This is a guest post from a parent. She is concerned about the high numbers of children with autism entering the care system and considers what the explanation is for this. Are the professionals working in the CP system as well informed as they need to be? Does the failure to identify autistic children in care lead to bad decisions being made for them?
My son entered Care in his teens during a deep crisis when he was given an autism (ASD/ASC) diagnosis. When he entered Care it was devastating for our family but I was comforted that ‘the experts’ were now supporting him. It took a while to realise that, when trying to help him, 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 his needs in their practice but if my son were to make decisions about where to live or what to do with his life post-18, how could he be expected to make informed decisions without professionals meeting his communication needs and understanding how to adjust their practice to address the core features of autism? I was shocked 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. Their practice also needed to take account of ‘theory of mind’ difficulties and very high anxiety levels when faced with uncertainty (eg delayed decision making about placements etc) or attempts to ‘control’ rather than ‘agree’.
I began to read widely about the Care system and eventually concluded based on what we know about the difficulties of children in care around behaviour and poor mental health that there are likely to be much higher numbers of autistic children in Care than generally acknowledged and that these children are largely invisible in policy or research into the Care system. There are well known links between being in Care and entering prison and having a learning disability. Young people entering prison are also screened for traumatic brain injuries and cognitive difference, unlike children entering Care who are only screened for ‘emotional and behavioural problems’. Training or continuing practice development for social workers, independent reviewing officers, solicitors, CAFCASS officials around disabilities is minimal.
Evidence for much higher numbers of children in Care with autism than in their equivalent non looked after cohort of peers has begun to emerge. A recent study has identified variance between local authorities in the numbers of children in Care with an autism diagnosis from 0% to 12% of its looked after children. Recent clinical studies of adoptive children have also identified high numbers of adopted children with undiagnosed autism. 27% of the sample group were assessed as autistic (10%) or having significant autistic traits (17%)
Possible reasons for high numbers of autistic children in/from Care, many without diagnosis?
These are some thoughts: –
• Acknowledged difficulties accessing appropriate support where 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.
• Children with behavioural difficulties (anti-social, unsafe and violent) may come to the notice of social care and other professionals and these behaviours can overshadow a undiagnosed child’s difficulties. Problems with multi-agency working means there are few routes to ‘late diagnosis’ for the child.
• 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 who do not have 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.
• Autistic parents have an increased probability of having autistic children and may have high levels of vulnerability and inadequate support to enable them to an increase their parenting capacity leading to their children entering Care as a result of neglect.
• Autistic mums of autistic children’s have a natural inclination to ‘tell truth to power’ and other traits that could easily be misunderstood as non-engagement with 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.’’
• Many professionals have training in child-development that focuses almost exclusively on attachment theory. Attachment theory is ‘normative’. It does not acknowledge that a child’s development may deviate from the norm for many reasons including genetic inheritance, pre and post-natal substance and medicine exposure, post birth accident or illness for example. Linked to this, experts have identified a phenomenon of over-diagnosis of attachment difficulties as a result of the ‘allure of diagnosis of rare disorders in maltreated children’.
• 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 they have very close links with experienced clinical support. .
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?
At the very least a failure to identify autistic children within Care points to uninformed decision-making about children at the edge of and within Care and this uninformed decision making is likely to be a considerable factor in poor outcomes for many children who enter Care.
Evidence of under-identification of autistic children within Care is also a damming indictment of health care provision for looked-after-children.
It also raises the possibility that some children with both diagnosed and undiagnosed autism have been 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.
What needs to change?
The implications for the Care system are profound.
It is likely to impact:
- Policy, training and practice at the ‘edge of Care’ –various professionals and settings.
- Policy and training and practice within Care –various professionals and settings.
and raises many questions including:-
What does good support look like for autistic children in Care given their greatest need is likely to be around ‘placement’ stability rather than around education as would be the case for most other autistic children?