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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

  • Hello, if you think you are autistic, then you are. You are the expert on yourself, many autistic people are self identified.

    We as the autistic community included many self discovered autistic people who don’t have a diagnosis but don’t want one either because the waiting list is too long and sometimes because self identification is sufficient and validating enough.

    You are expert on your autistic experience, so regardless of formal diagnosis you can still be autistic and identify as such.

    You say that other people around you don’t think you are autistic, but this community is so diverse. There is not one way to be autistic, this is what makes our community so beautiful.

    Being autistic is a different way of being human which includes our own distinct communication styles, sensory and emotional experiences, monotropic attention tunnels (which are at the core of your dedicated interests) and a need for predictability (amongst other aspects of autistic experience).

    So the things you mention in your post (such as stimming, needing to know every detail before the training in Leeds, your special interests, your sensory needs and more) are very much because you are autistic.

    Welcome to your autistic community.

     I hope this reply helps to validate your autistic experience.

  • in reply to Ausomely Autistic

    Thank you so so much for your comment. You've definitely made me feel better Slight smile

  • in reply to Cameron

    You are very welcome. I am glad I can help you so much. This is what is so great about our autistic community.

    Good luck on your autistic discovery journey and throughout this process there will probably be many more times when you question whether you are autistic. This is natural for many of us late discovered autistic people as we understand and apply this new knowledge and identity to different aspects of our life. We begin to reflect on life through a new autistic lens. Be kind and patient with yourself it takes time to adjust and accept an autistic identity.

    However you  know yourself better than anyone else, I hope this makes you feel more confident to trust your own autistic instincts.

    Hopefully you relate to this video about different stages of autistic discovery:

    https://youtu.be/oo34mppLMqE

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  • in reply to Cameron

    You are very welcome. I am glad I can help you so much. This is what is so great about our autistic community.

    Good luck on your autistic discovery journey and throughout this process there will probably be many more times when you question whether you are autistic. This is natural for many of us late discovered autistic people as we understand and apply this new knowledge and identity to different aspects of our life. We begin to reflect on life through a new autistic lens. Be kind and patient with yourself it takes time to adjust and accept an autistic identity.

    However you  know yourself better than anyone else, I hope this makes you feel more confident to trust your own autistic instincts.

    Hopefully you relate to this video about different stages of autistic discovery:

    https://youtu.be/oo34mppLMqE

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