One size doesn’t fit all

Some time ago I had a conversation with a parent of a child with an ASD diagnosis about the use of public care for both respite and therapeutic purposes, particularly when there has been violent and abusive behaviour towards parents present. Since then we have corresponded from time to time as media interest or legislative procedures have bobbed up and down.

The issue which initially brought us together was with regard to the need for specific understanding of the different and differing needs of neurologically atypical children and young people. We were concerned about a “One size fits all” approach in many aspects of support for families, and a shortage of specific training in neurological conditions for many engaging with families regularly in their work. We acknowledged that some conditions (such as PDA) had only recently been identified, but that other diagnoses were well known and well documented, so that there seemed little excuse for ignorance about the effects on mood and mental health, learning and employment opportunities, behaviour and offending. This parent had undertaken significant research into the diagnosis, communication with family, documentation and support for children and young people with ASD, and found that many went undiagnosed or their specific needs unrecognised, despite their over-representation within care and the juvenile justice system.

I have worked with families who have chosen not to obtain a diagnosis. For them it was important that their child was not labeled and treated differently. But for many (most?) a diagnosis is crucial in accessing advice, support and therapy. Different conditions may require very different responses and the wrong approach may serve to worsen a situation.

ASD / ADHD / FASD diagnosis is a frequent factor when we look at the broader picture of child to parent violence. But it is important to remember that not all children with such diagnoses will become violent and abusive. This is a correlation, not a cause. I am interested however that, around the world, I have recently heard of different groups simultaneously looking at this issue and the need to develop specific programmes of support for families where this is an additional factor. It seems to be there are a number of specific questions to be addressed, among them:

  • Is the family able to access help for the diagnosed condition as well as the CPV?
  • What particular techniques might be more, or less, appropriate to use?
  • Are there considerations about the delivery of the programme to the young person in terms of the dynamics of group work, the presentation of materials, or the timing and structure of sessions?

The parent wishes to remain anonymous, for the protection of her child’s interests, but has given me permission to publicise some material which she has gathered, and which deserves a wider audience. If you are interested in work on the Children and Social Work bill you can see this here. If you would like to add comments of your own you can do so via this Survey Monkey link.

The Challenging Behaviour National Strategy Group Charter can be viewed here.

As always, I welcome your comments to further this discussion.

1 Comment

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One response to “One size doesn’t fit all

  1. alce m

    Thank you for a very welcome post. My own view is that diagnosis is not a label – it is a signpost to strategies that have a better chance of reducing symptoms/ ‘challenging behaviour’ than would otherwise be the case. One example is where diagnosis leads to awareness of a young person’s communication and sensory needs as when unaddressed these can lead to very challenging ‘meltdowns’ and ‘shutdowns’.
    For me stigma is another word for prejudice and to deny someone information on why they struggle, in response to other’s prejudices seems pretty indefensible. When someone has information about why they struggle (diagnosis) and know that they are not alone in struggling in this way, they can choose to ‘disclose’ or not but at least they have the potential to become self-aware and manage behaviours such as violence that can be symptomatic of underlying difficulties including extreme anxiety.

    You raise a very interesting point of what a successful intervention programme for families living with extremely neurodisabled controlling/violent children would look like and as you so rightly point out, one size programmes are unlikely to have much success. I don’t have any of the answers but it is very encouraging that there is now beginning to be an honest debate about these issues. Thanks again.

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