What Difference Did It Make? Reflections on autism and early intervention

I quite often hear American friends on social media referring to ‘weighted blankets’ as a great resource to use with their children or, in the case of autistic adults, themselves. Intrigued, I searched for a UK supplier recently and ordered a lap and shoulder pad to trial with Dylan (well actually I bought the shoulder pad for myself).

Another thing I did recently was make Dylan a countdown chart to his birthday. I’d mentioned his birthday to him one morning, looking ahead to it a couple of weeks, and when we went to the supermarket later that day Dylan tried to buy a packet of candles and a cake. I struggled to get Dylan to put these back and later, regretting the incident and my part in it, I drew Dylan a simple chart showing how many ‘sleeps’ he had to wait. This is the sort of visual aid that has been used with Dylan in one form or another all his life.

These two objects – the innovative weighted products and the old faithful countdown chart – led me to reflect on the various interventions I have used with Dylan in the 18 years since he was diagnosed as autistic. I recalled that in just the pre-school period, i.e. within the first three years of diagnosis, I had trialled (in roughly chronological order) the following interventions and approaches:

• non-directive play therapy
• LOVAAS behavioural therapy
• holding therapy
• gluten and casein-free diet
• Auditory Integration Training
• video teaching
• melatonin
• ritalin
• homeopathy
• mega-vitamin therapy
• TEACCH
• makaton
• PECS

During this time I also visited the Options Institute in Massachusetts, attended UK conferences, events and training courses and between 1997 and 1999 (when Dylan was aged three to five) gave up paid employment in order to work intensively with him on a home education programme. The only thing I didn’t get around to doing during this time was swimming with dolphins.

I’m struck, now, by the frantic and eclectic nature of this activity. Just reading the list exhausts me. How did I find the time for all that, especially with a new baby? Did I care that the approaches I was trialling represented different philosophical positions? Was it a case of being prepared to try anything? Did I believe in everything or nothing? What did I imagine would be the impact on Dylan of all this activity? As I pinned up the countdown chart the other week it occurred to me that 18 years later I am still working on some of the same skills with Dylan. What difference, I ask in this post, did those early interventions make?

‘The Early Bird Catches the Worm’

image @telegraph.co.uk

image @telegraph.co.uk

There is no doubt that the years after early diagnosis are hard; as well as adjusting to the emotional impact I remember struggling to manage the practical implications of caring for Dylan. Coping with the difficulties of toileting, sleeping and feeding in particular took their toll on my family. Dylan is quite severely affected by his disability and this has meant that almost every developmental step has been demanding, difficult and exhausting to take. There was a time when it wasn’t possible to involve Dylan in family life or everyday activities outside the home. Events such as shopping trips, visiting or errands were impossible. Changes in lifestyle in order to accommodate Dylan and his needs (and for him to accommodate us) followed slowly. Gradually we learned to juggle family life and commitments in order to manage those difficult early years.

If someone had told me then that Dylan would make progress – slow and idiosyncratic but progress nonetheless – that would have helped enormously. I think in those early days I imagined that Dylan would get bigger but would otherwise stay the same. It seemed that the only thing that might make a difference to this (short of a miracle) was me. Early intervention, I was told, was crucial. The advice from organisations such as the National Autistic Society (NAS) was that the earlier you started work with your child the better; ‘Early Bird’, an NAS programme at the time, promoted the idea that a swift response to diagnosis could have a positive influence on later outcomes. This advice is still promoted with parents. Only this week I read that researchers at the University of California have identified brain abnormalities which they suggest reinforce the importance of early intervention; the patchy nature of the abnormalities, the scientists claim, may explain why some autistic toddlers show signs of improvement if treated early enough (Briggs, 2014).

early 001If someone tells you that the main thing that is going to make a difference to the progress of your autistic child is you, it has a profound impact on how you feel about your role as parent. While all parents like to believe they make a difference to their child’s development the stakes seem particularly high following an autism diagnosis. As a new parent (new not just to autism but to parenting) I tended to follow guidelines and advice. I had read Penelope Leach’s Baby & Child while waiting for Dylan to be born and after his birth I had read along chapter by chapter as he got older. Now I relegated Leach to the back of the cupboard and focussed my efforts on ‘early intervention’.

imagesJP8ENTPGThe problem, though, was that no one could say what form this early intervention should take. How should we go about catching this worm? I remember the consultant who confirmed Dylan’s autism diagnosis telling me that the only thing he had ever known make a difference was love: go home and go on loving your child was his advice to me. There was, however, a clamour of parents, professionals and organisations on the newly-emerging Internet claiming treatments and miracle cures for autism. Parents of newly-diagnosed children are particularly vulnerable to these ‘rescue narratives’ because they feel it is their responsibility to do anything they can to improve the prognosis for their children. In particular, the possibility that you might be able to restore the world to the way it was before diagnosis can be irresistible. So even if I wasn’t sure what would make a difference, the dizzying activity made me feel better: at least I was doing something, keeping busy, trying my best.

Intervention in Hindsight

Although I still look for ideas to try with Dylan it is not with the desperation or dreams which characterised my search for treatments in the aftermath of his diagnosis. Then, because I didn’t know what might help Dylan or what I preferred, I tried everything I could. Now I have a better sense of what is likely to help Dylan and what we’re both comfortable with. My expectations are realistic: I know what the interventions are likely to help with and what they can’t achieve. Also, importantly, I’m no longer looking for a cure.

Over the next few posts I will offer reflections on my experience of early intervention during the pre-school years. I’m focusing specifically on this period as it is a time when parents are vulnerable to the idea that they should be doing something to help their child but are also often most alone. In reviewing early intervention I will use the following categories which I’ve found useful in thinking about my own practice:

  • Sensory Adjustments
  • Medical Trials
  • Dietary Interventions
  • Behaviour Modifications
  • Educational Programmes

Next week I will reflect on the sensory interventions I trialled with Dylan and subsequent posts will consider the dietary/medical,  behavioural and educational programmes I adopted in the years following diagnosis.

As I reflect on interventions and evaluate their contribution to Dylan’s development I will ask what choices I would make now, with hindsight. Decisions about interventions (including doing nothing) are not straightforward and are influenced by a range of factors. The most obvious influence on the choice of intervention is the child; the spectrum nature of autism means that what is helpful for one child may not be appropriate for another. As well as being determined by the child, however, the choice of intervention is affected by the caregivers’ feelings and beliefs. Parents embark on their own journey following an autism diagnosis and will be ready to embrace different options at different times. Society’s perspective on autism (i.e. the ‘dominant discourse’ ) also affects the options for intervention following a diagnosis. Attitudes to autism in the last 10-20 years have been transformed by research, and the testimony of autistic people, and this has had a significant impact on the interventions which we now consider acceptable. Finally, practical considerations (such as resources and family context) and opportunity (e.g. the availability of therapies) will play a part.

These four factors (child, parent, discourse and opportunity) combine to determine the choices which parents make. Because my reflections are based on Dylan they will be specific to a child presenting with a learning disability as well as autism. In reviewing events 18 years after my son was diagnosed I am intentionally reflecting on my feelings about intervention at different points in my journey as a parent. Society’s understanding of autism has changed since Dylan was diagnosed and some of the approaches which were current in the 90s (and which I used) have since been discredited. The options available to parents today are also different to those which I encountered 18 years ago; in particular, developments in technology have transformed the range of possible responses to children on the spectrum (e.g. through i-pads and Facilitated Communication).

Even with these changes in discourse and opportunity the categories of intervention I identify above seem to me to have remained constant. By reviewing experience in relation to these categories I hope to focus on the underlying philosophy of intervention rather than the nuts and bolts of individual therapies. Writing the posts may change my thinking but I imagine I’ll argue for a primarily sensory-based approach in the early years with non-directive and visual support. Throwing everything at your child, as I did when Dylan was first diagnosed, is exhausting and helps no one. I’ll suggest that some interventions may be useful but are better left until later. Part of the trick, I think, is assessing a child’s readiness for a particular intervention. Leach is not entirely useless; some of the regular stages of child development may still be relevant and recognising these, and being ready to respond with an appropriate intervention, can be important.

The Worm of Self

black3

image @ itv.com

Something else which I will reflect on in upcoming posts is unexpected outcomes. I don’t think the various activities and trials I embarked on after Dylan’s diagnosis made any real difference to him during that time, but those years helped me to understand and become close to him in a way I might not have otherwise. Looking back, the early years were crucial to my development; I was the one who had to change so that I could understand Dylan’s world and re-think my parenting. In this way, the significance of early intervention may lie in the difference it makes to parents rather than to children: the ‘worm’ which parents are urged to be quick to catch may perhaps be found within themselves.

 

References:

Briggs, H. (2014) Autism ‘Begins Long Before Birth’ BBC News, 27/03/2014
http://www.bbc.co.uk/news/health-26750786

Leach, P. (1989) Baby & Child: From Birth to Five Penguin

 

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17 thoughts on “What Difference Did It Make? Reflections on autism and early intervention

  1. This is very powerful. As a parent of two children who live with mental illness– both with anxiety and one with a particularly nasty combination of anxiety and depression– I can very much relate to the experience of wanting to try anything and everything in the hopes that something will help. Your reflection on the extent to which the years of intervention efforts have changed you also resonated. My eldest daughter’s depression has in particular taught me a great deal about patience, listening, and adjusting my expectations. I’m a firm believer that all we can ever expect of ourselves is to act on the best information we have available in the moment. And I try not to beat myself up over all the times I haven’t gotten it quite right.

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    • Hi MRM – it’s good to hear your broader perspective on parenting. You’re right about getting it wrong – I have done this more in relation to my daughter than Dylan I think. Like you I try to reassure myself that I did the best I could at the time. What sense our children make of what we did or didn’t do? Well, that’s difficult. I’ve no idea what Dylan remembers of the early years but I imagine quite a lot. It’s hard for me to think that when I was trying to help I may have actually made him unhappy – but at the same time there is no trial without error and I don’t see how we can do anything without sometimes getting it wrong.

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  2. Outstanding…this is something we “oldsters” rarely talk about. My Ben is probably the new SCD (Social Communication Disorder in the DSM-5 book in America, not considered autism, per se.) Yet, I still did many of the same things that you did. I didn’t do dolphin therapy, but I did do hippotherapy (horses). Holding therapy that I did gives me nightmares now. Lots of mistakes, but I never gave up. I wasn’t wise or kind enough to be changed early on.That came from a nagging sense that while they were praying for Ben at Bible Study, I had the distinct notion it was me, not Ben that needed to change. So much on little shoulders…

    I often wonder if the anxiety caused by losing touch with my natural mothering skills and looking to experts didn’t cause more damage than it helped. I’ll never know, but things are far better now since I’m back to nature, so to speak. I really loved this, and look forward to more!

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    • Hi there – good to hear from you. That was exactly the thought I had – that we rarely hear the ‘long view’ from oldsters. Like you I’m disturbed by holding therapy now – will write about that next time. Your observation about losing touch with natural mothering skills is fascinating – I have sometimes thought of the experience as an ‘unmothering’ of me. How interesting – will think more about that… Glad you enjoyed the post – thanks for reading, Liz

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  3. I still read your wonderful posts Liz and am looking forward to the other ones that are coming up. You have such an elegant way of integrating the personal and the philosophical in your writing and it gives me new insights into both my own experience as sibling and my parents” experiences. Thankyou!

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    • That’s so nice of you to say Joanna – thank you. I’m glad to hear you’re reading along. Actually I thought of you and your dad while writing my most recent post, thinking that your family would no doubt have some stories to tell from those long ago early years. I’ve just been watching the Horizon programme with Uta Frith which also transported me back to those days in places (Sally Ann dolls etc). Hope all is well, regards to your dad, Liz…

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      • I sent M a link to this post and he emailed back to say he had forwarded to lots of people. The only problem with blogging is that unless people say ‘hi’ one has no idea who is reading the posts. So I thought I should mention in case he says nothing. He keeps asking me how I know you and have I met you and reminds me of the poem you kindly let him include in his bat anthology. I haven’t watched the Horizon yet. Tim is currently embarked on working with a SALT speech therapist who M and S, my sister have organized. On with late life interventions etc….

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      • Hi Joanna – thanks for telling me! You’re right, unless people say hello you’ve no idea who is reading. I did notice there was a spike of interest in the blog recently then yesterday a friend in the US contacted me to say she has been reading, so that will explain some of the US hits, and it sounds like some thanks to you and your dad passing the link on. Thank you. I’m conscious of the untapped expertise out there, and untold stories, particularly from older parents and carers. Your reference to late life SALT for Tim is interesting – I am increasingly convinced that Dylan is just getting ready now for more focused and purposeful SALT. I did a refresher makaton course the other week and have found it really helpful – I did the course when Dylan was very young but he really had no interest in signing then. Now he is copying me and seems to really enjoy me using and teaching him some signs. The makaton teacher is very willing to get involved so I may end up doing what M and S are doing – later life intervention!

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  4. Having just spent what has felt like a year going through Cognitive Behaviour Therapy with my daughter a great deal of what you say has hit home with me. There were days I didn’t see the point, I felt it was more for me than her. Days were it felt we were getting somewhere. I do think I understand her a bit more because of going through the process. Ultimately I think you realise there is no magic therapy or button to press to make things “normal”. This is who she is and we both have to learn strategies to help her cope, manage her anxiety and help her to be happy.

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    • Hi Tinc – interesting to hear you’ve been trying CBT. I’m not keen on it myself but know people who’ve found it helpful, especially with anxiety. I so agree with your final sentence sentiments :-)

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