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Terrified to get diagnosed

NAS38144

Hi, so I'm pretty sure that I am autistic. I have become super obsessed with researching into it over the past year and I identify so strongly with the symptoms and issues experienced by autistic people that it kills me to not know for sure. it would explain my whole life and why people are so quick to tell me I'm weird or rude. I have found that the autistic community just means a lot to me now, almost like finding a family. But, now there is the issue of getting a formal diagnosis.

I am an 18 year old girl, living with my parents, going to university to study animation in September. My parents are unfortunately very ableist without realising it, my dad is a mental health care worker but he himself views mental health issues as bad and believes that diagnosis' are essentially pointless (for example he once claimed that PTSD is not real) but he is very private about these ignorant views. Due to my home environment I simply can't discuss anything about autism with my family. I know the process is to go to the GP then get referred but I'm so terrified of phone calls and speaking to strangers that it makes me feel physically nauseous. When I'm alone, I can ramble about autism for hours, but having to articulate my thoughts to a doctor will be so difficult. My biggest fear is that i will be told that I am not autistic. I'm also worried that i will get misdiagnosed because women of colour have higher chances of their autism being overlooked. And I don't want to be alone when I get assessed because it seems so scary to know that people are judging your every mood, but there is no one in my life who can come with me. Plus I would have to keep this all a secret.

I'm sorry to be repetitive but I am just so sad about feeling unsure of myself and questioning my identity, but fear of rejection and going through such a stressful experience alone is holding me back from being able to do anything about all of this. A diagnosis may also help me in university which is another reason I should get one. Thanks if you read all this ridiculous rambling. 

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  • Hiya! I just posted a very similar thread about looking for an autism diagnosis. Firstly none of that is rediculous rambling, I totally get what you mean and honestly it's nice to know I'm not the only one. It's scary looking for a diagnosis because when you've finally found something that fits, you don't want that to be taken away. And because ASD in women very rarely gets picked up on, you kind of have to fight for the diagnosis, whilst also still struggling with it internally. 

    Thankfully, my girlfriend goes to doctors appointments with me when I am too anxious to go alone, as the last time I went alone I had a meltdown for half an hour in the doctors office. 

    At the doctors appointment, you could try mentioning at the beginning that you stuggle to articulate what you are trying to get help with. This is something I do with every new doctor I see because it allows them to take into consideration that you might not be able to fully explain what you are trying to.

    I know people often advise to write everything down, but I personally find this more anxiety provoking than anything else and it often leads to a meltdown. But it works for some poeple :) 

    Also I have been through the University experience without a diagnosis and it lead to a lot of difficulties, and I experienced a lot of rejection from peers (bit of a common theme in my life... oh the joys of autism). Ultimately I dropped out after repeating my last year three times and having yet another huge nervous breakdown at the end of the January term. 

    Basically I don't have much advice because I'm a bit all over the place too haha, but I have 6 years on you so maybe you can learn from my mistakes Joy.

    From J

  • in reply to J

    This was actually really helpful because at least someone was in my position as well. Uni sounds troubling but hopefully knowing that I could get help will push me to go through with this whole thing. In school I suffered from a lot of sensory overloads which lead to me getting really hot/shortness of breath but I would usually ask to go the bathroom and then cry in the toilet and go and take deep breaths and flap my hands until I calmed down. Background noise in lessons was honestly painful so any extra help in uni would be much appreciated.

    I’ve been thinking about just writing everything out and having it with me when I go to the GP because I know I won’t be able to talk and my eye contact will already be bad so I can just look at the paper lol. Your girlfriend seems so lovely I really wish I could tell someone about this whole thing. At the same time if I go through it all alone i’ll feel more accomplished because I’m stubborn and want to do things by myself most of the time lol. Thanks so much for the reply. 

Reply
  • in reply to J

    This was actually really helpful because at least someone was in my position as well. Uni sounds troubling but hopefully knowing that I could get help will push me to go through with this whole thing. In school I suffered from a lot of sensory overloads which lead to me getting really hot/shortness of breath but I would usually ask to go the bathroom and then cry in the toilet and go and take deep breaths and flap my hands until I calmed down. Background noise in lessons was honestly painful so any extra help in uni would be much appreciated.

    I’ve been thinking about just writing everything out and having it with me when I go to the GP because I know I won’t be able to talk and my eye contact will already be bad so I can just look at the paper lol. Your girlfriend seems so lovely I really wish I could tell someone about this whole thing. At the same time if I go through it all alone i’ll feel more accomplished because I’m stubborn and want to do things by myself most of the time lol. Thanks so much for the reply. 

Children