I think that most people in this day and age have some understanding of what Autism is. Rain Man played a part, albeit in portraying an autistic savant. The MMR debate has raised awareness even if it has put the fear of god into new parents across the land when they are cornered into feeling like they have no choice but to toss their bright-eyed toddlers into the Mother of all lottery machines and hope that they are not the chosen ones who go over to the Dark Side.
I knew a little bit about Autism in the same way that I know a little bit about the political situation in Gaza. But I now guiltily admit that the fact that Autism is something that no one wants their kids to have was knowledge enough for me in those long-ago, pre-labelled days.
Now, I'm not really a "joiner" type. I don't mean that in the biblical DIY sense of the word but in the being rubbish at belonging to groups or clubs sense. I'm a wafter-around-the-edges type of person. So imagine my dismay when we suddenly and reluctantly became fully fledged life-time members of the "Autism Club". The point is that my little smorgasbord of Autism facts was just not enough - what did it actually mean?
A year and a half into this membership package you would expect that, if I'm ever asked to explain what Autism is, I'd have a snappy and concise response on the tip of my tongue that would give instant enlightenment. The Oxford Dictionary gives it a stab: "A mental condition characterized by great difficulty in communicating with others and in using abstract concepts". Quite frankly I think that this is a crap effort - it's over-generalised and incorrect for many. But that's exactly it - the Autistic Spectrum is so broad and each person on the spectrum is so different that it's impossible to put into a few words.
I'm most definitely not an Autism expert but I am an expert on my own child - for now, that is, as each time I get the measure of J, another bit of development comes in and I'm scaling yet another steep learning curve.
Therefore, in honour of a little chap who loves a list, and particularly a list with a clear beginning and end, here is my A to Z of J (for now!)
A Anxiety Anxiety and then some more Anxiety for the parents! Life just doesn't seem to make sense to J and this makes him really anxious. New people make him anxious. New situations make him anxious. Furniture being out of place makes him anxious. Strange noises make him anxious. I could go on and on. It hurts to see your child being so anxious.
B Brilliant Brain. J is on the high functioning end of the spectrum. He has an amazing memory for numbers and can do all of his times tables, forwards and backwards. But he can't use a spoon. He can remember the car registration number. I can't! He sees things in patterns. It's quite humbling at times.
C Communication. This is an area where he's making huge progress now. A year ago we lived in a world of frustration. Now he can get his needs met. There's no general chit chat with him but his brother certainly makes up for that!
D Danger Boy! J lives by the seat of his pants. Actually the seats of his pants don't last too long because he falls over so often. He really has no sense of danger - when you're inhabiting a world that doesn't really make sense, it's not instantly obvious that if you run into the path of a car you're probably going to get hurt.
E Eye Contact. I used to think that kids with Autism didn't give any eye contact. Some don't but if J wants something or is expecting you to say a particular thing, he can give eye contact akin to Superman's laser eye thingy. Good god that boy can give eye contact! I suppose it all comes down to appropriate eye contact..
F Friends. He doesn't have any and wouldn't know what to do with a friend if he had one. OOOOH that feels horrible to write down. Ouch Ouch Ouch. Kids of his age seem to have an "odd kid" antenna and act accordingly. He's rarely invited to parties and has never had a play date. He doesn't care. I do.
G Glasgow Kisses. For anyone who doesn't know what these are, please see the bridge of my nose. They are well aimed head-butts. Since the increase in communication and the subsequent decrease in frustration levels, they are becoming rarer. This is good. They make me potty-mouthed.
H Happy. When J is happy, he is delighted. There's no grey area. He's a lot happier these days and a joy to be around on the whole.
I Inflexible. If it's not on the visual schedule, it's not happening. J likes to know what's coming next and if something doesn't happen in the way it should he gets anxious and this can lead to an explosion of Vesuvian proportions. An unscheduled visitor will probably be told "Bye bye" and an attempt will be made at pushing them out of the door. Luckily he's cute enough for this to be funny.
J Jumping and running and hopping and rolling. J is always moving about. He is under- sensitive to movement and therefore needs to move a lot. Our neighbours hate us. Running is noisy in our house. Buying a trampoline is the best thing we've ever done (it does take up the entire garden, but, hey, it's a nice shady place for the dog to poo!)
K Kisses. J is a kissy boy. He loves a good smackeroo but hasn't yet worked out that you don't kiss the meter reading man when you say goodbye! He also loves the tightest of cuddles. Anything less than bone-crushing is not appreciated.
L Literal. Put it this way, don't ever say to a kid with autism "get a wriggle on" or, worse, "look at the dog sticking his lipstick out" !
M Music. J loves music. I like to think it's my heavenly crooning that has inspired this love. He has a large collection of CD's covering most of the genres. He likes a banging intro and a catchy chorus best of all. Did I mention that our neighbours hate us?!
N Numbers. Safe, predictable, organisable numbers. What could be better?
O Own Agenda. This is probably the backbone of J's autism. It is very strong. It is the reason why I'm turning into a silver fox. If J wants to spend an hour walking up and down someone's front steps it's very hard to bring this game to an end without tears.
P Personal Hygiene. As far as J is concerned, what is the point? Tooth brushing is for wusses. Dentists are there for biting. Hair dressers have already been mentioned in a previous article. As for nail cutting - forget it!
Q Queuing or any form of waiting, for that matter, doesn't come naturally. J would do well with a continental queuing system! He has a great way of getting out of boring queues that we have named "the skunk trick" - he just poos in his pants. Works wonders. I thoroughly recommend it next time you're at the Passport Office.
R Repetition. Known in the trade as "echolalia". This is the exact repetition of other people's sentences to entire episodes of Peppa Pig. I love J's echolalia - it's so great to hear him chattering. Although hearing "where the f**k are my keys" with my exact intonation in a quiet library isn't quite so desirable.
S Sensory Scrambling. A big issue. Have already mentioned that J is under-sensitive to movement. J's hearing and our dog's hearing are similar. It's taken ages to get J to turn around when you call his name, but rustle a crisp packet 2 miles away and he'll be there like a shot. Car alarms, radio interference and even water running through pipes in well- insulated walls can cause extreme primal fear reactions.
T Toilet Training. This is such a special subject for me that I am going to devote an entire article to it so watch this space. It's a dirty job, but someone has to do it....!
U Understanding. J needs a lot of this. The more time and understanding you put in, the more you get out. On a bad day, I think that people generally are not very understanding. Particularly when autism doesn't have any obvious physical features.
V Visual. Another whole article in the making.. J is a really visual person. If I tell him what is going to happen, it won't always make sense to him. If I draw a crappy stick-man-type visual schedule of exactly what is going to happen from the minute we leave home to the minute we get back, he is happy. He notices tiny details. He sees things differently and shows us the world in a whole new light - next time you go to the London Aquarium, try lying down on the floor next to the shark tank and looking up to the top of the water. Really - try it!
W Willy-obsessed!! They do say that Autism is extreme maleness after all. A true boy!
X xu - a monetary unit of Vietnam, equal to one-hundredth of a dong. Who knew!!! Ok, ok, I got stuck on X but an interesting fact I feel!
Y Yes. Not a favourite word. "No" is far more popular in J's book. In fact, I would say that it is the word he uses the most. Questions are far better if presented in a marketing style. e.g. Q "Do you need the toilet" A "NO!" or Q "Do you want to go to the toilet upstairs or the toilet downstairs" A "Downstairs" Result! One less pair of pants to wash!
Z Zest for Life. J can do enthusiasm with bells on. If it's something he enjoys like going swimming or riding the escalators in John Lewis for an hour's entertainment then J's your man!
So that's it for now. It's not succinct. It's not catchy. It's not even complete - J is so much more than the sum of these parts. It's an ever-changing list. I wonder what kind of a list it will be when he's a teenager......
