Tis’ the season to… issue trigger warnings around shopping centres

In the area of profound intellectual and multiple disabilities we often talk about sensory focused practice: approaching people being mindful of their sensory preferences and challenges.

Today, I opt for a no-sense day. No, not a nonsense day, a no-sense day.

You see, yesterday my sensory system got flooded.

KMart should have warning signs: warning music will be louder (actually or just felt), your visual system will be bombarded with restocking of all the christmas crap, your proprioceptive and vestibular system will be shocked as you don’t know how to dodge the staff unstocking all the stuff with their boxes (and your won’t know how to find that copy of Bad Guys 5 because your memory will go into shut down), even your sense of smell is going to be attacked as the dial for everything is turned up.

You will go home, take migraine tablets and painkillers because your neurological system will cross all of the wires.

So today, I choose no-sense. All sounds will be barely audible, curtains will be drawn, smells will be nuetral or safely chosen, movements calculated and minimised, brain switched to slow, low, no…

I am thankful that I can choose and shape my no-sense day.

I understand why people hit out, bite, scratch, scream, bang their heads – desperate attempts to either control their systems or the explosions that come when control can not be gained. To hit, to scream, to run, to panic when the flood is uncontrollable.

Wishing everyone either the ability to regulate themsevlves or to be surrounded by insightful, empathic, educated, ambassodors to do the regulation when a person can not do it themselves. A hand to hold when the world is fragmenting; a guide rope to return to safety.

Intensive Interaction and those who appear to avoid engagement

Sometimes I long to return to the UK where, while they are struggling with many of the same issues as we do in Australia, there are a greater number of communities of practice, professional development, policy engagement focusing on people with severe and profound levels of intellectual disability (or learning disability as known there).

Here is one of the great upcoming opportunities that I’ve cut and paste from my inbox:

Dear Intensive Interaction practitioners and advocates,

This is a reminder about the 2019 Intensive Interaction Weekend Workshop: ‘Using Intensive Interaction with people who exhibit demand avoidance’ from Friday 18th – Sunday 20th October, at Hill Top Farm Barn, Malham, North Yorkshire. We still have a few final places left to fill. This inexpensive (just £95!) development event focuses on using Intensive Interaction with people who, to some degree, actively or passively avoid engagements with others (but don’t necessarily have a diagnosis of PDA!). Over the weekend we will look to address the following three issues:

  1. Why might demand avoidance occur for some of our learners or service users?  
  2. 2. How might demand avoidance be presented?
  3. How might  Intensive Interaction help us work with people who present with some level of demand avoidance?

I have attached an application form for this event above, but if you would like more information please don’t hesitate to contact me at: graham.firth@nhs.net or by phone at 0113 8555162.

HOP workshops…

It’s been nearly two years since my injury that has taken me away from the work that I love.

But I’m pleased to say now that I will be running a HOP workshop on the 24th May 2019 in Eltham, Victoria.

If this goes well, I’d love to run more workshops.

HOP workshops are great opportunities to talk about how to interact with people with profound intellectual and multiple disabilities, and discuss the taboos and issues that might get in the way of having quality interactions with people who don’t use or seem to understand speech.

Link to HOP workshop


“How adults with a profound intellectual disability engage others in interaction” – a powerful, provocative article

Just wanting to share my favourite reading at the moment. The article is simultaneously complex and straightforward. They use a complex method of conversational analysis to look at natural interactions occurring between some staff and people with profound intellectual disabilities. Their findings are straightforward: staff are in a dilemma. They are use “typical” communication patterns with people whose communication needs are far from typical. Successful interaction is not happening.

It is a wonderful challenge handed to us to explore, use, and share a different way of communicating. It is a challenge to anyone who “trains”, “teachers”, “mentors” staff who engage everyday with people with profound intellectual disability to learn the optimal individual language that may defy neurotypical rules. It challenges us to change the rules of engagement.


Antaki, C. , Crompton, R. J., Walton, C. and Finlay, W. (2017), How adults with a profound intellectual disability engage others in interaction. Sociol Health Illn, 39: 581-598. doi:10.1111/1467-9566.12500


Using video records of everyday life in a residential home, we report on what interactional practices are used by people with severe and profound intellectual disabilities to initiate encounters. There were very few initiations, and all presented difficulties to the interlocutor (support staff; the recording researcher); one (which we call ‘blank recipiency’) gave the interlocutor virtually no information at all on which to base a response. Only when the initiation was of a new phase in an interaction already under way (for example, the initiation of an alternative trajectory of a proposed physical move) was it likely to be successfully sustained. We show how interlocutors responded to initiations verbally, as if to neuro‐typical speakers – but inappropriately for people unable to comprehend, or to produce well‐fitted next turns. This mis‐reliance on ordinary speakers’ conversational practices was one factor that contributed to residents abandoning the interaction in almost all cases. We discuss the dilemma confronting care workers.

You walk into a room and see a person with profound intellectual and multiple disabilities – what do you think, what do you do?

A couple of months ago I had the honour of keynote presenting at the New Zealand ASID Conference. Here is a link to the slides and presentation.

“How do I need to be in order to be with you?” Building partnerships that enrich lives”.

Dr Sheridan Forster recently presented at the NZ 2018 ASID Conference. She draws on research, clinical practice, and the very real issue of sitting down with a person with PIMD and thinking “how do I need to be in order to be with you?”

Visit https://www.asid.asn.au/conferences/asid-nz-2018-conference to download her presentation.

Let’s think about understanding

I talk and think a lot about communication.

We have Speech Pathology Week, AAC Week, and other like things.

But I don’t know if we have a week dedicated to understanding.

A core part, too often neglected, of communication is the ability to understand the communication of others.

To be understood by another person, the partner needs to use the best modes (e.g., speech, sounds, facial expression, pictures) and the level of complexity for which the person can understand now. If partner’s do not use the best modes and level of complexity, then the communication is less likely to be understood.

We are often so focused on how a person can “communicate” to use – but too rarely consider how we can make ourselves understandable to the person.

Communication breaks down because we may not be understood.

Because of pain, I can not understand the same way as I used to. For me to understand television, I need subtitles – I can not understand speech on it’s own – it’s too quick for me to process.

I can not understand text the same way that I used too. I need to read when I am not fatigued; if I don’t, the words just don’t travel to my brain.

In conversation, I need a quiet environment, short turns, longer time to respond, and different expectations about what message I will be able to remember. I need important information to be written down (and preferably photographed because I will probably lose the paper).

I’ve created my own “how do I need to be in order to be with you – enhancing understanding?”

This week, can I celebrate Communication Comprehension week – celebrating communication that can be understood best!

Cross posting – event coming up in Victoria which may be of interest to those of you interested in people with severe and profound levels of cognitive impairment.

ASID Victoria – Workshop

Decision making support for people rarely heard

When:  Tuesday 19 June 2018

From:  9.00am to 3.00pm – Please BYO Lunch

This workshop is designed for those who support someone with a severe intellectual disability who communicates informally.  Within this practical and interactive workshop, Jo will introduce participants to a range of communication tools and approaches designed to support a person with severe intellectual disability to have their will and preferences realised through the decisions that are made within their lives.

Participants will gain valuable insights from presenters and fellow participants.

Cognitively speaking

I’ve been meaning to post for awhile, but have found it difficult to coordinate the time, energy, and words, which I guess is a great example for this post.

In May 2017 I had a fall. I broke both ankles and incurred some serious spine damage which was not diagnosed until I recovered from ankles and concern was raised why I wasn’t fully recovered. In response to this I had effects from my general anaesthetics and painkillers.

I had (have) some cognitive impairment. My cognitive impairment got me thinking about the adults with disabilities that I support and the underappreciation of the cognitive impairments that they might have.

Here were some of the impairments that I noted (please note, essentially I am noting my conscious incompetence and possibly missing features of unconscious incompetence):

– short term memory losses (did I say that already?)

– reduced auditory processing (I didn’t get hooked on SBS Nordic crime for my love of all things high Northern hemisphere, but because I could only understand written subtitles and not speech on TV)

– word finding problems (I had to call up my son’s name to remember my next procedure – the Curtiszone injection)

– inability to distinguish target vs field sounds (a hatred of being in a room in which more than one conversation was happening – and an overwhelming desire to scream “shut upppp!”)

– oversensitivity to noise (such that just closing my eyes helped me escape and find a happy space).

– a tendency to just answer yes to choice questions (“what do you want for diner?” “Yes”)

– problem solving requiring a systematic approach and longer time

– a desire to break down in tears in difficult situations (let’s not talk about trying to find black shoes for school concert and Curtis having to say in the middle of KMart “mummy, get off the floor”)

– a reduced tolerance for anything irritating (and a tendency for most things to be irritating)

– a rigidity of thought and need for clarity (and sorry, what does the term AAC really mean?)

– a tendency to be a much nicer person when enough pain killers were given to numb the soul.

So the last 6 months have given me a deeper understanding of these impairments.

I reflect that we often presume that the people we support have clear thinking minds, but what if they have any of these thing above or any other cognitive differences? What is the long term impact of a neurologically based intolerance? What is the impact on “social inclusion” if you feel overwhelmed by the sounds, sights, and movements? What judgements are made when a person can’t remember what you just told them? What happens if we presume that lack of response is due to lack of comprehension, when it might be being in too much pain to process or respond?

I am lucky; for me, these things should pass. But expect an (oh shit what was the word) excavation, excalation, getting biggerer of them in the next month as I enter surgery again next Monday. But do spare a thought for people that you know who have cognitive differences…

Ps. Post the bloody word to me if you know what it is

The Procter Sisters – and perhaps the most important video about people with PIMD that I have ever seen

I posted this on my personal facebook today and feel that it is fitting to post the same here…

Have you got 20 minutes today for me – well not for me, but for something that is at my core. Can you watch this youtube – it captures what has driven me for the last 22 years (probably longer actually) – true presence and connection with people who do not use and may not understand speech. Introducing Alison and Suez Proctor – thank you for putting into words and actions all that drives me each day – where human value is not determined by ones capacity to use words or symbols. https://youtu.be/NKzaUuixIQ8