diagnosed with autism: managing therapies, routines and resources

for bruce petherick, his diagnosis of autism in his 50s helped him and his wife make sense of his behaviours. he is an accomplished musician, composer and educator in choir and musical theatre first in his home australia and then in canada after he moved to calgary in 2001. now at age 60, he lives in vancouver and works as an autistic advocate and family support person for autism canada , a national advocacy and support organization for the autism community.

understand your autism diagnosis

the first step to navigating autism care and services in canada is learning about asd and how it can influence learning, behaviour and needs. autism canada is a starting point for help and a wealth of resources, including screening tools that help identify developmental delays in children and behaviours and challenges in teens and adults.

professionals with specific training, including doctors, paediatricians, psychologists and, in some communities, nurse practitioners, can complete an assessment and make a diagnosis, although most clinical guidance documents recommend a team-based approach, led by a primary care provider. for children, the team can also be led by a paediatric specialist or clinical child psychologist, according to the canadian paediatric society .

pain and discomfort, like headache, earache, sore throat, constipation, diarrhea, muscle and joint pain can be a part of asd as well. these are outlined in medical comorbidities in autism spectrum disorder, a primer for health care professionals and policy makers to help professionals identify challenges.

petherick highlights issues with sleep and gut as being highly common, along with “masking” autistic traits so that others won’t know they are on the spectrum. masking can lead to “autistic burnout” symptoms of anxiety and depression because of trying to keep up with the effort to mask the condition, notes the toolkit from autism speaks canada . asd is complex and many people on the spectrum require long-term support.

reaching out to the autism canada family services team to talk to petherick and his colleagues – 1-800-983-1795 or info@autismcanada.org – can answer your questions about autism resources and how to access them. the organization’s national presence has helped to create a database of resources for individuals, caregivers and professionals.

the autism junction online document is categorized by province and territory, and divided into age categories, where you’ll find support programs and contact details, including employment agencies for adults. another important resource is the provincial and territory funding document that outlines the funding, services and support for people to navigate what can be a complex web of information. both documents are reviewed and updated regularly.

explore therapies for communication and skill-building

for children and adults, intervention therapies for speech, behaviour and social communications have been a focus of growing research and practice. the earlier the diagnosis, the better for finding therapies that can help overcome challenges. as one group of autism researchers wrote in the journal of autism and developmental disorders , “our increased ability to identify and diagnose children with autism spectrum disorders (asd) at ever earlier ages provides us with both an opportunity and a challenge. the last 20 years of research have demonstrated both methods for identifying asd in even younger children, and also methods for improving outcomes of those children through specific early intervention practices.”

a comprehensive 2022 scoping review of the literature, published in perspectives on behavior science , confirms aba’s positive effects with “overwhelming positive improvements in the majority of study records with respect to cognition, language development, social skills and communication, and adaptive behavior, along with reductions in problem behavior.”

jessica brian, a senior clinician scientist and psychologist at the bloorview research institute in toronto, ont. who works with families and young kids on the spectrum, says that early intervention can also empower parents and caregivers with great results. her team has developed a program called the social abcs for toddlers showing social-communication challenges that may be signs of asd and for those who have a confirmed diagnosis.

with waitlists of more than a year for a diagnosis in some cases, her centre also runs project echo , an initiative to support community paediatricians so they have the skills and confidence to make the asd diagnosis without families having to wait.

develop a structured routine

use visual strategies to illustrate a daily schedule, for example, where you can highlight any changes that are happening that day, she writes .

reach out for support with autism