Life as an Aspie....

I never was any good at languages at school – not even Welsh, and coming from the Rhondda Valleys, that’s saying something. But if there is a universally difficult language to master, then it must be teenage “Grunt”. I have tried to master this most non-expressive use of sounds for some time now, but until this week, with little success

But then I got to talk with my son Andy. 17 years ago he was diagnosed with Asperger’s Syndrome on the same day as was his older brother Chris. It was not an easy day – we thought Chris might have the Syndrome, but until then had not realised that Andy did, too. A long journey has followed, and to some extent we have learned to adapt to their differing needs, within the limits of this condition.

Until now

A few days ago, I tried to talk to Andy about what might happen when he finishes his 2 –year Course at Uni this summer. There was a possibility of his retuning for a third year, but whenever I asked him about it, I got very little response – sort of Grunt noises. And then he started to tell me about how difficult he finds life as an “Aspie”. Until that moment, I had no idea that this was how people with Asperger’s can refer to themselves. It was an eye-opening 90 minutes, but gave me more of an insight into Asperger’s in general, and his Asperger’s in particular, than I’ve had for 17 years. Having asked him for permission to publish this on my blog, here are some of the highlights:

Andy has great difficulty functioning in large groups. The noises, sounds, and inability to “read people” – i.e., their reactions – makes crowds both tough and threatening. If he comes to church, this is why he will sit in the balcony – at least it’s a smaller group.

Andy can get distracted easily. This has been true for a long time, and he will often play with small objects, appearing disinterested in company. He now tells me that he finds company somewhat chaotic, but if he can distract himself, even for a few minutes, it relaxes his thinking enough to stop the panic, and then he can join in again. To realise that mental chaos is normal for Andy is very humbling

He has made a personal association that for him, clear thinking is facilitated by movement. He enjoys being on a swing, and finds travelling as a passenger in a car quite soothing. In a car, his apparent “staring into space” times are in fact some of the rare periods of peace for him. He will often pace a room when he is trying to work out a problem – the movement really helps.

He finds touch difficult. This can be especially true if he is taken by surprise, or when someone “lays hands on him” – especially when they might be praying for him. He views it as “forced contact”, and it is highly intrusive. Consequently, he has developed a marked “startle response”, finding sharp sudden noises (e.g. a telephone) quite disturbing. Noise that he can control – e.g. his own music – is subject to different responses – it is the suddenness of intrusive noise that is disconcerting. Hugs outside of the family are rather difficult for him, and even within the family, he will not prolong a hug.

I thought I knew that people with Asperger’s (or AS, as it is often referred to) think in different ways. Within his own world, Andy has a very strict logic, and variations in routine, or big changes, have to be assimilated in a very different way. For most of us this is not easy: for Andy, it can be a lot of very hard work, which often goes on internally. His ability to process life, events and relationships takes up a huge amount of thinking time, most of which is interrupted by intrusions - even saying “hello” can be tricky.

His Uni course has proved difficult, as the students on the course have halved in the space of the 2 years he’s been there. Therefore any attempts to make friends have been extremely difficult, as they often leave. He has therefore felt lonely, but acknowledges that in many instances, he actually prefers to be alone. This has not helped him on the course itself, and he is now concerned about what his future holds. We would value prayer as we seek viable work opportunities for him

Above all, I realised that Andy is not being stubborn, or selfish, when he appears to be withdrawn. He is trying to make sense out of a rather threatening world, whether it be at home or at Uni, in the best way that he can. The fact that he has achieved anything at all is remarkable. He thought that me writing a blog about our chat might be good, as it might help others to understand him a bit more. I certainly noticed a lightening in his spirit once we had talked, as I guess he had been thinking about it for a long time.

Pat’s Thought for the Day
Made me realise again how thankful I am for a God who understands us in every detail, who knows our thoughts, and who works on our behalf. We can trust Him to prepare the way ahead for each one of us, however we feel, and whatever life throws our way.