Search This Blog

Sunday, March 10, 2024

Study of Parent Perspectives

 In The Politics of Autism, I write:

The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a  disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”

 Asbury, K., Toseeb, U., & Barrow, N. (2024). What do parents of nonverbal and minimally verbal autistic children think about genomic autism research? Autism, 0(0).

Lay abstract:

In Summer 2021, a genomic study of autism, Spectrum 10 K, was paused due to backlash from the autistic and autism communities. This raised important questions about how these communities perceive genomic research. The Personal Experiences of Autism and Perceptions of DNA-based research study was established to address this issue among a range of sub-groups within these communities. Twenty parents of nonverbal or minimally verbal autistic children took part in the current study. Data were provided in diverse formats including online interviews, telephone interviews, and writing. This approach was co-produced with autistic experts by experience and involved a parent of a minimally verbal autistic child. Data were analysed using reflexive Thematic Analysis. We found that participants were supportive of autism research, including some genomic research, as long as it is designed to support autistic people and is ethical and transparent. However, while some believed that polygenic scores, genomic predictors of the statistical probability of being autistic, would be helpful, others argued that this would only be true in an ideal world and that the world is too far from ideal. Participants felt excluded from the autistic and autism communities and that the dominant voices in those communities do not represent them or their children. We concluded that genomic researchers need to work with the autistic and autism communities to design future work, and that it is important to ensure a representative range of voices are heard.

From the study:

Participants expressed a view that their children’s experiences are meaningfully different to those of the most vocal members of the autistic community and that this makes them feel their children are unheard in discussions that affect them, including discussions about genomic autism research. This belief was often coupled with the idea that because their children do not have a voice – in the sense that their speech is absent or very limited – they, as parents, need to be that voice, even with the risk that they may not represent the children exactly as they would choose to be represented.

Participants used the language of severity and function level, while acknowledging that such language is unpopular within the autistic community. P6 said: ‘not everybody gets the good type of autism, the high-functioning autism’. While several participants were at pains to be clear that they did not wish to minimise the experience of others, most felt that their children faced significantly more challenges than those individuals whom they saw speaking for the autistic community on social media and elsewhere. Because they saw their children as different from the dominant autistic voice, as they perceived it, participants felt their experiences were rarely taken into account, and this exacerbated feelings of isolation. ‘It sometimes feels that the voices of high-functioning autistic people are angry and strident and do not take into account whatever their non-verbal peers may think or feel’ (P2). P15 related this specifically to the activism that took place around the launch of Spectrum 10 K:
And, so for those people that are really severely affected I think basically those people kicking off kind of robbed a portion of the autistic community of that chance, to have that research done . . . I just think it was short-sighted and selfish. That is kind of quite strong, but that is my opinion.