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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

Parents

  • 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.

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  • 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.

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