AUTISM SPECTRUM DISORDER

Research Highlights

• Approximately one in 165 Canadians is affected by Autism.
• It is estimated that approximately 1,248 individuals are affected by Autism Spectrum Disorder (ASD) in Guelph-Wellington.
• The three greatest social services issues affecting individuals with Autism in Guelph-Wellington:
  • There is limited publicly funded services for adults with ASD in Guelph-Wellington.
  • The cost of Intensive Behaviour Intervention (IBI) treatment is expensive and the waiting list is an average of two years.  IBI has been shown to have positive impacts when implemented before the age of five. 
  • Respite care for families affected by Autism is a vital and needed service.

Research Profile on Health & Independent Living

What is Autism?
Autism is a complex developmental disability that typically appears during the first three years of life. It is the result of a neurological disorder that affects the functioning of the brain in the areas of social interaction and communication skills. Children and adults with Autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities.
 
Autism is one of five disorders coming under the umbrella of Pervasive Developmental Disorders (PDD), a category of neurological disorders characterized by "severe and pervasive impairment in several areas of development", including social interaction and communications skills (DSM-IV-TR).  The five disorders under PDD are Autistic Disorder, Asperger's Disorder, Childhood Disintegrative Disorder (CDD), Rett's Disorder, and PDD-Not Otherwise Specified (PDD-NOS).  Each of these disorders has specific diagnostic criteria as outlined by the American Psychiatric Association (APA) in its Diagnostic & Statistical Manual of Mental Disorders (DSM-IV-TR).
 
What Does Autism Look Like?
Autism is a spectrum disorder.  The symptoms and characteristics of Autism can present themselves in a wide variety of combinations, from mild to severe.  Although Autism is defined by a certain set of behaviours, children and adults can exhibit any combination of the behaviours in any degree of severity.  Two children, both with the same diagnosis, can act very differently from one another and have varying skills.
 
Autism is characterized by three general impairments ¹:

1. Deviant social development

• lack of interpersonal responsiveness
• failure to develop normal attachments and/or reciprocal relationships
  

2.      Delayed and/or unusual language or communication

• failure to communicate, either verbally or through gestures
• abnormalities in the form, content or production of spoken language
• failure to use language for social purposes
  

2.      Repetitive or ritualistic behaviour

• simple repetitive motor acts, involving either self or objects
• a preoccupation with and a rigid, compulsive adherence to routines
• more elaborate academic or artistic pursuits involving rote memory and limited comprehension
  

Prevalence and Incidence 
Although Statistics Canada does not track incidence rates of Autism Spectrum Disorders (ASD), the statistical prevalence can be calculated, based on detailed studies of sample regions from the United States.

Please note the age category for 25-44 year olds represents a 20 year span rather than five or ten measure. 
Source: Bloomfield, E. (August 2003). “Adults with Autism Spectrum Disorders in Wellington County, Ontario”, for OAARSN and GSA.

• Data was extrapolated from the Wellington County 2001 Census Population by Age Category
• The widely accepted prevalence rate of one in 165 persons (1/150 was used to compensate for statistical error) affected by ASD in North America was then applied as a ratio data/age statistical depiction

It is estimated that one in 165 Canadians are affected by ASD and over 20,000 people in Ontario today have Autism or some form of PDD. In Canada, that means more than 250,000 families are touched by ASD to some degree—with over 100,000 of them in Ontario. Throughout the world, it has been estimated that 48 million people have some form of Autism². In all studies, males are about 3-4 times more likely to be affected with ASD than females ³.

Is Autism Increasing?
Autism prevalence is generally thought to be increasing; though changing diagnostic criteria since the mid-1990s reflecting the increased recognition of a wider Autism Spectrum of Disorders and increased reporting are likely to be contributing somewhat to that increase ⁴.
 
Genetic factors are important in the causation of Autism but are not fully explanatory. Various environmental factors, including infectious and chemical agents, are known, suspected, or theorised to play a role, as well. Researchers report that the increase in the use of pesticides, gasoline additives, and aluminium additives in water and paint has affected Autism prevalence around the world ⁵. 
 
A recent study has suggested that paternal age may play a role in the likelihood of a child being born with Autism.  This study found that men over 40 were 6 times as likely to father a child with autism than men under 30 ⁶.  There does not appear to be any link to maternal age and Autism development.

Community Supports & Services (non-medical)

The Autism Society of Ontario (Wellington Chapter) is composed of parents who offer mutual support, provide information, as well as referral and advocacy for services on behalf of persons with Autism and Pervasive Development Disorders (PDD) and their families.  Families can also obtain two weeks of partially funded one-on-one care or special needs camp experience for their special child.

Community Mental Health Clinic (CMHC) delivers a range of government funded developmental services, including Special Services at Home, Infant Development Program, Behaviour Therapy, Complex Developmental Disorders Team, Psychological Services, and Special Needs Child Care.  CMHC also works with the Wellington Development Services Planning Group to enhance respite supports for families.

Family Counselling and Support Services for Guelph - Wellington provides case management services for individuals of all ages with ASD.

Guelph Services for the Autistic (GSA) functions as a housing trust for adults with autism; helping adults make choices about their lives regarding with whom they will spend their time and share their homes. In addition, GSA provides information and communication services through its OAARSN website: Ontario Adult Autism Research and Support Network at www.ont-autism.uoguelph.ca.
 
Hopewell Children’s Homes Incorporated – Stephanie House is a five-bedroom house providing residential respite care for children who are experiencing behavioural challenges resulting from ASD, dual diagnosis or other causes. Residential respite varies from one day to six months in extreme circumstances. Admission requirements compose of the following: resident of Wellington County, under 18 years of age, and enrolled in a school.

Kerry’s Place Autism Services of Wellington Region serves children, families, and adults with ASD. It provides supports including consultation to individuals, families, schools as well as social groups, parent support groups, and educational workshops. Employment support is also provided to individuals with ASD between the ages of 16 and 25.

The National Service Dogs Training Centre is the first Canadian Assistance Dog School to successfully pair dogs with children who have autism. The aim of this program is to improve the quality of life, the independence and safety of Autistic children.

Wellington Developmental Services Planning Group is comprised of a group of local service providers, funders, community representatives and consumers/families. They meet monthly for information exchange and system planning. The goal of the committee is to create a local developmental services system which addresses the needs of people with developmental challenges and their families.
 
Of the above mentioned services, the United Way of Guelph & Wellington County supports the Autism Society of Ontario – Wellington County Chapter and its Summer Program.

What are the Social Service Issues in Guelph and Wellington?

Limited Services for Adults with ASD
There are limited publicly funded services for adults with ASD in Guelph-Wellington ⁷. These include:

• Ontario Disability Support Program (ODSP) offers income support for adults with development disabilities; however, those with higher functioning Autism may find it harder to qualify
• Adults who can tolerate group settings (or who have had no other choice) may be served in group homes for adults with developmental disabilities, and may attend day programs run by Community Living Guelph Wellington
• Adults living in their parents’ homes may qualify for Special-Services-at-Home funds; but the average number of hours funded is very low (under 6 hours)
• Community Mental Health Clinic offers a behaviour therapy service that is intended for children and adults who are having behavioural difficulties that are associated with a developmental disability.  This service is limited as there is currently one full-time behaviour therapist servicing the entire Guelph-Wellington area
  
• Family Counselling and Support Services recently extended its ASD case management service to include adults. They have adopted a strategic/resource case management service, which has helped to reduce long wait lists. According to GSA, the lack of direct Autism-specific services for adults in Guelph-Wellington (to which case managers might refer persons and families) limits the value of this service
• Kerry’s Place offers an Adult Autism Social Group
• Other developmental service agencies within the region do not exclude individuals with Autism, however, it is up to those persons and their families to adapt and conform to the settings/services that are not designed for them  

High Cost and Long Wait Lists for Intensive Behaviour Intervention (IBI)
IBI is a program designed for children aged two to five with ASD employing systematic methods to change behaviour and promote development. IBI professionals work either one-on-one or in small groups.  IBI is intensive and typically involves 20 to 40 hours of direct service per week. It is an individual program with goals that are based on a thorough assessment of each child's unique strengths and needs helping to develop skills for greater independence. Early intervention is key, as research indicates dramatic positive outcomes when IBI is implemented before age five.
 
Funding IBI treatment, however, is expensive. Treatment ranges from $30,000 - $80,000 per child each year, and is estimated to cost $250,000 to complete treatment ⁸. Although, the province has boosted funding for Autism by $40 million and claimed to have reduced assessment times, parents continue to face long waits for treatment or are forced to hire specialists in the private sector to administer therapy.
 
Currently, the waiting list for IBI treatment on average is two years with approximately 1,200 Ontario children languishing to date. To compound the issue, children who turn six while waiting are no longer eligible for the services⁹.
 
Family Stress and the Need for Family Respite
Research indicates that parents of children with Autism experience greater stress than parents of children with mental retardation and Down Syndrome ¹⁰. This may be a result of the distinct characteristics individuals with Autism exhibit: being unable to express their basic wants or needs; deficits in social skills; and/or lack of appropriate leisure skills. All of these deficits and behaviours are physically exhausting for families and emotionally draining. In addition, not being able to do things as a family or as a couple alone can impact the marital relationship causing great stress.
 
Families may also experience reactions from society, friends, and relatives contributing to feelings of isolation. Finally, having a child with Autism can drain a family's resources due to expenses such as evaluations, home programs, and various therapies. Lone parent families experience an even greater financial burden.
 
Siblings can also experience potential sources of stress. They include:

• Embarrassment around peers
• Jealousy regarding amount of time parents spend with their brother/sister
• Frustration over not being able to engage or get a response from their brother/sister
• Being the target of aggressive behaviours
• Trying to make up for the deficits of their brother/sister
• Concern regarding their parents’ stress and grief
• Concern over their role in future care-giving
  

The Wellington Developmental Services Planning Group has been working to augment the existing continuum of respite supports in Guelph-Wellington.  Some of the projects and activities that they have supported recently include:  the new Playsense facility operated by Hopewell Children’s Homes; Kid’s Country Club – a facility that offers respite for children who are medically fragile and technology dependent; and the Mount Forest Community Living facility which offers respite for adults living in north Wellington.

1. Autism Society Ontario (n.d.). The Importance of Early Diagnosis in Autism.  Retrieved June 3, 2005, from http://www.autism.org.au/THE%20IMPORTANCE%20OF%20EARLY%20DIAGNOSIS.htm.
2. Autism Society Canada (2005). Research into Prevalence.  Retrieved June 5, 2005, from http://autismsocietycanada.ca/asd_research/research_prevalence/index_e.html.
3. Ibid.
4. Autistic Society (2003). Autistic Society: Autism Statistics. Retrieved May 22, 2006, from www.autisticsociety.org/autism-article-topic-18.html.
5. Shattock, P. (1999). Environmental Factors in the Causation of Autism. Paper presented at the Durham Conference 1999.  Retrieved May 19, 2005, from http://www.osiris.sunderland.ac.uk/autism/envirofactor.htm.
6. Von Hahn, Karen (2006). “Male Biological Clock”.  The Globe and Mail, Toronto, October 14,2006.
7. Bloomfield, E. (2003). Adults with Autism Spectrum Disorders in Wellington County, Ontario. Retrieved May 15, 2005, from http://www.ont-autism.uoguelph.ca/Guelph-Well%20Adults%20with%20ASD%202003.pdf.
8. Smyth, J. (2004, March 30). The Battle for Autsim Treatment.  The Globe and Mail, p. A13.
9. Ibid.
10. The Autism Society of America (n.d.) Living with Autism - Stress on Families. Retrieved May 16, 2005, from www.autism-society.org/site/PageServer?pagename=LivingwithAutism#Stress.