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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

  • I can relate to the difficulties you describe here and can see how the conflicting messages you received are confusing. The diagnostic process is a thorough one, more so than conversations with others in my opinion, so try to take things that other people say (like doubting autism) with a pinch of salt so to speak.

    I will use the word ‘you’ in the rest of this comment, I’m not intending it to mean you personally, but rather as a way to refer to people in the situations I’m describing. I try and avoid the word ‘you’ where possible, but I’m finding it difficult to replace today. Apologies.

    Autism is such a personal thing. A phrase that sticks with me is ‘when you’ve met an autistic person, you’ve met ONE autistic person’. That’s because we are all so different. The spectrum is so broad. People can’t in passing tell you that they don’t think you’re autistic, because they don’t know all of the aspects to you and the difficulties you encounter/navigate each day. Professionals who diagnose autism form multi disciplinary teams to discuss each person for this exact reason. To challenge one another’s judgements, moderate decisions and to consider the presentations from multiple angles. One person, in my opinion, can’t manage this task in a matter of moments, particularly when it takes a whole team a significantly longer time to do this.

    I do hope this reassures you, that was certainly the intent behind this reply so I hope it lands that way.

Reply

  • I can relate to the difficulties you describe here and can see how the conflicting messages you received are confusing. The diagnostic process is a thorough one, more so than conversations with others in my opinion, so try to take things that other people say (like doubting autism) with a pinch of salt so to speak.

    I will use the word ‘you’ in the rest of this comment, I’m not intending it to mean you personally, but rather as a way to refer to people in the situations I’m describing. I try and avoid the word ‘you’ where possible, but I’m finding it difficult to replace today. Apologies.

    Autism is such a personal thing. A phrase that sticks with me is ‘when you’ve met an autistic person, you’ve met ONE autistic person’. That’s because we are all so different. The spectrum is so broad. People can’t in passing tell you that they don’t think you’re autistic, because they don’t know all of the aspects to you and the difficulties you encounter/navigate each day. Professionals who diagnose autism form multi disciplinary teams to discuss each person for this exact reason. To challenge one another’s judgements, moderate decisions and to consider the presentations from multiple angles. One person, in my opinion, can’t manage this task in a matter of moments, particularly when it takes a whole team a significantly longer time to do this.

    I do hope this reassures you, that was certainly the intent behind this reply so I hope it lands that way.

Children