An Exploration into Indigenous Autism - Emma Anderson

An Exploration into Indigenous Autism

Emma Anderson

TABLE OF CONTENTS

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 multiply marginalised, 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.

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,

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]. less autistic 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.

ure 2 shows a more nuanced w of the non-linear ectrum. A radar graph is eful in representing the namic, and unique nature of istic ways of being.

t autism traits. It is adapted from an

Indigenous ASD Prevalence

Within the literature I reviewed, the overwhelming consensus is that there is a deficit of methodologically sound research about Indigenous autistics. In fact, the exact prevalence rate of autism within First Nations, Métis and Inuit (FNMI) in Canada is unknown. To extrapolate on the government’s own data, it can be estimated that there are approximately 33,476 Indigenous autistics in Canada. This is based on the 2016 Canadian Census data that found there were 1,673,785 Indigenous people total (though this number was projected to increase with time) [4], and the 2% autism prevalence rate derived from the CHSCY [3]. For context, 33,476 is approximately equal to the total number of students enrolled at the University of Calgary in Alberta [5]. However, as will be discussed in the next section, there is reason to question if the national rate of autism can be accurately

Population

Population

Estimated # of Indigenous autistics based on national rate appliedtoIndigenouspeoples.

Although the prevalence rate for autism within Indigenous peoples is unknown, it is known that Indigenous people of all ages are disproportionately effected by disability. For Indigenous youth, the disability rate is estimated to be double that of all other youth at 12.5%[6].Inthoseovertheageof15, these rates increase to 30% for Métis and 32% for First Nations living off reserve (no number was providedforthoselivingonreserve)

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 focussedontherestofthebody. Forthosewhohavehadaccesstoa 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 whenaccessinghealthcareoutof

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.

youth living on First Nation

Aboriginal settlements in the provinces"

to ascertain the rate of ASD in Indigenous populations

40% (331,025) of all Status

Nations

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

on reserve.

do not elaborate on what specifically is meant by “other Aboriginal settlements” which obfuscates how

additional Indigenous people were excluded.

"children and youth living in foster homes and in institutions"

exclusion

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].

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.

Non-Indigenous

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

Thefirstandmostfrequentlycited 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 peopleswhoarealready

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

AsecondstructuralbarrierforASD diagnosis is that Indigenous people fallbetweenjurisdictionalcracks.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 inter and cross jurisdictional 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 appropriatelydiagnosedwithASD.

The final structural barrier to be discussed is the impact of foster care. As noted in the Indigenous ASD prevalence section, Indigenous childreninCanadaaregrosslyover representedwithinthefostercare

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. Thisisduetotheunstablenatureof 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 willimprovethechild’saccesssince they will likely be more closely located to services, however, as outlinedabove,thisisnotaccurate. 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 theircare[10].Importantly,DiPietro and Illes (2016) note that this “is at odds with the United Nations ConventionontheRightsofthe

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 peoplesarerelatedtothesubjective nature of autism. There is no biological diagnostic marker for autism,whichmeansthatthereisno definitive test that can be used to diagnoseit[19,20].Autismdiagnoses 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 normsforinterpretation,[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,thereisacertaindegree 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 non Indigenous children) live in poverty [12]. Personally, I had to pay hundredsofdollarsoutofpocketin order to pursue an official autism diagnosis from the necessary professionals — this is not everyone’sexperience,butIbelieve it is worth noting especially since I alsoameligibleforNIHBandstill

10 had to pay. Generally speaking, Indigenous people often do not have the socio economic status and privileges associated with accessinganautismdiagnosis. The frequent mismatch of Indigenous people and their experiences with standardised autism assessments and stereotypesisfurthercomplicated 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 intellectualdisability”.Thisleadsto

instancesofdiagnosticsubstitution. Notably, both Lindblom (2014) and Simpson (2021) made reference to 2010 work by Roy and Balaratnasingam that dealt with the issueofASDdiagnosticsubstitution. This study assessed 14 Indigenous Australianswhohadpreviouslybeen 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 Indigenousautismitwillbeexplored briefly.TheCDCdefinesFASDsas“a collection of diagnoses that represent the range of effects that can happen to a person who was exposedtoalcoholbeforebirth”and four diagnoses included under the FASD umbrella are Fetal Alcohol Syndrome, Alcohol-Related NeurodevelopmentalDisorder,

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 non Indigenous people in Canada under the age of 18 are diagnosed with FASDs,andthisnumberincreasesto 1.2% for Indigenous people [22]. The prevalenceratewouldincrease

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 Indigenouspeople.DiPietroand

11

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 theover-emphasisonFASDs.

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

preventable someone to blame racialised lower socio economic status increased Indigenous prevalence (1.2% vs 0.1%)

neurodevelopmental spectrum disorder no definitive test "deviant" overlapping traits

no prevention genetic connection white higher socio economic status prevalence assumed to be equal (2%) associated with privilege

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

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 diagnosedandthe“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 over represented in Indigenous populations”[23]. Iwalkawayfrommyresearchwith twomainquestions.Firstly,how

Conclusionmight 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, particularlyforIndigenouschildren, 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 non Indigenouschildren.Thisisbecause Indigenous children often do not embody the “white, well educated, and middle to upper class” model associatedwithautism[19].

ThesecondquestionIhaveis,how many Indigenous people who have beendiagnosedwithafetalalcohol spectrum disorder also meet the diagnostic criteria for autism? Based on how similarly they can present,theirsubjectivenatureand 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 colonialtrauma,FASD,ratherthan

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 sensitivediagnosisisimportantasit impacts the types of support and accommodationthatwouldbemost 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 implicationsforresourceallocation” 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“apositivecorrelation

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

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15. Goyal, S., Temple, V., Sawanas, C., & Brown, D. (2020). Cognitive profile of adults with intellectual disabilities from indigenous communities in Ontario, Canada. Journal of Intellectual & Developmental Disability, 45(1), 59 65. https://doi.org/10.3109/13668250.2018.1470160

16. Heidinger, L. (2022). Violent victimization and perceptions of safety: Experiences of First Nations, Métis and Inuit women in Canada. Statistics Canada.

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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.

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23. Flannigan, K., Unsworth, K., & Harding, K. (2018). FASD Prevalence in Special Populations. Canada FASD Research Network. https://canfasd.ca/wp content/uploads/publications/Prevalence 2 Issue Paper FINAL.pdf