The key to un­lock their autis­tic son’s voice

Crit­ics call it un­proven, but Md. par­ents see a new com­mu­ni­ca­tions tech­nique as . . .

The Washington Post - - FRONT PAGE - BY MICHAEL ALI­SON CHAN­DLER

In a sci­ence class at Lake­lands Park Mid­dle School, 13-year-old Mike Keller sat be­tween his pro­fes­sional aide and his sci­ence part­ner dur­ing a les­son about how force af­fects bal­ance. The Montgomery County teen, who has autism, stood up a few times in a burst of en­ergy and once walked out of the room. But with some re­di­rect­ion from his aide, he ap­peared to fo­cus on a se­ries of ques­tions that his teacher posted on the white­board.

His teacher asked him an easy yes-or-no ques­tion at one point, and as an aide held a key­board in front of him, Mike typed the word “Yes” on the iPad, fol­lowed by a touch of sar­casm: “Duh.”

Mike is not able to speak. He points at let­ters on a lam­i­nated al­pha­bet board or types on a key­board that an aide holds. Na­tion­ally, most stu­dents who can’t talk are in self-con­tained class­rooms or autism pro­grams or, like Mike used to be, in a sep­a­rate school for stu­dents with se­vere dis­abil­i­ties.

But five years ago, Mike and his mother trav­eled to Texas to ex­plore a novel com­mu­ni­ca­tion tech-

called Rapid Prompt­ing Method that led to what his fam­ily de­scribes as a break­through. About a year later, he joined a new pi­lot pro­gram in Montgomery County Pub­lic Schools for autis­tic stu­dents who rely on key­boards and com­mu­ni­ca­tion part­ners.

Montgomery is un­usual, if not unique, in creat­ing such a pro­gram. Many schools have de­nied sim­i­lar re­quests for pro­grams that al­low rapid prompt­ing, or a sim­i­lar tech­nique known as fa­cil­i­tated com­mu­ni­ca­tion that was widely dis­cred­ited by the sci­en­tific com­mu­nity in the 1990s.

A gen­er­a­tion later, there is a resur­gence of non­speak­ing stu­dents who type to com­mu­ni­cate and rely on a com­mu­ni­ca­tion part­ner through var­i­ous tech­niques. Ac­tive com­mu­ni­ties of “typers” are grow­ing in South­ern Cal­i­for­nia, Michi­gan, Bos­ton, At­lanta and the D.C. re­gion, ar­eas where fam­i­lies have ac­cess to pri­vate train­ing. As their num­bers grow, more fam­i­lies are push­ing for their chil­dren to be in­cluded in pub­lic schools.

In an autism world with few doc­u­mented treat­ments and many high-cost prom­ises, the use of these tech­niques has stirred strong emo­tions. Crit­ics say they of­fer false hope to des­per­ate fam­i­lies, while ad­vo­cates ar­gue that they help some peo­ple and that it is wrong to stop ex­plor­ing the only means some may have of com­mu­ni­cat­ing.

In Ar­ling­ton, Va., the Autis­tic Self Ad­vo­cacy Net­work filed a dis­crim­i­na­tion com­plaint last spring with the Jus­tice Depart­ment on be­half of five non­speak­ing stu­dents whose re­quests to use let­ter boards and trained com­mu­ni­ca­tion sup­port­ers to ac­cess gen­eral ed­u­ca­tion were de­nied by the school dis­trict.

By deny­ing stu­dents their “pre­ferred com­mu­ni­ca­tion method,” the com­plaint stated, they are be­ing “pre­vented from com­mu­ni­cat­ing their thoughts, ideas, and feel­ings,” and “be­ing con­signed to an in­fe­rior ed­u­ca­tion with fewer op­por­tu­ni­ties and lower ex­pec­ta­tions.”

Brenda Wilks, an as­sis­tant su­per­in­ten­dent over­see­ing spe­cial ed­u­ca­tion for the Ar­ling­ton schools, said in a state­ment that the dis­trict “will con­tinue to ex­plore best prac­tices and ed­u­ca­tional re­search in this area as we eval­u­ate the use and po­ten­tial ben­e­fit of [Rapid Prompt­ing Method] and other re­lated method­olo­gies to sup­port our stu­dents.”

Crit­ics point to re­search that in­di­cates the tech­niques are not ef­fec­tive.

In re­sponse to an in­ter­na­tional resur­gence in the use of fa­cil­i­tated com­mu­ni­ca­tion, Ralf W. Schlosser, a pro­fes­sor of com­mu­ni­ca­tion sciences and dis­or­ders at North­east­ern Univer­sity, led a sys­tem­atic re­view in 2014 of more than 20 stud­ies of the tech­nique. It found over­whelm­ing sup­port that the fa­cil­i­ta­tor was con­trol­ling the mes­sage.

“In the field of aug­men­ta­tive com­mu­ni­ca­tion, we want to em­power peo­ple with dis­abil­i­ties to speak their own minds, so if some­one else is speak­ing, that is a big prob­lem,” he said.

But ad­vo­cates ques­tion some of the re­search method­olo­gies and say bet­ter train­ing and newer tech­niques, in­clud­ing rapid prompt­ing, of­fer safe­guards against fa­cil­i­ta­tor in­flu­ence.

Un­der­ly­ing the de­bate, some main­tain, is a fun­da­men­tal civil rights ques­tion.

“When He­len Keller first learned to com­mu­ni­cate, no one be­lieved her,” said Vikram Jaswal, a Univer­sity of Vir­ginia psy­chol­o­gist who has an ele­men­tary-aged daugh­ter with autism who he said is learn­ing to spell to com­mu­ni­cate. “We rou­tinely seg­re­gate peo­ple who can’t talk. Why do we as­sume they can’t learn?”

Dif­fer­ent ap­proaches

First de­vel­oped in Aus­tralia, fa­cil­i­tated com­mu­ni­ca­tion was in­tro­duced in the United States in 1990 when Dou­glas Biklen, a Syra­cuse Univer­sity ed­u­ca­tion pro­fes­sor, wrote about it for the Har­vard Ed­u­ca­tion Re­view.

It was em­braced en­thu­si­as­ti­cally as a mir­a­cle tech­nique that could un­lock the po­ten­tial of peo­ple who had been writ­ten off as very low func­tion­ing. There were me­dia re­ports of peo­ple pre­vi­ously thought to be men­tally re­tarded grad­u­at­ing from high school or writ­ing lyri­cal po­etry.

In fa­cil­i­tated com­mu­ni­ca­tion, a trained fa­cil­i­ta­tor helps the non­ver­bal per­son type by sup­port­ing their arm, wrist or hand. It is based on the theory that autism has a sig­nif­i­cant mo­tor com­po­nent, and many have dif­fi­culty with in­ten­tional move­ment and so need phys­i­cal sup­port to demon­strate what they know.

Syra­cuse es­tab­lished an In­sti- tute for Fa­cil­i­tated Com­mu­ni­ca­tion and trained thou­sands of fa­cil­i­ta­tors, many of them pub­lic school ed­u­ca­tors, from across the coun­try.

Its down­fall was swift and steep. A se­ries of con­trolled stud­ies in the 1990s found strong ev­i­dence that the com­mu­ni­ca­tion was ex­tremely sus­cep­ti­ble to fa­cil­i­ta­tor in­flu­ence. In so-called mes­sage pass­ing tests, when the sub­ject was asked about some­thing that the fa­cil­i­ta­tor could not know, the re­sponses were rou­tinely in­ac­cu­rate. Re­searchers found that fa­cil­i­ta­tors were un­aware they were in­flu­enc­ing the re­sponse.

At the same time, in dozens of cases, non­ver­bal peo­ple made ac­cu­sa­tions of sex­ual as­sault through their fa­cil­i­ta­tors. Some highly pub­li­cized al­le­ga­tions in­volved a par­ent or fam­ily mem­ber. Judges found these claims to be false, and the fa­cil­i­tated mes­sages un­re­li­able.

By 1994, the Amer­i­can Psy­cho­log­i­cal As­so­ci­a­tion adopted a po­si­tion state­ment op­pos­ing the use of fa­cil­i­tated com­mu­ni­ca­tion. Other pro­fes­sional or­ga­ni­za­tions fol­lowed suit.

Pub­lic schools, for the most part, closed their doors tight to the prac­tice.

The cen­ter at Syra­cuse never closed, although it changed its name to the In­sti­tute on Com­mu­ni­ca­tion and In­clu­sion. And Chris­tine Ashby, its di­rec­tor, said that in­ter­est in fa­cil­i­tated com­mu­ni­ca­tion did not go away and has in­creased in re­cent years.

A hand­ful of school dis­tricts — in­clud­ing those in Syra­cuse, N.Y., Barre, Vt., and Whit­tier, Calif. — have trained teach­ers and sup­ported stu­dents over time, Ashby said. But most con­sid­ered each case in­di­vid­u­ally and pro­vided ser­vices qui­etly.

The in­sti­tute pro­motes stan­dards of prac­tice de­signed to re­duce the chance for fa­cil­i­ta­tor in­flu­ence, in­clud­ing pro­vid­ing the least amount of phys­i­cal sup­port pos­si­ble, and train­ing typers to work with mul­ti­ple fa­cil­i­ta­tors, Ashby said.

“It grew too fast, with­out the right pro­ce­dures in place, and a lot of poorly trained fa­cil­i­ta­tors,” she said.

At the same time, rapid prompt­ing, which is not taught at the Syra­cuse in­sti­tute, has gained trac­tion among non­speak­ing peo­ple with autism.

The ap­proach was pop­u­lar­ized in the United States by Soma Mukhopad­hyay, a chemist by train­ing from In­dia who ded­i­cated her life to ed­u­cat­ing her autis­tic son.

Prac­ti­tion­ers say the ap­proach is fun­da­men­tally dif­fer­ent from fa­cil­i­tated com­mu­ni­ca­tion be­cause, in rapid prompt­ing, an aide typ­i­cally holds a key­board but does not touch the per­son typ­ing.

The process in­volves us­ing ver­bal en­cour­age­ment and tac­tile stim­u­la­tion de­rived from hav­ing some­one hold the board. Such prompts are sup­posed to help the per­son ini­ti­ate move­ment and stay fo­cused on typ­ing de­spite sen­sory dis­trac­tions.

There is very lit­tle re­search on rapid prompt­ing, in part be­cause Mukhopad­hyay has re­sisted par­tic­i­pat­ing in stud­ies.

Crit­ics say this method is also highly sus­cep­ti­ble to fa­cil­i­ta­tor in­flu­ence. They de­scribe it as a process of learn­ing to re­spond to in­creas­ingly sub­tle cues.

Howard Shane, di­rec­tor of the Cen­ter for Com­mu­ni­ca­tion En­hance­ment and the Autism Lan­guage Pro­gram at Bos­ton Chil­dren’s Hospi­tal, ques­tioned the va­lid­ity of any com­mu­ni­ca­tion method that re­quires the phys­i­cal help of some­one else.

“We have five dif­fer­ent ways of con­trol­ling a com­puter with your eyes,” he said. “We can most of the time find some way for them to com­mu­ni­cate in­de­pen­dently.”

Shane said he has seen non­ver­bal autis­tic peo­ple cre­ate full sen­tences in­de­pen­dently but has never seen high lev­els of in­tel­lect sud­denly un­locked.

Matthew Bel­monte, a neu­ro­sci­en­tist at Not­ting­ham Trent Univer­sity in Bri­tain and a vis­it­ing re­searcher at a Ban­ga­lore clinic that teaches com­mu­ni­ca­tion tech­niques sim­i­lar to rapid prompt­ing, said the method’s the­o­ret­i­cal un­der­pin­nings are sound and some non­speak­ing peo­ple with mo­tor im­pair­ments can po­ten­tially ben­e­fit.

Re­search is needed, he said, to as­cer­tain whether, for whom and in what con­texts the tech­nique works, and to im­prove and au­to­mate the process.

“We have to be very care­ful if we are deny­ing the ve­rac­ity of po­ten­tially the only means of com­mu­ni­ca­tion that some peo­ple have,” he said.

‘He had been there all along’

In the decade af­ter her son’s autism di­ag­no­sis, Lori Mitchell­nique Keller spent un­told hours pur­su­ing treat­ments.

“I can count on one hand the things that worked,” she said.

Then in 2012, she learned about Mukhopad­hyay, who teaches her method to a grow­ing list of fam­i­lies from an of­fice in Austin.

Mitchell-Keller ar­ranged for Mike to take lessons from her over the course of a week.

The re­sults as­ton­ished her, she said. It ap­peared to her that Mike not only knew how to read and spell but that he also had been far more than they had imag­ined.

“I re­al­ized he had been pay­ing at­ten­tion, he had been there all along,” she said. Back at home, their fam­ily trans­formed as they got to know a boy who, his mother said, is bright, spir­i­tual and af­fec­tion­ate.

Mike joined the Montgomery pi­lot pro­gram and en­rolled in typ­i­cal fifth-grade classes. The pro­gram started in fall 2013 with five boys, some us­ing fa­cil­i­tated com­mu­ni­ca­tion and some us­ing rapid prompt­ing.

A few more stu­dents have been added since, but the pro­gram will re­main small with­out fur­ther ev­i­dence of the ef­fec­tive­ness of the tech­niques, said spe­cial ed­u­ca­tion di­rec­tor Philip Lynch.

Of­fi­cials are mon­i­tor­ing the stu­dents for progress to­ward in­de­pen­dent com­mu­ni­ca­tion, as well as so­cial and emo­tional progress, Lynch said. He noted that Mike had made friends at his school and said: “How do you mea­sure the im­pact of be­ing in­com­pre­hend­ing cluded in your pub­lic school?”

Af­ter four years of prac­tice, Mitchell-Keller said her son is mak­ing progress to­ward fully in­de­pen­dent com­mu­ni­ca­tion. He is now able to type with­out some­one hold­ing the key­board, although the process tires him much more quickly, she said.

On a late Novem­ber af­ter­noon, Mike sat with the key­board on the kitchen table in front of him and an­swered a few ques­tions from a re­porter about his Thanks­giv­ing.

“My thanksngi mm. was golden,” he typed.

“my cousin Theo” vis­ited and “re­ally had great trimester here,” he wrote, with auto cor­rect fill­ing in the word “trimester.” “HE IS FROM. MINNESOTAN,” he wrote.

He yawned widely while he slowly typed the let­ters and hit the backspace key and typed again.

Mitchell-Keller, who trav­els ex­ten­sively for work, said her son has worked with dozens of com­mu­ni­ca­tion part­ners. When she is with him, she usu­ally holds the key­board, but this time she sat next to him with­out touching it. She re­minded him to sit up straight, and she read the let­ters he typed aloud and en­cour­aged him to keep go­ing. She kept one hand on the edge of the table or un­der­neath it. With the other, she held the tip of his col­lar be­tween her fore­fin­ger and thumb.

“I am not even sure he feels it. I am not touching his skin, but I think it gives him a level of re­as­sur­ance,” she said. “He’s not all on his own. There’s a life­line there.”

SARAH L. VOISIN/THE WASH­ING­TON POST

Mike Keller, a teenager with autism, watches a video with his brother, Jake, 17.

SARAH L. VOISIN/THE WASH­ING­TON POST

Mike Keller, a teenager with autism, lis­tens to his sci­ence teacher at Lake­lands Park Mid­dle School in Gaithers­burg, Md. Mike, who is non­ver­bal and com­mu­ni­cates by spell­ing words on a key­board, was able this year to “talk” for the first time us­ing a...

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