Open Society

Parents should tell their children they are autistic in ways that help them understand and feel good about who they are.

Neurodivergent Having a brain that differs significantly from the average (for example, autistic, dyslexic or ADHD). Neurotypical Having a more typical brain; belonging to the neurological majority. Compare allistic, which simply means ‘not autistic’. Neurodiversity The diversity of human brains and minds. A group of people with diverse brains is neurodiverse. The neurodiversity paradigm accepts… Read the full article

Free reading lists, information about organisations, and information for families.

As an autistic person, having bodily needs not only gets on my nerves, it sometimes can cause emotional instability and meltdowns. Can you relate?

Dinah Murray was so much more than a “productive irritant”... Murray’s life and work was a treasure of immeasurable value.

Merging real stories with theory, research, and practice, educator Dr. Christopher Emdin offers a new approach to teaching and learning for every stakeholder in urban education.

In his For White Folks Who Teach in the Hood…and the Rest of Y’all Too, Christopher Emdin confronts “classroom colonialism” (p. 14), and…

Autism in Adulthood

In most places, as soon as a child is identified as autistic, they are funnelled straight in to early intervention therapies. Based on a medical model of disability, these therapies see autistic ch…

[content note: this starts rather depressing but gets more upbeat and hopeful]

I originally presented this at the Intimate Lives? Autism, Sex/uality, Gender and Identity conference at the University of Birmingham, May…

A Juneteenth reading list on racial capitalism, resistance, and remaking the world.

Hyperfocus, a common — but confusing — symptom of ADHD, is the ability to zero in intensely on an interesting project or activity for hours at a time. It is the opposite of distractibility, and it is common among both children and adults with attention deficit hyperactivity disorder.

3 Reasons to Say “Disability” Instead of “Special Needs” - 3 simple reasons why you should quit saying "special needs" and move on to "disability"

Content note: In this article I explain why I don’t like or use the term “special needs” and why I don’t see the needs I have as a disabled persona s being “special”. Have you seen the comments about people with “special needs”? You know, the ones where people point out that having “special needs”…

Note: This piece ended up being over 10,000 words, way longer than I had anticipated. So now it’s a series, published all at once. I…

I am a parent to autistic children, and am also autistic myself. In my day to day life, I meet other parents of autistic children. Parents are often immensely ableist, seeing their autistic childre…

CW: Compliance training, mention of abuse. Compliance is a word that many autistic people and parents of autistic children automatically associate with behavioral therapy such as ABA, but in fact a…

It’s two years since I first discovered there were other families who questioned the value of pushing neurodivergent children in to boxes they could never fit.  It’s been 22 months since we withdre…

Brad Evans speaks with Canadian cultural theorist and philosopher Erin Manning. A conversation in Brad Evans’s “Histories of Violence” series....

Trigger Warning: ABA, ableism, institutionalized child abuse [Image Description: A bright red door with a brass knob and a faded mail slit. To its left, there is a long, dark windowpane with some d…

Awareness and understanding of autism are increasing, sometimes in small incremental steps and sometimes through paradigm shifts. Much of this is driven by autistic advocates, whose voices are increasingly recognized as experts in their own lived experiences. The growing presence of autistic people in autism research—as participants, advisors, and (co)researchers—has brought about changes in the quality and relevance of autism research. We are seeing more studies by autistic autism researchers, more studies on issues of importance to autistic people, and more studies utilizing methodologies that resonate with autistic people. However, there remains a reliance on measures that are technically “valid” and “reliable” rather than relevant. As long as this is the case, we will continue to see studies published that “explain autism” in ways that do not reflect autistic experiences. Autism research is still making incremental changes and it is time for a paradigm shift. Community brief “Why is this topic important?” Research into the experiences of autistic people is used to inform policy, practice, and community understanding. It is important that autism research respects and reflects autistic voices. Current research often uses scientific instruments that are not consistent with our lived experience of autism. “What is the purpose of this article?” This article explains why the current approach to research—encouraging the use of existing measures and incremental change—is harmful to autism research and to autistic people. It provides examples of commonly used tools and explains why they are problematic. The article aims at encouraging a discussion into why the findings of autism research are often inconsistent with the experiences of autistic people. “What personal or professional perspectives do the authors bring to this topic?” I am an autistic adult, the mother of two autistic adults and an autism advocate. I am also an autism researcher with a background in public health and communication. “What is already known about this topic?” Academic journals aim at publishing papers that present the best and most accurate research projects. Researchers are encouraged to use tools that have been developed and tested in previous studies, because these are considered to be “reliable” (consistent) and “valid” (accurate). Researchers are discouraged from developing new measures or making major changes to existing ones. So, it can be hard to publish community-driven research that uses tools developed by autistic people. “What do the authors recommend?” I recommend that autism researchers ensure that the tools they use to study autism actually measure the experiences of autistic people. I also recommend that we stop relying on existing measures that do not make sense to autistic people and work with autistic people to develop better tools. “How will these recommendations help autistic adults now or in the future?” These recommendations will help autistic adults by making autism research more relevant and useful. Research that reflects our actual experiences will improve community understanding of autism. It will also lead to better policies and practices that meet the needs and aspirations of autistic people.

Participatory research methods connect researchers with relevant communities to achieve shared goals. These methods can deliver results that are relevant to peo...

Journal of Autism and Developmental Disorders - This study investigated sex/gender differences in camouflaging with children and adolescents (N = 84) with and without an autism...

Autism Spectrum Disorder (ASD) is often unrecognized, especially in mild forms and in women. Studies evaluating features associated with missed/misdiagnosis in men and women with ASD are warranted. 61 subjects (22 females, 39 males, age 28.5 ± ...

The proportion of females whose ASD diagnosis is missed is unknown. The ratio of males to females with ASD is generally quoted as 4:1, though it is believed that there are biases preventing females from being diagnosed and that the true ratio is lower. These biases have not been clearly identified or quantified. Starting with a clinical dataset of 1711 children <18 years old, four different methods were employed in an inductive study to identify and quantify the biases and calculate the proportion of females missed. A mathematical model was constructed to compare the findings with current published data. The true male-to-female ratio appears to be 3:4. Eighty percent of females remain undiagnosed at age 18, which has serious consequences for the mental health of young women.

Of children meeting criteria for ASD, the true male-to-female ratio is not 4:1, as is often assumed; rather, it is closer to 3:1. There appears to be a diagnostic gender bias, meaning that girls who meet criteria for ASD are at disproportionate risk of not receiving a clinical diagnosis.