I Support @Sonnolenta

The story so far: this open letter on a friend’s blog calmly and rationally asked a number of the chefs from TV’s Iron Chef and Chopped to consider alternatives to Autism Speaks (AS) when supporting autism charities and autistic people. It sets out the well-publicized issues with AS’s repeated negative portrayals of autism and autistic people as tragic, broken and a burden on the rest of society. Portrayals that strongly suggest the lives of autistic children are defined by suffering; that carry the unspoken presumption that it would have been better if autistic people like me and many of my friends had never been born.

Please take the time to read Cristiana’s letter. It was written in response to her autistic son’s reaction to discovering that chef Michael Symon was to donate $50,000 to AS. She pleads from the heart as well as the head for autism organizations such as ASAN and AWN to receive the recognition they deserve. Let me be clear: she is not demanding that anybody cease their support for AS just on her say-so. Rather, she sets out the evidence to support her case, and asks that the reader makes an informed decision based on that.I’m posting this to signal boost because she could use all the support she can get in this. If you agree, please add your voice to hers and show that we are not just a few isolated individuals but an active community.

Thank you.

Does Mental Illness Scare You?

The brain is a mysterious organ. Unlike the heart, lungs or kidneys, its workings are shrouded in a veil of complexity. For all that we know about the chemical and electrical activity it exhibits, for all our mathematical models of neurons and synapses we simply cannot fathom how its activity gives rise to self-awareness and consciousness.

Throughout history most people have viewed this consciousness as a uniquely human trait. Yes, we are learning that this is not the case and other animals also have consciousness, but the idea that the human mind is special persists.

Many people cherish the idea that we are set apart from the rest of life on earth, that we are more important as a result of the functioning of our brains. And perhaps this is one reason why mental illness carries such stigma.

When other organs malfunction modern medicine can often repair the damage, or even replace the damaged part (heart valve replacement, pacemakers, kidney dialysis, transplants). There is confidence in these treatments: we can understand a surgeon replacing a worn out valve in the same way that we understand an auto mechanic swapping out a fouled spark plug.

When it is the brain that suffers damage or illness things become much less certain. Because we do not understand its inner workings and how consciousness arises from them there is a deep fear that mental illness will corrupt who we are. That we would no longer be ourselves. We fear the unknown.

Most mental illnesses are also invisible. There are no outward physical signs that somebody has depression, schizophrenia or Bi-polar disorder. You never know. And that not knowing triggers fear, compounded by a general ignorance about mental illnesses.

The media doesn’t help (surprise, surprise!) by actively seeking to explain many violent acts as the result of mental illnesses, and often describing the antagonist in thrillers and horror movies as mentally ill. Schizophrenia in particular has a long history of being unfairly linked to violent behavior. I’m not saying that schizophrenics are never violent, but the reality is far, far removed from the picture painted in popular culture.

One statistic relating to mental illness and violence does stand out, however. A person who suffers from a mental illness is far more likely to harm or kill themselves. The misplaced fear of the mentally ill person needs to be replaced by a fear for them.

Because you can help by fighting the stigma, by being there when somebody you know is affected — because it’s more likely than not that somebody among your family and friends will suffer from a mental illness at some point.
Mentally ill people are often afraid to disclose their illness because of the stigma. It can be a sure-fire way to lose friends overnight. It might lose them their employment. How would that feel? Not only are you ill but now you’re on your own with no job. “Good luck with that!” Can you understand why that would push some people to kill themselves?So yes, disclosing mental illness can carry a sizable risk. But not disclosing means that there’s no chance to get the necessary support. It’s a catch-22 situation, and all because of the stigma. You wouldn’t shun somebody because they had asthma, would you? So why do it when an illness affects their brain?It’s not a difficult concept. Here’s a person who is ill. Support them. Simple.

Why Feel Ashamed?

Shame has been at the forefront of my thoughts recently. I wrote a couple of posts about things I had not been able to talk about before because of the shame I felt: self-harm and violence. And before that were other bloggers’ thoughts about shame: autisticook, Musings of an Aspie and feminist aspie. But what is shame all about? What makes something shameful?

Continue reading

Bah Humbug!, or What Christmas Means To Me

I dread this time of year – the Christmas holiday. An endless all-you-can-eat buffet of bright, shiny, colorful, twinkly, saccharine, plastic, superficial, empty-hearted, compulsory frivolity and joy to all. The cracks of the rest of the year are papered over, temporary patches to support the pretense that we are all getting along famously and having a good time. It’s all over the TV commercials – smiling families gather around the dinner table to share the feast, seasonal bonhomie ramped up to the max.

Amid the repeated-ad-nauseam Christmas songs, the wall-to-wall sparkling lights and baubles and the commercial brands lashed tightly to old traditional symbols I can’t help feeling that the whole experience is empty, devoid of meaning. Christmas has become its own parody, a cheap, mass-produced knock-off that has smothered the original beneath its glittering red and white, snow-carpeted facade.

Christmas died long ago: its dried husk is buried deep beneath strata of tinsel and fairy gold. With a wonky plastic angel stuck on top.

For me this time of year is not about giving or receiving gifts. It is not about parties and feasting. It is not about excessive consumption – gluttony if you will – of any kind. It is not about decorated trees, homes or streets. It is not even about the Christian religious festival.

For me it is the time of year when the darkness is closest at hand. When the long, cold nights harbor age-old fears of loneliness and hunger. When people used to gather round their fires to share warmth and protection, and to pray that the winter would end; that the sun would soon return to warm the land.

For me it is a time for thinking of the people I care about, those I love. This has become a season of unrealistic expectations, unattainable goals, impossible dreams. A season when so many people will fall short of the targets they set themselves, whether they didn’t manage to lose that weight to fit into the new party dress, or they saw Dad get drunk Christmas Day and fight with Mum, or they didn’t get that one special present they’d set their heart on. A season when people feel disappointed, hurt, alone.

I will not buy presents; I will not send cards. I will find my pleasure in what I can do for those I am close to. If I can make somebody smile, or help them feel that they are not alone, help them feel that they are appreciated and valued… then I believe that would be a worthwhile gift.

With a Little Help

If happiness in life depends
On finding comfort where you may,
Then most of all you need good friends
To brighten up your darkest day.

If loneliness should reappear
And threaten to extinguish hope,
Don’t ever give in to your fear:
Your friends can give you strength to cope.

The Third Degree

Believe me, being in a non-verbal state is as frustrating for me as it must be for anybody trying to communicate with me. It is usually a symptom of stress, of emotional overload, so the worst way to react is in any fashion that increases my stress – becoming emotional, speaking louder or more insistently, coming too close and encroaching on my personal space. If you must try to interact with me at least speak quietly, unemotionally and without approaching too closely or making sudden movements.

Any hint of threat, whether it is a raised voice or unexpected proximity, only makes me feel more anxious and ensures that the episode will last longer. If I do manage to force some words out then don’t assume I’ve come out of it – this can be a delicate moment as I start to regain some control and pushing me – giving me the third degree – will only send me deep back down into my uncommunicative state.

Above all, don’t take my lack of responsiveness as a sign of indifference, ignorance or antipathy towards you: it is not. It is simply that my faculties are fully occupied dealing with my own mental turmoil and there is no spare capacity to handle interacting with people. I don’t enjoy being non-verbal: because of the continual commotion inside my head it is mentally exhausting, and the muscular tension that results also causes physical tiredness. It is absolutely draining and leaves me in need of peace and quiet to relax. The fact that I might have been sat there, hardly moving or uttering a word, for hours does mean that I am ready to jump back into “normal” activities from the get go. Without some down time to recuperate it is very likely that even a small trigger will push me back over the edge.

Recognition of the causes and effects involved coupled with a little understanding makes it quicker and easier for me to work through the effects of the stress overload, and that has to be a good thing all round, doesn’t it?

The Support of Friendship

I fear that this Diamond Jubilee weekend just gone has left me sadly out of sorts with the upheaval and disruption to my regular routines. I accompanied a group of friends to London on Saturday, a lads’ day out. I will admit to having reservations in the run up to the day itself – I don’t generally enjoy the crowds and hectic work-day pace of the city – but I had not been there on a Saturday for many years and never in the company of a group of friends. As it turned out I ended up in a smaller group of three or four for most of the day and by focusing on just this group I was able to insulate myself sufficiently from the many thousands of people all around us – it felt to me as if we were in our own protective bubble.

The day passed so quickly and I had a wonderful time – my companions were good company and all the strangers around barely registered in my mind – I was relaxed and happy, and had one of the best days out ever. The next day, Sunday, was quiet and flat by comparison – I have no clear recollection of it – but Monday brought another social gathering. This time it was a barbecue hosted by another friend, and again I started out with some trepidation because of the number attending: over thirty people, but nearly all of them people I know well.

I needn’t have worried. They were welcoming and genuinely pleased that I had come along and my anxious insecurity was soon forgotten as I joined in the fun. I ended up not going home that night, spending the night at the home of yet another friend where I slept on the sofa – I can scarcely believe that people not only appear not to object to having me around, but even invite me over.

That long weekend is over. But despite my lingering tiredness I have memories of some very enjoyable times, thanks in such a large part to my friends. I cannot overstate the importance that such acceptance has to me – it gives me such a sense of support.