The following questions have been answered by Ruth Fidler, Education Consultant, NORSACA Children's Services.

 

Q. We have heard some say that self awareness is beneficial, however our 11 year old daughter likes to use diagnoses as an excuse to avoid demands or to justify difficult behaviour. How can we educate her so that she gets the benefit from understanding her diagnosis?

A. In order for any of us to mature as individuals and to develop the skills we need as adults to self regulate and to get help when we need it, it is paramount that we work towards a better self awareness. This is no different for children and young people with PDA. It is not unusual for children initially to use their diagnosis as a licence to justify all sorts of behaviour and sensitivities, however, there are a couple of important points I would make in response to this.‚Äč

Firstly, be careful of how much information you give at a time. Offer what is helpful and true with maybe just a touch of what the next step is at any one time. In the same way as we wouldn't give a typically developing 6 year old a gynaecology lecture when they ask where babies come from, give your child the information that will help them understand themselves at their own pace, and that will help them move to the following stage in their questioning. Remember that choosing not to raise their awareness of their own condition is as much of a choice as is doing so. Not doing so runs risks in itself which tend to be that the young person develops a subtle nagging sense that they are different from most other people; that other people seem to find lots of everyday things more straightforward then them; and they may come to the conclusion therefore that they are somehow to blame, or are somehow lacking. This might have serious implications for their long term emotional well being and even their mental health.

I would suggest starting with what they are able to do well. Highlight differences between people, and emphasise that only some of those differences are difficulties. Raise their self esteem as well as their knowledge of their condition (this may at times be a very challenging balance to get right, I understand). Remind them that if there are things that are additionally tough for them then they need (and deserve) additional help so this is why it matters to understand their PDA. Build on their aspirations for their future - if they want a positive adult life that will involve, as it does for us all, working with their skills and not dwelling in an unhelpful way on the areas that they find harder, but getting help in those areas.

And finally I would stress the importance of opening this subject in collaboration with professionals involved within school and others if appropriate. Your child may ask some challenging questions and may use their behaviour to work through their developing self awareness so it is really important that other people who support them tell them consistent information, as well as being prepared for any consequential reactions. It may also be helpful to talk to grandparents, babysitters and siblings to at least let them know that you are starting to have this sort of conversation with your child.

Q. How do schools include children with PDA in classroom learning?

A. We talk a lot in our training and consultancy work about synchronising the degree of demand placed on a child with the level of their tolerance available at any given time. This is a key concept in the answer to this question. The 'art' of educating children with PDA, as well as in managing their behaviour generally, is in adjusting the balance of demand being made by the adult, with that of the child’s tolerance at any given time. PDA affects different children to a greater or lesser extent and some children will need many more adaptations making than others. In addition, the amount of adaptation a child may need can depend on the setting, on the people around them and can change over time.

The most useful approach is a very flexible approach to organising a teaching situation which some teachers and some classrooms lend themselves to better than others. It means sometimes adhering to the practice of the possible rather than aspiring to the ideal. It means remembering that overall, it is really important that this child feels sufficiently good about being in school that they are motivated to come back the next day. It means protecting and promoting their emotional wellbeing whilst minimising any disruption to other pupils. Sometimes children with PDA are learning alongside their peers, whilst other times they are working separately. I would say that if they are working separately, there should always be the goal that they feel part of the group in whatever way is achievable. That may mean reporting back to the class/small group about their project, or it may simply mean aiming at a more inclusive experience the next day rather than segregation being assumed. It can often be effective to 'launch' an activity or task to the group, which is then pursued individually, followed by bringing the group together again later in the session. It can also mean choosing priorities carefully about when and for which slots of the day the child with PDA is expected to join a larger class.

Remember that less structured times of the school day, such as breaks and lunchtimes, are often more stressful for many children on the autism spectrum. All careful judgements which rely on an underlying understanding of the child's needs and personality as well as on a flexible organisation within the educational setting.

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