Advice on asking for diagnosis

[hello1]

Hi, I am new to this forum, and actually it is only recently that I have become to realise that I may have an ASD. Throughout my life I have struggled with feeling different to everyone else, and it is only through researching ASDs for my work that I have come to realise that I may have aspergers. I identified with many of the female tendencies and characteristics, and realised that the 'female' profile is a fairly accurate picture of my difficulties in life. I never put my shyness/anxieties down to being unable to understand social cues etc. but it would make a lot of sense. I also recognise my sensory difficulties with noise, fabrics etc.

 

However I am unsure as to whether I do have a 'full' ASD, and if I should get a diagnosis. On one hand it would be great to know for certain. On the other hand, I am worried that it may count against me if I need a medical check for any jobs (I work in education), and I have also read that some females don't get diagnosed correctly as the tests done are generally more tailored to the male 'profile' (which I don't fully fit). Does anyone have any advice on this?

 

Thank you

[Frances20]

Diagnosis is not an exact science. Even with the latest techniques diagnoses for mental health difficulties and specific needs can differ between Drs @52 and 63% of the time.

Ask yourself why you want to know and what you would get out of it. For children it helps to access additional support and help with related difficulties. This is can also be the case for adults who are having difficulties too. It sounds as if you are generally functioning well although with some shyness and anxiety. Both of these problems can be helped without a diagnosis of ASD.

I know that some people do find it easier to have a formal diagnosis, especially if they need support at work or are applying for benefits, but neither of these seem to apply to you.

The other thing to be aware of are the self-fulfilling prophecy which can exacerbate difficulties and, of course stigma. You touch on the latter when you mention concern about any impact on your employability. Of course stigma should never be a reason for not getting a diagnosis, but it doesn't sound to me as if you actually need one in the first place.

For example I knew for a long time that I met the criteria for Borderline Personality Disorder and my therapist at the time confirmed this. However I do not have a formal diagnosis from my psychiatrist who treats me for major depressive disorder and generalised anxiety disorder. I have not shared my knowledge about my BPD with anyone other than a close family member because I know that I am managing it (I'm very high functioning and have matured out of the worst aspects) and I also know that it is a diagnosis with a lot of stigma attached. I have read a lot about it, know when to get help for specific areas and make sure that I look after myself. I wonder whether a similar approach would be helpful for you?

[hello1]

Thanks for your reply. Some great advice there and thanks for sharing your experience. I think the main reason for me to seek a diagnosis would be to understand myself more fully- to find out if the reasons behind my difficulties really lies in this or not. You are right that I am very high functioning- I am able to function at work, with some difficulties (eg. understanding verbal instructions, attention, understanding non-verbal cues) that I work hard to overcome, and I have a small friendship group that I have had since childhood. I don't make new friendships easily though, and have been excluded many times (mainly at work), so as a result I am still very shy and anxious. I met meditation years ago, which has helped me a lot to calm down my negative feelings and to cope better.

 

My concern at the moment is really in relation to having children- if I am likely to need a lot of support due to my difficulties (ie. in terms of fitting in at mother and baby groups etc., and would I need other support) and also how best to cope with this if I do have children. It might sound a bit silly but this is worrying me a lot and as I have always wanted children this recent prospect of having an asd is making me seriously reconsider this. My partner has suffered from mental illness and I think also shows some asd traits, although we are very happy together and our shared difficulties help us to understand each other. However having children is a big change and I just about manage to balance my emotions most of the time, so I worry about how I would do so if I were to have a baby.

 

Anyway I feel that were I to have a diagnosis either way, it would help me to know how I would find being a mum in terms of meeting other mums etc. (my sister- who I would describe as very neurotypical- has met many other mums this way, and I think that meeting friends in her situation is an essential part of keeping her sane). Does anyone know of any forums that may offer advice on this? I will keep looking on the internet for info.

 

Thanks very much in advance.

[Frances20]

Hi, you are understandably anxious about a life changing decision to have a baby. Even people without any difficulties either mental health or developmental in origin worry about coping, so for someone so shy and anxious and with a partner with a history of mental health difficulties it must be even more daunting. Clearly the decision to seek a diagnosis is yours and you might find that it helps with a deciding whether to have children. However you don't need a formal diagnosis to join the ASD community or post here and get the kind of informal support that is available. The other alternative is to explore support for the main difficulty which you describe as being shy and finding it difficult to socialise. This isn't exclusive to ASD. There are lots of people with disabling social anxiety and shyness. It is also a diagnosis in its own right and there are even drugs to treat it. One forum which I found online is http://www.socialanxietysupport.com/forum/

Edited June 3, 2014 by Frances20

[hello1]

Hi, thanks for your advice. I have been thinking a lot about this, as I would really like to be able to fully understand what my situation is. I have taken many online tests to try to get an idea of whether or not I may have aspergers- scoring varies from 'may have an ASD' to definite, depending on the quiz. Does anyone know how I can get the best idea of this without going for a diagnosis? I have noticed that some websites vary in their definition of aspergers which confuses me further (there is also the male/female differences issue).

 

Frances20, thanks for the message and link. I actually have had some support for anxiety in the past, however I am now able to cope with it. I think that it would help me most at the moment to understand if my inability to fit in is caused by an ASD, or another condition, or just being a bit rubbish socially (but again, I would like to understand why I am always the outsider even when I am nice and try to show interest in others). I have never really fitted into many social situations, and people just seem to look at me a bit strangely, or to exclude me despite my efforts to 'fit in', or to ask me why I am a bit 'slow' or 'quiet'. Like many on ASD websites, I identified with the feeling of being inadequate in some way but never knowing how (thinking I must just be a bad person in some way that is obvious to others). I think that I have found ways to cope with some sensory issues- like by cutting labels out of clothing, not wearing certain fabrics that make me uncomfortable etc. I identify with so many issues discussed on ASD forums (eg. can't socialise in a group, make small talk, respond to emotional problems of others. etc). To know that I have an ASD would explain a lot. I have 2 sisters who are both what i would describe as very 'normal' and I have always felt like the strange, unpopular one. So I think from the point of view of my own self esteem/identity it would help me to know what exactly has been 'wrong' with me (in the eyes of society).

 

Anyway I realise that this is getting a bit long, it is just great to be able to discuss this with people who may understand some of my difficulties. I feel that once I know one way or the other, then I can find resources to work on certain social skills that I struggle with, and maybe disclose to close family and friends.

 

Thank you.