An Exploration into Indigenous Autism - Emma Anderson

An Exploration into Indigenous Autism Emma Anderson

An Exploration into Indigenous Autism | page 1

TABLE OF CONTENTS Introduction

2

ASD Background Information

3

Indigenous ASD Prevalence

4

Public Health Agency of Canada Report

Under-Diagnosis of ASD

5 7

1. Social Construction of Disability

7

2. Structural Barriers

7

3. Autism Subjectivity

9

Fetal Alcohol Spectrum Disorders

10

Conclusion

12

References

14

An Exploration into Indigenous Autism | page 2

Introduction Ské:kon sewakwé:kon. Emma Anderson iónkia’ts. Kanien'kehá:ka niwakonhwentsiò:ten. Greetings, my name is Emma Anderson and I am of mixed settler and Indigenous ancestry. I am Scottish on both sides of my family, and my maternal family is from Six Nations of the Grand River. I am part of the Mohawk Nation and the Turtle Clan.

I recognised in myself and was diagnosed with Autism Spectrum Disorder (ASD) in 2020 at the age of twenty-five. Despite my relatively late recognition and diagnosis, I have been autistic since birth due the the nature of ASD. As someone whose identity exists at the intersections of Indigeneity and autism, I wanted to utilise the Canadian Roots Exchange Indigenous Youth Research Mentorship to research more about the experiences of my fellow autistic Indigenous kin.

My initial searches resulted in information mostly pertaining to autistic Māori, Australian Aboriginal and Torres Strait Islanders. Although there are similar experiences between the Indigenous peoples of the places colonially known as New Zealand,

Australia, and North America, I wanted to limit the scope of my research to Canada. This is largely because the infrastructure and healthcare systems in each country differs greatly. I also choose to conduct a review of existing literature as this aligned with the time constraints of the project, and honoured the immense care needed when working with research participants who are multiplymarginalised, such as Indigenous autistics. Once I began working on the research project I soon found that there was a distinct lack of information about First Nations, Métis and Inuit autistics across Turtle Island.

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A note about language

It is common to hear people be referred to as “a person with autism” rather than as “an autistic person”. This is known as person-first language vs. identityfirst language. Person-first language was championed by non-autistics, primarily the parents and loved ones of autistics as a way to be less dehumanising.

However, I and many other autistics — although we are not a monolith and individual preferences may differ — actually prefer the identity-first method.

Personally, I view myself as someone who is autistic rather than seeing autism as an attribute that I have. Autism shapes and informs every thought that I have and every action that I take; it makes me who I am.

ASD Background Information Autism, along with fetal alcohol spectrum disorders and cerebral palsy, are the three most commonly diagnosed neurodevelopmental disabilities (NDDs) [1]. The American Psychiatric Association defines autism as “a complex developmental condition involving persistent challenges with social communication, restricted interests, and repetitive behaviour” [2]. Contrary to popular belief, autism is a neurotype that a person either has or does not; there is no way to be “a little bit autistic”. As suggested in the introduction, less autistic

although it is often conceptualised as a disorder affecting children, autism is a lifelong condition. In Canada, “males were diagnosed approximately four times more frequently than females” [3]. The most recent prevalence data comes from the 2019 Canadian Health Survey on Children and Youth (CHSCY), from which the Public Health Agency of Canada made a report specifically about autism and found that 2% or 1 in 50 people in Canada under the age of eighteen are diagnosed autistic [3].

more autistic

figure 1 - a gradient graph with "less autistic" on one end and "more autistic" on the other. There is a "no symbol" in the centre to represent that this is inaccurate. It is adapted from an image created by Autism_Sketches on Twitter.

Figure 1 depicts the way that people often conceptualise the autism spectrum.

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Figure 2 shows a more nuanced view of the non-linear spectrum. A radar graph is useful in representing the dynamic, and unique nature of autistic ways of being. figure 2 - a radar graph showing varying amounts of different autism traits. It is adapted from an image created by Autism_Sketches on Twitter.

Indigenous ASD Prevalence Within the literature I reviewed, 35,151,728 the overwhelming consensus is that Canadian Population 2016 there is a deficit of methodologically sound research about Indigenous autistics. In fact, 1,673,785 the exact prevalence rate of autism Indigenous Population 2016 within First Nations, Métis and Inuit (FNMI) in Canada is unknown. To 33,476 extrapolate on the government’s Estimated # of Indigenous autistics own data, it can be estimated that based on national rate there are approximately 33,476 Indigenous autistics in Canada. This applied to Indigenous peoples. is based on the 2016 Canadian Census data that found there were Although the prevalence rate for 1,673,785 Indigenous people total autism within Indigenous peoples is (though this number was projected unknown, it is known that to increase with time) [4], and the Indigenous people of all ages are 2% autism prevalence rate derived disproportionately effected by from the CHSCY [3]. For context, disability. For Indigenous youth, the 33,476 is approximately equal to the disability rate is estimated to be total number of students enrolled at double that of all other youth at the University of Calgary in Alberta 12.5% [6]. In those over the age of 15, [5]. However, as will be discussed in these rates increase to 30% for the next section, there is reason to Métis and 32% for First Nations question if the national rate of living off reserve (no number was autism can be accurately provided for those living on reserve)

An Exploration into Indigenous Autism | page 5 which is in stark contrast with the rate of 22% for the general population [7]. The rate for Inuit is somewhat of an outlier at 19%, however this is theorised as being related to their population’s relatively younger age [7].

Environmental degradation and human induced climate change are linked with poorer health outcomes and increased rates of disability [8].

Tesluk, Illes, and Matthews (2017) point to the specific need for a closer examination of the ways that changing environmental conditions impact Indigenous peoples neurological and mental health as much of the research has been focussed on the rest of the body.

For those who have had access to a diagnosis and autism specific supports, an additional factor that impacts the accuracy of Indigenous ASD prevalence information is the inconsistent recording of Indigenous identity [1].

Many Indigenous people are hesitant to disclose their Indigenous identity when accessing healthcare out of

fear. Healthcare professionals and researchers alike have enacted immeasurable systemic harm on Indigenous peoples [1,8,9,10]. Di Pietro and Illes (2016) found that the perceived safety and correspondingly the instances of self-identification varies greatly throughout the country. Service providers know that Indigenous autistics are accessing support services specifically for autistics and are participating in neurodevelopmental research, however, it is assumed that many of these people are purposely not disclosing their Indigenous identity as a means of mitigating potential harm [1,10].

This means that Indigenous people who access services and do not self-identify contribute to the overall recorded number of autistics, but not the recorded number of Indigenous autistics because their race is not noted. The discrepancy in noting Indigenous identity leads to an artificially low representation of Indigenous autistics.

Public Health Agency of Canada Report The report cited earlier by the Public Health Agency of Canada produced from the CHSCY data sought to discover if there were autism prevalence differences based on various sociodemographic factors including Indigenous identity, and found there to be “no statistically significant differences” [3]. However, importantly, there were two exclusions from the CHSCY that directly impacts the rate of Indigenous participation, and therefore skews the data.

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1st exclusion | "children and youth living on First Nation reserves and other Aboriginal settlements in the provinces" This is problematic when trying to ascertain the rate of ASD in Indigenous populations because 40% (331,025) of all Status First Nations people live on reserve — this is about 20% of the entire Indigenous population in Canada [11]. The number of people excluded from the data increases further when we consider that there are also First Nations people without Status who live on reserve. They do not elaborate on what specifically is meant by “other Aboriginal settlements” which obfuscates how many additional Indigenous people were excluded.

2nd exclusion | "children and youth living in foster homes and in institutions" This exclusion, though more seemingly indirectly, negatively impacts Indigenous representation in the data due to the exorbitant numbers of Indigenous youth in foster homes. It is estimated that despite making up only 7.7% of children under the age of fourteen in Canada, Indigenous children account for 52.2% of all children in foster care [12]. Due to the over-representation of Indigenous “children and youth in foster homes and in institutions”, this second exclusion works to further prohibit Indigenous participation in the survey.

Indigenous

Non-Indigenous

% of Population

100 75 50 25 0

Children under 14

Children in foster care

figure 3 - a stacked bar chart depicting the proportion of the population that is Indigenous and nonIndigenous. The two populations shown are children under 14 and children in foster care.

An Exploration into Indigenous Autism | page 7 I challenge the ability of the Public Health Agency of Canada to meaningfully claim that there is “no statistically significant differences” among various sociodemographic factors including “indigenous identity” because of the outlined exclusions. This claim seems disingenuous when the survey largely excluded Indigenous peoples. . We will return to the CHSCY later and see how it further fails to accurately represent the health realities of Indigenous peoples.

Under-Diagnosis of ASD

Aside from methodological flaws, there also is a scarcity of information about Indigenous autistics because autism is under-diagnosed in Indigenous populations. Based on the reviewed literature, the reasons for this under-diagnosis can be put into three categories: the social construction of disability, structural barriers, and autism subjectivity.

1) SOCIAL CONSTRUCTION OF DISABILITY The first reason for the underdiagnosis of Indigenous autistics is related to the social construction of disability. Shochet et al (2020) explain that “[d]isability is a concept that people conceptualise in different ways depending on their cultural values, beliefs, and sociohistorical context”.

Typically, definitions of disability from a mainstream Western perspective focus heavily on productivity and economic output; the focus is on how well an individual performs under capitalism [13]. Within the Medical Model of Disability, “deviations from the norm are explained as deficit-based and pathological in nature” [9] rather than as a natural manifestation of human diversity [14]. The socially

constructed nature of disability differs from the other reasons for under-diagnosis because it is not about an actual barrier to diagnosis, but rather is about not seeing the need for a diagnosis [14].

2) STRUCTURAL BARRIERS The first and most frequently cited structural barrier to autism diagnosis for Indigenous peoples were concerns related to physical location and distance from appropriate supports and services [1,6,13,14,15].

Quinlan (2018) specifically noted the dangers associated with needing to hitchhike to appointments due to the absence of local healthcare services and accessible public transit.

This puts Indigenous peoples who are already

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disproportionately at-risk of experiencing violent victimisation into an increasingly vulnerable position [16].

A second structural barrier for ASD diagnosis is that Indigenous people fall between jurisdictional cracks. In Canada, healthcare is provided to each citizen through their provincial/territorial health insurance. However, as described

by Stavropoulou-Kampoukou (2019) for Indigenous people “funding and delivery for services… is shared by federal, provincial/territorial and First Nations governments”. The federal government provides the Non-Insured Health Benefits (NIHB) program, however, only Status First Nations and Inuit who are “recognized by an Inuit land claim organization” are eligible [17]. Due to “weak interand crossjurisdictional coordination of services”, Indigenous people face more difficulty in having their healthcare needs met [10]. This not only leads to poorer health outcomes generally, but also directly effects the number of Indigenous people who can be appropriately diagnosed with ASD. The final structural barrier to be discussed is the impact of foster care. As noted in the Indigenous ASD prevalence section, Indigenous children in Canada are grossly overrepresented within the foster care

system.

In addition to the undeniable and unquantifiable trauma caused by the removal of Indigenous children from their families, it also directly interferes with the ability for Indigenous peoples to be diagnosed with ASD. This is due to the unstable nature of foster care in which there can be frequent caseworker changes and children can be shuffled between multiple placements [1].

This disruption makes it “difficult to ascertain if the medical care needs of foster care children are being met in a timely and consistent manner” [1].

As a result of Indigenous people having unequal access to healthcare, there is the belief that Indigenous children with complex health needs should be removed from their communities and placed into foster care [1].

The understanding is that foster care will improve the child’s access since they will likely be more closely located to services, however, as outlined above, this is not accurate.

This creates a very real fear for parents that if they take their child to be assessed for ASD (or for any other developmental concerns) that the child will be removed from their care [10]. Importantly, Di Pietro and Illes (2016) note that this “is at odds with the United Nations Convention on the Rights of the

An Exploration into Indigenous Autism | page 9 Child, which states that socioeconomically disadvantaged families must be provided with the economic and social supports necessary to safely care for their children and youth at home”. Foster care, and the threat thereof, leads to a latency of ASD diagnosis [9,18].

This is significant because 94% of autistics who were diagnosed before reaching adulthood were diagnosed before the age of 12 [3].

3) AUTISM SUBJECTIVITY The final grouping of barriers to autism diagnosis for Indigenous peoples are related to the subjective nature of autism. There is no biological diagnostic marker for autism, which means that there is no definitive test that can be used to diagnose it [19,20]. Autism diagnoses are therefore heavily informed by subjective observations made by outsiders (parents, teachers, physicians) of those exhibiting traits associated with autism. Because of these factors, the diagnostic process can be “lengthy and complex” [1].

Researchers question the applicability of standardised autism assessments for Indigenous patients. This is because “most standardised cognitive assessment instruments rely on population norms for interpretation, [but] the

population groups studied rarely include significant numbers from [I]ndigenous communities” [15].

Because of their exclusion and Indigenous ways of knowing and being not being reflected, Indigenous people’s results on standardised assessments, regardless of disability, generally deviate from the norm [10].

Similarly, Indigenous children will be marked as “special needs” simply because “their learning and communication styles are different from what the teacher is used to” [10].

Typically, there is a certain degree of privilege associated with having access to an autism diagnosis.

Inman (2019) delves into the ways that the mother of an autistic child “frequently seems to be white, well educated, and middle to upper class”. They note that “autism diagnoses are positively associated with higher socio-economic status” [19]. This is significant because an estimated 38% of Indigenous children (compared to 7% of nonIndigenous children) live in poverty [12]. Personally, I had to pay hundreds of dollars out of pocket in order to pursue an official autism diagnosis from the necessary professionals — this is not everyone’s experience, but I believe it is worth noting especially since I also am eligible for NIHB and still

An Exploration into Indigenous Autism | page 10 had to pay. Generally speaking, Indigenous people often do not have the socio-economic status and privileges associated with accessing an autism diagnosis.

The frequent mismatch of Indigenous people and their experiences with standardised autism assessments and stereotypes is further complicated by the fact that the diagnostic criteria overlaps with other conditions [19].

Additionally, Shochet et al (2020) found that, “[i]n n some ethnic groups, it appears that professionals are less likely to consider comorbid developmental disorders if the child already has a diagnosis of intellectual disability”. This leads to

instances of diagnostic substitution.

Notably, both Lindblom (2014) and Simpson (2021) made reference to 2010 work by Roy and Balaratnasingam that dealt with the issue of ASD diagnostic substitution.

This study assessed 14 Indigenous Australians who had previously been diagnosed with schizophrenia, and found that 13 of the patients (93%) actually met the diagnostic criteria of ASD [9,18]. Another study found that 15 out of 21 people (71%) diagnosed with fetal alcohol spectrum disorders actually also fit the criteria for ASD [19]. Fetal alcohol spectrum disorders were the most frequently noted substitution amongst Indigenous people [1,6,9,14,19].

Fetal Alcohol Spectrum Disorders Indigenous experiences of fetal alcohol spectrum disorders (FASDs) is a topic warranting its own research project, however, due to the frequency with which it appeared in the research about Indigenous autism it will be explored briefly. The CDC defines FASDs as “a collection of diagnoses that represent the range of effects that can happen to a person who was exposed to alcohol before birth” and four diagnoses included under the FASD umbrella are Fetal Alcohol Syndrome, Alcohol-Related Neurodevelopmental Disorder,

Alcohol-Related Birth Defects, and Neurobehavioural Disorder Associated with Prenatal Alcohol Exposure [21]. Similarly to autism, FASDs are neurodevelopmental spectrum disorders with no biological diagnostic marker [19,20].

There was a separate report made from the CHSCY data focussed specifically on FASDs. This report estimated that 0.1% of nonIndigenous people in Canada under the age of 18 are diagnosed with FASDs, and this number increases to 1.2% for Indigenous people [22]. The prevalence rate would increase

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further when the estimated 1 in 4 Indigenous children in foster care diagnosed with a FASD are factored in [1].

As a consequence of methodological flaws in FASD research in Canada*, Indigenous children became a “disproportionate focus” of the research [6]. This led FASDs to be constructed as “an Indigenous problem” and become the primary focus of NDD research with Indigenous people. Di Pietro and

Illes (2016) analysed existing research on Indigenous children with the three most common NDDs — cerebral palsy, ASD, and FASDs — and found that 51 of the 52 reports (98%) “focussed exclusively on FASD”. The lack of research on Indigenous autistics — described by di Pietro and Illes (2016) as a “violation of fundamental ethical principles in research” — can be understood, in part, as a result of the over-emphasis on FASDs.

figure 4 - a Venn diagram depicting FASD, ASD, and the overlap of the two. Aside from the prevalence rates, information is from Inman (2019).

no prevention

preventable someone to

genetic

blame

connection

racialised

white

lower socio-

higher socio-

economic status

economic status

increased

prevalence assumed

Indigenous prevalence (1.2% vs 0.1%)

neurodevelopmental

to be equal (2%)

spectrum disorder

associated with

no definitive test

privilege

"deviant" overlapping traits

*see di Pietro and Illes (2014), (2016), and Inman (2019) for more information

An Exploration into Indigenous Autism | page 12

Conclusion The connection between autism and fetal alcohol spectrum disorders was completely new to me when I first started my research. I would have never guessed that, based on the government’s own estimates, autism is diagnosed more frequently (2%) in Indigenous people than fetal alcohol spectrum disorders are (1.2%) [3,22]. This 0.8% prevalence difference is significant given the myriad of factors that might cause ASD to be under-diagnosed and the “potential overidentification of FASD in [Indigenous] communities” [6].

Inman (2019) contributes my initial assumption about the relative prevalence of these NDDs — a widely held and upheld assumption — to the “Absence and Epidemic” framework. Wherein, Indigenous people are absent from discourse about autism due to “a discursive preoccupation” with Indigenous FASDs that frames them as an epidemic [19].

This framing contradicts with the Canada FASD Research Network’s claim that “there is not enough evidence to conclusively say that FASD is overrepresented in Indigenous populations” [23].

I walk away from my research with two main questions. Firstly, how

might the CHSCY data, and subsequent prevalence rates, change had children living in Indigenous communities and foster care not been excluded? The two excluded groups formed the basis of FASD research [19,23], and as such, I believe that the FASD rate, particularly for Indigenous children, would increase. I think, however, that they would find there to be a “statistically significant difference” [3] in the rates of ASD between Indigenous children and nonIndigenous children. This is because Indigenous children often do not embody the “white, well educated, and middle to upper class” model associated with autism [19].

The second question I have is, how many Indigenous people who have been diagnosed with a fetal alcohol spectrum disorder also meet the diagnostic criteria for autism?

Based on how similarly they can present, their subjective nature and the drastically different ways we have come to think about each diagnoses, I believe that many people could also be diagnosed as autistic. Inman notes that “these categories [ASD and FASD], despite their instability, are not arbitrary: they have purpose, and they are biopolitical” [19]. They continue on to say that, "[i]n the context of colonial trauma, FASD, rather than

An Exploration into Indigenous Autism | page 13 autism, more easily conforms to a narrative of intergenerational trauma” [19]. The diagnosis of FASD does not exist in a vacuum; there often is stigma and blame associated with FASDs due to their preventable nature [1,6]. Inman claims that “[t]he diagnosis of FASD confirms to the state the very need to surveil and contain the ‘contagion’ of the Indigenous mother” [19].

Receiving an accurate, culturally sensitive diagnosis is important as it impacts the types of support and accommodation that would be most appropriate for people with either FASD or ASD. Lindblom (2017) states that “a correct diagnosis of autism can entitle the family and school to funding opportunities for interventions and support”.

Additionally, there could be “serious implications for resource allocation” as “the lack of basic epidemiology data… makes decision-makers weary of intervening” [1]. The belief is that supports for Indigenous autistics are not needed because of their absence [19]. Furthermore, there is community to be found amongst those with similar life experiences and the same diagnoses. Simpson (2021) speaks to the role that autistic self-identity can play, and says that research shows “a positive correlation

between self-identifying as a member of the autistic community and an increase in positive protective factors for improved individual health and wellbeing”.

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2. Jadhav, M., & Schlepper, M. A. (2021). What is Autism Spectrum Disorder? American Psychiatric Association. https://www.psychiatry.org/patientsfamilies/autism/what-is-autism-spectrum-disorder 3. Autism spectrum disorder: Highlights from the 2019 Canadian health survey on children and youth. (2022). Public Health Agency of Canada . https://www.canada.ca/en/public-health/services/publications/diseasesconditions/autism-spectrum-disorder-canadian-health-survey-children-youth2019.html 4. Aboriginal peoples in Canada: Key results from the 2016 Census. (2017). Statistics Canada. https://www150.statcan.gc.ca/n1/daily-quotidien/171025/dq171025aeng.htm?indid=14430-1&indgeo=0 5. Facts and figures: UCalgary by the numbers. (n.d.). Retrieved August 31, 2022, from https://www.ucalgary.ca/about/our-organization/facts-and-figures 6. di Pietro, N., & Illes, J. (2014). Disparities in Canadian Indigenous Health Research on Neurodevelopmental Disorders. Journal of Developmental and Behavioral Pediatrics, 35(1).

7. Hahmann, T., Badets, N., & Hughes, J. (2019). Indigenous Peoples with Disabilities in Canada. Statistics Canada. https://books-scholarsportalinfo.subzero.lib.uoguelph.ca/en/read?id=/ebooks/ebooks5/cpdc5/2020-0312/1/10102956#page=1 8. Tesluk, J., Illes, J., & Matthews, R. (2017). First nations and environmental neuroethics: Perspectives on brain health from a world of change. In Neuroethics: Anticipating the Future (pp. 455–476). Oxford University Press. https://doi.org/10.1093/oso/9780198786832.003.0023 9. Simpson, H. A. (2021). Forming strong cultural identities in an intersecting space of indigeneity and autism in Canada, the United States, Australia, and New Zealand.

AlterNative, 17(3), 416–424. https://doi.org/10.1177/11771801211039274 10. Stavropoulou-Kampoukou, I. (2019). Culturally Safe Service Delivery Approaches for Indigenous Children with Autism Spectrum Disorder: A Literature Review (pp. 1–37).

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17. Who is eligible for the Non-Insured Health Benefits program. (2022). Government of Canada. https://www.sac-isc.gc.ca/eng/1574187596083/1576511384063 18. Lindblom, A. (2014). Under-detection of autism among First Nations children in British Columbia, Canada. Disability & Society, 29(8), 1248–1259. https://doi.org/10.1080/09687599.2014.923750 19. Inman, E. (2019). Absence and epidemic: Autism and fetal alcohol spectrum disorder in Indigenous populations in Canada. Canadian Journal of Disability Studies, 227– 261.

20. Lindblom, A. (2017). Exploring autism and music interventions through a First Nations lens. AlterNative: An International Journal of Indigenous Peoples, 13(4), 202– 209. https://doi.org/10.1177/1177180117729854 21. Fetal Alcohol Spectrum Disorders (FASDs). (2022). Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/fasd/facts.html 22. Palmeter, S., Probert, A., & Lagacé, C. (2021). At-a-glance - FASD prevalence among children and youth: results from the 2019 Canadian Health Survey on Children and Youth. Health Promotion and Chronic Disease Prevention in Canada, 41(9). https://www.canada.ca/en/public-health/services/reports-publications/healthpromotion-chronic-disease-prevention-canada-research-policy-practice/vol-41 -no-9-2021/fasd-prevalence-children-youth-2019.html 23. Flannigan, K., Unsworth, K., & Harding, K. (2018). FASD Prevalence in Special Populations. Canada FASD Research Network. https://canfasd.ca/wpcontent/uploads/publications/Prevalence-2-Issue-Paper-FINAL.pdf