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A great reading about Positive Niche Construction. AHA : Modifying environments to ensure success. I would follow the steps laid out in armstrongs article to first collect data and use that data to design learning that best fits the learner.

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A great reading about Positive Niche Construction. AHA : Modifying environments to ensure success. I would follow the steps laid out in armstrongs article to first collect data and use that data to design learning that best fits the learner.

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Autism manifests itself across a spectrum, with a wide range in cognitive, emotional, social, behavioural and affective domains. 

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Autism manifests itself across a spectrum, with a wide range in cognitive, emotional, social, behavioural and affective domains. 

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A time and a place for takiwatanga - Keri Opai (Taranaki). How the kupu 'Takiwātanga' was formed in 2017

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Racism filled schooling for Keri Opai but there was discrimination against anyone who was different, including those with autism. Today he has come up with a Māori word for 'autism'. He explains the interpretation and the journey taken in creating it.

Ko Taranaki te tupuna maunga, Parininihi ki Waitōtara, Waitōtara ki Taipakē.

WHAT IS THE Māori word for 'autism'?

Is there one?

Yes. It is part of a glossary I've produced for Māori language use in the Mental Health, Addiction and Disability sectors.

The resource creation project is called 'Te Reo Hāpai - The Language of Enrichment.'

The word I have coined in te reo Māori for autism is 'Takiwātanga'. It is a derivation of my phrase for autism: "tōku/tōna anō takiwā" - "my/his/her own time and space".

I am sure many people have harrowing war stories about difficult times at school.

All throughout my schooling from a little boy, racism was a constant, pervasive aspect of student life but going hand in hand with the racism was the umbrella discrimination against anyone that was different.

Different from the Pākehā, privileged, multigenerational farming families.

That included a group of secondary school students cruelly jeered at and demeaned who had any disability. From kids having cerebral palsy to being in a wheelchair to stuttering, these underprivileged were ostracised, criticised and berated at any given time.

They were cast aside and sometimes beaten up for no real rhyme or reason except to make the bullies feel better about themselves and their own inadequacies.

Feeling some sort of connection with other young people who were different and shunned, I would sometimes play games and socialise with members of the group. I especially liked a guy called Peter who happened to have autism. He was funny and musically talented and we got on well.

Unfortunately, most of the rest of the school didn't feel the same way and poor Peter was bullied no end. If I saw it going on I would stand in the way and tell the bullies they had to come through me first. Of course, they never would take me up on the offer because they were cowards and afraid of getting a hiding.

This was my introduction to autism and the misunderstanding surrounding it. So, when I took on the privilege and burden of creating a Māori word and concept to describe it, my first thought was that I wanted to honour my life-long friend, Peter.

Peter is still a good friend of mine and other than honouring him, and the struggle that people with autism like him can go through, I needed to talk with others who had knowledge and experience that could help me with a Māori interpretation.

I talked with a couple of clinicians but their perspective was always, not unsurprisingly, clinical. Lots of jargon and terminology that was always rather removed and sterile and polysyllabic words that would threaten to squash an elephant with their weight.

I talked with John Vogenthaler, the resident expert at my organisation Te Pou o te Whakaaro Nui, which was really helpful and he put me in touch with Matt Frost, a really neat person with autism who was also a researcher and policy analyst. We arranged to meet at Matt's favourite café and we spent a good couple of hours just chatting and sometimes talking specifically about how he experienced his autism.

Sitting there and talking for hours it reminded me very much of when I would spend time with kaumātua (Māori elders) and their style of teaching/informing/sharing. The conversation would meander and sometimes become tangential but if you leaned in, really listened, got into the same timing and rhythm, there were pearls of profound wisdom aplenty.

This is what I based my interpretation on; that people with autism tend to have their own timing, spacing, pacing and life-rhythm. I recalled times with my mate Peter doing things like going to the movies where he would laugh loudly at some parts that weren't intentionally humorous and my time with Matt and other people with autism I've known in my lifetime and this seemed to be the best way to describe the experience. As well, it seemed quite a positive way of explaining it and that is very important to me and essential for the Te Reo Hāpai resource in creating clear, correct and appropriate Māori language for now and the future. Hence, 'Takiwātanga'.

As my kaumātua says: "He mana tō te kupu" - "Words have great power."

I hope my interpretation pays adequate respect to caregivers and people, friends and whānau with autism.

Tēnā tātou katoa

Keri Opai is Paeārahi - Māori strategic lead at Te Pou o te Whakaaro Nui where he guides responsiveness to, and engagement with, Māori people, organisations and iwi. His experience is predominately in education and he has taught te reo Māori and tikanga Māori since he was a teenager. He is a licensed interpreter and has a Master's Degree in Mātauranga Māori (Māori Knowledge).

This article first appeared in the Altogether Autism Journal issue 2, 2017.

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A time and space for Takiwātanga - Altogether Autism

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Māori word for autism is 'Takiwātanga': "tōku/tōna anō takiwā" - "my/his/her own time and space".

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Takiwātanga Resource Prioject Providing Mana-Enhancing Resources Related to Takiwātanga. 

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Takiwātanga Resource Prioject Providing Mana-Enhancing Resources Related to Takiwātanga. 

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What is it?

Altogether Autism and Kanorau are working together to develop and provide culturally appropriate Takiwātanga (Autism) resources for the community, whānau, hapū and iwi.

We Aim To

Provide credible and up to date information to whānau Māori around Takiwātanga.

Invite open feedback, reflection and discussion to amplify and extend the voices of whānau Māori to express their understanding of Takiwātanga.

Create free learning resources to develop relevant information and share knowledge through a Te Ao Māori lens on Takiwātanga.

Create resources that can be used by Tāngata Whaitakiwātanga, whānau and professionals who engage and support Tāngata Whaitakiwātanga and their whānau.

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Takiwātanga Resource Project - Get Involved Today

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Altogether Autism and Kanorau are working together to develop and provide culturally appropriate Takiwātanga (Autism) resources for the community, whānau, hapū and iwi. Learn more about how you can get involved.

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Jessica and Tuhoro and their son Te Aurere. This is an article about their journey.

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Jessica and Tuhoro and their son Te Aurere. This is an article about their journey.

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Being in lockdown made Jessica Hita and Tuhoro Paki realise they have the necessary skills, knowledge and experience to help their autistic son Te Aurere Hita-Paki on his takiwātanga journey. This is their story, one year on.
We would not have imagined how things would pan out for us.

Though one thing remains the same, lockdown for us was a huge blessing. All that we had achieved, all that we learnt and the time we got to spend with Te Aurere, we've realised not to take those precious moments for granted.

As we settle in to 2021, no longer with Nana, Koro, Uncle and Big Cousin by our side (well not physically at least, as we are no longer under the same roof), we return to work full time and Te Aurere and his sister Te Ata Hāpara back at kohanga, time just seems to be passing by. It all seems so chaotic at times, though we constantly remind ourselves that despite the rat race, despite the challenges and hustle and bustle of work we must remain committed to the time and effort we put in to spending time with Te Aurere, Te Ata Hāpara and with each other. We know all that we can achieve when we are giving each other time and so that remains constant.

After lockdown we made the decision to purchase our first whānau home, I guess you could say it was a celebration gift of making it through level four lockdown, that partnered with a dream that we had been working towards for quite some time. It proved challenging at first, we had just spent a large part of our lives living under one roof with all Te Aurere's favourite people, now here we were moving into our own home as just our little whanau of four.

We had some concerns on how Te Aurere might manage with the change, with a new home, new environment, new neighbourhood and no longer having Nana & Koro by his side, though he has managed it well, we all have. It's a place Te Aurere knows is his home, a place he is extremely comfortable and very familiar with, bonus is it's only two minutes from his kōhanga and Nana & Koro not too far away either, so we are over at their house weekly. Again, he has surprised us with his ability to adapt to change and a reminder that he is capable of several things that we worry about.

Te Aurere turns 5 this year in July and we often get nervous of the thought that he will be off to a new Kura and that he will no longer be our little baby anymore, so we are currently in the process of visiting kura and trying to find one that fits for him. We admire his Kaiako, his kōhanga and especially his whaea marahia, who since returning from lockdown has been with him every day supporting us as a whānau and guiding Te Aurere through his day-to-day tasks. Lockdown helped us appreciate the importance of routine, time and effort when it comes to Te Aurere and his development.

He has his days, but we've been fortunate as a whānau and with the support of kōhanga to establish routines and working weekly to achieve some huge milestones especially with Te Aurere's vocabulary. He has continued to grow and surprise us, he loves dancing to music at home, at kōhanga and at McKenzie Centre which we are still visiting weekly with our key support worker Suzanne.

We are now working with her to organise school visits for Te Aurere. It's very daunting, the prospect that he will be off to big boy school, but at the same time we know that the support we have received from whānau, kōhanga, kaiakao, Suzanne and the McKenzie Centre, Te Aurere will be more than ready when the day comes. We truly are empowered to take on this new adventure as daunting as it does seem.

A lot has changed but still plenty has remained the same, a new home and new job for Māmā working at a new law firm which has taken up a lot of time and energy, however change is exciting for our whānau. As Te Aurere and Te Ata Hāpara grow older we are reminded how precious time is, time spent with each other, time spent with whānau and friends and were reminded to never to take a day for granted, that's certainly something we learnt during the COVID19 global pandemic.

Jessica Hita is a lawyer with Tukau Law

Tuhoro Paki is a settlement and claims advisor at Waikato-Tainui

Te Aurere Hita-Paki, is 5 in July and was diagnosed in 2019.

Read Life in a Pandemic

This article appeared in Altogether Autism Journal 2021.

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A year on from Life in a Pandemic - Altogether Autism

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Being in lockdown made Jessica Hita and Tuhoro Paki realise they have the necessary skills, knowledge and experience to help...

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Evidence Based Resources

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Modules to support EBP.

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We are excited to announce that a new module, Augmentative and Alternative Communication (AAC) and Autism, has been launched. This module focuses on selecting and implementing AAC to support autistic learners in their ability to effectively express themselves, develop and maintain relationships with others, and engage in their community.

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Modules to support EBP

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AFIRM Modules are designed to help you learn the step-by-step process of planning for, using, and monitoring an evidence-based practice (EBP) with learners on the spectrum from birth to 22 years of age. Supplemental materials and handouts are available for download.

Download an overview of the Components of AFIRM to learn about modules, resources, and professional development options.

Visit the Learn with AFIRM section to find out more.

To learn more about the updated EBPs, check out the National Clearinghouse on Autism Evidence and Practice website.

Introduction to Autism

Selecting an Evidence-Based Practice

AFIRM for Paraprofessionals: Simulated E-Learning

These simulated learning modules include brief overviews, video examples, and activity-based scenarios to learn foundational EBPs.

Reinforcement: Introduction & Practice

Prompting: Introduction & Practice

Supporting Peer Interactions: Introduction & Practice

Time Delay: Introduction & Practice

Visual Cues: Introduction & Practice

AFIRM for Toddlers

AFIRM for Toddlers are a set a of modules developed in collaboration with the Early Childhood Technical Assistance Center for early interventionists working with toddlers, families, and early care providers.

AFIRM for Toddlers Introduction

Behavior Supports for Toddlers

Naturalistic Interventions in the Child Care Setting

Parent-Implemented Interventions in the Home Setting

Reinforcement

Prompting

Visual Supports

Available Evidence-Based Practice Modules

The National Clearinghouse on Autism Evidence and Practice (NCAEP) identified 28 EBPs based upon a systematic review. The EBP modules are designed to help you learn the step-by-step process for planning for, using, and monitoring an EBP with learners with autism from birth to 22 years of age.

Augmentative & Alternative Communication

Antecedent-Based Interventions

Ayres Sensory Integration®

Behavioral Momentum Intervention

Cognitive Behavioral Intervention

Direct Instruction

Differential Reinforcement

Discrete Trial Training

Exercise

Extinction

Functional Behavioral Assessment

Functional Communication Training

Modeling

Music-Mediated Intervention

Naturalistic Intervention

Peer-Mediated Instruction & Intervention

Parent-Implemented Intervention

Prompting

Reinforcement

Response Interruption/ Redirection

Self-Management

Social Narratives

Social Skills Training

Task Analysis

Technology-Aided Instruction & Intervention

Time Delay

Video Modeling

Visual Supports

Available Supplemental Modules

Several EBPs identified in the previous review (Wong et al., 2014) were recategorized or reclassified in the most recent review by the National Clearinghouse on Autism Evidence & Practice (see Steinbrenner et al., 2020, p. 30 for details). The four modules below will remain available for AFIRM users as supplemental materials:

Picture Exchange Communication System

Pivotal Response Training

Scripting

Structured Play Groups

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AFIRM Modules AFIRM Modules are designed to help you learn the step-by-step process of planning for, using, and monitoring an evidence-based practice (EBP) with learners on the spectrum from birth to 22 years of age. Supplemental materials and handouts are available for download.

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An article about the 'vaccines cause autism' theory.

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"The press discharges vital functions as a bloodhound as well as a watchdog."
- The Court in Reynolds v Times Newspapers, October 1999 [Long-read summary: 4,000 words]
With revelations scattered across seventeen years, between 2003 and 2020 Brian Deer pursued a landmark public interest investigation for The Sunday Times of London, with spin-offs for a UK TV network and the British Medical Journal, into allegations linking the measles, mumps and rubella vaccine (MMR) with brain and bowel damage in children.

At the time Deer began, with an empty reporters' notebook, Britain had been gripped by years of controversy over the three-in-one MMR - spawning epidemics of fear, guilt, and infectious disease, exported to the United States and many other countries, fuelling every kind of confusion about vaccines.

British news headlines of those days powered the scare:
NEW TESTS 'CONFIRM THE LINK' BETWEEN MMR AND AUTISM
- Sunday Express
THE QUESTION EVERY PARENT IS ASKING
- Daily Mail
CRYING SHAME OF THE VACCINATION VICTIMS
- The Sunday Times

Almost incredibly, the prime source for such concerns - which in the 2020s would go on to seed global "anti-vax" networks opposing covid-19 shots - was a mere five-page research paper blaming MMR for autism published in February 1998.

Follow Brian on Twitter:

Written by a then-forty-one-year-old academic researcher, Andrew Wakefield, co-authored by a dozen associates (who played little or no part in it), and published in the prestigious Lancet medical journal, this paper reported on the anonymised cases of twelve children with apparent developmental issues - most of whose parents were said to finger MMR.

Backed by a twenty-minute video news release and a breathless press conference organised by Wakefield's employers at the Royal Free Hospital Medical School in Hampstead, north London - the four-thousand-word paper provoked heavy media interest and was followed by a campaign he led.

This included further Wakefield publications criticising MMR, leading to a collapse in public confidence in the shot, which, since the late 1980s in the UK (and the early 1970s in the US) has been given routinely to children at the age of one or soon after, almost eradicating measles and rubella from developed countries.
READ HOW DEER'S WAKEFIELD
INVESTIGATION WAS CHECKED
The loudest alarm were findings reporting that the parents of two thirds of the twelve kids blamed MMR for what Wakefield called a "new syndrome," combining a novel bowel disease he claimed to discover and what he called "regressive autism," a severe disability, in which he said language and basic skills were lost.

Most disturbingly, the paper described what it called "behavioural symptoms" as appearing suddenly after MMR: an average of just 6.3 days following vaccination, with a maximum (in two cases) of 14 days.

As Wakefield explained in a patent application, discussed elsewhere in this summary:

"Before vaccination, the infants were shown to have a normal developmental pattern but often within days of receiving the vaccination some infants can begin to noticeably regress over time leading to a clinical diagnosis of autism."

Although the Lancet report involved only a dozen White kids, aged between three and nine, and its results would never be replicated, many medical breakthroughs begin with small-scale observations and, if true, such findings might have been the first snapshot of an unrecognised epidemic of devastating injuries to children.

Wakefield didn't hesitate to promote that suspicion. "It's a moral issue for me," he announced at the press conference, where he called for a boycott of MMR in favour of breaking the triple vaccine into single measles, mumps, and rubella shots to be spaced at yearly intervals. "I can't support the continued use of these three vaccines, given in combination, until this issue has been resolved."

Nothing in the paper evidenced this proposition. But as the doctor campaigned, UK vaccination rates slumped below the level needed to keep measles at bay. Even the British prime minister, Tony Blair, became embroiled in the affair when Wakefield supporters suggested - the Blairs say wrongly - that one of the politician's sons didn't receive MMR.

Meanwhile in America, a ferocious anti-vaccine movement took off after Wakefield toured autism conferences and in November 2000 appeared on the CBS network's 60 Minutes programme linking MMR with what he called an "epidemic of autism". This was followed by campaigners' allegations that all vaccines were suspect: either due to their ingredients or because of the growing number recommended to be given.

"In 1983 the shot schedule was ten. That's when autism was one in 10,000. Now there's 36, and autism is one in 150," argued American actress Jenny McCarthy, who blamed MMR for her own son's autism and gained the highest profile in the US for such beliefs. "All arrows point to one direction."

Andrew Wakefield unmasked

Journalists (including The Sunday Times's) scrambled to showcase Wakefield's warnings and to spotlight parents' fears. But in September 2003 reporter Brian Deer was assigned to investigate the controversy and unearthed a scandal of astounding proportions. Far from the scare being based on honest research, he uncovered a monstrous deception.

Unknown even to close Wakefield associates such as the paper's senior author John Walker-Smith, the doctor had been secretly payrolled to create evidence against the shot and, while planning business schemes to personally profit from the controversy, had changed, misreported, and manipulated the children's histories to rig his results in the Lancet.

Before Deer's intervention, Wakefield had appeared to all the world to be a respectable medical school researcher. Tall and square-headed, with hooded eyes and a booming voice, he was the son of doctors (a neurologist and a family practitioner), had grown up in Bath, a prosperous west-of-England spa town, and joined the Royal Free in November 1988 after postgraduate training in Toronto, Canada.

His demeanour was languid - he was privately educated - and, born in September 1956, he appeared as a lingering example of the presumed honour of the upper middle class.

But Deer's investigation - nominated in February 2011 for two British Press Awards - discovered that, while Wakefield held himself out to be a dispassionate scientist, two years before the Lancet paper was published - and before any of the children were even seen at the hospital - he'd been hired to attack MMR by a lawyer, Richard Barr: a mediocre jobbing solicitor in the small eastern English town of King's Lynn, Norfolk, who hoped to raise a speculative (and lucrative) class action lawsuit against the drug companies that made MMR.

Unlike expert witnesses, who give professional advice and opinions, Wakefield had secretly negotiated an unprecedented contract with Barr, then aged forty-eight, to conduct "clinical and scientific research". Their goal was to find evidence of Wakefield's claimed "syndrome", which they'd conceived as the centrepiece of (later failed) litigation on behalf of nearly 1,600 British families mostly recruited through stories planted in media.

This publicly undisclosed role for Wakefield created the grossest conflict of interest, and the exposure of it by Deer, in February 2004, led to public uproar in the United Kingdom that would resonate around the world for decades. As the Independent newspaper commented in an editorial on the day of Deer's first report:

"It may turn out that the greatest recent crisis in public health need never have happened."

Demonstrating not a shred of integrity or decency, however, Wakefield denied what he knew to be true. Within weeks of the first disclosure in The Sunday Times, almost all his Lancet co-authors retracted its "Interpretation", or conclusions, section. And, from July 2007 to May 2010, the UK doctors' regulator, the General Medical Council (GMC), held its longest-ever misconduct hearing, reinvestigating the journalist's early findings.

The Barr-Wakefield deal

Despite Wakefield's talk of his "moral issue," he'd been Richard Barr's hired gun for eight years. Under an undisclosed agreement between the pair, Wakefield was paid from the UK legal aid fund, run by the government to give less well-off citizens access to justice.

Wakefield charged through Barr £150 an hour (more than £254 an hour at October 2022 values) - billed via a company of Wakefield's then-wife. Payments to him (for generic work alone) eventually totalled what the UK Legal Services Commission, pressed by Deer under a new freedom of information act, said was £435,643 (£738,000, or nearly US $900,000, at 2022 values), plus expenses.

These hidden fees - revealed by Deer in The Sunday Times in December 2006 - gave the doctor a direct personal, but undeclared, financial interest in his research claims: totalling more than eight times his reported annual salary, and creating an incentive not only for him to launch the public alarm but to keep it going for as long as he could.

In addition to the personal payments, he was awarded an initial £55,000, which he'd applied for with Richard Barr in June 1996 (twenty months before the Lancet publication and six weeks before the first of the twelve children was admitted to the Royal Free), but which, like the hourly fees, he never declared to the Lancet as he should have done, to carry out the research submitted to the journal.

This start-up funding was part of a staggering £26.2m of British taxpayers' money (more than £44.3m, US $53.6m, at 2022 values) eventually shared among a small group of doctors and lawyers, working under Barr's and Wakefield's direction, trying to prove MMR caused his purported "syndrome".

Yet more surprising, Wakefield had asserted the existence of such a syndrome - allegedly including what he would later dub "autistic enterocolitis" - before he performed the research which supposedly discovered it.

This Barr-Wakefield deal was the foundation of the vaccine crisis - morphing into campaigns against shots for everything from human papillomavirus to SARS-CoV-2 - both in Britain and throughout the world.

As Barr instructed Wakefield in a confidential letter (obtained by Deer) six months before the Lancet published:

"I have mentioned to you before that the prime objective is to produce unassailable evidence in court so as to convince a court that these vaccines are dangerous."

And, if this wasn't enough to cast doubt on the research's objectivity, Deer unearthed another shocking conflict of interest. In June 1997 - nearly nine months before the press conference at which Wakefield called for single vaccines - he'd covertly filed for a patent on products, including his own supposedly "safer" single measles vaccine, which only stood any prospect of success if confidence in MMR was damaged.

Although Wakefield later dishonestly denied the existence of such patent claims, his proposed shot, and a network of companies intended to raise money from naïve investors (for purported Wakefield inventions including "a replacement for attenuated viral vaccines", commercial testing kits, and what he claimed to be a possible "complete cure" for autism) were set out in confidential documents.

One Wakefield business was awarded £800,000 (about £1.35m, US $1.6m, at 2022 values) from the UK legal aid fund on the strength of (later discredited) data which he'd co-authored with an Irish pathologist named John O'Leary. And, even as the Lancet paper was being prepared, behind the scenes Wakefield was negotiating plans to exploit the public alarm with secret schemes to line his pockets.

"Disgraced doctor Andrew Wakefield plotted to make £28 million a year [£49.6m, US $59.6m, at 2022 values] from the MMR jab panic he triggered," was how the British newspaper The Sun, for example, reported in January 2011 on this disclosure from Deer.

Behind the veil

As with the researcher, so too with his subjects. They also weren't as they appeared. The twelve children (eleven boys and one girl) reported in the Lancet were held out as if merely a routine series of developmentally challenged patients with bowel symptoms needing investigation by gastroenterologists.

That so many of the kids' parents were said to blame autism on the same common vaccine, understandably, caused widespread concern.

But Deer discovered that nearly all the children had been pre-selected through MMR campaign groups, and that, at the time of their admission to the hospital, most of their parents were clients or contacts of Richard Barr's law firm.

None of the twelve lived in London. Two were brothers. Two attended the same doctors' office, 280 miles from the Royal Free. Three were patients at another clinic. One was flown in from the United States.
Get Deer's book: The Doctor Who Fooled the World
Deer's investigation revealed, moreover, that the paper's pivotal purported finding - a sudden onset of autism within days of vaccination - was a sham: laundering into medical literature, as apparent facts, the unverified - and sometimes altered - assertions of a group of unnamed parents who (unknown to the journal and its readers) were bound to blame MMR when they came to the hospital because that was why they were invited.

Parents blaming the shot wasn't a "finding" at all. It was a secret qualification to take part.

For years, Wakefield - a former trainee gut surgeon, contractually forbidden to provide patient care - denied this. But confidential medical records revealed the true number of children whose parents claimed were injured by MMR wasn't eight, as the paper said: it was eleven of the twelve - later all twelve - and in most cases records noted legal involvement before the kids were referred to the hospital.

Regarding the only little girl in the project, for instance (who didn't have inflammatory bowel disease), her local family physician noted in records:

"Mum taking her to Dr Wakefield, Royal Free hospital, for CT scans, gut biopsies, ? Crohn's. Will need referral letter. Dr Wakefield to phone me. Funded through legal aid."

In the light of such discoveries, the grounds were overwhelming to dig deeper into Wakefield's activities. In an exercise never before accomplished by a journalist, Deer was able to gain parents' co-operation and to exploit the GMC hearing - which reinvestigated his first findings - to go behind the face of the 1998 paper, identify the twelve subjects, and access patient data.

Penetrating veils of medical and legal confidentiality, Deer discovered the hospital's clinicians and pathology service had found nothing to implicate MMR, but Wakefield (who alone wrote the Lancet paper) falsified diagnoses and clinical histories to make it appear he'd found his syndrome when he hadn't.

As first revealed by Deer in The Sunday Times in February 2009, the effect was to give the impression of a link between MMR, bowel disease, and the sudden onset of autism when otherwise none was evident.

Routine, but unreported, blood tests for bowel inflammation were normal. And what the hospital's clinicians and pathology service actually found in the kids' guts was constipation, with predominantly normal biopsies and benign or normal features.

When taken together with developmental histories, moreover, not one case was free of critical mismatches between the twelve-child paper and the kids' contemporaneous records. Some children were a cause for concern before vaccination. Some were deemed normal months afterward. Some weren't even diagnosed with autism.

Among the children Wakefield falsely reported as suffering from the "syndrome," for example, was the penultimate case in the series, a five-year-old boy from northern California, whose father was outraged by the deception. He wrote to Deer:

"If my son really is Patient 11, then the Lancet article is simply an outright fabrication."

Protections sidelined

In addition to discovering the study was rigged, Deer uncovered a raft of further issues, including a lie over ethical supervision.

Research on patients is governed by national and international standards - particularly the Helsinki Declaration [1996 revision] - and no reputable hospital review board would have endorsed the kind of fishing expedition into the guts of young children that Wakefield embarked on for Barr. Without that endorsement, moreover, no reputable medical journal would have published any resulting paper.

Against that background, to satisfy the Lancet 's patient-protection requirements, but without revealing to hospital authorities what was really going on, Wakefield dishonestly reported that a gruelling five-day battery of invasive and distressing procedures he caused to be performed on the kids - including anaesthesia, ileocolonoscopies, lumbar punctures, MRI brain scans, EEGs, radioactive drinks and x-rays - pre-agreed for the lawsuit, was approved by the Royal Free's ethics committee.

As the paper stated under the heading "Ethical approval and consent":

Investigations were approved by the Ethical Practices Committee of the Royal Free Hospital NHS Trust, and parents gave informed consent.

But Deer proved that, despite the research being executed on the uniquely vulnerable, developmentally challenged children of sometimes distraught parents hoping for money to help with their care, the ethics committee wasn't told the truth about the project and never gave any such approval.

Responding to Deer in February 2004, Wakefield and his key accomplices - Royal Free paediatricians and Lancet co-authors John Walker-Smith and Simon Murch - denied this explosive discovery and issued a formal statement for media. But, after being confronted with the evidence at the GMC hearing, they changed their story and - despite clear rules - now argued they needed no approval.

And yet in the Lancet they'd expressly claimed to have it: requiring a London High Court judge to intervene. As Justice Mitting later ruled of the ethics statement (written by Wakefield):

"This statement was untrue and should not have been included in the paper."

Andrew Wakefield's science

Deer also probed Wakefield's basic science. The story was much the same. The doctor obtained the legal money and planned his business ventures against a hypothesis of his own that the culprit for both the (fake) inflammatory bowel disease and (unsubstantiated) regressive autism was persistent infection with measles virus, found live as a normal part of MMR.

But Deer demonstrated on UK TV that sophisticated, unreported, molecular tests carried out in Wakefield's own lab had found no trace of measles in the children's guts, blood, or cerebrospinal fluid. Those tests, moreover, were among a string of findings from labs around the world which also found no evidence of the virus.

In a further report by Deer, The Sunday Times also disclosed critical flaws in one apparently positive study, led in Dublin by pathologist John O'Leary, using samples supplied by Wakefield. This misled thousands of families in the UK and US, ensnared for years in hopeless litigation almost entirely based on Wakefield's claims.

Deer (who in April 2006 reported the first British measles death in 14 years) took no view on whether vaccines may or may not cause autism. But he never found any scientific material repeating the Lancet project or its findings. Although, self-evidently, all kinds of children, including those with autism, suffer from digestive issues, he learnt of a mass of authoritative research comprehensively contradicting Wakefield.

"Specifically, numerous studies have refuted Andrew Wakefield's theory that MMR vaccine is linked to bowel disorders and autism," was how the American Academy of Pediatrics summarised the consensus in an August 2009 statement to NBC News for a Dateline programme on the clash between Wakefield and Deer. "Every aspect of Dr Wakefield's theory has been disproven."

The English courts also spoke on this aspect, for example in the ruling of Justice Mitting, handed down in March 2012:

"There is now no respectable body of opinion which supports his hypothesis, that MMR vaccine and autism/enterocolitis are causally linked."

And England's Court of Appeal declared in May 2020:

"Dr Wakefield's paper has since been wholly discredited."

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The impact of Deer's investigation has been felt around the world, with media coverage from New Zealand to Canada. In the UK, the Sunday Times revelations prompted huge follow-up by other news outlets, and, after years during which MMR vaccination rates fell in response to the campaign led by Wakefield and Barr, a reversal in the trend over the years of Deer's reporting until public confidence fully returned.

Meanwhile, in the US - where the Barr-Wakefield deal was joined by unsubstantiated complaints marshalled by American attorneys that a mercury-based vaccine preservative, thimerosal, was also at fault in autism - findings by Deer were presented by the Department of Justice in federal court, followed in February 2009 by scathing rulings.

After hearing a test case of petitions from some 5,000 US families, one presiding special master (or judge) said:

"It is a noteworthy point that not only has that 'autistic enterocolitis' theory notbeen accepted into gastroenterology textbooks, but that theory, and Dr Wakefield's role in its development, have been strongly criticized as constituting defective or fraudulent science."

Wakefield denies everything

In response to Deer, Wakefield supporters falsely denied that he took money for research or claimed his own vaccine, and (amid a barrage of sometimes paid-for smears, stalking by a Wakefield lawyer named Clifford Miller, and crank abuse of the journalist) lauded the doctor as a "hero".

The father-of-four Wakefield's deceits, however, hadn't only triggered the resurgence of sometimes fatal or brain-disabling diseases, plunged countless parents into the hell of believing it was their own fault for agreeing to vaccination that a son or daughter developed autism, and misled an ethics committee over child rights and safety, but it was discovered he'd gone as far as to betray a vaccine safety whistleblower whose identity he discovered and had bought blood from children as young as four years old, attending a birthday party, then joked about them crying, fainting and vomiting.
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Meanwhile, Wakefield falsely denied any conflicts of interest, ran a ruthless smear campaign against Deer, and even claimed he never said MMR caused autism. But documents - including his patents - evidenced his assertions, and he published a string of further falsified reports while working with Barr to undermine confidence in the shot.

Even when he knew his key allegations were proven baseless, he was found promoting them from a controversial business in Austin, Texas, called Thoughtful House, where - after being fired from the Royal Free in October 2001, following his refusal to validate the Lancet study with a larger number of children - he held a lucrative post spun from his campaign.

Throughout Deer's investigation, Wakefield refused to co-operate, filed baseless complaints, and issued statements denying every aspect. He also initiated, sought to stall, then abandoned with some £1.3m ($2m) costs (about £2.14m, US $2.6m, at 2022 values), a two-year "gagging" libel lawsuit in London, financed by the Medical Protection Society which defends doctors against their patients.

In reply, Deer pressed the court for a speedy trial to clear his name, publicly accusing Wakefield of being "unremittingly evasive and dishonest".

The doctor's conduct in this litigation was also damned by the judge hearing the case, who said Wakefield appeared to have filed suit for "public relations purposes," "wished to extract whatever advantage he could from the existence of the proceedings while not wishing to progress them", and was using them as "a weapon in his attempts to close down discussion and debate over an important public issue".

Wakefield paper retracted

Faced with overwhelming proof of his grotesque misconduct, Wakefield concocted a preposterous conspiracy theory to account for his exposure and denied rigging his results. As he argued in a March 2009 statement:

"The notion that any researcher can cook such data in any fashion that can be slipped past the medical community for his personal benefit is patent nonsense. Scientific rigor requires repeatability for verification of any research and Mr Deer's implications of fraud against me are claims that a trained physician and researcher of good standing had suddenly decided he was going to fake data for his own enrichment."

Yet, that's precisely what Wakefield did. And on 28 January 2010 - after 217 days of evidence and submissions - a panel of three doctors and two lay members hearing the GMC case handed down verdicts wholly vindicating Deer.

Branding Wakefield "dishonest", "unethical" and "callous", the panel found him guilty (against the criminal standard of certainty) of some three dozen charges, including four counts of dishonesty (including one Wakefield himself submitted through counsel to be a charge of "fraud") and twelve involving the abuse of developmentally challenged children.

The panel found his research to be dishonest and performed without ethical approval. And, five days after these rulings, the Lancet fully retracted the 1998 paper from the scientific literature as "utterly false", prompting international media interest and further retractions.

"What is indisputable is that vaccines protect children from dangerous diseases," said The New York Times, in one of a string of editorials in leading newspapers. "We hope that The Lancet's belated retraction will finally lay this damaging myth about autism and vaccines to rest."

Three weeks later, on 17 February 2010, Wakefield was ousted by the directors of his Thoughtful House business in Texas, and on 24 May - day 217 of the GMC hearing - he was ordered to be erased from the register of UK doctors, ending his career in medicine.

On 21 December 2010, that erasure was confirmed after his legal team withdrew their support for his case and he abandoned an appeal against the verdicts.

Journal calls the fraud

But the Andrew Wakefield story continued to astonish, even after his career was over. In January 2011, the British Medical Journal (BMJ), helped develop the investigation for a medically qualified readership with a three-week package of disclosures and editorials centred on three major reports by Deer.

The BMJ package (including peer review, editorial checking, and sixty hours of legal review) also included an introduction by the journalist, titled Piltdown medicine, comparing the features of Wakefield's fraud with those of Britain's most notorious scientific forgery.

The journal's editors called Wakefield's twelve-child study "fraudulent" and accused the Royal Free medical school and the Lancet of "institutional and editorial misconduct".

Regarding Deer, the BMJ's editors noted a paradox. A mere reporter had beaten experts to the truth:

"It has taken the diligent scepticism of one man, standing outside medicine and science, to show that the paper was in fact an elaborate fraud."

Among hundreds of reports worldwide on Deer's revelations in the BMJ - which were covered by all north American networks and reached almost half of Americans surveyed days later in a Harris poll - The New York Times said in a second editorial on the affair:

"Now the British Medical Journal has taken the extraordinary step of publishing a lengthy report by Brian Deer, the British investigative journalist who first brought the paper's flaws to light - and has put its own reputation on the line by endorsing his findings."

Three months later, Deer's personal journey reached a turning point when in April 2011 he was named specialist journalist of the year in the British newspaper industry's annual Pulitzer-style Press Awards. Judges for the Society of Editors praised what they called his "outstanding perseverance, stamina and revelation on a story of major importance". They said of his investigation:

"It was a tremendous righting of a wrong".

Parents speak out

And yet still Wakefield refused to show any regret and, in a bid to raise money by tricking supporters, the following year he filed another vexatious lawsuit: this time in Austin, Texas. Like his London action, however, it stood no prospect of success and was thrown out by senior judges.

In fact, it appeared the Texas case was kept alive mainly to create content for a faux "documentary" by one Miranda Bailey who, in a contrived collaboration, faked the appearance of "fly on the wall" coverage at Wakefield's Austin home and lied that Deer refused to reply.

That might have concluded many years of inquiry: a rarely paralleled newspaper investigation. As Deer summarised a position of the utmost confidence:

This story is so detailed and my reporting so persistent... that either it's honest and correct - in substance and sting - or Wakefield must have fallen victim to the most sustained barrage of malicious defamation in the history of the English language.

But the ex-doctor's dishonesty provoked further developments as parents, former colleagues, and others came forward to tell the journalist what they knew.

One mother, who for years betrayed Wakefield's network from the inside, declared of her reasoning for collaborating with Deer:

"I had a situation where there were two men. One was a doctor and the other was a journalist. One of them was saying 'white' and the other 'black'. One of them was an honourable man. And one of them was a shyster."

Finally, in September 2020 (delayed by the pandemic) came Deer's exhaustively and independently checked book on the scandal, The Doctor Who Fooled the World. This was published in North America by Johns Hopkins University, elsewhere in English by the quality publishers Scribe, and with rights so far sold for Polish, French, Russian, Korean, and Chinese languages.

Among reviews, the top science journal Nature described the book as "riveting," The Times called it "remarkable," and The Wall Street Journal explained:

"Exposing researchers who lie, cheat and fake their data often requires the work of courageous whistleblowers or tenacious investigative journalists. Enter Brian Deer."

Among many new revelations regarding what the book calls "a conspiracy of fraud and betrayal," it identifies not only the sham science behind the attack on MMR, with critical information withheld from the public for decades, but also the horrifying suffering of children in Wakefield's research, some held down kicking and screaming as they resisted the battery of unethical experiments forced upon them at the Royal Free in London.

And then the upshot: exquisite final evidence in the words of another of the Lancet twelve's parents. Coming forward to supply Deer with a trove of contemporaneous documents from the 1990s - proving Wakefield's misconduct all over again - she wrote:

"I know that paper is not right and fraudulent. I can see that from what was written about my son."
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Andrew Wakefield: the fraud investigation

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"The press discharges vital functions as a bloodhound as well as a watchdog." - The Court in Reynolds v Times Newspapers, October 1999 [Long-read summary: 4,000 words] With revelations scattered across seventeen years, between 2003 and 2020 Brian Deer pursued a landmark public interest investigation for The Sunday Times of London, with spin-offs for a UK TV network and the British Medical Journal, into allegations linking the measles, mumps and rubella vaccine (MMR) with brain and bowel damage in children.

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A great video to share with kaiako about why some tamariki do 'those annoying things'

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Brain Highways: The Proprioceptive System

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A great video to share with Kaiako about why children might move a lot - and why they need to move a lot!

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A great video to show kaiako to explein interoception for our takiwtanga tamariki and how their reactions to things may seem 'over the top'

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this ataahua whānau māori have a takiwatanga tamaiti. They have battled the system and have chosen to veiw takiwātanga through a te ao māori lens. They travel and support whānau and communities running workshops. They also have a IG and FB with supporting videos and info.