neurodevelopmental conditions in adulthood

Question 1

neurodevelopmental conditions in adulthood - how long do they last and impacts

Answer 1

• neurodevelopmental conditions are life long
• certain neurodevelopmental conditions can lead to specific physical characteristics
• but many individuals are expected to have normal life expectancies

Question 2

william’s syndrome life expectancy

Answer 2

Life expectancy is not well studied, little to no formal research

Expectation is similar to neurotypical individuals

Can be shortened due to comorbid health conditions (e.g. heart problems or mental health issues

Question 3

autism life expectancy

Answer 3

average have a mortality rate 16 years earlier then neurotypical individuals

rises to 30 years earlier in autistic individuals with an intellectual disability

still not fully understood why this is the case:

• comorbidity with epilepsy?
• increased rates of suicide?
• increased risk of health conditions?

Question 4

autism comorbidity with epilepsy

Answer 4

20-40% more likely to have epilepsy

Question 5

autism comorbidity with depression, contemplate and commit suicide

Answer 5

~70% with anxiety and depression

9x more likely to commit suicide

66% adults contemplated suicide

Question 6

autistica

Answer 6

autism charity - “personal tragedies, public crisis”

govt strategy = ‘think autism’ (2014)
campaign to revise it

revised in 2018 to include the objective to reduce the gap in life expectancy:

• greater research
• developing policies, support services and treatments

Question 7

down’s syndrome life expectancy

Answer 7

life expectancy has risen drastically:

• 12 y/o in 1949
• 60 y/o currently

reasons:

• improvements in living conditions (before would have gone to an asylum/be institutionalised)
• more than half of babies born with Down Syndrome also have congenital heart conditions

Question 8

autism change with age

Answer 8

not much known about profile

some suggestion that some areas of difficulty improve with age - e.g. theory of mind

Question 9

william’s syndrome change with age

Answer 9

childhood = clear profile of strengths and weaknesses in childhood

Howlin et al (2008)

• adults with William’s Syndrome (Mean age of 26, mean IQ of 61)
• almost identical cognitive profile to children with WS (based on the WISC/WAIS)
• reading, spelling, arithmetic and social adaptation stayed at a low level (6-8yr old equivalent)

Question 10

study of william’s syndrome in adulthood - health, education, independence, and work

Answer 10

Howlin & Udwin (2006)

postal 42-item parental questionnaire for parents with children aged 18+ - 239 respondents
mean age of individual with William Syndrome was 36 years (118 males, 121 females)

Health:

• 79% had heart problems
• 51% had depression or anxiety

Independence:

• 62% still lived with families
• 16% lived independently (with or without support)
• 2% residential communities

Education:

• 71% had attended college
• 33% had attained formal qualifications (e.g. GCSEs, GNVQs, NVQs)

Work:

• 20% still in full time education
• 30% attended day centers
• 38% job placement
• 1.6% in full time employment
• 18% part time employment
• 9% unpaid/voluntary
• 6% stay at home

Question 11

support for william’s syndrome in adulthood

Answer 11

charities raise awareness, support research and provide help to families

parents of adults with Williams Syndrome raise concerns for the level of official support available specifically for adults

Howlin & Udwin (2006)

• 23% of parents dissatisfied with medical help (mental or physical)
• 33% unhappy with educational provision
• 20% unhappy with workplace assistance

Question 12

downs syndrome - differences in development

Answer 12

children reach each developmental stage later & stay there longer

leads to developmental gap widening with age

Question 13

down’s syndrome - cognitive differences

Answer 13

difficult to investigate due to co-morbidity with early onset Alzheimer’s Disease

many instruments used to assess cognitive ability aren’t appropriate for all individuals

Carr & Collins (2018) longitudinal study of infancy to 50 years:

• memory/cognitive decline in-line with expectations for neurotypical individuals (controlling for dementia)

Question 14

down’s syndrome - physical differences

Answer 14

Esbensen (2010)

• accelerated ageing
• skin and hair changes
• early onset menopause
• visual and hearing impairments
• diabetes
• musculoskeletal problems

Question 15

key feature of Alzheimer’s (proteins)

Answer 15

excessive amounts of 2 proteins:

• amyloid (forms plaques)
• tau (forms tangles)

Up to 100% of individuals 40+ years of age show the plaques associated with AD (although don’t necessarily have AD)

Question 16

why is down syndrome and alzheimers linked

Answer 16

gene that codes for amyloid production (APP) is located on chromosome 21 (the chromosome that is duplicated in Down syndrome

Question 17

down syndrome and alzheimers - age of onset

Answer 17

onset of dementia can be hard to identify as may be masked by pre-existing behaviours = hard to identify clear prevalence rates

Head et al., (2012):

• 30 – 39 years up to 33% show signs of AD
• 40 – 59 years up to 55% show signs of AD
• 60+ years up to 75% show signs of AD
• age of onset is typically 65+ years in neurotypical individuals

presents differently to onset of Alzheimer’s Disease in older neurotypical individuals

however, no specific tool for diagnosis in DS & no tailored support available

current research is working to gain a better understanding of the course of AD in DS (Firth et al., 2018)

Question 18

autism age of diagnosis

Answer 18

average age of diagnosis is ~ 5 years of age

diagnosis in adulthood is increasing

‘Lost Generation’ - previously excluded from a diagnosis

Question 19

causes of the ‘lost generation’ of autism

Answer 19

• change in diagnostic criteria
• gender differences
• better recognition
• reduction of stigma
• camouflaging
• generational differences - atypical behaviour viewed differently
• comorbid diagnoses
• barriers to diagnosis:
  delays
  not being believed

Question 20

autism - support after diagnosis as an adult

Answer 20

Crane et al (2020)

• diagnosis is a ‘gateway’ to support & services
• autistic adults tend to be dissatisfied with the help and support offered, with many receiving no support at all
• post-diagnostic support programmes have been developed for parents and young autistic people but there is little equivalent support available for autistic adults

Cummins et al (2020)

• particular lack of support for autistic adults without intellectual disabilities – at risk of ‘falling through the cracks’
• despite importance of deficits in ‘social communication and interaction’ when reaching a diagnosis, there are few pathways to Speech and Language Therapy for adults

Question 21

current and future aims for autism research in adulthood - previous strategies (3)

Answer 21

Focus aimed at advising on improvements and creation of services for adults

2010 - The Autism Strategy (Department of Health) provided requirements regarding minimum levels of support for adults (e.g., awareness training for all staff providing services to autistic adults)

2014 - Think Autism which highlighted 15 priority areas for development (e.g., acceptance within the local community and connection with other people)

2018 - revised this to include the objective to reduce the gap in life expectancy