TW: This blog post will talk about harmful autism symbols, ABA, eugenics and controversial harmful alternative autism treatments. If you are not in a place to handle this, that is 100% okay – I appreciate you clicking the link to check this out, please feel free to close the tab and go do some self-care. Your mental health is the most important thing first and foremost, please take care of yourselves.
Flex Watches is a brand with a cause, who produces watch collections that support different charities – it’s an admirable cause to see a company wanting to intentionally build their entire platform off raising money for charity and making a difference.
Update – 18 December 2021
Since this original post was shared, and we reached out to @flexwatches on social media, they have blocked me, as well as multiple other #actuallyautisitc creators who have reached out on multiple platforms. So at this point, they are very much aware of the fact that they have made problematic choices, as told to them by multiple autistic creators, and are actively choosing to ignore us, silence us and continue their harmful actions. This is incredibly disappointing, and I highly recommend that no one engages in buying any of their products or consume their content or any content created by their founder, Travis Lubinsky (@trav).
Flex Watches have released an autism collection
Their most recent charity collection launch is an autism launch. Their main tiktok promotion video for the product looks promising for the autistic community, with it featuring the “Autism Infinity Black” variant of their watch:
However, opening their website and doing some digging reveals multiple problems, and it shows that while companies may have good intentions, they need to do more than 5 minutes of research to find the first autism charity and actually speak to autistic people on how to represent us and raise awareness and acceptance around autism.
The first thing you find as an autistic person opening their website to look at this collection is that while it is awesome that two out of the four watches are using the infinity symbolism that the community has stated it prefers, in a black and white variant, the other two variants are both based around puzzle pieces. The other two variants are also unique and different – showing that more effort was put into designing the other two puzzle variants than those of the infinity logos, which was just a colour switch.
Their four watches are:
- “Autism Classic”, with that titling made worse by the fact that it is a puzzle piece design:
- “Autism Heart”, which is another puzzle piece design
- Autism Infinity White, a white version of the watch featured in the TikTok promo with the infinity symbolism
- And finally, Autism Infinity Black, as featured in the TikTok promo video
The problem with the designs – specifically the puzzle pieces
If this company had done any research, they would find that the autistic people, the puzzle piece is a negative symbol, with some going as far as to say that it is a hate symbol. It represents negativity about autism, used by organisations that frame autism as a tragic disease that requires a cure. It also represents us being “puzzling”, a “puzzle to solve that can’t be worked out” or “missing a piece”. The puzzle piece is most closely associated with Autism Speaks currently, but has its roots as a symbol used for the autism community back with the National Autism Society.
However, I think the sad thing is that they have done some research – enough research to include a design that is the infinity symbol and a lazy colour flip of it. So that leaves me with deep disappointment that they clearly have enough knowledge that the infinity symbol is a symbol for autism, but have produced puzzle piece merchandise as well. This is ironic, given that the Autism Society of America, the root organisation for the Autism Society of San Diego, which they are raising money from, have deliberately moved away from using the puzzle piece imagery in their new rebranding recognising that it is disliked by the autistic community.
However, the organisation’s lack of use of the puzzle piece logo themselves doesn’t mean that they aren’t an incredibly problematic organisation and the wrong choice to be the recipient of money raised for autism support.
Who is the Autism Society of San Diego, and by extension, the Autism Society of America?
The Autism Society of San Diego is an affiliate sub organisation of the larger Autism Society of America. The Autism Society of America has rebranded itself and was originally called the National Society for Autistic Children. It has an extremely dark history and is not an association that should be supported or celebrated by a company that has good intentions to try to help autistic people.
The Autism Society was founded by Bernard Rimland, as advertised on their website. Interestingly, it appears that the Autism Society has worked hard to erase mention of the fact that Ivar Lovaas was also involved as a co-founder of this organisation, with proof of this being able to be found in the Autism History Project hosted by the University of Oregon, as well as proudly on their Wikipedia page as a founder. These two men have the legacy of their work that continues to this day harming autistic people.
Who is Bernard Rimland?
Bernard Rimland (1928-2006) was an American research psychologist and influential person in the field of developmental disorders, specifically autism. He promoted several problematic theories about the causes and treatments of autism, many of since have been debunked.
In his 1964 book “Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior”, Rimland claims that it was biochemical defects triggered by “environmental assaults” that was causing children to be autistic, with it being able to be “treated” with biomedical and behavioural therapies.
Rimland was a vocal believer that vaccines were a key component in the cause behind autism, linking the increase of late-onset autism during the 1980s with the introduction of the MMR vaccine (a claim that both the CDC, AAP and AMA did not support), and supported Andrew Wakefield’s now debunked research claiming to prove this link.
He supported the use of Chelation therapy, which is a treatment for lead and heavy metal poisoning, for autistic children, which is a treatment that neither the American Academy of Pediatrics nor FDA support. Chelation therapy can lead to low blood pressure, cardiac issues, seizures, brain damage, liver damage, kidney damage, dangerously low calcium levels and anemia, with many parents choosing to undertake this treatment at home without any medical supervision which increases these risks. Studies have concluded that there is no clinical trial evidence to suggest that pharmaceutical chelation is an effective intervention for autism, and the risks outweigh the benefits – this includes reviews of studies such as a 2013 systematic review paper and 2015 study.
Described as his greatest achievement to the autism community however was his championing of Ivar Lovaas’s Applied Behavioural Analysis approach, and promotion of the use of aversives within this therapy – to the point where he was a vocal advocate against the Hughes Act, legislation that restricted the use of aversives.
Rimland founded the Autism Society of America in 1965 under the name National Society for Autistic Children, and the Autism Research Institute in 1967.
He also went on to found the program Defeat Autism Now! (DAN!) in 1995 under the Autism Research Institute, another harmful program for autistic people. DAN! advocated for alternative treatments for autism, and was a prominent advocate for the vaccines cause autism belief, as well as the use of chelation therapy. The DAN! program was discontinued in January 2011.
Who is Ivar Lovaas?
Ivar Lovaas (1927 – 2010) was a clinical psychologist and professor. He is most well known for his lasting legacy of the practice of Applied Behaviour Therapy (ABA), and its use to treat autistic children. I have an entire blog post with resources on why ABA is bad, current studies indicate it does not work, and that it is linked to PTSD for autistic people here.
Lovaas’s development of ABA was based on operant conditioning and discrete trial training, used to teach listener responding, eye contact, fine and gross motor imitations, receptive and expressive language, and a variety of other skills he perceived autistic children lacking that neurotypical children held. The method he would use to do this would be an instruction, a prompt, the child’s response, and a stimulus reinforcer, with physical aversives employed as reinforcers.
As time goes on, scientific research-backed support for ABA has begun to wane, with 2007 and 2008 studies that promoted ABA as a positive evidence-based treatment turning into a 2018 review indicating low-quality evidence supporting ABA, a 2019 government study of over 16,000 participants, as well as its 2020 government study follow up stating that ABA was not effective, a 2021 journal article calling ABA abuse and a 2021 journal article pointing out that research into ABA often did not focus on or disregarded the harms caused.
Lovaas’s attitude towards autistic people was that autistic children were not even children, stating:
“You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense – they have hair, a nose and a mouth – but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”
Lovaas was also known as one of the pioneers of adapting ABA methods as conversion therapy for LGBTQ+ people, being the co-founder of UCLA’s “Gender Identity Clinic” with George Rekers. Their first study subject, a young boy who was 4 years old at the time of the study showing feminine behaviours whom they attempted to “convert” out of him, committed suicide as an adult in 2010 with the suicide being attributed to the treatment.
Lovaas was the co-founder of the Autism Society of America, as well as founding the Lovaas Institute.
Who are the Autism Society of America today?
The Autism Society of America states on their webpage that for over 55 years (and counting), their nationwide network of affiliates and their core organisation has connected autistic people to the resources they require, provided education, advocacy, support, information, referral, community programming, and raised public awareness about autism issues.
However, what they fail to mention in their airbrushed public media image is the damage that their organisation also does.
Combating Autism Act/Autism CARES Act Support
The Autism Society is known for being one of the largest advocates for the Combating Autism Act . This Act was signed into law in 2006, spending nearly one billion dollars over 5 years beginning in 2007 to “combat autism spectrum disorders”. This “war on autism” approach allocated large amounts of money on research in biomedical research on autism for cures and treatments, giving very little funding for the education and services that would help autistic people. This Act turned into The Autism Collaboration, Accountability, Research, Education and Support Act of 2014 (also known as the Combating Autism Reauthorisation Act or Autism CARES Act) which authroised $1.3 billion in funding between 2015 – 2019. This Act was a reauthorization and continuation of the existing Combating Autism Act that expired in October 2014, and was further reauthorised in 2019 as the Autism CARES Act of 2019, continuing the funding in the U.S.’s war on autism.
As part of The Autism Society’s ongoing support of this Act, they coauthored a letter with two other well-known problematic autism organisations, AUCD and Autism Speaks, encouraging the passage of the Autism CARES Act of 2019 as a top priority for their organisations. The entire point of the Autism CARES Acts were to “combat autism” and eliminate our community, which means any organisation vocally supporting this is incredibly problematic and actively participating in harm towards autistic people.
Support of harmful people to autistic people in positions of power within their organisation
The Autism Society of America also chooses to continue to align itself with significantly harmful people within the community, with their San Francisco Bay Area chapter having Jill Escher as a non-board committee member and previous president of the chapter, also being the president of the ableist organisation “The National Council on Severe Autism”. Escher actively states that neurodiversity advocates focus too much on the positives of autism and not on the difficulties and “bully and terrorise” people with “severe autism” and their families into silence. See more on why functioning labels like the ones that Jill Escher uses are extremely harmful here.
The Autism Society of America is not an autistic led organisation and does not have the majority of their board members being autistic. They have a “Council of Autistic Advisors”, made up of 11 autistic people, with only one of those 11 being on the Board of Directors.
Even more concerningly, is the panel of professional advisors that they rely on for expert decisions for the board members to make their decisions. Knowing that the majority of the board members are neurotypical people, the quality of the professionals they have chosen to take advice from, knowing the fields they work in are extremely harmful to autistic people, is deeply concerning for the quality of the organisation. A sample of those 25 professional advisors are:
- Barbara Becker Contrill is a BCBA.
- Barry G. Grossman is the co-owner of the Ziggurat Group, which specialises in the use of a model that advertises itself as using practices consistent with those found in PBIS (which is a form of ABA)
- Bennett Leventhal‘s current research focuses on the molecular genetics of autism and the prenatal origins of “disruptive behaviour disorders” in order to treat ADHD and autism
- Christine Reeve is a BCBA as stated on their board member page.
- Diana Twacthman-Cullen currently servces on the ABA commission of the Panel of Professional Advisors.
- Amy Van Hecke‘s current research focuses on the effects on social skill programs such as PEERS and improving access to them for underserved children. The Therapist Neurodiversity Collective has spoken out on multiple occasions on why therapists should not use commercial social skills training programs, why you shouldn’t train social skills to autistic kids, and the negative research on the results of social skills training.
- Cathy Pratt is a BCBA per the board member page on the Autism Society website.
- Geraldine Dawson served as Chief Science Officer for Autism Speaks, and currently serves as the Director for the Duke Center for Autism and Brain Development at Duke University, working in the Department of Psychiatry and Behavioral Sciences. One of her most noteable pieces of work is co-developing the EDSM model of early intensive interention for young autistic children, which is based on using strategies of ABA.
- James Bell is a BCBA.
- Gary LaVigna is the co-founder of the Institute for Applied Behaviour Analysis.
- Jack Scott is a BCBA and serves as the area program coordinator for the Association for Behaviour Analysis in Florida.
- Jennifer Twatchman is the co-chair of the panel’s ABA commission.
- Kathleen Quill is a BCBA.
- Kristie Brown Lofland is an autism/educational consultant in private practice who recommends ABA methods to her clients
- Marc Ellison is the executive director of the West Virginia Autism Training Center, located at Marshall University. This center provides social skills training and PBS trainers and plans as well as helping to implement school wide PBS and early childhood PBS structures (with PBS being a form of ABA).
- Patricia Wright is a BCBA who was previously a member of the Board of Directors for the Association of Professional Behavior Analysts. She currently has a role at NEXT for Autism, another problematic ableist project that the autistic community have been vocally against.
- Ruth Aspy is the coauthor of the Ziggurat Model with Barry G. Grossman, another panel member. As mentioned, the Ziggurat Model promotes itself for its use of similar practices of PBIS, a known form of ABA.
- Stephen Edelson is the director of the partner organisation, the Autism Research Institute, also founded by Rimland, which believes autism is treatable and conduct research in an attempt to find a cure. He has published peer revieewed research articles in the field of autism research along side Bernard Rimland, Ivar Lovaas and Temple Grandin, all known to cause harm to autistic people with their research.
- Stephen Shore is an autistic man himself, one of the few that sit on the panel of professional advisors. However, this does not exempt Shore from being a current board member of Autism Speaks, a deeply problematic organisation, which is disappointing to see.
- Susan Kabot is the executive director of NSU’s Autism Institute, overseeing programs that utilise ABA as a therapy method in multiple programs.
As you can see from that list, the idea of “professional advisors” is people who cause active harm to autistic people – not exactly the people I’d want professional advising an autism organisation I was supporting to try and raise money to support autistic people.
Support of eugenics projects
The Autism Society of America also supports SPARK for Autism, the largest autism research study ever with over 250,000 participants. However, SPARK for Autism quickly became known as a study that was using genomic datasets from autistic people and their families without their informed consent in the exact ways it would be used. SPARK will pass your DNA to other researchers without your consent in order for a cure to be researched, without telling you which. researchers have your DNA, and without any way to withdraw your DNA from their database. SPARK is not gathering DNA to be understanding or inclusive – they are using it to find the common genetic lines that correlate with autism and use them in eugenic methods.
Steps forward, but still are problematic
While the Autism Society of America has attempted to take steps forward, such as rebranding after recognising that their brand was alienating the autistic community, adding self-advocacy and education resources to their website and making an effort to add limited autistic members to their boards, they have historically been focused on treating and curing autism rather than helping autistic people with this focus seeming to remain the same today. Their September 2019 position statement on the state of science in autism reflects this, with a focus on pathologising language and the avoidance of a child being born autistic.
Conclusion
If organisations like Flex Watches truly wanted to raise money to support autistic people and the autistic community, they would do some basic research into the organisations they could donate to, or reach out to the autistic community and ask – plenty of wonderful autistic people have made quick reference infographics specifically for this purpose.
Releasing watches with puzzle pieces, and supporting problematic charities built off the back of an abusive therapy with the goal of finding a cure for autism doesn’t feel like genuine support – it feels like a half-hearted slap in the face.
The Forest Blossom Memoirs 