GETTING A DIAGNOSIS
ONE OF THE CRUELLEST twists in the diagnosis that is ‘autism’ is that nearly all children with autism will be born without any obvious disability (the exceptions being a child born with Down’s syndrome or another coexisting condition). When your baby is born, you will have absolutely no idea that he or she is anything but perfect. If you have a child with Down’s syndrome, you may be aware of this predelivery or from birth, but you will have no indication that your child too may additionally develop or show signs of autism in a few years’ time. But first, what is autism?
A History of Autism
The diagnosis of autism was first defined by Leo Kanner in 1943. He used the word ‘autism’ from the Greek auto (meaning ‘self’) to describe children with certain symptoms that meant they seemed to live within themselves. His definition of autism requires that symptoms are apparent by the age of three and is also known as classic autism.
The other two most well-known disorders in the autistic spectrum are Asperger’s syndrome, which is a milder form of autism in which there are no delays in language but there are significant problems with social communication, and pervasive developmental disorder – not otherwise specified (PDD-NOS), which may be diagnosed when the full set of symptoms or criteria for autism or Asperger’s syndrome are not met.
Very sadly, in the 1960s, Bruno Bettleheim, the director of a home for disturbed children, had a theory that autism was caused by cold and emotionally distant mothers whom he called ‘refrigerator mothers’. Bettleheim felt that these mothers were to blame for their children’s development of autism. At the time this was thought to be an acceptable theory. So, for an earlier generation of families with children with autism, there was little or no help or support available and, in addition, the mothers were blamed for their children’s problems. To us now, this seems inconceivably cruel and quite medieval in basis. Although his theory has been totally disproved, even now you may sometimes hear mention of it and some parents unfortunately may still feel, or be made to feel, that they are in some way to blame for their child’s autism. People may ask indirectly whether you suffered from post-natal depression or something which they may feel led to you not bonding sufficiently with your child. There is another disorder – if that is the right term for these conditions – whereby a child may be diagnosed as having an attachment disorder. This is a disorder that usually affects children who have been adopted or placed in foster care at a very early age and, although some of the symptoms may be similar to those presented by a child with autism, it is indeed a very different disorder with a totally different cause.
Did I Cause My Child’s Autism?
Do not let anyone try to tell you that in some way you have caused your child to have autism. Because it is thought that there is a strong genetic link, some grandparents do not wish to be implicated in any way and will try to ‘blame’ their child’s partner for any problems the grandchild may have. You may hear comments such as:
‘Maybe it’s because you were on the pill for a while, dear, before you had children.’
‘Perhaps it’s because you are a vegetarian.’
There is no substance to any of these comments as a reason why your child has autism. The thought of an inherited link is one which grandparents often do not wish to acknowledge or accept, so they may try to pin their own theories onto you. Do not take it to heart, but do not accept blame, either. You have done nothing wrong. Would you get the blame if your child had diabetes or was deaf? In the same way, why should parents (very often the mothers) get the blame – if there is, indeed, any blame to apportion – for their child having autism?
Acceptance of your child’s diagnosis is one of the very hardest things. Some people never really come to terms with it, but the more you are able to accept it, the better you will be equipped to deal with it and to help your child. And the first stage in this acceptance is that it is not your fault that your child has autism. ‘Four children with autism? You must have done something very bad in a past life’ – and this from a lady I did not even know! You will have dark days when you will allow yourself to wonder what you might have done wrong, but actually you will have done nothing wrong, so try to banish this negative thought if it pops up. Once you accept that you are absolutely not to blame for your child’s condition, you will also be better equipped emotionally to deal with anyone else who comes along trying to apportion blame to you, the parent. Try not to have regrets about what you may or may not have done during pregnancy or in the first few months after your child’s birth. It will not help you and it will not help your child. There are too many mothers of children with autism who still feel in some way to blame for their child’s condition, so it is important to keep emphasizing this point. This unnecessary guilt will consume you and add to any other regrets you may be holding onto, and will not help you or your child.
Why Does Any Child Have or Develop Autism?
Autism appears to affect children from a wide range of circumstances with no common denominator to predict its arrival. You may have conceived your baby naturally or via assisted conception (such as IVF); you may have given birth naturally or by an assisted delivery (such as a Caesarean section) – however your baby was conceived or delivered, you now have a baby with autism.
Two of my boys were delivered naturally (albeit with a lot of additional help being twins and one of them being a breech delivery) and two were delivered via Caesarean – but all four have autism.
Your baby may have been born early or late according to the due date you were given and be a single child or perhaps one of twins. All sorts of theories exist about possible early signs of disability, such as a child being in the breech position (bottom or feet down) pre-delivery, but most breech babies are totally unaffected by any learning disability. Two of my boys were breech – one being the second twin – and two were head down (cephalic delivery), but all four have autism. There are so many variables involved in trying to determine what may or may not cause or indicate autism and many, many theories put up by parents and by professionals.
The chances are that at no time during your pregnancy will anything have been found to indicate any risk of your child developing autism. Your baby will have developed normally in the womb, nothing untoward will be detected on any scans or pre-natal tests, and at birth, any possible complications at birth will be the same, statistically, as for any newborn child.
Your little boy or girl will be cherished by you and loved from birth. He or she will probably start to achieve all the usual early milestones within the normal timescales as other babies, some earlier than average and some later.
Of my four boys, one walked independently at ten months (which is quite early) while another of my boys seemed to ‘cruise’ for ever and wasn’t walking independently until twenty-two months (which is quite late). Both were just within normal limits, however, and gave no indication of anything relevant, although since then both have turned out to have hypermobility (where the joints are over-flexible).
What I am trying to convey is that the diagnosis of autism will come as a huge and devastating shock to you, as to nearly all parents. Maybe there will be a gradual realization that something is not quite right, but having looked after and loved your precious child for a few years, with no inkling of what is to come, the diagnosis will hit very hard. Overnight it seems as though your normal, healthy child has changed into a child with a lifelong disability seemingly from nowhere and for no reason. Suddenly you have no idea what the future holds for you and your child. One day they are fine, and the next they are not.
Some mothers have noted later, looking back sometime after diagnosis, that perhaps their babies were more unsettled than others and were not good sleepers. Such babies may have cried more than some, but other babies too may be unsettled for many reasons and not then go on to develop autism. They may have developed a severe colic, which causes a tiny baby to be very unhappy, yet still there is nothing to really alert you to the fact that something serious might be happening to your child. If you are a first-time mother, you will have no real comparison of your own. Even so, all babies are different and some are easier than others, no matter what you do. So, at the time, you may think your baby is a ‘difficult’ baby – and, actually, they probably are – but at the time, you may not know any different. Everyone’s view of what is difficult to cope with is very subjective and people’s tolerance of difficulty also differs greatly, so unless you are a very experienced carer of babies, you may not have realized at the time that your baby is perhaps more unsettled than most.
My twins were my first-born babies. Looking back, they were incredibly unsettled and I hardly ever got any sleep, but I was so proud to have had twins that I struggled through. I thought that this was just how twins were.
Can Autism be Prevented or Cured?
There is some ongoing research, which is hoping to be able to detect and predict early symptoms in young babies that might warn of the condition earlier. Much of this research is being carried out on the younger siblings of children affected by autism. But currently, there is nothing known absolutely to prevent the development of autism. However, it is agreed that an earlier diagnosis is very much more beneficial for the child as it means you can begin therapies and treatments at the youngest age possible to give your child the very best possible start in life.
The Wide Spectrum of Autism
The hardest part is that no one really knows yet why or how a child develops autism. Are they born with a genetic predisposition to developing autism? Is there one trigger or many triggers and, if so, what are these? There also seem to be many types of autism within the same diagnosis: no one child is exactly the same as another and none has the same symptoms; unlike, for instance, deafness, which can be measured as the level of decibels a child can hear, or visionary problems, which can also be similarly identified and measured. Because of the huge differences in the way in which a child may be affected, the condition is defined as Autistic Spectrum Disorder (ASD), which covers a wide range of ability and disability. This also makes any future prognosis difficult, e.g. predicting how well your child will progress and what you can hope for in the future. The definition of ASD is a very open and seemingly vague one in some ways. It means that children diagnosed on the Autistic Spectrum can be affected at very different levels, ranging from the profoundly autistic child who may not ever develop language or be able to live independently to those children at the higher functioning end of the spectrum, usually labelled as having Asperger’s syndrome. Again, this makes the diagnosis hard to pin down for parents.
When you first hear the term ‘autism’ used about your child, what do you think of? Perhaps the stereotype of an autistic savant such as the character portrayed by Dustin Hoffman in Rainman? Perhaps you may have read popular novels featuring children with Asperger’s syndrome? Perhaps you may already know a child with autism and may think ‘but my child is not like that child’? Of course, we parents are people, too, and inevitably we will jump to conclusions and, sadly, will often assume the worst-case scenario that we can think of. Conversely, you may know someone whose child was thought to have autism but actually the diagnosis turned out to be wrong, so you will hold onto the thought that it also may not be true of your child.
The consultant who told me that my twins had autism also told a neighbour the very same week that her son had autism. Three children in the same road in the same week? It turned out that her son was bilingual and that was the only reason for his language delay, so I clung to the hope that perhaps the consultant had also got it wrong with my boys and that maybe they had something like verbal dyspraxia (see page 69). I spent the next few weeks while we waited for a second opinion trying to convince myself that my beautiful boys had any number of issues, but not autism.
Your reaction may also depend enormously on how the diagnosis is delivered to you. If you have a sensitive paediatrician or other professional, you may at least come away with some hope and ideas and positive thoughts about where to go from here. If your diagnosis is given to you by someone with negative thoughts about autism, you may come back from your consultation devastated and with no proper advice for the future of your child.
The consultant told me that my twins were autistic out of the blue during a hearing test, not a developmental assessment, and compared the condition to vegetable soup saying that ‘if we all had a bowl of vegetable soup, some of us would have more carrots in theirs than others’. He then sent me away saying there was nothing I could do about it and he would see us again in six months!
Comparing such a serious diagnosis to a bowl of soup is fairly unbelievable and to offer no advice or hope in such circumstances is appalling. However, as a parent there is much you can do about it, and it did not take me long to discover that.
Early Signs and Symptoms in Developmental Milestones
The very earliest symptoms of autism may be noticed in a child by experts or by someone with some prior knowledge of the condition from around the age of twenty-four months. Usually it is not very apparent until between eighteen months and two years of age that there may be something developmentally delayed or different about your child. Little things like a child not waving ‘bye, bye’ may be put down to the child being shy or just late in developing. A typically developing child may put up their arms to you to signal that they want to be picked up and use many other non-verbal gestures like these before they start to talk. These little gestures will occur naturally and you will not necessarily be looking for them, they just happen. You probably will not even be aware of these gestures as you will just respond accordingly to your child if they indicate nonverbally that they need something.
Pointing
If your child does not use physical prompts to communicate with you, you will probably not notice their absence or even be aware that they should be doing some of these things. If lots of these little gestures are missing, this may add up to a bigger picture overall, but each on its own may go unnoticed or not be seen as being significant. One quite significant example of non-verbal communication is the act of pointing. A child should start to point at objects that they want or need or maybe just to draw your attention to something they have seen. Perhaps they will point at a dog or a car or something that catches their interest to show it and share it with you – this is called joint attention and is one of the first things a child should begin to do, even before they develop speech. They will point repeatedly at an object that they desire that is out of their reach in order to gain your attention so that you can get it for them. So, pointing with an index finger is an early, very important skill. But again, if your child is your first-born child, then you will not necessarily know what to expect them to be able to do and at what age.
Obvious milestones like rolling over, sitting, crawling and walking are all significant stages of development that everyone readily discusses. Indeed, the age at which a child first ‘performs’ each of these milestones is often a source of pride to the parents, particularly if they think that their child has achieved it earlier than others. In fact, there is not much significance at what age a child reaches a milestone as long as it falls within the quite wide age range for each activity. Less obvious developmental markers such as pointing and waving are not discussed with quite such enthusiasm and may even be performed by a child for a while before the parent actively notices.
At developmental checks, you are asked at what age your child first sat independently or walked unaided. Most parents have a clear memory of when this was and can pinpoint an exact age. When you are asked at what age your child first babbled or pointed, you may be quite vague or unsure about when or if your child babbled at all.
Usually, parents will remember their child’s first word, if they are lucky enough to hear it. For most parents, that word will just come naturally, seemingly effortlessly. For those of us with children with autism, that first word will be hard won and longed for and all the sweeter when it is finally heard. One of my boys’ first words was ‘juice’ (or at least an attempt at that). Hearing the words ‘Mummy’ or ‘Daddy’ are a lot further down the line than for typically developing children whose first words usually include a version of ‘mama’ and ‘dada’.
If you are asked when your child first began to point at things, you may suddenly realize that they may never have pointed at all but, until you were asked, you had not noticed or realized the significance of this. Appropriate eye contact is another function that may be impaired but which you may also have not noticed. A shy child may try to avoid direct eye contact. You may perhaps think your child is so absorbed in other activities that they do not have the time to look up or look at you. Eye contact is quite difficult to quantify or describe and some people are naturally better at it than others. A child with autism may appear to be avoiding eye contact deliberately. But, again, until this is pointed out to you, you may not have noticed it at all.
Speech Delay
Of course, speech is the most obvious red flag that there may be a problem. Speech develops at different ages: often girls speak more fluently than boys at a younger age and first-born children also tend to speak earlier. Youngest children in a large family may not feel the need to use language until quite late as their siblings may be doing all the talking and interpretation for them. In twins, language can be delayed or be acquired in a slightly different way. Children who are brought up bilingual can also begin to talk markedly later than their peers. Thus, there are many variables influencing the age at which a child begins to speak. Despite this, there are ages by which certain targets of language attainment should have been reached. One of the more obvious signs that a child may have more than a straightforward language delay is that not only do they not speak, but they also appear not to understand.
You may first become concerned that perhaps your child cannot hear properly. Perhaps they do not seem to respond to their name when called or when talked about. Typically developing children will often turn when they hear their name spoken, even indirectly, in conversation. They will certainly respond when being called or talked to directly and their name used as a command to gain their attention. A child with autism might respond to their name, but not nearly as often as you would expect. Strangely, a favoured word like ‘chocolate’ may bring a better response than simply calling your child’s name!
It was only when I asked my boys if they would like some chocolate and got no response that I realized that not only did my boys not speak, but they also did not understand language. When I produced a packet of chocolate and showed it to them, their response was, of course, immediate and they became very animated and, clearly, they did want the chocolate.
You may have to put yourself right in front of your child to gain their attention – not because they cannot hear you, but in order to try to get any response from them at all. You may also find it hard to make eye contact with your child and may need to put your face within their range of vision instead of expecting them to look to you.
Often, delayed language is not picked up on until you start to become concerned that all the other children the same age as your child are starting to talk and your child is not. Your child may be strangely silent, or not make much noise at all; they may never have made much sound vocally, or at least nothing resembling the beginnings of speech. They may have babbled as babies, but not developed speech following on from the babbling. Or they may have begun to babble and then seem to have lost the babbling somewhere along the way.
One of my twins made a loud continual humming noise from around the age of two which he didn’t lose for years until he finally replaced it with speech. It wasn’t a form of communication, just a sound that seemed to comfort him or that perhaps he just enjoyed hearing.
Even harder for a parent in some ways is when a child has begun to talk and has the beginnings of speech but then slowly loses all their words and seems to slip into autism. This can happen quite gradually over a period of months until you realize that something is wrong or can happen almost overnight. This pattern occurs in the regressive form of autism and sadly is not uncommon.
Could Speech Delay be due to Problems with Hearing?
So, your child is not talking yet and, to get to the bottom of this, you embark on a round of hearing tests and doctor’s appointments. It is quite difficult to test a young child’s hearing accurately as not only do they need to be able to cooperate with the testing procedure, but they also need to understand what is being asked of them. At the same time, they need to be willing to take part and be able to pay attention for the duration of the tests. Not easy at all. Most babies will have had their hearing tested at birth so you should already know that your child is not profoundly deaf. However, it will be hard to ascertain if they have an actual hearing problem.
Sadly, a hearing problem can often be nothing more than a big red herring at this stage. All four of my boys were diagnosed with glue ear, which took months and months of testing to prove, and then further months for treatment to be carried out in the form of the surgical insertion of grommets. Grommets will not be put in until it can be proven that your child has had a minimum of six months of glue ear – by which stage you have been following the path of hearing loss for nearly a year. You are, quite naturally, under the illusion that once the hearing issues have been rectified your child will then begin to speak. If your child continues not to talk post-operatively or post-treatment, then you start to realize that the hearing issue may not be the only problem your child has – and realize that you have been in effect been delayed by another year before the possibility of autism is suggested.
How Long Will a Diagnosis Take?
The diagnosis of autism can take a very, very long time, yet it is in your child’s best interests to have a diagnosis as early as possible. There is no instant blood test or brain scan that can be carried out to confirm the condition. As yet, there is no genetic test available, although research is underway to try to prove genetic links and predisposition. You may start with taking your child for hearing tests and to see ear, nose and throat surgeons (ENTs), and then progress to seeing speech and language therapists (SLTs), educational psychologists (EPs) and paediatricians. Maybe your health visitor or nursery teacher will be the first person to pick up that your child is having some problems even before you see any of these experts. Each professional may do his or her own observations first, and it may take a while before you are referred to different specialists. All of these referrals and assessments can mean that the road to diagnosis can be a long one. Within the NHS there are, of course, waiting lists and sometimes long delays before you even manage to get an appointment with some specialists.
Identifying the Early Signs of Autism
There is a checklist for autism in toddlers, known as CHAT, which was developed to help identify children who might be at risk of developing social communication disorders. CHAT is usually used at around eighteen months of age, or whenever there is any cause for concern. It is often carried out by health visitors or nursery staff and is intended to highlight children who might need further evaluation. It is not used to diagnose autism, but is a simple way of assessing which children need some follow-up and even perhaps a referral. If there are concerns on testing, the test should be repeated a second time a month or so later, after which the child should be referred to a specialist, often the community paediatrician. At this you will be asked questions about your child. For example:
There will also be observation questions for the person doing the assessment. It is quite a straightforward test to carry out and is basically a tick list. If there are concerns following this basic assessment, then a proper referral should be made as soon as possible.
Criteria for Diagnosing Autism
Diagnosis these days is based on some pioneering research by Lorna Wing and Judith Gould in 1979 and is the basis for the triad of impairments upon which the diagnosis of autism is currently made. For a diagnosis to be made, your child must exhibit one or more symptoms from each of three categories. There is a wide variation in the symptoms that each child exhibits and no child will have exactly the same symptoms as another. The severity of the symptoms also varies enormously across children on the autistic spectrum. Your child may have a severe impairment in one area and only be mildly affected in another, e.g. a child with Asperger’s will usually have normal language development but may suffer from anxiety or have significant problems with social interaction.
The three categories for the diagnosis of autism are:
If you want to read the official list of criteria used by the medical profession, look up the diagnostic criteria for autistic disorder in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM IV), published by the American Psychiatric Association (APA).
Social Impairment
Social impairment can include not responding when being talked to, as illustrated by behaviour such as:
One of the most strongly held beliefs that seems to prevail is that all children with autism show no affection and actively dislike physical contact. It will often be one of the first questions someone may ask you on hearing that your child has autism: does your child dislike physical contact? In fact, many children with autism are more affectionate than others who don’t have it, as children with autism act instinctively without worrying about what other people may think of them.
Social Communication and Language Impairment
Social communication and language impairment can vary greatly in severity. Some children may have no spoken language at all and may appear not to understand any words either. The levels of spoken (expressive) and understood (receptive) language are usually fairly equal in a child with autism. This means that a child with only a few spoken words probably only understands a few words spoken to them unlike, for example, a child who may be selectively mute and may not speak but who understands what is being spoken to them. Babies start to learn language and will cooperate and do things on command before they start to speak, which shows an understanding of language (receptively) before they begin to actually say words, e.g. asking them to clap their hands or get their shoes. A child with autism may have no understanding of language and therefore have no idea of what it is you are asking them to do, but if you physically do the action in front of them, e.g. you clap while you saying ‘clap hands’, then your child may cooperate and perform the same action. Your child will have understood by observing and repeating what they have seen you doing, not by understanding what you have said. Children learn naturally by imitation, but a child with autism may not pay sufficient attention and observation to others and therefore often will not imitate.
Echolalia
Often without any real understanding of what is being said, your child may repeat words spoken to them: this is known as echolalia. If you ask a simple question, they may repeat whatever you say straight back to you. Thus the question ‘Do you want juice?’ comes straight back at you as ‘Do you want juice?’, but if your child has some language ability this can then become complicated by them getting the pronouns mixed up. So, when your child wants some juice and asks you for it, what they may actually say may be ‘You want juice’, as this is what they have heard said to them as opposed to realizing that the pronoun ‘You’ should change to make ‘I want juice’. If you ask your child directly whether they want juice, the correct response would usually be ‘Yes’, but you could still have the words repeated back to you – and, in fact, they may not even want any juice at all! A child may repeat the last word or two of everything you say with no real understanding and, when offered a choice, will usually appear to take the second option as they are repeating the last word they heard. For example, if you ask ‘Do you want a biscuit or a piece of cake?’, they may say ‘cake’ while grabbing the biscuit from you. In this way, language is acquired and used in a very different way by children with autism. Children with no communication difficulties will acquire language almost effortlessly whereas a child with autism finds it very difficult and will often need specialist teaching and intervention to be able to communicate at any level. Speech in a child with autism can also take the form of narrating chunks of language learned from favourite books or films, often known as ‘scripting’. To an outsider this can sound as if your child has language ability but, in fact, this is not an effective form of communication. Your child may not even understand the words they are repeating, but they may like the sound the words make or perhaps the words make your child happy because they are thinking about that favourite part of a film or book. Your child may also talk nonsense jargon, which they think is speech as perhaps speech sounds like nonsense to them.
Does a Lack of Language Mean Low Intelligence?
It is important to emphasize that although your child may not understand language, this does not mean that they have low intelligence. Sadly, many people assume that lacking language does indicate low intelligence.
If you were to move to China tomorrow, would you be able to work/answer the phone/watch a film or read a book in Chinese, whether Mandarin or Cantonese? I know I wouldn’t. I would find it hard to learn much more than my own name. Certainly, I would not be able to function in life in the way I do in the UK. This does not make me unintelligent; it just means I can’t understand the language. It does not diminish from my own understanding of the world, or the intentions and purpose I may have. This is the closest I can come to explaining how my boys function and feel in our world without the communication skills they so badly need.
At the time of diagnosis some children may have no spoken language at all, only sounds that they make and, as such, are termed non-verbal. It is hard to predict at a young age how much language a child may go on to develop as they grow older. Most children do acquire some form of communication eventually, but in more severely affected children, language may be largely substituted for other forms of communication such as sign language/PECs (Picture Exchange Communication System) or even keyboard skills. There are also children who can speak but who do not see the point of talking for talk’s sake. Such children may speak when really necessary, i.e. when asked a direct question that requires an answer, but otherwise they do not feel the need to initiate a conversation.
I spent years desperately wishing that my boys would talk and now that they can, I sometimes find myself wishing they could just stop talking for a few minutes, which seems so ironic. Although my boys have grasped the use of speech, they have yet to learn the social skills in using speech, e.g. waiting until the other person has finished speaking in order to speak or realizing that if all four of them begin talking at the same time, this means that I can’t actually listen to each one and reply all at once!
Some children may speak in a monotone voice, or too loudly or too quietly. They may have strange intonation or pronunciation. They often have their own agenda, which could mean talking endlessly on their ‘chosen’ subject, which may be an obsession with, say, trains or characters from a cartoon. You may try to start a conversation with your child, who may then go off on a totally different tangent that leads back to their chosen topic. Conversation should be a two-way process and, ideally, it should engage both parties having that conversation. A child with autism may appear almost to be having a conversation with themselves.
Rigidity of Thought, Behaviour or Play Known as Social Understanding
Children with autism often display rigidity in their play and thought. Your child may be obsessed with playing with their toy car or train. This is often because they enjoy spinning the wheels or pushing the car (or train) back and forth repetitively. The way in which your child plays with the actual toy may therefore be very rigid as your child may not acknowledge the purpose of the car, i.e. to transport people. The spinning of wheels or watching the train go back and forth over and over again may absorb your child for hours at a time. You may see them lie on the floor and get very close to the object so they are at eye-level with it. This behaviour can be known as ‘stimming’ or self-stimulatory behaviour. The point is that the toy is not used for its intended purpose as a play object or to represent something real in miniature. Some children line up cars or similar small toys in rows and may wish everything to be in a certain order. Your child may carry around an abstract item, like a piece of string, from which they will not be parted even though this item is not a toy or comforter.
When he was about two years old, one of my boys carried around a broken toothbrush holder. It served absolutely no purpose and he didn’t play with it, but he would not let it go. It was his comfort blanket for days.
A toy may be used as an abstract object, so a child might use a small doll to bang in a nail or dip a car into their yoghurt and eat from it. Although some children play appropriately with their toys, it is very common for a child with autism to lack these appropriate play skills.
Some children like to sniff or smell everything. They obviously have a strong sense of smell and this can put them off eating certain foods. They may also refuse to eat something because of its appearance. (Little children can be fussy eaters at the best of times, so you may find your child eating a very limited diet for many reasons.) Your child may also venture up to a stranger and sniff them, which can be very hard to explain. I tried to disguise some fish oil (a good source of Omega 3) by hiding it in mini muffins. After this, one of my sons took to sniffing everything suspiciously before he would eat it! Can’t say I blame him, though, as fish oil can have a pretty disgusting smell.
Rigidity in routine can create huge problems for you as a parent. Your child may insist on a very exacting routine that must be the same every time; if not carried out in the same way each time, this could cause the child great trauma, which may often result in a tantrum. For example, your child may insist on walking a certain route to a familiar destination, e.g. the local playground, and if you try to vary the route your child will refuse to walk and may lose their temper. Similarly, your child may always want to sit in the same place. This may be fine at the family dinner table, but can create problems if your child insists on sitting in the same seat on a bus where someone else is already sat. Your child may have no flexibility in the order in which they do anything and so everyday processes become part of a ritualized and rigid routine, which must be maintained if your child is not to become distressed.
The Long Journey to Diagnosis
Getting an actual diagnosis from a professional can be a very long process. Some local authorities seem reluctant to diagnose.
To a cynical parent like me, this may be because you as a parent may try to get some help from the local authority, which it is obliged to pay for. So, the longer your child remains undiagnosed, the less money the local authority will have to spend on he or she. Like the NHS, the local authorities (LAs) have spending limits, and it does seem in some areas that getting a diagnosis for a child takes longer and is a lot harder to obtain than it should be. Meanwhile, time is ticking away for your child: the earlier you can start therapy and get the appropriate help, the better chance your child has in succeeding in the future.
Private or NHS Diagnosis?
If you are fortunate, you could be referred to a multi-disciplinary team, which may consist of a psychiatrist / speech and language therapist / clinical psychologist / educational psychologist and paediatrician, or a combination of some of these health professionals. In many areas, you may see the community paediatrician only, but you need to be sure that the person giving a diagnosis to your child is a health professional with experience in diagnosing ASD.
Even after my community paediatrician announced out of the blue at a hearing test that both of my twins had probable autism, all I finally received after that visit was an appointment for a formal diagnosis to be carried out in a year’s time by the NHS. As far as the community paediatrician was concerned, there was nothing I could do about my boys’ diagnosis so there was obviously no need for speed! So, of course, I had no option but to seek a private diagnosis as I wasn’t prepared to leave my boys without help for another year.
If you do decide to get a private diagnosis, again be sure that the professional you consult is recognized as an expert in the area of ASD. Meanwhile, be sure to remain on the NHS waiting list as you will still need a formal diagnosis from the NHS in order to access any services being offered. Your private diagnosis may be acknowledged by your LA, but often the LA will not offer services for your child until it has carried out its own formal assessment. Your private diagnosis will get things moving quicker, as once you have a formal diagnosis you can get started with helping your child.
Some private medical insurance companies may be willing to pay for an initial consultation that may lead to a diagnosis and a full report if autism is not a named condition on your policy. You may need to see other specialists to rule out any other conditions, such as epilepsy, or problems with hearing. Private medical insurance does not cover chronic disease and so conditions like autism are not covered. Once your insurer has paid for an initial diagnosis, it is very unlikely to pay for any resulting therapy required by your child.
Private health cover may be willing to pay for some speech and language therapy if your child has needed surgery for grommets for glue ear, for instance, so it is worth asking. If you do not have private cover, then do check first how much a possible diagnosis and report will cost you. It may be relatively expensive, but these will strengthen your child’s case as no one will listen to you until you have a diagnosis from someone, somewhere, to prove that your child does have autism and needs help. If you know that you will have a long wait for your child to be properly diagnosed, then a private diagnosis may be money well spent, if only to get the ball rolling and perhaps speed up other services.
In an ideal world, your child would be seen and diagnosed as soon as a problem becomes obvious but, in reality, the LAs and the NHS like to play a game of ‘let’s wait and see’ in many cases.
The Sub-Categories of Autism: High-Functioning/Low-Functioning
We have seen that there are three main ‘types’ of autism – Asperger’s syndrome, PDD-NOS, and classic autism (page 11). This last category also often gets further divided into sub-categories. Your child may be labelled ‘verbal’, i.e. he or she is able to talk, or ‘non-verbal’, which means that he or she is not making any vocalizations that resemble speech, although few children are truly silent. Your child may also be termed as ‘high-functioning’ or ‘low-functioning’, which can be quite controversial labels. High-functioning implies a more able child with perhaps a higher IQ and better language, whereas low-functioning implies a more severely affected child who is less able to cope in mainstream life. Early on, it is often difficult to place a child in any category at all, and really trying to define where on the autistic spectrum your child appears to be is not really the point. With the right support and help, your child, who may have been non-verbal and seemingly low-functioning at diagnosis at a young age, may then progress to using functional language and begin to understand the world in which they are a part of. At this point, they may be deemed as being high-functioning.
IQ testing
There are many issues around the accuracy of testing a young child’s intelligence quotient (IQ) level when they have very little language, and so, perhaps with some justification, these sub-divisions are not very accurate. IQ tests are not devised for nonverbal children, and so a child with very little language can often receive a low score as they will score badly in the sections requiring language. Your child may be very able in one area while being much less able in another.
As my two boys could not follow instructions or questions, at diagnosis they were considered non-verbal and supposedly low-functioning. But now they are certainly deemed to be high-functioning as they have a wide vocabulary and can function fairly independently.
If you say that your child has high-functioning autism, people may assume that your child has Asperger’s syndrome. In fact, there is a big difference between high-functioning autism and Asperger’s. Asperger’s syndrome is used to describe children who have an IQ of over 70 and who have had little or no delay in acquiring language. It is not, therefore, possible to change a diagnosis from autism to Asperger’s later on, even if your child improves hugely. Why? It is because you cannot remove the fact that your child had a delay in acquiring language. In this case, your child’s label should remain as high-functioning autism.
Try to remember, though, that these labels and diagnoses are solely meant to enable you to get help and support for your child. The label is not necessarily the most essential element, but authorities do require some sort of label in order to be able to place your child and help with their needs – and it is your child’s individual special needs that are what is most important. Just stating that your child has autism is not enough. Your child should not only be labelled as a child with autism, but also as a child with perhaps severe speech and language delay or with behavioural problems or whatever it is that your child has problems with. Whatever problems your child has, therefore, these need to be addressed and appropriate support given. These needs could encompass language, behaviours, academics or social problems, but could also include many other issues. It is important that people do not only look at your child as having a label – or, even worse, as being that label – but as an individual with individual needs. Later on, your child may acquire additional diagnoses, such as attention deficit activity disorder (ADHD) or dyspraxia, which also come under the umbrella of ASD. Some children may also have medical diagnoses not covered by the ASD diagnosis, such as epilepsy.
How Early Can a Child be Diagnosed?
You may have noticed something about your child that has caused you concern and prompted you to ask for some advice in the first instance. Perhaps you have noticed a lack of speech or rigid patterns of behaviour.
I did not notice anything particularly different about my twins when they were little: they were my first-born and I just thought that twins were very hard work. I was also told that they were speech-delayed simply due to them being twins, so I did not see the need to request a referral for my boys to any professional.
Particularly with a first-born child, you may not be aware of anything being wrong or different about your child until perhaps they start to go to nursery and mix more with other children of a similar age. At this point, you or someone else observing your child may begin to make comparisons and notice that your child is possibly delayed or different in some way from other children. Ideally, the referral process and road to diagnosis will be started as early as possible in order for the support to be put in place to ensure that your child gets the best possible chance to do as well as they can.
Again, I cannot stress enough the importance of an early diagnosis so you can begin to help your child as young as possible. It makes me very sad when I meet parents whose children did not start to access help and therapy for many years. Those early years are crucial for our children’s development.
Some of the Professionals Involved in Diagnosis
There are a number of different professionals who may be involved in making the diagnosis for your child. You may already be in touch with a health visitor, or you may be advised to set up a meeting with a health visitor in the first instance. A health visitor is a qualified registered nurse, midwife or sick children’s nurse, or even a psychiatric nurse with a specialist qualification in community health. The health visitor is part of the NHS and they are often closely linked to general practitioners’ practices. Every family with a child under five years old should have a named health visitor. You will probably have met your health visitor at a baby clinic, which you would have attended with your newborn baby. Apart from regularly having your baby’s weight checked, you can consult the health visitor for parenting advice and tips on feeding, weaning, etc. If you are lucky, you will have been offered an eight-month baby check or a two-year-old developmental check. During these checks any potential problems may have been identified, so you may already be in the system and have been referred already to other services. However, as with most non-essential services within the NHS, many health authorities have cut back on the funding for these checks and you may only be referred or be offered a check if you or another professional thinks your child may benefit from an assessment. The health visitor may do a general assessment on your child and talk to you about any concerns you may have, and then may do a CHAT checklist as mentioned earlier (see page 22). This is not a definitive test or diagnosis and is designed only to identify children who may possibly have some form of communication disorder and who would benefit from a formal extensive assessment. Some health authorities additionally have a special needs health visitor who you may be able to consult. They will have a greater knowledge of the issues around having a special needs child and can offer advice on facilities and benefits available in your health authority.
Audiometry or Hearing Tests
Your next point of referral may be a speech and language therapist, particularly if your child is not talking. If this is the case, you should also be referred to a community audiologist at the same time, as your child’s hearing should be checked first. It can be very hard to test the hearing of a child with ASD as they will have difficulty in responding and cooperating with the testing procedure. Even with expensive equipment, there is no definitive test that can assess your child’s hearing levels without the cooperation of your child.
Firstly, your child needs to wear headphones, which may be the first stumbling block if your child refuses to wear the headphones. Ideally, sounds should be transmitted through the earpieces to give a pure sound unmasked by any other background noise. If your child refuses the headphones, an operator can sit behind them with a hand-held machine that emits bleeps at different decibels (or levels of noise). But even if you can get your child to sit still and listen, they then need to be able to press a button or move a toy (or something) to indicate that they have heard each sound. In a sophisticated audiology clinic, there is a silent booth with glass boxes with moving toys inside. These boxes will light up and the toy will move. For example, a toy monkey clapping cymbals to prompt a child to look in the direction of the toy, to see the source of the noise. Even this is not 100 per cent accurate as the child may anticipate a box lighting up and look to the box without waiting to hear the sound. The staff in such centres are often excellent and well used to testing children with ASD, but if your child is unable to sit quietly and do as expected, ultimately the test will be impossible to perform.
The only test that can be done more easily is tympanometry, which measures the vibration of the eardrum (tympanic membrane) and can indicate whether your child has glue ear, which is causing a level of conductive hearing loss. Even this test needs your child to sit still for a few seconds, but they do not have to actively take part, no understanding is needed on their part. If this test does indicate that your child has glue ear, you will be asked to bring them back for a repeat test in two or three months’ time.
Glue ear is a build-up of fluid behind the eardrum, which prevents the eardrum from vibrating in response to sound waves. The presence of fluid in the ear has been likened to listening under water, so all noise is blurred and indistinct. There seems to be a higher correlation of glue ear with children with ASD than in the neurotypical population. If your child does have glue ear, this may explain a degree of language delay and perhaps some behavioural problems. A child with glue ear who does not have autism will still have appropriate eye contact and joint attention. That is to say that they will point at items and try to share their ideas with you and will be able to indicate in non-verbal ways that they need something. A child with both autism and glue ear will be doubly disadvantaged in trying to acquire communication skills, both verbal and non-verbal.
All four of my boys had glue ear, three of them requiring operations under general anaesthetic to insert grommets and drain the fluid. Before we could begin to teach them language, they needed the procedure to be able to hear sounds and language in the first place.
If your child requires medical intervention for glue ear, they will then be referred to an ENT surgeon if repeated hearing tests over six months show glue ear and consistent hearing loss. There are other things you can do to try to resolve the fluid without surgical intervention. Removing dairy from your child’s diet can reduce the level of mucus produced. You can try cranial osteopathy to extend the canal behind the ear drum in which the fluid is found in order to increase the flow. You can also try more alternative treatments such as hopi candles and homeopathy. Because you have to wait six months for referral for surgery, you have plenty of time to try out some of these therapies without causing any delay in treatment.
I have to admit I tried them all for my youngest son, including hopi candles on alternate days for six months. My osteopath even admitted that my son was the first child whose glue ear he had not been able to resolve and so my son had the grommets inserted. Within one week of the operation my son was able to walk as, previously, the fluid had also been affecting his balance and he had only been able to cruise the furniture until that point. As a result, the surgery made a huge difference to my son both in his ability to walk unaided at last and also to hear sounds properly.
Speech and Language Therapists
Whether or not your child has glue ear, or any other form of hearing loss, you should be referred to a SLT if your child has any signs of language delay or disorder. Speech and language therapists do not only advise on the acquisition of spoken language, but also other forms of communication such as non-verbal communication. These may take the form of a sign language such as Makaton or the usage of PECS (Picture Exchange Communication System).
SLTs also advise on children with eating or drinking difficulties. Some children with ASD have a very restricted diet that is self-regulated. This means that a child refuses to eat certain foods and may only choose to eat a very limited range of food. In some cases, this can mean ingesting only fluids or puréed or soft foods as the child may dislike chewing food because of the texture of certain foods, such as meat.
My boys ate a great variety of home-cooked puréed food happily for three years, but when we tried to introduce food that needed chewing, they refused to eat much of it. Their enlarged tonsils also made it hard for them to swallow effectively.
One of the problems that can result from not eating solid foods is that the muscles around the mouth do not get much exercise (from the chewing action of the jaw) and, consequently, are not worked properly. This will further hinder a child’s acquisition of speech and their formation of verbal sounds. If your child is similarly affected, do ask your SLT for help.
An SLT assessment can be part of the process of getting a diagnosis of ASD for your child. The assessment will not be a one-off session, but should be carried out over a period of time so that information can be gathered from parents and other people involved with your child, such as nursery staff. The assessment will include observation of your child’s understanding of spoken and body language (known as ‘receptive language’) and your child’s ability to use spoken and body language (known as ‘expressive language’). In a child with ASD, the level of receptive and expressive language may be at a very similar level to each other so the child will only understand as many words as they can actually say. The child may be able only to understand and speak certain words, or they may have a slightly higher level of understanding than they can speak. For example, you might be able to ask your child to ‘get the ball’ and they will comply, but if you ask them to label the ball and ask them ‘What is that [i.e. the ball] called?’, your child may not be able to reply correctly (by telling you that the object is a ball). Your child may only understand the word ‘ball’ and not the overall question ‘What is it called?’
Some children may have no awareness of language at all and may make little meaningful noise themselves. If a child were deaf and did not have autism, they would respond very differently and be trying to communicate in other ways to convey things to you. Their non-verbal communication would probably be very good and they would be able to interpret body language and have appropriate eye contact. To these children, language is just a jumble of sounds that has no meaning for them.
A child may have a relatively good level of vocabulary, but in a social context they may not use it in a meaningful or appropriate way. Some children talk in a script-like way, repeating learned chunks of phrase. To outsiders, it may appear that the child has highly developed language skills, but it may be that the child is using memorized words that they can form but which they could not expand upon or even use in the correct context.
More able children with good language skills may not respond appropriately to questions and may talk on a theme that interests them regardless of the person they may be talking with. In fact, it may feel like there are two separate conversations going on: one that you are trying to have with a child and a second that the child is having on their own behalf.
An SLT will also observe a child’s play skills, e.g. their pretend or imaginative play, assess whether they have the ability to copy play or to join in with an activity. The assessment may take place at home, in your child’s nursery, or in a speech and language clinic. Your child may be observed playing with certain toys or being asked questions about those toys. The SLT may observe how your child asks or requests for an item they want, perhaps by asking for the object by name, by pointing at the object or by grabbing or snatching at the object. The SLT will also observe whether they look at you or the person with the object first in order to request it. Many children with autism will not look up to the person with the desired object, but will instead reach or grab the item without any eye contact first.
There are formal speech and language tests that may be carried out, although these will probably not be used on very young children. So, a lot depends on a number of factors: the age your child is when they are going through a period of assessment, prediagnosis and the actual standardized tests carried out.
At school age, more formal testing may be carried out and you may be told that your child’s language is within a certain age level. Generally, the assessment will look at all the areas around the development of speech: expressive and receptive language; nonverbal communication; play skills; and social skills.
Educational Psychologists
Your child may also be assessed by an EP. If your child is pre-school age, you may be offered a home visit or the EP might visit your child at nursery, if this is appropriate.
If your child is school age, there is usually an EP attached to your child’s school, and a referral may be made by your child’s school for an assessment. An EP no longer has to have a teaching degree, although many do have this additional qualification. They do have a postgraduate specialist degree in educational psychology, which is undertaken after an initial psychology degree.
The assessment will include observation of your child, as well as a great deal of information from a parent or carer about your child, so that an opinion is made not just on a single observation. Your child may behave very differently on different days or when with unknown people or in new situations and places. It is, therefore, of great importance to have your input and knowledge of how your child behaves. Your child will be observed while playing and some toys may be provided to see how your child plays with them, e.g. to see if your child plays appropriately with small characters (such as putting dolls into a doll’s house and then acting out stories with the dolls). Perhaps, instead, your child will use the characters as objects for building with and not treat them as dolls but as inanimate objects. This may indicate whether or not they are not playing with the toys appropriately. A lack of imaginative play and a tendency to play in a limited way is very common in children with autism.
An EP will try to assess your child’s cognitive (intelligence) skills at the same time. This may be done with the use of puzzles or tasks using blocks and shapes. It is possible to approximately assess a child’s cognitive ability even when they have no understanding of language, although the results may not be totally accurate. The tasks may be done a few times and timed in order to calculate a level of understanding. These may involve copying a task or trying to do something independently, such as completing a puzzle or sorting objects. The EP will also assess your child’s verbal and non-verbal communication and use of language. For example, does your child point at objects? How appropriate is their use of language and is it being used in the right context?
Behaviour is a very important indication of ASD as children with autism tend to display some or several of the behaviours associated with this disorder. For example, your child may be very rigid in the way that they go about certain tasks or they may insist you do things in a rigid way too. Your child may have rituals surrounding certain everyday tasks, such as brushing teeth or going to bed. If these rituals are broken and cannot be adhered to, your child may experience meltdown and temper tantrums. Commonly, children may line up objects like toy cars, or order toys into colours rather than playing with them. They may have obsessions with certain things such as water. A child may flap their hands or jump and up down when excited. There are many different behaviours and it is important that you are able to tell the EP all the behaviours that your child exhibits as these may not all be observed during one session or assessment. The EP will also need to know how long your child can concentrate on a task, or even how long they can concentrate when doing something of their own choosing.
Self-help skills are another area of child development that can indicate if your child has a problem. A developmental delay in feeding or dressing oneself may be identified. Some problems such as an inability to do up buttons at an appropriate age may be due to motor issues, which could mean that your child has a level of dyspraxia. A cognitive delay may also cause poor self-help skills.
An older child may be assessed using the British Ability Scores (BAS) tables.
Paediatricians and Developmental Testing
You will also see a paediatrician (children’s doctor) who specializes in the area of child neurological development. This visit will be held at a neurodevelopmental clinic. In order to see this type of specialist you will need to be referred by another professional, e.g. your health visitor or GP, who has concerns about your child’s development. There may be a long waiting list for these appointments, which can be very frustrating.
The paediatrician will take a family and birth history of your child. They will also ask about any medical problems your child has had in the past or is suffering from now. Your child’s developmental history will be asked for, so it is useful if you can jot this down and also take with you to the appointment all the dates and ages at which your child achieved certain milestones (for example, the age at which they first smiled, started to babble, to roll over, to sit up unaided, to crawl, to cruise the furniture, and to walk unaided).
The paediatrician may carry out a Ruth Griffiths Mental Developmental test. This scores a developmental age for certain areas. The areas covered are:
All these areas are given an age score, which is compared to your child’s actual age. Your child may be age-appropriate in some areas and delayed in others; they may even show unusual skill and ability in one area. Finally, your child will be physically examined and have their height, weight and head circumference measured and rated on a centile chart, which compares your child with other children of the same age. If there are any physical characteristics noted, your child may need to have some further tests such as a genetic test for Fragile X (see page 67).
You may see all of these professionals or you may be asked to attend a clinic that is multi-disciplinary, which means that more than one specialist may observe your child at the same time in order to be able to discuss their findings. This service should all be provided by your health authority, but you may be referred out of the area if there is a specialist clinic better able to meet you and your child’s needs. The process can be lengthy and you may decide at any point to see any of these specialists privately in order to speed up the process and obtain a written and proven diagnosis for your child. If you do this, it is very important to continue to see all the people you are asked to see under the NHS. If you opt out of the initial assessments offered, you may find it very hard to stay in the system and later obtain the relevant services and support, such as speech therapy, that your child may require. You will also need to stay within the educational and health service because at a later stage you may need to seek an Education and Health Care Plan (EHCP) for your child. If you do see both private and state-funded experts, you should inform them at your appointments that you have done so as some tests can only be carried out at certain time intervals, e.g. a test such as the BAS should not be repeated in the space of a year.
How Long Does it Take to for the Assessments to be Completed?
All of this testing and assessment process can be very draining and take a long period of time. You may be desperate to get on and get started with helping your child as the process goes on. Unfortunately, if you are using state-funded services (such as speech and language therapy) there may be a delay in actually getting the help your child needs. You will get to a stage where you just want to know what, if anything, is wrong with your child and demand some firm answers. The professionals may want to consult further with each other and compare notes on your child before giving you a definite diagnosis. After all, you would not want a lifelong diagnosis applied to your child if it were not true, would you? Having said that, it is rare for a child to be mis-diagnosed with autism. In very able children with Asperger’s, the diagnosis may be quite hard to ascertain as other psychological conditions may have to be taken into consideration and ruled out. Your child may have problems socially or have high anxiety levels, but these could also be due to other circumstances or disorders. A child with severely delayed language who has no hearing problems and who has other issues will be more obvious to diagnose. There may also be differential diagnosis in a non-speaking child. For example, a child may be selectively mute, i.e. they are choosing not to speak for some reason, but their level of understanding of language will be very different from that of a child with a form of ASD.
Try to remain positive while all this is going on. Do not look too far into the future, or try to second guess what is wrong with your child. If it seems likely that a diagnosis of autism will be given to your child, then you may want to start to look at what is available in terms of support and education. You can apply for Disability Living Allowance (DLA) pre-diagnosis as this allowance is based on your child’s needs and not on a diagnosis. In the same way, you should push to get speech therapy started if your child has language delay and you do not need to wait for a diagnosis for this, either.
Your child may need help at nursery, perhaps in the form of one-to-one assistance and you do not need a formal diagnosis to obtain this type of help. The head of the nursery should be able to apply for this extra help on your child’s behalf while you are waiting for a possible diagnosis. You may wish to start the EHCP process at this stage, too.