Diseases that can be prevented
I grew up in the 1950s and as a small child I remember photos often appearing in newspapers and on TV showing new types of iron lung machines which helped save the lives of the large number of polio victims at the time. I clearly remember being taken to the doctor to have my first polio vaccine on a sugar lump and how relieved my mother was that finally they had a way to stop me and my sisters from getting this horrible disease. In those distant days, vaccines were seen as a fantastic scientific advance that would save lives and suffering. We all were happily vaccinated against the various ‘childhood diseases’. More vaccinations were added to the arsenal of vaccines as I grew older and the future looked so good.
Now unfortunately, it is so long since anyone has seen these dangerous infections in person that many don’t understand how bad the diseases can be or why to bother with vaccines. The lack of vaccinations was eventually going to lead to outbreaks of disease and this is exactly what we are seeing right now. I just did a quick Google search and found, in a few minutes, that in the past 6 months there have been outbreaks of mumps, measles, chickenpox, whooping cough and diphtheria in Australia and the US and an outbreak of polio in nearby Papua New Guinea. There have also been outbreaks of weird polio-like disease in the US as well, so new things are popping up and we are in need of new vaccines for new diseases. I was actually a bit shocked as it was worse than I realised.
Why not vaccinate?
Why are people not having their children vaccinated? There seem to be 2 main beliefs around;
- These diseases are not around anymore so there is no need to vaccinate (not true at all any more, as Google can reveal whenever you want to look, they will all come back without vaccination programs)
- Vaccinations are dangerous and can cause autism. This is also not true and there are many epidemiological studies from around the world that show that there is no difference at all in autism rates in populations which have or have not been vaccinated and of course there should be big differences if vaccines are to blame. It might seem to an individual parent as if autism is linked to vaccines since sometimes parents become aware of autism in their child at around the same time as the vaccinations are given. However, this is just a terrible coincidence.
All of these so called ‘childhood diseases’ are very unpleasant to get, all are very variable in how badly they affect you and all can kill or damage some people. You don’t know at all if you or your child will have a mild case or a serious case when you eventually get it. Even the mildest cases of these infections are not nice to endure. Why would you choose to suffer them and their risks if you didn’t have to?
Much longer term effects
What many people don’t realise is that as well as actually getting the disease and having to put up with weeks of being very ill and looked after, you or your child may have long term or even life time effects. Chickenpox can often result in much later bouts of very painful shingles since the chickenpox virus hides away for the rest of your life in your body and may be triggered to come out much later and make you sick again and again. I know several people with recurring shingles and it is extremely expensive and debilitating. Polio is similar, some people who had it as a child developed post-polio syndrome 30-40 years later with muscle weakness, breathing or swallowing difficulties and inability to sleep. Measles is a tricky and insidious virus. Amazingly, it has the ability to wipe out your immune system’s memory so you have no resistance at all to various other diseases. Researchers have found that, for many years after a measles infection, sufferers are vulnerable to other infections and death rates are much higher for them than for people who have been immunised or never had measles.
So the conclusion for me is that vaccinations continue to be a good thing and my children and grandchildren are all thoroughly vaccinated against everything possible. I have also had my adult booster shots and a yearly flu shot as I want to keep happy and healthy. Alison (Principal)
What does behaviour modification mean?
Behaviour modification sounds a bit sinister but in fact it is just the scientific term for something everyone uses with all children. We all use behaviour modification to train a child in how to interact with the world around them in the best possible way. A small baby screams until its needs are met but this cannot go on into adulthood as everyone views an adult who rants and raves until they get their own way as tiresome and immature and to be avoided. Instead, we shape our childrens’ behaviours, making it clear to them which behaviours are a really good idea (e.g. asking nicely in a calm voice) and that they lead to great consequences (being liked by everyone and getting what you want most of the time). Behaviour modification is not always done well, however, and children can become ‘spoilt’ or stubborn if it is not done quite right. With many kids, it is fine to do it only approximately right as you still get a reasonable child at the end of it but with some kids, such as those with autism, anxiety or other cognitive disabilities, it may need to be done really well and with great determination if it is going to have the desired effect of producing a happy, contented child.
How does it actually work?
We do a particular behaviour because we have discovered that doing it will cause something to happen which we like or want or will stop something happening that we don’t like or want. The more likely it seems that a behaviour will produce a particular result, the more likely it is that we will do it. (Actually a person does not have to be consciously aware of all this, a behaviour and result can become linked together without a person thinking about it so it still works in a child with a cognitive disability).
If you discover that pressing a button on a coffee machine will result in you getting a great cup of coffee, you are very likely to press it again. If a child discovers that throwing themselves on the floor and screaming gets them an ice cream, they will do it any time they want an ice cream. All children go through a phase around 2 years of age when they do this kind of behaviour very often. If they want something (or don’t want something) or can’t get their way, they have a tantrum. It can be pretty amusing up to a point, for a while. However, if a tantrum is followed by them getting their own way it makes it much more likely that tantrum behaviour will happen again. The best thing to do is ignore the tantrum completely until it stops and then get the child to give some sort of socially acceptable way of communicating their wants or needs (such as talking or pointing or accepting distraction when you say NO to something). I think a lot of people get this bit. However, kids with special needs or anxiety disorders can do really great tantrums. They seem to have a special knack of being really LOUD and going on for a LONG time, seemingly much longer than an average kid. They seem to get stuck in their tantrum and find it hard to get back out again. What do we do then? Read on…
Something that is really important to know about is called by scientists ‘intermittent reinforcement’. As the name implies, this means that a reward is obtained every now and then. So, if your coffee machine is well known for not always giving you a cup of coffee the first time you press the button, you are likely to stand there and press it numerous times until it works. You will be happy to show the ‘pressing the button’ behaviour for quite a while until you get the result you want: a great cup of coffee. The coffee machine has trained you to keep going and going. You can train kids’ tantrums like this as well. If a child has a tantrum and you ignore it, or at least don’t give the child the result he or she wants, pretty soon tantrums will lose their appeal, they are tiring and pointless and a child will work this out (eventually!). However, if your child has a tantrum and at first you sensibly decide to ignore it but sometimes, a bit later on, you ‘give in’ (because they are probably driving you mad) then you have given them, in effect, intermittent reinforcement and you are on your way to training them to keep a tantrum going and going until it produces the desired effect. So basically, if you think you are going to give in, give in immediately! (Better still don’t give in at all, of course)
When your coffee machine finally goes wrong
When your coffee machine changes the rules and stops working altogether, you may discover this immediately. If it normally works every time you press the button and then stops working, you will know straight away (and can be suitably annoyed but then move on). However, if it goes wrong after having trained you using intermittent reinforcement, you will be unable to work out that it HAS gone wrong as you were never really sure how long to keep pressing the button anyway. This is likely to make you really annoyed and keep pressing crossly, because you don’t know if it is going to work or is broken. You will be in conflict; should you give up because it has really gone wrong or is it just going to take a few more presses to work? You will go on trying for a while and probably end up pressing that button much more than in the past. In other words, your button pressing behaviour will escalate for a while until you finally become convinced that it is not going to work anymore. (Haven’t we all experienced this exasperation?) Then you will finally stop altogether and your button pressing behaviour is extinguished.
This exact same thing happens when a child has learned to have a tantrum with intermittent reinforcement to keep it going. When parents or school staff sensibly make a decision to change the rules i.e. not continue to reinforce this behaviour any more, the tantrum behaviour gets worse (escalates) for a while which is totally stressful for all involved, before it finally goes away. The result is a happier, calmer child, so it is well worth the drama.
What our experience shows us
In our experience here at our school, learned (and therefore also un-learnable) behaviours account for most of the troublesome behaviours we see in our kids with special needs. Some of them so quickly seem to learn that having tantrums is a really great way to communicate and get what they want. Time and time again we use behaviour modification with our students and see big improvements in their general level of calmness, happiness and adjustment to school (and often at home as well) usually in a fairly short time. This is achieved by ignoring and extinguishing unwanted behaviours (e.g. tantrums) and making sure that the nice result (e.g. being able to play with a favourite toy) only shows up after a wanted behaviour (e.g. finishing work).
There are some alternative theories around that parents might feel like trialing to deal with tantrums. Some have found websites which explain tantrum behaviour by a deficit in sensory processing in children with autism, for example. Parents are then in the position to excuse the stressful tantrum behaviours in their child by saying that they can’t help it, as their sensory needs cause it. At the risk of being controversial, I will say that, in our experience at school, this is unlikely to be the case, as behaviour modification works so well for us. Kids with autism or anxiety or other cognitive disabilities may have a ‘sensory overload’ a bit more easily than average kids. This might mean that certain environments are rather stressful, such as busy shopping centres, loud music and so on. However, we have found over and over again with our students at school that with careful habituation and behaviour modification kids who, for example, had been very sensitive to noise, were able to go into and enjoy an amazingly noisy dance lesson with loud music and crazy dancing without much of an issue at all. Gradual shaping of behaviour seems to work well.
In our experience, behaviour modification works the same for all kids, autistic kids are really no different. However, although it is a really effective method, at first it can be quite stressful to do (especially for parents who naturally spend so much time with their children). I think the stressfulness of the escalation stage might explain why behaviour modification is not used as much as it should be and causes parents to look for alternatives that basically avoid facing the issue. Kids with autism are particularly likely to have a major, lengthy tantrum escalation when the rules change, which I know can be extra daunting, but if parents or carers are determined and able to persist, the behaviours will eventually be extinguished the same as for anyone else and the child will be much happier for it.
Remember that the older your child gets the more difficult it will be to modify behaviours that have been practised many, many times and become very established. If you want to bite the bullet and give it a serious go with your child, there are special programs that can help parents who want to reduce the occurrence of tantrums. In Perth there is the Positive Parenting Program which runs face to face courses for parents and grandparents and also has an online program and the Autism Association of WA has various services to help parents with behaviour modification.
Therapy for Children with Special Needs
Our students are very lucky to have the benefit of a variety of therapists working with them; some funded by the government through Disability Services Commission (DSC) or National Disability Insurance Scheme (NDIS) and some funded privately by parents. Increasingly, therapists visit the students at school, work with them there and train staff in how to work with them. We provide (as much as we are able in our little school) a small area for them to work individually with various students, some of them have weekly visits at times. Therapists also have individual meetings with staff and give them written reports of their findings with ideas for how to work with students in class, objectives to be added to their IEPs and so on. This all works well.
However, our experience has shown that all of this additional work being put in at school to help a student may be in vain if the parents are not also using similar strategies successfully at home. We have seen an increase in the number of parents who have a limited understanding of the disability of their child or emotional regulation or behaviour modification and sometimes have no interest in having therapists attend their homes (they have the concept that ‘all that stuff can be done at school’). Many therapists do at least seem to make attempts to work with parents at home but others seem content to come and do what they do just at school and of course this also fits in well with their working hours. However, if parents are unwilling or unable to interact consistently with their children at home, any therapeutic work carried out at school will have a limited impact long term.
Therefore, I believe that we need to be careful not to fall into complacency. It would be easy to take the money from DSC or NDIS, spend funds on teaching school staff (who may already be highly trained) how to work with their students and meanwhile neglect the more vital task of educating and training parents to work with and interact effectively with their children. At Mount Hawthorn ESC we have seen that the educational and behavioural successes for a student are highly dependent on the effectiveness of parent input and, without adequate procedures being consistently in place at home, outcomes are likely to be limited.
For all these reasons, I would like to see that NDIS stipulate that a mimimum portion of all therapies (maybe 50%) should be delivered at home with the active input of parents. It seems to me that otherwise there is the risk that considerable funding will be basically wasted, with a system that looks good and busy but is neglecting a fundamental and essential part of the process, namely involvement of parents in the therapy, training and education of their children.