Monday, 27 July 2015

Are Relationships important?

Sophie will do what she is asked to do if she likes someone.

There. That doesn't sound too difficult, does it?!

But wait. There's more. I stopped too soon.

Sophie will do what she is asked to do if she likes someone, sometimes.

What I actually mean is: Sophie will do what she is asked to do, if she likes someone, sometimes, if she is in the right mood.

Scrap that. Sophie will do what she is asked to do, if she likes someone, sometimes, if she is in the right mood, if her day has gone well, if she knows exactly what she needs to do and why, and if she is not too nervous about the outcome or too scared of failing.

That nearly covers it, I think. 

I'm well aware that this statement makes it sound like Sophie does only what Sophie wants to do. That she is just anxious and obstinate. 

I've heard the phrase 'picking and choosing' in relation to Sophie more than once if I'm honest, and similar jibes about my parenting skills are slipped into discussions on occasion. 

I bite my tongue. I don't agree. They don't live with Sophie; how could they possibly understand the workings of such a different, unique mind? I haven't made up the diagnosis of autism, although some people inadvertently seem to suggest I have. 

I'd like to be able to say that I haven't parented either of my children differently, but of course as Sophie's difficulties became apparent, it was clear to me that I needed to parent Sophie in a way that was far removed from 'traditional' or 'standard' parenting. At the same time, I carried on parenting Tilly in that 'traditional' manner. I didn't change my style for Sophie because I fancied trying something new, because I was bored as a parent, or just because I felt like it. I wonder if it has crossed their minds that I'd love to be simply parenting in that traditional manner? Let me be clear; I had to alter my way of thinking and acting in order to accommodate Sophie's needs and in order to keep our family life calm and on track for all of us.

Of course, just like any child, there are things Sophie likes to do (speak Spanish), and things she most definitely doesn't want to do (hang around in assembly). We have to know when it's right to push her boundaries. We also have to appreciate more quickly when we may have made a mistake.

I've been asked recently if Sophie has challenging behaviour. Now there's a million dollar question.

Sophie is rarely violent or abusive, verbally or otherwise. Maybe that is because we use the right strategies to make her comfortable more often than not, and we don't push her too far. I'd still say her behaviour is challenging on a daily basis - more challenging than that of non-autistic children for sure. 

In our heads we have slightly different rules for Sophie than we do for her older sister, and the goal posts can move on a regular basis. We sometimes have to think on our feet. Mostly, we have to plan everything very well in advance. This is of course very difficult for Tilly to understand and accept, but she does a sterling job.

Now though, I must take this right back to the start. 

That certain someone. It has to be the right person. It has to be someone that Sophie has learned to trust or who she instinctively likes. Someone who can be flexible and listen to what she is telling them, verbally or otherwise. Someone who does not give direct instructions and just expect her to follow them. Someone who can phrase a demand to make it seem like a request by offering choices. Someone who does not talk too much or ask too many questions; someone who will give her peace, space and time to calm down once she starts to get upset.

Someone who has time to care about a very unique girl.

read more "Are Relationships important?"

Sunday, 26 July 2015

#RaceForLife. Together we are Stronger.

Today I got all emotional as I stood on the start line for our local Race For Life. Despite the relentless rain, the atmosphere was jovial and super friendly, and as I looked around at all the other ladies who had turned up this morning to run or walk 5 or 10k, I felt like I was the only one having to choke back a tear.
The numbers show research has helped immensely; there is still work to do though.
The positivity from all those signed up, and from the spectators, shone through, but just looking at the sheer numbers there definitely struck home what a deadly attacker we have in our midst. So many are affected by cancer, and it's the job of all of us to do what we can to fight it. It didn't feel like I was doing much, but at least I was doing something. It's affected my family of course, just as it has affected most families; we can't just lay down. We have to stand up to it.

I was very pleased to see this sign....
'Roar' by Katy Perry has become the unofficial anthem amongst PDA mums, and I imagine that Kelly Clarkson's 'Stronger' has a similar effect for those battling Cancer. I think we all need an extra bit of motivation from time to time, and music definitely helps with that. What also helps though, as in every walk of life, is money. Money for research, so that we can work out a way to stop this.

At the same time as supporting Cancer Research UK, I'd like to mention the wonderful Macmillan Nurses, who also help so many. Maybe if you have any amount you can give, you could split it between the two charities? 

My link is just one way to send money but it really doesn't matter how it gets there. It's also important to keep talking and sharing.

Those pink dots the other side of the lake were ahead of me, but only just...

#RaceForLife done.

I'm not a runner, but I may* do it again.

(*notice how I am not committing myself there...)
read more "#RaceForLife. Together we are Stronger."

Saturday, 25 July 2015

Disney PIXAR Inside Out film and Toy review

Have you heard about the brand new Disney PIXAR film which has just been released, Inside Out?

We've known about it for a few weeks in this house, thanks to YouTube and lots of advertising clips. Even before its release, this film seemed to capture Sophie's imagination like no other, and she's been desperate to go and see it. This is the girl who has only ever sat through one whole film before in her life - she's not easily amused and it takes a lot to hold her attention.

So we were delighted to be offered the chance to go and watch Inside Out today in Leicester Square as guests of SUBWAY, who are currently giving away Inside Out Messenger bags with every kids meal (while stocks last).

Earlier this week we were also sent a toy to review - a small soft Joy (one of the main characters in the film) who is available at the Disney Store along with all the other emotions. This toy retails at RRP £12.95 and is a beautifully made, quality stuffed toy, very like the character in the film and wearing the same outfit. 

Sophie and I had made a special trip to the Disney Store earlier in the week to see what other Inside Out products they might have.

Sophie decided to buy a talking Disgust (RRP £15.95). This doll speaks a random phrase every time you press her hand; there are 13 phrases so you don't get bored of them! Trouble is, Sophie would now like to collect every single one of them... there are plenty of other fab products too, from socks to highlighters and notebooks, and none of them should break the bank luckily. Here's Sophie doing her 'Joy' face in front of the display in store:

That same day we happened to find a book with the Inside Out story for sale, and I can't tell you how happy it made me to see Sophie trying to read this as we walked around. This is a girl who rarely reads, and gets bored with books very easily. As I realised she didn't want to be interrupted, I found her a chair in relative peace (in the middle of the shopping centre!) where she could read it all cover to cover. Happy days!

The film itself is just as amazing as we hoped it would be. It's the story of a young girl called Riley whose has to move to a different city with her parents, and we get to see inside her brain and how the 5 emotions (Joy, Sadness, Disgust, Anger and Fear) cope with this. It's very funny, and heartwarming at the same time. We recommend you go watch as soon as you can!

Disclosure: we were sent the Joy soft toy to review, and given tickets to see the film. All opinions on product and film are honest and our own.

read more "Disney PIXAR Inside Out film and Toy review"

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.


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.


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!

Email Me Subscribe Bloglovin Twitter Facebook Google Plus Pinterest Instagram YouTube
read more "Girls with autism and PDA strategies"

Sunday, 19 July 2015

Siblings {July}

There have been so many fabulous Siblings moments this month, as the girls have been getting on so well and playing happily together a fair amount. This was taken this evening, as the girls played happily on the trampoline together, hence the tousled hair (who am I kidding, it will be like that every day of the holidays!).

Now school is out, there are big smiles all round! Hopefully over summer there will be many more opportunities to practice with my 'special' camera - I think I need it..... but for a quick snap, this is not so bad I think!

dear beautiful
read more "Siblings {July}"

Thursday, 16 July 2015

Challenging behaviour and PDA: Does Tough Love work?

'Tough Love' is a phrase that many parents of children with Pathological Demand Avoidance (PDA) will have heard before, and those who have children with challenging behaviour too.

'You need to be more strict'

'She needs to learn boundaries'

'She's had too much chance to pick and choose what she wants to do'

'Just say no'

'Rules and routine will help'

Yes, all of these have been said to me. I wonder, quietly to myself usually, why people think I haven't tried all of this? Wouldn't my life be much easier if I had just stuck at the traditional parenting idea a little longer with our youngest girl, and she'd have eventually succumbed?

It's not that simple. It wasn't a case of me giving up and being too lenient with one girl. Our youngest girl, diagnosed with autism aged 2 and a half, is different. She ticks all the boxes for a diagnosis of PDA (criteria mentioned in my post Great Ormond Street visit) and standard parenting techniques did not work. Our eldest girl, not diagnosed with anything, responded well to all of those techniques, and has grown up into a very kind, caring, sensible, mature and well-behaved tweenager (yes, I'm biased, but I'm sure there are others who will confirm this).

So what are these different strategies for parenting children with PDA? Here's a great mind map which I hope will help those in school:

I also thought it might be helpful to give you an idea of just a few of the approaches we use.

1. Never say 'No'/Be indirect

'No' has always been our youngest daughter's least favourite word. We laugh about this a lot, because actually it's possibly her most used word herself, but she cannot bear to hear it from others. 'No' is final, it leaves no room for movement if you want it to be believed, and as such we would only use it with a firm tone in an extreme case, if she was in danger. That way we know that she will respond to it.

So how do we stop her from doing non- life threatening stuff that we don't want her to do? We have to talk around it. We give options and choices and explain why it's not a good idea, or why it's not possible. Sometimes this involves using a third party to shift responsibility, or even using a little white lie if necessary. So when she asks to go to McDonalds again, we don't say no, we give a reason: 'so sorry but we can't go because it's not open right now/we have no money left'.

How is this different to other children who may be just throwing a tantrum because they want to go to their favourite restaurant? It's the autism which leads to fixating on something and finding it very difficult to let go of an idea once it's in her head. It's the avoidance which means she can't accept the answer 'no', as that takes away control from her and causes anxiety. I'm sure plenty of parents use this technique with toddlers to avoid the tantrums without even being conscious that they are doing it, but it's not usually necessary once a neurotypical child gets past a certain point.

Other examples of phrases we use are 'maybe not today', 'that might not be the best idea, but how about... instead?' or 'not right now'. Actually it's amazing how many different ways of saying 'no' there are. It's not 'wimping out' to avoid a tantrum, it's strategically avoiding a meltdown. There's a huge difference (google meltdown vs tantrum to learn more).

2. Offer choices

Choices can remove the direct demand and help the child feel like they are in control of the outcome. It always helps to consider if there is a different way of getting the task done, and how important that particular task is in the first place. 'Would you like to brush your teeth now or after breakfast?' would be an example. Or 'which toothbrush would you like to use today, Skylanders or Disney Princess?' 

3. Always have a Plan B. 

And C, D and possibly even X. Life with PDA children is so unpredictable, and that's one of the major differences to living with classic autism or even Asperger's. Whilst PDA children like rules and routine to some degree (the autistic influence), they also like to be in control (the PDA influence) of what they do when, so rules go out of the window when other factors such as sensory issues come into play.

We'd love to go to a big family gathering for example, but we know we can't just do this without checking out the venue first, working out space and sounds, looking for a quiet area that our girl can retreat to when she's overloaded with sensory input, thinking about indoors and outdoors, and taking a variety of items and food which may help distract or prolong a good mood. With all of that, there always has to be a get-out, an escape route. We may not even make it in the first place, and we do have to accept that and hope that others understand that dragging her in anywhere would not achieve anything. Again, back to the difference between a tantrum and a meltdown, which can be long-lasting and have knock-on effects.

4. Use humour

PDA children generally respond well to humour, or 'fun' challenges. 'I bet you can't do x', or 'I'm not very good at y, can you help me?' are two ways to approach this. Being serious with these children tends to make them feel more anxious and will lead to them shutting down more.

So back to my initial question. Does Tough Love work? It may well for some children with challenging behaviour, especially those with Oppositional Defiant Disorder. The difference between ODD and PDA is a whole other post (for now you could pop over to read more about this at another great blog (, but in a nutshell children with ODD are not autistic. I suspect there are not many children with suspected PDA for whom tough love will work, though most parents will naturally try that approach first. My hope is that schools and practitioners listen to and work with parents to discover what works for each individual child.

There's more PDA strategies for parents listed at Also see the document at 

Great guidelines for teachers and other staff can be found at

I love these words taken from the third document, as I think they sum up PDA perfectly:
  • However great the stresses of finding ways to teach a child with PDA effectively, they are nowhere near the stresses that families have to cope with; and one of the biggest stresses on families is the fear that the school will give up on their child. You can make an enormous difference, not just in helping the child to tolerate demands and to learn, but in enabling parents to meet the child’s continuing needs at the same time as creating a happy family life for brothers and sisters.
  • Whatever the difficulties, this is probably the most interesting and potentially rewarding child you will ever meet, who will challenge your ingenuity and flexibility every working day. This can be a growth experience for you and for your professional skills. One head teacher said ‘We never realised how interesting she was until after she’d left us, and we missed her’, reflecting perhaps the difficulties of having had to work without the support of guidelines.

There is much still to be learnt about PDA and as always I feel I am merely scratching the surface. Always open to any questions though - this is life as we know it!

Linking up with the lovely Victoria for #PoCoLo

Also adding some useful documents from

read more "Challenging behaviour and PDA: Does Tough Love work?"

Wednesday, 15 July 2015

Is there a school for high functioning autism? This is our PDA story (week 15)

At the beginning of the year, I decided to open my blog up to other families living with Pathological Demand Avoidance (PDA) because I felt there were so many truths to tell about how this condition is affecting so many. Fourteen brave people managed to find the time to put some part of their lives into words for me, and I'm very grateful to them.

It occurred to me that now might be a good time to do a little update about our own PDA story.

Fairly regularly I get stopped and asked  'how is Sasha doing?' by parents, either at school or when I'm out and about.

The temptation to reply 'oh, fine, and Tamsin's not doing too badly either' springs to the surface occasionally, but for the most part I am pleased that people care so much. I don't want them to stop asking, support comes in many different ways and I am always grateful for it.

Sometimes I think I'm way too honest though, as I do find it difficult to give the 'fine' answer, which I know is what most people would like to hear. For the most part, my answer of late has been 'up and down', which does actually describe the life of a PDA family pretty well.

Life is unpredictable; we lurch from a weekend where Sasha refuses to leave the house (no, we can't make her) to one where we manage to achieve an almost 'normal' happy family outing - albeit punctuated with regular stage whispers of 'I want to go home now'. I look back on the family photo albums and appreciate that we have been able to achieve so much more with Sasha than I sometimes thought possible - but none of it has been easy. None of it is easy in the same way that it is easy for us to take our eldest daughter wherever we want to go, whenever we choose to go. There's always more thought, more planning, alternative choices (Plans B, C and even X) and the knowledge that it just might not happen.

It sounds crazy. I know. It feels crazy. As was once pointed out to me 'but you are the adults, you should be in control'. Some days it feels like we are not; Sasha holds all the cards. We retain the control by forward planning and managing life as much as we are able. We do this at the same time as trying to bring our eldest girl up in a way that we'd always envisaged for both our girls - boundaries, rules, routine, rewards. Standard stuff. There's nothing much standard about PDA.

Sasha is about to move into Year 4 at a mainstream Junior school. Year 3 has gone 'OK', and I measure that by the fact that she does still attend school every day without me having to drag her there. She attends, but she only occasionally takes part. She joins in with some sessions, on a good day, if the topic has caught her attention, but the rest of the time she spends sitting at her desk, on her own, in the corner of the classroom. Or she works outside the class with an assistant. She often chooses to read quietly to herself. She rarely records any work. As I walk up to the classroom every morning, I see beautiful wall murals with pictures and writing from all the other children, but hardly ever any done by Sasha. It's not that the school haven't tried; they have, and I applaud them for their effort.

I've always said that we are lucky that Sasha is consistent, and she acts the same way at school as she does at home. On the other hand it is a real shame; from time to time I wish she could conform just enough to get through school tests and assessments so we can really understand what level she is at. Her consistency has helped us immensely though, as I feel others have quickly understood when I've explained that you can't make her do anything she doesn't want to do. They may not believe me initially, but the PDA strategies are all that works with Sasha. I've had over six years of trying to perfect them; I'm not there yet. I know though, that I will continue to meet people in life who believe that Sasha should just do it, that we give her too much choice, and that being 'stricter' would work. I have to sigh inwardly, give them as much information as I can, and let them make their own mistakes.

Sasha needs motivating in a different way from all the other children. She is never going to be one of the pack, and this of course makes life in a mainstream school very difficult. Both school and Sasha have coped admirably up until now, but at any point, if the right support is not in place, there could be a breakdown. It has been proven already though, that with the right motivation, from the right people, in the right environment, Sasha can thrive.

Then we come to my biggest fear. The age of 11. Secondary education. It is plain for everyone to see that Sasha will not cope in a school where there are thousands of children and sensory issues galore; the idea that she would walk from one classroom to another to do any subject that she didn't care about is quite honestly laughable. Mainstream secondary schooling is unlikely to work and yet we have no suitable alternative provision for Sasha in this county.

In Surrey they do. Limpsfield Grange is a state run, small secondary school specifically for girls on the autistic spectrum. For girls who need a bit more care and support. ITV1 will be showing a documentary about this school tonight at 1040pm, and I am so looking forward to watching. I've met and talked to both teachers and girls from this school and they are all amazing. 

I wish we lived in Surrey. I'm not sure why our county cannot provide any establishment like this; it's not as if they can claim there is no need. Today I've heard of a child locally who is currently on a part-time timetable at Junior School, due to start secondary next year, and yet has been turned down for a place at a SEN (Special Educational Needs) school. Does the LA really think that if he is part-time now at Junior School then everything will magically be alright at secondary?! No, I don't believe they do. I believe that they don't have enough spaces at 'special schools', and that they are not taking into account the needs of all children in their county. Of course it all comes down to money; as a parent of a child with additional needs I am reminded of that frequently, which as you can imagine really helps in an already stressful life.

'Can't help won't' is the phrase I'd like to leave you with today. It embodies PDA in a way that nothing else can. This is not willful naughtiness, and 'just not wanting to do something'. It's the fact that PDA children can't help the fact that they won't do it. They don't choose to be naughty; it's the demands which cause them great anxiety and often lead to them looking for a way out. A brilliant article has been published on the Huffington Post today; click on Can't Help Won't to read it. It's not short but it explains everything about PDA so well. Please do read to the bottom - you may even see yours truly mentioned!


For more information about PDA, please visit the PDA Society website at, or The PDA Resource

If you click on the links below they will take you back to previous weeks of 'This is Our PDA story' where you can get a flavour for what PDA life is like.

Week 1  

Linking up with the lovely Jenny from Let's Talk Mommy for #ShareWithMe.

read more "Is there a school for high functioning autism? This is our PDA story (week 15)"