People with autism spectrum disorders need co-ordinated services

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The Autism Society, Newfoundland and Labrador (ASNL) is a non-profit, provincial organization dedicated to fostering development of individualized, lifelong, community-based supports and services for persons with autism and their families.

ASNL had its beginnings in 1982 as a support network for parents and professionals across the province working to improve lives affected by Autism Spectrum Disorder.

The society has grown considerably — it now consists of four regional staffed offices (Avalon, Eastern, South Central and Western) and parent support groups.

The main provincial headquarters is located at Shamrock Farm in St. John’s, in the Elaine Dobbin Centre for Autism.

ASNL is committed to the promotion of acceptance, independence, productivity and opportunities for inclusion in all facets of life for persons with autism spectrum disorder and their families. In working towards these goals, we provide a number of programs, services and supports to individuals and families affected by autism throughout the province.

Autism spectrum disorders (ASDs) — autism disorder; Asperger’s disorder; pervasive developmental disorder not otherwise specified (PDD-NOS) — are connected by a symptom set including impairments in social interaction, verbal and nonverbal communication and by restricted, repetitive and stereotyped patterns of behaviour.

ASDs are a growing concern in Atlantic Canada and the entire country with incidence rates steadily increasing since 2001.

Statistics suggest prevalence rates increased 10 to 17 per cent annually in recent years. Autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) identify one in 68 American children (aged 12 and under) as on the autism spectrum — that represents a tenfold increase in prevalence in just 40 years.

We accept that same statistic here, in the absence of any national epidemiological study in Canada. Careful research has shown this increase is only partly explained by improved diagnosis and awareness — we know incidence rates amongst children and youth are increasing.

Studies also show that autism is four to five times more common among boys than girls. We know we have perhaps 1,100 children with ASD from birth to school-leaving age from statistics provided by the departments of Education, and Health and Community Services.

Very little is known about the prevalence, age and sex distribution of adults with ASD in Atlantic Canada, and very little has been documented about the needs and gaps in service to adults with ASD. Transition protocols are absent.

The challenges are similar for all persons with autism and their families in Newfoundland and Labrador:

    ‰ Access to diagnosis — there is a shortage of diagnostic expertise in the field of Autism Spectrum Disorders; therefore, families have to wait too long for a diagnosis for their children.

    ‰ Access to treatment — ASD treatment plans are unique to each individual and require the collaboration of different health-care professionals; access varies greatly around the province.

    ‰ Lifespan supports — It is crucial to remember that children living with ASD grow up to become adults living with ASD. They are Canadian citizens with a need for continuous support that evolves over their entire lives.

    ‰ National standards — There are no national standardized protocols for diagnosis and treatment; therefore, diagnoses and treatments vary from province to province.

ASNL has engaged a research team from Memorial University to administer a needs assessment to the entire community of persons with autism and their families throughout the province.

This research project can significantly impact the type of services, delivery of those services, and timely access to those services by all those with autism, including the clientele ASNL serves.

Geographic location, individual costs of accessing services, parent and caregiver ability to navigate bureaucratic systems administering services, the lack of effective co-ordination of service delivery across government departments and community agencies and organizations — each of these factors, and others, have been highlighted many times as challenges that need real solutions identified and implemented.

It certainly is true to say people with autism receive treatment and services through a wide variety of providers in Newfoundland and Labrador — Health and Community Services, Children and Youth Services, Education, Advanced Education and Skills, Justice, ASNL, supportive employment agencies like Visions and Avalon Employment, community organizations like the Vera Perlin Society, Association for Community Living, Learning Disabilities Association — and the list goes on.

Service delivery is largely unco-ordinated and can result in poor outcomes, lengthy waitlists and inefficiencies in the system.

For example, adults with autism spectrum disorder living in our province have no one central point of intake and waitlists for diagnosis have approached 24 months in the past.

It’s not uncommon to see families travelling to Nova Scotia, for example, for faster and early diagnosis to access early intervention, because families today know how critically important it is to future success and quality of life.

Being an educator for 37 years, and serving 30 years as a school principal before moving to the district office, I witnessed the tremendous difficulties of accessing services for youth in high school who suffered with anxiety, depression, conduct disorder, eating disorders — and ASDs.

Youth who are suffering should not have to attempt suicide before they can access timely support services in the community. Sadly, not all my students had failed attempts.

Nor should people with autism, younger or older, ever need to be dropped off at government buildings because parents are unable to cope any longer with the lack of supports and services.

I have tremendous hope for this needs assessment research — there is an opportunity for the MUN research team to identify very real service gaps and make concrete recommendations for improvements. Improvements will enhance quality of life.

Scott Crocker is the executive director of the Autism Society, Newfoundland and Labrador.

Organizations: U.S. Centers for Disease Control and Prevention, CDC, Children and Youth Services Vera Perlin Society Association for Community Living Learning Disabilities Association Autism Society

Geographic location: Atlantic Canada, Newfoundland and Labrador, Nova Scotia

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