Bête Noire. Fear, Autism and Infantile Spasms

"The only thing we have to fear is fear itself - nameless, unreasoning, unjustified, terror which paralyzes needed efforts to convert retreat into advance." F D Roosevelt

I've written before about Anxiety and Control. J's autism is governed by excessive anxiety and hand-in-hand with that is an extreme need for control. It's a strong force, anxiety. It pumps through J's veins for the majority of the day and shapes his and, therefore our lives.

A benign walk in the park, birds a-tweeting, sun with its hat on, grasshoppers hopping (you get the picture) can be tranformed from paradise to hell in a split second. If there's one unseen rock on the path, you can guarantee that J's scooter wheels will find it - Crash, Bang, Aaaaagggghhhh! Thereafter follows up to 2 hours of extreme crying and massive distress from J that nothing and I mean, Nothing (god, have I tried everything!), can fix. It's heart-wrenching for anyone to witness. All he wants is for me to hug him as tightly as it is possible to hug a flailing, wailing 6 year old and to bury his head into Claude's ever-trusty neck. So, obviously falling off your scooter and bashing your knee is not ideal for any kid. But for J, his constant anxiety is tipped into loss of control and from there on we move up a notch into FEAR. Primal, base, innate, FEAR.

This constant anxiety is mainly connected with the possibility of things going wrong. Falls, batteries dying, camera memory cards getting full-up, things breaking, unexpected traffic jams, the Broadband connection faltering......and so the list goes on. This is all pretty realistic stuff. Shit happens in life. But J is so anxious about the possibility of fallibility that when the inevitable happens.... BOOM - we have a full fear reaction. Pale skin, uncontrollable shaking, dilated pupils, screaming and sometimes even fainting. J has no capacity for self-regulation in these situations. Complete meltdown followed by another dollop of anxiety in the pot for future reference.

Our bête noire is Fear. We live with the anxiety every day. We change batteries way before they run out. We check for traffic jams before travelling. I'm constantly on the lookout for obstacles on footpaths. I charge laptops and phones like a woman possessed. I phone swimming pools before setting off to check that they haven't been struck by a freak bolt of lightening, causing closure. I do all that I can to prevent the black, strangling fingers of Fear grabbing at my boy's brain. It's like swimming against the tide. It's so tiring.....

I've mentioned before that we've talked to J's neurologist at Great Ormond Street Hospital about medication for anxiety. It's an option but has zombifying side-effects in kids (although if anyone reading this has had any direct experience of these meds I'd be v interested to hear..). I'm not keen on the idea. But it's in the back of my mind. I've looked into Alternative Remedies but can't find anything there either for kids of J's age.

Lately I've been trying to find out whether this mountain of anxiety and fear is solely due to J's autism.

When J was born he was a yummy, pink, "normal" bouncy babe. He did all the usual baby stuff - burbling, smiling, growing etc and he hit every milestone bang on. It wasn't until we were on a camping hol (Camping? Camping? Abroad? With a toddler and a 6 month old baby? You see - we were pretty laid back then!!!) Sorry - yep, camping holiday, when J started crying excessively. Awake on the hour, every hour through the night (you must have hated us, camping neighbours!!). When we got back to the UK, J started having strange little episodes which looked like the tiny-baby startle reflex: stiff body, arms flung out repeatedly, followed by the most primal crying we'd ever heard. To cut a very long story short, we were lucky enough to see a GP who took us seriously (Infantile Spasms is frequently misdiagnosed as colic as the external symptoms look so mild, when actually, internally, the poor baby's brain is frying); we were referred to a paediatrician; J was subjected to a myriad of tests and we ended up with a diagnosis of Infantile Spasms. Google it. It's not a pretty form of epilepsy.

We were told he'd probably never walk or talk.

Many months, hundreds of seizures of varying types, several horse-strength drugs, 5 different hospitals, an ocean of tears and a shattering of everything we thought we knew about parenting later, J's seizures were controlled and we were sent out into the world with our 18 month old second-born. Put it this way, J was a very lucky boy to come out the other side with "just!!" Autism.

So, as painful as that lot is to write, even all these years later, I'm beginning to wonder whether this anxiety, this fear, is not just a result of J's autism but as a result of a huge amount of brain trauma at a very young age. The neurobiology of fear is not something I ever thought I'd be avidly reading about on a rainy Thursday morning (with a kitten on my shoulder, incidentally - new family member - aaaaaahhhhh!). I could draw you a picture of the amygdala and the frontal lobe and various other brain structures if you were interested. Will it help J? I don't know. I do know that nothing we've tried up til now has helped J's anxiety. There must be someone, somewhere who knows about this shit who can help to ease J's fears and loathings. I'm ok with his Autism. I'm not ok with his Fear. I smell a mission coming on......I'll let you know how I get on.

In the meantime, here's another bête noire - a cute one though, our new kitty, to remind me that life goes on....