Undiagnosed children grow up to be undiagnosed adults

And sometimes they live happily ever after. They really do. Because undiagnosed may not mean complex medical problems or disabilities. Sometimes all an undiagnosed child needs is love and a little extra support and they will grow up to lead independent fulfilling lives. For others the future is more uncertain. Tragically some children have such severe difficulties that they never make it to adulthood, and on undiagnosed children's day, we should also remember those families and their enduring grief.


In between there are the children like my daughter who overcome the worst of their medical problems and make it to 18, but with their differences intact. What now?





Smiley has been at the best school in the world for more than ten years: she has been given as much time, care, attention, effort, expertise and genuine affection as she needed to give her the best chance to fulfil her potential.



And she has done that. In spades. Despite her severe physical and intellectual difficulties. But in the eyes of the system she is a burden, a drain on tax payers.

I don't see it like that. My daughter spreads joy wherever she goes, and she supports the economy by creating jobs: for carers, for speech therapists, nurses, doctors, psychologists, teachers, administrators, occupational therapists, equipment manufacturers. A whole army of people are employed and contributing to the economy because of her.

Yet no-one sees that. In Ireland there is no statutory obligation on the State to support an adult with additional needs, so families are back to fighting once again to get the services that are essential for their children. But now parents are older and tired. Years of caring often has serious health consequences, made worse by lack of interest from society, and a patronising attitude from many of those who should be helping.

Being an undiagnosed adult means that my daughter is stared at wherever she goes. Young children wonder why she is in a buggy or wheelchair. Adults turn when she shrieks and smiles with delight . Often they smile back, and those are the good times.

Being an undiagnosed adult means that families have few places to go to for support. There is nothing in Ireland. There is the wonderful SWAN UK, but it mostly focuses on children.



Being an undiagnosed adult in a wheelchair means that activities and trips out are difficult. Many buildings are inaccessible, including our dentist, orthodontist, and part of the GP surgery, not to mention many cafes, shops, beaches and country walks. My daughter loves swimming, but it is so difficult and tiring for me that we rarely go. If she needs the toilet, we find that many disabled toilets are too small, too dirty, locked, or used as storage. And even if we can get in, almost none in Ireland have Changing Places with the proper hoists and trolleys that many adults need to be able to use them.

Being an undiagnosed adult means that your parents will be thinking about the future and what will happen after they die, and hoping that they won't, as the options are all pretty depressing.

Being an undiagnosed adult means that you deserve as rewarding and fulfilling a life as everyone else. And I will be fighting for exactly that for my wonderful daughter.




Written for Undiagnosed Children's Day, on Friday 24th April.


23 comments:

  1. This article was an education to me... when you say undiagnosed, does that mean the professionals can't find what exactly is wrong with your daughter (who is beautiful by the way)? I spent a week in Temple St beside a 12 year old who had a myriad of problems but nobody could figure out what was wrong.. he poor mother. I was lucky, my son had metopic synostonosis (i think i spelt it right) and he had an operation to fix it. I have 3 boys and a tonne of diagnoses going on but perhaps it would be worse to be without one? <3

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    1. Hi Aisling, thanks so much for your interest: my daughter indeed is undiagnosed. For the purpose of obtaining services she is labelled as having cerebral palsy, but she has a lot of unusual features that don't fit with that. The main issues about being undiagnosed is that you don't know anything about what is affecting your daughter and there is no charity or support group that can help you x

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  2. Yes, Yes, a THOUSAND YESES. That is why it was so important to me (and others like you) to find an answer. But even having an answer doesn't tell us more than a name. Orphan/rare syndromes can be so frustrating yet so endearing. It is beyond scary knowing in just 10 or so years my child will be an adult and then services stop. It's like oh we've made great strides so best of luck and so long don't write us. UGH so frustrating. Keep fighting the good fight my warrior friend!

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    1. Thank you Kerri! And so thrilled that your blog is getting the recognition it deserves: that is something positive that we can do to make a difference for our kids x

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  3. A hugely important post. Yes, I often look ahead of us with trepdation. Adult services are dire compared to children's, and then there is always the worry about what happens to them if something happens to me. Thank you for adding this (very important) perspective x

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  4. This must be so frustrating for you all. I work with adults with learning disabilities and there seems to be much more available then what you have said where we live, we are always going to college and various days out and social classes they attend , there is quiet a lot available and it is a shame it is not the same as where you live. Some of the ones i work with are undiagnosed too xx

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    1. Sadly it does seem that adult services for those with additional needs are not as good or well developed in Ireland as elsewhere, thanks for your interest xx

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  5. All the best to you and your beautiful child. I can understand your point of view and I can certainly feel the positive emotion behind it. However, it certainly bends logic in ways that are truly painful to see. For one thing, according to your perspective, all those people who provide services for your daughter are then simply supported by the state (since they are to be paid by the state): what kind of contribution to the economy is that? It's as if you'd be contributing to an increase in your own income if you decided to move money from one bank account to another (both yours), as look, money are coming in and who cares that it's not at all coming in, but rather just moved about. Your daughter may be contributing to the society, sure, but if that is true, then those directly receiving her contribution should pay for it (as it's always the case with other people's contributions), not the state (hence, everyone, without having a say in it). I am all for charity and support, but I think that they should ALWAYS be personal, never state-mandated. Nevertheless, I know that logic is unlikely to rhyme well with emotions and such cases are, of course, emotional.

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    1. Thank you for your comment. I am actually not necessarily in favour of charities, many of which become like any other big organisation once they grow beyond a certain size. I'm not quite sure what you're trying to say, but daughter will never fit into the capitalist model, along with many other disabled, vulnerable and elderly people. And that is one of the problems that I have with capitalism.

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    2. If you mean that I should be paying privately for an adult day service, let me tell you that I doubt that there are any jobs that would both pay enough and also provide enough time off so that I can bring my daughter to all her appointments and cover sickness and hospital stays etc.

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    3. Perhaps an example will make it easier to convey my point. In my grand-grandparents' mountain village (in another part of the world), there was an old woman who had a monthly state pension the equivalent of 2 loaves of bread. She was clearly past working age and she needed a walking stick to move slowly around, so I gather that you'd say she would "never fit the capitalist model" (perhaps under the "elderly" label as you put it). Still, she actually walked around the village all smiles and talking to people and most welcomed her and gave her in return what they could. She never asked for anything, she never expected anything. She was a visitor and a neighbour, nothing more and nothing less. Whenever we went there (occasionally and on short holidays) we also always visited her or met her in the street, talked to her and gave her what we knew she needed or would have a hard time to get/buy. She was not related to us in any way and for me it was simply the thing to do, I'm not even sure I ever considered it as charity (and I always meant the feeling and the act of giving rather than the organisations as you seem to have interpreted it) - more as the natural outcome of a personal connection to this woman, who happened to need what we could give and never for a minute would have thought that she "had the right" to anything or that others (the state) should pay for her needs, whatever they might be. I'd say she actually contributed to the village community, through her active presence, through her kind words, through her pleasant way of being and getting involved with others. In turn, the village people (hence, those who received this contribution, but not the state as a whole, not even the next village or even someone who just did not really talk to her otherwise) basically paid her. This is what I meant earlier: not as much that you should pay for your daughter's services, but that the only real solution to this is that she finds her own place (in the sense of community or anything else) where her contribution (whatever that might be) is recognized as such and basically rewarded. I honestly can't get my head around this other approach of "rights" of all kinds, as at a closer inspection they all seem to boil down to "those less able have rights and those more able have obligations" which to me is just a sure way of actually creating both resentment and a fight which truly does not help anyone. There is no real argument (not matter how painful that might be) in "your contribution is paid a lot, therefore you HAVE TO give to me/her too", nor in "she needs it, therefore she HAS THE RIGHT to get it." The only argument is "her contribution is not recognized in this community, therefore it's either the need to find/create a community that is a better fit or to adapt her contribution to better match some real need". And conversely, I'd be quite curious whether you'd find it true that someone (and by extension everyone) had the right to be paid by you for their contribution to your household, consisting for instance in painting a pretty small flower on your door, whether you asked for such flower or not, whether you like flowers or not, whether you want them painted on your door or not. Once again, I feel your pain and your difficult position and I wholeheartedly agree that it is hard and heartbreaking and very, very difficult. But unfortunately there are no magic wands to simply take the pain away.

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    4. Thank you for clarifying: I think I understand your view now, though I don't really agree with it. On the other hand, I'm sure that many people will agree with you.

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  6. How can we call ourselves a civilised society if we don't look after our most vulnerable?

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  7. It's a scary situation.
    I'm wondering whether, since your daughter's undiagnosed situation does have a connection with cerebral palsy, whether you would be able to let it come under the cerebral palsy umbrella. If that meant she (and you) could then access the help/support you both need maybe it wouldn't matter if it isn't strictly accurate?

    Re. the economy. I think your approach applies to lots of things. Free passes for senior citizens help keep bus routes running for the use of people going to work so they can contribute to the economy - ditto shoppers who themselves keep the economy moving by catching the bus to buy things in shops thus providing work for shop assistants. Bus drivers stay in employment, pay their taxes and don't claim unemployment benefits. This is how our economy works - by keeping money moving; and this happens in all sorts of ways. So I agree that one of the ways people with disabilities contribute to society is by helping to keep that money flowing from one place to another. (As well as by smiling!)

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    1. Luckily Smiley has a service provider, the problem is that there is no premises to provide a service for this year's school leavers.

      And huge thanks for your support on my economic theories x

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  8. I didn't know there was an undiagnosed children's day. I'm glad you used the opportunity to raise awareness about the lack of facilities when they become undiagnosed adults though. xx

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    1. I thought it would be good to look for a different angle xx

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  9. It must be a huge worry for you thinking about the future. My nephew is non-verbal autistic and the most amazing child but I know that his parents' biggest worry is the future for him and what will happen if. I know that you can't think like that and you should live for the moment but when you have a child with any condition like this you do have to. You are such an inspiration and this is such an important issue.

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    1. Thank you. There are no easy answers, especially when you leave the safe cocoon of the school system x

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  10. I understand your frustration...I do. I carry the same sort of fears..I have had people tell me "Why should my taxes go towards special education" and then services get cut...and then many adults that did not get all the help that they needed as children..wind up unemployable..and the tax payers yell "why should my money go towards supporting "these" people...it is a horrendous catch-22. In the end, what it boils down to is how disability and disabled people are viewed...in many cases-as "less then" therefore holding no value. It sickens me.it saddens me..but mostly scares the hell out of me. .Yes, carers do indeed contribute to the economy..they receive a pay check and use it to purchase things, pay taxes,,,etc. You raised some excellent points with your post-thank you for writing it...sorry if I got on a long winded pedestal...This is something we are dealing with right now as well....

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    1. Your clear-sighted comments are always welcome Kathleen xx

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