Autistic Children In Care – uninformed decision making leading to poor outcomes.

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:

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?

 

16 thoughts on “Autistic Children In Care – uninformed decision making leading to poor outcomes.

  1. Sam

    I do hope that sufficient attention is paid to this beautifully written article by professionals and they start to look at how they deal with children with autism.

    Reply
  2. Angelo Granda

    A PARENT’S VIEW

    Re-the question in your final paragraph.

    What does good support look like for autistic children?

    Autistic youngsters are special needs and the care they require is SPECIAL. Not ‘good enough’ care nor ‘better than good enough’ care or anything else.
    The definition of special care is that parents must involve themselves with SPECIAL NEEDS professionals as referred to and appointed by a COMMUNITY SPECIAL NEEDS PAEDIATRIC CONSULTANT ( or adult consultant when the child reaches 18). If those special needs staff ( who include behavioural psychologists, speech and language therapists, educational psychologists, special needs nursery and school staff, portage workers, child development specialists, medical social workers, continence advisers et al , an autistic youngster will show slow but steady progress. Respite care is an essential to any care-plan for the autistic.
    Should the LA not seek the advice of these professionals and merely make its own decisions with the advice of CAMHS and its own LAC professionals then it is providing ‘ less than good enough’ care. If the LA takes a special needs child away from its family and all its existing special needs carers , appoints new non-specialist doctors for them , refuses to consult parents and previous carers when making welfare decisions etc. and puts them in a non-special needs foster placement and gives false medical information and details to schools and the new doctors then ,in my opinion, it is guilty of gross neglect and deserves condemnation accordingly.
    When it fails to follow Working Together frameworks and later when it fails to follow the terms of a care-order by ignoring ( not consulting parents) and when it fails to follow LAC review procedures scrupulously, they are act in criminal contempt of the law.
    When parents complain or when children complain, no-one listens. This is because lawyers don’t understand special needs, autism etc. and rely on the LA Social Worker ‘experts’.

    All comments welcome.

    Reply
  3. looked_after_child

    It has links to many resources and support organisations.

    Key points:-
    • Keep a record of interactions and write notes on conversations.
    • Keep a diary of events.
    • Email your notes of the conversations with professionals so there is a written record.
    ( This was essential for one parent as they could prove what they had done to share their concerns and work with professionals; they were able to put together an email chronology to evidence their attempts to seek help and work with professionals.)
    • Bring someone to support you to appointments or at meetings e.g. so you are not on your own and they can also take notes for you. It is also helpful to have someone to debrief with who is not as emotionally involved as you are.
    • However you feel, don’t get angry at professionals or the social worker. You being critical of other professionals, angry at the social worker or refusing to talk to them, supports the picture they have been given. Give the social worker information and evidence to support what you say. E.g. copies of medical letters, diagnosis letters. Find out how much they know about special needs and ask for assessments to be carried out by someone with training in specific areas e.g. disability, mental health or ASD.
    • Make sure the Social Worker has contact details for everyone involved and if a child protection conference is called then ask (and double check) that everyone you want to be there is invited. This is important if there are people who have evidence to support you.
    • Look at getting a referral for an independent advocate for you and / or your child. They will take your child views and ensure that they are put forward and accurately recorded in any formal meetings.
    • Make sure you see copies of professional’s reports (again being aware of expected timescales is useful). Do correct factual errors in reports in writing. Don’t correct opinions you don’t like, unless you can state evidence (preferably in writing) to support your alternative view.
    • Be careful what you post on social media. Social media gives you access to brilliant support groups but please be aware that what you post is not anonymous or confidential and personal information can be shared. They are a great source of support so do use them to ask for help but then hold your detailed personal conversations in private messages rather than in a public forum.
    • If you suspect that you may have undiagnosed social communication difficulties which are contributing to the situation (which is not really surprising if there is ASD within the family) then getting your own diagnosis may be helpful so you can be supported rather than misunderstood.
    • Trying to stay calm, honest, and communicate openly against this background is very difficult. Our advice is please don’t try to be anything other than yourself.
    • Being in the middle of any allegation is very stressful. Do make sure you look after yourself (eat, sleep, rest, self-care and keep your daily routine). If your mental health declines, this is not going to help how you are seen by professionals, who are at this point looking for evidence that you are unstable. You may well be frightened, ashamed or embarrassed about this situation. Tell people you trust.

    ..bear in mind this is a post from parents of special needs children to other parents of special needs children. Something has to be going very wrong when if your child has a disability you need to be able to show you are not to blame…

    Financial cost of :- A bit of understanding and humanity – £0

    Here are a few resources for professionals to learn ( more?) about autistic people:-
    • The Basics –
    RCPsych (2017) Autism and Asperger’s syndrome: information for parents, carers and anyone who works with young people http://www.rcpsych.ac.uk/healthadvice/parentsandyouthinfo/parentscarers/autismandaspergerssyndrome.aspx
    • Everything you could ever want to know about Autism in one very accessible site. –
    Royal College of General Practitioners (2016) the College has produced an Autistic Spectrum Disorders toolkit: a ‘one stop shop’, guide to autism for primary care professionals, people affected by autism, clinical commissioning groups, as well as interested members of the public.
    • A Parent Carer’s Perspective –Yvonne Newbolt
    http://yvonnenewbold.com/vlogs/autism-what-it-is-and-how-we-can-all-better-support-people-with-autism/
    https://www.theguardian.com/society/2017/jul/08/david-mitchell-son-autism-diagnosis-advice
    • A young person’s perspective – Is it OK to ‘be yourself ‘ when you are autistic? https://www.youtube.com/watch?v=EsH1fX4MM60
    • Healthcare Improvement Scotland, Scottish Intercollegiate Guidelines Network.(2012) Autism spectrum disorders, A booklet for young people • Large print edition http://www.chipplus.org.uk/userfiles/file/asd-pack2/pat98younglarge.pdf
    • Communication Trust https://www.thecommunicationtrust.org.uk/resources/resources/resources-for-practitioners/how-to-use-the-progression-tools-video/
    • Experts by Experience, U-Tube, Blogs eg
    o Yvonne Newbold and Malcolm Cooper Caring Responsibilities and Stress U tube
    https://www.youtube.com/watch?v=QB3ghH9x5Uw
    o Yvonne Newbold, Breaking the Silence on Violent Challenging Behaviour (VCB), Blog
    http://yvonnenewbold.com/violent-challenging-behaviour-the-basics/1548-2/
    o Yvonne Newbold, The Reporters’ Academy Recording U tube https://www.youtube.com/watch?v=YP5nG8CDz3k
    o Website ‘It must be Mum’ https://itmustbemum.wordpress.com/about-us/
    • Council for Disabled Children (CDC) Useful links to resources, publications and tools for commissioners, practitioners and local authorities.
    https://councilfordisabledchildren.org.uk/help-resources/resources/health-social-care-and-independent-support-resource-guides
    • Council for Disabled Children (CDC) E-Learning Modules
    https://councilfordisabledchildren.org.uk/learning
    • The Advocates Gateway (2017) Website Toolkits http://www.theadvocatesgateway.org/toolkits
    • NHS Massive Open On-line course for transforming Learning Disability Services (2017) https://www.slideshare.net/NHSEngland/mooc-word-clouds-69504358
    • Positive Behavioural Support (PBS) Coalition UK (2015) Positive Behavioural Support, A Competence Framework http://www.skillsforcare.org.uk/Document-library/Skills/People-whose-behaviour-challenges/Positive-Behavioural-Support-Competence-Framework.pdf
    • Autism Education Trust (AET) – Resources for Professionals
    http://www.aettraininghubs.org.uk/local-authorities/
    • Royal College of Speech and Language Therapists, Working with young offenders https://www.rcslt.org/about/young_offenders_and_criminal_justice/intro
    • South London and Maudsley NHS Foundation Trust (2017) Handbook for Carers
    http://www.slam.nhs.uk/media/176078/carers-handbook-2017.pdf
    • Centre for Autism, Middletown (2015) Life Skills, Research Bulletin Issue No. 17
    https://www.middletownautism.com/fs/doc/publications/bulletin-17-life-skills.pdf
    • National Autistic Society (2017) A guide for Police Officers and Staff http://www.autism.org.uk/products/core-nas-publications/autism-a-guide-for-criminal-justice-professionals.aspx
    • National Autistic Society (2012) Autism: an at-a-glance guide for criminal justice professionals
    http://www.autism.org.uk/products/core-nas-publications/autism-an-at-a-glance-guide.aspx

    Reply
  4. looked_after_child

    And if you are interested in the neuro-science research – here is a good place to start with many downloadable pdfs
    http://www.neuroscience.cam.ac.uk/directory/profile.php?sb205

    I’ve trawled because I was looking for this paper
    Positive and Negative Experiences of Mothers with Autism ———-
    https://imfar.confex.com/imfar/2016/webprogram/Paper22166.html

    If you work in Child Protection you really really need to know this stuff.

    Training around attachment theory is only one small strand of child development and its mis-application for whatever reason no matter how well-intentioned, just dos’ent lock people out of services it causes massive fear and distress and can lead to families losing children.

    Reply
    1. HelenSparkles

      Attachment theory is of course one strand of child development, it is fairly fundamental rather than small, in terms of normative development.

      Reply
      1. looked_after_child

        Helen,
        My guess is that if you need social care involvement with your family – that is is highly likely that many will not have ‘normal’ development. People do well if they can..so what is preventing them doing OK? For many the answer is disability.

        I went to The Howard League’s latest report presentation on ‘maturation’ http://howardleague.org/research/

        Same issues –
        late maturation v’s disability ( justice system) = attachment theory vs autism ( care system)

        We have info on young people in prison because different assessment regime (M-CHAT vs SDQ) – A very high percentage have cognitive disabilities..cannot cook a meal say because it requires pre-planning and multi-tasking. Someone with these deficits has to be taught everything – nothing taken for granted. Talk of maturation teaches US to have some sympathy but gives little understanding and is a cul-de-sac for many because it dos’ent ensure these young people have the protection of Disability Legislation (such as it is.)

        Reply
        1. looked_after_child

          for ‘assessment’ should have said ‘screening’..there is a difference. Screening can be carried out by people with much lower skill levels and there is a high potential for ‘false negatives’ and ‘false positives’. Assessment speaks for itself but hopefully those doing assessments understand ASD ( would’ent bet on it if a non-standard presentation though?).
          SDQ was not designed to detect Autism. One very respected clinician who knows everything there is to know about ASD and almost nothing about children in Care referred to it as ‘a research tool’. Well, this research tool is used to screen 80,000 children entering Care and personally I think ‘Confirmation bias’ on the part of the people doing the screening is likely to be a big part of why these children are being ‘missed’ in many LAs…and so on.

          Reply
        2. HelenSparkles

          For many the answer may be disability, but for most of my cases there are issues around domestic abuse, substance misuse, and mental ill health. There are antecedents for all of those issues, predominantly lying within the childhood of the people who are now parents, and that is very sad. Working with those people, even where attachment is clearly an issue for both parents and children, I never use the phrase attachment theory. Working on making life better for everyone in the family often involves some very quick wins, if there is capacity and motivation for change, and change is hard for all of us. Social work is broad, families have varied and complex needs, and a lot of environmental issues are labelled unnecessarily. I’ve lost count of the children who present with ADHD indicators which disappear once their care giving changes, either because parents can effect change, or because they are in care.

          Reply
    2. Sam

      ” Disturbingly, approximately 1 in 5 mothers of a child with autism, regardless of maternal diagnosis, were assessed by social services; of those, 1 in 6 had their child compulsorily placed for adoption. Finally, rates of allegations and investigations of suspected fabricated illness amongst children with autism and their siblings were two orders of magnitude higher than the known incidence the UK.

      Conclusions: Mothers with autism would benefit from far more and better tailored support. Allegations of fabricated illness, and high rates of surveillance by social services suggest there may be discrimination towards mothers with autism. The stigma associated with autism may be a barrier to accessing services. Further research should consider the mental health implications of being a mother with autism. There is a clear need for more and better autism awareness within the UK.” Surely this is very widespread discrimination. It however confirms my view that rather than support parents with autistic children, they are condemned as bad parents. Perhaps we need some reality TV show, where a professional does a life swap with a parent of an autistic child. I know SW are over worked, but unless you have a support network , in some cases you literally get no time off as a parent. Imagine having a toddler, with no naps or nursery for years and years, plus add in meltdowns, school exclusions, endless meetings. Any professional up for it? By the way the wages are crap also, if you lucky some one will finally realise you are struggling and signpost you to Carer’s allowance.

      Reply
      1. looked_after_child

        ”1 in 5 mothers of a child with autism, regardless of maternal diagnosis, were assessed by social services; of those, 1 in 6 had their child compulsorily placed for adoption.”
        so is it any surprise that many adopted children go on to develop behaviour that is linked to having a disability and poor mental health in adolescence? If mum is autistic, child is likely to be autistic..is this really big news and yet it seems to be to adopters – so big that most don’t know?.
        Trauma that a child can recover from is a much more attractive prospect and thankfully very real for some adopted children but for others I think not. Adopters should be prepared a lot more?

        Reply
      2. looked_after_child

        I agree Sam..I met someone this week who ran a SW team in her career. She made all SWs spend three days a year working in a special school holiday club…so when SW’s said ‘x doses’ent seem to be coping well with her child’, she could say ‘you found it difficult to work with this child for 10 minutes, imagine what what it is like all day, every day.’ This to my mind, it humane professional practice.

        And there is another aspect to this I think
        See this brilliant blog
        https://itmustbemum.wordpress.com/2017/07/19/the-final-straw/

        Now imagine if a Mum faced this and she came from a different socio-economic bracket.. Well she’d be part of the ‘neglectful parents’ stats..

        The brilliant mums who write this blog find a route through the system and pull themselves out of the mire. They negotiate the appeals and tribunals and get their children into the £60k per annum schools – not something they ever wanted to have to do but they have all sorts of resources of education, support etc..
        BUT the other Mums with children with the same difficulties, who are disorganised or coping with learning difficulties or housing insecurity or whatever.. they and their kids don’t stand a chance…..As always it is not about the money, it is about how we choose to spend the money..what our values are…what our culture is…whether we want to blame or to help

        Reply
        1. looked_after_child

          and for our Government ..for those in power their answer to every problem is to create a market somehow because ‘the answer to all ills is a marketplace in services’ (small government, free market) that ends up as a ‘market in people’ whether people in prison, people in learning disability units, children in care and children entering the adoption system..no values – just commerce.

          Reply
        2. Sam

          Totally agree. The lack of knowledge is astounding, Another of my children also has SEN , which required aids in the classroom. Her headteacher refused to let her have them as it would make her stand out. She also told me that she was just lazy, her face was a picture when the ED Psyc came out with a diagnosis. However of course , parents know nothing , ans are just awkward in insisting their child gets support.

          Reply
  5. Angelo Granda

    Looked after child, Thank you for all your work and for the links etc. As you probably know, there is quite a lot of interest in the media currently about the maltreatment of the autistic and others with neuro-disabilities . Documentaries by professionals are protesting about it not only parents whose children can be said to be victims.
    Let us all hope that the Lawyers particularly the Family Court Judges see and hear it all , question irresponsible and unrealistic appraisals more and test LA evidence more meticulously. At the moment, they rely on the SW’s and Guardian’s reading of research and their assessments which aren’t only incompetent but also, in many cases, dishonest lacking impartiality.
    I have read the wonderful advice on recording etc. and working with the SW’s towards more successful outcomes for ones children and I do hope it works for some. However , I sincerely believe that optimal outcomes for children are secondary to LA’S. SW’s ( acting under strict policy imperatives ) have no intention of working with parents OR within legal frameworks in many areas and ASC youngsters are regarded as ‘money-trees’ by L.A’s.
    They actually avoid the truth and as part of that ,they have to ignore parents completely not even bothering to see them, interview them or involve them in care-plans at all. That is against the Law and even a SW on this resource says she can not see how SW’s can carry out their duties fairly without even seeing the parents.
    Thus much of the evidence which lawyers like Sarah see is made up and not investigated correctly . The LA evidence is therefore inevitably cloud-cuckoo land speculation and the truth is buried .The only remedy for these poor, unfortunate children is an appeal to a higher court. It’s not worth a parent trying to argue the facts or trying to put their own evidence because the Judge always prefers the professional evidence indeed it is expected of him or her to do so unless there are really exceptional reasons not to .I guess they don’t look for reasons at all hence the suffering caused. My view, as an ordinary parent following the advice of the P.M’S office , is that an appeal must be made on the grounds that cases aren’t conducted correctly. That is the only remedy! Usually, they make endless mistakes from the outset . Let it be the Lawyers task to check procedure thoroughly and bring a halt to this madness. If the lawyers cannot see that a ‘fair trial’ demands fair procedures and safeguards then what hope have citizens got? ( See art.6. ECHR ).
    Will they ever pull their fingers out? In the meantime, , the children suffer for it and wherever they are ( offshore on the Isle of Wight, the Channel Isles or even abroad) the real truth remains hidden and will, I presume, be interred with the bones of the parents.

    Reply

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