Research conducted by the University of Manchester (Green et al 2016), has suggested that autism may be under recognised in adoption and may be far higher than the general population or even the population of children in care, where it is, with significant variances between authorities (0-13%), estimated to be around 3% (according to FOI requests). The Manchester study of 60 domestically adopted children found 10% prevalence of autism and a further 17% of children who showed significant autistic traits.
This post is from a mother, who is not an adoptive parent. We felt the challenges faced by this mother had so many resonances with many of our own cases, and wanted to include it for this reason.
Further links and resources in relation to autistic children in care can be accessed at this website: http://childprotectionautisticchild.weebly.com/
Here is a further case, which has resonances with the experiences adoptive families, in that help can be hard to achieve and the family, including siblings in this case, can be put under great pressure.
My child entered Care in his teenage years during a deep crisis when she was given an autism (ASD/ASC) diagnosis. When she entered Care it was devastating for our family but I was comforted that ‘the experts’ were supporting him within Care. It took a while to realise that, when trying to help, experienced and committed social workers had very little to fall back on in terms of training about understanding what it means to be autistic.
It may seem unreasonable that I expected hard-pressed professionals to take account of my child’s needs in their practice but if she was to be expected to make decisions about where to live or what to do post-18, how could she be expected to make informed decisions without professionals meeting communication needs and understanding how to adjust their practice to address the core features of autism? I was, for example, very taken aback that there seemed little appreciation that an autistic person without a learning disability is likely to have these needs, irrespective of the number of words in his/her vocabulary or ability to repeat the words of professionals to other professionals. It also seemed to me that most professionals practice did not address my child’s ‘theory of mind’ difficulties and very high anxiety levels when faced with uncertainty for example around delayed decision-making or in advance of key meetings.
I started to read widely about the Care system and discovered that children with disabilities including autism are largely invisible in policy for and research into the Care system itself. We do however know that children in Care have high levels of need and difficulties around behaviour and poor mental health. There are also identified links between being in Care, entering prison and having a learning disability however young people entering prison are screened for traumatic brain injuries and cognitive difference, unlike children entering Care who are only screened for emotional and behavioural difficulties and these can be manifestations of cognitive difference. This raises many questions such as – if children entering Care were assessed for cognitive difference, what would this tell us about the needs of the child? If information on a child’s cognitive difference informed their support in all spheres of education, care and health, what would be the affect on the Care system overall?
Evidence for much higher numbers of autistic children in Care than in their equivalent non-looked-after cohort of peers is now beginning to emerge. A recent Freedom of Information exercise of 145 English Local Authorities (1) identified variance between local authorities in the numbers of their looked-after-children with an autism diagnosis from 0% to 12.7 %. The percentage rate in the general population is circa 1% and the generally accepted % rate quoted by those working in the Care system is somewhere between 2-3%. Clinicians specialising in neuro-disabilities such as autism have suspected for some time that this is likely to be a significant underestimate of true numbers. A recent clinical study of 60 domestically adopted children (2) has identified high numbers of autistic children among the children assessed as part of their study. 27% of the sample group were assessed as either autistic (10%), or having significant autistic traits (17%). This raises more questions – why would there be high numbers of autistic children in/from Care and why might there be considerable under-diagnoses in the Care system overall?
Possible reasons for high numbers of autistic children in/from Care, many without diagnosis.
These are some thoughts: –
- Acknowledged difficulties accessing appropriate support when children have a diagnosis may lead to extreme crises within families particularly as a child reaches adolescence and unsupported autistic children may develop poor mental health and extreme behavioural difficulties. (3)
- Children with behavioural difficulties (anti-social, unsafe and violent) may come to the notice of social care and other professionals and these behaviours may overshadow an undiagnosed child’s difficulties. Difficulties with multi-agency working in many areas means there are few routes to ‘late diagnosis’ for an autistic child.(4) Training and continuing practice development about disabilities for social workers, independent reviewing officers, solicitors, CAFCASS officials and others involved in the care system is widely acknowledged to be poor.
- On entering Care, guidance for clinicians carrying out looked-after-children’s health checks promotes an approach where disabilities including autism are seen in the context of educational need so autistic children without learning disabilities are not systematically ‘picked up’ and diagnoses for non-school age children are not identified because a toddler has no educational need. The list of conditions that health professionals should be alert to does not include autism.
Health Assessments should…pay particular attention to health conditions that may be more prevalent in looked-after children (such as foetal alcohol syndrome or attachment difficulties) and which may otherwise have been misdiagnosed. (5)
- Autistic parents have an increased probability of having autistic children and some may have high levels of vulnerability and/or inadequate support to enable them to parent successfully leading to their children entering Care(6).
- Autistic mums of autistic children have a natural inclination to ‘tell truth to power’ and other traits that could easily be misunderstood as non-engagement/confrontational by professionals.
“I understand that my autism makes me a difficult person to deal with: I don’t know when to back off when I know I’m right. Maybe I can’t always look people in the eye, so perhaps I come over as being shifty. Autistic people do hyper-focus, but they mistook my obsession as a sign I was unstable.’’ (7)
- Many professionals have training in child-development that focuses almost exclusively on attachment theory.(8) Attachment theory is a theory concerned mainly around how a developing baby learns how to regulate emotions when they feel safe and form a very close bond with a care-giver, usually a mother. It does not acknowledge that a child’s development, including cognitive (rather than emotional) development, may deviate from the norm for many biological reasons including genetic inheritance, pre and post-natal substance and medicine exposure, post birth accident, malnutrition or illness as just some examples. Linked to this, experts have identified a phenomenon of over-diagnosis of attachment difficulties in children in, from or at the edge of Care, as a result of the ‘allure of diagnosis of rare disorders in maltreated children’ (9)
- The Care system is a safety net for abused and neglected children. Extreme maltreatment of children may cause neuro-developmental disabilities including ‘quasi autism’. This is not developmental delay, as sometimes referred to, but developmental disability/difference. (2)
- Professionals may see vulnerability/ difference of autistic child or parent and worry about the child. When it comes to working with ‘autism families’ they do not have any context to’ fit this worry within’ unless for example, they have very close links with experienced clinical support prepared to spend time with families, including spending time in their homes. (10) Professionals are likely to be short of time and resources and risk-averse so may ‘err on the safe side’ by removing autistic children.
Should professionals involved in Child Protection be concerned?
Very high numbers of autistic children in Care should raise serious concerns that some autistic children are being removed from loving families who with earlier diagnosis, more understanding and targeted help could have delivered better outcomes for their children without needing the State to intervene within a family in the most draconian way imaginable.
A failure to identify autistic looked-after-children also points to uninformed decision-making about these children and this uninformed decision making is likely to be a factor in poor outcomes for many children who enter Care.
What needs to change?
See (11) and (12)
What don’t we know?
The most pressing questions for me are these:-.
- What does good support look like for autistic children at the edge of Care and within Care given their greatest need is likely to be around placement stability rather than around education as would be the case for most autistic children?
- What does good support as a Care leaver look like given that Autism is a life-long disability and autistic people have a spectrum of abilities?
- How do we ensure that autistic children/young people in/from Care get the support that is right for him?
What will change if we get it right?
I believe that if the Care system can rise to the challenge of identifying and correctly supporting autistic children at the edge of Care and within Care, it will be transformative for the Care system itself. It will be smaller and will better meet the needs of autistic children who enter it. That surely has to be the goal of all working in the area of child protection and with children in need, for those who care for them and for policymakers concerned with, among other things, the rising cost of rising numbers of children entering Care.
- Children and Young People Now (2017) Councils failing to identify autistic children in Care, research warns [ http://www.cypnow.co.uk/cyp/news/2003643/councils-failing-to-identify-autistic-children-in-care-research-warns ]
- Green J, Leadbitter K, Kay C, Sharma K (2016) Autism Spectrum Disorder in Children Adopted After Early Care Breakdown [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4786596/]
- Children and Young People Now (2017) Autistic young people struggle to access mental health support [http://www.cypnow.co.uk/cyp/news/2003831/autistic-young-people-struggle-to-access-mental-health-support ]
- The Star (2015) Heffield doctor’s fight to keep care home kids from life of crime [http://www.thestar.co.uk/news/heffield-doctor-s-fight-to-keep-care-home-kids-from-life-of-crime-1-7387596 ]
- DfE, DH (2015) Promoting the Health and Wellbeing of Looked After Children [https://www.gov.uk/government/publications/promoting-the-health-and-wellbeing-of-looked-after-children–2]
- Bristol University (2007, 2016) Working Together with Parents Network (WTPN) update of the DoH/DfES Good practice guidance on working with parents with a learning disability [http://www.bristol.ac.uk/media-library/sites/sps/documents/wtpn/2016%20WTPN%20UPDATE%20OF%20THE%20GPG%20-%20finalised%20with%20cover.pdf]
- The Guardian (2017) Mothers with Autism, ‘I mothered my children in a very different way’ [https://www.theguardian.com/lifeandstyle/2017/apr/15/women-autistic-mothers-undiagnosed-children]
- Wells K (2015) Attachment Theory-The Basics [http://childprotectionresource.online/tag/attachment-theory/ ]
- Woolgar M, Baldock E (2015) Attachment disorders versus more common problems in looked after and adopted children: comparing community and expert assessments [https://www.acamh.org/content/attachment-disorders-versus-more-common-problems-looked-after-and-adopted-children-comparing]
- Community Care (2002) Living with Aspergers [http://www.communitycare.co.uk/2002/07/10/living-with-aspergers/ ]
- Anonymous, Russell S, (2016) Children and Social Work Bill, Evidence in support of Amendment 57 c [https://www.sallyrussell.co.uk/single-post/2016/08/25/Supporting-young-people-in-care]
- Anonymous (2017) Written evidence submitted by a parent of a child in care with Asperger Syndrome/ASC (CSWB 01) [https://www.publications.parliament.uk/pa/cm201617/cmpublic/ChildrenSocialWork/memo/CSWB01.pdf ]