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Wishing we never got a diagnosis

MuhWuh

OK... I admit it... the title was designed to catch your attention. I really don't regret the diagnosis. But I do wish I had been warned about the challenges that have followed.

Last summer, after a 2 year battle with cancer, I lost my wife and mum to our gorgeous two girls, aged 13 and 15. Six months later my eldest asked, "What do you know about autism, 'cos I think I tick a lot of the boxes?". Well, to be honest, both my wife and I have a lot of experience with children having worked or volunteered with them for decades and we knew that she was 'a little bit spectrumy' as, indeed, am I. But it never seemed to get in the way so we left it alone.

Now, however, was clearly the time to investigate and get the diagnosis... Attention ADHD and ASD. And WOW is she an Olympic standard camoflager! She fooled us big time into thinking she was 'slightly' autistic.

Great, I thought, a diagnosis... we put a few strategies in place to support where needed and crack on with life. OH NO! Six months on and she hasn't been able to attend school. She has psychotherapy twice a week and has now been diagnosed with 'severe depression'. What the hell happened? All that changed was a diagnosis. Why has everything fallen apart? And... the million dollar question... how long will this take?

I know we can't put a time on it... but given that the depression now requires a psychiatrist's input and I can't find one taking new cases EVEN PRIVATELY I am starting to frey at the edges. The normally cheerful, upbeat and supporter of others in crisis is starting to wonder how much longer I can keep skipping around the house ensuring that smiles abound.

Is this normal? Any hints and tips? Maybe even 'the answer'?!

Thanks for reading... and please... don't let this stop you from getting a diagnosis!! It really is the best thing!

MuhWuh

xxx

  • MuhWuh said:
    And WOW is she an Olympic standard camoflager! She fooled us big time into thinking she was 'slightly' autistic.

    Hey MuhWuh, You have my respect and sympathy for handling the last few years.  Well done.

    Your situation is well outside my wheelhouse, but I do have a comment to make about your statement that I have quoted above.

    I believe that "Olympic standard camouflagers" who have not yet realised their ASD status have a traumatising shock when they are made aware.  They didn't know they were camouflaging at all, and now they are told that they are "Olympic Standard" at it.  There is a sudden realisation that, to some extent, your whole life has been a lie, told to yourself, by yourself.  I found it quite scary.

    Coming to terms with "fooling other people" is one thing, and does make you reflect back on your life history.

    Coming to terms with "fooling yourself" is not talked about as much - but I think is FAR MORE profound - and also makes you reflect back, and analyse your life history.

    Your families recent life history is one of upheaval, to say the least.

    I think your daughter is enduring a very tough period.

    I am an "Olympic standard camouflager."  I send her my very best wishes.

    It is wholly reasonable to foresee that your daughter would dump multiple NT behaviours - they are not essential, and her brain needs all its energy to try and process the things that it finds itself with......or as you put it "everything falling apart" - perhaps in an NT sense.

    You are looking at your daughters current behaviours through the standard NT lens that most of us understand, but that many on these pages choose not to apply.  I, for one, look at your daughters situation through what I consider to be a more appropriate lens - lets call it the WTAF IS HAPPENING lens.  Through that, I perceive any type of behaviour that keeps her safe, sane, soothed and supported to be completely normal and wholly acceptable.  If she was acting NT normal at the moment, THEN I'd be worried about her welfare.

    Continue to love each other and hopefully enjoy a  talk and cuddle some times.  I hope you have support too sir.

    All my best.

  • Luftmentsch said:
    Just try to make sure your daughter knows that she is loved

    oh yes, it's as hard to convince us that something is true as to it's false. So, never ever joke about loving her, it would put all your previous efforts in question.

    Since my granpa died when I was 11y.o. I did not have anyone to rely on, anyone I could trust until I was 29 y.o. and met my first ever friend

  • I was diagnosed on the spectrum last year. It was not at all unexpected. I had been trying to get it for years. Yet eighteen months on, I still don't think I've fully come to terms with it. It's more than "just" a diagnosis, it's changed how I think of myself and my life history to this point. And that was without a major family bereavement too. Your daughter's emotional and practical life at home must have changed enormously over the last year. It could be that the diagnosis was the straw that broke the camel's back and this is really about losing her mother, or it could be that she is really struggling with the assessment (or both). I honestly don't think it's surprising.

    Also, dealing with someone with depression: trying to ensure "smiles abound" with someone who is clinically depressed because of major life changes is probably not going to work and may even be counter-productive. Just try to make sure your daughter knows that she is loved and that she can rely on you to be there for her no matter what, even if she feels in the depths of despair.

  • I reckon it would happen anyway without being diagnosed, shock of losing mom and prossibly a new strressor at school tipped the balance, she is old enough to start thinking about boys, maybe first ever rejection?