I would like to thank the following people for their advice and suggestions on the draft of this paper: My colleague Leigh Baruch; Jane Remington-Gurney, advisor to the Facilitated Communication Research Project in Brisbane; and Dr. Anne Bray of the Donald Beasley Institute.
This paper seeks to explore the issues that facilitated communication raises for persons who wish to introduce this, or have it introduced, to their sons or daughters. These children or adults may be non-verbal, have some expressive language skills, be very articulate but echolalic, or have other physical or language disorders which are found amongst people with cerebral palsy, Down syndrome, etc. They may be in alternative care situations rather than living at home.
The writer had informal discussions with individual parents regarding the impact facilitated communication had on their family lives and any suggestions they had to offer. Permission for the use of anecdotes was gained from parents and facilitated communication users. Names have been changed for confidentiality.
This paper covers the following areas: issues related to attitudes; the importance of validation; observations and suggestions on facilitation training for family members and caregivers; and obtaining support for parents and their sons and daughters.
Every parent will clearly recall the words spoken when a diagnosis was given regarding their son or daughter. "I am able to tell you now that our tests have shown that ____ is severely retarded. It is unlikely that he will ever be able to ____ or ____. We don't know what the future outcome for him is but it is unlikely he will develop at the same rate as his peers, etc., etc.,"
Some parents will seek second and third diagnoses, spend large amounts of money traveling overseas to clarify the condition and seek alternative treatments. Some will expend enormous amounts of time following training programs and learning about behavior modification and various drug regimes and in the process gather an extensive vocabulary of educational, psychological and medical terminology. They may become more expert than the "experts." They may experience enormous strains on their marriages, their sanity and their careers, particularly in the early years.
Eventually, they may come to terms with the restrictions, life-style and seeming inevitability of their child's disability. They may keep abreast with the current research; they may become resigned to the status quo and choose to enter a "survival-of- the-fittest" mode, whereby they invest their energies into what will bring the most return -- the rest of the family, their careers, their homes, their families, or themselves. From time to time they may come across some new treatment that sparks their interest and may struggle with decisions as to whether to pursue yet another treatment that may be as inconclusive as ones already tried.
Then they see a documentary on television and watch in awe as children just like their child appear to communicate as never before. Not only do they appear to communicate, but they appear also to be more intelligent than ever any tests revealed, or than they gave any observable evidence of. It looks too good to be true, but is it?
So begin the questions that parents ask themselves as they contemplate what could be the most traumatic readjustment to their lives and the life of their child since that first diagnosis. Some of the questions (Ashe, 1992) they may ask are: Are those children really autistic or intellectually disabled? Who is really doing the typing? How do those children know how to read and write? Why haven't I heard of this before? Does this mean they have been really listening to and understanding everything, but couldn't say anything about it until now? What will they say now they can say it? Concerning major quality-of- life decisions, if I open the door and there is something behind it, how will I cope? If I don't open the door, how can I live with the guilt of never knowing and never trying? Who will believe me? Who will believe my child? What if my child communicates demands for his future or present circumstances that I cannot fulfil? What if the child I "know" is not the real person at all? Do I have to start from scratch? Do all my knowledge and expectations that I have come to terms with have to be radically changed? Do I have the energy to start? Do I have the courage?
The expectations that parents and teachers alike hold regarding the abilities of these successful users of facilitated communication have to be radically revised within a very short space of time. As research results are published, further examination of professional expectations and methodologies regarding diagnostic criteria may need re-evaluation. At this stage, however, it is principally the parents who will be examining their attitudes. According to the parents interviewed, the process of changing attitudes is both shocking and exhilarating.
Mark's father remarked: "When I watch you facilitate Mark and hear how you speak to him, it's made me realize that I have to change the way I speak to him too. He is clearly not stupid and I have been using inappropriate words and tones when I speak to him." The father also noted that he would not be buying any more babyish books for his son to read, but would buy more age- appropriate reading material.
Where there are no trained facilitators in the formal educational setting of a user, parents will need to advocate for their sons or daughters. Parents have expressed that they experience some difficulty in weighing up whether they are able, given their own work commitments, to be their child's facilitator, to pay for someone to learn, or to canvas for already trained facilitators. Some schools overseas (Biklen, 1992) have adapted to cater to the needs of facilitated communication users by way of setwork-type activities, training peer facilitators, and acknowledging the level of support required by users whose disabilities may encompass behavioral, neuromotor, and emotional, as well as expressive language dysfunctions. There are isolated pockets of expertise in New Zealand where teachers are adapting to the educational needs of facilitated communication users, but things are still very much in their infancy.
If communication of an emotional or controversial nature comes from the user, the non-family facilitator should not take on the role of sole personal counselor. If required, the person should be referred to a parent, support agency or other person and facilitated through the counseling. Facilitated communication can be emotionally draining on non-family facilitators, and the line between professional and personal support must be clear. Remaining objective and empathic is of greater value to all concerned and lessens the risk of a user becoming emotionally dependent on a facilitator other than a family member. Parents have expressed that they felt threatened that someone who hardly knew their child was receiving communications, sometimes of a personal and emotional nature, when they had been struggling for years with no meaningful response. Non-family facilitators need to be sensitive to the special relationship between facilitated communication users and parents, and communications of this nature need to be validated by experienced facilitators.