Four years ago at the time of the 4th Autism-Europe
Congress, Norman Giddan and I undertook the study of the farmstead
model for adults with autism. With Bittersweet Farms of the United
States as our frame of reference, we wondered if this model existed
in other countries, and if so where it was thriving, characteristics
that contributed to successful outcomes and problems such communities
might face.
We knew that in the United States, as elsewhere,
earlier diagnosis and better treatment of children with autism
were contributing to a larger identified population, whose needs
were better understood and defined as they reached adolescence
and adulthood.
There were an estimated 350,000 individuals in the
United States with autism and three times that number if those
with autistic-like symptoms were included.
Then, we saw that many large institutions that once
inadequately housed this population had been emptied in the U.
S. and in many parts of Europe, but alternative living arrangements
had only just begun to be created.
All of us today, continue to be concerned about where
these grown children will live and work in their adult years.
We know their lifetime needs are tremendous.
They need a place to live where there is structure,
consistency and safety.
They need caregivers who can take deficits into account,
but still challenge these adults with opportunities for new learning
in all areas.
They need work opportunities that fit their strengths,
and allow for successful accomplishments.
They need organized leisure time.
The issue of where and how adults with autism should
live has become politicized throughout the United States and Europe.
Those advocating for the rights of people with severe handicaps
believe the city is best - the urban setting with neighborhoods,
public transportation and city jobs.
They have what I call an Urban Bias, (Now I come
from New York City, so I know just what an urban bias feels like)
a narrow and parochial view, that usually rests on ignorance of
what goes on beyond city limits.
Many who work with autism disagree with the rigid
urban view, acknowledging a need for a full range of options.
They see many aspects of city life that are actually troublesome
and confusing to adults with autism. Other citizens as well,
throughout the U. S. are moving in droves away from cities and
toward more tranquil settings.
To the benefit and pleasure of many, the rural farmstead
model which has taken root in Europe and the U. S. powerfully
illustrates another kind of life; a more peaceful, less stressful
environment that offers safety from urban traffic and city crime.
Such a natural setting offers a life rich in activity and interactions.
As Norman Giddan and I explored the farmstead model
four years ago we discovered that farmstead communities for adults
with autism have been evolving in Europe and the United States
since the early 1970's. Our European study conducted in 1992
identified one such site in each of seven countries (Giddan &
Giddan,1993.) These included Ny Allerodgärd in Alleröd,
Denmark, the only such project in all of Scandinavia; Dunfirth
Autistic Community, Ireland's exemplary program in Enfield, County
Kildare; La Pradelle a pioneering model program in Saumane, France;
Hof Meyerweide, the culmination of three stages of the Bremen
Project in Bremen,, Germany; Wolfheze, the first farmstead in
the Netherlands for adults with autism, created as an extension
of the Dr. Leo Kannerhuis project; La Garriga, the expanding program
near Barcelona, Spain and Somerset Court in Somerset, England,
the original farmstead for adults with autism founded in the early
1970's by Sybil Elgar. Somerset Court has served as inspiration
and model for several of the European programs and for the ground-breaking
American example at Bittersweet Farms in Whitehouse, Ohio which
opened in 1983.
Representatives from these programs all gathered
at a luncheon in the Hague during the last Autism - Europe Congress,
and what a surprise it was for me to discover that although these
centers had been developing in similar ways, for similar reasons,
for the most part they did not know each other!
Our book, European Farm Communities for Autism
published in early 1994, summarized the information we collected
through extensive survey forms, many personal interviews and some
site visits.
These are the characteristics that typified these
farmstead sites:
1. A rural setting where farming, horticulture and
domestic care form the basis of meaningful work and offer varied
activities that can be tailored to the needs and abilities of
each individual.
2. Residential, vocational and recreational experience
are integrated within the setting and guided by the natural cycles
of the day and the seasons.
3. Interdependence of residents and staff whose reciprocal
efforts side by side in daily farmstead activities counteract
the social isolation of the autistic condition.
4. Individualization of programming wherein each
person's needs and talents and preferences are considered in program
planning and communicated through written reports to all involved
with that individual.
5. Behavior modification principles and structured
teaching guide daily living, learning, and problem-solving and
aid in control of difficult behaviors.
6. On-going staff training with judicious use of
outside professional consultants.
7. Focus on communication with emphasis on visual
cues including picture sequences, sign language, and augmentative
communication systems.
8. Involvement with the larger community beyond the
site, for business ventures, athletic pursuits, recreational options
and travel.
9. Continued family support to varying degrees for
visits, holidays, celebrations, letters and telephone calls.
We found similarities and differences among the sites
examined. Similarities included rural settings, establishment
when large institutions began to close and observed need for more
distinctive and specialized services for this population. In
most cases, a "special" teacher and parents joined forces
to begin these programs, and they exerted political pressure to
garner government funding for their project. Within these settings
a wide range of ability existed among the residents.
Contrasting features were the size of the different
programs, the variable emphasis on staff training, the formal
individualization of programming and the depth and quality of
record keeping.
Critical issues faced by all centered on leadership
succession, funding sources, public relations, staff retention,
management of difficult behaviors and challenges to program expansion.
Now in 1996, as we continue to examine the growth
and evolution of these projects we see that the farmstead model
continues to be a viable option in the continuum of services available
for adolescents and adults with autism. Farm settings provide
work opportunities for all levels of skills, useful endeavors
with vivid outcomes, a pleasantly paced, peaceful environment,
and shared experiences with care staff on the farm and in neighboring
communities.
Many of those centers studied earlier are expanding,
building additional work sites, adding program elements and creating
satellite homes in or near neighboring communities. Expansion
of existing programs has been realized at Dunfirth, Somerset Court,
and Bittersweet Farms while such plans are underway at Dr Leo
Kannerhuis and La Pradelle.
Leadership succession is interesting to watch. Early
directors have been those skilled in special education and program
development, but as farmsteads grow, they require more management
and business acumen. Second generation leaders at Bittersweet
Farms and Somerset Court have backgrounds in social services administration,
while the third generation director at the Dr. Leo Kannerhuis
is actually a businessman.
Financial support continues to be a key issue. In
those countries where autism has advocates at governmental levels,
programs are sustained and expand. Where government priorities
lie elsewhere, and financial exigencies exist, budgets are cut
and autism programs suffer. National financial pressures have
taken their toll at Ny Allerodgärd in Allerod, Denmark.
Elsewhere, new farm communities for autism have opened.
In the United States we see impressive programs at the Carolina
Living and Learning Center near Chapel Hill, North Carolina and
at The Homestead outside Des Moines, Iowa.
Several are in formative stages, including Rockwood
Farm of Adrian, Michigan, Pheasant Ring of Rochester Hills, Michigan,
and The Adonis Family Farm of Southwest Florida. Rusty's Morningstar
Ranch in Cornville, Arizona has added one more rancher and is
raising funds for an additional building.
We've heard of farm settings in the U. S. that include
autism among a diverse group they serve, and we plan to explore
these sites in the future, just as we will watch programs proposed
in Belgium, Estonia and elsewhere.
There exists now an active informal network among
those interested in or somehow involved with the farmstead model.
Our phone and fax lines are busy with informal advice, networking
connections and referrals.
A young man from England, who had problems living
within the urban options there has been doing well in Dunfirth
farm community in Ireland.
Staff exchanges are planned between English and Irish
settings.
A couple from Belgium visited Bittersweet Farms last
month to gather ideas for a venture they want to launch with others
in their country.
Our books, European Farm Communities for Autism
and Autistic Adults at Bittersweet Farms are used by
many as guides to the establishment of farmsteads.
The newsletter from Bittersweet Farms is now distributed
internationally.
I propose the creation of a more formal Network to
aid and assist those who want to build and expand the farmstead
model for autism: the Network of International Farm Communities
for Autism - NIFCA. We have the ingenuity, the creativity, the
skills and information to make such a Network flourish.
This panel is but a small example of what such a network can offer in Europe and beyond. Let's think of a way to get on-line through e-mail or newsletters to exchange information that will enhance these ventures in countries that have begun farmsteads and to those that are just beginning to plan them.