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Research Autism Lorna Wing Seminar Thursday, 24th November 2011

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Page 1: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

Research Autism Lorna Wing Seminar Thursday, 24th November 2011

Page 2: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

Does hand held technology improve independence? Helping young people with Asperger syndrome and high functioning autism navigate life’s highways. The ‘HANDS ‘project. An evaluation of multi site EU research collaboration

Joseph Mintz London South Bank Unversity, London

Miklos Gyori ELTE University & Autism Foundation, Budapest

Page 3: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

Acknowledgements

> HANDS project has been supported by a grant from the European Commission, within its 7th Framework Programme (Accessible and inclusive ICT; ICT-2007.7.2), contract nr. 224216. Authors are especially grateful for pupils’ and their families’ participation in the project.

Page 4: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

Part I. HANDS: the project, the system, and its quantitative efficiency testing.

Miklos Gyori ELTE University, Budapest, Hungary

[email protected]

Page 5: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

the HANDS project

Page 6: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

the HANDS project

Helping Autism-diagnosed teenagers Navigate and Develop Socially

June 2008 – October 2011

7th Frame Programme of the European Commission

Accessible and inclusive ICT (ICT-2007.7.2)

10 partners from 6 countries

Page 7: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

Aalborg, DK London,

UK

Stockholm, SWE

Oslo, NOR

Cluj, RO

Budapest, HU

Page 8: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

Aalborg,

DK London,

UK

Stockholm,

SWE

Oslo,

NOR

Cluj,

RO Budapest,

HU =

=

=

=

Autism Foundation School

+

ELTE University

‘Egebakken’ School

+

Aalborg University

‘Helen Allison’ School

+

London South Bank University

‘Svedenskolan’ School

Page 9: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

the HANDS project: aims

a mobile-ICT-based support system for HF teenagers with ASD

> specific aims > enhance social integration & participation

> daily life skills, social behaviours & communication

> via supporting well-established intervention approaches

> further potential benefits > on efficiency of intervention

> on efficiency of human resources

> novel ways of data collecting/research

Page 10: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

the HANDS system

Page 11: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

the HANDS system

two-component software system

mobile component – for the client can be brought into focus situations of intervention

individualised contents

multimedia

easy-to-handle

web-based component – for the professional creating & managing contents ...even from away

supervising mobile activity ...even from away

sharing knowledge

mobile web remote synchronisation

Page 12: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

> daily routines

> institutional routines

> social situations

> transportation

> free time

> learning novel skills

> etc.

Page 13: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework
Page 14: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

an example

> high functioning boy (12) with ASD > diabetes > swimming classes are vital but hard to manage for him

Page 15: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

quantitative efficiency testing of the HANDS system

key members of team: Ildikó Kanizsai-Nagy (Autism Foundation)

Krisztina Stefanik (Autism Foundation & ELTE Univ.)

Zsombor Várnagy (ELTE University)

Page 16: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

developing & testing HANDS

> 2-phase iterative development process >> 2 prototypes

> 3 streams of scientific expertise & research

> challenges and difficulties about development

> quickly evolving technological context

> efficient communication across disciplines

> etc.

> challenges and difficulties about testing & research

> balance between development and research

> balance between quantitative and qualitative methods

> balance between involved research streams

> cross-cultural, cross-institutional and individual differences

Page 17: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

overall scheme of testing HANDS Prototype 2

> ‘quasi Randomised Controlled Trial’ > test group: HANDS-assisted educational support

> matched control group: ‘treatment as usual’

> pre-test / post-test & test / control comparisons

> limitations > not totally random assignment

> no blind conditions

> etc.

> active testing > from 15 January 2011 till 15 April 2011

> at all the 4 test-schools

Page 18: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

sample

> 4 countries, 6 schools, total N=49 (57) teenagers with ASD

> male/female = 45/4

> age: m= 14.38 years; SD=1.7; range 10,68 – 17,72

> IQ: m= 85.37; SD=15.93; range 53 – 118

> diagnosis: clinical, confirmed by ADI-R and ADOS

> educational context:

autism-specific school or class with an evidence-based approach on a daily basis

Page 19: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework
Page 20: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

HANDS

PROTOTYPE 2

testing + evaluation

Psychology

ELTE Univ. + Autism Found.

testing + evaluation

educational research

LSBU

testing + evaluation

human-computer interaction

Aalborg University

qualitative methods

qualitative methods

quantitative methods

Page 21: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

pre-assessment >> ADI, ADOS, IQ

usage >> ‘electronic footprints’ / log data

testing + evaluation

psychology

quantitative methods

adaptive visual design >> eye-tracking

specific effects >> experimental task analysis

skill-level effects >> psychometric testing

Page 22: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

adaptive visual design >> eye-tracking

> often atypical attentional processes in autism

> eye-tracking/gaze-tracking: standard technique

> method used here: ‘interactive-dynamic’ (developed by Gyori & Várnagy, 2010, 2011)

> main finding: HANDS mobile is well-designed

Page 23: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

specific effects >> experimental task analysis / ExTA

> novel research tool developed by Krisztina Stefanik et al. (2010, 2011)

> adapted from Task Analysis in TEACCH

> combines quantitative measurement with individual focus

> scales a target skill by the number & depth of necessary prompts

> main finding: HANDS-assisted intervention is more effective than traditional in a short run, in supporting specific adaptive behaviours

Making two slices of toast with butter and salt in school settings

0

0,5

1

1,5

2

2,5

3

3,5

4

4,5

0 5 10 15 20 25 30 35 40 45

Steps of the task

Dep

th o

f th

e p

rom

pts

Before

After

Page 24: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

skill-level effects >> psychometric testing

> Social Responsiveness Scale, SRS, by Constantino & Gruber, 2005 > 65-item questionnaire, 5 subscales, standardised

> HANDS Follow-up Questionnaire, by Gyori, Stefanik, Kanizsai-Nagy > 55-item questionnaire

> both questionnaires > parent/caregiver & teacher versions > administered pre & post test

> statistical analysis > test/control, before/after comparisons

> key findings > ‘noisy’ results > weak consistency between parents’ & teachers’ ratings > lack of any sample-level effect

Page 25: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

skill-level effects >> psychometric testing

usage >> ‘electronic footprints’ / log data

> Data from SRS and HFQ questionnaires as above

+ > Usage data recorded automatically by the HANDS system / ‘electronic footprints’

> statistical analysis

> correlations between usage frequency and effects

> key findings > huge differences in amount/frequency of usage > positive correlations between usage and development in test period > cause effect relationship?

Page 26: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

• HANDS has adaptive, ‘autism-friendly’ mobile user surface.

• HANDS shows short-term efficiency of support in specific tasks.

• HANDS has no robust, general and specific long-term effect.

• HANDS seems to have positive and long-term effects in a part of users.

adaptive visual design >> eye-tracking

specific effects >> experimental task analysis

skill-level effects >> psychometric testing

skill-level effects >> psychometric testing

usage >> ‘electronic footprints’ / log data

summary of quantitative results

Page 27: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

conclusions from quantitative studies

> on the HANDS support system

> seems effective on both short and longer term…

> in developing highly specific behaviours as well as wider skills

> though not for all teenager-teacher user pairs

> on conditions of success >> Part 2

> on quantitative research methodology

> in spite of challenges & difficulties…

> complex quantitative approach has proven productive and necessary

> has been productively complemented by quantitative methods >> Part 2

> special thanks to

> children and families…

> schools and teachers…

Page 28: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

Part II. the ‘educational research’ stream and qualitative studies on the HANDS system

Joseph Mintz London South Bank University

[email protected]

Page 29: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

Education: Research Questions Applicability of the HANDS tool to the learning environment

> how HANDS fits in with existing practices of teaching and learning

> what impact it has on such practices

> effects in developing social skills, self management skills and social integration

> Identification of key factors influencing engagement and use

Page 30: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

testing + evaluation

education

qualitative methods

Teacher interviews

(mainly HA, but also EGE, SVE and AF)

Class observations

(mainly HA, but also EGE, SVE and AF)

questionnaires (AF, EGE, SVE)

Parent and Child Interviews (HA only)

Page 31: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

methods

> interviews

> semi-structured, pre-defined interview guide drawn from research questions > pre-test, in test and post-test period interviewing For Prototype 1: 7 teachers, 10 support staff, 8 parents, 9 children For Prototype 2: 9 teachers, 23 support staff, 6 parents, 10 children

> questionnaires

> 39-item semi-structured questionnaire, matched to interview guide questions For Prototype 1: 14 questionnaires by teachers For Prototype 2: 16 questionnaires by teachers

> observations

> classroom based, matched to teacher interviews. > triangulation with interviews.

Page 32: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

The Implementation Experience

Technology can be hard to work with

Software bugs – a mismatch in understanding about what “software testing” means

Significant improvements in technology stability between Prototype 1 and Prototype 2

Page 33: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

The Implementation Experience

Technology can be hard to work with

Connectivity issues

Structural issues – can we get the permissions we need?

Battery Issues, Charging Issues, Losing the Phone, Throwing the Phone Issues

Teacher attitude and ability with ICT

Page 34: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

The Implementation Experience

But it can be transformational as well

Page 35: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

The Implementation Experience

Keeping up with the curve is hard

Windows Dynamic Mobile, iPhone, Android, the Smartphone Revolution

Page 36: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

The Implementation Experience

Teenagers and Mobile Devices – what did we see for ASD?

Independence, Adolescence, Group Identity, Mobile Loyalty – but more work is needed on this

Jealousy, Bullying, Fear of Theft/Attack, Inappropriate Behaviour – text bullying – what did we see?

Page 37: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

results / 1

> Developing children’s social and life skills

> a mixture of successful and unsuccessful interventions

> to aid a diverse range of skills

> benefits and detriments of both HANDS software & general phone functions cited

Page 38: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

It was difficult to arrange use of the device outside the classroom, partly on account of security issues, partly because of the software’s unreliability. (It is difficult to prepare in two ways for a possible problem. Eg., if behavioral aspects are only on the machine and it crashes, then the written form must absolutely be to hand.) These problems cause much less concern outside the classroom, since the structured setting is given there. [AF Teacher Questionnaire].

Page 39: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

…..modification of the timetable was equally difficult, because the device must be connected to the computer for updates. [AF, 15156 Teacher Questionnaire]

Page 40: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

Interviewer: Do you think he saw it as credible? Is it more than just playing with it, or is he responding to the interventions and doing what they tell him? Parent: Yeah, he definitely would, without a doubt, if he was out on his own, he would use it. if he got into a problem it would give him a great deal of confidence and it would focus him as opposed to him feeling the panic that I think he would feel if he did find himself on his own situation.

[Parent Interview, HA]

Page 41: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

Lucy: …we had parents evening, and he actually said that he wanted all his tasks put on the HANDS phone like that, so he didn’t have us nagging at him…. I went right okay, that means every teacher’s got to tell me what every task is in every lesson for me to put on there, but I have said to them that there are things that he does regularly during the week, so he goes to an offsite college on a Friday. He knows he has to have early lunch, come round to the department, get changed, be ready for when the minibus from the college pick him up and that. I said right we can put that on there. Don’t then tell him, nag him as he says… Just say to him check your HANDS phone, you know what’s expected, and just leave him to do it, and maybe that’s a way around it. Because Adam doesn’t like being told what to do [HA Teacher Interview]

Page 42: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

results/2

Some key factors affecting engagement and use

User Device Attachment

Fogg (Fogg, 2003; Fogg and Eckles, 2007) proposes that the effectiveness of

specific behavioural messages delivered via mobile devices is enhanced

when there are ongoing repeated positive interactions with a range of

cognitive and social functions on the device.

Observed in 18 cases across PT1 and PT2

Important to note that not seen in all cases

Page 43: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

results/2

Some key factors affecting engagement and use

Source Credibility and a focus on the home

Interviews and classroom observation showed that children can be positively

disposed to receiving mobile persuasive interventions from their teacher,

instantiated as a message from their teacher in video, image or text format.

The present study provides evidence to support the exploitation of teacher

credibility in the domain of life and social skills functioning. This very much part

of the school curriculum for young people with ASD, yet in many instances the

context for practising and developing social skills is as much in the home and

in out of school contexts as within the classroom itself.

Observed in 16 cases across PT1 and PT2.

Important to note that not seen in all cases

Page 44: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

results/2

Some key factors affecting engagement and use There was some evidence from Prototype 1 that instances of effective use of HANDS

by children were predicated on the individual child recognising that an issue existed

with a particular behaviour and having some level of motivation to engage with

behaviour change.

The Prototype 2 data provides further and stronger evidence to support this

recommendation.

All teachers in the UK school asserted in interviews that in their perception, student

awareness of an issue or difficulty and associated motivation to achieve a specified

behaviour change was an important factor mediating the level of engagement with

HANDS and likelihood of successful response to a particular behavioural intervention

instantiated on HANDS.

In 4 out of 10 teacher-child cases at the UK school, teachers indicated that their

student had difficulties with awareness of specific difficulties for which interventions

were introduced on HANDS, and that this had in their perception been a contributory

factor to lack of response to specific interventions, as shown in the following vignette

involving John.

Page 45: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

HANDS could potentially be used to encourage her student, John, a 15 year old male student with a diagnosis of autism, to reflect on his problematic behaviour with another student in the same class.

John and the other student commonly tease and aggravate each other during lessons and break times.

Teacher programmed a series of intervention prompts onto HANDS which asked John “has student X [the other student] had a good day?” which John could select to either answer yes or no, and then a further question “if you said no, was it because you wound him up?” which again John could answer either yes or no to.

Intervention proved problematic, as John did not think that there was anything wrong with the way he socialised with student X or that his behaviour had any influence in the negative outcomes

Page 46: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

After this intervention was implemented and John had been using it for a period, John requested that teacher change or stop the intervention because he did not like it, and instead the teacher rewrote the intervention, so that the reminder prompted John with “keep your joking with student X to break times”, a more directed intervention which relied more on leveraging teacher authority, and less on John’s internal awareness of the issue and motivation to change his behaviour.

The teacher’s overall assessment of the intervention was that as John was not at all motivated to change the way he socialised and communicated with student X, the intervention failed to be effective.

Page 47: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

results/2

Some key factors affecting engagement and use

Preference for Mobile Device Based Interventions

Our evaluation of Prototype 1 and Prototype 2 indicated that perceived teacher

source credibility is a significant factor mediating engagement.

We also had some weak indications from interview responses for Prototype 1 that

some children may actually prefer to receive persuasive messages from HANDS

than from their teacher.

Accordingly we included specific questions on this area in our interview guide for

Prototype 2 child interviews at the UK school.

Six out of ten of the children commented on whether they preferred support /

prompts from a person or from the HANDS device.

Two students preferred prompts from a person, including parents, teachers and

support staff.

In contrast, the other four students at the UK school felt that they would rather

receive persuasive messages from the HANDS phone than an adult.

Page 48: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

results/2

Some key factors affecting engagement and use

Preference for Mobile Device Based Interventions

A potential rationale for this preference is that many children with ASD have

cognitive impairments in processing speeds (Luna et al., 2007).

For example, in one of the cases, the child was using HANDS to support him in

the life skills task of making toast independently. In a classroom observation he is

observed completing the task successfully using HANDS as a support and voices

that he prefers to receive the instructions from HANDS as opposed to from his

teacher. The teacher suggests that this may be because he “can do it in his own

time”, that is that he has longer to process the individual intervention messages

from the mobile device and can control the rate at which the messages are

supplied. In the follow up interview the teacher comments:

Page 49: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

I think they felt more relaxed because it was up to them to move to the next step, whereas you present someone with this long list of instructions written down. Someone with autism that you know, it works their minds when they see what they’ve got to do, because it does look a lot of set when it’s written down. Whereas on the HANDS phones they move to the next step when they felt confident enough to do so, and they worked through it didn’t they?[HA Teacher Interview]

Page 50: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

conclusions & perspectives

Page 51: Research Autism Lorna Wing Seminar Thursday, 24th November ... · Acknowledgements > HANDS project has been supported by a grant from the European Commission, within its 7th Framework

Conclusions & perspectives

a rare/unique attempt to develop & test such an intervention toolset systematically

Many apps out there – very few (if any) with systematic efficacy testing

> though some clear shortcomings revealed

appears as an effective and promising toolkit for some children with ASD

Importance of technical stability and teacher and school technical ability

> many aspects seem transferable to other target populations

> a basis to incorporate other aspect of supportive technology

Next Steps?

> Further integration of qualitative and quantitative data

Further theoretical informed experimental development based on HANDS experiences to develop a screening instrument that would identify which children with ASD are most likely to benefit from the use of mobile devices to develop social and life skills

Larger scale testing of mobile apps for social and life skills development based on such a screening instrument