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

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

outline of talkwhat we know (and dont know) about autism

the michael young prize: what i wanted to tell the public most about autism

plans to engage user groups and policymakers in the research process

defining autismonset before 36 monthsverbal + nonverbal communicationreciprocal social interactionrestricted + 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 autismbrain systemscognitionbehaviourenvironmentgenes

unresolved questions: how does autism develop across the lifespan?

understanding autismbrain systemscognitionbehaviourenvironmentgenesdevelopment

aims of my 3-year follow-up studybut such studies in the autism field are rare

Chart1

8.22580645166.87096774195.70967741940.79339975880.79339975880.35843727570.35843727570.3686463130.368646313

4.38709677425.25806451614

social

comm.

repet. beh.

mean SCQ domain scores across time

mean SCQ scores

time 1time 2

social8.22580645160.79339975884.38709677420.6004969615

comm.6.87096774190.35843727575.25806451610.3988363233

repet. beh.5.70967741940.36864631340.3709911166

Total221.338431114914.48387096771.1433500746

mean SCQ scores

0000.79339975880.79339975880.35843727570.35843727570.3686463130.368646313

000

social

comm.

repet. beh.

mean SCQ domain scores across time

social score - individual

Time 1Time 2

31

147

117

135

94

14

102

137

50

146

55

139

32

20

30

20

106

80

115

107

72

86

32

1412

54

1110

81

137

128

10

137

social score - individual

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Mean scores for SCQ social domain - individual children

comm. scores - individual

Time 1Time 2

54

103

86

127

55

65

88

95

52

109

66

46

66

52

63

63

76

71

76

65

74

75

62

75

47

68

55

97

117

54

811

comm. scores - individual

0000000000000000000000000000000

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Mean scores for SCQ Communication domain - individual children

repet. scores - individual

Time 1Time 2

45

87

64

43

63

31

33

84

30

98

44

87

67

43

75

34

43

45

96

51

71

85

63

75

43

34

81

98

74

44

63

repet. scores - individual

0000000000000000000000000000000

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Mean scores for SCQ repetitive behaviours domain - individual children

total scores - individual

Time 1Time 2

1311

3418

2617

3016

2113

1210

2213

3217

142

3525

1616

2623

1516

125

189

117

2216

206

2919

2316

227

2516

167

2923

1315

2123

227

3324

3121

119

2822

total scores - individual

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mean total SCQ scores - individual children

fact 4: it is usually diagnosed around 3 years of age but sometimes much laternew finding 1: childrens autistic symptoms improved in ALL three areas

autism spectrumn = 37time 2time 1autism spectrum n = 30non-spectrum n = 7

internal (child) characteristics: language intellectual functioning level of symptoms at intake

external characteristics: early intervention schooling

fact 4: it is usually diagnosed around 3 years of age but sometimes much laternew 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 DurkinAlana MaleyMurray Maybery Kate NationCourtenay NorburyMarc StearsSimon Wallaceall the children and families who participated in these studies

*

**longitudinal studies: require that individual children are tracked over timeenables researchers to examine changes within individuals over time

but such studies in the autism field are rare

the few existing long-term follow-up studies show that: there are improvements over timeadult outcome (life adjustment) is highly variable

but in more recent decades there has been:broadening of diagnostic criteriaincreased opportunity for individuals with autism to benefit from education and autism-specific intervention services