Stan’s Story

Description:

Already having another child with Asperger’s enabled Stan’s Mum to really understand the differences with PDA, both in terms of how it presents and in terms of handling strategies. Having persevered in order to obtain a diagnosis of ‘atypical autism with PDA traits’, Stan’s Mum then trained others in the use of PDA-friendly strategies to great effect. However demand avoidance remains Stan’s ‘default setting’, in times of stress.

Stan’s older brother has Asperger’s, and we had a sense of déjà vu when he was about 2. He didn’t seem as obviously ‘different planet’ like his brother, but definitely had a developmental disorder of some kind. He enjoyed pre-school and was cooperative when there, but was extremely reluctant to attend. Initially he had some audiology testing, and then aged 3 was seen by the same neurodevelopmental paediatrician same who had diagnosed his brother.

After a few visits she suggested PDA. I looked it up and it was him all over. We researched PDA fully, applied the theory and family life improved immediately. Once I realised that PDA was such an accurate fit for Stan, I knew that I would need a formal diagnosis to back me up or nobody would take any notice of me!

I requested an autism assessment but it was rejected at panel with a standard letter stating that he seemed to be coping well. I wrote a masterpiece of a letter back disputing this, and explaining that I would be able to support him because PDA strategies were already working wonders, and that I could also train the adults around him, but not without a diagnosis. I was told that they couldn’t diagnose PDA – I explained that a diagnosis of atypical autism would suffice. Ultimately, the psychologist who diagnosed Stan agreed that a more accurate description of his particular presentation was called for, and his official diagnosis was ‘atypical autism with traits described as PDA by Dr Elizabeth Newson’.

A differentiated diagnosis has been vital for us. All the adults dealing with Stan need to be briefed and on board. I can’t risk people being too thin-skinned or taking his attitude personally and losing their temper with him. His diagnosis backs me up when I explain how Stan works and how he needs to be treated. It also gave me the confidence to push for an EHCP against the local authority’s initial reluctance.

Already having a son with Asperger’s means that I can really see the differences with PDA. I always say that dealing with my Asperger’s son involves ‘thinking round corners’ whereas dealing with Stan involves ‘thinking around corkscrews’! My husband and I work very hard to keep Stan calm, he can’t learn when he's stressed or upset. We always try to look past his current behaviour for what might actually have been the initial cause. Monitoring his stress levels is also key, I constantly have one eye/ear open for signs of agitation and then act quickly to distract him and diffuse the situation. We try not to talk when he's in a temper, other than by repeating a mantra like ‘you will feel better soon’, because when his shutters go down processing a conversation just adds more demand. Keeping quiet also helps me be open to see/hear when he is 'throwing me a bone' - sometimes he will suddenly change gear with a small request/concession and if he gets his way he can trot off quite happily as if his was what he wanted all along. It wasn't of course, but it helps him save face and if I let my emotions get in the way I might refuse such a request out of spite. The only area where we have zero tolerance is over violence or damaging property.

We’ve had great success using these strategies. In the past he’d go from go from stressed to furious then to sad and exhausted. He now generally bypasses anger and goes straight to desperately sad. Whilst this sounds awful, it’s is actually better for everyone. But I suspect PDA will always be the default setting in times of stress, fear or antagonism.

We’ve been fortunate with school – they’ve been genuinely flexible and understanding. It’s always accepted that I might have to drag him in kicking and screaming or out of uniform, whatever it takes to get him through the door. He’s been with his classmates from day one and they’re all very fond of him, though on closer observation I can see that he doesn’t really keep up with their conversation outside class. Stan’s reception teacher adored his older brother and was prepared to spend hours lying under tables in corridors boring him back into the classroom! His teachers do deals with him and let him think he’s ‘got one over on them’ in order to get him to conform and any work he does is appreciated even if it’s not what was asked for.

So things are going well currently. I think it has helped that I’ve been able to work part time and be there for him outside school hours. I don’t know what the future will hold, and suspect that secondary school will be difficult for him. Stan and his big brother are best friends and have plans to live and work together in the future. Who knows?

 

Download Stan's story