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Autism still misunderstood

Following, Panorama's shocking programme, Phoebe Caldwell, an expert practitioner in Intensive Interaction and a regular speaker on our Partners in Policymaking courses, blogs about how people with autism are still misunderstood.

phoebe caldwell

Autism is a condition that is still widely misunderstood, not just among support workers but also at management level. Since the information processing system is like a bottleneck, the sensory experience of those on the spectrum is grossly distorted, overloaded and often extremely painful. A child tells us that it is like having his head in a car-crusher. While their sensory (eyes, nose, etc) systems may be working, the processing of incoming information to the brain is skewed so that they do not necessarily, see, hear or sense the world we share in the same way as those not on the spectrum. Over-activity of the autonomic nervous system leads to behavioural distress and sometimes severe aggression towards self or others. We can get some idea of what it can be like by watching a small clip made by an unnamed woman with autism of her experience of sensory overload. She says that her brain is like a dial-up modem instead of a cable modem, that is, if it is fed too much data it will crash. Those who experience this say they will do anything to stop it - hence the outbursts.

Even if staff responses are not as horrific as the treatment of vulnerable adults at Winterbourne View, attempts to control such outbursts without addressing their origin only inflames situations. Even trying to talk people down adds to the sensory confusion since the speech areas in the brain are virtually always affected.

Training needs to address the construction of an autism-friendly environment and reducing confusion by, 1) identifying and reducing sensory triggers to sensory overload and 2) increasing signals that do have meaning for the brain. Included in this latter approach is the use of Sensory Integration -strong physical input, and of Intensive Interaction - the use of body language to set up emotional engagement.

Using Intensive Interaction can make a real difference to the quality of life for a person with autism and those who are interested can find information on,

http://www.intellectualdisability.info/how-to../intensive-interaction-using-body-language-to-commmunicate/?searchterm=intensive%20interaction

and references on

www.phoebecaldwell.com

One of the problems in the care of those with severe autism is that many care homes are being run by organisations that do not understand the nature of autism and whose managers have no up-to-date training in the specialist care that is needed. Even  'love is not enough'. This is because the sensory environment that is pleasant for a non-autistic person may be painful and stressful for an individual on the spectrum. What is needed is not a bright cheerful environment but, visual and auditory tranquility. Everything needs to be measured by this.

And what evidence is there that Intensive Interaction works?  Apart from a massive accumulation of anecdotal evidence, Nind and Kellett (2002) show a significant decrease in disturbed behaviour in adults with learning disabilities when their support staff engage with them through corresponding actions. A recent survey commissioned by Mencap and the Department of Health, on communication with people with PMLD, Goldbart, J. (2010), finds that Intensive Interaction is one of the approaches most widely used. Over 85% of Speech Therapists in the survey were using it. Frame by frame analyses of videos by Zeedyk, Caldwell and Davie show that even if the time-line varies, there is always a significant increase in eye contact, proximity and social responsiveness when Intensive Interaction is used.

 

Nind, M. and Kellett, M. (2002) Responding to individuals with severe learning difficulties and stereotyped behaviour. Challenges for an inclusive era. European Journal of Special Needs Education 3. 265-282

Zeedyk, S, Caldwell, P. and Davies, C (2009) 'How Rapidly does Intensive Interaction promote social engagement for adults with profound learning disabilities?' European Journal of Special Needs Education, Vol 24. 2009, p.119-137

Intensive Interaction Training Films

Caldwell, P. (2002b) 'Learning the Language' Pavilion Press

Follows a three day intervention using Intensive Interaction to get in touch with a young man with very severe autism, using his body language, followed by discussions with Care Staff.

Caldwell, P.  (2004)'Creative Conversations' Pavilion Press. Intensive Interaction being used with people with multiple disabilities, mainly severe Cerebral Palsy.

Caldwell P (2007) 'Reaching Ricky' Teachers TV Made by 'Available Light' . Working with a child with autism in school.

Caldwell, P.(2009) Autism and Intensive Interaction: using body language to get in touch with children on the autistic spectrum'. Jessica Kingsley Publishers. Includes a twenty minute uncut Intensive Interaction intervention with an eight year old child, whom staff cannot make contact with and whom Caldwell has never met before. The film moves from initial rejection to total attention. Other interventions with children aged 3-18. http://www.phoebecaldwell.co.uk/films.html

If you would like to blog for us, please email communications@in-control.org.uk

 

3 comments for “Autism still misunderstood”

  1. Gravatar of Buba JongaBuba Jonga
    posted 09 September 2011 at 12:34:35

    Brilliant. This article is informative and educative. Well done to the author. Bravo!

  2. Gravatar of RICKY MARDELLRICKY MARDELL
    posted 20 December 2011 at 15:21:40

    MANY THANKS. I FOUND THIS INFORMATION VERY USEFUL. RICKY

  3. Gravatar of KT JonesKT Jones
    posted 05 October 2012 at 12:17:11

    Hello, I really enjoy reading your blog. The things that people struggle with the most are those basic daily activities. I found out about these magnetic pictograms which have helped to reinforce those daily tasks and develop important life skills whilst still having fun!

    http://www.mag-print.co.uk/educational-pictograms-education-personal-hygiene

    I also now put this star chart on my fridge so all the kids know when they have done a good job!

    http://www.mag-print.co.uk/childrens-magnetic-star-chart

    Enjoy, and good luck!!

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Last Updated : 08 June 2011. Page Author: Laura Bimpson.