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.
Signs of autism in children
Early signs or ‘red flags’ that may indicate an ASC diagnosis.
0–12 months
Avoidance of/ limited eye-contact
Limited smiles or other warm, joyful expressions
Limited back-and-forth sharing of sounds, smiles or other facial expressions
Any loss of speech, babbling or social skills
Flat or inappropriate facial expressions
Limited babbling
12–24 months
Unresponsive to their name being called
No single words
No two-word spontaneous phrases
No meaningful two-word phrases (not including imitating or repeating)
Any loss of speech, babbling or social skills
Flat or inappropriate facial expressions
24 months and over
Repetitive stimulatory behaviours such as hand flapping, jumping, running back and forth, or repetitive play with toys such as lining up of objects
Limited response to requests for attention
Limited social engagement
Any loss of speech, babbling or social skills
Flat or inappropriate facial expressions
Difficulty understanding or talking about feelings
Limited interest in unusual objects and toys
Limited engagement with others during play
Reduced gestures such as pointing, showing, reaching or waving