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The Struggle is Real

Scott

Hello, 

I've been trying to get a referal for the past year and I'm so exhausted with the world right now. I called my GP surgery just before the pandemic sent us into lockdown and was told the one and only adult assessment centre was closed to new referrals and to call back. What is it with people asking you to call them like its such a simple thing? Phone calls stress me out so much - I can spend weeks just building up to it, trying to plan out what might be asked and what I should say. 

Anyway long story I finally built myself up to contacting the GP again since lockdown/furlough etc has affected my routines and I can't say I feel human right now. I used their econsult system so I could avoid having to speak to receptionists and it allows you to give details of your issue. I waited all day for the call back yesterday to get an email asking me to call them to arrange an appointment but this was just after their reception closed so needless to say I was on the verge of loosing it last night and barely slept worrying about having to call today. I call them and get told someone will call me after 9.30 - great more waiting. Then get a call from a lovely but new GP in training who wasn't sure about the procedure. Sent me a questionnaire about autism which I'm sure i've fiilled out before and then said she'd try and call the Diagnostic assessment centre and get back to me sometime today. So now I can't do anything or focus on anything until I get that call. 

I just want to know once and for all if I'm on the spectrum. I've effectlively self diagnosed for the past year - which gives me serious impsoter syndrome cause i feel like a fraud. My partner is a former teacher and worked with children on the spectrum and it was during lockdown that he realised the similarities between me and the children with autism he taught. So talking through everything I'm practically a textbook case of autism which explains why I've always felt alien to everyone else. I work in an office and management are far from supportive or helpful. I'd previously been diagnosed with anxiety and when I told them I was told I needed to just stay calm and "buck up" - when I went back to them after the first lockdown (post furlough) and explained I think my anxiety is tied to being on the autism spectrum they looked at me like I had four heads and said what can we do. I explained the things which make it difficult for me to do my job e.g the fluroscent lights are awful, theres too many noise distractions around me ( can I wear my headphones ) and explained I need to know when things are happening so I can plan for them and organise. I practically got laughed at and told well you need a diagnosis before we can really do anything. 

Sorry for this rant and if anyone reads this thank you for sticking with me. I guess I just want to know I'm not alone and that other people have had similar struggles with getting reffered for diagnosis and struggles with life/work. 

Thanks. 

Parents

  • Yeh the phone thing, it takes so much energy .I filled in a questionnaire once that said "do you have difficulty understanding people on the phone" the answer "i don't do phones "

    For me i couldn't handle the work thing ,i tryed it once just ended up standing outside sobbing then going home ,that was working with two other people ,lasted about 18 months but spent over half that time on diazepam.

    I have worked for myself for about 17 years , only way i could cope ,organized my world around what i could manage and the family.

    It must be really hard working in an office having deadlines and loads of people around . 

    I am still not sure whether to get a diagnosis ,do i need one or not ? will it change anything ? 

    I did find embraceasd.com a good site for info

    There is a good blog on autistic imposter syndrome

  • in reply to mael

    Thank you. That's exactly it just the "normal" ability to make a phone call is so draining and I don't think people understand that at times. 

    I've struggled with work ever since my first job at 17. I developed a routine as a coping strategy where I'd never stay in a job for more than a year. So needless to say I've had a lot of jobs over the years. This is my first job that I've stayed in for five years now but its been a struggle. Like you say we have targets to meet and often things get changed last minute and we're just expected to click our fingers and adjust but I need more time to process what's happening. 

    I've spent years just coming home from work and crying or going into a meltdown. Sometimes because of something that was said to me at work, or because the train home was too busy and loud. 

    I've heard/read a lot of mixed responses on getting a diagnosis and I guess it all depends on the person individually. I've been sort of self diagnosed for a year now but I feel like I'm not allowed to say I'm autistic without a formal assessment. Even though everything I've read on the subject fits with me and the struggles I have. I envy that you work for yourself that very much sounds like the dream. I'm a writer and hopefully someday soon will have an agent. Thats the hope anyway so when I'm earning from my writing I can work from home. 

    Lockdown has just made me see things differently and in some way I don't feel like I have the ability or energy I guess to mask the struggles anymore. Which is causing difficulty with work because they don't understand the problem. Its one of those toxic work environments with a lot of male members of staff who don't "believe" in mental health so when I try to explain autism they think I can just snap out of it. 

    Thanks for sharing. Its very relatable and good to know I'm not the only one. I'll check out that blog it sounds really helpful. 

Reply
  • in reply to mael

    Thank you. That's exactly it just the "normal" ability to make a phone call is so draining and I don't think people understand that at times. 

    I've struggled with work ever since my first job at 17. I developed a routine as a coping strategy where I'd never stay in a job for more than a year. So needless to say I've had a lot of jobs over the years. This is my first job that I've stayed in for five years now but its been a struggle. Like you say we have targets to meet and often things get changed last minute and we're just expected to click our fingers and adjust but I need more time to process what's happening. 

    I've spent years just coming home from work and crying or going into a meltdown. Sometimes because of something that was said to me at work, or because the train home was too busy and loud. 

    I've heard/read a lot of mixed responses on getting a diagnosis and I guess it all depends on the person individually. I've been sort of self diagnosed for a year now but I feel like I'm not allowed to say I'm autistic without a formal assessment. Even though everything I've read on the subject fits with me and the struggles I have. I envy that you work for yourself that very much sounds like the dream. I'm a writer and hopefully someday soon will have an agent. Thats the hope anyway so when I'm earning from my writing I can work from home. 

    Lockdown has just made me see things differently and in some way I don't feel like I have the ability or energy I guess to mask the struggles anymore. Which is causing difficulty with work because they don't understand the problem. Its one of those toxic work environments with a lot of male members of staff who don't "believe" in mental health so when I try to explain autism they think I can just snap out of it. 

    Thanks for sharing. Its very relatable and good to know I'm not the only one. I'll check out that blog it sounds really helpful. 

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