Told a few people that I spoke to my GP

Hi, Ethan:

I just wanted to reach out and thank you so much for your message. I read it slowly and carefully and I'll re-read it again tomorrow morning with coffee, savouring every word.

Thanks for sharing your experiences and wisdom!

Elizabeth

Hi Michelle,

I think I've rambled a bit.. but I thought I'd share my thoughts. 

I think some of the online tests are based (or reproductions of) the AQ10 https://www.nice.org.uk/guidance/cg142/resources/autism-spectrum-quotient-aq10-test-143968 which is how I self-screened. I scored enough to get the confidence to have a discussion with my GP and explore options to have work support me with an assessment.

I was really wobbly about attending-  I remember going to a walk in the woods near my house, standing alone on a bridge overlooking a stream wondering what on earth it was, I was doing. I remember thinking that perhaps I was conning everyone (talk about imposter syndrome!!), that whatever it was I was struggling with, it's because I wasn't trying hard enough. I decided then that whatever happened I would "trust the process" - which I think meant I was handing it over for providence / fate / sheer chance / accepting consequences.

Then I decided whichever way it went I could scratch if off my list. If it was - great, access to resources, perspectives and things I hadn't considered before. If not, then I'm no worse off (I'm may not be better off but at least I would know).

When I was diagnosed it was odd - I think I spent some time actually resisting the diagnosis as some of the recommendations didn't make sense. Then the more I read of other people's experiences the more I realised "that's me" - they had the same questions, similar struggles and strategies that started to make sense. I'm still coming to terms with the fact the experience is unique (I had a good laugh with a work colleague of mine that sadly I was rubbish at counting cards and I'm no Dustin Hoffman, but I was very good at making lists for things and getting annoyed at people for not telling me things in advance of meetings!)

I've also had occasions where NT's have told me that "x is the same for them". I think it's a way of trying to connect - the experience may be the same. It's the impact and the processing which is different. A recent conversation about a difficulty at work (both me and my manager had some work we'd been doing kyboshed) highlighted this - my manager was "what is X doing, who do they think they are" - the whole thing was about relationships and social positioning. They took it as someone trying to boost their credibility at our expense. I was approaching the system "why did Y happen, what information did they use? why has it been communicated this way? did they not understand something?". I took it to be a decision based on faulty reasoning. Which is why when my manager had finished ranting she could still make an evening meal and mind the kids and I went into a full blown meltdown that evening for about 10 hours because I was trying to look for information that simply wasn't there and needed half a day to recover (we swapped notes the following day!)

Please stay the course. It's tempting to listen to those around you and allow them to influence your decision- everyone likes to be an expert - or at least think they're reasonably well informed about everything and I include myself in that category. I was told there was nothing wrong with me for years (thanks family!), that I just needed a kick up the backside (extended family), that I needed to trust god more (church), that I shouldn't worry so much and enjoy life (friends, when I used to hang around them), just get on with it (family again), I needed to get some more interests / make more friends - the list goes on. And each and every one of my Job's comforter's was wrong. 

I found the psychologist was right. Because their strategies work. I don't particularly like having a coloured mood chart on my desk that I check-in with just to put a name to whatever it is I'm feeling - but it works. I really don't like to have to build in buffer time between work tasks, or having to have things explained in a way just for me so it's clear and I can get a handle on it (I really wish I was better equipped to follow meetings and lively conversations), or have a list of scripts to eject myself from situations - or even sometimes just to consciously think about what I'm doing and have my phone bleep to remind me to stop and check in with myself because I can get caught up in busyness and chasing ideas like dogs chase cars losing time and focus. I'm learning to accept I have to do these things because to have a better quality of life I have to do these things. 

Whatever "normal" for someone else is I've finally accepted I'll never be that. But now I can allow myself to breathe - I can be my "normal" which is what I'd been fighting against for years. It's not good to be at war against yourself. 

Are you right/wrong? Only the assessment will point in right direction. Whichever way it goes - you'll know something you didn't know before and can move forward. 

Wishing you the very best of luck!

Thank you also Elizabeth. I am glad to be here too, because I feel normal and accepted here. 

Hi again, Michelle:

Everything you said makes total sense. Yes, please trust the professionals as you are assessed - this is what they do and they are there to help you, not to approach you cynically or to apply a pre-determined, 'no Autism' lens to their work with you. If you are utterly candid and honest, and give them as much detail as possible, no matter how small seeming a detail might be, you will help them and you.  You've got this!

For what it's worth, when I answer quizzes/speak to specialists I purposely drop ALL of the covering/masking I've used for two decades in the workforce. I stop hiding what is truly going on inside me, knowing they're not there to judge me and are there to help.

It was a bit scary at first, and felt like suddenly I was an awkward, different from everyone else 14-year-old again. Then, however, it was totally liberating. No need to hide! No need to pretend handwriting doesn't make my hand and brain hurt! No need to pretend I enjoy working with others and love being in meetings! No need to pretend my pets AREN'T my most trusted friends or that I don't totally prefer being home alone for entire, uninterrupted weekends to...basically everything else. :-) 

Letting down my guard also helped me to be super gentle and forgiving toward myself as I remembered (relived/was re-traumatized by) my many, many past social and professional mistakes, when I hadn't yet learned to mask my Autism and 'be like everyone else'. I was able to apply the same love and care I give to others to myself, and just love me for having survived, really. 

Sometimes just getting up in the morning and making coffee and having a shower feels like a day's work. Some Saturdays I only make it to the coffee part of that list before 1 PM, and it can feel like a struggle to get breakfast. And all of that is okay. xoxo

 I'm sending support your way, Michelle...Your journey is an exciting one and it's so great to have you here. :-)

Elizabeth

Thank you. I did that test and got "very likely neurodiverse" so basically the same as other tests I have done. 

I already feel more self aware since my referral for assessment was completed, and it has brought with it a sort of soothing or peace. I'm still anxious but I feel more understanding of myself and it has helped me to be kinder to myself. Where I used to almost berate myself with "why are you feeling anxious over nothing?!" now I feel a sense of personal acceptance and adjustment. 

I'm still frightened that someone else won't see what I see. I'm very well practised in keeping up appearances and I know my friends don't always see my anxieties and lack of confidence. I know I have to trust in the professionals but I'm scared I will be back to square one and have no answers again.

Hi, Michelle: 

I have found that something useful I can do when I want to tell someone I love about my diagnosis is to share with them the visual (computer generated, colourful and detailed graphic) that is generated after a person takes the approximately 120-question online quiz for Asperger syndrome found at the following webpage: 

rdos.net/.../Aspie-quiz.php

I think online quizzes give us quite a useful sense of things, particularly pre-diagnosis. I think that is particularly the case if the quizzes are offered by reputable organizations that aren’t selling anything, such as national Autism non-profit advocacy groups.

For some people in our friend and family circles, or my circle at least, seeing a person’s online Autism quiz results displayed in a visual form can be helpful, and open a conversation. After I took the lengthy quiz and my results related graphic was generated, I took a screenshot of it immediately and saved it to my photos folder on my cellphone. I also emailed the photo to myself. That’s how I was easily able to text or email it to family and friends.

Interestingly, after I took the lengthy quiz mentioned above no fewer than five of my siblings and friends quietly took it themselves, and then shared their (very different from mine) results with me after the fact, grinning and delighted. They were engaged and warm and it was invaluable!

I have taken multiple online tests and they always provide me the same ballpark results. I say, go for it and take as many online tests as you can find. I found it very validating, pre-diagnosis.

Have a great day! 

Elizabeth

That is a worry of mine, that I'll wait a long time for a diagnosis just for people to be dismissive of what I am experiencing. 

Absolutely not true.

its so not true

El said:

“well everyone is a little bit autistic anyway aren’t they”

The response I haven’t enjoyed getting is “well everyone is a little bit autistic anyway aren’t they” - I feel like that just completely makes my diagnosis invalid and purposeless, and that anything I’m going through doesn’t matter because everyone gets it when they definitely don’t!

Ah, I'm pretty sure you're right there as it just wasn't the done thing. My mum was at the other end; she's very affectionate and tries to be supportive but at the moment it's hard as she had a stroke before lockdown (I found her and visiting yesterday was tough as I've never thought of her as old) but her family I think are absolutely littered with people with autism; there's about 4 diagnosed; one of her brothers is so a-typical it's hard to see how he couldn't be and she had one who was a brilliant artist who was an emotional wreck and passed in the 80's but yep, I definitely think that was very common back in the 60s and before.

I guess we need to understand the past to understand their reactions. I learned that not too long ago e.g. 50-60 years, it was very shameful to get cancer. Something you wouldn't say to anyone. So they are most like just children og their time. But hell, it hurts ehn something you see as a gift to know is shameful to your own parent(s). My mother has been ok about it, but I believe that the autism runs in her family and she has very little ability to shown affection. So not much help to get there :)

I think my dad would too; if I hadn't already got fluid on the brain; his whole family don't like to talk about illness....They see it as shameful. Which is ironic as I have deep suspicions that my grandad, who my dad often refers to as selfish and miserable.....and very much a loner, was probably autistic too. My mum has suspected mine for a long time; the only thing that threw her off was my speed at learning to talk.

Yeah, it is amazing how varying responses you can get from letting people know who you really are. 

My dad won't acknowledge it and has let my mom know that he find it to be very shameful and something that has happened to him. So I'm not really talking to him anymore. 

Other than that, the worst reply I get is: "You're still the same". It simple feels like an attempt to close the conversation and force me to uphold the mask I wear for them. No interest in getting to know how I actually am. 

thats so funny 

I got my mum, husband and sister to do the tests. My husband was my main control sample as he is the furthest away from any "traits" I can think of and would be the most offended if I suggested he had any. Needless to say he only scored 7 whereas I scored 43. My mum scored less than me but still over the threshold and my sister was under but not by loads. 

I found it quite a surprise to score as highly as I did but I would think many of the responses could be selected for other reasons, not just autism.

I feel like I keep learning about new things though because I saw someone post about chewing/eating non-food items and as a child I chewed my jumpers, rubbers, pencils, pen lids, blue tack, paper. I still do chew the pen lids and eat lollipop sticks at times. My friend from school still mentions the pencil eating now in our 30s so it was often enough for it to stick in other people's memories. 

I also wet the bed until I was at least 10yrs old, which I believe can also be more common for autistic children.

I plan to write all these things down but I'm still paranoid I'll just look like I "want to be autistic" as my husband says. 

yes they are an indicator and cover some things u may not have thought of

I hear those online tests were originally created to see if you'd be suitable to work in art or maths.....substitute maths with IT and I was in trouble from the start :D

Hi Michelle, I went through very similar experiences when I told people I was going for an assessment. My partner felt similar to start with, but as I sent him more information about women and autism, and explained why an assessment was important to me, he became a lot more understanding - sometimes it takes time and more communication, however painful the conversations can be. Friends have also ignored me when I've told them about the assessment, and even my diagnosis. Some friends have said "oh I just don't see you as autistic so that's surprising", so I have had very few people feel like they have actually supported me through this. However, I am learning to try to understand things from other people's perspectives, and I have accepted now that I don't think people know how to react, and that any response feels like it isn't the right one. I do think that communicating your thoughts, educating people on autism, and explaining to people why you want to find out can really help to get people to understand you.

And on the note of online tests, I also did these prior to my diagnosis, and I think they can help as a guideline, but there is much more to an autism assessment than the generic questions these online tests ask :) 

I'm going to.