Regression

I never gave medical advice your putting words in my mouth. Where did I give medical advice anywhere in what I said? I didn't. So I don't know what you mean. I expressed one possible explanation of a cause of autism of which there are many. Alcohol is also a factor in the etiology of autism. So is genetics. What are you proposing? That autism comes from thin air? I really don't understand what you are saying and I have autism and ordinarily struggle with communication anyway and you are making it worse right now.

Dear Bananatropics26,

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You may want to look at the National Autistic Society page The Causes of Autism which explains there is no link between autism and vaccines. Much research has been devoted to this issue over the years and the results have comprehensively shown there is no link. Find out more on the NHS website.

Kind Regards,
Rosie Mod

Dear StUrungusPolyP, 

Thank you for posting and telling the community what you are going through. I was concerned to hear that you have been “stalked drugged and groomed”. 

The National Autistic Society does not currently operate a crisis or emergency service. We advise you to contact 999 or any of the mental health crisis lines listed on our Urgent Help Page if you are at risk of immediate harm: https://www.autism.org.uk/what-we-do/help-and-support/urgent-help  

To report a crime, serious incident or emergency that is happening now or about to happen: 

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• People with speech and hearing impediments can use a Relay assist: https://www.relayuk.bt.com/how-to-use-relay-uk/contact-999-using-relay-uk.html 

• Make a silent 999 call: https://www.police.uk/pu/contact-us/what-and-how-to-report/how-to-report/how-to-make-a-silent-999-call/ 

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You may also find the following useful:  

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Support services that may be helpful:   

• Samaritans: Call 116 123 for free, 24 hours a day, 365 days a year.  

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• SANEline: 0300 304 7000 for anyone experiencing a mental health problem or supporting someone else (4.30pm to 10.30pm, every day)  

• Campaign Against Living Miserably (CALM): for men 0800 58 58 58, (5pm to midnight every day).    

• Shout 85258: a free, confidential, 24/7 text messaging support service for anyone struggling to cope.  

We hope this is helpful to you.  

Kind Regards,

Rosie Mod

Discovering that RSD was an actual thing, something with a name, was quite a big moment. It is one of the biggest causes of anxiety for me, it can ruin a whole day, a week, in an instant, just for (probably) misinterpreting someone's reaction to me. 

It still happens and affects me greatly, even though I can now identify it and try to silence it.

True, but also I risk going back into burnout if I try going back to what I used to do 5 years ago. I'm fine being limited and I don't need to socialise to be happy.

Paul, everything you said is so familiar, I think I have a large case of RSD now too.

Just one thing when you mentioned that your memory is worse. I found that during lockdowns I really struggled remembering names, it got so bad that I started to worry I had the early signs of dementia. Then one day I was reading an online article that this was actually a growing problem during lockdown amongst lots of people because they weren't exercising their brains normally, being isolated. The brain is like a muscle, if you don't use it you lose it. When the lockdowns ended I went back to socialising as much as I could with friends and family and gradually got my memory back after perhaps 3 months or so.

This seems to fit with what you're saying with now that you're doing less socially and workwise?

Thankyou for those replies :)

I've just come back to this and seen everyone else's posts too, like JT says it's a relief that we're not on our own.

As it happens I saw an ex girlfriend last night, my first girlfriend which was when I was 19, which ended because I had what I now know is a shut down. I now realise it was because being with her was completely burning out my social battery. This happened with other people too later, girlfriends and male friends.

Anyway, she married an autistic man eventually and now has an autistic daughter, and works as a Neuro diverse Councillor. A good person to talk to

I talked with her about this very thread and her thoughts were that regression was quite common with a late diagnosis. She said that eventually you work through this very difficult period and come out of it better for the diagnosis, and the knowledge of who you are, and go in a new direction again. A new chapter that takes knowledge from both pre and post diagnosis phases and puts them together to work out the best way to go forward to a new phase. I hope that makes sense. 

In my case I think that means that I should partly go back to my mindset before the diagnosis. Trying to keep battling away and keep achieving things, keep working hard to be better with people, keep pushing myself out of my comfort zone, particularly with NT's. But just being a bit kinder to myself if I fail this time. It does seem that most of us on this thread have taken their foot off the gas socially and spent time self analysing. Lockdown too seems a common culprit.

Because I've got  into a bit of a bad place now, it will take some time building myself back up slowly, as if I go too fast I will get knocked back down again. I would love to learn how to care a bit less what people think. But I feel now that this seems to be the best and most positive approach. 

Yeah I've been stalked drugged and groomed because I was diagnosed with aspergers but the confusion surrounding the changes in how the dsm 5 recognise aspergers syndrome led some people to believe that all people with aspergers syndrome or oppositional demand avoidance actually changed into classic autistic rather than the words in a book being the things that changed , they seen me as they see calsic autistic people and I seen people for what they were , [content removed by Moderator due to breaches of rule 4 of the online community rules and guidelines] , I doubt I'll ever smile an honest smile again. 

Yes interesting. I like to think of autism as an insidious disease that infests the human mind. I feel damaged mentally or neurologically however you wish to phrase it. Something just doesn't feel right I am constantly there but not fully there at the same time if you get what I mean by that. People always talk about 'the lights are on but no one is home' I mean something like this. I find autism as a topic highly interesting. I constantly get throbbing pains in my head especially in response to loud noises or bright lights. I take paracetamol from time to time to combat this. I even went to see a neurologist which I had to wait a few years for. But they have sent me for a brain scan I do wonder what this scan might show to be honest but time will tell I suppose. By the way I have never had my head scanned not once. I understand that it's not something most autistic people get the chance to experience so I am grateful in that sense haha

Yeh screw society. I don't like this world it's not friendly enough.

People, or commerce? Capitalists rule the world and it makes me sick

Agreed!!

In my experience life is a constant form of two steps forward and there steps back. Resilience is built and that takes times and self belief, things we all struggle with I'm sure stay positive, you can doit ️

This is interesting. The vaccine convo is defo an area of interest given it's so widespread for kids

Sorry to hear that too. Keep the faith. I find that when I look to animals they help to both calm me and restore my faith in living as part of nature. They never change, it's only society that does all the problem causing!

For me lockdown was tough, but also meant remote working began, which all but cured my IBD! Now, as everyone returns to commuting to work (in a climate crisis, this still BLOWS MY MIND! Humans are simpletons!) I am similarly faced with pressures to travel, be surrounded by crowds, and so I am stuck with how to make next steps without confronting those realities.

Listen to Number and your life will grow, that's a promise.

Thanks for your responses everyone. It seems to be affecting all of us similarly. Which in many ways is a relief.

I think, on reflection, my issue then isn't that I'm alone in this, or it being something I shouldn't be feeling, it is, in fact normal! Yay.

On further reflection, I think my issue then isn't one of 'problem' and is really one of adaptation. Change being famously difficult for us all, is actually constant. It's only my perception of it and fear around it that is holding me back.

One thing that has helped me is preparing. Having enough savings so that when works gone quiet I have a couple of months fallback. Also, being open with my partner about my struggles and need for space etc has helped, it's also great that she at least tries to understand.

In many ways things things are great, I guess it's just the long journey of self acceptance that we are on. But it's so nice to hear we are all on the same journey  The path to freedom as it were 

I'm self diagnosed as of 3 years ago, but I've also noticed this. I no longer have the spoons to teach fitness classes or work in busy environments. My memory seems to have worsened, and I also don't make much eye contact when I'm out in public due to the risk of RSD if my nod or smile isn't returned. I also only talk to friends online now because face to face meetings are so exhausting.

I do think that a lot of my regression is a mixture of burnout and also unmasking. Recognising that I'm AuDHD has helped me to realise what drains me and/or triggers me, so I actively avoid those scenarios or environments in an attempt to keep myself safer and happier.

Unfortunately that does mean my social and employment options are more limited these days. There's no way around that though if I want to continue to function.

That's sad sorry to hear that. Lockdown was bad. I didn't like it much

The past few years have been really difficult for myself and other members of my family and I feel we are not coping as well with life as we were before the pandemic. Withdrawing from many aspects of life during lockdowns etc suited us on one level, but the isolation made ‘going back’ to ‘normal life’ really hard. I got really ill with Covid too - and was left with ptsd and really severe anxiety because of that. It’s taken 3 years to get back to anything even close to normal for us (as normal as we can be anyway!). But we get so easily overwhelmed by everyday things that a lot of people find easy. I in particular find being around lots of people and crowds really difficult. We found getting a diagnosis to be a positive thing - but the pandemic had a really bad impact on us - and we are still struggling with the effects of that.