Feeling a bit lost

When I first joined the forum I felt like I'd finally found people who understand me and my life experience, but this past week or so I've been worrying more about the possibility that I am NOT autistic and what that will actually mean for me moving forward. 

My friend's son was assessed recently and she messaged me yesterday to say the outcome was that he isnt autistic but has traits. I'm struggling to imagine how I would feel/cope with a similar outcome. I already feel like I struggle to function in groups but to find a group that I now feel fits with me and have that pulled away again (potentially) is quite scary. 

I'm conscious of the fact that I'm about to make a career change and that might be contributing to my insecurity. I'm hopefully being assessed soon (the autism team told me April or May hopefully) so I shouldn't have too much longer to wait. I'm just also conscious that some people have reacted in the "you don't look/seem autistic" way and despite me knowing that this is often a misconception others have about what autism looks like, I also can't help but wonder whether I'm WANTING to be autistic and therefore have an understanding of my way of thinking. I've lived a long time trying to explain "my anxiety" and feeling stupid for it, but autism makes it seem less stupid to me. Maybe because to me it makes sense? I know autism still has as much if not even more stigma than anxiety disorder.

Thoughts appreciated. As you can see my account is back online too Slight smile

  • Welcome back.

    My advice is, be selfish and look after number one.

    If you're are having problems with interacting with people, defend yourself by revealing that you're autistic.

    Otherwise don't mention autism because it may cause a negative reaction towards you.

  • Hi Great to see your account is back - I meant to say to you before, but I've just been snowed under, the same thing happened to my account last year. Glad it is all sorted.

    Hang in there! Just hang in there till your assessment and I just know you will be okay. Keep posting - I think your posts are great and it's really good you are back.

  • Dear Hookaduckduck,

    Uncertainty can definitely cause insecurity and I hope your assessment comes soon. And when it comes, try to go into it without a pre-determined outcome in mind. It will be more beneficial to you, and you are more likely to receive the support you need if you go into it with honesty, curiosity and are not attached or invested in a desired outcome.

    Envisage your life with and without a diagnosis. And always keep in mind that you are not a diagnosis. You may or may not be autistic, but you can never ever be defined by it. 
    Other people.

    They have their opinions. They love their opinions. And they love sharing their opinions with us - whether we asked for them or not. The best solution for avoiding their opinions is to only share information about your assessment/experiences with them if absolutely necassary. If you have no choice but to involve them, and you receive the kind of reactions you describe, then take them with the proverbial pinch of salt.

    In the past, I've responded to them with: "Wow. You're amazing. You can actually diagnose someone by looking at them! Have you considered setting up a private practice? You could make a fortune!"

    When you reflect their comments back at them, they usually realise how ridiculous they are.  And if they don't, then you've learned a valuable lesson about them and might want to assess the worth of the contribution they make to your life and well-being. 

    There is only one way of knowing whether you have Autism or not and that is to go through an Assessment. After an assessment, you can agree or disagree with the outcome, but no matter what your opinion is of the decision: it's the only tangible and objective evidence you have either way.  As I mentioned earlier, it's more beneficial to go into the assessment with honesty, curiosity and an open mind. If you go into it with your diagnosis and/or attached or invested in a particular outcome, then you have to be prepared for the pain of having your own diagnosis and desires rejected.

    It's certainly true that there are those who want to be autistic. Just as there are those who want to be something other than they are. Usually, they have already self-diagnosed as autistic long before they go for an assessment and are only using the process as a way of officially confirming their own diagnosis. Only you can know what is your own motivation.

    I know of one such individual who was terribly disappointed with the negative outcome of her assessment, and still refuses to acknowledge its validity. She is already a very depressed person who enjoys ill-health, and revels in the sympathy and attention (not to mention the potential of extra financial benefits) she receives from being vulnerable. Needless to say, it was a huge blow to her plans when she was unable to officially add autism to her list of disabilities and disorders.

    On the other hand, there are many genuine people like yourself who are desperate to find an answer to their inexplicable and debilitating anxiety. Please, do not feel stupid for this. It is a natural reaction and is completely understandable to want an explanation (and justification) for what is happening to you.

    It's perfectly natural for us to identify a condition because of how it aligns with the way we are feeling and our experiences in the hope that a diagnosis will provide us with the certainty we are so desperately seeking. Again, please, do not feel that this is wrong. It is perfectly natural and completely understandable. 

    Lastly, only good things can come from choosing to live as if you already had a positive diagnosis and making the necessary changes to your environment to suit your needs. Whether you are or whether you are not autistic doesn't matter. If making adjustments to your life based on an assumed diagnosis of autism makes you happier and makes your life easier, then that's wonderful, and what anybody else thinks/does/says in response has no significance whatsoever.

    Positive vibrations to you.

  • Thank you for taking the time to write such a lengthy response. I think people who want a diagnosis of any nature to strengthen a benefits claim really don't help matters. Fortunately I think I fall into the category of people being shocked because I don't seem to have any sort of issue, anxiety, autism or otherwise, rather than because they disagree and think I just want some sort of gain. I've not told most people I'm going through this process, just close friends, family and my supervisor at work. I've declared it to my new employer too. I'm perhaps naively confident about the work disclosures because of the nature of my work being a social worker, but I'm not worried TOO much about being discriminated against at this point. I suppose when I have the right work/life balance and support to understand what is expected of me then I am "high functioning" from a performance point of view (maybe not the accompanying anxiety). 

    After I posted my initial post today I sent a message to the assessment team querying when my assessment will be and they've told me it is now MONDAY if I want it to be! Slight panic ensued after expecting them to say they still don't know. I'm finishing my current job on Wednesday, getting my 2nd covid vaccination on Tuesday and life is returning to what some people call more normal on Monday. I'm feeling like lots of changes are all coming at the same time. They aren't even bad changes necessarily but it is a lot to still process... 

  • My son had a diagnosis of a few autistic traits ,2 weeks later i had to collect him from school where he had barricaded himself in a corner of the class-room using  all the desks ,he didn't recognise me or his mum ,i had to carry him and physically hold him in the car while he was trying to hit and bite me .When we got back home he ran to his room and 5 minutes later came out ,shocked but back to his old self .he was 5 years old .There is a lot of pressure not to diagnose children as the councils have to provide funding to help .

    He has adhd and aspergers .

    Introducing autistic impostor syndrome | Embrace ASD  i found very interesting 

  • I was never myself for a long time.  I tried to be NT or just not me.  I've been different all my life, but as others have mentioned being different isnt always good.  School wasnt fun (not that it ever is).  I went through my twenties bouncing in and out of the court system and even now I couldnt tell you why I did half the things I did.  I read a year or so back that people with ASD have a much higher chance of spending time in prison.  I never made it that far, but I did push it to the brink a couple of times.  So until maybe 2 years back I acted like someone else.  i basically wrote a complex back story for a person that didnt exist and assumed that identity for the best part of 20 years.  Then I went to my doctor and asked for a referral and went through the process. 

    I still havent fully broken out of the fantasy identity, mainly because I lived it for so long.  But I now maybe 80-90% accept that I am an aspie and that I can be myself and people arent going to go out of there way anymore to attack me for who i am.  Well not anymore.  In school and through to my early forties it was different.

    You know you.  If you think you have ASD, you probably do.  If you take the online 40 question ASD test and the results say you more than likely have ASD, then that is a good indicator of things.  I took that test maybe 4 or 5 times over 10 years and constantly got a high score.

    I hope you find the answers you are looking for.

  • Hi i doubted myself before assessment. I was nearly cancelling it.Just go for it at least then you'll have an answer one way or another. If it's not autism hopefully they will explain why. That still should give you some answers. Autism made more sense to me than to anyone else I'd discussed it with. That is still the case even now when I tell people after my diagnosis. I think that's because it's still very much misunderstood.

    My CBT therapist said a lot of anxiety traits overlap with autism. Fair rnough but this didnt account for other difficulties I had too such as with sensory or executive function and alexithymia which are common in people on the spectrum (but not exclusive to). I don't think anyone genuine really *wants* to be autistic as there is still a stigma attached. It might be more that you're wanting some sort of explanation which hopefully you will get. 

    Approach with an open mind like another post said. 

  • Hi Hookaduck ( Michelle? )

    No, you are not wanting to have autism, you are wanting to have an answer. If the answer is autism, then you are in the right place here. And if it isn't autism... well, deal with that if it happens. Don't look for future anxieties, that's called catastrophising and it's pointless, as I well know - I could have won an award for some of my past episodes.

    Just go along and be honest, lay yourself bare on the table (so to speak).

    I think Michael has given you a fantastic reply, especially in his final paragraph.

    Hope all goes well.


  • Yes, Michelle. 

    I think following that advice already and making adjustments is potentially why I'm feeling more like a fraud. The restrictions the pandemic has brought us and a bit more self-awareness on my part has really helped me to reduce my anxiety. I know it is still there because if I have to do something unusual - today I needed to deal with my washing machine delivery for example as my husband couldn't do it - then I get immediately anxious. Fortunately he knew what time it was coming which helped, otherwise I'd have struggled to focus on my work because I'd have kept wondering if I was about to be disrupted. 

    I am a terrible catastrophising thinker. I second guess what everyone is thinking and jump to always the most negative conclusions. I'm going to make a conscious effort to NOT over prepare for the assessment so I cant convince myself that I have learned responses to the questions. I know I wouldn't be the first person to do this. 

  • You'll be fine.

    Just go there and take it a step at a time..  Also remember if its a yes your life doesnt just turn on its head overnight.  You will still be you after the diagnosis.  Its not a quick fix or the end of the process.  Its the start of a new journey.  it also affords you some nice new protections that can be applied to your work if you need the use of them.  From reading your posts you seem pretty high functioning, so just go with flow.

    If the diagnosis is no, then you have an answer as well.  But most people that go through the process dont get a no.  They might get a maybe, but in my opinion if you are asking for the help, you probably have a good reason to do so.