Tag Archives: autism

“He doesn’t mean to hurt”: the impact on families of violent behaviour from autistic children.

Another great programme from the BBC this week, available until November 28th. Victoria Derbyshire looked at the violence experienced by families of severely autistic children, and the difficulties for parents in obtaining support. (You can also read some of the stories here)

 

As well as introductions, and emails and texts from parents throughout the programme, there are two main sections to the item: a film from Noel Phillips (from 16.40 – 33.40), and interviews and discussion with three families and an MP (from 1.20.10 to 1.31.30). The programme ends with further calls from three families affected at 1.50.24. Some commentary is offered from the National Autistic Society, and the Local Government Association. You can view the whole of Noel Phillips’ film here.

There are said to be about 700,000 young people on the autistic spectrum in the UK. While not all will show violent behaviour, for the families of those who do, finding understanding and compassion, let alone support seems to be an impossible struggle on many occasions. For those familiar with issues around child to parent violence, there was much resonance with the experiences of these families: children who move very quickly from being passive to escalating into direct violence to themselves or others – for minutes or even hours; physical injuries, being pushed downstairs, strangulation and self harm, damage to property, concern for the safety and welfare of siblings; and tragically too, the judgement from parents at the school gate, the presumption of blame on the parents, minimisation by professionals, and the increasing isolation of families as a result. “We don’t leave the house unless absolutely necessary because of the dangers from my son”, says one caller to the programme. Sadly too we hear of guilt, despair, and even thoughts of suicide by parents.

I have blogged in the past about the differences between the behaviour exhibited by these children who also have severe learning disabilities, and what we are otherwise learning to call child to parent violence, but there is indeed an overlap for many families where the violence and abuse comes from a mixture of trauma, autism spectrum disorders,  and neurological damage. With a clear lack of intent for these children – which is raised in the programme – Yvonne Newbold chooses to describe it as Violent Challenging Behaviour, rather than child to parent violence. These are children reacting from a place of extreme anxiety and stress.

Josephine Larcher, one of the parents who called the programme, talked about how this sort of experience is “outside of most people’s understanding”. This does seem to be crucial to unpicking why we see such a poor response. Without direct experience of living with a severely autistic child day by day, people fall back on their own experiences of children’s behaviour in making assessments. This can lead to families being told they don’t need additional support to that of any three year old, or an assumption that repeated requests for help mean that you are not coping and therefore your children need to be accommodated elsewhere. The lived reality shown is of failure by local authorities to understand needs, or to intervene early to prevent a situation worsening  – “the parents of autistic children are not being properly supported in dealing with their violent behaviour”, which leaves families experiencing high levels of stress and anxiety themselves, with ” a severe injury waiting to happen”, and in one case severely out of pocket, as a parent spoke of paying £30,000 a year to privately fund a recognised therapy (ABA) that would not otherwise be available.

 

Are these criticisms fair? Asked to comment, the LGA points to the budget cuts inflicted by central government which has led to families falling through the net. Labour MP, Paul Williams, who appeared in the studio, said that he went in to politics himself because he felt powerless at the lack of resources available to professionals and saw this as a way to make a difference. He spoke about the help he believed was necessary as an answer for families. But while its easy, and probably reasonable to pass the responsibility up the chain in this way, there are some things that are easy to fix when you hear about them: lack of compassion from front line professionals, the judgementalism and failure to comprehend what it is that parents are asking for or experiencing. Many, many professionals do act with great understanding and empathy. It is in the nature of programmes such as this that we do not hear the positive stories. But that so many families, as we heard today, are left to struggle, is a testament that we have not got this anywhere near right.

I have tried to summarise what parents were asking for – those on the sofa, those who gave witness in the film, and those who called in:

  • Support, not stigma
  • Prompt diagnosis, starting within 3 months of referral
  • Assessment that starts with the needs of the family, rather than as a gatekeeping exercise
  • Support for positive behaviour intervention within the home
  • Support for respite
  • Better information about where to go for help and how to manage behaviour
  • Offers of support that materialise in practice

This is indeed a hidden issue still within our society, but it is one which is finally getting the attention it needs, and to which we can only hope to see a more positive response in future – if not in terms of resources, then at the very least from the professionals whose awareness and understanding has been raised by programmes such as this.

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#CPV: What does it look like, part 3. “It happened again tonight”

I am publishing this twitter thread from September 10th, with permission from Ian, who tweets as @DiaryAutism.

I think it adds something to the recent musings about the intent issue, and about the different issues for families where there is an autism diagnosis (here and here for instance); and leaves absolutely no room for any doubt about how it feels, for this person, to be a parent in that situation.

 

The most powerful emotion I have ever felt is the love for and desire to protect my children

It’s not that I’d take a bullet for them. It’s that I’d run through a brick wall to take a bullet for them

Parental love is all consuming and utterly life changing. Nothing else comes close

So when that love is repaid with violence it causes a great deal of cognitive dissonance. Just what the F is happening?

Of course it’s love you want to respond with, your child is not lashing out, they’re in distress. They need a hug from Dad

Which is exactly the opposite of what they want. In that moment, for whatever reason, you are not Dad. You are a target

E normally leads with the head. Not normally a butt, but something to push you away

But you can’t get away because he’s advancing on you and is normally digging his finger tips into your forearms

I say fingertips rather than nails because we’ve learnt the hard way to keep those bad boys short

By this point your soothing voice and pleas to calm down are drowned out by his screams. Screams that bare his teeth. Now it gets scary

Both your hands are busy trying to control his scratches, and he tries to bite you. How do you stop it?

A lot of the time you don’t and you let him sink his teeth into a part of your arm that has long since calloused up

Why? Because it gives you a momentary chance to get hold of something that might distract him. A toy, some food – anything.

By this point adrenaline is flooding your body and Fight or Flight has well and truly kicked in.

What to do? Flight? No chance! That’s my boy; he’s upset! I’ve got to stay and help

Fight? It’d be a lie to say that fighting back isn’t an enormously strong desire, especially if my wife or other children are at risk

But that parental lock kicks in – I’m not going to hurt him, therefore the only choice is to let him hurt me

And then – it’s over. Whatever caused the outburst has disappeared as quickly and as mysteriously as it took over

E will return to normal within a few moments and more often than not will be smiling before you’ve stopped bleeding

The welts, cuts & bruises are the least of your worries now though as that adrenaline you didn’t use to Fight or Flight floods your emotions

The worst part isn’t when it’s happening, it’s the powerlessness you feel afterwards. In feeling that love thrown back so brutally

We’ve had a bad weekend. 2 violent incidents, the first of which resulted in a short trip to hospital for me

But it’s a bad weekend on the back of a pretty good summer. I honestly can’t recall the last time this happened & that is such a good thing

It just goes to show; we’ll never not love him, he’ll never be able to control it always & we’ll never be truly out of the woods /end

Reading other threads, and other commentary, I am very aware that other families may not share the strength of conviction that Ian articulates. It is important that we do not build unhelpful levels of expectation, nor that we rush to heap further shame and pain on those who may experience things differently. 

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I fear my son will kill me one day

This headline and the accompanying piece in the Family section of the Guardian last Saturday could not fail to shock those who came across it: a mother describing the terrible physical abuse she experiences at the hands of her teenage son.

Screen Shot 2016-07-11 at 12.32.36

 

“Sarah” has found it almost impossible to admit that she is scared of her son, and yet when she first asked for help was told that it was unlikely she would get any – because he was loved and not in any danger. This reflects the prevailing story: that in a culture that separates children’s and adults’ needs and services, and focuses on the rescuing of children from danger, we fail to recognise the centrality of relationships in family lives, whether in their fragility of care or their strength to bring healing. Feeling undermined by professionals as much as by strangers and increasingly isolated at a time when their need for support on every level increases, the family is now offered 2 nights respite care every six weeks. Continue reading

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