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Autism and the Keyboard: What's Your Experience?

By February 24, 2008

Carly Fleischman is a 13-year-old girl with autism. In the past few weeks, thanks to an ABC-News story, she has become something of a celebrity. Carly, like many people with autism, has learned to communicate with the wider world by using a computer keyboard rather than her voice. And, like many people with autism, it seems she has a lot to say.

Carly, of course, is not the first person with autism to spell out her thoughts and ideas. Whether by pointing to letters written on cardboard (the Rapid Pointing Method), typing with support (Facilitated Communication) or simply typing as Carly does, many non-verbal people with autism have proved their intellectual capabilities to the wider world.

While the validity of "facilitated communication" (typing while one's arms are physically supported by another person) is questionable, it does seem that at least some non-verbal people with autism are ready, willing and able to communicate -- and do so the moment they have the means. This is, of course, very exciting to a lot of families who hope that underneath the confusing behaviors and lack of affect there really is a thinking, loving human being!

Oddly, to me, those people with autism who have made their "voices" heard have used the most basic tools to do so: a piece of cardboard, a simple keyboard, a typewriter. Yet so far, while expensive assistive technology devices are available to some people, and picture communication is used to connect with young children, it is NOT standard procedure to teach non-verbal children with autism to type!

I don't mean to sound simplistic, but wouldn't it make sense -- instead of, or in addition to intensive therapies -- to teach non-verbal people with autism to use a keyboard? What in the world is standing in the way of that simple, low-cost approach to communication?

What's your thought on this issue? Are there thousands of people just waiting to connect with the world -- but unable to do so because they simply can't type yet? Why do you think this very simple, low-cost approach is so underutilized?

Comments
February 24, 2008 at 12:58 pm
(1) Blanche Nonken says:

Because using a typewriter requires learning the alphabet, learning how to read and write. Learning how to transferthe abstract and subjective “emotion” to the concrete and objective written word.

My 12 year old daughter is autistic, and she can both read and write – and type. But she hasn’t yet learned the value or gained the desire to express her own feelings or personal communication in writing. She’s functioning in that respect at about a 7 year old level, eventhough her reading and “word attack” skills are at or above age and grade level, her comprehension is still fairly low. It will come with time.

As a toddler we first started her on PECS – the Picture Exchange Communication System which in 1998 was still fairly new. For children who are non-verbal it’s a good way to start language development before moving on to alphabet and written language skills.

Assistive communication tools might seem expensive and over-complicated, but when you have a non-verbal pre-teen or teenager who wants to communicate and needs several thousand symbols in his or her language, a hand-held Palm-based unit beats a briefcase full of 3 ring binders loaded with image cards.

February 24, 2008 at 2:45 pm
(2) DebiDee says:

I can only judge from my own experience but YES, I would say keyboarding should be taught if the aptitude is there. My son learned how to crack into the cd reader on our computer by age three. How I don’t know, could have been by a fluke. He was/is proficient well above age level by more than a year or two in computers, math and science. My son could not say “I love you” until he was aged 4. Yes, I think any learning tools that a child has an aptitude for should be used!

February 24, 2008 at 7:17 pm
(3) David says:

Describing facilitated communication (FC) as “typing with support” is like describing holding an infant upright while it makes walking movements with its legs as “walking with support.” All of the scientific evidence to date proves beyond a shadow of a doubt that in FC it is the facilitator who is typing. I’m guessing it is the same with the so-called rapid prompting method. The only valid use of a keyboard for anyone, autistic or not, is completely independent typing. Anything less is exploitation of the individual.

Moreover, despite the appeal, especially to family members, the notion that nonverbal individuals diagnosed with autism are verbally articulate individuals trapped inside nonworking bodies is also a myth of mythical proportions.

February 24, 2008 at 8:11 pm
(4) DebiDee says:

With all respect and regard I would have to disagree with you, David.

I can’t jump into anyone’s mind to know what they are thinking or know what they have to say nor do I know anyone with that capability.

Stephen Hawking he is unable to type now but his mind is still brilliant. How do we know this? Because we knew him before and he has an aid who VERY patiently types out what he is trying to communicate.

The “walking with support” could also be someone with a walker or crutches and with enough support may be able to walk alone at some point.

If someone is non-verbal at diagnosis does that mean they will always be non-verbal? I’m sure Helen Keller is glad she had a teacher who cared enough to try. Yes, that is a success story and she didn’t have autism (that we know of) but what does it hurt to try?

If I took my son and blew up all his ids I could see him easily as someone who couldn’t communicate because the noise alone would make him scream and head bang. I have no doubt about that, NONE.

So I CAN conclude that non-verbal individuals diagnosed with autism COULD BE verbally articulate individuals trapped inside their ids. Yes, it is VERY easy for me to imagine.

February 24, 2008 at 8:40 pm
(5) Jas says:

The question is: “Why do you think this very simple, low-cost approach is so underutilized?”

The issue really is that we are getting far ahead of ourselves. In the case of Carly, no one has yet done a real assessment to determine if her typing is authentic. That is, there has never been a definitive double-blind study of authorship to determine where Carly’s skills end and influence, in any, starts. So far, all the claims about Carly sound exactly like the claims about facilitated communication and Rapid Prompting: Sudden literacy with everyone insisting that the communications look like they are not being influenced. But the fact that no one is touching Carly during typing doesn’t mean the communications are not being influenced. Years of interaction through ABA (or anything else) would be more than enough to teach unconscious cueing of the kind of typing Carly is doing. The parents and speech therapist say they are aware of the possibility of controlling the output and are “careful” to prevent themselves from doing it. But being aware and being “careful” are not enough. Virtually every facilitator who has been shown to be unequivocally controlling the typed output through facilitated communication was aware of the possibility of influence and claimed to be trying to avoid it. Yet, in every published case of FC that influence has been directly tested for, it has been found.

There are also real dangers with the careless application of this kind of technology.
Even if a child can communicate a little through typing, there is just too much chance of influence developing later and taking over. If our tragic experiences with facilitated communication are any indication–not to mention the cavalier way Rapid Prompting is being uncritically accepted–everyone will be eager to believe everything that comes from the keyboards and no one will take the time to determine where the messages are really coming from. Consider the current tragedy in Michigan in which the the parents of a girl with autism have been accused
of abuse through FC
done at a school which never once, in three years, tested the authenticity of the communications. The irony is that not only did the prosecution’s own expert, an FC advocate, say that the typing could not be trusted, the girl failed two in-court tests of communication. Yet, the school and prosecution believes the typing, and the case goes on.

The final issue is independence. Some people will always need technologically based augmentative communication devices. I would like to believe that Carly is genuinely making use of her keyboard to communicate her own ideas. Thus, typing may be one method. But it should not be the preferred method. Most people who have autism can speak vocally, and, if they are capable, should be encouraged to use that modality so that they can achieve the fullest possible independence. The worry is that the premature application of a technique which does not promote full independence will delay or prevent the person with the communication difficulty from becoming a fully independent member of society.

February 24, 2008 at 8:44 pm
(6) Caroline says:

I believe that typing should be taught…at a similar time as the alphabet! The boy I work with, he uses a wide variety of spelling options, depending on how his day is. We use IntlliKeys, Clicker 5, wooden letters (with magnet on the back so that they can stick to a magnetic sheet while on his raised easle), his TechTalk and his Vantage (the last 2 are assistive communication devices).

I don’t know why things are so backwards in regards to typing, because in reality, for a lot of our kids, that is where it’s going to be at. It’s important to be able to print, but a lot of our kids have such poor fine motor strength but are extremely computer savvy that it’s a shame computers/keyboards are not used more.

It’s not a simplistic question that was asked…it’s a realiztic one that is being over-looked.

Caroline

February 24, 2008 at 10:32 pm
(7) autism says:

Jas – just a note to say that teaching folks to communicate without speech does not appear to further delay use of speech itself. I say this based, in part, on an interview with creators of the PECS picture exchange system. They didn’t intend to promote speech at all — but found that when therapists responded to picture cards with both cards and words, children seemed to build both PECS-based AND speech skills.

There’s no good research to explain just WHY this works — though I’d guess that the very positive response they receive, along with the fact that their communication becomes more effective, makes the difference.

One of the great plusses to providing ANY tool for communication is that the level of frustration immediately drops radically. The person with autism is able to communicate needs/desires, and get those needs/desires met. With a lowered level of frustration comes a greater ability to attend, engage, learn and develop new skills.

Best,

Lisa (autism guide)

February 25, 2008 at 1:04 am
(8) Jas says:

Lisa:

Thank you for your comments. I am well-acquainted with PECs, know the creators, seen it used, and evaluated its use. The problem is, as you say, the lack of research. There has been more done on PECs than some other approaches. But, like other “verbal behavior” approaches, not enough, especially when compared to discrete-trial therapy.

Even so, I don’t think there is much mystery about why PECs would work or why a vocal repertoire might spontaneously arise in someone using a non-vocal communications system. One of the fundamental goals of all well-conceived behavioral interventions is to teach the person to become sensitive to social reinforcement arising from the behavior other people. The lack of sensitivity to social reinforcement is fundamental to autism and responsible for many of the things we see people with autism do. Establishing other people as sources of reinforcement will cause the person with autism to engage in all kinds of new and useful social behavior, including using symbols to communicate needs. PECs then expands upon the use of symbols to build a practical communicative repertoire. However, we should remember that behavior comes in functional classes. If the vocal behavior arises with the same function as the symbols, it can be used interchangeably with the symbols or in place of them. Since vocal behavior is so much easier and more portable, it is likely to be the mode of choice if the option exists. Consider the following analogy. If you learn turn right at he end of the hall to get to the bathroom when walking, you won’t have to re-learn turning left if you are in a wheelchair. The response class is turning. You will engage in whatever physical form of the behavior it takes to make the turn. Sometimes we speak. Sometimes we type emails. The same message is sent. I am not saying anything new. I am paraphrasing Skinner’s Verbal Behavior (1957)–a book finally coming into its own after half a century.

The problem comes when there is too much hope place on the spontaneous acquisition of vocal speech when teaching something else. Sometimes it happens. Usually it does not. It has to be taught. The problem comes when the augmentative communications is used without attempting something else. Most professionals who do these things don’t make that mistake. However, in an environment where so few states support quality behavioral interventions, people with little or no training have to do it themselves, or put up flyers to hire whoever at the local college might have the spare time and inclination to help, regardless of training. It will not be helpful if, due to media hype, we just put keyboards in front of people who can’t talk. The dangers of recreating the problems of facilitated communication and rapid prompting are, as we’ve seen, very real. But, the more fundamental issue is determining exactly best tactic to take when teaching communication to those who don’t seem to do it. Just because someone doesn’t vocalize at all doesn’t mean they can’t be taught to talk.

Thanks again for your thoughts, and good luck with your work.

February 25, 2008 at 11:26 am
(9) Charmian Neary says:

I’d like to reassure parents of young children with Autism. My son is 8 years old now and fully mainstreamed. He is at or above grade level mostly, with some deficits typical if Autism (gullible, rigid etc.).
He is now what you would call “indistinguishable” – but to those of us within the community, his Autism is still obvious.
My point is, we used any and every method to encourage speech…sign language, PECS everything. Nothing slowed his speech aquisition…they ALL HELPED.
Do whatever keeps your child interested and present, so they don’t drift off to that place where autistic kids like to go.
Your kid will talk…just keep him interested and use his obsessions to get to speech. My son speaks beautifully now. PECS, key boarding, sign, whatever. Don’t be afraid of anything.

February 25, 2008 at 12:09 pm
(10) Scott says:

Facilitated communication arose in part because one of the largest barriers to communication for autistic individuals is dyspraxia (challenges in motor planning due to cerebellum neurocognitive operation). The premise was that supporting an individual while typing would offset some of the dyspraxic challenges that many autistic individuals faced in communicating.

Most of the studies on facilitated communication’s problems were done many years ago (in the ’80s in many cases).

Those studies’ results should be looked at with some healthy skepticism because they contain some major errors, namely lack of control for the factor of an individual’s anxiety in communicating in a laboratory setting and anxiety in using a different facilitator to communicate in the lab setting along with generalized anxiety of being suddenly placed in a new environment.

The academic literature and personal experiences of autistic individuals clearly point to a very high level of anxiety (generalized and social) among the autistic population. That’s certainly the case for myself as an autistic person with generalized anxiety, social anxiety, and recurrant depression.

Additionally, such things as selective mutism (in which individuals may feel comfortable speaking in some environments but not others), shyness, and social phobias among the general population and the population of folks who have disabilities clearly point to the effect that high anxiety can have on stifling communication and interaction with the world.

Overall, the studies on FC reflect how it’s not always easily possible to investigate something in the laboratory that happens in the real world. Now, don’t get me wrong. I do understand that FC has sometimes been abused by facilitators. Some FC facilitators have taken advantage of the control they have (their power status) to harm the individual psychologically or in other ways.

Yet, I also know that many folks have found great success with FC, including a large number of folks who have gone from FC to communicating without support. The utility of FC lies somewhere in the middle. It’s certainly not a communication panacea, but it’s also not the unusable approach that many folks make it out to be. It’s a valid support option to consider just like many other options out there.

Scott

July 25, 2008 at 12:56 pm
(11) bethe says:

as a speech-language patholigist, I work with young children, many of whom have moderate to severe motor planning diffculties. Many parents become very fearful that we are giving up on their child’s ability to speak, when we recommend the use of sign and or any pictoral system. I always encourage parents to use any system. Communication is the key, and jas noted, the easiest system becomes the default. And the children know that they a backup if their speech is not yet clear enough.
Signing totally opened up speech for one of my children, while reading and typing did it for another. The rewards of being understood lead to greater use of any and all means to that end. I am a PROMPT therapist who specializes in motor speech disorders, and I use every technique available, keeping my eye on the prize of speech, even if it seems remote. Communication is the real prize.

October 9, 2008 at 5:46 pm
(12) barbara myers says:

WHAT IS THE BEST, MOST COMPACT AND EASIEST FC KEYBOARD TO USE

October 31, 2008 at 1:38 pm
(13) Char Brandl says:

Portable keyboard suggestions: basic paper letterboard (laminated and reinforced if possible); AlphaSmart/Dana/Neo; Lightwriter.
Good luck!

January 13, 2009 at 4:20 pm
(14) Stephen says:

Your ignorance about autistic issues is quite profound. You should talk to one of your friends or neighbors who have autistic kids before posting an article like this.

There are autistic kids who can read, write, type, recite, and quote Shakespeare all at the same time that still cannot answer a simple question like, “What just happened?”

Sadly, it is your lack of understanding and the same lack shown by the majority of the American public that keeps us from doing significant funding for research on autism. As all parents of autistic kids know, something causes it–and something can cure it.

February 27, 2010 at 11:03 am
(15) Ross Coe says:

Whats SAD is that people accept the label autistic/autism, and create this “its a natually occuring condition” phenomenom, where society ignores what it really is (vaccine side effects) and rather that going to war with vaccine producers, they complacently allow themselves to be dupped into thinking its genetic or some other dubious cause. You’ll never sort the issue out without beginning with the truth. Parents are left to deal with these side effects for the rest of their lives while perpetrators get pats on the back for being humanitatians and reap huge profits.

August 3, 2010 at 11:12 am
(16) Ellie says:

I thought the miracle of her behaviour was that she had not been taught to type or even to read, only to make image/word connections. Even when she started to type, to ask her to do so was a different thing, I believe that took months.

I agree therapy should think more latterally about the process of comunicating with autistic children. Indeed, most of their behaviour exhibits frustration, and once carly was communicating, she seemed less frustrated, and more in control of her behaviour. She says at one point that when she looks at a persons face it is like her mind is taking a thousand pictures, and that is why it is hard to look at someone. Perhaps then if the emphasis moved away from multisensory communication methods ~(talking involves aural and ocular stimulation) that would help a lot. Communicating only in sound, words, maybe even expressionless words. Communicating only in movement… only in letters, so as not to overwhelm and frustrate the autistic child.

I watched my cousin grow up with autism, and it was heart rending, because when an autistic person is related to you you never stop looking for the human being, you dont even need to, you are there and with them and it frustrates you too attempting to communicate with them. Their condition is the suffering of the physical manifestations of frustration. If we can avoid adding to the frustration by trying to bring autistic communiction in line with the “norm” then i think that would be a major breakthrough. Indeed, it is the view that an autistic person is not normal, or cannot be normal, that needs to change.

September 20, 2010 at 1:54 am
(17) Ingrid Julyk says:

There are some very profound thoughts here. It is baffling to me why some people live to debunk the glimmers of hope and truth sought after by families dealing with autism. Scott made an excellent point when he described how anxiety and social phobias affect communication. Stephen’s comment also nails it- a person can recite Shakespeare and not answer the question “What just happened?”
There is so much more going on here than perfecting the motor skills necessary to type. I would like to add my own take on the author’s original question as a mother of a child with autism. He’s almost 7, sweet, brilliant, and nonverbal. In his case (he is *not* a sensory-sensitive kid) the computer monitor proved to be too distracting for him to focus on typing when we first tried it. I tried to connect for him that he could just type “DVD” and then get what he loves most for doing so. It seemed so simple! As usual, I was the one in for a lesson.
Not only is it hard for him to track his eyes up to the screen and back down to the keyboard, but he’s a future computer geek and he knows how many more interesting things there are in that computer beyond typing his requests and feelings.
After spending over a year with our own version of facilitated communication, he is finally willing and able to type a little on my laptop. When I finally tried the “acoustic” version of a keyboard a year ago, he didn’t even let me finish making our first (cardboard) letterboard before grabbing it and typing “DVD.”
Now, flash forward a year, we have started an exchange where he will type if I show him how to use the laptop and navigate the web. His first Google search was for “MUSIC” and the second was for “MOZART.” He has opened my ears to opera music. Go figure.
Thank you, Lisa, for posing the question in the first place! It was one of the more positive things I found in my own Google search for help connecting my unique boy with the world.

April 24, 2011 at 9:45 am
(18) sysyfus says:

ASD people who are mute or functionally non-verbal are put into classes for the Developmentally Delayed (DD) as it is assumed they are very low functioning. there is no curriculum for DD students, no program to actually teach them how to communicate.

Contrary to what someone wrote beow, over 50% of Autistic people are mute or functionally non-verbal. Those who master a communication program prove, on average, to function at 4 grade levels higher than what the school system assumes.

regarding Carly Fleishman, people miss the two most important poins.
(1) Carly’s training was done privately at great expense because the public school system does not provide this training!
(I can’t afford it, so my daughter doesn’t get this opportunity)
And
(2) ASD people who master a comm. System, on average, perform at least 4 grade levels higher than assumed! I am certain that Carly was inclasses for Developmentally delayed until she was keyboarding– and now she is working at her grade level with her peers, in fact taking some GIFTED courses!!! Had she NOT learned keyboarding, she would be rotting away in a DD class!!!!

Guess how many studens are rotting away in DD programs ecause they don’t have teachers who are teachi g them to communicate? no doubt there are hundreds of these people.

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