Living with Autism

I have mentioned before that my son is autistic. He's now 18 and attends a foundation course at a local college. He has very long hair, dresses like a goth, enjoys heavy metal and power metal music, adores Transformers and Japanese anime. He doesn't think he has autism - he thinks he is perfectly normal. In fact he thinks everyone is trying to pigeonhole him into being a person with special needs when he feels he is just fine. This can be a problem as he shrugs off help of any kind and will not accept that he is a bit different.

I knew before he was two that something wasn't quite right but I didn't know exactly what was wrong, it just seemed strange that he didn't have any interest in talking. I actually thought he might be deaf but he was checked and found to have normal hearing at around 20 months. It was a real struggle to get anyone to take any notice - the health visitor said he was "a late developer" and the GP wasn't really interested.

Sadly, worry about my son's development took a back seat as just before his 2nd birthday he was scalded on his chest and upper arm which involved weeks in hospital and months of dressings and eventually pressure garments. In addition, around the same time my 4 year old daughter was diagnosed with a blood disorder that we battled with for the next 7 or 8 years. On top of everything, we also moved house, but at last I found a new health visitor who was more inclined to listen to my concerns about my son's development, and we were referred to a paediatric consultant who tried in vain to assess him. My son either couldn't or wouldn't co-operate, but finally there was recognition that something was not right. He was referred to a children's centre where he had weekly speech therapy sessions; there was very limited progress, and eventually at age 4 he was referred to an educational psychologist. She told me then that he had an Autistic Spectrum Disorder and decided that he would need to go to a special school where they would be able to carry out further assessment.

He was so difficult in those years, constant tantrums, impossible to communicate with, but so beautiful he could make your heart melt. He spoke in "echolalia", repeating parrot fashion whole episodes of Thomas the Tank Engine, but couldn't ask for food or drink, he had to be buttoned up tight and covered from neck to toe, couldn't bear to wear a tshirt or shorts in the summer and never went anywhere without a hat on. He would never try anything new - food, games, TV programmes, activities - even hated wearing new clothes. He lived in a little world of his own, almost as if he was a cartoon character - I'm sure he wished he was Toby the Tram.

To cut a long story short, I never imagined the little boy who lived entirely in the world of Thomas, Toby and James, would ever grow up to have any kind of independent life. It may be some years yet before he'll be able to live on his own, but he can travel to Colchester on the train by himself, can cook his own meals (a limited menu at the moment, but he's learning) and shops for his own clothes and music. Admittedly, he doesn't have good social skills but he has lots of online friends that share the same interests as him and most of the time he's happy. He loves shopping but is absolutely hopeless with understanding money though he functions well enough with a bit of help (he can always phone me on his mobile to ask if a £10 note is enough to buy something for £7.50!). And he is now one of the most talkative people you can imagine (admittedly, he loves to talk almost exclusively about things that interest him) but what an enormous change from that silent little 2 year old.

We didn't have a great experience with education; the local provision didn't really meet my son's needs at the time, but I'd like to hope things are improving. The National Autistic Society's campaign Make School Make Sense asks for improved training for teachers and better provision of schools. I hope that in time there will be more support for people with autism and their families. As the song goes: things can only get better!

A busy couple of days

The last couple of days have been a rush. I had planned to leave work early on Thursday, to get organised and away early on Friday for the drive up to the West Country, but typical of things in local government (which for my sins, I have the privilege to work in) I was called upon at the last minute to produce a pointless paper exercise. This meant that when I got home from work at nearly 7pm, I had the start of a headache and a total loss of energy. So I ate a big bowl of my patent homemade vegetable soup and went to bed early.

Up at the crack of dawn on Friday morning (thankfully without the headache), I cleaned out the rabbit hutch and run (doesn't need much cleaning - our two bunnies are quite the cleanest rabbits you could wish for - they are perfectly litter trained, and no trouble at all), did washing, ironing, cleaned the house from top to bottom and shopped for favourite and manageable meals for AS who has college on Friday and didn't want to make the journey to Bath and Bristol. I am learning to give him a bit more freedom and let him stay home if I go away overnight. As big as he is, it is very hard to leave him on his own, particularly knowing that I am a three hour drive away. It is amazing to me that I can do this at all, when he was a toddler and didn't (or couldn't speak) I never knew that he could be as independent as he is. Being autistic is not something you can measure, and some people might not even notice that he is different. He doesn't have any "Rain Man" skills (unless you count encyclopaedic knowledge of Transformers!) and he struggles with the concept that he has any kind of special needs. He daily claims his right to self-determination and it gets easier every time to give him the chance to prove that he can look after himself. His most enormous step was taking the train to Colchester - alone! Now it is a daily journey for him - including the long walk to the station (although he can catch a train the bus is out of the question - there are too many pitfalls and he doesn't want to even try).

So with my amazing son taken care of, I set off for Bath to see my amazing daughter. I picked her up from the University, we grabbed a bite to eat and I left her at the stage door where she has a chorus part in an amateur production of Hello Dolly. She loves musical theatre so much, and has been involved with a local group at home since she was about 10. During her first year at university, she missed it so much she just had to find a group in Bath to join and so she auditioned with Bath Operatic and Dramatic Society and was really thrilled to join the chorus. She loves dancing (she is in the Latin and Ballroom Club at University) and music, particularly from the shows. Although she loves the theatre, she is also very conscious of exams rapidly approaching, so next week she'll be back with the books!

I paid a flying visit to my sister in Bristol (at 6.00am Saturday!). We went to walk her dogs in the local park - but found a rave still in full swing. Neither the police or the local council were particularly interested when she phoned them, and the drum and bass line could still be heard at 9.00am when I left. I am SO glad I don't live in a city any more....

Mum and I then went to have lunch with AD in Bath and then to the theatre for the matinee. It was a lovely show (though if I am honest, I am not a huge fan of musicals, despite supporting my offspring on many occasions, and even taking her to the odd West End production - I did fall asleep once in Les Miserables to her everlasting embarrassment!). The costumes were lovely, and the dance routines were spectacular. I actually had a hard time recognising my own daughter what with the big Edwardian hats, wigs and stage makeup!

Then back to Mum's (with Mum singing Hello Dolly the whole way home) to load up my car with half the contents of her shed - we are giving away all her old garden tools, a manual typewriter and assorted other items on Freecycle and to a charity that takes tools to Africa. Then I drove home and was back around 10.30pm to find amazing son was absolutely relaxed about being alone for 36 hours. I shouldn't have worried. He'd baked himself a batch of cookies (from a packet mix - I am working on teaching him how to follow a recipe and this is the first step - following the instructions on the box) and even washed up some the dishes! (The slightly burnt baking tray was left for me).

Today, I plan to put my feet up for a couple of hours and finish my current read, Mr Golightly's Holiday by Salley Vickers, before I mow the lawn and tidy up the front garden.