Scared of going for a diagnosis

Hi All,

I'm new to community and looking for general support and advise...

I have been slowly coming to realisation that I'm likely Autistic and it has taken a lot of time piecing things together to come to this point.

The issue I'm now having is going for a diagnosis scares me silly. I worry about not being authentic and it all being in my head. Being a woman and learning to mask to survive to a level that I'm not even aware of scares me that I might not get the diagnosis. Having no-one from my childhood years that can provide information, very little of my own memory as a child and evidence as a child also means I worry I can't get diagnosis.  

These doubts stop my going ahead as it become too overwhelming for me, but I also need help to then start the unmasking process and get help getting to know people. I feel quite lonely at the moment and don't really have friends or family I can open up to.

Bit of a ramble above, but looking to see have others had this same experience of emotions and feeling of the process? Some confirmation from others of similar experiences to my own could really help alleviate the anxiety.

Also, any advise on your experience as a woman going through process would be gladly received.

Thank, Alice

Parents
  • I already posted a reply here, but have some more thoughts. 

    I researched today a phrase "where is the boundary between Broader Autism Phenotype and ASD. So first there was the information,  that in ASD the autistic traits cause an impairment in daily life. In BAP- not. But it's all not that 0-1, black and white, unfortunately. I like having everything clear and 0-1. But the whole spectrum is not that clear. It was even written, that the difference is often blurry. One person may be considered ASD (meeting the criteria) in certain environments (more demanding) and then if thus person gets support, they function better, then they may not be considered Autistic anymore. Which I find ridiculous,  because everything in life changes, but autism is (as professionals say) a life long condition. So for this reason I decided,  that even if I hear from my assessor, that I currently don't meet the criteria, I would still stay here, because I found my place here. For me a negative diagnosis would mean, that 1) the subjective opinion of this professional is that im not autistic enough; 2) there is probably no support for me out there anyway.

    If in any circumstances I lose my closest family members,  then I would need an external help. Then I would suddenly fit the criteria. But taking the uncertainty and long waiting times, it could be crucial for me to have the diagnosis as soon as possible,  but it could be impossible. 

    So all this is confusing for me, there are too many voices, opinions,  one assessor would give this dx, another one- not. The only thing I'm currently sure is that I have quite strong autistic traits, that are present since ever. I'm for sure BAP somewhere close to the ASD. Or ASD. I also found out, that many people considered "BAP" also struggle with anxiety and depression as a result of their autistic traits. 

  • I really enjoyed reading your thoughts on this, I think it's very relevant to what a lot of people worry about when going for a diagnosis and whether they'll 'count' or not!

  • I'm very much impaired internally, externally I function well in everyday life- I don't need assistance in household, basic tasks etc. I have no issue managing my money (currently,  in the past I had) but I struggle doing things that are outside of my daily routine. For example buying clothes for myself and my daughter. Someone has to remind me and help me organise time for that. Someone has to inform me, that I have a hole somewhere or that I need new shoes. Otherwise I live in my own world and it doesn't even come to my mind to think about it. This problem solves my mom, who gives me quite much clothes for me and my daughter. These are usually second hand, but good quality. She asked me few times if I'm not offended for getting second hand clothes. I'm absolutely not, I don't care if it's new or not. I aldo don't care what is the logo, label etc. I'm happy when it lasts more than few washings. My husband controls my pacing (repetitive behaviours,  that used to impact severely my daily functioning in the past) my grandma looked after me, made sure that I shower and used to explain to me that I have to shower and why. I was a teenager at that time. So I used to be quite strongly impaired in my past, with support from some of my family members (although they are also toxic) I appear to be just a bit quirky. I also figured out many things on my own - for example managing meltdowns. 

    Sometimes when I look back at myself in the past, I wonder how I managed it, to change so much and manage myself. I used to hear that im not suitable to function in this world. It hurt, it was true but I needed help with it. Nobody recognised that on time, they thought I was just stupid and problematic. My husband supports me a lot, although he does not really understand my struggles. He also does one more thing- talking to people,  on tge phone or live. For me it's terrible,  he does it very well with small talk etc. This way he gets things done.

Reply
  • I'm very much impaired internally, externally I function well in everyday life- I don't need assistance in household, basic tasks etc. I have no issue managing my money (currently,  in the past I had) but I struggle doing things that are outside of my daily routine. For example buying clothes for myself and my daughter. Someone has to remind me and help me organise time for that. Someone has to inform me, that I have a hole somewhere or that I need new shoes. Otherwise I live in my own world and it doesn't even come to my mind to think about it. This problem solves my mom, who gives me quite much clothes for me and my daughter. These are usually second hand, but good quality. She asked me few times if I'm not offended for getting second hand clothes. I'm absolutely not, I don't care if it's new or not. I aldo don't care what is the logo, label etc. I'm happy when it lasts more than few washings. My husband controls my pacing (repetitive behaviours,  that used to impact severely my daily functioning in the past) my grandma looked after me, made sure that I shower and used to explain to me that I have to shower and why. I was a teenager at that time. So I used to be quite strongly impaired in my past, with support from some of my family members (although they are also toxic) I appear to be just a bit quirky. I also figured out many things on my own - for example managing meltdowns. 

    Sometimes when I look back at myself in the past, I wonder how I managed it, to change so much and manage myself. I used to hear that im not suitable to function in this world. It hurt, it was true but I needed help with it. Nobody recognised that on time, they thought I was just stupid and problematic. My husband supports me a lot, although he does not really understand my struggles. He also does one more thing- talking to people,  on tge phone or live. For me it's terrible,  he does it very well with small talk etc. This way he gets things done.

Children
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