Qualitatively Different?

March 18, 2013


(Zeller’s congruence is an algorithm devised by Christian Zeller to calculate the day of the week for any calendar date. Ref http://calendars.wikia.com/wiki/Zeller’s_congruence)

In a TEDx talk, Stephen Volan , an adult with Aspergers talks about what comes naturally to him and what had to be acquired though conscious effort, for example, he said

As precocious as I was at reading words I turned out to be much less able to read people

What we can forget is that this is often the case for non-autistic people too, that what comes naturally to autistic people may have to be acquired through conscious effort by non-autistic people, and that the end result may too be qualitatively different.

What comes naturally for my non–autistic son, for example, such as reading people and responding socially, is being consciously acquired by my autistic son. Also what seems natural for my autistic son, such as reading before he could speak, playing any instrument and knowing the day of the week that any date is, can be consciously acquired by my non-autistic son (although the day/date formula may be a little difficult to master!)

I imagine interacting socially for Joshua could feel a bit like the equation above. So many gestures to account for, facial expressions, subtext, intonation, emotions being conveyed, and then trying to remember all of that in a group context-when none of these things are your first language.

Stephen Volan adds:

To me subtext (innuendo, intent etc) is a foreign language, I may be fluent now but unlike most of you I wasn’t a native born speaker of it

The important thing is, he got there in the end.

There is a difference in the end results of my boys’ efforts to communicate or to play the piano. Both are enthusiastic, but one feels slightly stilted and at times a little off-key. There is an ease to that which is intuitive that is absent from that which is acquired through conscious effort, but both sound brilliant to me.


Getting ready

February 22, 2013

Video 17 0 00 07-29 - Copy (1)

Josh (my 6 year old with Autism) and I were looking back on the past few years today. Interestingly using  Polish numbers Josh told me ‘When I was ‘Jeden’ (one) I had the chicken pox, when I was  ‘Dwa’ (two) I couldn’t talk, when I was  ‘Trzy’ (three) I could say just a few words, when I was ‘Cztery’ I was getting ready.’
‘Getting ready for what?’ I asked
‘I was getting ready to ask questions!’
So that’s what it was, I reflected. I remember Joshua’s fourth year differently. I remember 2-3 word sentences followed by what felt like ground hog days, weeks, extending to months of playing and climbing and requesting and joining. It was all great fun but it felt like we weren’t moving ahead, or making progress. Now I see what Joshua was doing. He was GETTING READY to ask questions! The foundational blocks of being able to control his movement, of having a developed sense of self through play, an understanding that he can control others and his environment, an increased desire to do so and pushing through his not-naturally- evolving speaking skills, needed to be in place until finally, he could ask his first question which was ‘ Is Daddy over there?’ (pointing to a restaurant). By the time of his fifth birthday he was asking lots of questions and starting to engage with his peers. He has been asking questions ever since. In Autism development is markedly different and sometimes what feels like groundhog moments, such as echolalia (repeating phrases like an ‘echo’) can be a consolidation phase, what Rita Jordan an author and acclaimed researcher into Autism refers to as necessary steps in an unusual developmental path, to be embraced and accepted as we wait for what happens next.  And so when I or you feel a groundhog day beginning again ,we can remind ourselves ‘He’s getting ready’, and anticipate what’s to come.

Proprietary Energy Sources

January 29, 2013

solar power

We are waiting for new solar panels, and I was explaining to my 6 year old Autistic son Joshua how sun power would provide all of our energy during  daylight. Joshua paused and then asked me:

 ‘So, what are you going to use at night, moon power?’

I was thinking of how as parents of children with Autism we can miss out on the usual sources of energy and motivation  as our society is set up to applaud a particular pathway, and specific achievements. For example when visiting a primary school last year I asked what was celebrated in the school and was told they had awards for achievements in  English, Maths and sports. I asked what about the rest of the children, how are they celebrated, and was advised these were the categories focused on as ‘We have our league tables.’

For parents of quirky and wonderfully different children we can miss society’s celebratory moments as they are set up around a different set of expectations. We may even exclude ourselves from such occasions due to the noise levels which make them just not worth the effort. And what we celebrate -a  first word (regardless of age), a ‘connected feeling’, a reaching out to be a friend, a unique idea, or just being in a classroom and feeling OK, others may not understand enough to genuinely join you in applauding.

I love Joshua’s notion of creating an alternative energy source that we invent ourselves. We can congratulate ourselves, have a special time with our kids that says ‘We are doing great‘, have a prize ceremony at home, or surround ourselves with like minded people that just ‘get’ us. We do not actually need outside affirmation to be pleased, we just need to know and have on tap our own proprietary energy sources.

A Different Route to Social Skills

January 12, 2013

Video 109 0 00 07-24People with Aspergers Syndrome are natural experts

Tony Attwood, The Complete Guide to Asperger’s Syndrome

One of Joshua’s play therapy team commented this week how lovely it is to see Joshua’s weaknesses turning into strengths. It was just what I had been thinking. Where my 8 year old seems naturally gifted in most sports (definitely inherited from his Dad’s side), Joshua overcomes his natural body co-ordination difficulties by practicing, practicing, practicing,  until he becomes (almost) just as skilled. Where Joshua’s unusual memory previously meant he could not recall what to do with a toy he had played with before, we see he now applies this difference to remember details that are useful and help him order his world, like what his diary is for the next few months (or year, to be more precise!), where Joshua’s difference in auditory perception previously meant he would not respond to his name, we see now he can accurately name any note played on an instrument, he has perfect pitch.

It occurs to me that if I had tried to shape Joshua into what I saw as acceptable I may have produced a bland, banal version of me, and that would not be very pretty! Instead by focusing through play on letting him find his way to express who he is, we are now seeing that his autistic qualities such as perseverance, difference in memory and unusual auditory style  are becoming his strengths and his protectors as they allow him to develop that key-protector in life: self-esteem. Self-esteem is not always as readily available through the friendship route as for other children and is a wonderful by-product of developing  his skills his-way. And because it gives him confidence and by consequence he looks pretty cool (!) , it’s a friendship starter as well.

Great expectations

December 31, 2012

I recently discovered my initial ‘resolutions’ for my son Joshua, created 4 years ago just months after he had been diagnosed with Autism and Sensory Processing Disorder. I had spent rather long months listening to negative prognoses in the light of which my resolutions seemed rather optimistic, and could even be labelled ‘false hope’.
The funny thing about false hope in the context of Autism is that it can prepare the pathway for the basis of real hope. Let me explain.

At that time of writing my goals, Joshua’s future was being decided on the basis of assessment tools (such as the Wechsler Scale for children) which were dependent on his ability to engage with a stranger and to communicate the intelligence he possessed. This assessment was then approved as a reliable tool on which to write his education plan for the next number of years, to be revisited only at key stages, that is every few years. However Joshua could attend for only a few seconds at a time, he had no language, spoken or non verbal, and could not point, so that his psychologist was not able to see the potential I saw and asked me ‘What signs of any intelligence can you see?’
On reflection Creativity Expert Ken Robinson’s comment seems appropriate

‘ We look but we do not see, because our traditional commonsense assessment of abilities distracts us from what is actually there ‘

(Robinson, 2001, Pg107)

In fact Intelligence Expert Howard Gardner calls:

the drawing of widespread educational implications from the composite score of a single test — like the Wechsler Intelligence Scale for Children...nefarious [wicked, villainous]

(Murphy,1999, Pg 102)

Why criminal?  It is criminal because it is an inaccurate measure of intelligence in Autism thereby creating a false impression, and we are advised to then use this information to ‘be realistic’ and adjust our expectations, which impacts on what we do, in many cases setting the child on an educational pathway with ceilings on the learning experiences and information provided. The IQ test creates a false reality.

By contrast the SonRise Program course I was attending was dismissed by many as ‘false hope’. Indeed the practice of asking a mother to write out her dreams for her autistic child, regardless of others predictions, to write them exactly as she would like them, to rate how likely she feels she is to see them realized, and then to rate them higher, just by deciding to do so, could seem unfair, cruel even, much better to be realistic. Given the choice I chose the former. And then a marvelous thing happened. I changed. By deciding to view my child through the eyes of hope, my expectations raised. With the limits imposed by others removed I no longer saw labels over my child’s head. I made decisions that prioritized making these dreams happen, I communicated more with Joshua, played more, expected more, waited a few more seconds for a response, persisted more, and ultimately have got every one on my list (well, we are still working on the last one- an improved sense of danger!)

I am off to write 2013 resolutions, this time they are things Joshua tells me he would love. I see a number of obstacles in our way and like many parents it is the fear of what may happen if I cannot help Joshua realize these wishes that could prevent me from going after them. Safer to be realistic? No, because false hope is more powerful than false realism, and both will create their own reality as they change what we expect and what we do. Great expectations indeed.

Why don’t you…

December 23, 2012

why dont you2
Does anybody remember this BBC show? http://www.youtube.com/watch?v=uRUhjFF5a6Y Even as a child I found it ironic that a TV program with a loyal following,each week suggested that we ‘switch off the television set and go and do something less boring instead’, which, given its continuing popularity apparently few actually did!
4 years into a SonRise program I remember the dreadful day at the SonRise Start-up course when they suggested I did just that- switch off the TV set. I had never heeded the BBC so why should I listen now, I responded, and decided it was simply extremist talk which was best ignored. Two years into my program I had tried to implement less TV at home but it always crept up as a very useful babysitter enhanced by the fact that it is something that I really enjoy myself.
SonRise teaching suggests that where your gaze is, your attention is, and so when my son’s eyes are on the TV I may think we are having a shared experience but in reality very little of his attention (as I discovered) is on me. With my son in particular, his challenge is that his brilliant visual processing allows him to rewind and replay a film again and again, a type of thinking which was illustrated in the excellent film about the life of autism Activist ‘Temple Grandin’ http://www.imdb.com/title/tt1278469/.
In fact for 3 months Joshua did just that, he scripted TV programs for most of the day. So we reluctantly followed our SonRise teacher’s advice for him and turned the TV off, and ‘went and did something less boring instead’ (replacing TV with craft magazines and play). Remarkably Joshua progressed more in the next 2 months than he had in the previous year.
We still watch some TV, but much less than before.
I like to have my ideas challenged every now and then, even ones I hold dear and am thankful to SonRise (I think!) for the initial suggestion. And so I share it with you, just in case…

Instructions not included

December 20, 2012


Today was a day for two user manuals, one for the plane that my son Joshua made, and the other that Hilde de Clercq, author of ‘Autism from within – A handbook’, recommended as a guide to my son.
I remember thinking when my second son was about 6 months old that I was definitely missing the right book. My shelves were lined with at times opposing theories on child rearing such as ‘The Contented Little Baby’ book or ‘Little Angels’ that had helped me muddle through with my neurotypical son, but nowhere in the indexes were there sections entitled ‘wall of silence’ or ‘floppy in your arms’ or even ‘when granny touches baby, baby hits back’. Even the recommendations of friends and playgroup mums, which were of great help in raising my first child, no longer seemed to apply. I had a nagging feeling that I had been using entirely the wrong user manual from the start.

I found the suggestion of the existence of an alternative guide much later in Peter Hobson’s ‘The Cradle of Thought’:

But suppose for a moment there were babies who were built differently … who were not so socially attuned nor so hungry for social engagement. What would such babies be like? And in what way would their development differ from that of anyone else?

At the Awares online conference today Hilde de Clercq wrote:

It is a question of understanding the ‘manual’, the ‘user’s guide’ of each person with autism.

Jim Sinclair, an autistic adult and Autism rights activist writes

Being autistic does not mean being inhuman. But it does mean being an alien. It means that what is normal for me is not normal for other people. In some ways, I am terribly ill-equipped to survive in this world, like an extra-terrestrial stranded without an orientation manual. Grant me the dignity of meeting me on my own terms -recognise that we are equally alien to each other, that my ways of being are not merely damaged versions of yours. Question your assumptions. Define your terms. Work with me to build bridges between us

I love the idea of a scrapbook user manual, pieced together by observations of how Joshua appears to respond to the world and added to and changed as we discuss what is normal for him. Josh should make one for me too. It may start with ‘To get what you want from Mum, first make her a nice cup of tea…’
1. (Hobson, 2001, Pg43).
2. and 3. (www.awares.org/conferences)

As easy as riding a bike

December 13, 2012

As easy as riding a bike

I am very proud of this moment. The day my son rode his first 2-wheeled bicycle, and look at the concentration on his face! Like many mothers of children with a diagnosis of Autism, I noticed very early on a difference in my child’s motor skills. Joshua did not point, hold a crayon, or step over an object in his way, and he had very weak muscle tone.
Stewart Mostofksy’s research* identified that although children with autism tend to reach early gross motor developmental milestones on time (sitting up, standing etc), ‘they run into difficulties…when they have to develop these more complex sequence patterns of movement- climbing onto a swing, pedaling a tricycle’. Mostofsky* goes further to suggest that this points to a lack of an ‘action model’ that we use to respond to our changing environment in an adaptive way, and which can predict both motor and social difficulties. As a mother of a child who had significant motor difficulties, this did not make optimistic reading, however, as is often the case with Autism, what can seem a dead-end is also an opportunity, and a negative can be re–read as ‘requiring additional practice’.
And so the practice began! By offering Joshua opportunities to have control over his body he seemed to gain increasing control over his thoughts. In fact Joshua’s first visible idea in play came just one week after he had been able to climb onto a swing in a new way, showing his first idea in motor skills.
As I watched Joshua’s struggle to overcome his physical difficulties, the extra practice that required, and his pleasure at finally achieving success, I learnt to appreciate his internal struggle to organize his thoughts and sensations, the extra practice that that required and his well-deserved pride in finally achieving bit-by-bit what for others may be just as easy as riding a bike.
* ref.http://www.ncbi.nlm.nih.gov/pubmed/21467306

One small piece of information, one big life change

December 10, 2012

first do no harm
I watched the excellent film ‘First do no harm’, starring Meryl Streep, last week. It shows how a mother intuitively kept searching for a solution to her son’s epilepsy, despite being told that all was available was drugs and surgery. I referred my son at 1 year old to the doctor asking if Joshua shaking in the morning before food and running after food was significant. When he was diagnosed with Autism and Sensory Processing Disorder I asked was there any connection to his unusual relationship to food. Like the mother in the film I was told categorically’ no’, and was told in April that any such notion was ‘mumbo jumbo’ and should not be used to make decisions for my son. Like the boy in the film Joshua developed shaking fits, in his case 3 times a week for 6 months, and it took a flight to a London based Immunologist in May to get that piece of information we needed. Joshua has not had a shaking episode since. And his focus and language are much improved.
Autism is one of those areas in which no one can claim to be an expert, as there is so much unknown at present, and so when something is presented about a child as status quo, we may just be in want of one vital piece of information…

The ‘I made a friend at Social Skills’ Naughty Chair

December 8, 2012

My son Joshua, (a 6 year old with a diagnosis of Autism) made 2 friends today, at a ‘Social Skills’ class. Hurrah, you may think? Apparently not. Instead of being celebrated the boys were all put on ‘Thinking chairs’ for ‘playing each other up’ by ‘running around and being silly.’ Am I very mistaken or is this not how 6 year old boys tend to make friends?
To quote the Social Skills homework page, ‘It is okay to use words when I feel angry, I can say ‘I’m angry!’ or ‘That makes me mad!” Well, I don’t quite feel angry, but I do chuckle to myself when I think of the irony of 3 cute little 6 year old boys in a line, all giggling sitting on ‘Thinking chairs’ to ‘Think about what they had done’, namely make friends in a perfectly playground- acceptable, age-appropriate way that unfortunately failed to fit in with the neatly structured curriculum of the Social Skills class.
Valuable as scripts and cues can be in learning useful ways to interact when interacting is difficult,as it can be for my son, today shall remain fixed in my mind as a lesson of why the child should be the teacher, the adult the facilitator, and how sometimes, we just need to let go of what we hold dear, and get out of the way, to let something rather more brilliant take shape.