34, diagnosed yesterday, hello!

Hello,

I'm generally nervous about posting on forums and replying so I thought I'd throw myself in.

13 years ago, whilst having an awful time studying to become a teacher on a PGCE course, I read about ASD and realised that I had it. I took lots of online tests and was shocked to score so highly but never felt able to join in with the autistic community as I wasn't diagnosed and was too scared to seek a diagnosis.

Recently, we have been in a better position financially so my husband agreed we could invest in a private assessment (waiting lists are 2 years here). I was incredibly nervous beforehand but the two psychologists were lovely. The assessment was yesterday. It was exhausting so I've been in bed all day today, but finally having a diagnosis feels very good.

I have told a few people but I'm feeling anxious about sharing my diagnosis with some people as I fear a negative reaction. Either "don't be ridiculous" or "that's why you're such a ****". I'd be really interested to hear how people have shared their diagnosis and what the reactions were.

The worst I have had so far was "It's a good job you weren't diagnosed as a child as you would have been written off as disabled". My twitter friends on the other hand have either said "I hope they can help you now" (as in, you have a problem that must be fixed") or "Congratulations, now you can be you".

Thanks for reading 

  • Thank you! It seems lovely so far! 

  • Hello and welcome to the community!

  • GM here too. 

    I've only ever skyped my husband when he's been away and I had to turn it off as I got so distressed by the time lag and the picture going off!

    Thank you. I suspect the next few weeks I might have lots of realisations. I'm hoping to one day reach a point where I don't think I'm rubbish at everything. Might take a while though!

  • I think you need a friend request first for private messages. Unfortunately I can't work out how to do it, there don't seem to be any links anywhere to request. I'm based in the North West too, in Greater Manchester. I will check out Spectrum North West.

    I don't know if I'd like to use Skype.  I struggle talking to one of my closest friends on it never mind a stranger doing a formal assessment. 

    All the best with understanding yourself and recent diagnosis. 

  • Anything I'm interested in, I'm always REALLY interested in and need to find every available bit of information!

    It looks like you can't do private messages on here annoyingly. I used Spectrum North West, mostly because they were able to do home visits. A lot of people pay for the initial assessment then use that to show the GP. My friend went through a Skype service where the whole assessment is done on Skype. Much cheaper than mine but still recommended by the NHS. I hate Skype so couldn't face doing it that way.

    Hope you find the right choice for you. 

  • You're right that people see it as a disability or problem but I think that's because there isn't enough awareness of it. You must be brave if you've always been scared of getting a diagnosis but took the plunge anyway. It's interesting when you say about your online friend, because I think that's how people on the spectrum can often relate to others.  I don't know anyone in real life I could share it with as they are either not on the spectrum and/or don't know enough about it. So a lot of the time it's all up there in my head swimming around.

    I've really enjoyed researching it. It's like I've not been able to get enough of it although I hide any books I've purchased. Maybe I should leave them lyingaround as a talking point if my parents come round?! Im wondering if it has been a specisl interest although it has petered out slightly as a lot of stuff about women seems like it's repeated. This forum has been valuable for opinions of people with and without diagnosis (thank you all), but Im sure now you can dive in and take part safe in the knowledge you are officially on the spectrum! 

    Which area of the UK did you get your private assessment? The initial assessment sounds like something I need

  • Hi, thanks for posting. 

    What you said about sharing traits with friends is very familiar. I had 13 years of being fairly sure I had AS but whenever I suggested it to other people they would say "lots of people do that" and it was very invalidating. I never had a good enough relationship with my bosses to share it with them so I'm glad you had a positive experience there.

    As you say, you often hear people talk about autism as a problem or disability so it makes it very hard to talk about. When my cousin was diagnosed a few years ago the family were so horrible about it.

    For me, the trigger for getting diagnosed was partly that my sensory issues were getting really bad, and partly because an online friend got a diagnosis and seemed so happy. I looked into the NHS route, tried to get an appt with the GP and couldn't even manage that as you had to phone on the day then wait for a call back. So then I looked into private options and as my husband is a psychologist he was able to verify that it was all above board. It cost a lot of money but luckily we're very frugal so have savings.

    I was always scared of a diagnosis but I suppose even if/when you get one you only have to share it with people you choose to share it with. At the centre I used, you can pay a smaller amount of money for an initial assessment where they say if it's likely you are on the spectrum. That might be an option if you're unsure.

    For me though I always felt so uncomfortable researching it before I was diagnosed. I'm very rule-based, so when I see a forum for people with autism I feel like I'm breaking the rules being on it, if that makes sense.

  • Hi Fraiselongue, it's been interesting to read your post and the threads. The people on this forum are incredibly supportive and offer different viewpoints and opinions which is always useful. I'm female 34 who is self-recognised.  Ive been "aware" for almost three years.

    I've "come out" to my manager that I identify with many traits in the spectrum, she was very supportive. I can't bring myself to speak to my parents about it. They're old school and when Chris Packham was on TV the other week my mum being my mum said "what's that thing that he's got wrong with him?!" I tried to educate her a bit but it went in one ear and out the other.

    I braved it with a close friend last week and we did have a really good conversation and laughed a lot but i felt like I had to constsntly justify each reason why I thought I was AS as he said "oh well I do that too". I also found itdifficult to verbalise everything in my head. 

    Do you feel validated now you have your diagnosis? After the conversation with my friend I'm leaning more to seeing my GP about it properly (I have mental health problems alongside). What made you seek diagnosis? I feel like it would give me closure one way or another and that i couldnt really tell anyone else without this proper backup. (That's assuming postive diagnosis obviously) But I don't like labels and not sure if I want one as I've got this far in life already.

    I think if i got a diagnosis i guess also there are some people who woukdnt really need to know so I wouldn't tell them. 

  • Grin It's funny because when I was a kid I didn't understand children, yet now they're so much easier to talk to! I'm very lucky to have my daughter. Having her with me gives me confidence to do so many things that I can't manage on my own, e.g. go to the cinema, go shopping. It really helps having someone else to focus on.

    The unspoken awkwardness is definitely worse than just politely asking!

  • Maybe that's what I need - a perceptive 8-year old companion to bolster my social awareness! Laughing

    I don't have any kids of my own, but I've always loved their unfiltered honesty. Quite a few of my friends' children have quite openly and without any prejudice started talking to me about why I do things a bit strangely sometimes. I often find it very amusing to watch their parents get really flustered when their child is merely curious about something which the parents have studiously avoided mentioning for years - payback by proxy for all those funny looks I've gotten over the years which no-one would explain the reason for!

  • I hate it when people say that - if you suspect you're autistic, there's normally a good reason! I've even told someone I suspect I'm autistic and they just said, "No, you're not." Very frustrating.

    Thank you - it's good to know you found it worthwhile.

  • Hi!

    Over the years I have mentioned to some people that I suspected I had autism and they always said I was being a hypochondriac or being dramatic. Eventually I just gave up trying to explain. It's really nice to know for sure and have medical evidence to back it up.

    I hope your assessment comes soon. It was very intense and at times hard to keep talking about all the things I find difficult but it was well worth it.

  • Definitely! I heard just this week that a staff member at my daughter's school said "we're all on the spectrum". Trying to get across the level of anxiety I experience is just impossible so often I get cut out of people's lives because they don't believe it and assume I just don't want to spend time with them.

    I'm lucky to have a husband and daughter and a few friends so it makes it easier to let go of those people who can't or won't understand.

  • Hi Gii,

    Thanks for the reply. It's crazy how many people our age and older have lived their whole lives without a diagnosis. Looking back it was so obvious when I was younger but I went to quite a rough school so had to learn to mask well. 

    It sounds like you're doing pretty well in life and I'm glad your daughter also has a diagnosis. She can hopefully avoid that feeling of being defective that I always had.

  • Thank you so much for the reply. I suspect I shall have to get tough skin if I want to share with some people so it might be easier not to. Funnily enough, my 8yo daughter said "best not to tell X as she's always mean about people who are different". X being a member of my close family. 

  • Hi, Amy. Welcome to the group Slight smile I was really nervous the first time I posted here too, but it's a lovely group and people are really supportive. I'm awaiting my assessment and I find it really difficult not being able to share that I might be autistic. I don't feel I can tell people about the challenges I have (e.g. when I'm getting overwhelmed at work).

    Congratulations on getting the answers you were looking for. Take it one step at a time now that you have your diagnosis - just let it sink in and tell people when you feel confident to do so.

  • People can suck. A lot of people's experience of autism is characters from tv or films. They don't get it. They don't understand it or they try and tell you that everyone is a bit autistic , "everyone does that" , "yes my anxiety was high today too". It can really make you cross. It's so hard to negotiate around Neuro typical people as they just don't get it. 

  • so true so true

  • you're doing a great job :)

  • Hi Amy,

    I am the same age as you and got my diagnosis last week.  I’m an occupational therapist and working on a masters in sensory processing.  I think my interest in autism and sensory problems has been driven by my hidden difficulties which I’m beginning to understand a lot better.  Funny how life goes full circle, having an interest in a topic which begins to answer long pondered question about yourself.  I too have only told close family so far, some good reactions and some rubbish.  I’m happy that I know a bit more about myself.  Spent a long time masking.  My eldest daughter got her diagnosis a few months ago so its nice we are in the same boat.  I could see a lot of myself in her at that age but she sure seems much happier because she doesn’t have to be someone else i think and her friends are supportive.