I shouted at the man in the wheel chair today because he isn’t able to walk. I know it’s the wrong thing to do. Except he doesn’t have a wheelchair and the man can walk. But I was frustrated with him because he couldn’t help me with the children. And even though I know the reason why he can’t help me, I still got upset with him and shouted. And now he feels even more anxious and depressed.
That’s the issue with high functioning autism. Just because we can’t see the disability; doesn’t mean it’s not there or that it’s doesn’t exist. Or that the stuff most people take for granted in life, isn’t difficult for someone with HFA/Asperger syndrome, or in fact any other mental condition.
It’s particularly hard at this time of year, when there is a lot going on. A lot of changes to routines; changes in the home environment; a change in the way things are done, lots of people coming to visit, lots of noise and lots of activity and so on. Stuff most of us think is fun and exciting can often be the exact opposite for someone on the spectrum.
People who already struggle to function in our regular chaotic, neurotypical world, find it doubly so at Christmas time.
But it’s also particularly hard for the parents and the partners. Many who have become ‘carers’ over the years. Partners who are married to high functioning, well presented, intelligent, funny, interesting spouses, who simply cannot cope at Christmas – doctors, lawyers, designers, surgeons, politicians, bankers; brilliant minded people who struggle to function in an emotional domestic environment. People who don’t want to dress up, or go to parties, or wear silly hats or sit and have pointless conversations with people they hardly know. People who would be far happier being left alone to concentrate on their own specialist interest – Christmas day or not.
And there are millions of people out there right now, struggling day to day to care for their adult partners. But because their mental condition is hidden; because it’s on the ‘high functioning’ end of the spectrum, it’s hard to imagine what goes on behind closed doors, and their struggle it’s not acknowledged or understood by anyone.
We all watched the wonderful documentary ‘Asperger’s and Me’ with Chris Packham. We saw some of the difficulties and challenges he faces day to day.
Imagine someone with the same condition as Chris Packham, but not in an environment they can control. Someone with the same condition, living in a small terraced house, on a busy street, with a chaotic, noisy, bustling family life buzzing around them. Can you imagine what the person with Asperger Syndrome or High Functioning Autism will feel like? Someone with heightened sensory issues. Someone who gets very anxious, to the point of absolute fear when there is too much ‘noise’ going on. Someone who gets so anxious and stressed they just wanted to run and hide or explode. Except this person is a husband or wife and has children and all the demands and expectations of daily family life upon them. It’s a pressure cooker situation about to blow!
My husband, like Chris Packham, was diagnosed with Asperger Syndrome in his 40s. Like most people with Asperger’s, there’s a comorbidity diagnosis too. Which means they also have other conditions, including depression (which can fall into deep/severe depression without warning) he has high anxiety, stress and an obsessive compulsive personality. It’s hard for him, but is also very hard and very challenging for me and the children at times. Last night for example, Daddy told our eldest child that he gets very nervous and confused when he’s in a noisy room full of people. He becomes scared and he can’t cope and it causes his brain to become overloaded. So the only way to deal with it is to run and hide before he explodes, or simply shut everyone out and not speak. Can you imagine how a child must feel hearing this from his father? Or how terrible a father feels having to tell his child this?
Since his diagnosis, I’ve done my best to find out more about Asperger Syndrome. To learn various coping strategies, to limit the amount of ‘noise’ in the house, to do my best to remove stress from his life and to keep things and conversations as simple and as unemotional as I possibly can.
Usually I am ok. Usually I cope and carry on doing everything on my own. Looking after the children, doing all the day to day chores, doing all the banking, finances, shopping, cooking, cleaning up, everything to do with the car, the garden, the children and their schools – volunteering, making sure the uniforms are in order, school bags are packed, school pick up and drop off, bedtimes, early mornings, getting to work on time, holding down a job and never stopping or sitting down until 9.30pm, if I’m lucky. Spending most weekends as a single parent with a partner who cannot cope. Usually I am able to cope and carry on with a spring in my step and a smile on my face. Usually I am ok about this as I understand the difficulty of my partners Asperger Syndrome.
I try to concentrate on all the stuff he can do and not the stuff he can’t. But the stuff he can’t to do is mostly at home – the domestic stuff. Anything that involves being in a house with children running around and all the day to day noises in the average family household is a struggle for him. The ‘noise’ that someone with Asperger’s simply cannot bear to be around. Noise. Chaos. Craziness. Busy bustling family life. A nightmare for someone with his condition.
All that stuff drives him away. Makes him want to run and hide. To escape. To be alone with his own thoughts. His own rhythm. His own noises and his own uninterrupted linear thought process of how he would like his day to pan out. Not the one he gets dropped into – not the world I have created. Not one he can’t control or doesn’t get a say over. Not one that spirals out of control so much so, that it causes him to feel anxious, nervous, stressed and eventually depressed. He wants to be in his own world of calm. But he’s trapped and he’s here in this noisy house and he can’t escape.
Usually I am ok with this. And I’ve learnt to accept his condition and do my best to support it.
But occasionally, just occasionally. I am not ok with this and if I complain? Then BOOOOM!!!! Who dropped the atom bomb?! Who am I to complain or moan or ‘Make lots of noise repeating the same old thing over and over again!!’ Who am I to complain and who to?
This is why I am so grateful for support groups like Giraffe Workshops. I attended one of their workshop courses in the summer to find out more about my partner’s condition and what triggers his meltdowns and shutdowns that can last for days on end.
Through attending I have found out there is so much more to this complex condition. I’ve learnt to accept the diagnosis and find ways of living with it. Most importantly I’ve learnt to take care of myself more and get the much needed help and support, that is so lacking out there for the many many millions of partners, or ‘carers’ like me, going through the exact same thing, especially at Christmas.