I'm doubting my autism diagnosis

I feel like me all the time. Certain behaviours are there all the time, I don't change the way I think. If I am well rested and calm, then things are easier a d I am pretty unlikely to be flustered by anything. If I am overloaded or under time pressure it becomes harder.

Socializing with people I know is a lot different to people I don't. And large groups are always intimidating. New locations are always anxiety inducing, although anticipation is often worse than the actual thing. The less relaxed I am the worse it is.

So traits vary depending on circumstance, time of day and whether I've had a drink.

To doubt yourself is normal because of the fluctuating abilities and masking. But just try and do something new and it is obvious.i just have so many routines I hide it.

While a psychologist does the assesment, not all psychologists are qualified to perform official assessment. All you have is a suspicion you are autistic. Note that to be formally diagnosed it has to significantly impair you in more than one domain, not just be an inconvenience. You also need to have had done traits throughout your life. Other things can mimic autism, but the won't have to element. Autism is a lifelong thing and is what you get if they have ruled put everything else.

If you have 2 people, one on their own struggling and the other supported by a partner, one could struggle and the other be able to cope. Technically they are the same but one may not meet the diagnosis criteria. So it is also dependent on situation to a certain degree.

I reread this, and it is kind of hypothetical if you don’t have a formal autism diagnosis. You cannot fully be in a position to doubt your unofficial diagnosis if it is not a formal diagnosis. Do you mean you identify with being autistic? The psychologist alone is unable to give you a diagnosis unfortunately. 

Are you diagnosed (as per your post title) or your psychologist thinks you need assessing because of traits you also seem to recognise,? 

I think everyone's Autism is unique to them - we share some things but not exactly, but we can be very different too . So when you read articles or post , you may relate to some but not all

There's plenty of diagnosed Autistics that get the "imposter" syndrome - I think that's just normal post diagnosis journey - I certainly have though this too

is you go for an assessment  - remember a diagnosis just mean you meet the enough of criteria, so you could have multiple traits but not get the diagnosis - I think that's why the assessments process feels very worrying

Knowing more about Autism and picking up on the things like I've mentioned has already been very useful, so I'm eager to go through the assessment. Not sure if I'll feel this way after assessment, but getting a positive diagnosis doesn't bother me, just the limbo.

The part at the end there really resonated with me: being in a weird limbo. This is why I put mine off for many years, was afraid of what it would mean. My ADHD diagnosis explained a lot. But there was something else going on, I couldn’t quite put my finger on it. The way I’d mirror people’s mannerisms and behaviour if I spent time with them and liked them. Even movie stars, I’d copy their quirks to fit in socially and express myself. The way I’d behave when really stressed, monotone voice, weird sounds I’d like when very stressed too, not able to cope with people just tuning up, routines breaking etc and need to quiet and solitude. When I finally got diagnosed the clinician said it was a very clear case of someone high functioning but masking heavily - I felt it, but didn’t know it until then. I felt a validation and risked being told ‘no’. I actually had been told in 2022 that it was ‘just anxiety’ by the first psychiatrist when I suspected ASD. I got a 2nd opinion this year and finally some answers. Turned out, the first doctor didn’t use the best criteria and tools to diagnose a high functioning adult, instead, used tools appropriate for diagnosing children (I was not a child at the time) so I was very nervous about going through it all again but glad I did. I would encourage you to pursue it as it may always be on your mind. What’s worse for you: never knowing, or getting more clarity? Which can you tolerate?

Sounds similar to my situation. I was seeing a counsellor who based on things I was saying suggested the possibility of Autism. She wasn't qualified to do any sort of diagnosis (and made that clear). It was a remark based on her knowledge of the subject, and her having  Autism and ADHD herself. We went through some of the content from NAS together and it was seeming a strong possibility so I put in for and am still awaiting assessment.

While waiting, I tend to go back and forth. Sometimes I think yes, other times I'm 50/50. There are things that I have noticed though like when I get more stressed or overwhelmed, the tags on clothing become annoying, I'll pace about more, fidget in repetitive ways, be less sociable, more tired, etc. I'm never sure if things I'm picking up on are confirmation bias though. I think I had said in another thread about not wanting to use phrases saying "I have autism" before I get a diagnosis, because of the uncertainty, and not wanting to claim something if I end up not being, even if it seems likely and there is family history of Autism.

The thing that worries my most about the assessment I think is if I am NOT diagnosed with Autism. AFAIK you can be diagnosed, but not being diagnosed doesn't mean you don't have Autism. I think that would just leave me in this weird limbo.

Hey - sorry to hear you're going through this. I would query what is meant by 'unofficial' by your psychologist and is there a way to make this 'official' by having further evaluation if required? 

For me, autism can feel different depending on the day, what week I've had and where my head is at. I would say there are shared traits between us all, however, can also be quite individual as this is a spectrum. I dont know what 'normal' is .. I'd love someone to define this though :) I reckon a good day for me (or normal) is when I am not paralysed by overwhelm and I can make decisions easily and my stress levels are manageable. 

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. 

Cinnabar_wing said:

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.

Stuart333 said:

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.

sommersunshine said:

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.