Autism Awareness Week: a personal reflection

Autism is something I am aware of on a daily basis so I thought I would share our experiences.

On Sunday, my grandson was 10 years old. He was diagnosed as autistic when he was 5 after exhibiting ‘challenging behaviour’ in mainstream school. Later, at 8, he was also diagnosed with ADHD and is now on medication to control the extreme anxiety he feels as a result of that. The medication dampens down his behaviour to some extent and he is more than happy to take it. Fortunately, he is not showing any signs of the physical side effects that can lead to stopping the medication.

We are also fairly sure he ‘ticks all the boxes’ for PDA (pathological demand avoidance) which is a subset of autism. Our local child psychiatric unit is one of those that does not believe in extra labels and will not apply PDA as a label within their diagnosis. I understand their reluctance, and indeed everyone’s reluctance to label children at all, but an ‘official’ diagnosis of PDA would be helpful for schools in providing some direction for their management of the child. Because our grandson is extremely clever, all the management techniques have been those normally used for what used to be called Asperger’s syndrome (also a subset that the clinic do not use). PDA plus ADHD is not a combination that responds well to this approach.

A year ago the school and local authority managed to get J into a special school. This is a school run by a private trust, taking children from a number of local authorities. It is not specifically a school for autistic children but rather for children with challenging behaviour. There are a few absolute criteria a potential pupil must meet. They must be deemed capable of following a normal curriculum, and they must not be an ‘escape’ risk as the school has no desire to resemble a prison. They should not be adamant about refusing to attend school. The classes are tiny, the teachers and support staff are highly trained and motivated, and so far, things are going well.

The school effectively treats the PDA in its normal approach to dealing with challenging behaviour. The rules and sanctions (and rewards) are consistent and fair, and the children respond well. There tends to be some disruption whenever a new child joins the class, but things settle down once their needs are being met. We are thrilled with the progress, both academic and social, that J is making.

The school is 5 – 16 so we are hoping to avoid what could be a nightmare of transition to high school at 11. We also know that the school readies the pupils for a normal GCSE range of subjects, although the options are slightly limited purely because of staffing constraints. This is not the case in any of the special schools that the local authority provide (they claim to prepare students for exams but these tend not to be in ‘academic’ subjects) so they fund J’s attendance at the private institution. We just have to hope the funding remains in place until he is 16.

We know we are lucky. We have a child who is academic and who is finally beginning to shine as he should in the classroom. He reads at an adult level and helps the support staff with their spelling… His handwriting, after years of struggle in a mainstream school, is now (one year on) exquisite, though he still prefers typing. His comprehension is excellent though his autism means that while he will immediately understand who, what, when, where and how, the extra question of why something happened will often mean very little to him. Maths is still his favourite subject and he has expressed a desire to be a maths teacher, though I don’t think he would ever have the patience, or be able to deal with children who were struggling with the subject. However, we have high hopes that he will find a career in maths or IT. He also loves art but his main artistic interest is in creating cartoons for online use. He is learning French, enjoying music, and excelling at science.

An ideal 10-year-old to be proud of? Yes, of course, but he is still only at the level of perhaps a 5-year-old in his social interactions and can be difficult to manage in social situations. However, he has friends, both at school and outside it, and seems to be making progress, at last, in this sphere too. If he had to attend a mainstream high school I think he (and we) would sink under the stress. As he will, by then, be at perhaps a 6-year-old’s level of social interaction, you can no doubt imagine how a large high school would impact on him – and how he might impact on them.

We know a number of children who have faced school exclusion as a result of behaviour that in retrospect was probably due to being on the autistic spectrum. Autistic children (and adults) react badly to change, to extreme noise and movement, to any kind of sarcasm or attempt to explain anything with figures of speech. They tend to respond to questions very literally: ‘would you like to open the window, J?’ is likely to get the answer ‘no’ with absolutely no intent to be unpleasant or impertinent.

I think probably autism awareness week is a good time to reflect on the changes we, as a family, have experienced during the year. It also, as I said, coincides with J’s birthday. If we look back at the last twelve months, J is much happier, sleeping better, more self-aware, and increasing his self-esteem on an almost daily basis. He is consciously trying to modify his behaviour and reactions to fit in with the expectations of both adults and children. As a result, although he is not always successful, the entire family is under less strain and we have high hopes for the future.

4 thoughts on “Autism Awareness Week: a personal reflection

  1. After reading this I thought I would do some reading up on PDA, I did a questionnaire and my son came in just below the score for it. This has been interesting to read as I do think he displays some traits of it. It’s been a good insight into some of his difficult behaviour. He doesn’t seem as strong as J, but there is an element there, and combined with his stronger autism, makes it also difficult. I am going to look into it more. It can be almost impossible to get S. To do some things which he doesn’t want to do. And has no sense, of course, of other people’s views, and very little understanding of authority. You simply cannot use the last resort technique of ‘do it because I told you too, since I am the parent and the one in control’. That just simply will not work, at all, it just creates more problems.

    • Absolutely! So of course mainstream teachers back themselves into a corner and wonder where they went wrong! J ticks all the boxes for PDA but isn’t as ‘bad’ as some other kids we know. Partly, I think, because of the extreme intelligence which makes him want to at least appear to try to conform – he wants the ‘rewards’ that can bring. (It’s as easy to bribe him with extra maths homework as with anything an adult would normally consider a reward.) But we have to be careful not to phrase things as demands or commands. It’s fascinating. and not nearly enough research has been done yet. It’s also quite sad, because teachers and other authority figures think they understand a bit about autism but are totally out of the loop on PDA. And strategies that work with many autistic kids just don’t with J – and possibly with S! Some of the ‘symptoms’ (not sure what else to call them) were more obvious when he was younger. He tried to refuse demands placed on him by himself, his own body, never mind by others. For example, he would not admit to hunger, thirst, tiredness, pain, or toilet needs. Those problems are receding a little as he matures physically. It’s obviously up to us to carry on reading and researching.

  2. It is great to see that J is doing so well:) I know it’s been a long struggle for all of you.

    Your own insight into autism is very interesting and, as you know, at the moment we are wondering whether there are some elements of the spectrum in G’s behaviour, which is often challenging and very different from that of his brothers. It’s hard though as so often ‘bad parenting’ is blamed for challenging behaviour from a child or that it’s just the child’s personality (disobedient, wilful). Your description of PDA, and looking at a few websites, does tick some PDA boxes with G as well, especially with resisting demands, anxiety, obsessive behaviour and not wanting to join in socially. Hopefully we will have answers there soon, one way or another.

    At least now there is awareness that a child isn’t always just ‘naughty’ and there might be an underlying cause that makes their behaviour different..

    Thank you for being so open about J, it’s only through conversation that autism can gain understanding within the wider community.

    • I think it’s important that those of us who have got to a stage in the ‘journey’ where we have done some research, fought our way through bureaucracy, etc. share our experiences and knowledge with others and open up the conversation about ‘challenging behaviour’. It’s a conversation society as a whole needs to have. Children are rarely merely ‘naughty’ even if the majority do the occasional ‘naughty’ thing. We accept that adults can be very different and we should realise that children can be very different too – but schools try to fit everyone into the same round holes! Most children who show challenging behaviour can be helped to reach their potential, but it does need society to discuss the issues. I hope you get some answers about G and that those answers lead, as with J, to progress!

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