Why worry?
Endless worrying is a major feature of Asperger’s Syndrome and huge amounts of anxiety surround everything from starting school to anticipating a party to meeting a new support worker and everything and anything in between and sudden changes in routine provoke high levels of anxiety.
I can’t emphasise enough the fact that all this worrying is done to an extreme of norm and if we could stop doing it we would because it heightens stress levels and blood pressure to the point where drug treatment is necessary at a relatively young age or the hypertension goes unnoticed until something like a stroke makes it apparent that it has been going on undetected for years.
High blood pressure
High blood pressure was first found when I was in my very early forties. A nurse commented on it when my obs (observations such as temperature and blood pressure and probably oxygen saturation and heart rate were measured). I explained it away by having to be in hospital, out of my environment with unfamiliar people and noises and no clue as to where anything was and simple things like plonking my lunch down without telling me it was there or what it was and then coming back and commenting that I hadn’t eaten it and asking why I didn’t want it didn’t help. The whole ward smelled of food so it was impossible for me to know without being told that it had arrived and all this contributed to high anxiety so that was how the blood pressure rise was explained. It carried on at high levels once I returned home though by then I began to worry over that, knowing what it leads to if untreated.
One day I heard banging in my ears, knew it wasn’t right so made an appointment with my then excellent GP and said:
“I’ve come for an MOT”.
He found blood pressure at 180/90 and exclaimed:
“Blimey”!
Then got down on the floor and felt the pulses in my ankles, took the pressure lots of times and eventually when dietary factors were excluded, put me on medication. I’ve been taking it ever since so more than a quarter of a century.
Changes in routine
When does all this worrying begin and why? I’m not sure why or from where in the brain the tendency to worry and become anxious stems. I just know that I’ve always done it and recall getting into a shocking state over being at school and worrying that I wouldn’t be able to look after myself and work, travel and live alone, marry and have children and so the list goes on. Even changes in routine if not prepared for and known about quickly enough or when sprung on me so suddenly as to offer no time for processing and preparation cause huge amounts of worry. Then there’s worrying over other people. If someone is ten minutes late and don’t tell me then have they had a car crash? Have they dropped dead of a heart attack (not helped by the fact that my husband did that in our flat early one Thursday morning, early in 1986)? Is their house on fire or the children hurt? Has their husband or partner had a crash or some other catastrophe?
In 1962, when I was nine, I think or maybe I’m a year out, my family talked of a possible Third World War, when Kennedy and Kruschev went very near the brink over missiles being placed in Cuba. It was known as the Cuban Missile Crisis and I had sleepless nights worrying in case a huge bomb blew us all out of existence. I must only have been about eight or nine.
Soon I am to have a new cleaning lady although Lisa isn’t leaving but just doing other things and already I’m beginning to think:
“Suppose she doesn’t text if she is late; is unpunctual; doesn’t do everything properly; doesn’t talk to me properly; I offend her by saying some tactless or too honest thing; just doesn’t like me”?
If only I could be laid back like my blind friend who just things, if a helper is late:
“Oh well, I’ll phone and see when they are coming and where they are”.
I can’t emphasise enough that all these feelings like worry over starting a new job or looking great on your wedding day, parents aging or children getting jobs and passing exams is common to all but it’s the extreme of norm, frequency of occurrence and extent of it all that is so, so different and marks autistic people out as being such. One poor little boy I heard of needed three weeks’ preparation for a visit to the barber or shoe shop. If his father had to take a detour on the way somewhere to or from somewhere else because of a road accident the poor little guy worried himself silly and he was also scared he would see lobsters in a fish shop that they may pass.
So just stop it!
Next question I get asked is:
“So why don’t you stop doing it if it causes you so much of a problem? You must know by now that nearly all the time that you have worried things have turned out fine”.
What I remember is when they haven’t, just as people read and recall bad news or the time they read the crime statistics and heighten and exaggerate the risk of being mugged or burgled, even murdered by a stranger and why won’t they let their children out to play on their own any longer? Partly because of the traffic flow but who doesn’t recall little Sarah Payne, April Jones or Madeline McCan who as yet has never been found?
It is as though “Aspies” are born with the worry volume set to high but then everything is felt to extreme, done to extreme, heightened to maximum so this means I’m not just a little bit happy but ecstatically so .
My educated guess is that all this can be put down to faults in the amygdala. We can’t trust ours as Professor Attwood told my friend, K. Incidentally, we can say all the right words to help one-another and tell each other about our worries so we can try to get reassurance and soothing words to calm the anxiety. We both know breathing strategies which help and can say mantras to ourselves or hear running water if that helps but it never, ever abates for long.
Worrying for others
There’s one bonus so I tell myself. If I’m going to do all this worrying, despite what the experts say, I don’t just do it on behalf of myself. I creep around the flat if I have to use the loo in the night so I don’t disturb my neighbours. I try to mop up spilled water so I don’t end up rotting the wood on the work surfaces in the kitchen. I wear headphones so as not to disturb neighbours during the day and make sure my bills are paid on time and would never dream of owing you even a penny as it is yours by right if I owe it so the worrying, like charity, may begin but doesn’t end at home. One thing we are not (we being K and myself) is a drama queen. Each of us can and does get plenty of attention because of being blind so don’t need to look for more. That in itself is unwelcome at times because we or at least I just want to blend into the background and if I want to be famous it certainly is not as a person with a white cane or dark glasses who is going to be singled out for that, compared favourably or unfavourably with other blind people so we don’t worry on purpose, would stop doing it if only we could, know it’s bad for our mental health which we are struggling to maintain and preserve and that, just like perseverating, we know it’s a colossal waste of time and energy which could and should be spent more constructively but one thing it does mean is being prepared for as well as fearful of the worst and then we can breathe a huge sigh of relief when the worst doesn’t happen.