THERAPIES AND EDUCATION
Which Therapy?
SO WHERE DO YOU begin? How do you choose a therapy? Does it choose you, perhaps? By which I mean you may be offered a therapy of some kind by your local authority (LA) or other agency, and you will probably accept this therapy as, hopefully, it will be offered free of charge. You will also hear of a huge variety of possible therapies from numerous sources, such as other families or via the internet.
There will be so many options and different paths that you may choose to go down with your child. No pathway is set in stone and if something does not work for you, you can always stop and try something new. Some therapies, of course, need time to show any results, so the hard part may be trying to work out how long to stick with a therapy before changing or adding another. Each therapist will believe that the therapy they are offering is the best one possible for your child. Other parents may rave about a particular therapy and how much it helped their child; even so, it may not be the right one for you and your child.
One of the difficulties in choosing between potential therapies is that there does appear to be a huge industry now offering a wide variety of therapies and treatments. Some are clearly more mainstream and are widely accepted. Speech therapy, for example, has a proven track record of being beneficial to all children with a diagnosis of ASD. Speech therapy is not only offered to children with severe language delay, but also to children with Asperger’s syndrome who may have normal language acquisition, but who can still benefit from speech therapy to help them learn important social cues and behaviour around speech and conversation.
There are many, many other newer therapies as yet perhaps scientifically unproven, but research may be in progress. Your choice will depend on how you feel about the more alternative therapies on offer and whether you believe they will benefit your child. Some parents become so desperate that they will try anything if a cure is promised. Others will surprise themselves by choosing a therapy that they would never have thought they would use, such as acupuncture (the stimulation of specific points on the body with fine needles). Sadly, there are people who prey on desperate parents and who may peddle so-called ‘miracle cures’ that may be expensive. To avoid this, you must be very careful when choosing any therapy, so ask advice from others and thoroughly check any claims first.
If we waited for all the potential therapies to be tried and tested and have a proven track record, our children would be grown up before many of these therapies got off the ground and were officially recognized. The research has to start somewhere and while you may not wish your child to be used as a guinea pig, if your child drastically improved as a result of a particular treatment you would be so glad that you did not wait for that therapy to be proven. Of course, you need to consider first whether the treatment could do any harm to your child, but very often it is more the case that your money has been wasted on a therapy that does not produce obvious results rather than it has done your child any lasting damage. A certain treatment may only produce a small gain where a different therapy may have more obvious results, but often you need to do many therapies in tandem that all work together.
So where do you start?
If money were no object and the LA or health authorities were willing to pay for any therapy that your child needed or could potentially benefit from, then that would make some of the decision-making much easier. Like most people, you will probably have a limited budget that you can afford to spend on helping your child. It is hard to know that there may be something that could really increase your child’s potential or quality of life, but you cannot afford it.
In this case, first make sure that you take advantage of every possible therapy being offered for your child by your LA. You do not have to take up every therapy being offered. Indeed, you may well find yourself fighting your LA not to take up an educational provision offered to your child but want the LA to fund an alternative provision you prefer. Before you pay for any therapy yourself, you need to know what you are entitled to and what you might be entitled to with a bit of persuasion or a full-blown fight at tribunal. Unfortunately, there is no national policy on exactly what you might be able to get funding for. Each authority has its own special needs’ educational budget and it has the power to spend that budget in the way it chooses. Some areas will have their own schools, which they maintain, and others will fund independent specialist schools, which may fall outside the area. You may be lucky enough to live in a more generous area, or you may live in an area with a smaller budget and known for trying to keep its costs low. As in health matters, special needs can be a postcode lottery. Some families have been known to move into a more sympathetic area, but once your child has been diagnosed you will want to get some support as soon as possible and applying for an EHCP or other educational help can be a lengthy process. If you decide to move, your child may end up waiting even longer just to begin the process while you buy and sell houses and perhaps have to re-arrange schools for your other children. Once you actually have an agreement for your child’s education, it should be transferrable to another area. The reality is that this may not always be the case and the new area may try to amend or change the agreement.
Autism can seem like a parallel world in some ways in which your child’s experiences and education may mirror the world of the neurotypical child, but not always be a complete part of it. Their path may intersect at some points with neurotypical children and at other times go along a totally different route. Our children will all grow up to become adults and at the back of your mind when choosing a therapy or making a choice about your child’s education you should sometimes remind yourself about what knowledge or experience your child will need in order to be able to live alongside other adults in a normally functioning society. If your child is being taught maths, for example, you need to stop and think sometimes about how what they are being taught can translate to the real world. Our children with ASD need to be able to use money to buy items in shops, maybe manage a bank account and their own weekly budget. They may not necessarily need to know equations. A GCSE in maths might not be the best use of their time spent in a maths class, although it is gratifying to think that your child is able enough to take an exam at this level. Even though your child may still be very young, you should strive for them to reach their absolute potential while still retaining the thought of how their abilities will aid them in their future lives. Like all parents, your most important aim is for your child’s happiness, both now and in the future. You do not know what your child’s potential may be, so your aim is to do as much as you can to ensure that your child has the best future possible.
Without therapies – many of which we paid for by ourselves – I do not know or really wish to think about how my boys might have developed. I know that certainly they would not be anywhere near as able to function independently as they are now without having had the benefit of all those years of support and therapy. This makes me feel very bad for those parents unable to fund therapies themselves for whatever reason.
Therapies that Should be Offered by Your Local Authority or the NHS
There are therapies to which you and your child are entitled. These include speech therapy, OT, additional hours of one-to-one support in an educational setting or a place in a specialist school. In some cases, such as if you are running a home-based Applied Behavioural Analysis (ABA) programme or another home-based therapy, your home may count as an educational setting. If your child attends a special needs school or nursery, other therapies such as music, art or drama may be offered within the setting. If your child attends a mainstream school, some therapies, such as music therapy, will probably have to be self-funded. You may also be offered small group therapy courses for speech and OT in your area, but you should be able to get individual one-to-one sessions additionally if your child requires them.
EarlyBird Course
Most local authorities offer a course for newly diagnosed children and their families known as the EarlyBird course. This short course offers parents some support in recognizing and dealing with their child’s behaviour as well as some strategies for helping them to start the process of learning about autism and what it means for their child and family. It is usually offered to pre-school children soon after diagnosis and runs for a few months and should be offered free of charge. It is not an ongoing therapy, but more something to get you started and focused if you are unsure of what to do next and need some support in the early stages. For some parents, it can be empowering and they are grateful to have something offered without a great deal of organizing involved. In other words, you do not have to do anything except turn up. For other parents, the course may be too basic because they have already started investigating different therapies and know what path they currently want to take.
If your child is very young, you may be offered help from the Portage team. Portage is a home-based educational service for preschool children with learning difficulties or additional needs. You will receive weekly or fortnightly visits from a trained Portage worker. The main emphasis on this service is that the parents are the main carers and should be very much involved in their child’s care. Portage can comprise of many different areas of help, such as mobility, feeding and play.
Speech and Language Therapy
If your child is pre-verbal or non-verbal at the time of diagnosis, you will need to find a way to communicate effectively with your child. You will certainly be offered speech therapy by your local health authority. This is usually allocated in a package of visits, perhaps an hour a week for a set period of time. The idea is that the speech and language therapist (SLT) shows you how to do the speech therapy with your child. They may work intensively with your child during the specified hour, but one hour a week is nowhere near enough therapy required for a child with communication difficulties. If you have relatives, or even friends, who can offer the time and the commitment, then you could ask the speech therapist if these helpers could sit in on a session so that they can also learn how to help increase communication with your child. Initially, your child may need to be taught eye contact before speech. This may involve playing games where your child is encouraged and rewarded for looking at someone before being given an item they desire. As strategies like this need to be reinforced all the time, it is vital that anyone looking after your child is aware of what you are trying to teach and that your child has 100 per cent consistency from everyone. In reality, that means that if you are trying to promote eye contact, your child has to be encouraged to look at the person they want something from at every opportunity. If your child were only encouraged to do this for the one hour a week with the SLT, the chances are that your child would take a very long time to grasp the concept, if at all. By involving everyone around your child in their therapy, your child will learn concepts much more quickly.
Even if your child has some speech, they will require speech therapy as all children on the autistic spectrum have social communication problems. It may be that your child appears to have normal speech, but has difficulties in reading body language and so misinterprets what someone is trying to say to them. They may also have problems in understanding facial expressions. How people use their bodies to express themselves in addition to speech is all part of normal communication. Some children may take speech too literally and interpret what has been said absolutely. They may not be able to grasp subtleties of speech and the ability to tell a ‘white lie’. Children with autism can be brutally honest in the way that usually only very young children are, such as asking someone why they are fat or remarking on other physical attributes.
One of my boys once asked a girl I was interviewing when she was having her baby. She wasn’t pregnant. It’s a common error, but one that most people have learned not to ask if there is any doubt.
Children with autism may have problems understanding idioms such as ‘It’s raining cats and dogs’ because they take everything literally. Even when you explain what these expressions mean, they may still ask why you said it if it was not true, or find it quite bizarre to use an expression that obviously is not correct.
It is very common that a child will talk on their own agenda, which means talking about what they want to talk about, often at great length. This may be on a totally unrelated topic to the question they have been asked, so having a joint conversation can be difficult. It only flows at all if the other person they are ‘chatting’ to is able to redirect the child, or correct them and perhaps change the subject. Without the ability to share and contribute to a normal conversation, a child with autism may be isolated and find it difficult to make friends. Another example of speech therapy in this situation could be the use of turn-taking games. A conversation should involve two or more people, each taking it in turns to speak, so playing turn-taking games is a skill that is a precursor to speech and having a conversation.
Sunday evening dinner can be quite bizarre in our house with four children all talking at once on their own agenda about whatever they want to talk about and not listening to anyone else. Apart from the noise levels, it is even harder when each of them thinks they are having a conversation with you and you are expected to answer and keep up with four different ongoing subjects! We try to introduce a topic to at least keep the children on the same subject, although often they are so eager to add to the conversation that they talk over each other.
Alternatives to Spoken Language
Sign Language
If your child does not understand language being spoken (known as receptive language) or have any verbal language themselves (known as expressive language), they may need the use of a different form of communication. This may be a form of sign language, often Makaton, which is designed to support speech. It is used alongside spoken language in spoken word order so that when you use a sign you also say the word as you would normally. A child who cannot communicate their needs will become enormously frustrated, resulting in many of the tantrums and behaviours exhibited by children with autism. Single signs can be taught one at a time, usually for things a child may commonly want, such as food items or a drink. As the child learns to speak, the signs will be dropped naturally. There is an official association for Makaton, which should be able to provide with you with further information. You should be able to attend an introductory course run for parents or professionals working with children with special needs. These courses are often run by independent charities. There should also be higher level courses once you know the basic signs. Some special needs schools also use Makaton, so one advantage can be that if you teach your child to use these signs at home, they will then be able to use them with other people who care for them. It is therefore better that you use a system that is widely known than make up your own signs, which will be specific only to you and your child.
Also, look out for children’s television programmes that teach and use signing and are also watched by mainstream children. There is a group called Singing Hands who sing and sign children’s songs. Makaton will not prevent your child learning to talk as spoken words are always used at the same time as the sign is made so there is a very clear association. If your child has very poor eye contact, some signs can be harder to teach as they require your child to look at you. If the sign can be made in front of your child’s vision, such as using your hands to make a sign like the symbol for ‘drive’, then this makes it a bit easier. It can also be hard to teach signs if you have a child who is constantly moving and has poor attention skills. However, signing has been proven to be one of the most successful ways to encourage spoken language, so do not give up too easily or quickly if it seems an impossible task to teach your child to sign. As with many therapies, repetition and the amount of time and effort you or others put in does pay off!
Picture Exchange Communication System (PECS)
Although signs can replicate language to a high level, it is often easier to teach a child with autism to communicate their needs at a basic level using the Picture Exchange Communication System (usually known as PECS). This is another form of non-verbal communication that can be used to substitute speech. This is a very simple form of communication as it is very visual and easy to use. Most children with ASD tend to be visual learners and may not understand spoken language easily, but they will be able to recognize pictures.
The easiest way to start this system is to have photos of favourite items rather than symbolic pictures. For example, take a photo of your child’s own cup with a drink in it. When your child wants a drink, they give you the photo of their cup containing the drink and you hand them their cup instantly, hence an exchange. You might start with just a few pictures until your child gets used to this system.
Because photos are an exact replica of what your child may want, e.g. a specific type of biscuit or a favourite DVD to watch, the idea can be grasped much more simply as an exact exchange. There is no room for error or misinterpretation. You can put a small collection of photos into a box and let your child select the item they want you to give them. Of course, if you remove the photo of chocolate and that is what your child wants, then you might still set off a tantrum! So to begin with, perhaps just stick with photos of items you do want your child to ask for so that you will not have to disappoint them. Using PECS is very cheap to set up as you can download pictures or symbols off the internet or take your own photos of chosen items.
There are standardized cards that are used in PECS, but it may be easier to start off with your own laminated photos of objects, including drinks and favourite toys. The system can then be expanded to almost anything else that you or your child may need to communicate. For example, you might have a sign for singing, but then also have other pictures to represent different nursery rhymes or songs so that your child can give you a certain card in exchange for the song they want you to sing. The cards can be used to teach concepts and are often used in visual timetables. A visual timetable will be a large board divided into different parts of the day and visual symbols are placed in time order so that the child knows what is happening next or later on in the day. Picture cards can also be used in conjunction with each other, e.g. your child may request a sandwich using one card and then specify a filling such as cheese with a second card. They may also request to play a game with a certain person and so require the use of two cards or pictures to communicate this. An example of the everyday use of visual support in mainstream life is that sometimes children’s menus will have photos of food for very young children to choose from and, of course, food packaging often entices us to look at it by using visuals to indicate what is inside.
In schools and nurseries, the cards used will probably be symbolic drawings or even simple black and white line drawings so that a picture of a cup can be used for a variety of drinks. Once your child has grasped the concept of a picture being a substitute for an actual item, they should be able to move on to more generalized pictures. The other advantage of a picture system is that if your child gives you a picture or photo of something they want, then you or someone else looking after them has no cause for error. If your child uses signs, you might be able to interpret what they are trying to tell you, but someone who does not know your child so well may not read the sign correctly.
You may find you use a combination of methods to aid communication and speech. It is hard to predict at a very young age which children will acquire a good level of speech in the future or which method will be the most successful for your child, so you may need to try various methods.
You will find these methods can help to reduce frustration enormously in a non-verbal child who is unable to ask for something they want or need.
Although my boys had hearing problems, when they were diagnosed the paediatrician explained that there is a very obvious difference between a child who is deaf and one who is autistic, even though both are unable to speak. A child who is deaf will try to tell you what they want by visual means, e.g. pointing, using gestures or perhaps even miming or acting out the action. In contrast, a child with autism will be unable to communicate verbally or non-verbally and very often does not point or have another way to indicate their needs. In this case, you need to teach them a method of non-verbal communication in the time before they (hopefully) start to talk.
Occupational Therapy
This form of therapy should be offered by your local health authority. Your child may be assessed by an OT when undertaking the process of diagnosis for ASD. However, if they have not been seen pre-diagnosis, they should still have an OT assessment and this may form part of the process you may go through at a later stage when choosing the education your child requires. Your child may be seen in a clinic or at school or nursery. In a very young child, the visits may be at home.
The definition of occupational therapy is to develop or maintain daily living skills for any child with a physical, mental or developmental condition. Under the umbrella term of ASD, a child may need help with any or all three of these categories. Autism is a developmental disorder that can cause serious anxiety and other aspects of a mental disorder. Children may also exhibit physical problems such as a delay in gross or fine motor skills. Autism is often viewed as just being a social communication disorder but, in fact, there are many, many other problems and issues which children with autism face, including medical, physical and psychological ones. This is the often misunderstood part of autism, which even health professionals may not fully acknowledge. Agencies offering services want to put autism firmly into the learning difficulties bracket so that the only service offered will be education. A child should be cared for within a multi-disciplinary team that looks after all aspects of the child’s life, but in many parts of the country this approach is sadly lacking.
An OT should be able to adapt your child’s environment if necessary or modify skills in order to maximize your child’s independent functioning in everyday life. This may be by adapting a task to make it easier, such as using Velcro fastenings on a coat instead of buttons. It may also mean breaking down a skill into smaller steps that can be practised individually and increased over time, rather like starting with two- and three-piece jigsaws or puzzles that fit together, then progressing to puzzles with more pieces as each step is achieved. Sometimes, physical help may be needed in the form of perhaps a pencil with a grip attached or a rubber base to prevent a plate slipping. The aim is to increase independence with everyday living skills. A child with autism may have problems with fine motor skills and these problems may prevent them from holding a pencil or pen correctly and make writing difficult. They may also have problems cutting using scissors or doing up zips or buttons. Learning how to use cutlery is a basic skill that needs to be mastered in a society where most food is presented uncut in adult life. If your child eats with their hands they will not suffer malnourishment, but even to eat jelly or yoghurt they need to be able to manipulate a spoon to their mouths.
As older children, although my boys now eat a great variety of food, they still have problems with cutting up meat, and I often have to help them. Fortunately, they are still unaware that this could be viewed as them being ‘different’, but for a child who is more socially aware, this could cause anxiety or embarrassment in public. My boys also appear to have poor table manners because of the methods they sometimes use to eat their food.
Some children have gross motor issues: they may have been delayed in reaching developmental milestones such as sitting, crawling or walking. It is quite common in children with ASD that they have a degree of hypotonia (low muscle tone). This causes them to appear floppy at times. They may also be ‘double jointed’, which is an expression used to describe very loose or flexible joints known as joint hypermobility. So your child may have hypermobility caused by hypotonia. You may notice your child sitting in a ‘W’ position on the floor, basically sitting on their bottom with legs flat on the ground, knees in front and legs splayed to the sides. This should be corrected where possible. Children with hypotonia also find swimming harder as their back muscles may have poor tone, which leads to a weakness in core body strength. As a result, they cannot keep their backs straight and legs level with the water, and they may swim with their legs hanging down in an almost upright position. An OT should be able to offer a series of exercises to help strengthen certain muscles. The exercises may involve the use of large inflatable balls or other equipment. To strengthen back muscles, your child may perhaps be encouraged to play ‘wheelbarrows’, where you hold their legs and they walk along the floor on their hands.
The other area in which an OT will be of great importance to your child is in dealing with sensory issues. Children with ASD can be sensory seeking or sensory avoiding. Many of the behaviours your child has may be due to sensory processing problems or sensory issues (see Chapter 4). An OT may be able to devise a programme to reduce sensory stimulation, e.g. with brushing the skin lightly so that over time your child’s skin becomes more accustomed to touch or pressure, and desensitizes. Some children need extrasensory stimulation to calm them down, perhaps in the form of deep pressure such as being wrapped tightly in a blanket or quilt and being hugged – quite a nice activity to do with your child! You may get advice on clothing such as sensory vests that weight your child down and help them to feel more grounded and safe. Some children like to be swung rhythmically, either in a swing or, again, wrapped in a blanket. A programme of regular sensory tasks may be advised, e.g. giving your child a rubber strap to pull hard against at regular intervals. This can help enormously with an older child at school who is having trouble sitting still and it can help them to cut down on fidgeting or moving around restlessly. Sometimes a child will be given a small object or toy to hold or squeeze during lessons so that they can pay attention to what is being taught without being overly distracted by the need to find something to fiddle with.
It may be that your child needs to do some exercise at regular intervals, perhaps in the form of jumping, running or stretching throughout the day. Boys in particular benefit from regular physical exercise even if they have no special needs at all. A child who is unable to sit still may be helped by the use of a sensory cushion to sit on that stimulates them and prevents them from having to move around in order to gain the sensory stimulation they need. An OT may visit your child at home to advise on certain exercises and things you can do when at home to aid your child. OTs are often involved in problems at school, such as with poor attention skills due to sensory issues. They will also be able to help with fine motor skills, which may be affecting a child’s handwriting, or self-dressing skills, which can also be a problem as children need to dress and undress at regular intervals during the school day.
Other Therapies
There is a huge range of other therapies on offer, many of which you will have to pay for yourself or try to seek funding for.
The difficult part is choosing the right therapy for your child from such an extensive range. Even if you had sufficient money to be able to afford any therapy you wanted, you would still have to research and choose which ones to use. Some therapies can be carried out in conjunction with each other, e.g. an educational programme alongside biomedical intervention. You may be able to set a few therapies in place at the same time, but you need to be wary of overloading your child with demands and information. Life can be stressful for a child with autism and you may need to take it gently and introduce things at a slow pace. There is no miracle cure and certainly no quick fix. Many parents work tirelessly for years to enhance their children’s quality of life and many are very successful, but it takes time and physical and mental effort to do so. Occasionally, you will hear of children who have ‘recovered’. This is a term used for a child who is seemingly ‘cured’ of their autism. But be wary of anyone trying to sell you a system or therapy promising recovery. It is debatable whether recovery is truly possible. Could it be the case that the child who is now ‘recovered’ was misdiagnosed, or mislabelled at a young age? Could the child have learned to hide or mask any outward signs that may indicate they have a diagnosis of autism?
Different children do well with different therapies and sometimes it is simply a case of trying out something to learn whether or not it will be effective for your child.
Behavioural Therapies
Applied Behavioural Analysis (ABA)
ABA is the most well-known and researched behavioural therapy. This is the umbrella term and is used to cover programmes such as Lovaas, Verbal Behaviour (VB) and Natural Environment Training (NET), which are all different types of ABA.
ABA originated in the USA and has been used in the UK for the past twenty years or more. ABA is based on Skinner’s findings that the consequence of behaviour affects the future happening of the behaviour. This is in contrast to Pavlov, who identified conditioned responses that become reflex actions. The earlier programmes were also called behaviour modification. The science of behaviour covers the basic principles of behaviours and the applied science is known as ABA when teaching is put into place to teach or modify behaviours.
The originator of ABA programmes in the 1960s was Ivar Lovaas. The very early programmes advocated the use of aversives (i.e. causing the avoidance of an item, situation or behaviour by using an unpleasant or punishing stimulus). This would mean that a child would be punished in some way for doing something the teacher wanted to stop them from doing. In recent years, this use of aversives has been amended and excluded, but ABA programmes are still looked upon by many as being detrimental to children because of this past history.
Although there is now documented research to prove that early intervention in the form of an ABA programme is the most effective therapy, there is still reluctance on behalf of many local authorities (LAs) to fund this therapy without a big battle, usually ending up in tribunal. It is expensive to run an ABA programme and some LAs do not want to pay for it. If a longer term view were applied – one that recognized that most children who have had ABA therapy have improved greatly – then perhaps funding would be more readily available. Unfortunately, the education budget does not consider the social services budget of a child in maturity who will require care as an adult. In fact, the long-term care costs of a child who has had the benefit of a well-run ABA programme may well be reduced as a result of that child’s improvement, and this should more than cover the cost of the original therapy. However, this is not currently considered, so if you are thinking about ABA therapy for your child, you need to be well prepared with money, determination and energy. You may get no support or help from your LA to set up and run a programme. Indeed, be prepared for hindrance rather than assistance. There are a few ABA schools in existence, but you will probably need to fight for funding for a place at one of these as nearly all such schools are independently run, not by the authorities. Ideally, a programme should be set up and started at as early an age as possible, or soon after diagnosis. A programme of shorter hours can be commenced from the age of two upwards. The younger you start a programme, the more successful it is likely to be. Most programmes are started with pre-school children and it is known as an early intervention, but it usually continues throughout primary school and sometimes into secondary school, too. The majority of programmes, though, are with very young children and are mainly home-based.
An ABA programme is usually run by a consultant who should have the relevant degrees and qualifications in behavioural therapy (usually a psychology qualification plus a further qualification in ABA). There are many consultants to choose from and it is important that you pick someone you feel comfortable with, so talk with some other parents first to get references and recommendations. You can run a programme through a provider, who will send to you a consultant and perhaps a supervisor on a regular basis and help recruit and train tutors. Although this takes away some of the administrative work, you are paying for this service and an ABA programme is expensive to run without additional overheads. If you choose to run a programme independently, there are a great many consultants who work in similar ways but who may offer a slightly different service, such as more regular workshops or support beyond these workshops if you have problems at other times. A consultant will usually visit and run a workshop for a day every few months.
A programme supervisor may visit every two or three weeks depending on how often you need them, which may be dependent on how quickly your child progresses and how often the programme needs amending and moving on to the next stage. Owing to financial costs, some families choose to have just one level of supervision and may find a more experienced supervisor or junior consultant to manage their programme and have perhaps a monthly meeting. The day-to-day programme is carried out by trained tutors who work on a one-to-one basis with your child. This is the beauty of the programme and why it is so successful. The programme is tailored exactly to each individual child and moves at the pace of that child. This is also the reason why the programme is expensive to run as you have to pay for your child’s one-to-one tutoring plus their supervision plus regular team meetings (which everyone working with the child will need to attend).
An ABA programme usually runs for approximately 30–35 hours a week. This seems to be a lot of hours, but you must consider that whereas a neurologically typical child will learn from their surroundings every hour they are awake, a your child with ASD may learn only when you are actively teaching them. Conversely, it has been proven that if you try to do too many hours (over forty hours a week), a child’s learning ability will diminish, probably as a result of overload. There is a fine balance between giving your child the maximum hours to benefit them and overdoing it so that they cannot absorb what you are teaching. Due to lack of funding, sometimes parents do opt for fewer hours per week.
A good, well-run programme should be about your child enjoying the sessions and looking forward to their tutors arriving. All parents need to be committed to being actively involved in their child’s programme. Sometimes parents themselves take on the role of tutor and run their own sessions, but many choose not to blur the boundaries between being a parent and being a tutor. If your child has severe behavioural issues, it can be hard to remain impartial and not get emotionally involved when your child has a meltdown. You have to live with your child for twenty-four hours a day; a tutor comes for a limited amount of time and can walk away at the end of a session. Of course, you need to know exactly what the tutors are doing within their sessions and what behaviours they are working on so that you can maintain the programme between sessions. Any approach taken needs to be 100 per cent consistent so that both you and your child’s tutors react in the same way to any behaviour. You will also need to know what words your child is being taught so that you too can find ways to encourage those words, although you may not do it as intensively as a tutor would. For example, if your child is being taught two colours, red and blue, the tutor would introduce those colours in as many situations and uses as possible. They might play with red and blue Lego bricks, draw with a red or blue pencil, go outside and spot red and blue cars. You need to know that those are the two colours currently being taught so you too can add them in where possible.
An ABA programme consists of many different aspects. It teaches communication skills, whether verbal in the form of spoken speech or non-verbal in the form of signing or the use of PECS. You may also have an SLT within your team to offer regular input and advice. Speech may be taught in very specific ways. Language is broken down initially into very small parts so that the first words are usually single items that a child strongly desires, e.g. a biscuit. Once enough single words have been acquired, language can be expanded to two words such as ‘want biscuit’ and then finally the three words ‘I want biscuit’. The words taught should be those that really motivate a child to want to speak, whether that means food or favourite toys or anything else.
Much of the emphasis of an ABA programme is on reinforcement, often in the form of rewards. A child will not be motivated to do something if there is not much in it for them. That can mean they get an actual reward, e.g. a star for their wall chart, or that they are rewarded by getting what they asked for, e.g. a drink. Your child may be happy to do a task for verbal praise alone or lots of positive reinforcement, which might mean clapping and cheering and telling them how well they have done. Tailor your child’s reward to suit your child.
Of course, one of the main aspects of an ABA programme is addressing behaviours. In order for your child to function well in society, they need to be able to understand some of society’s acceptable parameters. No one is expected to be perfect, but in order to fit in there are certain limits in behaviour. Some very obvious examples would be that in our society we wear appropriate clothing and do not walk around in public naked after a certain age. We might wear very little at the beach, but taking off your clothes in a public place that is not a gym or swimming pool is not acceptable. People expect to be able to go to the cinema or theatre and enjoy watching a film or play uninterrupted by others talking. We need to be able to cross a road safely and understand the rules of traffic. The list is endless and, although eccentricities are acceptable and not everyone wishes to conform to the norm, there are some situations in which your child will be expected to behave in a certain way. One of your tasks as a parent is to help your child achieve this.
You may not wish your child to be forced to fit into a certain mould, but if you wish your child to be happy, then there are some behaviours they may need your help with to address. After all, most behaviours happen because your child is unsure, anxious or unable to communicate properly. Therefore, working through the causes of behaviours and trying to solve them is a large part of any behavioural programme. There are many different methods that can be used and usually only one pattern of behaviour is worked on at a time. There may also be varied causes for the behaviour, e.g. if your child bites objects, this may be due to frustration or it could be due to something organic like toothache, where biting could be relieving the pain. So you might need to try to identify when your child bites and why. If your child wants something they cannot have and you have to say ‘No’ and then they bite, this is probably due to frustration and anger. But if the biting is a random action and seems to have no cause or reason for it, then it may be caused by a physical problem such as toothache.
Teaching a method of communication at the same time is, of course, hugely important as some of your child’s behaviours will be due to an inability to communicate properly. If your child is hungry but cannot tell you or ask for food, they may have a tantrum. You will react by trying to guess what it is they want and will offer various things, perhaps a biscuit or a drink. The next time your child is hungry, they will have a tantrum again as this produced what they wanted last time. Thus, a pattern of learned behaviour is built up. If your child can be taught a word, symbol or sign for being hungry, they will learn that this is a much more effective and less exhausting way to get something to eat. This can have a huge impact on their lives and your own. A child having a tantrum in the middle of the street is awful for everyone involved. However, do not worry about the general public and what they think: for you and your child, a tantrum is equally upsetting.
An ABA programme should be able to work on all aspects of your child’s life, including behaviours, communication, socialization and play skills. Everything taught will be broken down into small stages and adapted to your child’s individual needs. Progress can be as fast as your child is able to learn and develop.
ABA tutors should have some previous experience of working with children. If they do not have knowledge of how neurotypical children develop, speak and play, how can they teach your child to do so? Although there are highly qualified courses available in ABA, in reality only the supervisors and senior tutors may have these qualifications. Some tutors may have psychology degrees or teaching qualifications, but the most important quality is a genuine love for children and the wish to really improve their lives. The tutor needs to be able to make learning fun for your child, so they need to have good play skills and a positive outlook on life. It can be great fun working with a child on an ABA programme but at times it can also be very challenging.
Initially, you will have to fully fund a programme yourself without any finance from your local authority (LA). This can make ABA a very expensive therapy to commit to. There are hardly any LAs willing to fund a programme without a battle, even though ABA is proven to be the most effective therapy for a child with autism. In addition to the expense, the LA has to trust the parents who are effectively running the programme to run and manage it successfully. In reality, this can mean that you may have to fund your programme for at least a year. You will then most likely face a tribunal to try to secure funding for the programme to continue. You will have to pay all your legal costs plus reports from expert witnesses, such as an educational psychologist. Even if you win against the LA and are granted funding, you will receive funding only from the date that you are awarded the funding. So you will not get any backdated funding or your court/tribunal costs. You need to ensure that you have sufficient funds of your own to keep the programme going until this point, at least.
We had already re-mortgaged our house for our twins’ ABA programme and couldn’t beg or borrow any more money, so for the first year of running our third child’s ABA programme, we had two lodgers in our house to fund the tutors’ pay and tribunal costs. This meant the twins having to share a bed in the smallest room and the presence of two extra adults in our house on top of three sets of tutors coming and going on a daily basis. It was like running a school and a B&B all in the one house. We had to do it, though, as we had seen how much progress our twins had made and knew we had to do the same for our third son. It was a very difficult year before we made it to tribunal and was made even harder, of course, by having to come to terms with the fact that our third, beautiful, smiling boy also had autism. But looking back, I would do exactly the same again, without a doubt.
An ABA programme is often run for between thirty and thirty-five hours a week. Usually, your child will have a morning and an afternoon session, Monday to Friday. You will probably start with a team of three or four tutors who work a few sessions each a week. Some families additionally have a session at a weekend, perhaps on a Saturday morning. The programme is home-based to begin with, until your child has bonded sufficiently with their tutors. The aim is for your child to be able to attend nursery or mainstream school accompanied by their one-to-one ABA tutors. This may be only on a part-time basis. Because a consistency of approach is required to be most effective, the people who accompany your child need to be trained in your child’s individual programme. It would be too confusing and would prevent your child from achieving targets and goals if the people looking after them were unfamiliar with the programme. This can create problems as some nurseries and schools do not like staff who are not part of their school or nursery coming and working in their environment. A head teacher usually recruits all the staff and your tutors will not have been recruited by the school, but by you. This is fine while your child is working at home. However, when working in school or nursery, you and your child’s tutors need to be sensitive to the needs of the school or nursery and work very much alongside them. Some places may refuse to accept your child with their current tutors, so you need to research carefully which schools will be more open to your child coming and going with their own staff.
Your child’s tutors should have training in the methods used by your consultant or supervisor. However, having a degree in ABA does not automatically make you the best tutor.
In the past, I have employed tutors from all walks of life. Alongside the teachers and psychology graduates who taught my boys, we have also employed a stand-up comic, a few dancers and various musicians.
You will need three or four tutors in your team. This helps your child to learn in a more flexible way. Each person works slightly differently and this will prevent your child becoming too rigid and only being able to do things in the way that a specific person does. It will also help when introducing others like teachers that your child is not too dependent on one person alone. There are not many courses so most families train their own tutors up and on the job using more experienced tutors to work alongside and train the new ones. For most parents, one of the hardest parts of running a programme is finding, recruiting and keeping good tutors. It is said that you lose approximately 50 per cent of the tutors you take on in the first few months. It will be up to you to place advertisements, interview, train and pay all your tutors. You may not have run a business before, but you will soon feel like you are running one and will probably have to set up the whole programme without help, and then move on to fight the LA for the funding to continue to keep it running. An ABA programme may be very beneficial for your child and in the very long term cause you fewer problems, so that in five or ten years’ time your child is much more able than they might otherwise have been. But it really does take a lot of energy and is always very stressful for the parents to manage.
I ran three full-time home-based ABA programmes for eight years and it has certainly taken its toll on me, mentally and physically. I also had the inevitable three tribunals in order to gain funding – this on top of running the programmes is more than one parent’s work. You really end up by putting your own life on hold in order to do the best you can for your child or children, but you should also bear in mind your own mental health in doing so. I could write a whole separate book on the ins and outs of running an ABA programme. The programmes we have run have been the most effective things we have done for our boys, but they have also been the hardest, most stressful experiences I have ever had to go through. Despite the effect it has had on me, I am currently running my fourth son’s programme because I still believe it truly changes the outcome for my children – for their futures.
There are some dedicated ABA primary schools now and a few secondary units. These use ABA methods to teach children and all teaching is done on a one-to-one basis within a small classroom. The advantage of a school is that you do not have to manage a programme yourself, so your child will be educated every day whatever happens. On a home programme, if your tutor takes a day off sick or for holiday or leaves your programme before you have had time to replace them, then you have to look after your child all day. They will miss valuable therapy time unless you have no other children and no paperwork and no housework and you are a great therapist yourself! A school will be able to take your child every day. This is a big consideration if you are a working parent and need to rely on being able to get to work. You will also not have to worry about employing tutors and all the day-to-day management of your child’s programme, so clearly this is an easier option.
However, depending on your child, there may be a negative side to an ABA school. One of the principles of an ABA programme is that it is intended for use alongside mainstream teaching. When your child is very young, one of the most important aspects of any programme is that your child is encouraged to integrate and mix with other children. Literacy and numeracy skills can be taught at a later stage than for other children, but the ability to socialize is fundamental to your child’s happiness and well-being in the future. So, many parents prefer to keep their child in a mainstream setting for the first few years just for the socializing element. The hope is always that your child will be able to function in mainstream life as they grow older, whether or not they have academic abilities. For the future, this means that your child may be able to cope in the everyday world we all inhabit, and be able to go shopping, watch a film in a cinema or even enjoy a drink in a pub. Obviously, the younger your child is exposed to mainstream life, the easier it will be for them. If your child is able to mix with other children without becoming distressed and they are able to function in a mainstream setting, albeit with help, then you may want to consider an ABA home programme with mainstream inclusion. If, however, your child cannot cope in mainstream nursery or school for various reasons, then an ABA-based school may be a good alternative.
My four boys have all had one-to-one tutors at home from the age of two or three and then were gradually integrated into mainstream nursery, followed by primary school accompanied by their tutors. Although it was hard for them because they found it overwhelming at times, it gave them the opportunity to mix in mainstream society with a suitable peer group and to learn at first hand appropriate social interaction. Young children are much less judgemental than adults and will accept your child for who they are and not for what they can or cannot do.
Your main consideration must, of course, be the overall well-being of your child. It would be unfair to expect any child to cope in mainstream if they cannot access any learning there as they are too overwhelmed by all the noise, activity, etc. An unhappy, stressed child will not benefit from being in an environment they cannot tolerate.
There are other individualized programmes that are not so well known but which may be more suited to your child. ABA may be the right approach for some children and their families, but for others, both the parents and the children, it might just be too stressful. If you are not happy with your programme, ask to visit some other programmes and talk to other families, different providers may work in a way more acceptable to you so consider this before giving up on a programme.
Another option to consider is a specialist ABA school. These are mainly based in London as they are still a relatively new concept in education. At one of these schools, each child will have a one-to-one trained ABA tutor within a very small class. The class then additionally has a supervisor/class teacher who oversees the one-to-one tutors so that there is a very high level of support for each child. Again, each child’s programme will be individualized according to their needs. The advantage of an ABA school is that as a parent you do not have to run and manage your child’s programme and you do not have to rely on a full team of tutors turning up to work with your child every week; a school will always be able to accommodate your child. For mothers who would like to try and work, this is really the only solution as mothers running a home ABA programme will inevitably find themselves without tutors for days or weeks at a time due to sickness, absence, lack of tutors, etc. It is hard to emphasize what a huge commitment running a home programme is. With a school, you will have the reassurance that your child will always be cared for and taught at the specified times. Some ABA schools may also cover secondary education, too.
If your child finds socializing with mainstream children too stressful, or is unable to be in a mainstream setting for any period of time due to one of any variety of reasons, then a specialist ABA school may be a kinder environment for your child. Your child will be helped to integrate and socialize at their own pace and will be placed in groups according to their level of interaction and communication. The level of support at an ABA school will also be very high, with a corresponding staff:pupil ratio.
One of the problems with choosing a specialist school of any kind is trying to secure funding for your child to attend. In reality, if your LA has any other provision to offer that it deems adequate, you may have a huge battle in the form of a tribunal on your hands in order to win the funding. ABA schools are nearly always independently run and some will not take children privately funded, which means that even if the parent is willing or able to pay, the school will only accept children funded by their local LA.
Mainstream or Not?
The final consideration is whether you wish your child to be educated alongside mainstream children or with other children on the autistic spectrum. This is often a very personal matter about which some parents feel very strongly one way or the other. In a democratic society, it would be nice to think that a parent could make that decision themselves, but the authorities may wish to intervene and make decisions based on research or, indeed, on cost. Many parents opt to try to educate their child in mainstream to begin with and, if this is not successful, they may then choose to withdraw their child from mainstream school and request a specialist provision. It is often easier for a child to start in mainstream from the beginning than to change back to mainstream from a special needs school at a later age. However, this is always very individual to each child. Some children are not ready for a mainstream environment at a very young age, but after some therapy and intervention they are more able to integrate slowly into a mainstream environment. You may need to take professional advice on what choices you make, but you should also be guided by your child and their well-being and happiness. Your dream may be for your child to be in a mainstream school, but if the reality means that they are unhappy and not flourishing, they will not be learning. So you may need to consider other types of educational provision. A child who is doing well with an ABA programme, but finds other mainstream children and all the commotion in a school too much, may benefit more from being in an ABA specialist provision.
SCERTS®
The acronym SCERTS is a registered trademark and stands for:
Social Communication – the development of spontaneous and functional communication
Emotional Regulation – to develop a well-regulated emotional state in which to enhance learning and to cope with everyday stress
Transactional Support – support to modify and adapt the environment and tools to support learning, e.g. PECS
SCERTS is a fairly new therapy devised in the last five years or so by a team that includes an SLT and other special needs therapists. It encompasses other known therapies, including ABA, TEACCH, Floortime and RDI. It promotes child-initiated communication and is best used in an environment in which children can learn from other children as role models. It may be adapted for use in the home in a similar way to an ABA programme or used in schools. Ideally, it is utilized in mainstream settings where children can learn from good speech and language role models. It differs from ABA in that it promotes child-initiated communication in everyday activities and the ability to learn spontaneously. It is therefore a more child-led programme than an ABA programme, which is often adult-led and -initiated. A child’s progress is monitored systematically and regular targets are set and charted, again in a similar way to an ABA programme.
You may find that your consultant or supervisor will adapt your child’s individual programme using a mix of the SCERTS approach and some aspects of a verbal behaviour (VB) – a version of ABA – programme and maybe some relationship development intervention (RDI) or intensive interaction (II). These are all valid approaches that can be used together, and a very experienced consultant should be able to draw on aspects of these similar approaches and adapt your child’s individual programme to suit your child’s needs. A rigid approach is not healthy when working with a child with autism as their needs vary so much. The most important aspect is that your child is able to learn in the way that best suits them and their learning skills, and not what the programme is called. Some people find they may need to vary their teaching styles enormously depending on the child they are teaching. Obviously, all teaching needs to be fun and enjoyable for the child so that the child wants to learn and is motivated to learn.
There are many other lesser known therapies, some of which are outlined here.
Relationship Development Intervention (RDI)
This is an intervention that is intended to improve social and emotional relationships. It is a trademarked treatment programme and there are specialists trained to teach the method to families as it is very much a family-based programme. It aims to increase the ability of a child to form relationships. This method is often used in conjunction with other methods.
Intensive Interaction (II)
Intensive interaction aims to develop the fundamentals that precede speech development. These include physical contact and enjoyment of being with another person, using and understanding non-verbal communication such as eye contact. It is a highly practical method and requires no specialist equipment except a sensitive person to interact with.
This method was developed based on the first year of a baby’s life and how that baby learns the fundamentals of communication. It is often used with pre-verbal children, but can also be used with those who have developed speech. The sessions should be frequent, intense and fun.
HANDLE® is another registered trademark, the acronym of which stands for Holistic Approach to Neuro-Development & Learning Efficiency. It was devised by a lady called Judith Bluestone, who herself was born with severe sensory issues.
The programme comprises a series of exercises to share with your child to enhance their learning. One of its basic precepts is that a stressed system is not a good state in which to learn, so all the exercises are intended to calm the sensory system.
Son-Rise
This programme was devised in the 1970s by the Kaufman family for their son with autism. It is a system for parents to use when interacting with their child and the emphasis is on creating a stimulating, loving and nurturing home environment. One of the more controversial aspects of it is that it encourages parents to join in with any ritualistic or repetitive behaviours (unlike other programmes, which work to eradicate these behaviours). The controversy is whether these behaviours should be worked alongside, tolerated or removed. For example, if your child makes a strange noise, you may wish to ignore it or take active steps to prevent your child from making this noise. In a Son-Rise programme you would join in with your child and perhaps make a similar noise in response. This may be the beginning steps of communicating with your child and entering into their world instead of trying to make them part of our world as we see it. Your child may be making that noise in order to communicate something to you. By joining, you will be bonding with your child. From there, you may be able to adapt the noise to something more appropriate, such as a single word that tries to convey what your child may be wanting to tell you.
Although in a Son-Rise programme there are concepts to be worked on, such as extending time spent on an activity or increasing eye contact, there are no demands as such placed upon your child. The therapy aims to increase your child’s own awareness and confidence by a situation of total acceptance. This means that there are no good or bad behaviours, as such; whatever your child does is acceptable and the therapist will join in with them in a non-judgemental way. The basic idea is to join in with your child’s world in order to encourage them to reciprocate and join in with your world.
TEACCH®
Some schools use Treatment and Education of Autistic and Related Communication Handicapped Children (commonly referred to as TEACCH), which is a structured teaching programme designed to help integrate those with autism into the wider community. It is not a single method or technique, but encompasses many aspects of helping a child with autism by doing things such as reducing key autistic behaviours and adapting the environment to suit a child’s needs.
Biomedical Treatment
Some people now believe that autism may have a link to medical issues and as such requires expert medical treatment. This is known as biomedical intervention. You may want to consider the biomedical route and try to treat some of your child’s physical or behavioural problems in this way. These can include specialist diets, nutritional supplements and other therapies. For example, biomedical treatment to help your child’s digestive system may be beneficial to some children and may remove a source of pain or discomfort for your child. The removal of pain could result in fewer tantrums and an increased ability to interact and to learn, and not just the obvious results of perhaps a more normally working gut. Some parents have reported successes in reducing the symptoms of autism in their child when following a biomedical programme.
If you consider trying biomedical intervention, you must seek professional advice. Biomedical treatment is not currently recognized as mainstream medical practice and is not available on the NHS.
So, many therapies are dependent on others in order to produce the best results. Just treating your child’s gut is not enough if you do not then fully utilize your child’s increased potential to learn. You will need to support their enhanced ability with other learning therapies, such as an ABA programme.
Education and the EHCP Process
At some point you will probably need to apply for additional help for your child. This may well be before your child even commences in a nursery or school setting. The earlier you start any form of extra help or therapy, the better the outcome for your child.
SEN Support at School
If your child has been identified as having some problems at school, he or she may receive special educational needs (SEN) support. All schools should have a clear approach to identifying and responding to SEN. Mainstream schools should publish their SEN arrangements, and these should be available to be read on their school website. Further details should also be found in your local authority’s Local Offer.
This may mean that your child may need some additional hours of support within a nursery placement or school setting. They may need help in many different ways, perhaps placing them in a quieter area to learn or to encourage certain skills. An Individual Education Plan (IEP) may be formulated by the school, but as a parent you should also be involved in the discussion about what is included in this IEP. The IEP is a planning, teaching and reviewing tool, and should set out three or four precise goals or targets within time frames. These short-term targets and strategies for your child should be different from, or in addition to, those in place for the rest of the class and should be reviewed on a regular basis. As an alternative to an IEP, some schools now use provision mapping, which outlines the provision that the school can provide.
Your child with autism will almost certainly need specialist additional help from a speech and language therapist (SLT) and most likely from an occupational therapist (OT), too.
All schools and nurseries will have a designated Special Educational Needs Coordinator (SENCO). Your child may need additional hours of one-to-one support on an individual basis, or to be placed in a small group of children who may have similar needs. The group may have specialist support, or your child may have one-to-one support within the group. Your child should have an individualized programme, which means that they should have the appropriate support for their own needs. They may need a combination of support. For example, if they have speech delay, they may require some one-to-one intensive speech therapy sessions; additionally, they may also attend a small speech and language therapy group, which may be within the nursery or school setting or even outside of it. For example, if your child is reluctant to speak up in class, the IEP may have a clause so that the teacher is reminded to prompt your child with a question on a regular basis to encourage participation.
The level of support needed by children with autism can vary enormously, hence the different levels of support available. If you have a very inclusive school with good SEN practice (and provision), then you may get the support your child needs without having to fight too hard to get it. If, however, you feel your child needs more support than they are receiving, then you need to be prepared to battle on their behalf to get as much help as you feel your child requires.
In reality, most children with an early diagnosis of ASD will require more support than a school can offer without an education, health and care (EHCP) plan in place. You will most likely have to apply for an EHCP for your child before they can even start to attend nursery or school in order for some support to be put into place prior to them starting. As EHCP plans can be applied for from birth, this means that if your child has obvious and severe difficulties you can apply for an EHCP plan as early as you need to.
In the past, a child was given a statement of SEN and the process you went through in order to get extra educational help was known as ‘statementing’. Although statements have now been replaced by a new system called EHCPs, many people will probably still refer to this as going through the ‘statementing’ process.
In September 2014, the Special Educational Needs and Disability (SEND) reforms were fully implemented to phase in the new EHCP plans. Statements used to be issued to children between the ages of two and nineteen and were solely for the purpose of SEN. The new EHCP plans can be issued from birth until the age of twenty-five. All existing statements are still valid and the LAs have until April 2018 to transfer all existing statements to EHCP plans.
Education, Health and Care Plan (EHCP)
The old system of issuing a statement has been phased out and SENs are now included in the EHCP process that encompasses SEN and health and social care needs. The government has decided that each LA can decide their own format for an EHCP, but the government still maintains control over the content so the EHCP has to include the same categories. There are several parts in the EHCP listed from A to K. For educational needs, the specific sections are part B (the special educational needs), part F (special educational provision) and part I (school placement).
For those children with severe and complex education and health care needs, this plan should bring together all aspects of care they require. For example, your child may have a physical disability and require an educational setting that can meet both their SEN and their physical ones. There may be a cross-over between social needs and educational ones in a child with severe behavioural issues. If the behaviours are not being managed correctly, then it will be almost impossible to try to educate a child in the normal way.
The Local Offer
The Children and Families Act 2014 placed a statutory duty on each LA to develop and publish its Local Offer. This Local Offer is individual to each LA and puts together information about the availability of education, health and care services, plus leisure activities and support groups, for local children with disabilities and SEN in that area. Each LA’s Local Offer should be easily accessible on the internet. Online you should also be able to find information on SEN provision within local schools and what type of specialist schools are available in your area.
The Local Offer is intended to make information easily available to help you make an informed choice so that you can be actively involved in the educational decisions for your child.
Requesting and Obtaining an EHCP
For the purpose of getting educational help for your child, the process of requesting and obtaining an EHCP is similar to the old process of getting a statement in place. Going through the EHCP process can be one of the hardest things you need to do as the parent of a child with special needs. It can be a very demanding, stressful time and emotionally exhausting. It is also a lengthy process and will probably take a minimum of six months from start to finish before you get the final EHCP. If you do not accept the final EHCP and end up fighting to change it at the Special Educational Needs and Disability (SEND) Tribunal, the process could take up to a further year. Meanwhile, you may be paying for any additional support you feel your child needs, but which is not addressed by the EHCP you have been offered. So the process can be very drawn out and very costly in term of your finances and emotions.
The actual process of applying for an EHCP takes approximately twenty weeks. When you put in a request for an EHCP, your LA has six weeks in which to decide whether to go ahead with a full assessment. In this initial six weeks, your LA should seek appropriate advice and information from varying professionals. If it decides not to go ahead with the full assessment, you have the right to appeal against this decision. The whole process of EHC assessment and developing the EHCP, from the point at which the assessment is requested until the final EHCP is issued, must take no longer than twenty weeks (subject to exemptions). If any exemptions apply, you should be informed of this.
Your LA will seek advice and information about your child from you as the parent, from someone such as a head teacher from an educational setting (if your child is already in one), medical advice from a health care professional, psychological advice from an educational psychologist and from social services in relation to social care.
Your child will have to be assessed by a variety of professionals and the reports they write can be distressing to read. In the best interests of your child, the reports must state bald facts and the needs of your child while being devoid of any emotion. It sounds quite strange to say but in time you will be grateful for a report that paints your child’s difficulties in the worst light as this will help to increase the amount of support you are offered. It is, of course, necessary for professionals to focus on your child’s weaknesses as well as their strengths. All the reports are intended to help your child receive the highest level of support possible.
I would receive a report that would make me cry as I read it. On paper, my beautiful boy sounded so severe and so hopeless. No mention of his affectionate nature or his lovely smile. But, through my tears, I would smile and silently thank the writer for a report that would help me in the fight to get what my son needed.
The new system of EHCPs now focuses more positively on what a child can do and what they have achieved as well as what they are unable to do and need support with. So your child’s EHCP and other reports should now mention both the positives and the negatives.
However it is disguised, for example, labelling a child with global developmental delay as opposed to labelling them with having severe learning difficulties, you will be reminded that this label is actually being applied to your precious child. Your child most probably will have been born perfect and only recently have begun to lose skills such as eye contact. You may only have been aware for a short time that your child is no longer gaining expected skills such as speech. Most likely you will still be in a state of grief, shock or, for some people, denial about your child’s condition or expectations. Coming to terms with your child’s diagnosis and then almost immediately being expected to put into place all that your child needs, is an enormous emotional undertaking for you as a parent. For some people, taking action may form part of their own healing process, and taking on the project that is now your child’s development may keep you so busy that you have little time to dwell on anything else.
During this process, you may want to request a certain nursery or school placement, or perhaps a different form of education. You can also request that a LA considers making a direct payment to you instead of special educational provision, so you can then spend this on education yourself. This is known as a personal budget and information about the availability of personal budgets should be found within each LA’s Local Offer.
You will receive a draft EHCP once all the assessments have taken place, and you will have fifteen days to consider the plan and respond to it. Once the twenty weeks’ time limit is reached, you should receive the final EHCP. Ideally, it will contain everything you have requested, but if your LA is not in agreement with your wishes for your child, you may then have to start an appeal process to try to get what you do want. If, for example, you have decided upon a therapy such as ABA for your child, it is unlikely that your LA will agree to this. Be warned: appealing to a SEND tribunal can be a very expensive, time-consuming and emotionally draining process.
We had three costly tribunals for three of my boys to get the ABA therapy I felt they needed. Although it cost us a great deal in monetary terms as well as stress, I still feel absolutely convinced that my boys needed this therapy. Fortunately, the tribunal panels agreed in our favour. However, we still had to pay for all the therapy during the process as well as the legal costs, which are not normally refundable.
Getting the Right Educational Help
Beware of those who tell you that autism is a lifelong condition and that because there is nothing you can do about it, you should just get on with it and accept your child’s diagnosis. Autism is one condition where there is a great deal you can do. Admittedly, you may not be able to ‘cure’ your child, but you can make a huge difference to their quality of life. Getting the right kind of educational support is one of the most important things that you can do for your child. Hope is a crucial part of your child’s future.
The use of the term ‘delay’ implies exactly that: that your child is simply delayed and will, by assumption, be able to ‘catch up’. Perhaps a child who is delayed in walking will start to walk a little later in life than other children, but in the end they will walk perfectly normally. A few years later, there will be nothing to indicate that there was ever a delay with walking and nothing to distinguish them from other children. Unfortunately, a diagnosis of delayed speech in autism is not very helpful. It can mean a minor delay or a very serious one in which your child may never acquire a normal level of speech. The term ‘delay’ is probably used because in autism it is very difficult to predict how each child will progress. At age three, if a child has no language, it is hard to predict whether they will acquire normal language in later years.
One of my boys at three just hummed and could not understand or speak any language at all. He was labelled as being on the severe end of the autistic spectrum because of this. With huge amounts of intensive therapy and support, he is now fully conversational and although he does not converse at the same level as a child his age, he would now be labelled as having high-functioning autism.
A more accurate prediction of future ability can be made at around the age of five. If your child is still non-verbal at age five, then the likelihood of acquiring normal speech would be much lower than it might have been at three. Even so, this is still just an educated guess, and some children have been known to start speaking later than the age of five and do very well. The lesson is: never give up hope and accept what you have been told as an absolute.
Professionals tend to paint a gloomier picture than parents do. Having said that, it would be far worse if you were told that your child would ‘recover’ in the future and you held onto false expectations while your child did not improve as much as you expected. Your disappointment and sorrow would probably be worse than the original diagnosis of autism. Giving false hope is not fair to anyone. It is perhaps better that your child’s prognosis is unpredictable and, if you achieve much more for your child than was expected, you will of course be delighted and very proud. The outcomes for a child who has an early diagnosis of ASD cannot be precisely predicted and measured. In some ways, this is what keeps parents fighting for their children every step of the way – somehow the fact that you really do not know what your child may be capable of achieving keeps you going.
So you will need to get the best help for your child as soon as you can. The earlier you start therapy and education for your child, the better their outcome will be. You may wish that someone else would come along and sort it all for you, but only you really know your child and what is best for them. If you rely on the authorities and professionals to tell you what your child needs and what is best for them, you may end up with the minimum support that they are obliged to offer. You may also not end up with the most appropriate support for your child.
Choosing a School or Nursery
There are many choices to be made, such as opting for mainstream education or special needs schools and nurseries. There may be choices later on as your child gets older when you may have to choose between a residential school or keeping your child at home and sending them to school in the daytime. There is no direct path for any child on the autistic spectrum and along the way you as a parent are entitled to make choices and decisions about your child’s education. Obviously, you will seek guidance on the choices that you make, and this guidance may come from other parents or from specialists.
Just looking at schools or nurseries can be an exhausting process on its own (and sometimes, sadly, a disappointing one). A visit may entail a lengthy discussion about your child’s needs and perhaps an assessment involving your child. Although all mainstream schools are legally obliged to accept children with SEN, there is a vast difference between a school that actively welcomes children with special needs and one that accepts them because it must.
At nursery level, there are many private nurseries that will take state funding, so you may need to make a choice between a private nursery and a state-maintained nursery that may or may not be attached to a primary school. Even at nursery level, there are many differences in how a nursery is run. There are Montessori nurseries and others that expect a child to achieve certain academic goals in numeracy and literacy before they leave to go to primary school. Some nurseries place a greater emphasis on play or the arts.
Nurseries can also vary in size, so you might find a large nursery with extensive facilities and many children attending it, or a smaller nursery, perhaps based in someone’s house, with fewer children. Depending on how your child is able to interact with other children, or whether they have sensory issues, you may need to consider the environment within the nursery quite carefully.
Mainstream or Special Needs?
There are also a limited number of special needs nurseries or even autism-specific nurseries. From a very early age, you may need to make an initial choice or decision about whether you wish your child to be educated in a mainstream setting or a special needs one. There may be an obvious choice depending on the severity of your child’s autism at that time or the issues that they have. If not, there are different arguments for and against both options.
A child with autism may be non-verbal and so would therefore seem to be better placed in a special needs environment, however they may be able to cope in a noisy, mainstream environment and gain some valuable social skills while there. Later on, if the child is having difficulty in accessing mainstream education, they may then move to a special needs school. On the other hand, another child may be fully verbal and able to communicate, which would imply that they should be in a mainstream setting, yet they may have severe sensory issues and find a mainstream setting overwhelming. It may be therefore that the child who appears to be higher functioning is the one who most needs to be in a special needs environment at that time. So, choices need to be made about where that child would most benefit from being at that point in time. Currently, in order to get a high level of educational support for your child, you will need to apply for an EHCP (see page 169), although a nursery may be able to provide a low level of support if this is all your child requires.
Do not confuse your child’s educational needs with care needs. If you need respite care or help to share the care needs of your child, then you need to request help from social services or charities. Educational provision will not provide your child with a babysitter or carer so that you can get on with all the things in your life that you need to function well. If you need help in order to be able to carry on working, then you need a package of support from social services or other agencies. This should be included in the EHCP, but will be separate from the educational provision and should be negotiated separately. Be mindful of this when you ask for help from the educational department. The only exception may be if your child has severe and complex needs and so may need a specialist residential setting that can meet all their varying needs.
Midway during one of our SEND tribunal hearings, our local authority hastily tried to put together a list of possible nurseries to support my children in the afternoons as it was only offering a limited number of hours at a specialist nursery. I was fighting for a full-time ABA programme that would provide the educational support needed by my boys. I answered that I wasn’t looking for childcare in the afternoons: my boys needed education, not babysitting. We were awarded the full hours of an ABA programme that we had asked for.
You will need to be very clear about your expectations and do your own research into what is available and what you feel would be best to support your child. You can ring up nurseries and ask to visit and meet with the staff. Try to talk with other parents in your area to see what is on offer, whether state-funded or privately funded. Unfortunately, your LA is not obliged to offer the best that is available at any price, as it does have budgets to manage. Your job is to get the best provision you can for your child while the job of your LA is to keep costs down. You will not therefore be able to get everything that is available that your child could benefit from; there would not in any event be enough hours in your child’s day to do that. You need to prioritize and decide what would have the most beneficial effect and what is reasonable to expect. You should be able to find out what other parents have managed to get onto their child’s statement or EHCP, and that should be your minimum aim. Also bear in mind that the needs of all children are individual, so one child may have been awarded a higher level of support than another because their needs are greater. This is particularly pertinent in the case of a diagnosis of ASD as the needs of a child can vary so enormously. The spectrum is a very wide, all-encompassing label and can be applied to those children who will be able to lead an independent life and who have normal language as well as those who will be dependent on full-time care for the rest of their lives. Therefore, it is your child’s needs that are the most important factor to consider when applying for an EHCP, and not your child’s diagnosis.