There have been a number of TV shows recently which feature autism, and showing that autism has many faces and that as a spectrum, all people with autism are different despite sharing some unique characteristics.
Last night there was a programme which highlighted Autism in girls, and the programme was focussed on three girls who go to the Limpsfield Grange school in Surrey. One of these girls has a diagnosis of PDA.
Just like with many forms of autism, each person with PDA is different and the severity and how the condition affects them varies, as do the co-morbid conditions.
It is also important to point out that I am looking at this through the eyes of a mum with a 7 year old, not a teen- who knows how dinky will develop.
However what has to be said is that one staff member- Julie Taylor, did not seem to grasp the concept of PDA, the recommended strategies or the variations on levels of demands. Julie’s comments started with
with pathological demand avoidance what she really wants to do is be in a low demand, low stress environment, that would be sort of like a hospital bed where everyone was running around after her looking after her and doing that
firstly- NO! With pathological demand avoidance the choice isn’t all or nothing, the trick is to find one of 100 things inbetween to help reduce the anxiety and hope that it prompts the outcome you are looking for. Low demand can have many different looks, and low demand isn’t the same as no demand. It is a gross misrepresentation of what PDA is and how to approach it. It is completely the wrong attitude. The head teacher didn’t help matters with
She needs firm boundaries early on, absolutely consistent and non negotiable
This is absurd! There needs to be some non-negotiables, of course there does. her safety and other peoples safety be that staff or others needs to be number 1 priority. However, there needs to be flexibility and negotiable routes in order for a child to feel that they can comply. Actually to start with only pre determined non negotiables should be the rules, allowing the child to build trust and a relationship with the school is important if the placement is to be a success. This is obviously general, Beth may not have a severe manifestation of PDA which is why it wasn’t until 14 that mainstream became a major issue. She may be able to take on board a higher level of initial demands before additional demands take her over the edge. Whereas in my experience with Dinky she couldn’t cope with even learning in a play based environment but really couldn’t manage in an academic and therefore more demand filled environment of KS1, Beth at 14 would likely be in KS4. the PDA handling guidance from several professionals, but mostly based on the work of Sutherland house school and Phil Christie, suggests non negotiables, but absolutely advocates flexibility. and the head went on to say
she needs tough love and actually she is no different from anyone else
Well in a school of children with Aspergers and more classic autism presentations, having PDA does make her different, but it is the way they handle it (which probably shouldn’t include tough love), which will see her able to join in with the others.
It was quite upsetting to watch a distressed Beth try to avoid her PE lesson, she said she didn’t feel well, anxiety can manifest in stomach pains and in feeling unwell. So this should not be seen purely as an avoidance but also seen as a natural reaction for a young person with PDA when their anxiety sky rockets at the constant demands that is a PE lesson.
A teacher tried to say PE is like any other lesson, PE is nothing like maths, the demands of changing clothes into PE kit, and then being told how to do an activity, being coached on an activity which tends to include raised voices and direct language due to time constraints, physical safety, and generally being outdoors or in a large area and may not be heard if soft spoken and were long winded. Maths you go in, the rules of maths are the same, there might be a new way of doing things, but this is generally a discussion without having to proceed without listening to lenthy conversations about how the method is put into practice, or reading instructions and following them. So I am sorry teacher, but no, it is not the same thing.
Beth asked to be left alone, sometimes being given the chance to calm is all that may be needed, however she was then told that there is an expectation (which is another word for a demand of her) that that is what she needed to do. I hope by 14 Dinky would be able to still stay there instead of trying to escape or going into crisis. Then to be told she ‘doesn’t have a choice’ is just not a PDA friendly approach whatsoever! Praise was then mentioned, and praise has to be done carefully. Some children respond some don’t. Dinky likes praise for things she has done herself, but wouldn’t accept it for something she was forced or coerced into doing.
Again Julie Taylor comes in ‘with pathological demand avoidance’- which is a very general sweeping opening statement.
we have to put a very tight, ridged structure around that student, and she will not like it. and it is a bit like reining in a horse, and training a horse, in a way….it is almost like a wildness there that you have to capture and train
I’ve heard lots of stupid things but to give the opposite strategies to those suggested by the main professionals in PDA, and then it is like training an animal- this has to go high up on that list and quite frankly it is appalling! In all actuality, ‘with pda’, actually the majority of students would need some structure and routine, but it needs to be flexible and the more choice and ownership the child/young person has the more likely that the structure would be adhered to.
On watching this back I felt that Abi, who doesn’t have a diagnosis of PDA, was given a much more PDA friendly approach than Beth, who has a diagnosis of PDA. Which was astounding!
We do not live far away from this school, but as things stand right now, I wouldn’t send Dinky there. I just feel that they are not unlike most other special schools I visited which tried to say they understood PDA and had students with PDA, but showed that they do not have a whole school knowledge of PDA, and It makes me question who led the training and what their qualifications in PDA are.
For Educational or general strategies for PDA you may wish to look at information from the people who know PDA best-
on the website they have lots of resources including free downloadable leaflets/booklets/visuals, published papers, and links to published books on PDA. None of which would advocate this school’s approach to PDA.