I'm doubting my autism diagnosis

I was recently unofficial identified as autistic by a psychologist during a mental health needs assessment. I've noticed my autism ebs and flows over time. Sometimes I feel paralyzingly autistic, have meltdowns, sounds feel intolerably painful, and I can't stand how uncomfortable I feel to the point it severely impacts my mental health. Othertimes, I genuinely don't feel autistic at all. I socialize all day without crashing, can handle my sensory environment, etc. Othertimes I unmask and deep dive into my special interest and become "researcher autistic". Does anyone elses autism feel so different at different times? In comparison, my ADHD feels the same every day. The things that are difficult for me are always difficult for me. Maybe my frame of reference is off? Or maybe I'm sub-clinically autistic? 

Does anyone else feel this way? Is this normal? What does autism feel like for you guys? 

I've also noticed that the more I support myself and am accomidated, the less autistic I feel. Sensory supports makes socializing easier, masking doesn't feel nearly as burdensome. Is this normal? 

  • I can relate also. If I accommodate for myself with all the autism friendly strategies I don't struggle much at all (and could be considered subclinical). If I don't do this then life feels very difficult (and then I sit very solidly within diagnostic range). Also going through times of transition or major stress/loss seems to reset me to default struggling mode (literal thinking, over thinking, rigidity, dissociation under bright lights, more reliance on routines etc.) So I am trying to take extra care during these times, let myself lean into routines and interests more, carefully manage sensory load etc. Its just a balancing act, but certainly very helpful to have the correct information to help myself now.

  • It's great when you get to talk about your interest a lot, as that will energise you rather than be draining. I don't think you need to feel bad about not always being tired out!

    And it's lovely that you can then use your own experiences to help further your specialist knowledge! 

  • Yeah, I think it's when you clash it really feels like it flares up, but when you feel fine, it's not something you even notice yourself.

    I was thinking back to when my son was first evaluated by the school psychologist, and we had a meeting with him. I remember that when people were talking I was in my 'listening mode', looking away from people and playing with something in my hands. Then I could gather my thoughts and give eye contact and talk, then go back to listening mode. Here I was talking about my son potentially having it, and I must have looked so autistic myself to this psychologist as he knew what to look for. And this was years before it clicked for me!

  • I think I have a bit of this too. I work with autistic people, study autistic people (clinical psychology), all my friends are autistic people, etc. I am constantly in my special interest. Having it actually makes me better off socially because it gives me a valuable area of expertise and a way to relate to people that is more sociall acceptable. 

  • I just didn't realise I must have looked odd to other people

    I really relate to this. Most of the time I'm not aware of how my behavior is being precieved by others until the situation is quite progressed (they yell at me, leave me, etc). I think this is another reason why it feels like my autism ebs and flows. I'm only bothered by it (socially at least) when other people respond to it. Otherwise I am my socially awkward self in peace. Another time it bothers me, though, is when I need to figure out what's happening socially (what the rules are, how someone's feeling, etc) but can’t. I find my sensory and rigidity needs pretty easy to meet because I accomidate myself thoroughly. I think if I was more aware and didn't accomidate myself as much my struggle would be more consistent. 

  • Sure. If you find it useful go ahead. I hope it helps.

  • It is not a constant. The tide comes in and out.  When it comes in you can sail about happily  When it goes out it leaves you stuck and unable to move.

    I really like this analogy. It is clear and easy to understand. I will with your permission use this analogy in my employment tribunal stuff.Thumbsup

  • I've also noticed that the more I support myself and am accomidated, the less autistic I feel. Sensory supports makes socializing easier, masking doesn't feel nearly as burdensome. Is this normal? 

    I think you've hit exactly why accomodations are required, as it means we're less disabled by our traits. I'm still trying to figure out mine. 

    I'm most autistic in awkward meetings, especially when I have to talk about myself. Then I really struggle to mask it. It's funny I can look back and see this was always the case, I just didn't realise I must have looked odd to other people. But most of the time no one would know at all.

  • What everyone has said. When my kids were young I was positively social as I was so involved in my kids and what I could do with them, and baby groups I found so easy as the scripts fit with my fascination for development. 

    After burn out though everything is hard again and as my social-ness was heavily tied to that early development interest I'm back to struggling with conversations again.

    I really enjoyed the time I wasn't struggling but it's worse than ever now.

  • I really like the way you put this and completely agree.

  • What you describe seems perfectly normal - for an autistic person - to me. I’m like this too - sometimes I struggle much more than others - it’s a complex combination of different factors that can exacerbate or decrease my struggles as an autistic person, and no day is exactly the same. 

  • What you are describing is consistent with autism.

    It is not a constant. The tide comes in and out.  When it comes in you can sail about happily  When it goes out it leaves you stuck and unable to move.

    Whether you meet the criteria to be diagnosed depends on whether it is an annoyance or significantly adversely affects your life. This is what a formal diagnosis assesses.

    For some, even with the tide in, they can struggle. These people are easier to see and diagnose. 

    For others they can be a quirky normal in good times.

    Sometimes you can have just enough water, then waves can make you able to move or cause you to stick for a moment. This can be confusing. 

    Certain stressful life events make the tide go out, as can the cumulative effect of lots of small things, lights sounds, daily demands, forgetting to drink, not eating well, sleeping badly, etc.

    And if you stress yourself too much you can have burnout, where the tide goes out for months, not just a day or two.

    You can also change your harbour which has different characteristics. E.g. change, partner, job, where you live, some aspects of your life, and your tides may be higher or lower. Or the ground under water may change shape.

    Each person is different, sailing their own boat in their own harbour. 

  • If I understand correctly,  it's a suspected autism diagnosis from your psychologist? Or is it an official diagnosis? 

    I'm not officially diagnosed, only suspected.  For me my problematic traits and symptoms are very consistent,  but there are some long lasting fluctuations like for example long after giving birth I felt like I'm in a wrong body, I can't say if I got more sensitive now, or it's just me being me again as I have a toddler at home and suddenly reminds me how much I suffered in the nursery and school. My social and sensory issues, my special interests are there all the time. They don't change in intensity, only sometimes topics change. There were trams and trains in my childhood for several years,  there was Russian over 10 years, also graphic designing, now are aliens and space. You wrote that you have ADHD.  I don't know how AuDHD profile looks like, maybe it's something like you described, its worth exploring. As a young adult I went for party once or twice. It was an hour of my big effort followed by whole day in isolation to digest it somehow and relax.