“It Was a Completely Different Lens”: Autistic Adult and Parent Perceptions of Autistic-Led Autism Information Workshops

Abstract

Research shows that when autistic people mentor and share information about autism with other autistic individuals, it provides benefits. However, researchers are yet to determine whether parents of autistic children benefit from learning about autism directly from autistic people. Autistic people leading information workshops for parents of autistic children are an emerging practice. In this coproduced study, researchers used a mixed-methods approach to examine the perceptions of 12 parents of young autistic children and 7 autistic adults who participated in, or facilitated, three 2-hour autism information workshops. Quantitative survey results showed that parents were generally satisfied with the workshops, but some would have liked more time. The qualitative findings suggest that the workshops fostered a more positive narrative around autism. The workshops helped build connections both within and across groups for the autistic adults, the parents, and their autistic children. The workshop’s “cosy” nature helped participants to feel comfortable in sharing their experiences and questions. Participants expressed a preference or desire for a diverse range of facilitators. These results highlight the important role that autistic adults could play in supporting and sharing information with parents of young autistic children.

Community Brief

Why was this program developed?

It can be helpful for autistic people to provide support and information about autism to other autistic people. It might also be helpful for parents of autistic children to learn about autism directly from autistic people. We developed this program to explore the potential benefits of autistic-led workshops for parents of autistic children, as well as for the autistic individuals delivering the workshop. Research is needed to understand how such workshops can impact both groups.

What does this program do?

Autistic-led information workshops for parents of autistic children may improve parental understanding of neurodiversity and autistic people. These workshops provide a safe and open space where autistic people deliver content and share their personal experiences of being autistic. The workshops include a presentation about autism, opportunities for sharing experiences, and time for parents to engage directly with autistic facilitators.

How did the researchers evaluate the new program?

In this study, autistic and non-autistic researchers worked together to understand what people think about the workshops. Twelve parents of young autistic children participated as workshop attendees, and seven autistic adults participated as workshop facilitators. The research used surveys and interviews to gather feedback.

What were the early findings?

Parents and autistic adults generally liked the workshops, though some thought they were too short. They shared that the workshops helped parents to think more positively about autism. Autistic people and parents liked the connections that they made in the workshop and appreciated the “cosy” environment. They also cared about whether the autistic facilitators resembled the children of the parents attending the workshops.

What were the weaknesses of this project?

The study involved only 12 parents and 7 autistic adults. This means we don’t know if the findings are applicable to other autistic people and parents.

What are the next steps?

The next steps are to evaluate the workshops with more autistic adults and parents/families of autistic children. It would also be helpful to evaluate perceptions of workshops that are longer or a series of workshops.

How will this work help autistic adults now or in the future?

Our findings suggest that autistic adults liked delivering the workshops and that these workshops could be helpful for parents of autistic children. In the future, such workshops could become more widely available, empowering autistic adults to continue to share their knowledge and lived experience.

Introduction

Researchers have characterized autism by differences in social communication, information processing, and preferences for routine.¹ Historically, autism has been understood as something to be “fixed” or cured.^1-3 Thus, autistic people have often been required to adapt to “neurotypical” expectations. In line with the growing neurodiversity movement, autism is now viewed as a brain-based difference.^3,4 Autistic people are understood to have their own unique strengths, challenges, and support needs, and society should adapt to accommodate them. There is also increasing awareness of the importance of autistic-to-autistic relationships and enabling autistic people to learn from and support one another.^{5B6 -8}

Emerging evidence suggests that autistic people benefit from serving as mentors or peer supports to one another. Most research has focused on non-autistic individuals providing such support to autistic people.^9-11 However, autistic-to-autistic mentor–mentee and peer support relationships may offer particular advantages through shared experience and greater ease of communication.^8,12 Autistic young adults in a study by Crompton et al.⁷ felt that support from other autistic students during high school would have been beneficial but showed no desire for support from non-autistic students. Two studies have reported benefits for autistic mentors and mentees including improvements in confidence, self-esteem, relationships, well-being, and life and social satisfaction.^8,13

Traditionally, autistic people have been excluded from producing autism research.^14-16 Participatory autism research varies in how researchers share power with the community.^16,17 Arnstein’s Ladder of Citizen Participation¹⁷ illustrates this continuum of involvement, ranging from tokenistic consultation to community control, with increasing power and autonomy for the community at each step. This highlights growing recognition of the value of community input at all levels of research. Research–community partnerships improve the relevance and acceptability of support programs and enhance the overall quality of the research process.¹⁸ It is logical and important to coproduce evaluations of autistic-led information sharing, given the key role that autistic people play in developing and delivering the content.

Autistic people are increasingly considered experts on autism due to their lived experience; however, it remains rare for them to have the opportunity to share this expertise with others. Two studies have examined the effects of autistic children¹⁹ or adults²⁰ learning about autism from autistic people. Sixteen autistic adults who participated in Exploring Being Autistic, a 10-week peer-group program, appreciated that it was autistic-led and felt that it helped them to develop a positive outlook on autism.²⁰ Sixty-three children aged 8–14 who participated in NeuroBears, an online, autistic-led, psychoeducation course, generally showed improvements in their knowledge and understanding of autism and a more positive view of being autistic.¹⁹ Gillespie-Lynch et al.²¹ found that a codesigned/participatory autism training was more effective in improving autism knowledge, promoting inclusion, and reducing stigma than a nonparticipatory training. Although these studies highlight the potential benefits of autistic-led and codesigned programs, researchers must also consider possible risks. Crompton et al.⁶ emphasize that peer support facilitators may experience emotional strain and recommend careful planning, training, and supervision to prevent burnout.

Autistic people could also play a valuable role in educating parents of autistic children. By sharing their lived experiences, autistic people could help parents gain a deeper understanding of what it means to be autistic. Although researchers have extensively studied the benefits of parent autism education programs delivered by non-autistic people,^22-24 no research appears to have evaluated autistic-led parent education programs.

Emerging Practice

Autistic-led information workshops for parents of autistic children may improve parental understanding of neurodiversity and autism. In these workshops, autistic adults facilitate, while parents of autistic children participate as attendees. The workshops provide a safe, open space for autistic facilitators to deliver content and share experiences of being autistic. A team of —two to three autistic adults leads each one-off 2-hour workshop. A facilitator helps to ensure that the workshop runs smoothly. Each workshop includes —three to four parents of autistic children as attendees and takes place in a comfortable environment, with a kitchen and a screen for displaying the PowerPoint presentation. The set structure of the workshops includes a psychoeducation component, where parents learn about autism from a neurodiversity-affirming perspective, including considerations around terminology and a nonlinear view of the strengths, challenges, and support needs of autistic children.^3,4 Then the autistic facilitators and parents share their own lived experiences. Finally, parents direct questions to the autistic facilitators, who each decide whether to answer based on their comfort level. These questions pertain to further information about autistic adults’ experiences and advice based on these experiences. In this study, we refer to participants as “autistic adults” and “parents of autistic children.” We recognize that autistic individuals can be parents, and some parents in our sample may have been autistic. We did not collect parent diagnostic information, as our focus was on perceptions of the workshops rather than diagnostic status.

Evaluation Methods

This study is the first, to our knowledge, to examine autistic-led autism information workshops for parents of autistic children. The research team collaboratively developed the research question: “What are autistic adult and parent perceptions of autistic-led autism information workshops?” We used semi-structured interviews and pre- and post-surveys to examine autistic adult and parent perceptions of three separate autism information workshops. Autistic and non-autistic team members coproduced the study. Some of these autistic researchers also designed the training, facilitated at least one workshop, and participated in the research as participants (see “Participants” section). We interviewed both parents and autistic adults. Parents described how the workshops influenced their understanding of autism and shaped their parenting approaches. Autistic adults shared their perspectives on the facilitation process, their experiences of sharing their expertise, and their observations of parent learning and engagement. By including both viewpoints, we evaluated the workshops’ effectiveness from multiple perspectives and identified opportunities for future development. We positioned this at the “coproduction” level of participatory autism research.¹⁶ Autistic and non-autistic researchers jointly agreed on the topic, design, and methodology of the research and were involved in implementation and evaluation.

Ethical clearance

The Victoria University of Wellington Human Ethics Committee (#30180) granted ethical approval. Participants provided informed consent to participate. Their participation was voluntary and confidential, and they were able to withdraw at any point. Autistic Adult (AA) 7 completed a tailored, easy-to-read consent form supported by a member of the research team (H. Waddington).

Participants

Nineteen people participated in this research, including 12 parent attendees and 7 autistic adult facilitators. We recruited parents through the Victoria University of Wellington Autism Clinic database. AAs 1, 2, and 3 were members of the clinic’s advisory group and codesigned these workshops. AAs 1 and 3 had prior research experience on unrelated projects. The research team recruited four additional autistic adults through existing connections. Family members could participate if they had a child aged under 13 years who had been diagnosed as autistic for at least 6 months to ensure that parents had some time to process their child’s autism diagnosis prior to attending.

Most of the 12 participating parents were mothers, European New Zealanders, and had at least an undergraduate degree (see Table 1 and Supplementary Table S1). Two couples (each a mother and a father) attended Workshops 2 and 3, respectively. We report child demographics for the 10 autistic children of the 12 attending parents. These children were aged between 3 and 7 years, were mostly male, and were diagnosed as autistic from 3 years of age. Five of the children were also diagnosed with global developmental delay and two with attention-deficit/hyperactivity disorder.

Table 1.

Demographic Characteristics for Participating Parents and Their Children Across All Workshops

Characteristics	Alln (%)
Parent (n)	12
Role
Mother	8 (75%)
Father	4 (25%)
Ethnicity
European New Zealander/Australian European	7 (58%)
Asian (Indian or Filipino)	4 (33%)
South African	1 (8%)
Highest level of education
Undergraduate	6 (50%)
Postgraduate	5 (42%)
Vocational training	1 (8%)
Child (n)	10
Gender
Male	9 (90%)
Female	1 (10%)
Age range (years)	3–7
Age of diagnosis range (years)^a	3–5
Additional diagnoses
Global developmental delay	5 (42%)
Attention-deficit/hyperactivity disorder	2 (17%)
Auditory processing disorder	1 (8%)
Dyspraxia	1 (8%)

One parent preferred not to answer this question.

The seven participating autistic adults were mostly female, European New Zealanders, aged 18–25, and diagnosed as autistic between the ages of 14 and 24 years (see Table 2 and Supplementary Table S2). All communicated using primarily spoken language during the workshops. The research team consciously recruited AA7 in response to feedback regarding a lack of diversity among Workshop 1 facilitators. He was the only one diagnosed as a young child (3 years). Compared with other participating autistic adults, AA7 had received more support as a child, including attending a special unit at high school. To support his participation, we tailored workshop activities, data collection, and consent procedures providing clear instructions and preparatory tasks.

Table 2.

Demographic Characteristics for Participating Autistic Adults Across All Workshops

Characteristics	All (n = 7)n (%)
Gender
Female	4 (57%)
Male	2 (29%)
Non-binary	1 (14%)
Ethnicity
European New Zealander	6 (86%)
South African	1 (14%)
Highest level of education
High school	3 (43%)
Vocational training	1 (14%)
Undergraduate	1 (14%)
Postgraduate	2 (29%)
Age
18–25 years	5 (70%)
26–30 years	2 (29%)
Age of autism diagnosis (years)	3–24
Workshop communication method
Spoken language	7 (100%)

Design

The study used a mixed-methods design to achieve convergence and corroboration between quantitative and qualitative aspects.²⁵ The quantitative component involved surveys about expectations and experiences of the workshop, and the qualitative component involved semi-structured interviews to explore experiences in greater depth. We selected a mixed-methods approach to capture both quantifiable information and deeper, more nuanced participant experiences, providing a richer, more complete understanding of their perspectives.

Community involvement

All authors except C.W.-W. and L.P. coproduced the study. B.N., C.M., and L.P. are autistic adults. B.N. and C.M. initially suggested the concept for this research alongside a third autistic adult who did not consent to being named. H. Waddington, H.M., and C.W.-W. are family members of autistic people.

Procedures

All authors, except C.W.-W. and L.P., met online several times and corresponded over email to coproduce the research. Three autistic adults (B.N, C.M., and an unnamed third) also met independently to design and prepare the workshop content. These autistic adults had a strong understanding of best practices around neurodiversity due to their role, studies, and/or personal interest. H. Wallace, a Senior Lecturer in Education, reviewed the slides to ensure they contained no harmful ideas or misinformation. These three autistic adults received $100 in supermarket vouchers to acknowledge their contribution in preparing the workshops. The autistic participants themselves chose and preferred this method of compensation. All participating autistic adults received $100 in supermarket vouchers for each workshop they facilitated. Three autistic adults facilitated each workshop. The first was facilitated by the three autistic adults who had codesigned the workshops. AA7 was the only one to cofacilitate more than one workshop (Workshops 2 and 3).

All participants provided informed consent and completed a demographic survey prior to the workshops. H. Waddington assisted AA7 to complete his demographic survey. Parents also completed a survey about their expectations of the workshop. A non-autistic team member then explained the workshop format and guidelines (Supplementary Data S3). Each workshop lasted between 1 hour 45 minutes (Workshop 1) and 2 hours (Workshops 2 and 3), excluding the time taken to complete the surveys and interviews. We held the first workshop in 2022 and the next two workshops in 2024 following additional funding. All workshops took place in-person at the Autism New Zealand Resource Centre in Petone, Wellington, either in the morning (Workshops 2 and 3) or in the afternoon (Workshop 1). During workshops, the autistic adults and parents sat around a table, joined by a non-autistic team member who provided organizational support. Due to last-minute scheduling challenges, an autistic team member (L.P.) joined as a facilitator online via Zoom in Workshop 2. A practicing clinical or educational psychologist was available to provide support to participants, but no such support was requested.

We delivered each workshop as outlined in the “Emerging Practice” section. The timing of each aspect was as follows: (a) autism and neurodiversity presentation (delivered by —one to two autistic adults; ∼20 minutes); (b) autistic adults sharing positive and challenging life experiences (∼25 minutes); (c) parents sharing information about their child (∼20 minutes), (d) break for food (∼15 minutes), and (e) autistic adults responding to parent questions (∼40 minutes). Parents asked a range of questions in the workshops including requesting further details about the autistic adults’ life experiences and advice relating to their own child. Some examples include asking about experiences of the diagnostic process and for advice on their child’s sleep difficulties. Autistic adults responded sharing their own experience (e.g., what helped with their own sleep) and were very clear that they could not give professional advice (e.g., that they were not trained sleep consultants). In Workshops 2 and 3, AA7 read a pre-prepared speech during the experience sharing section and did not participate in the question asking section. During Workshop 1, an iPad timer kept visible track of session times; however, some participants found the timer stressful, so we removed it for Workshops 2 and 3. Parents then completed a post-workshop survey. Finally, participants reflected on the workshop during a semi-structured interview conducted by research assistants or non-autistic team members. All parents and autistic adults did this individually except Parents 5 and 6 and Parents 10 and 11 who completed these interviews together as a couple. Each interview took place in a private room within the building.

All parents except Parents 6 and 12 participated in a follow-up interview 1 month later. These interviews took place in participants’ preferred locations: six over Zoom, three in a private room at the Autism Resource Centre, and one in the participant’s home. Parents 10 and 11 completed this follow-up interview together.

Measures

Demographic surveys for all participants included questions about ethnicity, gender, diagnoses, and age of autism diagnosis. Parents completed this about themselves and/or their autistic child, where relevant.

The parent pre-workshop survey included four questions about expectations of the workshop, while the post-workshop survey had 12 questions (Supplementary Data S4 and S5). Parents rated each item on a 6-point Likert-type scale (1 = strongly disagree to 6 = strongly agree). Pre- and post-workshop items assessed whether participants expected or found the information in the workshop to be relevant, easy to use, and likely to increase their knowledge and understanding of their child’s experience of being autistic. The remaining post-workshop items related to participants’ understanding of the content, perceptions of the delivery methods, effectiveness of the delivery style, workshop length, and the number of people present.

The semi-structured interviews guided participants through specific topics while allowing them to introduce new directions.²⁶ We offered autistic adults the choice to answer the questions verbally, in writing, or over email (see Supplementary Data S6–S9 for interview guides). All completed the interviews verbally except AA7 who responded in writing to simplified questions (Supplementary Data S9). The interviews focused on workshop goals, expectations, experiences, perceptions, outcomes, and suggestions for improvement. Parents reflected on their participation in the workshop, while autistic adults reflected on their role as facilitators. The interviews lasted a median of 19 minutes (range = 8–44 minutes).

Data analysis

We descriptively present the quantitative data from the parent pre- and post-workshop surveys in tables. The research team identified all participants by ID numbers (Parent [P] / AA X). Interviews were audio-recorded and transcribed, with identifying information removed. Interviewers audio-recorded rather than video-recorded interviews to reduce the potential for participant discomfort and to foster a relaxed, conversational atmosphere.

We analyzed the data from the interviews in Workshop 1 using a reflexive thematic analysis (reflexive TA) approach to identify patterns and commonalities in the data.²⁷ Reflexive TA is a flexible approach that does not depend on existing frameworks to analyze the data. Reflexive TA involves familiarization with the data, identification of initial codes, systematic coding of the data, and generation of initial themes, which are reviewed, defined, and named. H.M. conducted the initial familiarization and coding process for the autistic adults and H. Wallace for parents. These two authors then met several times to identify codes that existed across both datasets and those that were unique to either group. The two authors then separately coded the data for autistic adults and parents before meeting again and using visual mapping to refine the codes into themes. H. Waddington and C.W.-W. reviewed these themes, and we made adaptations according to minor feedback, for example, on language and phrasing. As we gathered data across different timepoints, we used the themes identified in Workshop 1 through reflexive TA as a coding template for the analysis of data from Workshops 2 and 3. Following the relevant steps of template analysis,²⁸ L.P. conducted this analysis, focusing first on step 1, familiarization. She did not conduct steps 2–4 (generating initial codes, reviewing and refining codes, and developing initial themes), because the template had already been established. L.P. then moved to step 5, applying the template to the new dataset with minor adjustments made where necessary, before completing step 6—applying the adjusted coding template to the entire dataset.

In TA, analysis is understood to be influenced by the researcher’s positionality, and this subjectivity is considered a valuable resource.²⁹ Tracy³⁰ points to credibility, or trustworthiness, as one criterion for quality qualitative research. We used participant quotes to aid in trustworthiness, ensuring our findings reflect the voices of the participants and provide thick description. We triangulated data through quantitative surveys²⁵ and used memos to aid in researcher reflexivity. We also had multiple coders sense checking and exploring their assumptions and interpretations.³¹

Results and Lessons Learned

Quantitative results

Table 3 shows that post-workshop, parents generally reported their expectations had been met. However, they were slightly more likely to “somewhat agree” or “agree” than to “strongly agree” that the content was easy to use, that their knowledge had increased, and that the workshop had changed their understanding of their child. Table 4 shows that, after the workshop, most parents “strongly agreed” the content was understandable and easy to follow, the delivery methods were appropriate, the delivery style was effective, and the right number of people were included. However, three of the four parents attending Workshop 1 would have preferred a longer workshop.

Table 3.

Parent Pre- and Post-Workshop Survey Responses (n = 12)

Level of agreementn (%)	Somewhat disagree		Somewhat agree		Agree		Strongly agree
Pre-	Post-	Pre-	Post-	Pre-	Post-	Pre-	Post-
Relevant information	0	0	0	1 (8%)	5 (42%)	2 (17%)	7 (58%)	9 (75%)
Ease of learning	1 (8%)	0	3 (25%)	1 (8%)	1 (8%)	6 (50%)	7 (58%)	5 (42%)
Increase in knowledge	0	0	0	2 (17%)	3 (25%)	3 (25%)	9 (75%)	7 (58%)
Change in understanding of child	0	0	2 (17%)	5 (42%)	3 (25%)	1 (8%)	7 (58%)	6 (50%)

Table 4.

Parent Survey Responses to Post-Workshop Only Questions (n = 12)

Agreement with the following statements:	Disagree	Somewhat disagree	Somewhat agree	Agree	Strongly agree
Understandable/easy-to-follow content	0	0	0	0	12 (100%)
Appropriate delivery method
PowerPoint	0	0	0	0	12 (100%)
Autistic adults sharing	0	0	0	0	12 (100%)
Parents sharing	0	0	0	0	12 (100%)
Questions	0	0	0	1 (8%)	11 (92%)
Effective delivery style	0	0	1 (8%)	1 (8%)	10 (83%)
Correct length	3 (25%)^a	0	1 (8%)	1 (8%)	7 (58%)
Right number of people	0	0	0	2 (17%)	10 (83%)

Three participants from Workshop 1 indicated they wanted a longer workshop.

Qualitative results

Five distinct but interconnected themes were developed through the TA process: (1) changing the narrative, (2) connection, (3) emotional and psychological outcomes, (4) representativeness, and (5) workshop dynamic.

Changing the narrative

Autistic adults expressed a desire to change how autistic people are perceived and understood, including steering parents away from a deficit-focused view of autism as a diagnosis. For AA1, changing the narrative around autism was important, as she grew up feeling the effects of its negative representation: “I spent many years knowing I was autistic but only ever seeing that through the idea that that meant there was something wrong with me, because that’s what my diagnostic paperwork said—it was a list of deficits.”

Parents described how their views on autistic people and autism as a diagnosis shifted during the workshop. Hearing the lived experiences of autistic adults was one of the most valuable parts of the session. P11 shared, “hands on experience with either an autistic individual, or a parent is something that you can sort of grasp onto a bit more” than professionally run courses.

Several autistic adults emphasized the importance of parents learning about autism from autistic people themselves. AA3 noted it is “valuable and important for parents to have some input that isn’t medical or negative or from neurotypical people.” Similarly, AA2 wanted to reassure parents that being autistic is okay despite existing negative connotations: “No this is actually alright. Here we are. We’re fine. Everything’s fine.”

Most parents found it “good to learn from actual autistic adults” (P10). For P2, “it was a completely different lens, it was a completely different flavour of understanding.” Some parents expressed hesitancy around asking questions that could be “offensive or confronting” (P7) to the autistic adults or that could “make them uncomfortable” (P3).

Some parents reflected on the use of identity-first language. For P3, this contrasted with advice he had received elsewhere:

I’m hearing [the autistic adults] say it’s a good thing, like “please call me autistic” and I’ve got the other [autistic person] who is sort of … saying the opposite actually, you know the whole “I’m more than just my autism.”

For P4, the emphasis on identity-first language aligned with her existing knowledge: “Autistic people like to be called autistic, so that was something that I’d come across and not ‘have autism.’” P7 shared that they would shift their language use following the workshop: “I’ve been saying my son’s on the spectrum, because that’s what [service provider] said. And that person wasn’t autistic. And to hear that from an autistic person … I need to change that.”

This change in narrative also influenced the participants’ parenting practices and approach. P2 noted that she loved the tips she gained, including the fact that eye contact was not necessary for communication and to not “force the kids to eat food if they don’t want to, just go with the flow.” At follow-up, P7 shared that he previously “might have tried to stop” his child’s stimming but he now knows that “he’s actually got something going on he needs to get out.”

Connection

All participants expressed a desire to build connections with members of the autistic and autism communities.^a AA7 enjoyed getting to know the others in the workshop including the opportunity to “see what other people’s lives are like.” For some parents, these connections reduced feelings of loneliness or isolation: “after today I don’t feel alone at all” (P9). Some parents valued hearing from others who were going through, or had been through, similar difficult experiences: “It was good to be in a position to share those or hear other people’s experiences and go, it’s the same or it’s not so bad” (P7).

Some parents said it was meaningful to speak directly with autistic adults as they were “talking to the people who one day our children might become” (P7). If not for the workshop some parents “wouldn’t have ever had a conversation with an autistic adult” (P2). For P4, “it was reaching out to [AA1] afterwards that was very rewarding.” Some parents, however, felt hesitant about contacting the autistic adults following the workshop as they did not “want to ask anything that’s too much to ask of them” (P1).

Some autistic adults appreciated the connections they made with the parents. For AA2, it was their first opportunity to do so: “I haven’t really talked to other … parents [of autistic children] before—except for my own. So that was really cool getting their perspective.” AA4 appreciated the attitude of the parents and being “surrounded by … people who genuinely understand or as much as they can understand.”

Autistic adults reflected on their own desire to connect with autistic people when they were younger. AA3 explained how “I wish I’d met autistic people when I was younger, I think that would have made a difference. Cause you feel really alone. You want to meet people who are like you.” AA1 believed such connections may help young autistic people feel more positively about being autistic: “I hated it as a teenager. We all go through that process … but if maybe you got your teenager talking to other autistic people, they wouldn’t feel that way.” Some autistic adults valued creating relationships and learning from the other adults who facilitated the workshop: “I don’t know many autistic people except for the people that I grew up with. So it’s quite cool to learn more from them” (AA2).

Parents in Workshop 1 also discussed the importance of creating connection for their children. P2 reported, “I said to [another workshop parent] I really hope that the kids can grow up and stay connected and maybe be friends one day and [they] just went ‘oh me too.’” P1 shared that she wanted to attend the workshop because she was “looking for an autistic community, both for myself as a parent but, primarily for [my child] so that they can build some relationships going forward [to] feel less alone in their diagnosis.”

Parents valued building relationships with one another, reflecting that they were “all there for each other. It was no judgement” (P9). During the follow-up interview, P4 reported that the parents from Workshop 1 had met at “one of the soft play centres and it was chaotic, but we were like ‘hey, this is life’ and ‘hey let’s make a support group and reach out to each other.’” P2 emphasized that hearing from the autistic adults motivated this connection: “For the autistic adults to say that was something that they [would have] really valued when they were growing up. That they weren’t around other autistic kids.” Several parents noted that the similarities between their children facilitated the bond between them. P1 said, “We all had five-year-old boys who just started school. That worked out really well.” P4 felt similarities between the parents also supported this connection: “They were motivated to seek and learn more and support their children, and that’s my journey and we would have that in common.”

Emotional and psychological outcomes

Parents and some autistic adults described positive outcomes from the workshop for themselves. Parents shared that the workshop made them feel that “there’s lots of hope” (P7) for their child’s future. P2 said, “I sometimes find it a bit too alarming to think about what could happen in the future … But actually, to meet these lovely [people] has just been so inspirational.” Some parents in Workshops 2 and 3 indicated that meeting AA7, in particular, was “very positive and very inspirational” (P9) and helped them to be more optimistic about their own child’s future. P7 felt that “to see that [AA7] is able to live independently that’s really good, that means … we’re not going to have to be there or worry about what happens when we’re gone.” The workshop helped some parents imagine their child’s future: “being more aware that, you know, he’s going to need to have some kind of life when he leaves school” (P8).

Some parents reported increased confidence, particularly those who already had some knowledge about neurodiversity. Hearing this information from autistic adults made P12 feel “quite validated … sometimes we feel like we’re making it up as we go along.” Parents also experienced increased confidence in sharing knowledge with others in their child’s life. In the follow-up interview, P2 noted that she felt confident letting people know that her son “might not be able to tie his shoelaces but, actually, we’ve got this amazing woman that’s found her groove and [my son] will find his groove.”

Facilitating the workshops made some autistic adults feel valued. AA1 stated, “I think there’s some good things from a feeling valued and self-esteem perspective—that you’ve got a group of people who are genuinely interested in your experiences and your opinions.” She also found it meaningful to educate parents and share insight into autistic experiences from an autistic perspective. However, not all autistic adults felt they personally benefitted from facilitating the workshop. AA4 reflected that the workshops were “definitely more for the parents’ benefit” (AA4).

Representativeness

Participants reflected on how closely the autistic adults’ characteristics aligned with the children of the participating parents. Participants, particularly in Workshop 1, expressed that it would have been valuable to meet and learn from autistic adults whose experiences were “a bit more like” (P3) their children’s, for example, an autistic facilitator who was “a male, or someone assigned male at birth” (P4), who “was nonverbal for years or something” (P3), and “who was diagnosed when they were younger, like when they were heading into school” (AA2). However, some parents saw benefits in elements of this mismatch: “My little boy is nonverbal, so he can’t really tell me what it’s like to be autistic. So it’s quite good to hear from people that are, you know, older and can tell you” (P8). Several parents in Workshops 2 and 3 remarked upon the alignment between the characteristics of AA7 and their own child: “It was good to see that [AA7] had all the same kind of challenges my little boy might have growing up and he’s doing so well” (P8).

Several participants indicated that the age gap between the autistic adults and children was a potential barrier for offering parents advice “as most of the parents there had young children” (AA7) and that it could be beneficial to hear from someone “a bit younger” (P10). P1 noted that the adults might have limited insights into her child’s experiences “because they probably couldn’t remember when they were five.” For other parents, there was an advantage in the adults being older as it meant they could provide “a more future-looking understanding of how things could turn out and what we can do now to do it better” (P2).

Workshop dynamic

Participants described the overall “feel” of the workshop as “a safe, comfortable space” (P8) that was “very welcoming” (P10). In her follow-up interview, P9 shared she “felt like I was home.” AA2 described the workshop as “cosy,” which helped her to feel comfortable in sharing her experiences, while AA5 shared that because the environment felt so safe, “you could be authentically yourself.”

Some participants emphasized that accommodations within the workshops were “just a given” (AA6). This included the use of colored cards when responding to questions: “It allowed us to ask questions but [gave the autistic adults] the power to choose whether they wanted to answer or not” (P12). AA6 indicated that this was “completely respected” when she did not want to answer a question. Similarly, AA6 valued consideration of her “beige diet food” and need to use fidget toys. However, P9 would have benefited from “having fidgeting toys on the table” for everyone to use.

Several parents also appreciated the intimate nature of the workshop and that it was “not intimidating to talk” (P10). AA5 expressed, “you can answer the questions a bit more usefully, because you kind of know each parent a bit more.” The environment made it easier to share openly, with P2 stating, “I think it’s nice that other parents feel that they can open up and express their emotion in such a comfortable environment.” The face-to-face nature of the workshop also influenced the parents, “to see three very successful autistic adults … sharing their experiences. It was just really inspirational” (P2).

Views varied on expanding the workshop to family and professionals. P1 noted, “Wouldn’t it be wonderful if we could have teachers sitting there and listening to what it was like for autistic kids at school?” AA5 suggested this could be expanded to parents of older children or adults: “My parents would I think really benefit from even just being around other parents. Because you don’t really have that opportunity.” While recognizing the benefits, P2 preferred, “to have it as quite a close-knit group of just one parent [per child]. I thought probably that balance was perfect.” Some participants thought it would be beneficial for parents to also hear advice from other parents: “I think that’s honestly more valuable. Maybe not cutting out the autistic adults altogether, but putting more of an emphasis on parents sharing with parents” (AA4).

Participants generally felt the workshop should have been longer and more “fluid” or that a series of workshops would have been beneficial. This would have enabled “a lot more discussions” (P7) and “then parents could have asked about very specific things” (AA1). Similarly, P3 noted he would have preferred “having a chat almost an ‘oh let’s just hang out’” over the more structured approach. AA3 agreed, stating the time restraints “stressed me out.” AA6 also felt that the question asking session would have run more smoothly if parents were “told beforehand to think of like five questions.”

Discussion

This coproduced mixed-methods study evaluated autistic-led autism information workshops for parents of young autistic children—an emerging practice. Findings indicate that autistic adults and parents were positive about the workshops. This aligns with research demonstrating the benefits of autistic people providing support and information about autism to both autistic and non-autistic people,^8,13,19-21 as well as the broader value of autism information workshops.^22-24

The autistic adults expressed wanting to “change the narrative” by framing autism in an affirming way.⁴ This aligns with the neurodiversity paradigm, which views autism as a natural variation in human cognition and highlights the inherent value of autistic individuals.¹ Parents indicated that the workshop supported a more positive understanding of autism and their child. They suggested that the content differed from more medicalized/deficit-focused training that they had previously received from non-autistic professionals. This contrast may reflect Milton’s³² double empathy problem, which attributes communication challenges between autistic and non-autistic individuals to mutual misunderstandings rather than a deficit within autistic people. Parents learning directly from autistic facilitators may have helped bridge this gap. Our findings align with research that suggests that autistic-led psychoeducation fosters more positive views of autism.^18,19 For example, Gillespie-Lynch et al.²¹ found that codesigned autism training was more effective than a nonparticipatory approach in improving attitudes toward autism and reducing stigma.

While most parents felt that the workshop supported their existing awareness of, and desire to adhere to, the neurodiversity movement, P3 did question the use of identity-first (e.g., “autistic child”) rather than person-first language (e.g., “child with autism”). Although identity-first language is the preferred terminology in New Zealand,³³ preferences vary across individuals and regions.^34-36 Research suggests that within autistic populations, stronger autism identity and reduced autism-related stigma predict more favorable attitudes toward identity-first language.³⁵ These preferences may reflect deeper beliefs about autism.

Participants valued the workshop’s role in fostering connections both within and across identity groups. Previous group-based approaches tend to support positive autistic-to-autistic and parent-to-parent connections.^19,20,37,38 For autistic people, a sense of connection to the broader autistic community may improve self-esteem, create a sense of belonging, and reduce feelings of loneliness.^{39B40 -42} Several autistic participants wished they had developed autistic-to-autistic connections during adolescence, signaling the importance of building these connections early.⁵ Participants also appreciated the opportunity to create autistic-to-parent connections. This finding is novel and important, given how few structured opportunities are there for parents of autistic children and autistic adults to meet.

Participants commented on perceived alignment and mismatches between the characteristics of the autistic children and those of the autistic adult facilitators. Participants in Workshop 1 noted that the autistic children differed in gender, age, level of spoken language, and age of diagnosis from the autistic adults. Several parents in Workshops 2 and 3, however, remarked upon how the characteristics of AA7, an early diagnosed male who was slow to develop speech, aligned with their own child. Parents appeared to be making determinations about their child’s nature and possible future based on perceived similarities and differences in the experiences of the panel.^43,44 Anecdotally, sentiments such as “you’re not like my child” have been used to minimize the relevance of autistic adult perspectives on autistic children.^45,46 While the parents in our study were not dismissive of the perspectives of the autistic facilitators, it is critical to avoid reinforcing this rhetoric. Incorporating a diverse range of autistic facilitators could represent a wider variety of experiences, enriching parents’ understanding.

Our findings align with broader policy efforts to integrate autistic perspectives into autism education. In the United Kingdom, the Oliver McGowan Mandatory Training on Learning Disability and Autism was developed to enhance professional understanding of autistic individuals and people with learning disabilities. Similar to parents in our study, a preliminary evaluation of the training found that participants valued the inclusion of autistic individuals and those with lived experience, and wanted more time to ask them questions.⁴⁷ Thus, extended opportunities for questions may enhance autistic-led workshops.

Ensuring the long-term sustainability and efficacy of autistic-led information workshops requires careful consideration of infrastructure and implementation strategies. The evaluation of the Oliver McGowan Mandatory Training⁴⁷ emphasized the importance of maintaining consistency and quality control across different settings while ensuring the program leads to measurable improvements in professional practice. As highlighted in a separate evaluation by the National Development Team for inclusion,⁴⁸ trainers with lived experience require structured support, training, and adequate compensation for their expertise. While sustainability was not explicitly discussed by facilitators in our study, our findings suggest that ensuring diverse facilitator representation, providing sufficient preparation time, and increasing opportunities for interactive learning may strengthen the effectiveness of autistic-led workshops.

There are several implications of these findings. This study shows the benefits of co-production, as the research idea was raised and developed by autistic people.⁴⁹ The current study provides preliminary evidence that autistic-led autism information workshops may be beneficial for both parents and autistic people. It is important to include a diverse range of autistic facilitators who reflect variations in gender, age of diagnosis, and communication style. This diversity may help parents connect with perspectives that feel more representative of their child’s experiences while still benefitting from the broader insights of the autistic community. Participants generally indicated that they would benefit from either a longer workshop, or a series of workshops. Indeed, research suggests that one-off workshops may be insufficient for promoting long-term learning and change for all participants.^23,50

There are several limitations to this research. The sample size was small, which may limit the generalizability of the findings to other autistic adults and children, including those without previous exposure to neurodiversity-affirming practices and beliefs. However, the aim of this project and TA more broadly was to understand the nuances and complexities of experience for this particular group of participants.²⁹ Self-report responses are subject to biases; for example, parents’ reports of changes in their behavior following the workshop may differ from data gained through observation. Additionally, we did not collect data on co-occurring diagnoses or specifics of support needs for the autistic adult facilitators.

This study raises several areas of future research, all of which should involve autistic researchers. This includes evaluating autistic-led information workshops with a wider number and variety of participants. Researchers could also investigate perceptions of workshops for parents at different stages of their child’s diagnostic journey, such as those of newly diagnosed children or those awaiting a diagnosis. Researchers should examine how parents’ knowledge of autism influences their experience of the workshops including exposure to professionals with outdated knowledge or stigmatizing public perceptions of autistic people. Future research should consider the potential benefits of delivering a series of information workshops to the same group of parents or extending the duration of workshops. Researchers could also explore how a series of workshops influences parents’ understanding and application of neurodiversity-affirming perspectives over time. Additionally, future research could include a more diverse sample of autistic adults and children, with greater variation in gender, age at diagnosis, and the presence or absence of co-occurring learning differences.

Footnotes

Acknowledgments

First and foremost, the authors thank the parents for taking the time to participate in the workshop and the data collection process and autistic adult facilitators. The authors would also like to thank Chevelle Ataera, Courtney Careless, Siobhan Gardiner, Selina Muralitharan, and Dr. Jessica Tupou for their assistance with data collection and/or coordination of the workshops.

Authorship Confirmation Statement

The study was coproduced at all stages by all authors except C.W.-W and L.P. This included input into the design of the study, the methods used, interpretation of the findings, and the writing of the article. C.W.-W provided advice on the design and methodology and assisted in writing the article. L.P. provided assistance with organization and data analysis of Workshops 2 and 3, as well as the writing of the article. The article has been submitted solely to Autism in Adulthood.

Author Disclosure Statement

The author(s) declared the following potential conflicts of interest with respect to the research, authorship and/or publication of this article: H. Waddington, L.P., C.M., and C.W.-W. provide support to autistic children and their families. H.M., H. Wallace, and B.N. have no conflicts of interest to disclose.

Funding Information

This study was funded by a small research grant from Te Herenga Waka - Victoria University of Wellington.

Supplementary Material

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Supplementary Material

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