adulthood and neurodevelopmental conditions Flashcards
1
Q
overview of neurodevelopmental conditions in adulthood
A
- neurodevelopmental conditions are life long
- certain neurodevelopmental conditions can lead to specific physical characteristics
- but many individuals are expected to have normal life expectancies
2
Q
William’s syndrome in adulthood
A
- 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
3
Q
Autism in adulthood
A
- 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
4
Q
Autistica (charity) and Autism
A
- 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
5
Q
Down Syndrome and adulthood
A
- 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
6
Q
the different neurodevelopmental conditions and adulthood
A
- 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
7
Q
William’s Syndrome profile: children and adults
A
- 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
8
Q
adult life with William’s Syndrome (Howlin & Udwin, 2006)
A
- 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
9
Q
support for adults with William’ Syndrome
A
- 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
10
Q
Howlin and Udwin (2006) - parent satisfaction
A
- 23% of parents dissatisfied with medical help (mental or physical)
- 33% unhappy with educational provision
- 20% unhappy with workplace assistance
11
Q
children with down syndrome vs their peers
A
- children develop more slowly than their peers
- reach each developmental stage later & stay there longer
- leads to developmental gap widening with age
12
Q
cognitive effects of Down Syndrome
A
- 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
13
Q
Carr & Collins (2018) - autism study
A
- longitudinal study
–> infancy to 50 years - memory/cognitive decline in-line with expectations for neurotypical individuals (controlling for those with dementia)
14
Q
physical effects of autism - Esbensen (2010)
A
- accelerated ageing
- skin and hair changes
- early onset menopause
- visual and hearing impairments
- diabetes
- musculoskeletal problems
15
Q
Down Syndrome & Alzheimer’s
A
- 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
16
Q
Down Syndrome and Dementia
A
- 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
17
Q
Head et al (2012) - dementia in neurotypical individuals
A
- 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
18
Q
Autism Diagnosis
A
- average age of diagnosis is ~5 years of age
- Diagnosis in adulthood is increasing
- ‘Lost Generation’ = previously excluded from a diagnosis
19
Q
causes for the ‘Lost Generation’
A
- 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
20
Q
support after adult diagnosis - Crane et al (2020)
A
- 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
21
Q
support after adult diagnosis - Cummins et al (2020)
A
- 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
22
Q
future aims for neurodevelopmental conditions in adulthood
A
- 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
23
Q
summary
A
- 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
