Autistic girls and gender-diverse youth identified six key research areas. Image courtesy University of Technology Sydney.

A new study led by autistic individuals and researchers from the University of Technology Sydney (UTS) sheds light on the challenges faced by autistic girls, women, and gender-diverse individuals within healthcare, the education system, and society.

The research paper “Nothing About Us, Without Us”: Research Priorities for Autistic Girls, Women, and Gender Diverse People in Australia emphasizes the critical need for inclusive support to enhance the well-being of autistic individuals. It also offers important insights for the National Autism Strategy, which is currently undergoing community consultation.

Study co-lead Dr. Rachel Grove from the UTS School of Public Health stated that the research aims to address the longstanding gaps in understanding the experiences of autistic women, girls, and gender-diverse individuals.

Historically, autism has been viewed through a gendered lens with incorrect assumptions that only boys can be autistic, resulting in oversight and inadequate support.

Dr. Grove emphasized the importance of having autistic individuals conduct the research.

Sarah Gurrin, a co-lead on the project and autistic herself, mentioned that researchers often study autism without understanding the lived experience and breadth of the condition.

“This research is crucial to prevent another lost generation of autistic girls, women, and gender diverse individuals.”

The researchers listened to the perspectives of over 100 autistic girls and gender-diverse individuals aged 7 to 17, deliberately excluding parents and health professionals in order to prioritize the voices of autistic youth.

As Hayley Clapham, a co-lead in the research, who has autism, explains, “For too long, autism research focused on children and young people has predominantly reflected the perspectives of clinicians, educators, and parents.”

“To ensure that research accurately responds to the needs and experiences of autistic young people, it is crucial that researchers prioritize their inclusion in shaping and informing research and outcomes that directly impact their lives.”

The findings, distilled into six key research priority areas for autistic young people, provide a roadmap for meaningful change.

The foremost concern expressed by autistic girls and gender-diverse young people was the need for greater understanding and support at school, including tailored inclusive support across all educational environments.

One autistic young person told the researchers:

“The fact is that I can be in a school system where I don’t receive the support I need because I’m not visibly struggling. I think there needs to be more awareness spread of how autism looks and that it’s not a little mould that someone can fit into.”

Autistic girls and gender-diverse young people also want a better understanding of their experiences, strengths and challenges related to puberty, sensory differences, and self-regulation needs and to see themselves represented in society and the media.

As one autistic young person put it:

“I didn’t see the representation of an autistic person that looked or acted like me, a girl, a teenager, all of these things.”

The third priority outlines the pressing need for specialised mental health services tailored to the autistic experience. This is critical, given autistic women are 83% more likely to lose their lives by suicide than the general population.

One young person said:

“I spent years struggling in school until I mentally broke … Why does it take so long to help autistic females? Why do we have to be mentally exhausted?”

Other research priorities included friendships and relationships, inclusive policies and resources that affirm and respect diverse gender identities, and focus on support first. The researchers say this is critical given the greater gender diversity among autistic people.

The final research priority focuses on accommodations to make life easier, such as practical adjustments that alleviate stress, build capacity and promote autonomy.

The researchers also spoke to over 300 autistic women and gender-diverse adults, with a further eight key priorities identified, including understanding experiences of trauma, abuse and sexual violence and addressing barriers in healthcare, education and the workplace.

One autistic adult spoke of the importance of recognising the strengths of autistic young people and supporting them to flourish:

“I think these girls, these strengths and these brains need to be embraced and utilised. These brilliant, brilliant human beings… I wished I had those tools and that I was allowed to thrive and be who I am when I was that young.”

Tess Moodie, an autistic co-lead in the research, said, “For years, we have been saying there should be nothing about us without us.

“I am hopeful this will set the standard for commitments from future researchers, both for the priorities and authentically collaborating with autistic people in the co-development of research.

“This work sets the agenda for future research to help autistic young people live better lives in our neurotypical-centred world.”