Feeling confused and lost after Autism diagnosis

Hi Danny M, 

I agree with the others on this thread, both as a late-diagnosed autistic person myself and as a qualified counsellor, supporting autistic people. One thing I personally would put forward is considering accepting yourself as you are. Danny is autistic=Danny is Danny. You are one unique human being, you have made it to 43 with many successes to list, I am sure..being a parent is one for example. Well done you. There's no denying some things come harder to us but we each have our individual strengths too...

Oh yes, normal.  Grief, sadness, confusion, heartbreak, confusion, frustration ..... and did I mention confusion?
Sadly, at a time when people really need help, the NHS is utterly useless.

I am now having to pay a LOT of money for therapy as I have been unable to get any help from the NHS.

Seeing the replies here seems to suggest that this isn't an abnormal response, and - although this probably isn't terrifically helpful - I can add to that testimony.  It's about 7 months since I received a diagnosis at the age of 47, after the diagnosis of a teenage child a couple of years ago.  The benefit has been that I can better assign understanding to experiences over the decades, problematic behaviours that seem impossible to correct, and the feeling of living a double-life (a masked one that applies to every interaction, and then the one that I experience on my own). 

Trying to find support is tough, I'm fortunate that my church has helped fund counselling for me with an Autism specialist, yet progress is painfully slow.  Although it could be argued that prior to diagnosis life had been coped with, the reason I sought diagnosis was because it was becoming increasingly difficult to do so (hit burnout hard and still feeling like I'm skimming over the surface of it now), so the hope was that having a diagnosis would make a difference.  As I say, it's given understanding and context, but this is only working on a cognitive level and hasn't yet created space or kindness towards myself emotionally yet.  There has been a considerable battle even following diagnosis in actually accepting it.

So far my counsellor has identified a tapestry of ASC related challenges including compulsive behaviours, evidence of  CPTSD, anxiety, depression, imposter syndrome, and insomnia.  He is the only one that I have managed to achieve a degree of unmasking with, and that is both liberating and uncomfortable simultaneously.  All of the above has brought me to a place of opportunity to become more authentic with myself, but it feels really unstable and I naturally want to reject what I'm seeing. Lately, it feels like the mask keeps inadvertently 'slipping' a bit when at work or other social places, and that adds to a sense of insecurity and tension. In similar style to yourself, I also don't want to use the diagnosis as an excuse, and experience resentment towards the autism (I know, de-personalising the autism and not owning it is probably not helpful, working on this).

It is both lonely and frequently almost unbearable.  The things that keep propelling me through this are:
1) The hope that the stuff which I mention above, which have been impacting my life for as long as I can remember - and intensified as a teenager - may come to a point of being compassionately managed and less harmful (if I am truly autistic then they can never be fully resolved).
2) I had come to point where I wasn't coping any more, so there really isn't a way 'back.'

Didn't mean to go on like this, but did want to try and be supportive.  All the best.

I got my diagnosis today and I’m completely with you on this. It wasn’t a surprise as I’d done my homework. I was expecting relief but seeing the word “disorder” in actual typeface has been a bit of a shock. I’m very good at masking and feel as if my shell has been torn away. This makes no sense as I wanted diagnosis to understand myself better and try and make my exhausting life easier. I’m 59 and only twigged I was autistic because my 23year old was newly diagnosed. I’m completely confused.

Did getting the piece of paper make you any different to the day before receiving it?

You have lived and survived for 43 years without the diagnosis.  Yes life has probably been hard, but it is for all of us that are diagnosed later in life.  But you already have your coping mechanisms.  Why change lots of things when it doesn't benefit you?  I have mentioned to a few people now, a diagnosis is a piece of paper, nothing more.  You are still you, if you had challenges on the day before it, you will still have the same challenges the day after it.  It gives you some extra options, mainly in relation to work and gives you a big stick to legally beat employers with when they misbehave.  Besides that, it's a piece of paper that is largely unhelpful and seems to bring many people more anxiety than when they didn't know. ;)

It’s normal to go through a range of emotions while you process it. My first reaction was grief for the life I might have had if I’d been given proper support and coaching as a teenager. Then there’s denial, anger… I’m about 9 months on from a diagnosis at age 52 and I’m still processing it.