No help since diagnosis

I was diagnosed at 50 and given no help, I've still not found any 13 years later.

I think I deal with masking a bit better because I've done ir conciously for most of my life, like everyone else I do so as I can pass as an NT or in NT society. Now I find myself looking for an appropriate mask for the situation, the feelings behind what I'm saying are real, the mask just helps me to say it better and use the right body language etc, or mostly, I still get it very wrong sometimes. When I'm done I conciously remove the mask and put it away in a mental cupboard and go back to being the person I am behind my eyes, when I'm not being looked at, if that makes sense?

If you are not sure what is stressing you because you have ignored it for so long, you need to pay attention to your body.

If you notice you shoulders are raised, this is a sign of stress (I've never been able to have a massage as it hurts my shoulders). Squinting for no reason is too.

You heart going faster or beating harder than normal is a sign, as is excess sweating or feeling hot, or clammy hands. And that knot in your chest behind your sternum.

Bloating can also be a sign as stress slows your digestion.

Bring irritable or snappy when pushed, more than you would want to do, shows it too.

When stressed it gets harder to reason and think logically as your fight, flight, fawn, freeze instincts kick in. When I was super stressed I drove into car park, there were 10 spaces and I could not choose one. I just stopped and sat here for 30 seconds looking.

You can't take criticism, even well intentioned comments. You might notice your hearing becomes more sensitive, or your  tinnitus gets louder (if you have it). 

You may also start scanning for risk. In a supermarket I have in the past started looking over my shoulders, when no one is there. It is quite unnerving.

In general anything that makes you feel more tired than it should, or wired afterwards, is stressing you.

Clarkie said:

I do not know where the mask ends and I start. I've tried to work out who I am since the diagnoses and all that's appeared is more confusion.

Hi and welcome to the community, I'm female, in my sixties and discovered I was on the spectrum almost 10 years ago. I completely understand, and it took me quite a while to find and accept my authentic self.

So I'll make a few suggestions and hopefully that might point you in the right direction.

When we mask, we do something that isn't natural to us, so it won't feel "quite right". If you think about everything you do, you might start identifying things that you would really be happier not doing, or ways of behaving that make you feel a bit uncomfortable but you do it to please others. It sometimes needs a lot of self analysis, as after masking for years we can be unaware of how things are making us stressed and find it difficult to identify our feelings.

You could get a notebook or spreadsheet and start making notes of different situations you are in regularly, what you want to change to make your life easier and happier, and how you could do it.

For example, if you are working, one heading would be "work". Then one sub heading could be "dealing with colleagues" and under that you list what makes you feel awkward, what sensory issues you experience that are unpleasant, what you do that is pleasing others rather than pleasing you, etc. Then you list what you could change such as "politely decline social invitations" , "Ask management if it is possible to move to a quieter work area" or "remember to ask for clarification if something doesn't make sense".

You can then move onto other areas of life such as family, friends, daily/weekly routines, dealing with things like shopping or doctors appointments, etc.

I found that by changing things in my life to suit me better, and stopping myself worrying about what others thought or feeling guilty for putting myself first, I started to feel more authentically "me". There are some things we can't change, like having to visit the doctor if we have a health issue, but by thinking about how we deal.with that, such as preparing questions and maybe taking a trusted person with you, it can be managed better. And sometimes we just have to remind ourselves that something is unpleasant but essential, but is only temporary and soon it'll be over and we'll be at home relaxing again.

Essentially, I think that happy autistic person = authentic autistic person.

 I hope some of my ramblings might be of help.

Clarkie said:

Has anyone accessed anything useful in their acceptance and unmasking journey that perhaps I could look into?

I found the single biggest help for me (diagnosed in my 50s too) was to get a psychotherapist who really understands autism and work through everything with them.

It took me around 10 sessions to cover all the things that we agreed would benefit from analysing and a handful of follow up sessions to check in and cover less frequent issues / questions or to refresh on some skills.

It costs about £50/session so not cheap, but in terms of value for money it was great.

Just make sure they have a lot of experience in helping autists - mine had 2 neurodiverse adult offspring and she had helped them through their issues growing up so had the practical experience as well as her degree in psychology - a great combo.

Clarkie said:

I don't know who I am.

I find it helps to stop trying to label myself as anything - I am who I am and it doesn't benefit me to try to encapsulate this in a word or phrase.

The therapy helped me understand which of my behaviors stemmed from autism, which from the defence mechanisms from trauma and which were just my own nature - all add up to whatever the jumbled heap is that is called Iain.

Once you can accept whatever it is that you are then it really takes a load off.

Hi Clarkie 

I am 55 and recently diagnosed too. 

I agree it's difficult to know who we truly are without the mask.

I have joined my local autism group. I have been on a couple of walks. I think I'm noticing the real me in this environment. It's so strange, it's made me realize how hard I'm working in every other environment.

I have also accessed 6 online zoom sessions with Autism East Midlands called Empower Autism: Navigating Life with Confidence” course. They are each roughly 2 hours long, so far I've found them informative and helpful.

I also attend private psychotherapy sessions. It was my therapist who first suggested I may be ND. She helps me explore and understand the dynamics of my close relationships.

I hope you are able to access some extra support soon.

(⁠•⁠‿⁠•⁠)

Personal finance is compounding a lot of stresses at the moment.

I am having this exact same issue, I say issue its more like my expectations of what services are there differ from the reality. Which is near zero for most people. Long term support for autism does not seem to exist really unless you are severly impaired or handicapped and require a carer. This seems to be the same with financial support, the tiers are ofset so only those in the most difficulty get help. Which I am ok with too. 

I have found just continuing as I was before, not dwelling too much on my 'new' diagnosis helps. Obviously there are some things I need to sort out.  The expectation from services in the UK is that they will act immediately, I noticed in the news recently there has ben an overwhelming influc of new ADHD diagnosises, when they are already stretched. In some ways finding the information my own way suits me.  

Mostly what I am brainstorming about seems to identify what I suspected, severe underhand discrminination in the work place and abuses of power, taxes and benefits. I'm basically not welcome in offices because of the type person I am (one who identifies who the poopheads are), but thats ok because everyday my life is enriched by not having to work with rude unhelpful selfpromoting people!!

Expectations get in the way. Self sufficiency and independence got us this far. What matters is your network closest to you and the information you find that you see as relavant and inspiring to living the best way you can,

I really think also that the misinterpretation by service providers is about what people with autism actually need. Also the fact that noone has really asked and there was no follow through after the diagnosis - by this I mean with partner services and teams.

Oh yeah! I’ve read that book! It’s a good one. Dr. Price does a great job of showing a wide variety of different experiences in it.

Thanks for replying. The issue is I just don't know - I do not recognise myself anymore and therefore am not sure what I need. I am on a titration wait list already for medication (with P:UK): it's just taking a long time for 'my turn'. I've done nothing but think about this since my autism diagnosis three years ago, I've tried reaching out locally for help but there's nothing in my county and no local diagnostic team so it's just all rather flaky. Thank you x 

Thank you! I'll go look for that. x

I'm so sorry you're going through this. It really is a challenge and is something I continue to struggle with myself.

If you're looking for resources, I highly recommend checking out the book Unmasking Autism: Discovering the New Faces of Neurodiversity by Devon Price. It includes helpful exercises for self-discovery and shares the experiences of other autistic people who've struggled with similar issues.

Hello.

Let's just step back a moment.

What is it you are struggling with? Is it burnout, executive function problems, emotional issues, relationship problems, problems reframing the past, not knowing what to change, sleep problems, feeling lost, just general confusion?

For ADHD to be prescribed something I think  you'd need a GP or GP referral to a  psychiatrist (or private appointment).

They you would ask the the question I expect. So it helps to think about it a bit.

I posted a thread related to masking a week or two ago, with info on what masking is with a bit on what to do. I think there was also another thread in the last couple of days.

But don't feel you have to change. If you have a lifestyle and setup that works for you, then be happy.

Oh that's so good to hear, how lovely you've found such support. Useful to know that medication has helped too. Thanks for your reply xx

Good morning from America Clarkie!

AuDHDer here, too. Being from America, there’s probably very little help I can offer in terms of assistance in joining groups or getting support, but I can share what helped me. After I got my diagnosis I managed to find an art therapist that specializes in Autism. Her experience was a little more centered around Autistic children, but we used the sessions to kind of learn more about how Autism affects me together. That really helped a lot. Strangely, I got the therapy through a grant given by my daughter’s school. I’m still a little confused how that was possible lol.

Getting medicated for ADHD has also helped me. I feel way more balanced with my current medication than I did without. There’s less brain fog and I feel more comfortable socializing. Medication isn’t for everyone, but it has helped me.

I hope you find the help you need. Do know that experiences with feeling grief after diagnosis is fairly common, as I have seen others mention that on here countless times. You’re not alone.