Jacqui Shepherd presentation

1. Autism: the challenges and
opportunities
Manchester
Supporting Young People Through Times of
Transition
Dr. Jacqui Shepherd
1st June 2016
Lecturer in Education, University of Sussex

2. Outline
 The problem with transition(s)
 The research project
 Discussion of key themes:
- Academic and social progression
- Social interaction difficulties and supporting social
transition
- Time and managing time
- Independence and vulnerability

3. Transition and ASC
 Insistence on sameness (‘anxiously obsessive desire for the
maintenance of sameness’ Kanner, 1943, p245)
 Small transitions problematic
 Challenge of social interaction
 Imagining the future, new situations
 Need for routine, predictability
 Special school vs mainstream college
 Young people with autism typically ‘will have the
combination of fewer social links, be more emotionally
immature and less experienced in ‘knowing the ropes’ to
help them decide’ (Plimley & Bowen, 2006, p56).

4. Rationale
 Fewer than 1 in 4 young people with autism continue their
education beyond school (Ambitious About Autism, 2011)
 Transition and autism being problematic
 Inclusive education at college
 Range of courses but do they fit learners’ needs?
 Statements ceasing at 16
 Legislative changes: Children and Families Act 2014
 Only 15% of adults with autism in full-time paid employment (Knapp
et al., 2007)
 Personal and professional interests

5. Person centred planning
 ‘The needs of the individual child and young person should
sit at the heart of the assessment and planning process.
Planning should start with the individual and local authorities
must have regard to the views, wishes and feelings of the
child, child’s parent or young person, their aspirations, the
outcomes they wish to seek and the support they need to
achieve them.’ (SEND Code of Practice, 2014)
 ‘We need to devise ways of putting the perspectives of people with
autism ‘at the centre of the autism conversation’ (Ne’eman, 2011)
 There seems to be an assumption in the policy that as long as you
seek the opinion of the young person then good outcomes will
follow but this not necessarily true (Small et al. 2013)

7. The research project
 Young people at the centre of the research/lived experience
 Leavers from three special schools across three local authorities
 Pupils with autism in last year of special school 16-17 planning to go
on to colleges of Further Education
 Varying social and communication abilities; additional learning
difficulties
 Tracking transition to further education over 12 months – five different
FE colleges
 Six detailed case studies – breadth/depth balance (interviews with
young people, teachers, parents and tutors)
 How and why would they talk to me?
 Development of person-centred research methods – capability
approach

8. Collages, card sorts and
walking interviews

9. Beth

10. Jake card sorts
Looking forward to Worried about

11. Eric walking interview
LSA

12. Key themes
 Academic and social progression
 Social interaction difficulties and supporting social
transition
 Time and managing time
 Independence and vulnerability

13. Progression
 Social, academic and personal?
 Jake got 4 GCSEs at grade C and could have
progressed to a level 2 or 3 course but opted for
foundation. He hoped to go on to BTEC level 2 then
3 in his subsequent years at college
 Beth had 5 GCSEs, 3 of them As (Media, art,
Photography) as well as English and Maths at B and
C. She chose to go on to a level 3 BTEC in media

14. Jake and the academic compromise
we felt that going straight to mainstream from special would have
been too much [...] I think he'll probably be a bit bored by some of
the options um...but...I think it's a sort of necessary process really.
(Alison, Jake’s mother,)
On whether the work was easier or more difficult at college:
Well I would say it's easier because it's lower quality
but...because last year I was doing GCSEs, this year it's like
entry level...but I am doing functional skills 2 in English which is
equivalent to a C but I would say it's slightly easier...
(Jake)
College tutor: he's probably the highest ability student I have ever
had

15. Jake’s experience
• Had a successful year on the foundation level
course at college
• Went on to level 3 BTEC for two years
• Applying for apprenticeships
‘I’m at college in my final year and I managed to
pass my GCSE English at grade C and I got a
Distinction* in my IT…I hope in July 2016 I will be
able to start a level 3 IT apprenticeship for one year
and then become a fully qualified Junior IT
technician’ (Jake, email, January 2016)

16. Beth and the support compromise
They didn't actually want her to do level 3, they were
trying to dissuade her and saying do level 2 cos then
you'll get more support and der dee der…and she said to
me that when she was shown around, the kids that were
doing the level 2, she would already have done that work
and I just thought, ..We kind of fought that one and I said
no, she wants to do level 3 and now I'm sort of thinking, if
you start, I'm going to start quoting laws, I’m going to dig
out, you know, disability laws and stuff and...um....and as
I reminded them, academically she'd got the grades…
(Debbie, Beth’s mother)

17. Beth’s experience
‘It's mostly the social and friends side of things which I'm finding
really hard. I keep trying to talk to people but everyone's always in
groups and I often feel that they're leaving me out and then I get
really worried that I've said something wrong. I feel a bit sad that
there's no one like at Meadowlands in my class but I've met a few
people on other courses who are really nice so I guess I'm just a
bit unlucky with who's in my class’ (Beth email, 4 weeks in to
college)
‘things are not going at all well for Beth at college and she’s really
struggling poor love. She’s asked me if you’d mind if we didn’t
carry on as she’s finding everything so stressful’ (Mum’s text
during second term at college)

18. Supporting academic progression
• What needs to be in place in order for Jake and Beth to make
academic progress and to ensure successful transition?
• Focus on ability and potential to determine academic offer
• Identify support needs according to the individual student
• What constitutes learning support?

19. Social interaction
• As impairment in autism? Autism
as ‘an extreme case of diminished social
motivation’ (Chevallier, 2013)?
• Experiences of bullying
• But all the young people were interested in friends
and the social world
• Social media provides new opportunities - and
new challenges for social interaction
• That the social affects everything
• Virtually all the difficulties at college arose from
social communication difficulties
• How do we prepare young people
with autism for the social transition?

20. Beth and social interaction
I'd probably like to begin with I'd like to share a flat with friends or something, I
wouldn't like to be on my own as I'd feel quite vulnerable and scared and alone
whereas...yeah...with friends it would be much more company and fun
(Beth, Time 1)
I did actually find mainstream quite hard and I ...they...and my mum like moved
schools for me because I kept getting bullied and that and teachers didn't really
understand so it's was before I was diagnosed and then I went into a middle school
which was smaller and I made a few friends there but unfortunately ...um...I kind of
like epilepsy kind of started up and I was off school for a while and then it was the
end of Year 7 and I really didn't feel like I was able to cope because they wanted
me to go to Charlton Rise school but that's a really really big school and I really
didn't feel able to… (Beth, Time 1)

21. Social motivation
• Jake and interest in social media, skype motivations
I use Skype, Facebook and I use Twitter um...I use Steam which is this thing
where you can play games and chat to people at the same time but...I use...well
I use emails occasionally (Jake, Time 1)
• Eric and social interest – online difficulties
Facebook is the worst thing ever invented, it's very bad, people don't know how
dangerous that is, it is terrible, and I think if you've got something wrong with
you, you really shouldn't go on it because you're so vulnerable and you might
say things in anger that really wouldn't come out of your mouth at any other time
(Eric’s mother, Time 1)
Well I think it's what he's saying on there more than anything and he's very
obsessive with girls. He really wants a girlfriend and it can get very serious what
he says on there sort of thing, what he'd like to do with them so erm, it is
disgusting so he's banned for life (Eric’s mother, Time 1)

22. Social Motivation
• Frankie and social media
JS: So do you go on Facebook quite a bit?
Frankie: Yeah, I just go there just to check if people, like if I've got any like
messages or if people like or if I'm chatting with someone or that sort of
thing (Frankie, Time 1)
• Ellis in the coffee bar at college
‘he's coming in and he's adopting the persona of a man at leisure and
sitting down and having a cappuccino on the first floor balcony and sitting
there as if he's reading the Times, he's actually making the most of the
environment as he wants to use it, um but he's making up excuses not to
do things’ (Ellis’s tutor)
• David and social interaction on line

23. Supporting social transition
• Student links between schools and colleges
• Dialogue between autistic and non-autistic students
to determine
• Autism awareness in whole college community
• Preparation for college social life and opportunities
• Potential of social media

24. Time and Managing Time
Time and Managing Time

25. Summer holidays
‘I think a degree of anxiety comes into play if there's nothing happening’
(Jake’s mother, Time 1)
David and the summer holidays, ‘I would definitely say that David has
been quite withdrawn over the summer break and he has not wanted to
take part in any activities…to be honest I am a little worried that he might
also be a bit depressed’ (David’s mother, email)
Frankie and Dad’s surprise at length of summer hols
‘Yes, they said it's full time and then I said, great, five days a week and
they said, yep, that's three days a week, eeergh, that's not full time that's
part time.’ (Frankies’ father, Time 1)
For three months, it just went on and on and on and so that was bonkers
and the other thing was I didn't appreciate the fact that he would be out of
school after he did his exams so that was a surprise to me so he was
actually sitting on the sofa for quite a long time doing bugger all
(Frankie’s father, Time 2)

26. Managing part time timetables
College tutor knows that days off are not productive
JS: And what do you think they do on their days off?
Tutor: I know what they do, they all sit around and they play computer games and
they don't do anything
What Frankie does
JS: So what do you do in the day if you're not going to college?
Frankie: I either go out or stay in and play games or chat with friends on Facebook
JS: And that's OK is it? Is it alright on those two days?
Frankie: Yeah, sometimes but sometimes I don't have anything to do
JS: Would you rather be at college every day?
Frankie: Maybe (Frankie, Time 2)
David handed his coursework in on time so had further time off,
David’s mother: ‘At the moment he's not doing very much time at all at the college,
apparently he finished the coursework and that's it so until the other side of half term
now he's not going in any more
JS: So he does all day Tuesday and Monday afternoon and that's it
David’s mother: And that's it

27. Supporting time management
• Better use of transition time during the summer holidays
• Explicit guidance on the use of non-timetabled time at
college
• Experience of non-timetabled time at school
• Peer support
• Planning

28. Independence and vulnerability
• Bullying
• From protected world of special school to
mainstream world
• Communication challenges
• Travel training
• Limited integration in college
• Lack of peer group
But 17 years old with aspirations and
abilities…

29. Eric: Independence/vulnerability
 Reliance on support assistant
 College within one corridor
 Eric is not allowed to go anywhere unsupervised
 How to reduce/remove support?
 Problematising independence vs autonomy? (Arnold,
2014, Heumann, 2011) Interdependence, control?

30. ‘As a little boy people used to beat him up and pick on him, it don't
matter where you took him because Eric looked vulnerable and an
easy target.’ (Mum, Time 1)
‘he's so behind, he's very socially and mentally behind in his age and
that so it's going to be very, very hard, it's like sending a 12 year old
to college, you know, Eric is very immature.’ (Mum, Time 1)
‘I'm hoping he will be independent by the time he leaves, that he'll
have a bit of a life, that he have a life cos at the moment I don't think
it's much of a life what he's got, it's not like when we was younger,
load of mates around, and he's very mollycoddled at home and
suffocated and he is, you can't deny it, cos he ain't safe but I'd like
him to have friends’ (Mum, Time 2)
‘I'm pleased Eric is doing his travel training, I said he needs his
independence but I don't want it rushed, he's only had a few sessions
and they think he can go by himself now,’ (Mum, Time 2)
Eric’s Vulnerability?

31. Transport: a matter of life and
death
He [the college travel trainer] was very aggressive to me, the man,
he shouted at me. He said parents like you don't want their
children to grow up and have independence don't you want him to
have a girlfriend and have a job, don't you want him to have a
normal life? I said, do you want my son in a coffin? I said his death
will be on your shoulders, I said I'm his mother, it's my
responsibility is to keep him safe[......]that man knows more about
Eric than I do and all he's seen of Eric is half an hour through the
day but he knows more about Eric than I do ...I think it is very dis-
respectful and I'm not having it and Eric is passing and I'm still not
happy about that and I said to him, I am not happy, well he's
passing, he will have to make his own way to college. I spoke to
someone about it and said I'm not happy about this, Eric is still
very vulnerable, he is very vulnerable.
(Carol, Eric’s mother, Time 2)

32. Interdependence
‘It is perhaps self-delusional to say that I am as dependent on her as
she is on me, but perhaps not. Others could take care of her and
even love her – in fact I must think that she will continue to thrive with
or without me. But without her, I would wither.’ (Kittay, 2000)
Absence of broader social networks, ‘their reliance on carers reveals
that interdependence is at the heart of their engagement with the
world’ (Small et al., 2013, p297)
Promote independence, where it is possible and mutual support
where it is not (Watson et al., 2004)
‘To expect them to be able to cope without support from their families
is to deprive them of a vital back-up system, as well as college staff
losing a valuable source of information’. (Howlin et al., 2004, p177)

33. Supporting
Interdependence
 Acknowledge that restricted peer groups, learning difficulties
sometimes mean more reliance on parents (and others) – involve
parents in transition planning but also in first terms at college
 Develop independence where possible and timely and support
where it is not
 David could have helped others with Maths, ‘like the thing I want to do
is Maths which I can't do and then I've got English which I struggle to do and I've
still got to do’ (David, Time 2)
 Beth and animation workshops ‘I really like animation because you set
yourself a goal and then you can just kind of get really obsessive with it and just
keep on going’ (Beth, Time 1)
 Holistic approach to transition involving peer groups and buddy
systems

34. Conclusions
 Work towards a thriving interdependency
 ‘Double-empathy problem’ ‘one could say that many autistic
people have indeed gained a greater level of insight into
non-AS society, and more than vice versa’ (Milton, 2012)
 Support for social transition
 Peer support and buddying
 Working in partnership for holistic transition
 Person-centred planning
 Working towards full inclusion

35. Selected references
Ambitious About Autism (2011) Finished at School. Where next for young people with autism? London: Pears National
Centre for Autism Education.
Chevallier, C., Kohls, G., Troiani, V., Brodkin, E. S. and Schultz, R. T. (2012) The social motivation theory of autism Trends
in cognitive sciences Elsevier Ltd, 16(4) pp. 231–9
DfE and DoH (2014) Special educational needs and disability code of practice: 0-25 years.
Howlin, P., Goode, S., Hutton, J. and Rutter, M. (2004) ‘Adult outcome for children with autism.’ Journal of child psychology
and psychiatry and allied disciplines, 45 pp. 212–29.
Kanner, L. (1943) ‘Autistic disturbances of affective contact.’ Nervous Child, 2 pp. 217–250.
Kittay, E. F. (2000) ‘When Caring Is Just and Justice Is Caring: Justice and Mental Retardation.’ Public Culture, 13(3) pp.
557–579
Milton, D. E. M. (2012) ‘On the ontological status of autism: the ‘double empathy problem.’’ Disability & Society, 27(6) pp.
883–887.
Plimley, L. and Bowen, M. (2006) Autistic Spectrum Disorders in the Secondary School. London: Sage.
Small, N., Raghavan, R. and Pawson, N. (2013) An ecological approach to seeking and utilising the views of young people
with intellectual disabilities in transition planning Journal of intellectual disabilities
Watson, N., McKie, L., Hughes, B., Hopkins, D. and Gregory, S. (2004) (Inter)Dependence, Needs and Care: The Potential
for Disability and Feminist Theorists to Develop an Emancipatory Model Sociology , 38 (2 ) pp. 331–350.

36. Contact
Jacqui Shepherd
School of Education and Social Work
University of Sussex
j.shepherd@sussex.ac.uk
Twitter: @jacshepautism
‘Interrupted Interviews’: Listening to young people with autism in
transition
http://exchanges.warwick.ac.uk/index.php/exchanges/article/view/6
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