'Model of Excellence' Community Models in autism
World Community Autism Program is a not-for-profit organisation
that has among its goals the development of programs to improve the lives
of people with autism. Having lived and worked in many educational and
institutional settings where autistic people are educated and cared for,
we have seen that current programs are insufficient in even the most developed
areas of the world, at a time when the incidence of autism is rising at
alarming rates. Present practices fail to address the consistent pattern
of family crisis and breakdown that inevitably leads to institutionalization
and an enormous burden on the community.
We have also seen that, with adequate and co-ordinated support, education
and services at a local level, including proper respite services, foster-care
programs, a range of therapeutic and vocational training programs, an autism-aware
medical community and properly funded and organised family support networks,
these crises can be averted, families can stay together, and integration
into the mainstream of community life becomes more likely.
In our latest book - 'Autism,
the Way Forward'
- and in literature posted on our website, we present models of excellence
programs that can be developed locally in conjunction with existing service
providers to provide comprehensive education, training and support to avert
crisis in the family and build a foundation for real inclusion.
Autism - The Way forward
Families faced with raising a child with autism or one of the autism spectrum
conditions such as Asperger’s Syndrome, Pervasive Development Disorder or
global delay, or who are raising children who have conditions such as Oppositional
Defiant Disorder, Attention Deficit Disorder and Attachment Disorder need
support and training. Already gangs, criminals, homeless children and displaced
persons live on the streets of all major cities and many small towns. This
is the price society pays for ignoring the demands of families in crisis.
We have written about some of the problems which arise in care homes, institutions
and schools when the care of special needs persons is provided by people
employed for this task who are not prepared, not well paid, not supported
by their employers, or when the system of care breaks down through overcrowding
Families with sick and disabled family members have an increased financial
burden and also an increased demand for their time and energy while providing
in-home care. Transporting the special needs person to the medical facilities
and welfare offices takes time and money and the results for the efforts
are often little or nothing. Frustration mounts in the home under the burden
of a single income and often families separate. The lone parent left to provide
the care for the special needs family member becomes isolated and in this
isolation and often poverty there is the rising incidence of depression.
A crisis is sometimes the only respite from loneliness, the only act which
will bring in outside help. Do we have to wait for the crisis?
Why is it that we as a society are willing to pay three shifts of employees
who have no vested interest in the life or well-being of their client to
care for a disabled person, the management staff to oversee the staffing,
the government staff to oversee the management of the care agencies and service
providers and politicians to make these policies but we are unwilling to
support a family in crisis or predict that these same circumstances which
repeatedly result in crisis and breakdown will produce the same outcomes
again and again? We will say it again – families need support, training, respite
and inclusion so that families can avoid crisis and stay together.
Role of the medical community
The first priority for addressing the needs of this population lies with
an informed medical community. An informed medical community can produce
treatment protocols and make appropriate referrals. An informed medical community
can support the family through testing, treatment recommendation and referrals
to medical specialists as well as alternative practitioners who also have
knowledge and experience with autism. A medically well cared for child is
more likely to receive the recommended services and therapies which are supported
by the child’s doctor and especially when those therapies are not well understood
by educational and social service workers. The next priority includes the
inclusion of Social Services, parent support groups and other resources
in the development of a network of information and programs whereby the
families coping with autism can receive a continuum of services – services
which are sometimes provided by the private sector, sometimes the educational
system and other times through organizations and individuals. In some communities
respite services are provided through social services, the school system
provides some before and after school programs in some areas, in some communities
this is privatised and in other communities these services are non-existent.
Respite and education
Respite care provision is paramount to reducing stress and preventing crisis.
Education and training are also a priority, not just for medical professionals,
social workers, teachers and classroom staff but also for lay persons and
students who may be valuable resources for working with this population.
In addition to educational programs which meet the needs of this population
we also need therapeutic recreation. People working and volunteering in these
areas are very often unfamiliar and untrained in knowing what is autism.
Most people can identify a blind person, deaf person or physically disabled
person from a young age. Most people cannot identify a person with autism
even when they are standing face to face. It is not reasonable to expect that
lay persons and potential peers have the skills to relate to the autism population
without training, so it has been much easier to exclude these individuals
than to include them in the community.
Exclusion remains as a primary concern and contributing factor to
reduced opportunities for people with autism. Inclusion in structured programs
have been shown to result in measurable gains in social performance and
related skills. Unfortunately few programs have evolved which have been
evaluated and recognized. The Clarkston Community Schools ‘LINK’ program
is a model which can be followed in providing training, structure, support
and educational programming for students with autism using trained and age
appropriate peer role models. Coordinating services and resources for autists
remains a major deficit area. The sudden explosion in autism left a vacuum
of leadership in co-ordinating at the community level. Parent support groups,
internet communities, advocacy groups have multiplied exponentially over
the last five years. Out of this new movement has come an explosion of information,
networking and community-based resources. With numbers approaching 1% of the
population now with autism, we are beginning to see community autism centers
which are becoming the first port of call for families and professionals seeking
information, assistance, crisis intervention, respite, training, medical
help and legal advice. So, with adequate and appropriate medical care, support
from social services and educational programs which meet the primary needs
and demands of this population we can then improve service provision through
inclusion in therapeutic recreation activities. An informed medical community,
education system and social services sector united in their intent to help
and support families coping with autism should have a cascade effect in communities,
resulting in increasing numbers of programs and services such as therapeutic
recreation programs which can benefit the whole community. People in the
community working and playing together with persons who have autism can increase
opportunities for job-related training, learning new skills towards independent
living and increased recognition and interest in how to best serve this population.
WCAP has developed its own models of therapeutic intervention, including
dietary and nutritional support along with comprehensive short-term residential
programs, individualized in-home programs and professional foster-care programs
based on the 'Therapeutic Foster Care' model developed by Dr. Bob Jones of
Appalachian State University, NC: 'Bringing it all back home - Professional
"to do whatever it takes to meet the specific
needs of children within family settings, thus enhancing their ability to
live fulfilling lives."
The aim of our programs is not to move the child from the family, but
to provide training and support to the family and other involved professionals
while bringing the child forward in a therapeutic and educational family
setting which can be the family home, or an alternative setting depending
on individual situations. The goal is family reconciliation and healing as
well as on-going support and training for the family.
Families and professionals need to know that there is now a wide range
of therapeutic, recreational, technological, educational and training options
that have been developed and have good success rates. Families shouldn't
have to travel around the world, or bring trained professionals from other
countries or search the internet for programs that could be made available
locally, provided by professionals trained locally by properly funded autism