I am grateful to this post from one of CPR’s readers, who is parent to an autistic child. She writes about her difficulties in getting help and support for her son and the problems families experience in a system which does not seem set up to identify difficulties and offer support. What happens when children with difficulties arising out of their undiagnosed disabilities are mis-identified as children suffering from parental neglect or abuse?
As she comments:
As it stands, the Child Protection system is a blunt and sometimes cruel instrument often used without much prospect of bringing about positive change because it can only ever work as one part of a system of support for families, and this system of support is largely absent.
Not having met a social worker in our local authority until the day my son with an Asperger Syndrome diagnosis entered Care under section 20 of the Children’s Act 1989, I began to read anything I could find about children with his profile who enter Care. That was the day I accepted that having tried everything else, Care was the only option available to get an integrated package of support for him, something we and he had needed by any measure for some time. He was not going to be someone ‘who didn’t fit within our services’ remit’ nor just another statistic of a disabled young person living rough with poor mental health or worse, something that seemed almost inevitable at that time, without trying everything including Care.
As part of my coping mechanism for the immense grief and desolation I was experiencing, I read report after report to learn about the Care system. Eventually, to cut down on my reading, I’d open reports and papers in pdf format and search within the document with the search facility using terms like ‘disabled, disability, autism, neuro-developmental, ASD, ASC’ and might get one ‘hit’. What I did notice was that if I carried out the same search using ‘neglect’ as a search term I’d get scores of ‘hits’ within the same document. I concluded that for social workers ‘neglect’ was ‘sexy’ and disability anything but. Children like mine, with an autism diagnosis but without an obvious learning disability were a bit of a side show while all the action in Child Protection was around ‘abuse and neglect’ and that didn’t seem to be up for discussion. There were a few reports like the excellent ‘Unprotected, Overprotected’ that made links between disability and core child protection issues but generally these reports were few and far between.
If one looked a little wider to the family unit with an autistic or learning disabled family member there seemed to be almost nothing in terms of research into how to support families with complex difficulties around neuro-disability including poor mental health, different ways of thinking and processing information, mental inflexibility and the need for extreme control to manage anxiety as just some examples.
I came to loathe the word ‘neglect’, surely the reasons why children enter care are multi-faceted yet this word is so un-nuanced and brings with it a mountain of stigma, shame and blame for parents.
One of the things that also became apparent to me, was that there seemed to be a lot of children with extreme difficulties within Care. When I asked why our son hadn’t a social worker from The Children with Disabilities Team I was told they only took on cases of children with multiple and complex disabilities and they had a very full caseload. Similarly when I asked why his case did not have clinical oversight, (something that eventually did come) I was told ‘’All our children have the same kinds of difficulties’. My response was ‘’well, are they being given autism assessments?’’ The answer to that question ( yet more reading..) was that ‘no, children who enter Care are not assessed or even screened for autism – all their difficulties (they are most commonly described as having developmental delay not disability and/or traumatised with poor mental health) unquestionably stem from ‘’neglect and/or abuse by parents prior to entering Care’’. Well that is not my experience so..?
I eventually came to the conclusion that assessments and healthcare for children in Care are not remotely up to the task of meeting the needs of a sizable number of children who are in Care, many with undiagnosed hidden disabilities. There is almost no data collected on children in Care with disabilities and we do not know how many are diagnosed as being autistic before they enter Care or within Care although we know from 2017 Freedom of Information requests there is considerable local variation in their numbers from 0% (Calderdale) -to 12.7% (Walsall). Surely this is Corporate Neglect and why were Child Protection professionals / CQC / Ofsted not making that point? Obviously some types of neglect are more ’sexy’ for professionals working in Child Protection than others.
There are some other troublesome issues around ‘neglect’
I’ve recently being made aware of this project. Identifying and Understanding Inequalities in Child Welfare Intervention Rates. It is worth watching the You tube video associated with the link as it identifies that in a poor neighbourhood within a wealthy borough there are a lot more children on child protection plans than in a poor neighbourhood in a poor borough. Surely ‘abuse is abuse’ and ‘neglect is neglect’ so how to explain this? Assuming ‘abuse’ is an absolute, maybe the concept of ‘neglect’ is a relative one, so one person’s/team’s idea of neglect is not another’s? I’ve a working lifetime of experience where I’ve learned to never ask anyone in a local authority whether they would like to be involved in decision making unless it falls within their strictly defined statutory remit and I check that myself first rather than asking. This is because I have found that many are tempted to try and control things they have no statutory remit for and ‘it is best not to invite trouble’. This is certainly not unique to people who work in Local Authorities just that when asked for our opinions, most of us have difficulties not telling people what they should be doing based on our own likes/dislikes/perspectives. When it comes to Child Protection, where there is a huge power imbalance and a very diffuse remit, I think this can enter some really dangerous territory.
Take this situation where there are concerns about abuse and neglect by parents of their autistic children :-
‘’ Some families may feel that they accept their child for who they are and allow them to withdraw from the world. Is that neglect? Many people with autism need to have structure and routine in their lives to cope with an unpredictable world. Some parents may allow this to take over and dictate the lives of the whole family, others may rally against it, believing it’s in the child’s best interest for them not to give way to the structure. Is this abuse?
There are many different therapies and interventions available which claim to cure autism. Some of these practices can in themselves ‘appear’ abusive. Some parents pursue these out of desperation and when the claims for some of these therapies and interventions are far from clear, it can be difficult for parents to know what to believe’’
If social workers working with children have little training about autism, are they really able to make decisions about what constitutes ‘neglect’ when it comes to this group? What if an autistic child doesn’t t have a diagnosis because clinicians do not have resources to carry out specialist assessments? If they do not have very good multi-disciplinary working arrangements that can quickly identify the reasons for a child’s difficulties and help build the child’s capacity, ,not just focus on questions about the parent’s fitness to parent, are they likely to get this right?
Where is the discussion about this in Child Protection circles and if decision-making is wrong why is that not abuse? It is absolutely foreseeable and mostly preventable with good training and good multi-disciplinary working arrangements around diagnosis.
Which brings me to ‘Edge of Care’ support for autistic children.
Autism is a spectrum condition and a child’s difficulties can present in many ways. One of the most difficult to explain is that a child who is very bright and no trouble in school can have extreme difficulties in processing what is happening around them and may develop very poor mental health particularly around anxiety. See this National Autism Society video explaining how autistic children who have acute difficulties such as these, may end up in secure or forensic settings.
The tone is very much ” Their parents never taught them and because of this..” My response to that would be ”Give parents the tools to help their autistic children and most will.” Autistic children need an autism diagnosis (my son got his at 16 in the most horrendous circumstances) and parents need support (we got none). I also believe billions of pounds of cuts are purposefully being made to Children’s Services, legal aid and the NHS with an unspoken acceptance that naive carers/parents in desperate circumstances will find it almost impossible to access support for themselves and their children. Many pathways to support exist in name only, are supposed to be provided by the market via brokerage or self-funding or unfunded charities, are initiatives or time limited programmes that quietly disappear, unlike the fanfare around their introduction. Services where they exist are understaffed and complaints/appeals processes so difficult to negotiate that only the most committed, resourceful and able persist. All, including professionals who have to somehow work in this environment whilst retaining their own humanity, understand this, so is this the ‘neglect and abuse’ that Child Protection Professionals are concerned about? Maybe.
I could go on and on..
As you will have gathered my own ‘special interest’ is around children who are autistic. See this piece http://www.bbc.co.uk/news/health-41345647
”About 20,000 children have been harmed by valproate medicines in the UK since the 1970s. The medicines regulator said the drug had been kept under constant review. Babies exposed to the drug in the womb have a 40% risk of developing autism, low IQ and learning disabilities.” —Almost 70% of women surveyed about a powerful epilepsy drug have not received new safety warnings about the dangers of taking it during pregnancy.”
Anyone interested in the law may already know that a number of years ago, legal aid was withdrawn to families trying to take a case against the drug’s manufacturer and it could not proceed. Since then children continued to be born with abnormalities and some died, as a result of their mothers taking this drug without being aware of the risks, causing unimaginable and completely preventable suffering to children. Is that ‘neglect’ by the State? Can it get any more serious if so?
Or is this the kind of ‘neglect and abuse’ that the United Nations has called for action on, United Nations criticises treatment of disabled children in the UK that concerns Child Protection professionals?
These are rhetorical questions in the main because although Child Protection professionals refer to preventing ‘abuse’ and ‘neglect’ of children what they really mean is intervening in families that are experiencing difficulties with the mind-set that children’s difficulties stem from neglectful or abusive parenting. The reality is that it isn’t possible for parents or professionals to nurture children particularly children with high needs, without the State taking an active role in supporting and protecting families.
As it stands, the Child Protection system is a blunt and sometimes cruel instrument often used without much prospect of bringing about positive change because it can only ever work as one part of a system of support for families, and this system of support is largely absent. I think families are a huge resource – painting us as incompetent, neglectful, not to be trusted, ignorant etc. is just so damaging for our children. My son didn’t need rescuing. We needed to be listened to and we needed help. That our son had to enter Care to get it is my idea of what constitutes ‘neglect’.
Further Reading
NHS (2017) Developing Support and Services for Children and Young People with a learning disability, autism or both ”The Department for Education supports the development of the work undertaken in the Transforming Care Partnership Boards and encourages local authorities to pay regard to this guidance”
Tizard, Challenging Behaviour Foundation (2017) Developing Better Commissioning for Individuals with behaviour that challenges services – A scoping exercise.
The Children Act 1989 – deeply flawed legislation?