Our experience of working in many different settings
worldwide is that the institutions where autistic children are cared for
and educated, and the social service system designed to administrate their
care, are collapsing under the burden of this ever increasing and tremendously
challenging population. Of course the policies and procedures have improved
tremendously in some areas. In England, we worked at the last hospital ward-based
adult facility, where people were institutionalized for life, stripped of
their civil rights and human dignities. These have been replaced by community-based
housing where residents live as normal lives as possible, supported by professional
care workers. Of course the legacy of institutionalization means that the
transition is not easy for many of the clients, who are simply not used
to questions such as ‘what do you want for breakfast?’ The privatization
of the care providers means that financial pressures often lead to threadbare
provision of services.
The literature tells us that the most
rapidly chosen professional response to behavioral crisis is drugs and more
drugs. Many of the drugs prescribed to children, including young and very
young children have not even been approved for the uses they are being prescribed
for. Recent cases have come to the media attention of pharmaceutical companies
pushing ‘off-label use’ of pharmaceuticals, using marketers with phony medical
Psychology and behavioral psychology falls
short of treating the cause of these 'behavioral problems' (or symptoms).
The daily media coverage of increasing murder and suicides in families facing
the challenge of raising children diagnosed with the conditions which result
in behavioral crisis is leading to demands for answers. The demand for
answers has fallen not on deaf ears but rather onto the shoulders of the
government policy makers and funding bodies. The government has turned to
their ‘elite’ medical experts at the Center for Disease Control (CDC), National
Institute of Health (NIH) and the World Health Organization (WHO) for answers.
These people are pointing their fingers at the Food and Drug Administration,
Food and Agricultural Association, private industry, pharmaceutical companies,
educational system as the numbers continue to rise. The epidemic is here
and it is called autism – withdrawal from the fabric of social life.
The Model of Excellence Community
People with autism spectrum disorders come in
all shapes and sizes and levels of ability. Some will need and potentially
benefit from intervention, some have coped with unrecognized autism successfully,
living full and productive lives. Some experience autism with co-occurring
conditions, additional injuries and insults and some present with signs and
symptoms which are so severe many believe that there is no course of action
which can result in measurable improvement. This is where we begin, with recognition
that people with autism are people experiencing some limitations which are
a direct result of a recognized bio-medical condition.
Our work is in healing, finding solutions, strategies for recovery,
community-based options for caring and educating. One option that we envisage
is for an individualized program that combines dietary, educational, behavioral
and sensory methods as well as additional therapies and treatments where needed,
which can be put together in any locality using information, resources and
professionals locally available. Another strategy is the development of multi-functional
vocational training centers which also function as crisis and foster care
program centers, deflecting the crises that are destroying families and providing
real, flexible community-based solutions.
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 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.
Coordinating services and resources for
autists remains a major deficit area. The sudden explosion in autism has 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.
Education and vocational training
One of the primary goals of education is to teach
skills which can be used towards the individual taking their rightful place
in the community. Time and time again the education system focuses on weaknesses
rather than strengths. The Japanese system seems better equipped to provide
educational services which result in positive outcomes for people with autism.
With schools seeking to terminate educational programs early through dismissal
for behaviorally challenging children, the cry for services and programs
needs to be stronger and louder. Instead of expelling the child, terminating
their education, the education system needs to be held accountable for providing
programs which result in marketable job skills. The individuals with disabilities
who require further education may need to be accommodated in schools longer
until they have had time and opportunity to develop their skills and talents.
More guidance counsellors, more networking with the community, more demands
on the community for developing job placements and more demands on the government
for recognizing the crisis.
Magic of the Family
Family: A group of people who live together,
usually consisting of parents and children. A group with something in common.
Unlike the families in the therapeutic foster care program, a family who have
a biological child or children with autism were not adamantly discouraged
from bringing a child into the world. There was no one screaming – ‘guys you
really do not want to do this!’ In a program which is a Model of Excellence,
the staff and professionals will know exactly what type of individuals they
will be providing services for and what risks are involved. Full staffing
will be guaranteed through onsite housing and adequate reinforcement to maintain
a continuum of care which is vital to the program’s effectiveness. Preparatory
planning would involve people fully trained in the areas which are required
and are essential for these people to provide the quality of care expected
and set forth in the program guidelines. It would be expected and hoped
for that the job placements would result in increasing personal skills development
and provide training so that staff members can move forward in their own
careers when they leave the Model of Excellence care facility. Anticipating
the staffing changes will require that ongoing training and preparation for
staffing changes is expected and these changes will not result in program
disruptions which are so common now in educational and supported living programs.
Parents and family members have a vested interest in the outcome for their
family member who requires services and care, and these family members will
be an integral part of the program when it is feasible for the family.
Primary services provided in our residential
Model of Excellence program for each client will include nutritional assessment
and a developed behavioral nutrition recommendation. Included in the program
will be a comprehensive behavioral analysis and behavioral strategies developed
to bring about a transformation in behavior and attitude. Educational assessment
will be provided and specific recommendations will be developed for each
client, based on level of attainment, personal qualities and aspirations.
The program is not intended as a permanent placement away from home. The
intention is to bring about a transformation in the individual and the family
that were experiencing crisis. A continuum of services would need to be included
in the transition from the Model of Excellence program back to the home and
educational or residential school program to which the individual were being
relocated or returned. All program recommendations for Individual Education
Planning will fall within a spectrum of services, accommodations and IEP
goals and objectives which have been included in the primary working documents
for provision of care.
Model of Excellence programs will be provided
with optimal staffing, expert therapists and professional evaluations. Onsite
housing and educational services will be provided for onsite care staff and
clients when appropriate. Offsite programs will be included and the transportation
needs will be assessed for offsite travel. Managed peer group activities
should be included in the Model of Excellence program and these will incorporate
therapeutic recreational activities. A video introduction including information
regarding the individual’s special needs can be used as a tool for integrating
the individual into a new peer group.
Healing the planet
We are in crisis and to recover we must allow
our people to pursue unconditionally their search for knowledge and apply
that knowledge to healing the planet and the people. A sustainable planet,
a sustainable government and a sustainable religion must recognize that the
desire for inclusion or exclusion of an individual is equally as powerful
as the desire of the government or religion to include or exclude. One person
forced in or out can become a voice so loud as to dismantle a utopia, a democracy
or a monarchy.
The pinnacle of our human crisis is reflected
in the epidemic we call autism – a withdrawal from the fabric of social life.
So far separated from society are these individuals that they cannot be used
as pawns in the games being played by governments and religions. Some call
them the ‘light children’ as they open our eyes, our hearts and our minds
to the current human condition, make obvious that which has been hidden,
force the fence-sitters to get off the fence and recognize their own position,
to reflect, become motivated and take action.
Each movement, each step now taken quickly
in an attempt to understand what is happening and what can be done is leading
us towards tolerance, unconditional education, government accountability,
a restoration of faith, a return to the basic human hierarchy of needs – safety,
warmth, nourishment and unconditional love.
As we are forced to care for this population
we will come face to face with ourselves – the physical bodies which demand
attention and the spiritual bodies fighting inside to be recognized and respected.
The steps we take now as humanity will work towards coping with the global
crisis, will forge the bonds of allopathic and alternative as respected
forms of medicine used for healing, will forge the bonds of education which
embraces unconditional and untraditional methods, will forge the bonds of
religious tolerance as the families seek guidance, not from the religious
leaders, but from their own religious experience and the innate ability of
the soul to communicate with its Maker.