avatarJillian Enright

Summary

The web content provides an in-depth exploration of common questions surrounding autism, addressing its nature as a disability and neurodevelopmental condition, genetic factors, prevalence in Canada, diagnostic processes, and societal attitudes.

Abstract

The article "Autism FAQs" delves into the complexities of autism, clarifying that while it is not a mental illness, it is a neurodevelopmental disorder that affects brain development differently than in neurotypical individuals. It discusses the high heritability of autism, suggesting a strong genetic component, and notes the estimated prevalence of autism in Canada, while acknowledging that many cases may go undiagnosed or unreported. The piece emphasizes that autism can be considered a disability due to societal structures that fail to accommodate neurodivergent needs, rather than inherently being one. It also outlines the challenges and biases in the diagnostic process, affirming the validity of self-diagnosis for those who identify with the Autistic experience but face barriers to formal assessment. The author advocates for a nuanced understanding of support needs, rejecting the "high" and "low" functioning labels in favor of context-specific descriptions of abilities and challenges.

Opinions

  • Autism is seen as a disability primarily due to societal barriers and a lack of accommodation for neurodivergent individuals.
  • The author criticizes the one-size-fits-all approach of public education systems and workplaces, which often fail to meet the needs of neurodivergent people.
  • There is a call for greater recognition of the benefits of hiring neurodivergent employees and for creating more inclusive environments.
  • The article challenges the oversimplification of autism through functioning labels, advocating for a more individualized and respectful approach to describing support needs.
  • The author supports the validity of self-diagnosis, given the significant barriers to formal diagnosis, including clinician bias, stigma, and financial costs.
  • The piece suggests that a person's functioning can vary greatly depending on context, support, and other factors, rather than being static.
  • The author promotes learning from the experiences of actually autistic people and encourages understanding autism through the lens of the neurodiversity paradigm.

Autism FAQs

Answering the most common questions I receive about Autism

Image created by author

Is Autism a Disability?

Yes and no. It depends.

Okay, yes — but not in the way you’d think.

Some people consider their neurotype a disability in itself because their own Autistic traits cause them distress — for example, sensory issues related to one’s own body.

Many consider autism a disability simply because the world is not centred around the needs of Autistics, it’s centred around the needs of the Neurotypical (NT) majority.

In that context, Autistic people are disabled by society’s lack of understanding, accommodation, and acceptance of Autistic differences.

Social barriers

Social barriers to inclusion may consist of public spaces where really loud music is played, or those which have really bright lights. Most public spaces are set up without considering the sensory needs of different members of the community.

This most definitely includes the public education system, which is designed to serve the learning needs of the majority of students (and even that is arguable, but I digress).

Most schools are poorly set up to meet the needs of neurodivergent and disabled learners, and most training programs for teachers have woefully inadequate coverage of disabilities, autism, and other neurodevelopmental differences.

This also incudes most employers and large companies, which do not consider the benefits of hiring neurodivergent and disabled employees. Most do not make their workplaces autism-friendly, nor do they consider the various needs of disabled and neurodivergent employees.

Is Autism a Mental Illness?

No.

Autism is a neurodevelopmental disorder, meaning an Autistic brain develops differently, and differs in significant ways, from an NT brain.

However, Autism is very frequently co-occurring with mental health issues such as anxiety, depression, and bipolar disorder.

What causes autism?

Sex.

Seriously.

Well, unprotected heterosexual sex, to be specific.

Making babies causes autism because it runs in families, which brings me to the next most common question…

Is autism genetic?

Yes. Highly.

Autism has an estimated heritability rate as high as 90%. This means 90% of the variation in genetics — in this case, the genetic variation of Autistic family members — can be attributed to genetic causes.

What percentage of Canadians are Autistic?

Good question.

The real answer is: we don’t actually know.

According to Statistics Canada, approximately 2% of Canadians are Autistic.

However, this statistic from 2019 only represents Canadians who are formally diagnosed and counted in our census. A 2020 public health survey estimates the rates to be closer to 3%.

For a myriad complex reasons, there are many people who are self-identified, misdiagnosed, or undiagnosed.

Some experts suspect the rate may be as high as 20%, but it’s very difficult to get an accurate picture because of the barriers to diagnosis, as well as the significant overlap between various neurotypes and co-occurring conditions.

How do I know if I’m Autistic?

To be formally diagnosed with autism, one has to undergo a psychological assessment from a trained professional, such as a psychologist or psychiatrist.

The professional should have specific training in administering the assessments and should have an up-to-date understanding of what autism really looks like, and not a narrowly-defined, stereotypical view of Autistic people.

Even if you do find this rare and elusive neurodiversity-affirming clinician, they are still a human being, replete with human tendencies towards bias and stereotypes. Many Autistics go unidentified, or are identified very late in life, because of clinician bias and error. This is particularly true for marginalized groups.

Autism is a behaviour-based diagnosis, meaning it is assessed based on clinical observations, self-reported behaviours, past history, questionnaires filled out by ourselves and significant people in our lives, and checklists the clinician goes through with the individual.

Human observations are flawed and biased

When I was diagnosed with ADHD, myself and my spouse were asked to independently complete symptom checklists. I am very hard on myself, and often over-estimate how troublesome my behaviours are to others.

Conversely (and perhaps sweetly), my husband sees me through rose-coloured glasses, and seems to kindly overlook many of my flaws. As a result, our questionnaires gave very different pictures of my daily “functioning” and behaviours.

I have the privilege of being a well-spoken, educated person who attended my appointment well-informed about ADHD. Instead of viewing these discrepancies in a negative light, and perhaps jumping to the conclusion that I was simply “drug-seeking” or otherwise trying to game the system, the psychiatrist interpreted the differences as a loving husband seeing the best in their spouse.

Had I been a person of colour, someone with a known history of addiction, or part of another marginalized group, the psychiatrist may have perceived me very differently.

Self-identification is valid

Alternatively, if a person has been doing a lot of research on autism and suspects they may be Autistic, self-identifying is absolutely valid. The Actually Autistic community is a great place to learn from the experiences of others.

If you have been searching for a way to understand why you’ve felt so different all your life, or why you seem to struggle more than everyone else, and the described experiences of Autistic adults resonate with you, then it may be worth exploring further.

There are many barriers to formal diagnosis, including stigma, financial costs, clinician bias, a lack of knowledgeable clinicians, and many more which I (and others) have discussed previously.

What are the different autism levels?

To be honest, I don’t rightfully know. The reason for that is, despite our human tendency and desire to oversimplify complex concepts, a human being cannot be boiled down to a single category or functioning level.

There are some who will describe people as having “high support needs” or “low support needs”, which to me, is exactly the same thing as using the out-dated terms “high functioning” or “low functioning”.

Yes, some people need greater support in their daily living than others, that’s a fact of life regardless of one’s neurotype.

It is much more accurate to describe a person’s specific support or accommodation needs for that environment or situation, rather than labelling a person as high or low anything.

A person is not simply always “low functioning” or always “high functioning”. Everybody varies between high, medium, and low-functioning throughout their day depending on a large number of factors.

This includes the context or environment they’re in; the level of support, accommodation, and understanding they receive; their health and mood that day; and a myriad other factors.

For example, when I meet with my son’s new teacher for the school year, I don’t describe him using any kind of functioning label, as that would be inaccurate and unhelpful.

Instead, I describe specific areas with which he may need additional support, and what specific accommodations or supports will help him be most successful. I also outline his strengths and interests because he’s not just a list of needs, he’s a person, and a pretty awesome one at that.

© Jillian Enright, Neurodiversity MB

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References

Al-Beltagi, M. (2021). Autism medical comorbidities. World journal of clinical pediatrics, 10(3), 15–28. https://doi.org/10.5409/wjcp.v10.i3.15

Lord, C., Petkova, E., Hus, V., et al. (2012). A Multisite Study of the Clinical Diagnosis of Different Autism Spectrum Disorders. Arch Gen Psychiatry, 69(3), 306–313. https://doi.org/10.1001/archgenpsychiatry.2011.148

Price, D. (2022). Unmasking Autism: Discovering the new faces of neurodiversity. Penguin Random House LLC.

Sandin, S., Lichtenstein, P., Kuja-Halkola, R., Hultman, C., Larsson, H., & Reichenberg, A. (2017). The Heritability of Autism Spectrum Disorder. JAMA, 318(12), 1182–1184. https://doi.org/10.1001/jama.2017.12141

Statistics Canada. (2020). Autism Spectrum Disorder: Highlights from the 2019 Canadian health survey on children and youth. [Online].

Autism
Neurodiversity
Psychology
Mental Health
Autism Spectrum Disorder
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