NATIONAL NEGLECT OF
AUTISM SPECTRUM DISORDERS

Children and adults living with an Autism Spectrum Disorder, and who are now living with the effects, are a large and diverse group facing unique problems. While it is debatable whether there is a growing epidemic of Autism, the number of children being diagnosed is definitely increasing. Some researchers estimate that roughly one in fifty children could be on the autism spectrum yet the responses by governments has bordered on neglect for our future generations.

Historically there is always a slow response from governments in responding to disabilities. There needs to be firm proof the disability exists, then clear strategies for developing supports, and the emergence of welfare associations that can be funded. All of this has happened. There has been a measure of financial support by governments, but in most countries it is a drop in the ocean when looking at the magnitude of the issues.

Lack of specific supports

Service and support opportunities are limited, and community attitudes are restrictive, so adults on the autism spectrum face significant problems. Adults with Autism and Adults with Asperger's often face unemployment, difficulties in relationships, greater risk of alcohol and drug abuse, homelessness and inappropriate accommodation when support is required. In extreme circumstances, adults on the autism spectrum who exhibit challenging behaviors are being inappropriately diverted into the criminal justice system. Generic services that attempt to support adults on the autism spectrum often do so within a philosophical framework and operational culture designed for people with an intellectual or psychiatric disability.

Lack of appropriate schools

Children on the autism spectrum experience difficulties at school. At the milder end of the spectrum, so children with Asperger's syndrome may be in the general school system but with little formal support by teachers or the education system. Special schools for children with disabilities are not specifically set up to deal with Autism Spectrum Disorders so the child is in a system designed for intellectual disabilities. In many countries, any schools specializing in Autism Spectrum Disorders are privately run, hugely expensive and often require huge sacrifices from parents to afford the fees.

UNSUPPORTED FAMILIES

Inadequate and disjointed service systems place increased stress on parents and carers. Where specialist services are not available, parents report that their unmet needs are compounded by the complexities of dealing with multiple services, which may have differing or competing agendas, approaches and philosophical underpinnings. Needs of families also change over time in terms of increased emphasis on community and social support.

The enormous task of parents is compounded by the lack of community awareness. It is difficult to understand the anguish of parents when the wider community reacts negatively to their child as there is little understanding of Autism Spectrum Disorders in the wider community. The success of parents to support their child is often dependent on the acceptance and support they receive from the local community.

Lack of accommodation

In the 1970s, a push for closing institutions saw a push for moving people with disabilities into the community with appropriate supports. While this was ethically and philosophically a good step, for many governments this was an opportunity to cut costs. People with intellectual and psychiatric disabilities have a measure of support for community-based living that is often seen as meager - for adults on the autism spectrum it is non-existent in most countries.

This neglect covers short-term, long-term and transitional accommodation. Inappropriate placements and limited supports within the community commonly result in loss of contact with services and homelessness. Unsuitable involvement with acute psychiatric services and the justice system can be attributed to poor accommodation support.

Respite support

Respite services are often of an institutional tone. In many instances, these services are poorly equipped and under-resourced to assist children or adults on the autism spectrum who may also exhibit challenging behaviors. Local day activities and in-home respite services are usually not set up for people on the severe end of the autism spectrum, further compounding the paucity of recreation and employment opportunities.

Employment support

Vocational support is often available to people with disabilities, but very few are experienced with the specific issues raised by an Autism Spectrum Disorder. Generic employment support services may avoid people on the autism spectrum due to the complex nature of the extended support required. Effective support strategies and models of response are yet to be developed in most countries.

Advocacy needed

Much of the historic neglect of people on the autism spectrum has developed through a lack of education among government and non-government bodies. It would be reasonable to expect that if education, advocacy and behavioral support programs were addressed appropriately, generic services would be more willing and better equipped to respond effectively.

Click here for the full range of Asperger's and Autism fact sheets at www.autism-help.org
This autism fact sheet is licensed under the GNU Free Documentation. It is derivative of an Autism and Asperger's syndrome-related articles at http://en.wikipedia.org