Level of autism

Hi, 

I was diagnosed and told im level 1 Autistic. On the internet it says the mildest form of autism but I feel I struggle with all aspects in my life. I did try and explain although I seem quite at times it's because I shut down in myself when anxious like during my assessment. I'm worried if means I'm just mild and don't need as much help or understanding or I should keep masking because people think I'm weird. Has anyone else found this? 

Thank you. 

Parents
  • I got very hung up on my level one too when diagnosed in January. I got obsessed with the score even - how close was I to where 1 meets 2, or was it only a bit beyond the ‘on the spectrum’ bridge or what? The thing that helped me relax a bit about was hearing about spiky profiles. As it’s the changing environment that disables us, as well as other factors that give you your ‘spoons’ for the day, sometimes (maybe a day at home) we’ll feel less challenged or anxious and start to feel imposter syndrome. Then the next day, we are back to masking, dealing with sensory overload, being drained as we mask, etc. leaving no doubt at all. The struggle is real. And permanent. I got in touch with my assessor so me weeks after diagnosis wanting more of a precise fixed point placing on some sort of axis and they told me to stop looking it like that. I suppose in a way the fact that I did get so intensely fixated on wanting that specificity tells me a lot in itself! I’m sure you can empathise, and that tells you something too…

  • Exactly.
    "Level 1" is only helpful if you actually meet (whatever standard) criteria is supposedly "level 1".
    The arbitrary level system doesn't actually describe exactly what our experience of autism is actually like.
    If I went by the social driven decription given by https://www.verywellhealth.com/what-are-the-three-levels-of-autism-260233 for example then I'm not even level 1, assumably I wouldn't even be on the spectrum. But being able to go into a meeting, shake a strangers hand (hold off sanitising said hand until after I leave) meet their gaze and gently smile at them and then hold a conversation for 10-20 mins has never stopped me getting a meltdown from geting sensorially overloaded.
    It's almost never a case of "am I austistic? And how much? " it's "where/when am I autistic? And is that a negative or a positive in this specific incidence?" Because yes, sometimes it is a positive.

    By the way, when you say "spiky profiles" do you mean like the image I have in my profile description?

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