Awareness day fatigue is a 21st century issue that has turned the the definition of supporting a cause into a quick click of a like button.
Have charities and organisations trying to bring about lasting change accepted this as a necessary compromise, or are we selling our causes short by just enabling people to feel like they're making the world a better place without ever having to roll up their sleeves?
My initial entry into the special needs jungle was with the birth of my third child, Dominic.
He was born at home (my choice) and I was so utterly smug that I had avoided having to go to hospital that the irony of the long months that I subsequently spent lying next to him in children's hospitals wasn't lost on me.
The reason that Dominic has the issues that he does is a mystery, as is what the future holds for him. You see, Dominic has an underlying genetic condition that is so rare medical science hasn't quite caught up with him yet.
I had a somewhat unexpected second entry into a completely different special needs jungle some years later when my oldest son, Elliot, was diagnosed with Asperger's syndrome at the age of ten. I don't think you could get two more polar opposite experiences of what it means to have a special needs child if you tried.
On the one hand the utter silence of having a child who, to all intents and purposes, has something we might as well call Dominic syndrome with a bundle of issues unique to him and no information and no one to talk to about what it all means anyway. On the other hand there is a diagnosis that puts you in the middle of a fast moving super highway of information where the noise can be so overwhelming you're not sure if you should be impressed, or scared, or a bit of both.
It was around this time last year, when I was helping to run the very first Undiagnosed Children's Day, that I first started to question the value of awareness days. I'd also just been told by the team seeing Elliot for his anger issues and tics, that they were pretty convinced that he didn't have Tourette's syndrome as the local team had thought, but did in fact have Aspergers. From that second all I seemed to see and hear where things about autism. Every media source imaginable seemed to be constantly chattering about it. The country seemed downright obsessed with it.
I will admit that I have always been very jealous of those with a diagnosis. I sat through an inspired talk from Sue Buckley (Chief Scientist, Down Syndrome Education International you can see a video of the talk here if you are interested) and sat fighting back tears that all these amazing strategies could help my child, but no one will ever think to try them, because he doesn't have a diagnosis, so he doesn't have anyone out there advising us how to make his life better. So the idea of perhaps having a child with a diagnosis was a novel one.
It was with enormous interest that I decided, from behind the safety of my computer, to tentatively dip my toe into the water and hitchhike for a bit around the posts written for Autism Awareness Day. The result, I'm guessing, was not their intended aim. It is not what I read exactly that caused me to completely clam up and never mention Elliot's (eventual diagnosis with) Asperger's on my blog, but rather the overall impression that the awareness day left me with. The support that I thought that the diagnosis would bring me seemed to come at a cost that I hadn't realised.
So intent were the blog posts on lashing out at a charity called Autism Speaks by proving that this charity had wrongly portrayed people with autism as being a nightmare to live with, that I ended up reading post after post imbued with a kind of gritted teeth determination to convince me that if I didn't think people with autism were the most fabulous people on the planet by the end of the post then I would be damned to burn in the fiery pits of hell.
But the 'awareness' that these posts were trying to raise didn't feel anything like the reality that was busy screaming the house down for the fourth day in a row. The awareness day, for all its good and noble intentions, left me feeling isolated and like I'd already failed before I'd really started. You see, it left me feeling like I couldn't say that I didn't love my son's autism, not even a little bit, even if it was part of him, because that part of him makes everyone miserable, including him, and I would take it away if I could. (I will be keeping my eye open for an angry mob with pitch forks now I have admitted that).
The whole experience left me wondering what the hidden cost might be of awareness days and whether or not they are now so common that we have lost their true value. This is not to say that I think that awareness days should be stopped all together; far from it, I think we just have to be slightly less fluffy about them and actually make sure that we're not just throwing ridiculous amounts of information at people on one day of the year and recording our success by the volume of subsequent Facebook likes.
I think we have a responsibility to at least try to aim a bit higher to make a lasting change, to strive to spark something in another person that will make them want to be actively involved in helping to work towards a solution.
Today is Undiagnosed Children's Day. Wanting to find a way to make my involvement feel less about mass tweeting people and more about trying to find the true significance of the day, I decided to make a video. I think that instinctively I'm a story teller, and the idea of making a film appealed to me, because it gave an opportunity to engage with people in slightly different way.
I will of course share the film with you, but I would also like to tell you a little bit about why, despite being chronically sleep deprived and never having enough time in the day this subject is important enough for me to be involved in, in the hope that it will bring a little understanding about why finding a way to make a lasting change is so important for undiagnosed children.
The realisation that things weren't quite right came about very slowly. Bit by bit the medical issues stacked up and Dominic didn't seem to progress as I was expecting. It was only with the arrival of the biggest, ugliest piece of equipment covered in a fabric that made me think that the person who designed it must have been going for the vomit splatter look, that it dawned on me it was the sort of thing that a disabled child would be put in.
Having never had the diagnosis talk with a doctor, it had never really occurred to me to think of Dominic as being disabled. The chair represented the fact that apparently the professionals involved with him obviously did. This has never bothered me, with the exception of the horrendous fabric choices, it just seemed part and parcel of who Dominic is.
He is also quite medically complex however and this has dictated our life far more than his disability. As a consequence, he (and I) have spent a large proportion of his life living in specialist children's hospitals, not knowing why he was so ill all the time, and learning to dread what each day might bring, wondering with increasing fear what the future held, or if there would be a future at all.
When I think back to those early days when he was still little and so utterly dependent, it isn't with the a fond nostalgia that most parents enjoy, it's with gut lurching queasiness as I remember the terror that sat on me like a constant weight making it impossible to breathe. I was terrified of the unknown, which is a cruel thing to be scared of as it gives your imagination free reign.
The thing I remember most though was the loneliness. If you're a parent, you're likely to have found yourself in a situation at some point where your child is unwell enough that your sympathy turns to concern. Then when you start to consider possible worst case scenarios, your concern is replaced by a rising, choking panic.
As you look at your child, it suddenly dawns on you how little control you really have over these small, fragile human beings and you want someone to tell you that it's going to be alright. This is what it is like to have an undiagnosed child, but this isn't a day or a week or a year of our lives as parents. It can seem endless as we wait it out, not knowing what is wrong or how to fix it.
For the first three years of Dominic's life that feeling of panic was always there, quietly buzzing in my subconscious. However much I smiled and got on with the day-to-day tasks of looking after three young children, it remained, ready to start clawing at me.
I used to spend hours reading medical journals well into the early hours of the morning, anything I could get my hands on, learning everything I could to try and piece the puzzle together. I felt a real need for urgency in finding a diagnosis; if we had the answer, we could stop fighting monsters in the dark where every decision was a 'best guess' and that there would be a better chance that he would survive.
It felt like I was fighting a battle with no weapons to keep my son alive as I trawled through blogs, desperate to find someone else out there, anyone who could give me answers, someone to say 'I know exactly what you mean...'. I never did though.
I would stay on the periphery of online special needs groups, never feeling like I really belonged, and like I belonged even less in the world of toddler groups and coffee mornings. Slowly I became more and more isolated, feeling like we were invisible, living inside a bubble with real life going on everywhere else. Even when I was filling in forms to try and get help I would stare at the little box asking for the child's diagnosis and feel like we didn't quite fit anywhere.
At some point, not with a big bang or any great revelation I just moved on. I quietly accepted that the answer wasn't out there to be found and, for my own sanity, I had to just let it go. I just got so used to the crazy world that your special needs child throws you into that it becomes normal in its own way.
And so this uncertain world became our normal. I have found peace with Dominic's lack of diagnosis, but a lot of that has come from the confidence that you gain from doing something for long enough. It also helped that the late night research I had spent so long doing meant that I had more confidence to start questioning, suggesting, influencing and advocating when needed.
I developed a kick-ass ability to speed-learn and as I began putting my capacity to research and find creative solutions to problems to good use, I started seeing doors open and possibilities present themselves.
Having no one to hold my hand, no one to turn to could have very easily broken me and it came perilously close on a few occasions, but instead it became the making of me. I think I am one of the lucky ones.
I wouldn't wish my experience on anyone and in 2011 I made a conscious decision to make sure that all the things I had learned weren't wasted. I started in a small way helping families with undiagnosed or complex children get funding for school or to win appeals over disabled adaptations for their houses, but it wasn't enough.
As I set about finding a way of bringing the families of undiagnosed children together to utilise the wealth of experience we had gained to help and support the most vulnerable families, I bumped into Lauren who had just started in post at SWAN UK (Syndromes Without a Name). SWAN UK now supports more than 800 families and last year we thought it was the right time to try running an awareness day.
For me, on a very personal level, Undiagnosed Children's Day is about trying to find families who think that they are completely alone. It's about trying to prevent anyone else having to follow the same path that I did, so each tweet, Facebook like or Google+ share is precious. It spreads the net that little bit wider and increases the chances of coming across more families.
But finding families isn't enough for me, it doesn't fix the problem, which is that undiagnosed children are invisible. They are not even in the 'uncategorised' category, so there is nothing to prevent them falling through the cracks. There is no funding, no care pathways, no school support, no charity support, no auditing to see if their needs are being met. None of the same safeguards exist for these children because they remain invisible.
It isn't even known how many undiagnosed children there truly are as there isn't even a way of identifying that they don't have a diagnosis, not even significant enough to get a tag on their medical file. They and their families are left in limbo, not counted until they're diagnosed. When you are reminded that these are amongst the most complex children that hospitals and other professionals are seeing, you can't help but wonder why no one is doing anything about it.
I have been questioning this for the last three years and have yet to receive a satisfactory answer. I have tried in countless ways to engage genetic departments, charities, the government and just when I think progress might be made, I have been let down. I wonder if I could shake off the parent-carer badge and make them pay for my advice they might attach rather more value to it.
So how can an awareness day lead to actual, tangible change? I see good people taking time to comment and share to help causes and then they forget about them just as quickly. The sheer volume of information that we are being asked to digest means that people's interaction with content that they see is rarely more than a flirtation.
How can we make it more meaningful and bring about a change that really counts in the long term? This kind of change isn't ever going to come about by simply making people aware of something in a safe, disengaged way. We need people to be moved enough to care and be motivated enough to become part of the solution.
Which bring us to the doubled-edged sword of social media... while arguably a campaign's best tool, it also allows people to feel like they've done their bit by liking what you have shared and then promptly moving onto reading what Gary Barlow has eaten for breakfast.
I'm not saying that we've got it right this year, all I can say is that we're trying to make sure that the decisions we make truly make a difference for families that really need us, and our stories stay with people long after they have walked away from their computer screens. So without further ado, here is the video for Undiagnosed Children's Day 2014.
Previously Renata has been at the forefront of successfully changing government policy so interventions are needs-led and no longer diagnosis-led, and creating the world’s first specialist nurse for undiagnosed children at Great Ormond Street Hospital.
She also helped establish and grow the first online support community for families of undiagnosed children and spearheaded the very first undiagnosed children’s awareness day, including producing information videos that were shown in parliament.
She is a regular speaker on TV and at events, is an RSA Fellow and the mother of three children with disabilities, two of whom have complex needs and one of whom also has complex medical needs.
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Huge thanks for this superlative effort from Renata and for this brilliant video which you’ll want to watch over and over. Renata, this post does so much to show the truth of the experience of not having a diagnosis to be guided by, thank you for writing it for us!
Pleasure Tania
Loved the film. Even read your blog which is a serious first for me, I don’t do blogs. Have never heard of SWAN or Undiagnosed day before and my daughter is 16. It has never bothered us to have a diagnosis we have always liked that she is known by her name not a diagnosis label. It has been easy for us as she is the youngest of three so firstly we had the other two to keep us grounded and her needs are obvious so support and the right schooling have always been there. Sorry easy is the wrong word, but I suppose that is how we cope! There were times I have felt like you, alone and on the outskirts. I am pleased you are at peace with the undiagnosis. I try to tell myself life is too short and our lives are limited enough as it is. I will not let it take any more of our time than it already does. Our life is restricted, but it does me no good dwelling on it or feeling jealous of everyone else and their normal life. There is always someone worse off. Thank you, I think what you are doing is brilliant. I now work trying to help families that have a child with SEND and realise there is a place for SWAN.
Well I feel enormously honoured then Deb. I think for me the biggest change has come since I made a decision that the only person that could change my situation was myself.. It has lead me on the most remarkable journey so far and I aam very excited to find our where it will go next. I think your attitude is fantastic and if you ever feel the need or desire to connect with the other SWAN families then you know where we are!
Well said renata! Almost 4 years without a diagnosis for us struggling to explain my son’s symptoms and what he needs. What I think he needs. Battling on. Then suddenly we have a diagnosis and we have new specific referrals, acknowledgement and approval for equipment because ” we know he will need it”. I’m not saying for a minute that things become easier especially with council budgets being as they are, but my arguments have a lot more weight behind them when I can print off documents highlighting parts of his syndrome and use this information.
This isn’t right or fare though.
Why does suddenly ” I’m not sure let’s just see what happens” turn into ” let’s try this to prevent this”.
Why does equipment get approved for the home just because I have a letter with the name of a syndrome on? Prior to this anyone could look at my son and know he wasn’t going to wake up one day and start tap dancing so why act as if he might just to avoid cost?
Awareness of undiagnosed conditions could one day lead to an end of “fobbing off” or of shirking responsibility just because there isn’t a label on a piece of paper. It could lead to better coordination of services and care especially for complex children. this is what makes THIS awareness day so important especially if we want to see real change
You’re right, it isn’t fair for families to have to wait for a diagnosis, early intervention is key in improving outcomes for children. Equally, getting a diagnosis is not necessarily the key to easy access to help either. Sometimes it can be ‘easier’ to have a severely disabled child than one whose condition fluctuates (especially when they are having a great day when ever anyone visits) and also many SWAN families who do get a diagnosis find that the condition is so rare that there is no real information out there to give to professionals yet. The key is professionals seeing their job as helping to remove the barriers that are preventing these children from fufiling their potential. This is a child centric approach that works regardless of diagnosis, or lack of it
I am not sure what to write. You are incredible, inspiring, amazing, strong, fantastic…so are all those children and their families. I am crying. I cannot imagine.
Great film. Just wanted to say I have no idea if my brother is classified as diagnosed or undiagnosed. He has a list of medical things that are “wrong” with him but why he has them I’ve no idea. He doesn’t fit into any particular category or syndrome. But that doesn’t matter. Maybe because he has a very obvious disability (he can’t walk or talk) we have been very lucky with help and support, also I think we happened to live in the right postcode which meant that he went to an absolutely fantastic school for children with all sorts of different and complex needs. My mum and I (and an old teacher of his) think that he may well be on the autistic spectrum somewhere (this is undiagnosed and we feel there ‘s no need for a diagnosis) as he does suffer from a lot of anxiety over certain things, usually things that he loves the most. But he is happy and seems to spread his happiness wherever he goes. He is my bestfriend in the whole world and is just Ewan and perfect the way he his. I do hope that you get all the support that need, (weather diagnosed or not!) and that your 3 children continue to be the happy children that come across in the video x
I want to say that children with medical problems / difficulties / disabliities for example that are like autism / ADHD all have an undiagnosable bit in them, which is real because no child fits into such a stereotype. Psychiatric diagnosis also underplays real physical / physiological problems such children have (few don’t); but what they do do among other things is support a pseudo-medical model for integration in schools, which doesn’t then work because it leaves a bit out, the bit which is about humanity, compassion and community.
I was moved to read your comments on what it was like to go through this experience, just like mine. ‘Awareness of undiagnosed conditions could one day lead to an end of “fobbing off” or of shirking responsibility just because there isn’t a label on a piece of paper.’ This equation of diagnosis only = help must be stopped.
‘Why does equipment get approved for the home just because I have a letter with the name of a syndrome on? Prior to this anyone could look at my son and know he wasn’t going to wake up one day and start tap dancing so why act as if he might just to avoid cost?’
Exactly RJ.