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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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  • I'm sorry your facing this alone, however, coming to the realisation that you may be autistic whilst about to start uni is amazing timing as they is a lot of support in higher education.

    If I were you I'd write down all of the reasons you believe you are autistic in a letter and give this to your doctor. This will enable you to get across everything you want to. Are you planning on moving away to uni? If you are you might be better to wait until September and then approach your GP in your new area as the assessment would be carried out under your new NHS authority and it could save any confusion with you being transferred onto different waiting lists.

    To get assessed in my area I was asked to fill in a screener questionnaire, which I sent off to the local autism unit. I accompanied this with 8 sides of A3, which outlined examples of how I behaved in an autistic way. These examples were mapped out against the DSM-V criteria - mamapineappleblog.wordpress.com/.../

    Have you approached your university’s disability department about your suspicions? They may be able to put adjustments in place to help you with the challenges you face, such as having access to a low sensory environment in the library. There are even a few university’s who will pay for your autism assessment so that you can receive extra support asap. Once you have your official diagnosis you can also apply for the Disabled Students Allowances. This could pay for an autism mentor to help you to develop coping strategies

  • in reply to NAS24859

    This is actually a very good point as I am moving away. I didn’t even think about contacting my university about this and it would probably be easier for me to wait. I’ll try and email someone about it because an issue I have right now is that I got stuck with a shared bathroom accommodation (which gives me so much anxiety I can’t bare it) so maybe if they knew about my autism they would help me change that. When I was applying for my student finance I saw the section about having autism and my heart dropped because I was like oh, that could be me. Anyway thanks so much for this! I wouldn’t want to get caught up in that whole transferring business because I’m moving to a whole new city that’s pretty far.

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  • in reply to NAS24859

    This is actually a very good point as I am moving away. I didn’t even think about contacting my university about this and it would probably be easier for me to wait. I’ll try and email someone about it because an issue I have right now is that I got stuck with a shared bathroom accommodation (which gives me so much anxiety I can’t bare it) so maybe if they knew about my autism they would help me change that. When I was applying for my student finance I saw the section about having autism and my heart dropped because I was like oh, that could be me. Anyway thanks so much for this! I wouldn’t want to get caught up in that whole transferring business because I’m moving to a whole new city that’s pretty far.

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