Friday, 2 March 2018

Watch this space ...


In the course of my clinical work, I meet with many parents who are seeking an explanation for their child’s difficulties.  I am also privileged to have been allowed to join a number of closed Facebook groups where parents share their experiences of bringing up children with Autism and PDA. Without exception, these parents have been strong, resilient and determined to achieve the best possible outcomes for their children.  Many have had their parenting repeatedly questioned and report feeling ‘lonely, isolated and full of self-doubt’.

I wanted to write this particular article to try and clarify once and for all why many clinicians may consider the possibility of a child’s difficulties being due to an attachment disorder rather than Autism or PDA. 

Brain development in babies starts in week four of gestation.  The earliest part of the brain to develop is the brain-stem.  This part of the brain deals with hunger, thirst and respiration.  Next to develop is the mid-brain, which controls sensory processing, pain modulation and motor functions.

A little later what is known as the diencephalon (including the thalamus and hypothalamus) starts to develop.  This part of the brain manages the ‘fight, flight or freeze’ response to threat or perceived threat.  It also serves to process and relay sensory information.

The brain connections present at birth are fragile and still immature, and are highly dependent upon environmental factors.  It is now known that any physical or psychological difficulties which occur pre- or shortly after birth can impact upon how the brain wires up.  Repeatedly being exposed to stressful situations leads to increased activation of the sympathetic nervous system (the fight, flight or freeze response).
 
Chronic stress (and note the use of the word ‘chronic’) can lead to structural changes in the higher regions of the brain associated with emotion control, problem solving, and learning. 
An overactive ‘fight, flight or freeze’ response can also leave the child fearful and hypervigilant.

Children exposed to early ‘trauma’ often have digestive issues, sleep issues, sensory motor issues, hyperactivity, and are impulsive and irritable.  They frequently display difficulties with emotional regulation and experience cognitive difficulties, such as in problem solving, planning and sequencing. They will also display cognitive rigidity and difficulties with play. They are also likely to experience ‘sensory over-responsivity’ and will react badly to touch, light and loud noises. They may also have problems with proprioception – knowing where their body is in space.

It is easy to see how this kind of difficulty – known as developmental trauma – and Autism and PDA can easily be confused.

However, a great deal of research and work has been carried out in an attempt to put together diagnostic criteria for, what is now being referred to as, Developmental Trauma Disorder, and it is vital to get the message out to clinicians who are assessing children that the proposed criteria are VERY clear. There must be evidence of exposure to ‘multiple or prolonged adverse events over a period of at least one year’.   This means repeated and severe domestic violence; significant disruption of caregiving, repeated changes of caregiver, or exposure to severe and persistent emotional abuse.

Some children do, sadly, experience this level of trauma – I have seen it many times in my own clinical work.  Children who have had an unfortunate start in life do display behaviour that looks very much like Autism, and more particularly PDA.  But, it IS different.

Many people, particularly clinicians and social workers, will have come across the Coventry Grid. The Coventry Grid was initially put together by a group of clinicians in Coventry CAMHS in the early 2000’s and subsequently discussed with the West Midlands Regional ASD Working Party (which I was a part of) before being written up by a Clinical Psychologist called Heather Moran and published in Good Autism Practice in 2010. It was revised in 2015, following Heather’s involvement with a group of Speech Therapists working in the youth justice system.  It provided a good framework for distinguishing the types of behaviour seen in both Autism and attachment disorders.

A former colleague of mine, Dr Richard Soppitt, a Consultant Psychiatrist, and his colleagues, have recently published a questionnaire (also in Good Autism Practice) in 2017 which aims to take this work further.

As much of our clinical work focuses upon the PDA profile, we are currently working on a further version of this which will include PDA.  We hope that this will help clinicians to unpick the differences more easily.

In the meantime, though, I would urge any parent who finds themselves in the situation of having to defend their parenting, or is faced with the suggestion that their child has an ‘Attachment Disorder’, to quote the extracts above from the proposed criteria for Developmental Trauma (because this is basically what is believed to lead to an attachment disorder), and ask for the evidence of ‘prolonged and severe’ difficulties. I am not a neurobiologist but given that an over active stress (fight, flight or freeze) response can develop following trauma, is it not entirely possible that some children with Autism, and more specifically PDA, may be born with a heightened stress response, without the trauma? The resulting sensory and behavioural difficulties may at first glance appear very similar until the Autism is explored further.  

Of course, I am not saying that some children, with or without Autism and PDA, don’t have attachment DIFFICULTIES. This, for me, is different from an attachment DISORDER or developmental trauma.  Life happens.  Some parents struggle to manage their children for a variety of reasons; poverty, deprivation, poor role models of their own, depression and substance abuse being just a few.  In these cases, there is no doubt that parenting courses and support to parent more effectively can be very helpful, and more importantly, often brings about a change in both the child’s behaviour and the relationship between the parents and the child. However, this for me highlights the need for clinicians who are working with families to adopt a more ‘systemic’ approach.  By this I mean they take account of the whole family situation when arriving at the most appropriate treatment or assessment for a child who is experiencing difficulties.  They need to listen to the parents.  If the child’s behaviour is so challenging and so disruptive to the family, other children in the family are well behaved and well-adjusted and, most importantly, there is NO evidence of trauma, then sending them on a parenting course, or telling them they do not ‘understand their child’s needs’, is not very helpful.

12 comments:

  1. Thank you for your work. To read this today has made me feel so much better. It rings true for me and my family. The heart ache of attachment disorder mis-diagnosis and constant suggestions of parenting courses.

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  2. A really helpful summary of an issue which many parents are faced with, thanks.

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  3. This is really interesting. My birth son has a diagnosis of dev trauma due to unmet infant needs present at birth undiagnosed for 8 years. We now know he has a genetic condition and has been massively let down by healthcare providers. I banged on doors for years as I knew something was wrong but it wasn’t until he fell out of education due to a health crisis and disabling mental health that the system started to act. Even then, ASD and PDA were held up as reasons for behaviour by school, NHS (Coventry & Warwickshire!) and we had to work very hard to seek the right answers with the right clinicians to uncover the diagnosis that fit the history. Dev trauma can happen in any family, not just Looked After families. More awareness needs to be made that ACEs happen in loving nuclear families. Attachment & Trauma treatment pathways are closed to us as we are a birth family, something I am fighting my CCG on. Ironically the ASD pathway would’ve been an ‘easier’ diagnosis to accept in terms of available resources and care available. I appreciate any effort to raise awareness about the differences though. Thank you.

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  4. Thank you. Has any research been done on Breech presentation and PDA? Or external cephalic version (ECV)? I wonder if there are links in the sense of pre-birth trauma.

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  5. Thank you so much for voicing this. So many times I've sat though 'meetings of professionals' that have quickly turned into parent-bashing fests - sharing anecdotes and observation of a parent's interactions with their 'possibly ODD or PDA' child to demonstrate that the child's symptoms are the result of parental detachment, 'coldness' etc. No acknowledgement that the symptoms themselves may have disrupted the relationship and interactions, not the other way around or indeed that being observed by (judgemental and blaming) professionals might influence the interactions being observed. And to be honest, even the parents who did let their children down and contributed towards developmental trauma symptoms, may have done the best they could with what they had at the time (and in the absence of good models, support systems and basic resources). Blaming doesn't help. Support helps.
    www.NVRnorthampton.co.uk

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    1. Thank you for speaking out. There is a massive parent-blame culture, with parents treated like something on the bottom of the shoes of professionals, with massive egos who love to deflect professional failings into being parental faults. It needs a lot more professionals whistleblowing as to this going on.

      "Professionals/Authority and the Parent Blame Culture" http://docs.wixstatic.com/ugd/58c8f1_a481c4f0b37540ddbac0bdd4ad9851eb.pdf?index=true

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  6. "The Overdiagnosis & Misdiagnosis of Attachment Disorder"
    http://docs.wixstatic.com/ugd/58c8f1_c414ab0452b94c4bb3a80a5dfd6e54f1.pdf?index=true

    What really needs to be acknowledged is that this is sometimes given as a deliberate misdiagnosis to prevent access to expensive autism related resources. It's not all about ignorance and misunderstanding. There are deliberate agendas afoot.

    Have a look at this: https://www.rightpro.org.uk/s/article/Are-Thousands-of-Children-with-Autism-in-Care-for-Erroneous-Reasons-Quite-Probably

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  7. I would also be interested if there are any proven connections between breech presentation and PDA.

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  8. Reading this, as parent of 2 girls with autism diagnoses, I feel the need to state that attending mainstream school has been traumatic for both of them, particularly the younger one, who has always had extreme sensory sensitivities and along with being a natural extrovert, slapped on a mask to cope from age 5/6 onwards. The punishments for reading and writing difficulties, social difficulties, and repeated absence, from that age until 13 years, along with the constant bullying and lack of appropriate teaching response (because they did not know) created a constant state of fight or flight for her. The inappropriate school environment alone has been traumatic. Not being identified as autistic as a little girl has led to a worsening of those things you mention that are sometimes seen as consequences of trauma, and may also be explained as autism. My child has both.

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  9. How does this fit into premature birth and brain development/ psychological development in the long and short term term?

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  10. I would also add that the most recent DSM specifically states that ASD MUST be excluded before attachment disorder can be diagnosed. It is very frustrating to put this in front of professionals who don't even dismiss it, but just plain ignore it as though you are some kind of lunatic for daring to question them

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  11. nice blog too informative. looking and reading your points its so impressive. doing more blog like this.

    i really appreciated doing like this.
    AUTISM

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