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The Downside of Internet

chuckalicious

Bit of a ramble this one, but one I thought was relevant on this forum.

Like most of you on here, I have always felt different, odd, antisocial, confused and all the rest, and after reading about Aspergers and many of the stories from people on the spectrum, I'm quite confident that is where I am. I have my initial appointment next month so I will see where that takes me.

However, also like most of you, once I want to know about a subject, I keep on searching and reading everything out there. The danger with that, I have found, is that you will always find something which matches you. At that point, it is easy to say "hey, that must be what's wrong with me, I now have x, y and z plus 5 things ending in axia". 

I have found so many things which apparently explain the way I am, the way I act, the issues I have and the strengths I have. But, are they correct? Just because someone on the spectrum experiences something, does it mean it is related? Does it mean because some of us too may experience it that it is also relevant? At which point do we stop trying to all match up? It just seems too easy. Especially for those who are not officially diagnosed. I understand why many don't want to be officially diagnosed or why they haven't been able to get a diagnosis, but it all seems very dangerous for someone to decide they have a disorder, or whatever you want to call it. I think it's actually one of the things which has turned many people against the whole thing - even my GP told me it was a bit trendy to try and be aspergic. Some of you may find that offensive but I know exactly what he means. 

If you look on a forum like Netmums, there are a frightening number of parents saying their 2 or 3 year olds have Aspergers. They almost seem to use it as a badge of honour and a route to get more help at school. Can you truly tell if a 2 or 3 year old has something like Aspergers? My 3 year old daughter was a bit of a worry and showed so many traits of AS, but out of nowhere she has come out of her shell and now shows none of those issues - we changed nothing, just let her be herself. Kids are so unique at that age and all have their strengths and weaknesses that it seems crazy to label them so early.

This forum is no different to any other I guess - I am a member of a car forum and if you read enough of other people's problems you're bound to find one you can link to your car too. The question is is the issue really there, or is it just the way your car is?

Anyway, that's enough I think. I hope I haven't offended anyone, I just thought it was worth a discussion.

  • There are a lot of people on netmums that will say im worried,do you think? is it a possibility? however there are also a lot of people whos children have issues,it is good to read up and see if you can identify with things.  I really disagree with the statement a badge of honour,really? i am sorry but people want whats best for theyre children.

    Why shouldnt theyre children get more help at school if they have sen? i dont understand that part either? there is not enough help out there as it is.

    For me information at the moment is knowledge,for instance i posted about my child and the toilet on here,longman described it could be something totally different and i have been blaming myself.

  • I struggle with doubts because, what I experience is "normal" for me and I cannot imagine what it would be like to be different, and think differently. This means, I don't currently have the confidence to push for a diagnosis. I live in the wrong post code area for this sort of thing. A piece of paper would dispell my doubts, but lack of diagnosis spurs me on to read and study, to improve my situation. I must say that it is working.

    I have tried in the past asking people "do you think this sort of thing?" It is normally met with silence. I rarely do it now.

    The bottom line is -If I was completely wrong and have assumed asd when it is something else, it doesn't matter, if the advice I am getting here is improving my mental health and attitude to life and giving me strategies for dealing with my problems.

    Win-win situation Smile, and maybe my experiences will help others.

  • lots of excellent replies here. Thanks :-)

    when I commented on self diagnosis, for me it meant that what if I self diagnose and I'm wrong? Enough has happened to me to make me doubt myself even though I'm sure. It would be easy for me to say yes, I am on the spectrum, but what if I'm not. I want someone to tell me. I need someone to tell me actually.

    with respect to notifying the DVLA or insurance, I wasn't aware of that. Certainly a downside!

  • I am here not looking for labels, but to talk about issues I have, with people who understand and reply. Before I came here, I tried many other places and got little response. People here have helped me work through issues not dealt with for years. 

    I don't care whether I get a label in the end, I have little confidence in doctors. The people I talk with here, speak a language I understand and don't ignor me.

  • Hello all i am tested and have autism aspergers ask me what its like i will Moore that happy to tell you

  • thanks for both the replies. I agree with you both - it all serves a lot of good. But caution is needed, certainly in my case at least.

  • I can see both sides of this debate. What really matters, of course, is that people with problems get the right support and understanding, and having an official diagnosis is a gateway to important services.

    In order to ask for an assessment you need to have some idea as to what condition you might have, so that this can be ruled in or out. This is not quite the same as self-diagnosis because the latter has an air of certainty about it, when there can be no certainty until a professional trained in assessing autism has made their judgement. All an undiagnosed person can say is that they have strong suspicions that they might be on the spectrum, and it is 'jumping the gun' a bit to say ''I am an undiagnosed aspie'' because what if you are mistaken? It is a circular argument because it does not rely on empirical evidence based diagnostics, and therefore cannot be argued for or against. A person who might have Asperger's and is currently undiagnosed should receive support while they are waiting for diagnosis, and that support should be person centred and should take into account their individual needs. There is, of course, a problem with lack of diagnostic clinics in parts of the country, and this needs to be remedied.

    Usually a person seeks diagnosis because their traits are causing difficulties in their life and they need access to support. A trained clinician will know what to look out for and what to exclude. Asperger's is probably one of the most 'over diagnosed' conditions, but I think this mainly applies to self-diagnosis (note - not the same thing as someone who strongly believes they might have Asperger's but is open to the possibilty they might be wrong, and is seeking a professional opinion). It is not unheard of for someone to 'diagnosis' their mum, dad, grandparents, and colleague at work with Asperger's, and this has even been given a name - 'diagnostic bleed'. This is a product of greater awareness and is to be expected - it is not altogether a negative thing, but no one can be certain that they have Asperger's until they have seen a qualified clinician.

  • I see where you are coming from but let's use one of my examples:

    I'm narcisstic but not narcisstic enough to have the associated "personality disorder". Nevertheless, I can be bad enough to annoy people, so I usually think about what I say.

    The way I see it, many of us here don't have an official diagnosis, yet we know that we have at least some "axic" or "istic" traits. These need to be dealt with as best we can. In my case, greater awareness has helped me how my brain works and how neurotypical people probably just don't get it. Yet on the other hand, I worry because it means I lack the sort of skills that most neurotypical people just take for granted. Especially as I'm now quite old, I worry that I cannot even teach myself those skills.

    So, in my mind, it doesn't really matter whether one is "official" or not. What matters is that we have issues that we need to live with and, if possible, get help with.