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At what point to seek a diagnosis?

java

Hi,

I read that if you're seeking a diagnosis your life needs to be negatively impacted to have an official diagnosis, how is that quantified? Is it accidentially offending people and being written off as weird or something more obvious such as very public meltdowns (where you scare normal people or they start pointing etc)? 

It is obvious that I have Aspergers particularly since I was diagnosed with coeliacs and are no longer glutenated, and have had problems since childhood (with examples in the diagnostic criteria). I don't think there's any doubt that I wouldn't 'achieve' a diagnosis but I don't know if it's impacting my life enough to warrant one in the eyes of the NHS. I am holding down a part time job (working with the public but in a very niche way which happens to be my interest, although there is major friction between myself and my manager which could be explained if just told her), I can generally do what I want but the things that make me happy are quiet and organised, I'm in a loving relationship, the problems come when I've done too much or I'm totally overloaded otherwise I can hide it well(ish).

I would like to go into a busyish place (cafes, events, days out) without bursting into tears/rocking etc because of a coffee machine screeching or someone bumping into me unexpecetdly. I can predict it sometimes so I generally run away and hide somewhere quiet but others one second I'm fine and then the next one not so good. It would be great to go do the weekly shopping trip without needing time to recover because the noise and the visual information is like being hit in the head with a hammer. 

What line do you have to cross for them to take notice?

I'm terrified about going to the doctor, I went through the mental health system for 3 years because they thought I had bi-polar tendancies which looking back now is laughable and that was utterly hourrendous. In fact, the only reason I wasn't discharged fairly quickly because I was overwhelmed in an early session, couldn't concentrate and ended up bouncing my leg unconciously...she pointed it out and told me it was weird and they kept me in the system for another 2.5 years which made everything so much worse.

I'm sorry for the long post. I think it may have come to a point where I need some help and I'm really scared.

  • Former Member
    Former Member

    Hi Java (and everyone else who has contributed to this)

    There have been a couple of other threads ongoing that have tackled this thorny issue.

    If you cannot carry out the "normal" activities of daily life then you should consider diagnosis with a view to some intervention that may help you cope with things better.

    Example,

    1. if you can't manage to go into a coffee shop because of the noise of the espresso machines then this is a real problem that needs addressing. I know exactly how this feels and was wondering if coffee machines were getting louder but no, I was getting more sensitive.

    2. If you can't manage to maintain good relations at work. Major friction between you and your manager is a real issue that, if not tackled, will lead to you walking out and looking for another job.

    Both of these are entirely big enough problems to warrant intervention by the NHS. The government does not want people to be falling out of employment and creating conflict and tension. Nobody wants people to be going round in a state of fear and anxiety about doing the normal activities like shopping and looking after themselves.

    If you go to your GP then you need to make a coherent and clear case with two very separate elements

    A) What problems you are having.

    B) Why you think that autism is the root cause.

    It is a good idea to write this down in a short list of bullet points that you can give to the doctor when you are trying to explain your problem. The doctor does not want to read an essay, limit yourself to one side of A4 as an absolute limit.

    The Catch-22 of autism is that we have problems communicating and are liable to fail to be coherent in the consulting room. We therefore struggle to communicate the problem to the GP.

    The coffee noise intolerance may indicate stress. I am aware that most of the time the noise doesn't bother me but I suspect that my sensitivity is worse if I am on edge or stressed about something. As a practical intervention you could consider using noise cancelling earphones (I use an in-ear style that just looks like normal ear buds)

    has everybody on this thread done the free online test at aspergerstest.net/.../ ? This is a reliable indicator and some GPs will take the hint when presented with the results of the test.

  • It is difficult to know when and how to seek diagnosis. I am not sure I would get a diagnosis myself as I function well from day to day. However, after suspecting that I might be on the spectrum for two years I kind of feel that it has become a problem not knowing for sure. It is hard to describe, but in esscence I have never felt that I fit in and that I am like other neurotypical people. Therefore the constant question is, why do I feel like that? Finally through discovering more about ASC I feel like I have found something that might potentially be a fit. Is it not natural to therefore want to seek a definite answer?

    I therefore think it is hard to get across that even though you may function well, it is still a problem for you inside perhaps? That is how I feel about it. I wonder how many people later on in life wonder if they are on the spectrum and never approach a diagnosis. I know that like the posts here, I too am terrified to go to the doctor which is kind of making me think about seeking a private diagnosis. I just want to know, I am not looking for any help or support just an answer.

    I am currently going round in circles about it and I agree it is scary. Good luck

  • Thank you both for your kind and encouraging replies. I think I just need to suck it up and dive back in. 

  • I feel for you. The thought of seeing another consultant who lacks understanding and empathy is scary! We need to find the strength to see this through and request the service of a specialist in this field! I intend on doing this for my brother and then for myself! As someone mentioned in a previous message, we need to be very honest and tell the consultant everything! If we don't then they don't get the picture! It is however a daunting thought! ask to see someone else, a second opinion, even make a complaint if you are not happy! Not that we want to have autism but when you know something is not right you want to know why and we deserve that! I will pick my time when I feel best to deal with it, and feel strong enough, like most things in my life that I have control over. Otherwise it can all get too much. Good luck and stay strong, and keep on!