PSY2004 S2 W9 Adulthood & Neurodevelopmental COnditions

Question 1

How do neurdevelopmental conditions affect life expectancy?

Answer 1

Neurodevelopmental conditions are lifelong.
Certain neurodevelopmental conditions can lead to specific physical characteristics that may impact on life expectancy.
But Many individuals are expected to have normal life expectancies.

Question 2

What is the life expectancy of william’s syndrome?

Answer 2

life expectancy is not well studied little to no formal research.
Expectation is similar to neurotypical individual.
Can be shortened due to comorbid health conditions ( heart problems or mental health issues)

Question 3

Why has the life expectation increased in down syndrome?

Answer 3

imprvoements in living conditions
more than half of babies born with down syndrome also have congenital heart conditions, improvement treatment for heart conditions.

Question 4

What is the life expectancy of autism?

Answer 4

Until relatively recently, it was thought that, on average, autistic people have a life expectancy of 16 years shorter than neurotypical individuals.

And that this rises to 30 years shorter in autistic individuals with an intellectual disability

However, previous work did not account for the fact that most people with a diagnosis of autism are young; this therefore skews age-estimates of life expectancy.

Question 5

What did a more recent study find on life-expectancy and autism?

Answer 5

A recently published study looked at medical records in the UK (O’Nions et al. 2024) and calculated mortality rate taking age into account.

They found a smaller difference in the life-expectancy of autistic and neurotypical individuals.

Life-expectancy was still lower in autistic people, particularly those with co-occurring intellectual disability.

Question 6

If there is a reduce life expectancy for autistic people, why might this be?

Answer 6

Autistic people are more likely than the general population to experience co-occurring issues, including epilepsy, hearing or visual impairments, cerebral palsy, as well as higher rates of psychiatric conditions, suicide attempts, immune conditions, gastrointestinal and sleep disorders, obesity, heart disease, and diabetes.

Question 7

What are barriers which make it difficult to access healthcare?

Doherty et al. 2022

Answer 7

Communication barries: avoiding/delaying GP visit because of difficulty with communication. [autistic PTT score significantly higher than non-autistic PTT]

Sensory Barries: avoiding/delay GP visit due to sensory issues (environment, crowds, lighting, touch during examination, noise, smells) [autistic PTT score significantly higher than non-autistic PTT]

Question 8

How does this difficulty in accessing health care affect autistic individuals?

Answer 8

Medical records show increased adverse outcomes for autistic people as a result of experiencing barriers to healthcare.

Question 9

What would a autism friendly general practice look like?

Answer 9

Communication: clear, unambiguous language, e-consultation, provide instruction/follow up advice in writing, signpost to directive resources

Communication/Sensory processing: individualized access plan nad atsim training for all staff

Sensory Processing: sensory audit of premises, offer appointment times/arrangements that facilitate antendence, allow time to process information within consultations

Predicatbaility/Sensory Processing: say what’s happening & what to expect during examinations

Predicatability: regular/preferred doctor, provide information on what to expect at appointment, advise on expected timing for procedures or appointments.

Predicatability/communication: longer appointment slots

Question 10

What is the life expectancy in neurodevelopmental conditions?

Answer 10

Life expectancy in neurodevelopmental conditions can vary, and support can play a large role in life expectancy

Question 11

What research is currently under-developed ?

Answer 11

Research is currently under-developed in terms of providing a clear understanding of how the cognitive profiles we see in children present in adults

Question 12

What has increased in recent years?

Answer 12

Due to multiple factors, we are now seeing an increase in the number of adults receiving an autism diagnosis, but there are likely to be many autistic adults who are currently undiagnosed.

Question 13

What support is available?

Answer 13

The support available to individuals can vary, and it is often difficult to identify support available to adults

Question 14

Are there more autistic hildren or adults?

Answer 14

There are more autistic children than adults.
Evidence suggests that this is because of under-diagnosis of autism in adults.
This is an important public health challenge as it suggests that many individuals are not getting support / advocacy / adjustments that would potentially be of benefit.

Question 15

What challenges are associated with diagnosing autism in adulthood?

Answer 15

Individuals may not recognise experiences, may have developed coping strategies.

Diagnosis usually requires information about development and experiences / milestones in childhood; it can be difficult to obtain this information for adults.

The lack of developmental ‘norms’ against which to reliably gauge difficulties in adults makes it difficult to compare autistic adults with autistic children.

Question 16

What happens when they grow up? What are the Two perspectives?

Answer 16

Cognitive and quality of life

Question 17

How does william’s syndrome (WS) develop in adulthood?

Answer 17

Clear cognitive profile of strengths & weaknesses in childhood.
Howlin et al. 2008
Adults with WS alsmost identical cognitive profile to children with WS, although some evidence for increased visuo-spatial ability in adults compared to children

Question 18

How is health affected in adulthood in WS?

Answer 18

Health: 79% had heart problems; 51% had depression or anxiety

Question 19

How is work affect in WS in adulthood?

Answer 19

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 20

How is education affected in adulthood in WS?

Answer 20

Education: 71% had attended college; only 33% had attained formal qualifications (e.g. GCSEs, GNVQs, NVQs)

Question 22

How is independence affected by adulthood in WS?

Answer 22

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

Question 23

Is there support in adulthood for WS?

Answer 23

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

Howlin & Udwin (2006) – 23% of parents dissatisfied with medical help (mental or physical); 33% unhappy with educational provision; 20% unhappy with workplace assistance.

Question 24

How does Down Syndrome develop in adulthood?

Answer 24

Children develop more slowly than their peers.
Cognitive.
Physical

Question 25

What is meant by Children develop more slowly than their peers? | down syndrome

Answer 25

Reach each developmental stage later and stay there longer. Lead to developmental gap widening with age

Question 27

How is cognition affected by adulthood in down syndrome?

Answer 27

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 Carr & Collins (2018) longitudinal study: infancy – 50 years: Memory/cognitive decline in-line with expectations for neurotypical individuals (controlling for dementia)

Question 28

How do audlts with down syndrome experience physical ageing? | Esbensen 2010

Answer 28

Accelerated ageing Skin and hair changes, early onset menopause, visual and hearing impairments, diabetes and musculoskeletal problems

Question 29

What are key features of Alzheimers?

Answer 29

Key feature of Alzheimer’s disease is excessive amounts of two proteins: amyloid (forms plaques) and tau (forms tangles)

Question 30

How is Alzheimers associated with down syndrome?

Answer 30

The gene that codes for amyloid precursor protein (APP) is located on chromosome 21 = the chromosome that is duplicated in Down Syndrome. The presence of an extra copy of chromosome 21, which includes the gene for amyloid precursor protein (APP),This leads to increased amyloid plaque formation, a hallmark of Alzheimer's disease Up to 100% of individuals 40+ years of age show the plaques associated with AD (although don’t necessarily have AD)

Question 31

What can be hard to identify?

Answer 31

Onset of dementia, as may be masked by pre-existing behaviours, hard to identify clear prevalence rates

Question 32

What is the onset of dementia in neurodevelopmental conditions? | Head et al., (2012)

Answer 32

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 33

What is the onset of dementia (Alzheimers) in neurotypical? | Head et al., (2012)

Answer 33

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

Question 34

What is cognition like in adulthood in autism?

Answer 34

Not much is known about cognitive profile of autism in adulthood, although suggestion that some areas of difficulty may improve with age (e.g. Theory of Mind) Existing research is currently inconclusive. Focus tends to be on whether typical changes in cognition that are seen in adulthood are similar (or different) in autism.

Question 35

What are the different models for possible age-trajectories in autism?

Answer 35

Model 1: no difference in aging trajectories Model 2: accelerated ageing in autism Model 3: Autism as a protective mechanism for age related change

Question 36

What is improving?

Answer 36

Life-expectancy in neurodevelopmental conditions is improving (and may have been underestimated previously in autism). Active research in this area addressing both physical (e.g. Down syndrome) and social (e.g. barriers to healthcare) issues.

Question 37

How does neurodevelopmental conditions change between childhood and adulthood?

Answer 37

In general, it appears that presentation of neurodevelopmental conditions in childhood is similar to presentation of neurodevelopmental conditions in adulthood. While Down syndrome appears to impact on aging due to an overlap with AD, WS and autism do not appear to directly impact on aging trajectories. However, research in this area is quite limited. In particular, longitudinal studies – which are the gold standard – are few and far between.

Question 38

What do we know about autism in adults?

Answer 38

From screening and medical records studies, community based case identification studies: Autism prevalence is much lower in adulthood than in childhood. This is most likely because diagnostic criteria have changed over time and awareness of autism has increased, not necessarily because the actual incidence of autism has dramatically increased (see Emma Morgan’s previous lecture on possible environmental causes of autism).

Question 39

What is the prevalence of autism in adults in the us? | Study 1: Crosyenor et al. 2024

Answer 39

Method: 2011-2022: health records & insurance claims data Diagnosis of ASD was identified from the records. ASD prevalence calculated as number of ASD diagnoses out of the number of people for whom records were available that year. Results: There are substantially fewer adults diagnosed with autism than children. Increase in diagnoses over time.

Question 40

What is the prevalence of autism in adults in the uk? | O'Nions et al. 2023

Answer 40

Method: Population-based retrospective cohort study of UK medical records. DIagnosis of ASD was identified from the records. ASD prevalence calculated as number of ASD diagnoses out fo the nb of people for whom records were available that year. Data were considered separately for individuals with and without intellectual disability. Also looked at prevalence in males and females. Results: There are substantially fewer adults diagnosed with autism than children. Increase in diagnoses over time (not shown in graph). Increase in diagnoses in males and those with intellectual disability. The proportion of females diagnosed with autism is increased in adulthood

Question 41

Why are there fewer autistic adults than autistic children?

Answer 41

Maybe it’s not the case that there actually are fewer autistic adults than autistic children …. There might just be fewer autistic adults with a diagnosis.

Question 42

Wat to medical records studies tell us?

Answer 42

how many people have a diagnosis of autism, but this may not actually reflect the actual number of autistic people in a community.

Question 43

What are community based case identification study?

Answer 43

Medical record studies. To make sure the actual nb of autistic people in a community: population should be screened for autism, would id who meets the diagnostic thresholds irrespective of whether they have a diagnosis

Question 44

What approach has been used to estimate the rate of autism?

Answer 44

Brugha et al. (2011) used a stratified sampling approach via the Adult Psychiatric Morbidity Survey (APMS) to estimate autism rates in the general population.

Question 45

What is the adult psychiatric mobility survey (APMS)?

Answer 45

Survey administered over several years to establish the prevalence of psychiatric conditions in the population. Surveys carried out in 1993, 2000, 2007, 2014. Autism is not a psychiatric condition, but questions were included in the survey (from 2007) that enabled autism prevalence to be evaluated. Designed to be representative of households in England. Data available to researchers for secondary data analysis to address a range of research questions.

Question 46

What did Brugha et al. 2011 study?

Answer 46

Method: stratified sampling, used data from 2007 APMS survey for initial screen. PTT with initially high screening scores were then followed up for more in depth evaluation. Autism was asssessed in the general population using standardised tools rather than self-report ADOS score of >10 considered cut off for autism Results: the estimated autism prevalence was 0.98% of the UK population. None of the identified cases had an existing diagnosis of autism. Rate higher in men (1.82%) than in women (0.2%). Prevalence level in adults (in 2007), similar to prevalence level reported in children in 2007 showing that “the rate of ASD is not significantly associated with age, suggesting that the causes of autism are temporally constant”. Autism was associated with reduced verbal IQ, low educational attainment and male gender.

Question 47

What is stratified sampling?

Answer 47

postcode stratification to provide representation across socioeconomic profiles

Question 48

What was Brugha et al. 2011 follow up study?

Answer 48

Follow up study focused: on individuals with intellectual disability. The previous results from APMS were combined with new data obtained from individuals living in care homes Reuslts: Autism prevalence is higher in individuals with intellectual disability. Gender differences in autism prevalence are reduced in individuals with intellectual disability. The prevalence of autism in England, estimated from the combined reweighted sample, was 1.1%. Because people with moderate to profound intellectual disability make up just 0.3% of the total population, overall associations of autism with age and gender for the population as a whole are unchanged by the inclusion of rates for people with intellectual disability.

Question 49

Why is there a need for a follow up study? | Brugha et al. 2011

Answer 49

Reason for follow up: Only excluded people who were living in care-setting and/or had moderate to severe intellectual disabilities. True prevalence for autism in more representative sample of the population remained unclear.

Question 50

What did Brugha et al. (2011) find?

Answer 50

The weighted prevalence of ASD in adults was estimated to be 9.8 per 1000. Rates were higher in men, those without educational qualifications, and those living in rented social (government-financed) housing. The prevalence of ASD in this population is similar to that found in children. Adults with ASD living in the community are socially disadvantaged and tend to be unrecognized.

Question 51

What did Lai & Baron-Cohen find? 2015 | Reading

Answer 51

Improved awareness that autism spectrum conditions in adulthood might have been missed owing to previous diagnostic restrictions, increasing numbers of adults are receiving appropriate and timely diagnoses. With improved awareness that ASC in adulthood might have been missed owing to previous diagnostic restrictions, increasing numbers of adults are receiving appropriate and timely diagnoses.