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.
Keywords: intellectual disability; intervention; neurodiversity; nonspeaking autism; normalization.
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), anddifferent 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.
Copyright 2024, Mary Ann Liebert, Inc., publishers.