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Scared of going for a diagnosis

Alice

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

  • Hi Alice,

    I completely relate to this. I felt exactly the same before my assessment, and I think a lot of autistic people do.

    For me, it almost felt like imposter syndrome. All the voices of people who had doubted me over the years came flooding back, people saying I was overthinking, being dramatic, "too intelligent to be autistic," or that it was all in my head. It made me question whether I was somehow making it all up.

    But here's what I came to realise: autism is real, and it's incredibly diverse. There isn't one "correct" way to be autistic. Your presentation won't look exactly like someone else's, especially as a woman who's spent years masking. That's one of the reasons so many women are diagnosed later in life.

    I also worried about not remembering much of my childhood and not having people who could speak about what I was like growing up. I thought that would mean I couldn't be diagnosed. In reality, the clinicians are experienced in assessing adults, and they understand that not everyone has perfect childhood memories or family members who can contribute.

    I was recently diagnosed, and honestly it has brought me a huge sense of understanding. It didn't change who I was, it simply gave me an explanation for things I'd struggled with my whole life. Now, if someone comments on a behaviour, the way I communicate, or a body language difference, I don't feel ashamed anymore. I can simply say, "That's part of my autism," and if they're curious, I can help them understand. More often than not, people realise they were making assumptions.

    A diagnosis isn't about proving yourself or becoming "more autistic." It's about understanding yourself better and giving yourself permission to stop blaming yourself for things that have always been genuinely difficult. Whether you decide to pursue one now or later, your experiences are still valid.

    You're definitely not alone in feeling this way, and I hope being here helps you realise there are so many of us who have had the same fears before diagnosis. Wishing you all the best on your journey. Blue heart

Reply

  • Hi Alice,

    I completely relate to this. I felt exactly the same before my assessment, and I think a lot of autistic people do.

    For me, it almost felt like imposter syndrome. All the voices of people who had doubted me over the years came flooding back, people saying I was overthinking, being dramatic, "too intelligent to be autistic," or that it was all in my head. It made me question whether I was somehow making it all up.

    But here's what I came to realise: autism is real, and it's incredibly diverse. There isn't one "correct" way to be autistic. Your presentation won't look exactly like someone else's, especially as a woman who's spent years masking. That's one of the reasons so many women are diagnosed later in life.

    I also worried about not remembering much of my childhood and not having people who could speak about what I was like growing up. I thought that would mean I couldn't be diagnosed. In reality, the clinicians are experienced in assessing adults, and they understand that not everyone has perfect childhood memories or family members who can contribute.

    I was recently diagnosed, and honestly it has brought me a huge sense of understanding. It didn't change who I was, it simply gave me an explanation for things I'd struggled with my whole life. Now, if someone comments on a behaviour, the way I communicate, or a body language difference, I don't feel ashamed anymore. I can simply say, "That's part of my autism," and if they're curious, I can help them understand. More often than not, people realise they were making assumptions.

    A diagnosis isn't about proving yourself or becoming "more autistic." It's about understanding yourself better and giving yourself permission to stop blaming yourself for things that have always been genuinely difficult. Whether you decide to pursue one now or later, your experiences are still valid.

    You're definitely not alone in feeling this way, and I hope being here helps you realise there are so many of us who have had the same fears before diagnosis. Wishing you all the best on your journey. Blue heart

Children
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