There’s a moment, 26 minutes and nine seconds into Disney’s Coco, when the film’s departed souls are trying to clear a customs desk in the afterlife. It’s a moment that Mary* can see clearly without looking at the screen. She’s seen Coco more than a thousand times, easy.
Mary’s sons, Ryder* and Murphy*, adore it. They light up when watching the film, pretzels in hand, and they stay, transfixed, right through to the end – the very end – every time. “My kids absolutely love credits,” Mary says, laughing.
At a young age Ryder, her eldest, was diagnosed with “non-verbal autism-spectrum disorder level three”, which requires a high level of support. Her second son, Murphy*, was diagnosed with the same condition as a toddler. The children, now six and four, have never spoken to their parents. They’ve never been able to vocalise that love of Coco, of pretzels, or of their parents. Not being able to communicate with her children is a challenge that, in a cruel irony, is hard for Mary to put into words.
“What I deal with on a daily basis,” she says, pausing. “It can break you.”
For the past six years, her life has been dedicated to supporting her two boys. When her mother died in an ICU in Sydney a few years ago, she barely had time to grieve. She drove back to her home in regional New South Wales, just hours after leaving her mother’s side, then removed all of the photos of her in the home. It was difficult to explain to Ryder and Murphy why they could see her in a picture frame but no longer FaceTime with their grandmother.
Mary speaks of the fear of leaving her home, her sons being excluded or whispered about. If they do make it to a shopping centre or a park, their senses can be overwhelmed and they melt down. Mary’s arms and legs bear bruises from trying to protect her sons from self-harming. The exhaustion is constant – one study shows stress levels in parents of autistic individuals are similar to those of combat soldiers and Holocaust survivors – and the lack of sleep leads to caregiver burnout.
This is a reality that Mary says impacts her family “every moment of every day”.
Her family is not alone. It is a reality lived in homes the whole world over.
It is into this reality that a new podcast, The Telepathy Tapes, appears. The 10-part series, which rocketed up both the Apple and Spotify charts at the end of 2024, offers an alternate reality for these parents, one in which autistic children who speak few or no words “possess gifts that defy conventional understanding, from telepathy to otherworldly perceptions, challenging the limits of what we believe to be real”.
At first blush, The Telepathy Tapes seems exactly like the kind of hope Mary might be looking for, presenting a way to communicate with a child she has never heard speak. Guardian Australia spoke with seven parents and caregivers of autistic children. Two were excited by the podcast and hoped it would – at least – spark further curiosity and research. But when Mary first heard The Telepathy Tapes, she was horrified. “For something like this to exist is devastating and alarming,” she says.
As hopeful as The Telepathy Tapes sounds, the Guardian also spoke with seven prominent autism researchers and clinicians. All were resolute in their analysis of the podcast: it is based on a long-discredited methodology, they said.
‘We are talking about telepathy’
The Telepathy Tapes is a slick, modern production, structured like some of the best first-person, investigative podcasts of the last decade. It has the DNA of Serial, with a sprinkle of Casefile. The host, Ky Dickens, is a US film-maker and self-proclaimed “science nerd” who places herself in the role of investigator, attempting to unearth the truth about telepathic powers in autistic individuals.
In her pursuit, she teams up with Diane Hennacy Powell, a psychiatrist and longtime advocate of psychic phenomena. Powell has long believed autistic spellers, with savant skills, would be able to prove telepathy. In The Telepathy Tapes, Dickens and Powell embark on a global tour in which they meet a handful of autistic people with high support needs – Mia, Houston, Akhil and others – and put their abilities to the test.
Take Mia, a 12-year-old Mexican who listeners meet in the first episode. Powell first hears of Mia’s ability to read minds through an email from Mia’s cousin, Sofia. Before long, Dickens and Powell have flown the family in from Mexico to the US, set up cameras in an Airbnb and started testing Mia’s ability.
They put a blindfold on Mia, then show her mother a random number between 100 and 999, generated on a smartphone app. Powell shows the mother the first number: 698. Dickens narrates as Mia takes her blindfold off, then types the numbers out on a letter board. 6-9-8. Dickens is stunned. Another test follows: Mia’s mother opens a book to a random page, without Mia seeing. Mia types out a character presented on the page: a pirate. Another perfect result.
What Dickens doesn’t explain to listeners of the podcast is how Mia performs these feats. Fortunately, the whole thing was filmed, though that video is behind a $9.99 paywall on The Telepathy Tapes website. It’s in those videos that the methodology of The Telepathy Tapes becomes clear.
Mia is a “speller”, a term used to describe those who communicate with the help of a letter board or other device in which they can tap out words letter by letter. Typically, this type of communication requires a partner, someone to hold the letter board and assist the speller. This type of communication is known as “spelling to communicate” (S2C) or the “rapid prompting method” (RPM).
Both S2C and RPM are considered evolutions of facilitated communication (FC) – a 50-year-old practice that has been roundly discredited. “In the peer-reviewed, published research, it’s been pretty thoroughly debunked over and over again,” says Dr Jessica Paynter, associate professor in the school of psychology at Griffith University.
The chief problem researchers and experts have with FC and its offshoots regard authorship. Rigorous, controlled scientific studies have found it’s typically not the autistic person who is writing or typing the messages – it is the facilitator or assistant. In some cases, this assistance requires holding the autistic person’s hand or shoulder or arm. In other cases, as with Mia, it involves them holding the letter board, and parts of Mia’s face, such as her chin.
Many professional health organisations around the world have denounced the use of FC. Raising Children, an Australian government-funded website for parents, classifies FC as “ineffective or harmful”. The American Psychological Association adopted a position that FC is “a controversial and unproved communicative procedure” in 1994. The UK’s National Institute for Health and Care Excellence says parents and caregivers should not be offered FC because “there is no evidence that it helps people with autism”.
Though advocates of S2C and RPM suggest methodologies have come a long way in the past 30 years, there remains a lack of robust evidence that FC is reliably producing the words of the autistic person rather than their facilitator.
“There’s no strong evidence or rigorous, double-blinded checks that it is the person’s true communication,” Paynter says.
Dickens suggests newer methodologies lead to independent communication. “Many of the critiques being levelled at spellers rely on outdated studies or methods that don’t reflect how spelling looks today,” she wrote in an email to the Guardian.
“Many spellers now type independently or with minimal support, across contexts, with their own language and personality shining through.”
Three of the clinicians and researchers the Guardian spoke to are concerned that focusing on the methods platformed in The Telepathy Tapes could limit the use of evidence-based approaches.
“I firmly believe we can achieve all of the same outcomes proponents of FC/RPM are seeing without the fundamental risks to human rights, health, learning, participation and wellbeing these approaches pose,” says David Trembath, a professor of speech pathology at Griffith University.
When we speak to Andrew Whitehouse, a professor at the Kids Research Institute and one of Australia’s foremost autism researchers, he has just finished a session with a family whose autistic child with high support needs wears a helmet because he often bangs his head against the wall.
“This wonderful child and his family are in such distress, and they need support,” he says. “Instead, we are talking about telepathy.
“Programs like The Telepathy Tapes steal time, attention and energy away from what truly matters – valuing children and families as they are, and doing all we can to support them to live their best lives.”
Dickens says she takes the concerns of clinicians seriously and appreciates that many have dedicated their lives to supporting nonspeaking people. “I did speak with scientists – cognitive neuroscientists, speech pathologists, linguists and even sceptics,” she says, and notes some declined to go on the record. But she sees spelling as a positive.
“Many of these families have gained resources – hope, connection and joy – through spelling. We should ask why that’s happening, be in conversation with spellers themselves and not assume it’s all delusion or deception,” she says.
A ‘fad magnet’
There is no single identifiable cause of autism. It follows, given the varied experience and impairment of autistic individuals, that there is no one-size-fits-all treatment. Clinicians and therapists are trained to select the best evidence-based methods for supporting individual clients but they often take time and energy to implement.
Against this backdrop, misinformation proliferates – so much so that autism has been labelled a “fad magnet”. Dolphin-assisted therapy, chelation, the use of essential oils, magnets and a host of special diets have been touted to help autistic people; these are often marketed with emotional anecdotes or endorsed by celebrities.
Howard Shane, a practising clinician at Boston Children’s hospital, has worked with autistic children since 1975 and sees almost 300 autistic individuals every year. He has seen fads come and go but notes facilitated communication has been particularly persistent.
“You look at all of the different pseudoscientific strategies [that] have been thrown at these individuals for decades and decades – it’s one thing after another,” Shane says. “I think we’ve come to the height of it with The Telepathy Tapes.”
Joe and Paige*, parents to a profoundly autistic son, say they have often seen parents of autistic children with high support needs tempted to try anything that might help because they have been let down by healthcare, education and social security systems that are not built to support them or their children.
“Parents often live in a perpetual state of exhaustion and are easy prey for people who promise the world and the glimpse of hope that might ease the suffering,” they say. This is something Mary echoes; she has to constantly prove her sons are worthy of support from the NDIS, Australia’s national disability support scheme.
In contrast to this dismissal, Dickens says her podcast centres autistic individuals “voices, autonomy and humanity”. “To me recognising someone’s full personhood means being open to their version of the truth, even if it disrupts our assumptions.”
Three parents who had listened to The Telepathy Tapes did not wish to speak on record. Several said they were wary of experts who dismissed The Telepathy Tapes, FC or S2C and their own lived experience. They also accused opponents of the practice as being ableist and not presuming competence in autistic individuals. Two had used spelling to communicate with their children and suggested those who criticised or dismissed the technique had a financial incentive to discredit the practice.
Paynter, who researches misinformation surrounding autism treatments and sees autistic clients in private practice, has seen this argument before; but says specialists are in no need of more business. “There’s more than enough work for everyone.”
She says specialists have no incentive in debunking treatments – if something worked, she’d want to see it put into practice.
“All of us working in the field, we want to do anything that could help autistic children to communicate, to self-advocate and to have their needs met,” Paynter says.
Parents, too, will do anything to help their children communicate, to self-advocate, to help them achieve independence. That unites those who champion spelling to communicate and those who use evidence-based approaches. All these parents strive, constantly exhausted, to support the people they love most.
Dickens, too, appears eager to help the families she has met. Her podcast, she says, is “an invitation to re-examine long-held assumptions, and to listen – deeply – to people whose voices have been silenced for too long”.
