“Self-styled £210-an-hour autism guru says organic chicken nuggets can help cure it”


The article published by the Mirror on 31.10.20 follows an undercover recording of a consultation with the campaign activist Emma Dalmayne, from A.I.M – Autistic Inclusive Meet. Please take the time to review Emma Dalmayne long list of false claims on Wikipedia:Articles for deletion/Emma Dalmayne.

The recording was coordinated by Amy Sharpe with whom Emma Dalmayne previously collaborated on other pieces using a similarly unbalanced / poor quality reporting, subterfuge and secretive recording devices.  

I believe the stunt consultation was part of an orchestrated campaign aiming at defaming me personally and is evidence of breach of the Editor’s Code of Practice because of its inaccuracy and the misleading reporting of the article. 

I have lodged a complaint to IPSO (Independent Press Standards Organisation) regarding the article, which is included here below. I have also engaged a solicitor.

As of 05.11.20, the initial article published by the Mirror has been copied to various media outlets. I have reported these to IPSO and to my legal representative. These are:

Daily Record
Popstar.one
Dailystar.co.uk
Starsalert.com 
news.knowledia.com
onlinenewseurope.eu
Uk.glbnews.co.uk
reddit.com (900+ comments on chicken nuggets)
Edinburghlives.co.uk

 

Update 19.11.20

From Independent Press Standards Organisation.

“We have conducted an assessment of your complaints and have decided that these fall within our remit and may raise a breach of the Editors’ Code of Practice…IPSO will consider the matter in relation to any online and print versions of the article published by mirror.co.uk, dailyrecord.co.uk, edinburghlive.co.uk and dailystar.co.uk (Reach PLC).”

Below is my complaint to the Mirror article. The article was re-published, either in whole or in substantially similar form by sister titles within Reach PLC media group and all of those articles are also defamatory.

A- Accuracy

1- “Title:  Self-styled £210-an-hour autism guru says organic chicken nuggets can help cure it.”

I refute these allegations.

I refute the defamatory description as being a “self-styled autism guru”. I hold a PhD from Oxford University and have carried out extensive research in areas of neuroscience (brain development, brain ischemia and epilepsy) at Edinburgh, Oxford and Princeton Universities. I have been involved in several research and clinical projects and have also completed a Masters in Special Education – Autism at the University of Birmingham where my work has been published. I am also trained in administering the Autism Diagnostic Observation Schedule (ADOS) and Autism Diagnostic Interview- Revised (ADI-R) used for the diagnosis of autism. I have worked for two Scottish local authorities, developing and implementing the Autism Strategy. The strategy makes a commitment to improving the life outcomes for children and adults with autism and their families and carers. In this role, I led and directed the project team on the autism strategy, achieving a Gold COSLA (Convention of Scottish Local Authorities) Excellence Award in October 2016 for the work.  I work in collaboration with scientists, educators, physiotherapists and medical doctors to assist the life of people affected by autism.

My work in autism followed on from life experiences. I am a parent of a young adult with autism. My son became very unwell suddenly at the age of 6 and he was unable to function in a school system. He lost his speech, adopted novel behaviours, was very distressed, his digestive health deteriorated, he developed epilepsy and chronic fatigue. The NHS did not question the reason for my son to suddenly become so unwell at age 6. He received some treatment from the NHS for his epilepsy but not the other many symptoms he suffered from. As a parent, I had no choice in order to help my son to seek additional medical and educational expertise from the private sector. That help was simply non-existent elsewhere.

I refute using the word “cure”. The word “cure” is not a word I ever use in the context of autism; I have never said there is a cure for autism.

I refute saying that organic chicken nuggets can cure autism or have any effect on the symptoms of autism. I actually specifically explained in my consultation why a diet consisting of chicken nuggets was detrimental to health, making it clear this is the case for anyone and it has nothing to do with autism. 

The support provided includes a detailed report of recommendations with additional material for further information. In Emma’s case the report was 10 pages long. There were 9 additional documents on the diet, communication support and behaviour management.  She also received a social story to help her child understand that a border diet is better for her health and a log to chart her daughter’s challenging behaviour in order to assist in understanding the function of her behaviour (ABC, Antecedents, Behaviour, Consequences log) .

My services are comprehensive, detailed, tailored to the child and family needs and represent the knowledge accumulated over more than 20 years of my career in autism.

Regarding the £210 fees, this covers a first consultation and is not per hour. In Emma’s case, the consultation over ran by 10 min and at no point did I say we needed to stop at 1hr. The £210 fees includes a preparatory work of at least 30 min to review the completed forms, any prior results shared as well as other professional reports and review the videos of the child’s behaviour. In the videos we focus on communication, how the child spends their time when left alone, and the response to others and any behaviours of concern. Time taken to prepare the reports following the consultation is 1-2hr, all of this is included in the consultation fee. The advice given typically cover a period of 3 months. Follow up consultation cost ranges from £60 for 20 min to £135 for 45 min, again including preparatory work, review of videos and reporting. Parents are also offered a free follow up call if any clarifications are required following my reports, that is the case for all consultations.

2- “A self-proclaimed autism ­expert told a mum that studies suggest the MMR jab is linked to the condition.”

This is is a distortion. At no point have I ever summarised that autism is caused by MMR. In fact with colleagues we have recently published a peer reviewed paper that outlines the literature in terms of autism physical health comorbidity issues. This review explains that there are many potential underlying causes to autism.

Autism is a complex and highly heterogeneous neurodevelopmental condition. Autism diagnosis is based on the presence of persistent challenges in social communication, and restricted/repetitive behaviours, many common medical conditions are also now recognised to be significantly more prevalent in people with autism compared with the general population. The paper can be viewed here

Sala R, Amet L, Blagojevic-Stokic N, Shattock P, Whiteley P. Bridging the Gap Between Physical Health and Autism Spectrum Disorder. Neuropsychiatr Dis Treat. 2020;16:1605-1618
Neuropsychiatric Disease and Treatment, Dove Medical Press.
Regina Sala​1​, Lorene Amet​2​, Natasa Blagojevic-Stokic​3​, Paul Shattock​4​, Paul Whiteley​5

1​Centre for Psychiatry, Wolfson Institute, Barts & The London School of Medicine & Dentistry Queen Mary University of London, UK
2​Autism Treatment Plus, 21 Manor Place, Edinburgh EH3 7DX
3​Thinking Autism, London, UK
4​ESPA (Education & Services for People with Autism), Sunderland, UK
5​ESPA Research, Sunderland, UK  

I do not proclaim to be an expert of autism. In fact, I would say quite the opposite, that there are no experts of autism as the condition is currently not fully understood.

3- “Experts were left horrified by her remarks.”

What does this actually mean? What information was shared, and who are these experts? Can a journalist get away not only with lies, defamation, misrepresentation but also meaningless and vague accusative statements? 

4- “The same £210-an-hour guru then claimed child ­autism could be alleviated by an exclusion diet which includes organic chicken nuggets.”

Absolutely ridiculous. I am stunned by this distorted representation of what I have said. Emma Dalymaye, posing as Petra described her child Raye as only eating chicken nuggets and having a very restricted diet. A self-restricted diet is something often seen in autism. In fact what I discussed with Emma is how to help her child accept a progressively broader diet, starting from the diet her child would only accept. I explained, as an example, she could make the familiar foods with healthy ingredients. For example, reducing gluten, a known pro- inflammatory food, and this may help reduce the inflammatory load. 

In Petra’s specific circumstances, I explained in a  step by step process how parents can be successful in progressively broadening their child’s diet. The health benefits of a nutritional diet are many, this is true for everyone. A healthy diet is the start of a better foundation to health. As an aid, I have made available a range of recipes developed by nutritionists. I also referred to published evidence of how such a Gluten-Free and Casein Free (GF/CF) diet can help alleviate the symptoms of autism (see point 6 below). 

5- “The National Institute for Health and Care Excellence has discredited this as a way of managing autism in young people”

The NICE guidelines in their current version were published in 2013. NICE did not discredit dietary modification as a way of managing autism, what they did was to  not recommend the “diet for the management of core features of autism in children and young people”. This is very different. The NICE opinion is based on the evidence available at a time and will, according to their practice,  be reviewed in the light of new evidence. On the basis of the evidence available at the time of writing, it was concluded that there was insufficient evidence for the safety and efficacy of exclusion diets and that further randomised and blinded placebo-controlled trials would be required before the use of such interventions could be recommended to treat core autism features in children and adults.”

The NICE guidelines also stated that “”other areas where parents and carers felt that intervention was needed included diet  and supporting healthy living”. It further states:

“”The most commonly tried interventions, which were also the ones that were considered to be the most beneficial, were: a casein-free diet (tried by N = 6; beneficial by N = 4); gluten-free diets (tried by N = 9; beneficial by N = 6)”

The guidelines also recommend addressing “factors that may trigger or maintain behaviour that challenges: such as treatment for physical disorders, or coexisting mental health and behavioural problems” which is what we advocate.

It therefore would appear that Amy Sharpe has not read and understood the NICE guidelines.

6- “Our probe was triggered when a parent raised ­concerns about the work of Amet’s clinic – Autism Treatment Plus – which claims to have improved the development of 80 per cent of its patients.”

I am unaware of a parent raising concerns and do not think it conceivable that in the event of such a concern being raised a parent had contacted Amy Sharpe to report it. Our complaint procedure which is part of our terms and conditions specifies the means to raise a concern and seek resolution in a first instance by seeking a second opinion. I have not received any complaint, instead many parents report of the great benefits seen in the children.

I did not make any claim that 80% of families who come to me seeking advice improve on the diet. I referred to the published outcomes (referenced below) that such a diet, gluten free, casein free and sugar free diet, leads to improvements in about 80% of the cases. I have also clarified that such potential health benefits are true of many conditions, and are not specific to autism. Such a diet is the starting point to better health.

The evidence is provided in my report shared with Emma two days after our video call and is included here.

From the published report referenced below:

“A gluten-casein free diet was accompanied by improvement in 81% of autistic children within 3 months. Our data provide support for the proposal that schizophrenia and autism are due to absorption of exorphins formed in the intestine from digestion of gluten and casein.” 

Ghalichi, Faezeh, et al. “Effect of gluten free diet on gastrointestinal and behavioral indices for children with autism spectrum disorders: a randomized clinical trial.” World Journal of Pediatrics 12.4 (2016): 436-442. 

“Of the 80 children, 53.9% had gastrointestinal abnormalities. In the GFD (Gluten Free Diet) group, the prevalence of gastrointestinal symptoms decreased significantly (P<0.05) after intake of GFD (40.57% vs. 17.10%) but increased insignificantly in the RD group (42.45% vs. 44.05%). GFD intervention resulted in a significant decrease in behavioral disorders (80.03±14.07 vs. 75.82±15.37, P<0.05) but an insignificant increase in the RD group (79.92±15.49 vs. 80.92±16.24)” 

7- “In a video consultation, Amet pushed the ­supposed link between autism and the Measles, Mumps and Rubella vaccination – fears which medical studies have debunked.”

I must counter this erroneous accusation. The issue of MMR was raised by Emma who described in detail the development of her children following MMR vaccination. Emma was initially unwilling to discuss the fact that two of her children had autism. I said this was important because, in instances where two children are affected by the condition, there is the possibility of an underlying genetic causality to their autism. Emma did not disclose her diagnosis of autism though she was asked about her own health history.

Regarding her reports of adverse response to vaccination, my response to her was quite clear that many parents have made such an observation.  

My notes from my video conference demonstrate that Emma contrived the exchange to lead me on to discuss vaccination.

Family health history: One sibling, older, 13, boy. Has autism, dyspraxia, ADHD, LD. Language disorder. Very early onset of issues, possible regression after vaccination, more aggressive once vaccinated at 24mon, MMR. Vaccination was delayed because the family was on holiday. 18 mon, lining and flapping. Age 1: never had good eye contact.

Raye never slept well, would sleep 11 pm, has never been able to sleep sooner. Wake up 2 am, screaming every night, aware 2-3hr, teeth grinding and flapping. Worse after the vaccine, MMR, given at 18 month.After this she developed a fever, was very sick, behaviour changed and withdrew completely. 

8- Amet, an Oxford graduate who runs clinics in London and Edinburgh, claimed doctors “do not do their job” as autism is not reported as an ­“adverse reaction” to the MMR jab.

This is untrue. What I stated is that the health concerns reported by some parents following vaccination are not reported by GPs to the MHRA through the Yellow Card Scheme because a link between autism and vaccine has been outright dismissed.

9-She acknowledged that the ­“official position” states there is no link ­between the two, but claimed studies suggest otherwise and that opinions have been “suppressed”

I have not stated that studies suggest otherwise and have been suppressed, this is another misrepresentation of my reporting. I do not work on vaccines; my work and the focus of our call was to identify any potential remedial intervention to address the sleep, dietary, behavioural and communication needs flagged by Emma. I am concerned by the potential impact any environmental factors may have on the development of the child, from pre conception to pregnancy, perinatal and postnatal stages. Some children with autism have never been vaccinated. Autism is a collection of syndromes and understanding as best as possible what are the potential root causes of the disorder may provide clues on how to alleviate the symptoms. When a genetic causality is suspected, I would advise to seek a referral to genetics for genome analysis. We have a few children whose autism has been linked to specific chromosomal abnormalities.

10- “She then went on to make unproven claims about how the condition can be alleviated by changing a child’s diet”

I refer to point 6 regarding the evidence and content of our communication. 

11- “Before the meeting with Amet, Emma was sent a questionnaire – which had the tagline “Autism is treatable” – asking for extensive details about her child, such as her height, weight, details of her birth and diet”

This is wrong, the tagline associated with the questionnaire is in fact: Improving the health and development of people with autism.

There are three questionnaires. Emma partially completed two of those.They do go much further than stated in the article and include the child’s behavioural issues, communication needs, dietary preferences, sensory issues in order to provide a comprehensive picture of the current challenges faced by the family.

In addition the questionnaire requests information about the child’s GP contact details in order for us to liaise with the child’s GP in agreement with the parents. 

12- “Amet, who claims to have worked with over 1,000 families, said Raye’s diet – which includes chicken nuggets, fruit juice and noodles – could be behind her “challenging behavioural issues”.

This is not what I discussed. Here are my notes from the report based on the fictional child’s behavioural issues reported by Emma. 

“Self-injurious behaviours (SIB) are often an indication of pain, especially if the behaviour occurs when the child is left alone or out of the blue (without trigger). Inflammation is commonly caused by a gut issue and can involve the central nervous system. Such behaviours are a problem because Raye may use them to avoid demands and to control others and her environment. Such behaviours are socially stigmatising for her and your family whilst in the community and can interfere with learning functional skills and developing her relationships with others. Instructional Control In order to help minimise any challenging behavior it is essential that the procedures of ‘instructional control’ are applied when interacting with Raye. It is highly recommended that both family members and any other person directly involved in supporting her, familiarise themselves with these procedures (see details below). It is also essential to never give her a reinforcer (which is a preferred item) when she is engaging in inappropriate behaviour. If Raye is given these items whilst she is exhibiting inappropriate behavior then it is likely that this will lead to an increase in this form of challenging behavior in the future (because she has learned that if she engages in inappropriate behavior then she is likely to gain access to highly preferred things). 

Please read the information I have included in the additional protocol on managing behaviour and how to control your environment so you achieve what is called instructional control in the attached protocol.

If required do some ABC log to understand the function of these behaviours.

I also provided some guidance on how to support Emma’s daughter’s communication needs. 

13- “Until you change your diet, that pain will not stop.” Amet said there was “no magic pill” for ­autism. But, asked if ­anything would “take it away”, she said: “Number one is the diet.”

This is incorrect, I did not say diet alone will “take it away”. I explained instead that as the starting point, the child’s diet needed to be improved. The information I shared covered a much wider range of support, including behavioural and communication support. 

14- “She later sent Emma vegan recipes and a report saying her suggestions could have a “profound effect on well-being and behaviour” with ­“improved bowel ­habit, appetite and weight regulation, improved ­sleep patterns, eye contact, speech and sensory issues” among the potential benefits.”

I am at loss as to how the recipes I shared can be read as being “vegan”. We do not advocate removing meat and other animal products because animal proteins are an important part of a balanced diet.

15-  “She also recommended anti-inflammatories to “control the pain” along with urine, stool, hair, food ­intolerance and blood tests for £971 – available from Autism Treatment Plus.”

This is incorrect. Emma wanted to know about what testing is available. The information provided to Emma makes clear that I can commission testing from laboratories at patents requests. I do not carry out testing and that any testing done is carried out at approved laboratories. It further explains that the child’s GP will be involved in the investigations.  I did not discuss testing with her but agreed to include some information on testing in my report at her request. 

I further explained that there were no benefits to testing if even basic changes cannot be put in place first. Testing that aims to understand potential health imbalances can only be beneficial if changes can be adopted.

I did not recommend any anti-inflammatories. I referred to a broader, more balanced diet that is at its core anti-inflammatory in nature. 

16- “In a follow-up report outlining a three-month plan for Raye, Amet said further “treatment” would involve working with medics in Geneva, who can issue prescriptions based on results without having to see the patient.”

In instances where families have immediate and pressing concerns, I help mediate access to private medicine. In all instances the practitioners involved are licensed and regulated and are allowed to work on a private basis on their own professional responsibility. I did not recommend proceeding with such a medical consultation to Emma. 

17- Dr James Cusack, head of research charity Autistica, said: “It’s disgraceful that these private practitioners misinform parents in this way.

“They are selling ineffective tests and treatments which have zero scientific credibility and which could be distressing.”

At no point did Dr Cusack contact me to discuss the approach taken, testing and interventions. I do not know what information Dr Cusack’s response is based on and indeed what was said to him. If Dr Cusack was asked if organic chicken nuggets do cure autism I am not surprised by his response.

I believe that Dr Cusacks is unaware of what tests can be recommended.  Any testing carried out is performed at approved laboratories in the US, Belgium, Luxembourg and the UK. They are not “ineffective”.  The tests are accurate and measure a whole range of biomedical markers covering in details the health of a person. The areas covered include: gut health -microbiome, digestive function, possible inflammation; urine organic acid test with -energy metabolism, amino acids, fatty acid metabolism, mitochondrial markers, bacterial and yeast metabolites and some blood markers of inflammation, infections, allergy and intolerances (including gluten and casein), together with a comprehensive health check up covering the nutrition, such as vitamin D and Omegas 3s, liver function and thyroid function.

18- “He (Dr Cusack) advised parents to rely on trusted sources such as the NHS, the National Autistic Society or the Autistica website.”

Parents do seek advice from their GP but unfortunately do not receive the support they seek. At present and in most instances, the NHS only assists by providing a referral to autism diagnostic services, speech and language and occupational services. In most instances, any issues of abnormal behaviour are misunderstood as being part of what autism is, or are labelled as a mental health/ psychiatric in nature, rather than being seen as an indicator of potential physical health issues.  No investigations of the root causes of the behavioural issues are provided. However, I am encouraged to see an increasingly large number of GPs who have been supportive and have assisted by providing access to tests on the NHS following our request.

The problem faced by families is that the number of children diagnosed with the condition is rising yearly, way beyond the 1% figure stated in the article. Until there is a true recognition of the issues and better awareness from health care professionals of the comorbidity physical health issues contributing to poor health and worsened behaviour, there will be a need for parents to consult privately. 

B- Privacy

I did not consent to being photographed (Zoom scan used in the article) in my home.

C- Clandestine devices and subterfuge

Amy Sharpe used a clandestine listening device to record our meeting.

Amy Sharpe and Emma Dalmayne used misrepresentation and subterfuge: Emma is presented as a mother of two children with autism. Her conflict of interests are undisclosed in the piece. She is in fact a Director and activist working for A.I.M – Autistic Inclusive Meet. AIM is a Private Limited  Company (number 10883624) registered with Company House. Emma and Amy have worked on other pieces using similar subterfuge and clandestine devices.

I do not accept that the use of clandestine devices is justified for public interest as the allegations made are false and the article produced is a sham.