Autism and Community:
Towards a vision of better supports
for persons with autism and their families
in the Waterloo-Wellington region
Elizabeth Bloomfield commented in reply:
Wondering about the Autism and Community workshop??
What exactly is this "Farm Community and Centre" about?
This project is about the creation of an "intentional community." In addition to an agricultural "farm" component, the vision encompasses the development of a "centre of autism identity, awareness, expertise and services" that would support all persons and families with ASD who want and need it. It could provide a base for day and summer programs, which could include being a place for delivery of therapies and health services. Your ideas are invited. What would you hope to see?
To help develop a complete vision that will reflect the needs and hopes of people with autism and their families in this region, the Autism and Community Workshop is planned for Monday, November 1. For details about workshop see: http://www.ont-autism.uoguelph.ca/GSA-Nov1-workshop-flyer.pdf
Our email discussion group has been set up for people to access further information regarding this "Intentional Community." Just email Elizabeth Bloomfield <mailto:firstname.lastname@example.org> or Nancy Miles <mailto:email@example.com> to access the site. Or you can go directly to
http://groups.yahoo.com/group/ASDFarmCommunityandCentre/ and click on the "Join Group" button.
Here is a sample of the latest very interesting correspondence in the discussion group. This letter responded to an article that was sent to the ASD Farm Community and Centre site drawing our attention to the article in The ASA ADVOCATE, July/Aug 1994, by and about Dr Eric Schopler, founder of TEACCH. Click for the original article: http://www.teacch.com/edkidses.htm
Early in the interview, Schopler says: "I've learned that the parent's perspective is the single most important concept that has and continues to shape and inform our treatment program and our research." The person submitting this to the discussion group remarked that now that ASD includes persons who can speak about their symptoms and priorities, we might say adults themselves should be consulted.
founded the TEACCH program for young children in North Carolina, with
strategies that have been found to be very effective. From the late
1980s, TEACCH also began to plan and develop a farm residence project
called the Carolina Living and Learning Centre (CLLC), for some young
adults. I heard a presentation by its director at the Kerry's Place AGM
in late 1990.
Click for some recent photos and text
about TEACCH's CLLC. http://www.teacch.com/cllcpitt.htm
"I notice the interview article was published in 1994 and would reflect an even earlier date for Schopler's thoughts, say 1992. That would be before awareness of Asperger's Syndrome reached North America, with the recognition both of a broader spectrum of autism and that persons with autism have thoughts and priorities that must be respected. At that time, it was quite usual for parents to speak for their adult children. Perhaps Schopler was then a bit unusual and progressive in speaking up for parents' rights, in contrast to leaving all priorities to the professionals. The Bittersweet video also shows parents speaking for their adult children. And that was assumed in the Autism Society Ontario's report OUR MOST VULNERABLE CITIZENS (1991).
"But more than 10 years later, we have moved on. Our group should certainly have a central focus on "listening" to persons with autism, especially when they do not speak with their voices and cannot easily make themselves heard. That's one reason for GSA/ASPIRE's emphasis on helping persons and families to do PATH (Planning Alternative Tomorrows with Hope).
"There are other ways in which assumptions and priorities change. One is the physical shape of the buildings in intentional communities. Another is the concept of staff. There is such a delay between an original idea and its implementation that by the time a building is erected the ideas behind it may be outdated. For example, we should be careful not just to erect a group home with more space around it, because it is in the rural area. How do we build real community (of respect and understanding) while recognizing that persons with autism are so different from one another that they may not be able to stand living together in a group residence?
"Please, everyone, let's engage in some warm-up discussion before the meeting on November 1. What do we really want?"
A Process for Developing a Vision
for a Farm Community and
Regional Centre for Autism Spectrum Disorder
by Bruce Kappel
Quite a few families involved with Guelph
Services for the Autistic and Waterloo Wellington Autism Services are
in the idea of an intentional farm community involving people with
supporters. The idea includes a regional centre of ASD expertise. Among
interested families, there have been presentations and discussions.
families have visited other intentional communities and collected
about others. Some have written about their hopes and expectations of
intentional community and a regional centre.
The discussions so far have included many
different options in terms of what might be included, whose needs might
addressed, urban/rural involvements, how different aspects are
developed and at
what pace, and so on.
The Boards of GSA and WWAS think it is time
to consolidate our various thoughts and come to some agreements about
shared vision and how we should focus our work in the future.
Session(1 November 2004
To accomplish that focussing, we are
two steps. The first is an evening workshop to reach some general
about the features we want to see in a farm community, and, identify
are willing to work on developing the concept. The second step, if
will be a day long working session to develop statements of vision and
agree on the steps we need to take over the short and long term, and
personal commitments to accomplish the work.
The primary focus of the
evening event is
to identify what families want a farm community to be for them. Some
interest in having a family member live in the community. Others see it
opportunity for work. Others are looking for respite. Others are
interested in the idea of a centre of expertise. Some want a farm that
working farm, not just housing in a rural area. Some want to make sure
advantages of urban life are not lost. There are many possible
There are also a variety of ways that such components might be
of those ways could involve a farm community. Others might not.
session will be a chance for
people to talk about what they think a farm community might mean for
we have identified what people are hoping for, we can make an initial
about whether a farm community actually makes sense. If we work to
something, it would be nice to know someone would actually come. If it
make sense to proceed, we will then do more work at the day long
- Think about
what you want a
farm community and/or regional centre of ASD expertise to mean to you
of the information
produced so far, such as the rest of this document. Check the
OAARSN site, using the Search function on the main page to look for
look at the
messages, files and folders of our Yahoo group at http://groups.yahoo.com/group/ASDFarmCommunityandCentre/
The Day Long Session (Sat Nov 27 or
The day long event will
those who are clearly interested in working toward a farm community. We
develop vision and mission statements, be very clear about the
will inform future developments, consider and decide on the components
want to include in the community, and develop practical action plans
future. These discussions will include principles and practicalities
funding, leadership, which big or small steps to take first, and so on.
COMMUNITY AS A FOCUS FOR
AND FAMILIES WITH AUTISM?
by Elizabeth Bloomfield
idea is being discussed
among people in Waterloo-Wellington who are concerned about good lives
their sons, daughters and friends who have autism spectrum disorders
(ASD). A farm
community could also offer supports and resources to all persons and
with autism who do not actually live there.
A farm community might combine all these roles:
- a home and way of life for
adults with autism
- a place of work for
visiting adults and co-op school students
- a base for summer, weekend
and day programs, and a place for weekend respite for children and
- a node of expertise and
understanding of ASD and helpful support strategies
- a symbol and focus for
families, friends, and benefactors, now isolated and dispersed
- a model community that is
ecologically and environmentally responsible and also well integrated
with the larger surrounding community.
These are ideas about how a farm community could help people
- People with
hypersensitivities to noise, heat and crowds can feel calmer and better
able to cope when their environment is more spacious and quiet.
- A small-scale farm
community is easier to understand and cope with than the pressures and
confusion of a complex urban or metropolitan society.
- People have a good sense
of purpose and interdependency as they work together on meaningful and
necessary tasks every day and through the seasons of the year
- A farm gives opportunities
to develop special skills and interests in all the varied tasks of
caring for the land, crops, trees, animals and poultry and in craft
- Members of the community
and their families and friends can have a more sense of stability and
security, to balance their anxieties about the future
information, research possibilities and sharing of findings about
“what’s different” and “what helps”.
Ideas for an ASD Farm Community
and Centre in our region are being discussed. A Yahoo Discussion
Group has been set up. If you’d like to join in, visit http://groups.yahoo.com/group/ASDFarmCommunityandCentre/
and request an invitation to join.
This is a preliminary
statement of our vision for a farm community. The next opportunity to
discuss the ideas in person will be on 1 November 2004, in the evening
at Ignatius/Orchard Park north of Guelph.
- Respect for the
individuality, self-expression and quality of life of each person with
- Ensuring that families
continue to have voices and leadership roles, with self-advocates also
represented, as well as supporters from the larger community. We have
to guard against domination by paid staff or managers, or by any
particular group in the ASD cause.
- Consensual decision-making
in the planning stages--if there's disagreement on some big issue, we
shouldn't act until we've worked through the problem. Perhaps use a
PATH planning strategy (see below).
- Inclusion and
inclusiveness--both for the range of persons with ASD, and for the ASD
community in relation to the larger society.
- A sense of shared
purpose and hope among all members—persons with autism, family
members, friends and professionals—so that all are represented in its
leadership, management and sustained development.
- A centre of excellence
and expertise that provides for the needs of persons with ASD and
their families, filling in the many gaps in present-day services, and
going further–building on strengths, enhancing quality of life,
optimizing each person's abilities, and supporting lifelong learning to
reach full potentials.
- Consultations and
therapy of various kinds, to suit complex individual needs, are
provided to people living onsite and offsite so families do not have to
- Various residential
options including, for example: a) semi-independently in small
individual homes but with support available when needed; b) by choice
in small groups in larger homes with a family-like atmosphere and more
support. There might also be on-site accommodations for
parents/relatives/friends who are visiting their family member.
- Many opportunities for
work, paid and voluntary, in caring for crops, livestock and trees,
and in related rural businesses or services for other members of the
- A base for co-op day
programs, respite and summer camps.
- A central store of
resources for ASD individuals/parents and community (videos,
therapy equipment, computers and software, laminators, printers).
- Strong connections with the larger society outside the farm/centre to increase
understanding of and interact with persons who have ASD.
- A base for involvement
by persons and families in research projects concerned with
ASD--its causes, treatments, best caring practices, effective learning
- Opportunities for University
and College students to learn about ASD and train to become more
effective teachers, support workers and other practitioners.
QUALITY OF LIFE
As well as
core values and functions, the resources of a landed property and the
skills and enthusiasm of community members can allow for all sorts of
"quality of life" features. Interesting and fulfilling activities are
worthwhile in themselves for community members. They are also ways for
from the larger society to visit and be involved in the ASD community,
increasing awareness and understanding and making further connections.
are just some features that would be compatible with a rural/farm
quite close to urban centres:
- Sound ecological and
environmental responsibility--in building styles, energy conservation,
organic farming methods, water and waste management. (It could be
possible to get special funds for these).
- Health and fitness--hiking
and riding trails etc for year-round exercise outdoors; some indoor
facilities as well—including relaxation rooms.
- Sharing resources about
various interventions and therapies. For example, with dietary
intervention: community could host an organic buying club, have a diet
kitchen for community members but also for sale to offsite member
families, and co-ordinate purchase of supplements
- Intensive horticulture,
including greenhouses; production of eggs and honey
- Sheltering rare plant and
animal species, in keeping with our deep-rooted love and care for our
special human beings. There could be breeding and sale of seeds, young
- Open days and a small
petting farm for kids
- Fostering and training
young dogs that are going to be companions for children/adults with ASD
- Therapeutic horseback
- Craft skills of all kinds,
with outlets for artistic talents and products that could be sold.
Weaving has been found good for calming sensory and nervous systems,
and pottery too....
- Among various ways of
interacting with larger community: a roadside shop and even tearoom; a
couple of community celebration days each year (spring and fall?)
- A retreat shelter for
carers who need a break....
WHAT WE NEED
- Continued deep thinking,
sharing ideas and listening to one another about elements of the vision
- Generous funding,
intelligent and enthusiastic advocacy and superb community relations
- Good insurance and
impeccable policies for protecting vulnerable people against abuse
- Leadership is critical: it
must be constantly renewed and refreshed.
- Carefully planned and
co-ordinated systems of governance and administration that are
consistent with the core values.
- Ideas for how we might
start—a pilot project that is effective by itself, but also part of a
longer-term, consistent, holistic and integrated vision?
Look up the Network of International
Communities for Autism (NIFCA) at
article (including discussion of Bittersweet Farms) by Prof. Margaret
of Wilfrid Laurier University: “In Response to
Deinstitutionalization: Farm Communities as a Housing Alternative for
Individuals with Autism” Journal of Leisurability, 27, 1
(Winter 2000). http://www.lin.ca/resource/html/Vol27/V27N1A2.htm