Supporting material: Children with a learning disability and autistic children aged 4 – 17 years

1. Background and scope

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This NCMD thematic report aims to identify common characteristics and causes of death for autistic children and children with a learning disability aged between 4 and 17 years. It will investigate factors associated with the deaths of these children and identify common themes, to inform policymakers, commissioners, those providing services to children and young people, and those involved in reviewing deaths of children.

Children or young people with a learning disability

Children or young people with a learning disability (internationally referred to as individuals with an intellectual disability) are defined by the Department of Health and Social Care as those who have a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with a significantly reduced ability to cope independently (impaired adaptive and/or social functioning) and which is apparent before adulthood is reached and has a lasting effect on development.

A learning disability is different from having a specific learning difficulty such as dyslexia, or autism (a neurodevelopmental condition), or a mental health condition. Some children may have all of these as well as having a learning disability. Children with a learning difficulty only are not included in this report.

The National Health Service (NHS) is committed to improving services for children with a learning disability and autistic children, and this has been highlighted as a key area of work in the NHS Long Term Plan.

Where possible, a learning disability should be identified in childhood to ensure the child gets the support they need at the right time and throughout their lives. It is also easier to identify learning disability in childhood when children are in education, with regular contact with professionals who are monitoring their learning and attainment.

Most children with a learning disability will have Special Educational Needs (SEN) which means they are likely to need extra or different help from that given to other children of the same age. This is known as special educational provision. There are three categories of SEN associated with a learning disability:

  • Moderate learning disability (MLD)
  • Severe learning disability (SLD)
  • Profound multiple learning disability (PMLD)

SEN support is provided through schools and colleges. However, education, health and care plans (EHCPs) are available for children and young people aged up to 25 who need more support than is available through SEN support. EHCPs identify educational, health and social needs and set out the additional support to meet those needs.

Autistic children and young people

Autism Spectrum Disorder (ASD) is a life-long neurodevelopmental condition that affects how people communicate and interact with the world. Autism is widely varied at an individual level and some children experience more challenges than others. The National Autistic Society highlights the following difficulties that autistic people may experience:

  • Social communication and interaction
  • Repetitive and restrictive behaviour
  • Over or under-sensitivity to light, sound, taste or touch
  • Highly focused interests or hobbies
  • Extreme anxiety
  • Meltdowns or shutdowns

Autism is always present from birth; however, it may not be diagnosed until later in childhood, or in some cases not until adulthood.

Further information on how these deaths were identified, and limitations of this report, are described in the Methodology and Limitations section.

2. Personal stories

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A day in the life of a mum with a child with a learning disability

The day began with an email from my son’s primary school SENCO, informing me that the paperwork submitted for his annual review last year had not been amended by the local authority, and this was only just noticed. This poses a problem as our next EHCP is due for amendments in July, and it’s crucial for our transition to secondary schools next year to have all reports up-to-date and accurate. Since last year’s report hasn’t been ratified by the local authority, we are unable to have the specialist teacher assess Alex and provide a report as this is not covered in the provision. I braced myself for a difficult day.

Alex struggled to focus this morning, displaying lots of sensory-seeking behaviour. While I focused on helping him calm down, I heard my youngest daughter crying, claiming that her sibling hit her. I tried to console her, but this only aggravated my middle child, and I promptly recognised that she hit her sister to regain some of my attention. Chloe struggles emotionally with feelings of anxiety and neglect, and with the support of a child psychologist, we are trying to help her manage these feelings. I realised we were all going to be late for school (and therefore work) this morning. I called my mother and asked for her to help with the girls’ school drop-off as I needed to get to work on time today and getting Alex ready was proving challenging.

As I dropped Alex off, I stopped by the school office to show them tomorrow’s audiology appointment letter so that he could be released from school. While walking to the tube station, I received a call from the only holiday club that accepts Alex without 1:1 support, requesting a discussion about future provisions due to him wandering off last time. I realised that I was running out of options for school holiday provision that would take all three of my children. Previous attempts to secure resources from the local authority “short breaks” cost me countless hours of chasing and resulted in rejection.

At work, I momentarily escaped the chaos and focused on the junior doctor tutorial I was due to deliver. However, I received a call from an unknown number and excused myself for a few minutes. The Royal Brompton hospital was asking me to collect the equipment for Alex’s home sleep study between 11-1 on Thursday. My clinical work commitments precluded me from being able to attend then, and I was forced to reschedule for the only other available slot, which sadly coincided with my youngest daughter’s school assembly. I had little choice as Alex had not had a sleep study since weaning off his thickened fluids, and we were worried about his nocturnal cough so had been emailing the respiratory team for some time. I hung up and returned my attention to my students.

I took my lunch break in the office to briefly join Barnet’s new integrated therapy talk, only to learn that Alex no longer qualified for ongoing speech therapy due to restructuring, despite making significant progress with his speech therapist’s support. Frustrated, I had to return to work, reminded of the unpaid invoice from his private therapist, fearing she might stop seeing Alex if left unpaid. I received a call from the GP pharmacist requesting a medication review before they could refill Alex’s prescriptions. Despite explaining that he only had a week’s supply of thyroxine and urgently needed a refill, they insisted on receiving recent test results before proceeding. Despite my concerns about the potential harm caused by withholding his medication, they maintained their stance.

After work, I came home to a flurry of WhatsApp messages from the Barnet Downs Syndrome parents’ group, sharing frustrations about recent NHS Occupational Therapy experiences and exchanging reports. I opened one of the attachments, instantly recognising the generic report and advice given, fuelling my anger. As the parent rep, I knew I should share the news from today’s Senior Leadership Team meeting but decided against it; it would cause much upset on the back of this discussion.

The girls are in bed, but Alex is up with my husband, reading. He tells me that Alex has had a “tricky” day. He has a cold which we know worsens his obstructive sleep apnoea which in turn leads to restless nights for us all. My husband and I quickly had dinner and bid each other good night, as I would be taking the first night shift, with him taking over at 4 am.

While lying in bed next to Alex, I finished up the day’s admin, which included a request for unpaid leave for the upcoming half-term school holiday, an email to the school to inform them of the situation likely to impact Alex’s behaviour, and an email to the endocrinologist to ask them to urgently contact the GP about Alex’s medication.

 

Sammy’s story

Sammy was the eldest of four children and a loving caring little boy. He enjoyed several hobbies, including piano, carpentry, upholstery and horse-riding and he was well known and popular in his local community.

Sammy was autistic and was diagnosed with the disability, Prader-Willi syndrome (PWS), at birth, a rare chromosomal genetic condition of the brain with a known association with urge control appetite and emotional dysregulation which often increase with age.  It is a very complex condition with numerous medical needs, and needs a high degree of care. For Sammy, the emotional dysregulation itself manifested itself in the form of high-risk episodes over which he had no control, caused by a defective hypothalamus, the part of the brain that regulates mood. These would include trying to jump out of moving cars and the windows of buildings and trying to drown himself in the sea. While he found them incredibly distressing and frightening, he could not prevent them from happening. As he grew older and bigger I had to turn to the police for assistance as Sammy did not meet the criteria for protective social care as he had been removed from the Children with Disability Team in 2014. In 2018 we moved to Kent and after a year out of school, during which time we had to appeal against decisions to place him in a mainstream school, he was placed in a special school in March 2019 where he thrived in the supportive, high staff ratio environment they provided, although the “episodes” occurred in school too, as they had a neurological, not behavioural origin, and could not be eliminated by simply adapting the environment. Concerns about the episodes remained and he was at risk of significant harm when he was in a distressed and emotional state. School, social workers and doctors had repeatedly requested support be provided for us in the home, but this was always turned down, until end of January 2020 when just 10 weekly hours were reluctantly provided on a temporary basis, and not for school holidays. Social services were told these hours were insufficient to keep him safe. In March 2020 he was deemed to be vulnerable to the effects of Covid-19 and advised to shield which meant he no longer had access to the safety that the high staff ratio provided at school. A child in need meeting was held to discuss increasing the home support hours but no action was taken. Sadly, a few days later, Sammy left the house early in the morning and died of injuries he sustained in a fall.  The coroner issued a Prevention of Future Deaths Notice highlighting that it was “probable that a failure to provide extra support contributed to Sammy’s death” caused by “inadequate support” from the Local Authority and Mental Health Services. She was concerned that there may be other similar incidents “if children with complex neurodevelopmental needs are excluded from accessing the care and treatment they require to keep them safe.” I’m grateful to the coroner for her careful consideration of the issues surrounding Sammy’s death and her recommendations to address these issues at a national level. If recognition of what happened to Sammy results in action to prevent this from happening again and changes outcomes for people with PWS and other neurological conditions, it brings me some comfort in the face of the devastating and unnecessary loss of my beautiful, special son.

 

The Emergency Department and autistic children or children with a learning disability
Dr Liz Herrieven

I’ve worked in Paediatric Emergency Medicine for 22 years. I’ve seen an awful lot in the way of improvements in care for the children we see over that time, but there is one area in which we could still do an awful lot better.

Autistic children and children with learning disabilities are very vulnerable when they attend our departments, whatever the illness or injury that brings them. Emergency Departments are busy, noisy, bright and unpredictable – an awful place to wait, even without additional needs. We would love to be able to give children with sensory processing issues somewhere quieter to wait, but often we just don’t have the space. Things like ear defenders can help, which we have in our department now, but they’re not perfect. It is also difficult to know how long children may be waiting to be seen – we have to see the sickest first, although I think we’d all like to be able to bring children with learning disabilities or those who are autistic forward in the queue.

I know a lot of trainees and even senior colleagues can feel nervous seeing children with learning disabilities or those who are autistic. We know, thanks to publicity campaigns and projects such as LeDeR, that these groups are vulnerable to serious illness, but there is very little in undergraduate or postgraduate curricula about this. We worry about what we’ll miss, and we worry about making assumptions. We also worry about what we don’t know. There are many, many different types of underlying syndromes and conditions and, with the best will in the world, we can’t know everything about all of them. Families are often worried and frustrated, and who can blame them? They’ve often had to face daily struggles to get the services and support their children require and they’ve probably had negative experiences with healthcare before. Some staff might be uncomfortable about asking families about their child’s condition, or about what they might be like when they are well, for fear of sounding as though they don’t know something or are inexperienced, but we have to get over that and understand that parents are often the experts in their child.

Communication with the child can be daunting. Again, we need to get over this. Yes, the child may not speak, or may not speak clearly, but they can still tell us a lot through their demeanour, posture, movements, actions, activity, noises, signs, and so on. We mustn’t be scared to ask parents to help us in understanding what their child is trying to say. We also need to make sure our own communication is as clear as it can be.

Examination can be challenging, particularly if the child has sensory issues or a learning disability, but we still need to do a thorough job and do our best to help the child to understand and tolerate what is happening. Often, we have to do things a little differently, which can feel uncomfortable for us, but it’s what needs to be done. The same goes for investigations and treatments.

Time is another area that can cause added pressure for staff. We have a busy waiting room of patients to see, with pressure to keep to targets and to get everyone seen quickly, but we have to make ourselves slow down sometimes, and acknowledge that these vulnerable groups of children need extra time from us. It’s easy to forget that though, in the midst of all the chaos.

There’s a lot about caring for children with a learning disability or those who are autistic that is anxiety-inducing for Emergency Department staff, but rightly so – we need to get things right. Things are much, much more anxiety-inducing for this group of children and their families.

3. Methodology and limitations

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Learning disability – cohort identification and exclusions

Deaths of 4–17-year-olds where the Child Death Overview Panel (CDOP) in England were planning to, or had already, reviewed the death were captured. This includes a small number of deaths that occurred abroad, and of children not usually resident in England. Deaths of children under 4 years were not included in this report due to difficulties in diagnosing a learning disability in younger children and to keep consistent with previous NCMD publications.

Children with a learning disability were identified using the statutory reporting form question “Did the child have a learning disability?”, and deaths where the response to this question was “Yes” were extracted. These cases were then validated to ensure that only appropriate cases that met the definition of a learning disability were included for analysis. This process is outlined by Figure 18.

Figure 18: Case cohort identification for children who died with a learning disability

Following a review of a number of deaths where the reporting form had recorded the child had a learning disability, there was evidence that suggested that the child did not have a learning disability. Therefore, we made the decision to validate all deaths where the reporting form recorded a learning disability, to ensure the cohort was accurate and reflected an appropriate consistent definition of a learning disability.

Those where a learning disability was not identified were assumed not to be diagnosed and the death was included within the comparator group ‘children without a learning disability’.

Autism – cohort identification and exclusions

Deaths of children under 4 years were not included in this report due to difficulties in diagnosing a learning disability in younger children and to keep consistent with previous NCMD publications. To avoid confusion, the same approach was followed for the data on deaths of autistic children.

Children with autism were identified using a text search on all the information contained within the NCMD. This was because the statutory data collection forms do not include a question around whether the child was diagnosed with autism.

A list of key words [‘autism’, ‘autistic’, ‘ASD’, ‘aspergers’] was derived and all records within the timeframe were searched. These deaths were then reviewed by the NCMD team to confirm that the child was diagnosed with autism, and these deaths are those reported in Section 2.  Any deaths that mentioned suspected diagnosis/traits of autism, or where they were awaiting diagnosis, were recorded separately, but not included in the main analyses.

Those where autism was not identified were assumed not to be diagnosed and the death was included within the comparator group ‘children without autism’.

Data sources

ONS census data (2021) for 4–17-year-olds (or adjusted to represent the appropriate age group) were used as a comparator for the characteristics of the total population to provide context.

Data reported from CDOPs within the statutory child death data collection forms was used for this analysis. The child’s postcode of residence was linked to the Index of Multiple Deprivation for a measure of local deprivation, with a lower value suggesting greater deprivation.

Identification of underlying health conditions

Underlying health conditions were identified using a combination of data recorded in NCMD and through linking to Hospital Episode Statistics (HES) data using ICD-10 diagnosis codes (see Appendix 2) during inpatient hospital admissions. ICD-10 codes used to identify conditions using HES data is outlined in Appendices 2 and 3. These conditions reflect those that were diagnosed during previous hospital inpatient admissions and include conditions that may have caused the death. It is important to note that the child did not necessarily die of the underlying health condition. The list of conditions is not exhaustive but aims to show how frequently the conditions listed are diagnosed in children with a learning disability.

Contributory factors

Whilst completeness of at least one factor graded at a 2 (defined as ‘factors identified that may have contributed to vulnerability, ill health or death) was generally good (93%), numbers and proportions should be interpreted as a minimum. On some occasions, the factor could have been recorded with a relevance of 1 (defined as ‘no factors identified or factors identified but are unlikely to have contributed to the death’), and therefore not included within this report, or the factor may not have been recorded at all on the analysis form. The denominator used to calculate proportions of contributory factors present was the total number of reviews completed.

Other limitations

The NCMD is reliant on accurate data being inputted by professionals involved in submitting information for the child death review. The NCMD is reliant on accurate categorisation of death and recording of a learning disability by the CDOP. Due to small numbers and the lack of available data on the characteristics of children with a learning disability and autistic children within the general population, interpretation should be cautious.

4. References

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5. Appendices

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Appendix 1: Name and description for each category of death on the child death review analysis form in hierarchical order

Appendix 2: ICD-10 codes for specific conditions

Condition or Group ICD-10 codes
Asthma J45.0, J45.8, J45.9
Diabetes E10-E14, G59.0, G63.2, I79.2, M14.2, N08.3, O24, Y42.3
Epilepsy F80.3, G40.0-G40.4, G40.6-G40.9, G41, R56.8, Y46.0-Y46.6
Cerebral Palsy G80-G83
Oncology C00-C97, D33, D43, D44.4, D48
Congenital malformations, deformations, chromosomal abnormalities Q00-Q99
Congenital heart disease Q20-Q26, Q89.3
Trisomy 21 Q90.0, Q90.1, Q90.2, Q90.9
Life-limiting neurodisability A17, A81.0, F80.3 ,F84.2, G10 ,G11.1, G11.3, G12, G20, G23.0, G23.8, G31.8, G31.9, G35, G40.4, G40.5, G60.0, G60.1, G70.2, G70.9, G71.0, G71.1 ,G71.2, G71.3, G80.0, G80.8 ,G82.3, G82.4, G82.5 ,G93.4 ,G93.6, G93.7
Preterm P07 or CDOP recording of birth before 37 weeks gestation.
Birth trauma or asphyxia P10-P15, P20, P21

Source: https://www.rcpch.ac.uk/sites/default/files/CHR-UK_-_Retrospective_Epidemiological_Review_of_All-cause_Mortality_in_CYP.pdf

Appendix 3: ICD-10 codes for chronic conditions

Type of chronic condition Categories Codes
Mental health/behavioural Substance abuse E24.4, F10-F19, F55*, G24.0*, G31.2, G40.5, G62.1, G72.0, G72.1, I42.6, K29.2, K70,

K85.2, K85.3, K86.0, O35.4, R78.1*-R78.5*, Y47, Y49, Z50.2, Z50.3, Z71.4, Z71.5, Z72.2*, Z86.4

Self-harm X60-X84, Y10-Y34†, Y87.0, Y87.2†, Z91.5
Other mental health problems F00-F01, F02.8, F03-F09, F20-F48, F50, F53, F54, F59*, F60-F69, F99*, Z09.3*, Z50.4*, Z86.5, Z91.4*
Behavioural/developmental disorders F70-F79, F80.0-F80.2, F80.8, F80.9, F81-F84, F88, F89, F90-F98
Cancer/blood disorders Neoplasms C00-C97, D00-D02, D05-D09, D12, D13, D14.1-D14.4, D15, D20, D32-D35,

D37-D48, D63.0, E34.0, E88.3, G13.0, G13.1, G53.3, G55.0, G63.1, G73.1, G73.2,

G94.1, M36.0, M36.1, M49.5, M82.0, M90.6, M90.7, N08.1, N16.1, Y43.1-Y43.3, Y84.2, Z08, Z51.0-Z51.2, Z54.1, Z54.2, Z85, Z86.0, Z92.3

Immunological disorders D80-D84, G53.2, Q98.0
Anaemia and other blood disorders D50*, D56.0-D56.2, D56.4, D56.8, D56.9, D57.0-D57.2, D57.8, D58, D61.0, D61.9, D64*, D66, D67, D68.0-D68.2, D68.4-D68.9, D69, D70-D76, M36.2-M36.4, M90.4, N08.2, Z86.2
Chronic infections HIV B20-B24, F02.4, R75, Z21
Tuberculosis A15-A19, E35.0, K23.0, K67.3, K93.0, M01.1, M49.0, P37.0
Other A50, A81, B18, B37.1, B37.5, B37.6, B37.7, B38.1, B39.1, B40.1, B44.0, B44.7, B45,

B46, B48.7, B50.0, B50.8*, B51.0, B51.8*, B52.8*, B52.0, B55, B57.2-B57.5, B58.0, B59, B67, B69, B73, B74, B78.7, B90-B94, F02.1, K23.1, K93.1, M00, N33.0, P35.0-P35.2, P35.8, P35.9, P37.1

Respiratory Asthma and chronic lower respiratory disease J41-J47
Cystic fibrosis E84, P75
Injuries S17*, S27*, S28*, T27*, T91.4*
Congenital anomalies Q30-Q37, Q79.0
Other G47.3, J60-J70, J80-J86, J96.1, J98, P27, Y55.6, Z43.0, Z93.0, Z94.2
Metabolic/endocrine/ digestive/ renal/genitourinary Diabetes E10-E14, G59.0, G63.2, I79.2, M14.2, N08.3, O24, Y42.3
Other endocrine E00, E03.0, E03.1, E07.1, E22.0, E23.0, E25, E26.8, E29.1, E31, E34.1, E34.2, E34.5, E34.8, G13.2, G73.5, Y42.1
Metabolic D55, E70-E72, E74-E78, E79.1-E79.9,E80.0-E80.3, E80.5, E80.7, E83, E85, E88.0, E88.1, E88.2*, E88.8, E88.9, G73.6, L99.0, M14.4, M14.3, N16.3
Digestive K20, K21.0, K22, K23.8, K25-K28, K29.0, K29.1, K29.3-K29.9, K31, K50-K52, K55, K57, K59.2, K63.0-K63.3, K66, K72-K76, K80-K83, K85.0, K85.1, K85.8, K85.9,

K86.1-K86.9, K87.0, K90, M07.4, M07.5, M09.1, M09.2, T86.4, Z43.2-Z43.4, Z46.5, Z90.3, Z90.4, Z93.2-Z93.5

Renal/GU D63.8, G63.8, G99.8, I68.8, M90.8, N08.4, N00-N05, N07, N11-N15, N16.0, N16.2, N16.4, N16.5, N16.8, N18, N19, N20-N23, N25, N26, N28, N29, N31, N32, N33.8, N35, N36, N39.1, N39.3, N39.4, N40-N42, N70-N74, N80-N82, N85, N86*, N87,N88, P96.0, T82.4, T83.1, T83.2, T83.4-T83.9, T85.5, T86.1, Y60.2, Y61.2, Y62.2, Y84.1, Z49, Z93.6, Z94.0, Z99.2
Congenital anomalies of the digestive/ renal/GU system Q38.0, Q38.3, Q38.4, Q38.6-Q38.8, Q39, Q40.2, Q40.3, Q40.8, Q40.9, Q41,

Q42, Q43.1, Q43.3-Q43.7, Q43.9, Q44, Q45, Q50.0, Q51, Q52.0-Q52.2, Q52.4,

Q54.0-Q54.3, Q54.8, Q54.9, Q55.0, Q55.5, Q56, Q60.1, Q60.2, Q60.4-Q60.6,

Q61, Q62.0-Q62.6, Q62.8, Q63.0-Q63.2, Q63.8, Q63.9, Q64, Q79.2-Q79.5, Q87.8, Q89.1, Q89.2

Injuries S36*, S37*, S38*, S39.6*, S39.7*, T06.5*, T28*, T91.5*
Other/unspecific E66, G63.3, G99.0, M14.5, N92*, Z86.3, Z93.8
Musculoskeletal/skin Musculoskeletal/connective tissue G55.1-G55.3, G63.5, G63.6, G73.7, J99.0, J99.1, L62.0, M05, M06, M07.0-M07.3, M07.6, M08, M09.8, M10-M13, M14.0, M14.6, M14.8, M30-M35, M40-M43, M45- M48,M50-M54, M60-M62, M63.8, M80.1-M80.9, M81.1-M81.9, M82.1, M82.8,

M84.0-M84.2, M84.8, M84.9, M85, M86.3-M86.6, M89, M90.0, M91-M94, N08.5, Y45.4

Skeletal injuries/amputations S13*, S22.0*-S22.2*, S22.5*, S23*, S32*, S33*, S68.3*, S68.4*, S68.8*, S77*,

S78*, S87*, S88*, S97*, S98.0*, S98.2*-S98.4*, T02*, T04*, T05*, T20.3*, T20.7*, T21.3*, T21.7*, T22.3*, T22.7*, T23.2*, T23.3*, T23.6*, T23.7*, T24.3*, T24.7*, T25.2*, T25.3*, T25.6*, T25.7*, T29.3*, T29.7*, T30.3*, T30.7*, T31.2*-T31.9*, T32.2*-T32.9*, T87.3-T87.6, T91.2* T91.8*, T92.6*, T93.1*, T93.4*, T93.6*, T94.0*, T94.1*, T95.0*, T95.1*, T95.4*, T95.8*, T95.9*, Y83.5, Z89.1, Z89.2, Z89.5-Z89.8, Z97.1

Chronic skin disorders L10, L11.0, L11.8, L11.9, L12-L14, L28, L40-L45, L57, L58.1, L59, L87, L88, L90, L92, L95, L93, L98.5, M09.0, Q80, Q81, Q87.0-Q87.5, Q89.4
Congenital anomalies Q18.8, Q65.0-Q65.2, Q65.8, Q65.9, Q67.5, Q68.2, Q68.3*-Q68.5*, Q71-Q73, Q74,

Q75.3-Q75.9, Q76.1-Q76.4, Q77, Q78, Q79.6, Q79.8, Q82.0-Q82.4, Q82.9, Q86.2, Q89.7-Q89.9

Neurological Epilepsy F80.3, G40.0-G40.4, G40.6-G40.9, G41, R56.8, Y46.0-Y46.6
Cerebral palsy G80-G83
Injuries of brain, nerves, eyes or ears S05*-S08*, S12*, S14*, S24*, S34*, S44*, S54*, S64*, S74*, S84*, S94*, T06.0*-T06.2*, T26*, T90.4*, T90.5*, T91.1*, T91.3*, T92.4*
Chronic eye conditions H05.1-H05.9, H13.3, H17, H18, H19.3, H19.8, H21, H26, H27, H28.0-H28.2, H31, H32.8, H33, H34, H35, H40, H42.0, H43, H44, H47, H54.0- H54.2, H54.4, T85.2, T85.3, Z44.2
Chronic ear conditions H60.2, H65.2-H65.4, H66.1-H66.3, H69.0, H70.1, H73.1, H74.0-H74.3, H75.0, H80,

H81.0, H81.4, H83.0, H83.2, H90.0, H90.3, H90.5, H90.6, H91, Z45.3

Perinatal conditions P10, P21.0, P52, P57, P90, P91.1, P91.2, P91.6
Congenital anomalies of neurological or sensory systems Q00-Q07, Q10.4, Q10.7, Q11-Q12, Q13.0-Q13.4, Q13.8, Q13.9, Q14-Q16, Q75.0, Q75.1, Q85, Q86.0, Q86.1, Q86.8, Q90-Q93, Q95.2, Q95.3, Q97, Q99
Other F02.2, F02.3,G00-G09, G10-G12, G13.8, G14, G20-G23, G24.1-G24.9, G25-G30, G31.0-G31.1, G31.8, G31.9, G32-G37, G43-G46, G47.0-G47.2, G47.4-G47.9,

G50-G52, G53.0, G53.1, G53.8, G54, G55.8, G56-G58, G59.8, G60, G61, G62.0, G62.2-G62.9, G64, G70, G71,G72.2-G72.9, G73.0, G73.3, G90-G93, G94.2, G94.8,

G95, G96, G98, G99.1, G99.2, I60-I67, I68.0, I68.2, I69, I72.0, I72.5, T85.0, T85.1, Y46.7-Y46.8, Z98.2

Cardiovascular Congenital heart disease Q20-Q26, Q89.3
Other I00*-I28*, I31*-I39*, I41*, I42.0*-I42.5*, I42.7*-I42.9*, I43.0*, I43.1, I43.2*-I43.8*, I44.1*-I44.7*, I45.1*-I45.9*, I46*-I51*, I52.8, I70*-I71*, I72.1*-I72.4*, I72.8*, I72.9*, I73*-I77*, I79.0*, I79.1*, I79.8*, I81*-I82*, I98*-I99*, M03.6, N08.8, Q27, Q28, S26*, T82.0-T82.3, T82.5-T82.9, T86.2, Y60.5, Y61.5, Y62.5, Y84.0, Z45.0, Z50.0, Z94.1, Z95
Codes indicating non-specific chronic condition R62, R63.3, Z43.1, Z51.5, Z75.5, Z93.1, Z99.3

Source: https://www.rcpch.ac.uk/sites/default/files/CHR-UK_-_Retrospective_Epidemiological_Review_of_All-cause_Mortality_in_CYP.pdf

Appendix 4: Children with suspected autism

There were 37 children who died without an autism diagnosis but who were reported to have shown autistic traits and a further 24 children who were either awaiting or undergoing assessment for autism at the time of death. These deaths are not included within this section. Of these 61 deaths, 13 children had a learning disability (and are included in analysis in section 1).

The number of referrals to services for autism diagnostic assessment has significantly increased and there is currently a wait of up to 2 years for autism assessment. In December 2023, there were 102,020 patients aged between 0-17 years with an open referral for suspected autism, with 86,105 (84%) having a referral that had been open at least 13 weeks17.

Of the deaths where autism was suspected (n=61), 77% (n=47) were male, and the most common primary category of death recorded by CDOP was Suicide or Deliberate Self-Inflicted Harm (44%, n=27).

Appendix 5: Data tables

Table 1: Number of deaths of children aged 4 – 17 years with and without a learning disability between 1 April 2019 and 31 March 2022 (3 years), by characteristics

Deaths of children with a learning disability

(N=741)

Deaths of children without a learning disability

(N=1682)

Age group 741 1682
4 – 9 years 298 (40%) 445 (26%)
10 – 14 years 260 (35%) 508 (30%)
15 – 17 years 183 (25%) 729 (43%)
 
Sex 741 1678
Female 328 (44%) 643 (38%)
Male 413 (56%) 1035 (62%)
Ethnic Group 715 1599
Asian or Asian British 176 (25%) 205 (13%)
Black or Black British 50 (7%) 118 (7%)
Mixed 31 (4%) 83 (5%)
White 442 (62%) 1142 (71%)
Other 16 (2%) 51 (3%)
Deprivation 739 1667
1 (most deprived) 222 (30%) 473 (28%)
2 156 (21%) 328 (20%)
3 133 (18%) 317 (19%)
4 116 (16%) 296 (18%)
5 (least deprived) 112 (15%) 253 (15%)
Region of CDOP
East Midlands 75 (10%) 157 (9%)
East of England 71 (10%) 208 (12%)
London 107 (14%) 263 (16%)
North East 36 (5%) 95 (6%)
North West 91 (12%) 206 (12%)
South East 121 (16%) 252 (15%)
South West 62 (8%) 137 (8%)
West Midlands 98 (13%) 199 (12%)
Yorkshire and Humber 80 (11%) 165 (10%)

 

Table 2: Number of deaths of children aged 4 – 17 years with and without a learning disability between 1 April 2019 and 31 March 2022 (3 years), by place of death

Deaths of children with a learning disability

(N=738)

Deaths of children without a learning disability

(N=1668)

Place of death  
Home 212 (29%) 528 (32%)
Hospice 83 (11%) 87 (5%)
Hospital 415 (56%) 738 (44%)
Public place 7 (1%) 242 (15%)
Other1 21 (3%) 73 (4%)

1Includes deaths abroad, in a school, holiday residences and other private residences

Table 3: Number of deaths of children aged 4 – 17 years with and without a learning disability between 1 April 2019 and 31 March 2022 (3 years), by CDOP primary category of death

Deaths of children with a learning disability

(N=740)

Deaths of children without a learning disability

(N=1682)

Primary category of death  
Deliberately inflicted injury, abuse or neglect 10 (1%) 69 (4%)
Suicide or deliberate self-inflicted harm 7 (1%) 344 (20%)
Trauma and other external factors 18 (2%) 230 (14%)
Malignancy 37 (5%) 541 (32%)
Acute medical or surgical condition 131 (18%) 184 (11%)
Chronic medical condition 191 (26%) 85 (5%)
Chromosomal, genetic and congenital anomalies 260 (35%) 121 (7%)
Perinatal/ neonatal event 19 (3%) 1 (0%)
Infection 53 (7%) 71 (4%)
Sudden unexpected, unexplained death 14 (2%) 36 (2%)

Table 4: Number of deaths of children aged 4 – 17 years with and without a learning disability between 1 April 2019 and 31 March 2022 (3 years), by underlying health conditions

Deaths of children with a learning disability Deaths of children without a learning disability

 

Linked data available 696 1457
Number of chronic conditions
0 7 (1%) 348 (24%)
1 3 (0%) 114 (8%)
2 7 (1%) 103 (7%)
3 21 (3%) 118 (8%)
4 18 (3%) 135 (9%)
5 30 (4%) 122 (8%)
6 36 (5%) 102 (7%)
7 38 (5%) 98 (7%)
8 51 (7%) 86 (6%)
9 66 (9%) 75 (5%)
10+ 419 (60%) 156 (11%)
Specific conditions*
Asthma 90 (13%) 169 (12%)
Diabetes 23 (3%) 34 (2%)
Epilepsy 497 (71%) 194 (13%)
Malignancy 50 (7%) 525 (36%)
Congenital malformations, deformations, chromosomal abnormalities 542 (78%) 325 (22%)
     Congenital heart disease 165 (24%) 106 (7%)
     Trisomy 21 29 (4%) 2 (0%)
Life limiting neurodisability 621 (89%) 291 (20%)
     Cerebral palsy 342 (49%) 126 (9%)
Preterm 187 (27%) 125 (9%)
Birth trauma or asphyxia 94 (14%) 88 (6%)

Source: Hospital Episodes Statistics. ICD-10 codes used for classification in Appendix 2 and 3

*More than one condition may have been identified for each child death and therefore figures will not sum to the total

Table 5: Number of deaths of autistic and non-autistic children aged 4 – 17 years between 1 April 2019 and 31 March 2022 (3 years), by characteristics

Deaths of autistic children

(N=77)

Deaths of non-autistic children

(N=2346)

Age group
4 – 9 years 14 (18%) 729 (31%)
10 – 14 years 20 (26%) 748 (32%)
15 – 17 years 43 (56%) 869 (37%)
Sex 77 2341
Female 15 (19%) 956 (41%)
Male 62 (81%) 1385 (59%)
Ethnic Group 75 2239
White 63 (84%) 1521 (68%)
Asian, Black, Mixed or Other 12 (16%) 718 (32%)
Deprivation 77 2329
1 (most deprived) 18 (23%) 677 (29%)
2 19 (25%) 465 (20%)
3 14 (18%) 436 (19%)
4 6 (8%) 406 (17%)
5 (least deprived) 20 (26%) 345 (15%)
Region of CDOP 77 2346
East Midlands 9 (12%) 223 (10%)
East of England 12 (16%) 267 (11%)
London 9 (12%) 361 (15%)
North East 2 (3%) 129 (5%)
North West 10 (13%) 287 (12%)
South East 17 (22%) 356 (15%)
South West 3 (4%) 196 (8%)
West Midlands 9 (12%) 288 (12%)
Yorkshire and Humber 6 (8%) 239 (10%)

 

Table 6: Number of deaths of autistic and non-autistic children aged 4 – 17 years between 1 April 2019 and 31 March 2022 (3 years), by place of death

Deaths of autistic children

(N=76)

Deaths of non-autistic children

(N=2330)

Place of death  
Home 21 (28%) 719 (31%)
Hospital 33 (43%) 1120 (48%)
Public place 16 (21%) 233 (10%)
Other 6 (8%) 258 (11%)

Table 7: Number of deaths of autistic and non-autistic children aged 4 – 17 years between 1 April 2019 and 31 March 2022 (3 years), by CDOP primary category of death

Deaths of autistic children

(N=77)

Deaths of non-autistic children

(N=2345)

Primary category of death
Deliberately inflicted injury, abuse or neglect 0 (0%) 79 (3%)
Suicide or deliberate self-inflicted harm 27 (35%) 324 (14%)
Trauma and other external factors 8 (10%) 240 (10%)
Malignancy 19 (25%) 559 (24%)
Acute medical or surgical condition 10 (13%) 305 (13%)
Chronic medical condition 6 (8%) 270 (12%)
Chromosomal, genetic and congenital anomalies 6 (8%) 375 (16%)
Perinatal/ neonatal event 0 (0%) 20 (1%)
Infection 0 (0%) 124 (5%)
Sudden unexpected, unexplained death 1 (1%) 49 (2%)

Table 8: Number of deaths of autistic and non-autistic children aged 4 – 17 years between 1 April 2019 and 31 March 2022 (3 years), by underlying health conditions

Deaths of autistic children

 

Deaths of non-autistic children
Linked data available 66 2087
Number of chronic conditions
0 15 (23%) 340 (16%)
1 3 (5%) 114 (5%)
2 6 (9%) 104 (5%)
3 2 (3%) 137 (7%)
4 4 (6%) 149 (7%)
5 6 (9%) 146 (7%)
6 4 (6%) 134 (6%)
7 4 (6%) 132 (6%)
8 4 (6%) 133 (6%)
9 5 (8%) 136 (7%)
10+ 13 (20%) 562 (27%)
Specific conditions*
Asthma 10 (15%) 249 (12%)
Diabetes 0 (0%) 57 (3%)
Epilepsy 17 (26%) 674 (32%)
Malignancy 19 (29%) 556 (27%)
Congenital malformations, deformations, chromosomal abnormalities 17 (26%) 850 (41%)
Life limiting neurodisability 12 (18%) 900 (43%)
Preterm 8 (12%) 304 (15%)
Birth trauma or asphyxia 8 (12%) 174 (8%)

Source: Hospital Episodes Statistics. ICD-10 codes used for classification in Appendix 2 and 3

*More than one condition may have been identified for each child death and therefore figures will not sum to the total