Developing Autism Awareness from the 1970s:
Initiatives in Guelph-Wellington, Ontario

Elizabeth Bloomfield recalls her first official duty for the autism cause in Guelph-Wellington County, in January 1975, being photographed at the offices of the Guelph Mercury newspaper while receiving a donation of $200 from the OverTones of Harmony Incorporated, the local women’s barbershop singing organization. Harmony Inc. and its local choruses all over North America had been persuaded by a leading member in the Chicago area to adopt autism as their special charity. The OverTones have continued good friends of families who live with autism in Guelph and Wellington County.

The little ceremony for The Mercury was significant in several ways. It was perhaps the first mention of autism in the local news media. Autism had been defined more than 20 years earlier by Leo Kanner, as a distinct, pervasive disorder with lifelong and severely disabling effects for most sufferers. The general public knew nothing of autism. Parents of children diagnosed in the 1960s and 1970s, when they had to tell neighbours and relations that a son or daughter was autistic, might receive the reply “Oh, that’s nice!” The unfamiliar word sounded like “artistic.” In those days, the accepted prevalence of classic autism was 4.5 children in 10,000. Now, the prevalence of autism spectrum disorders may be 100 in every 10,000 or higher. Just about everyone has heard of autism now. 

An unsolicited donation was especially welcome in those early years when autism was so little known. It was a foretaste of the huge efforts in fund-raising and grant applications in which the Wellington Chapter would become involved, in an era before mandatory special education and when families could not receive any financial help with the high costs of living with autism.

The OverTones’ first gift was made nearly two years before there was a separate Wellington County Chapter. Gerry and Elizabeth Bloomfield of Guelph had attended the inaugural meeting of The Ontario Society for Autistic Children in mid-1973, a year or so after their son Andrew was diagnosed with classic autism. Gerry became a member of the founding Board of Directors, at first representing interested families outside Toronto and Ottawa. He continued to be much involved with OSAC, as director, vice-president, president and past president, through its period of establishment and growth until 1990.

In the first federal structure of OSAC, Wellington County and the new Region of Waterloo were combined in one chapter that began to meet in 1974, with Wellington represented by Elizabeth Bloomfield. Stan Shalay of Kitchener, parent and school principal, was the founding president. Special autistic classes were started by the Waterloo and Wellington boards of education, and chapter representatives served on the forerunner of each Special Education Advisory Committee. Combined Waterloo-Wellington summer camps were held in 1975 and 1976, planned and led by Joanne Seip who taught the class in Kitchener. The Waterloo families, led by the Shalays, continued to organize summer camps for many years and were splendidly successful with fund-raising.

In September 1976, the OSAC directors decided that chapter areas should coincide with Board of Education territories. So Waterloo and Wellington were split into separate chapters. However, families in the two areas have continued to co-operate on adult issues, especially since the mid-1980s. 

The founding meeting of the Wellington County Chapter of OSAC was in the Library of the Edward Johnson School in October 1976. This school had risen magnificently to the opportunity to host Wellington County’s first class for autistic children 20 months earlier. Its principal, Norm Burlock, gave a great lead to staff and students in welcoming the new students and their families. The first teacher, Miss P.A. Luxton, continued in this role for more than 12 years, as the class moved on to John McCrae School. A close bond continued between the Chapter and the class. Out of its fund-raising efforts, the Chapter paid for Miss Luxton to attend several conferences of the Autism Society of America, one of the few forms of professional development in those years. In these years before special education was mandatory, the Chapter also bought special equipment and supplies for the classroom. 

Gerry Bloomfield represented autism on the Board of Education’s special education advisory committee from its origins in the early 1970s; he continued to serve on the more formal SEAC from 1982, being later succeeded by Scott Lawson. We provided support to families in IPRC and other meetings when issues of appropriate placement arose. 

Members of the Ensing, Engler and Bloomfield families shared most of the tasks in keeping the Chapter alive during its first ten years. The monthly Chapter Executive meetings, often in the Bloomfield living room, were also support groups at which new families were welcomed. Being run by parents can ensure that a chapter really responds to individual and family needs. Until the later 1980s we were on our own, with almost no chapter support from the provincial organization. We were fortunate in being helped by some friends who did not have autistic children of their own, notably two accountants. Russ Lott audited the Chapter’s books for many years. Gus Buss was treasurer at an important time, and steered us through the incorporation of Guelph Services for the Autistic. We shared our experience in running a good chapter in compiling for OSAC/ASO the first Chapter Handbook in the mid-1980s. 

The Chapter’s largest efforts went into organizing and financing the summer day camps, a group activity that was often continued in a weekly recreation group throughout the year. In the years before Special-Services-at-Home funds for individual children, these group activities were helpful for families. The first day camp organized by the Wellington Chapter, in 1977, served five children with autism and seven with learning disabilities. The Wellington County Board of Education kindly gave free use of Priory Park School facilities and provided a bus for transportation. 

Experience with this first Guelph summer day camp for children with autism led Elizabeth Bloomfield to be involved in organizing Guelph’s first integrated summer day camp in 1978, as treasurer and a director of the responsible charitable corporation, Rainbow Programmes for Children. Originally the brainchild of Paul and Wendy Young, Rainbow continued to offer integrated summer day camps for children up to about age 12, about one of three having special needs. From the beginning, however, it was necessary to negotiate special funding so each child with autism could have his/her own counsellor. As in many other group settings, it was often hard for counsellors and other children to understand the particular needs of autistic youngsters who could be frustrated by the pressures to conform to group norms and activities they might not understand.

Camp counsellors and volunteers were recruited mainly from among students and graduates of the University of Guelph and also from local high schools and colleges. So were the Special-Services-at-Home contract workers we hired when the Chapter administered contracts for several children and their families. Some served as volunteers in the Autistic Class. Scores of such young people supported the Chapter’s efforts. Memorable volunteers in the 1970s were Beverley Peterson, Brian Christie and Gwen Lush. Claire Zeijdel began as a student volunteer in 1982, continued through the 1980s, and served as Chapter president from 1989 to 1992. 

We worked hard to raise public awareness and understanding of autism as well as the funds to support our services for the children. We organized public information meetings in the Guelph Public Library’s meeting rooms, the Delhi Street Recreation Centre, the University, and various school libraries. Our “bazaars” at the Willow West and Stone Road malls and the yard and garage sales at the homes of various supporters always attracted interest in autism and made useful contacts. We also raised quite a lot of money from our baked and preserved goods and our crafts--notably making more than $2,000 in two days at the Stone Road Mall in 1978. Two faithful friends of the Chapter who worked hard for many fund-raising efforts were Ankie Verhart and Gertrud Vreugdenhil.  
 
Guelph and Wellington County lacked any professional resources for children with disabilities and special needs, such as those in cities like Toronto, Hamilton, London and Windsor. So we were glad that several professionals at the University of Guelph took an interest in the Chapter’s efforts and our families.  Victor Lotter, the psychologist whose path-breaking research in the 1960s established the prevalence of classic autism at 4.5 children in every 10,000 in the population, was always a wise mentor. Griffith Morgan headed the University Centre for Learning Disabilities that undertook a major research project about childhood autism in the mid-1970s. Some of our children took part in research projects directed by Andor Tari of Family Studies, and the Wellington Chapter published and distributed his Annotated Bibliography of Autism 1943-1983 in 1985. From the later 1980s, Susan Bryson of Psychology was a strong ally in our advocacy for adult autism services.

Families caring for young children with autism live at full stretch, especially if they are also running support groups and local programs with and for other families. But somehow we in the Wellington Chapter from the later 1970s were also able to think ahead to adolescence and adulthood, aware that our region was a “black hole” for those age groups. We designed a model centre of autism expertise and respite that impressed Ministry officials and others, though in the end they did not actually fund it. To have the legal and financial powers to operate such a service, we formed the not-for-profit charitable corporation Guelph Services for the Autistic (GSA) in 1980, as a partner for the unincorporated local chapter. We also raised funds for the centre. 

In 1986, GSA and the Wellington Chapter sponsored a 9-month project with the neat acronym GASROD: Guelph Autism Services--Research, Outreach Development. A federal grant allowed us to employ a team of young women and run an office.  The Bloomfields led a team of four young women to study and meet current needs of families who lived with autism (Elaine Williams), plan better local and general services (Barb Soloman), raise general public awareness of autism (Mary Westley), and recruit volunteers (Karen Turkington).
 
GASROD did raise autism awareness in events such as a midsummer rally in
Guelph’s St George’s Square, attended by our elected representatives at three levels of government. MPP Rick Ferraro set up a Queen’s Park meeting for us with John Sweeney, Minister of Community and Social Services, at which we were able to convince the Minister of the dearth of funded services in Guelph-Wellington County. One lasting result was the funding of a case-manager for children with autism and their families, a service that is now administered by Family Counselling and Support Services. 

The GASROD office continued a year or two beyond the formal life of the project to provide Chapter and family support. Autism activists elsewhere were interested in the project’s achievements and reports. The provincial organization, then the Ontario Society for Autistic Citizens, also learned from the GASROD experience in planning and implementing its first Trillium grant. GASROD’s Elaine Williams became one of the OSAC regional development officers and later acted as executive director of Autism Society Ontario

GASROD and GSA’s efforts to draw attention to the unmet needs of adults with autism had some longer-term results. Several meetings in the later 1980s prompted OSAC/ASO to ask us to host an Adult Task Force in Guelph in 1990-91. A provincial needs survey gathered data for 802 adults, which were processed and analysed by Victoria and Elizabeth Bloomfield. The Task Force report, Our Most Vulnerable Citizens, that we edited and printed in Guelph for ASO in 1991, also included two fine essays by Susan Bryson on “Needs of and Service Models for People with Autism” with recommendations for action. (See OAARSN's Document Centre).

Since 1991, the Waterloo and Wellington chapters of Autism Society Ontario have been able to concentrate on the needs of pre-school and school-aged children. The Wellington chapter has reached out to families who live in the centre and north of Wellington County. A new chapter for young families who live with autism has been organized in the City, in the southern portion of the region of Waterloo.

Concern for adults with autism led to the formation of a new incorporated charity in our region, Waterloo-
Wellington Autism Services. WWAS and GSA continue to collaborate in some creative initiatives.

Members of the Waterloo Chapter had incorporated Woodgate Residence for Autistic Adults in the early 1980s, to have legal powers comparable to GSA’s in Guelph-Wellington. Woodgate members devoted their energies to a detailed proposal for a farm community for autistic adults and to the associated fund-raising. Various co-operative efforts by GSA and Woodgate to get Ministry support for proposed adult autism services in our region met the response that only joint autism services for adults in Waterloo-Wellington would be funded, if the two groups got together in one charitable organization. So we did that too, first through a GSA Action Group from the late 1980s and then incorporating Waterloo-Wellington Autism Services in 1991 by renaming Woodgate and revising its bylaws.

Grants to WWAS from the Ministry of Community and Social Services between 1991 and 1995 supported a small office with paid staff who surveyed the needs of adults with autism/pdd, started a library and information service, studied model programs anywhere for their possible relevance to Ontario, and represented autism on regional councils and committees concerned with developmentally handicapped people. WWAS had some early success in being approved for housing grants that might have enabled it to start a residential program for nine adults if matching grants had been forthcoming from MCSS. 

In 1993, WWAS began a pilot project called Supported Employment Enhancement Program (SEEP), in which two vocational instructors tried to develop work skills and find paid or volunteer work for 14 young adults with autism in Waterloo and Wellington. WWAS received donations from organizations and individuals for SEEP, including $12,000 from the Wellington Chapter out of the funds raised with GSA in the 1980s. SEEP ended in late 1995, mainly because of uncertain fiscal funding from the Ministry. Since early 1996, WWAS has offered bursaries of up to $2,500 each to individual adults with autism for specific plans to make a difference in their quality of life.

Guelph Services for the Autistic had retained its incorporated status and redefined its focus in 1997 to become a housing trust supporting adults with autism to have homes of their own and more fulfilling and productive lives. GSA's new focus is associated with person-centred planning, individualized funding that makes the best possible use of natural and community resources, and personal support networks.

GSA and WWAS, now both run by volunteers, co-operated in the joint newsletter Adult Autism Issues in Waterloo-Wellington to 2006 (see Document Centre) and in supporting the creation of the Ontario Adult Autism Research and Support Network website at www.ont-autism.uoguelph.ca. WWAS contributed financially to GSA’s new ASPIRE project--Autism Support Project: Information, Resources, Empowerment--that modeled creative ways for families to achieve better lives and more secure futures for their adult daughters and sons with autism.  WWAS also made a substantial grant to enable a special Autism Collection to be established for our whole region at the Kitchener Public Library (see Books on the Autism Spectrum).

This retrospective view of the autism cause in Guelph-Wellington is based on the remembered experience of Elizabeth Bloomfield, who was involved with the Wellington Chapter from its origins until 1987 and since then, as founding director and volunteer with both GSA and WWAS, with various adult issues and initiatives. Records relating to Autism organizations and initiatives, in the region and Ontario generally, are held in a special Autism Collection at the Wellington County Museum and Archives. See: http://www.wcmaonline.on.ca/~collection/search/archives_web/srchitem.html Search Title=Autism