#AutismPositivity2012 Flash Blog

Hello everyone.  I'm participating in the #AutismPositivity2012 Flash blog.  Here is a message from the folk behind the event:

The Autism Positivity Project has been co-created as a collaborative effort by the blogging collective: Thinking About Perspectives. We are a diverse group composed of parents of children with autism/autistic children, partners of autistic adults, and autistic adults, committed to increasing autism awareness and acceptance via open and respectful dialogue.

We share a common vision and goal. We want to have a positive impact on spreading understanding, mindfulness, and supporting those with social cognitive challenges or different ways of seeing and interacting with the word.

Our positive stance and openness to learning from our varied perspectives is deepening our understanding.

Here is a short explanation of the inspiration for the Flash Blog:

A couple of weeks ago, someone somewhere googled “I Wish I Didn’t Have Aspergers”. The phrase popped up in a blogging dashboard and struck the blogger as being particularly sad. She wished she could have answered.

We don’t know who it was. We don’t know where he/she lives. We have no idea if he/she found what he/she was looking for in that search.

We do know that search directed that person to a blog. We do know the searcher clicked on it in an attempt to find what they needed. And we do know enough about the challenges of autism to know that person is likely not alone in that sentiment.

So, we got to thinking. What would we say to that person? What if it was a kid, desperately trying to make it through tough years of intolerance and ignorance? What if it were a person who might never stumble across the amazing voices speaking for autism acceptance? What if that person thought himself/herself all alone? What would we say about the present? What would we say about the future? What would we say about happiness? And hope?

Each of us in the autism community –- self-advocates, parent advocates, friends and family, teachers, health professionals—we would all have different messages for #IWishIDidn’tHaveAspergers. But likely we would all try to send the message that there is a brighter future and that friendship and support are out there.

We are asking every blogger in the autism community to write a message of positivity to #IWishIDidntHaveAspergers. So that next time that individual (or another) types that sad statement into Google, he or she will find what they need – support, wisdom, and messages of hope from those who understand.

Here is my contribution to #IWishIDidntHaveAspergers:

I’m Mum to an outstanding almost teen with Asperger’s.  He is very smart, funny, kind, generous and loving and he is also very impacted by his condition.  Over the years, we have used a social communication intervention called Relationship Development Intervention (RDI) to work on some of the difficulties at the heart of autism.  He is now great at taking perspectives, having lots of meaningful reciprocal conversations, and really being interested in what other people feel and think about things.  This has enriched both his life and ours – he is much more connected to us and to the world.  He has got a ‘best friend’ (who also has Asperger’s) and he thinks about his friend’s point of view and accommodates his friend’s difficulties.  His friend doesn’t follow an RDI programme and so is much more rigid about things sometimes whereas my son will negotiate and (mostly) patiently generate options for solutions to a conflict, so that his friend doesn’t become anxious.  It’s really hard for my son to do that, which shows you how far he has come.

I write about how we have worked on his difficulties and the theory behind RDI on my blog http://notnigellanotjamie.blogspot.com

My son is still very impacted by his difficulties with emotional regulation, but we are working on these and he is already showing progress by stopping and thinking about things when he gets upset or angry.  In the past, he has just hit out, physically or verbally.

Following our mutual practising of emotional regulation using RDI, he’s even helping me with my own regulation when I’m angry or frustrated……I have the red hair gene, so that’s not infrequent ;-) 

It’s possible to use this kind of intervention to work on those parts of the Asperger’s that cause you the most difficulty.  My son says to tell you that it's hard work, takes a long time, you will need to be patient, you don’t need to lose the parts of your Asperger’s that you like and it’s worth all the effort.

I know how hard it is when Asperger’s or autism really impacts on your ability to have friends, relationships, a job, to live independently and to have good emotional health and wellbeing.  It breaks my heart when I hear about Aspies who are slipping into mental health problems because they feel lonely and isolated but it doesn’t have to be like that. 

Let’s not forget that there are people with Asperger’s out there who are living happy, fulfilling lives. 

 If you are someone with Asperger’s who doesn’t fit into that category then remember that you can change those parts of your condition that cause you difficulty if you want to.

More on reflex integration in autism

As a result of my two last blogposts, there has been some interesting discussion about how impaired reflex integration may contribute to the child with autism not being able to give the parent the feedback that is necessary for the parent to know where to pitch the tiny interpersonal engagement-related challenges that are so key to development of thinking in the very early stages of baby-hood.

It is the breakdown in this crucial feedback loop that prevents the guided participation relationship from acting (via interpersonal relatedness) as the 'cradle of thought'.

I’m including here some further observations by Kimberly and Claire on how reflex integration may contribute to the breakdown in the guided participation relationship.

First, over to Kimberly:

Our discussion has made me think differently about remediation. It makes sense to me to start with the reflexes first, make sure that they are firmly in place and work up the brain stem just how it happens in normal development. In normal infant development it is movement that integrates the reflexes.

Take a look at just one movement - the belly crawl. Just some of the things it can do for the infant: stimulates horizontal eye tracking, early head movement helps the skull to round out, stimulates the nerves that go to the muscles that pull the eyes into correct alignment (in the case of crossed eyes or over convergence), helps with heel to coccyx alignment, strengthens the arches in the feet, promotes cervical and lumbar spine stability, and neck strength, so helps the development of the mature s curve from the infant c curve, makes the child aware of the genital area through ventral stimulation, and helps with on time toilet training, stabilises the hip sockets, helps with the supination and pronation of the lower arm, helps the hands to open out from the grasp reflex to eventual cortical control, creates a feeling of vertical throughness which helps the child to feel grounded, is the first self determined movement, seems to be connected with brain stem development, and functions that ensure survival: accurate perception of pain, heat, cold and hunger, builds a sense of self, and is the basis for development of empathy and compassion. You can deduce the implications of missing out on building these foundations (source Bette Lamont Developmental Movement Center, Seattle).

I'm trying to put together a website with all this information and my thoughts on remediation after doing everything wrong & backwards, but here are a few of my favourites. There's a chart on Goodchild's (Neurological Reorganization) website gives you a basic idea of the brain stages and how it affects sensory and motor development:

http://www.activehealing.org/HTML/howitworks_ontogeny.htm.

I love Sally Goddard's book (INPP) "Reflexes, Learning and Behavior" for a more thorough explaination. A quick overview can be found at Sonia Story's (Rythmic Movement Therapy & Brain Gym?) website http://moveplaythrive.com/images/pdf/integrating_reflexes.pdf and Svetlana Musgatova (MNRI) has some ways to learn more at http://masgutovamethod.com/learn-more.

There's a lot of information out there even though it comes from different camps and there are even more out there. It really makes sense to me. It's just hard finding people who really know thoroughly about all this near me. We have been doing NR for a little over a year. It is so slow. It is not uncommon for kids to take 3 years in the program with the average being 18 months. I have seen minor improvements but I stick with it because I often hear from NR graduates that sometimes it just clicks one day. I might have chosen the slowest method, but for right now it is the cheapest. So RDI is technically on hold until NR is finished but as always we continue the RDI lifestyle and higher level skills.

For my son to be fully remediated we will need to get the vision piece down and I thought if I am going to work on one area I should make sure all are solid. I was surprised to find that out of 9 basic reflexes, 8 were not fully integrated/developed. I think it is amazing how far he has come having to work extra hard to compensate. Our kids are amazing! -Kimberly

Kimberly, I’m really looking forward to your web site, and thanks so much for your insightful contributions to this discussion.

Now, over to Claire:

Hi Kimberley

I think Dr Gutstein used to refer to “obstacles” that impeded the progress of RDI programmes.  Issues such as you describe clearly fall into that category. 

I agree with you that RDI works principally at the cortical level of the brain and that neuronal connections in the cortex are made at a developmentally later stage. As you suggest, reflex development is involved in the development of the “lower” parts of the brain – including the brainstem and cerebellum and limbic system.  These systems are involved in getting on with what should be “automatic” functions like balance, co-ordination, sensory modulation, emotional regulation.

Just to give a couple of examples to illustrate – though please bear in mind that it is always somewhat artificial when you extract elements from a complex, interdependent system!   Firstly you mentioned your son’s problems with vision.  Reflex development is directly associated with the development of all the visual skills I wrote about previously – fixating, tracking, shifting from near to far vision etc.  For instance if the Moro reflex is not inhibited at the typical age of 2 to 4 months the infant will continue to be drawn to movement and light in his/her peripheral vision.  If the ATNR reflex is not inhibited by about 6 months tracking across the midline will be very difficult.  IF the STNR reflex is not inhibited to allow the infant to crawl properly accommodation (switching from near to far vision) will not be learned as it should.

As a second example – returning to the Moro reflex – if this is not inhibited at the appropriate stage then light and movement in peripheral vision (amongst other stimuli) will continue to cause a startle reaction.  The infant may develop all sorts of coping strategies.  You may see “body armouring” – ie being rigid and tense to prevent responding physically to constant stimuli that startles.  In your son it may be that – and this is just one suggestion – that he has learned to narrow his field of vision because he is so distracted and disturbed by his peripheral vision.  In other words he is trying to reduce his exposure to the anxiety caused by specific visual stimuli that triggers the startle reaction.  The startle reaction involved in the moro reflex is very different to the adult startle reflex.  In the adult something causes them to startle but then they pause, orientate to assess the significance of the stimuli (ie is it dangerous, unpleasant, important) then either ignore it or take appropriate action.  In young infants or people where the moro is still active the reaction is an emotional one.  The cortex does not immediately  kick in and say I don’t’ need to worry about that its not important.  Clearly, in autistic children, the cortex often/always kicks in later but it is too late as the intense emotional response (and sometimes “impulsive” or automatic response) has already taken place and the memory laid down that that stimuli creates a very unpleasant response that is to be avoided at all costs. 

If you look up Joseph le Doux who writes about the “emotional brain” he essentially summarises mental wellbeing (like “emotional regulation” in autism) as being about the connection between the cortex (thinking brain) and the lower parts of the brain (like the amygdala).  In a healthy well regulated system sensory stimuli is sent to the cortex for analysis so that the emotional response and the course of action taken is in proportion to the significance of the sensory stimuli.  In our children the connection from lower to higher brain is too weak and/or too slow – so you get an unregulated emotional response and an impulsive course of action.  Hence you can see how important it is that reflex development enables the lower brain to function automatically, thus putting in place the foundations for the development of the cortical brain and the effective interaction between the two.

Thank you Claire and Kimberly.  I have learned so much from this exchange via my blog. 

Reflex integration is definitely something I now want to explore more through school www.brightfuturesschool.co.uk and school will be commissioning Claire to come over and do assessments on those of our pupils who will find it easiest to engage in the assessment and subsequent exercises.  I think also that between us, me and Claire might think about blogging here about what the findings are, what treatment/exercises are recommended and what our progress is.

Watch this space!

Reflex integration and autism

In my last blogpost, I looked at the implications of autism being viewed primarily as a disorder of interpersonal relatedness.  I noted that taking this view gives us an explanation as to why the triad of impairments occur together - because good social interaction, communication and flexibility of thought and imagination all develop as a result of the interpersonal experiences and communication shared by child and caregiver in the early years.

One of my readers asked an excellent question in response to the blogpost:

'How does all this fit in with reflex integration that so successfully helped my autistic son?'

I responded by saying that I don't feel I have sufficient expertise to answer that question, but I know a woman who does.  I'm handing you over now to my good friend and colleague Claire, who very kindly gave a detailed response that I have decided to feature as a blogpost, rather than hiding it away in the 'comments' section.

Claire's response

Hi Motivatedmum

I’ve just qualified as a neurodevelopmental therapist (INPP) so am delighted to hear that a reflex integration programme made a real difference for your child.  It would be interesting to hear more about which programme you followed and what differences it has made for him.

I’ll attempt to answer your question about how this might fit in with Zoe’s post about autism potentially being reversible if you work on what Peter Hobson describes as a disorder of interpersonal relatedness.  But please bear in mind I’m hypothesizing based on what we know about autism and neurological development.

I think Peter Hobson accurately describes what happens developmentally in all those on the autistic spectrum.  In simple terms the guided participation relationship between the child and the caregiver breaks down resulting in the range of symptoms/behaviours we broadly recognise as “autism”.    This clearly occurs in every case of autism.  Outside the scope of Hobson’s work though is the question of why this relationship breaks down.  And the answer to that is that there are doubtless a number of 'reasons' – 'reasons' that we may later come to recognise as the different 'causes' of the various phenotypes of autism. 

Zoe highlighted a couple of potential 'causes' in her post – the absence of vision which is key in developing  the infant/caregiver relationship and the absence of a “caregiver” in cases like the Romanian orphans.    The latter is somewhat different to autism as the breakdown in the relationship occurs on the caregiver side of the equation.  In autism and a subset of (not all) visually impaired infants the breakdown occurs because of disordered functioning on the part of the infant. 

Of course there are many other reasons for this relationship breakdown.  Based on what we know now we are likely to identify other causes in atypical immune responses, environmental “toxins”, atypical sensory functioning etc.   Theoretically once we are able to identify and address the specific cause of someone’s autism we can “cure” it – if I can use that term without being pilloried.  So, for instance, if visual impairment lies at the heart of an individual’s autism restoring sight would “cure” the autism – but only, of course, if the “cure” is applied at developmentally the right time.    In the case of vision the right time developmentally would be no later than the time of birth as vision plays a critical role in the development of the interpersonal relationship from that moment. 

If vision is restored later in life or at the point when the visually impaired infant learns to use other sensory systems (auditory/tactile etc) to develop the interpersonal relationship his/her development will already be seriously delayed and/or disordered.    One of Zoe’s points is that approaches like RDI that work on establishing the interpersonal relationship can be used effectively in either case (ie either if the cause of autism is addressed later in development or even if the cause is never addressed). 

As for reflexes specifically  and how this fits in I think that the issues an effective reflex integration programme addresses are potentially involved in one or more “causes” of autism.    There is a “blueprint” for the development of our reflexes.    Deviation from that blueprint can result in a whole range of cognitive, physical, communication, social, emotional, sensory dysfunctions.  In simple terms the stages of reflex development that we go through – before birth and in those very early months – entrain the many functions of the brain that need to happen “automatically” if we are to function effectively and efficiently.   So for instance typical reflex development leads to a fully functioning visual system (ability to fixate, to track across a page, to follow a moving object visually, to switch from near to far vision, to switch attention from one object to another, to block out peripheral visual input and focus until such time as you need to take in peripheral input etc etc).   These are all skills that should happen automatically.  In cases where the typical reflex development has not occurred much of the brain’s energy will go towards performing what should be automatic, thus reducing the capacity and the ability to perform higherfunctioning “thinking” skills like academic skills, executive functions, problem solving etc.   This creates a very stressed neurological system and a very stressed individual.  A person with such visual problems will not be able to recognise “patterns” and make sense of visual input, they will be drawn to non significant objects/ people in their environment, they will not be able to deal with new situations .  If you want to examine one specific aspect (why aren’t autistic infants addicted to facial gazing) it is likely they may not be able to fixate (so how could they be addicted to faces as is necessary), they are likely to be drawn to visual movement (hence look at mouths that move more than eyes etc). 

The problems associated with  vision are similar to all the other senses (auditory/tactile/proprioceptive /vestibular ) but I don’t have space to expand here.   

So clearly if such problems lie at the heart of an individual's autism, addressing reflex development is key.  But, in addition, using  an approach like RDI to help to re-establish a more typical developmental trajectory as underpinned by interpersonal relationships is also important. 

I’m not sure if that helps at all.  Let me know!

End of Claire's response

If anyone would like to know more about reflex integration and development and how movement feeds the brain's development, Claire has kindly offered to write a follow-up blogpost to explore this in more detail.

Click this link for more information on INPP and how to find a Practitioner.

And a big thanks to Claire for her guest post :)

Is autism primarily a disorder of interpersonal relatedness?

A short post today in response to a new piece of research that adds weight to a major theoretical plank that underpins Relationship Development Intervention (RDI) as an intervention for autism.  

'The Cradle of Thought' by Peter Hobson develops the proposition that autism is a disorder of interpersonal relatedness: something interferes with brain development early in life which derails the typical developmental process.  In typical development, we know that flexible, adaptive thinking (and therefore flexible, adaptive behaviour) develops through the social interaction (interpersonal relatedness) between the child and his/her caregiver.

  

One of the many things that I like about the Hobson hypothesis is that it gives us a unifying theory for the triad of impariments: good social interaction, communication and flexibility of thought and behaviour all develop as a result of the interpersonal engagement that takes place between child and caregiver in the early years.  Studies in the fields of child psychology and child development have shown us that social referencing, joint attention, joint engagement, theory of mind, executive functioning, perspective-taking, the 5 stages of intersubjectivity and many more key thinking competencies all develop as a result of this interpersonal engagement in the early years.  

Without mastery of these developmental milestones, there will inevitably be impairments in social interaction and communication plus rigid and repetative behaviours.  These milestones are what enable us to take different perspectives, understand others, contrast our thinking to theirs, think flexibly and to cope with (and enjoy) change and uncertainty.

Earlier today I was introduced to a study (thank you fellow blogger Paul Whiteley) 'Reversible autism and intellectual disability in children' which appears to provide further support for the theory of autism as a disorder of interpersonal engagement.

I was particularly struck by the evidence in the study for early institutionalisation and blindness as 'causes of autism in a minority of cases' and the 'reversibility of autism' in these cases.  The 'Cradle of Thought' also studies children from these sub groups.  In 'Cradle', in the majority of cases of children in these sub-groups, children no longer met the diagnostic criteria for autism when the institutionalised children (who suffered social deprivation in the orphanages of Romania) were re-habilitated (via interpersonal engagement) and when the blind children found ways to link with other people on a personal level (lack of sight was found to be a major impairment to interpersonal engagement.)

I think what this tells us is that the triggers for brain disrpution that lead to autism may be many and varied, but these triggers seem to result in a similar outcome - the derailment of the typical pathway of development......a chain reaction of missed developmental milestones  that eventually leads to a diagnosis of autism.  If a child doesn't master social referencing (looking to see what a guide or communication partner thinks about something and then using the partner's thinking to direct their own action), s/he definitely won't go on to master the initiation of joint attention (directing a social partner's attention towards an object with the purpose of sharing thinking/feelings about the object).  Without joint attention, there can be no joint engagement (active and sustained involvement in a joint activity with the intention of sharing experience/emotion).  

Here is a clip of me and Philip from 2008 tidying the train track that shows both joint attention and joint engagement.  I can't get the video to embed in the blog, so am having to provide a link instead :(

http://www.youtube.com/watch?v=XVRbgraHiOc

There is some good joint attention e.g. at 0.34 when we both look at the track tub as we throw our pieces in, then look at each other to share our emotion about our success in 'getting a turkey' (three pieces in a row).  Joint engagement happens throughout the interaction - notice how much Philip is enjoying our pattern of throwing pieces in at the same time and enjoying the variations we do around this.  Both if us are varying the pattern and we can see that he is emotionally invested in this (enjoyment, smiling, feelings of competence) and therefore motivated to keep going with the activity.

When children fail to master all these fancy-named higher level thinking competencies, we are left with children and adults who often get 'stuck' in their thinking and who crave routine and sameness.  It is a developmental domino effect.

I think the research also tells us that with the right intervention (as above, social interaction that fosters interpersonal relatedness) some children who initially meet the criteria for autism will no longer meet these criteria.

The finding that autism is reversible in these cases screams out (in my view) that it is social communication interventions which support the development of interpersonal relatedness that should be the priority for autism research.