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.

  • 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!

  • It was good to hear that the field guide to Earthlings helped you. I have just finished re-reading it and had forgotten some of it, so it was a great refresher exercise and I was able to see some things a bit differently than I did first time, now having the benefit of a couple of years of acquired knowledge and observation from a different viewpoint.

    I want to reassure you that you don't need to be "cured". Life can be difficult for everyone in different ways. NTs can be bullied, ostracized from groups, and grieve over various losses in life - bereavements, divorces, estrangements, family feuds, etc. Some of them live their lives being told what to do by others, never having the will or the ability to make their own decisions. Many of them cannot learn independently, but have to learn in "lock step" with their group, having brains that screen out facts and ideas that are not accepted within their group. I think that's sad. It's ironic in a way that we are seen as "disabled" when we are in fact highly able. Able to examine facts without prejudice or group influence. Able to see details and make improvements. Able to sustain focus for long periods of time.

    It's important not to be influenced by others and to have faith that you can make your own decisions. People tend to be influenced by those they see as "experts", those who are more dominant in their social groups, or "celebrities" they admire/ want to emulate. It's a bit pointless telling most NTs to make their own mind up about something - they may think they do, but their "mind maps" and behaviour patterns don't allow it. But we can, as long as we have faith in ourselves and really make objective observations and judgements, researching facts rather than opinions. You'll remember in the book the reference to how someone will want to visit a tourist attraction based on whether someone they know thinks it's the place to go. I would ask people who have been to a place what their experience was, but my decision to go or not would be based on  facts such as journey length, temperature, noise levels, how crowded it was likely to be, etc. I would also do my own research on the climate, food, architecture, fight times, transfer times, and types of accommodation available, before making a decision.

    We all have great potential.

     

Reply
  • It was good to hear that the field guide to Earthlings helped you. I have just finished re-reading it and had forgotten some of it, so it was a great refresher exercise and I was able to see some things a bit differently than I did first time, now having the benefit of a couple of years of acquired knowledge and observation from a different viewpoint.

    I want to reassure you that you don't need to be "cured". Life can be difficult for everyone in different ways. NTs can be bullied, ostracized from groups, and grieve over various losses in life - bereavements, divorces, estrangements, family feuds, etc. Some of them live their lives being told what to do by others, never having the will or the ability to make their own decisions. Many of them cannot learn independently, but have to learn in "lock step" with their group, having brains that screen out facts and ideas that are not accepted within their group. I think that's sad. It's ironic in a way that we are seen as "disabled" when we are in fact highly able. Able to examine facts without prejudice or group influence. Able to see details and make improvements. Able to sustain focus for long periods of time.

    It's important not to be influenced by others and to have faith that you can make your own decisions. People tend to be influenced by those they see as "experts", those who are more dominant in their social groups, or "celebrities" they admire/ want to emulate. It's a bit pointless telling most NTs to make their own mind up about something - they may think they do, but their "mind maps" and behaviour patterns don't allow it. But we can, as long as we have faith in ourselves and really make objective observations and judgements, researching facts rather than opinions. You'll remember in the book the reference to how someone will want to visit a tourist attraction based on whether someone they know thinks it's the place to go. I would ask people who have been to a place what their experience was, but my decision to go or not would be based on  facts such as journey length, temperature, noise levels, how crowded it was likely to be, etc. I would also do my own research on the climate, food, architecture, fight times, transfer times, and types of accommodation available, before making a decision.

    We all have great potential.

     

Children
  • Thank you, I understand that curing autism isn't needed and don't feel that way at all. I just thought I could cure my anxiety and finally fit in and manage everything like everyone else did. It's a bit of a shock to realise that no, the reason I struggle is a lifelong issue, but I am feeling confident that I can now overcome my anxiety issues by looking at them through an autism lens. However, I have also started to come to terms with the fact that I will never not be autistic and therefore there will be issues from living in a non-autistic world that I will always have to tackle.