Autism voices: Perspectives of the needs,challenges,and hopes for the future of autistic youth

Introduction

Although the current literature has identified multiple factors that contribute to challenges during adolescence for autistic ¹ youth (Carter et al., 2014; Fleury et al., 2014; Lai et al., 2019; Simonoff et al., 2008; Visser et al., 2017), many of these insights have not come directly from youth themselves. Autism research to date has overly relied on proxies including teachers, parents, clinicians, siblings, and various other stakeholders (Pellicano et al., 2014), but their accounts do not always align with those of autistic youth (e.g. Clark et al., 2015). To better support the transition into adolescence and subsequent transition into adulthood, we need a better understanding of how autistic youth perceive barriers within their environments, what motivates them and promotes their happiness, and what their hopes are for their future. Their active involvement is crucial for facilitating optimal future outcomes. Autistic adolescents’ involvement in transition planning for post-school is associated with greater happiness, success in post-secondary environments, and greater participation in their community (King et al., 2005), yet many autistic adolescents continue to be excluded in transition planning (Lee & Carter, 2012). Similarly, the inclusion of autistic individuals in research is also related to their empowerment and community belonging (Andersen & Dolva, 2015), in addition to optimizing research and health policies (Fletcher-Watson et al., 2018; Perry-Hazan, 2016). As a result of advocacy by autistics, families, and research allies, an increasing number of qualitative studies are now being conducted and published (van Schalkwyk & Dewinter, 2020); however, these studies almost always favor autistic individuals who use spoken communication and do not have an intellectual disability. This lack of inclusion of the entire spectrum does not align with The United Nations Convention on the Rights of the Child, which states that all children have a right to express themselves and to be included in decisions that affect them.

For the past few years, our team has worked to broaden the inclusion of autistic adolescents in qualitative research, regardless of their cognitive and speech abilities. This project, titled Autism Voices, developed and evaluated novel methods to capture first-person perspectives of autistic youth (Courchesne et al., 2021; Tesfaye et al., 2019). The first step of the project consisted of a synthesis of published methods used to capture the first-person perspectives of children with various disabilities. These methods were then presented and discussed with a focus group composed of parents of autistic children to assess their suitability for the Autism Voices project. The synthesis of methods and results from the focus group are detailed in a previous publication (Tesfaye et al., 2019). Guided by findings from that publication, we developed a novel method specifically designed to interview autistic adolescents of all language and intellectual levels. Our method was piloted with the guidance of autistic youth and their parents, working with an interdisciplinary team of autism researchers, an ethicist, and an augmentative and alternative communication (AAC) specialist. The Autism Voices protocol was then applied to a heterogeneous sample of autistic adolescents.

In this study, we used a qualitative approach to identify key themes that arose from the Autism Voices interviews that were conducted with a group of autistic youth with various language and cognitive abilities. These interviews focused on the facilitators and barriers youth perceived throughout multiple environmental contexts and social relationships, in addition to their aspirations and hopes for the future. Insights from these participants can be used to understand what matters to autistic youth and to better support autistic youth throughout their adolescent journey and especially during periods of transition.

Method

The results presented in this article are drawn from the Autism Voices project. In this article, we present the results arising from qualitatively analyzing the responses provided by this same sample of autistic adolescents.

Participants

As described in Courchesne et al. (2021), 31 participants (6 female and 26 male) for this study were drawn from two sites (Edmonton and Montreal) of the Pathways to Better Outcomes in ASD study (aka Pathways), a longitudinal Canadian inception cohort. The study was approved by the Research and Ethics Board at the University of Alberta and at McGill University. Informed consent/assent was obtained from parents and participants. Pathways participants all received an autism spectrum disorder diagnosis between the age of 2:0 and 4:11 years and had no other known genetic, chromosomal, or neuromotor disorders. For participation in Autism Voices, no additional exclusion criteria were applied. At the time of the study, participants were between 11 and 18 years of age (M = 15.41, standard deviation (SD) = 2.26). Family household income was above $80,000 Canadian dollars for 55% of participants, and 74% identified as Caucasian (see Table 1). Participants’ nonverbal IQ scores ranged from 33 to 152 (M = 96.94, SD = 22.30) as assessed using the Perceptual Reasoning Index of the Wechsler Abbreviated Scale of Intelligence (WASI; Wechsler, 2011), except for one participant who was assessed with the Leiter International Performance Scale (Leiter-3; Roid et al., 2013), as they were unable to complete the Wechsler subtests. Language level was also quite varied, as demonstrated by their most recent Pathways study assessment, whereby 2 participants were administered Module 1 of the Autism Diagnostic Observation Schedule (ADOS; Lord et al., 2000), 4 were administered Module 2, 14 were administered Module 3, and 10 were administered Module 4. Two participants did not complete a recent ADOS as they opted out of previous study timepoints but were both verbally fluent.

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Table 1.

Income and ethnicity.

Demographics	Percentage
Ethnicity
Caucasian	74.2
Arab/West Asian	9.7
South East Asian	3.2
South Asian	6.5
Black	3.2
Mixed ethnicity	3.2
Household income
>$80,000	54.8
<$80,000	3.2
<$60,000	6.5
<$40,000	12.9
<$20,000	12.9
Information not available	9.7

Procedure

A pre-interview survey was first conducted over the phone with a primary parent/caregiver in order to tailor the interview to the profile and preferences of each autistic adolescent. Information gathered during this survey included the participant’s preferred method of communication and their level of comfort using various communication methods (writing, texting, using pictures, talking, typing, etc.), as well as their living situation, interests, knowledge of their diagnosis, and preferred language (French or English).

Following the phone survey, an appointment was made to conduct the interview with youth in their preferred setting, either in their home (n = 8) or a familiar lab/hospital setting (n = 23). Consent was obtained from a parent or legal guardian or from participants themselves if they were 18 years old and able to consent. Assent was obtained from all other participants, and the Autism Voices interview was then conducted by one of four interviewers (R.T., V.C., W.M, or a trained research assistant) and videorecorded. The use of storyboard strategies to make assent inclusive of all communication abilities was adapted from Harrington et al. (2014) and Beresford et al. (2004); see Figure 1. Courchesne et al. (2021) provided details regarding development of the parent pre-interview survey, the assent process, and the Autism Voices interview.

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Figure 1.

Example of the assent storyboard strategy used in ASD voices.

The Autism Voices interview is a semi-structured interview with pre-determined activities and topics to explore. Given the semi-structured nature of the interview, the components were not always administered in the same order. Some questions could be skipped if the content was addressed previously in the interview, and follow-up questions could be added to elicit more elaborate responses from participants when further clarity was needed. The interview included an ordering activity wherein the participant was asked to order four topics (family, friends, future, and school) according to what worried them from most to least. These topics were then discussed from the most to least worrisome. An additional topic dedicated to leisure also allowed for the exploration of participants’ interests and hobbies. Participants were also queried about their experience with various emotions such as sadness, anger, happiness, and stress. Participants who were aware of their autism diagnosis and able to discuss it were also questioned about their experience and opinions about autism. A closing reflective activity was used as a wrap-up to the interview (e.g. What three things they would change in their life if they had the power to do so? What would be involved in their “best day” ever? and What did they think was their “superpower”?). For a detailed description of topic questions, see Supplemental Table S1. For all participants, regardless of their intellectual or language level, labeled pictures were used by the interviewer when asking the questions and various outputs were offered for the participants to answer (writing, texting, answering verbally, choosing/sorting picture cards), depending on their preferences and ability to use these communication modalities. The use of pictures was found to be beneficial not only for participants to communicate with interviewers but also for interviewers to communicate and structure the exchange of information (Courchesne et al., 2021). Figure 2 shows (a) the Autism Voices interview outline, (b) an example of the use of pictures to ask the interview questions and how all participants could use pictures to communicate their responses (e.g. sorting cards from least to most), and (c) an example of how participants used picture cards for binary response options (e.g. yes/no and I like/I do not like). Both speaking and minimally speaking ² participants were provided with picture prompts to help them understand what response options were available to them. For instance, when asked for what jobs they would like to have in the future, the interviewer provided multiple picture card options with job descriptions (e.g. chef, teacher, musician, etc.). For detailed information on the use of universal design integrated into Autism Voices and evaluations on the utility of these methods, see Courchesne et al. (2021).

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Figure 2.

(a) Flowchart depicting the order of interview topics in ASD voices (b) sorting cards activity; participant’s ranked the interview topics that worried them the most to least (c) example of binary response options; participant’s were provided with picture card options after a question was posed, then asked to provide a response by categorizing the cards (e.g., “I Don’t Like/I Like”).

Community involvement

As detailed in the previous Autism Voices papers (Courchesne et al., 2021; Tesfaye et al., 2019), our methods are informed by the lived experiences of parents caring for an autistic child and autistic participants. Autism Voices was developed and implemented as a result of community involvement and aims to promote the integration of the autistic community in scientific knowledge production.

Interview transcription and coding

All recorded interviews were transcribed, and thematic analysis was used to interpret the data. Data analysis was conducted by a team of researchers with the close supervision of academic experts in qualitative research methods. W.M., R.T., and V.C. began by coding the same three interviews using a deductive coding approach, as the semi-structured interview provided an initial coding framework. The three coders met to combine their codes and refine them based on consensus. There was considerable agreement, with slight differences attributed to variations in labeling or definitions. Following team consensus, two additional interviews were analyzed. The coders then took an inductive approach by combining codes that emerged as general salient themes across the interview; subcodes were also identified at this stage. Multiple larger team discussions and iterative coding contributed to strengthening the quality and trustworthiness of data interpretation (Braun & Clarke, 2006; Lincoln & Guba, 1986). Once a final coding framework was agreed upon, V.C. and R.T. coded the remaining interviews and reported salient themes based on their salience and frequency. Coding of minimally speaking participants required additional verification to ensure interviewers’ questions were clear and included revisiting original videos when in doubt of participants’ responses. For each theme that arose, the coders specifically assessed how representative it was of the various output modalities and cognitive/language abilities within the sample.

Results

We were able to capture the complexities of day-to-day life and future aspirations of both speaking and minimally speaking participants, regardless of their selected output modality. We identified five salient themes that arose across the semi-structured interviews. The first theme (autistic identities) captures youth’s own definitions of autism and how they view their autism diagnosis as an integral part of who they are. Theme 2 (thinking about the future) highlights that most youth interviewed have considered or planned aspects of their future. We identified three pathways that informed youth’s decisions about their future. This included the following: (a) Practicality: making future decisions by practically assessing how they can fulfill responsibilities as independent adults (e.g. pay bills); (b) Stability: making future decisions based on a desire for the future to remain similar to their current lives and/or what they have been exposed to in their ecosystems; and (c) Interests: making future decisions based on what interests them. Theme 3 (seeking social connections on their own terms) reflects that many of the autistic youth interviewed wanted to pursue friendships and romantic relationships that are meaningful and that align with their needs and interests. Theme 4 (seeking autonomy) represents youth’s desires to gain independence in matters that affect them. Theme 5 (school as both a stressor and social facilitator) illustrates school as a conflicting environment for youth—both as an unwelcoming space and a welcomed opportunity to engage with peers. Finally, theme 6 (experiences of stress and anxiety) captures the high prevalence of mental health issues and lack of coping mechanisms described by youth. All themes are further detailed below with supporting quotes. Quotes extracted from interviews conducted in French were translated to English by V.C.

Theme 1: autistic identities

Youth described autism in complex and nuanced ways. There was no overwhelming preference for describing being autistic as either negative or positive. Many of the participants described the diagnosis as a human variation stemming from differences in brain function:

Ahm, like a lot of times, autistic people’s brains work differently . . . Like, if you look at it, a neuro-typical brain and an autistic brain you won’t find anything different by individually looking at them. It’s just the paths of how things transmit in a neuro-typical brain and an autistic brain are different. It’s kind of like how people, it’s kind of like Canadian and American people write back and forth and Chinese [people] write up and down. (Participant 12, Female, 13 years old)

Although they identified many challenges linked to autism traits or perceived autism traits, they recognized that being autistic was part of their identity. Youth indicated that rather than changing who they are as autistic individuals, they would prefer barriers in their environment, or specific behaviors with which they struggle, to change. Hence, youth conveyed that they were “OK” with their autism diagnosis, but they wanted being autistic to be easier:

It’s not like “oh no, what am I going to do?,” it’s just something I have, I have to live with [. . .] I see everyone else, they are talking normally and making friends, relationships and finding out what they want to do, and I’m having a harder time with it. I wouldn’t change the fact that I have autism because it’s who I am. And I think if I really did change that it would be really bad because I’d be changing a part of me. So I’d say make it easier that I can have friends . . . (Participant 23, Male, 16 years old)

Some of the main challenges participants described were related to their diagnosis, such as social difficulties (e.g. making friends and understanding social cues). However, many challenges they identified were not directly linked to autism traits but rather to other co-occurring conditions (attention difficulties, impulsivity, anxiety) and experiences of mistreatment or stigma. For instance,

Ahh, mainly lots of people can misjudge me sometimes and I’m like “dude I’m a regular person” and a few people are like “you’ll never get a girlfriend because you’re autistic,” and I’m like “wow, that’s a little prejudice, there.” Probably. I don’t know if, I don’t know what they would call it when people don’t like people under the spectrum . . . (Participant 28, Male, 17 years old)

Participants also identified positive aspects of being autistic. Similar to the challenges, some advantages were directly linked to clinical autism features (e.g. developing knowledge and skills by focusing on specific interests), while other advantages were related to cognitive abilities (e.g. having a good memory, being “smarter,” and seeing situations uniquely or creatively). Moreover, youth distinguished between their personal experience of autism and the experiences of other autistic youth. Their observations of multiple autistic profiles were also highlighted when defining what autism meant to them.

Theme 2: thinking about the future

In the initial ordering activity, the future was the second most frequently identified worry among participants. Most participants, both minimally speaking and speaking, were able to identify attributes they both wanted and did not want in their future. Youth both looked forward to the future and identified the theme as a major stressor. Two participants declined to discuss the future as this made them feel uncomfortable or sad.

Participants’ approaches to planning for the future were highly varied. We identified three common pathways that guided youth’s decisions about their future: practicality, familiarity, and interests.

Theme 3: seeking social connections on their own terms

Despite enjoying being alone sometimes, many participants expressed a need to connect more with other people. However, they often specified that this would need to occur under specific conditions (e.g. with only a few peers, like-minded individuals, or other autistic peers). This need for social connections highlighted the fact that most participants wanted to engage in meaningful relationships and many prioritized quality over quantity:

Well, the loneliness in itself, like isn’t great, but usually if I can do something else while being alone I like it. I do prefer having fewer people in my environment. [. . .] I’d rather have a few close friends rather than just more friends [. . .] More close friends, I guess it would just kind of just give me another purpose in life, like something to care about, beyond the usual. (Participant 26, Female, 18 years old)

Minimally speaking participants were often able to tell the interviewer about their need for social connections, either verbally or by using the picture cards that were provided to them:

Moreover, by repeating the names of specific people in their lives in various contexts, it appeared that minimally speaking participants conveyed the importance of specific individuals within their support network.

Some youth indicated that they would like to establish romantic relationships later in life but currently were focused on more immediate priorities such as education. Participants also recognized that romantic relationships had to fit their needs related to autonomy and being understood.

Theme 4: seeking autonomy

In addition to social connections, it was clear that many youth wanted to gain autonomy, particularly in the sense of being able to make independent decisions about matters that affect them. While some thought that more decision-making autonomy was possible, others were aware of the support they would need throughout their lives:

Minimally speaking participants were able to express this need for support in various ways, including requesting their parents’ presence during the interview or seeking approval from a parent in the room when answering interview questions:

Theme 5: school as a both a stressor and social facilitator

School was the primary stressor for the majority of participants, including some minimally speaking youth who placed the school card under the worry pile. Many described the school environment as unwelcoming, a detriment to their well-being, and a barrier to future aspirations:

I had this one teacher in grade 4 who people said she was very caring and kind, like all the people who ever met her said. So and I walked up to her, told her I was being bullied and she literally straight up said she did not care. After that I lost a lot of trust and after that I really . . . got the sense that the world is a terrible place—that like you can never know what someone is actually thinking. They could be a liar . . . I just ended up being scared of the world . . . And after that it prompted me to go to homeschool because I never wanted to have that experience again. (Participant 12, Female, 13 years old)

Participants identified multiple stressors in their school environment, including a lack of positive rapport with teachers and overwhelming sensory surroundings (e.g. class size, transitions between classes, peers disrupting class, and feeling “drowned out” by their workload and academic evaluations). However, despite being a stressful environment, many youth highlighted that school was enjoyable because they could meet and spend time with their peers. For the majority of youth, school was the only environment where they made friends and interacted with peers of the same age.

It is of note that while the participants did appreciate the opportunity to engage with peers during school, experiences of bullying and stigmatization were commonly brought up as barriers at various stages of their school careers. Interestingly, a few youth expressed excitement over learning new academic subjects, particularly in the sciences, and had a clear drive for pursuing academic knowledge in the future.

Theme 6: experiences of stress and anxiety

Throughout the interviews, experiences related to anxiety and stress were consistently raised by participants. As mentioned earlier, both school and the future were identified as primary stressors; however, manifestations of anxiety and stress arose across all of the subjects discussed. In a minority of cases, participants described depression and helplessness.

Although it was challenging to directly capture stress and feelings of anxiety experienced by minimally speaking youth, such feelings could be inferred from unconventional communication (e.g. repeating words/phrases, getting up/leaving the immediate setting, and refusing to answer). For instance, after being suspended for running away, one participant repeatedly stated, “I want to go to [name of his school] March 1^st.” His father confirmed he was fixated on returning to school and resuming his regular routine, as its disruption was a source of anxiety. Furthermore, as described in an earlier account of the study (Courchesne et al., 2021), many of the minimally speaking youth provided no response or actively refused to engage in conversations related to unpleasant emotions or stressors.

In addition, many youth expressed that they did not have strategies for coping with anxiety or stress, stating they often “endure” these periods or ignore them:

Leaving these feelings unaddressed often led to helplessness and lack of control. For those who specified they had received professional help, they described it as unhelpful. Despite youth conveying a lack of coping strategies, a substantial subset of both verbal and minimally speaking youth stated that various forms of creative expressions (e.g. music, YouTube, cinema, using imagination, and drawing) were a source of comfort to them.

Discussion

The Autism Voices protocol was developed to capture the first-person perspectives of a diverse sample of autistic adolescents (Courchesne et al., 2021; Tesfaye et al., 2019). Six main themes emerged from semi-structured interviews with autistic youth in this study: (1) autistic identities, (2) thinking about the future, (3) seeking social connections on their own terms, (4) seeking autonomy, (5) school as a both a stressor and a social facilitator, and (6) experiences of stress and anxiety. Results highlight that autistic youth experience difficulties and have aspirations that are similar to their typically developing peers, which challenges many previous beliefs about autistics’ social motivation, interests, and desires. However, as described by these youth, their experience of adolescence is still made unique by their autism. Hence, the needs of autistic youth should be considered both in the context of adolescence and in the context of autism.

Including minimally speaking autistic youth

It was striking that almost none of the minimally speaking participants had access to an established communication system nor were their parents aware of the breadth of AAC options that are currently available. Only one of the participants interviewed used an AAC device, yet it was very effortful as they had to communicate by pointing to an alphabet display letter-by-letter.

The information we were able to obtain from the minimally speaking participants in such a short period of time and with minimal preparation indicates that many of them could express themselves more easily with formalized support. These participants were eager to engage in the interviews even without previous AAC experience; it is likely that they would have been able to participate even more if they had been provided with appropriate AAC devices early in their development. Families need to be made aware of AAC options as soon as possible so communication supports can be integrated across environments and activities from a young age.

Autistic identities

Most participants considered autism to be part of their identity and expressed a need for better support and acceptance from the community to help them navigate their daily lives. The youth were scientifically accurate and eloquent in describing the underlying biological differences associated with autism and how they lead to neurodiversity in their profile. These findings are in line with a recent qualitative study with autistic adults, who similarly expressed that autism was biological and value neutral, likening it to their race, handedness, or sexuality (Botha, Dibb, & Frost, 2022). Like the autistic youth interviewed, these adults viewed autism as an integral part of their identity but struggled with the negative perceptions placed upon them by society. Grappling with a disconnect between perceptions of how they view their autistic identity and societal misconceptions is found across the autistic life span. A recent study on the quality of life of autistic adults showed that the most important predictor of quality of life in this population was the experience of social stigmatization—reportedly even more impactful than autistic traits, employment status, or biological sex (Caron et al., 2021). Hence, shifting narratives that promote the stigmatization of autistic individuals (Den Houting et al., 2021), while simultaneous fostering supportive communities that embrace the multitude of autistic identities, are imperative for the well-being of autistic youth and adults.

Thinking about the future

When thinking about their future, almost all youth were able to convey what they wanted or did not want, contradicting previous accounts generalizing a lack of projection ability in autism (Hewitt, 2011). This emergent finding suggests that even minimally speaking youth with an intellectual disability are able to reflect on their future. The few youth in our sample who did not have immediate answers may simply not have had sufficient opportunities in the past to reflect on this topic. Despite the extensive work done to develop our protocol, it is also still possible that the methods we used did not allow them to fully communicate their views to the interviewer. The assumption that autistic youth are unable to reflect and plan their own future has had a detrimental impact on their involvement in making decisions about their lives. For example, a recent systematic review showed that autistic students often have minimal involvement in planning for transitions and their future (Chandroo et al., 2018). The present results confirm that autistic youth seek to plan, and should be actively involved in planning, transitions in their lives, as well as future decision making.

As noted by Chandroo et al. (2018), the investigation of a person’s interests, strengths, and preferences is a first step in seeking to ensure that autistic youth have a voice. Moreover, their interests should be considered in any planning process regarding their lives and experience, regardless of scores obtained on tests of language or intellectual ability. Reflecting on their future, participants’ consideration about practicality illustrates that many of them have a high level of awareness regarding what factors and supports may be needed when facing challenges in the future. The results emerging from the future theme, therefore, strongly support actively engaging youth across the entire spectrum in the decision-making process for their future. This will ultimately contribute to promoting self-determination and better outcomes in their adult life (Shogren et al., 2015; Wehmeyer et al., 2013).

Seeking social connections on their own terms

The emergence of social relationships as a clear theme and priority of youth indicates a strong need for both social connections and hope (and drive) to become more autonomous in their futures. These results counter the assumption that autistic people lack social motivation or do not find social connections to be rewarding (Chevallier et al., 2012). Rather, the experiences of autistic participants highlight that they enjoy having some time alone in specific contexts but that time spent with friends was of paramount importance to them. This preference mirrors the balance one might expect among typically developing youth (Adams & Berzonsky, 2008). Despite previous studies demonstrating that autistic children tend to have fewer friends and fewer reciprocal relationships (Petrina et al., 2014), many youth in this sample were not seeking a large group of friends but did want meaningful relationships with a small group of individuals who share common interests. Wanting to be accepted for who they are was commonly discussed, with some youth mentioning misconceptions about autism as a barrier to forming relationships. For some, making friends with other autistic youth was a facilitator to form safe friendships. These participants’ experiences highlight how social stigma remains a key barrier to forming lasting social relationships (Sosnowy et al., 2018; Visser et al., 2017). It also aligns with the “double empathy problem” (Milton, 2012). In the case of autism, double empathy suggests a communication gap between autistics and nonautistics that leads to a mutual disconnect of understanding one another. For instance, nonautistic people are found to have difficulties interpreting the facial expressions of autistic individuals (Edey et al., 2016; Sheppard et al., 2016), while other research has documented better rapport between the interaction of two autistic individuals compared to an autistic and nonautistic pairing (Crompton et al., 2020). The double empathy problem may be one factor underlying why participants highlighted the need to be understood and seek connections with similar peers, including autistic peers.

A few participants discussed having fewer relationships as a conscious choice, citing that they wanted to dedicate their time to school. Regarding romantic relationships, it is possible that this type of relationship adds another layer of complexity to social relationships that youth perceive would prevent them from fulfilling other duties, such as schoolwork. However, most youth expressed wanting romantic relationships in their future.

Seeking autonomy

Autistic adolescents expressed need for more autonomy, which parallels reports by typically developing adolescents during late adolescence (Adams & Berzonsky, 2008). However, the continued support that many autistic youth need to reach their desired level of autonomy is greater than the support needed for typically developing adolescents (Newman, 2007). Overcoming additional challenges toward more autonomy first requires involving autistic youth in expressing their goals and desires and requires consistent advocacy from parents and other adults (Hatfield et al., 2018; Hume et al., 2014). However, parents, teachers, and other stakeholders often feel unequipped or unsupported to adequately fulfill the transition needs of autistic adolescents (Anderson et al., 2018).

School as both a stressor and a social facilitator

Autistic youth in this study indicated school as a major stressor. The factors contributing to stress were similar to concerns raised by many typically developing youth (Pascoe et al., 2020), including feeling overwhelmed by course work, academic expectations, and evaluations. However, challenges specific to autism also emerged, which further exacerbated common issues faced by adolescents in school. For instance, youth described the school environment as being noisy and crowded, with a lack of stability (e.g. changing classrooms, teachers, and peers). Unusual sensory processing, prevalent in up to 90% of autistic individuals (Crane et al., 2009; Robertson & Baron-Cohen, 2017; Tavassoli et al., 2014), made conventional school unwelcoming for some of the youth, thus imposing a barrier to optimal learning. It was apparent that the school environment was not adapted to support the needs of those who were interviewed; in particular, many youth felt that teachers did not acknowledge their difficulties or help overcome them. Two participants described the school environment as being so unbearable that they were being homeschooled. The results confirm a critical need for teachers and other school staff to be given more resources (training, staff, dedicated time, etc.) to adequately support autistic youth within the school system (Anderson et al., 2018; Lindsay et al., 2013). Youth need to actively be listened to and involved in shaping what a safe school environment is for them. Furthermore, simple adaptations can be implemented to create a more welcoming school environment for autistic youth (e.g. smaller and more stable classrooms, regular check-ins with a support staff, and access to alternative approaches that explain course content). Autistic adolescents in this sample expressed an interest in learning and directly linked their success in school to their success in their future life. The International Classification of Functioning Disability and Health (ICF) developed by the World Health Organization suggests that disability should be conceptualized using both social and medical models of disability. While it is important to acknowledge that some barriers experienced by autistic youth in school can stem from biological differences, a social model of disability should be applied to reflect on how conventional school systems continue to construct and preserve environments that are harmful for autistic youth. For instance, the medical model of disability would assert that biological differences like unique sensory profiles impair youth’s ability to successfully integrate into a classroom environment. However, the social model of disability re-centers the impairment as stemming from society (Oliver, 1996), suggesting that diverse sensory profiles would not present as a barrier if school environments were adapted appropriately. Working with autistic youth to recognize and remove barriers in school environments is instrumental to making meaningful adaptations that foster expressed interests in learning.

While social challenges (e.g. bullying and difficulty initiating friendships) contributed to the stressors experienced within school, the majority of youth also acknowledged that they enjoyed the social opportunities provided by school. Similar to typically developing youth, spending time with friends is one of the core motivators for active school participation (Ricard & Pelletier, 2016). However, the youth noted that opportunities to create social connections were not easily accessed outside of the school environment. This limited access to social networks persists when autistic individuals graduate from school, leading to difficulties making and maintaining friendship after graduating (Friedman et al., 2013; Graetz, 2010; Mazurek, 2014). There is limited infrastructure available to facilitate rich social interactions for autistic adults, which contributes to poor integration within the community (Graetz, 2010), feelings of loneliness (Ee et al., 2019), and lower quality of life (Van Heijst & Geurts, 2015).

Experiences of stress and anxiety

Experiences related to stress and anxiety were pervasive among participants in our sample, with these challenges raised within multiple topics throughout their interviews. Youth described multiple stressful environments during their childhood where they did not feel supported or equipped to navigate them. For instance, they described feeling like they did not belong or were not understood, were being picked on, and perceived themselves to be a burden on their family or teachers. These persistent adverse environments and events (e.g. bullying) during their childhood could have a cumulative effect that may explain why the regular hurdles experienced in adolescence are often intensified for autistic youth. This is aligned with previous research demonstrating that long-lasting psychological distress and cumulative adverse events in childhood are linked to poorer mental health outcomes and maladjustment into adolescence and adulthood (Hebron et al., 2017; Heidinger & Willson, 2021). Participants in this sample who reported fewer struggles and who were largely content with their current situations tended to describe having strong family relationships and feeling supported within their communities. Participants’ accounts speak to the negative and additive effect of social stigma on autistic youth, yet our understanding of how this persistent stigma impacts their ability to successfully transition and what key protective factors contribute to their resilience in these adverse environments is lacking in autism research. This is particularly important, as experiences of stigmatization are documented across the life span in autism, leaving autistic individuals susceptible to lower self-esteem and poorer mental health (Han et al., 2022). The experiences shared by participants suggest a need to not only dismantle pervasive stigma and misconceptions but also strengthen support across multiple environmental contexts and cultivate a sense of belonging within these environments.

It was striking that most participants felt that they had little agency over their feelings of stress and anxiety. They reported having few active ways of dealing with stress and relied on passive coping by simply enduring periods of stress. This lack of coping strategies is emblematic of a gap in services that promote mental health and insufficient emotional regulation tools for autistic youth. Promising avenues to promote healthy coping strategies include drawing from and leveraging youth’s interests. Most of the youth interviewed, regardless of their verbal and cognitive abilities, were able to confidently identify what they enjoyed. Creative activities such as music, drawing, vlogging, and cinematography were overwhelmingly represented among the interests identified by participants and considered as a source of joy. Creativity-based interventions are commonly used to promote the development of various skills and to alleviate mental health issues in the general population (Abbing et al., 2018; Van Lith, 2016) and in autism (Martin, 2009; Schweizer et al., 2017). As creativity-based interests are already established and widespread, this may potentially increase both the feasibility and efficacy of such interventions, yet greater access particularly for autistic youth may be needed. Furthermore, adolescence may be a critical period for these interventions as mental health difficulties are expected to increase in prevalence within the typical adolescent period and is further exacerbated with an autism diagnosis (DeFilippis, 2018; Moseley et al., 2011).

Limitations and future directions

The sample of youth interviewed was intentionally reflective of the language and cognitive diversity within the autism spectrum. The diversity of this sample, in addition to their active participation, is a strength of this study as it validates that inclusive methods can be applied effectively when an interdisciplinary team of experts are involved. Although we were able to capture many of the perspectives shared by minimally speaking participants, a large part of our communication with them could not always be interpreted faithfully. A gap remains between the perspectives we can report for speaking youth compared to minimally speaking youth. More efforts are needed to adapt and create novel methods that are suited for each youth’s communication needs, so they can be fully heard. Autism Voices represents a step in that direction which can be built on in future research.

Our sample was composed of families who have been involved in the same longitudinal autism study for over a decade. Therefore, the participants of this sample may differ in some way from the broader population of autistic youth. Future research should further explore these differences by engaging more families with limited experience with research, especially families from underrepresented groups due to income or ethnicity. It is also of note that our research sample was based in Canada; therefore, perspectives unique to other geographical locations may not be captured. Moreover, our sample was mostly male; hence, we were unable to further explore the unique experiences of autistic females who are often underrepresented in the research field. Future research should also be mindful to document and discuss other aspects of youth’s identity, including gender identity, to enhance intersectional interpretations.

Conclusion

This Autism Voices study highlights the fact that autistic adolescents are first and foremost adolescents. Just like typically developing peers, they experience interests in forming social connections, have aspirations for their future, and desire to achieve independence. This counters misconceptions about autistic individuals, who are often portrayed as lacking motivation for social connections and having limited ability to project into the future. We hope the diversity of experiences that were shared by participants will contribute to reframing narratives about autistic adolescents and will add to previous calls advocating for autistic youth to have agency in planning their future. Furthermore, while barriers identified by the autistic participants, such as stressful school environments, bullying, and mental health issues, parallel concerns of typically developing adolescents, the lack of tailored support addressing autistic needs and the social stigmatization they experience may exacerbate the impact of these stressors and invite mitigative strategies and supports.

Based on interviews, we identified two main avenues of support that can improve the quality of life for autistic adolescents. The first is to better address the specific needs of autistic youth, including greater access to AAC systems early in development; considering them as active decision makers in planning for the future, regardless of their language or cognitive abilities; and providing access to tailored mental health services that build on their strengths and interests (e.g. creative arts). Second, relevant environments need to be made more inclusive and safer for autistic individuals, and individuals in those environments need to be empowered to support autistic adolescents (Roberts et al., 2011). This requires equipping school staff with the resources to support autistic youth throughout their academic journey, adapting school environments for various sensory and learning needs, and training other students and community members to accept and understand the diversity of autism in order to cultivate societal belonging.

Overall, Autism Voices underscores the feasibility of capturing the lived experiences of autistic individuals with various abilities. To develop this research agenda further, we encourage the academic research community to overcome assumptions that can create barriers to such research, while advancing inclusive communication methodologies and approaches. Autistic youth have unique experiences and perspectives; their voices can be amplified and need to be heard, if research is to help improve their quality of life and well-being.

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