Should I try to get a diagnosis?

Hi all,

I've been on this site several times over the last few years but never registered or got in contact with anyone. But things are becoming more difficult for me and I'm not sure what to do - I'm just so confused! 

I've always felt odd and apparently had some 'anger issues' as a child when things/plans changed or somebody touched my stuff. And to be honest I still lose it when this happens now (I'm 37 years old); it gives me 'physical' pain and I find it hard to control myself - doesn't go down well at work. People just think I'm rude, furious and eccentric. Luckily they often laughed about it rather than complain about me, although I cannot understand how they can take it so lightly, they just don't seem to understand what it does to me. A year ago I came to my office and someone had moved everything around and restructured the room - I couldn't go back to work for two weeks and it was a tough and long process to get used to this change. I work as a researcher and the upside was that I was leading the laboratory, everything had structure, so that was my 'happy place'. Furthermore, the office outburst lead to a lengthy conversation with my boss, who has been diagnosed with ASD and suggested for me to seek a diagnosis, not just because of the outburst and following absence but also because of other things I hadn't noticed. We had so much in common and for the first time I felt understood and 'okay' with myself, so I didn't see a need to get a diagnosis. I was pretty happy in my little world but fast forward a year and a half, I had to start a new job elsewhere (it's the nature of research not me quitting or being fired - the funding ran out and I had to move on) - this is where my problems began. 

I have a different way of getting to work, it's a new place I don't know and I have to TALK to people ALL the time. I somehow made it through the first couple of months, I made my workplace fit, everything has it's place and I feel a bit better now, but there's people... lots of them. My work requires attention to detail, so I'm fairly good at it I think (I used to be in my old job), but my new work place is without any structure, guidance or clear instructions, so I feel lost and I cannot do my job, not well anyway. My office space has these awful bright lights and my colleagues insist on keeping them on, even during the day and I can't open the window 'because it's too cold', whilst they stink the room out with their perfume - I feel as if I'm suffocating and I can't get a clear thought in that place! I'm taking days off to work from home and to escape, my boss doesn't know and it's not unusual in my job, but I'm probably having too many of those days because I feel overwhelmed at work and need some quiet time to focus. Because I don't know people at my new work, I'm not sure I'm 'getting' them; I don't know if my colleagues like me or make fun of me, it's so bloody confusing! My work also includes outreach, which I like, I enjoy talking to the public about my work (on stage giving a talk), but I try to avoid conversations. I've learned what to say at first, but after a few sentences I'm not sure how to keep the conversation going. I often misunderstand what people mean. I had to go to a social thing yesterday with people from the public and my other boss (I have two) and I thought I was doing well, but my boss said some things to me about my work and I don't understand what she meant. She seemed angry (I think) but I'm not sure and I don't know if it was addressed at me or my other boss?! I'm really worried about getting fired, I just seem to not understand what they want. I think they want me to be proactive and talk to other people to get ahead with my work, which would be a nightmare. But then, as said, I'm not sure, I'm just so confused about everything, so naturally, I'm at home today, trying to make sense of it all - to no avail.

I performed really well in the interview, hence why I got the job I suppose. I can do that sometimes, if the circumstances are right and things go as expected. Now I feel like they expect me to be like that person they saw in the interview... I don't know what to say to them. I can hardly go to my boss and say I can't do bright lights and chaos and I need routine and clear instructions, I don't understand what you or my colleagues are saying most of the time and I'm ignoring phone calls because they're hell for me - that's pretty much saying I'm crazy. I feel like perhaps an ASD diagnosis might make people understand better, but then I'm not certain I am and I don't know how to talk to my GP about it. As a child, I was diagnosed with ADHD, which my family said was nonsense. I have spoken to my family  about the ASD possibility and they said that's also nonsense and that I'm just weird and eccentric with a strong mind and several quirks, although my partner says I'm not 'normal' he has gotten used to me and tries to help me. He often works as an interpreter for me at social events, picks up conversations for me and he's fine if I can't make myself go also, I avoid it at all cost. But I can't avoid work-related events and I'm alone and I feel as if everybody speaks a different language. I don't think I can avoid work much longer without getting fired and what if I'm not autistic at all? What if they tell me I'm just completely insane? Sorry for the long text, I just wish this world wasn't so bloody confusing. 

Parents

  • I second also what  states in terms of getting a diagnosis. 

    In terms of how to go about getting referred ~ I recommend writing first to your GP with a brief introduction to the following information printed out and crossed, ticked, underlined or marked accordingly regarding the presentation of your autistic spectrum traits:


    https://www.autism.org.uk/about/behaviour/sensory-world.aspx

    Autism Spectrum Quotient (AQ) (Adult) https://www.autismresearchcentre.com/arc_tests

    https://www.autism.org.uk/about/diagnosis/adults.aspx


    I included the 'about diagnosis sheets' in my letter (which I got (and you can get) in an adult information pack from the National Autistic Society by dialing 0808 800 4104) to save any ignorance regarding referral and diagnostic protocol.

    In regard to the Autism Research Center tests you could of course bulk up your case and include everything that you find relevant to your experience of things. Some Clinical Commissioning Groups are of course rather limited in their funding allowances ~ so having a good case for funding can be helpful. 

    Have a good one and may it be filled with infinitely more!


Reply

  • I second also what  states in terms of getting a diagnosis. 

    In terms of how to go about getting referred ~ I recommend writing first to your GP with a brief introduction to the following information printed out and crossed, ticked, underlined or marked accordingly regarding the presentation of your autistic spectrum traits:


    https://www.autism.org.uk/about/behaviour/sensory-world.aspx

    Autism Spectrum Quotient (AQ) (Adult) https://www.autismresearchcentre.com/arc_tests

    https://www.autism.org.uk/about/diagnosis/adults.aspx


    I included the 'about diagnosis sheets' in my letter (which I got (and you can get) in an adult information pack from the National Autistic Society by dialing 0808 800 4104) to save any ignorance regarding referral and diagnostic protocol.

    In regard to the Autism Research Center tests you could of course bulk up your case and include everything that you find relevant to your experience of things. Some Clinical Commissioning Groups are of course rather limited in their funding allowances ~ so having a good case for funding can be helpful. 

    Have a good one and may it be filled with infinitely more!


Children
  • Thank you very much for your detailed reply and for all the info, I want to be well prepared when I see my GP and this will most definitely help!

    Have you (or anyone who might read this) got any advice about work? I don't think I can do anything about the office situation, but I need to speak to my bosses about the way they communicate with me. I still don't know what she meant the other night. I don't want to tell her that the lights were too bright and there were too many people, which put me on edge and I just couldn't understand what she was saying, because all I could think about was to run. But I think it was important and I need her to repeat it somewhere quiet 1:1. It's also important for the future, as I often miss or misinterpret information given to me and end up looking completely unqualified for the job (which I'm not). How could I explain this without looking crazy or incompetent?