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.
---------------------------------------------------------------------------------
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.
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.
---------------------------------------------------------------------------------
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?!
To follow me on other social media channels, you can find me at the following links or click the icons below!
Facebook: www.facebook.com/stephstwogirls
Twitter: twitter.com/stephstwogirls
YouTube: www.youtube.com/c/stephcurtis
Instagram: www.instagram.com/stephstwogirls/
