mapping the changing face of autism liz pellicano department of experimental psychology, university of bristol

outline of talk 1.what we know (and don’t know) about autism 2.the michael young prize: what i wanted to tell the public most about autism 3.plans to engage user groups and policymakers in the research process

defining autism onset before 36 months verbal + nonverbal communication reciprocal social interaction restricted + repetitive behaviours

fact 1: autism is a hidden condition

fact 2: there is an autism spectrum

fact 3: autism is not rare. 1 in every 100 UK individuals lie on the autism spectrum

fact 4: it is usually diagnosed around 3 years of age but sometimes much later

fact 5: individuals with autism will require lifelong support of varying degree

unresolved questions: what causes autism?

understanding autism brain systems cognition behaviour environment genes

unresolved questions: how does autism develop across the lifespan?

understanding autism brain systems cognition behaviour environment genes development

methodological challenges: the difficulties of developmental (longitudinal) research

aims of my 3-year follow-up study but such studies in the autism field are rare … 1. to examine changes in symptoms 2. to examine changes in diagnosis 3. to determine early predictors of later outcome

aim 1. to examine changes in symptoms

fact 4: it is usually diagnosed around 3 years of age but sometimes much later new finding 1: children’s autistic symptoms improved in ALL three areas

autism spectrum n = 37 time 2time 1 autism spectrum n = 30 aim 2. to examine changes in diagnosis non-spectrum n = 7

fact 4: it is usually diagnosed around 3 years of age but sometimes much later new finding 2: some children’s symptoms improved enormously, to the extent that 19% of children did not meet autism spectrum criteria at follow-up

internal (child) characteristics:  language  intellectual functioning  level of symptoms at intake external characteristics: early intervention schooling aim 3. to determine early predictors of later outcome

fact 4: it is usually diagnosed around 3 years of age but sometimes much later new finding 3: early external rather than internal factors predicted positive outcomes

the next step … – a large-scale longitudinal study – but developing this research programme demands a deeper mission: to involve autistic people and their parents and carers in shaping the research process in collaboration with naomi newman

many thanks to... Kevin Durkin Alana Maley Murray Maybery Kate Nation Courtenay Norbury Marc Stears Simon Wallace all the children and families who participated in these studies