COEXISTING CONDITIONS AND THE MEDICAL SIDE OF AUTISM
AUTISTIC SPECTRUM DISORDER (ASD) is a label for a complex list of conditions and disorders. Your child may display many or just a few of the criteria necessary for this diagnosis to be applied to them. When you meet other parents and their children, you will realize how broad the label ASD is and how very different the children diagnosed with this label can be.
Classic Autism
Children at the more severe end of the spectrum will be probably be diagnosed at a much younger age because their symptoms are more obvious and more extreme. For example, a child who has no spoken language should be identified as having a communication disorder by the age of three. Children with more severe symptoms were previously labelled as having classic or Kanner’s autism, which means autism that is identified in early childhood. Sometimes it is also known as childhood autism, but unfortunately this term implies that the condition may be only childhood-related and that these children will somehow grow out of it and therefore no longer be autistic in adulthood. It is now thought that some symptoms of autism may be detectable at a very young age, i.e. from around twelve months. There are research programmes currently looking at very young siblings who already have a family history of autism to try to establish how early some of the symptoms of autism may be present and detectable.
A child at the higher end of the spectrum (for example, with a milder form of autism like Asperger’s syndrome) may not be identified until much later in childhood or even into adulthood. In the case of a child with Asperger’s it may be that you have known for a while that their behaviour is somehow different from their peers, but it may take many years for them to be diagnosed as such. There may be no obvious issue, e.g. language delay, that would alert you to the fact that your child needs additional help. A child with Asperger’s will have problems that are more to do with social interaction and behaviours not usually picked up until school age and, as such, it may not become apparent for quite a few years later that your child has Asperger’s.
Until recently, autism and Asperger’s were two different diagnoses. In 2013, the Diagnostic and Statistical Manual 5 (DSM) of the American Psychiatric Association (APA) was published. This stated that officially, they are both now under the umbrella term of autism spectrum disorders. Although the DSM is produced by the APA, it influences diagnosis across the world. Anyone with a previous diagnosis will not lose that diagnosis, but from now the diagnosis will only be that of ASD, whatever the level of autism a child is deemed as having. This is intended to aid people in obtaining a diagnosis and therefore to get the help they may need, but in some ways it has caused more confusion. Unofficially, children will probably still continue to be labelled and separated into the two original categories. Certainly, most parents are quite clear about which label applies to their child.
No child will fit an exact criterion. This is true even of identical twins where the chances of autism in both twins is very high but not totally 100 per cent, which implies that there has to be an environmental influence and that it is not down purely to genetics. Identical twins where one or both twins have autism are very important in research because of this anomaly. In non-identical twins the chances of both twins being affected by autism are the same or slightly higher than with another sibling.
Every human being is an individual and personality and physical make-up also has to be taken into consideration. Autism is not a quantifiable condition and cannot be exactly measured. A child with a hearing or visual problem may be given a precise measurement that states exactly what their visual or hearing deficit is and their results can usually be plotted on a chart or scale. There are no figures or precise measurements that can be applied in autism. Even if your child completes a range of tests, these will not necessarily place them at a certain level as your child may perform higher in one test than another and there is no single definitive test. Social interaction cannot be quantified, also.
No Medical Tests for Autism
From a medical point of view, autism cannot be diagnosed with any specific medical criteria such as blood tests or brain scans, so the diagnosis has to be made on observational factors and not finite physical ones. It is often a developmental paediatrician who makes the diagnosis, although it is not currently seen as a medical condition. After the initial diagnosis, you will probably not see a paediatrician again as your child’s care will then become the responsibility of the educational system and not the health system. You may, of course, be referred to specific specialist doctors if your child additionally has a medical problem that needs care and treatment, e.g. epilepsy or diabetes. There are no autism doctors who actively treat autism in mainstream medicine. There are paediatric neurologists or psychiatrists who may diagnose autism, but they do not treat autism as it is not currently a curable medical condition. They may treat some symptoms of autism, such as extreme anxiety, with medication. However, there are many therapeutic options to help aspects of autism. Examples of these include behavioural programmes that modify your child’s behaviour, which can do a great deal to lessen the symptoms or severity of your child’s autism.
Autism Cannot be Quantified
Autism can never be precisely measured, or sometimes even diagnosed accurately, because of the wide range of issues and problems that it can cause. You may be able to get a speech and language assessment giving an approximate score analysing your child’s language. This might give them an age equivalent language level, but as the tests are devised for children without autism, they are still not a true level of your child’s ability. Language can be acquired in a different way from other children so that your child may have sophisticated language in some areas but not in others. They may have a higher level of receptive (understanding) language than expressive (that they are able to speak back). In rare instances, a few children who are essentially non-verbal have been found to be able to type and communicate via computers using sophisticated language.
Your child may be advanced in some areas of development and delayed in others. They may be having a bad day when the tests are carried out or be unable to respond properly to testing due to outside factors affecting them. If they are noise sensitive, they may be overwhelmed and unable to cooperate. Tests are often performed in an unknown environment, which straight away will put many children at a disadvantage. Even if your child is assessed at home, it will often be by a stranger whose presence may be disturbing. If your child is made to wait for too long in a strange waiting-room, you may rapidly lose any attention your child may have had if the test had been carried out promptly on your arrival.
I needed an occupational therapy assessment for tribunal, which I could ill afford at the time. It was private and very expensive, and because my son was kept waiting for over an hour, he was too tired and upset to do any of the tests. The subsequent report we received was so inaccurate that we couldn’t even submit it to tribunal.
Your child may not perform well for someone they have never met. Although they are capable of doing a test, they may not understand what is being asked of them due to their communication problems. Your child’s test results can be heavily influenced by the tester’s own experience in gaining the confidence of a child, being able to impart what they actually require your child to do and their level of knowledge of children with autism. Too many factors like this affect any testing and analysis that your child may need.
All the psychological tests and cognitive tests may just indicate your child’s mood and ability on that single occasion. There are a battery of written tests like the Vineland Adaptive Behaviour Scale, which scores for social abilities and looks at your child’s ability to learn new skills or cope with environmental changes. Some of these tests can be completed by the parents or by other people who know your child well and so your child’s ability to cooperate is not required. The results may help professionals working with your child to understand some of the problems which you and your child may have with everyday living.
Genetic Factors of Autism
About the only tests with any total accuracy may be blood tests, which in themselves can be hugely stressful for your child. At least the results are absolute, although it is only really chromosomal disorders such as Fragile X that can be detected in blood tests. There are no markers for autism in blood so, for most children, a blood test will not yield any answers
Fragile X
The leading known genetic cause of autism is Fragile X, which accounts for approximately 5 per cent of children with autism. This is due to a mutation on the X chromosome. Boys have only a single X and a single Y chromosome, so if they inherit this condition they are more likely to be affected than girls who carry two Xs. In a girl, if only one X is affected, the other will be undamaged, which may result in the girl being a carrier of the condition but otherwise unaffected. Some girls will have symptoms as a result of the damaged X, but usually only a third will have learning difficulties. Therefore, more boys are affected by Fragile X than girls. The symptoms of Fragile X are very similar to those of autism, but only a small number of children with this condition do actually have autism. Fragile X can be diagnosed by a blood test developed in 1991, and your child may be tested for this condition when they are going through the diagnosis process for autism.
Down’s Syndrome
Some children may have another known genetic condition alongside their autism. Children with Down’s syndrome are now known to have a higher incidence of autism than the general population; around 10–15 per cent of children with Down’s syndrome now have a diagnosis of autism. This knowledge is fairly recent and previously any additional problems a child with Down’s syndrome had were seen as part of the Down’s syndrome diagnosis. Again, children’s abilities with this condition can vary enormously with very different levels of learning difficulty and acquisition of speech in the same way that all children on the autistic spectrum vary.
Approximately 2–4 per cent of children with autism have Tuberous Sclerosis (TS). This is a genetic disorder in which tubers or lesions grow in various parts of the body, but especially in the brain. Although the majority of children with TS are not diagnosed with autism, around 43–61 per cent of children with TS have symptoms of autism. Autism in these children may be diagnosed at a later age due to the progression of the disease, which may in time cause autism alongside other symptoms.
There is a high incidence of epilepsy among the autism population. This is discussed further on page 83.
Apart from these known identifiable medical conditions there are also other coexisting disorders that many children with ASD have as well and which are also classified as being autistic spectrum disorders, such as dyspraxia and ADHD.
Dyspraxia
Dyspraxia is a form of developmental coordination disorder (DCD). It is in the category of neurodevelopmental disorders in the APA’s Diagnostic and Statistical Manual of Mental Disorders and is classified as a motor disorder. It is lifelong and cannot be cured, but there are many things that can be done to make life easier for those who have it.
It affects fine and or gross motor coordination. This may cause problems with balance and timing. It can also cause difficulties in spatial awareness (proprioception), which is the ability of the brain to process where different parts of the body, e.g. the limbs are. This can cause clumsiness where children with dyspraxia often knock over objects or bump into objects and people. This clumsiness is often the only problem that people recognize as being part of having dyspraxia.
However, there are other unseen issues that children with this condition have problems with. These include problems with planning. They may not be able to follow and remember instructions in sequence. They may have problems in organizing and carrying out everyday movements and procedures. A child with dyspraxia, for example, may need help to dress themselves. Not only will they have motor problems doing up buttons and zips, but they may also have issues with dressing in the correct order and need help in putting their clothes on in the right sequence. So a child with dyspraxia may put their clothes on back to front, for example.
Poor short-term memory can also be an issue. They may not be able to remember more than one instruction at a time. For instance, if asked to go upstairs and carry out a task, they may go upstairs and then forget why they are there as they have forgotten the task. They may start doing something else and not come back downstairs again. There is an increased likelihood of them losing things, too, as they cannot remember where they put something.
There is also a condition known as developmental verbal dyspraxia. A child may have difficulty in learning to talk because they have problems controlling the speech organs, such as the lips and tongue, to make certain sounds. So a child with autism who additionally has verbal dyspraxia will be doubly hampered in learning to talk.
Children with dyspraxia can be greatly helped by therapists such as occupational therapists (OTs), physiotherapists and SLTs. OTs often go into schools to help with issues around handwriting and pencil grip, throwing and catching balls, core-body strength and many other issues. They can often provide equipment, both at home and at school, and exercises to help with motor skills.
A child with poor memory skills may be helped with visual prompts such as photos in a sequence to help them remember the order in which they need to carry out a task such as dressing. They will also benefit from routine as certain tasks can then become learned. A child with autism who does not like change will find learning new routines even harder if they also have dyspraxia.
Attention Deficit Hyperactivity Disorder (ADHD)
As its name implies, this condition causes problems with inattention, hyperactivity and acting impulsively to a degree not appropriate for the child’s age. Not every child with ADHD has all the symptoms, though. In the UK, the National Institute for Health and Care Excellence (NICE) has guidelines for the diagnosis and management of ADHD.
Based on the criteria provided in the Diagnostic and Statistical Manual of the APA, there are three sub-types of ADHD that cover the symptoms of ADHD presented by a child:
While many people in the population may show some signs of these symptoms to varying degrees, it is only those with a significant severity of symptoms who will actually be diagnosed with ADHD.
ADHD is the most common behavioural disorder in the UK. Various estimates suggest it affects around 5 per cent of school-age children in the UK. Around three times more boys than girls are diagnosed with the condition. To be diagnosed within the criteria of the DSM 5, symptoms must be observed in multiple settings for six months or more and to a degree that is much greater than others of the same age.
Some research has shown that 30–80 per cent of children diagnosed with autism also have ADHD and that more than half of the children diagnosed with ADHD meet the diagnostic criteria for autism spectrum disorders. So there is a strong link and increased likelihood that a child diagnosed with autism may also have ADHD as a coexisting disorder.
Young children with autism often display signs of hyperactivity and inattention, particularly when reaching school age, but this may lessen with time as they mature. Therefore, an ADHD diagnosis may not be appropriate until a child is older and if the symptoms still persist. Because autism is seen to be a more significant disability, that is usually the primary diagnosis given at an early age, and a diagnosis of ADHD may not be made at the same time or may not be deemed as necessary. If a child is assessed as having special educational needs because of their autism, any symptoms or problems they have should be addressed by their educational plan so an additional diagnosis may not be particularly useful or necessary at an early stage.
Of my four boys, two have ADHD in addition to their autism. One of the boys was formally diagnosed at around the age of seven as he needed medication for his condition, which was greatly affecting his ability to learn. He was unable to pay attention, sit still or concentrate on anything for any length of time. With the medication, he learned to read and write within a short period of time and we were also able to manage his behaviour better. Within a year or so, we were able to take him off the medication. He was also having intensive behavioural therapy at the same time.
Our other son has never had a formal diagnosis of ADHD as his educational needs are met by his statement of special educational needs. He has more verbal language than his brother and so we were able to manage his behaviour a little better without medication. Therefore, there seems to be no reason to have another diagnosis added.
It may be quite difficult to distinguish between the two diagnoses if your child has both autism and ADHD.
ADHD is not considered to be a learning disability but around 20–30 per cent of children with ADHD do have learning disabilities.
Treatment for ADHD
Treatment for ADHD usually involves behaviour therapy of some kind. This is often behaviour management that may use rewards to try to help your child manage the ADHD themselves. They will need strategies to try and combat their impulsive behaviour. In reality, this can be much harder than it appears on paper. A child who is impulsive reacts to a situation almost instantly, i.e. without thinking about it at all. While others would weigh up a situation and whether or not they should go ahead and do something, a child with ADHD will not stop to think and will just go ahead and do it. In later years, these are the sort of children who potentially end up in serious trouble for crimes such as setting fire to a building. Their sense of what is morally acceptable may become blurred as their need to carry out an impulsive action takes over from any other logical thought. So those children with severe issues in this area need intensive help at a young age to prevent them growing up and causing harm to themselves and others. As a parent, it can be a huge worry if your child is very impulsive. From a young age, you will be judged by your child’s behaviour, especially as they will appear simply to be ‘naughty’ to others who may wonder aloud about how badly behaved your child is.
By school age, your child may also be labelled as ‘naughty’ and be judged by this from the start of their school years. They can be a poor role model for other children, who may admire them for their daring acts. Young children have ended up being excluded from school in severe circumstances, so it is vital to try to address these problems as early as possible.
Alongside behaviour therapy for your child, you may be offered parent training, either alone or in groups. This will offer you specific ways of talking and playing with your child as well as effective techniques to help you to help them manage their behaviour. Such training will also teach you how to react to their behaviour and ways to defuse difficult situations or even prevent them from occurring.
Those children with inattentive ADHD are more a problem to themselves than to others. They will have a much reduced ability to learn due to their inability to concentrate and pay attention. In a child with autism who desperately needs to learn important skills like speech and language, this inability to attend compounds the whole situation. It is already hard to teach a child with autism who may have other issues, such as sensory or motor problems, that hamper learning. Adding ADHD to these other disorders makes teaching skills to these children even harder.
If your child is able to acquire some language or to read instructions, then you have a basic structure with which to teach them other skills. If they cannot stay still long enough to learn these basics, it may be very difficult to move on to further learning.
A reward system that rewards a child for keeping their attention focused for a limited time may be beneficial. A child will learn to do a short task and then receive a reward for completing it. This time can then be very gradually increased. It may be done via a verbal countdown of time to begin with, or even a clock with an alarm when they can manage longer periods of time.
An OT may be of significant help and support for you and your child. Your child may need a sensory cushion to sit on, which stimulates them and enables them to sit still for longer periods. They may advise the use of small toys or objects to handle and play with while they are sitting still and perhaps watching or listening to someone. This may be more relevant in a child of school age to help them to sit for longer periods of time in a classroom.
A change in diet can also help a child who has ADHD. Sugar and food colouring or additives may aggravate symptoms. You may need to remove all these from your child’s diet and then experiment with giving them one item, such as something containing a high level of sugar and then noting any reaction they may have to it. Keeping a food diary in this way may be helpful as you may be able to pinpoint certain behaviours correlating with specific foods eaten on that day. A dietician may be able to advise on dietary measures that could reduce the symptoms of ADHD.
Sometimes it may be necessary for your child to be prescribed medication if it is felt that their symptoms are severe and affecting their lives. In some cases, medication can mean that your child is able to learn important life skills. Medication will only be prescribed by a qualified paediatric (children’s) doctor. The medication cannot cure ADHD, but will lessen the symptoms so that your child can concentrate better and feel calmer. Your child may need to take the medication every day or sometimes, just on school days. There may be side-effects so your child should be monitored carefully by the prescribing doctor.
The use of medication in ADHD is often controversial. Some believe that too many children have been prescribed medication in order to make life easier for their parents. Some children may be seen as being overly boisterous and very active and, in fact, with more exercise their ‘symptoms’ may be addressed. In some countries the level of medication and diagnosis of ADHD is very high. There are even some professionals who question the existence of the condition at all. Therefore, diagnosis should not be assumed too easily. A child should be observed in different settings, and other adults, such as carers or teachers, should also be included in the assessment. Sometimes children’s behaviour is much worse for certain caregivers for various reasons. This needs to be clarified before a diagnosis is made.
But for a child who already has a diagnosis of autism, the likelihood of them also having ADHD as a coexisting disorder is quite high, so in these children, the ADHD is likely to be of a physical cause and not due to other factors such as poor parenting or unhealthy lifestyles. In the same way that you are not the cause of your child’s autism, you are also not the cause of their ADHD. Most of your child’s symptoms will be present due to their disorder and not to anything you have or have not done. But, like autism, there is a lot you can do to help your child once you have a definite diagnosis.
Obsessive Compulsive Disorder (OCD)
There are other disorders that are also thought to be linked with autism, such as OCD. There seems to be a higher incidence of these disorders coexisting with autism than there does in the general population as a whole. This may be due to a genetic link, but has yet to be proven.
In OCD, a child or adult will have extreme repetitive behaviours. Many children with autism show repetitive behaviours and repeatedly do the same actions over and over again. Although sometimes people may assume from this that such a child has the symptoms of OCD, their repetitive behaviour may, in fact, be simply due to their autism, the difference being that in OCD the individual carries out repetitive actions because of anxiety. e.g. repeatedly washing their hands because they are anxious about germs. In autism there may be no anxiety involved and a child is more usually ‘stimming’ or carrying out an action over and over again because it gives them a form of pleasure to do so. Sometimes, a child with autism will show signs of repeated actions due to severe anxiety and then they may be classified as having symptoms of OCD. As with autism and ADHD, behaviour management can be very useful. A child may also be offered cognitive behaviour therapy, but this may not be very viable for a child who is non-verbal or has severe problems due to their autism.
Learning Disability
Autism is generally understood to be a developmental, behavioural or learning disability. Children diagnosed with autism may also fit into the category of having a specific learning difficulty that covers problems such as dyslexia and dyspraxia. Alternatively, they may be classified as having a learning disability depending on the severity of their issues and problems. A more severe learning disability may also be known as global development delay.
If your child’s problems are mostly behavioural or in the area of social interaction, then they may not easily fit into any category. This can make obtaining recognition and help for them much harder. They may meet the social impairment criteria for an autism diagnosis, but still may not be seen as having an additional educational need. Many children fit into several categories but will still be given the all-encompassing diagnosis of autism. So the fact that autism covers such a wide variety of symptoms and varies greatly in its presentation makes it difficult to categorize it into one type of disability.
The dictionary definition of a learning disability is ‘a condition giving rise to learning difficulties, especially when not associated with physical disability’.
‘Learning disability’ is the term that the Department of Health use within its policy and practice documents. In Valuing People (2001), the Department of Health describes a ‘learning disability’ as a:
Autism and Genetics
Some research suggests that autism may have a strong genetic link. In a family with a child with autism, the chances of another sibling also being on the autistic spectrum is increased. Although the risk of another child in the same family also being affected by autism varies depending on which expert you consult, it is often given as a 20 per cent increased risk as a minimum estimate.
There are some families where one or both parents have also been identified as being on the autistic spectrum themselves or where other members of the wider family unit are affected. Sometimes, after a child is diagnosed, the parents then look to themselves and realize that one of them may have undiagnosed symptoms, which means that they too may be on the autistic spectrum. In other families, there may be members of the wider family affected, such as cousins or uncles or aunts. Some families will have members of different generations affected and a strong family link to relatives being on the autistic spectrum. They may have varying degrees of spectrum disorders ranging from high-functioning autism (previously known as Asperger’s syndrome), which in previous generations may not have been diagnosed, to more severely affected individuals who again may have been given a different label before autism was identified as a condition.
Other families may have no previous history of any member of the family being affected by autism in any form. So might there be some autism due to genetic, hereditary factors and some due to environmental causes? Or, in fact, is autism caused by a combination of both an inherited risk and an environmental factor?
We were seen by the genetics departments of two London teaching hospitals after all three of my sons had been diagnosed with autism. The first consultant suggested our risk rate was around 50 per cent of having another child with autism. We sought a second opinion and were told by this second consultant that our chances would always be 20 per cent however many children we went on to have. Twenty per cent seemed a low enough risk so we decided to go ahead and have another child. Of course, a risk factor is only ever that – an educated guess – and we went on to have another son who was also diagnosed with autism at an early age. We wouldn’t be without him; he is a ray of sunshine in all our lives, but it shows that in different families perhaps different genetics apply.
The problem with the genetic theory is that no specific gene has yet been identified that could be solely implicated in the role of autism. There may, in fact, be multiple genes involved so that autism is not inherited from one parent but from a combination of genetic factors from both parents. Even if it is proven that there is a genetic cause, we still do not know what the trigger or triggers are that cause autism to develop in those children with a genetic susceptibility. Could the triggers be environmental, dietary, due to allergy, or even caused by a virus? Is it genetic and therefore inevitable from birth that a child will go on to develop autism? Or is there a susceptibility that may or may not be triggered at some point by one of many different factors? Is a child in the womb already destined to have autism or does the possibility of it happen after birth?
The number of children diagnosed with autism is increasing all the time. Some may argue that increased awareness of the condition is causing more children to be diagnosed than previously, or that the condition has always existed but been called by various other names. But even if the numbers are adjusted for children who may have previously been diagnosed with a different label, such as learning difficulties, it is still true to say that the number of children diagnosed with autism is increasing year on year. Most children with severe autism will be less likely in the future to have children of their own, so from a genetic point of view, this should mean that numbers decrease, but only time will tell if this will be so.
Children with severe autism are often born to parents who do not appear to have any aspects of autism themselves. So, are the traits and signs of autism more obvious in some families and perhaps silent in others? Is it possible that some parents carry the genetic risk while not having autism themselves like in many other inherited conditions? If two parents carry the risk factor, does the combination of their genes together cause an increased risk of autism in their children?
Autism is a spectrum and does not have exact criteria to measure how ‘autistic’ any child is, so it is never possible to say where on the spectrum a particular child is. There are so many symptoms and a child may have deficits in one area but excel in another. Trying to define whether a child is so called low-functioning or high-functioning is very subjective, but children are often placed into these rather vague categories. Those deemed as being more severely affected have usually been diagnosed at a young age, perhaps at the age of two or three. They are probably not talking or understanding language at this age, exhibiting unusual patterns of behaviour and are often very restless. They will receive a diagnosis at a younger age than those with less severe problems. As these children mature, some will do better than others in terms of improvement in many areas of life such as language, behaviour and social interaction. The ones who improve more may be reassessed at an older age as being high-functioning while those who retain the more severe aspects of autism may still be termed as being low-functioning.
Pain in a Child with Autism
Many medical illnesses lie hidden and unseen within the body. Most people are able to describe what sort of pain they are in, perhaps where the pain is located and how severe it is. A child with no communication skills may be unable to let you know that they are in any discomfort. This may mean that their medical issues are not addressed until much later than they would be in a child who is able to communicate and tell you what is wrong.
Extreme pain may present as a tantrum or in the form of a child self-harming (for example, hitting or biting themselves). In this instance, a child may be trying to distract themselves from pain in one area by causing a different type of pain in another. Because they may be unable to communicate either verbally or non-verbally that they are in physical pain, their behaviour may be attributed to the fact that they have autism and thus be dismissed as just another symptom of their autism. For example, a child with a severe headache may perhaps repeatedly hit themselves on the head, or hit their head against a wall in an effort to relieve the pain. A severe headache may also cause them to scream or to get very upset when they hear loud noises. This type of behaviour may often be due to sensory issues of some kind, but could also possibly be caused by a headache, earache or toothache. It can be very difficult sometimes to identify the cause of a child’s pain or resulting behaviour. A young child who has no communication problems will at an early age learn the word ‘Ow!’ and to point at where their pain is located. A child with autism and severe communication difficulties may have no means to let you know that something is hurting, and so the immediate cause of their behaviour is overlooked.
Sensory issues may cause a child to greatly dislike having their teeth brushed. This in turn can lead to tooth decay. Pain from toothache can be severe and if a child is unable to articulate that they have toothache, their behaviour may deteriorate.
Gut Problems: Constipation
Your child may have pain caused by a problem in their gut. Some gut symptoms may be noticeable even in a child who has no language or ability to communicate. Physical signs such as diarrhoea are very obvious. Bloating of the stomach or lower abdomen is easily visible. Constipation will be noticed earlier in a child who is not potty-trained as you will notice that they have not soiled their nappies. If your child is potty-trained and uses a toilet independently, you may not be aware that they are becoming constipated as they may not be able to tell you, and even if they could, they probably would not think that it is something that they need to tell you about. So, by the time you realize, the constipation may have been going on for a while. They may be in great discomfort, but unable to tell you.
Constipation may also be caused by a sensory issue and not just a physical one. It may be caused by a child resisting the need to pass solid waste. This could be due to a number of factors ranging from a fear of sitting on a toilet that is not familiar (for example, they may only defecate at home using their own toilet and refuse to use a toilet at nursery or school) to the fear of pain or discomfort when they actually pass a stool.
There could be many additional reasons. A child may, for an example, have an issue with the toilet seat being a different colour to that at home. The toilet may also be at a different height so they may feel uncomfortable sitting on it. There could be a sensory problem involving the room itself such as the smell or perhaps a dark room with no natural light, which may make them feel anxious in some way. There may be issues around embarrassment. Adults in hospital who are bed-bound often become constipated, partly from lack of movement or as a side-effect of medication, but one of the main causes is embarrassment at having to defecate in the presence of another person and to require the help of that person to wipe them afterwards.
If your child has had constipation in the past, defecating may have caused them pain at the time and so the memory of this pain may cause fear in the future. The problem then becomes a recurring one as they may try to resist the urge to defecate and try to hold onto it. Thus, the problem may begin as a sensory one and end up as a medical issue.
A child also needs to drink sufficient fluids throughout the day and some children do not like drinking very much and need encouragement just to drink an adequate amount. Again, sensory issues may be important here as a child may have very strict preferences as to what they will drink and from which cup or glass.
I am regularly asked for ‘Winnie the Pooh juice’, which is actually blackcurrant squash in a very old blue cup that many moons ago had a picture of Winnie the Pooh on it, now long since faded. I have to remember to show the cup to anyone else looking after my son as obviously there is no such cup in their eyes!
Impaction is a severe condition where a child is no longer able to defecate at all and so the gut becomes literally impacted or full of waste. This is obviously a very painful and potentially dangerous condition and needs careful medical management to overcome. There is no quick fix if your child ends up in this state and you must seek proper care from a doctor or hospital.
Sugar and Other Additives
For many children, not just those with autism, the removal of excess sugar in the diet is beneficial. Many manufactured foods have added sugar and other additives that can affect a child’s behaviour. Some artificial colours are known to increase hyperactive behaviour. Any parent will have noticed that a young child going to a birthday party and being fed vast quantities of chocolate and other sweet items will return home in a hyperactive state. High levels of sugar are also found in foods that may be natural, e.g. fruit, and not just in manufactured and processed foods. Where possible, encourage your child to drink water and not large volumes of fruit juice or canned drinks. Check the packs of breakfast cereals as these too can contain high levels of sugar.
Sleep can be hugely affected by diet; a hyperactive child will find it very hard to settle and fall asleep. So trying to eliminate foods that contain excess sugar that may cause hyperactivity can help your child to sleep and, in turn, may reduce hyperactivity during the day as your child will not be permanently sleep-deprived and tired. Anyone suffering from lack of sleep or broken sleep will feel constantly tired – ask any parent with a newborn baby or a baby who is teething – but they may also feel almost manic at times due to extreme tiredness.
Many parents report beneficial changes and differences in their children when the levels of sugar in their diet are reduced, so this is definitely something worth trying with your child.
Stress
Owing to the high levels of stress created by having autism, many children suffer from physical problems caused by chronic stress. For our children with autism, the world can be a bewildering place with sensory overload in the form of constant noise, activity and visual input. Because they have a heightened response to everything around them, life can be overwhelming a great deal of the time.
I may be in a busy shopping centre or at a crowded event and begin to feel overwhelmed and crave some peace and quiet. I always leave at this point as, if I am feeling like this, my boys must be feeling very much worse. Over the years, I have tried to anticipate the point at which any of my boys will be suffering from sensory overload and try to leave before that point is reached. This can be a fine line sometimes as it usually means leaving while everyone else is still having a good time.
Along with the sensory overload, most children with autism find everyday life in general stressful. They may be anxious about things we cannot even guess at. If we are lucky, we may be able to identify some of those things and try to help to alleviate the anxiety as best as we can. Your child may be able to communicate their anxieties verbally, but if they cannot talk it can be very hard to pinpoint what may be causing them stress. Your child’s own anxieties can range widely from a fear of inanimate objects, such as two different foods touching on a dinner plate, to a fear of social situations – and almost anything and everything in between. Your child may suffer from severe shyness or even a fear of people they do not know. Some children with autism also have a level of OCD, which, if severe, can shadow everything they do or experience. The need to line things up or sort things into categories such as colour is quite common in autism. If this order is not created, or allowed to be created, then your child may feel very stressed. Your child may be able to manage their world at home, but when not at home, the situation can be very different. Perhaps almost everything they do and everywhere they go may cause them some level of stress.
My boys have incredibly good memories for any past insult or perceived trauma. This means that they often carry a stressful memory with them when they re-visit a place or when they meet someone again.
So what effect does being constantly stressed have on the body? We know that in adults long-term stress can lead to nervous or physical breakdowns in some individuals. It can cause physical symptoms such as gut disturbances, headaches and the inability to sleep properly or relax. A constantly elevated heart rate or high-blood pressure can cause long-term damage to various organs of the body.
When we are stressed, the adrenal glands, which are situated in the kidneys, cause our bodies to produce additional adrenaline to help with the stress that the body is under. In a normal situation this is known as the ‘flight or fight response’ and is necessary to help the body to cope for short periods of extreme stress. It can cause a rapid heart rate and enable the person to keep functioning at an optimal level to help them get out of the situation that is causing them stress. In times of stress, such as exams or interviews or an accident, adrenaline will be produced. This is not necessarily a bad thing. People have been known to act heroically when under the influence of a high level of adrenaline. After the stressful situation is over, the person will often feel exhausted and need to rest. This is all part of normal functioning and is often necessary for human survival.
Ideally, stress should be eradicated from your child’s world, but unfortunately with autism this is not going to happen. We can only take measures to alleviate some of the stress. For some children, this may be as extreme as removing them from school and perhaps educating them at home for a while. For others, it may mean trying to alternate stressful situations with periods of rest. This rest may not be purely physical, like sitting still or resting, but might mean a complete break from whatever is causing stress to your child.
Most children benefit from regular breaks from our over-stimulating modern world and this may simply mean connecting more with the natural world outside. Activities out in the open air, parks, beaches and the countryside all seem to calm our children, who benefit not only from the exercise, but from unpolluted air and an absence of unnatural noise and stimuli.
When my boys were still at a stage of running off and had to be held onto at any time they were out of the house, being out in an open space such as a park meant we all had more freedom. Although they might still run off, at least we did not have to forcibly hold their hands so it gave them some independence. It also meant that they were safe from traffic or other hazards, so we could all relax a little – even if relaxing meant running across an open space to retrieve them!
There is still little understood or known about the connection between autism and epilepsy. Various studies show increased levels but an accepted figure seems to be that approximately one in four or 25 per cent of children with autism will have developed epilepsy by puberty. This is a very disturbing statistic, as epilepsy is a serious and frightening condition for any child to develop.
There are many different types of seizures or fits that can occur in a child with epilepsy, varying in severity from periods of absence previously known as petit mal to full-blown tonic-clonic seizures previously known as grand mal fits.
Absence Epilepsy or Petit Mal
If your child with autism is non-verbal and has periods where they appear to gaze into space and have no awareness of their surroundings, this may, in fact, be because they are having absence seizures. They may not have any physical symptoms so that they remain in the same position and have no shaking or trembling, but may appear temporarily vacant. They may be unresponsive to anyone or anything around them for a few seconds or minutes and appear totally unfocused. This can be a harder form of epilepsy to diagnose. It may be difficult to ascertain whether your child appears temporarily disconnected from their world because of their autism or because of a form of epilepsy. If you feel that absence epilepsy might be a possibility, you should seek advice from a doctor, who can carry out tests on your child.
Landau–Kleffner Syndrome
This condition was identified in 1957 by William Landau and Frank Kleffner. It can sometimes develop between the ages of eighteen months and three years, but most commonly occurs between the ages of three and seven. It is not included as part of the autistic spectrum, but may sometimes be misdiagnosed as autism. Its main symptom is gradual or sudden aphasia (language loss). So, in a child where the syndrome starts at a young age before language is acquired, it may be thought that the child has autism as they may have problems both speaking and understanding language. Where an older child who has developed normally and acquired language then starts to lose language, the possibility of this syndrome may be more obvious. Other symptoms include seizures. A small number of children have obvious seizures, but the majority have seizures during the night so these often go unnoticed. Such children may also be hyperactive and have a decreased attention span – again, symptoms that are often very similar to autism. The loss of language may occur over a long period of time, perhaps many months, so it may not be noticeable for a while.
A diagnosis is made by having EEG studies (electroencephalograms) of the brain carried out in a specialist hospital unit. Not many children with autism are offered EEGs, but if it is felt that your child had progressed normally for a while and then lost language, the possibility of this syndrome should be investigated.
Tonic-Clonic Seizures
Epilepsy often starts in the first three years of life, but some children with autism who have not had seizures beforehand do go ahead to develop epilepsy around puberty. These children may suffer from partial seizures or generalized tonic-clonic seizures.
Like autism, there is a spectrum in the severity of epilepsy, which is different in each child. There are varying types of seizure that may involve muscle stiffening alone, muscle stiffening along with jerky movements, sudden loss of tone or limpness, etc. The most serious and, unfortunately, the most common types of seizures or fits are those known as tonic-clonic seizures (grand mal fits). A child will stiffen and have jerky movements, fall to the ground and will lose consciousness. Again, the frequency or number of seizures varies from child to child.
A child having a seizure can be a frightening event for both the child and the carer. The child cannot control the seizure and prevent it from happening, although they may have some awareness that a seizure is on its way. If a child is non-verbal or has limited communication, then even if they get a feeling or a warning that a seizure is coming, they may not be able to tell anyone. The most important thing when a child is having a seizure is to keep them safe from danger and accidentally harming themselves. So if this happens to your child:
All carers and those involved in looking after your child will need to have knowledge and training on how to keep your child safe during a seizure. Your child’s carers need to know at what point they should summon medical help and call an ambulance (for example, if your child’s fit lasts longer than a specified time). Staff within your child’s school or nursery will also need to have adequate training. Some children may wear a medical alert bracelet or another form of identification so that information on their condition is readily available in an emergency. Emergency medication may need to be administered at the time in the form of a rectal suppository or medication placed within your child’s mouth – how will your child’s carers obtain this medication?
It is vital that your child has a diagnosis for epilepsy as soon as possible so that any treatment may commence. A child with suspected epilepsy will need to be referred to the care of a paediatric neurologist. A diagnosis may be made by various specialist tests, such as EEGs on the brain, which can be carried out while your child is awake or sometimes while they are asleep. In an active child with autism, performing some of these tests may not be easy and some children may require sedation in order for these to be carried out. Observation and record-keeping of any possible evidence of fits may also need to be kept, so sometimes the diagnosis can take a while.
There are various medications that can be prescribed to lessen the frequency or severity of the fits. As each child is an individual, sometimes it can be a long process to find the right drug at the right level for your child. It is not unusual for more than one drug to be prescribed on a regular basis. The drugs often need to be altered or tailored to your child as they grow as the drugs may become less effective with time. There may also be side-effects from the drugs, so trying to get the optimum levels to prevent fits occurring while also maintaining your child’s everyday good health can be quite complex to balance. One of the most common side-effects is general tiredness and fatigue, often described as feeling ‘groggy’. Your child may not be able to tell you other side-effects they may have that are causing them distress and increasing their difficult behaviours.
Some people believe that certain elements of a child’s diet might trigger seizures, such as artificial colouring or preservatives, sweeteners or monosodium glutamate (MSG).
Diet
There is a great deal of dietary advice aimed at alleviating some of the symptoms of autism. Any actual link between diet and autism is, however, as yet unproven. For the time being, though, some parents report a difference in their child’s behaviour after following specialist dietary interventions, such as removing gluten (found in wheat) from their child’s diet. A gluten-free diet is the one most commonly associated with helping children with autism, so you may be recommended to trial the diet by other parents. A great deal of information on various dietary interventions and exclusions can be found online, but be aware that often it is not proven medical advice that you are reading. As with all advice on possible therapies, you need to be careful and to take informed advice on whatever you decide to try for your child. This may involve the assistance of a dietician or specialist clinic and should never be anything that may cause potential harm to your child. In the case of trying a gluten-free diet, for example, if you ensure that your child has adequate nutrition, then the worst the diet can possibly do is cost you additional expense and effort, but it should not harm your child.
Some of the basic dietary advice is relatively easy to follow, such as cutting down on foods containing artificial additives or extra sugar (see page 80). Other dietary interventions such as following a gluten- or casein-free diet can be more complex and much harder to follow. If you decide to try any of these diets, proper advice should be sought so that your child has the nutrition they require for bodily growth and for proper brain functioning.