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Common Medical Problems in Autism Spectrum Disorders A guide by parents for parents and carers
“Care providers should be aware
that problem behaviour in patients with ASDs may be the primary or sole symptom of the underlying
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medical condition.
Consensus Report, Pediatrics, Buie et al., 2010
“At this point, I think there is enough evidence to say that
while autism certainly involves the brain, it is really a problem of the whole body, including the brain, from molecules to cells, from organs to metabolism, from immune to digestive systems. Even for those with autism who show no obvious medical problems, take a
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careful look for hidden issues. Martha Herbert, MD, PhD, ‘The Autism Revolution: Whole-body strategies for making life all it can be’
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“Treatment of comorbid medical conditions may result in a substantial improvement of quality of life both of the child and their parents. What investigations should be implemented can vary both within the autism spectrum and individually. Isaksen et al., 2012 ‘Children with autism spectrum
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disorders: The importance of medical investigations.’
People with ASD suffer medical problems more commonly than their peers. Further to this, their symptoms may be different from what is normally expected, but, if appropriate treatments are provided, quality of life can improve and symptoms of ASD can diminish, sometimes dramatically. Recent studies have shown that many medical conditions are significantly more common in people with autism compared to the typical population, including: eczema, allergies, asthma, ear and respiratory infections, gastrointestinal problems, severe headaches, migraines, and seizures. It is also a sad fact that mortality is significantly increased in autism, with death rates being more than three times higher than the general population. Premature deaths in autism are mostly the
result of co-occurring medical conditions such as epilepsy, respiratory, gastrointestinal and cardiovascular disease. Risk of epilepsy and premature death increases with the severity of autism. In spite of their increased health care needs, many people with ASD are not receiving appropriate attention and treatments. There are several factors that prevent people with ASD from getting proper health care. Communication difficulties are a defining characteristic of ASD and more severely affected people may have almost no ability to explain their symptoms. As well, people with ASD may not localise the pain as we would expect and their symptoms may not be the same as found in the non-ASD population. However, the most common reason preventing people with ASD from
PARENT’S STORY My son had severe gastrointestinal problems from an early age. After his regression, he developed self-injurious behaviour, violent outbursts and prolonged bouts of sobbing and crying. I was not prepared to accept his paediatrician’s opinion that his chronic diarrhoea was ‘just part of his autism’, and pushed for a referral to a gastroenterologist. An abdominal X-ray revealed impaction of the colon, causing distension of the rectum. Despite symptoms suggestive of diarrhoea, my son was actually suffering from severe and chronic constipation, and the violent and self-injurious behaviours were, in fact, manifestations of pain. Treatment of his gastrointestinal issues, mostly through diet and supplementation, was key to restoring his general health and well-being. He is immeasurably healthier and happier than in the dark days of head-banging, hand-biting and inconsolable screaming. Despite his communication difficulties, he has the ability to reach out to people and his personality shines through his autism.
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PARENT’S STORY My son has severe autism and very little speech. When he was eleven, he suddenly became very agitated and aggressive. He was charging at people, hair pulling, scratching, kicking, etc, as well as self-harming several times a day for no obvious reason. We were told by health professionals that puberty was the reason for this behaviour. I couldn’t believe that puberty would impact so suddenly and so drastically. In desperation we followed the advice of the professionals and put him on an anti-psychotic drug. This had little effect on the outbursts, instead it triggered his first seizure. During a dental check up, our special needs dentist told us our son’s teeth were badly eroded, it was likely caused by either fizzy drinks or acid reflux. As he never has fizzy drinks we went back to the paediatrician who agreed to trial reflux medication. The aggression stopped overnight and I had my old loving, gentle son back. He must have been in terrible pain. I eventually weaned him off the medication and have kept the reflux at bay through diet and the occasional over the counter remedy. The only times the aggression has returned have been when my son has been ill and in pain. Aggression is not part of his autism but is a symptom of real and acute pain. receiving appropriate health care is diagnostic overshadowing. Diagnostic overshadowing is far too common because of the widespread but erroneous assumption that a diagnosis of ASD is an explanation for any and sometimes all behaviours and symptoms. Many parents have reported to our charity that medical professionals have dismissed their concerns regarding self-harming, aggression, night-waking, change in appetite, severe anxiety, and many more as ‘just autism’. None of these behaviours are part of the ASD diagnostic criteria, and there is much evidence to show that behaviour is often the result of a physical cause, such as reflux pain for example.
Beyond relatively straightforward treatment for conditions such as reflux, there are practitioners and researchers investigating complex health issues often found in ASD such as mitochondrial impairment, altered immune responses including allergy, gastrointestinal problems, and autonomic dysfunction. Current research into and successful treatment of these difficult health issues are making it clear that ASD is a whole body disorder, with the symptoms used to diagnose autism being the result of complex physical problems among many body systems. The barrier to treatment lies in the fact that there are few researchers and practitioners taking this whole-body approach.
Treatment for relatively straightforward medical issues such as reflux can have immediate positive results but diagnostic overshadowing can have incredibly negative outcomes: unnecessary pain and suffering, increased violent behaviours, avoidable psychotropic drugs, diminished abilities and quality of life, even premature death.
In a 2009 survey of our members, more than 95% of respondents who had used biomedical treatments for autism found those treatments to be beneficial and 24% found those benefits to be life-changing. You can learn more about health problems and ASD and read stories from some of our members at our website www.treatingautism.co.uk
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The table below is designed to help parents and carers better understand symptoms or behaviours they may observe. Behaviours which may indicate an underlying comorbid illness include: Sudden change in behaviour Loss of previously acquired
skills Irritability and low mood Tantrums and oppositional behaviour Frequent night-waking or general sleep disturbance Teeth grinding Change to appetite or dietary preferences Heightened anxiety and/or avoidance behaviours Repetitive rocking or other new repetitive movement Walking on toes Posturing or seeking pressure to specific area Extreme sensory sensitivity (eg covering ears with hands), tactile defensiveness, sensitivity to light
Behaviour around evacuation Onset of or increase in aggression Self-injurious behaviour: biting, hits/slaps face, headbanging, unexplained increase in self-injury Constant eating/drinking (‘grazing’ behavior) Frequent clearing of throat, swallowing Mouthing behaviours: chewing on clothes Facial grimacing, wincing, tics Tapping behaviour: finger tapping on throat Sobbing ‘for no reason at all’ Vocal expressions of moaning, groaning, sighing, whining Agitation: pacing, jumping up and down Blinking, sudden screaming, spinning or fixed look
Pain can be acute or chronic, progressive or static. Common sources of pain and discomfort include: Headache Earache Toothache Sore Throat Reflux Oesophagitis Gastritis Colitis Soft or hard stool
constipation (underlying cause will be relevant) Small Intestinal Bacterial Overgrowth Musculoskeletal injury or disease Seizure Disorder (including subclinical crisis) Allergy Disorder
To find more about Treating Autism or to join us as a member visit www.TreatingAutism.co.uk By joining our charity you will receive a free copy of the book The Autism Revolution, by Martha Herbert MD, PhD or another book of your choice. Membership also gives you free access to our library with hundreds of autism books and DVDs as well as discounts at dozens of autism friendly businesses and our conferences. To request papers copies of this document and/or a full length document prepared for professionals, please contact us at mail@treatingautism.co.uk
FOR PARENTS BY PARENTS Treating Autism is run on a voluntary basis. www.treatingautism.co.uk