Intensive interaction by Sara M-J by Treating Autism

Intensive Interaction – my story by Sara, Tom's mum When we started Intensive Interaction with my son Tom (then aged about 7½) I honestly thought that I would only do it for a very short while. I thought it might help to make Tom a bit more reachable and then I could get back to doing a 'real' therapy. (We had been following an incredibly complex relationship programme with hundreds of individual objectives and a long period of parent training). By sharp contrast, Intensive Interaction is gloriously simple, very easy to do and relatively unstructured. BUT over the past year and a bit, I am continually shocked and delighted by the amount of learning and other wonderful things that happen through this beautiful, natural, free-flowing therapy. It just keeps on giving and day by day I watch my son transform into a more sociable, self-aware, confident, playful, loving, flexible, communicative and, above all, happier little boy. Background Tom regressed from around 15 months onwards and disappeared into a land called 'Autism'. It felt like he hadbeen kidnapped or had vacated his own body and left uswith an empty shell to feed and clothe, etc. Our house was silent and we were overwhelmed by his distance. We were devastated and utterly heart-broken and this was all compounded by bad experiences with the people being paid by the state to help us. I was desperate to get my baby back and I would have stopped at nothing to do so. I looked around for suitable therapies....

Before regression

How I chose therapies that didn't suit my son It seems obvious to me now but, to choose the best therapy for your child, it is essential to really understand After regression your child's problems and whether the therapy will address those particular issues. This is where I went wrong. I didn't listen to my maternal instinct screaming at me. I yearned for a warm, loving relationship with a communicative, sociable and playful little boy. I wanted to watch him develop through wonderful moments with me and others, through play, love, delight – all the things typical mums take for granted. I wish I had looked for a therapy to give me those things. I mistakenly thought autism meant this kind of natural development or learning was impossible. So I paid attention to the labels and problems identified in my child by others. My child 'was non-verbal', 'stimmed', 'didn't make eye contact', 'didn't request things properly', 'didn't know how to match pictures and objects', etc etc. With the latter problems in mind I started my son on a full-time behavioural programme (Applied Behavioural Analysis, then Verbal Behaviour, later Relationship Development Intervention). Treating Autism is run by parents of children with Autism entirely on a voluntary basis. Registered Charity No. 1113628. Company Limited by Guarantee Registered in England No. 5594787 Address: Treating Autism | International House | 221 Bow Road | Bow | London E3 2SJ www.treatingautism.co.uk

What most autism specific programmes forget.... During their first year neurotypical babies achieve the most complicated learning of their lives they learn more during this period than at any other time. The stuff they learn is vital for healthy or typical development. In fact, it is so essential that, if they do not learn it, they will probably end up with some sort of developmental delay/ SEN, simply as a result of not mastering this stuff. It is the foundation for all other learning. Yet, because this learning takes place at a non-conscious level, because we are so accustomed to it being achieved seemingly effortlessly, because the adult role in this learning is pleasurable, natural and also non-conscious, we are often unaware of it and its absolute importance. Here's an abridged list of what babies learn in their first year: the enjoyment of being with other people and seeing the potential of socialising; how to build relationships; a sense of self and self-worth, to be playful, to read and make facial expressions, to read and use body language, to share personal space, to take turns, to read and make a wide variety of eye contacts; to do sequences of activity with another person; to use vocalisations and much much more. Autism Perhaps more poignantly, much or all of this learning is impaired in people who have a diagnosis of autism. It can be impaired even in those who have some higher skills such as speech. It was severely lacking for Tom even though he was verbal. Often I.I. is used with non-verbal people but can be used for anyone needing this learning. Parents of children with autism sometimes express some sort of shock when they find themselves communicating/ playing with typical babies. It can be a nasty reality check and upsetting for us to see what babies are capable of and just how communicative they are. Many people are familiar with the Youtube video clip of toddler twins communicating playfully without words (see below). These non-verbal children have so many very sophisticated communication skills. They are turn-taking, vocalising and using and responding to complex intonation. They are reading each other's body language and facial expressions (and using body language and facial expressions at a sophisticated level). They are using and reading a complex array of eye contacts for different purposes (contrast ABA's “look at me”). They are sharing personal space, enjoying one another's company and being very very sociable. They are sharing 'jokes' and showing empathy. They are attending intently to one another. In fact, you can almost watch them making brain connections that will eventually lead to verbal conversation and other more advanced social communication skills (see twins here http://www.youtube.com/watch?v=_JmA2ClUvUY) Why other programmes failed Tom Imagine what these boys will go on to learn next. Much of what they will learn (speech, naming colours, number, matching, etc) will be what we tried to teach Tom before he had all the crucial foundational skills these twins have. Imagine the advantage these boys will have in this learning over a child like Tom who had none of their skills.

Treating Autism is run by parents of children with Autism entirely on a voluntary basis. Registered Charity No. 1113628. Company Limited by Guarantee Registered in England No. 5594787 Address: Treating Autism | International House | 221 Bow Road | Bow | London E3 2SJ www.treatingautism.co.uk

Tom's home-programmes prior to I.I. were not addressing the core of Tom's autism. Tom did actually learn some things (the kinds of things usually acquired after the first year in typical development and usually more consciously) through these therapies but they were further polarising his strengths and weaknesses. Because of the way in which the therapies were delivered, they also had detrimental unintended side-effects: he learnt that we disapproved of his choices, that we were there to put unending demands on him and that a relationship with us was a terrible thing. We gave him no alternative but to withdraw into 'Autism Land'. Through these therapies Tom became unhappier, more stressed, more distant – basically more autistic. It was hard to see the extent of his difficulties I think we autism parents see the potential that our children have very clearly. We experience moments when they do amazing things. We see glimmers of the real child within (which might disappear again) and this gives us great hope for their future. Children with autism have a spiked developmental profile and their strengths stand out to their parents. The professionals are more likely to see the full extent of the child's difficulties and disabilities. While this helps us parents to fight hard to achieve our children's true potential (professionals' aims tend to be less lofty) a side effect of this optimism, at least in my case, is that it can blind us to the severity of the difficulties our children experience and lead us to choose the wrong kind of therapy. It can also be incredibly painful to face up to the full extent of your child's disability. Also as Tom had disappeared so fast I thought I could get him back just as quickly. I didn't stop to think that children with disabilities need more time than NT children, not less. I saw Tom's potential. I knew he was clever. I knew the boy he had been before regression. I didn't see the severity of his difficulties. I didn't see clearly enough that he needed the skills that a baby has. (This is particularly hard for a parent whose child has acquired and then lost these skills). I didn't see that he needed lots and lots of time to think, process and learn. I didn't see how essential a great relationship with me was. But my child has many many skills way above baby level! Our children inevitably have many skills that are way more advanced than a baby and there is no suggestion that these should be ignored. In fact, by following your child's lead (although this is not all we do in I.I.) you will gain a truer sense of the full range of your child's abilities and, therefore, be able to give regard to his/her chronological age and all areas of his/ her development. But, if your child is missing out on this essential early communication and social learning, then it is a good idea to give more time to this than to anything else. Non-autism parents have 'all the time in the world' for their typical babies' development. They delight in their child and live in the moment without the urgent need to drive their babies' learning forward that we autism parents sometimes feel. Babies are given literally thousands of opportunities to rehearse their communication skills and to learn at their own pace (the perfect pace for them). These moments together are rich, fun, enjoyable and give the messages loud and clear to the baby 'You are a great person'. 'Your actions (choice of activity) are great'. 'I love spending time with you.' etc etc.

How Intensive Interaction is done (Please see 'Resources' at the bottom for various sources of further information)

I.I. is based on parent-infant interaction. No equipment is required. The main (often only) 'piece of equipment' is you, the parent (or other adult) but it can also be done around toys or other objects. You start by closely observing him/her to work out what s/he is doing and where his/her mind is focussed. Then you try to respond in various ways to some bits and pieces of his/her behaviour. You can also just join in the behaviour sometimes. This gives the messages: 'Your choices are good'; 'You are interesting'; 'We have things in common'; 'I like spending time with you'; 'You have value'. I.I. can be done as little or as often as possible and at first, each 'session' might only last a few minutes. Over time you build up a repertoire of enjoyable games and activities through which your child can rehearse the early skills normally rehearsed and acquired in babyhood. As your child begins to develop these skills sessions will grow in length and complexity and may eventually spill over into all interactions and can become a way of being/ communicating with your child throughout the day. Tom's childhood Although I believed that childhood should be a rich learning experience full of play and natural learning (as it should be for NT children), I didn't see this as a possibility for Tom. I feel guilty that he spent his early years doing a full-time behavioural programme and I would give anything to go back and change this for him. A mother's pain Intensive Interaction has the added benefit of being therapeutic for parents. I don't know why I didn't decide to go for counselling when Tom 'disappeared'. I was certainly profoundly affected by it. When I read Dave Hewett's chapter on parent-infant interaction with disabled babies (in 'Access to Communication' – see below), I cried so much I thought I would never stop. It was extremely In a VB session painful to read but was the best counselling I could ever have received. Finally I understood my own pain and felt empowered to set about 'fixing' my problems. Intensive Interaction has been a healing experience for me. The future of Intensive Interaction Intensive Interaction has been steadily growing in use throughout Britain and abroad since the 1990s because, I feel, it has hidden depths and gives much more than would appear possible at first. I think this is because it has tapped into what Nature has taken millions of years to perfect - the perfect beginnings for a human being's development and perhaps the essence of what it means to be human.

It is being used more and more widely for different target groups and in different contexts as more people discover its potential. However, it is clear that it has so much more to offer and will continue to grow exponentially. There is a move now to make this therapy more accessible to parents. A DVD for parents, a workshop for parents and a parent information pack will be available soon - check for updates on www.davehewett.com or email me (see below) so that I can inform you once it's released. The new “Intensive Interaction handbook” (see below) includes a chapter written about doing Intensive Interaction in the home. There will be a talk on Intensive Interaction for families at the next Treating Autism conference in London. (see www.treatingautism.co.uk for updates) My final thoughts on Intensive Interaction Although Tom still very much qualifies for a diagnosis of autism, he is back! The boy who used to prefer to be alone in another room is now playful and attention seeking. When I am trying to do dishes, for example, Tom constantly interrupts, wanting to play with me or show me what he's up to. This was absolutely unthinkable a year or so ago. We are very close now – a year ago I was depressed about our relationship. Enjoying Intensive Interaction with me The sessions with his therapists are filled with games and laughter. Out of the house, Tom's greatest fear – children – are now a source of interest. He names some of them regularly, asks for them, tries to (with not much success yet) interact with them and tries to join in their games. The hidden depths of I.I. for me have been that, the more Tom learns, the more he learns! In other words, progress was slow at first when Tom really lacked these skills and we had difficulty even connecting. But as Tom grows and acquires skills, our games and interactions become more and more sophisticated and the amount Tom learns in a session gets bigger and bigger. And it's not just Tom or children like Tom, Intensive Interaction does so much for so many people, including reaching out to adults who may have been isolated all their lives. It is an inclusive and deeply caring therapy. It has the added benefit of removing barriers for both parties involved and parents, grand-parents, siblings, teachers and other people who care can also experience the joy of the new connection. Intensive Interaction has healed my own personal pain as a mother and has given me back my baby. I now have much greater hope for his future thanks to this therapy. I really want to get more involved with Intensive Interaction and so I am currently undergoing training as an Intensive Interaction coordinator. Please email me (see below) with any questions or comments you may have. Sara Treating Autism is run by parents of children with Autism entirely on a voluntary basis. Registered Charity No. 1113628. Company Limited by Guarantee Registered in England No. 5594787 Address: Treating Autism | International House | 221 Bow Road | Bow | London E3 2SJ www.treatingautism.co.uk

How to get started/ Resources • Contact me anytime. I'm Sara. I'm an autism mum and a trainee Intensive Interaction Coordinator. I also volunteer for a biomedical charity – Treating Autism – biomedical interventions have played an important part in Tom's progress. If you have any questions about my story, about I.I. or anything else at all you'd like to ask me, please contact me through Treating Autism's email mail@treatingautism.co.uk and mention that the email is for Tom's mum, Sara. Our website address is www.treatingautism.co.uk • Yahoo discussion group for parents using Intensive Interaction with their child http://health.groups.yahoo.com/group/IntensiveInteractionParents/ • Upcoming one day Intensive Interaction courses run by Dave Hewett http://www.intensiveinteraction.co.uk/courses-events/intensive-interaction/programme.html •

General I.I. Information on Dave Hewett's website www.davehewett.com

• Parents' DVD and information pack, available soon on Dave Hewett's website www.davehewett.com •

Parents' course, available soon www.davehewett.com

• Facebook page for Intensive Interaction users https://www.facebook.com/groups/13657123715/ • The Intensive Interaction handbook with a chapter written for parents (available on Amazon) http://www.amazon.co.uk/Intensive-Interaction-Handbook-DaveHewett/dp/0857024914/ref=sr_1_1?ie=UTF8&qid=1330864121&sr=8-1 • For the chapter mentioned above on parent-infant interaction with disabled children read “Access to Communication” (also available from Amazon) http://www.amazon.co.uk/Access-Communication-communication-disabilitiesInteraction/dp/1843121840/ref=sr_1_fkmr0_1?ie=UTF8&qid=1330872069&sr=8-1-fkmr0 This document is the intellectual property of the author and may be shared only if left unaltered and in its entirety with credit given.