Autistic children - Are we helping them after trauma? PTSD. cPTSD.

"Currently, there is no evidence based practice for the treatment of trauma [for autistic individuals]".

Those are words from a recent paper looking at ideas for how to help autistic children who have experienced traumatic events.  The paper, by Slack and Lucyshyn (2018), can be found at  https://link.springer.com/article/10.1007%2Fs10803-018-3854-9

I must admit that when I read this, I didn't know quite what to say.

We know that autistic children experience high levels of bullying.  We know that they are seen as a target by predators.  We know that many show distress behaviour, and many express a wish to end their own lives. Relentless potentially complex-trauma-inducing experiences, frankly.

We know there is likely to be an autistic child in every classroom, from the most recent research into numbers of autistic individuals.

But no-one knows how to help an autistic child who shows signs of trauma (for example Post Traumatic Stress Disorder or complex Post Traumatic Stress Disorder (PTSD, cPTSD)?).

The manual for Positive Behaviour Support gets to page 500+ before slipping in wording around "ooops, looks like 'challenging behaviour' may be PTSD".  [Other booksellers are available]

 It doesn't give further hints on what to do, because they don't know either.  So somejust continue to 'dog-train' the children to see if that helps.  Potentially hence the hundreds who ended up incarcerated in 'care homes', some in bare cells, stripped of everything they own to get compliance out of them.  All very alarming.  The 2019 paper from Parliament's Human Rights Committee refers to those children.  See if you can recognise potential PTSD: https://www.parliament.uk/business/committees/committees-a-z/joint-select/human-rights-committee/news-parliament-2017/detention-learning-disabilities-autism-young-people-report-published-19-20/

What are PTSD and cPTSD?

From an online article linked to in the paragraphs below, "PTSD usually develops after someone sees or experiences a terrifying or life-threatening event. After that initial episode, any reminder of it can trigger panic, extreme startle reflexes and flashbacks. Beyond that, however, there’s a wide variety in the way PTSD manifests: It can lead to hypervigilance and anger; it can cause recurring nightmares and other sleep issues; or it can lead to depression, persistent fear, aggression, irritability or difficulty concentrating and remembering things."   cPTSD happens for some after enduring multiple traumatic events or one really long traumatic event, from which there is no escape, for example.

There's more information on PTSD and cPTSD at https://www.mind.org.uk/information-support/types-of-mental-health-problems/post-traumatic-stress-disorder-ptsd/complex-ptsd/#.XLlvvOhKjIU

What does PTSD or cPTSD look like, in an autistic child?    This is explored a little in this article, which also lists some of the common ways that PTSD is experienced.  https://www.spectrumnews.org/features/deep-dive/intersection-autism-trauma/

Why don't we know enough what PTSD looks like in autistic children?  Why don't we have a clear idea how many are experiencing it?  I sense that this is because of the deeply problematic core belief in society that autistic distress is a 'problem behaviour' that is to be trained out of us.  Looking at that list, anger, depression, aggression, irritability, panic, hypervigilance.... I'm mindful of how many behavioural-intervention checklists I see where those items are listed as 'autism symptoms' and the individual is relentlessly trained and rewarded for making their internal terror invisible to outsiders.

In a quest to find something, anything, helpful, I followed a link to Shaffer et al's recent paper (2018) proposing a new treatment regime (in part ABA based) for emotional regulation, which some believe is a way to treat trauma. The link is here  https://link.springer.com/article/10.1007%2Fs10803-018-3727-2

It looked at 34 children with combinations of diagnoses of autism, or ADHD, or conduct disorders, or depression. In other words, so varied that any results would have been impossible to unpick, I suspect.  26 male, 8 female. Age 8-12.  The parents were asked about the child's angry or defiant behaviour, and the parents were asked about their own quality of life.  Then an intervention was done, and the parents were asked to rate the child's behaviour and whether it improved the parent's own quality of life. A brief clinical improvement score was also given (the CGI-I). We are not told whether the clinicians had any deep modern understanding of autism.   The CGI-I's general use is discussed here :  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2880930/   It's a basic measure designed mostly for illness, and is around 'is the patient better than last week'?  No mention of sensory needs or adaptations, just behavioural and psychological interventions.  One could question whether a medical checklist is appropriate for a neurodiversity, also.  Better than what?  From whose perspective?  If we train gay people to act straight, are they 'better' than they were last week?

Can anyone see the problems here?

Everything is related to a caregiver's or professional's observation of external behaviour, and how happy the caregiver is, not the child. It's irrelevant to hear the child expressing whether it's worked as a therapy or not.  The actual feelings, experiences and self-determined outcomes of the child aren't evaluated, it appears.  I'm pretty shocked, if so.

If the child learns not to show their distress, hey, the therapy's worked...?  Really?

As a professional in the field of autism, I am deeply concerned about all of this.  It appears that we are not even off the proverbial starting-blocks in the race to understand autism and trauma, with children.  We don't know what it looks like, we don't know how to treat it, and we are told by behaviourists that a quiet child means a happy child?

I do not agree.  From personal perspective of 20 years in autism work, I sense that by encouraging traumatised children to never show how they feel, then not even asking them, we are internalising the trauma and potentially setting the children up for very bad outcomes indeed.

I am not a therapist.  I would very much like the therapeutic communities to do some work on this, because clearly this is a desperate situation for autistic people of all ages.  It's not just children who experience traumatic events.  We see an increasing number of autistic adults who are being diagnosed with PTSD or cPTSD, and an increasing number of therapists desperate for some clues, some strategies.

What would my advice be, right now, as a professional who specialises in autism training, enablement of autistic lives, safeguarding, and cultural interpretation?

• That we get excellent modern training on autism, from autistic specialists and allies. Training that acknowledges the humanity and difference of autism, rather than framing it as deficit and disorder.  The books of Dr Luke Beardon are an excellent start for this, for example. So is the work of Dr Damian Milton on double empathy.
• That we stop seeing all 'behaviour' as defiance, or as 'autism'. Think - could this be trauma?
• That we stop assuming that all distressed autistic people will show 'challenging' behaviours.
• That we stop interpreting quietness as a success or as a sign of happiness.
• That we acknowledge that repeated deprivation of sensory and other needs for autistic children may be traumatising, and that we investigate and take seriously the endless personal accounts of those needs, by autistic individuals.  It should not be routine to take everything autistic children need away from them, to 'normalise' them.  
• That we start asking autistic children and young people about their actual experiences.  Yes, some do not use spoken language.  This is where working with autistic specialists as interpreters, and working with the individual using different communication methods, is important. Good SALT teams are allies here.  It is not enough to say, "Well it was too hard."  Our job is to communicate effectively with people, not just ask others for their opinion on them.  That's not a proper evaluation.
• That we commission balanced, autistic-informed and led research into all of this, as a matter of priority, and look at ways to fund the resulting therapies properly and fully. 
• And mostly, that we acknowledge the damage done to too many autistic children, and indeed adults. Whether accidentally or deliberately.  Instead of blaming autistic people for every single thing they do or say and calling it a 'deficit', we need to acknowledge the deep humanity and integrity of most autistic people, and acknowledge the potential for trauma to be at the heart of their distress responses.  

This is a topic that needs to be on every key organisation's agenda, putting together the best of the best.  We need to be working with the autistic professionals and general autistic population at every level,  finding out how to identify trauma in autistic people, how to safeguard against it, and how to improve the lives of those enduring it in ways meaningful to the person.

Autistic people deserve lives of safety, of thriving, and of caring, enabled to be their authentic autistic selves.  That is a set of societal and therapeutic outcomes we should all be seeking.

Thank you for reading.

Autism, Age, Wisdom

In an online poll this week, autistic people were asked whether others mistook their age.  Perhaps thinking they were older than they actually are, or younger.  The results are interesting.

Out of nearly 900 votes on Twitter thus far, the big majority say they are told they look younger than they are.  I wonder if this is part of why we think autism is to do with young people?

It's a challenge, autism and ageing.  Partly because we have almost no research on autistic older people.  Thus, the general - and incorrect -  view of society is that we're best represented by children, teenagers or young adults.   Partly, the myths that we are all 'childlike' to use a phrase, based on the idea that because some have a deep focus on (say) collecting things, it must mean that we're stuck in a child-like phase of life, unable to match adult responsibilities.  Some have had their IQ measure with the wrong test, leading to the conclusion that lots have a low IQ when they they do not.  It's all been a mess.

All of this leads to some very wrong conclusions about autistic people.  That we are foolish, incompetent, 'little more than children' in the way we think.

For a start, I can safely say that after decades of working with and alongside autistic people of all kinds, I've never met a wiser group of people, in general.  I'll continue to generalise:  Instead of being focused on pleasing the majority, the autistic quest for fairness and social justice is a constant theme.  Instead of thinking everyone must show sophisticated interests suitable for some 'high society' magazine, in order to display a high social and intellectual rank, many autistic people have found joy in any number of wider interests.  Those deep interests lead some to become the world's experts in those topic, whether it's forming world-leading and important collections, deep knowledge of subjects that benefit all of humanity, or a singular joy in a favourite topic or hobby.

If we look at the UK at the moment, our young people are facing one of the worst crises of any 'first world' nation.  The NHS 2017 mental health survey for children and young people found that 1 in 8 now has a mental health difficulty.  Around 1 in 6 of the oldest of the teenagers. Figures that are rising year on year.  Many say that the pressure on them to be sophisticated, fashionable, slim, fit, academically excellent, has driven them to absolute despair.

I think we forgot to let our young people be young.
I think we forgot the value of joy in more simple things.
I think we pressure everyone to be 'normal' or better.  Academically, in terms of looks, in terms of their interests.
And I think we forgot the deep wisdom to be found, not in academic centres of learning, (some of which frankly have driven this nation to the brink of disaster at present  - think of the Eton situation and senior leaders in society getting picked mostly because they went there) but in those who are amongst the most marginalised and seem to be the most 'unsophisticated'.

We've been looking for wisdom in the wrong places.  

There is much to be gained from spending time with autistic people.  Re-learning what is also important.  Re-listening to what also matters.  Re-understanding what it is to have a different culture and communication style, a different set of priorities.

We need to research the lives of older autistic people.  More than that, though,we need realise that society needs the minds, the joys, the deep interests, of autistic people of every kind.

Thank you.