Saturday 13 April 2013

Undiagnosed Children's Awareness Day.

Today is Undiagnosed Children's Awareness Day. These children are sometimes referred to as SWANs - Syndrome Without A Name. There's a brilliant website which I'd love you all to take a look at -

Did you know that it is actually quite common to have an undiagnosed genetic condition? Had you ever even realised that there might be families out there struggling, because no-one has ever been able to give them a name for the condition/illness/characteristics their child has?

I have to admit, I had no idea. Just as I knew nothing about autism four years ago, as little as two years ago I had never given a thought to what other parents without a diagnosis might be going through.

Back when Sasha was first diagnosed at the age of 2 and a half, we didn't have to spend a long time in limbo, wondering what it was that made her speech not develop. It probably took just six months from us referring her for speech to receiving her diagnosis of autism, and in those months life just carried on as 'normal'. We weren't tearing our hair out, we were just learning how to build a happy family life at home. The diagnosis came as a surprise, but in a strange way also a relief, as it gave a reason for some of the difficulties I was facing which I hadn't had with our first-born girl.

In the year or so after diagnosis I'd heard from many other autism parents who were still struggling to get a diagnosis - they knew what their child was like, but the professionals were not keen on putting pen to paper and actually admitting it. I went back and thanked our paediatrician from the bottom of my heart for her quick and professional judgement. Conversely, during that time I also heard from parents who had seen professionals about their child, but who were not at all keen on the idea of giving their child a 'label' - after all, what would a 'label' do except single that child out as being different from all the others?

The 'label' helped me enormously. It helped me understand different parts of Sasha's character that I hadn't even really been seeing, it helped me know how to help Sasha and how to teach others to help her, and most importantly, in a very short space of time it helped me come to terms with how and who Sasha 'is'. It has also enabled me to tick boxes and fill in forms easily, because autism is of course a recognised condition. We all crave and expect answers constantly in our lives so we know what to do to keep moving forward - no-one likes to be blindfolded (literally and metaphorically) and told to get on with it, right?

Imagine then, if you could see there was something different about your child, if others could see that too, but nobody could actually tell you what 'that' was, or what they could do about it, because they just didn't know? Those professionals are meant to know everything, right?

Well, sadly they don't. Some families they just can't help in that way.

Through blogging I have met and made an inspirational new friend. She has three children, and her youngest boy is what she describes as 'medically complex'. She has to carry on with the 'not knowing' day after day. She is truly amazing and her writing is out of this world - I challenge you to go over and read her blog and not to leave with tears pricking your eyes. Not in pity, but in pure emotion at her honesty and her take on the world, after what she has had to experience, and what she has to go through every day. Try The-difference-between-you-and-me or Undiagnosed-childrens-awareness-day-2013 or The-unfixable. Or maybe all of them. 

And what do I want from this? I'd just like more people to think more about others and how they can help. Those 'others' may be in the street next to yours and you don't even realise it. It may not be physical help they need, it may just be emotional support. Or maybe, just a little more understanding from the world around them.


  1. It's important to remember all of those with no diagnosis I think as they are all too often overshadowed by everyone else.
    Scottish Mum

  2. I am mostly at peace now with my daughter having an undiagnosed disorder as well as her cerebral palsy, except in relation to her social life - it's very hard to find other teens who take an interest in her. Most of the medical stuff is behind her, but I remember it well and have huge sympathy for parents such as your friend who are going through it every day x

    1. It must have been, and must still be unbelievably difficult- in both physical and emotional ways. But she is obviously very joyful and a great joy to you!


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