Ben Golden - Communication Systems

Ben Golden - Communication Systems

revised 14 January 2015

a.  Communication Systems - Currently Ben uses two Communication Systems:

 

1)  Gesturing - which is spontaneous, completely independent, includes shaking his head "yes" and "no" (since age 9) and some basic Sign Language. With people that he connects with, Ben understands English and Hebrew that is spoken to him and responds with his Gesturing to express his basic needs. If Ben has not connected with a specific person, Ben seems to completely ignore that person. Some persons he never connects with, others he may connect with immediately and most persons he connects with over a period of months.

2)  Facilitated Communication (FC) – FC is only used by Ben for more sophisticated communication that cannot be expressed through Gesturing. Usually Ben insists on physical support at the level of his hand and refuses to try to fade support to strive for physical independence, with the preference for a letterboard and avoiding verbal feedback except it needed at the end of a sentence. Within the past 2 years, Ben tried an ipad, using a program with word prediction and was able to fade support to being touched on his upper arm over a period of about 3 months, but since he did not progress to being completely independent, he asked to go back to using the letterboard.

 

b.  Overload - "Overload" seems to have been a fatal obstacle in Ben learning some other Communication Systems. Such "overload" seems to be an aspect of his severe autism.  In the Fall of 1977 at age 5-1/2, Ben began to learn Sign Language at LCDC in Boston, directed by Dr. Arnold Miller and his wife Mrs. Eileen Miller SLP.  After nearly 2 years, Ben had been taught well over 100 signs (although only some were spontaneous), but then at age 7 in the late spring of 1979 had a severe regression, almost entirely losing this Communication System.  Then going to the May Institute (a residential placement 100 miles from our home using a strict behavioral approach, now called ABA) in June 1980 at age 8, Ben learned a similar type of Sign Language, which in January 1982 continued in a special class in our neighborhood public school, again being taught over 100 signs but at age 10 in the late spring of 1982 had a severe regression, almost entirely losing this Communication System.  Then going to an inclusion program in another local public school in September 1983, Ben began to learn picture communication in a program designed by Dr. Howard Shane of Boston Children's Medical Center, progressing to a large manual board of well over 100 Mayer-Johnson symbols, but at age 13 in the late spring of 1985, had a severe regression, entirely losing this Communication System.  Using his type of Facilitated Communication (FC) starting in April 1994 at age 22, Ben quickly was able to use very sophisticated language with a huge vocabulary, and now for over 20 years Ben has never had the severe regressions he had with previous Communication Systems.  I am concerned that the previous severe regressions were caused by "Overload" but I have no proof of the actual problem.  It should be noted that Ben has insisted on certain unique practices in his use of FC which appear to be intended to prevent Overload, especially his insistence on physical support and refusal to strive for physical independence, except in recently trying the ipad, which he stopped after only about 3 months. 

c.  Motor memory - Even as an infant, it seems that Ben had a good motor memory so he learned to drink from a cup at age 9 months despite life-long hypotonia.  In the summer of 1988 at age 16, a behaviorist tried to show Ben how to use a pricing gun as part of his summer job with a 14 year-old boy as his job coach.  It seemed that Ben had no comprehension of using a pricing gun the first day and the behaviorist planned to design a backward-chaining behavioral program.  However, the next day with only the 14 year-old job coach present, when handed the pricing gun, Ben was able to independently put the price label on the proper place on entire boxes of merchandise and then with minimal prompts to get started, placed the merchandise on the shelf with the front label showing forward.

 

Note added 11 March 2015:

 

d.  Speech sounds.  Although I would describe Ben as a person with nonverbal autism, I believe that by age 5, after a moderate effort in his preschool program for over a year, Ben would occasionally initiate or repeat (not daily) and it seemed without any communicative intention (except sometimes n and y for no and yes), the following few sounds:

 

ah, b, ee, m, n, y

 

When such moderate efforts ended (such as the 3 years at LCDC ages 5-1/2 to 8-1/2), even these sounds would largely disappear.  They re-appeared when moderate efforts were made at the May Institute starting at age 8-1/2 where he attended for 1-1/2 years and at the Higashi School starting at age 13-1/2 (but not continued when no progress was made).  Although Ben never got very far with speech, it is possible that my note above as b. about "overload" may apply.