Category Archives: Autism Videos at ACT

Fostering Well-Being in Autistic Girls and Women

Recordings from day one of a two-day event in November 2022

Girls and Women are often overlooked in autism research, clinical training and service provision. Due to difficulties reading social cues, autistic girls and women, in general, are disproportionately victims of bullying, sexual assault and abusive relationships. Mental health challenges such anxiety, depression, panic, eating disorders, ADHD, OCD and addictions are exacerbated by the lack of awareness of the needs of women and girls. By shedding light on their experiences and providing practical strategies, we can support autistic girls and women to thrive.

This presentation offers practical insight for professionals to better understand how to support autistic girls and women, including case studies. 

About the Presenter

Dori Zener, MSW, RSW

Dori Zener, a Registered Social Worker, has been working with neurodivergent individuals and their loved ones for over fifteen years. As an Individual, Couple and Family Therapist, Dori uses person-centred evidence-based therapy techniques to help each client achieve their goals and enhance their lives. She is the Director of Dori Zener & Associates, a neurodiversity-affirming mental health agency in Toronto.  Dori is passionate about autism acceptance. She endeavours to expand the understanding of autism through publications, workshops, research collaborations and corporate consultation.

Dori believes in the power of shared lived experience to foster connection and hope. She has championed the development of four autistic-led peer support groups: Good Company (formerly Asperfemme Toronto), a support group for adult women and nonbinary individuals with official/self-diagnosis on the Autism Spectrum, Chilling on the Spectrum, a young adult support and social group, Navigating Work a unique group for neurodivergent job seekers and Rainbow Spectrum Pride, a support group for autistic 2SLGBTQIA+ adults.

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Part 1: Profile of Autism Girls/Women

Part 2: The INVEST model (Identify Needs, Validate, Educate, Strengthen and Thrive)

Part 3: INVEST Model Case Studies

Supporting Sleep within the Autistic and Neurodivergent Communities

Part 1: Introduction

Filmed October 2021 – edited into 7 parts; total 184 minutes

A significant percentage of children and adults diagnosed with autism have great difficulty achieving healthy sleep patterns and this concern applies broadly across various neurodivergent children.  This often leads to the entire family suffering from chronic sleep deprivation with knock-on effect on family functioning, including employment and the ability of the child and their siblings to learn.  Too often families assume that there is no way to avoid this, that it is an unavoidable aspect of their child’s diagnosis. However, this is not the case, especially if the family can learn positive techniques when the child is still young.  

This presentation includes:

  • An introduction to the architecture of sleep and how it differs in the neurodiverse community. This includes a discussion of the reasons why autistic children and other neurodiverse individuals may be more likely to experience sleep difficulties. Understanding the underlying mechanism of sleep ensures a treatment plan that is realistic and addresses key problem areas.
  • A review of basic sleep problems (e.g., early waking, insomnia) and how analyzing the child’s behavior can support families to achieve healthy sleep with a positive, pro-active approach. Identifying the “why” behind a sleep problem is the foundation to developing a successful sleep plan. Every sleep plan should be individualized to a family’s cultural needs, current capacity and desired outcomes.
  • Through case studies, the process of assessment, plan development and support implementation will be described. 
  • A discussion of tangible takeaways to support healthy sleep for adults and children will be a major part of this presentation. Sleep is the foundation to overall health. Healthy sleep habits starting from the moment you wake up!

 

About the Presenters

Hilary McClinton, M. Ed., BCBA

Hilary McClinton has a Master’s in Special Education from the University of British Columbia and is a Board Certified Behavior Analyst. She lives in Maple Ridge, British Columbia and has supported the neurodivergent community for over 20 years, including supervision and mentorship of other practitioners in the behavior analytic community 

Hilary began specializing in sleep when she experienced sleep deprivation as a new parent and wanted to help other families find healthy sleep. For Hilary, creating a family-centered model of support has been a key piece to ensuring sleep plans are based on parent values and cultural considerations.  

Nicole Shallow., M.Ed., BCBA

Nicole Shallow has a Master’s in Special Education from the University of British Columbia and is a Board Certified Behavior Analyst. Nicole lives in Langley, British Columbia and has supported the neurodivergent community since 2012 in a variety of roles. Nicole’s commitment to helping others achieve better sleep comes from her own personal experience with sleep challenges. For Nicole, sleep support is built on the foundation of trust, transparency and collaboration.  

Both Hilary McClinton and Nicole Shallow work through Coastal Ridge Consulting, based in the Fraser Valley, and recognize the unceded territory of the Katzie and Kwantlen First Nations.

How to use chapters
New feature on Autism Videos @ ACT

Navigate videos with “chapters”

Chapters help you navigate through a video to find the information you’re looking for. Click the blue dots on the timeline to navigate chapters, or see all chapters through the chapters icon on the bottom right of each video.

Part 2: How we view sleep/Assessments

Part 3: Case Study 1: Toddler

Part 4: Case Study 2: Adolescent

Part 5: Case Study 3: Preschooler

Part 6: Case Study 4: A mix of everything

Part 7: Q and A

Use the chapters menu on the bottom right of the video to see the list of questions.

Improving Family Mealtimes

Filmed November 2021 – edited into 10 parts; total 170 minutes

Download the presentation handout (71 pages)

Many children and adolescents with autism and other neurodiverse conditions present significant concerns to carers who are trying to ensure proper levels of nutrition. This presentation begins with a discussion of selective eating and the factors that can affect a child’s eating. Our presenters then discuss how food preferences develop and the importance of children tasting a wide range of foods.

Step by step strategies for expanding a child’s diet are included, such as ways to increase the likelihood your child will take a bite, and how to respond when your child is refusing.

The presenters provide answers to questions commonly asked by parents during therapy, including:  
  • “What if I’ve tried rewards but my child still won’t take a bite?”
  • “Will my child always rely on rewards to eat new healthy foods?”
  • “What if it never gets easier to feed my child?”
  • “When do I honour my child’s dislike for a new food?”
  • “What if my child is sensitive to textures?”

About the Presenters

Lauren Binnendyk, PhD, BCBA-D

Lauren Binnendyk has a PhD in Special Education (concentration in autism and related disabilities) and is a Board Certified Behavior Analyst (BCBA-D) and has worked with children with developmental disabilities since 1997. Dr. Binnendyk is the Clinical Director at West Coast Feeding and Behaviour Specialists which she opened in 2010 to provide families with evidenced-based, family centred treatment of severe feeding disorders. Her practice has expanded to include a range of feeding concerns including, picky eating, bottle or milk dependence, chewing issues, and Avoidant/Restrictive Food Intake Disorder (ARFID).

Chantal Juilfs, M.Ed. BCBA, Behavior Analyst Consultant

Chantal received her Master’s degree in Special Education (concentration in developmental disabilities) from the University of British Columbia in 2017 and is a Board Certified Behaviour Analyst. In 2013, Chantal began specializing in feeding disorders under the supervision of Dr. Binnendyk at West Coast Feeding and Behaviour Specialists. Chantal has focussed her practice on working with individuals diagnosed with Avoidant Restrictive Food Intake Disorder, food selectivity, food refusal, and oral motor delays. Chantal understands the underlying fear involved with trying new foods for most of the individuals she works with and uses evidenced-based strategies to help them work through their fears to reach their goals.

How to use chapters

New feature on Autism Videos @ ACT

Navigate videos with “chapters”

Chapters help you navigate through a video to find the information you’re looking for. Click the blue dots on the timeline to navigate chapters, or see all chapters through the chapters icon on the bottom right of each video.

Part 1: Introduction

Part 2: Avoidance Restrictive Food Intake Disorder (ARFID)

Part 3: How do I Expand my Child’s Diet? – Taste Exposures

Part 4: Antecedent Strategies

Part 5: Consequence Strategies

Part 6: Case Study #1: A 5-Year-Old with Selectivity & Rigidity Feeding Issues

  • 5 years old at the start of intervention
  • Lives with his parents – with grandparents from after school until dinner time
  • Diagnosed with ASD
  • Feeding Issue: Selectivity, rigidity
  • Mealtimes: EL had a typical eating routine until he went with his dad to visit family in another province for a week. EL started to drop foods quickly until he had 4 in each food group, and many foods that were “hit/miss” and started only eating a few bites of the foods on his accepted food list.

Part 7: Case Study #2: A 20-Month-Old with Anemia & Selective Feeding Issues

  • 20 months old at the start of intervention
  • Lives at home with her parents
  • Background:
    • Born with a heart defect and underwent surgery after birth
    • Diagnosis of ASD
  • Feeding issues:
    • Has always been a picky eater
    • History of eating a food for 1‐2 weeks and then dropping it.
    • Anemic
  • Mealtimes:
    • Sits in a high chair or stands on a learning tower
    • Eats completely distracted
    • Breastfed throughout the day

Part 8: Case Study #3: A 3-Year-Old with Oral Motor Delays & Selectivity Feeding Issues

  • 3 years old at the start of intervention
  • Lives with his parents and two younger brothers
  • Diagnosed with ASD
  • Feeding Issue: Oral Motor Delays & Selectivity
    • Round 1: Purees
    • Round 2: Chewing Intervention
    • Round 3: Variety, Speed, and Chewing
  • Mealtimes: Ate mealtimes with family, but highly selective with new foods. If he accepted bites of non‐preferred foods, he would pack them in his cheek pocket for hours.

Part 9: Before You Start Tasting Sessions/Common Mistakes and Questions

Part 10: Q and A

Use the chapters menu on the bottom right of the video to see the list of questions.

00:00 – Different experiences for different children?

1:10 – Siblings for peer modeling?

2:01 – Who diagnosis ARFID?

2:31 – Dealing with older children?

3:58 – Hungry vs. Hangry?

5:00 – Grossed out by other people eating?

6:44 – Reinforcement and rewards?

8:32 – Pathological demand avoidance and food?

9:20 – Tolerance overall?

Supporting Early Social & Communication Development through Parent Coaching

Filmed April 2021 – edited into four parts; total 205 minutes

Download the presentation handout (pdf)

View project  overview infographic (pdf)

This presentation provides information about lessons learned from the Parent And Child Early Coaching project (PACE), conducted in collaboration with child development centres and Indigenous agencies in 16 BC communities from 2018-2020.

Included are discussions of:

  • The early signs of autism and the importance of early diagnosis.
  • Parent coaching and how it differs from other types of parent-child support for toddlers with social communication delays.
  • What the research tells us about the effectiveness of this approach.

The PACE Coaching research team describes, with presentations from coaches, trainers, parents and other community partners:

  • How the parent coaches involved in the project were trained and what the outcomes were.
  • A related project for Indigenous families: Parent-Child Connections.

Primary Presenters

Pat Mirenda, PhD, BCBA-D

Dr. Mirenda is Professor Emerita in the Department of Educational & Counseling Psychology and Special Education and past Director of the Centre for Interdisciplinary Research and Collaboration in Autism at UBC. She was the Principal Investigator in the PACE Coaching project.

Paola Colozzo, PhD, RSLP

Dr. Colozzo is an Associate Professor in the School of Audiology and Speech Sciences at UBC. A speech-language pathologist, she was Co-Investigator in the PACE Coaching project and was primarily responsible for assessment training, monitoring, scoring, and coding.

Veronica Smith, PhD

Dr. Smith is a Professor and Associate Chair in the Department of Educational Psychology at the University of Alberta. She was a Co-Investigator in the PACE Coaching project and was primarily responsible for assessing the factors that contributed to and affected implementation.

Wendy Ungar, PhD

Dr. Ungar is a Senior Scientist in Child Health Evaluative Sciences at The Hospital for Sick Children and a Professor in Health Policy, Management and Evaluation at the University of Toronto. She was a Co-Investigator in the PACE Coaching project and was primarily responsible for conducting a comparative cost analysis.

How to use chapters

New feature on Autism Videos @ ACT

Navigate videos with “chapters”

Chapters help you navigate through a video to find the information you’re looking for. Click the blue dots on the timeline to navigate chapters, or see all chapters through the chapters icon on the bottom right of each video.

Part 1: Background and Rationale

Topics Covered: 
  • What is social communication and why is it important?
  • What does it mean if social communication is delayed?
  • Baby Navigator Video https://www.youtube.com/watch?v=urJs4aw_O3w
  • How is social communication related to parent coaching?
  • How is parent coaching different than other types of parent-child support?

Part 2: PACE Coach Training

Topics Covered: 
  • Who we trained
  • How we trained
  • What our partners had to say

Part 3: Research Studies

Topics Covered: 
  • Randomized Controlled Trial
  • A sub-project for Indigenous families called Parent-Child Connections
  • Research Study Objectives

Part 4: Moving Forward

Topics Covered: 
  • Understanding the costs of coaching
  • Understanding the breadth of services families use
  • Implementation outcomes: what does it take?
  • Wrap up: final words from our partners

Parent Coach Training Opportunities (view pdf version here)

  • For training in the Early Start Denver Model:
    1. an Introductory workshop is required first.
    2. This is followed by an Advanced Workshop.
    3. Finally, this is followed by a Parent Coaching workshop
      All workshops are currently offered online.
  • Autism Navigator offers numerous online course for parents and for professionals. The JumpStart to Coaching in Everyday Activities course is focused on parent coaching.
  • Project ImPACT parent coach training is available online.
  • The Help is in Your Hands website includes a Provider Resources section. Among the many resources, you will find a series of four free recorded webinars on parent coaching and an online training syllabus.

Note: The mentoring and feedback provided through these online training programs varies widely. Some offer no mentorship at all and none of them are able to offer the frequency or duration of mentorship that was provided in the PACE Coaching project.

Turning the COVID-19 Crisis into Opportunity: Rethinking family supports to build resilience

Filmed April, 2021 – edited into six parts; total 127 minutes

This Focus on Research presentation examines the impact of COVID-19 on the quality of life and mental health of autistic children and their families, based on a survey of over 200 families. Researchers provide an assessment of the effectiveness of government supports during the initial lockdown period.

A panel discussion, featuring parents speaking to the experiences of families, then provide their recommendations for building capacity and enhancing resilience.

To view the preliminary research results see: The Impact of COVID-19 on Mental Health, Quality of Life, and Service and Support Needs in Families of Children with ASD.

Learning Objectives:

  • Understand the impact of COVID-19 on the quality of life and mental health of autistic children and their families.
  • Assess the effectiveness of government services and supports implemented during the lockdown period.
  • Identify strategies that parents can use to build resilience during this time.
  • Generate potential solutions and recommendations for government.

Presentation Handout

 

Presenter Bios

Grace Iarocci, PhD, Professor of Psychology, SFU

Grace Iarocci, PhD is a Professor of Psychology at Simon Fraser University, and the Director of the Autism and Developmental Disorders Lab. A registered psychologist, Dr. Iarocci works closely with government and community agencies in BC to disseminate research information on ASD and influence policy on ASD and other developmental disabilities. Grace has a particular interest in researching quality of life issues among families living with ASD. A previous presentation by Dr. Iarocci on this topic can be viewed on ACT’s website.

Vanessa Fong, PhD Candidate, SFU

Vanessa Fong is a PhD student in the Developmental Psychology program at SFU. Her research focuses on examining quality of life in culturally diverse families raising autistic children from a patient-oriented framework. Throughout her graduate studies she has become deeply committed to advancing community engaged research in the field of neurodevelopmental disabilities. She hopes that bridging the gap between the scientific and autism community through engagement and collaboration will help prioritize research that is meaningful to those who are affected. The title of her PhD thesis is: A community engaged approach to examining quality of life and service navigation in Korean families raising autistic children.

Moderator

Professor Anthony Bailey, BSc, MBBS, DCH, MRCPsych, FRCPC

Professor Anthony Bailey is Institute of Mental Health Chair and Professor and Chair of Child and Adolescent Psychiatry, Department of Psychiatry, Faculty of Medicine, University of British Columbia. Dr. Bailey’s clinical work focuses on teenagers and able adults with ASD and he is recognized across Canada for his depth of understanding of how public policy effects the lives of those with neuro-developmental conditions.

Part 1: Study Background

Topics Covered: 
  • Why families of autistic children may be uniquely impacted
  • Research before the pandemic
  • Study Context
  • Research Questions and Methods

Part 2: Impact on the Child and Caregiver

Topics Covered: 
  • What is the impact of COVID-19 on the child, caregiver and family?
  • Relationship between child and caregiver anxiety

Part 3: Impact on Family

Topics Covered: 
  • How does family quality of life differ before and during COVID-19 lockdown?
  • Beach Centre Family Quality of Life Scale

Part 4: Service and Support Needs

Topics Covered: 
  • What are families’ service and support needs?
  • Government, educational supports

Part 5: Characteristics Linked to Improved Family Quality of Life

Topics Covered: 
  • What characteristics of the family are linked to improved family quality of life?
  • Resilience

Part 6: Panel Discussion

Professor Anthony Bailey facilitates a panel of parents engaged in community advocacy, discussing their perspective on the impact of the pandemic on families of children across neurodevelopmental conditions, in particular, autism.

 

Panelists

Lori Gauthier is an indigenous mother of four sons with autism. Two years ago, she returned with her children to their unceded ancestral territory, (Nak’azdli Whut’en), near the village of Fort St James in Northern BC. Currently she works as a Maternal Child Health Worker and Advocate, providing health and social support to young indigenous families in Fort St James and surrounding First Nations. For the past 20 years Lori has worked throughout the province with young children and their families in both rural and urban communities. Her personal and professional experience supporting marginalized families and youth with diverse needs has given her a unique outlook on various issues and barriers facing families in rural areas.

Carey Henry lives in Cranbrook in the Interior of BC. She has two neurodiverse boys – the eldest is on the autism spectrum. Carey grew up in South Africa and moved to Canada as a young adult. She is a champion for neurodiverse children and their families. She is aware of the supports and resources required to make an autism family thrive. She is so grateful for the resources available and is passionate about advocacy and education to make life better for her family, and other neurodiverse children and their families.

Bosang LeeBo Sang Lee has been Executive Director of Here and Now Community Society since 2014, It is a non-profit society helping individuals with disabilities and their families that he and other families founded in 2012 to help Korean-speaking families. Bo Sang has two children, one of whom has autism and lives in the Lower Mainland. He has served as a board member of PLAN and the Family Support Institute.

Deborah Pugh founded ACT – Autism Community Training to provide evidence-based information and training to families across the province. Her experience of having returned to Canada in 1994 with her three-year old son, later diagnosed with autism, was the catalyst for 25 years of thinking about how communities and government could effectively support families across developmental disabilities, regardless of their cultural or linguistic background or where they live in BC.

Topics Covered: 

00:00 – General commentary on presentation and COVID-19 experiences

12:35 – Discussion on Ministry for Children and Family Development Autism Portal

15:33 – Accessibility of the survey

17:26 – Resilient families

18:29 – How were general relationships (neighbourhood, communities) supportive?

20:05 – How were diagnostic services in British Columbia affected by COVID-19?

25:55 – What is the top priority for the government at the moment?

36:56 – Is the government trying to do too much with too little resources and expertise?

42:56 – Are there any methods of support that were implemented during COVID-19 that will continue on?

44:59 – Has this experience been similar across the country?