Mumsnet is launching a new campaign today called This Is My Child. There have already been a couple of national media articles about it in the Guardian and on the BBC website. I was asked to write a guest blog post about going out with Archie which can be read here.
The aim of the campaign is to challenge negative attitudes towards those with disabilities and bust a few myths (such as autism is just an excuse for poor behaviour). Being run by Mumsnet it has a chance of reaching a wide audience and I hope educates a few, or even many. In the early days and even sometimes now, being surrounded by a sympathetic general public may have saved my blood pressure or tears on more than one occasion.
This is one aspect of an awareness campaign. Over the years my own drive to raise awareness has changed a little. Initially I just wanted people to know and to understand what life was like with autism, and to cut us all some slack. Now it’s a little different. I want people to understand that Archie is someone worth knowing. He has a great sense of humour (yep, despite that severe autism). He’s a thrill seeker (roller coasters, and he surfs much bigger waves than me) and he’s intelligent. Faced with the behaviour of someone with severe autism this last point can be hard to understand – to be fair it took me a long time to realise just how clever Archie is. His behaviour does hide what is going on inside, although with the talker and the computer it’s getting easier for him to demonstrate that there is quite a lot going on in there. The publication of books such as The Reason I Jump help spread this message of unrecognised intelligence. As previously mentioned a writer/director friend and I have developed a film project that tells the story of a young person, not Archie but not unlike him and his blossoming into living a full life where his abilities are recognised and valued. The script has been read (and loved) by some well known and talented actors who are keen to come on board. Like many film projects funding is an issue, so, if you fancy funding a film please get in touch.
A general recognition of Archie and others like him, having lives worth living is perhaps my biggest wish for now. If people approached those with disabilities with this understanding things might change. The Mumsent This Is My Child campaign is a step in the right direction.
Archie has always been good a learning nouns. When he was two, and saw his first speech and language therapist she devised a little posting game. We made a postbox out of a shoe box and Archie would post pictures through the slot with me saying the name as he did. This then progressed to him having to choose the correct picture from a selection to post. He loved this game and quickly learned hundreds of nouns in this way (verbs were a different matter).
The one exception to this has been body parts. Head, eyes, mouth, nose, hands, feet, legs and arms were easily mastered, but everything else has been a bit of a struggle. Even now if I ask Archie to show me his chest he’ll point to his back, if I ask to be shown an elbow he might point to his shoulder or his tummy. I suppose heads are more discrete and more obvious that elbows which don’t really have an ending or a beginning, but I have wondered for a while whether there has been something additional causing problems. I have read pretty much everything I can find written by people with non-verbal autism and descriptions of difficulties of being aware of where a body is in space are common. It is well worth reading Autism and the Myth of the Person Alone anyway, but in Lucy Blackman’s chapter, Reflections on Language, she writes: I deduce that in childhood I had real problems in knowing exactly where my connectional limbs and trunk were, where they would move to next, and even more frighteningly, where they had last been positioned. Naoki Higashida in The Reason I Jump says: In my gym class, the teacher tells me to do things like ‘Stretch your arms’ and ‘Bend your knees!’ But I don’t always know what my arms and legs are up to, not exactly. For me, I have no clear sensation of where my arms and legs are attached, or how to make them do what I’m telling them to do. It’s as if my limbs are a mermaid’s rubbery tail. Again in Autism and the Myth of the Person Alone, Naoko says: I could not point at objects for many reasons. The most important reason is that I had very little sensation of my body. So to learn the techniques of moving my right hand needed control over the ball and socket joint of the shoulder and then the hinge joint of my elbow and finally fold the other fingers and keep the point finger out.
These accounts act as a reminder to me that when Archie is struggling to learn vocabulary it may be because he is experiencing the world and his position in it in a way that is completely alien to me.
Many of those currently reading The Reason I Jump may not be aware that Naoki learned to type using a controversial method known as facilitated communication. In common with many of those with severe autism who type independently he needed a period of physical support. He describes the process by which he learned to write and point independently, and why he needed this support in this mini lecture. His is an increasingly common story, and as the word spreads and more people try this form of communication then we are likely to come across others saying the same thing.
The official (and negative) view of faciliated communication can be found here or on Ben Goldacre’s Bad Science blog. My own view is that we shouldn’t be throwing the baby out with the bathwater and the people who now type independently and who have said they needed a period of physical support to get to that stage should not be ignored. They have worked hard to develop their voice and we should be listening to them. There is a balance to be found between providing necessary support and working towards independence. I do believe that working towards increasing independence is important because frankly, many discount a voice that is not fully independent.
I was reading The Reason I Jump at breakfast this morning and this passage jumped out at me: I think the reason why some kids with autism try to get hold of an object by ‘borrowing’ someone else’s hand is that they can’t tell how far they need to extend their own arms to reach the object. They’re not too sure how to actually grab the object either, because we have problems perceiving and gauging distances. This was particularly relevant this morning because an hour earlier this article about Watson Dollar finding a way to communicate in his twenties had popped up on my Facebook newsfeed. It includes the following passage: Watson initially found it easier to grab his mom’s hand and guide her outstretched finger to type words rather than extend his own. He doesn’t do that much anymore but still prefers to clutch her hand while he types with his own finger. A heartwarming video of Watson can be seen here on the USA Today website together which clearly shows his method of clutching his mother’s hand.
In Archie’s case he finds typing difficult, he finds language difficult and he finds literacy difficult. A huge advantage of the Vantage Lite for us is that it’s easy for him to use and he can use it independently. I do automatically tend to demonstrate new words to him hand over hand (I still teach a lot of things hand over hand), but after one or two demonstrations he can access that word independently. This independent use means that he is believed, and with reference to my last post is able to demonstrate competence. As he becomes more able to communicate and as his expressive language develops I fully intend to introduce him to typing via the iPad as well. If he needs some physical support to get going I won’t hesitate to offer it. The photograph below shows some of Archie’s recent writing. Whilst he is not using writing to communicate he can now write his name without support, but it has taken many years of hand over hand practice for him to be able to produce this independently. It would perhaps be more surprising if support was not needed.
Joseph finished primary school this week. Come September he’ll be off to secondary school with 174 people in his year group – more than the total number of pupils in his current school. A time of change, and it has been a week of reflection. We have been lucky with the boys’ schools. Apart from a dodgy few terms when Archie was in mainstream (and to be fair that wasn’t entirely the school’s fault – Archie should never have been there) the boys’ have been in supportive schools who have done their best to help them reach their potential. In Archie’s case that potential seems to be expanding rapidly and I’m not quite sure where we’re going to end up.
Year 6 were given a warm send off. A close group of friends, there were tears when it came to say goodbye and a rather idyllic final barbecue overlooking the sea, with water fights, British bulldog and a swim in a sea pool. The children were given some lovely gifts including a jar of questions each from their class teacher. The note attached to the jar says that the questions are designed to get the children chatting and debating with their friends and family. They range from simple questions such as ‘what is your favourite place in the house?’ (Joseph: the computer room; Louis: the front room because I watch TV in there) to more abstract ones such as ‘if you could have any superpower in the world what would it be and why?’ I’ve put it on the kitchen table to encourage meal time conversation. It’s a thoughtful gift for any family. I thought Joseph might need to be a bit older to appreciate the value of such a gift but he was genuinely delighted and was keen to get started with the questions.
It’s a particularly useful present for our family because Archie often finds these sorts of questions difficult. Most of his conversation is concrete, usually about what he’s doing, or has done and when. I asked him earlier today what his favourite food was and he struggled to answer. Archie eat; Archie like food; eat food tomorrow were the initial answers before he said sweeties. Many of the questions in the jar are great for encouraging Archie to start to understand, think about and answer these more abstract questions, where he has to express a preference rather than provide an absolute right or wrong answer. He did well with ‘what is your favourite room in the house?’ and answered bathroom pretty quickly. He may not understand the concept of superpowers yet but he was included in the conversation and made his own contribution mummy car. A question about whether you would prefer to live on the moon or in the ocean led to a great debate between Joseph and Louis centring mainly on available food. I translated a little for Archie asking him which he preferred, the moon or the sea and he said sea which surprised me a little, maybe he recognises the effect the full moon has on him! Maybe he just wants to go surfing again, life has intervened and we haven’t been for a while.
While many of the questions may be a little out of reach for Archie at the moment, through being asked to contribute and through being part of the conversation I expect him to find them gradually easier to answer. Language cannot be learned passively, it is only through using language that you learn to wield it. These mealtime conversations provide an opportunity for Archie to take part in describing preferences and in debating without the attention being solely on him. He can hear other people being asked the same questions and listen to their answers. He can begin to understand that we are interested in his answers as well as his brothers’ and he can learn that questions aren’t always asked as part of an assessment and aren’t always designed to trip you up and reveal what you don’t know. It is a way in which we can show that we are assuming competence, something which Naoki writes about in The Reason I Jump. Incidentally, slightly off topic but this is a subject close to my heart and I co-authored a book chapter published this month on the issue of competence (Laughter and Competence: Children with Severe Autism Using Laughter to Joke and Tease in Studies of Laughter in Interaction).
Whilst I am aware that Archie doesn’t (yet) have the means to always express himself in a way that is easily understandable and that he sometimes needs help interpreting questions I can see the question jar becoming an important family tradition. I am already hatching a plan to get everyone to contribute new questions when we’ve worked our way through the originals. It is interesting for all of us to think about our answers and explain or defend them. To have Archie able to take part in this is wonderful. From expensive high tech talkers to simple jars of questions other people’s gifts are having a large impact on our lives.
A couple of further links for those interested in Naoki Higashida after my last post.
(1) An article in today’s Guardian by David Mitchell: Learning to live with my son’s autism. Although, as always in these articles there are some areas where my view differs a little it’s a powerful piece of writing, with of course many shared moments. This is something fairly typical, when meeting parents of children with special needs you find that although you might be virtual strangers your lives have so many shared moments you’re practically family.
(2) A link to video about Naoki Higashida by the Facilitated Communication Institute of Syracuse University, I write so I am alive. (You need to scroll down, although they’re all worth watching). Thank you Lisa from Aut2Communicate for the link. On watching the video at first I thought that Naoki was very much more organised than Archie, for example he was catching a ball and appeared calm and pretty much in control of his actions. Then Naoki started running and jumping, and hitting and biting himself and he looked very much more like Archie. Something I have noticed very recently is that as Archie progresses with the talker, and routinely produces longer sentences he is also becoming a little more organised. He can copy out words now, and he will sit at the table and concentrate on his homework (once we’ve managed to drag him away form his iPad). For a while now I’ve felt that one of Archie’s greatest problems has been his lack of oganisation and his slavery to involuntary movement and actions. It’s hard to complete a thought if it is always interrupted by the need to run and jump. It will be interesting to see how his emerging calmness and ability to concentrate develops. I am hopeful that it will continue to improve and lead us to exciting new places.
I don’t listen to Radio 4 that often. Archie likes music in the car, and Radio 4 therefore isn’t really tolerated. Luckily my parents only listen to Radio 4 (unless Folk Night is on) and they have been enthusiastically relaying this week’s Book of the Week.
The Reason I Jump: One Boy’s Voice from the Silence of Autism is written by Naoki Higashida – a severely autistic boy living in Japan who has learned to communicate using a letterboard (a link to the roman version, rather than the hiragana, but same idea). Translated into English by the author David Mitchell and his wife K.A. Yoshida it promises to offer a fascinating insight into autism along the same lines as that provided by Lucy’s Story: Autism and Other Adventures. Excerpts have been read on Radio 4 this week- and if you are reading this around the end of June may still be available on iPlayer.
I’m very fond of Japan – I lived there for a year, and even taught in a special school that catered for children with autism and learning disabilities – so I tend to read a lot of (translated) Japanese literature. This book is going to be a particular treat (and I’ll probably cry when I read it). It’s on order.
Just a quick link really for this post, from the Speak for Yourself blog. They make the point that typical children are given at least 2 years before they’re expected to combine words, whereas children given AAC devices are often expected to produce sentence quickly. They then go on to talk about it being better to have to combine words yourself rather than use pre-programmed phrases (I agree with their comments on the whole btw, even if the occasional pre-programmed phrase does no harm, on the whole I think it is better to learn to produce those phrases from single words).
I wanted to add to this my observation that Archie really did need some time just using his device at a single word level. He has explored the device himself, he is now very familiar with it & with that familiarity he has begun to produce more complicated phrases. I’ve been struck by how typical his language development with the device has been, when compared to the speech development of his two younger brothers. He went from single words to comfortably combining two words to longer phrases – now they can be very long indeed. He’s also made corrections, so whereas ‘not’ always used to appear at the end of a sentence it’s now, more often than not, found in the correct place. None of this has been achieved with intensive therapy, his development has taken a very natural course – the vantage lite just providing him with the voice to do that.