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diagnosis

NAS78944

more or less 2 months since my late diagnosis.  is it wrong to wonder why i bothered, yes now i have a formal diagnosis but  has it has changed much.  im still struggling to manage, still not getting the support i need and still feeling like im on the wrong planet.  i dont know what i expected if anything but i guess i was hoping things would feel easier.  knowing im autistic doesnt change the world around me and how i struggle with it and its making me feel low.   anyone else felt the same after late diagnosis

Parents

  • It's not wrong at all.  There are as many responses to a diagnosis as there are Autistic people who've had one.  And how you feel about it might change over time as you processes its meaning to you.  None of this is "wrong".  All of it is right for you at any point in time.

    Personally I was delighted.  But then it came after some rather damaging misdiagnoses.  Oh, I'm just Autistic then, thank God for that!

    But you are right, the world is still the world and it doesn't fix whatever it was we were struggling with.  There's not a huge amount out there to help, but there is slightly more than absolutely nothing.  It might help to make a list of the priority problems you'd like to address and then see what might be available locally.  Sometimes there are little things - my big issue is in medical environments - I do now have a medical 'passport' and more understanding from my GP, for instance.  My sensory system is never going to change, but this does help get through some appointments.  

    Whatever goes on your list, it might help to find a local support group.  In our area CASS ran online and in person groups for people who were newly diagnosed or awaiting a diagnosis. The conversation was mostly about processing the diagnosis and brain storming solutions to all kinds of areas of struggle from making friends to using public transport or finding quiet times at the local swimming pool. Perhaps your GP's surgery might be able to point you in the right direction.

Reply

  • It's not wrong at all.  There are as many responses to a diagnosis as there are Autistic people who've had one.  And how you feel about it might change over time as you processes its meaning to you.  None of this is "wrong".  All of it is right for you at any point in time.

    Personally I was delighted.  But then it came after some rather damaging misdiagnoses.  Oh, I'm just Autistic then, thank God for that!

    But you are right, the world is still the world and it doesn't fix whatever it was we were struggling with.  There's not a huge amount out there to help, but there is slightly more than absolutely nothing.  It might help to make a list of the priority problems you'd like to address and then see what might be available locally.  Sometimes there are little things - my big issue is in medical environments - I do now have a medical 'passport' and more understanding from my GP, for instance.  My sensory system is never going to change, but this does help get through some appointments.  

    Whatever goes on your list, it might help to find a local support group.  In our area CASS ran online and in person groups for people who were newly diagnosed or awaiting a diagnosis. The conversation was mostly about processing the diagnosis and brain storming solutions to all kinds of areas of struggle from making friends to using public transport or finding quiet times at the local swimming pool. Perhaps your GP's surgery might be able to point you in the right direction.

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