A note on learning to write

I came downstairs this morning to find this. Written completely independently by Little Miss M to guard her LEGO last night and I thought I’d share her experience of learning to write, and how it’s all coming together in a very PDA friendly way.

[The drawing isn’t relevant to the text, it’s just what she chose to write on. I actually drew it a week or so ago in a ‘draw a YouTuber challenge’ she set for me.]

writing 4

Sometimes she’ll ask me how to spell certain words but in this case she’s figured out how to spell the words herself either by memory or sounding them out and I think she’s done amazingly. “Don’t touch the LEGO below”. Check out the registered trademark symbol (R) after LEGO!

Little Miss M is home educated, she’s never been to school and hasn’t practiced writing everyday like a child in school would traditionally do. Asking her to write something triggers extreme demand avoidance and anxiety. Consequently we stepped back early on and gave her the freedom to write only when she instigates it. As writing has been rarely relevant to her life until recently, it hasn’t happened often. Whenever she does write though, it’s incredibly meaningful and as you can see, she can still form letters and write words despite the lack of practical experience.

It’s been fascinating to see how writing has developed and become relevant to her. When we introduced letters to her as a small child she enjoyed using a dry-wipe letter writing book but wanted to do it her own way and wouldn’t follow the arrows to form the letters. She also loved making her own alphabet chart with foam letters and using it to copy the letter shapes from. She then went through a very short lived phase of copying writing but the novelty soon wore off and demand avoidance set in. Over the next couple of years she’d very occasionally write, mainly labelling drawings, making signs or writing her name and preferred to write mostly in capital letters even though she learnt lower case letters in her dry-wipe books initially. We went with the flow and never made any attempts to encourage her to write when she refused to and we didn’t correct any mistakes, ensuring she felt no expectations whatsoever. In time she began to notice herself when letters or words weren’t quite right and would ask for help to get them right.

During this time she also started to notice punctuation marks in her books and that they were also on the computer keyboard and so started writing by typing on the computer to use them too and over the last 6 months or so she’s been writing by typing more and more – using my phone to write funny notes and to send WhatsApp messages to Daddy, searching the internet for images and videos, making signs in Minecraft etc. and has found this experience of writing very rewarding and enjoyable. Predictive text and auto fill initially gave her access to do these things more independently and with less frustration and as a result she’s personally motivated to write both by hand and by typing much more now than she ever has been and happily does it whenever she has a meaningful need to.

I’m seeing how she can now spell some words from memory and she’s started sounding out some words which she doesn’t know how to spell. If she asks me how to spell something or to write it for her, I do as I’m still very aware of demands creeping in and putting her off so I keep it light and enjoyable and in no way an expectation or demand.

Learning to write has happened very naturally and has been totally at her pace and within her control, with no expectations on her to do it. It’s come entirely from her personal desire to do it in order to communicate information and to find things. I was worried early on about demand avoidance preventing her from learning to write and how that might hold her back but giving her the opportunity to master these skills in her own time and with no expectations from us or anyone else has, so far, eliminated any demands, making it achievable and enjoyable.

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A note on demand avoidance

Demand avoidance is what gives Pathological Demand Avoidance its name because it’s considered to be so central to the difficulties experienced by a person with the condition. A person with PDA will obsessively resist and avoid the ordinary demands of other people and everyday life. [Masking can confuse things though, and make it appear that someone can co-operate just fine in a particular social setting (including around some family members) but this causes its own set of difficulties when away from the setting].

We initially thought that Little Miss M’s demand avoidance was just a sign of her very strong will and mind of her own, which we totally respected and embraced. As a very small child she would do the opposite of what we asked, she’d resist normal daily tasks like nappy changes, getting dressed, refusing to open her mouth to eat a meal and brush teeth, resisting sleep in every way possible and wouldn’t play games or read books we suggested.

When she could talk she’d start saying no to everything we said and would kick and scream when we tried to get her to do something. Everything we wanted her to do was such a struggle to achieve and she’d always end up in tears. Then with better language skills came excuses and distractions to manipulate the situation to her advantage. She became a master negotiator but rarely did what she’d say she’d do which would result in the struggle just being delayed.

As she got older, anger started to become an issue when she couldn’t have her own way and she’d hit or throw things and slam doors. She’d moved on to ignoring us too when we spoke to her. More avoidance strategies emerged like being an imaginary character who either couldn’t do or didn’t have to do the thing we asked, changing the subject in such a way you have to go along with it (asking questions about very complex or sensitive things which you feel you must address there and then) and many, many more.

It became clear to us that this was more than a strong will, Little Miss M needed to feel in control to an extreme degree due to the lengths she’d go to, to do things her own way and not co-operate with us and how upset she’s get if we’d insist. It became obvious that not having control caused huge difficulties for her. But why?

PDA is best understood as an anxiety-driven need to be in control and avoid the demands and expectations of people and everyday life. This anxiety-driven need to be in control means that Little Miss M’s brain perceives there to be a very real threat of danger when she’s not in control and her fear and anxiety levels increase to an incredibly high degree. Her survival instincts take over and drive her to do all she can to protect herself from this perceived threat. This accounts for many aspects of PDA including why demand avoidance is triggered when she’s faced with the demands and expectations of other people and everyday life.

Demands are all the things she feels she MUST do or must do in a particular way. It’s this feeling of having to do something which puts it out of her control and everything has the potential to do this, even her own ideas can sometimes become a demand because the pressure to do them becomes an expectation she must meet. Pleasant things like being offered an ice cream or a fun game to play can even become unpleasant when it feels like a demand because they aren’t within her control. Everything has the potential to feel like a demand when it comes from someone else or when there’s a set time to do it or a time limit attached, when there’s an expectation to do it, when it interferes with what she wants to do, when there are instructions to follow and many other complicated reasons which aren’t always clear. Her ability to tolerate demands changes all the time too, making her reactions difficult to predict.

What is clear though is what demand avoidance looks like so whenever we see this challenging behaviour in Little Miss M, we know she’s experiencing anxiety and it’s a cue to us that she needs support to feel more control. Demand avoidance can take many shapes nowadays including all the things we mentioned she did when she was younger. What she will do to avoid a demand depends on how much control she feels she has lost and what her overall anxiety levels are at the time. If she is resisting, taking charge or becoming distressed and upset or angry and aggressive though, we know the situation is out of her control and causing her anxiety.

So how do we manage this?

With tons of love, patience, flexibility and respect for her needs and dealing with everything on a moment by moment basis because her anxiety levels fluctuate all the time. We remember it’s a hidden disability and that it’s her behaviour which makes it visible.

We ensure our lifestyle and her education allows her to have a lot of autonomy and we’ve removed as many unnecessary demands as possible so she isn’t constantly bombarded with demands and overloaded with anxiety. This makes life easier and happier for her and gives her more opportunities to accomplish and achieve more because she’s in a better state of mind. We are especially relaxed about her biggest triggers (bedtime and food), allowing her a lot of control and choice in these areas so she feels more in control of them and views them as less of a demand and we go with her flow and what she is up to doing as often as possible so she feels as in control of the days as possible.

For demands which are necessary, we’ve established helpful strategies to try and help distract her from the feeling of danger. They only have a chance of working if her overall anxiety is low, so the autonomy and reduced demands above have impacting on the frequency of these working. Presenting a potential demand in a way that gives her control and/or with humour, silliness and in a way that appeals to her (usually imaginary play and being characters she loves or using her special interests) can sometimes distract her brain from the fear response and help her to overcome demand avoidance.

She’ll always need an element of control over how something is done for this to work, otherwise she will do all she can to avoid the demand and regain control so we don’t worry so much about how something is done, just that it’s done with the least amount of anxiety possible. We think of this as an opportunity to work with her to figure out a way to overcome a difficult situation. We listen to her, empower her with a say in how something could be done and support her with doing that so she feels safe and in control. This can make some things more achievable but not all.

If demand avoidance is triggered, for whatever reason, we first and foremost always remember she cannot help doing it. It’s not a choice to react this way or a learnt behaviour; she has no control over it. It’s her brain reacting to what it perceives as danger and anything she does is a reflection of her fear of that very real feeling of threat, no matter how irrational it may appear to us. We don’t take it personally and try to remain calm while acknowledging her feelings.

Once we’re in her shoes and can see the situation through her eyes and appreciate how her anxiety feels, we assess whether or not another distraction will work. Most of the time, this means trying it but if her reaction to the demand is indicating very high anxiety levels, we know distraction will be ineffective and only serve to increase her anxiety further. We have to be very creative with distractions, quickly thinking of something which appeals to her or makes her stop and laugh to defuse her anxiety and shift her attention away from the fear of danger for long enough to be able to involve her in how we can achieve the task in hand. This is ideal because it’s giving her some control over the situation again by allowing her to be in control of how she does it. Flexibility and patience is key here.

If distractions don’t or won’t work and it’s not essential to carry out the demand straight away, we won’t push it but also try not to set another time for doing it because this is usually agreed to at the time but inevitably never happens because the expectation to do it at a set time becomes an even bigger demand. We do make it clear we won’t do it now though so she knows the threat has gone away and her anxiety can start to reduce. Then we try to re-visit it at a later time when her anxiety allows. We are flexible though and if her anxiety doesn’t allow for it, and it’s not necessary for today, it will wait for another day. If it is essential for that day, we continue to be calm and patient, doing whatever we can to help her anxiety reduce so we can achieve it when anxiety allows.

Understanding Little Miss M’s demand avoidance and her anxiety has made us re-evaluate what things really are necessary and how important it is they are done in a particular way. Things we would have thought essential before are no longer as vital in our thinking now, not when we realised how much anxiety and distress they can cause if pushed at the wrong time. Having a bath on a high anxiety day isn’t essential, nor is changing out of pyjamas. Her doing certain things herself isn’t essential every day and we know she’ll do them when she can. A biscuit or snack just before bed or in bed to reduce anxiety is OK as is falling asleep later if needed. Brushing her teeth on the sofa while watching TV is better than not brushing them at all and some days not brushing teeth at all is better than a meltdown…

It’s a journey though and none of this happened over-night. We still don’t always get it right and don’t always know what to do because nurturing a child through PDA is a challenge; everything takes careful consideration and thought and it can be exhausting and time consuming to achieve the simplest of things. Demand avoidance isn’t the only difficulty arising from the anxiety-driven need to be in control either and those additional difficulties are just as challenging and in some cases more challenging and take huge amounts of stamina, patience, understanding and flexibility to support and nurture. But we do our best and with each challenge we learn a little more to help us all to grow.

A note on links to PDA related material

Accessing material related to PDA is so important on this journey. Gaining understanding about PDA and recognising how it presents in Little Miss M has been essential in supporting her correctly and put us in a better position to ensure our lifestyle and her environments work to her advantage and to help her develop understanding of herself. Knowing why things are the way they are has also brought us a new level of acceptance and given us peace of mind.

I’ve been like a sponge during this first year since discovering PDA, soaking up as much information as I can find to understand this complex spectrum condition as fully as possible and thought I’d link to everything I’ve come across which has helped me do that.

I’ve transferred the content from this post to a dedicated ‘Links’ page on the blog which you can access below as well as on the main menu. I’ve done this so I can add new links and resources as I discover them and keep it all up to date in one place.

Links

 


I’m still learning and discovering new perspectives and sources of understanding so will copy this to a separate Links page on the bog which I can keep adding to as more things come up. And please share with me anything I haven’t mentioned which you think will benefit others on this journey too!

A note on education

We chose home education for Little Miss M before we knew about PDA. Here’s more on that plus how PDA influences her education and learning.

When it was time to start thinking about compulsory education for Little Miss M, we considered the two options available to us in England – school or home education. We took lots of things into consideration but one of the most important was her need for autonomy because although we didn’t know about her autism or PDA at this point, we recognised that she excelled and things flowed along better when she had autonomy and she struggled and things became difficult when she didn’t. Learning initiated or controlled by someone else was usually met with resistance and if she did cooperate, which was rare, she’d do it a different way (“this is how I do it”) or with little enthusiasm and it wouldn’t stick.

We opted for home education because we loved that it could be tailored to her personally and nurture her strengths and passions and allow her the freedom to learn in a way and at a pace that suited her about anything as there aren’t any curriculums, timetables or targets to follow. Learning would be meaningful to her and she’d have the autonomy which was so important.

Several years later, we’re still loving our home education journey and all its many benefits and we’ve found it lends itself really well to supporting Little Miss M in all aspects of her life with PDA, not just her education. Since discovering PDA we’ve been able to continually make the adjustments needed to support her learning in the best way as well as the necessary adjustments to support her in life. We can live at a slow pace so the normal demands of every day life which cause her so much anxiety like dressing, washing, eating and sleeping are relaxed and can be tackled calmly without pressure to do them quickly and at particular times and we can work each day around her tolerance and anxiety levels because we don’t have anyone else’s schedule or timetable to keep to. It’s not without it’s challenges but life and learning blend together and compliment each other very nicely.

How PDA influences Little Miss M’s learning
The theory that you learn best when you’re interested in or motivated by a subject applies to many people, I know it’s true for me, but because of PDA this approach and autonomy is essential, otherwise Little Miss M’s brain shuts off and cannot learn. If she’s told, expected or even encouraged to learn about a subject or participate in a structured activity or task which is initiated by someone else, it becomes a demand. Her brain sees the demand as a threat to her safety and extreme demand avoidance kicks in so she can protect herself. Anxiety builds as does her resistance against the demand and her brain is unable to process any information, let alone learn.

Depending on her current level of anxiety, her demand avoidance can display in one or more of the following ways:

  • distracting the person;
  • changing the subject;
  • negotiating the terms or trying to take over;
  • putting it off by saying she’ll do it later or next time;
  • ignoring the request and doing her own thing instead;
  • becoming distressed and upset or angry and aggressive;
  • point blank refusal.

If pushed on a demand, her anxiety and need to regain control escalates very quickly and the more extreme her avoidance becomes.

PDA makes it very difficult to achieve any learning when it is structured or is initiated by someone other than her. We have found some distractions which can help her get around demand avoidance in these situations to enable her to first and foremost feel calm and safe and allow her to enjoy and learn from these sorts of activities and tasks but they only work if her overall anxiety levels beforehand are low and if she has an interest in the activity or subject and a desire to learn more about it. The distractions which can help include:

  • communicating with lots of enthusiasm, jokes and silliness
  • making it funny
  • pretending to be someone else (a favourite character or person)

Under the right conditions and if implemented before the feeling of threat becomes too great, doing these things seem to distract her brain from the demand and the threat disappears allowing her to bypass demand avoidance. Other things which can help include making the task or activity relevant to her or tying it into a special interest of hers and allowing her as much autonomy as possible during the task or activity. It’s important she has 1:1 support and attention from an adult who knows her well to keep an eye on any signs that her anxiety is increasing so adjustments can be made when necessary. These may include giving her some control over a specific part of the activity or using humour to diffuse stress. The adjustments require quick thinking and creativity, individualised to her, in order to manage the growing anxiety quickly.

Whilst these distractions can be helpful in allowing her to access and take part in some structured educational activities and tasks and for learning to take place during them, we’ve found she can only tolerate them for short periods of time before her interest wanes and anxiety and demand avoidance increases. And given it’s so dependant on her anxiety levels being low and her being interested in the task, these distractions aren’t always reliable or effective methods of ensuring she learns. Natural learning, however, due to its fully autonomous nature is incredibly effective and we’ve found that the vast majority of her learning comes naturally.

There are natural learning opportunities everywhere and her inquisitive mind soaks up so much when conditions are right and she feels in control. She will pick things up naturally from everyday experiences and conversations and she learns and practices skills in real-life situations without anxiety.

She will also ask questions. Some questions we’ll answer from our own knowledge and some we’ll discover the answers together but we have to be creative in the way we do this so the act of finding an answer doesn’t become a demand to avoid. How deeply we look into a question depends on her level of interest and how much she is ready to know and she’s very spontaneous and her interest can often just be in that moment so we try to tackle her questions then and there because we’ve learnt it can become a demand for her to avoid when we go back to it at a later time.

Some things she’ll work out herself without us being aware she’s learning it, through play and pastimes and what she sees, hears and reads (she taught herself to read) and amazes us when she comes out with things from seemingly nowhere. I really value play and pastimes and can see how they go much deeper than just simple games or interests. While she’s playing or spending time doing the things she loves, she is learning, making decisions and coming to her own conclusions, she is growing as a person and learning valuable and relevant skills and I can see life through her eyes and understand her perspective (in the games she comes up with and the things she says) which is a wonderful insight.

Masking complications
Like other children with Autism and PDA can mask their difficulties when they first start school, we’ve come to realise that Little Miss M developed the ability to suppress and mask her demand avoidance after we started home education. We started attended home education groups and arranged workshops, classes and trips based on Little Miss M’s interests. She was very sociable and wanted to be with her new friends as often as possible so always wanted to do these structured activities. During them she would still display her need for control by putting her own twist on things and showed an element of demand avoidance but was able to mask a lot of it so she could take part in all the activities and meet-ups we went along to. After each event though, she would experience an explosion of intense emotions as the supressed anxiety and fear was released, followed by sheer exhaustion, though we didn’t understand this at the time. I thought it might be because she was having so much fun, she didn’t want the activity to end (transitions had always been difficult) or she was emotional because of tiredness at the end of the day.

Her behaviour was very different at home, demand avoidance was rife and she was more demanding and controlling than ever but she kept saying yes to doing these activities and we still didn’t know about PDA or masking at this point so didn’t realise what was happening. After a while though cracks started to show and she became much more demand avoidant and resistant to the activities and meet-ups we had arranged and the public mask started to slip. She struggled so much to concentrate and stay on task and would become very vocal in her resistance and would scream and cry if asked to listen or do it a particular way and social interaction with friends became much more stressful and fraught. It was around this time we discovered PDA and over the 6 months that followed, the number of things she was able to attend reduced until she reached total refusal to leave the house.

Looking back and knowing what I do now about her PDA and masking, we were doing too much. Her days were full of too many demands and expectations and her anxiety had no way of decreasing enough between activities to be manageable the next day and the next day and so on. We had small gaps where she could rest but with all the other ordinary demands of every day life, her anxiety didn’t ever reduce enough and this accumulative effect, along with her growing awareness of her fears and frustrations culminated in what another parent described as life refusal.

I’m so glad the mask has gone. It may appear that she can cope with less now than she could 2 or 3 years ago but she wasn’t really coping at all. Masking enabled her to do things her friends were doing and on the surface she enjoyed those experiences but it came at the expense of her mental wellbeing. The long-term consequences of masking was a build up of extreme levels of anxiety which took months of drastically reduced demands to recover from; constant battles with herself; exhaustion and being unable to truly be herself. And I don’t think she really retained much knowledge or ability from those masked experiences anyway, not compared to what she retains from the things she learns naturally. When she was masking most of her mental energy went into fighting the demand avoidance so there wasn’t much capacity left to learn.

A suitable education
With all this understanding of her PDA and having learnt from our mistakes and experiences, we’re now working towards a much more sustainable way of learning for her. We make sure we follow Little Miss M’s natural rhythm and do what she is able to and allow her total autonomy over her education. We spend lots of time doing things which keep her calm and help her to feel in control so her brain feels safe. With lower anxiety levels she has started to participate in some structured group activities again and we make sure she has plenty of recovery time afterwards because although she wants to take part in them and is no longer masking, they still cause anxiety because she doesn’t have control of the situations and the people in them. The distraction strategies help to limit anxiety but recovery time is essential.

Learning what we have about her PDA and seeing the results for ourselves, we’ve come to the conclusion that natural or autonomous learning is by far the most suitable and effective way for Little Miss M to learn. It’s anxiety and demand free as she has control of it and isn’t under any pressure or expectations to do it. As a result, she has a mind full of knowledge about a variety of subjects and in her own way and at her own pace she has learnt and continues to learn all the usual life skills we learn as children as they become relevant to her. She’s passionate about learning and her creativity knows no bounds.

The key to getting all of this right was understanding PDA and her complex presentation of it.  Without that we wouldn’t have establishing what support she needed to access a suitable education for her individual needs and her mental health and future would look very different.