Divergent Perceptions of Autistic Parents Among Health Care,Social Care,and Judicial Professionals and Autistic Adults: A Participatory Study

Abstract

Background:

Autistic people can and do become parents, yet they often feel misunderstood. They fear being judged on their parenting abilities by professionals from health care, social care, and even judicial systems, including the risk of unwarranted and disproportionate child protection investigations or interventions. Despite these concerns being frequently reported qualitatively, they have not been investigated with quantitative data.

Methods:

Using a participatory research framework, we co-constructed a clinical vignette and a set of questionnaire items in collaboration with autistic parents to ensure that the materials reflected their lived concerns and priorities. Professionals from health care, social, educational, judicial, and allied health fields, as well as autistic adults, were invited to complete the survey. We compared their perceptions of a fictional autistic mother, before and after diagnostic disclosure, as well as their views on professional competency regarding autism.

Results:

Although professionals do not hold overtly negative views, their perspectives diverge from those of autistic adults. Professionals perceived the fictional mother with high autistic traits more negatively than did autistic adults before knowing the diagnosis. In addition, judicial, medical, and paramedical professionals were less likely to identify autism than autistic adults. However, participants reported that diagnostic disclosure was somewhat reassuring and decreased their concerns about the mother’s psychological needs. Professionals rated their own competency in autism higher than autistic adults did when evaluating the professionals, although most professionals reported needing further training.

Conclusion:

These results provide support for autistic parents’ concerns about stigma. Divergent perspectives between professionals and autistic adults may be partly explained by a “double empathy problem,” where autistic and non-autistic individuals do not share the same reference frame for behavior. The findings underscore the importance of targeted training on autistic parenthood for all professionals, particularly those with minimal prior autism-specific training, to reduce bias and improve understanding.

Community Brief

Why is this an important issue?

Reports from autism organizations, the press, social media, and some research based on interviews with autistic parents suggest that autistic parents may face unfair judgment and discrimination because of their autism. However, there is still very little research measuring this issue. Research is needed to understand and improve professional practices and support for autistic parents.

What was the purpose of this study?

The study aimed to explore differences in how professionals and autistic adults perceive autistic parents and professionals’ knowledge about autism. We were interested in the views of professionals such as doctors, nurses, psychologists, speech therapists, teachers, judges, or police officers. This was examined in France, where understanding and support for autistic people are still limited. The study was motivated by concerns raised by two autistic mothers who are involved in autism organizations and took part in the research project.

What did the researchers do?

Using a participatory approach, in which researchers and autistic mothers worked together, the two autistic mothers helped identify concerns and challenges faced by autistic parents. The researchers and autistic mothers co-created a fictional case of an autistic mother and an online questionnaire. A total of 124 autistic adults and 988 professionals completed the questionnaire.

What were the results and conclusions of the study?

Professionals judged the fictional autistic mother more negatively than autistic adults did. However, participants’ opinions became more positive after learning that the mother was autistic, which was unexpected. Professionals working in medical- or law-related fields were less likely to recognize autistic characteristics than autistic people. Law professionals also had little autism training. Finally, professionals rated their own knowledge about autism more positively than autistic adults did.

What is new or controversial about these findings?

This study is the first to find evidence backing up the concerns of autistic parents about the unfair judgment they sometimes face from doctors, teachers, psychologists, speech therapists, social workers, and law professionals. We found that many professionals may have difficulty recognizing the characteristics of autism and sometimes don’t have enough training to work with autistic people. This was especially true for law professionals, who often make big decisions about children’s safety and well-being.

What are potential weaknesses in the study?

The professionals who took part in the study may have been more familiar with autism than average professionals. Most participants were females. Professionals were grouped into large categories. The study used a non-standard questionnaire and a single fictional case. The study measured participants’ answers to a questionnaire, which may differ from real-life behaviors. All of these limit our understanding of the issue.

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

These findings provide evidence about how autistic parents are judged by professionals. It also highlights the importance of including autistic people in research to address the questions that are important to them. The results could help improve training for autistic parents, especially in groups with limited autism training, such as law professionals. The results could also help shape policies that support this training.