Have been diagnosed with Autism Spectrum Disorder later in life .

Hi , I am a 48 year old woman who has just been diagnosed with Autism Spectrum disorder on the 6th August this year after being mis diagnosed with Emotional unstable personality disorder since 2014 . I am very angry about this & am struggling to come to terms with this diagnosis. I am really struggling with Autistic rage & I just wondered if anyone else struggles with this & has some support or advice for me . I'm also feeling very isolated & lonely so I really hope this online support chat helps . Thankyou for reading 

  • Hello. Just for clarity, I assume you are angry about being formerly misdiagnosed, not angry about now being diagnosed with ASD.

    To have a mixture of emotions and struggle to reframe the past, particularly if it has not been easy or there have been mistakes, is normal.

    It takes time to adapt. If you can, try to let it out in controlled bursts. But you might also want to think about what you are angry about, or mourning, or missing, or think would have been different. Then challenge them to make sure they're really true.

    When dysregulated I can get upset about things that are not quite accurate.

    It is also easy to get sucked in. Make sure you are exploring for information and understanding, to make things better and calmer.

    Or are you saying you are now masking less so anger is more obvious and common?

  • I'm also feeling very isolated & lonely so I really hope this online support chat helps

    Unfortunately, it's not uncommon for us to feel lonely and isolated. In addition to hopefully finding this community helpful, you might also find some of the advice in these articles helpful.

    Just as an aside, I appreciate that I’m providing you with a lot of resources here, across my two replies. One of the most important things I would suggest to do in these early stages is to take your time, go at your own pace, and be kind to yourself. You could perhaps bookmark some of these links for future reference, if that would work better for you.

    NAS - Loneliness - includes links to other examples of autistic people's experiences of loneliness and how they cope.

    NAS - Making friends - a guide for autistic adults

    Once you’ve had time to process your diagnosis and your feelings have settled down, you might like to consider asking your GP to refer you to your local social prescriber.

    Their role is to develop a personalised care and support plan that meets your social needs, as well as your practical and emotional needs. This could include helping you to find local groups or socialising activities, for example. The article below explains more (it relates to England, but the same model operates throughout the UK):

    NHS England - Social prescribing

    You might also be able to find some socialising opportunities via the the NAS's directory, or through a local NAS branch:

    NAS - Autism Services Directory

    NAS - Branches

    As a final suggestion, you could search on Facebook and/or Google for any local groups that might fit with your interests and hobbies.

  • Congratulations on your diagnosis and welcome to the community! 

    Following a diagnosis, it can be common for us to experience a lot of emotional dysregulation. Besides perhaps feeling some relief about now having an explanation for our past difficulties, this can also include working through a phase where we experience confusion, uncertainty, so-called "imposter syndrome", and/or (backward-focused) anger, frustration, grieving, and more. So please don't worry - it's normal! 

    As for many others here, my own diagnosis turned out to be much more of the start of a new journey, rather than a conclusion full of instant solutions for my difficulties.

    The NAS has a great set of articles focused on "after diagnosis", including one covering how you might feel during the subsequent days / weeks / months. You might find them of interest and/or helpful:

    NAS - How you might feel after a diagnosis - includes perspectives from other autistics

    NAS - Other advice covering post-diagnosis including:

    • Talking about and disclosing your autism diagnosis
    • Emotional support for family members after a diagnosis
    • Formal support following an autism diagnosis
    • What can I do if formal support is not offered or is not enough

    Therapy (or counselling) is often recommended after a diagnosis, as a follow up action for your GP to arrange. If you prefer, depending on where you are in the UK, you may instead be able to self refer for talking therapy on the NHS.

    Before arranging it, you might find it helpful to borrow or buy this book, which includes discussion of various types of therapy and counselling, together with advice on choosing the right therapist or counsellor - all from an autistic person's viewpoint. Several of us here have found it very helpful:

    The Autistic Survival Guide to Therapy

    I'll just mention a couple of books that I and others have found helpful early on in our post-diagnosis journeys:

    Self-Care for Autistic People: 100+ Ways to Recharge, De-Stress, and Unmask!

    How to Be Autistic (free download currently available via this page)