Neurodivergence & Autism
This page is designed to provide resources for adults in Ontario who think that they may be neurodivergent, and want to understand more on what that means. This page also provides resources that could be helpful for folks navigating social services, and are looking for resources
This page has been created by Brooke Enright, check them out!
What is Autism?
ASD is neurobiological. It is influenced by both genetic and environmental factors affecting the developing brain. Ongoing research continues to deepen our understanding of potential etiologic mechanisms in ASD, but currently no single unifying cause has been elucidated. (Hodges, Fealko, & Soares 2020)
Who is Neurodivergent?
What is Ableism?
Ableism concerning autism can manifest in several ways such as:
Assuming Uniformity: Expecting all autistic individuals to behave or experience the world in the same way. This can lead to misunderstandings or overlooking the diverse experiences within the autism spectrum.
Disregarding Communication Differences: Dismissing or undervaluing non-verbal or atypical forms of communication, which can prevent individuals from expressing themselves effectively.
Social Exclusion: Unintentionally excluding autistic individuals from social activities or conversations due to misunderstanding social cues or differences in communication.
Overwhelming Sensory Environments: Ignoring or neglecting the sensory needs of autistic individuals, exposing them to overwhelming or distressing environments without accommodation.
Underestimating Abilities Assuming that someone's autism limits their capabilities without recognizing their unique skills and talents.
Lack of Accessibility Failing to provide accessible environments or resources, such as not offering alternative communication methods or not accommodating sensory sensitivities.
Bullying and Stigmatization Subjecting individuals to bullying, mockery, or stigmatization due to their differences, leading to social isolation and emotional distress.
Ableism is a form of discrimination or prejudice against individuals with disabilities. It involves treating people unfairly or excluding them from opportunities based on their physical, mental, or developmental differences. Ableism can manifest in various ways, such as societal attitudes, inaccessible infrastructure, or systemic barriers that limit the full participation of individuals with disabilities in social, educational, or work settings
Breaking Down How Neurodivergence Effects Us
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The Neurodivergent Wheel is a visual representation used to illustrate the various interconnected aspects of neurodiversity. At its center, the core element is the recognition of neurodiversity itself, which encompasses a broad range of cognitive and neurological differences. Surrounding this core, the wheel highlights key aspects and support services often associated with neurodiversity, including Recreation Therapy, Dialectical Behavior Therapy (DBT), and Sensory Integration Therapy.
Proprioception
Proprioception is the sense that lets us perceive the location, movement, and action of parts of the body.
(Kevin E. Wilk, 2012)
Examples:
- Walking on tip toes
- Spinning
- Dancing
- Poor Coordinated
- Bump into other people or objects.
Interoception
Interoception is a sense that helps you understand and feel what’s going on inside your body.
(Amanda Morin, 2023)
Examples:
- Internal Sense of Thirst or Hunger
- Feeling Full
- Internal Cues for using the bathroom
Autism Myths
"Autism is caused by bad parenting"
This myth suggests that cold or neglectful parenting causes autism, which has been widely debunked. Autism is a neurodevelopmental condition with complex genetic and environmental factors.
"People with autism lack empathy"
This is false. Individuals with autism might express empathy differently, but they can be highly empathetic.
"All autistic individuals are the same"
Autism is a spectrum, and each person's experience is unique. There's a wide range of strengths, challenges, and characteristics within the spectrum.
"Autism Speaks is a great resource"
Autism Speaks uses its platform and advertising budget to portray autism and autistic people as mysterious and frightening. Their fundraising tactics increase stigma and create barriers to the inclusion of autistic people in our communities.
"Autism is more common in boys"
Historically, more boys have been diagnosed, but this may be due to differences in presentation and diagnostic biases. Autism occurs in all genders.
"Autism only affects children"
Autism is a lifelong condition. While early intervention is beneficial, autistic individuals continue to have unique needs and experiences as they grow into adulthood.
"Autism can be cured"
Autism is not a disease, so there's no "cure." Implying that there is something to b e cured can be considered very insulting for some Autistic Folks. However, various interventions and therapies can help individuals manage symptoms and improve their quality of life.
"All Autistic people are intellectually disabled"
While some autistic individuals might have intellectual disabilities, many have average or above-average intelligence.
"The puzzle peice is a universally accepted symbol of Autism"
To autistic people, the puzzle piece represents negativity about autism, not a positive perspective of autism. A second issue for autistic people, is the puzzle piece also represents viewing us as 'puzzling' or a 'mystery'. Often terms used in the past referring to autism.
Biopsychosocial Model
The BPS model helps all of us look at life from a unique lens from a social, biological, psychological and normative environment that neurodiverse individuals find themselves in at work, home, relationships, and many aspects of life.
Activity
Look at the three circles and the categories, and consider your life aspects, what sections do you feel you have good supports in, and which do you feel you need more resources?
Example:
Category: Psychological, Sub-Topic: Coping Skills.
Supports: Crocheting, Deep Breathing Skills, Ground Techniques
Needs: Resources in times of extreme emotional distress, more distress tolerance skills
Window of Tolerance
"Developed by Dan Siegel, a Clinical Professor of Psychiatry, the Window of Tolerance describes the best state of 'arousal' or stimulation in which we are able to function and thrive in everyday life. When we exist within this window, we are able to learn effectively, play, and relate well to ourselves and others."
(Jersey Psychology and Wellbeing Service, 2020)
Activity
This free downloadable resource is a worksheet to help folks interact and be aware of their windows of tolerance.
Setting Boundaries
"If youʼre neurodivergent you know that healthy boundaries are far from easy to navigate. And no-itʼs not because somethingʼs wrong with you! Itʼs due to a huge variety of societal and developmental reasons. Everything from how we experience emotions as Neurodivergents to traumatic family lives to the Double Empathy Problem stands in our way when it comes to developing strong boundaries.But donʼt worry, that doesnʼt mean you canʼt have strong boundaries! It just means you may need a guide thatʼs suited to your experience as a Neurodivergent."
(MB, My Soul Balm 2022)
This free downloadable resource is a guidebook to help folks interact and be aware of their boundary setting
Late-Diagnosed Neurodivergent Folks
Why there seems to be disparities in diagnosis's
Generational Differences
Gender Differences
Different generations experience Neurodiveristy in varied ways based on how much society knew and understood about neurodiversity at the time. Older generations often had less awareness and support, while younger ones might have more resources and understanding available to them.
Racial, Ethnic, and Cultural Differences
Different racial and cultural backgrounds can affect how people are diagnosed as neurodivergent. Some communities might have less access to diagnosis/resources or feel ashamed to seek help because of cultural beliefs. The way symptoms show up and the support available can also vary a lot.
Racism within research can create barriers for individuals from diverse racial and cultural backgrounds to access accurate diagnoses and appropriate support for their neurodivergent traits. This can further limit access to resources and contribute to the challenges these communities face in seeking help and support.
Girls, women, and gender diverse folx, who are neurodivergent might not have been recognized as much in the past because their behaviors may not match the typical idea of what being neurodivergent looks like. They might have hidden their differences to fit in, making it harder to see their needs. This could lead to mental health issues and challenges in getting the right help.
Masking & Trauma
Neurodivergent individuals might learn to mask or hide their true selves to fit in socially or cope with environments that don't accommodate their differences. This can involve suppressing their natural behaviors, which can be exhausting and create a disconnect between their true identity and how they present themselves to the world. Masking and facing environments that don't support their needs can lead to trauma. Constantly trying to fit in or being misunderstood can cause stress, anxiety, and even mental health issues, impacting their emotional well-being.
Intersectionality
Intersectionalitly and Autism ?
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Race and Ethnicity: Different racial and ethnic communities may have varied access to resources, diagnosis, and cultural attitudes toward neurodiversity, influencing the recognition and support for autistic traits.
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Gender: Autism presents differently in Gender Diverse folks, Men and Women, impacting the way symptoms are perceived, leading to potential underdiagnosis or misdiagnosis in females and gender diverse folks
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Sexuality: Sexual orientation might affect social interactions and the experience of acceptance or exclusion within the autistic community and broader society.
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Class: Socioeconomic status can impact access to healthcare, therapies, and educational resources, affecting the support available for autistic individuals.
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Language: Language barriers may hinder access to information, diagnosis, and support for autistic individuals and their families.
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Religion: Cultural and religious beliefs can influence the perception of autism and the approach to seeking diagnosis and support.
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Ability: Co-occurring abilities or disabilities can impact the overall experience of autism and the available support needed.
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Mental Health: Mental health challenges, often associated with autism, can vary in severity and impact the individual experience.
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Age: The age at which someone is diagnosed can significantly influence their access to resources and support.
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Education: The quality and type of education available can impact the understanding and accommodation of autistic traits.
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Perceived Attractiveness: Social biases related to conventional or percevied attractiveness can affect how individuals are perceived, potentially impacting social interactions and acceptance.
Each of these factors can shape and modify the experience of autism, creating a unique and varied journey for each individual based on their intersectionality. Understanding these influences is crucial in providing tailored support and accommodations for neurodivergent individuals.
Race and Autism
1 in 8
This is DOUBLE that then the rest of the population
Indigenous children have a disabilitly
(Di Pietro, & Illes 2014)
Check out this video! "The Gift of Being Different, a short documentary, follows , Grant Bruno as he navigates the world of autism. Grant is a parent to Autistic children and a PhD researcher exploring autism in First Nations communities. Grant is a registered member of nipsihkipahk (Samson Cree Nation), one of the reserves that makes up Maskwacis, Alberta. Through the film we learn his community views autism as a gift."
"There is a debate in autism research about whether race should be considered in evaluating how well therapies work. In 2016, Jason Travers and his colleagues analyzed 408 peer-reviewed, published studies of evidence-based autism treatments. Only 73 of them, or 17.9 percent, reported the race, ethnicity or nationality of participants. Of the nearly 2,500 participants in the 73 studies, fewer than one in five reported their race — and 63.5 percent of those were white".
CATINA BURKETT, 2020
Check out these resources
Black Neurodiversity: The Intersectionality and Representation of Neurodivergence in the Community
Neurodiversity: What is it and what does it look like across races?
Where is the research into Black autism and ADHD?
No Time To Confront Racism In Neurodiversity
Charting Relations between Intersectionality Theory and the Neurodiversity Paradigm
Is Neurodiversity the new black?
YOUTUBE
What It's Like to Be ADHD and Black
Young, Gifted & Black With Autism | LaChan Hannon | TEDxCooperRiverWomen
Children of color with autism face disparities of care and isolation
Being Neurodivergent and Black - Vlog
Erin Manning on Neurodiversity, Black Life and the University as We Know It
Q&A's
How do I advocate for myself?
Self advocation can be challenging, especially knowing where to start. Below are a few ways that you can advocate for yourself.
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Self-awareness: Understand your neurodivergent condition, its impacts, and your strengths.
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Know your rights: Learn about Canadian laws like the Accessibility for Ontarians with Disabilities Act (AODA) and the Canadian Human Rights Act to know your rights.
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Identify your needs: Express what you require in education, employment, and social situations, like accommodations, flexible schedules, or sensory considerations.
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Effective communication: Develop clear communication skills to express your needs and challenges using "I" statements. Figure out what feels good to you. The debate between person-centered language or identity-centered languge has been
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Support network: Connect with fellow neurodivergent individuals and supportive friends, family, or professionals for advice and emotional support. You are not alone in this, we all struggle with so many barriers, and sometimes that community shared struggle can be empowering.
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Document needs: Keep records and relevant documentation, such as medical evaluations, therapy notes, accommodation plans, to support your requests. Speak with your healthcare providers on what documentation they have and what language they are using. You are allowed to have your legal documentation reflect you in a way that doesn't feel pathologizing.
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Do your research. This is a peer reviewed journal article that talks about, stigma, stereotypes and misinformation of Autism in the healthcare field, and in general.
I'm a student, what kind of accommodations can I ask for?
According to Inclusion Movements & Classrooms, examples of modifications and accommodations that could be made for students are:
Giving students additional time on tests, allowing students to use their notes during tests, providing word banks on tests, providing copies of lesson notes, removing difficult test questions*, highlighting key concepts.
*This could be questions worded in double negatives, or "trick" questions, or questions that may infringe on persons ability to understand the question, opposed to testing their knowledge of the course content.
Source: Teachings in Education - Video
(Please note the source is designed for younger children, the answer has been adapted for an older audience)
I think I'm neurodivergent but I don't want a diangosis
There are many reasons why some individuals might choose not to pursue a formal diagnosis:
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Lack of Culturally Sensitive Assessment Tools: Many assessment tools might not be culturally sensitive or might not adequately consider diverse cultural backgrounds, leading to potential misdiagnosis or overlooking certain aspects of an individual's experience.
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Pathologizing Labels: Some people fear that receiving a diagnosis might result in being unfairly labeled or stigmatized, and that the diagnostic label might overshadow their unique identity or strengths.
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Potential Misuse or Discrimination: There's a concern that a diagnosis could be used against an individual, leading to discrimination in various aspects of life, such as employment, education, or social interactions.
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Financial Constraints: Seeking a diagnosis often involves various expenses, including the cost of assessments, consultations, and potentially ongoing therapies or treatments. For some, the financial burden associated with the diagnostic process might be a barrier, especially if the resources for such assessments are limited or not covered by insurance.
These concerns are valid and highlight the need for more culturally sensitive assessments, awareness of the impact of labels, and the importance of ensuring that diagnoses are used to support individuals rather than limit them. The decision to pursue a diagnosis is deeply personal and depends on an individual's unique circumstances and needs. Whether or not you pursue a diagnosis, you are still valid!
Resources
Supporting Neurodivergent People in Personal Finance (Information)
Managing finances can be one of the biggest challenges for neurodiverse people.
MoneyGeek
Government Funding for Adults
- Ontario Disability Support Program (ODSP)
- Developmental Services Ontario (DSO) & Passport Funding
- Disability Tax Credit (DTC)
- Registered Disability Savings Plan (RDSP)
- Henson Trusts
A deep dive into the spectrum of Autistic experience and the phenomenon of masked Autism, giving individuals the tools to safely uncover their true selves while broadening society’s narrow understanding of neurodiversity.
Autism Ontario
Quizzes
Suspect you may be neurodivergent? There are several different websites that have online Neurodiversity tests. These are NOT official diagnosis's, and we encourage you to speak to a trusted healthcare professional. Self Diagnosis's are also valid, please see the section below regarding self diagnosis's
Questions:80
Duration:10–30 minutes
Type: Autism screening tool
Authors: Riva Ariella Ritvo et al.
Website: Embrace Autism
Questions: 50
Duration: 5-10 minutes
Type: Autism screening tool
Authors: Simon Baron-Cohen
Website: Embrace Autism
Duration: 10+ minutes
Type: Dyslexia screening tool
Authors: Unknown
Website: Exceptional Individuals
Questions: 25
Duration: 5-10 minutes
Type: Autism screening tool
Authors: Laura Hull et al.
Website: Embrace Autism
Duration: 10+ minutes
Type: ADHD screening tool
Authors: Ronald C. Kessler & Berk Ustun et al.
Website: Embrace Autism
Word Bank
Echolalia:
"The repetition of verbal language in an echoic manner, looping words and phrases around in a recurring way (Arora, 2012). For example, an inclusive classroom teacher says, “pretty flower,” and the stu-dent with ASD repeats, “pretty flower,” perhaps multiple times." (Hall, Maich, Alves & Penney 2020)
Alexithymia
Alexithymia is a psychological condition characterized by difficulties in identifying, understanding, and expressing emotions. People with alexithymia might struggle to recognize their own emotions and have trouble describing or verbalizing their feelings to others. This can lead to challenges in forming and maintaining relationships due to the difficulty in understanding emotional cues or responding empathetically to others. It's often associated with other conditions such as autism spectrum disorders and PTSD.
Meltdown
A meltdown is an intense reaction or response to overwhelming sensory, emotional, or environmental stimuli. It's often observed in individuals with autism or sensory processing difficulties, but it can also occur in various other contexts.
During a meltdown, an individual might feel completely overwhelmed and unable to manage their emotions or reactions. It can manifest as a loss of control, leading to heightened emotional distress, sometimes resulting in crying, shouting, or physical outbursts. This reaction is not a deliberate behavior but a response to feeling overloaded and unable to cope with the situation.
Shutdown
A shutdown is a response or coping mechanism often observed in individuals with autism or sensory processing differences. It involves a withdrawal or disengagement from the surrounding environment or social interactions. During a shutdown, an individual might retreat into themselves, becoming unresponsive or appearing disconnected from their surroundings.
This response can manifest as a result of overwhelming sensory stimuli, emotional stress, or a need to self-regulate in challenging situations. The individual might appear distant, uncommunicative, or show signs of disengagement, as if they are mentally shutting down to cope with the overwhelming factors.
Demand Avoidance
Demand avoidance is a term often used in the context of Pathological Demand Avoidance (PDA), a profile within the autism spectrum. It refers to an individual's strong resistance or avoidance of everyday demands, requests, or expectations. People with demand avoidance might react strongly or actively resist tasks, instructions, or requests, even those that others might consider routine or simple.
This resistance can be driven by an intense need for control, fear of failure, anxiety, or a need to avoid feeling overwhelmed. The individual might use various strategies to resist or avoid demands, which can include negotiation, distraction, procrastination, or even exhibiting challenging or oppositional behavior.
References
1
Article
DeWitt, S. J., Ketcherside, A., McQueeny, T. M., Dunlop, J. P., & Filbey, F. M. (2015). The hyper-sentient addict: an exteroception model of addiction. The American journal of drug and alcohol abuse, 41(5), 374–381. https://doi.org/10.3109/00952990.2015.1049701
2
Website
Are you an emotionally intense person?. Eggshell Therapy and Coaching. (n.d.). https://eggshelltherapy.com/emotional-intensity/
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Article
Wilk , K. E. (n.d.). Proprioception. Proprioception - an overview | ScienceDirect Topics. https://www.sciencedirect.com/topics/neuroscience/proprioception
4
Article
DeWitt, S. J., Ketcherside, A., McQueeny, T. M., Dunlop, J. P., & Filbey, F. M. (2015). The hyper-sentient addict: an exteroception model of addiction. The American journal of drug and alcohol abuse, 41(5), 374–381. https://doi.org/10.3109/00952990.2015.1049701
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Stimming: What is it and does it matter?. CHOP Research Institute. (2020). https://www.research.chop.edu/car-autism-roadmap/stimming-what-is-it-and-does-it-matter#:~:text=%22%20Stimming%20%2C%22%20also%20known%20as,spectrum%20engage%20in%20routine%20stimming%20.
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Jordan, C. J., & Caldwell-Harris, C. L. (2012). Understanding differences in neurotypical and autism spectrum special interests through Internet forums. Intellectual and developmental disabilities, 50(5), 391–402. https://doi.org/10.1352/1934-9556-50.5.391
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Executive Function & Self-regulation. Center on the Developing Child at Harvard University. (2020, March 24). https://developingchild.harvard.edu/science/key-concepts/executive-function/
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U.S. Department of Health and Human Services. (n.d.). Autism spectrum disorder: Communication problems in children. National Institute of Deafness and Other Communication Disorders. https://www.nidcd.nih.gov/health/autism-spectrum-disorder-communication-problems-children#:~:text=Many%20have%20problems%20with%20the,especially%20people%20their%20own%20age.
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Ateş, B. (n.d.). The Autism Wheel | Autism Expert Advices. Good Autism School . https://goodautismschool.com/the-autism-wheel/
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Samonte, A. (n.d.). Understanding the essence of intersectionality - the wright center. The Wright Center . https://thewrightcenter.org/understanding-the-essence-of-intersectionality/
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Bradshaw, P., Pickett, C., van Driel, M. L., Brooker, K., & Urbanowicz, A. (2021). 'Autistic' or
'with autism'? Why the way general practitioners view and talk about autism matters. Australian journal of general practice, 50(3), 104–108. https://doi.org/10.31128/AJGP-11-20-5721
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Baker, A.E.Z., Lane, A., Angley, M.T. (2008) The Relationship Between Sensory
Processing Patterns and Behavioural Responsiveness in Autistic Disorder: A Pilot Study. J Autism Dev Disord 38, 867–875. https://doi.org/10.1007/s10803-007-0459-0
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Infographic
Before you donate to autism speaks, consider the facts. (n.d.). https://autisticadvocacy.org/wp-content/uploads/2017/04/AutismSpeaksFlyer2020.pdf