Michael is my older brother who has never spoken and is autistic and low functioning. He was a patient at Willowbrook, a state mental institution, which used to be on Staten Island, New York, and was home to 6,000 patients. After Willowbrook was shut down for widespread abuse, my brother was placed in a group home.
Annual review
I attended Mike’s annual review 1992. The staff covered everything, from head to toe: the condition of his feet, medications, incidents (including the 8 stitches he had to have as a result of another client’s frustration with him – another story), reports from psychologists and social workers. A social worker noted that Mike’s old institutional behaviors were disappearing and he was becoming calmer. Mom and Dad were at the review too. Dad said that Mike right into his eyes. He said that Mike had never done that before. Mom said that Mike seemed much more alert.
One recommendation from the review was for Mike to try ‘facilitated communication’. According to the notes I made at the meeting, facilitated communication consisted of
“sheet w/letters, “yes”, “no”. guide hand to correct letter.”
What is facilitated communication?
The staff gave me a packet of information from the Autism Society of America. Their definition reads:
“Facilitated Communication is a technique by which a person, often called a “facilitator”, supports the hand or arm of a communicatively impaired individual, enabling the person to extend an index finger in order to point to or press the keys of a typing device and thus to communicate.”
[Note: I received paper handouts, but I have not been able to find a link to ‘facilitated communication’ on the Autism Society website. I believe that the Autism Society of America is now the Autism Society.]
If they think Mike can do this, who am I to argue?
Mike and facilitated communication
The day after his review, I went to Mike’s group home for a visit and to try facilitated communication, using a board displaying a matrix of letters. The following are my notes made at that time:
“After lunch, when M___ [the counselor] came in, she explained the communication board to Mike. M___ is very optimistic in my opinion, and perhaps reads a little more into things than what actually happens. She went through the alphabet with Mike, pointing to each letter. Then she spelled his name with him. Then she asked him to spell his name. She said that he did. She was excited. S___ [another counselor], who was skeptical, tried assisting Mike in the same task and he spelled his name again. He seemed to be calmer during this whole period of time and for some time thereafter. I am still skeptical. One reason is he never looked at the board. Another is, nobody ever taught him how to spell. M___ tried teaching him the word “slinky” [Mike’s favorite toy] and she thought he actually spelled it one time (after she spelled it out first)”
My reaction
Phooey!
I have not researched facilitated communication much further than the definition. This technique probably has some merit for high functioning autistic people or those with minimal muscle control. But for my brother; my brother who had never looked into my father’s eyes until he was 53 years old? Ridiculous!
I was more angry than disappointed. Once again, the tantalizing prospect of a window into my brother’s mind was a bunch of baloney. The technique was no better than a ouija board. Instead of speaking to the spirit of my living brother, I was presented with letters chosen by the spirit of the well-intentioned counselors.
Sounds Like, as I refer to, an Astrological technique. “Ouija Board”, I almost fell of my chair, funny.
Thankfully, Nico’s OT and BT understand that, our lives would be made easier by facilitating his ability to use the toilet, eat solid food and his dress himself. The rest can wait.
He will be in a totally special needs class this year, with other low functioning Autistic children.The teachers have a stellar reputation, which is encouraging.
We live in area that does have great Doctors/Therapists, mainly from The Duke Medical Center. Although, as parents, we have demanded that they use their skills in a wise and practical manner. Thus far, the have willingly obliged. I know we are lucky.
Best,
Rohan
Yes, facilitated communication does sound kind of spooky. It is probably useful for say… highly functional brains in a body compromised with muscular dysfunction, AND CAN SPELL. I give the staff credit for trying, but it is seemed exactly as you characterize it: an astrological technique.
So glad that you are in an area that has resources, Rohan. Sounds like they are responsive to your needs. Professionals take much more interest when they get push-back from advocates. At least, that’s what I’ve found.
Warm regards,
Jack
Your reaction to this is interesting – I work in disability research and can tell you that facilitated communication has no clear evidence base that it is effective and that it has been discredited by many professional organisations. It has also been implicated in several high profile cases where “abuse” is disclosed through the use of FC, but has later found to be a fabrication of the facilitator. However, the belief that it works is still strong within some circles. Proponents of the technique typically argue that it will only work if you “believe” that it will work – that idea on its own is enough to raise suspicions for me!
In other matters, I really admire this blog of yours and your honest attempts to understand your brother and your relationship with him. I have a younger sister with an intellectual disability – she is a beautiful and very complex soul and our relationship is the same. You express so much of what I feel – thanks for putting it out there.
Hi Chezmaree,
I think we agree. At least several professional organizations have come out with policy statements against the use of FC, stating that it is not supported by scientific evidence. As I mentioned, my personal experience FC as implemented by the counselors, obviously unfamiliar with the technique, was that it was a lot of hooey.
But, in your professional opinion, could FC be helpful with the appropriate candidate, with control on facilitator bias? For instance, do you think that people with cerebral palsy, with muscle control issues only, would be able to benefit? This was originally for whom the technique was intended in Australia. Then Douglas Biklen applied it to autistics.
I also stop listening once someone brings ‘just have faith’ into the equation. I can’t tell you how many lottery jackpots I have missed because I just didn’t believe I was going to win.
Thank you so much for reading. I appreciate your kind words.
best regards,
Jack