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Struggling with waiting for an answer

Cameron

I'm currently on a waiting list for an assessment (one and a half years into a three year wait) and I'm struggling. I'm three weeks into a new job and I'm already identifying ways in which my potential autism is impacting my work. I've done hours and hours of research into autism and believe I'm on the spectrum. I've spoken to friends and family, people with autism, and I'm getting mixed messages. One person who works with autistic children thinks I'm not, but he's an online friend and I'm not a child, a relative who has worked with autistic children also doesn't think I'm on the spectrum but she rarely sees me. My flatmate who thinks they're autistic also doesn't think so. I've had autistic people who work for the organisation I'll be getting assessed by say I'm definitely autistic. I'm so confused and frustrated. I need to stop asking people. The thing is, if I'm not diagnosed with it, then what's going on with my brain? How am I supposed to explain my actions at work? If I'm not on the spectrum, how do I explain the sensory overloads I have, my sensory issues, all my special interests, the social things I don't understand, the fact that I can't stand eye contact and that too much eye contact makes me feel upset and overwhelmed, the excessive stimming (especially during certain emotions or anything relating to my special interests), sometimes I go mute or only make noises to communicate, my sensitivity to heat, the distress I feel with surprises and change and spontaneous activities being sprung on me, having to have my boss make a plan of every detail about our upcoming training in Leeds (the transport we're taking, the route, where toilets will be on the way, where we'll be stopping, who I'll be with, the location and where a quiet room will be, when things will be, when breaks will be, the list goes on and on), my sensitivity to lots of noise, certain noises and smells, my discomfort in shops that I've always struggled with, the list goes on. How do I explain all that if I'm not diagnosed? Maybe people just don't see half the stuff I experience but I'm so scared of not getting diagnosed. I don't know what to do about it... 

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  • Hi Cameron, I can identify with a lot of what you have said. I was diagnosed a week ago today after a four year wait. I felt exactly the same as you, with a lot of the same symptoms. When I was about to get the results, I remember thinking what if they say I am not autistic? What does that mean and why am I like what am I like if I am not autistic? 

    To be honest, if you feel you are autistic, I would be really surprised if you don't get a diagnosis (assuming you want one). After all, you are the world's leading expert on yourself. 

    Don't be put off by people around you who don't think you are, whatever their expertise: my wife has worked with autistic children for 30 years, she was my informant in the diagnostic process, and never thought I was autistic until I was diagnosed. That's down to masking.

    So my advice would just to be that you know yourself best, you think you are autistic, you almost certainly are, the diagnosis will take care of itself (though it will take time), and in the meantime, trying to get your employer to make reasonable adjustments on the basis you are going through a lengthy process to confirm things should, if they are a good employer, be fine.

  • in reply to MartinW

    Thank you so so much for your comment! It really means a lot and you're absolutely right, I'm the only person who knows my brain, how I feel, what I think. I'm having the exact same feelings, what if they say I'm not autistic, then what's going on? I definitely want a diagnosis, I have OCD, tourettes, anxiety, dyslexia, potentially ADHD too, it's a lot for one brain, so for me every label/diagnosis really helps me understand what I need. My work place is actually the most respectful of my self diagnosis, I don't mask at all there. Congratulations on your diagnosis! That must feel so relieving? 

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  • in reply to MartinW

    Thank you so so much for your comment! It really means a lot and you're absolutely right, I'm the only person who knows my brain, how I feel, what I think. I'm having the exact same feelings, what if they say I'm not autistic, then what's going on? I definitely want a diagnosis, I have OCD, tourettes, anxiety, dyslexia, potentially ADHD too, it's a lot for one brain, so for me every label/diagnosis really helps me understand what I need. My work place is actually the most respectful of my self diagnosis, I don't mask at all there. Congratulations on your diagnosis! That must feel so relieving? 

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