July 2017

Parents ‘blamed’ for children with autism’s behaviour

The headline sounded familiar, so familiar in fact that it really captured my attention and I had to read it.  A BBC article (see here: http://www.bbc.co.uk/news/uk-wales-40717652?SThisFB)  describes the experiences of many parents, who how through a lack of understanding from professionals about autism and its effects, are then sent inappropriately on parenting courses.  This resonated with me so much that I just had to “throw my penn’th worth” into the debate and write a blog article about it.   When I read the article my first thoughts were “surely that isn’t still happening”?

The article (which is short) discusses an investigation into the experiences of parents and a new initiative in Wales that is designed to support families better.   It reports that parents are often “blamed” for their autistic child’s “bad” behaviour and subsequently sent on courses to improve their parenting. As many of you will know I have 3 children diagnosed with autism spectrum disorders. Each one of them is unique and special in their own way. Each of them despite having similar diagnoses is different from each other.  Their journeys were/are different. They were all diagnosed at different ages and had very different educational experiences, despite living in the family, same town, healthcare trust and education system.  By far the hardest diagnosis was with our first child.  It was apparent to us from the age of 7 months of age that he was “different”.  He did not like to be hugged or touched and as soon as he was able to, would actively “wriggle” free from our arms in order to avoid being hugged. As he developed he did not play with toys in the way that they were designed. He would just throw them all over the room, or line them up into beautiful lines. We proudly looked on and thought that he was creatively making car parks. He had developed a lot of irrational anxieties about all sorts of things. He did not play with other children well and would mostly just whack them. He had poor eye contact, delayed language, disliked changes in routine and was very hyperactive.  In fact, we had never heard of autism at that point and thought that he had ADHD. He was like a “whirling dervish” and was constantly busy. Keeping him safe was very challenging as he had an amazing capacity to defeat any regular child safety precautions and equipment. He was super talented at either climbing over or opening safety gates (from 1 year old). He would remove socket covers and merrily throw them over his shoulder, even though I struggled to remove the darn things when I needed to plug something in.  He would move items of furniture like his highchair to use as a ladder to gain access to the things he found fascinating. He would do this as soon as your back was turned for a second.  Unfortunately, he had a fascination/fixation with electrical knobs and caused a kitchen fire by the time he was two.  I’m wincing as I confess this, because I’m worried that the people reading it will think “how was he left long enough to get to a cooker knob to cause a fire”?  Believe me he did it in no time at all (whilst I was breastfeeding my younger baby).  He could remove himself out of his car seat in minutes and his pushchair too. I sewed a series of rucksack type buckles onto his car seat in order to delay the amount of time he took to get himself free. We nicknamed him Houdini!!  He would run away constantly if you let go of his hand for a second and keeping him safe was a full time job.  Most days were very challenging. By the time he was 2 ½  I was seeking help. When I did, my health visitor said “oh I’m surprised you have left it so long, we’ve been worried for a while”.  I’m not surprised they were worried. I would go to the health visitor’s clinic with him and my new baby, and my oldest son would run a little course between turning the taps on/off constantly, emptying the fridge of the vaccines, throwing them all over the floor and then emptying the steriliser unit of speculums. Once he had completed the course, he would begin the circuit all over again.

So, at the age of 2 ½ we began attending CAMHS.  It took 3 further years to get him a diagnosis.  During that time we attended CAMHS regularly (almost weekly) and had every aspect of our lives and parenting examined, queried and assessed. We were asked to implement strategies and techniques and did so with patience AND frustration. We were willing to do anything we could to support our child, but throughout the entire experience I always felt like a giant finger was being pointed at me.  This finger came with the implied message of “you are a rubbish parent because you cannot control your own child” or, “you’re not doing it properly, you’re not trying hard enough”.  At one point a professional actually said to the two of us that our child’s difficulties were as a result of the environment we were providing for him.  When we queried this and responded “well, why is our other child okay if the environment is so bad”?   The answer we were given was “well, it’s his emotional interpretation of the environment” to which my husband got very cross and very abrupt.

Now, don’t get me wrong I’m not saying that parents should not be sent on courses to improve their performance. In fact, it’s a big part of the therapeutic role to coach a parent, but when a parent is experiencing the level of difficulty that we were with ours, precious time is lost and wasted. The time we spent being “blamed” could have been spent more productively addressing his actual difficulties.

The BBC investigation/article quotes a solicitor, Julie Burton from Bangor. Julie rightly makes the point that parents of ASD children are often being told that they’re not adequately parenting the child. She comments “They’re told all they need to do is adopt particular strategies from parenting classes and all their problems will be solved, but it’s missing the point – you can be the world’s best parent, but if you’ve got a child presenting with really difficult behaviours, no amount of amazing parenting, or parenting courses is actually going to address the root cause.”

There are certainly some evidence based interventions and strategies that can make a difference to a person with ASD such as social stories, visual timetables, PECS etc., but at the end of the day the person will still have autism. The strategies that we were asked to implement and try (during our 3 year attendance at CAMHS) were all aimed at improving our parenting and not focused on helping us understand our child better.  They were designed to fix us (under the assumption that we were broken), rather than help our child.  As a result we missed out on crucial insights and opportunities to “get into his world” and help him cope and understand “the world” that he was living in a bit better.  Picture this, your child has a temperature and you take them to the GP, only to have the GP focus on your physical presentation.  Instead of physically examining your child the GP starts asking you a series of questions about your lifestyle and then gives you advice about how to dress better etc.  Most of us would be outraged in this instance, yet that is what it can feel like when you are the parent of an ASD child.  This is what often happens.  Of course there are some good clinicians out there and some good CAMHS teams, but all too often they begin their investigations focusing on the parents and not necessarily the child.  Sending the parent of an ASD child on a parenting course is akin to sending a parent whose child presents with gastrointestinal symptoms to a diet club.  It’s not addressing the problem.  The parenting strategies we were taught were based on the premise that consistent discipline and approaches would remedy our son’s behaviour.

There are several problems with this:

1. His behaviour wasn’t him being “naughty”. His behaviour was as a result of numerous factors such as not understanding the world around him, being frustrated because he couldn’t communicate, having sensory integration difficulties, becoming anxious at things like changes in his routine and ultimately being a square peg trying to fit into a round hole.
2. We weren’t poor parents who lacked skills. Okay, I admit we weren’t perfect…show me a perfect parent. No such thing exists. We all have strengths and weaknesses. We were doing our absolute best in very challenging circumstances.  Looking back on it, I think we did a pretty good job given everything.  Ironically, my son got a diagnosis when he went to school and the “professionals” began struggling with the same aspects of his behaviour that we had been for several years.
3. That made us feel that we hadn’t been listened to, or respected. The effect of that was that we did not work together collaboratively as a team for the best interests of our child. It’s hard to be an effective team when one party feels judged.
4. In the BBC article a mother of an ASD child talks about her child’s sensory processing and subsequent aversion to being washed or having his hair combed. She said “there are things he finds very difficult – like bathing, having his hair brushed and changing his clothes. So quite often his clothes are grubby, his hair is tangled, his hands are dirty, but he is healthy, he’s happy and we are trying to educate him”. But an unconventional appearance meant she had “a daily fear of being reported to social services. If you step out into your front garden someone can see you, and if you raise your voice in the house someone can hear you. You feel there are eyes everywhere and everything that happens they will interpret through their own filter, they won’t try to understand it from your point of view, they don’t necessarily know about the autism, so living in that sort of situation there’s a daily fear of that happening.”  This can be a very real fear if you have already had to jumps through “parenting course hoops” and prove yourself.
5. It was a waste of time. We know from research that the earlier the intervention the better the outcome. We spent our son’s early years focusing on the wrong elements (whilst we went to parenting courses). Sadly we will never know the difference it could have made to him?

 

In the 1970’s many parents of children with ASD were overtly accused of causing their children childhood psychosis (the then used label for ASD) through “cold” parenting.  In the 1990’s parents like me were made to jump through hoops for years being sent on parenting courses. It’s sad to think that in this day and age we still haven’t moved on much.  In my opinion we’re getting it wrong.  It’s time to rethink how we as professionals assess and treat these children.  I’m going to start with me and do exactly that and reflect on my own practice.