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 These have been replaced by community-based housing where residents live as normal lives as possible, supported by professional care workers.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.

  Today’s autism experts post statistics which include that 0.6 percent of the human population have autism (Frith). Center for Disease Control reports 1 in 150 with autism, and school age children with autism have reached as high as 1 in 89 in some areas of the UK. 1 percent of the US population is reported to have epilepsy and current statistics reveal 40 percent of the population with autism have already developed epilepsy.

Families in 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.

  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 and underfunding. 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?

  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 credentials.

  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.