Things To Celebrate

March 2016 002My presentation at last week’s National Autistic Society conference seemed to go well I’m pleased to say. I will share a summary of it, and some reflections on the conference more generally, very soon. In the meantime I have two pieces of news to share.

Firstly, I am delighted to report that Dylan started an ASDAN qualification in Horticulture yesterday. Isn’t that marvellous? I have mentioned, in previous posts, how much Dylan enjoys working with the activities coordinator in the social enterprise shop at his  home. This has become a very positive aspect of Dylan’s programme and it’s fantastic that the work Dylan is doing is being recognised in this way.

In my conference presentation last week I referred to my attempts, when Dylan left school, to secure post-19 education provision for him. It seemed to me that, in my area at least, the developing agenda around community-based autism services had created a situation which was working well for some individuals but had nothing to offer to others. This seemed, in general, to divide around what is sometimes referred to as ‘high and low functioning’ adults (terms I dislike).

So many people, at the time, were of the view that education was not possible, or even appropriate, given Dylan’s intellectual disability and limited communication. I should focus instead, I was told, on identifying social care provision for Dylan. By the time the Local Authority had accepted their obligation to provide education services to autistic adults with complex needs, Dylan was too unsettled to access such provision. It is ironic, perhaps, that it is through a residential setting  – a model of provision which some people argue should be phased out – that Dylan has finally been able to access the education which is appropriate to his needs and from which he can benefit.

I have always argued that the challenge, in the aftermath of the Winterbourne View scandal, is to ensure residential settings for adults with disabilities are excellent rather than to close them down. While community-based support will be an infinitely better option than residential care for some adults (providing it is properly resourced) there will always be others for whom residential services are essential. Our task, surely, is to identify what the key factors are in the development of excellence in relation to residential settings for autistic adults?

When parents and relatives visit a prospective home for autistic adults they try to make careful judgements about the setting. Is this a safe place? Is it a happy home? Are the residents purposefully engaged and well-supported by trained and caring staff? Such judgements can be difficult to make, however, and parents receive little support with the decision. We do our best but, inevitably, worry about whether this will be good enough.

2Happily I’ve never doubted that the home I eventually chose for Dylan was the best that could be. Even so, it was fantastic to receive independent confirmation of this at the weekend: Dylan’s home, I am delighted to say, has been judged ‘outstanding’ in a CQC Inspection. It’s a wonderful acknowledgment of the time, effort and care the staff and management invest in Dylan and the other young people at the home.

*

The pictures of Dylan are from the Home’s February newsletter to parents. They show Dylan working on the firebrick stand he has been making as part of his woodwork project.

 

Autism And The Alphabet: Dylan and the ‘W’

Munch 003My last couple of posts have focused on Dylan’s love of paintings and my attempts to understand the role of art in his life. In order to do this I identified imagery which Dylan seems to respond to and constructed a therapeutic narrative around it. A comment on my last post, however, reminded me that I was making assumptions about Dylan’s viewing. How could I be sure Dylan was responding to the images in a painting? Perhaps he was attracted by the light or by a picture’s lines?

My initial reaction to the question ‘why don’t you ask Dylan what he likes about the paintings?’ was that I couldn’t. He (I mean we) don’t have the language. But the question set me thinking. Maybe Dylan was indeed gazing at darkness rather than thinking ‘rock’, or enjoying the quality of contrast rather than the thing I call ‘a cross’. I convert the light and the dark, the colours, shapes and lines to concrete nouns for Dylan but perhaps what he likes about the paintings aren’t the things I give him words for.

Maybe I need to view Dylan’s paintings with the part of my brain which sees spatially instead of with language. Rather than labelling objects in a painting I could offer Dylan the spaces and shade. Such an approach would fit with what I have already learned about the way he sees the world. Elsewhere I have described how Dylan sees hair on trees instead of leaves and tells me that the cheese is crying when I melt it. I have suggested that Dylan’s lack of language might allow him to experience phenomena more intimately and intensely than I am able to because he uses his senses rather than these inadequate words. Dylan’s perception of the world, I have speculated, may be right-brained whereas mine is left; where I see ‘curtain’ Dylan might see silver light spilling from a vertical edge.

See saw

W 005I must have been thinking about this a few days later when I picked up a magnetic letter from Dylan’s bedroom floor. Because I was about to say ‘Oh look Dylan there’s a letter’ or ‘look here’s a W’ when I remembered Elisa’s question ‘Why don’t you ask Dylan what he likes about the paintings?’. Could I be open-ended about the W? Could I ask Dylan what I had found on the floor?

Oh look. What’s this Dylan?

See saw

I stared at him in shock. Then I asked again.

See saw

You should have seen my face 🙂 I cracked such a grin. What a gift. Dylan sometimes hands me these, unasked for, but I might never have received this one if I hadn’t asked the question that way. The see-saw was my first open-ended gift.

Seeing W

wikipedia.orgDylan’s magnetic W is the same shape as the version produced by a keyboard: not actually ‘double U’ (as the letter is pronounced in English) but rather ‘Double V’ (as it is pronounced in French). Although this version of W is commonplace today, when I was a child it had curves not angles. In handwriting lessons we were taught to practice forming our Ws by joining Us together and moving our hand briskly and freely across the page, line after line.

UUUUUUUUUUUUUUUUUUUUUUUUUUUUU
UUUUUUUUUUUUUUUUUUUUUUUUUUUUU

Just like Dylan I made letters into pictures. My friends and I thought we were terribly risqué when (collapsing in giggles) we decorated our UUs with squiggles and dots to turn them into bottoms and bosoms. Perhaps I didn’t see a see saw because of the cursive way we wrote our Ws but I can’t help thinking that had I looked carefully – as Dylan does – I might have seen a swing boat.

Hearing W

publicdomainpicures.netAs well as the mismatch between the visual ‘W’ and the heard shape ‘UU’ I encountered other problems with this letter as a child. I remember sitting on the back step of a friend’s house on a warm day one long school holiday. We had got the writing bug and were sitting in the sun with paper and pens. I don’t know how old we were – perhaps seven or eight, maybe a little older. I remember my friend asked her dad, working in the drive nearby, for a spelling.

How do you spell daffodil?

D- a- double f – o – d – i – l

I had never heard anyone use the ‘double letter’ device before. I remember I felt anxious about the letters I had heard but didn’t have the confidence to ask my friend’s dad to repeat them. I did my best but something seemed wrong with my word:  Dawfodil. It looked a bit odd. I wasn’t going to question my friend’s dad though.

Suddenly he was hovering above me, looking down at my page: ‘What have you got there?’, he asked, ‘Why have you written a W?’ He had said W I told him. He checked his daughter’s writing; she hadn’t made the same mistake. My friend must have heard the double letter expression before but it was unfamiliar to me; I had assumed a letter with a ‘double’ sound in it meant W. Afterwards I would use the double device triumphantly and often:

M – i – double s – i – double s – i – double p – i

I’d do well to remember the confusion and anxiety I felt about my dawfodil though; it might help me understand just a stamen of being Dylan.

Teaching W

W 003Because the names, shapes and sounds of letters aren’t intuitive or easy, attempts have been made by practitioners and publishers to develop teaching resources and methodologies. Whether or not these help probably depends on an individual child’s learning style. A kinaesthetic learner, for example, might respond to the Steiner approach to learning the alphabet through music, movement and drama. This method involves children physically taking on the attributes of each of the letters of the alphabet and embodying learning through the senses. The magnetic letters which I use with Dylan are also aimed at children who learn through their senses as they can be experienced by touch and smell as well as sight.

amazonw2As a phonetic method the commercial resource Letterland focuses primarily on sound. Available in a range of formats (jigsaw, books, video etc) it works through the association of each letter with an alliterative character (human or animal). So, for example, C is Clever Cat, J is Jumping Jim and W is Walter Walrus (though when my children were small it was Wicked Water Witch). Many children respond well to the Letterland alphabet – I remember my step daughter liked it and it really did seem to help her developing literacy. It doesn’t suit every child though; my daughter was lukewarm about it and it never held any interest for Dylan. Now, perhaps, I can understand why; Dylan doesn’t hear a Walrus, he sees a see saw.

Just as I put a  ‘w’ in daffodil because I thought I heard one, perhaps Dylan visualises see saws in words with w:

Yelloseesaw [Yellow]

Seesawonderseesawall  [Wonderwall]

Seesawindoseesaws  [Windows]

I have been wondering what else Dylan sees in the letters of the alphabet. One day I will ask him but not all at once as it would overwhelm him. I’ve tried to guess though – O could be wheel perhaps:

Twheelwheelkit  [Toolkit]

Wheelseesawl  [Owl]

Mwheelther  [Mother]

W 007Looking again

If Dylan sees letters as objects unconnected with the sounds they represent then it must be very hard for him to make sense of letters as signifiers. To my knowledge the only group of letters Dylan recognises is ‘Dylan’ and this is because he has been exposed to them as a sequence rather than as individual characters. What might be the implications for supporting literacy development in children and adults with autism and learning disability? Based on my limited observations of Dylan I would hazard that for some young people the ‘look say’ method might be a more appropriate approach than a phonetically-based system. Learning words certainly seems more effective than learning letters for Dylan and if I had his early years again this is probably what I would focus on. Then again, that way I might have missed the see saw…

W 014

Images:

The daffodils are via publicdomainimages.net; the swingboats are via wikipedia; the Letterland book is via Amazon and the other photos are taken by me. The picture of Dylan on a seesaw (aged three) was taken in France in 1997.

Ways Of Learning: examples from a home education programme

books etc 016In my last post I reflected on a home learning programme which I undertook with Dylan in the years immediately following his autism diagnosis. In that post I referred to a framework for home learning described by Aboucher and Desforges:

reading, library visits, playing with numbers and letters, playing with shapes, teaching nursery rhymes and singing.

In this post I provide examples of Dylan’s home-based learning within each of these categories. Although Aboucher and Desforges’ framework is not based on a specialist learning environment I think it is equally applicable for an autistic child with a learning disability. As the examples illustrate, however, flexibility is required when interpreting the categories.

a) Reading/library visits

Although Dylan doesn’t ‘read’ he has always loved books. Below are some ways in which Dylan engages with literacy-based activities and my reflections on their possible value.

  • WP_20150107_09_12_58_ProReading the same book for weeks on end. I used to try and move Dylan on to other texts but later realised that this repetition suits Dylan’s learning style and builds his confidence.
  • Reading multiple copies of the same book. I have speculated on possible reasons for this here.
  • Reading the same page in a particular book. Dylan keeps favourite books open at ‘special pages’. At home he keeps these close at meal time and bath time. I imagine that these pages are comforters for Dylan or that the characters on the page are real to him and are his friends, sharing Dylan’s key activities.
  • Turning the pages of a book rapidly, usually from back to front, sometimes while looking away or with eyes closed. I imagine Dylan might be counting or playing memory games.
  • Carrying books around without opening or looking at them. There are eight books which go everywhere with Dylan. Dylan doesn’t look at these outside the house; sometimes, when we are in a cafe, I might say ‘why don’t you have a look at one of your books Dylan?’ But he never wants to. Dylan has the books with him not as we might, in order to read at opportune moments, but as comforters perhaps, or because they are friends, or he enjoys their weight.
  • books etc 007Using books as objects, for example to sit on, lick, or wear on the head. Dylan’s sensory and physical relationship with books as artefacts is a valuable part of his developing literacy. Dylan accepts my standards of care for library books, I think, because he has his own copy of favourite books (which I accept will become wet, dirty and torn).
  • Reading homemade books. These can be quite simple: scrapbooks, for example, laminated pages or inserts in plastic sleeves of an A4 folder. The books can have a narrative arc (for example ‘using the toilet’) but more often the books I made for Dylan were simply pages of things which I thought would interest him.

For Dylan ‘reading’ is usually a private activity. This was hard for me to accept, initially, as my expectations and instinct about early literacy were that it should be shared. In time I learned to give Dylan the space he needed however. I developed the following techniques for offering support:

owl babies~ sitting silently next to Dylan with my index finger held out (I discovered that Dylan would take my finger and point to something in the book if he wanted me to name an object or clarify something);

~ sitting next to Dylan offering a simple commentary as he turned the pages (talking about the book rather than reading the narrative);

~ sitting at a distance ‘modelling’ reading by turning the pages of a book and using simple language (‘Percy sad’);

~ memorising some of Dylan’s favourite books and speaking these to Dylan at various times of day. In time this triggered him to fetch the book.

There are now a few books which Dylan will allow me to read with him. It is always important, however, that I let Dylan take the lead, e.g. selecting the text and setting the pace for me to read as he turns the pages.

b) Numbers and letters

books etc 005Numbers and letters are abstract symbols. Some children with an autistic spectrum condition are comfortable with this and demonstrate a facility for mathematics or for learning foreign languages. This is not the case for Dylan, however, for whom numbers and letters as symbols have never appeared meaningful.

At 20 Dylan will identify marks on a page as ‘why-ya’ (writing). He will also tell me that I am ‘why-ya’ if he sees me with a pen or pencil and piece of paper. Interestingly, however, if I am typing at a keyboard he will not identify this as ‘why-ya’ but rather ‘poo’ (computer) which he sees as a different activity entirely. I’m not sure if Dylan connects letters with communication (i.e. whether or not he understands the link between reading and writing). I am even less sure that Dylan associates number symbols (1,2,3 etc) with the thing(s) they represent. Dylan doesn’t have a word for ‘numbers’ and hasn’t ever told me that a symbol is a ‘number’ in the way that he has identified marks on a page as ‘why-ya’. I suspect that, for Dylan, numbers and letters amount to the same thing: abstract marks on a page.

I did a lot of fairly conventional number and letter work as part of Dylan’s home learning programme when he was young. Mostly this involved me trying to teach Dylan to sequence numbers and letters and to copy them. Dylan did not enjoy this work and never showed any real understanding of it. If I had my time again I wouldn’t bother. I continue to try and develop Dylan’s awareness of numbers and letters through alternative approaches, however. Activities which Dylan seems to enjoy and which have had some impact include:

  • books etc 006Counting things in pictures (the windows in Ulm cathedral is a favourite activity) through chant and point. Whenever Dylan pays attention to something I look for objects we can count, e.g. ‘let’s count the stars’.
  • Playing dominoes (this may be more about matching the shape of the dots than about number but I try to enforce the number link by counting dots when we play).
  • Focusing on meaningful sequences of numbers and letters rather than abstract sequences such as the alphabet. The  sequences of letters which Dylan recognises currently are D-y-l-a-n and (possibly) m-u-m. It has taken many years of exposure to the letters in Dylan’s name for him to recognise them. Even now I don’t think that Dylan ‘reads’ his name; he likes pointing to the letters on his door and for me to chant them, but he is as likely to indicate them in reverse order (but get cross if I sound them out backwards).
  • Gradually replacing familiar pictures with letter sequences. I tried doing this as part of Dylan’s home learning programme by blanking out some of the pictures in his ‘red book’ and in lotto games. On reflection I tried this too early. I should have allowed more time for Dylan to feel confident communicating with photographs, pictures and symbols before moving him onto letters. Attempting letters too early created a sense of failure in Dylan and frustration in me (or perhaps vice-versa). My sense is that Dylan is only now moving into the symbolic stage of communication; I have had some success this year with makaton signs and symbols and have therefore recently introduced the sequence m-u-m.
  • books etc 002Introducing numbers and letters in a naturalistic and comfortable setting. I have introduced m-u-m on Dylan’s visual timetable board because it’s an object which is important to him, that he is comfortable with, and which he interacts with on a daily basis. For other children and adults this might be DVDs, i-pads, the fridge door etc.
  • While technology supports some children to develop an awareness of numbers and letters, Dylan doesn’t seem to recognise word processed text or screen-based letters and numbers. Dylan’s learning style is kinaesthetic; he needs to hold a physical letter or number in his hand and engage with it as an object. For learners like Dylan, play letters and numbers are important for years beyond what might be considered ‘age-appropriate’.

c) Shapes

wikipediaI did ‘shape work’ with Dylan as part of his home learning programme but am fairly confident that he still doesn’t recognise the words ‘square’, ‘circle’ or ‘triangle’. And who cares? Is it going to make his life any less rich? Does it matter if he doesn’t know the word to describe a shape? As with letters and numbers, Dylan needs a physical object in his hand to recognise the shape of it. I’m sure that he has an intimate understanding of a triangle; if I put one in his hand he would explore it with all his senses (especially if it was a piece of Toblerone). But he wouldn’t recognise the name for it. And he wouldn’t push it into a ‘shape sorter’ with any enthusiasm or success. In fact I used to think Dylan tried to push shapes into the wrong holes deliberately, for a laugh.

books etc 009Autistic children have good visual-spatial awareness and it is generally assumed that they therefore enjoy doing things based on these skills such as jigsaws. Dylan, however, doesn’t show any enthusiasm or particular ability for jigsaws. I have never been sure whether this is because he finds them difficult or because he finds them boring; although mostly Dylan doesn’t complete jigsaws, sometimes he surprises me by showing that he can. Actually I’m with Dylan on this one; I’ve always found jigsaws fairly pointless. Nonetheless I scheduled them in Dylan’s home learning programme because I thought I should. On reflection it was a waste of time; there were plenty of other things we could have been doing. Some of the activities I did (and still do) with Dylan which develop his visual-spatial skills and which he enjoys include:

  • Matching games. It is easy to make lotto games of objects which your child is particularly interested in or of new vocabulary which you want to teach. While this isn’t about ‘shape’ as such, it is about pattern recognition which involves the same cognitive processes.
  • Flash cards. A deck of cards is tactile and comforting; you can shuffle, sort, browse, deal, distribute, drop, pick-up, check, lose, duplicate and throw away. So many wonderful possibilities. Dylan liked cards. I probably didn’t exploit this interest as much as I could have.
  • Found shapes. As a writer I love to stumble on poems which exist without having been written: the found poems we encounter if we keep our hearts and minds open. And shapes are even easier to find than poems; food is a great place to look (I’ve already mentioned Toblerone) as is the great outdoors. I am currently working on pointing shapes out to Dylan in the hope he might make the links between them and recognise the abstract concept of ‘triangle’ as something which applies equally to a piece of chocolate and a road sign.

d) nursery rhymes and singing

education reflections 055Some of Dylan’s most effective exposure to language has been through musical resources; I suspect this is because nursery rhymes and songs use devices such as chorus and repetition which create the pattern and structure which Dylan responds to. Although Dylan has an ambiguous relationship with singing due to his auditory sensitivity (I have written about this here and here) music has been one of the most important things in his life and seems increasingly significant as he gets older.

Nursery rhymes and singing are used in early years education not just because of their intrinsic value but as a vehicle for learning. They can support the development of pre-lingual skills such as turn-taking and imitation as well as developing social awareness (for example emotional understanding) and cognitive knowledge (for example in relation to literacy and numeracy). While I realise this raises issues around age-appropriate activities (which I have reflected on here) I continue to engage Dylan through nursery rhymes and singing on a daily basis. Some approaches which I have found particularly useful include:

  • music 029Making compilations of nursery rhymes and songs for Dylan on key themes to support specific learning (e.g. ‘parts of the body’ or ‘counting’)
  • Putting nursery rhymes on Dylan’s i-pod so that he can listen to them privately and when out and about in the community (I have written more about this here)
  • Encouraging Dylan to listen to nursery rhymes as part of a bed time routine (I think Dylan has learned a lot from his years of routine listening)
  • ‘Embodying’ nursery rhymes through actions: some of Dylan’s favourite nursery rhymes, and the ones he seems to learn most from, are those with accompanying actions.
  • Exaggerating actions to nursery rhymes in order to emphasise communicative purpose.
  • Making changes to the words of familiar nursery rhymes so that Dylan accesses meaning as well as sound. My daughter, for example, changed ‘one potato, two potato’ into ‘one banana, two banana’ one day, changing the shape of her hand from a fist to a flat curve. Dylan found this hilarious and still enjoys changing potato to banana.
  • Exaggerating singing of nursery rhymes in order to emphasise features of language such as stress, intonation, tone and pitch.

Final reflection: the importance of language

independence 016What makes the education system fundamentally inaccessible for many children is the role of language in the delivery of the curriculum. A key challenge for parents and educators is therefore how to make learning accessible for children who do not speak or use an alternative communication system. Dylan is currently developing some echolalic speech but for the majority of his life, and throughout his schooling, has been classed as ‘non-verbal’. It is perhaps not surprising  that so many of the suggestions in this post focus on language development; it is in its potential for adaptations to language, I suspect, that a home learning programme may be of particular value.

Reference:
Desforges P. and Aboucher, A. (2003) The Impact of Parental Involvement, Parental Support and Family Education on Pupil Achievement and Adjustment: A Literature Review. Queen’s Printer: Exeter

Images:

The images of Owl Babies and the Toblerones  are from Wikipedia. The opening photograph of Dylan reading Postman Pat was taken during a holiday in France in the late 90s, at the time of Dylan’s home education programme. The closing photograph of Dylan at a climbing centre (holding a copy of Pinocchio) was taken just before Christmas 2014.

Education-Based Intervention In Autism: Dylan’s home learning programme

education reflections 005In a previous post I reflected on the pressure which parents can feel under to take action in the aftermath of an autism diagnosis; early intervention, we are told, can play a critical role in future outcomes. Following Dylan’s diagnosis 18 years ago I trialled a long list of therapies. These interventions, I suggested in my earlier post, could be categorised as sensory; dietary and medical; behavioural; and educational. This is the last in a series of posts reviewing these approaches in turn.

Orchestrating interventions

No single approach is sufficient in itself and I doubt there are any parents or professionals who focus exclusively on one of the four categories of intervention I identify above. The question, for most parents, is the balance between the categories and the way as education reflections 008caregivers and educators we orchestrate them. In my introductory post to this series I identified some of the factors which impact on our choice of therapy: the child; parental values; the available resources; and the ‘dominant discourse’ abut autism at the time. As well as influencing our adoption of individual therapies, these factors affect the way we combine them.

One hypothetical parent of a pre-school child, for example, may opt for a gluten and casein-free diet with sensory-based interventions such as weighted blankets, massage, music therapy and gross motor activities. Such a parent may adopt a non-directive approach, preferring not to use behaviourist interventions or to offer their child formal education. Another hypothetical parent, meanwhile, may focus on the re-shaping of behaviour through a programme of rewards and reinforcers based on behaviourist education reflections 009philosophy. Such an intervention would include educational input as behaviourist approaches are used to facilitate cognitive as well as social learning; the framework for the educational content, however, would be social.

The two hypothetical parents in the above examples are a bit stereotypical. While it is often the case that a family opting for a behaviourist programme will place less emphasis on sensory approaches it is possible to mix and match eclectically from the four categories. To a large extent this was the approach I took with Dylan. However, as my earlier posts in this series indicate, the different interventions map onto distinct sets of ideas so choosing a particular intervention also involves adopting a particular philosophy.

Why education?

education reflections 012The four categories of intervention activity are underpinned by philosophical ideas because they align with academic disciplines and thus with theory as well as practice. Sensory interventions, for example, draw on ideas from Occupational Therapy while behaviourism is based on theory from Psychology and dietary and medical interventions align with disciplinary fields such as biochemistry and neuroscience.

As an academic discipline as well as a field of practice, education offers activities underpinned by theories about learning and child development. Given my work as an educator, this was a comfortable place for me; the language and philosophy felt familiar even in the transformed landscape of an autism diagnosis. After half-hearted trials with other interventions, and an abandoned attempt at a behaviourist programme, education was therefore what I chose.

Parent and educator

Initially I proceeded by instinct, aware that my assumptions about teaching and learning could be a burden rather than an asset when working with Dylan: in order to become a better educator I had to do what I asked of my students and unlearn some of my beliefs about education. Although I tried to bracket my professional experience I did draw on some practices from the workplace such as systematic planning and recording. I probably didn’t realise at the time how useful this was but looking back I can see that the framework it provided was helpful for me as well as for Dylan.

It isn’t easy for a parent to take on the role of educator. The most significant challenge I faced was without doubt my ability to cope emotionally. The inevitable frustrations and setbacks can be hard when you are emotionally involved with the child. You cannot walk away from the situation at the end of a difficult day. It can be harder to evaluate learning objectively; sometimes I wore rose-coloured spectacles and sometimes dark lenses. Furthermore, the potential for confusion of role between mother and son, teacher and child, presents particular challenges in the context of autism.

It is perhaps not surprising that many parents prefer to employ people to work with their children – indeed, this is recommended by behaviourist programmes. This wasn’t an option for me however; finances didn’t stretch to employing assistants for Dylan. Besides, I argued to myself, I had the necessary skills as well as instinct.

Intervention by instinct

education reflections 053It was by instinct, however, that I developed what I called ‘video teaching’. I’m not sure whether it was original (probably not) but I came up with it one night, alone and restlessly awake, praying for a good idea by morning. Dylan would have been around four years old at this point and his love of video was already clear. The only time Dylan was still was watching Pingu, Postman Pat or Thomas the Tank Engine. He would sit on a cushion in front of the television, periodically flapping his hands or making an excited ‘shushing’ noise with a little tremble of his head. However often Dylan watched, he was always engaged; this, I thought to myself, was the focus I needed.

education reflections 057It was the late 1990s, before the introduction of digital technology. Fortunately I had access to recording equipment at work so one holiday I borrowed a large, heavy camera. With the help of my six year old step-daughter, husband and mum I made ‘home teaching videos’ for Dylan. These involved flash cards and objects in real life contexts. In one scene, for example, my mum held a fork and flashcard in her hand while saying: Fork Dylan. It’s a fork. F-O-R-K. Fork. Then she mimed eating with the fork. Having the flashcard and the object, and hearing the word pronounced repeatedly, was an attempt to engage Dylan as a visual as well as an aural learner. It also allowed for the possibility that although Dylan didn’t speak he might be able to read (this hasn’t turned out to be the case).

Dylan loved the videos; he would happily watch them through over and over, seeming to enjoy seeing familiar people and objects on the screen. I’m not sure how much Dylan learned from the videos – he almost certainly didn’t engage with the flashcards and at 20 still struggles to recognise some of the vocabulary – but I think they were worthwhile nonetheless. Video teaching taught me that a home learning programme is a good way of involving the wider family (my step-daughter had great fun making the videos). It also demonstrated to me that Dylan could focus if I developed materials which were engaging and in a format with which he was comfortable.

The home learning environment

education reflections 062As well as instinct I drew on approaches to working with autistic children which were current at the time. I used ‘start-finish’ baskets as advocated by TEACCH programmes, for example. Although I had rejected behaviourism for Dylan I borrowed the approach to pace and rhythm adopted by the PEACH programme; working in short bursts seemed appropriate for Dylan and chunking up the sessions provided me with a robust structure when planning. I also borrowed some instructional techniques and based Dylan’s work space on a mash-up of TEACCH and PEACH; eclectic, but so what if it worked?

education reflections 054At the time, my focus was very much on finding alternative ways of working with Dylan. I didn’t believe the child development manuals had anything to offer us and the school curriculum seemed irrelevant. As far as I was concerned, what I had to do with Dylan was utterly different to the approach I took with his neurotypical sister. When I worked with Dylan I felt as if I was somewhere otherly and without a map; I was, I thought, a cartographer.

Marking a student’s essay recently, however, I read something which gave me pause for thought. Aboucher and Desforges, my student informed me, describe a Home Learning Environment (HLE) as one that is made up of:

reading, library visits, playing with numbers and letters, playing with shapes, teaching nursery rhymes and singing.

education reflections 028I read the list of activities (which relate to any home learning rather than specialist provision) several times. What struck me is that it was a perfect description of my current life with Dylan; in the course of a week, we do all of these things. There is a sense in which time stands still, or moves slowly, when living with autism; at 20, Dylan is rehearsing many of the same skills he was at five. I fetched my crate of home education resources from the cellar and looked through them; the early intervention activities I did with Dylan fitted the Aboucher and Desforges’ framework well.

education reflections 049I probably didn’t do anything different with Dylan 16 years ago, in terms of focus, than an early years educator would do with any child. What was different, however, was the way in which Dylan engaged with the books, numbers, letters, shapes, nursery rhymes and singing. In a linked post I provide illustrations which, as well as demonstrating the role of a HLE in supporting an autistic child, offer practical ideas for parents within the categories identified by Aboucher and Desforges.

Hindsight standing still

education reflections 050If the activities I do with Dylan haven’t changed in the last 16 years happily I have; I can still enjoy that wonderful thing, hindsight, while standing still. And if I had my time again I would do some things differently; I would, for example, focus more on interventions based on OT (an earlier post describes activities I think particularly helpful). While I did fine motor work with Dylan (cutting, threading, shape sorting) I probably didn’t place enough emphasis on physical activity. There was only limited understanding, at the time, of sensory profiling; of the various developments in the last couple of decades I would say that our knowledge of sensory issues has made the most significant difference to the support we can offer our children.

education reflections 055In the introduction to this post I restated the four factors I believe drive decisions about intervention: the child, the parent, the available resources and the dominant discourse. A better understanding of Dylan’s needs when he was diagnosed might have led me to adopt a sensory-based approach to early intervention. While my choice of intervention may not have been sufficiently focused on the child, however, neither was it driven by prevailing discourses at the time; I rejected the use of behaviourist and dietary/medical interventions as a potential ‘cure’ for autism. While I’m not uncomfortable with my decision to focus on educational intervention following diagnosis, Dylan didn’t benefit from my HLE in the way I had hoped.

On reflection, the decision to focus on educational interventions was based on my needs not Dylan’s. While working intensively with Dylan developed my practice, Dylan didn’t acquire the skills I had intended. Early intervention, it turned out, would bring about changes in me, the parent, rather than in the child. In the years since, I have wondered if the transformation of parental attitudes and beliefs is the main value of such initiatives. This surely is invaluable? A child’s parents are his or her greatest resource and time invested in the relationship is, perhaps, the mother of all interventions.

Reference:

Desforges P. and Aboucher, A. (2003) The Impact of Parental Involvement, Parental Support and Family Education on Pupil Achievement and Adjustment: A Literature Review. Queen’s Printer: Exeter

Images:

The images in the post are examples of my early planning and recording, Dylan’s ‘work’ from the time and pages from his ‘red book’, a resource I developed to support the home education programme.

Thank you for supporting our blog in 2014

Best wishes for 2015

Liz and Dylan

🙂

Autism And Friendship: learning from Dylan

I’ve had cause to reflect on friendship recently, partly triggered by Dylan’s social life and partly by an event in the workplace which left me with some questions. In this post I apply my reflections on Dylan’s relationships to the neurotypical world and suggest ways in which we might re-think ‘friendship’.

Ruby*

Dylan July 13 003Last week I took Dylan to the 21st birthday of a young woman he has known since primary school. Dylan and Ruby have grown into beautiful young adults, I thought to myself as I watched them at the party. Ruby had opted for a disco buffet for her celebration. It was a perfect choice; there is nothing like food and dancing to bring together men and women, old and young, family and friends and the autistic and neurotypical.

Dylan’s dancing style is centrifugal; he and I spun each other around, jumping and hopping in ever-increasing circles. I don’t know what Ruby made of Dylan’s dancing but I figured it might be pretty similar to the way I looked at men at discos when I was her age. She can’t have thought it too awful though as she let her mum dance with Dylan for a while.

As well as dancing Dylan took the opportunity to be wine waiter. He held tightly to a bottle of wine, pouring large glasses and doing ‘chink chink cheers’ with whoever was willing. He also enjoyed the buffet. When my back was turned Dylan removed and ate all the sausages from the sausage rolls, leaving the pastry cases in perfect curls on the plate. I suspect he ate all of the chicken nugget supply. For Dylan, this was the ideal party: there aren’t many places you can steal sausages, play with wine and dance like a dervish.

Dylan and Ruby haven’t always been comfortable sharing their space. Over the years there have been a number of altercations and they have sometimes needed separating. If I got a phone call from school to say Dylan had been involved in an incident I would automatically ask ‘and is Ruby alright?’. They could still annoy each other I’m sure – indeed we had to abort a walk which set off on the wrong foot recently – but, happily, having Dylan at the party was a success.

Stepping stones and splash holes

party time 005Dylan doesn’t get to go to many parties. When he was young I organised birthday celebrations at autism-friendly venues such as soft play centres. In time, however, I realised these were not enjoyable experiences for Dylan. Birthday parties are stressful; as well as the challenge of the environment and disruption to routine, guests are noisy, unpredictable and annoying. Dylan much preferred to celebrate his birthday with a family meal at a quiet pub.

Dylan, like many young people with autism, likes to spend time alone. If I arranged for other children to come to the house he would spend the whole visit in a state of anxiety. Other autistic children would go through his DVD collection and toys, interfering with his careful ordering and disrupting his environment. They would want to watch a film which wasn’t on his schedule for the day. Even if they chose the right film, Dylan doesn’t like watching with other people in the room. While generally tolerant of the children he was alongside at school, he didn’t want them in his space at home.

Once I’d realised this I stopped organising such ‘opportunities’. Why impose my ideas of what is appropriate on Dylan? He didn’t want to do play dates. As Dylan entered his adolescent years I discovered that he could tolerate contact with peers for selected activities. A walk in a local valley in the company of a young man Dylan had been at school with was fine, for example; although they didn’t walk together they walked in a similar manner to the same route and destination. Similarly Dylan was quite happy with an occasional picnic trip with Ruby to a bend in the river where they could play separately on the stepping stones (Dylan) and in the splash holes (Ruby).

Ella

Easter 2014 034It’s hard, as the parent of an autistic child, to know how best to support peer group ‘friendships’. While I didn’t want to put Dylan in situations he found stressful, neither did I wish to write off the potential benefits of peer group contact. As well as respecting Dylan’s preference for spending time alone, however, there were other factors which prevented me from setting up more play dates.

Organising social events for autistic children is tricky when your child attends a special school. Although you become familiar with the other children on the bus your child travels on, you may never meet their parents. Furthermore, there are few occasions when you get to visit your child’s school at the same time as other families. In this situation it isn’t easy to make connections with the parents of your child’s peer group. It was a happy chance, then, when it turned out that a new friend through my poetry networks had an autistic daughter the same age as Dylan.

I have written a little about Dylan’s trips out with Ella here, here and here. Although Dylan pays only scant attention to Ella, his relationship with her marks a development in Dylan’s understanding of peer group relationships. He has learned, for example, that he can meet people outside the context of school who have similar interests to him. I’ll never forget Dylan’s astonishment when, visiting Ella at home one day, he discovered that her VHS and DVD collection was almost a complete copy of his own. I also learned, as he pulled all Ella’s films off her shelves and spread them around her bedroom floor (Ella looking on in increasing agitation) that Dylan can be just as annoying to his autistic peers as they are to him.

Christopher*

party time 004Dylan’s relationships with Ruby and Ella are fairly typical of his peer group friendships. I don’t think the fact they are with the opposite sex is especially significant although as Dylan grew up in a predominantly female household I suppose he may feel more comfortable with girls. For a while when he was younger, however, Dylan had a quite exceptional friendship with a boy called Christopher.

For a long time I didn’t know about Christopher. One day however, dropping Dylan off at his primary school following an appointment, I was surprised to see him approach another child and give him an excited squeeze. Anxious about the physical contact I made to intervene but Dylan’s class teacher stopped me: ‘It’s alright – that’s Dylan’s little friend ‘ she said. ‘They’re pleased to see each other. ‘Friend? Dylan? I had never seen Dylan pay attention to anyone his own age except for his sister and step-sister.

Dylan treats siblings as honorary adults. At a young age Dylan discovered that people his own size at home could help him to the things he wanted in the same way parents could; they could rewind videos, reach a packet of crisps, fasten shoelaces and play clapping games. ‘Sister’ and ‘Mog’ were therefore acceptable to Dylan. Apart from this, other children (especially if they were smaller) were to be avoided. Until Christopher.

I didn’t have many opportunities to see Dylan and Christopher together. Once however, while shopping at a supermarket the other side of town, Dylan suddenly ran off. When I caught up with Dylan he was at the other side of the checkout counter, holding Christopher’s hand and making greeting noises. I loved that Dylan had spotted his friend and gone to say hello. Later, when we moved to that part of the city, Dylan and Christopher travelled to and from school on the same minibus. I didn’t get to see them together as Dylan was collected before and dropped off after Christopher, but the escort often told me about their special friendship.

Perhaps in time the friendship between Dylan and Christopher would have moved to out of school contact. One day, however, there was an incident on the bus; Christopher and Dylan got upset and in the kerfuffle Dylan was hit by a flailing arm. This had a significant effect on Dylan who became wary, preferring to sit alone on the bus and no longer interacting freely with Christopher. No matter how much I tried to explain that what had happened was an ‘accident’ Dylan could not be reassured. Although it pained me to watch Dylan lose confidence I told myself that the fact he had experienced such feelings meant that, however severe his disability, he was capable of friendship.

Beyond School

Dylan July 13 002Although Dylan has grown into more comfortable relationships with his peer group there has never been another Christopher. When I let myself dream about Dylan’s future, however, I imagine a house with two or three young men, one of whom looks uncannily like him. I suspect I’ve spent the last four years looking for Christopher. ‘Has Dylan developed any special relationships?’ I ask teachers and care workers periodically. The answer is always the same: Not really.

Key workers and ‘adults who help’ continue to be Dylan’s main reference group. Perhaps that’s not so surprising: Dylan has enough self-awareness to recognise that he needs someone to support him with self care, food preparation and accessing the community. He is probably smart to put his emotional energy into those people he knows have a role in helping him with these things. What does he have to gain from investing time in members of a peer group? They are both the problem (too noisy, unpredictable and annoying) and the competition (also vying for the attention of a ‘helping adult’).

While recognising that Dylan may not prioritise friendships with his peer group, communal living is an experience which I want him to have, especially as Dylan has spent much of his life alone with me. At Ruby’s party I was reminded again of the opportunities which social contact brings; a shared house, I told myself, will help Dylan develop emotional and social skills. From time to time I’ve discussed with other parents the possibility of creating such a house. The problem, of course, is that like-minded parents do not necessarily have well-matched children. In the absence of a peer group chosen by me or identified by Dylan his next move will have to be into an established group. Although I am anxious about this it is, of course, no different to class groups in school. If teachers can manage their classrooms so they are positive environments then surely an adult community can aspire to the same goal?

Back to school

IMG_0193Except the influence which teachers can have on peer group relationships is, I know, limited. Although school years have been described as the happiest days of our lives there is increasing awareness that for many children this is not the case; for some they are the most miserable. In education there is a growing focus on the experience of the child with attempts to access the ‘voice’ of young and disabled children through participatory research methods. Against this background, ‘children’s friendship’ is an increasingly popular focus for enquiry.

I attended a seminar given by a colleague on this topic recently. Occasionally one of my undergraduate students opts to focus on friendship for a work placement project and I hoped the seminar would give me ideas for methods and literature I might share. As it was a lunchtime seminar following a busy morning I was concentrating on my sandwich as much as the seminar initially. Soon, however, I noticed that the categorisation of children’s friendship, and particularly its focus on play, were problematic if I made Dylan my reference point. For the next ten minutes I listened with Dylan in mind. This proved a revelation; the conceptualisation of ‘friendship’ simply did not work.

april-may 09 115While my colleague was describing research in the area I tried to imagine not just Dylan but other children on the autistic spectrum. It still wasn’t working. So I pushed to what might be considered the ‘mildest’ end of the spectrum; the place where the Aspie girls hang out. These are the girls who may ‘pass’ for years as neurotypical (sometimes a lifetime) because they are bright and articulate with a range of interests. There is increasing interest in these girls; because the diagnostic tool for autism has been primarily derived from, aimed at and applied to boys it is suggested that girls on the Asperger’s end of the spectrum tend to go unidentified. The growing research in the area suggests that for these girls the social experience of school is often miserable; awkward and on the edges, Aspie girls can find it difficult to interpret the environment or fit in. Some of the girls who experience bullying at school, it is suggested, may fall into this group of undiagnosed autistic.

My colleague started to describe one of the girls in her classroom study. She was on the margins. She wasn’t reporting friendships to my colleague using the same language or concepts as the other girls in the study nor was she mentioned by her classmates as a friend; she was, suggested my colleague, socially isolated. The power of educational research is that it is used to support and develop practice; practitioners build ideas from research into their work and promote them in educational environments. The assumption drawn from this particular study was that the isolated girl needed to be helped to develop more appropriate patterns of social interaction, i.e. to form ‘friendships’ with her peers.

The more I thought about the girl in the case study the more I was convinced that it wasn’t she who needed help but the other children in the class. Surely an inclusive environment would be one in which a group is able to support someone who chooses to inhabit the peripheral zone of a classroom? Shouldn’t we be encouraging children to understand that not everyone wants to be sociable and spend their time small talking with peers? Ought we not to be promoting a model of diversity in relation to social interaction in classrooms rather than a monolithic concept of friendship? This girl and Dylan, I realised, were not only not adequately described by this research, they were problematised by it. ‘Friendship’, it seemed, was another of those norms which feel so irrelevant to Dylan’s life and such an obstacle to his inclusion in society. As the vignettes of Dylan’s interactions with some of his peers show, Dylan is capable of forming meaningful relationships; while they might not follow the dominant model of friendship, they are no less valuable for that. As Dylan’s journey into communal living gets underway I will not doubt reflect further on this issue.

*names have been changed.

Acknowledgements

I am grateful to my colleague for inadvertently providing me with the opportunity to reflect on Dylan’s relationships with others and the conceptualisation of ‘friendship’. My colleague’s research was not concerned with autism but with other issues which I do not address in this post and from which I confess I attempted to divert attention during the latter part of the seminar. My left-field interjections were fielded gracefully 🙂

For information about issues related to ‘Aspie Girls’ there is no better resource than Cynthia Kim’s excellent blog Musings of an Aspie: http://musingsofanaspie.com/about/

Images:

The photos of Dylan and Ella were taken on the banks of the canal at Sheffield and Chesterfield. The pictures of Dylan as an adult were taken at the Under the Stars Disco. The children’s party photos were taken at Dylan’s 6th birthday at a soft play centre. The classroom photo is of a younger me working with a group of primary school children on a writing project. The shadow photo is by (and of) me.

Reasonable Adjustments: working and caring

May 011I went back to work recently after having some time off sick at the end of the summer. I had an infected ear as a result of Dylan’s attempts to remove it and stress-related symptoms which made it hard to concentrate. Previously I’d managed the demands of being a carer alongside a full time job but last month I knew I had reached my limit. I had never had a sick note before: what do I do with this? I asked my General Practitioner.

I’ve almost caught up at work. It helps that Dylan has been generally calmer in the last few weeks; although there have been occasions when he has become distressed, I’ve managed to head off potential incidents. Being able to predict the signs, and having some strategies for settling Dylan, help me feel more confident. I wouldn’t say things are alright, but I’m treading water not drowning.

The cost of adjustments

2013-11-30 16.39.46Dylan may be calmer due to some of the changes I’ve made in his care. One intervention which seems to have made a difference is removing high-sugar foods from Dylan’s diet (I have written about this here and here). This change has come at a cost, however, as implementing it sensitively has meant the removal of some of Dylan’s favourite routines.

Dylan was in the habit, for example, of going to a cafe following a weekly trip to the library. Because this routine was embedded, in order for Dylan not to have cake I have had to remove the library visit from his schedule. Another activity which has had to stop, at least for the moment, is the cinema. When I first started taking Dylan to the cinema I used sweets as rewards for appropriate behaviour; as the habit of buying sweets continued, if I don’t want Dylan to have them it means no cinema visits either.

Kent August 2012 171As well as changing Dylan’s routines I have had to adjust the way he accesses the community. While previously I would take Dylan most places, providing I had a back-up plan, there are now some activities I wouldn’t attempt alone. My new risk assessment has to involve a consideration of how I would protect Dylan and myself, as well as members of the public, if Dylan became distressed. Because of the changes in Dylan’s behaviour he now receives 2:1 support in respite care and has access to a team of staff at his day centre.  I can’t provide this level of support at home but weekends would be impossible if we never went out so I do still take risks.

Four Days

While looking after Dylan used to be relatively low key it now requires my constant focus. Evenings and weekends are no longer a rest from work but rather my busiest times. I have always regarded caring a full-time responsibility but since June it’s felt like a full time job.

limitsFortunately, as it turned out, I’d negotiated a reduction in my working hours before the changes in Dylan emerged. It wasn’t that I had a crystal ball and had foreseen that home life would become challenging; I requested reduced hours because the education provision I had spent a year fighting for was due to start in September (you can read more about this here and here). While I was delighted that my effort to secure this had paid off, it meant that Dylan’s day would now end at 3pm. This presented me with a problem I could only solve by reducing my working hours.

Dylan had been accessing education provision one day a week as an interim measure so I had already had a taste of how difficult things would become for me after the summer. The situation reminded me of primary school years; when my children were young the lack of fit between the end of the school day at 3.30 and the end of the working day at 5.30 was a constant source of stress. After my marriage broke down, this exacerbated; as a single parent I was dependent on after school club for my daughter and on my mother or a childminder for Dylan. The situation eased as the children moved to secondary school; although never easy, their end-of-days became more manageable. Now, it seemed, Dylan would revert to primary time.

While it’s hard to find satisfactory childcare for an autistic child it is almost impossible to find for a ‘high need’ autistic adult, especially for a handful of hours on the edge of a city. With Dylan’s education provision set to increase from September I would have to work shorter days and collect Dylan myself.

The cost of flexibility

2013-10-17 12.42.01Parents of disabled children and adults have been entitled to request flexible working patterns (part-time working, compressed hours or working from home) under employment legislation for some time. A 2013 survey of working parents of disabled children (conducted by Working Families & Mumsnet) reported that the most important factor keeping respondents in employment was flexible working (36.5%) and an understanding employer (21.2%). My employer has, over the years, made it possible for me to continue to work full-time by accommodating my requests to work flexibly. My classes, for example, are not timetabled until 10am, giving me leeway in case Dylan’s transport is running late. It isn’t easy – I’m often running at high speed between places and I never take a lunch break – but I manage.

From June 30th this year the right to request flexible working was extended to all employees with 26 weeks of service with an employer. Employers have always had the right to refuse a request to work flexibly if they can demonstrate an adverse impact on business. Multiple requests for flexible working could potentially increase their ability to claim this; if everyone started teaching at 10am there would be an awful lot of empty classrooms in the early morning. It will be interesting to see how the extension of the right to request flexible working impacts on requests granted to employees with caring responsibilities.

The guidance which has been issued to employers includes suggestions about what to do if several employees request the same thing. As ever, the distinction between what an employer is required to do and what they are encouraged to do is critical; there are more ‘shoulds’ than ‘musts’ in the revised legislation. Bearing this in mind, I’m happy with the agreement I secured of a temporary one year reduction in my contracted hours.

The fifth day

2013-12-20 09.56.41

What might have been…

I had an email from a parent last week asking whether I could update her on the education provision I’d been involved with setting up. She had heard it was open – was this true? And had it kept its original purpose to provide for ‘high need’ adults? By the way, she hadn’t seen me and Dylan at the inclusive cinema screenings recently – she hoped we were alright?

The email brought home to me how much had changed and how quickly. I replied that the new provision was indeed open but that changes in Dylan’s needs and funding meant it was no longer appropriate for him. Of course I don’t begrudge another young person taking up the place which Dylan might have had but I feel sad that he won’t access the provision I lobbied so hard for.

So, as it turns out, I don’t need to pick Dylan up at 3pm after all. For the moment, he is attending his day centre (which operates longer hours) five days a week. Still,  I’m glad for my fifth day. It helps to be able to leave work early enough to have a break before Dylan arrives home from his day centre. The time is also invaluable for doing the chores I can no longer manage at weekends; Dylan used to enjoy shopping with me but with so many of his favourite foods off the menu, and his behaviour unpredictable, this isn’t an option anymore. The fifth day, I’m discovering, helps me tread water.

A reasonable sacrifice

2013-10-17 12.41.52It must have been on a day off that I caught an item on the TV news about downshifting to a four day week. Two young researchers (themselves part-time) were being interviewed about a report they’d authored expounding the benefits of 0.8 employment contracts. Naturally I listened in. All seemed to be going sweetly until the interviewer asked the million dollar (or rather 20%) question: how many people did they imagine could take such a hit to their pay?

There is no getting away from the impact on disposal income; not everyone could sacrifice a fifth of their income or make good the loss from a savings pot. So while it’s great that we have the right to work flexibly, it does come at a cost (and one which is often borne by women). Ironically those most in need of flexible working may be least able to sacrifice income: if you’re on your own no one else is going to pay the mortgage or build your pension. While I’ve never regretted leaving my marriage I am continually struck by how hard it is to bring up a disabled child alone. Two’s certainly better than one if you can keep it together.

There’s a storyline in the BBC Radio Serial The Archers at the moment which involves independent entrepreneur Debbie Archer giving up work to look after her child. Actually it’s not clear whether she’s staying home on account of the child (who she has brought up on her own so far) or the new man in her life. Debbie’s mum Pat, an activist and Greenham Common veteran, is troubled by her daughter’s decision. Listening to Pat bewailing the death of feminism the other evening I almost capitulated on my decision to cut back my hours; income, I realised, isn’t the only thing I stand to lose. Still, I can understand where Debbie’s coming from. Mothering. Caring. These are important. They make a contribution to society and to the lives of those we love. Dylan is calmer now. I have more space in my week to support him and to ease his transition to what lies ahead. It’s a reasonable sacrifice.

Images:

The photographs were taken by me except for the roller coaster (a gift from a friend, original source unknown). I took the photos of the steel helter skelter at the Electric Works, an office building in the city where I live. I attended a conference there last year on women in the workplace so the photos seemed appropriate. I loved that office workers were using the helter skelter instead of the stairs; I watched people on the top floor casually taking a sack from the pile and, sandwiches in hand, sliding out of the building for their lunch break. A perk worth working full time for perhaps 🙂

*

The Working Families ‘Working On Campaign’ aims to:

  • raise awareness of the difficulties faced by parents of disabled children who seek to combine work and care;
  • encourage change in childcare provision and employment practices to enable parents of disabled children to remain in work;
  • change attitudes so that it is recognised that parents of disabled children can work but need support to remain in employment.

Useful resources:

The Numbers Game: advocating for Dylan

Dylan leaves school 015This time last year Dylan had just left school. Our local authority had not allocated an adult placement and I was anxious; Dylan was in need of structured provision and I needed to get to work. At the end of the summer, with no solution in sight, I decided to take legal action against the council. In this post I tell the story of my struggle to secure provision for Dylan; it’s a ‘cock up or cover up’ tale and a narrative of numbers.

1,000
I’ve heard this cited as the amount (£) required per week to support an autistic adult with significant needs. That’s £200 per day calculated over five days or £142.85 per day for seven; these figures can be further divided to produce a ballpark hourly sum. While it is clear from such calculations that £1,000 per week doesn’t come close to funding residential care it is a realistic amount for day care. This may seem a lot of money. It is not dissimilar, however, to the amount we would need to pay parents to care for pre-school children if this were rewarded as paid labour. Parents of autistic children provide such support, unpaid, throughout the school years as part of an informal economy of care. Once an autistic child reaches adulthood, however, the cost of any continuing support needs are funded via personal budgets and become part of the formal economy.

Compassionate economics
botanical gardens 001
Caring for the vulnerable is a responsibility which everyone assumes in a compassionate society; in the UK these principles are at the heart of a tax system which redistributes resources to those most in need. I’m fortunate to have a job which enables me to make a contribution to the welfare state. While I don’t always agree with the Government’s spending priorities, I’m happy to pay my taxes: for me, Dylan embodies both reason and need. Supporting disabled people contributes to the economy too: Dylan purchases care services with his personal budget which helps to create jobs with all the economic benefits which follow from that. While the care sector faces significant challenges, especially in relation to the pay and conditions of care workers, it is sustained by people like Dylan. Dylan also contributes to the economy through his spending on goods and services, particularly in the leisure sector. This injection of money into the local economy via personal budgets creates a multiplier effect and contributes to a community’s financial health and well-being.

39, 010.00 botanical gardens 003
So when Dylan turned 18 he underwent assessment to determine how much social care funding he would be allocated; this is calculated via a questionnaire completed by a social worker. Dylan’s personal budget was set at the above amount. When I received notification of this it seemed like a lot, particularly as at that point Dylan was still at school and needed only a small amount of respite (I have written about this here). I had a sense of unease though; I wasn’t sure how the budget would cover day care as well once Dylan left school. I wasn’t aware, at the time, of the figure of 1,000 a week; had I been I might have asked which 13 of the 52 weeks the budget was not intended to cover (and why).

17
It was an ‘indicative figure’ only, apparently, not a funding agreement. What this meant was that the Panel believed Dylan’s care needs could be met within this amount. The next stage was for a Support Plan to be submitted with detailed proposals for how the money would be spent. Only once such a plan had been approved would any funding be released; a proposal which didn’t keep within the indicative budget, I was warned, was unlikely to be funded. I opted to write Dylan’s Support Plan myself as I had already started researching and visiting providers. The settings I considered included local and regional providers, colleges and care homes, day centres and residential placements. My final tally of visits to potential providers was 17: ‘I’ve never known anyone make as many visits as you’, a man from the council would later observe.

Tails and dogs botanical gardens 004
There is a saying in education: ‘it’s the resources tail wagging the curriculum dog’. This refers to the way that educational practice is sometimes driven by resources rather than need. And what’s wrong with that? you might ask, everyone has to live within their means. While Dylan was in the education system, however, the starting point felt like need; the budget played a part in the provision he was offered but it was factored in after his needs had been considered rather than before. I was struck by the way this turned on its head when Dylan moved into adult social care; here is what you can spend – now go and see what you can buy. What Dylan could afford with his budget, it turned out, wasn’t very much. The variety of the 17 providers I had identified was reflected in the range of their fees. The first provider I visited set the gold standard at £4,000 per week. When I looked round the setting I felt optimistic about the future. Afterwards, when I realised it was neither typical or realistic, I allowed myself only fleeting disappointment; the setting was expensive because it catered for people for whom all other placements had failed. Dylan was at the start of his journey, not the end; requesting this setting would be unreasonable. I therefore ‘cut the cloth’ (a variation on the tail and the dog).

54, 067
botanical gardens 005I opted for a day service for adults with learning disabilities and submitted my first support plan in April 2013. The projected budget was higher than Dylan’s indicative budget but I thought it would be OK; it worked out around £1,000 per week. Furthermore, the amount requested for day care was within the indicative budget; it was the one night a week of respite which had taken the overall amount above the indicative level.

Level 42
The April support plan was rejected. So was a revised plan for a reduced amount which I submitted in May. So was the further reduced June support plan. And the even further reduced July support plan. In order to cut costs further I was faced with the choice of sacrificing Dylan’s one night a week respite provision (in the almost-certain knowledge that I would get into crisis without it) or keeping the respite provision and reducing Dylan’s day care provision (so not being able to work full time and provide financially). Then I discovered level 42: there was I heard (though the council wouldn’t admit this) a budget cap of £42,000. Was it true that Dylan’s Support Plans were being rejected because of a budget cap? I asked the social worker. No it was because they were above his indicative budget. Dylan needed a higher indicative budget then – the one he had been given wouldn’t meet his needs. Could he be reassessed? Dylan’s indicative budget was as high as it was possible to be allocated, Dylan’s social worker replied: I could request reassessment but there was only one way it could go and that was down.

The line in the sand botanical gardens 006
Social workers are doing the job because they care but it can be hard to remember this sometimes. There are times when they can feel like adversaries rather than advocates. They are under pressure I know; they are probably encouraged not to bring Support Plans for approval which are above a certain amount. I know some social workers who have quit their jobs to work on projects which give them more contact with clients. I imagine that for them the policy drift became intolerable. It’s what I think of as the line in the sand: the point of principle you will not cross; the place where you shout Stop, Enough! When Dylan’s fourth Support Plan was rejected it was suggested that I employ a Personal Assistant for Dylan in order to cut costs. While this works well for some people it would not be a good option for Dylan or the PA: I had reached my line.

139a botanical gardens 007
I couldn’t see a way of maintaining our current life so started plotting escape narratives: I would buy a camper van and travel round Britain with Dylan, living on benefits. We would find a 52 week caravan park. We would live on a commune in exchange for payment in kind (what? what could we offer?). I started typing wild questions into Google, hoping for an answer. Then something appeared in my Facebook newsfeed: an autistic man in another authority was taking his council to court for budget capping. I read with gathering interest; although the details were different, the principles were the same. I shelved the camper van idea and booked an appointment with a solicitor.
The solicitor confirmed that budget capping was illegal but, she said, if we didn’t have evidence in writing that the local authority had set a limit of 42,000 it would be a difficult case to win. However, my solicitor asked, was I aware of section 139a funding and had Dylan been assessed? Section 139a is a clause in the 2000 Learning and Skills Act (superseded by the 2014 Children and Families Act which comes into force next month) which requires local authorities to provide education and training to young people with a learning disability up to the age of 25. Local authorities, apparently, were required to conduct a 139a assessment of all school leavers with a learning disability.

Cock up or cover up? botanical gardens 008
I had never heard of a 139a assessment. In all my conversations with teachers, transition workers, council representatives, social workers and other parents, it had never been mentioned. Dylan’s school had completed their section of the assessment; it was the responsibility of the local authority, however, to use this to identify an appropriate educational setting. In my local authority this wasn’t happening. While educational places were being offered to young people with an Asperger’s diagnosis or at the ‘higher functioning’ end of the spectrum, Dylan and those with a similar level of need were not being offered education beyond school. Previously, some young people with high needs had been funded to take up specialist education places outside the city but the local authority had stopped funding such provision. What this meant is that support for young adults with high needs was being funded entirely by social care (and sometimes continuing health care). For some families, this was adequate; for example if a parent was at home and able to offer support or where PA support was appropriate. It was only the fact that the social care budget wasn’t enough to support Dylan for the five days I needed to be at work which brought the issue of 139a funding to light. Who knew about this? Not the parents. If social care workers knew about it they didn’t think to mention it. The Council’s legal department, in the letter to Dylan’s solicitor in which they accepted all the claims made against them before the case went to court, suggested that Dylan had been ‘overlooked’ because he was at a specialist rather than a local authority school. Well if they want to claim that let them, said my solicitor, who thought they were covering up. The man from the council who was instructed to complete the 139a assessment on Dylan as a matter of urgency assured me, however, it was just a cock-up.

76, 000 botanical gardens 009
Discovering that Dylan was entitled to education funding appeared to solve the problem of the uncapped but inadequate social care budget; I could combine education and social care funding and put together a weekly programme which would meet Dylan’s needs and enable me to  work. It feels as if at this point I ought to write ‘so it all ended happily ever after’. Except it didn’t.
There wasn’t, it turned out, any suitable education provision for Dylan in the city. EFA funding (arising from the 139a assessment) could only be used at organisations which were on a list of approved ‘Natspec’ providers; in my local authority there were less than a handful of these and none aimed at adults with high need. While my local authority had stopped funding young people to attend specialist colleges outside the city, they had failed to develop any provision within the authority for young adults like Dylan. The college I thought the likeliest refused to even assess Dylan for a place. Out of interest, I asked the man from the council, what does a full time place at this college cost? I had won a point of principle it seemed; Dylan was entitled to EFA funding almost double the social care budget but there was nothing for him to spend it on.

Five botanical gardens 010
I submitted Support Plan number five in August 2013. This was an interim plan, I stressed: I was requesting support for Dylan from the social care budget while I worked with the local authority to develop suitable educational provision for Dylan. Premises had been identified. A steering committee had been set up. Somebody was (more or less) project managing. While the new provision was being developed Dylan would be supported from the education budget one day a week at a city farm. I would make a contribution too through a temporary reduction in my working hours. This would reduce the amount of social care funding requested and, once the provision was up and running, Dylan’s education-funded days could increase to two or maybe even three, further reducing the cost of social care.

40, 075
Approved.

Presume incompetence botanical gardens 011
‘Presume competence’ is a buzz phrase in the disability community at the moment; the idea is that we should not assume that because someone has alternative neurology (with associated differences in communication, behaviour etc) they are not competent. My experience with adult autism services in the last year has led me to presume them incompetent, i.e. not to assume services meet need (that is not a slur on individuals but the system). While I don’t believe Dylan’s entitlement to education funding was deliberately concealed, nor do I accept he was forgotten; it was a consequence of a fragmented system which put services not service users at the heart of decisions. I have told this story as a narrative of numbers to illustrate the way decisions were made about Dylan’s care on  economic grounds. While provision is clearly subject to funding constraints, we cannot allow local authorities to cut statutory services in order to balance budgets. There was never any doubt about the level of support which Dylan needed; the issue was which sector was going to take responsibility for funding it. The needs of autistic adults are complex and will not be met unless professionals from the health, education and care sectors have mechanisms for talking to each other; perhaps the Children and Families Act, with its proposal for education, health and care plans, will help address this.

Two DSCF3966
Last month, after my long battle to secure education provision for Dylan, I heard that he had been approved for health care funding. To qualify for continuing health care funding you need to score two ‘As’ on an initial assessment tool. It is difficult to get such scores; you are in the hands of the assessor and challenging their judgement is complex and time consuming. Nonetheless, alongside my attempt to secure education funding, I tried (I have written a little about this here). I’m glad I did; Dylan will now finally be able to access the provision he needs. While it means he is no longer in need of the social care and education funding I fought so hard for,  others will benefit from the education provision being developed in the city as a result of his case.

Was it worth it? The cost to myself and Dylan has been enormous; if you’ve been following this blog you’ll know that Dylan has developed behaviours recently and it’s possible these are a result of his difficult year. The events narrated here cover the last 12 months but I started planning for transition when Dylan was 14; he is 20 now and it’s not over yet. I’m exhausted. Had the original Support Plan been accepted – at just 12,000 over the budget cap – much uncertainty, stress and damage might have been avoided. And, ironically, it would have been cheaper. But was it worth it? Yes.

* Notes: Some of the details of Dylan’s case will be superseded by the 2014 Children and Families Act. However the Act is not yet in force and interim arrangements require local authorities to continue to assess school leavers with a learning disability under clause 139A in order to provide an appropriate education placement. If your child left school this summer you might want to pursue this. Although the mechanisms are different under the new legislation, the principle of access to continuing education for young adults with a learning disability remains. Some useful resources include:

  • HMSO (2000) Learning and Skills Act
  • HMSO (April 2014) Children and Families Act
  • Department for Education (April 2013) Section 139A Learning Difficulty Assessments Statutory Guidance for local authorities
  • Department for Education and Department of Health (April 2014) Implementing a new 0 to 25 special needs system: LAs and partners
  • Department for Education (August 2014) Special educational needs and disabilities: a guide for parents and carers
  • Natspec:  the Association of Nationalist Specialist Colleges

The legal firm which were so helpful in Dylan’s case was Irwin Mitchell; my thanks to his superb solicitor. * All the images were taken by Liz except the closing photo which was taken by a member of staff at the day centre Dylan was finally allocated.  The opening photograph was taken on the day Dylan left school in August 2013. The other photos were taken in the Botanical Gardens, a place Dylan loves.