I've been watching The Autistic Gardener on Channel 4. I tried to get Tristram to watch it with me. Partly because I thought it might inspire him to come out and help me in the garden - a stunning array of carefully cultivated 6 foot high weeds - but also I was hoping to explain autism to him. He doesn't really understand that he has autism, you see. He knows he has epilepsy and migraines because they are very real with symptoms such as severe jerking, stabbing pains in his eyes and being physically sick. His self-awareness of experiencing autism appears to be completely lost on him though. Despite knowing other people with autism he doesn't seem to recognise the same difficulties in himself.
The gardeners, including the presenter, the aptly named Alan Gardner, are all on the autistic spectrum disorder and they all seem to be aware of their difficulties. So much so it is easy to laugh at some of the situations, because THEY do. They know there are awkward silences or that they might 'go off on one' over their obsession, lose concentration, etc. Please don't get me wrong, I would never dream of finding somebodies difficulties funny or a reason for entertainment. But equally there are elements to autism that are amusing.
Let me make it clear - having autism can be very difficult and, let us be honest here, the gardeners on Channel 4 are on the more able end of the spectrum, and quite right too. It is a gardening programme so it is not unreasonable to have people with a slight interest in plants, landscaping and some actuall gardening skills. Personally I think the programme has got the right balance between sensitivity of the difficulties that they face, their strengths and weaknesses and humour. And that is how it should be.
The only thing with watching the programme is something that I am constantly aware of, as are many parents and carers of children with autism. I am waiting for the letter or phone call with the well meaning relative at the other end telling me that Tristram must have a talent and be able to do a job because they have seen people with autism totally landscape a garden! Yay!
Okay - reality check. Alan Gardner clearly has to constantly remind his crew what they are doing, get them back on task and also allows each individual to take time out when they need it. Being on the autistic spectrum he understands their needs and they will have been supported and supervised at all times. Tristram is encouraged to do some regular work around our smallholding to make sure he has a break from being inside, keep fit and active and has a change from being stuck in front of his game/television or other activities he would engage in all day if he were not encouraged to change.
At 16 he helps to feed the horses, feeds the sheep, clean up and muck out, fills water buckets and hay nets, brushes wood preserver on sheds and fence posts, etc. Some of this he can do without direct supervision - we can ask him to put the water hose on - but we might have to ask him three or four times in different ways to make sure he understands.
We cannot ask him to do a series of things - he can only understand key words in a sentence so too much information and he is completely lost. He cannot cross the road by himself so one of us will go across with him. Each time we get him to say when it is safe to go and we can be stood at the road for a good 10 minutes before crossing because ANY car is potentially moving. Despite our best attempts he has never learnt road safety.
Now Tristram has recently been diagnosed with epilepsy and has started taking Epilim so he is more tired than normal as his dose is being slowly increased. Before he used to be do jobs slowly - now he works on snail power. The poor lad does seem drowsy at times but it wears off before his evening dose. He does his chores three times a day, each time lasting about half an hour. It's not a full working day. He will never be able to work. He has skills and abilities in certain areas but he loses concentration easily (sadly there aren't many jobs as testers for vintage computer games or the ability to watch Lord of the Rings and Harry Potter films over and over again which he will do for hours, of course...)
So thanks very much, well meaning relative, but we know what Tristram can and cannot do. And we will continue to encourage him to keep up with his skills which he can lose very quickly if he doen't do them regularly. He is able to follow a calendar but since leaving college he appears to have forgotten how to tell the time.
Yes it is fantastic that a few people with autism have featured on a programme but their difficulties are still with them once the cameras have stopped filming. And deep down I know that Tristram's problems are more severe and complex but one thing he does share with the people on the programme.
He is happy and enjoys many different interests.
He leads a fulfilling life with different activities.
He is creative.
And best of all he has a sense of humour. Okay - not necessarily one that we would recognise!