Autism Inclusivity: Acceptance and No “Cure Talk”
While many therapists try to “fix” autism, a Facebook group run by autistic adults helps parents and others understand and accept autism.
While parenting autistic children often presents challenges, every family’s story and needs are unique. According to Medscape, autism is characterized by qualitative abnormalities in social interactions, markedly aberrant communication skills, and restricted repetitive behaviors, interests, and activities. However, the disorder’s official name, “autism spectrum disorder,” captures the reality that every autistic person is affected differently, which makes personalized advice invaluable. An estimated 1 in 54 individuals have ASD.
In contrast to other Facebook groups focusing on autism, Autism Inclusivity is managed entirely by autistic adults. The group’s 18 admins give parents of autistic children a chance to directly connect with and learn from autistic adults. Participants value the wide range of advice and support available from both autistic adults and parents of autistic children.
There are nearly 100 groups on Facebook focusing on autism, ranging from Autism, with over 78,000 members, to Autism Speaks Carolinas, with 343 members. In contrast to most of these groups, the Autism Inclusivity group has a clearly stated agenda; the group is not interested in “curing autism,” said Emma Dalmayne, one of the group’s founders, during a phone interview. “A lot of the groups that we see, parent admin groups, are echo chambers for despair.”
In fact, the group specifically rejects an approach that many therapists recommend, one which seeks to train children to abandon their autistic behaviors.
Founded in March 2018, Autism Inclusivity now has over 42,000 members. The group’s size means there are almost always members online asking or answering questions, with an average of 130 posts per day.
The group’s founders, Dalmayne and John Greally, first met in a Facebook group that Greally was running. The two of them are autistic. During Autism Awareness Week in March 2018, Dalmayne and Greally noticed that some parents of autistic children were being ostracized online. While the week is packaged as a celebration of autistic difference, some parents felt like they did not have much to celebrate, as their autistic children were more challenged and couldn’t do some of the things they were seeing in their online news feeds. Dalmayne and Greally decided to create a more accepting community, a space where autistic adults could help support parents of autistic children.
As the group’s about section puts it: “We are guessing you find it as hard as we do! You, because you see little to celebrate and us . . . because we are bombarded with blue lights and cure talk.”
The group plays a crucial role for families, Dalmayne said. “I have noticed that a lot of these parents are just desperate for help. So, when their child is diagnosed, they either go and look for autistic people and advice or they try to fix it. Because they honestly believe that autism has been caused by vaccines or the environment or whatever reason they want to make up to not blame themselves for the child’s neurology.”
The group specifically resists one common autism treatment, Applied Behavior Analysis (ABA), which is often recommended to parents of autistic children. ABA involves breaking down autistic behavior into pieces and then training children away from those behaviors. The therapy can use rewards or punishments, which include small electric shocks. Critics say ABA is cruel, ineffective, expensive, and time-wasting, according to a 2016 Atlantic article. While conventional wisdom among therapists is that ABA works, a number of academic studies (1, 2, 3) have found that ABA confers little or no benefit for most autistic children.
Many of the parents who join Autism Inclusivity are using or considering ABA. However, “the majority of parents that have come in that have used ABA or are using ABA usually abandon it once they’ve spoken to people who have been through it,” said Dalmayne.
Critics view ABA as predatory. Quoted in the Atlantic article, Ari Ne’eman, president of the Autistic Self Advocacy Network, says that the message coming from physicians and ABA therapists is “if you don’t work with an ABA provider, your child has no hope.”
The Facebook group counters that ABA is unethical, negating a child’s autonomy. “Would it not be considered abuse if a neurotypical child was forced against their will to ignore their own autonomy and comfort to obey the whims of an adult?” Dalmayne asked.
In contrast to ABA supporters, Autism Inclusivity advocates for inclusivity and the acceptance of neurodiversity, arguing that people with autism should be respected as naturally different rather than abnormal and needing to be fixed.
Many Facebook groups are filled with statements like “‘my child has autism’ or ‘my child is suffering with autism,’” said Dalmayne. In contrast, “When members join our group, I would hope they gain an acceptance of their autistic child above all.”
The community’s rules explicitly bar pro-ABA material and or “autism is a tragedy” narratives. Dalmayne said the group doesn’t allow pro-ABA content in the community because “many of our members have been exposed to ABA and have lasting trauma from it.”
A search of the group for “ABA” in the group returns many posts linking to articles questioning the scientific and moral standing merits of ABA. The articles range from published studies to personal stories from patients, parents, or ABA therapists. One study linked on the community page found that autistic individuals exposed to ABA are at increased risk of exhibiting symptoms of post-traumatic stress disorder.
Autism Inclusivity features parents seeking advice on taking care of autistic children. For example, when one mother in the Autism Inclusivity group asked:
How would you respond to a therapist recommending ABA?
- Woman, March 2021
Here are some of the responses group members gave:
These therapists aren’t a good fit with your values and do not respect your express wishes. Don’t go back.
- Woman, March 2021
I would leave asap.
- Woman, March 2021
Honestly they probably haven’t done enough research into what ABA includes. I’ve met several therapists/clinicians that are “against ABA” but then include ABA techniques in their practice without realizing it.
- Woman, March 2021
Fire them…. ABA practitioners use the “pairing” technique not only to bond with their clients, but the parents as well to establish instructional control. If you show any doubt or resistance to the method, you may feel guilted, coerced, gaslighted, or steam-rolled into submission.
- Woman, March 2021
Dalmayne, as well as the other moderators of Autism Inclusivity, are integral to the community. Every moderator of the group is an autistic adult, which helps easily connect parents with autistic children to autistic adults, who have a perspective and set of experiences that can often enable parents to support their autistic children in new or more productive ways. There is no formal way that new moderators for the group are chosen; Dalmayne said she’s only ever added good friends as moderators. Regarding the role of moderators, the expectation is “that they use kindness but firmness when dealing with members regardless of whether they are autistic or not,” said Dalmayne.
As a moderator, Dalmayne spends a minimum of four hours per day monitoring content, offering advice, and sorting through community applications. Unfortunately, it’s impossible to know everyone’s motives when they apply to join the community. “There are [voyeurs] in groups that I’ve joined…. . . . You can spot them quite easily though,” said Dalmayne when talking about the troubles of managing a large online group.
Many posts are from parents seeking advice on different questions or challenges.
In a Q&A post, one mother asked:
My 14yo daughter wakes every night around midnight and gets into bed with me for the rest of the night. She has been doing this for years. She is mainly non-verbal and I have not yet been able to communicate with her about this. Has anyone had experience with this? I don’t mind it, I just would like to better understand her needs.
Woman, January 2020
In response, an autistic member responded on the basis of their own experience:
For a while starting around age 9 I used to wake up feeling really ill, like I was going to throw up, I’d go wake my mum up and she’d hug me and I’d feel better. I never ended up being sick, and after a while started making myself a similar snuggle experience without waking my mum up to soothe myself when it happened (which went on for years). Looking back I think it might have been from some kind of anxiety or sensory issue. I still wake up in the middle of the night most nights, and have a weighted blanket that helps me get back to sleep. Maybe something similar happening here for your girl?
Man, January 2020
In January 2020, Dalmayne asked members to share what they’ve taken from the community.
One parent wrote:
This community helps me advocate for my son, it helps me understand him better and what he needs, how I can best help him.
Woman, January 2020
Another community member shared a contrasting takeaway:
This group is what led me to actually getting my diagnosis and finding that there are actually people who are just like me, people who are beginning to find people that I am accepted by.
Woman, January 2020
In addition to autistic people and parents of autistic children, medical professions benefit from the group. A speech-language pathologist shared how the community has helped his practice:
This community has really helped me evaluate my own ideas and language when discussing autism with clients, family members, families, members of the community.
Man, January 2020
Growing by 7,500 members a month in early 2021, Autism Inclusivity offers first-hand, unconventional answers to questions asked by people affected by autism.
