Everything starts with an E (for Elevator):Phobias, Obsessions and Communication (or Every Cloud Has a Silver Lining)

The dictionary definition of an Obsession is "something that preoccupies continually, sometimes to a troubling extent". The definition of a Phobia is "an extreme irrational fear of something".

I'm drawn to a dictionary definition - so tidy and indisputable - and these 2 particular definitions neatly sweep the entire contents of some of J's days into a nice sanitised sentence.

You see, these obsessions and phobias are both polar opposites and blood brothers in J's world. We deal with these guys on a daily basis in our household. I've mentioned in the past that J's middle name is "Anxiety" and the obsessions and the phobias order, make sense of and restrict his daily living severely enough for him to be labelled with a "disability".

J is diagnosed with "High Functioning Autism" - a label that I both cling on to like a rock in a storm in case it's ever taken away and am also slightly repulsed by (in a world where it's considered un-PC to call Thomas the Tank Engine's obviously porky, Fat Controller "Fat" anymore, how can anyone think it's a fair cop to call any child "Low Functioning"??). The "high functioning" bit for J refers to a bunch of amazing splinter skills which hint at an unusually high IQ and the fact that he can communicate with language when he chooses or is able to do so. J has a lot of words, knows every street in the area by name, lamp post numbers and bus stop letters, but often, when his senses have been overloaded by new experiences, too many people or too much noise around him, or when he's in his world and doesn't want to let anyone in, often he is totally unable and unwilling to answer the simplest of questions or communicate with anyone at all.

J's phobias are many and varied, strong, ever-changing and increasingly incapacitating. The common denominator is unpredictability and fallibility and they are normally based around levels of light or frequencies of sound. Water moving through pipes in his bedroom wall, sirens, noisy toys, phones ringing, radio interference, car brake lights and things breaking down or running out of batteries are our current demons. These are strong enough phobias for us to have talked to a neurologist at Great Ormond Street Hospital about anti-anxiety medication. Put it this way, J went through a phase of becoming so anxious when he was anywhere near an escalator that he would turn as white as a ghost, his body would go rigid, his knees would buckle and he'd pass out cold. And this was shortly after he was completely obsessed by escalators until one that he was on (what are the blinking chances????!) broke down and stopped while he was on it! His fear reaction, when activated, cannot be chivvied or distracted from and the neurologist suggested that there is a fine line between a phobia and extreme rigidity in thought patterns.... The upshot of our meeting was that we need to weigh up the fact that these meds have extreme zombifying side-effects with the quality of life that J has with living with these fears. The jury is out on a very long lunch on this one.

So back to these obsessions. They begin as delightful interests that seem to come from nowhere - where we find something that J is interested in and makes him happy, sparky and chatty. We have conversations with him about these new things and Dave and I delight in being able to connect with our little boy. And then we have the same conversations 100 times. And then 1000 times. And then the conversations become a necessary part of J's routine and then we have an Obsession. We've gone from a very early interest in numbers and letters, to number and letter games, to number and letter books, the numbering letter books to lettering number books, to numbering and titling every page of a Yellow Pages, to numbering and lettering map books to numbers of levels of buildings to turning every floor and room of our house into a lift with sellotaped (onto our freshly painted walls - ho hum!) numbers and letters, to reliving every numeracy and literacy lesson at his new school in exact detail when he gets home..... There's the odd rogue in there such as knowing every episode of Peppa Pig off by heart, but these deviations from the theme tend not to last for long. Numbers and letters are never unpredictable, totally infallible and J loves them. One thousand curses to the Superstore designer who left out aisles 10 and 11 in Sainsburys - this caused a whole lot of heartache when it was first discovered but we've got used to it now and knowingly gloss over their absence in our journeys up every single other aisle up to aisle 59 (buying a pint of milk can take time!!).

These obsessions of J's have ebbed, flowed and grown and in the last 6 months or so, we have reached the King of all Obsessions - we have found Lifts. Elevators. Pop "Elevators" into a search on YouTube and you enter a whole new world of alternative Train Spotters. J is not alone in his passion for lifts - there's a whole section of society (possibly all of whom have ASD), for whom lifts are the ultimate interest. They have variety - Schindlers, Kones, Otis's, Stannahs, Dovers, hydraulic lifts, traction lifts, floor types, ceiling types, different button styles... But they all go up. And they all go down. Genius! Apparently they are the safest form of transport invented by man - nobody has ever directly been killed by a lift. Forget Legoland, expensive toys or trips abroad, J's biggest treat is a trip to the carpark lifts at the Bentall Centre and each and every fellow passenger is informed (with suitable levels of eyecontact) of lift type, capacity and whether or not it is a "nice lift"!

These 2 factors: Fear and Obsession (and I'm certainly no ground-breaking expert here - it's purely the dark rings under my eyes talking) seem to dictate exactly how much or how willingly J communicates with the world around him. If neither of these taps is switched on in his brain then we have chatty, funny J. If Fear is switched on then we have no communication whatsoever. But we're beginning to see that if Obsession is switched on then we can use it to our benefit in connecting with a sparky, motivated J, but it's a fine line between using it to help and finding that we've dug ourselves in deeper.

So every night, before J goes to bed - strictly ordered bedtime, bathtime routine adhered to - Dave and I take it in turns to sit with J for anything up to a painstaking 45mins, drawing "Lift Books" with him. He tells us exactly - and I mean every pencil mark and dot - exactly what to draw. If any line doesn't meet or form the correct angle we are vociferously informed and the error is erased and line redone. We have made books and books of these drawings. And J has communicated every little bit of them. OK so Dave is an architect but I'm officially unable to draw in perspective so J really has to work hard with me! Not only that but he is learning that we are not psychic - he needs to use language clearly to get to a satisfactory result. And nothing gets drawn without him saying please or when he is raising his voice - see, there's even a lesson in there for tantrum control!!

And these are a few examples of what we've come up with:

Bossing your parents around may not be a socially acceptable form of learning the rules and boundaries of communication. It's lucky that we adore him. But by channelling his "Obsession" into something that teaches him and teaches us about him, everyone's a winner. He goes to bed, having flushed out all obsessive thoughts - he can switch off his brain and we can go downstairs and feel like we've been "with" him for those minutes. That, and we're immensely proud of him, of course!