Friday 22 November 2013

The social brain and its superpowers

Hello there......finally.  It's been a while :( 

All my energy and time has been going into a) my kids and b) developing our little school, which feels like it's coming on in leaps and bounds, I'm proud to say.  More on that in another blogpost.
This morning whilst getting ready for work, in true multi-taking style, I was also listening to the TEDx talk below.  I liked it so much I'm sharing it here.  It's by Matthew Lieberman and is called 'The social brain and its superpowers.'

The talk focuses on what social connectivity enables us to do.  Lieberman suggests that the ability to think about or predict what others are thinking about and imagine their responses gives us an unparalleled capacity for co-operation and collaboration.  Lieberman calls it 'a social superpower'.
He says that because we are hard-wired for social connection, we see actions in terms of the minds behind them.  It is proposed that becoming more social or honing this power is the secret to making us smarter, happier and more productive.
He also says that more often than not, we forget or overlook the importance of social competence.  I have written about the impact of this on education here.  Lieberman gives an example of what he means in a classroom - if a child learns in order to teach someone else then s/he will learn better than s/he would if learning in order to take a test.  He states that research in his and another lab has shown that if we are socially motivated to learn then we learn better than we would when using the analytical capacity of the brain.  Now that is definitely food for thought in my book.
Lieberman looks at what makes a great leader and suggests that great leaders generally have increased social competence, which allows them to leverage the analytical skills and creative abilities of those around them.  They are able to make teams more productive.  He also observes that if we are working in a well connected team, each of us will work to complement both the strengths and weaknesses of others so that we function optimally as an integrated whole.

He concludes by looking at how social connection is one of the best predictors of happiness and emotional wellbeing. 

Saturday 21 September 2013

Further discusison on social and emotional development and autism

For those of you who haven’t been following the discussion about the theories that underpin RDI, the discussion takes part in the previous two blogposts and the comments on those blogposts.
First – an apology.  Sorry it has taken me an absolute age to respond – time is extremely tight for me in term time.
Emotional regulation – I agree that emotions can fluctuate and clearly there are functional reasons for that…we need to be able to express happiness, anger etc but I do think we need to come back to an equilibrium and would suggest that its unhealthy (both for mind and body) to remain in a state of heightened emotion if that emotion is a negative one.  For example, frustration increases stress hormones.  Stress hormones depress the immune system and we become more vulnerable to toxins and infections.  The way I read it, this is what Bowlby means….that whatever our natural fluctuations in emotions, we need to come back to a level equilibrium.
Re derailment from the typical developmental pathway - I never said that difficulties managing uncertainty and change (lack of dynamic intelligence) is the only cause of anxiety.
I agree that heightened functioning of the amygdala would result in anxiety but I would question why the amygdala is functioning in a heightened fashion.  It might be because a person is being chased by a bear….in which case, the amygdala is doing its job and triggering the fight or flight response.  It might be due to sensory overload or sensory processing difficulty.  But the amygdala may also be operating in a heightened fashion because the person (due to derailment of the typical developmental process, which has resulted in lack of DI) is unable to recruit the pre-frontal cortex to over-ride the amygdala when confronted with uncertainty.  Most of the anxiety I see as an educator in children with autism is due to difficulties managing uncertainty and change.  There is some anxiety resulting from sensory problems but much more, in my experience, results from difficulties managing uncertainty.  That said, I don’t currently work with children who have huge sensory problems, so if I was in a different environment, I might have a different experience.
Regarding episodic memory – if my topographical agnosia was so overwhelming that it stopped me from travelling then I would want to be able to work on it so that it no longer disabled me.  I would hope that I could access therapy that would allow me to get to a point where I had enough positive episodic memories of success in my resilience repository to be able to tap into them in order to manage my condition. 
I agree that some children with autism experience overwhelming sensory experiences which prevent them from accessing everyday activities.  In RDI we would advocate that a sensory obstacle was worked on via sensory integration before beginning to address weaknesses in dynamic intelligence.
Re humans being hard wired to be social and your suggestion that no evidence has been presented for this.  I am happy with the evidence that I have cited.  Plus it fits into a theory of evolutionary psychology, which makes sense to me.  Looked at through the lens of evolutionary psychology, advances in humans and other animals serves a purpose.  The purpose of being hard wired to be social is the potential for developing dynamic intelligence that this confers. Dynamic intelligence doesn’t develop any other way.  We can’t teach it, it is something that unfolds naturally during the interpersonal engagement that is Peter Hobson’s ‘Cradle of Thought’.  That is why humans are the dominant species on the plant.  I guess we will just have to agree to differ on that one.
I never suggested that the social model of child development explains delays in other milestones that are often found in autism.  My blog contains posts (link) from guest bloggers that look at theories behind delays in fine motor skills and sensory impairment. 
The theory I am proposing (which underpins the RDI model) is a theory that explains the weaknesses in DI in children with autism – nothing more.
Sue it has been an interesting journey!  I wish I had more time to continue with these discussions but I’m afraid this will be the last time I can participate in this dialogue due to family and work commitments.  If you are interested in discussing these and other similar issues further, I would recommend you have a look at the facebook group AutismGuide.  There you will find over 500 parents and RDI Consultants - some of whom are also parents as well as qualified in professional fields such as sensory integration, child development, speech and language therapy.

Wednesday 28 August 2013

Why is mastery of key developmental milestones absent or delayed in autism?

If you've been following the blog recently, you'll know that Sue and I have been having some lively discussions in the comments of the previous blogpost that related to autism and loneliness.  One of the questions Sue asked me was why I thought mastery of key developmental milestones is absent or delayed in autism.
I undertook to answer this by quoting from an article I wrote that was published in the UK journal 'Good Autism Practice'.  The citation for the full article in case anyone wants to read it is: 'Why a developmental approach is crucial in supporting children and adults with autism: using the principles and practice of Relationship Development Intervention within an alternative school setting' Good Autism Practice Volume 14, issue 1, May 2013.
Here is the excerpt:
'In autism, something interferes with brain development early in life which derails the typical developmental process.  In typical development, parents establish patterns which the baby comes to rely on: e.g. right after birth: the pattern of feed, rock, sleep, change; after a few weeks: the pattern of feed, rock, sleep, change, play.  The baby comes to know that when s/he cries, the parent will come and take whatever action is appropriate to sooth him and/or provide him with stimulation.  In this way, the baby learns to trust the pattern and the associated adult.  Parents adjust their response in relation to the feedback they get from the baby.  If the baby is still unhappy when she has been fed, the parent tries winding her to see if this will settle her.  If this doesn’t work, the parent tries rocking her, playing with her etc. until she settles. 
These patterns also set the stage for emotional self-regulation: the baby learns that if s/he is upset, the adult will provide comfort.  Emotional regulation is a process that starts out as a shared activity between two or more people (co-regulation) and becomes internalised as the child develops.
Even before talking develops, the toddler has become a master at reading and responding to non-verbal communication such as facial expression, gesture and prosody.  Through hours of play and experimentation with the parent, the toddler has already learned to reference the adult’s emotional expression for information, including information about what to do when s/he is faced with uncertainty.
This can be seen clearly in the ‘visual cliff’ experiment where the baby is unsure whether or not to cross what looks like a steep drop to obtain a colourful toy.
To help decide what to do, the baby references her mother (looks to her for information). When greeted with an anxious face, the baby withdraws, but when greeted with a positive, cheerful face, the baby proceeds to cross the visual cliff.
Children with autism fail to develop this experience-sharing type of referencing because they have veered away from the typical path of development where interpersonal engagement acts as the ‘cradle’ for the development of higher-level ‘dynamic intelligence’ thinking skills.  This explains why children with autism avoid change and uncertainty and why change and uncertainty lead to such high levels of anxiety in autism. 
In early development, the adult is the ‘guide’ to the child’s ‘apprentice’ in a process called ‘guided participation’ (Rogoff, 1990).  Guided participation enables the child to collaborate in a learning relationship with close adults which is:
‘…..carried out day after day, without much deliberation or conscious awareness. Children participate alongside family and community members in authentic activities as apprentices, actively seeking to appropriate meaning and expertise from adult guides who provide opportunities for the apprentice to safely encounter cognitive challenges.’
In babyhood and more so as the baby matures into a toddler, parents pitch small challenges just at their child’s current edge of competence: Vygotsky’s ‘zone of proximal development’.  The toddler’s feedback enables the parent to decide whether the challenge has been pitched at the right level.  If it is too great, the parent will scaffold the activity to make it easier.  The toddler then successfully completes the activity and, in experiencing success (which is usually spotlighted by the parent with a comment such as ‘wow – you did it!’ and a big smile), lays down an episodic memory of competence. 
In typical development, success that is spotlighted by the guide leads to an episodic memory (a personal, autobiographical memory) being encoded.  These special memories of competence build up in a memory bank to be used again when we are faced with another uncertainty.  For instance, I have a condition called ‘topographical agnosia’ which basically means I can’t navigate my way out of a paper bag.  I quite often have to drive to places I don’t know, which causes me anxiety.  However, I am not daunted by this because I can draw on my memories of previous success in similar uncertain situations.  I can remember successfully using my satnav, stopping to ask people directions, phoning my husband to ask him to look at the map and tell me where to go next.  These memories have built my resilience, which enables me to cope and to manage my anxiety, so also helping me to regulate myself.
The crucial points here are that typically developing children safely encounter cognitive challenges during their interaction with the adult guide and that they lay down episodic memories of competence thanks to the interpersonal engagement that takes place within the guided participation relationship.  The experience (and memory) of success in overcoming a challenge is partly what motivates them to continue being curious.  The child is successful because the challenge is taking place within the interpersonal relatedness that is the cornerstone of the guided participation relationship – so if the child apprentice starts to falter, the adult guide intuitively picks up the signals and scaffolds the activity to make it easier for the child to master the challenge successfully.
Children with autism do not have the safety net of their communication partner’s perspective to use as a point of reference when faced with uncertainty.  Autism has interfered with the child’s development, so the child neither references for information nor gives feedback to the parent.  The parent is then unable to take their role as the guide and consequently the child lays down few episodic memories of competence in their ‘resilience repository’.   For children with autism, their experiences are more often those of failure, causing frustration, distress, withdrawal and sometimes ‘meltdown’'.
To summarise: humans are hard-wired to be social.  The evolutionary advantage of being social is that interpersonal relatedness within the guided participation relationship is the vehicle that enables the development of higher level thinking skills. Autism interferes with typical brain development (with the hard-wiring to be social).  The feedback loop between parent/caregiver and child breaks down, the guided participation relationship is not in place and so the interpersonal relatedness that leads to the development of higher level thinking skills via mastery of key developmental milestones (referencing, joint attention, co-regulation, self-regulation....and many more) cannot take place.

Tuesday 20 August 2013

Autism and loneliness

I really should be tidying the kitchen, but somehow I've ended up writing this blogpost...displacement activity?  Maybe partly, but also I got a tweet from an autism organisation whilst I was shopping earlier (campaigning on the go!!) and ever since I've been thinking about why it is they just don't seem to get it when it comes to quality of life in autism. 
I think most people would say that the main thing that gives them pleasure in life is related to relationships with other people - children, partners, friends. 
Those of us who don't have autism....let's imagine for a moment what our lives would be like if we didn't have those relationships, or if we had a condition that made it really hard to make and maintain friendships and relationships.  I know my quality of life would be very very different.  I can think back to a time when I wasn't in a was very lonely.  I was unhappy, demotivated, and had no zest for life. 
Thinking about life without my kids and without everything I get from being part of a family.....urgh, let's just not go there.
I'm wondering why the abovementioned organisation (and many if not most large autism-related organisations) focus on compensating for the difficulties that make it so hard for people with autism to develop or improve the abilities they need for successful friendships and relationships instead of helping people with autism to develop or improve these abilities....?
There are some people with autism who are successful in relationships - both friendships and romantic relationships.  But what the research into outcomes for adults with autism shows us is that these folk are in a minority.
I recently discovered John Cacioppo.  He is one of the founders of the field of social neuroscience.  So where a neuroscientist focuses on single organisms, this fella looks at how 'social species create emergent organizations beyond the individual' noting that 'these emergent structures evolved hand in hand with neural and hormonal mechanisms to support them because the consequent social behaviours helped animals survive, reproduce, and care for offspring sufficiently long that they too reproduced.'  (I quoted that from Wikipedia....and now my brain needs a rest).  I think this means that as humans created social structures (because we are wired to be social), our brains evolved in parallel (we developed a social neural network) and this social interaction paid off because it improved our ability to survive and flourish as a species.
Prof Cacioppo has written a book called Loneliness: Human Nature and the Need for Social for my bedtime reading list methinks.  He's featured at the end of the clip below.  The clip shows two brothers - one with Asperger's syndrome and one typically developing.  Jason, the young man with Asperger's shares how he is unable to read other's emotions and how this causes confusion and frustration for him in social situations.  Jason's brother Brandon describes Jason as 'one of the loneliest people I've ever met' because he is unable to connect with others.

Without friendships, people suffer in ways that science is only just beginning to understand.  Chronic loneliness is associated with a variety of mental and physical conditions: heart disease; diabetes; dementias; accidents; suicide.  We are at risk as much from loneliness as we are from smoking.
The pain of isolation experienced by some people with Asperger's syndrome is plain to see in the comments on this blog.
So......if we know all that, and we know that most people with autism struggle with friendships and relationships because of the impact of their condition, then why isn't there more of a focus on helping people with autism to understand and manage emotions, to develop social reciprocity, to master the milestones that help all of us to successfully navigate (and enjoy) the social world?
Anyone with any ideas about how we can work together to influence the movers and shakers in the autism world to be more proactive around this issue, please let me know in the comments :)
PS One of the first steps in understanding and managing emotions and developing social reciprocity is to master joint attention, a milestone most people with autism fail to master or only partially master.  I have started a petition to raise awareness of the need for interventions that focus on mastering joint attention.  If you live in the UK, please sign and ask your family and friends to sign.

Sunday 9 June 2013

Dr Catherine Lord's longitudinal study of autism

Last Friday I attended a presentation at Manchester University by Dr Catherine Lord, director of the Centre for Autism and the Developing Brain.  The presentation, entitled “Longitudinal Studies of Autism Spectrum Disorder” concerned Lord’s study of children from North Carolina and Chicago followed from age 2 who are now in their 20s. The project’s aim is to determine predictors of adolescent outcome as measured by adaptive skills, quality of life, positive affect, behaviour problems, and symptoms of anxiety and depression, with an emphasis on coping strategies and their impacts on well-being and independence. 
The children were examined for behavioural, cognitive, language and social development from ages 2 to 19 in two samples: a group of children originally referred for possible ASD and a group of controls. Their families have participated in phone interviews and completed packets of questionnaires when the children were between 11 and 18, with a focus on adaptive skills, behavioural problems and pubertal development. 
Children were categorised into 4 ‘social trajectory classes’: in two groups of 40% there was no change; in a group of 10% there was improvement and in another group of 10% symptoms worsened.
Predictors of outcome
·         Joint attention
·         Non-verbal cognitive level
·         Comprehension of language out of context
·         Imitation
·         Aggression
Other aspects that may predict response to treatment
·         Engagement with objects
·         Use of symbolic gesture
·         Amount and variation of vocalisation
·         Level of focus
·         Response to the first few months of treatment
·         Other individual strengths
Researchers also observed that:
Wherever parents were actively involved in treatment, there was more change.
Socially directed behaviours increased when there were developmentally appropriate tasks and language expectations and when other people took social initiatives.
Disruptive behaviours increased when tasks were too difficult or when they were unintentionally rewarded.
She stated that research tells us that a variety of intervention strategies will work well with some children with autism and that she has concluded that what is important in interventions is:
·         The focus on joint attention
·         The degree to which external rewards are used
·         Involvement of parents/caregivers
The message was that unless an intervention targets joint attention in some way, there will not be measurable or significant social communication outcomes.
Dr Lord commented that the 8 children in her study who are doing really well (some no longer meet the diagnostic criteria for autism) all have parents who got them into some kind of treatment at age 2 years.
My reflections
The clear messages from this for me in terms of what is likely to predict intervention success were the importance of a) joint attention as a key target and b) parents having a lead role in the implementation of any intervention.
As an RDI parent, there are no surprises there, but it’s good to see that research is slowly (excruciatingly painfully slowly) catching up to some of the practice that has been happening for the last 15 – 20 years (!!!)
I did manage to ask a question which resulted in a disappointing response and made me feel similar to the way I felt when I asked a similar question of a different expert autism researcher a couple of years ago.
I asked – given what has been said about interventions being more successful when parents are involved, is there anything crucial about what’s going on in the parent-child dyad that is contributing to the success and which may need to be incorporated into all interventions?  I spotlighted the work done by Barbara Rogoff on guided participation and the work done by Peter Hobson on interpersonal engagement.
Her response was to say that yes parent involvement was key and that the work done by Rogoff was purely theoretical. 
This caused me to reflect, mentally, to myself, ‘Jeeeez….it’s not even on your radar, is it??’  ‘It’ being the interpersonal engagement that takes place during the guided participation relationship being key to the trajectory of autism.  (If you’re new to this blog, there is more about interpersonal engagement and guided participation and why they are crucial in autism here, here and here).
I could have come back on her response but I took the decision that it was not the right time or place and that instead, I would write to Dr Lord showing that the work done by Rogoff and Hobson has in fact been translated from theory into practice and has been in use by families for the last 15 years.
I am, frankly, incredulous that a top autism expert appears not to know that and it makes me want to stand on a mountain in the middle of a sea of autism researchers and scream ‘will you please just listen to parents…..we are experts by experience!!’
A letter to Dr Lord will be another of my 52 things……of which there are several more to report, but for now, time to get the kids out in the transient UK sunshine J

Saturday 1 June 2013

Article on using a developmental intervention in a school setting

I've been published in the May 2013 edition of the UK autism journal 'Good Autism Practice'.  My article is entitled 'Why a developmental approach is crucial in supporting children and adults with autism: using the principles and practice of Relationship Development Intervention in an alternative school setting'.

If you'd like to subscribe to the journal, click here.  Subscribers can access a hard copy and/or an online copy of the journal, which comes out twice a year.

My article looks at:

 - Outcomes for adults with autism (mostly poor, from the limited research we have)

 - Dynamic intelligence (as an explanation for the poor outcomes)

 - Interpersonal relatedness and the development of dynamic intelligence (and why we need to be focusing on developing dynamic intelligence in schools)

 - Autism through a developmental lens: remediation (working directly on some of the difficulties at the heart of autism) vs. compensation (working round the difficulties)

 - A new approach to autism education (incorporating the development of dynamic intelligence into the curriculum)
  • A focus on Bright Futures School
  • Training staff to be 'guides' to pupils
  • Working with parents and evaluating our practice
 - Conclusion (basically that the development of dynamic intelligence should be prioritised in schools, especially for those with any developmental delay)

If you're in the UK and you don't want to or can't afford to subscribe but you'd like to read the article, you should be able to obtain a copy through your local library's inter-library loan service, for a small fee.  Ask for the article by title (above), and author (Zoe Thompson) and tell them its on page 9 of Volume 14, Issue 1, May 2013.

I would love to get feedback if anyone does manage to read it.

Thursday 14 March 2013

Competence – a fundamental foundation block for child development

This afternoon at Bright Futures School H and I went to Tesco for some ingredients for flapjack.  In the store, I used declarative language, non-verbal communication and pausing to enable H to reference me.  Some of the store staff are getting used to me wandering round the place with one or other of our pupils giving non-verbal clues for treasure hunts!  H found the ingredients.
When he was helping me to check out at the till, he made a mistake and scanned one item in twice.  He immediately said, ‘Why am I so dumb?’  This particular pupil is extremely sensitive to any perceived failure.  It can set him off into a negative spiral where he can end up hitting himself around the head.  The tendency towards low resilience is one of the things I personally find very upsetting in autism.  It is very unpleasant to see any child being so down on themselves for the kind of error that we all make, day in, day out.
I responded that I didn’t think he was dumb, he had made a mistake and we all make mistakes.
In the car park, I pretended to have lost my car and spotlighted my own mistake.  H immediately had the idea of using the keys to find the car.  He pressed the keys and I saw the lights flash, so found the car.  I spotlighted how H had helped me when I’d made a mistake – what a good idea it was to use the keys to find the car.  On the journey back I spotlighted how good it was to have a helper with me and how much I enjoyed going shopping with H.  I wondered aloud (declarative language) how I would have managed if I hadn’t had my helper with me.  H joked that I would have been walking back to school and we both had a good laugh about it.
Back at school we made the flapjack together.  At one point, H said ‘I love school.  I wish I could stay at school all day.’  I thought it was probable that this positive experience-sharing was prompted by the feelings of competence he had gained when I had been spotlighting how helpful he was and how much difficulty I would have been in without him.
I said I thought it was great that he felt like that and that I had enjoyed my day at school too.

Sunday 3 March 2013

Using the 7 'C's' of resilience to facilitate success

I was recently reminded of Kenneth Ginsburg’s book ‘Building Resilience in Children and Teens’. In it, he outlines the 7 C’s of resilience.  To me, these are the building blocks that need to be in place before any pupil can start to engage meaningfully with learning, be that formal or informal.
At Bright Futures School, I have seen with my own eyes the difference these building blocks make – they are the difference between being able to engage in a learning environment and being consistently excluded from school.  They are the difference between sliding into mental health problems and good emotional wellbeing.
Recently there have been a lot of changes at our school: new staff, new pupils, new timetable, reconfiguring of space.  One of our pupils also had difficulty with another pupil, which we had to manage very carefully.  As a result of this combination of factors, this pupil’s resilience and motivation to engage started to decrease. 
I was reflecting earlier today that it looks like this pupil’s resilience is on the up again, but it wasn’t until I read again about the 7 C’s of resilience that I was able to pinpoint why.
The 7 C’s of Resilience

1) COMPETENCE: Young people need to be recognized when they’re doing something right and to be given opportunities to develop specific skills.
2) CONFIDENCE: Confidence comes from building real skills that parents and educators can teach and nurture. Confidence can be easily undermined, but also bolstered by tasks that push learners without making the goal feel unachievable.
3) CONNECTION: Being part of a community helps kids know they aren’t alone if they struggle and that they can develop creative solutions to problems.
4) CHARACTER. Kids need an understanding of right and what wrong and the capacity to follow a moral compass. That will allow them see that they cannot be put down.
5) CONTRIBUTION: The experience of offering their own service makes it easier for young people to ask for help when they need it. Once kids understand how good it can feel to give to others, it becomes easier to ask for that same support when it’s needed. And being willing to ask for help is a big part of being resilient.
6) COPING: Kids need to learn mechanisms to manage their stress by learning methods to both engage and disengage at times. Some strategies for doing this include breaking down seemingly insurmountable problems into smaller, achievable pieces, avoiding things that trigger extreme anxiety, and just letting some things go. After all, resilience is about conserving energy to fit the long game and kids need to know realistically what they can affect and what should be let go.
7) CONTROL: In order to truly be resilient a child need to believe that she has control over her world. Feeling secure helps engender control, which is why kids test limits.
What we had been able to do with our pupil was:
 - Change his learning opportunities to include offsite activities in the community where he has a specific role that enables him to have experiences of competence.  The specific role he has is one that is meaningful and authentic and clearly makes him feel useful, because he is helping others.
I reflected that with this, we are hitting the C’s of ‘competence’, ‘connection’ and ‘contribution’.
 - Work with his parents to ensure that he has opportunities to participate in appropriate peer interactions.  Parents have achieved this by carefully using his younger NT brother’s social network.
I reflected that with this, we are again hitting the C of ‘connection’.
 - Revisit our strategies for helping this pupil to regulate his emotions.
This includes enabling him to take regulation breaks, validating his feelings when he is dysregulated and encouraging him to use 'stop and think'.  I reflected that here, we are hitting the C of ‘coping’.
 - Scale back the expectation of this pupil being able to engage in more traditional academic work of any kind, for the moment.
The activities that he is involved in are realistic and achievable with small challenges that can be easily scaffolded if he starts to encounter any difficulty.
I reflected that here, we are developing the C of ‘confidence’.  I think confidence is always a by-product of competence and out of all the C’s, I would argue that competence is the cornerstone (which, spookily, begins with C)
It is reassuring to know that even though we weren’t following the strict framework of the 7 C’s, we were (due, I think to the influence of RDI on our curriculum and school culture) addressing most of these areas in an attempt to change things to support our pupil.
I wanted to share this in case it gives other parents and/or educators a framework for evaluating what might help their kids/pupils if they start to appear demotivated and/or disengaged.

Wednesday 6 February 2013

How parent & carer forums can make use of the law

Just a quick post - I came across this video today (thanks to Karen for signposting me).  Its from Steve Broach, Barrister with Doughty Street Chambers and all round super hero.  Steve is talking about how parent and carer forums can make use of the law to support their members.

He discusses the responsibilities parent/carer forums have under the Data Protection Act, then focuses on:

  • The Freedom of Information Act (a favourite of mine) and how to use it to obtain information from statutory bodies that may not otherwise be forthcoming about the way services will be configured or commissioned

  • The Education Act and the responsibilities this confers on local authorities to meet the educational needs of children with additional needs.  He also touches briefly on the proposed changes to SEN law.

  • The responsibilities of Primary Care Trusts to meet complex health needs via a continuing health care assessment

  • Section 17 of the Children Act which confers on local autorities the duty to assess 'children in need'.  All disabled children are defined as 'children in need' and as all children with autism are (in the eyes of the law) disabled, all children with autism are entitled to an assessment of need.
Steve makes the point that if parent/carer forums know the legal responsibilities of statutory services (health, education and social care) then they will be well placed to advise or guide their constituent members.  Here is what he has to say:

Please share with your local parent/carer forum.

Sunday 6 January 2013

Thing 2: What to do when negativity challenges our parenting capacity

A few weeks ago I came across a post on one of the autism yahoo groups that really moved me.  I got in touch with the author, Kyra, and asked if she would be willing to reproduce it for my blog.  I’m very grateful that she agreed.  Kyra's main autism intervention has been RDI, which she now augments with strategies from the Nurtured Heart Approach and from Collaborative Problem Solving.  In the words of the inestimable late Bernard Rimland........'do what works!'  This combination certainly seems to be working for Kyra and her family.

In the text, Kyra is in black and commentary from me is in blue.
First, here’s a little information about Kyra and her family. 
Kyra Anderson is a homeschooling mom to an only child, an almost 12-year old boy who she used to refer to by the nickname Fluffy until it began to sound just too darn silly. She now uses one of his real nicknames, Tito. She started homeschooling when Tito had to leave preschool for aggressive behavior which prompted the testing which led to the diagnosis of Asperger's when he was not yet four years-old. She did RDI for many years, and is a proponent of social developmental approaches rather than behavioral approaches. Her main 'intervention' if you can call it that, for the last more than four years has been using and modifying the social curriculum of Nurtured Heart with the amazing work of Rebecca Klaw (her training DVD is amazing) and more recently, the tools she's learning from the Collaborative Problem Solving. Over the years, Tito did OT, specifically astronaut training, the listening program, and other specific sensory integration therapy, and HANDLE. These days, she tries to get him to do regular exercise, both indoors, and (shudder) in the great outdoors. 
Here’s Kyra and Tito’s recent triumph……..enjoy!
There’s never a time when we are doing only one thing to support Tito. It’s an assortment of things that mix, in various ways, with his resilience and flexibility that comes, in part, from cyclical fluctuations which are affected by states of wellness, amount of sleep, types of food, time of year, cycles of the moon, not to mention my moods, Dave’s moods, the weather, and who knows what else.
It’s hard to know what specifically is helping these last few months, but I think I can point to two things: 1. Neurofeedback and 2. Our parenting style, i.e., paying attention to how we deal with the difficult moments.  As to 1: Tito started neurofeedback at the end of October. And 2: Dave and I found the Nurtured Heart Approach, our main parenting tool, over four years ago. We’ve gone through periods of being terribly proud of ourselves for how well we’ve stuck to our main goal to NOT energize the negative, and periods where we, miserably, fell far short. Overall, I’d give us a B.
What’s helping lately is the mindset: Kids Do Well When They Can as opposed to Kids Do Well When They Try. The former is at the heart of the Collaborative Problem Solving method (CPS) outlined in the book, Treating Explosive Kids: The Collaborative Problem Solving Approach which expands on the philosophy and work from Ross Greene’s, The Explosive Child. That phrase has become my mantra.
One morning a few weeks ago, after playing with his Dad, eating breakfast, brushing teeth and getting dressed for the day as he does every morning, Tito suddenly became exhausted by the notion of doing anything at all except having his computer time. We were about to do the morning chore (Tuesday = fold and put away laundry), after which would come lessons, lunch, and finally, his (beloved!) computer time. You’d think I was siphoning his blood. He flopped on the floor, rolled around, picking up stray items and immediately dropped them as if his very arms were rags, saying he couldn't fold, he didn't have the energy, etc., etc.
I could feel myself getting tense, the nervous voice in my head whispering, Oh no, here we go… but I grabbed hold of my thinking and tried to model flexibility.
“Well, why don’t we do some exercise first, to build up our energy?” I said.
He thought it sounded okay, but as soon as I put on the Just Dance Wii that we both love, he was stumbling around like an elephant, bent over at the waist, bumping into me, saying no, no, he didn't feel like it! he couldn't! and was soon back on the floor in the pile of clothes where he writhed and said a few more things that made it clear, while he didn't have the energy for folding or for lessons, he might find some energy if he could just have computer time first.
Now, here was a perfect example of what someone might say was a kid who simply didn’t want to do the stuff he didn’t want to do, a matter of a kid who could do better if he only tried. I could have gone there. In fact, there was an odd sort of lure to go there. Instead, the mantra popped into my head.  I allowed myself to believe that he would rather be feeling capable and cooperative. I knew I wasn’t going to just let him have computer time right at that moment. I knew I wasn’t going to skip chores or lessons for the day. But I didn’t know how the whole thing would unfold, so to speak.
For me, for us, it’s all about energy. Not to sound woo-woo but that's just the way it is. Clearly, he needed some help from me, some support, in order to get passed this thing, to get over the wall of whatever was holding him back.
“Well,” I said, “we need to get the chores and lessons done before computer time. And I want you to have your computer time. So we'll just have to figure out how we're going to do that.”
He didn’t answer, so I walked away to do a few things elsewhere, making sure he knew I wasn’t upset, that I wasn't storming out in annoyance. That gave him time to be with himself and not feel pressured or worried about my being mad at him. And it gave me time to do some other things and to stay regulated myself. When I came back in and sat down nearby, he said the most remarkable thing.
“Mom, I hate when this happens. I can't tell if there's something really wrong, like I might be getting sick, or if it's just that I don't want to do the stuff I don't want to do.”
“Wow! That is so perceptive!” I said. “I feel that way in my own life sometimes.”
“Yes,” he continued. “So, if I don't do my chores and stuff and I'm really just trying to get out of doing the stuff I don't want to do, that's a bad lesson for me. But if I really am not feeling well, it would be the right thing. It's so hard, Mom! I hate when I feel this way!”
I energized him for talking about it all so well, with such clarity and honesty and self-awareness. I told him I totally got it, and that I also wondered which it was sometimes with him when he's in this sort of place, that I don't want to teach him that it's okay to skip out on the stuff he doesn't want to do but I also want to understand what else might be going on that's causing the resistance. We sat there in silence for a moment.
“Mom. I wonder. I wonder if my unconscious is doing this to me because this afternoon is the social coaching group and last week I had a really hard time there. And I'm worried about how it will be today so I'm not sure about going and that's making me upset.”
It blew me away. I had just, moments before, had the same thought. I wondered if he was in a dark cloud of worry about the upcoming group meeting without really knowing it. He knew I had called his teacher to talk about the issue from the week before so I asked him if he'd like to know a bit about what was said and he said yes which initiated the most amazing conversation. It greatly relieved him, and before you knew it, he was happily and cooperatively and energetically folding the laundry while we talked about the brain and regulation, about things that make it hard for people to stay in balance, things that come both from inside and outside, things that are both physical and emotional. He really got it. “I feel like I’m getting more connected” he said with a satisfied sigh.
When we were done, his manner and mood were completely transformed. He jumped up, grabbed a pile of dishtowels to bring down to the kitchen, darted back in moments later to pick up another pile. “Mom!” he practically sang.  “I feel happy! I feel so good about myself!”
When I am in the Kids Do Well When They Try, I close down. Tito can feel the difference. He just can. He may not always be able to articulate it but he doesn’t need to; I can see it and feel it. In him and in me.
When I am in the Kids Do Well When They Can, I am softer inside, and grounded in my belief in my son’s underlying good intentions. I can respond to his resistance (and he can be remarkably resistant!), his avoidance and arguing, in a way that doesn’t escalate the situation. I’m in my scientist mode, investigating (internally) what might be going on, practicing curiosity rather than practicing annoyance or anxiety. I know he feels better when he does well, when he follows the rules, when he hangs up his coat, puts his shoes in the cubby, cleans up his toys, sets the table without being told many, many times. I see it in every aspect of his manner, including what he actually says. I know he wants to be, and feel, successful. I want the same thing for him. I want the same thing for me.
I so identify with Kyra here.  One of the most difficult things for me in trying to support Philip has been to stay regulated myself when he gets stuck in negativity.  It will be hard for parents of typically developing children (and for parents of children with autism whose children don’t have the kind of autism profile where negativity can sometimes feature heavily) to get into our shoes here and really understand what a huge impact this can have on a parent.  It can really, really drag you down.  Sometimes when this happens for us, I can get very stuck – not necessarily on feelings of frustration but on feelings of desperation.  I don’t know what to do and I just can’t see a way to help Philip out of it, but I so don’t want him to go into the negative spiral because I know how soul-destroying that can become for him.  My own feelings of desperation and helplessness start to close down my ability to identify different options for solving the problem or even looking at the problem from a different angle.  It’s kind of a vicious circle.
I love what Kyra did here when Tito got stuck.  She took a ‘collaborative problem solving’ approach when she said:
“Well, we need to get the chores and lessons done before computer time. (Define the problem)
And I want you to have your computer time. (Empathy)
So we'll just have to figure out how we're going to do that (Start the process of identifying options for a solution – together).”
Then she walked away calmly and got on with other chores – leaving Tito space to think and giving herself a few minutes to gather her thoughts and contain her emotions.
She preceded this with mindfulness – being self-aware enough to realize that she was getting tense and anxious in anticipation of a potential power struggle.  She describes ‘the nervous voice in my head whispering, Oh no, here we go…….’
This is the crucial point I think – if we can catch ourselves at this moment and tap into the emotional resources that enable us to stay calm and flexible, then we have a much better chance of a positive outcome.
Sometimes it’s not possible to tap into these emotional resources.  I agree with Kyra’s opening statement – that our ability to remain calm in the face of a challenge is affected by states of wellness, amount of sleep, types of food, time of year, cycles of the moon, not to mention our moods, our partner’s moods, the weather, and who knows what else.
But Kyra got there……and what an outcome she and Tito had….…it blew me away JJ 
It seems that Tito was preoccupied by his anxiety about the afternoon’s social coaching group and that this anxiety knocked his psychological balance and eroded his motivation to engage.  Fostering and sustaining motivation in children with autism who have impaired resilience....for some of us, that is our biggest challenge.
Leaving Tito alone (and crucially, in a state of mind that wasn’t encumbered by his Mum’s feelings of anger, disappointment, frustration etc.) allowed him time to have his own reflections.  Initially he was able to identify that he was demotivated but didn’t really know why.  He observed that he’s felt like this at other times and Kyra validated his feelings (more empathy) by sharing that she too sometimes feels like this.  Then Tito was able to think about why he might be feeling out of sorts and even to pinpoint the exact reason….what a watershed moment this was for him:
“I feel happy! I feel so good about myself!”  It gives me Goosebumps every time I read it.
I don’t think I need to say any more here except a really BIG thank you to Kyra for sharing her magic with us.
You can read more from the awesome Kyra here.