Autism: challenges and solutions
Louise Alexander talks to Dr Lorene Amet D.Phil. M.Ed. who is widely respected and known nationally and internationally for her knowledge of autism in the academic, public and third sectors. Dr Amet’s company, Autism Treatment Plus, specialises in diagnosis, interventions, training, research and evaluation. She also shares why autism is close to her heart and what led her to this field of interest.
Dr Amet argues that medication is not the way to go when tackling autism and that to understand the root causes of a person’s difficulties is key to reducing the challenges associated with the condition. She explains how parental dedication, access to early diagnosis and intervention, specifically putting in place a dietary and nutritional approach, can help. She further focuses on a supplement called NADplus by Eudeamon that can be particularly beneficial to reduce hyperactivity and improve the cognitive skills of autistic children and adults.
Q Dr Amet, could you tell me about Autism Treatment Plus and your career in autism?
A In 2005 I was appointed Principal scientist of an organisation set up by parents and relatives with autism who were largely disappointed by the lack of ‘voice’ autism had. Together, our aim was to create awareness of autism to healthcare professionals, highlighting the needs for supporting the health of children with autism. In 2006, a clinic was established in Edinburgh which provided diagnostic services and access to biomedical, nutritional and behavioural interventions in order to tackle the various medical and behavioural issues affecting children with autism.
We have come a long way, and today I am proud to say, with the help of a dedicated team of scientists, medical doctors, behaviourists and many volunteers, we at Autism Treatment Plus provide access to diagnostic services, dietary and nutritional interventions and behavioural advice to support over 1,000 families in the UK and from overseas.
Q Where are you based?
A I have clinics in Edinburgh and London and provide remote support via video calls for families from across the UK and abroad.
Q What is your medical background?
A I have a PhD in biological sciences from Oxford University, eight years of post-doctoral research work at Princeton University in the US and Edinburgh University and Master in Special Education Autism from Birmingham University. I have also received the Autism Trainer Award accredited by Scottish Autism.
Q What exactly is autism?
A Autism is a lifelong, developmental disability that affects how a person communicates and relates to other people, and how they experience the world around them. In addition, many individuals with autism suffer from a number of health issues that have a direct impact on their development and behaviour. Our role is to properly diagnose these health issues. In other words, our focus is to understand what is behind the label of autism.
Q How would someone with autism view the world?
A There are many testimonies and reports from people with high functioning autism that help us understand how individuals at the high end of the spectrum see the world. They often report that the world appears confusing and overwhelming. In addition to not fully understanding social contexts and relationships, individuals often feel overwhelmed by their senses, the noise level, lighting, perfumes and flavours. This can lead to behavioural meltdowns or withdrawing. Connecting events, adapting to changes and living independently can be very difficult. It is harder to fully know how someone at the lower end of the spectrum understands the world, because for many communicating is very hard. Connecting events and understanding self can also be difficult.
Q How is autism diagnosed?
A The diagnosis of autism is based on three main developmental difficulties, affecting the person’s social, communication skills as well as their behaviour. Issues of behaviour include repetitive behaviours and narrow range of interests, as well as sensory problems such as hypersensitivities to tastes, textures of food, sounds and lighting or hyposensitivities to pain and movement. There are no biological markers for autism. Autism is a huge spectrum, but all individuals share some degrees of social communication and behavioural difficulties.
Q Please could you explain the spectrum and do conditions like Asperger Syndrome, ADHD, dyspraxia and the like fit into this spectrum?
A At one end of the spectrum, the so-called low functioning end, many individuals are non-verbal or have very limited verbal communication skills. At the other end of the spectrum, individuals are verbal and have normal or better than average use of vocabulary and grammar, yet they remain affected in the fullest understanding of communication, especially in relation to the social context. Today’s diagnostic criteria set by the American Psychiatric Association, the DMS-5, no longer separates Asperger Syndrome from the rest of the spectrum. People with autism often have some degree of dyspraxia – motor planning difficulties – and it is also common for them to have some attention and hyperactivity difficulties such as seen in ADHD.
The DSM-5 diagnostic criteria have changed and become stricter. Some children who were once diagnosed with autism under the DSM-IV no longer have a diagnosis of ASD under the current diagnostic criteria.
Q Can you describe a typical patient?
A I see parents who self-refer to my services. Their child either has already received a diagnosis of autism or they are waiting for the assessments provided by the NHS to be completed. In either case, they want to know why their child’s development is affected and what we can do to improve their child’s life outcomes. They are not content with the expressed judgements that nothing other than special education, respite, speech and language therapy or occupational therapy can help. They want more and they want this as soon as possible in the child’s life. We advocate early intervention: I see children as young as age two.
Q Do you believe parental intuition is key to identifying autism?
A Yes, a parent’s intuition is key. Often parents do report their concerns to the child’s health visitor or GP, but very often these are dismissed as: “every child develops at a different speed” or “boys are always slower to develop”. Parents are smarter than this, they know something is not right.
Q Do you believe parents playing a key role after their child’s diagnosis is vital?
A Yes, absolutely. The hard work and dedication by parents to help improve the quality of their children’s life is paramount. Parents need to be fully dedicated to an intervention plan: there is no magic pill as autism is a complex disorder. Parents are the leading players in the partnership we develop. I see their engagement as being the most important factor in predicting the prognosis of the child’s progression. Some early intervention plans do lead to a loss of diagnosis, something that is referred to in the literature as the optimal outcome rather than cure.
Q How do your form a diagnosis?
A We use the gold standard diagnostic tools called the ADOS-2 (Autism Diagnostic Observation Schedule-2) and ADI-R (Autism Diagnostic Interview-Revised) in addition to a range of psychometric assessments which include the Social Communication Questionnaire (SCQ), Gillian Autism Rating Scale (GARS), the Vineland Scale and the Social Responsiveness Scale (SRS-2). These psychometric tools are very informative in reaching an opinion on a possible Autistic Spectrum diagnosis and often are sufficient to share the findings with the child’s paediatrician seeking the NHS to provide a diagnostic assessment as rapidly as possible.
Q Do you have personal experience of autism?
A Yes, my son, who is now 23 has autism. I faced the same challenges as many do, although his story, particularly the circumstances of his regression into autism, are very unique. He became very unwell at six years old, and prior to that he was a verbal (bilingual) child who was full of energy. Suddenly he lost everything in the space of two weeks and became completely nonverbal for a year and a half. You can imagine how terrifying it was and there wasn’t really anyone to turn to. Professionals told me: “we somehow missed it and it’s autism”. I had to understand why it was happening to him and what I could do. I already had a PhD in biological sciences so was able to undertake a critical review and analysis of scientific and medical literature, and I had the opportunity to meet practitioners in France, the US and the UK who also contributed to understanding what happened to my son. I took my son out of school and home educated him as the school could not meet his needs. So, for four years, I studied, researched, educated and supported my son in his learning and development. It is testament to him that I am where I am today.
I remember those days like yesterday and I am mindful of how hard it is for parents and the children. All sorts of emotions fly around at the time of diagnosis; some parents are in denial, whilst others have already passed the grieving process that starts with the diagnosis and embrace the new paths that lie ahead, even though they are unknown and atypical. It is an extremely sensitive time for children and parents.
Q Do you have any adults that come to you for a diagnosis?
A I have a number of ‘adult patients’, especially high functioning people who have never been diagnosed. They undertake their own research and come to the conclusion they may have autism and would like to know if this is indeed the case as a way to understand themselves better. Many have health issues, for example Lyme Disease, and many come who can barely manage to live independently, their lifestyle and diet particularly can be very poor. Many suffer from mental health issues.
Q How can you help these children and adults?
A A number of physiological abnormalities can be identified in children with autism: increased inflammation and oxidative stress, abnormal mitochondrial function, abnormal levels of neurotransmitters, impairment in sulfuration and methylation pathways, chronic infection issues, as well as toxic overload. Whilst some gene mutations and variants are found in a small (5%) proportion of cases, there is no lead candidate gene or genes that explain the condition as a whole and its features.
Individuals with autism benefit from a range of dietary nutritional interventions which target the identified metabolic and physiological abnormalities. The interventions are multi-factorial and are targeting the identified clinical issues through dietary and nutritional changes. NADPlus addresses several of the pathways that can be affected, energy metabolism and mitochondrial function, the production of neurotransmitters and even the epigenetic modulation of gene expression.
These approaches are often used in combination with behavioural modification strategies such as Applied Behaviour Analysis and sensory integration therapy. The potential benefits of these interventions are huge for the individuals and their families.
All these changes are put in place one step at a time, following a detailed diagnosis of the physiological deregulations at play.
We do not advocate the use of medications such as Ritalin, or an antidepressant. It’s not about just drugging someone, it’s about understanding the individual. It’s a lifestyle change.
Q Are we as a nation getting better at screening for autism?
A Schools are getting better at identifying the condition. In Scotland, which is also where I have a practice, schools carry out a yearly census that accounts for the number of children with a diagnosis of autism, as well as children with a learning disability, social emotional difficulties and communication difficulties. The current rates of ASD diagnosis in school is of one child in 40, which is 2.5% of the school population. This amounts to one boy in 29 as there are more boys than girls who are affected. In England and in many EU countries, the education system is not forthcoming with such yearly census of children diagnosed with ASD.
Q What about outside of the UK?
A I just returned from China where health professionals screen children every six months for a period of six years, and that starts at birth. They argue that the age at which children are diagnosed is two, which is much sooner than it is in the UK. I have not seen any official statistics, but diagnosticians believe the rate in China is of 1% and estimate that 10 million children have autism.
Q Which sex is more likely to have autism? Boys or girls?
A It is thought, depending on the studies, that there is between one girl diagnosed with the condition for every three to four boys, but it is understood that more girls, undiagnosed, have the condition. Girls are generally less aggressive and better at copying social affect, so they appear social to some extent, smiling and showing a wider range of facial expressions, but deep down they struggle to understand their social world. There are studies that show that a quarter of young women suffering from anorexia have a diagnosis of high functioning autism: they obsessabout calorie count and physical exercise and have body dysmorphia.
Q What is your opinion on the results of dietary changes with patients on the autism spectrum?
A There have been a number of clinical evaluations made regarding the benefit of medication in individuals with autism. The UK national guidelines are clear: antipsychotics and antidepressants should not be used to manage the core symptoms of ASD in children and young people.
Whilst the use of Methylphenidate (e.g. Ritalin) may be considered for management of attention difficulties/hyperactivity in children or young people with ASD, the side effects should be carefully monitored.
The Autism Research Institute in the US has gathered thousands of responses from parents on the outcomes of medication compared to that of dietary nutritional approaches.,The outcomes from dietary changes such as removing gluten, milk and sugar were reported by 3,593 parents. (69%) reported their child benefited from the dietary changes, 28% reported no effect and 3% reported some side effects. The ratio between better than better to worse was 28-1.
The same survey reported on the outcome of Ritalin – 4,256 families reported using this drug. Of those, 29% said their child improved as a result, 26% reported no effect and 45% reported some effects. The ratio between better and worse in that case was only 0.621.
Q What is your opinion on using medication with patients on the autism spectrum?
A The problem with medication, such as Ritalin or antidepressants, is there are side effects. These include sleep difficulties, loss of appetite or the reverse, weight gain with little benefit to the behaviour and mood, or even what is targeted with such medication, attention or mood in the case of an antidepressant. What is more effective is to provide a targeted individualised approach that is based on the deeper understanding of the individual’s physiological imbalances. We look at individuals as a whole, including their lifestyle and eating patterns.
Q Do you believe medication should be stopped?
A The national guidelines state some medication may be considered for managing some symptoms associated with autism such as attention/hyperactivity, but do not address the core feature of autism. The other problem with these types of medication is that generally speaking, addressing symptoms and not the root causes of a problem is not an effective medical approach. On the contrary, until we have addressed effectively the root causes of a problem we need to be fully aware of the symptoms, so suppressing them does not help. I must stress that it is not advisable to stop a medication without involving the prescribing doctor.
Q So, do you believe in nutritional supplements?
A Yes, I do, but initially there is no point in giving a supplement without having full evidence of its need and without addressing the dietary needs of a person first.
Following a detailed physiological diagnosis, I have found that there are many health issues affecting a child and commonly it is diet and immune issues (chronic infection, inflammation and allergies and auto-immune disorders) and digestive health. The immune system is often central to autism and is in fact central to many disorders such as chronic fatigue, Lyme Disease or cancer. Nutritional deficiencies, poor gut health, infections and the wrong foods will all contribute to a deregulation of the immune system. It is amazing how many children have such a terrible diet. I offer a treatment plan that is implemented step by step, starting with the diet.
Q Why would you use a supplement if a diet is rectified?
A The supplements are incredibly important to target the identified phsyioglogical deregulations, nutritional needs and rebalance digestive and the immune system.
Q Which supplement do you give to your patients?
A I am particularly interested in NAD+ (NADPlus is a trade name for Eudamon’s supplement) and it is not easy to come by. The one I use comes in pill format. I recommend and use the Eudeamon range of nutraceuticals, specifically NADplus. I am very impressed with the results of this supplement. The effects are mostly seen in attention, energy level and even cognition.
Q What exactly is NAD?
A Nicotinamide adenine dinucleotide (NAD+) is a coenzyme essential to health which when deficient may contribute to the development of mitochondrial disorders and ageing. NAD+ regulates key cellular metabolic function, including energy metabolism and neurotransmitter production, serves as an extracellular signaling factor and is implicated in the regulation of gene expression through epigenetic modulation. It has a number of therapeutic applications, including addiction, ADHD, Parkinson’s Disease, obesity and ageing.
Q Who are Eudeamon?
A This company is the brainchild of Jane Barnfield-Jukes. Jane is an experienced integrative psychotherapist/counsellor, and over many years’ experience, recognised that her clients needed additional nutritional support during their journey towards a more balanced, calmer state of mind. She created Eudeamon to fulfill this goal.
Q Lastly, what is your wish for autism?
A I hope that professionals would have a fuller understanding of what autism is to enable the fullest identification of childrens’ needs from a very young age and address them through early intervention. Medical professionals should be better trained in diagnosing the health issues, the so-called comorbidity health issues, that are underlying autism and provide access to intervention as early as possible.
For more information on Dr Amet’s practice, Autism Treatment Plus, please contact autismtreatment.org.uk
Thinking Autism: a charity dedicated to raising awareness on the comorbidity health issues associated with autism, www.thinkingautism.org.uk
To find out more information or to purchase NADplus or another Eudeamon supplement, please contact: www.eudeamon.com