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To diagnose or not to diagnose, that is the question!

maiz450

Hello all! 

I wondered if I could please get some advice on whether to pursue a diagnosis or not. 

ever since I was a kid I’ve been ‘different’ and ‘weird’ and ‘unusual’ and I’ve always struggled socially (i learned over time how to blend in and communicate well). For some years now I’ve been debating with myself whether I should pursue a diagnosis or not. I’ve spoken with my family and they all believe I show traits. However back when I was 17 (I was having issues with social anxiety and depression) I brought up the possibility of autism with my psychiatrist (CAHMS) and I was immediately dismissed, I wasn’t even allowed time to explain why I thought this or any traits I had. The lady said to me ‘it’s not possible it’s mainly in males’. Ever since then I’ve had a doubt in my mind wether I’m just an anxious and unusual person or if there indeed is some sort of neurodivergence within me.

I’ve been researching and found there are ways to privately get an assessment. I’m now debating if it’s worth me trying. My main concern is that I’m not neurodivergent and then that will lead me to asking so many questions to why I am the way I am. 

I wondered if anyone could share their diagnosis experiences or their stories to help me decide if this is something I should pursue. 

thank you so much! (Female, 25, north east England)

Parents

  • Hey good morning from America, maiz450!

    So my diagnosis journey was somewhat focused on proving to family members that I am, in fact, Autistic. I didn’t really have much else in terms of a goal with it. It worked, though.

    However, there are other reasons to pursue one:
    1. It is incredibly hard to get accommodations at work, but a formal diagnosis makes it a possibility.
    2. While there are no cures or medication for Autism, it can inform doctors of what treatments may or may not work. Ex. I used my diagnosis to explain to a sleep doctor why a CPAP machine was not going to work for me.
    3. You can possibly do this without a diagnosis, but it makes it a little easier to get a therapist with a background in Autism.
    4. It can help, but not cure, imposter syndrome. It’s less likely you will question whether you have it.
    5. It’s rare, but I have heard one person on this forum state that there are support groups that only let people with a formal diagnosis in. That’s a little wrong in my opinion, but it’s apparently a thing.

    On the other hand, there is at least one good reason why you shouldn’t:
    1. If you’re planning on emigrating, some countries do not allow people with an Autism diagnosis to immigrate into their nation.

  • in reply to profdanger

    Good evening from England! 

    thank you for your reply.

    not planning on emigrating ever so that should be safe! It’s more for my peace of mind and for my family to understand why I am the way I am. 

    did you worry about the results coming back as non autistic before diagnosis? 


    considering these points you have provided me (I love a list!) there appears to be a lot more positives than negatives, which leads me towards at least trying for a diagnosis.

    thank you so much for your reply and advice. 

  • in reply to maiz450
    maiz450 said:
    did you worry about the results coming back as non autistic before diagnosis? 

    Oh yes, I did worry about that! However, I’ve heard on this forum that chances are if you think you’re Autistic, then you’re likely to be diagnosed as such. I was even more worried when my daughter was being assessed because I (incorrectly) thought that if it came back negative then that means I’m just a bad parent.

    One thing I like to make clear though is that if you get a negative you’ve got two options: You can pursue a second opinion or you can self-identify. There are several regular members on this site that self-identify, or in other words they don’t have a formal diagnosis but they still identify as being Autistic. That’s totally fine. It might not get you some of the positives that I listed earlier, but a self-diagnosis at least gives you access to Autistic communities such as this one.

    So it’s not all doom and gloom if you get a negative.

  • in reply to profdanger

    Thank you so much.

    this has made me feel so much better about pursuing a diagnosis! I believe I can get a free screening consultation to see if it’s worth me pursuing a diagnosis which is also quite reassuring. 

    I suppose it’s not the end of the world if it was negative! 

    thanks again. This has helped so much 

Reply
  • in reply to profdanger

    Thank you so much.

    this has made me feel so much better about pursuing a diagnosis! I believe I can get a free screening consultation to see if it’s worth me pursuing a diagnosis which is also quite reassuring. 

    I suppose it’s not the end of the world if it was negative! 

    thanks again. This has helped so much 

Children
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