neurodevelopmental conditions in adulthood Flashcards
neurodevelopmental conditions in adulthood - how long do they last and impacts
- neurodevelopmental conditions are life long
- certain neurodevelopmental conditions can lead to specific physical characteristics
- but many individuals are expected to have normal life expectancies
william’s syndrome life expectancy
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
autism life expectancy
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?
autism comorbidity with epilepsy
20-40% more likely to have epilepsy
autism comorbidity with depression, contemplate and commit suicide
~70% with anxiety and depression
9x more likely to commit suicide
66% adults contemplated suicide
autistica
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
down’s syndrome life expectancy
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
autism change with age
not much known about profile
some suggestion that some areas of difficulty improve with age - e.g. theory of mind
william’s syndrome change with age
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)
study of william’s syndrome in adulthood - health, education, independence, and work
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
support for william’s syndrome in adulthood
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
downs syndrome - differences in development
children reach each developmental stage later & stay there longer
leads to developmental gap widening with age
down’s syndrome - cognitive differences
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)
down’s syndrome - physical differences
Esbensen (2010)
- accelerated ageing
- skin and hair changes
- early onset menopause
- visual and hearing impairments
- diabetes
- musculoskeletal problems
key feature of Alzheimer’s (proteins)
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)
why is down syndrome and alzheimers linked
gene that codes for amyloid production (APP) is located on chromosome 21 (the chromosome that is duplicated in Down syndrome
down syndrome and alzheimers - age of onset
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)
autism age of diagnosis
average age of diagnosis is ~ 5 years of age
diagnosis in adulthood is increasing
‘Lost Generation’ - previously excluded from a diagnosis
causes of the ‘lost generation’ of autism
- 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
autism - support after diagnosis as an adult
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
current and future aims for autism research in adulthood - previous strategies (3)
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
