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.