Autism and Community:
Towards a vision of better supports
for persons with autism and their families
in the Waterloo-Wellington region


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:ebloomfi@uoguelph.ca> or Nancy Miles <mailto:nwvwm@yahoo.ca> 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.
Elizabeth Bloomfield commented in reply:

"Eric Schopler 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 and Strategic Plan
for a Farm Community and
Regional Centre for Autism Spectrum Disorder expertise

by Bruce Kappel

Quite a few families involved with Guelph Services for the Autistic and Waterloo Wellington Autism Services are interested in the idea of an intentional farm community involving people with autism and supporters. The idea includes a regional centre of ASD expertise. Among the interested families, there have been presentations and discussions. Some families have visited other intentional communities and collected information about others. Some have written about their hopes and expectations of such an 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 be 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 our shared vision and how we should focus our work in the future.

 To accomplish that focussing, we are taking two steps. The first is an evening workshop to reach some general consensus about the features we want to see in a farm community, and, identify those who are willing to work on developing the concept. The second step, if warranted, will be a day long working session to develop statements of vision and mission, agree on the steps we need to take over the short and long term, and make personal commitments to accomplish the work.

The Evening Session(1 November 2004)

The primary focus of the evening event is to identify what families want a farm community to be for them. Some have an interest in having a family member live in the community. Others see it as an opportunity for work. Others are looking for respite. Others are primarily interested in the idea of a centre of expertise. Some want a farm that is a working farm, not just housing in a rural area. Some want to make sure the advantages of urban life are not lost. There are many possible components. There are also a variety of ways that such components might be “packaged”. Some of those ways could involve a farm community. Others might not.

The evening session will be a chance for people to talk about what they think a farm community might mean for them. Once we have identified what people are hoping for, we can make an initial decision about whether a farm community actually makes sense. If we work to build something, it would be nice to know someone would actually come. If it does make sense to proceed, we will then do more work at the day long working session.

Preparation for the Evening Session
  1. Think about what you want a farm community and/or regional centre of ASD expertise to mean to you and your family.
  2. Review some 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 "farm community".
  3. And 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 Sun Nov 28)
The day long event will bring together those who are clearly interested in working toward a farm community. We will develop vision and mission statements, be very clear about the principles that will inform future developments, consider and decide on the components that we want to include in the community, and develop practical action plans for the future. These discussions will include principles and practicalities related to funding, leadership, which big or small steps to take first, and so on.

_____________________________________________________________________

A FARM COMMUNITY AS A FOCUS FOR

PERSONS AND FAMILIES WITH AUTISM?

by Elizabeth Bloomfield

A hopeful idea is being discussed among people in Waterloo-Wellington who are concerned about good lives for their sons, daughters and friends who have autism spectrum disorders (ASD). A farm community could also offer supports and resources to all persons and families 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 youth
  • 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 with autism:

  • 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 workshops
  • 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
  • Observation-based 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.

 
CORE VALUES

  • Respect for the individuality, self-expression and quality of life of each person with ASD
  • 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.

ESSENTIAL QUALITIES AND FUNCTIONS

  • 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 run around.
  • 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 ASD community.
  • 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 strategies.
  • 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 FEATURES

        As well as the core values and functions, the resources of a landed property and the collective 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 friends from the larger society to visit and be involved in the ASD community, thus increasing awareness and understanding and making further connections.

      The following are just some features that would be compatible with a rural/farm community 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 stock etc.
  • 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 riding
  • 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....

 
OTHER THOUGHTS ON 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?

 
MORE INFORMATION

Look up the Network of International Farm Communities for Autism (NIFCA) at
http://www.autismnetwork.net/history.html

Read an interesting article (including discussion of Bittersweet Farms) by Prof. Margaret Schneider 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