Seventy years of autism research and three studies that included black women

Naz Jacobs put a number to the problem early in the panel. She said a study, published in 2020 or 2022 (she was unsure which), had reviewed the scientific research on autism over the previous 70 years. It found a broad lack of research into women, and that across those seven decades “only three studies included black women”. The researchers had a term for this, and Jacobs gave it and widened it in the same breath, calling it “scholarly neglect. And it is systems neglect.”

Separate research has examined the same question. A scoping review by Temple Lovelace and three colleagues, Missing from the Narrative, published in the journal Behavior Analysis in Practice on 30 September 2021, searched autism research from 1 January 1943, the period of the first autism papers by Kanner and Asperger, to 1 February 2020, a span the authors put at 77 years. Three publications that foregrounded Black autistic women and girls were included for synthesis, and none of them addressed intersectionality under the criteria the authors applied. The authors concluded that Black autistic women and girls had been neglected in autism research, discourse, policy and practice. Among its priorities for practice, the review calls for more relevant diagnostic criteria and procedures, and it says current methods of estimating prevalence prevent an accurate count of Black autistic women and girls.