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.
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.