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Tuesday, 21 July 2015

Girls with autism and PDA strategies

Last week, a programme about a school in Surrey for girls with autism aged between 11-19 was aired on ITV. The documentary about Limpsfield Grange showed us the individual stories of three very different girls with autism and I was hooked.

It was a fascinating insight into an area which often goes unnoticed. Currently only one girl to every four boys is diagnosed with autism (according to the National Autistic Society, the most recent study confirming this was done in Sweden in 1993). There is much information out there covering why this is, but in a nutshell it is believed to be down to the fact that girls are much better at masking their symptoms and so are less likely to be diagnosed. Many girls seem to be able to learn more easily than boys how to copy social behaviour, but it's almost like constant role-playing for them and can lead to many mental health issues. Interestingly, Pathological Demand Avoidance seems to affect boys and girls equally.

There was sadly some consternation in the PDA community around the methods used to manage one of the girls at the school, who is diagnosed with PDA. A couple of comments from the teaching staff seemed to go directly against the strategies recommended by the PDA Society (see Educational Strategies and Handling Guidelines), and they certainly made me feel uncomfortable as I watched the programme. My gut reaction at the time was that I wouldn't be happy sending our girl with PDA to that school, but with hindsight I've come to realise that you can't always rely on a TV programme to be telling the full story. Editing by production companies means only a certain amount can be shown, and the only way to know if it would suit my daughter would be to visit myself and speak directly with staff. Which I would, if it was in our county (sighs).

Anyhow following the show and the many discussions that followed online, the mother of the girl with PDA who was on the show got in touch with a letter to explain her views on how the school has helped her family. I thought it was a very timely reminder that every child is unique, and that what works for one child may not for another. Likewise, what works for our child at this young age may not still be working when she is a teenager, and it's important to keep all options open. Every family will have a slightly different view on the best approach for them, and I think it's important not to judge others, but to listen and learn.

So I'm delighted to be able to reproduce that mother's views here and hope that it will provide the answer as to what their specific situation was and how it worked for them.


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Hi everyone

I hope the attached document helps to put your minds at rest that all our family, including now Beth, agree that the methods used by Limpsfield have worked wonders. Perhaps because of Beth's age, maturity and understanding of PDA, the usual methods of indirect requests and turning things into a game etc have not worked for quite a while - she saw through everything and therefore if anything it made her more determined to NOT do the thing you were trying to get her to do! 

I have always been quite boundaried at home but outside the home other people weren't and so I think perhaps the reason it is working now is due to the fact that because  at Limpsfield the staff were all trained and all working together as a team to be very consistent in their approach, it meant that she got exactly the same message from everyone. We also followed it through at home and also with close friends who were involved in Beth's life‎, which meant the same message was constantly being reinforced. This I think was key.

I (and I think staff as well) felt that if we allowed Beth to avoid demands rather than deal with her anxieties and  help her to face those anxieties and work through them, it was akin to reinforcing the idea that demands really are something to be feared, especially if everyone around them (and in particular those they look to for protection) are  helping them to avoid them. Personally I felt it meant the list of things Beth avoided  just got longer the more she was 'allowed' to  avoid.  Deal with the anxiety and not just the avoidant behaviour which is basically the result of that anxiety - that is what I feel anyway. Obviously the lower demand environment of Limpsfield also helps, rather than a busier mainstream school Beth was in previously.

‎Anyway, the below is just our story based on the very individualistic approach ‎ that Limpsfield took with Beth (as they do for all their students) so I am not saying that what we have done will work for everyone but what I can say is that Limpsfield certainly have done the right thing for Beth.

In response to those questioning Limpsfield on their methods for PDA children or the documentary for how it was portrayed, I can only speak from my personal experience of living through what was, at times, a nightmare with Beth (whilst also having another child with PDA). However, this 'tough love' approach that people seem to be focusing on has, in my opinion, worked wonders, though I would say there is more 'love' than 'toughness' in the methods used. As with any one off programme, Girls With Autism was only able to show a snapshot of Beth's story (and indeed her individual story and not one that makes out that it is representative of all PDA children, as every child is unique and a mix of not only their autism but also their character, life experiences, the way they have been nurtured etc etc), but her transformation is outstanding. For her, let me explain how I view it. Before this 'tough love' approach was taken, Beth's anxiety levels were so high that she was at breaking point and therefore she felt so out of control with her emotions and with the adrenalin rushing through her body from the anxiety that she found herself running all the time, trying to find that control, always to the edge, always away from those who were trying to help (imagine here a frightened horse). The more that boundaries were removed in previous schools, because they were felt to put her under pressure (and these schools did their best to follow pda guidelines), and the more they allowed her to try and control her situation (by not attending lessons, not doing homework, skipping games, coming home etc), thinking this would reduce her anxiety, the less and less she was then able to manage. Instead of this making her feel freer and more in control, she actually felt more and more out of control and therefore anxious, as she would keep coming up against new and even more scary places and situations that she would have to try and control and manage on her own and the further she ran the more exhausted she got.  The more she avoided school, the less like the other pupils she so desperately wanted to fit in with she became, and this in itself caused her more anxiety as her peers became less understanding. More emotions, more fear, increasing suicidal thoughts, because the further she ran, the more alone and unsafe she felt. The further she ran, the further away she was getting from the people who could protect her.

So, Limpsfield, TOGETHER WITH PROFESSIONAL GUIDANCE FROM CAMHS and other professionals, along with our backing, set about putting some tight boundaries around her (like building a pen around the horse, or a scaffold around an unstable building), all the time being like the horse whisperer, praising her for little things, loving her and providing for her needs, gaining her trust. At first, as anticipated, she kicked against these boundaries, she wobbled against this scaffold, but as they remained firmly in place and she realised they would not move, that the scaffold was helping keep her upright, and that the staff etc would continue to love and support her and weren't going to give up on her as others had, she began to calm. They would put up a metaphorical fence, explain what it was for and why it was there and then leave her awhile to digest it and then they would keep coming back to reassure her that she was safe and loved, to make her laugh to let out her pent up emotions, and whenever she showed signs of calming they gave her even more attention (a bit like praising the good and ignoring the bad on a larger scale - helping to shift her focus of attention from the negative to positive, as she had got into a very negative cycle). And then she calmed some more, and some more. There was no need to keep running, and fighting, and trying to find ways to control, which in itself was not only exhausting for her but was causing horrendous amounts of anxiety, because she didn't feel (and at times wasn't) safe being just left to run and escape into her own dark thoughts.  For Beth anyway, rather than feeling less anxious when she had controlled something, the more anxious she felt as the more she felt she had to do next time to maintain that feeling of control and get more attention, (which was and is how she feels people care), but it became impossible to maintain. It could never be enough, like pouring water in a sieve. So, once these boundaries were fixed and secure, in not very long she stopped fighting them and as she did she started to relax against them and use them for support. She started to approach the people helping her and actually let them help. She started to feel safe and secure now she wasn't having to fight all the time and we realised that her anxiety was reducing and after a bit more time (as she was determined to prove she wasn't meant to be at Limpsfield), she also accepted and admitted herself that her anxiety was reducing.

Beth has to (and because she really wants to) be able to function in society if she is to have a future, and society is full of rules and boundaries. Limpsfield are not seeking to cosy her up and keep her feeling like she can assert control over everything for a peaceful life, just so she can get through her school days so she can then become someone else's problem,  they are seeking to prepare her for a very real world outside of school and one where she will be able to live in it, rather than just exist through it.  Beth is beginning to understand through this consistent, loving, but, yes, perhaps sometimes tough, approach, that boundaries are usually there for safety and security and that actually her anxiety can reduce when she stops battling for control, as fighting is anything but relaxing!  She still likes to believe and feel she is in control of everything of course, but staff at the school are helping her to control things in positive ways, such as focusing her control towards her future, on revision and controlling how she does academically so that she can fulfil her dream of becoming a nurse, and using her experiences to mentor younger girls. She has gone from a reading age of below six years, to over 17 years in just 12 months, so I have nothing but high praise for Limpsfield. 

On the surface, at a glimpse, perhaps it may not seem like they are following PDA guidelines, but whatever they are doing it has ultimately reduced Beth's stress and anxiety. The proof for me is in the confident, happier Beth we all see today. Beth has always had a keen sense of right and wrong and always wanted to do the right thing, as she is a very loving, caring girl and therefore she also now feels good about herself that she is often now able to do a lot (but not all!) of what people ask of her. Once she felt safe, she was able to look around her familiar and secure surroundings and see what tools were there that she could pick up and learn to use. She is no longer barely surviving, with all the tools lying around her unused through fear of losing control if she doesn't run from them, but she has learned to use the tools Limpsfield have provided, to not only survive but to live and thrive!  It may not help with all or even any other PDA children, but it has definitely worked for her and indeed my PDA son, and they (and the rest of the family) are certainly happier for it. So, I  for one am thankful that Limpsfield bit the bullet and they tried something a little bit different. Thank you Limpsfield Grange and for the documentary for getting people talking about PDA. We are all on the same side, trying to do the very best for the individual we love.

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The worries in the PDA community were centred around the fear that mainstream schools (or any other schools for that matter) may take Limpsfield Grange's comments about 'Tough Love' very seriously and start imposing strict guidelines which many of our children would not be able to deal with. I'd like to reiterate my comments that every child is an individual and will respond in different ways - the best any school or practitioners can do is work together with the family to establish what works best for that particular family.

For more reading around girls with autism I can highly recommend the book 'Parenting Girls on the Autism Spectrum', by Eileen Riley-Hall. This was one of the first books I read after we received our girl's diagnosis, and it's still with me now. Eileen has two girls, both diagnosed, both very different, and her book is very positive and practical at the same time, covering issues such as education and friendships.



Some of the girls from Limpsfield Grange have produced their own book, called M is for Autism. This is written from their point of view and gives a great description of how life feels for them. It's a fascinating read and would help anyone understand a little more. 

Did you see the programme? What were your thoughts?!

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