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Autism Mental Health Literacy Project (AM-HeLP)

Mental Health Literacy Guide for Autism

We created the Mental Health Literacy Guide for Autism to increase awareness and share knowledge around issues related to Autistic mental health. This guide is meant to be read by everyone, but most importantly by Autistic adults, family members, professionals, policy-makers and leaders.

We began writing the guide in September 2019 with 29 Autistic adults and family members from across Canada. Throughout the project, advisers were consulted on the guide’s content, format, and overall design. Each section was reviewed and discussed via monthly group video meetings and weekly communications. The materials we produced were based on our Autistic advisers’ lived experiences and on understanding of what was important to them. The process of listening and learning from our advisers was crucial. There was content within sections that would not have been included if not for adviser input, and we endeavoured to link this with first-person accounts of Autistic experiences.

Our goal for this guide is to provide knowledge about the different factors that can impact Autistic mental health. The guide highlights how individual experiences and contexts play roles in the mental health of Autistic adults and how societal acceptance and appreciation of autism is critical for better support and well-being.

In collaboration with Spectrum Productions, we also developed a complimentary 6-video animated series based on sections of the guide. Scroll down to watch them all.

"Knowing more, helps more."

Authors and Citation

The Mental Health Literacy Guide for Autism was produced by the Autism Mental Health Literacy Project (AM-HeLP) Group:

  • Co-Principal Investigators: Drs. Jonathan Weiss & Yona Lunsky
  • Research Coordinator: Paula Tablon Modica
  • Research Associate: Dr. Jonathan Leef
  • Advisers: Aaron Bouma, Alex Echakowitz, Elsbeth Dodman, Patricia D. George, Lianne Goldsmith, Lindamarie Gossen, Tom Jackman, Pari Johnston, Kate Keto, ShanEda Lumb, Dr. Kimberly Maich, Tim Martens, Amond McKenna, Lachina Tycho Mckenzie, Nathan Moore, Iris Parker, Marie Porter, Rosanne Purnwasie, M. S. M. Kennith James Skwleqs Robertson, Gizzelle Rocha, Maxine Share, Todd Simkover, Louise Tardif, Sue Walters, Courtney Weaver, Margaux Wosk, and Shirley-Ann Yamashita
  • Note: 2 advisers asked to be anonymous

Suggested guide citation: Autism Mental Health Literacy Project (AM-HeLP) Group. (2021). Mental Health Literacy Guide for Autism. Retrieved from: https://www.yorku.ca/health/lab/ddmh/am-help/

Cover Art: Love Grows - Copyright © 2020 by Margaux Wosk, Retrophiliac. All rights reserved.

Front Cover of the Mental Health Literacy Guide with a pink heart with 2 green leaves underneath, on top of a colourful rainbow.

Behind the heart image are solid filled rays.

*The French Version of the guide is under preparation.

Guide Sections

You can access each section separately below.

  • This section begins with a reflection on the process of writing the guide, and points to consider before delving into guide content.
  • The introduction of the guide explains its purpose and goals, explains our choice of language, and outlines the guide structure and layout.
  • Mental health literacy means knowing about mental health and having skills and support to apply that knowledge. 
  • Improving mental health literacy can decrease stigma and make it easier to find helpful supports. 
  • Acknowledging and understanding the different ways Autistic people experience mental health can be empowering.
  • Mental health is the ability to feel, think and act in ways that help us enjoy life and deal with difficulties.
  • Mental health problems can occur when a person experiences a lot of distress.
  • There are many reasons why a person can experience mental distress. Often, it is related to events in their environment and/or how the person understands them.
  • Understanding is unique and can affect well-being.
  • A person can experience the positive and negative sides to mental health at the same time.
  • Autism is not a mental health problem.
  • Not all Autistic people are the same.
  • Autistic people have a wide range of abilities and differences.
  • Gender, racial, cultural and socioeconomic identities of Autistic people affect their experiences and their life course.
  • This diversity needs to be factored into care and support.
  • Mental health problems can look different in Autistic people.
  • Growing up in a society that is not understanding, accepting or supportive can affect how Autistic people see themselves, others and their lives.
  • Providing the wrong kind of support can affect how Autistic people feel about themselves and can contribute to mental health challenges.
  • Autistic people experience positive mental health.
  • Social, psychological and biological factors play an important role in mental health.
  • This section describes common mental health problems experienced by Autistic people.
  • We identify common "body", "doing" and "thinking" signs of mental health problems.
  • For Autistic people, the combination of stressors and mental health problems can lead to meltdowns, shutdowns, or burnout.
  • Well-being has many different aspects and is influenced by internal, external and social factors.
  • Self-care means making it a priority to do things that a person loves to do that make them feel better.
  • Community care involves taking care of the needs of each other.
  • We can learn self-care strategies to help us when we are feeling stressed or worn down by demands.
  • Self-care planning involves building physical and emotional strategies into daily living to help deal with life challenges.
  • This section gives brief information about where formal supports can be accessed and what they look like.
  • There are different types of supports for Autistic mental health, including but not limited to psychosocial (supports involving others) and medication.
  • Mental health supports can be found in different systems of care, such as agencies and hospitals, or from professionals (e.g., psychologists, social workers or psychiatrists).
  • There are many types of formal supports, and understanding some of the differences can make it easier to know which support a person may find helpful.
  • Medication can be helpful, but it is important to understand the potential side-effects of a medication when making a decision.
  • Autistic people are at an increased risk of mental health problems, self-injury and suicide.
  • Crisis, emergencies and times of uncertainty are experienced differently by each person, and the mental health effects of these events can be long-lasting.
  • During a crisis, it is important to ask, “Whose crisis is it?”
  • Having a plan of action for times of crisis and uncertainty may help to reduce anxiety associated with the event.
  • Creating Mental Health Safety Plans and Crisis Cards can help Autistic people during a crisis.
  • This section highlights advice and tips from our Autistic advisers for family caregivers on how to help them maintain their well-being.
  • This section also highlights what Autistic people would like their caregivers to know.
  • Autistic caregivers experience parenting differently than non-Autistic caregivers.

You will find a list of Autistic-led organizations, online and print materials related to Autistic mental health, and crisis lines across Canada.


Mental Health Literacy Guide for Autism Animated Video Series

Using the information from our Mental Health Literacy Guide for Autism, the AM-HeLP animated video series is about different aspects of autism mental health literacy. The video format and images were developed in consultation and collaboration with our advisers. Several AM-HeLP advisers also participated in the recording process.

Credits

  • Videos were produced by: Spectrum Productions
  • Voiceovers by: Riley Goldsmith and members of the AM-HeLP Group
  • Scripts Written by: Paula Tablon Modica, Dr. Yona Lunsky, and Dr. Jonathan Weiss

Understanding Mental Health Literacy

We define “mental health literacy” and how it can be helpful.

Introduction to Mental Health

We provide an introduction to mental health and how it is experienced differently by everyone.

Autism and Diversity

We discuss how diverse autism is.

Understanding Autistic Mental Health

We discuss the social, psychological and biological factors that play important roles in Autistic mental health.

Understanding Autistic Well-being

We discuss what well-being, self-care and community care means and what they can look like for Autistic people.

Understanding Supports for Autistic Mental Health

We discuss helpful supports for Autistic people and the importance of Autistic acceptance.

Want to know more about the project?

For more information, please feel free to contact Paula Tablon Modica (tablonp@yorku.ca), or Dr. Jonathan Weiss (jonweiss@yorku.ca).

AM-HeLP guide in the Media

This project was supported by the Public Health Agency of Canada.