Community Member Views on Autism Intervention: Effects of Closeness to Autistic People with Intellectual Disabilities And Nonspeaking Autistic People

Abstract

Background:

Controversy regarding the neurodiversity movement (NDM), the social and medical models of disability, autism intervention goals, and causal attributions of disability contributes to divides in the autistic and autism communities. The present study investigates the views of autistic and non-autistic autistic and autism community members on these topics. We explored whether these views are shaped by having close relationships to autistic people with intellectual disabilities (ID) and nonspeaking autistic (NSA) people.

Methods:

A total of 504 autistic and autism community members (278 autistic, 226 non-autistic) completed an online survey about theoretical models and intervention goals. Participants reported whether they had one or more close relationships with NSA people, autistic people with ID, neither, or both.

Results:

Overall, there was considerable consensus regarding desired intervention goals: normalization goals were generally opposed, while participants generally supported well-being, societal reform, supportive environment, and adaptive skill goals. While autistic participants reported less support for normalization and adaptive skills goals than non-autistic participants, they expressed somewhat more enthusiasm for societal reform and supportive environments than non-autistic people. Autistic people supported the NDM more and the medical model less than non-autistic people. Those close to autistic people with ID gave higher ratings to adaptive skill goals. On average, participants not close to autistic people with ID saw the challenges of those without ID as being slightly more due to environmental/social factors than the challenges of those with ID; there was no such statistical difference among those close to autistic people with ID.

Conclusion:

Further research investigating community views, with the inclusion of more autistic people with ID and NSA people themselves, is needed, but the results of this study suggest that the broader autistic and autism communities see NDM-consistent intervention goals as appropriate for all autistic people, including NSA people and those with ID. As autism interventions have often pursued unpopular normalization goals, this suggests directions for reform.

Community Brief

Why is this an important issue?

Disagreements about the neurodiversity movement have divided autistic people, their family members, and autism professionals. These include debates about whether the neurodiversity movement includes and represents the interests of autistic people who may have higher support needs, such as nonspeaking individuals and autistic people with intellectual disabilities. They also include debates about what goals autism interventions and supports should focus on.

What is the purpose of this study?

The purpose of this study is to explore the views of autistic and autism community members (e.g., autistic people, family members, and professionals) on: •

the neurodiversity movement,

•

the social model of disability (which views society as the source of disability-related challenges),

•

the medical model of disability (which says disabled people’s own characteristics cause disability-related challenges), and

•

different autism intervention goals.

We explored whether these views are related to whether participants were autistic and/or had close relationships with autistic people with higher support needs.

What did the researchers do?

We collected online survey responses from 504 autistic people, family members, and autism professionals. Participants shared whether they were close to nonspeaking autistic people or autistic people with intellectual disabilities. Participants answered questions about various intervention goals and their support for the neurodiversity movement and other models of disability.

What were the results of this study?

Both autistic and non-autistic participants supported the neurodiversity movement and interventions that aim to change society, create supportive environments for autistic people, and promote well-being. Both autistic and non-autistic participants generally opposed interventions trying to make autistic people more normal, but autistic people were especially unlikely to support the goals of making autistic people normal. Autistic people were less enthusiastic about the goal of teaching “useful” skills and more strongly opposed to the medical model. Autistic people were more likely than non-autistic people to support the neurodiversity movement, reforming society and creating better environments for autistic people, but these differences were not large. Participants close to autistic people with intellectual disabilities supported teaching useful skills slightly more than those not close.

What do these findings add to what is already known?

These findings further our understanding of the perspectives of autistic and autism community members on neurodiversity, models of disability, and preferred intervention goals.

What are the potential weaknesses of this study?

The participants in this study were mostly White women from North America and Europe. We obtained few responses from people who more strongly oppose the neurodiversity movement or from autistic individuals who have the highest support needs. This means that our findings do not represent all autistic and autism community members. Different participants may also have understood the idea of a “close relationship” differently.

How will these findings help autistic adults now or in the future?

These findings may be useful to autistic adults and other members of the autistic and autism communities who want to connect with others and advocate for autism intervention research that fits their shared goals. Results can help professionals to develop interventions that better match the goals of different members of the autistic and autism communities.

Introduction

Despite shared experiences that bring members of the autistic and autism communities together, such as ableism and unmet support needs, intense controversy often leaves them divided. One prevalent topic of discussion is the neurodiversity movement (NDM), which aims to advocate for the inclusion and autonomy of neurodivergent people, such as those who are autistic, attention-deficit/hyperactivity disorder (ADHD) people, dyslexic, or have other neurodevelopmental and psychiatric disabilities or neurodivergences.^1–5 Many debates focus on the question of whether or not the NDM applies to autistic people who may have intellectual disabilities (ID) or are nonspeaking autistic (NSA) people.^6–8a For example, some critics claim that the NDM’s efforts to decrease stigma and foster acceptance only benefit autistic/neurodivergent people who are not NSA people or do not have ID and that the NDM downplays the often intensive support needs of these groups and thus encourages interventions that do not prioritize them.^7,9,10 However, it appears to be possible for people to recognize challenges/difficulties experienced by autistic people and their family members, while still having positive views of autism itself, as well as of autism characteristics.^11–15

Debates regarding the NDM are often marked by conflict between proponents of the medical and social models.^10,15 The medical model of disability views neurodevelopmental disability as a consequence of individual biological makeup,^16,17 while the social model, at least in its “strong” form (compare with Crow¹⁸), postulates that disability results from environmental barriers including prejudice, ignorance, inaccessibility, and prevention of autonomy.^19–21 Many who endorse a form of the social model argue that the medical model increases stigma and dehumanization,^22,23 thus driving social barriers, such as being victimized,^24–26 being unable to attend or expelled from school,^27–29 employment issues,^30,31 and becoming unable to access physical^32–34 and mental health^35–37 care due to systemic barriers, or even being declined care due to lack of provider expertise or ableist policies.³⁸ For example, in many jurisdictions, neurodivergent people—especially those with ID—can be denied medical care when resources are needed by nondisabled people.^39,40

Neurodiversity advocacy is often associated with support for the social model.^41,42 Opponents of the NDM and social model do not agree that the challenges experienced by autistic people with ID and NSA people can be (solely) attributed to societal barriers; instead, they assert the challenges are “medical” and rooted in individual biology.^43–48 However, others contend that such arguments conflate autism with co-occurring conditions.^8,49–51 Many NDM and social model advocates claim that their philosophy is not applicable to medical issues or inherently harmful traits, such as chronic pain and illness, clinical anxiety, epilepsy, or self-injury,^49,52–55 but compare this with other authors.^19,56,57 Moreover, some conceptions of the NDM draw on social-ecological/interactionist models that recognize disability as a product of interactions between personal and environmental characteristics, with neither being solely “at fault.”^4,5,58

Conflicts have also arisen regarding which autism interventions are helpful and/or ethical. The medical model has historically guided autism research and intervention toward prevention or curing/normalization of autism.^59–62 This focus may be especially overt for young children, insofar as normalization-oriented interventions are often thought to be maximally effective earlier in brain development.^63,64 Given early plasticity, support for medical model-aligned practices could be greatest (e.g., among non-autistic parents) when intervention recipients are young. However, interventions prioritizing changing individuals and their behaviors/skills over contexts (e.g., teaching vocational skills to individuals, instead of or in addition to supporting job placements) are even common in the adult literature, as reviewed by Scott et al.⁶⁵

NDM advocates and autistic community members generally prioritize interventions promoting mental health wellness and assisting with navigation through lifespan issues over attempts to prevent or cure autism.^66–68 NDM advocates tend to particularly oppose interventions focused on normalization or elimination of harmless non-neurotypical behaviors, such as repetitive motor movements or avoiding eye contact, especially as these may serve as coping mechanisms.^69–71 Critics of efforts to prevent or cure autism express concern around diversion of resources from existing autistic individuals.^72,73 Furthermore, criticisms of normalization-oriented interventions are often fueled by reports of mental health problems, such as anxiety and trauma, said to result from them.^74–76

Nevertheless, critics of the NDM suggest it threatens autistic people with ID's and NSA people’s access to interventions and supports.^77,78 Autistic people with ID and NSA people are seriously underrepresented in intervention research,⁷⁹ and some allege that the NDM is responsible.^{10,78,80–82} However, given that autism research funding is generally allocated in alignment with medical model priorities,^68,83–86 this blame is likely misplaced. With perhaps greater reason, critics of the NDM fear loss of specific forms of intervention, such as those based on intensely controversial applied behavior analysis (ABA) principles. Many, but not all, NDM supporters see all ABA-based interventions as inherently harmful,^76,87 including for those NSA people.^88,89 In contrast, many NDM skeptics believe they are particularly essential for autistic people with ID or NSA people.^77,78 Further complicating the debate, some authors argue that ABA-based interventions can be delivered in a neurodiversity-affirmative manner,^87,90 although others consider ABA and the NDM to be inherently incompatible,^91,92 while still others feel that neurodiversity-affirming reforms to ABA are unnecessary.⁹³

Research suggests the necessity of mental health interventions for autistic people with ID and NSA people,^94–99 which from an NDM-aligned perspective, might include addressing stigma by means of societal reform. Furthermore, current diagnostic measures for mental health difficulties contain significant limitations when applied to many autistic people with ID and NSA people,^99–101 which suggests that mental health problems may not be fully understood in this subgroup. Thus, both NDM advocates and critics believe their preferred approaches are relevant to the needs of autistic people with ID and NSA people, and, given often unexamined diversities of opinion between and within pro- and anti-NDM groups, understanding—let alone resolving—these disagreements is challenging.

The present study

The purpose of this study is to increase clarity regarding the views of autistic and autism community members (e.g., autistic people, family members, and professionals) on the following potentially polarizing topics: NDM support, beliefs regarding the social and medical models of disability, autism intervention goals, including the perceived appropriateness of individual-focused compared with societally focused interventions, and opinions about whether or not disability is caused by individual or environmental attributions (causal attributions of disability). Particularly, we evaluated potential influences of whether participants identify as autistic and/or have a close relationship to one or more autistic people with ID and/or NSA people on responses. Additionally, when examining views on causal attributions of disability and the appropriateness of individual-focused and societally focused interventions, we evaluated whether or not views differ when the client involved is a child or an adult.

We assessed the following hypotheses: 1.

Autistic people will report greater endorsement of the NDM than other stakeholders. Given the NDM’s roots in autistic self-advocacy and its championship of autism acceptance, autistic people may have a larger tendency to support the NDM. This would appear consistent with findings from Kapp et al.,¹ who found that being autistic was associated with greater awareness of the NDM, positive feelings about autism, opposition to cure, and support for identity-first language. Similarly, Gillespie-Lynch et al.¹⁰² reported that being autistic was associated with greater endorsement of autism as a neutral difference and more opposition to the medical model.

When an individual is described as a young child, participants will be more likely to endorse interventions aiming to change the individual, rather than their environment, than if the individual is an adult. Because children potentially have greater opportunities to achieve clinically defined developmental outcomes and prevent later challenges in life,⁶³ relevant parties may be more supportive of early interventions, which are often aimed at individual change.

Participants will be more likely to endorse interventions aiming to change individuals if the recipient of intervention is described as having an ID. Those with ID exhibit cognitive ability scores that are definitionally more distant from “typical” than people without ID. Furthermore, ID often occurs in conjunction with other differences, such as more obvious autistic behaviors and more behaviors perceived to be “problematic.”¹⁰³ Thus, participants not inherently opposed to normalization-focused interventions may intuitively see a greater need for normalization-focused interventions for this group.

We did not form hypotheses regarding other questions of interest, such as the impacts on views of autism intervention of having close relationships with NSA people and autistic people with ID, due to a lack of relevant prior literature.

Methods

This study reports specific items assessing views on neurodiversity, models of disability, and intervention goals from a larger project about views on neurodiversity and intervention. Other items, including qualitative questions regarding the meaning of the NDM and disability models, as well as single items regarding mental health and epilepsy, are reported elsewhere.¹⁰⁴ The study also assessed matters that are not directly related to the research questions of the current article, such as terminology preferences, which are also not included in this report.

Recruitment

Ethical approval was obtained from the University of California, Davis, Institutional Review Board. Participants were recruited through online advertisements on autism-related forums, blogs, discussion lists, and social networking groups on platforms, including Facebook and Twitter (now X); the study was described as being about autism interventions and neurodiversity. Autism-related centers, organizations, and advocates in Australia, Canada, the United Kingdom, and the United States were also emailed and mailed invitations to participate and disseminate the survey. Efforts were made to recruit across the ideological diversity of the autistic and autism communities. Participants completed a virtual informed consent form before completing the survey. No compensation was provided with the exception of being entered in a randomized drawing with a 1/25 chance to win a $25 Amazon gift card.

All participants were required to be older than 18 years and have a connection to autism (self-identified [n = 278], parent or other caregiver [n = 162], other family member [n = 75], a professional [n = 122], and researcher [n = 100]). Despite the relatively low level of compensation, a large number (n = 960) of apparent fake responses were collected and removed after two coders achieved 97.60% agreement in classifying responses as valid or invalid (see Supplementary Appendix S1); the resultant final sample (n = 504) included 278 autistic and 226 non-autistic people (see Table 1). Among autistic participants, 189 reported an official diagnosis, with most being diagnosed when older than 18 (73.54%) and reporting co-occurring diagnoses (most commonly depression, anxiety, and ADHD). Overall, most participants were from the United States (n = 337); others were located in Canada (n = 55), the United Kingdom (n = 60), other European countries (n = 23), Australia and New Zealand (n = 20), South America (n = 2), the Middle East (n = 4), South Asia (n = 1), and East Asia (n = 1). Education ranged from not finishing high school (n = 7) to having a doctoral degree (n = 97), with the most common level being having a bachelor’s (n = 133) or a master’s degree (n = 168).

Table 1.

Participant Demographic Information

	Autistic (n = 278)	Non-autistic (n = 226)
Age Mean (SD)	36.15 (11.97)	41.74 (11.83)
RAADS-14 (cutoff is 14) Mean (SD)	31.94 (7.19)	8.71 (9.19)
Gender	165 female (59.35%) 41 male (14.75%) 72 nonbinary/other (25.90%)	191 female (84.51%) 32 male (14.16%) 3 nonbinary/other (1.33%)
Race/ethnicity	230 White (83.94%) 6 Hispanic/Latinx (2.19%) 4 Black (1.46%) 2 Middle Eastern/Arabic (0.73%) 2 South Asian (0.73%) 2 Indigenous (0.73%) 1 East Asian (0.36%) 1 Pacific Islander (0.36%) 22 mixed (8.03%) 4 other/not listed (1.46%)	175 White (77.43%) 14 Hispanic/Latinx (6.19%) 6 Black (2.65%) 4 Middle Eastern/Arabic (1.77%) 2 South Asian (0.88%) 0 Indigenous (0.00%) 10 East Asian (4.42%) 1 Pacific Islander (0.44%) 14 mixed (6.19%)
Close to autistic people with ID	104 (37.41%)	157 (69.47%)
Close to NSA	106 (38.13%)	146 (64.60%)

Sixty-seven autistic and 129 non-autistic participants were close to both people with ID and NSA people.

ID, intellectual disabilities; NSA, nonspeaking autistic; SD, standard deviation.

Identifying participant groups

Participants were considered close to one or more autistic people with ID if they responded “Yes” to “Have you ever been close to any (other, displayed if autistic) autistic person who has an ID?” Likewise, participants close to NSA people responded “Yes” to “Have you ever been close to any (other) autistic person who does not speak verbally/out loud?” There were also five NSA people and seven autistic people with ID among survey respondents, who were considered “close” due to their identity. Participants were also asked to elaborate on the nature of their relationships in an open-ended response. To obtain clarity and increased accuracy of what participants consider as a close relationship, the questions above were qualitatively coded, and results were used to inform a revised classification scheme for a supplementary sensitivity analysis, in which the quantitative results from the main text were replicated. See Appendix B in Supplementary Data S1 for information regarding this supplementary sensitivity analysis. Furthermore, supplementary analyses examined the frequencies of different types of relationships and compared them across groups.

Measures

For the specific items, see Appendix C in Supplementary Data S1. Internal consistency is reported in Appendix D, Supplementary Table D.2 in Supplementary Data S1.

Ritvo Autism and Asperger Diagnostic Scale-14

Participants completed this 14-item screening measure of autistic traits.¹⁰⁵ The screening cutoff score for likely autism is 14; however, given this study’s focus on political identities and critiques of screening measures,^1,106 we accepted self-identifications regardless of autistic trait levels.

Autism Intervention Attitudes Scale

Participants completed the Autism Intervention Attitudes Scale-General (AIAS-G), an adapted 35-item questionnaire¹⁰⁷ measuring perceived appropriateness of autism intervention targets through a 6-point Likert scale. In the survey, participants were asked to rate their level of support for a series of intervention objectives paired with each intervention goal. The AIAS was developed with the idea that it could be a modular and customizable measure; as used by Baiden and colleagues,¹⁰⁷ it was used to measure support for goals of early interventions. For the present study, the modified AIAS-G was developed, incorporating both individual- and ecological-focused goals, and relevant to a variety of age ranges; items were developed by autistic and non-autistic researchers based on personal and professional expertise, knowledge of autism intervention literature, and knowledge of self-advocates’ critiques of common interventions. As described below, exploratory graph analysis (EGA)¹⁰⁸ was used to define the following five intervention goal dimensions: normalization, adaptive skills, well-being, supportive environment, and social reform. Higher scores on each dimension represent greater support for those intervention goals.

NDM support

For participants who indicated they had heard of neurodiversity (97.42% yes), NDM support was measured by adapting a 5-item, 7-point Likert scale disability identification measure to focus on feelings about identifying as a supporter of the NDM.¹⁰⁹ We also administered a single item asking more directly about support for the NDM, which, after correction, yielded statistical results identical to the 5-item scale (see Supplementary Table D.3 in Supplementary Data S1).

Models of disability

Support for the medical and social models was measured using single items, only from those participants who indicated they had heard of the medical model (72.46%) or social model (68.06%), respectively.

Scenario questions: Causal attributions of disability and intervention preferences

Participants were asked whether or not the challenges of people with disabilities are caused by individual or environmental attributes, as well as the appropriateness of individual-focused interventions compared with those that are societal-focused. They were asked these same questions in four scenarios: in relation to autistic children with ID, autistic children without ID, autistic adults with ID, and autistic adults without ID.

Data analysis

The EGA was conducted on participants with complete AIAS data (n = 494) using R’s EGAnet package¹¹⁰ with polychoric correlations implemented by cor_auto in qgraph.¹¹¹ Estimation used the Walktrap algorithm and GLASSO optimization; 1000 iterations were resampled to analyze stability of the number of dimensions.

Three-way Type III analyses of variance (ANOVAs) were used to examine if closeness to autistic people with ID, closeness to NSA people, and/or self-identification as autistic (autism status) were associated with support for the NDM, models of disability, and intervention goals, with Tukey’s honestly significant difference (HSD) post hoc tests adjusted for an alpha of 0.05.

A subset of items regarding causal attributions and intervention preferences for children versus adults and people with/without ID was used to compute difference scores. Causal attribution difference scores were calculated by subtracting individual causation item responses (individual thinking/perception causing problems) from environmental causation responses (environmental factors causing problems); thus, higher scores reflect relatively more environmental causation. Intervention preference scores were obtained by subtracting normalization item responses (helping act normal as a good intervention approach) from societal reform item responses (changing the world to be more supportive as a good intervention approach); thus, similarly, higher scores reflect relatively more societal-focused intervention and less individual-focused normalization. Correlations among these items are presented in Supplementary Materials (Supplementary Table D.1). The computed difference scores were compared across these within-subject conditions and across autistic and non-autistic participants and participants who were or were not close to autistic people with ID. Results were obtained through a mixed Type III ANOVA, with one-way ANOVA post hoc tests adjusted for an alpha of 0.05.

Tukey’s Ladder of Powers was used to transform all data before ANOVAs, and all ANOVA p-values from main effects and interactions were adjusted for multiple comparisons separately for questions regarding neurodiversity and disability models, for AIAS subscales, and for questions regarding causal attributions and intervention preferences in ID/non-ID and child/adult scenarios using the false discovery rate procedure.¹¹² Refer to the caption of each table below to see the number of comparisons performed.

Results

Exploratory graph analysis

In the EGA conducted to explore the structure of the AIAS intervention goal preference measures, an item regarding flexibility and acceptance of change was removed due to relatively low classification stability (0.74). After its removal, five dimensions were found in 70.6% of iterations (95% confidence interval = 3.95, 6.05); all items had a stability of at least 0.80. Dimensions were named “normalization,” “adaptive skills,” “well-being,” “supportive environments,” and “social reform.” An item regarding removing environmental triggers of stimming behavior was initially assigned to the dimension “Supportive Environments” but deleted due to a subjective evaluation that content could overlap with the “Normalization” dimension and because endorsement of the item (mean [M] = 3.34, standard deviation [SD] = 1.62) was substantially lower than endorsement of other “Supportive Environments” items (M = 5.18, SD = 0.86). Items in each dimension are listed in Appendix C in Supplementary Data S1. Internal consistency of subscales ranged from good to excellent (Supplementary Table D.2 in Supplementary Data S1).

Relationships to NSA people and autistic people with ID

Participants described a mixture of given (family), chosen (usually friendships), and professional relationships. Some participants described more casual acquaintanceships, which were not counted as close in the supplementary sensitivity analysis (see Appendix B in Supplementary Data S1). Among those describing themselves as close, chosen relationships seemed to be more common for autistic participants; 24% of autistic and 5% of non-autistic participants had close chosen relationships with autistic people with ID, and 26% of autistic and 3% of non-autistic participants had close chosen relationships with NSA people. Conversely, professional relationships appeared more common among non-autistic participants; 54% of non-autistic and 29% of autistic participants had close professional relationships with autistic people with ID, and 56% of non-autistic and 26% of autistic participants had close professional relationships with NSA people. Compared with autistic people’s relationships, non-autistic people’s close relationships with NSA people were less likely to involve extended family; 3% of non-autistic participants and 13% of autistic participants had NSA extended family. Close relationships with autistic people with ID were more likely to involve immediate family for non-autistic participants; 29% of non-autistic participants and 14% of autistic participants had autistic people with ID in their immediate family. Further details regarding participants’ relationships can be found in Supplementary Table B.1 in Supplementary Data S1.

Autism Intervention Attitudes Scale

Non-autistic participants (M = 3.17, SD = 1.21) reported greater support for normalization-focused interventions than autistic participants (M = 2.06, SD = 1.00), with a large effect size, $η_{g}^{2}$ = 0.15, although ratings were very low overall (medians around “Slightly Disagree” to “Disagree,” respectively; Table 2; Supplementary Figure D.1 in Supplementary Data S1).

Table 2.

Effects of Autism Status (Whether Participant Is Autistic or Not), Closeness to NSA (Whether or Not Participant Reported Being “Close” to One or More NSA People), and Closeness to ID (Whether or Not Participants Reported Being “Close” to One or More Autistic People with ID) on Views Regarding Different Intervention Goals from the Autism Intervention Attitudes Scale

	Main effects						Interactions
	Autism status (autistic vs. non-autistic)		Closeness to NSA people		Closeness to autistic people with ID		ID closeness^aNSA closeness		Autism status^aID closeness		Autism status^aNSA closeness		Autism status^aID closeness^aNSA closeness
	F p ^raw p ^corrected	$η_{g}^{2}$	F p ^raw p ^corrected	$η_{g}^{2}$	F p ^raw p ^corrected	$η_{g}^{2}$	F p ^raw p ^corrected	$η_{g}^{2}$	F p ^raw p ^corrected	$η_{g}^{2}$	F p ^raw p ^corrected	$η_{g}^{2}$	F p ^raw p ^corrected	$η_{g}^{2}$
Normalization	90.00	0.156	0.00	<0.001	1.95	0.004	1.41	0.003	0.16	<0.001	3.26	0.007	1.26	0.003
	<0.001^c		0.992		0.163		0.236		0.694		0.072		0.262
	<0.001^c		0.992		0.272		0.306		0.818		0.220		0.437
Adaptive skills	60.96	0.111	1.32	0.003	7.93	0.016	<0.01	<0.001	0.59	0.001	1.95	0.004	<0.01	<0.001
	<0.001^c		0.251		0.005^b		0.999		0.443		0.163		0.991
	<0.001^c		0.930		0.025^a		0.999		0.818		0.246		0.991
Well-being	1.92	0.004	0.03	<0.001	1.98	0.004	1.35	0.003	2.47	0.005	1.67	0.003	5.15	0.010
	0.167		0.857		0.160		0.245		0.117		0.197		0.024^a
	0.167		0.992		0.272		0.306		0.585		0.246		0.120
Supportive environments	16.02	0.032	0.80	0.002	0.51	0.001	1.72	0.004	0.28	<0.001	2.92	0.006	0.04	<0.001
	<0.001^c		0.372		0.477		0.190		0.594		0.088		0.842
	<0.001^c		0.930		0.596		0.306		0.818		0.220		0.991
Societal reform	5.46	0.011	<0.01	<0.001	0.07	<0.001	4.36	0.009	0.05	<0.001	0.45	<0.001	3.18	0.006
	0.020^a		0.991		0.796		0.037^a		0.818		0.504		0.075
	0.025^a		0.992		0.796		0.185		0.818		0.504		0.188

^ap < .05; ^bp < 0.01; ^cp < 0.001.

Effects are given false discovery rate correction for five multiple comparisons (five AIAS subscales).

AIAS, Autism Intervention Attitudes Scale.

Overall, participants were much more open to adaptive skills-focused interventions (medians of “Slightly Agree” to “Agree”). Non-autistic participants (M = 5.19, SD = 0.66) demonstrated greater support for adaptive skills-focused interventions than autistic participants (M = 4.40, SD = 0.98), with a medium effect size, $η_{g}^{2}$ = 0.11 (Table 2; Supplementary Figure D.2 in Supplementary Data S1); we carried out a supplementary exploratory analysis to determine whether certain adaptive skill items drove this effect of group, but it appeared present across items, although some items were overall more often endorsed than others (Supplementary Appendix Table S4D in Supplementary Data S1). Interestingly, those close to autistic people with ID supported adaptive skills interventions (M = 4.97, SD = 0.92) more than those who were not close (M = 4.52, SD = 0.90), although this effect was small, $η_{g}^{2}$ = 0.02. Perhaps due to the small effect size, this effect was not statistically significant at the level of every item, but it was always at least trending at the item level (Supplementary Appendix Table S4D in Supplementary Data S1), suggesting this effect was also not driven by any particular item.

Participants were almost all extremely enthusiastic about well-being goals (median ratings at or close to “Strongly Agree”). After correction, no effects or interactions involving support for well-being goals were statistically significant (Table 2; Supplementary Figure D.3 in Supplementary Data S1).

Most participants also tended to agree with supportive environment goals (median ratings of “Agree” to “Strongly Agree”). Autistic people (M = 5.28, SD = 0.90) were more likely than non-autistic people (M = 5.04, SD = 0.78) to endorse making more supportive environments, but this effect was small, $η_{g}^{2}$ = 0.03 (Table 2; Supplementary Figure D.4 in Supplementary Data S1).

Participants tended to be extremely enthusiastic about reforming society (median ratings close to “Strongly Agree”). However, there was a very small autism status group difference in endorsement of societal reform, $η_{g}^{2}$ = 0.01; although there was no apparent difference between the raw mean ratings provided by autistic participants (M = 5.58, SD = 0.82) and non-autistic participants (M = 5.59, SD = 0.57), after data transformation using Tukey’s Ladder of Powers, as described in the Methods section, autistic people appeared to be, on average, slightly more enthusiastic about societal reform than non-autistic people (Table 2; Supplementary Figure D.5 in Supplementary Data S1). This effect was replicated when conducting a Wilcoxon Mann–Whitney ordinal test (p = 0.049).

NDM support

Participants usually identified themselves as supporters of the NDM (median ratings around “Agree” on the 5-item NDM support scale). After correction, autistic people (M = 5.75, SD = 1.33) were more likely than non-autistic people (M = 5.37, SD = 1.50) to identify as NDM supporters, at a small effect size, $η_{g}^{2}$ = 0.028, but there were no effects or interactions involving closeness to NSA people and autistic people with ID in relation to identification with the NDM (Table 3, Supplementary Figure D.6 in Supplementary Data S1).

Table 3.

Effects of Autism Status (Whether Participant Is Autistic or Not), Closeness to NSA (Whether or Not Participant Reported Being “Close” to One or More NSA People), and Closeness to ID (Whether or Not Participants Reported Being “Close” to One or More Autistic People with ID) on Support for the NDM, Support for the Medical Model of Disability, and Support for the Social Model of Disability

	Main effects						Interactions
	Autism status (autistic vs. non-autistic)		Closeness to NSA people		Closeness to autistic people with ID		ID closeness^aNSA closeness		Autism status^aID closeness		Autism status^aNSA closeness		Autism status^aID closeness^aNSA closeness
	F p ^raw p ^corrected	$η_{g}^{2}$	F p ^raw p ^corrected	$η_{g}^{2}$	F p ^raw p ^corrected	$η_{g}^{2}$	F p ^raw p ^corrected	$η_{g}^{2}$	F p ^raw p ^corrected	$η_{g}^{2}$	F p ^raw p ^corrected	$η_{g}^{2}$	F p ^raw p ^corrected	$η_{g}^{2}$
NDM support	13.86	0.028	1.49	0.003	0.10	<0.001	5.33	0.011	0.10	<0.001	4.1	0.009	1.42	0.003
	<0.001^b		0.223		0.755		0.021^a		0.754		0.041^a		0.234
	<0.001^b		0.426		0.755		0.063		0.754		0.123		0.437
Medical model support	15.16	0.041	0.98	0.003	0.88	0.002	3.26	0.009	0.47	0.001	0.07	<0.001	1.12	0.003
	<0.001^b		0.323		0.349		0.072		0.493		0.785		0.291
	<0.001^b		0.426		0.524		0.108		0.740		0.785		0.437
Social model support	0.59	0.002	0.64	0.002	2.18	0.007	1.72	0.005	0.63	0.002	1.06	0.003	<0.001	<0.001
	0.443		0.426		0.141		0.190		0.426		0.305		0.976
	0.443		0.426		0.423		0.190		0.740		0.458		0.976

^ap<0.05; ^bp<0.001

Effects are given false discovery rate correction for three multiple comparisons (NDM support, medical model support, and social model support).

NDM, neurodiversity movement.

Models of disability

Enthusiasm for the medical model was low, with median ratings of “Oppose” to “Slightly Oppose.” After correction, autistic people (M = 2.28, SD = 1.22) were more likely to oppose the medical model than non-autistic people (M = 2.97, SD = 1.34), at a small effect size, $η_{g}^{2}$ = 0.041, but there were no effects or interactions involving closeness to NSA people and autistic people with ID in relation to support for the medical model (Table 3; Supplementary Figure D.7 in Supplementary Data S1).

Support for the social model was much higher (median ratings around “Support”), but no effects involving the social model were observed (Table 3; Supplementary Figure D.8 in Supplementary Data S1).

Scenario questions: Intervention preferences and causal attributions of disability

Items used to compute each difference score in each condition were significantly associated with each other, all uncorrected p ≤ 0.004 (Supplementary Table D.1 in Supplementary Data S1).

Causal attributions of disability

There was a main effect of autism status on whether participants attributed disability to individual or environmental characteristics, with autistic participants endorsing relatively more environment-focused and less individual-focused causal ideas (M = 2.40, SD = 1.99) than non-autistic participants (M = 1.53, SD = 1.83) (Table 4, Supplementary Figure D.9 in Supplementary Data S1). This was driven both by more environmental attributions and by less individual attributions (Supplementary Figure D.5 in Supplementary Data S1). The effect size was fairly small, $η_{g}^{2}$ = 0.04.

Table 4.

Effects of Autism Status (Whether Participant Is Autistic or Not), Closeness to ID (Whether or Not Participants Reported Being “Close” to One or More Autistic People with ID), Whether or Not the Scenario Featured a Person with ID, and Whether or Not the Scenario Featured a Child or an Adult, on Support of Individual-Focused Versus Societal-Focused Interventions (Intervention Preferences) and Whether or Not Participants Believe Disability Is Caused by Individual or Environmental Attributions (Causal Attributions)

	Causal attributions			Intervention preferences
	F	P ^raw p ^corrected	$η_{g}^{2}$	F	P ^raw p ^corrected	$η_{g}^{2}$
Autism status (autistic vs. non-autistic)	22.65	<0.001^b	0.04	31.00	<0.001^b	0.055
		<0.001^b			<0.001^b
Closeness to autistic people with ID	0.152	0.697	<0.001	0.06	0.801	<0.001
		0.801			0.801
ID scenario versus non-ID scenario	14.13	<0.001^b	0.002	0.17	0.683	<0.001
		<0.001^b			0.683
Child scenario versus adult scenario	3.76	0.053	<0.001	0.08	0.784	<0.001
		0.106			0.784
Autism status × ID closeness	2.22	0.137	0.004	1.19	0.276	0.002
		0.274			0.276
Autism status × ID scenario versus non-ID scenario	4.67	0.031^a	0.001	1.18	0.278	<0.001
		0.062			0.278
ID closeness × ID scenario versus non-ID scenario	9.74	0.002^b	0.001	0.75	0.388	<0.001
		0.004^b			0.388
Autism status × child scenario versus adult scenario	2.19	0.139	<0.001	0.04	0.835	<0.001
		0.278			0.835
ID closeness × child scenario versus adult scenario	0.10	0.752	<0.001	0.17	0.684	<0.001
		0.752			0.752
ID scenario versus non-ID scenario × child scenario versus adult scenario	6.12	0.014^a	<0.001	3.31	0.069	<0.001
		0.028^a			0.069
Autism status × ID closeness × ID scenario versus non-ID scenario	0.12	0.729	<0.001	1.03	0.310	<0.001
		0.729			0.620
Autism status × ID closeness × child scenario versus adult scenario	0.02	0.903	<0.001	0.79	0.374	<0.001
		0.903			0.748
Autism status × ID scenario versus non-ID scenario × child scenario versus adult scenario	0.35	0.556	<0.001	0.15	0.699	<0.001
		0.699			0.699
ID closeness × ID scenario versus non-ID scenario × child scenario versus adult scenario	2.88	0.090	<0.001	0.13	0.715	<0.001
		0.180			0.715
Autism status × ID closeness × ID scenario versus non-ID scenario × child scenario versus adult scenario	3.50	0.062	<0.001	1.99	0.159	<0.001
		0.124			0.159

^ap < 0.05; ^bp < 0.01.

Effects are given false discovery rate correction for two multiple comparisons (causal attributions vs. intervention preferences).

Furthermore, there was a very small main effect of whether or not the scenario specified a presence of ID, $η_{g}^{2}$ = 0.002, but there was also an interaction between this factor and participants’ closeness to autistic people with ID (Supplementary Figure D.10 in Supplementary Data S1, left panel). According to follow-up analyses, among those close to people with ID, responses to the ID scenario (M = 1.87; SD = 1.92) did not differ from responses to the non-ID scenario (M = 1.89, SD = 2.09), F(1,242) = 0.22, p^corrected = 0.68. However, among those not close to people with ID, participants saw relatively less environmental causation in the ID scenario (M = 1.99, SD = 1.86) than the non-ID scenario (M = 2.34, SD = 1.96), F(1,233) = 21.90, p^corrected < 0.001.

In addition, there was a two-way interaction of whether scenarios were about someone with ID and whether or not the scenario pertained to a child or an adult, although the effect size was minute, $η_{g}^{2}$ < 0.001 (Supplementary Figure D.10 in Supplementary Data S1, right panel). When questions asked about someone without ID, causal attributions did not differ for children (M = 2.10, SD = 2.05) versus adults (M = 2.13, SD = 2.02), F(1,475) = 0.17, p^corrected = 0.68, but when questions asked about someone with ID, participants reported that the environment had a larger role in the challenges of adults (M = 1.99, SD = 1.88) than for children with ID (M = 1.86, SD = 1.91), F(1,483) = 8.41, p^corrected = 0.008. This effect appeared to be driven by more environmental attribution, not less personal attributions (Supplementary Table D.5 in Supplementary Data S1).

Intervention preferences

There was a main effect of being autistic on how participants responded to within-subjects questions about individual-focused versus societal-focused interventions (Table 4, Supplementary Figure D.11 in Supplementary Data S1; see also Supplementary Table D.5 in Supplementary Data S1); autistic participants endorsed modestly, $η_{g}^{2}$ = 0.055, more environment-oriented and less normalization-oriented interventions (M = −0.13, SD = 2.07) than non-autistic participants (M = −1.18, SD = 2.13). Aside from this effect, no other significant main effects or interactions were found.

Discussion

What intervention goals do autistic and autism community members think should be emphasized?

Overall, intervention goals focused on normalization were deemed inappropriate by most participants, reflective of the many criticisms against normalization-focused interventions.^74–76 This finding dovetails with recent findings that autistic and autism community members prioritize quality of life and self-determination rather than normalization in interventions for young children.^107,113,114 Autistic participants were considerably more strongly opposed to normalization than non-autistic participants, which was expected given the many criticisms autistic advocates themselves have made against normalization,^69–71 and a similar finding by Gillespie-Lynch et al.,¹⁰² but there appeared to be general consensus against normalization in the entire study sample that may reflect the growing awareness of—and resultantly greater alignment with—the NDM.¹

Non-autistic participants also expressed robustly more support for intervention goals focused on adaptive skills than did autistic participants, contrasting with the lack of differences between autistic and non-autistic participants in support for adaptive skills interventions reported by Kapp et al.¹ Supplementary analyses confirmed that these group differences were not driven by any specific item (such as adaptive skill items that, at face value, might seem to be normalization-adjacent, such as improving conversational ability); autistic people were slightly more wary of all adaptive skill goals. However, in sharp contrast to normalization goals, the goal of teaching adaptive skills appeared generally acceptable to both autistic and non-autistic participants (average scores around Slightly Agree to Agree).

Interestingly, adaptive skill intervention goals were rated slightly more positively by those considering themselves to have close relationships with autistic people with ID than those not close to autistic people with ID. This effect was also driven by a wide variety of items, including promotion of communication skills, interpersonal skills, and toileting, as well as reduction of dangerous behaviors. This greater emphasis on adaptive skills is not necessarily surprising given that adaptive functioning levels assessed as being substantially less than typical “norms” are considered part of the definition of ID,¹¹⁵ and given that adaptive difficulties¹¹⁶ and the necessity of adaptive skills in general have consistently been acknowledged by neurodiversity advocates,¹¹⁷ participants close to autistic people with ID may simply have been particularly cognizant of the necessity to support the development of such skills.

Intervention goals focused on promoting well-being (e.g., quality of life and mental health) appeared to be highly acceptable to most participants. Indeed, neurodiversity activists have long championed quality of life and well-being as primary goals.^13,55,73 Notably, this included both autistic and non-autistic participants, whose ratings did not appear to statistically differ from one another, suggesting that agreement on well-being could be an important area of consensus. Given the dearth of community mental health supports for autistic people,^35,37 and especially for autistic people with ID,^96–97 this suggests an important priority for action.

Societal reform (e.g., educating non-autistic people about communicating with autistic people) and supportive environment (e.g., removing problematic environmental stimuli and triggers) intervention goals were well-endorsed overall (averages of Agree to Strongly Agree), especially among autistic people. However, despite the consensus in favor of ecological change and societal reform evident in this study, autism intervention research has ignored these goals¹¹⁸ until quite recently.¹¹⁹

Crucially, closeness to NSA people did not significantly influence any intervention goal preferences, and closeness to autistic people with ID did not have any apparent effect on support for normalization, well-being, societal reform, or supportive environment goals. This lack of differences may suggest that, despite ID and NSA people being topics of controversy for the autistic and autism communities, they may not be at the root of debate pertaining to the overarching direction and aims that should be pursued by autism interventions.

What are autistic and autism community members’ views on the NDM and the medical model?

Although our participant pool was largely composed of participants whose ratings indicated they self-identified as NDM supporters, we still observed that autistic people were, collectively, modestly more enthusiastic about the NDM than non-autistic people.¹ This was consistent with our hypothesis. Furthermore, although support for the medical model of disability was quite low overall (median ratings of Disagree to Slightly Disagree), autistic people tended to be somewhat more strongly opposed to it than non-autistic people.¹⁰² However, these modest group differences should not detract from the overall strong agreement between autistic and non-autistic people’s responses regarding the NDM and models of disability.

Importantly, although debates about the NDM and models of disability are often represented as though they are primarily about heterogeneity and the welfare of autistic people with ID and NSA people,^10,120,121 we found no statistically reliable effects of closeness to NSA people and autistic people with ID on support for the NDM or the medical model. Indeed, autistic children’s support needs and the obviousness of their autistic traits do not lower parents’ positive emotions toward them and acceptance of their autism.¹³

The limited influence of closeness to autistic people with ID and NSA people on views on most intervention goals, the NDM, and models of disability stands in contrast to framings of key autism-related debates as being primarily about heterogeneity.¹⁰ However, although some NSA advocates have expressed serious concerns about being marginalized from aspects of the NDM and mainstream autistic advocacy,^122,123 they also emphasize the dangers and harms of traditional approaches to disability and traditional interventions.^122,124,125 Parents of autistic individuals with ID and of NSA people have expressed both pro-¹²⁶ and anti-¹²⁷neurodiversity views, emphasizing the plurality of perspectives regarding these issues. Some key divisions may even relate to nuances of terminology; for example, the degree of ID and lack of language are folded into the idea of autism under the proposed term “profound autism,” whereas from a pro-neurodiversity perspective, these are considered distinct and co-occurring.^51,128 Similarly, neurodiversity advocates and autistic people with high community connectedness oppose functioning labels not despite the complex diversity of autistic people but because of it.^51,129,130 Other issues such as power dynamics, economics of intervention and support, and simple group polarization might help to account for debates.^1,102 Thus, while further research is clearly necessary to understand the perspectives of autistic people with ID and NSA people, as well as their caregivers and supporters, these findings suggest that there is a danger of exaggerating the centrality of heterogeneity in cognitive and language abilities to tensions within the broader autistic and autism communities.¹⁰²

What do autistic and autism community members believe are the causal roots of disability?

As expected, autistic participants, on average, appeared to attribute the cause of disability relatively more to environmental factors over individual factors when compared with non-autistic participants. This is consistent with our finding that autistic participants endorsed less person-oriented intervention than non-autistic participants, although we did not observe any differences in autistic and non-autistic people’s support for the social model of disability. Importantly, though, only participants not close to autistic people with ID were more likely to see the challenges of those without ID as being more due to environmental/social factors than the challenges of those with ID; on average, those close to people with ID saw no such difference. This implies that closeness to people with ID might highlight individual characteristics that could be disabling regardless of social context and reduce participants’ enthusiasm for “strong” conceptions of the social model of disability. However, recognizing how autism with ID could be disabling, regardless of the social context, might then lead participants to recognize traits in autistic people without ID that could also be disabling even if society was markedly reformed,¹⁵ such as vulnerability to sensory overloads or executive dysfunction (e.g., recognizing these traits as disabling might be easier if someone has already become skeptical of the aspects of the social model, reducing any bias to seek only evidence consistent with the social model).^131,132 Thus, just as ID or NSA traits may not be key factors driving community members’ views on appropriate intervention goals at the broad, somewhat abstracted level examined in this study, they may not be a crucial factor influencing opinions on the causal origins of disability. Notably, after correction, we did not observe any statistically reliable effects of closeness to NSA people or autistic people with ID on support for the social model of disability.

Nevertheless, interestingly, when participants were exposed to scenarios that featured people with ID, they felt that the environment, relative to individual characteristics, had a slightly larger role in the challenges of adults with ID compared with children with ID. This may be due to the lack of resources for adults with ID to navigate employment issues,¹³³ health care issues,¹³⁴ bereavement,¹³⁵ and other problems that could become increasingly prevalent with age.¹⁰³ It could also be that participants may have greater exposure to how difficult the adult world can be for autistic people, especially those with ID, or that children are more malleable in development than adults.⁶³

Limitations and future directions

Despite the strengths of this study, there were several limitations. Due to several factors, the participant pool in this study is not as diverse as hoped for. The survey primarily represents White autistic and non-autistic women from the United States. This is not surprising, since autistic women are often overrepresented in online studies.^136,137 Importantly, most participants were diagnosed in adulthood and did not identify as a person with ID or who is nonspeaking, and their opinions of autism intervention goals for children are unlikely to be based on personal experience. Future research should target a broader and more representative sample of autistic adults.

We also received many responses from apparent study scammers, and it is possible that despite our high reliability in removing fake responses (see Appendix A in Supplementary Data S1), some fake data may have been retained in this article, and some real data deleted from it.

Recruiters diligently tried to disseminate the survey to people who were clearly anti-NDM and against the social model, yet responses from the NDM opponents remained limited. This may reflect the increasing strength of the NDM in today’s autistic and autism communities, at least in countries such as the United States, United Kingdom, Australia, and Canada (see Kapp⁴⁹) as awareness of the movement has spread¹ although not necessarily in all cultural contexts (see Schulz¹³⁸ and Cheng at al.¹³⁹). However, NDM opponents may have been less likely to participate because the study was advertised as being about views on neurodiversity, or because they were familiar with and distrustful of the pro-neurodiversity positionality of some research team members and our social networks. The subjective impression of the research team was that these factors likely reduced engagement from NDM skeptic/opponent circles.

Effects of different professional roles (e.g., occupation) were not examined. It is possible that autism professionals from different fields, perhaps due to differences in their training or the type of interventions they use in their own work, could tend to have different opinions regarding goals. Future research should explore the roles these factors play in shaping perspectives.

Autistic people’s perspectives have historically been underrepresented in autism research; many studies having been conducted by non-autistic researchers who did not seek or consider feedback from autistic people.^72,140 This is despite demands of autistic self-advocates to use their insider experiences to remediate challenges involving the autistic and autism communities.¹⁹ A considerable number of autistic people were a part of this study, but this study still had few NSA people and autistic participants with ID themselves. As such, this study focuses on how others view autistic people with ID and NSA people, which inadvertently reproduces the exclusion of the lived experiences, perspectives, and advocacy of autistic people with ID and NSA people from autism research,⁷⁹ and, importantly, reinforces the notion that autistic people with ID and NSA people cannot make self-determined choices.¹⁴¹ Given this, it is important for future studies to attempt greater inclusivity in gathering perspectives on important issues from autistic people with ID and NSA people; some researchers have already highlighted this need.^142,143 Strategies for doing this could include, for example, communicating through participants’ preferred communication modalities; plain language (with clarifications as needed); cognitive interviews and pilot tests; adapting instruments, having a real-aloud option for the text¹⁴⁴; use of pictures; utilizing creative data collection methods (e.g., PhotoVoice)^{141,145–147}; allowing support people; monitoring nonverbal cues; allowing adequate time to collect manageable volumes of data; carefully attending to power dynamics and social desirability/demand characteristics; and in general, flexibly adapting to the needs of participants in the moment.^141–148 Furthermore, although some NSA people and autistic individuals with ID may be unable to communicate political views even with such adaptations, monitoring affect and offering choices can still provide meaningful information about preferences regarding intervention practices and other topics.^149,150 Participatory partnerships can facilitate ethical and inclusive research with marginalized populations, such as NSA people and autistic people with ID.^151–154

A number of participants, in their open-ended responses, felt the term “close” (as used in questions about relationships with NSA people and autistic people with ID) was ambiguous. While we wished to allow community members some flexibility in describing relationships as “close” or not, we did conduct a supplementary analysis using participants’ qualitative descriptions of their relationships to more consistently set the criteria for “closeness.” NSA people and autistic people with ID are also highly heterogeneous populations, and NSA people and those with ID can differ greatly in their support needs.¹⁵⁵ Thus, this study’s focus on ID and NSA traits as being related to high support needs oversimplifies a complex reality. This includes autistic individuals who may have other traits (e.g., significant self-injurious behaviors) that would fall under this group.

Several participants appeared to differ in their definition of nonspeaking autism, some using the term synonymously with selective mutism or general speech difficulties; some participants clarified that the person used to be nonspeaking but no longer is. Even research definitions of terms such as “nonverbal” and “minimally verbal” are often inconsistent across studies,^156,157 and it seems reasonable to expect that community understandings might be even more diverse. In answers to the open-ended questions described above, a couple of participants who had one or more relationships with autistic people with ID mentioned difficulties with ID diagnosis due to its inaccuracy in children younger than five years; misdiagnosis or suspected diagnosis was also mentioned. It is well-established that accurately characterizing cognitive abilities in autistic people can be difficult, particularly in those with ID and limited communication abilities.¹⁵⁸ Future studies should either more clearly define relevant terms, or provide more specific questions to clarify how participants interpret the terms (e.g., asking additional questions about what methods they use to communicate and how frequently and fluently they use those methods to communicate). Given the diversity present among NSA people and those with ID, this could provide much more nuanced insights.

Moreover, supplementary analyses suggested the autistic and non-autistic groups differed in the types of relationships participants most frequently had to NSA people and autistic people with ID (Appendix B in Supplementary Data S1). Autistic participants more often had friendships with people in both groups, acquaintanceships with people with ID, and nonspeaking extended family members; in contrast, non-autistic participants more often worked in the helping professions supporting clients in both groups, and were also more likely to have immediate family members with ID. Future research should explore whether and how the specific type of relationship participants have shaped their views.

In addition, this study leaves much ground unexplored. For example, this study focuses on neurodiversity, models of disability, and intervention goals, but endorsement of a goal does not necessarily mean community members would endorse methods used to pursue it. Some studies have begun to explore autistic community views on intervention methods,^114,159,160 but that literature is not yet extensive.

Conclusion

Overall, this study found fairly few differences in perspective between participants who did/did not describe themselves as having close relationships to NSA people and autistic people with ID. Those who were close to autistic people with ID were more likely to support adaptive skills intervention goals, but this was a small effect. Otherwise, participants appear to have seen the same broad categories of intervention goals as equally appropriate regardless of their closeness to autistic people with ID, as well as their closeness to NSA people. Normalization interventions were widely opposed, but participants generally expressed support for the goals of teaching adaptive skills, reforming society, making environments more supportive/inclusive, and promoting well-being. Participants in this sample generally supported the NDM, and, at least among those familiar with the social and medical models, participants tended to support the social model and opposed the medical model.

Differences between autistic and non-autistic participants were somewhat more robust than those based on closeness to NSA people and those with ID but still generally modest overall. The largest differences concerned normalization and adaptive skills intervention goals; autistic people more strongly opposed normalization-oriented intervention goals and were also more cautious regarding promoting adaptive skills. However, even these larger effects should be considered in their larger context, with overall low support for normalization and greater support for adaptive skills goals in both participant groups. Autistic people were also slightly more enthusiastic about the NDM, societal reform, and making supportive environments and slightly more opposed to the medical model of disability. Nevertheless, the modest size of most of these effects may suggest a possible emerging community consensus around broad priorities for autism intervention goals. As autism intervention research has often aimed at normalization, and relatively few studies have prioritized societal reform, this suggests that considerable changes are needed to bring intervention research priorities into line with community members’ preferences.

Footnotes

Acknowledgments

The authors warmly thank their participants for taking the time to take part in this study.

Authorship Confirmation Statement

This article is an edited version of L.H.’s honors thesis. P.D., S.K.K., K.G.-L., and S.M.R. designed this study. Recruitment was conducted by S.K.K., P.D., and K.G.-L. P.D. and D.S.C. coded and removed invalid data. Qualitative data regarding the closeness of relationships were coded by L.H. and S.S.-H., with feedback regarding the coding scheme being provided by all authors. L.H. and P.D. conducted the quantitative analysis. This article was drafted by L.H., with contributions from P.D. and other authors (e.g., A.N.G. drafted the Community Brief). The article was edited and approved by all the authors.

Author Disclosure Statement

None of the authors has any conflicts of interest to declare.

Funding Information

The cofirst authors’ time was partly supported by a UC Davis Dean Keith Simonton Award (L.H.) and an Autism Speaks/Royal Arch Masons fellowship (P.D.). Study funding was provided by the UC Davis MIND Institute.

Supplementary Material

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