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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... 

Parents

  • Hi, I’m on the waiting list at the moment, I am only six months in. I can very much relate with how you feel. My sister looks after autistic children after school so you can guess the answer I got. I don’t act like an autistic child because I am not one and have had 50+ years to perfect my set act and keep under the radar. The funniest reply I’ve had so far was, “ I’m sorry, I’m going to pray for you”. When I become non verbal, my wife calls it “radio silence “ we try to make small adjustments, social occasions are very hard for me so I do now get excused from most of them.

    Don’t worry what others may say, they are not you, only you know how you feel. If you strongly believe you are autistic then the chances are that you are. The old saying is “if something looks like a fish and smells like a fish, it most probably is a fish”

    I would just speak to your boss about your concerns, the whole company doesn’t need to know. Tell him you strongly believe you are autistic and can some small adjustments be made. When you get to lunchtimes, find a nearby park and disappear. You are quite entitled to self diagnose as you are the best judge of you. You identify as being autistic, most workplaces are quite accommodating now. The law states that they have to be.

  • in reply to Roy

    Hi there. Thank you so much for your comment, I really appreciate it, I especially like the part about the fish! Good point. You're absolutely right, only I know myself and how my brain works and how I feel, no one else does. My place of work is actually the most accessible and accepting and respectful of my self diagnosis. I told my boss and my colleagues/friends and they all look after me and respect my needs which really really helps. It's actually the only place I can totally unmask and talk about my probable autism and they absolutely 1000% respect it. I think what I'm most scared about is if I have my assessment and they say I'm not autistic, then what is it? But anyway, yes, thank you!! <3

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  • in reply to Roy

    Hi there. Thank you so much for your comment, I really appreciate it, I especially like the part about the fish! Good point. You're absolutely right, only I know myself and how my brain works and how I feel, no one else does. My place of work is actually the most accessible and accepting and respectful of my self diagnosis. I told my boss and my colleagues/friends and they all look after me and respect my needs which really really helps. It's actually the only place I can totally unmask and talk about my probable autism and they absolutely 1000% respect it. I think what I'm most scared about is if I have my assessment and they say I'm not autistic, then what is it? But anyway, yes, thank you!! <3

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