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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. 

Parents

  • What you are describing is very similar to my experience! I also identify strongly with the symptoms and felt that I really needed to know, but my parents / school teachers have similar views as your parents, and I was also very afraid of being misdiagnosed...so I keep delaying asking for an assessment for a really long time (many years). But the feelings of wanting to know and being afraid never really faded away and kept bothering me. I finally went to my GP this year and now waiting for an assessment. I wish I had been able to have an assessment earlier, and I was once really close to asking for one, having written down why I think I might have Aspergers, but then failed in getting the courage to push for it. But gradually I was more able to accept how I felt about all this and go through with the process. I became mentally ready. I am in a similar situation as you, as I will have to attend the assessment alone, and keep it a secret. I posted here a couple months ago asking about the diagnosis experiences that people who went alone had. And it turned out that it was possible to go to an assessment by yourself, quite encouraging. So I really understand what you are going through, and it may take time to settle things emotionally, and you are allowed to relax a bit if it sometimes feels too overwhelming. Once you feel ready, I wish you the best of luck in asking your GP. 

Reply

  • What you are describing is very similar to my experience! I also identify strongly with the symptoms and felt that I really needed to know, but my parents / school teachers have similar views as your parents, and I was also very afraid of being misdiagnosed...so I keep delaying asking for an assessment for a really long time (many years). But the feelings of wanting to know and being afraid never really faded away and kept bothering me. I finally went to my GP this year and now waiting for an assessment. I wish I had been able to have an assessment earlier, and I was once really close to asking for one, having written down why I think I might have Aspergers, but then failed in getting the courage to push for it. But gradually I was more able to accept how I felt about all this and go through with the process. I became mentally ready. I am in a similar situation as you, as I will have to attend the assessment alone, and keep it a secret. I posted here a couple months ago asking about the diagnosis experiences that people who went alone had. And it turned out that it was possible to go to an assessment by yourself, quite encouraging. So I really understand what you are going through, and it may take time to settle things emotionally, and you are allowed to relax a bit if it sometimes feels too overwhelming. Once you feel ready, I wish you the best of luck in asking your GP. 

Children
  • in reply to qwerty

    It’s nice to hear from someone in the same position. This gave me a little more courage haha. I hope your assessment goes well (I’m not sure if ‘well’ is the right word but hopefully you know what I mean). Keeping it a secret is so hard when I think about it so much. I wonder if I’ll tell my family when I get the diagnosis.

    Thank you!