felt the greatest resistance within the professionals who make up the special education community. Perhaps because we have been taught to think about DIS-ability, and our training is largely focused on remediating deficits, we are programmed to have low expectations of our students. Sure we want what is best for them, and we want them to reach their full potential, but something holds us back from even considering that we might be wrong in our best guess as to what that potential might be. We get caught up in psychological evaluations, developmental checklists, and IQ scores, thinking these measures really describe the child and tell us how or what to teach.

Accepting Facilitated Communication as real and valid means admitting we were wrong - about so many things! - and some people just can't do that. It's a humbling experience to apologize to a former student that we vastly underestimated their abilities, but so very liberating and exciting to do just that and then move forward.

But making such a significant change isn't easy. Many families find it difficult, or even impossible, to change the way they interact with their nonspeaking child. Over the years, they have established patterns of family life that work for them. When I as the teacher present the possibility that their child might in fact understand and know a whole lot more than anyone has previously thought - well, maybe you can imagine what an impact this might have. It can go either way: some families are thrilled and the child's life is forever changed; others give the possibilities some thought, maybe try FC themselves, but just can't make the leap to a new way of thinking. All too often, friends, family or professionals step in here and warn such parents that FC has not been "proven" to be valid, or worse yet, is surely a hoax, preying on parents who want so badly to deny their child's disability that they will believe anything.

Resistance to FC happens because it's a huge paradigm shift in thinking, and change is never easy. But there are other possible contributing factors as well. School districts are afraid of additional costs that might result if facilitators are needed for each student. (Truth is - most of the students I worked with required full-time adult support for other reasons; there is no reason those adults couldn't also be trained to use FC - and so much to gain if the child is then able to become an active participant in the regular education curriculum). We tend to think in the short-term, unfortunately, and not look ahead to the possibility that this child might need a whole lot LESS in the way of support as an adult if they receive an appropriate education in their younger years. A lifetime of custodial care is very expensive, after all.

I have to also include here two subjects that are seldom discussed. 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.

Some children, and adults, have surprised us in a very different way when they finally are given a way to communicate their thoughts. Their rich inner life includes deeply spiritual thoughts - often far beyond anything we might have thought possible. Poetry is common, along with opinions about God, heaven, the human condition, concerns for the planet - and the list goes on. Most families find this exciting, but some are overwhelmed or afraid, and the resistance sets in.

My personal feeling is that the single most significant factor in the resistance is an inability to consider the possibilities if what is being said via FC is real. To many people it is just not possible that these individuals could be so intelligent and capable. It goes against everything we've learned, everything we've taught - and just about everything we've done in the name of "helping" these people. We've been so very wrong, and we have to change. That's a hard thing to do. It's easier to resist.

Unfortunately.

Resistance - #2

Resistance: the act of resisting, opposing, withstanding, etc. (Webster's New World Dictionary)

The question of why people who are unable to speak might be resistant to using alternative means of communication comes up regularly, and as might be expected, any answer I might give is purely speculative - although based on many years of personal experience, observation, and reflection.

Consider the situation: A child, teen or adult who has essentially no effective means of communication has probably gotten quite used to not speaking. There may or may not be visible signs of frustration when they aren't able to let those around them know what they need or want, or what might be wrong in their environment, and frequently this frustration leads to what we often describe as a tantrum, or meltdown. When a typically developing (NT) child is just beginning to speak, we see similar behavior on a regular basis - thus the common reference to the "terrible twos." The NT child, however, moves on and adds rapidly to their verbal repertoire, quickly finding that words have power and grown-ups usually do listen and respond.

It's very different for the child who is unable to speak. As time goes on, they tend to find ways to meet their own needs, or use behavior to get what they want. Taking an adult by the hand and leading them to the pantry where the snacks are kept seems like a totally acceptable - and highly effective - way to handle the desire to eat when one is unable to produce spoken words that make sense in the situation. The tantrums or meltdowns are also behavior, of course, but so much less desirable, and not even always effective, since the adult might not be able to figure out what the child wants, or might decide not to "reward" such an outburst.

Those around the nonspeaking child also learn behavior patterns to fit their needs. They might find themselves being hyperalert to warning signs that the child is about to "lose it," they might find themselves anticipating the child's needs as often as possible to avoid stressful situations, and - if they are really lucky - they might find a basic yes/no or simple sign language system that works more or less successfully.

Most of all, everyone gets used to the idea that the child is unable to speak. This isn't all bad. After all, life can be extremely unpleasant if a family member has tantrums on a regular basis because their needs aren't being met.

The child gets comfortable with being silent as well. They just don't expect to be included in conversations, and much of the family life goes on around them without a whole lot of involvement on their part.

So, when someone (like me) comes along with a letter board and suggests that they might want to let us know what they are thinking, it shouldn't come as a surprise if our offer is met with resistance. The key in such situations is to find interactions that are highly motivating - food, games, videos, recreational activities, whatever means a lot to the particular person. And any cooperation on their part should be appreciated and rewarded. Using communication (FC or ANY kind!) should give them some control and power. In time, they can and will learn that words can accomplish a whole lot more, in a much more pleasant way, than behavior struggles ever did.

There are other reasons for resistance, and each situation is different, of course, making it hard to speak here in generalities. I will mention some of the difficulties I have encountered, and then encourage any of you to add a comment to the blog or contact me personally if you wish some more specific suggestions or advice.

Many of the young kids I used FC with in the early years became highly resistant once we were surrounded by skeptics. We had been having lots of success and lots of fun with what we were doing, but as soon as the media exposure turned negative, I felt a difference in what the kids were willing to do. They would type with me when no one else was around, but had no interest when visitors were present. It didn't help at all when one of the parents insisted that I stop all use of FC with their child immediately - that impacted all the other FC users in my small group quite dramatically.

Some young people have deep, maybe even dark thoughts that they aren't at all eager to share. It is totally understandable why a child or adult who has been abused or mistreated in some way would be resistant to our efforts to have them share what is on their mind. Even if we are asking fun questions like what you want for a treat or what you want to watch on TV, if you are being given access to communication for the first time in your life and you have some unpleasant thoughts or memories that are being brought to the surface - resistance is to be expected. If you have any such suspicions or concerns, proceed cautiously and if at all possible, involve other trusted adults in the process. Again, please contact me privately if you want to talk about a particular situation.

Most of the young people I have worked with have a LOT going on in their minds, and it's often hard for them to sort through it all to answer a particular question or put their own ideas into typed words. I regularly talk about this, reminding them that I understand this is all new to them, and they might have so much to say they don't know where or how to start. Before the situation gets frustrating, we stop, with the promise that we'll try again real soon.

Sadly, many of the kids I work with have either had FC taken away from them personally at some point, or have seen it happen to someone they know. Breaking through resistance in these situations is very difficult. I do everything I can to build trust, but I also have to be honest and deal with the reality that until we have school and family working together in a supportive relationship the whole process is often on shaky ground.

If you are dealing with a lot of resistance on the part of a person you care about, keep this in mind. When I was finding it very hard to learn to meditate successfully, a wise leader assured me that often means there's a lot inside and the effort will be great, but well worth it. That seems to be true with many nonspeaking individuals as well - those who resist the most often have the most to say.

Once again - patient persistence. Hang in there!

Resistance - #1

Resistance: a force that retards, hinders or opposes motion. (Webster's New World Dictionary).

This kind of resistance is what we want to provide to people who are learning to type to communicate. Along with conveying a sense of confidence in the person's ability to think/learn/communicate and the facilitator's ability to actually make the process happen, physical resistance is essential to facilitated communication.

When we as facilitators hold the hand or wrist of a person who is learning to communicate, the observer can't tell just how much backward pressure we are exerting. And, of course, we are always trying to provide the least amount of physical support possible, to encourage ultimate independence once the process is well-established. But in the early stages, firm resistance is likely to be needed.

If attempts to begin the FC process aren't working, or if adding a new facilitator to the dynamic isn't working, I recommend adding more in the way of such resistance. I find that people watch me work with someone who types to communicate and then they try to do things just the way I do. I forget all too often to remind them that when I started out as a facilitator (way, way back in 1992), things didn't go as smoothly as they do now. And whenever I start with a new potential typer, I too have to start at the very beginning - and that almost always means providing lots of physical support: holding their hand firmly and confidently, and pulling back very deliberately until they are ready to make a movement forward toward the keyboard, letter board or choice board.

It is natural to focus on working toward independence and/or eliminating all possible facilitator influence - but as a result, a new facilitator tends to gingerly extend their hand, lightly holding the wrist or forearm, and quietly wait for something to happen. What often happens is nothing, or a meaningless string of letters, and essentially only frustration on all sides.

If FC is not working for a particular typer-facilitator duo, I strongly recommend grasping the full hand, giving lots of resistance, or pull-back, and starting out with short, single-word responses that are of high motivational value. Any time a string of three or more consonants are typed (obviously not leading to a meaningful word) stop briefly, and try again.

"Oops, that doesn't look like a word I know. Let's start again."

"Maybe that's not something you care about. How about if we just try typing your name."

"Hmm. Not sure what that might be. Can you type the word 'pizza?'"

Always remind the person that you know he has lots more words/ideas in his head, but the two of you need to learn to work together and YOU are just a beginner, so that's why you are starting out with "easy" work.

My belief is that this resistance slows the neurological process down so that the person can really think about what is being asked of them, sort through all the words, pictures, ideas or static buzzing around inside their head, and then when all goes well, produce a response that makes sense. It also breaks all the old patterns that might be in place - ignoring the questions of others; echolalic speech, typing or thinking; or whatever. Just staying in one place long enough to have someone ask a question and then consider giving an answer might be a major step forward for many individuals. A firm grip on their hand - if they will allow us to do that - can certainly help with staying put at least briefly.

Celebrate every step forward. Please do write with any questions or comments you might have.

Above all, don't give up!

Why Won't He/She Type With Me?

A common difficulty with Facilitated Communication is that a person starts typing with one trusted adult or peer but is unable to type with others. As common as this is, it's extremely difficult to sort out why this is happening.

An obvious factor is the difficulty that so many of our children or clients have with generalization. This is one of the reasons why speech therapists, occupational therapists and other specialists have tried to work in the regular classroom rather than do what is called "pull-out" therapies. It's also why in-home therapy is so highly respected - and effective - for young children.

In the early years of FC, we saw this situation developing and when dealing with parents who weren't being successful at home, we tried to ease their frustration (or guilt, skepticism, whatever) by pointing out that many of our kids were able to type at school but not at home, or able to type with one or two people at school and not others. BIG mistake! Only a few of the parents I worked with were ever successful in typing with their kids - and they had to be SO very patient and persistent in their efforts to accomplish this. Many gave up early on; others fell prey to those who were constantly pointing out to them that FC had not been "proven" and in fact might be a complete hoax.

Obviously we lost many of these kids and their families when the media started attacking everything concerned with FC. But even for those who remained supportive of what we were doing at school, can you imagine being in a situation where the teacher is having deep conversations at school with your child and you are limited at home to using pictures or pointing to meet their basic needs? And then what happens when that one trusted facilitator at school takes a medical leave or loses their job (Both of which happened to me during those years)?

If I had it to do over again . . . I would have had the parents in school as much as their schedules would allow. If their own child wasn't ready to type with them, maybe another child would be interested. I would have spent much more time in their homes, giving them support and encouragement to find ways to make FC a useful part of the home routine.

If I had had an ideal supportive school situation . . . I would have trained everyone who was interested and provided ongoing support and encouragement. We would never, ever settle for a situation where a child typed with only one facilitator - two, three or more would be desirable. Family members would be an integral part of our communication team.

If I had the ideal situation now . . . I would be giving regular training sessions to get lots of people comfortable using FC and ready to try it with people of all ages who might benefit from this form of supported communication. Every single training situation would also involve ongoing support so that no one is ever left alone trying to make FC work. I would be "on call" whenever the process seems to be stalled or breaking down.

I have many of you in mind as I write this. I know of far too many situations where FC has come to a halt, despite your great desire and strong efforts. For you, I will try to make a few more specific suggestions (since I am not close enough for a home visit, unfortunately).

(1) Go back to a video such as "Autism is a World" and watch it with your child/client over and over again. Talk about it. Remind them that you know they have lots to say and would love to be able to converse on a regular basis. This isn't just my idea, by the way. This one has come (strong and clear) from my good friend Aaron in Alberta. Thanks, Aaron - you are one of my very special teachers and a true inspiration.

(2) Find one of the books or web sites that tell of success stories. Same as above - read them aloud (over and over again, if possible). Naturally, I think my book is a great starting point, but so is "Sharing Our Wisdom" or the Breaking the Barriers web site.

(3) Find things that are highly motivating. If they can use FC to make requests for the things they really, really like - let them have it (within reason, of course)! I can't say enough about the importance of helping them see that their use of communication gives them REAL power! This doesn't have to be food or drink. Taking a walk, watching a video, even taking a break and doing nothing might have high motivational value. You know this person better than I do - trust your intuition and instincts.

(4) Look (and keep looking) for a fun situation. Maybe a TV game show? board game, online trivia or other game? Watching movies or TV together - ask basic questions about the content, move to opinion-type questions.

(5) Make every possible effort to attend a conference where FC is featured. Check out the web sites for Autcom, DEAL (for those "down under"), WAPADH (California), WOW (Colorado) or the FC Institute (Syracuse, NY).

(6) NEVER give up. Choose what works for you - a brief period set aside regularly for FC - daily, two or three times daily, maybe? Or an intense weekend where FC is the whole focus and other family members are also involved? (I am willing to come too, if we can find a way to cover my expenses. Tyler and his family in Manitoba made a believer out of me as to the value of this plan!)

Please do comment here if you have questions I can answer. If you'd rather keep it a little more private, write to me at crbrandl777@gmail.com

Very Busy News Day

It wasn't really my plan today to spend all day on the computer. But you know how it goes, some days the mailbox is overflowing with messages and links. Somehow, all those mundane household tasks don't have much appeal.

I won't write much this time; instead will hope you are able to pursue any of the following stories that appeal to you personally.

I will make a brief, POSITIVE, comment on each topic and will deliberately not include the current story about some politician who is saying that having a child born with a disability is a punishment from God. YIKES! What is he thinking????


Time Magazine: "Who's Afraid of Jenny McCarthy?"

I am certainly NOT afraid of Jenny McCarthy, although I usually choose not to watch when she is on one of the many TV shows where she is a regular. I have known so many parents like her - amazingly strong advocates for their children AND convinced that autism is caused by vaccinations and/or curable by dietary changes or supplements. What I like is that she is always positive about her son's autism and his potential. We need more of that optimism. I see autism as so much more complex, and as a lifelong condition, so the "cure" idea doesn't really resonate with me personally, nor the overly simple explanation of a single cause.

New York Times: "Do Toxins Cause Autism?" by Nicholas Kristof

Be sure to read the comments that follow this article. I happen to be a serious follower of Nicholas Kristof, and very impressed by the causes he takes on. He might be surprised at the hornets' nest he stirs up on this one. But I give him tons of credit for entering the fray. I do think we are dealing with a condition that is essentially genetic in origin, but triggered by environmental factors. But our environment is so full of poisons -- how will we ever sort it out? Again, autism is a complex condition; simple answers are unlikely.

Temple Grandin and TED: "The World Needs All Kinds of Minds"

Don't miss this one. Temple Grandin has taught all of us SO MUCH about autism. I love her emphasis on making the most of a person's strong interests and talents. I agree totally that the world NEEDS autism

National and state legislation regarding the use of restraints and seclusion:

My state (Wisconsin) is one of the many that is currently dealing with this issue. It is not surprising at all that people become very emotional when discussing this topic. Having been a teacher for about 30 years, I have some empathy for the stand of teachers and admininstrators that they have to provide a safe environment for everyone in their buildings. But I know that far too little is done to help teachers understand autism and act proactively to support students with serious differences in sensory processing, poor communication skills, and extremely high social anxiety. Restraint and seclusion are invariably over-used once they are introduced as acceptable policy. I am all for modifying the environment rather than focusing on modifying behavior. We must do more to educate everyone!

New Book from Amazon: "Autism and Talent" by Fransesca Happe and Uta Frith, eds.

This sounds wonderful. What is it about autism and genius/talent, anyhow? It's about time we recognize the rich resources of people with autism. Can't wait to see this book. But it is VERY expensive. I wonder if my local library will order it???

Disability Studies Quarterly/"Autism and the Concept of Neurodiversity" edited by Ralph and Emily Savarese:

Lots of great reading here. I will need more than a full day to absorb all this. Mark it as a favorite!

NPR interview (Ralph and Emily Savarese, Jamie Burke and others):

This is my personal favorite, but so far I have been unable to find it online. If anyone finds a link, PLEASE let me know!

Happy reading, listening, viewing

Those Repetitive (OCD?) Things That Drive Us Crazy

Kids with autism and other sensory impairments often develop repetitive behaviors. Some of these activities can become problematic in the home, school, or community setting. Some can even be dangerous to the child or those around him.

I could draw up a rather extensive list of the types of activities I have encountered over the years: lining up toys, sifting small objects through the fingers, looking at things at odd angles out of the corner of their eyes, spitting (and/or flicking spit - ugh!), screaming, eating non-edible items, and on and on.

Or I could ask those of you who live with a person who has autism to add to the list. I think we'd find a very, very long list with many commonalities and also many chosen behaviors or activities that are highly unique in nature. How many of you know a child who LOVES water play? What about a fascination with trains, doors, light switches, mirrors, Disney movies or Sesame Street?

I work with a young man now who has an intense fascination with bar code stickers and can't resist soda vending machines. I have heard recently about another young man who is repeatedly tearing his clothes. I am sure you get the idea.

What tends to happen is someone (other than the person with autism) decides the activity or behavior is interfering with "normal" functioning. But let's be careful. It might be that the behavior is different or not exactly socially appropriate, but unless it is truly dangerous in some way - such as jumping from a moving vehicle when it passes a vending machine or convenience store that is likely to have such a machine - I no longer am in such a hurry to remove these activities from the person's repertoire.

An example from my personal past: "J" was a cute, pleasant boy who was highly verbal and full of energy, almost always smiling and completely charming. He had gone through quite a few "obsessions" in his young life - including Matchbox cars, lightswitch boxes, laundry baskets, and clocks, among others. His family had been very tolerant and accepting, tending to add to his vast collection of all these items on a regular basis. As we gradually increased his level of inclusion in regular classes during his early elementary years, we (the IEP team of teachers, therapists, administrators and parents) decided that his newest fascination with jumpropes had to be eliminated. It is embarrassing to me now, but we were all in agreement that his habit of carrying a jumprope with him from room to room was somehow interfering with his learning, or maybe his social acceptance, or what????

Believe me, in looking back after all these years, this boy was learning ALL the time and everyone loved him. If those jumpropes were a problem, I am afraid it was the IEP team that owned the problem! But we didn't look at things that way back then, and the jumpropes became a major issue.

We came up with an ingenious plan to ever so slowly make that jumprope grow smaller, cutting a few inches from one end each day till there was nothing left. "J" played along with us, and seemed quite content, happily carrying the shrinking rope through the halls at school until it became so small that waving it in front of him no longer gave him the same pleasure or sense of security that it had in the beginning. And at just about that same time, his success in the school mainstream took a serious turn for the worse.

You see, "J" - whose autism is relatively mild - was living with a tremendouse amount of anxiety, and that jumprope was working better than any medication the pharmaceutical or psychiatric community might have come up with. We took it away, and he fell apart. Waving a jumprope might not be what other kids in the school were doing, but with the right intervention on our part as professionals, we surely could have helped his classmates accept that "J" needed that extra comfort item in order to be happy in school. After all, the kids loved "J" and wanted him to be happy; the rope was bothering US, not them!

Ripping up clothing or throwing a TV to the ground would fall in another category and would need attention before the added costs get out of control. Same for those behaviors that might hurt someone. We can't just ignore, or accommodate ALL preferred activities. I will attempt to address these more serious behaviors in a future posting.

Adding a meaningful communication system to the picture can make a huge difference. If we can find a way for the person with autism to give us some input and insight, maybe we can find a way to work together to choose which behaviors can be tolerated and which need to be replaced. If the child starts to sense that we are sincere in our desire to help and not just imposing the desires of the adults in his life, we can move forward in a spirit of cooperation and respect.

A reliable way of asking and answering yes/no questions is a good place to start: "Do you REALLY need that rope with you right now?" "Do you understand why we don't want you ripping your clothes?" Or maybe pointing to answers from a choice of two, three or four possible options might be possible. The idea is to involve the child in making the plan before changes. "J" was very young, but very wise, and should have been consulted before we took away his jumprope.

I visited "J" in his home several years later. He was thrilled to see me, and happily showed me his vast collection of clocks and other things. He never stopped smiling as he waved his newest jumprope and said to me, "Remember when we tried to get rid of my jumpropes? That sure was silly!" I had to agree.

Thanks for being one of my best teachers ever, "J!"

When you can't talk . . .

Throughout my life, I have had frequents bouts of laryngitis. My throat was definitely my weak spot as a child, and this continued well into adulthood. I often visited a doctor because the pain was so great, but it was never diagnosed as either tonsillitis or strep throat. What most typically happened was that after a few days of intense pain (mostly when attempting to swallow), I would just lose my voice. The pain was gone by then, but naturally the inability to speak drew attention to my discomfort. I always found that interesting - people hadn't been aware of the pain I was in just a day or two earlier, but once the voice was gone, I received lots of sympathy for my condition.

Interesting, too, that my chosen profession - teaching - usually requires one to be able to speak in a voice loud enough to be heard. But my specialty had become working with kids who themselves were mostly unable to speak, and so I could usually continue to work even if I was left with no voice at all. This presented yet another opportunity for me to personally learn some very valuable lessons.

First I learned that if I spoke in a quiet voice (by necessity in this case), those around me became much quieter as well. In my classroom, if I was quiet, there was a noticeable change - for the better - in the entire environment. The kids seemed to prefer quiet surroundings, even those who had a tendency to scream or make loud noises when things weren't going their way. In our quiet classroom with a whispering teacher, everyone became quieter and calmer. I tried to remember to keep my voice low and calm even when it was working just fine.

I also learned the power of the written word. So many of my kids who were on the autism spectrum were fascinated with letters and words. They loved it when I wrote what I wanted to say rather than speaking out loud. I learned to use this in one particularly challenging teaching situation where I was working with a group of very young students who needed my constant attention and direction to do even the most basic of academic tasks, while at the same time trying to keep an older, more advanced student engaged in work that was at his level. "R" could speak, and do some quite challenging school work, but was just as needy as the younger ones when it came to adult attention. I found it worked quite well for all of us to be sitting around a small table if I wrote messages back and forth to "R" while talking and interacting with the younger ones. If I hadn't been able to interact with "R" in this way, he would not only be unable to stay at his work, but he would have been constantly interrupting my work with the younger kids - and of course providing way too much in the way of distraction for them. It wasn't easy for me, since I had to be ready to read anything that "R" wrote for me to read, then write back to him almost immediately to get him started on his next task, without losing the attention of the younger kids or the focus of what that particular lesson was about. But it worked - multi-tasking at its finest!

By far the most important lesson I learned, one that still serves me well in my present day interactions with people who are unable to speak, was the utter frustration that comes with being unable to interact with other people. By definition, people with autism have problems with both communication and social interaction. Based on what I have experienced during bouts of laryngitis, I think I have some insights that might be worth sharing.

When I first started learning about autism, I defnitely made two very serious incorrect assumptions. I "swallowed" the idea that most of these individuals were also cognitively disabled to some degree, and I thought most of them spent much of their time in a world of their own - by their own choice. I certainly wasn't alone in my thinking, but I am now so firmly convinced that I was wrong, that I feel obligated to beg forgiveness from my early students and to beg the rest of you to give up both notions immediately (if they are still present in your thinking) and never, ever make that mistake again. I know it's hard for us humans to learn from the experience of others, but I implore you to believe me on this. These people are both intelligent AND social.

Consider this: I attended one of the early conferences devoted entirely to the relatively new phenomenon we have been calling Facilitated Communication. Most of those in attendance who were using the method were already adults. They had gone through their childhood years with essentially no means of communication, so the whole idea of conversing with others was new to them. Most people with autism are also dealing with a variety of sensory and/or motor issues that make "normal" living additionally challenging. Being in large crowds is just one example of a situation where problems often occur, and many families avoid travel, stores, sporting events and such largely because they have learned that these situations are extremely stressful for the person with autism - whether it be the sights, sounds, smells, or whatever that might be making things just a little too much to endure. At this conference --- in a modern, busy hotel --- in a very large room filled with round tables, I was blown away to watch as some 20 to 30 individuals sat quietly, each with their own facilitator, spelling out questions and answers in the most amazing roundtable discussion I have ever witnessed. And what did they want to talk about, now that they finally had a voice? Overwhelmingly they wanted to express their ideas, concerns, questions and dreams about friendships, dating, marriage and their future in the speaking world.

You see, not being able to talk has a way of making one appear to be uninterested in social interactions. I found that out firsthand. When I had laryngitis and could only speak in a whisper, it was definitely NOT fun to be out in a crowd. Even if my throat was not hurting, it was an effort to "speak" loud enough to be heard. If I were at a party, with many people talking at the same time, it was just about impossible to add anything to a conversation. When I did try to speak, I immediately became uncomfortable when the people around me became so unusually quiet - just to let me get my thoughts out. It simply wasn't worth it, and I preferred to be alone, at home, doing solitary things.

On one particularly memorable occasion, we were at a restaurant with friends. This time my voice was completely gone, and even whispering wasn't working. The idea of going out for breakfast had not been part of a plan; it just happened sponaneously after church, and I didn't really give much thought to the problems my temporary "disability" might cause.

We were with people we knew well - members of our church, all with kids around the same ages as ours, and all of us had been members of the same bridge group for many years. A very comfortable social situation, UNLESS you can't speak. Everyone had lots to say, and I was OK with just listening - except that every now and then I had something I thought was worth adding to the conversation. At one point, I reached into my purse for paper and a pen. Immediately there was silence as everyone at the table looked in my direction to see what I was doing, and then waited to hear what I had written. Midway through my efforts, I felt totally foolish - nothing I might have to say was worth all that! I laughed it off and gave up. That particular incident happened at least eight years ago and was memorable enough that I have never forgotten. When you can't talk, socializing isn't much fun. And even if you have an alternative means of communication, the effort it takes often doesn't seem worth it. Being "different" isn't fun and can certainly lead one to prefer being alone.

My experience at the FC roundtable discussion helped me understand why those in the deaf community often prefer to be among others who sign. It also showed me how important it is for the rest of us to respect the needs and wishes of those who use alternative means of communication. Whatever those means might be, they should be available at all times, in all settings. And what these people have to say should be treated with the untmost respect - a great deal of effort goes into putting their thoughts "out there" - what an insult it would be if what they are saying is dismissed as unworthy or invalid.

If you have followed the history of FC since its introduction some 20 years ago, you know that much of what has been said about the method is negative. Think about it, if you were the one spelling out your thoughts on a letter board or keyboard, only to have people roll their eyes or quickly dismiss what they are witnessing as a "hoax" - how long would you stay at it? Would you even try if you knew this was likely to be the outcome? What if you were dependent on a certain facilitator and that person was transferred to another position and no longer available to you - what would happen to your interest in being sociable? Think about it. I have been doing just that for many years now. Let's just move on and do what is right for these amazing people.