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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
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