50 Shades Of Beige

macaroni cheeseIn a previous post I reflected on the reasons why I didn’t pursue dietary intervention with Dylan when he was young; his autistic behaviour, I decided, was probably not exacerbated by food intolerance. I did try to intervene on more general health grounds but when this proved unsuccessful I resigned myself to Dylan’s diet being less than perfect. As a food-aware vegetarian this was an aspect of parenting an autistic child I found hard to accept; I learned to tolerate Dylan’s food choices, however, by trying to understand them.

50 shades of beige

baguettes| crumpets| English muffins| Belgian waffles| Scotch pancakes| brioche| croissants| pop tarts| cornflakes| white wraps| white rolls| milk| butter| white cheddar cheese| edam cheese| Dairylea slices| fromage frais| yoghurt| potatoes| bananas| apples| cheese pasties| macaroni cheese| spaghetti| tortelloni | cheese sauce| cheese pizza| cheesy potato cakes| cheese pancakes| quorn nuggets| chips| veggie fingers| vegetarian kievs| vegetarian schnitzels| vegetarian meat balls| vegetarian sausages| Yorkshire puddings| vegetarian escalopes| Pringles| quavers| mini cheddars| angel cake| fondant fancies| donuts| syrup| ice cream| gingerbread men| millionaires shortbread| cookies| white chocolate|

Food and the senses

food6Again and again, when trying to understand Dylan’s world, I return to the senses. What distinguishes Dylan’s foods is that they are largely colour-free, flavour-free and odourless. I use the term ‘beige’ to describe that neutral range of shades from pale straw through to caramel. Some of the more adventurous foods in Dylan’s list throw in a pastel: the pale yellow of a banana, a light green apple or the pink and lemon of angel cake. Essentially, however, Dylan’s meals are beige.

I photograph Dylan’s meals so that I can offer him food choices and it was through this I noticed the colours tend to be neutral. Fresh pasta would be ruined for Dylan by the addition of sauce: with one exception it must be served plain with a sprinkling of grated cheese. Pizza must be unadorned with no tomato sauce visible through the uncoloured cheese. Main course selections can be accompanied by Dylan’s one vegetable, served one way (I have considered colouring chips orange as deterrent).

food10I’ve used some of the images to illustrate this post; as well as being underwhelmed visually, if this were a multi-sensory blog you wouldn’t be able to smell much either. The least bland food in the list is probably vegetarian kievs; these are a relatively recent addition to Dylan’s diet which gives me hope that he may accept a wider range of tastes and smells eventually. The kievs are a familiar brand, made of quorn and beige in colour; these factors probably encouraged Dylan to try them. Gingerbread men are spicy too but Dylan makes an exception for them, I think, because he associates these with his Gran.

I am happy to support the aspects of Dylan’s diet which are linked to his sensory needs; I wouldn’t want to serve him foods which cause distress because of the way they smell, taste, look or feel. While this means Dylan’s diet is bland and repetitive, if he enjoys it and is basically healthy I don’t object. Dylan has developed strategies for selecting foods which meet his requirements for low sensory arousal; there is a kosher range at one supermarket, for example, which he trusts. When Linda McCartney changed the sausage seasoning, however, Dylan avoided other products in the range (which had previously been his favourite). As food producers try to excite and delight our taste buds, Dylan withdraws his custom.

Brid and Food 065Although Dylan wouldn’t dream of eating highly-spiced or smelly food he is fascinated by it. One of his few clear words is ‘marmite'; he frequently fetches the marmite pot from the kitchen and walks around with it, pretending to smell then saying ‘phewee’ while waving his hand across his nose. If I offer him a jar or bottle to sniff he will gingerly approach it, simultaneously intrigued and repelled. But eat or drink it he will not – and his taste buds are so finally tuned he can detect rogue substances instantly.

Some surprises

food4There have been some surprises. Pesto for example. True he picks out every single pine kernel, but the colour, smell and taste are for some reason perfectly acceptable to Dylan. Building on this I have introduced mozzarella and pesto escalopes (in a quorn range Dylan likes) and have recently tried him with spinach and ricotta tortelloni. I figured Dylan might mistake the green stuffing for pesto; he is suspicious I think, but has eaten it a couple of times. It makes me happy to offer Dylan pesto or spinach and ricotta pasta because it feels healthier than some of his other choices; I also like to give Dylan veggie fingers because that way I sneak tiny pieces of carrot and pea past him (the only time his vegetable-detecting radar seems not to work).

Brid and Food 071Dylan’s list of 50 foods is notable for its tally of only one vegetable. Although I fed Dylan a wide range of pureed fruits and vegetables as a baby he has not eaten a vegetable since (except for potatoes and the fragments of pea and carrot in veggie fingers). I assume his aversion to them is partly about colour. Dylan will, however, tolerate some bright fruits: strawberries, cherries, plums and grapes are now acceptable. I have wondered whether Dylan’s liking for these is linked to his love of sweets: they have acquired the status of Honorary Haribos, perhaps. Because I should note that, in addition to the 50 beige foods, Dylan eats brightly coloured jelly-type and candy sweets if I let him.

Sugar and spice

needsweets.co.ukAs I have noted in an earlier post I am careful about Dylan’s intake of sweets; although they can be an effective reward as part of a behaviour training programme I am uncomfortable with their use. Given Dylan’s restricted diet I have felt a particular need to limit Dylan’s sugar intake; while I might not insist he eats the foods he has an aversion to, I can at least restrict unhealthy items he is unhealthily predisposed to. This was easier when Dylan was younger and I had more responsibility for his diet and food choices than I do now he is an adult. In the last couple of weeks this has become a potentially significant issue.

food5If you follow our blog you will know that Dylan has developed behaviours recently that have been causing concern. I have been keeping charts logging incidents but have struggled to find a pattern to the behaviours; in the absence of obvious environmental explanations, Dylan has been referred for neurological assessments.

Brid and Food 078I should perhaps be more explicit about the behaviours. They usually emerge suddenly in that immediately beforehand Dylan appears happily engaged in an activity. Incidents have happened at home, respite, day centre, indoors and outdoors, and with the full range of people who support Dylan. Dylan will typically begin with trance-like behaviour; his eyes will glaze over and often he will stare transfixed at his own hands, wiggling his fingers. By this point Dylan is unreachable, unresponsive to attempts to communicate and refusing touch. The trance phase is usually followed by wild jumping.

Brid and Food 077Dylan has always jumped, something I have considered a communicative act (I have written a little about my attempts to make sense of Dylan’s jumping here). Recently, however, Dylan’s jumping has changed; he throws himself around violently and wildly with immense force, putting himself at risk as well as others. Dylan is extremely distressed during these times; it is not jumping that is bringing him pleasure or relief. Jumping is now a transitional phase to a more challenging stage in which Dylan attacks his carer, usually by tearing at their ears. Resolution can come quickly or take several hours and afterwards Dylan seems to have little or no memory of events.

food3I must stress, for those who don’t know him personally, how unlike Dylan this behaviour is; it has been a shock to everyone involved with his care as Dylan has always been considered a gentle young man. At one school review I was told that his behaviour chart was quite unusual; the only incidents recorded that year were letting off the fire extinguisher twice and some cup-smashing incidents. Against this profile, the last few months have been hard to fathom; the change has been so sudden and extreme I have been more or less convinced that the only possible explanation was neurological.

And then, a couple of weeks ago, a woman who hadn’t met Dylan before came to assess him. I shared Dylan’s charts; she was interested and emailed later to say she had been racking her brain for possible answers. I might want to look more closely at food, she said – had I noticed that events often took place around meal times. Could Dylan be suffering from reflux? Feeling sick? Could he be diabetic perhaps? Had I considered spicy food? Or sugar perhaps?

The Milkybars are not on me

milky bar wikipediaBecause the changes in Dylan’s behaviour had been so dramatic I had been looking for something in his life that had changed; now I was faced with the possibility that the behaviours were linked to something that had remained the same. That night I stayed up researching food intolerance and aggressive behaviour; a suggestion that cropped up again and again was sugar and, more specifically, white chocolate. White chocolate is Dylan’s favourite treat. He always picks a white chocolate egg at Easter. When we shop he chooses a milky bar. He selects white chocolate chip for the cookie tin. People who know Dylan give him white chocolate for a present. This had always seemed fairly innocuous to me.

The milky bar kid is strong and tough, and only the best is good enough
the creamiest milk, the whitest bar, the good taste that’s in MILKYBAR!

Brid and Food 072When I looked back through Dylan’s behaviour chart I found details which lent support to the sugar hypothesis: the day Dylan had a major incident coming down the valley he had bought an ice cream on the way up; a terrible attack one Sunday evening happened 40 minutes after Dylan had eaten a half bag of white buttons. I decided this was worth pursuing and moved Dylan on to a low sugar diet: no chocolate, biscuits, cakes, ice cream or soft drinks.

Dylan didn’t eat a lot of these previously; he was allowed one item for pudding after his evening meal and soft drinks two or three times a week. I know that Dylan consumed more sugary products than he was used to when he first started at his day centre but this was quickly picked up and dealt with; from his day centre records Dylan was not consuming excessive sugar there either. My understanding, however, is that if an intolerance develops even the smallest amount can trigger a response.

Brid and Food 074Dylan is now on two charts: one recording behaviours and one recording what he eats and drinks. Since starting the new regime there have been just two incidents (on days three and 10) compared to the previous pattern of almost daily incidents. For some of the time Dylan and I were away from home, something which will have made the change in diet both more and less difficult for Dylan. On the plus side the change of routine may have helped him to accept an altered diet; less helpfully, seaside resorts are full of sugar-eating opportunities. Dylan accepted the new food rules, however, and on the fifth incident-free day I was all but convinced I had cracked the sugar code. Although a later incident reminded me of the need for caution I am sufficiently persuaded by the link to have revised my view of autism and food intolerance.

foodxDuring this time I too have been sugar-free; how could I eat an ice cream while saying ‘No’ to Dylan? At the moment I’m reading Caroline Knapp’s Drinking: A Love Story, a memoir about getting sober. The book has encouraged me to reassess my own decision to give up drinking six years ago (which you can read about here). I have also found myself thinking about addiction more generally; giving up sugar, I realise, could be as hard for Dylan as giving up drinking was for me. I’ve tried to help Dylan through the difficult early days by drawing on my own experience; I know the situation is different in that a decision has been made for rather than by Dylan but I have his long term interests at heart and hopefully some understanding of his short term struggle. Whatever the outcome, the shade of beige looks considerably less innocuous to me now.

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Reference:
Caroline Knapp (1996) Drinking:  a love story. Dial Press

Images:
All photographs taken by Liz except for the milky bar image which is via wikipedia and the strawberry haribo image which is via needsweets.co.uk

 

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 setting and I was anxious about the situation; 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. Setting up a blog was part of my advocacy; it was a way of sharing information with other parents. 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 001Caring 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, for example, purchases care services with his personal budget; this 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 003So 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 004There 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 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. I was faced with the choice of keeping respite provision and not being able to continue to work full time (so losing the family home) or prioritising working full time in the almost-certain knowledge that I would get into crisis without respite care (I’ve reflected on the impact of this period on me here).

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 006Social 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 007I 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 008I 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 009Discovering 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 010I 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

DSCF3966Last 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.

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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.

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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.

Ways Of Seeing: sepia, rose, 3D or lens-free?

The recent developments in Dylan’s behaviour are so puzzling they seem to need left field answers. I pore over the incident log searching for a pattern. When I can’t find one I turn it around and look again; it must be here somewhere, I tell myself, I just can’t see it. I share the log with others – maybe they will see something I’m missing.

August 2014 056Living with autism is a bit like being a detective. Usually I enjoy this; stumbling across the unexpected or finding a missing piece of puzzle is satisfying. Perhaps this time I’m looking too hard or in the wrong places: if there isn’t an obvious explanation I’m probably not going to find a cryptic solution in a log. Maybe I just need to stay watchful so I don’t miss the clues when they come.

My records, for example, could be part of the problem. Perhaps I can’t find a pattern not because of the way I’m looking at the log but because of the way I’m seeing the behaviour. Parenting Dylan, I’ve suggested before, is like ethnography; to understand his world I’ve had to walk in his shoes and look with his eyes. If I can’t make sense of Dylan’s behaviour then maybe I need a different way of seeing – otherwise, I might not stand a chance of that flash of light from the left hand side.

roseMy friend Jack, who blogs about being the sibling of an autistic man (among other things), can turn a cliché on its head. We view the past, he says, through sepia spectacles; it is the future we see through rose-coloured glass. Such optimism. Parents of autistic children can feel deep anxiety about the future but I suspect many of us bury it. I don’t know whether I have become a more positive person through Dylan’s autism or whether I was always an optimist but these days I wear prescription rose. They’re good up close, I think, but not so great at a distance. Perhaps that’s part of the problem: could my present-time focus be preventing a long-view of Dylan’s needs?

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Canal day 009Here’s Dylan with our friends Julie and Ella earlier this year; we’d been to Cineworld to see Tarzan. Ella is a seasoned cinema-goer but for Dylan this is still a relatively-new experience. I have worked hard over the last few years to support Dylan to access the cinema; we started with Autism-Friendly screenings and after a while were able to attend selected mainstream films. On this occasion Julie and I had planned to take Ella and Dylan to the cinema at the end of a canal walk; we would be tired and this would be a good way to end the day.

Canal day 006As it was hard to judge timings we would have to choose the film on arrival; not a problem at a cinema complex where there would be multiple screenings of children’s films. The first suitable film, however, turned out to be a 3D screening. Dylan hadn’t been to a 3D film before. I don’t think he’ll wear the glasses I said to Julie. As the glasses came in sealed bags we couldn’t try them before buying tickets. If Dylan wouldn’t wear the glasses, the man at the desk advised, he wouldn’t be able to enjoy the film; without them it would look blurry. The next regular screening (what would that be then? 2D? 1D?) was not for another hour; Dylan wouldn’t wait that long so, armed with pick ‘n’ mix and specs, we went in.

Canal day 010All appeared to be going well. I explained to Dylan about the glasses. I photographed him in them. He seemed pretty chilled. I turned to Julie; when I looked back Dylan had removed the lenses from his specs. Julie and I tried every which way but could not get those lens back into the frames. It was frustrating for me to have paid for glasses that hadn’t lasted to the start of the film but it would be even more frustrating for Dylan once the film started…

In the event we managed; Julie and I shared, sacrificing Tarzan’s outlines so that Dylan could experience him in 3D. Dylan seemed to prefer his lens-free glasses: he wore them as we left the cinema and, as I remember, kept them on in the restaurant afterwards. I think he looks rather handsome; the frames suit him. Julie pointed out it was actually a sensible thing for Dylan to have done: You gave him some glasses he couldn’t see through. He wanted to see so he took the lenses out.

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August 2014 067Some people never need to find frames which suit them but others have to face this. I have two prescriptions (as well as my rose spectacles) which I alternate between. My optician tells me that bifocals are inevitable at some point. This has happened recently and fairly rapidly; I’ve not had to think about my own eyesight much before now. I did, however, have to spend time at the eye hospital when my daughter was young.

verywellbeing.co.ukMy daughter had a squint or ‘lazy eye'; her father noticed it when she was only three years old (for some reason I could never see it) so it was picked up relatively early. Before a treatment path could be decided upon the doctors needed to undertake a comprehensive assessment of my daughter’s eyes including standard sight testing. This wouldn’t be possible, I told the optometrist. Her eyebrow raised. I could see ‘problem mother’ written across her face. Well we’ll just have a go shall we, she said. But my daughter, I explained, wouldn’t be able to complete the test because she didn’t know the alphabet: she won’t be able to tell you what she can see, I said.

My daughter was at a Steiner kindergarten and in line with Steiner philosophy my husband and I had made a decision not to introduce formal learning until she was seven. My daughter would not therefore be able to engage with the part of the sight test which required self-reports of vision based on the alphabet. The assessments were re-scheduled and in due course full measures obtained. I sometimes wondered whether the delay in gathering this data altered the course of treatment; although there had been talk of surgery my daughter controlled the squint and there was no intervention.

Dylan’s sight and hearing have never been assessed and, given the way measurements are taken, it is unlikely that they could be; for all I know Dylan may be short- or long-sighted. Medical tests and examinations require more than the informed consent of the patient (challenging as that can be); they usually require language and sometimes literacy. My daughter’s inability to report what she could see because she wasn’t yet literate was temporary; not completing the eye test did not have major implications for her health (and may even have helped given that it delayed intervention). For someone like Dylan, however, who is neither literate or verbal, the challenge posed by the need for medical examination is significant.

*

trance2Dylan has now been referred for neurological and psychological assessment; while the changes in his behaviour may be functional and an attempt to communicate, there is a possibility that Dylan is having seizures. Before Dylan is able to access specialist services, however, he needs to have had a full medical examination to rule out other possible causes. Dylan may, for example, have a persistent ear infection or chronic disturbance in his ear (Elisa, in a comment on this blog, has helpfully suggested tinnitus); this could explain why Dylan grabs at ears during an episode. Equally, Dylan may be experiencing headaches or some other underlying problem; the nose bleeds which Dylan has always been prone to have increased in frequency and duration in recent weeks.

Getting Dylan to accept a medical examination is, however, another matter; he refuses to allow our family doctor to carry out even the most perfunctory of observations. In particular, Dylan will not permit anybody near his ears. I have made previous reference to Dylan’s refusal to consent to medical intervention here and here. Apart from a couple of emergency situations this has never posed a problem in that Dylan has always been healthy. He never needed to visit the doctor as a child and was able to August 2014 045manage without Calpol (at least subsequent to the childhood ear infection which has collided in my memory with the onset of autism and which you can read about here).

Recent developments have, however, put Dylan in a difficult position in relation to medical services. The possibility that his distress may be due to an undiagnosed medical condition is troubling; Dylan does not understand that ‘medicine’ is a good thing and can make you better and he cannot therefore make an informed decision to accept or reject it. I act in his best interests. At what point might that involve over-ruling Dylan’s resistance? And what exactly might that involve? These are things which I will find out as the system cranks into action over the next few weeks.

In a previous post I have argued that we cannot leave autistic children until they are adults to encounter medical services. By then they may, like Dylan, be resistant to something which is unfamiliar and feels threatening. While Dylan was growing up I helped him to establish boundaries in relation to his own body; how does he square medical examination with my insistence that he shouldn’t remove clothing in front of strangers or let anyone touch him? I realise, now, that this lesson needs qualification.

*

dentist1I once read that the development which has contributed most to human happiness is dental care; before advances in dentistry, apparently, toothache was responsible for great misery. Happily Dylan (as far as I know) does not suffer from toothache; Mr Jones the dentist has worked patiently to support Dylan through ‘rides on the chair’ to the full examinations he now receives regularly. I have no idea whether this would help if Dylan ever needed any work doing but it would, presumably, assist with diagnosis.

Surely we could apply the model of regular dental check-ups to general health care for autistic children? Regular contact with professionals and equipment (stethoscopes, thermometers, BP monitors etc) when Dylan was young could have helped prepare him to accept the basic medical observations he is so in need of now. If you are a parent of a young autistic child, you might want to lobby your education provider to incorporate such a programme. Alternatively, you could take your well child for regular check-ups with your family doctor; one day you may be glad you did :-)

*

All images taken by Liz except for the rose-coloured spectacles (huffingtonpost.co.uk) and the sight test chart (verywellbeing.co.uk).

The Summer Schedule: scaffold and safety net

Earlier this week I was in my office, head down in papers, when I was struck by the silence. Where was everyone? It took a moment for me to realise that the schools had finished for summer and that colleagues with children were taking annual leave. Dylan left school just a year ago; how quickly, I thought to myself, I had lost the rhythms of the school year.

Dylan leaves school 013Last week I listened to an academic arguing (on the radio) that school holidays should be spread more evenly across the year because the free meals provided by schools are critical for some families; new research indicates that children from the poorest backgrounds may not get enough to eat during the long summer holiday. Educational arguments for adjusting school holidays have also been made; pupil regression, it is suggested, would be lessened if the summer break was shorter.

For autistic children, for whom routine and structure are key, the summer holiday can also be  challenging. Dylan was lucky enough to attend a National Autistic Society school where the calendar had been designed to take this into account; holidays were spread across the year so that pupils did not have a long break from school. So while the vast majority of schools in England are already closed for the summer, this time last year Dylan had not yet left school.

*

summer schedules 009It doesn’t surprise me that an adjustment to the school year for autistic children could benefit  children more generally; it is often noted that good practice for pupils with Special Educational Needs is good practice for all. As Dylan’s school was unique in its approach, however, his alternative calendar was not without problems; having children whose school holidays were different presented challenges when taking vacations, for example, and there were significant  implications for me as a working mother.

If you are a working parent, and especially if you are a single working parent of a disabled child, school holidays can be difficult. Working in the education sector I am fortunate to be able to take leave during the summer. School holidays at other times of year, however, were always problematic for me; half term break can be tricky for any working parent but a two week half term holiday (to allow for Dylan’s shorter summer) was a nightmare. In the silence of the office this week I remembered how difficult it had been to manage school holidays; for all the difficulties I had encountered since Dylan left school, I was glad that I no longer faced that particular challenge.

*

Brittany 13 084Part of the challenge for working parents of disabled children is the lack of childcare. Apart from attending a play scheme organised by a parent support group, Dylan was looked after in the home by my mother or a childminder during holidays. There were no camps, social organisations or summer activities which Dylan could attend. My experience may not be atypical; a 2013 survey of summer holiday childcare for disabled children (reported in Waving Not Drowning, a newsletter for carers and parents of disabled children who work or wish to work) found that most parents used care provided by a friend or family member. At the start of the summer holidays many families reported that they had yet to find care or had only tentative arrangements for the summer:

What resonates from the responses is how piecemeal, precarious, expensive and stressful cobbling together the summer provision is for many parents of disabled children. (Waving not Drowning, Autumn 2013)

The survey reported cases of parents having to leave their jobs because of summer care difficulties as well as changing hours, taking unpaid leave and working from home. There were also reports of family and mental health breakdown as a result of the stress of trying to arrange summer childcare. The Waving not Drowning report concludes:

Clearly lots of difficult, individual compromises are being made to survive the challenging summer holiday period and at considerable expense.

Brittany 13 082The WND survey of summer childcare focuses on the needs of the parents of disabled children. Appropriate child care is not only in the interests of parents, however; the home is not an easy environment for children who require specialist provision. I don’t have rebus symbols and timetables displayed around the house (though there are some). I haven’t got a ball pool, snoezelen, playground or even a garden. The home has flashpoints and hazards. Spending three or four weeks in this environment during the summer is not ideal for Dylan.

Brittany 13 086In the absence of appropriate holiday provision, however, parents of autistic children and young adults do the best they can to manage the summer holidays. When my children were small I would plan a diet of summer activities, balancing days aimed at my daughter’s interests with days based on Dylan’s needs. This was challenging but it was key to managing the school holidays. When my daughter outgrew my summer schedules I went on designing them for Dylan. Because Dylan’s interests are, for the most part, the same now as when he and my daughter were young, I have spent nearly 20 years doing the sorts of things parents usually get to do only briefly; my summers are still full of zoos, adventure playgrounds, museums, parks and sandcastles.

My summer schedules always included a mix of the tried and tested and the new. Trips that proved particularly popular made a repeat appearance the following year. Sometimes there was a theme; in 2011 for example the focus was ‘caves’ (I’d noticed Dylan was attracted by the darkness and acoustics). That summer the schedule included Cresswell Crags, Castleton and a visit to a lead mine.

Such schedules helped Dylan to manage a period of time which he would otherwise have found challenging. As well as benefitting Dylan, however, they supported me; I could get up in the morning, check the schedule and get on with the day. I found this helpful; no matter how difficult the previous day may have been, the schedule kept me focused. This is important given that, living with autism, there will always be days which challenge. It is easy in the aftermath of a difficult experience to stay home rather than access the community. However, when falling off a bicycle you have to get straight back on and a summer schedule enabled me to do this; it was a scaffold for Dylan and a safety net for me.

Summer 2013

Summer 2013

A schedule can only ever be aspirational however: in the last three summers there were days which didn’t happen. Some of the aborted activities were pulled through to the following year (and sometimes still didn’t happen). I’m the sort of person who makes lists but I know that sometimes I have to be flexible and let them go; a summer schedule must never become a tyrant.

This year I am working hard at letting go. If you’ve been following this blog you’ll know that Dylan has been unsettled recently. Everyone involved in his care is trying to work out what is triggering Dylan’s behaviour but as yet we have not been able to fathom it. As Dylan is no longer at school there is no need for a summer schedule this year (his day centre is open all year). Because he has been so unsettled, however, I thought it might help to do some of the things we have done in the past. I therefore drew up a plan for Dylan which included some time at his day centre, some time with me and a summer holiday. Dylan’s social worker expressed concern about my plans to support Dylan alone and to travel to France but I was optimistic; I will get Dylan on a summer schedule, I thought to myself; that will settle him.

Summer 2014

Summer 2014

This week, however, I have accepted that it isn’t wise to travel this summer and have cancelled our holiday; how short-lived my joy at last year’s trip to France turned out to be (you can read about that here). I should only ever make plans I am prepared to break, I tell myself. So I have redrafted the summer schedule to include some less ambitious days at the seaside; there will, hopefully, be other holidays in France. Who knows, though, what the future holds: these recent events remind me to live each opportunity as if it is the last (though on a schedule, naturally).

 

Happy summer!

 

Seagull in St Malo

 

Reference:

Waving Not Drowning: Newsletter (Issue 37, Autumn 2013)

 

All images taken by Liz (the seaside photographs taken while on holiday in Brittany, August 2013).

 

 

Dylan’s Life In Song: music and autism

music 024One of the things that is striking about Dylan’s school reports is their lack of agreement about whether or not he likes music: Dylan loves music; assembly causes Dylan distress; Dylan responds well to music; Dylan is not comfortable in music sessions; Dylan enjoys listening to CDs; Dylan covers his ears. 

In this post I speculate on the reasons for Dylan’s apparently contradictory response to music. Inspired by my participation in a project run by Christy at runningonsober, I include songs selected by Dylan. Christy invited fellow bloggers to tell the story of their lives in ‘six songs and a bonus’ and last week it was my turn (you can listen to my seven songs here). I am including Dylan’s songs in this post not in order to tell his life story but to illustrate his relationship with music.

Auditory hypersensitivity

In a previous post I have written about auditory sensitivity in autism and some of the therapeutic interventions which can be made. Dylan undoubtedly experiences auditory discomfort; he often clamps his right arm over his head, his upper arm held tightly against his right ear and a finger pushed into his left ear. This is canny: as Dylan is left handed it leaves his strong arm free to pull whoever is supporting him out of the situation causing him distress.

As well as being disturbed by a range of environmental sounds (children crying, dogs barking, motorbikes) it is possible that Dylan hears frequencies most of us cannot; the idea that Dylan hears in ultrasound underpins my poem sequence The Bat Detector, for example. I suspect that ‘deep’ background noise (such as heating systems, underground streams and sap through trees) is also audible to Dylan. Other autistic people have reported similar disturbance; some have posted clips on youtube which simulate this experience. Watching these videos is an uncomfortable experience and has helped me to comprehend just how powerful Dylan’s auditory disturbance may be. This hypersensitivity may, I suspect, explain both the pleasure and the pain which Dylan can find in music.

Music as discomfort: environmental noise

Brittany 13 175It is possible, I think, that this backdrop of environmental noise reduces the clarity of music in the same way that it interferes with Dylan’s processing of spoken language. Dylan may find listening to music as uncomfortable as the experience of being spoken to in certain contexts (busy and open spaces, such as assembly halls, for example). Conversely, some environments may be particularly comfortable places for processing music. I’ve noticed, for example, that Dylan enjoys listening to music in the car. While some songs still cause him discomfort, the interior of a car seems to be good for listening. This also seems to be a useful space for Dylan to process language; he often extracts meaning from language more easily in the car. Perhaps the very features of private transport we complain about (sealed in a bubble, isolated from others) are helpful to Dylan.

music 029The ultimate privacy in listening is via headphones. In a previous post I’ve written about the use of headphones to block or clear out background noise, for example via auditory integration therapy. Until he was a teenager the only music which Dylan would listen to (with one exception which I’ll return to) was nursery rhyme audio tapes. When I persuaded him to accept a nursery rhyme CD my daughter offered to put it on an i-pod shuffle for Dylan. This created challenge as well as possibility. Although we could now use music to lessen Dylan’s discomfort in the community, if we didn’t get the choice of music right it would have the opposite effect: delivering music which Dylan found painful directly into his ears was far worse than an uncomfortable environment.

music 014Don’t put anything on there your brother doesn’t like, I instructed my daughter, or anything he doesn’t already know. I would discover her sneaky inclusions on the ipod from time to time as Dylan pulled the ear buds out and let me listen in (usually to a french pop song). One of the introductions my daughter made was crucial, however, in moving Dylan away from nursery rhymes; she had noticed his interest in one of my CDs and put this onto his shuffle. When Dylan first started to bring me the CD  (a collaboration between Elvis Costello and Anne Sofie Von Otter) I thought he was anticipating my behaviour rather than expressing a preference of his own. Later I would realise that it wasn’t that Dylan thought I wanted to listen to it but that he did. Dylan now has this album on CD, i-pod shuffle and i-pad. Is it possible, through this album, to identify the features of music which bring Dylan particular joy?

Music as joy: pitch and key

music 031Part of Dylan’s hypersensitive hearing involves a discriminating ear; I believe he has perfect pitch. Dylan cannot bear the sound of school and amateur choirs. He finds music played through poor equipment painful. He cannot endure piped music through public address systems. This may be partly due to the background noise of electronic equipment but I have seen Dylan react with equal discomfort to poorly pitched acoustic music and a capella singing. Many of Dylan’s musical choices may therefore be determined by the quality of sound; I’m sure the fact Von Otter is classically trained has a bearing on Dylan’s experience.

music 027It isn’t just about pitch though; Dylan may also have particular key preferences. When Dylan was very young  a musicologist, having observed Dylan’s engagement with music one evening declared: I think it’s Eb and Bb he likes – the language of the blues…

Over the years I’ve seen this hunch borne out. Although at home Dylan only listened to nursery rhymes, at primary school he had a jazz blues tape which one of the teachers made for him and which Dylan listened to if he became anxious during the school day. While Dylan didn’t transfer such a resource to other contexts explicitly, he probably benefitted from my daughter playing jazz sax and my penchant for the blues. Among Dylan’s favourite CDs today (though not making it into his final seven) are Bettye LaVette, Nina Simone, Etta James and Ella Fitzgerald.

Feeling the music

There have been a number of cases over the years of autistic children and adults with extraordinary musical talent. This sits quite comfortably in my mind with the gift for number which some autistic people demonstrate; music and mathematics share the same underlying structures. For these purposes, however, I want to focus on people such as Dylan who don’t show any obvious musical gift; while I’ve seen Dylan pick up a pair of drumsticks and keep effortless time, he doesn’t play an instrument. At home he lets me play piano and recorder but draws the line at harmonica; his arm clamps quickly across his head if I so much as pick it up.

music 012Perhaps for this reason it’s taken a while for Dylan to tolerate my Bob Dylan collection. It is only tolerate though: I bought Dylan a copy of the Essential Bob Dylan last Christmas but it’s never been out of its case. Could this be about pitch and key? Is Dylan less enamoured of Bob than Nina because of the way they sound? I don’t think I have led Dylan to one rather than the other; I play them both equally and with equal joy. I could draw this distinction though; I don’t dance to Bob Dylan.

In the last year my Dylan has discovered that he loves to dance. Every evening he chooses some music then holds his arms out to me. When I say ‘dance’ I should qualify this: it is spinning rather than dancing. Dylan takes you by the arms and with his eyes closed he spins clockwise as fast as you are prepared to accompany him. I have never known him become dizzy; he would spin all night if I let him. Every trick I try I cannot last more than one song. It ends with me clutching the table: I’m sorry Dylan mummy’s dizzy. This, then, is music as sensory pleasure: choose a singer with perfect pitch; give her the Ebs and Bbs; lay down a rhythm; and spin, spin, spin.

music 011One of the distinctive features of jazz and blues is syncopation. Syncopation refers to the interruption of expected rhythmic patterns; instead of the beat our ear expects (based on the rhythm already established within a piece) we encounter variety. Miles Hoffman explains this as “a disturbance or interruption of the regular flow of rhythm” through a “placement of rhythmic stresses or accents where they wouldn’t normally occur.” (Hoffman, 1997). Given that autistic people are believed to favour the expected over the unexpected, an enjoyment of syncopation may appear a surprising feature of Dylan’s engagement with the language of music.

A research project exploring the neurological links between language and music has emphasised the parallel structures of conversation and jazz (LaFrance, 2014). Charles Limb, a musician and medic at John Hopkins, mapped the brains of jazz musicians and found that areas of the brain linked to meaning ‘shut down’ during improvisational jazz sessions. Jazz, Limb suggests, is based on structure and syntax rather than semantics: “It doesn’t have propositional elements or specificity of meaning in the same way a word does”. This, Limb argues, is more complicated than language:

If the brain evolved for the purpose of speech, it’s odd that it evolved to a capacity way beyond speech…I have reason to suspect that the auditory brain may have been designed to hear music and speech is a happy byproduct.

Music and feelings

music 015While Dylan’s interest in jazz rhythms may be underpinned by structure and syntax, his song choices also suggest a role for semantics.  As well as the technical issues of acoustics, rhythm, pitch and key, Dylan’s engagement with music appears to be emotional. Just as you and I might associate a particular song with happy or sad times, so Dylan seems to have mapped some of his strongest memories on to music. Only recently have I realised that his refusal to listen to this U2 CD is probably because my ex-husband and I were listening to it at a crucial time in the breakdown of our marriage. Sometimes I cannot work out what the associated memory might be but I’m sure it is there; a Tears for Fears cover we are not able to listen to on a Patti Smith album for example.

Dylan’s songs

music 009When Dylan started taking an interest in music I decided to help him build his own music collection. He only ever buys duplicate copies of my CDs, however. To try and extend Dylan I have bought him different CDs by artists he already knows but if he doesn’t recognise the covers he won’t play them. For Dylan, visual information is an important part of his engagement with music.

This means that Dylan’s seven songs are derived from my collection; his individual preferences are, nonetheless, apparent from the music he chooses. Some of the songs have particularly happy emotional associations for him I think; I’m not sure why he likes others but it could be the rhythm, key or quality of sound. I say a few words about what I think may inform Dylan’s selections. To support Dylan to make his choices I spread a long list of his favourite CDs on the floor (prompting Dylan to add to and subtract from these).

music 008

I then invited him to choose one CD at a time until we had seven. I made a visual group of the seven and gave Dylan an opportunity to make changes (he made one: Edie Brickell and New Bohemians lost out to a compilation blues CD). Here is the final result: Dylan’s seven songs. Enjoy :-)

music 020

Song # 1: Someone Like You by Adele

I would have said Adele 21 was Dylan’s favourite CD so I think this is a secure top spot placing. I suspect that Dylan already knew the album before I acquired it; perhaps he had heard it on the school bus. Dylan particularly likes dancing to Adele. I think he likes all the tracks on the album; I’ve hazarded on this one.

Song # 2: Like an Angel by Anne Sofie Von Otter

Costello and Von Otter’s For The Stars was the first CD Dylan took an interest in. I think he likes the quality of Von Otter’s voice. Like an Angel is a trance-inducing song for Dylan; he can seem close to ecstasy when listening to it.

Song # 3 Shake it Out by Florence and the Machine

Mashee Dylan says to me, Mashee. That’s also what he calls treadmills and cross-trainers; I sometimes wonder what sense Dylan makes of a CD having the same name as the kit in the gym. Perhaps it amuses him. I am a bit surprised Dylan put Florence in 3rd place but I can see why he’d like her voice and the use of orchestral music.

Song # 4: Fields of Gold by Sting

My ex-husband was a fan of Sting and used to play this album a lot. I have a memory of him dancing to it with Dylan in his arms. I bought this CD for myself quite recently after a song on the radio jogged my memory. I was surprised by the way Dylan immediately claimed it and bought a duplicate copy plus a copy for his i-pad. I think he may have a deep memory of dancing with the man he knew for years as his dad.

Song # 5 Nobody’s Baby Now by Nick Cave

Dylan pulled Let Love In off my shelves recently and wanted me to play it. Since then he has been very attached to this album. I’m not sure why but, again, I wonder whether it is a deep memory of my ex-husband who used to play this album. Dylan was insistent that this was the youtube clip he wanted me to use.

Song #6 Night and Day by Billie Holiday

Dylan included a compilation CD of women blues singers in his top seven: lady sings the blues night & day. I’m not sure if he has a favourite song from the collection but I think he’s happy with this one; when I set the clip playing he came running to look. Dylan likes me to play this compilation CD. I think he associates it with good times and dancing.

Song # 7 Hide and Seek by Imogen Heap

I don’t know why Dylan is so attached to Imogen Heap’s album Speak for Yourself. I bought the CD in 2012 after this song was played at the funeral of a friend. It has no connection for Dylan yet this is the song he seems to particularly like. My ex-stepdaughter is called Imogen and I have sometimes wondered if this might explain Dylan’s attachment to the CD; he certainly likes me naming it. Imogen Heap, I say, it’s Imogen Heap. Leep he laughs, Leep.

 

 

References:

  • Adrienne LaFrance (2014) ‘How Brains See Music As Language’  in The Atlantic.
  • Miles Hoffman (1997) Syncopation.

Autism And Alcohol: reflections on an anniversary

The Old Horns, Bradfield

I often mention pubs in my posts about living with autism. Perhaps I should clarify: Dylan’s drink is a pint of blackcurrant cordial made with tap water and served with ice and a straw. Dylan won’t touch anything with bubbles, or even a barely perceptible fizz, nor will he drink anything which is warm or tastes bitter. This leaves only water and non-carbonated soft drinks. As there are also rules about juice (no bits, cloudiness or tropical fruits) Dylan is limited to apple juice at home and blackcurrant when he’s out. There is no danger that he will ever be drunk or addicted to coca cola.

Dylan’s interest in pubs is, I think, primarily social. He enjoys the ambience of a pub garden in summer and an open fire in winter. He likes the quiet hum of voices and the sudden bursts of laughter, the activity at the bar and background music. He might not want to take part in conversation but he likes listening in. While my daughter lived with us Dylan witnessed language as a backdrop to family life but since she moved away Dylan and I often fall to companionable silence; going to the pub satisfies the need we both have to be exposed to language.

~

When we go to the pub I usually order a lime & soda for myself. It’s taken time for me to appreciate – six years in fact – but it tastes good. Although these days I enjoy our pub visits it wasn’t always the case. In fact for a while I avoided them. In England the one thing you can bank on, town or country, is a pub (sometimes several in quick succession). Imagine the effort, then, to cross the road or look away. But I couldn’t trust myself. Not at first.

~

The oldest pub in Sheffield

The Old Queen’s Head, Sheffield

My 18 year old daughter is due to go to University this year. A gifted linguist, she plans to study Spanish in France. I spent a year abroad as an undergraduate but I was older than she is, it was an English-speaking country and I had the support of a UK institution. I understand that my daughter wants to challenge herself by not just learning a language, but learning through it: still, part of me is anxious about her leaving.

She telephoned recently (she lives with her dad) to tell me she had found herself a summer job using her languages. Great I replied, remembering how I had spent the summer between school and university working in a hotel. My enthusiasm waned, however, when she revealed more; the job, it transpired, was in Morocco. Haven’t you got enough to look forward to? I asked her. Isn’t going to live in France adventure enough? In the event she decided not to take the job: right opportunity, wrong time she concluded.

Afterwards I asked myself why I had felt so anxious about the proposal. I had been a bit off-the-page with my own life after all. She’ll fall in love! a colleague had exclaimed when I mentioned my daughter’s plan. She’ll not get to France! I suspect it was this which led me to reflect on how life-changing the summer after leaving school can be.

~

My memory of the time is vivid 35 years on. Plunged into double shifts at a city hotel I discovered there were new rules to follow (and break). I was on the bottom rung covering leave: I had to be chambermaid, chef’s assistant, waitress and barmaid. Nothing had prepared me for this; without structure or sense I needed a role model. My older sister – the hotel manager – had employed me and that summer she mesmerised me; feared but fair, she commanded loyalty and respect.

My sister was also hardly ever without a drink and cigarette. She smoked Dunhill and drank vodka; in her hands these tricks of the trade became impossibly glamorous. At the end of my first week I queued outside her office for my pay packet. As I signed her ledger she asked whether I’d like to join her for a drink in the bar: by the time I left for university I was a regular drinker with a pack a day habit.

~

DSCF1007

Dylan Thomas’ pub, Laugharne

Arriving at university I discovered that my newly-acquired habits eased the anxiety of making friends. When I started writing I found they helped with that too; drafts of a poem became associated with endless drinks and cigarettes. As a poet I was able to embrace smoking and drinking as writerly adornment. This was also useful as smokescreen; alcohol can be an effective way of controlling nerves and in some professions (among classical musicians for example) is commonly used to enhance performance. A drink before a poetry reading, I found, calmed me.

I didn’t reflect, at the time, on my use of alcohol. I certainly didn’t think of it as unusual or consider it a problem. Drinking and smoking were part of an identity I had constructed; this was about being young, free and creative. I don’t think it ever occurred to me that I might be using it to assuage anxiety or relieve stress. Now, having lived alongside Dylan, I would say that he is at the extreme end of a spectrum of anxiety from which many of us suffer. I have never been diagnosed with autism or anxiety but perhaps a proneness to using alcohol is a risk for those with such traits. Maybe Dylan’s anxiety appears so great because he doesn’t control it with the methods which others habitually use.

~

20130714_164902

Waggon and Horses, Langsett

While my relationship with alcohol at university was playful it would quickly become serious. My professional and creative life often brought me into contact with other addictions. It goes with the territory, I told myself. One boyfriend (let’s call him Hans) was diagnosed with alcoholism in his early 30s. With a respectable job it was possible to think that Hans lived clean – at least on 19 days out of every 21. The remaining 48 hours would see Hans bingeing in one of the pubs from which he had not yet been barred. The difficulty for me was accepting those 24 hours as reality not aberration; because they were such a small proportion of our overall time together, it took me a while to realise that the binge was as much a part of Hans as the other 19 days.

Hans tried to stop drinking one summer. I wasn’t sure whether I should stop too, to support him, but my GP observed: you don’t have the drink problem, your boyfriend does. Hans was doing well so we decided to take a holiday in Germany. One day I suggested we visit Dachau; Hans wasn’t keen but gave in.

Der Mass Weizen

Today, we take the lime green S2 line
in the direction of Petershause.
I have chosen, without thinking,
a green cotton blouse embroidered with yellow stars.
Our stop is the one after Karlsfeld,
just past the Ford factory and the big houses
with swimming pools. I hadn’t expected
people to be living here – am surprised
by their laughing gardens as the train rolls by.

~

You have been dry now for ten weeks.
We are on holiday, making our slow way
past mountains, cathedrals, sliding rivers.
You have unpacked your pills, nightly, at each hotel.
You sweat and tremble, pointing to places
you remember.  This is your country -
but unfamiliar, in the heat, to walk so quickly
past the kiosks and bars.

~

For the last bit of this journey we take a bus.
It is full of American voices, Japanese cameras,
a few people wearing headscarves.
It was my idea to come here.
We climb off and stand aside, let others
tramp in lines along a narrow track, the gravel
underfoot unbearable against the silence.
There is no shelter here from the high sun; it burns
through the thin fabric on my shoulders.

~

The crowd troops to the sheds to see for itself
while we walk the perimeter, looking for a gate.
I stare upwards at the barbs along four lines
of wire above our heads, a white concrete tower
with four small windows in its roof.
I stumble; slip as the gravel skitters away
under my smooth-worn soles. Out of water,
our lips begin to crack.

Beside me you are walking, as always,
with a stoop; trying not to be so tall,
as if you have no right to be here.
You lift your anxious eyes to mine and I turn
away, thinking how ragged you look today
with your sunken cheeks. And I wonder, then,
if this is your country; if perhaps you live
with these walls and watchtowers and the gravel
crunching and sliding underfoot.

~

Later, arriving back in Munich too late
to leave by the early evening train,
you head for a Biergarten -
order ein viertal liter und mass weizen.

~

The Cricketers

I didn’t understand at the time but later realised that in the face of horror Hans had anaesthetised himself that day. The incident also made me realise how difficult the road to recovery is. Soon after I would meet a recovering gambler (let’s call him Ash). Two things he told me stay with me. The first is that a gambler needs to place larger and larger bets as the risk involved in losing (or winning) smaller amounts no longer produces an adrenaline rush. This is the other side of the anaesthetic coin; addictive behaviour because you feel too little rather than too much. The second is of Ash’s grandfather (who also liked a flutter) at the kitchen table one day, palms turned up, fingers spread wide: All gone, he said. It’s all gone. That sense of loss is something Ash would often refer to: the emptiness of losing everything (money, job, relationship) to addiction.

What impressed me about Ash was his strength; we would go regularly to the races but he never placed a bet himself. Lots of people start gambling, he observed, but few are able to stop. Recovery was the point, not the addiction. Later, one of my landlords would make the same claim (in relation to mental illness): he had been sectioned and spent time in an institution. In order to get out, he told me, a doctor had certified him sane. Has anyone ever certified you sane? he asked.

~

Recovering (from alcohol, gambling or mental illness) was increasingly attractive. I had quit smoking and drinking while I was pregnant in 1985 but after the baby died I, like Hans, had discovered alcohol as anaesthetic and resumed old habits. In the 90s I had another chance to quit when I was pregnant again. Within months of my daughter being born, however, Dylan was diagnosed autistic. Again I resumed drinking and smoking, this time heavier than before. The summer I left school I had used alcohol to belong. At university I used it as mask. Later I used it to numb myself. Now I would discover the most insidious use of all.

~

DSCF1435

The Ranmoor

Organising child care  is difficult for parents of small children. In the early years life can feel like a never ending night feed. If you have family or willing friends then evenings out can be arranged, though they tend to become planned rather than spontaneous happenings (which, when the time comes, parents may be too tired to enjoy). If your child is autistic, however, all of these challenges are greater; it is more difficult to find someone to babysit and considerably less likely that you will have the energy for a night out. Furthermore, these difficulties can increase rather than lessen as your child gets older; while my mum was prepared to look after Dylan when he was little, she was less confident as he got older.

I remember feeling hard done by, when Dylan was younger, if my husband and I couldn’t get to an event or had to decline a social invitation. In time, however, staying home became easier and less stressful. While this began as a practical response to circumstance, declining social events presented itself as preferable once we’d established a routine of relaxing at home. Alcohol – a flexible and reliable reward – quite naturally became part of this routine.

The need to spend more than usual amounts of time at home can encourage a gradual increase in the routine use of alcohol. While this was never dramatic, given the context of caring responsibilities, the cumulative effect was significant. Reference is often made to the ‘invisibility’ of alcoholism among steady users in white collar professions; those people who never appear drunk or incapacitated by alcohol because they have become accustomed to consuming excessive units each week as part of their working life. I suspect that some carers may find themselves in a similar position, albeit via rather different routines.

~

Kent August 2012 170

Somewhere in Kent

Perhaps I am painting it darker than it really was. I never poured a drink before 6pm in the evening. I rarely drank more than three quarters of a bottle of wine. I was never drunk, ill or incapable in the evenings or the next day (though I was frequently tired). I never thought of my relationship with alcohol as problematic and I would certainly never have called myself an alcoholic. In fact my problem, in so far as I admitted one, was not alcohol but nicotine.

I had tried everything I could think of to quit. Patches (zero impact). Chewing gum (my skin broke out). Zyban (four unbearable days without sleep). Hypnotism (I was awake throughout). Self-help books (I was too cynical). The Russian mystic in Brookline, Massachusetts (he was good but I wasn’t).

I never meant to give up alcohol but in the end it seemed the only way to stop the freight train. ‘The freight train’ was my description of a phenomenon I would experience roughly once a month when I would spend the day flaked out on the sofa feeling extraordinarily tired. Only with huge effort and will could I attend to the bare minimum (providing food and ensuring Dylan was safe). It was, I used to say, as if I’ve been hit by a freight train. The impact was comparable to a day off sick. I now think that this was probably the cumulative effect of regular daily alcohol consumption; never having so much as to be incapable, but topping up and topping up until I was just dog tired. In the end I couldn’t bear one more hit; I had to get off those tracks.

~

The Norfolk Arms, Ringinglow

19th July 2008. School holidays just beginning. My daughter in Scotland for the summer with her dad. Freight train day. Was this exhaustion at the end of a busy semester? Or me succumbing to the space to relax? I was tired of excuses. I remember my slow walk to the kitchen. I poured a bottle of wine down the sink (I can still visualise the red swirl and hear the glug glug) then threw a packet of Marlborough Lights (18 left) in the bin. Not drinking, I told myself, could be part of stopping smoking. Perhaps my attempts to quit cigarettes were failing because alcohol weakened my resolve. I would drink again, I promised myself, when I’d conquered the nicotine.

And so I embarked on my first summer. It helped that my daughter was away; Dylan couldn’t ask me questions or enquire how I was feeling. I was glad of that: I could only do this in complete silence. Pubs were out of bounds. I declined invitations to events I thought might be tricky. I turned down dates with men who smoked and drank. I didn’t trust myself; I might reach for their packet or say oh go on then if told to have a ‘proper drink’. That summer was hard. A family holiday in Cornwall at the end of it was probably as close as I came to failing. But I did it. I coped. I had discovered the Will Power Road.

~

The Moon, Stoney Middleton

The Moon, Stoney Middleton

Six years later I am comfortable in pubs. I don’t falter or flinch. I trust myself. I haven’t reintroduced alcohol as I thought I would; I tell myself one day I will but I doubt this. What I noticed, a month after my double quit, was that I felt better for not drinking. I’m better for not smoking too but the effects of not drinking are more obvious. No more freight trains. More energy. Clear head.

I still don’t use the term alcoholic. ‘Wine’ Dylan says sometimes, pointing at the vinegar bottles in the fridge or to a display in our local shop. He didn’t have many words when he was young but this was one of them. I might tell myself that I didn’t have a drink problem – wasn’t an alcoholic – but my son’s quirky core vocabulary ought to raise at least one of my eyebrows.

Since I’ve kept this blog I’ve encountered a number of people who write about the impact of alcoholism and recovery on their life; more than any other, these are the blogs which move me. They have also helped me to reflect on my own experience and the possible links between alcohol and autism. In this post I have suggested that some people may use alcohol to manage conditions associated with autistic spectrum condition such as anxiety or the need for control. I have also speculated that parents and carers may be vulnerable to increased routine use of alcohol due to the emotional and practical circumstances of caring. Hopefully I have also, however, managed to convey my admiration for those who confront and defeat an addictive relationship. As Maya Angelou says:

You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.

The Sir William, Grindleford

The Sir William, Grindleford

Postscript:

This post has been a bit different from my usual pieces, glancing only tangentially at autism. Thank you for reading and for supporting my 6th anniversary celebration :-)

Reference:

‘Der Mass Weizen’ was published in my first book, Walking On Tiptoe (Staple, 1998) and also included in the re-issued version of that book Walking on Tiptoe and Other Poems (Bluechrome, 2007).

 

 

 

Behavioural Interventions In Autism: holding the middle ground

In this post I resume my review of early intervention in autism. Previously I have offered an overview of interventions, based on the therapies which I used with Dylan, and categorised these into four groups: sensory; dietary and medical; behavioural; and educational. Earlier posts have reflected on sensory and dietary/medical interventions; this post considers behavioural approaches.

The middle ground

I was chatting to the father of an autistic child recently about the behavioural programme he is using with his son. When I told him that I had used behaviourist and non-behaviourist approaches when Dylan was a child he expressed surprise: There isn’t usually any middle ground, he observed. People seem to be either passionately in favour or passionately against.

 He is right: behavioural interventions more than any other incite strong feelings among parents and professionals. When Dylan was diagnosed in 1996 there was growing interest, in England, in therapies based on behaviourist philosophy. Some families embraced these programmes while others chose to have nothing to do with them. Twenty years later the behaviourist pioneers have established schools and services which are still used with passion and commitment by some families. The lobby against such programmes, however, continues to be equally vociferous. How could I lay claim to both lands? To explain the view from the middle I first need to consider the ground it lies between.

Behaviourism and constructivism

Behaviourism is the label given to theories of learning which are based on changes which can be observed. The Russian Psychologist Pavlov demonstrated, in the 1920s, that it was possible to train a dog to respond to a given stimulus (in this case to salivate when a tuning fork was sounded) a process known as classical conditioning. Pavlov’s Dog became the foundation for experiments to determine whether children’s behaviour could be shaped in a similar way.

In the 1930s Edward Thorndike and B.F. Skinner developed the concept of operant conditioning to describe intentional rather than involuntary behaviour, i.e. learning that involves a decision rather than a physiological response such as salivation. Operant conditioning is based on the idea that consequences determine whether or not a person will repeat a behaviour; a system of reinforcers and punishers are used to shape a child’s actions away from inappropriate and towards target behaviour. Reinforcers strengthen behaviour and can be either positive (doing something which leads to a reward) or negative (avoiding something unpleasant). Punishers, meanwhile, are used to weaken behaviour and involve a penalty or the removal of privileges.

Other theorists, meanwhile, emphasised the social rather than behavioural dimensions of learning. Also in the 1930s, Lev Vygotsky described the way in which knowledge is built collectively among learners, a process referred to as social constructivism. According to constructivist theory, learning is personal and active; our knowledge builds on what we already know and is influenced by the communities in which we learn. Learning, Vygotsky believed, is collaborative and dialogic; our interactions are experiences from which we emerge changed. This notion of knowledge as shared and co-constructed emphasises the role of groups in educational processes.

As a great deal of school-based learning is social there is considerable potential for autistic children to encounter barriers in the education system. Even before an autistic child starts school, however, the consequences of not engaging in social learning are evident; Dylan did not learn to dress, feed himself, use the toilet or play with toys through his interactions with others. Because behaviourist strategies are based on clear consequences in response to observable behaviour, rather than on the emotional protocols involved in social learning, they are felt to be a potentially more effective approach to educating autistic children.

 Parent and professional (I)

I have found it useful when discussing the behaviourist-constructivist spectrum with students to draw a distinction between education and training. Training, I suggest, is something which a person needs in order to carry out a procedure; we train people to answer the telephone in a call centre, use a piece of equipment or file papers. Education, by contrast, requires people to think critically about skills; instead of simply filing the paper in the correct drawer, we might re-write, re-categorise, disseminate or destroy the paper. Education is thus about promoting thinking skills and enabling us to act creatively in response to a particular set of circumstances.

There is debate about whether preparation for certain roles requires education or training. In my own field of education, for example, some people believe students can be trained to teach as you might learn a craft, while others believe teachers must be educated. You can tell a lot about someone who works in the sector by their language. If they refer to ‘teacher education’ then they are probably committed to promoting critical reflection on practice and to encouraging students to question their assumptions about schooling and society. The discourse of teacher training, by contrast, focuses on achievement against a set of teacher competences. I have always considered myself an educator rather than a trainer and drawn on constructivist rather than behaviourist approaches in my own teaching. My professional practice was therefore to have a significant impact on my response to intervention programmes when Dylan was diagnosed.

 The professional: non-directive therapy

Christmas 2013 028My professional position led me, initially, to reject behaviourist approaches; I opted, instead, for a therapeutic response as far removed as you could get from behaviourism. Non-directive play therapy emphasised the importance of following your child’s lead; it required me to enter Dylan’s world in order to understand his experience and win his trust. Mirroring Dylan’s behaviour involved me spending time alongside him; I would sprawl on the floor copying his actions or run in circles around the park with him, hands flapping.

Non-directive therapy, it is suggested, supports the relationship between parent and child by enabling positive interaction. Some of the pre-requisites for communication, such as turn-taking and imitation, can be promoted through non-directive approaches to play. For example if Dylan threw a toy car across the room, rather than reprimand him for throwing I would throw a toy too. The intention would be to get Dylan’s attention: hopefully I would be able to re-shape the behaviour so that we were throwing soft toys instead of cars, or throwing more gently or into a different space; the aim would be to encourage throwing in turn in order to create a communicative rhythm between us. The key to the approach is to take the child’s lead and not to direct; this is quite unlike a behaviourist approach where the aim is to promote a pre-determined target behaviour.

I have reflected a little on my experience of non-directive therapy in a previous post. One of my key observations is that it made little difference to Dylan’s behaviour but had an enormous impact on me; non-directive approaches enabled me to walk in Dylan’s shoes and thus to develop a better understanding of his world. I think that this helped to strengthen our relationship. I don’ t believe, however, that there was any measurable change in Dylan’s behaviours while I was working within this non-directive framework. On all key measures – toilet training, feeding, dressing, communication, play, accessing public spaces – life was a difficult and challenging as ever.

One day I had cause to reflect. Families with autistic children in my city had been given free tickets to the cinema by a local charity and I took Dylan along. Immersed in my non-directive therapy I followed Dylan out to the front of the auditorium when he ran off. People were still taking their seats. I wasn’t confident that I could get Dylan to sit down. I sprawled next to him by the big screen, squirming around on the floor. Perhaps he’d calm down I thought. Maybe this way I could persuade him onto a seat. Suddenly I heard a voice and looking up saw a face I vaguely recognised. Hello Elizabeth. Fancy seeing you here. I see you’ve got your hands full. A word of advice if I may: it’s all about discipline. If I were you, I’d get on with it. I couldn’t quite place her – had to ask her name. It turned out to be somebody I’d gone to school with; she had three children now, the youngest autistic. He was doing well, she told me, in mainstream school but that was all down to the strict discipline and direction the family had built around him.

 Parent and professional (II)

 What if she was right? Could my rigid adherence to an approach I felt comfortable with be unhelpful to Dylan? While it was natural that my work as an educator would influence the way I chose to work with Dylan, I was no longer just an educator; I was the parent of an autistic child. Could I accept that my preferred approach to learning may not be appropriate for Dylan?

Having children of your own can present some interesting challenges; almost inevitably your practice develops to take account of parental as well as professional experience. If your child is disabled, however, the impact on practice can be significant. For me, the interplay of parental and professional knowledge could involve more than a few amendments to my lecture notes: repositioning myself on the behaviourist-constructivist spectrum would strike at the heart of my professional values. I decided, however, that I had to at least keep an open mind.

The parent: behaviour modification

So in 1997 I attended a conference in London organised by PEACH (Parents for the Education of Autistic Children) a group championing the Lovaas approach. The programme involved working intensively with children for 30-40 hours a week on a 1:1 basis as soon as possible after diagnosis. Based on behaviourist philosophy (specifically Applied Behaviour Analysis) the Lovaas method used reinforcers as part of a programme which built step by step to support the development of communication and re-shape behaviour.

I was uncomfortable at the conference. I didn’t like watching the children who were paraded as ‘proof’ that the approach worked. The atmosphere felt more like a rally than a conference; there were celebrations and exhortations, appeals and promises. But there were a couple of presentations which I found interesting, particularly one by Nina Lovaas which focused on adaptations to the programme which might be required for more classically autistic children who are non-verbal. Although it was still early days for Dylan my gut instinct was that he had a similar profile to the children Nina Lovaas described. On the train home I decided I would trial an adapted behaviourist programme based on what I had heard.

Dolly mixtures and jelly tots

dolly bestbritishsweets.co.ukI took a career break, telling myself that if I didn’t I might regret it one day; maybe I could make a difference. We weren’t in a position to hire the team of aides who would usually be employed to help deliver the programme so I did it by myself. As I’d been used to working full time this wasn’t too much of a shock; I simply exchanged paid work for work with Dylan.

My overall impression of that time is of exhaustion (in another post I’ve shared a poem, Blackbird, in which I attempt to capture some of these emotions). One clear memory I have is of an incident one morning. I was focusing on the development of non-verbal communication through imitation (touch nose, clap, hands in the air, wave, stamp feet, blow). It might not sound challenging but for a three year old child who struggled to remain seated at a chair let alone observe and copy actions it was hard work. The reinforcers (a pocketful of dolly mixtures and jelly tots) were critical. Dylan loved sweets. Once he realised there could be a steady supply by copying me he vaguely obliged. I say ‘vaguely’ because the actions were sloppy; if Dylan lifted his hand somewhere in the region of his face for ‘touch nose’ he would get his dolly mixture. Clapping was the suggestion of hands coming together. Any attempt to observe and copy me was rewarded with a reinforcer from my pocket.

tots bestbritishsweets.co.ukOn this particular morning when I fetched Dylan into the room and gestured to the chair he looked at me then eyed my pockets. In quick sequence he lifted his arms above his head, touched his nose and clapped his hands. I stared at him in shock. He did it again, this time more urgently. Dylan wasn’t sure which action I wanted but keen for a sweet, like Pavlov’s Dog, he performed. I could not continue with this, I thought to myself; it was training and I did not want a performing seal.

The middle way

Later I would soften this position. Although I abandoned Lovaas-inspired intervention I built some of its features into a home education programme I designed for Dylan (about more of which in a future post). I also came to accept that there are areas where training is useful and sometimes necessary; toileting, eating with cutlery, dressing and accessing certain public spaces for example. I therefore drew eclectically on behaviourist and non-directive strategies depending on target and context.

dolly the pinksweetshop.co.ukIn educational settings, however, I resisted behaviourist approaches and while Dylan was at school I insisted on a ‘no food reward’ policy. Because Dylan doesn’t respond to social motivators, food is the only viable reward; while I am prepared to use it sparingly I am uncomfortable with the routine use of sweets. I was actually more comfortable using behaviourist approaches with my daughter when she was young; the reason for this is that I could use social reinforcers with her (‘if you want a sleepover you’ll have to tidy your room’) in a way that I couldn’t with Dylan. The most effective use of behaviourist strategies, I think, employs such motivators; in this sense social learning is actually at the heart of many behaviourist programmes.

While I have used behaviourist approaches only lightly with Dylan I would not hesitate to use them more extensively with a child for whom social reinforcers were acceptable. This raises the issue I keep coming back to that an appropriate intervention for one autistic child will not be the right choice for another. As well as autistic children presenting differently from each other, some autistic children may present differently over time, responding to alternative reinforcers as they get older. At 20, however, Dylan is no more likely to accept a social reinforcer than he was at three; he is not motivated by anything except food and appears not to understand reinforcers based on the avoidance of something negative. As far as punishers are concerned, Dylan doesn’t understand the psychology of the withdrawal of a reward or the concept of penalty; he appears not to be concerned by the impact of his actions on other people nor does he seek the good opinion of others. The extent to which I can orchestrate consequences in order to shape Dylan’s behaviour is clearly limited by this profile.

The baby and the bath water

jelly bestbritishsweets.co.ukIn an earlier post I suggested that choice of therapy depends on the child, parent, discourse and opportunity. While just one of these factors may be relevant for some interventions, behavioural approaches require that all of these be considered. Firstly, the extent to which a child responds to reinforcers will determine the outcomes of the programme. Secondly, the feelings and beliefs of the caregiver are crucial as the programmes are intensive and require absolute commitment. Thirdly, it may not always be possible to implement a programme given the economic as well as emotional investment required.

Finally, and perhaps crucially, the decision to adopt a behavioural programme involves parents in negotiating powerful and competing philosophical discourses. Behaviourist interventions incite strong feelings among parents and educators; this has always been the case but is perhaps more so today than 20 years ago. We now know more about how it feels to be autistic and we have more respect for the behavioural differences which can arise from autistic neurology (alternative responses to sensory stimuli for example). One of the difficulties with behavioural programmes is that they promote norms of behaviour which do not consider (indeed which aim to reduce) this ‘otherness’. It could thus be argued that behaviourist programmes are positioned within a deficit framework in that they aim to ‘fix’ autistic children.

While I understand the tendency to line up in favour or against such programmes I wonder whether we might sometimes be in danger of throwing the baby out with the bath water. Occupying the middle ground promotes eclecticism; selecting strategically from a range of approaches, and adapting these to support my personal principles and beliefs, has turned out to be the most comfortable place for me.

*

Other posts in this series:

Images:

Portraits of educational thinkers are via wikipedia; images of sweets are via bestbritishsweet.co.uk and thepinksweetshop.co.uk.