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diagnosed with autism: managing therapies, routines and resources
10 minute read
along with certified behaviour therapists, intensive behavioural intervention for autism can involve working with speech pathologists, child development specialists, psychologists and occupational therapists.
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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.
“now we have a label on what was happening,” he says of his diagnosis of autism spectrum disorder (asd), a lifelong neurodevelopmental condition that affects sensory processing, social communication, ability to carry out tasks, and emotional and behavioural regulation.
one particular event scared his family and prompted the decision to get assessed. the family was going to the vancouver aquarium while on holiday before they moved to the city. petherick started to get overwhelmed sensorily and left to walk back to the hotel, without saying anything. his wife was even more upset when he couldn’t explain his behaviour. “i didn’t understand it either,” he says.
“looking back, i realized that i organized my entire career to handle my autism without knowing about it. i think the longest thing i ever did was i played for les mis [les miserables] for two years. but i was also doing other things at the same time, like a little teaching, so i was doing all these intense short periods of work where i had control. and not that i wanted the control, but it allowed me to handle my differences in a way that i didn’t even know it was happening.”
basically, he was able to control how much social interaction he had in his work with limits on rehearsal times, specific times for performances, and a lot of hours working with only a small number of people.
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“professional music gigs also usually have built-in breaks, so i didn’t have to worry about when to eat or forgetting to do so,” he adds. “and, of course, much of music-making is solitary with solo practice and composition.”
having a diagnosis as an adult, teenager or young child helps individuals and their families understand the individual’s unique combination of symptoms and symptom intensity. the spectrum is broad, and the condition can be different for every person.
here’s how you can manage an autism diagnosis.
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.
needs change over the lifespan of someone with asd, just as they do for neurotypical people, so connecting with your care team regularly is important to monitor physical and mental health. also noteworthy, autism is considered a whole body disorder with several medical conditions shown to be significantly more prevalent in people on the spectrum than the general population, so knowing what to look for is critical to getting appropriate treatment.
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some common co-occurring conditions are autoimmune conditions, seizure disorders, gastritis, reflux, asthma, eczema, allergies, respiratory infections, migraine headaches and food intolerances. a co-diagnosis of attention-deficit hyperactivity disorder, or adhd, is also prevalent with interventions including medication to help with focus and self-regulation.
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.
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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.”
as the authors point out, prior to the early 1960s, many experts thought that children with asd were unlikely to respond to treatment. by the 1980s and ’90s, research on infant and child development led to more detailed models of early developmental learning processes in communication, language and social learning.
these studies were soon carried out in autism as well, developing a more sophisticated understanding of the early core social and communicative impairments linked with asd. around the same timeframe, the new field of applied behaviour analysis, or aba, was established to understand the science of human behaviour and environment.
now aba is exploring “naturalistic” ways to help people learn in naturalistic and interactive social contexts, like play and daily routines, and incorporate the individual’s likes and interests. aba is considered a best practice for children and a focus of government-funding support.
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.”
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however, the authors also note the need for clear standards of care for the treatment of asd, that is not limited to aba therapy, to evaluate and determine gold standard treatment options.
along with certified behaviour therapists, intensive behavioural intervention can involve working with speech pathologists, child development specialists, psychologists and occupational therapists.
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.
the program is parent-mediated, so parents or caregivers learn a set of strategies for helping their toddler communicate and interact socially with the support of a coach and a parent manual. it focuses on child communication words and gestures and sharing positive experiences and emotions with parents. access to the program does not require a formal diagnosis of asd, unlike many of the services and supports across the country.
“it’s play-based fun, based on their child’s interests, and it helps parents recognize those cues of autism like their child is a bit harder to understand or to really watch for what their child is interested in,” says brian.
“if you think about what’s happening in those toddler years is that your first relationships are with your primary caregivers – and that’s how you’re learning about communication and interaction, so that’s where we like to get started. we’ve done a lot of research and have a lot of great outcomes for the kids, and parents are telling us they feel empowered. helping parents feel successful with their little ones is huge.”
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she also stresses that many things are easier to learn when you’re younger, between age 12 months to 36 months, when your brain is “ripe for learning” and when the bulk of early learning takes place naturally. “that’s when kids are learning to communicate with words and gestures and connecting socially. that’s why we feel access to interventions early is important.”
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.
brian also wants to reassure families of children who are diagnosed a bit older that there’s no time where it’s too late to learn. “it’s not like the door closes to learning, it’s just that there’s a rich opportunity for learning that happens early on.”
develop a structured routine
change can be hard on anybody. people feel more grounded by familiarity, routine and knowing what to expect. change can be especially upsetting for people on the spectrum because it feels new and unpredictable, which can create anxiety.
maureen bennie, a calgary mom of two autistic adults in their 20s, created the autism awareness centre in 2003 to help with peer-to-peer guidance and support for individuals with asd and their families. she’s written several books and blogs on the centre website, including the importance of routine and steps to prepare individuals for changes in routine to help manage transitions.
use visual strategies to illustrate a daily schedule, for example, where you can highlight any changes that are happening that day, she writes.
visual aids can be more effective and less stressful than giving a verbal explanation or instructions. “visual supports are the cornerstone of communication. they provide structure, routine, consistency and predictability. when a person understands the expectations and knows what to do, they are more independent and confident,” bennie notes.
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visual schedules also can be used to teach a variety of skills and aren’t just for showing what comes next. you can create structured activities that show all of the steps for a task including how to start and finish, she advises. “not knowing how to start or finish something can cause great anxiety.” those visual supports can be symbols, tactile objects, photographs, videos, line drawings or coloured pictures, based on what the person prefers and understands best.
another tip is to allow extra time for people with asd to process the information around any change to routine, which means not rushing, moving step-by-step and providing explanations of what is going on, possibly with visual supports.
it’s also important to learn how to be flexible and cope with change, so changing the routine order occasionally is a good way to start, like physically moving a piece of furniture in a room, introducing a new activity into the usual routine, and preparing for the unexpected. this could be setting the table but forgetting a utensil, for example.
these strategies are encouraged in school curriculums as well with the move toward more inclusive and effective learning for students with asd and other learning challenges.
reach out for support with autism
at autism canada, which works with sister partner organizations across the country like autismbc and autism ontario, help and support really is a phone call away. petherick says a key piece in managing an asd diagnosis is finding support and networking with peers.
“we as an organization probably save one to five people’s lives per week,” he estimates. beyond calls in crisis situations, he often hears from someone who is at the end of their tether. “they have no idea what’s going on or where to turn. we can give them some hope and resources, assuring them that they are not alone. other people are going through this and survive. then we’ll get the email saying, ‘you’ve changed my life’ or ‘you’ve saved my life.’
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petherick is usually the representative who responds to autistic adults because of his own lived experience. much of what he does is reassuring people that they are not alone. “so many autistics think, ‘my behaviour is so unique and strange that nobody must be like this.’ so often i’m just saying, ‘you know, that’s exactly what i do. or i have 15 people i’ve talked to in the last week who also do this and are also struggling with this or have a strength in this.’”
reach out to autism canada for more information.
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