We are tribal beings,
we seek a tribal identity one way or another.
Even if we are solitary,
do we still seek to know ourselves in another?
We have an urge to belong,
whether in a human tribe
not just for connection,
but paradoxically to stand apart,
to fence ourselves off and say,
“This is us”, safe against the big, unknowable world.
© Janey Colbourne 2016
A “label” is not a diagnosis. Not having a diagnosis does not protect a child from labels. They are already labelled, “Weirdo”, “Nobody likes you”, “Cry baby”. Denial does not make a thing go away. What about later in life? Does a diagnosis hold you back? That depends on how you use it. Knowing yourself leads to better choices in life, working with your strengths and accepting your own nature. We do not have to be limited by a diagnosis, in fact it can be liberating to be acknowledged. It is a starting point for meeting your needs. The diagnosis does not have to define your entire being, it is a “label” in the sense that it is a generalisation, but in reality individuals are infinitely varied. Diagnoses are convenient umbrella terms to help us categorise and describe particular issues that people have. How it affects someone depends on many factors. In this day and age a diagnosis should mean accommodations at work. Once we have a diagnosis we can choose whom we disclose that to, except in regards to certain legal or health and safety circumstances.
Lack of a diagnosis does not make feelings go away. It makes feelings confusing. Why do I feel different? What’s wrong with me? Why can’t I do it? I must be inadequate. In fact, undiagnosed developmental issues can lead to mental health problems, and even put life at risk, due to lack of support and a lifetime of misunderstanding: “Why can’t you be like your sister?”, “How many times have I told you?”, “What do you mean you didn’t hear me?”, “What’s the matter now?”, “Just eat it and stop fussing”, “Look at me when I’m talking to you!” Anyone with a neurodevelopmental disorder, such as ASD or ADHD, will know what I’m talking about and unless they’ve been extremely lucky, they will have heard or thought some of these things at some point in their lives, most especially so if they have been undiagnosed. Would you tell someone with depression not to seek diagnosis and help because of the stigma? Of course not. Although they might choose not to share with everyone they meet, it is their right to be fully informed and to make their life choices based on that. There is no refusal to assess for dyslexia, because assessment leads to correct support and enhances the child’s ability to fulfil their potential. It is accepted that this is not a character flaw or anything to be embarrassed about. The benefits of support outweigh any concerns about future stigma, because lack of support is a greater risk to lifetime success.
So, to those who express concern about “labels”, what do you really fear? I suggest you take a look at your own prejudice. To say a child should not have a diagnosis is to perpetuate ignorance and in fact to participate in maintaining stigma. To say it in front of that child is to imply that there is something to be ashamed of, and to imply that they should not be asking for help when they need it. Those who have ASD do not generally perceive themselves as having a disorder, they do not want to be “cured” of being themselves, only understood and supported in their areas of difficulty, whilst having their strengths celebrated. It is in fact neurodiverse adults speaking out and being unashamed that is leading to greater understanding of what is really going on for them. It is particularly important to raise awareness of invisible “disabilities”, so easily misunderstood and judged. Online communication has been a real liberation for many nonverbal autistics. I’m not suggesting we use children as flags of pride. In this age of the internet I think it is important to protect our children’s personal privacy and identity until they are of an age to decide for themselves. This is a whole different kettle of fish to seeking a diagnosis on their behalf. Their peers already know them and judge them. To return to the dyslexia analogy, children in classrooms everywhere are fully aware of who has dyslexia, they see the tools used to help manage it, it is part of life. These children now growing up will have greater understanding and awareness. This is where prejudice begins to be tackled. It is time to extend that awareness. We cannot dispel myths and ignorance by hiding. At one time a dyslexic or short-sighted child may have been treated as stupid, lazy or ignorant, until understanding of the issue led to the tools they needed. Self-management is not the whole story however, and the downside of seeing diversity as pathology is that the child is seen as having or being the problem, and therefore treatment should all be directed at them. At the moment the onus is on the ASD child and the ADHD child to learn to manage in an alien world, to hide themselves and suppress their urges. It is a good thing to learn to manage ourselves and our emotions and to consider others, but for these children there is so much pressure to fit in, it is akin to a left-hander being forced to write with their right hand. Fighting your own nature takes a lot of energy and effort, it is a daily performance. Many do have a certain amount of success at this, in which case they may remain undiagnosed, and their parents’ concerns dismissed, all the while feeling like a foreigner who doesn’t belong, an actor who has to keep pretending, wishing that someone would really understand them, and putting on a brave face until they get home and melt down. The relief when they discover there are others who feel like them is palpable.
If we do not shy away from diagnosis, as cultural understanding and awareness grows, and as we begin to see just how many people really have these natural variations in brain function, perhaps we might no longer perceive it as pathological. I am sure those who fear labels have the best of intentions. Indeed they are often people working in this field. Unless there is overt and severe difficulty in functioning, they may think the diagnosis would do more harm than good. Perhaps they too believe that these conditions are not a pathology, that these children have much to offer the world and that they should not be subjected to prejudice. But I don’t believe we can get to that point without working through it. Denial will never break through that ignorance. Diagnostic criteria and support methods cannot evolve if we don’t use those processes. It is all very well to say a child doesn’t need a label, they just need to accept themselves as they are and celebrate their differences. This is true, but the education system is not set up for these children. Noisy, crowded, overstimulating, modern life is accentuating difficulties for children with sensory issues, although they also benefit from technology in other respects, such as for communication. Perhaps in the past those sensory needs were less of an issue. Perhaps these children are the canaries in the mine. They have greater sensitivities to what is pathological in society, in education, in work and in social life. Their needs may reflect what we all need but are less consciously aware of: the need to move our bodies around; to express ourselves; to have quiet time; to be in nature and recharge our senses. As a society we really need this. There may be things they need to learn from us, but we have things to learn from them. As a species we are evolving to embrace diversity, as manifest in the fight for equality and against prejudice in its many forms. Perhaps this is an antidote in a time of increasing homogeneity of lifestyle and culture, along with loss of species and habitat across the globe. Rather than enforcing uniformity, it is time to celebrate difference. Until we do that we cannot find our commonality. It is time to celebrate neurodiversity.
© Janey Colbourne 2016
When I was young, I used to ask my granny what she wanted for Christmas, or her birthday, and she would always give the same reply, “your kind regards”, which I disregarded and bought her a present anyway. I didn’t get it then. Somehow she could never bring herself to spell it out to me emphatically that she really didn’t want a present, that just my company was enough. She tolerated my fumbling attempts to find a suitable and useful present for an old person who didn’t really need anything but people around her. The pantomime continued amongst herself and her cousins and friends, as each year they bought each other presents they didn’t really want or need. It came to a head the year she was given a gift that was the exact same present she had given a different friend a few years before and it turned out they had been passing it on unused and it had come full circle.
For me, at the close of 2015, a year of refugees being turned away, children drowning and floods at christmas where there used to be snow, this story represents what christmas has become; a pantomine, a farce, a dangerous game that epitomises the consumerism that is destroying the planet. The meaning has become distorted. It has been appropriated and manipulated by those who like to profit.
Now before you think me a Scrooge, let me elaborate. I’m not suggesting we give up on giving, on the contrary. I’m proposing we focus on a better way of giving and sharing, of entering into the “Christmas spirit”. The frenzy of buying manufactured goods, often made in poor working conditions, creating pollution and waste, and sometimes unwanted or unneeded, in many cases having worked overtime or taken out a loan to pay for it, is not the only way to show our loved ones we care. We can make a start by shopping local and/or fair trade, rather than profiting giant, unethical corporations. Let’s support small businesses and local makers, or where we can, make our own gifts. One of my favourite presents was an apple cake my brother made for me. Hand made gifts are personal and thoughtfully made with effort. It’s not about the money, it’s about the love and care. As I discussed above, a lot of older people don’t always want a present. Alternatives could include donating to their favourite charity, or taking them for a day out. That time not spent in overcrowded shopping malls could be spent sharing the gift of good company. For me Christmas is about brightening the dark days, spending time together, sharing good food, and appreciating what we have.
Let’s just slow down, take the pressure off, and enjoy our time together.
I didn’t get it then. I do now.
© Janey Colbourne 2016