Polly's pages (aka 'Donna Williams')

Ever the arty Autie

Learn to Speak ‘autistic’; an interview with Phoebe Caldwell on Intensive Interaction

June18

Icon by Donna Williams At one of my UK lectures a warm, solid personality sat not far from the front.  She exuded a feeling of stability, peace, acceptance and on the break she came over to my book table and gave me a book of her own.  Her name was Phoebe Caldwell

DONNA WILLIAMS:
Tell us about your qualifications and how you found yourself involved with people with autism.

PHOEBE CALDWELL:

I started as a biologist, raised a family and then started work in the local hospital for people with learning disability in the occupational therapy department. I was put in charge of a room with eleven very disturbed men (a number of whom were diagnosed as autistic) and basically my job was to keep them quiet. As the chairs and tables flew round, I realised that I needed to find a way of interacting with them, since just expecting them to sit quietly and leaf through catalogues was not helpful for either them or me. I talked to the psychologist who told me that at that time, (thirty five years ago), little was known about how one might engage with people in such distress, but that I should try and find out what their interests were and work through these.

By working in this way I gradually built up a reputation of being able to help people on the autistic spectrum and eventually was awarded a Joseph Rowntree Fellowship, which I held for four years. During this time, my supervisor was Geraint Ephraim, the psychologist who, in the 1980’s, introduced Intensive Interaction into this country. He taught me that the best piece of equipment I had was to use my body to engage with my partner’s  personal body language to communicate with them.

DONNA WILLIAMS:
And so its essentially this communication through movement which is Intensive Interaction. Option/Son Rise uses mirroring.  Is this similar?

PHOEBE CALDWELL:
Intensive Interaction is an approach that uses a child or adult’s own body language to develop communication with them. It looks for the feedback they are using to communicate with themselves and uses this to develop non-verbal ‘conversations’. To apply it, we take the initiatives the child/adult is making in the way of sounds, movements and behavior and use matched responses to tune into how they feel. It is a technique that is extremely successful in establishing emotional engagement, particularly with those on the autistic spectrum who have withdrawn into their own world. It shift’s their attention from solitary self-stimulation to shared activities.

Based on the infant-mother paradigm, Intensive Interaction is more than just copying. While it may start with imitation, it extemporizes on the partner’s behaviours. This avoids habituation and the ‘conversations’ rapidly open out. We pick up on what they introduce and vice versa, not just what they do but how they are doing it which tells us how they feel. It is that affective engagement that helps us to really tune in to each other. Intensive Interaction  is respectful and works with adults as well as children, not treating them as infants but using one of the most basic communication processes that we all retain all our lives, that is, we respond to what we recognise easily.

In the context of autism, it is fascinating to observe how quickly the partner’s stress level reduces, often in  minutes, as soon as the brain recognises signals from the world outside that are significant but do not need to go through elaborate processing, since they are already part of the brain’s own repertoire. The brain starts to function more effectively and demonstrates the abilities that are not associated with autistic spectrum disorder, such as the ability to copy, take an interest in their surroundings, to generalise, socialise, and even sometimes to speak where there has been no speech before. When we do work within their repertoire it is clear that they do recognise the body language of their partner.

DONNA WILLIAMS:

Yes, I can highly relate to that, especially as someone faceblind with a level of social emotional agnosia and relatively Alexithymic.  The mirror reflection was the person of greatest safety.  She didn’t confuse me.  Later I wanted other children to do the same actions as me, but they didn’t understand.

One girl did and, you’re right, I expanded on this, exploring further ways I could get to watch someone else share my experiences and to see my experiences externalised (for in Alexithymia it is very hard to experience one’s stuff internally).  These weren’t usual interactions.  I wanted to explore sensory and physical experiences, what it was to have someone scream in my ear to cause tickling and for me to watch them experience me doing it to them.  I wanted to watch us each drink water until we were about to burst, to choke ourselves until we felt pressure in our heads… pretty autistic stuff… but what people miss is that I WAS interested in another child, I DID want to share experiences and the expression of feelings, but I needed this to begin at a comprehensible starting point.  And as someone meaning deaf, relatively meaning blind with very poor capacity to process my own sensations, I had to use the systems I did have as that starting point.  I feel you’re saying this too.

PHOEBE CALDWELL:

Recent research with Dr. Zeedyk of Dundee University Psychology Department has used frame by frame analyses of filmed interventions and clearly demonstrates that when using Intensive Interaction, there is always an increase in eye contact, desire for proximity and social responsiveness. (See reference list). Ongoing investigations also suggest that this also helps to establish contact with some partners who do have speech. When they are disturbed, using their distressed sounds softly can help reduce their upset behaviour by drawing their attention away from the confusion and pain that the brain is experiencing.

DONNA WILLIAMS:

That is so interesting.  I got functional language by late childhood and in my teens I could swear and rage and I had this boy by a 2nd floor window and I had a chair over my head and was shouting ‘jump, f—— jump’.  I had this over articulated way of swearing which was very characteristic.  And the science teacher used my own tone and articulation and shouted in this commanding straight forward manner ‘Donna Williams, don’t you f——- swear in my f——- class’ and I stopped dead as if listening to someone ‘like me’ and calmly put the chair down, completely snapped out of my oblivious rage.  I feel my father also used my own behaviour and styles to reach me and that inspired me a lot in writing about an Indirectly Confrontational Approach in my works on Exposure Anxiety.  And I see a strong parallel between that and Intensive Interaction which is also designed to avoid triggering defense responses.

How do you feel Intensive Interaction contrasts with approaches like ABA, Teacch or Lovaas?

PHOEBE CALDWELL:

So much of the work with people  with autism is based on trying to frog-march them into the neurotypical world, without consideration of how the brain of those on the spectrum is operating. The object of Intensive Interaction is to provide an autism-friendly environment that allows the brain to function at its optimal level. To summarise I think the difference between the above approaches and Intensive Interaction is that the Intensive Interaction focuses on motivation rather than management. It starts where the partner is at and builds on what the brain can manage without raising the stress level.

DONNA WILLIAMS:

How does it contrast with approaches like Option, Floortime or RDI?

PHOEBE CALDWELL:

I think that the starting point for the above approaches is probably the same as for Intensive Interaction, that  is, the infant -mother relationship. My limited experience of alternatives to Intensive Interaction (since I have never needed to explore alternatives) is that Intensive Interaction is much more flexible, in the sense that it works from the current behavior, even if this is negative. It does not require for example, a dedicated room as in Option/Son Rise, since as soon as the brain sees a signal it recognises, it latches on to it like iron filings to a magnet. Intensive Interaction can be carried out in a busy classroom. I also use it as an ongoing way of keeping in touch rather than in sessions.

It is easy to learn and one does not even have to be an expert – for example, a group of students in Romania, were able to improve contact significantly with children after twenty minutes induction. (See reference list).

DONNA WILLIAMS:
You’ve found value in some of my own work.  What is it about my works that fits in with the approach of Intensive Interaction?

PHOEBE CALDWELL:

The approach I use does not just stick to Intensive Interaction but is a combination of (1) paying attention to sensory distortions, (2) Sensory integration and (3) Intensive Interaction.  I have learned most from your videos, both the early NBC ones and more particularly the film, Jam-Jar which I have seen hundreds of times and am still learning from.

DONNA WILLIAMS:

Wild.  Now that’s perseveration!  I’m in the process of acquiring the rights to Jam Jar so I may be soon able to make it available to the public.  I hope you also get to watch the film, Nobody Nowhere when it’s made, although it won’t actually be me in it 🙂

PHOEBE CALDWELL:

For me this footage really opened up the autistic point of view and I am extremely grateful since it underlies a great deal of what I am able to do. It is not just what you say, but the body language that goes with it. An astonishing achievement. Particularly useful was the demonstration using cows as to the processing difficulties your brain encountered.

DONNA WILLIAMS:

Totally.  I totally know what you’re saying.  It is how Exposure Anxiety ‘speaks’, how meaning deafness ‘speaks’, how face blindness, social emotional agnosia or Alexithymia ‘speak’ in interactions with others, with objects, with the the world.  You’re obviously an anthropologist 😉

Who do you feel Intensive Interaction might most help?

PHOEBE CALDWELL:

Although it may sound a sweeping claim, it is difficult to remember when I last saw someone on the more severe end of the spectrum with whom it was not possible to improve communication and I do see some of the most disturbed people in the country.  It is most extraordinarily effective.

DONNA WILLIAMS:
Tell us about your book Finding You, Finding Me.

PHOEBE CALDWELL:

This book was written in memory of a young man, Pranve, who I was asked to see by his Consultant Psychiatrist because he was so disturbed and attacking people that they were unable to find anyone to work with him.  Hypersensitive to sound, he lived on the edge of Heathrow runway. I stayed with him three hours using his sounds and his hand movements. By the end of the morning this virtually non-verbal man was singing a rhyme that neither his parents or speech therapist knew he was capable of. His parents took on the approach and we were able to turn his life round. Although he occasionally had off-days, his lively and loving presence came to the fore. He was able to return to activities in the community.  Sadly he died six months later following an epileptic seizure when the ambulance was sent to the wrong address and they failed to give him oxygen when they got there.

Also in the book, by way of contrast were two other men, one with extreme learning disability, Gabriel, who is the subject of the film ‘Learning the Language’ (see references) and the other a man who had Irlen Syndrome and began to talk when I suggested to his father that he install a green light in his living room. What is so important is a hoistic approach that looks at all aspects of the environment and capacities for communication.
DONNA WILLIAMS:

Yes, the colored light thing worked with me too, but in my case it was red.  Other colors had either no effect or sent me under the bed or staring through the wall.  But the red suddenly pulled the room together and I started exploring things I’d never looked at, and WONDERING which was something I rarely experienced.  So it was an experiment of my fathers, the lights, and it lead me to later seek tinted glasses to manage visual fragmentation.  That lead me to Irlen, but beyond that to BPI lenses which I use now.

You’ve had almost as many books published as I have!  Want to give us a brief synopsis of each?

PHOEBE CALDWELL:

Well, of the latest ones, ‘From Isolation to Intimacy’ covers a wider range of disabilites than just autism and takes a critical look at a number of the theories associated with it, and ‘Using Intensive Interaction and Sensory Integration with peole with severe Autism’, is what it suggests, a simple and practical handbook for those who support people with autism.

I am currently involved in a book that has been accepted by my publishers, Jessica Kingsley, called ‘Delicious Conversations’, the title of which is taken from an email from a highly intelligent man with autism who can type in Hebrew and english but not speak. He was self harming, which is why I was asked to see him. When he was asked if he found it in any way patronising to have someone use his non-verbal sounds with him he replied that on the contrary, when he was confused it gave him something to focus on instead of the autonomic
storm in his head – ‘like having a delicious conversation.’  This book puts the autistic and the non -autistic sensory experience side by side to see what we can learn from each other.

I should also like to draw attention to extremely simple free handouts available on the internet and the film, ‘Reaching Ricky’ wich is free to view on TEACHERS TV (see References)

DONNA WILLIAMS:
How have people with profound disabilities and communication disorders changed you and your own life?

PHOEBE CALDWELL:

Out of all recognition, from them I have learned the essentials of what it is to be human and loving.

DONNA WILLIAMS:
What would you like to see in the autism and disability fields?

PHOEBE CALDWELL:

To begin with, proper awareness of the nature of autism. The other day I was asked to speak at a training college where fourth year students were being sent out into schools for children with special needs and autism who had not had a single lecture on the nature of the sensory disabilites the children were experiencing!  They knew nothing at all about autism, just thought the children were difficult.

DONNA WILLIAMS:
Where can people find you on the internet?

PHOEBE CALDWELL:

http://www.jkp.com/catalogue/author.php/id/1342

or email : phoebecaldwell@btopenworld.com
DONNA WILLIAMS:
Thanks for the interview,

Warmly,

Donna Williams *)
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.

http://www.donnawilliams.net