Stories at the Dentist

Details of a current research project relating to dental healthcare is  being carried out by the University of Dundee AAC Research Group. The “Stories at the Dentist” project isn’t specifically about autism but would seem to be relevant. Dental treatment for people on the autistic spectrum can be problematic due to the high degree of communication needed between the dentist and the patient e.g. seeking consent from patients during consultations. For those with sensory issues touch/sounds/taste/sight lights etc.  involved in treatment can be overwhelming and distressing.

“The main objective is to create an effective and efficient means of generating personalised social stories for individual patients within the dental context. This study aims to develop a computer based communication system to support people with intellectual disabilities to understand dental procedures with the aim of reducing anxiety for both patients and clinicians, and to enable patients to be more involved in the decision making process.”

Visit the Stories at the Dentist project website for full details of this research and to see the prototype of an app used to support the work of this project. They are experimenting with social stories to explain processes involved in treatment and e.g. pictures of dental practice staff to introduce the environment.

Autism research journals and papers

Research Journals

Some journals with an electronic presence.
Tip: Some journals have “Open Access” articles for papers that don’t require a subscription to read, look for icons of unlocked padlocks.

Papers

Some papers involving hand held devices

Commuting Under Pressure

Navigating the sensory landscapes of work based travel

“…David (who has a diagnosis of Asperger Syndrome) retraces his journey from Southampton to Leeds (via London) in order to illustrate the use of mobile technology to assist with travel…”


David makes a very good job of illustrating the kind of sensory overload issues that can be a risk for those using public transport. Clear signage in public areas can be helpful. He makes good use of a smartphone to

  • Check travel schedules and see whether there are any unscheduled changes to timetables.
  • Play music and use over-the-ear headphones with his device to block out the sound of the underground and construction work at a train station and other loud or unwanted noise.
  • Navigation – uses mapping facilities and the GPS of the phone to find out where he is and which direction he’s facing.

He says he’s found using this kind of technology good for reducing the stress associated with travel and helping avert potential panic attacks.

Pros and cons of autism alert cards and travel cards

Meeting Date: Monday 16 September 2013
Location: Glasgow office of the Adult Autism Team

The Adult Autism Team kindly arranged for me to meet a woman with extensive experience of working in peer support in autism.

Even in the short time since starting this project what has become painfully evident is the current relative lack of research/support techniques for adults on the autistic spectrum, most projects focus on children.

“Do we disappear when we hit 18?”

But we do get some incredibly useful insights via anecdotal reports.

Autism Alert Cards

Here’s an example of the Strathclyde Autism Alert Card.
Autism Alert Card- FrontAutism Alert Card- Back

 Pros

  • They provide a certain amount of gravitas as they are ‘official’ cards only issued to those with a formal ASD diagnosis. This helps with things like applying for benefits or dealing with officialdom
  • Convenient size, printed on robust plastic similar to credit cards, easily carried by men or women
  • Although the cards were originally intended to be used in exceptional circumstances some people have found them useful in everyday life  e.g. present them to shop assistants, on public transport etc., people usually find the person will then ask them if there’s anything else they can do to help.

Cons

  • Some have found that the stamped police logo on the front of the card is problematic – on occasion presenting it the other person mistakenly thought the autistic person was an official from the police. Because of this some people have opted to use other plainer cards but those carry no official weight
  • Some cardholders haven’t understood that it’s not good enough to simply have the card on them…they need to remember to try and present the card to others.
  • There’s space on the back for a personal contact. Some people have nobody they can think of to put in that box, they’ve thought that the card wont be useful unless that was filled in so haven’t used the card.
  • No space for personal details

All these kind of details are very useful to me as I look for ways of supplementing these kind of cards. If you know of more pros or cons of these existing cards please leave a reply in the comments or contact me.

Travel cards – Glasgow buses

Some people qualify for free travel due to their disability. In Glasgow there’s one issue on buses where the recent introduction of technology is currently having a negative effect on some autistic people.
Free bus travel for people aged 60+ or those with a disability

In the past what would happen is you would just hold the card up to the driver and board the vehicle. Now that there’s electronic versions of these cards the user has to

  1. Physically place their card on top of a card reader device
  2. Say to the driver their destination stop
  3. Board the vehicle

Some autistic people find bus travel difficult in general,

  • finding the right stop
  • waiting 
  • getting into queues and especially in Glasgow the expected social chit chat
  • getting on the right number of bus

So for people with these kind of difficulties they can already be pretty stressed even before they step onto the bus. It’s “say to the driver their destination stop”  that is causing a problem. For those with difficulty with verbal communication they may be unable or too stressed and unwilling to speak which means they run into problems simply trying to board a bus successfully. Some have stopped even trying to travel this way which leads to mobility problems reaching appointments elsewhere.

What would be useful is a way for a person to present the destination to the driver without needing to speak, possible approaches may be

  • Showing text with the name of the desired destination
  • Using text-to-speech technology to verbalise the destination on behalf of the person.

With synthetic speech it’s important that the ‘voice’ shouldn’t lead to the person being ridiculed in public.

Gender is also important, most people would probably prefer that their synthetic voice was male or female as appropriate.

Ideally it would be good if any synthetic voice had a Scottish or local accent, some people who have already tried assistive devices refuse to use devices with American or English (e.g. London RP) accents as they don’t like the sound of the voice.

In some cases people may be able to prerecord audio of themselves or others pronouncing destinations so look for tools that can support this.

Post updated  19th September 2013, see the following How tos for examples of apps that might help with this.

 

Open University Unit -The autistic spectrum: From theory to practice

The Open University (OU) provides a wide range of courses and is a long-standing centre of expertise in distance and online learning in the UK. Many people already in employment use the OU to gain or supplement existing academic qualifications in subjects such as Social Work. They have provided a free unit:
The autistic spectrum: From theory to practice

Autism – research involving phones

This project was sparked by an observation by a clinician from the Autism Resource Centre. She explained that there is a real difficulty getting ASD people to remember to carry cards and/or documentation to be read and used in difficult situations. However she notices that most people will remember to carry a mobile phone with them. So are there ways of making useful information available on such devices so it will always be available in a time of need? Is there any research on this? As I document my search methods I’m always going to try starting with broad searches then refine them to be more specific.

Starting with the “Autism Data”  collection via The National Autistic Society Information Centre Library which would seem to be a good place to start for any research of specific relevance to autism. Let’s try the KISS principle – Keep It Simple Stupid. 

Simple search on ‘phone’ Yields 24 results, search seems to be on the metadata of their records. Brings up records with the phrase ‘phone call’ which is a set of records mostly relating to phone surveys of parents or using phones for charity fund-raising. Unfortunately there doesn’t appear to be a way for me to link to individual search results directly so from now I will refer to the record numbers

  • Record No: 27858
    “…As a younger child, he would pretend to talk on the phone…” This was in the context of language impairment. So even if an individual has a communication impairment the desire to communicate the way everyone else does can still be there. Is a phone an aspirational device for even young children, something they want to use?
  • Record No: 23901
    Author:De Leo G. et al
    Title:A smart-phone application and a companion website for the improvement of the communication skills of children with autism: clinical rationale, technical development and preliminary results
    Source:Journal of Medical Systems, 2011, Vol. 35(4), pp. 703-11
    This looks more promising, hmn how do I get a copy of the article “Journal of Medical Systems“??? Will document a “How to” using an Athens account
    If it has a “companion website” that sounds as if it will be easier to get hold of quickly. From a quick skim of their article they detail a system working on Windows Mobile phones and the technique seems remarkably similar to “Talking Mats” – using visual images for communication. So should bear in mind the importance of using techniques other than solely text (always a good principle for accessibility anyway) and can symbols be more effective for visual learners.

TO BE CONTINUED

Autism Data – The National Autistic Society Information Centre Library

Autism Data is the ideal research tool for anyone researching autism and Asperger syndrome. It is, as far as we are aware, the only database of published material on all aspects of autism, open for everyone to access on the web. It lists over 30,000 published research papers, books, articles, videos and other materials.”

Autistic spectrum – a rainbow of users

There’s a saying

“if you’ve met one person with autism…you’ve met one person with autism”.

Even in this project we always have to be aware that although we will be using broad labels like ‘autism’ our intention is always to provide uniquely personalised information about individual people. We want to collate people/places/things that are important to only that person. We can’t assume if something works well for one person that it will work for everyone. By the very nature of autism we have to expect varying degrees of ‘success’ or ‘failure’ for different methods but we will never be able to come up with just one approach/tool that addresses everyone’s needs.

Autistic Spectrum

One phrase we will be using a lot is autistic spectrum and the rather horrible but commonly used acronym ASD – Autism Spectrum Disorder. Just like in a rainbow there’s not just one or two colours/issues but a range.

By: Robert Nyman

But we need to start somewhere so let’s take a look at how this condition is currently defined (Beware, this changes over time so will only reflect current thinking).

According to the NHS, Autism and Asperger syndrome:

“…ASD can cause a wide range of symptoms, which are grouped into three categories:

  • problems and difficulties with social interaction – including lack of understanding and awareness of other people’s emotions and feelings
  • impaired language and communication skills – including delayed language development and an inability to start conversations or take part in them properly
  • unusual patterns of thought and physical behaviour – including making repetitive physical movements, such as hand tapping or twisting (the child develops set routines of behaviour and can get upset if the routines are broken)…”

When we are researching resources that would fall into any of the three categories we’ll try to tag them with ‘social’, ‘communication‘ or ‘patterns‘ as appropriate.

disco glitter ball
By: Ewan Topping

Also note the important word ‘grouped’, within each of these three broad categories there’s a vast range of examples. In Scotland, one of the common diagnostic tools used by health professionals is called ‘DISCO’, now before you start boogying on down, in practice this will materialise as the rather less funky title ‘Diagnostic Interview for Social and Communication Disorders‘. This involves working through a whole binder full of structured criteria. Diagnosis is time consuming as it usually also involves interviews with other family members if possible.

Peeters, T. and Gillberg, C.

‘People with autism come in as many shapes and sizes as ‘people with pneumonia’. They have different races, social circumstances, intellectual levels, personalities and associated disorders. They should not be expected to conform to a highly specific prototype or to benefit from exactly the same kind of intervention, treatment or training. First and foremost they are people. It so happens that they are affected by the same (or similar) disorder but this does not make them blueprints of each other.’

(1999) Autism: medical and educational aspects. London: Whurr