adulthood and neurodevelopmental conditions

Question 1

overview of neurodevelopmental conditions in adulthood

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 in adulthood

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 in adulthood

Answer 3

• on 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, could be due to:
  –> comorbidity with epilepsy
  –> could be due to increased rates of suicide
  –> increased risk of health conditions

Question 4

Autistica (charity) and Autism

Answer 4

• Autistica = ‘Personal Tragedies, Public Crisis’
• campaign to revise the government’s national strategy for supporting autistic adults (the ‘Think Autism’ campaign)
• revised in 2018 to include the objective to reduce the gap in life expectancy:
  –> greater research
  –> developing policies
  –> developing support services
  –> better treatments

Question 5

Down Syndrome and adulthood

Answer 5

• life expectancy has risen drastically
  –> from 12 years of age in 1949 to 60 years of age currently
• reasons for this:
  –> improvements in living conditions
  –> more than half of babies born with Down Syndrome also have congenital heart conditions

Question 6

the different neurodevelopmental conditions and adulthood

Answer 6

• not much known about profile of autism, although some suggestion that some areas of difficulty may improve with age
  –> e.g. Theory of Mind
• more research investigating profiles of William’s Syndrome & Down Syndrome

Question 7

William’s Syndrome profile: children and adults

Answer 7

• children:
  –> clear profile of strengths and weaknesses
• almost identical cognitive profile to children with William’s Syndrome (based on the WISC/WAIS)
• reading, spelling, arithmetic and social adaptation stayed at a low level
  –> equivalent to 6-8 year-olds

Question 8

adult life with William’s Syndrome (Howlin & Udwin, 2006)

Answer 8

• 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% lived in residential communities
• education
  –> 71% had attended college
  –> only 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 9

support for adults with William’ Syndrome

Answer 9

• many charities do an excellent job of raising awareness, supporting research and providing help to families
• however, parents of adults with Williams Syndrome raise concerns for the level of official support available specifically for adults

Question 10

Howlin and Udwin (2006) - parent satisfaction

Answer 10

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

Question 11

children with down syndrome vs their peers

Answer 11

• children develop more slowly than their peers
• reach each developmental stage later & stay there longer
• leads to developmental gap widening with age

Question 12

cognitive effects of Down Syndrome

Answer 12

• difficult to investigate due to co-morbidity with early onset Alzheimer’s Disease
• many of the instruments used to assess cognitive ability aren’t appropriate for all individuals

Question 13

Carr & Collins (2018) - autism study

Answer 13

• longitudinal study
  –> infancy to 50 years
• memory/cognitive decline in-line with expectations for neurotypical individuals (controlling for those with dementia)

Question 14

physical effects of autism - Esbensen (2010)

Answer 14

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

Question 15

Down Syndrome & Alzheimer’s

Answer 15

• Key feature of Alzheimer’s disease is excessive amounts of two proteins:
  1. amyloid (forms plaques)
  2. tau (forms tangles)
• the gene that codes for amyloid production (APP) is located on chromosome 21
  –> the chromosome that is duplicated in Down Syndrome
• up to 100% of individuals (40yrs+) show the plaques associated with Alzheimer’s
  –> although don’t necessarily have Alzheimer’s

Question 16

Down Syndrome and Dementia

Answer 16

• onset of dementia can be hard to identify as may be masked by pre-existing behaviour
  –> hard to identify clear prevalence rates
• presents differently to onset of Alzheimer’s Disease in older neurotypical individuals
• however, no specific tool for diagnosis in Dementia & no tailored support available
• current research is working to gain a better understanding of the course of Alzheimer’s in Dementia

Question 17

Head et al (2012) - dementia in neurotypical individuals

Answer 17

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

Question 18

Autism 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 for the ‘Lost Generation’

Answer 19

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

Question 20

support after adult diagnosis - Crane et al (2020)

Answer 20

• diagnosis is a ‘gateway’ to support & services
• however, 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

Question 21

support after adult diagnosis - Cummins et al (2020)

Answer 21

• 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 22

future aims for neurodevelopmental conditions in adulthood

Answer 22

• focus of much recent research aimed at advising on improvements and creation of services for adults
• the Autism Strategy (Department of Health, 2010) provided requirements regarding minimum levels of support for adults
  –> e.g. awareness training for all staff providing services to autistic adults
• superseded by Think Autism (2014) which highlighted 15 priority areas for development
  –> e.g. acceptance within the local community and connection with other people
• revised in 2018 to include the objective to reduce the gap in life expectancy

Question 23

summary

Answer 23

• life expectancy in conditions can vary, and support can play a large role in life expectancy neurodevelopmental
• often we don’t have a clear understanding of how the cognitive profiles we see in children present in adults
• due to multiple factors we are now seeing an increase in the amount of adults receiving an autism diagnosis
• the support available to individuals can vary, and it is often difficult to identify support available to adults