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Researchers share the importance of family participation in autism research at “Parent Information Day” in Edmonton, Alberta


By Charlene Prochnau (shown here with son Brayden), a member of the Family Advisory Committee of the Autism Speaks Autism Treatment Network (ATN). Ms. Prochnau is also a parent representative on the advisory board of the Autism Research Centre at Alberta Health Services’ Glenrose Rehabilitation Hospital, one of 14 ATN centers across North America.

I am pleased to tell you about an annual celebration at our Autism Research Centre in Edmonton, Alberta – one of two Canadian sites in the Autism Speaks ATN. Being part of the ATN provides opportunities for our families and clinicians to come together in a variety of research studies.

We celebrate the partnership of our families and research clinicians – with an annual Parent Information Day.  

On this day, parents and caregivers join with healthcare professionals and organizations from our community to learn about the latest research findings from our research center.

Our special guests on this day are the families who participated in our center’s autism research studies.

Also joining us is our community partner, the Autism Society of Edmonton Area. The Autism Society provides information about their extensive support services for families diagnosed with autism such as Occasio, their new respite program for teens and adults.

Our most recent information day took place at the end of May. After a welcome from Centre’s co-director Lonnie Zwaigenbaum, researchers shared the latest findings from three of our center’s ongoing research projects: The Canadian Infant Sibling Study, the Pathways in Autism Spectrum Disorder study and the ATN and Emergency Department Study. Panel and audience discussions followed each presentation.

Our Infant Sibling Study
Dr. Zwaigenbaum and one of his postdoctoral fellows – Lori Sacrey – explained that the Canadian Infant Sibling Study follows 6-month-old infants, some with siblings who have autism and others without a family history of autism.

At regular intervals, the researchers interview parents and observe and assess their children at our clinic. In this way, they can look for early indicators of autism. Among the “predictors” that emerged in their study is a strong connection to parents concerns about sleep patterns and motor skill delays at age 12 months and parent concerns about lack of social skill development, repetitive movements and loss of communication at 24 months.

These findings clearly demonstrate the importance of families voicing their concerns about a baby’s development and the need for physicians and other healthcare providers to take these parental concerns seriously. This is particularly true for parents who already have an older child diagnosed with autism.

We often hear that reliable early predictors of autism are so important for getting at-risk children into the early intervention programs they need to support their development and improve outcomes. Certainly the families in this study benefited from confirmation of their concerns as well as support in obtaining appropriate early intervention services.

Pathways in Autism Study

 Autism Research Centre co-director Joanne Volden updated us on the Pathways in Autism Spectrum Disorder study. Our researchers are comparing the development of 160 children diagnosed with autism. This includes 80 children from the Infant Sibling study and 80 diagnosed by community providers. Their findings indicates that very young children, even those with less severe symptoms or delays can be diagnosed early if carefully monitored and assessed – as they were in the infant study. This highlights an opportunity to improve early identification efforts through partnerships with primary care physicians – to ensure that children with autism are identified and helped at earlier ages – even those children on the milder end of the spectrum.

This study continues to highlight how important it is that our ATN centers share their findings with pediatricians and other healthcare providers in our surrounding communities and beyond. And again, the findings underscore how important it is for healthcare providers to listen to parent concerns and insights.

Following up on our Pathways kids
We also learned the results of an extension of the Pathways study. In it, our researchers compared the services available for preschoolers with autism and related developmental issues in five cities across Canada. More specifically, they looked at the services being provided to preschoolers 4 months after their autism diagnosis and again at 6 and 12 months post diagnosis, and finally, at the time they entered school.

The researchers looked at the different types of interventions and supports for autism – including behavioral and speech therapy and preschool and community programs. They compared when and how families accessed these services – either individually or in combination with other services.

I was struck by how, in some Canadian cities, more families took advantage of early intervention services during the toddler years. These same families tended to use fewer intervention services after their children entered school. After entering school, their children were more apt to be enrolled in community programs.

I had mixed feelings about this. On the one hand, I was heartened by the impression that families were seeking community and inclusive activities for their children. But I also wondered if this shift actually indicated a lack of structured therapy services for school-age children.

During the panel discussion, it became clear that parents desired more research to determine whether greater use of early intervention services was having a positive effect – in other words, whether their children were less in need of therapy services once they reached grade school. That would be good news, indeed. But we should also consider the possibility that it’s a lack of treatment services that necessitated the shift to community-based programs.

As a parent, I look forward to more research to answer such questions. I see it as progress toward answering the larger question of “Is there a ‘right’ combination of service that provides the best outcomes for children with autism?”

ATN Study on ER and Hospital Experiences
Finally, Dr. Zwaigenbaum updated us on the Autism Speaks ATN Emergency Department study. He introduced us to a courageous mom who shared her family's experience with their daughter, who was hospitalized more than a hundred times for a range of serious medical issues. Her first-hand accounts underscored the importance of hospital staff listening to a parent’s insights into a child’s sensory needs.

She shared the example of a brave nurse who was reluctant but willing to help her create a blanket swing to soothe her daughter. She described how amazed the nurse was at how a child hooked to tubes and monitors could find comfort in the peaceful swinging motion.

This, in turn, led to conversations with a doctor who provided further support, listening to the mother and documenting her requests in his instructions to the staff. In this way, the hospital provided the flexibility she needed to address her daughter’s autism-related sensory needs.

Her experience highlighted the importance of hospitals having “adaptation” programs for special-needs patients and for related programs that emphasize family-centered care.

One goal of the ATN Emergency Room study is to evaluate the effectiveness of a one-page questionnaire titled, “This Is My Child.” It’s designed to allow a family to provide hospital staff and other healthcare providers with important information about their child’s communication abilities, receptive skills and sensory stressors – all prior to treatment.

During the panel discussion, we talked about the great desire for a culture of family-centered care in our medical systems. We also discussed how difficult it is to make this a reality given our overburdened healthcare systems and time-constrained medical staff.

Still – as the mother’s story conveyed so powerfully – even one doctor can produce a culture change in a hospital and, in doing so, transform the experience for patient and family.

As always, it is the power of the experiences shared by brave parents like this mom that will ultimately change the culture of our hospitals and other health facilities.

A grateful parent
As a parent I’m always eager to learn about research, particularly when it values the importance of parent intuition.

Our Parent Information Day also provided a “Meet and Greet” opportunity to have discussions with researchers, other parents and community professionals.

In closing, I just want to say that I am so encouraged to see how study findings have the power to improve the healthcare experience of families who receive care in our ATN clinics and beyond. It’s exciting to see how the experiences of our ATN families are educating the healthcare system and hospital staff today. This bodes so well for the future of our children as they grow to be adults.

My sincere thanks to all the members of our Autism Research Centre involved in making our Parent Information Day a day well spent.

Editor’s note: Stay tuned to our weekly ATN@Work column for more on the Autism Speaks ATN Emergency Room Study and other family-centered ATN research.

* Learn more about the Autism Speaks Autism Treatment Network here.
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