"Parents are talking about this, but it's still not highlighted in the literature," said Dr. Nancy Walton, an associate professor at Ryerson's School of Nursing and ethicist who was speaking at a Bloorview Research Institute presentation yesterday.
Through qualitative interviews with 20 women, most of whom identified themselves as their child's primary therapist, Walton uncovered the following themes:
While professionals tell parents early intervention is key, an autism diagnosis typically meant that publicly-funded therapies were cut off, and the child was wait-listed for services. One mother noted that in order to get her child help at the age of four, he would have had to be diagnosed in utero. Another said that her non-verbal child had been on a wait list for speech since 20 months. He remained high on the list and was about to turn five.
Mothers took on the role of active therapist because publicly-funded therapy was rationed in inconsistent blocks or non-existent and they felt time was running out; they saw their child as a unique individual that they knew best; and through networking they heard about positive results from other parents who delivered most of their child's therapy. A therapist who wasn't able to provide the amount of therapy the child needed would offer to 'train' the parent to do the therapy at home. In addition to therapists, mothers viewed themselves as case managers in co-ordinating their child's team of physicians, specialists and therapists. Fifteen respondents did not work outside the home and a number described therapy as their new 'career.'
In order to deliver a gruelling 48 hours of therapy a week, moms integrated therapy into their everyday life, often dedicating a room in the house to the task. Interaction with their child no longer involved any 'down-time.' Every activity became purposeful and therapeutic, "making it difficult to be a mom," Walton said.
Respondents described their therapy role as more than a full-time job. They felt guilty if they weren't teaching their child every waking hour. The moms reported exhaustion and an inability to fulfill their role as spouses and to provide any one-on-one time to their other children. The respondents had no social life outside the home and considered their child's therapy their work life.
On a positive note, doing therapy often gave the moms the first effective way to interact with their child and when their child made progress, they felt rewarded.
The respondents identified the lack of resources to help mothers address exhaustion and take care of themselves.
They felt decisions about services and cut-off dates were arbitrary and ad-hoc. Walton, after analyzing the data, expressed concern for vulnerable mothers of children with autism who were new Canadians, didn't speak the language, had low literacy, or were single parents or isolated.
Dr. Evdokia Anagnostou, a neurologist and clinician scientist who focuses on autism at Holland Bloorview, asked whose mandate it was to protect the mental health of parents given the high levels of stress.
Walton said that the mandate may fall within our commitment to delivering family-centred care.