New here and still in shock!

Hi everyone, I'm new here after a bit of a crazy week wrapping my head around the fact I might be autistic. My therapist (for anxiety disorder) recommended I looked at autism in females and took some preliminary tests. I went home and scored 174/200 on the RAADS-R, 154 on RDOS, and 36 on AQ. I grew up with an autistic family member and honestly it just floored me to see the results for myself. I didn't realise how much I had been hiding it and what it looked like in someone who is "functioning" with no other physical disabilities or learning difficulties. 

I thought the way I thought was normal and somehow everyone was just succeeding at controlling their brains more than me. 

I thought my anxiety/depression days were just bad mental health days to power through and be eradicated, not my brain actually shutting down and protecting me from the over-stimulus of the outside world. 

I thought everyone followed the rules of socialising better than me (make eye contact, don't fidget, don't go into detail, don't talk so much about your interests, ask questions about them, etc)....I didn't realise other people were doing this from instinct!

I could go on. It's like learning the whole world is not what you thought it was at all. All my struggles to stick at jobs and uni were just me FAILING at something everyone else manages. Now I realise just how hard I have been trying for 32 years to keep up with what comes much easier to other people. I am a smart woman and I thought I had to work out everything myself. If only I thought enough about my anxiety and meltdowns, I could control my brain into never having them. I read aspergirls and just cried. It's all about me! 

I have gone through so many emotions this week, shock, denial, acceptance, fear that actually I will turn out to NOT be autistic and then I will be alone again, never fitting in. Ugh.

Anyway, I am feeling overall positive but have really struggled to function this week with the huge amount of emotion and information I've gone through. I am going to my GP next week with a letter from my psychologist, test results and a list of the things I now realise are not NT traits and struggles. I am nervous that I won't get referred, any advice?

I'm looking forward to getting to know you all better!

Parents
  • Hi, Fast & The Curious. I haven't been on this forum for a long time, but on reading your post I wanted to share my experience with you as it seems quite similar to yours. I'm an Aspie female, and I found this out about 3 years ago. I was suffering with stress and depression caused by an incident at work and for some reason I remembered a tv documentary I had seen about Autism and started to wonder, so I did the AQ rest online and scored 41. Like you, I was in shock initially. Luckily at the time I had a GP who was a mental health specialist with knowledge of Autism and after discussing it with him he analysed my results and agreed with my self diagnosis. He offered me a referral for a formal assessment, but warned me I would not get any support afterwards as I am able to work. I thought about it and decided not to proceed, because I didn't see much point, but I did agree to the GPs suggestion of putting my results on my medical records. The referral decision is obviously a personal one though and many people feel happier having that 'formal' diagnosis. 

    Like you, before I found out I thought it was just me, that I was too sensitive and not assertive enough. I  went on assertiveness and communication skills courses. I learned how to do presentations. But still I struggled with relationships, both at work and in my personal life. I knew I was bright and a creative thinker, so why didn't I do well at school? I  always tried to be friendly and polite, and not say anything to upset people, so why did it feel like I had no real friends apart from my husband? Learning about Autism answered all these questions for me and I've been much happier since.  

    The two books which helped me most were: "Am I Autistic? A guide to autism & aspergers self diagnosis" by Lydia Andal and "A field guide to earthlings - an autistic/asperger view of neurotypical behaviour" by Ian Ford, both purchased  on Kindle. The field guide to earthlngs explains how neurotypical (non autistic) brains work, which has helped me understand the differences between how their minds work and how mine does, and has improved my work relationships.

    All this learning has also helped me understand my own needs, which I often overlooked in my struggle to fit in and conform to social norms. I successfully negotiated a decrease in my working hours and now ensure I have some time on my own each day to read or play games, to wind down and escape from the pressures of work and the travelling there and back on the bus. I value my individuality and have really finally become more assertive - each year I thank my colleague who arranges the works Christmas party for the invitation but let her know that I will not be attending. She knows I'm an Aspie and accepts it. I haven't made any secret of it, but I don't talk about it much these days - I don't let it define me, it's just part  of what I am. I love being different now though - it's actually brilliant.

    All the best with your own journey.

Reply
  • Hi, Fast & The Curious. I haven't been on this forum for a long time, but on reading your post I wanted to share my experience with you as it seems quite similar to yours. I'm an Aspie female, and I found this out about 3 years ago. I was suffering with stress and depression caused by an incident at work and for some reason I remembered a tv documentary I had seen about Autism and started to wonder, so I did the AQ rest online and scored 41. Like you, I was in shock initially. Luckily at the time I had a GP who was a mental health specialist with knowledge of Autism and after discussing it with him he analysed my results and agreed with my self diagnosis. He offered me a referral for a formal assessment, but warned me I would not get any support afterwards as I am able to work. I thought about it and decided not to proceed, because I didn't see much point, but I did agree to the GPs suggestion of putting my results on my medical records. The referral decision is obviously a personal one though and many people feel happier having that 'formal' diagnosis. 

    Like you, before I found out I thought it was just me, that I was too sensitive and not assertive enough. I  went on assertiveness and communication skills courses. I learned how to do presentations. But still I struggled with relationships, both at work and in my personal life. I knew I was bright and a creative thinker, so why didn't I do well at school? I  always tried to be friendly and polite, and not say anything to upset people, so why did it feel like I had no real friends apart from my husband? Learning about Autism answered all these questions for me and I've been much happier since.  

    The two books which helped me most were: "Am I Autistic? A guide to autism & aspergers self diagnosis" by Lydia Andal and "A field guide to earthlings - an autistic/asperger view of neurotypical behaviour" by Ian Ford, both purchased  on Kindle. The field guide to earthlngs explains how neurotypical (non autistic) brains work, which has helped me understand the differences between how their minds work and how mine does, and has improved my work relationships.

    All this learning has also helped me understand my own needs, which I often overlooked in my struggle to fit in and conform to social norms. I successfully negotiated a decrease in my working hours and now ensure I have some time on my own each day to read or play games, to wind down and escape from the pressures of work and the travelling there and back on the bus. I value my individuality and have really finally become more assertive - each year I thank my colleague who arranges the works Christmas party for the invitation but let her know that I will not be attending. She knows I'm an Aspie and accepts it. I haven't made any secret of it, but I don't talk about it much these days - I don't let it define me, it's just part  of what I am. I love being different now though - it's actually brilliant.

    All the best with your own journey.

Children
  • Thanks for the recommendations! I read the guide to earthlings over the weekend. It really helped, like, wow, I had no idea. I already feel like I can understand why people don't get me sometimes, as well as why I struggle with overwhelm in uni when it seems like others are getting it (even though many of my lecturers think I'm one of the smartest in class, they don't realise how much stress I go through trying to grasp things in the beginning - now I realise not everyone is seeing 20,000 details at once, they are seeing the forest first...makes so much sense!). 

    I had a wee wobble a few days ago when I started to realise that I would never be "cured" whereas I'd always told myself someday I would get to the bottom of my anxiety and be "normal". That sucked. But I know that that was niave, and it's still better I know the full story so I can work on it from now on, than spend a lifetime trying to cure myself. I guess it's just grieving the expectation. 

    I will go download the next book now!