Post-diagnosis support: The real and the invisible.

I’m feeling a bit unsupported.

I don’t think that’s anyone’s fault as such. Certainly no one I can point at, it’s more of a vague fist-shake in a general direction.

Funding is always at fault though, so the lack of government funding has directly affected my journey.

We can start that at the 18 month wait between GP referral and first appointment with a specialist. It was another couple of months after that before I was told that I had Autism Spectrum Disorder. Two months after that, in the midst of self-doubt, I chased up a confirmation of diagnosis, which I received within 48 hours by email and post with apologies.

It’s now five months since diagnosis and I’m thumb twiddling.

Should I blame them? I can blame politicians for not enough staff.

But what use is all that?

The past five months I have found enormous and real support from a group of strangers online.

Some I feel warmth towards. Some I don’t feel I have much in common with. But with each anonymous post of, “I do that too!” comes a kind of acceptance that I’ve never known before.

The way we talk on our thread is not the way I talk elsewhere on the Internet. There’s no real dialogue. We respond to each other’s questions, but reading through is almost like reading a list of separate statements. We are a tangential bunch. There is little small talk. It’s refreshing.

At the same time it’s scary. Even in this small group of newly diagnosed, adult women, we struggle with the rules of not having to follow the rules. We apologise for not posting for a while. We all seem to be intermittent posters, going through periods of intense engagement, and then times of stepping back. We still feel guilt for stepping back.

So there has been support there.

And it’s been needed.

In the early days after diagnosis I was elated. Excited. Full of adrenaline. I felt acceptance. I felt sane. I felt like a real person for the first time ever. All my exhaustion was validated. It was amazing.

Then time wore on and I worried. I worried I must have tricked them somehow, that I couldn’t be so different. I quizzed my NT (neurotypical: someone who has normal social processing) husband about all my thoughts. I’d say, “when I do this, is it a normal thing? Would you do it?”

And he reassured me. He told me he couldn’t say what was and wasn’t, but he could tell me that he’d read about autism, and it fitted.

I don’t know what I would have done without him as I argued against myself.

Then there was the realisation that I would never get “better”. I already have myriad coping techniques in place, a veritable cornucopia of survival methods for all sorts of places and things. But they exhaust me. They will always exhaust me. I will always have to take that into account, and I don’t want to.

That was the low part. I had a few weeks of feeling very low. I didn’t seek help. I didn’t ask for help. It was hard. It was winter. It rained a lot. It was bleak.

Then Spring sprung and I started to improve a bit. And now here I am. I have told some friends, but not all. I have very recently told close family, and they’ve surprised me with how accepting they’ve all been. I keep telling people I haven’t changed. They’re safe, I’m still me.

What would have made the difference?

Someone to help me. Someone to advise me on telling people. Someone to help me deal with the angst I felt as I swung between never telling anyone, and wanting to tell the world, then backing out again and again. Someone to help me deal with the conflicting emotions of discovering and accepting that I have a disability. Someone to help me understand that it does disable me as well as enrich me.

I need to know the good and the bad. I needed to know the reality. I want a dentist to tell me, “This is going to hurt a lot.” That to me is a good dentist. I don’t like minimising.

 

Not that the people who diagnosed minimised. They were honest. They were clear that emotionally knowing could be good and bad. In fact they were the first people ever to

My life is enormously fulfilling, but I needed to accept that I can’t do some things. It’s not easy to accept that. It’s not comfortable either. I’m fiercely independent and don’t want to ever ask for help, but it’s a part of the journey too.

Having an expert around to support me would have helped.

There are still more things that I need help with. I would like to create a fulfilling work life. I need help with that, and that help needs to be specialised.

I need to find people like me in the community. I don’t know where they are or how to find them. I want a network. I want to be useful.

I’m not in a big city. I’m not near one either. Living rurally is perfect for me, but it means resources are scarce. It means those networks are missing.

Every once in a while I’ll search online and come up with a phone number for someone co-ordinating something. And I look at it, and I know I won’t phone. It almost seems like a sick joke. Why would you provide phone numbers and not websites and email for a group notoriously phone-avoidant? I’d laugh if it wasn’t such a ridiculous barrier.

Maybe the time will come when I feel together enough to start working on those things. But I’m still floundering a bit.

I blame myself for not reaching out, but I was told there would be another meeting post-diagnosis, and it’s yet to happen.

So I’ll do the thing I do. I’ll be very British and just wait patiently. Hoping that what people say will happen, will happen. Because that’s how I work, and deep down I’ll worry that it’s one more way that I don’t understand everyone else and the world is passing me by.

11 thoughts on “Post-diagnosis support: The real and the invisible.

  1. I’m sorry to say that be a “good girl” and wait will probably not do… At least not here, here you have to act if things will happen. It dosen’t matter if you are up to it or not šŸ˜”
    Have you read about pacing? It has helpt me handle the buzz in my head and the system overload that happens every time I’ve been in town etc. It may very well not be what you need since we don’t get for the same reason but it might help. I hope that you find the support and the network you need because we all need to have back up. And feel usefull in a workplace or like. Good thing you have support at home thou šŸ˜Š

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    1. Thanks Laila. Deep down I know I’m being an idiot, that it won’t come to me. I’ll start chasing at some point.

      I hadn’t heard of pacing, thanks for suggesting it. I’ll have a look!

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  2. I’m not sure it’s even a funding thing. There’s never been statutory support for able verbal autistic adults (there’s barely anything for children). There was nothing to cut as it never existed! I feel we must make our own services and create our own support, we are the experts after all.

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  3. I hope you can find that professional network that you desire. I’ve recently begun working with a few local career resource networks that specialize with those on the spectrum, and I think that it will help. I just have to be patient.

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  4. Or maybe, being patience is a problem… It seems like if you don’t scream high enuff you never get anything in this world. I’m not good at screaming or “being difficult” but when waiting don’t get me anywhere I started to demand help. And boy, I got it! In less then sixmonth I got more help than I had had for more than 15 years before!!! Fibro isn’t prio one in budgets either…

    Liked by 1 person

  5. I believe you’re in a different country, so please ignore if nor relevant; in the US we have Vocational Rehabilitation, to help adults with skills, accommodations, etc to be successful in the workplace. Maybe you have something like that in your community?

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  6. I have been diagnosed for 5 years and I still don’t have any support. All those weird feelings you are having post diagnosis – I still have them too. Just this morning on the train I was thinking about my diagnosis and panicking that the psychologist I’d seen had made a mistake. But other days I feel angry and frustrated that I’m still having to perform normal so much of the time. And sadness and anger that I’ve performed normal all my life and I wonder what I could have done in my life if we’d known I was autistic as a child. How would it have been NOT to grow up thinking I was mad? Or just annoying/naughty/over sensitive/odd/weird and all the other descriptors we’ve probably all shared? After 5 years of support-free post diagnosis I’m starting to think it’s time to take matters in hand and demand. Demand help, demand accommodation, demand the right to live autistic rather than perform normal (of course then the poor executive functioning kicks in and I just go back to bed!)

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    1. Susan, I think many of us share those thoughts. The dangerous “what ifs” of how life could have been. I do think it’s important to grieve in a way. But we also need to find a way to move on, and that’s where support could help.

      Yesterday I decided to contact people. And they’ve responded and responded positively. Sometimes we get caught in what we should be doing, instead of what we need to be doing.

      Sometimes it’s ok to be selfish. Not always, not forever, just when it matters.

      I’m glad I wrote this, because I think it helped me see that no one is going to do this for me. Yes it’s more work. Yes I have no energy to spare. But what else can we do?

      Don’t let the doubt win. You know who you are. You’re you. That’s a great person to be. Thank you so much for reaching out.

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