Tuesday, 17 November 2015

Parents, Families and Partnerships: Issues and considerations Carlyn Ryklief

Linda C. Eaves, Helena H. Ho



Parents, Families and Partnerships:
Issues and considerations                               



Journal of Autism and Developmental disorders


(2008) 38:4





Springer Science + Business Media
Online publication

PURPOSE (authors
To inquire into the quality of lives of young adults diagnosed as children with ASD, based on work, friendship and independence of children born in the 1970’s and 1980’s as compared to earlier results of those born in the 1950’s and 1960’s
(clinical, educational,

Government and support agencies, Parents, professionals who work with autism, autistic children, families,.

Research Questions/Aims
(if research based):                                

In terms of work, independence and friendship how did current outcomes compare with earlier reports?

Were there additional diagnoses or health  concerns?

What medication was used?

Were respondents  active physically?

Was outcome dependent on the extent to which child was handicapped?

What was the quality of life of respondents

How much community support did they receive?

Were respondent’s needs meets met as far as the family was concerned?

What did parents find helpful/ unhelpful when they were raising their children?


An Interview consisting of quantifiable questions about current health, physical activity, education, public supports, work and friendships. Some questions were rated on a 1-5 scale and 2 were open ended questions.
Type of research:

Sample size and composition:

Forty eight young adults born between 1974 and 1984 and diagnosed with ASD at Sunny Hill Health Centre for Children in Vancouver British Columbia as preschoolers, were interviewed for up to 2 hours by a research assistant.

Other respondents were, 38 mothers, 2 fathers, 3 both father and mother, 4 foster mothers and one home group manager.


Respondents were given a choice re: participation

Respondents were telephoned and answered questions which lasted about 2 hours.

Data Analysis:
Each young adult was given a  global rating (Overall Outcome Rating OOR) used by previous autism researchers, allowing for a comparison.


Summary of

Verbal IQ was the best predictor of outcome.

Most helpful were family members like their spouses, grandparents and teachers or aides.

Least helpful or harmful was the school system, the negative attitudes, bureaucracy in government, the lack of adult services

Parents and caregivers felt young adults with ASD were lacking in  independence, economic status and still had behavioral challenges. The outcome was mixed, with half having fair to good outcomes.

This was a better  outcome than previous studies. Sixty percent lived at home and no one lived in institutions.  Many had menial, often sheltered or supervised jobs, for a few hours.

Four lived semi-independently. Most resided with their families and were in receipt of financial government support.

There were not as many of the negative symptoms noted by Billstedt et al (2005)

Strengths and

Using the same tools allows one to compare current results with previous results on numerous criteria of relevance to educators.  It allows teachers and government agencies to identify which factors are of lasting and memorable importance to parents and young people with ASD.

Most valuable was the people, not he method of treatment or the program. These included teachers, aides and support workers.

Reports were  parental interviews instead of their children being re-examined and tested.

The authors admit to the possibility of their sample limiting its generalization. Perhaps the most positive ones, they propose may have participated.

Sampling bias was admitted to possibly have been responsible for the improvements.

Telephone surveys, though not as intrusive may have produced less precise  results than  face to face interviews

Contribution to the ASD

The study showed that despite the advances made in opportunities, research and support, improvement in outcome has not reflected this significantly. It also highlighted the need for greater support  for adults.
Other information not
covered that I consider

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