In this candid interview, Jane Donlan and her son Bob Smith explain how they created the ‘Reward Plan’ and ‘Transition Techniques’ featured in their new book, Helping Children with Autism Spectrum Conditions through Everyday Transitions – co-written with Bob’s father, John Smith – and give some helpful tips on how to make holidays less of a challenge.
Can you tell us a bit about your family, and how you began sharing practical strategies in the forms of presentations and books?
Jane: Bob, John and I live in Manchester in the UK. John and I are separated and have been for nearly ten years now, however we have always very much ‘parented’ Bob together in the same way that we would have done if we were still a couple. We spend Christmas together and go on holiday together and always deal with issues relating to Bob together. Sound ideal? In lots of ways yes, it’s been great for Bob to get the best from both of us and it’s been great for us to have the support of one another where Bob is concerned.
Bob was home educated until he began college in September 2010. He was only fifteen then and so a year younger than all the other students in his classes. During his time of being home educated John worked to support us as a family and I was responsible for the day to day care of Bob and most of his home education. This was very autonomous and child-led and suited Bob. He spent lots of time reading and writing fantasy horror books and mostly chose what he wanted to learn about, for example he had a great interest in dictators and did lots of research on this just because he wanted to. Home education was something I always wanted for Bob and not because he has autism. I would always choose to home educate a child above sending them to school, but that is my choice and I can see the merits of both.
One of the things Bob loved best about home education was that he could be with his dogs Fred and Poppy all day and he got a lot out of this. When we started looking in to college for him it was only supposed to be a few hours a week, but when he was offered a full-time place – even though he was only fifteen – he decided to try it. He has never looked back and is now in his second year. Home education gave him a good grounding for this because he was able to move into that type of environment when he felt it was right for him.
When Bob was younger and way before his diagnosis of autism, he had what we call ‘out-bursts’: kicking, screaming, biting, scratching, punching. It was a very distressing situation for all of us and we were left wondering where we were going wrong. Eventually Bob was diagnosed with autism – Asperger Syndrome – and also Tourette’s Syndrome, Dyslexia and Dyspraxia. It was shortly after this diagnosis, just before his ninth birthday, that we created a Reward Plan to try to help him to overcome these out-bursts. We really had hit rock-bottom and knew we had to do something and soon! In the past I had seen reward plans – star charts, stickers etc. – and the thing I really hated about them was how, although the parent/carer/teacher started out with good intentions, they often ended up using negative techniques, such as taking the star earned by the child for positive behaviour away from them if they then displayed negative behaviour! I never understood this and thought that if I had been paid for doing good work I wouldn’t then expect to give that money back if future work wasn’t so good. On parenting programs, you can see the child is absolutely distraught when their star is taken away from them and parents, etc. often end up using the reward plan as a form of power over the child. I think that is why they are not always as successful as they have the potential to be.
When we were creating our Reward Plan we decided that it had to be 100% focused on the positive – not easy when you are dealing with the type of out-bursts described above. However, we were well aware of the negative impact our son’s out-bursts were having on his self-esteem, and we certainly didn’t want to add to that! And so our Reward Plan was born, and I am not exaggerating when I say that it was almost an over-night success. We kept a chart of Bob’s out-bursts, and found that the number of out-bursts, how long they lasted, also the level of intensity came down significantly within the first week, and massively by the end of week two! We were not expecting such amazing results and were very pleased and excited by them. Bob worked incredibly hard to gain some sort of control over these out-bursts and he really couldn’t have worked any harder. It seemed that acknowledging how hard these out-bursts were for Bob to deal with and rewarding even the tiniest amounts of progress somehow gave him the confidence to cope with them. It was like breaking them down, taking them apart and analysing them and finding practical solutions to them. Bob excelled at this. He does still have out-bursts – the Reward Plan is not a miracle cure – but they are very few and far between now, and never as severe as they were before we put the Reward Plan in to place.
It was Bob’s idea to put the Reward Plan into a book because he wanted to help other families in our situation. We wrote the book together and were very pleased when Jessica Kingsley Publishers accepted it for publication. Create a Reward Plan for Your Child with Asperger Syndrome was published in January 2008. We wanted as many families as possible to have the opportunity to try our techniques, and so we decided to contact our local autism society to see if we could attend one of their parent groups and talk to them about our book and our techniques. The talk went very well and we have done several more talks since then. All proceeds from the book go straight into an account for Bob, so it is nice for him to also be earning some money for all of his hard work!
The Reward Plan has continued to work well for us and we still use it even though Bob is now approaching seventeen. We have continuously reviewed the plan and it has evolved and changed along with Bob. We use it for all areas of Bob’s life including social and communication skills, personal care, friendships, life-skills, risk-taking – the list is endless really! The plan continues to be successful although keeping it up can be challenging and sometimes we do lapse. However when these lapses take place we do notice that things start to ‘slip’ and we have to pull ourselves up and get back on top of it!
How did you develop the Transition Techniques in this book to use with Bob, and how they have helped him?
Jane: We had been successfully using our Reward Plan with Bob for a few year, but felt he needed a little extra help with some of the areas he was struggling with. One of these areas was change: big changes, medium changes, and small changes – all change seemed to present a challenge for him. During our research for help with this, we realized that we were able to find help with the bigger changes/transitions faced by people with autism but were unable to find advice on dealing with the smaller, more everyday changes that our son was being affected by on a daily basis. And so we set about creating our own Transition Techniques which were so simple yet so effective, and they began to help Bob as soon as we started using them. It really is just a case of writing and drawing little pictures, and you don’t even have to be good at drawing! It helps if your child does the drawing anyway, though this isn’t compulsory. When we realized that the Transition Techniques were so helpful to Bob when it came to dealing with the changes taking place during vacations and public holidays such as Christmas, we decided to use them to help Bob to deal with other, even smaller changes in his life, such as the clocks going forward/backwards, coping with tradespeople coming into the house, going from week-day to week-end mode, and so forth. Bob is now much more confident when it comes to dealing with change. The Transition Techniques will never completely take away Bob’s anxiety when it comes to dealing with change, because that is the nature of autism, but they have helped him to deal with it in a much calmer and more confident manner, and even helped him to enjoy and look forward to some of the ‘small’ changes that take place regularly in his life.
Bob: The important thing when trying to progress with the Transition Techniques is to understand that there might be failures along the way, and it’s easy to lose faith in a technique after you’ve put a lot of effort in and it’s had absolutely zero effect the first time you tried to use it. But you have to stick with it for a couple more goes at least. It’s very rare that something will work the first time for you, but what you have to weigh up is the risk that you might have a few arguments or out-bursts while trying a new technique – and then things may be even worse because of the change of a new techniques being brought in – against the idea of never implementing any techniques and therefore making absolutely no progress for the rest of your life. These techniques have helped me personally very much. I’m not going to say that I take all change completely in my stride or that things are 100% better, but I think that they are 75-80% better. What our books are about is trying to give people the tools and techniques to get through some of the darker aspects of living with autism, and to get to a stage where the positives of the condition by far out-weigh the negatives. This is the effect they have had on me.
Why do small changes affect children on the autistic spectrum so much?
Jane: Often children with an autistic spectrum condition find it difficult to understand and make sense of the world around them. The basic social etiquette that most of us learn unconsciously often has to be taught to our children, and then they are not always able to transfer skills automatically from one situation to another. This can make life very confusing for children with autism and therefore very stressful. I think that the need for sameness can help the child to feel safe, as life is then more predictable for them and less anxiety-provoking. Children may struggle to recognize and deal with their emotions, and change can evoke a lot of mixed emotions for all of us. Avoiding change can therefore help to avoid anxious feelings. Because the need for routine and familiarity can be so strong even the smallest of changes can create overwhelming feelings in our children. These changes may seem minor to us neuro-typicals, but it may be that to someone with autism there is no such thing as a ‘small’ change.
Bob: The fact is that the term ‘small changes’ is something that would only be used by someone who wasn’t on the autistic spectrum. Therefore it’s a bit of a strange question because in the autistic person’s mind it isn’t small so they don’t see what they are doing as an over-reaction. It’s just their response to what they see as a big change even if it is something as simple as week-to-weekend. It’s not like they sit down and think and reason out how they are going to behave while things are changing, and in reality no one can plan how they are going to react to something; you can predict how you’ll feel but you’ll never really know. So they don’t think, ‘Oh, tomorrow there’s going to be a couple of small changes, I don’t like the sound of that so I’ll be quieter or angrier or get upset.’ They may well be apprehensive or perhaps they’ll just go head-first into the change, not thinking of any effect it may have on them or those around them. So the question really, I suppose, is: Why does change have such a big effect?
There are probably changes that affect me that you wouldn’t even notice, and changes I probably wouldn’t even notice that affect people who have a different kind of autism than I do. So when we talk about small changes what we mean is small to us, to the person you’d be using the book to help they are clearly big changes, which is why the reactions to them are so big. I think deep down there is something about change that affect everyone, autistic or non-autistic. Any deviation from your normal routine must make you feel something, however minimal, but for an autistic person these emotions are heightened. This coupled with the fact that they have lost the comfort of their normal routine, or at least a part of that routine, causes an emotional reaction inside them which to a casual observer would look out of proportion and unexplainable. But who’s to say that their mind-set on the world and view on change is the wrong one? I’ve always hated spontaneous people; if someone’s dumb enough to not have any forethought at all they deserve everything that happens to them, and they would probably argue that me and other autistic people are too set in our ways. But what makes them naturally right and me naturally wrong? Maybe my and other autistic people’s reaction to these so-called small changes are actually right and in proportion and other non-autistic people who just cross over them are emotionally dull and unable to comprehend the magnitude of what that change will bring about; or maybe autistic people just need to lighten up a bit – who knows? Anyone answering this question is going to be biased in some way, and that will affect how they can answer the question of why change can affect people so much.
Going on vacation can be so difficult for children with autism that parents often opt to stay at home. What tips can you give to make going on vacation less of a challenge?
Bob: First of all I would say ‘plan ahead’. If you are a parent of someone with autism then you should already know what affect change has on them. Therefore you should understand why a massive change like going on vacation, which could include changes in country, climate, weather, what language you hear, food eaten and bed-times, as well as having none of the familiar comforts of home to fall back on, will be problematic. It’s never too early to start planning for this change, however tempted you might be by a last-minute deal or a cheap flight – clearly not a good idea if your child struggles with change because not only are they going to have to put up with it all, but it will be sprung on them so suddenly that they won’t have any time to prepare themselves for it. So book in advance and start to prepare weeks or even months in advance, talk them through what will be happening, the positives, the negatives and all the things that will be different. Maybe be more lenient with what they can eat and what time they can go to bed for a few days before the vacation, just to prepare them for that, and be thorough; think of as many changes as you can and try to get the child involved in the planning – make it something they do for themselves rather than something you do to make it more comfortable for yourselves. That way they will feel it’s actually worth it instead of just something to get out of the way as quickly as possible.
Another piece of advice if you have more than one child, and perhaps some children who are not on the autistic spectrum, would be to make sure that they feel included too. Don’t make the entire vacation about the autistic child. Try to get the non-autistic children involved in the planning as well so that they feel comfortable with what is going on. If they feel left out it will only provoke arguments and make the entire experience more stressful. Most people will have some arguments and disagreements when they are on vacation – that’s just normal, you are not trying to avoid that. What you are trying to avoid is the massive full-blown, pointless arguments that come out of tiny changes that occur while you are on vacation.
Jane: I agree with Bob. The key to reducing your child’s anxiety when it comes to going on vacation is preparation. Vacations are one of the main areas in which we have had success with our Transition Techniques. Letting the child know what will stay the same and what will be different when you go on vacation can be very reassuring for them. Remember to let them know what will stay the same and what will be different when you return from vacation too! There will be many, many changes taking place when you take your child on vacation and obviously you don’t want to overload him/her and make them more anxious, and so writing and making little sketches about these changes – as we do in our Transition Techniques – will offer the information to your child in a gentle way and can be done at their pace.
You provide useful signs, sketches and scripts in the book. Can you pull out some examples that are designed to help children cope with small changes?
Bob:
Airplane – the sign
The airplane sign is helpful for giving the young person some kind of physical reminder of what they will be doing when they go on holiday. It gives them something they can hold onto and keep looking at as they head to the airport. This makes it easier for them to deal with the changes that are going to take place. If it’s helpful, you can write a script on the back of the sign talking about going on the airplane and traveling.
Jane:
More visitors over Christmas – the sketch
This sketch proved really helpful to Bob as he was never comfortable with people calling at the house unexpectedly, which people often do at holiday time. We drew the sketch with Bob, talking about how things are normally and how they may change over the festive period, i.e. that more people may visit us during this time. We took into account how this was likely to make Bob feel and made him aware that if he did start to recognise uncomfortable feelings in himself, or if we started to notice that he was looking overwhelmed, that it would be O.K. for him to retreat to the sanctuary of his room for some peace and quiet!
Of course if you are using this sketch you can adapt it to suit your child and your circumstances. For example, you may wish to use it to explain how things will change in your house during Diwali or Ramadan; the situations you can use these techniques in are endless. I think the sketches, along with the other Transition Techniques, allow an element of control over change for children with an autism spectrum condition – they see the change coming and have chance to prepare to face this change. Practice at dealing with expected change can go some way to helping when the unexpected happens.
Bob:
Week-day to week-end mode – the script
This is a prime example of the kind of small change we are talking about. Most people would not even notice it, or if they did they would only look on it positively; but when you actually take into account the amount of change that happens from week-day to weekend, you can’t really call it a small change. So while it might seem like over-kill to read a script every Friday night, it is in reality a case of minimum effort for maximum result, as the old saying goes. This script will have to be changed for whatever your personal needs are – whether the child is off school/college, or if one or both parents are off work or maybe they work weekends. Bedtimes and food may change, different people will be around the house, perhaps, so when you are writing the script you will have to factor in all of these issues that are personal to you, but in principle it works the same. You will need to write down the things that will change from week to weekend; you can also use illustrations if this helps your child. Simply read it out to your child on the Friday night and maybe discuss it, and after a few weeks you may start to notice a profound effect. This technique is extremely simple to follow but also extremely effective.
Copyright © Jessica Kingsley Publishers 2012.