My head's fell off....

Hello onedego 

Welcome to the Community and thank you for sharing your story with us. I hope you feel well supported here and manage to connect with people who share similar experiences. You may find it useful to have a look at our pages on 'After Diagnosis': https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/after-diagnosis 

All the best,

Chloe Mod

This is great! I will let it sink a bit to get the courage! Also I have to be trained to communicate my needs (walking when talking, not long meetings, no harsh lights etc) Many many thanks for your advices!!!!!!!!!!

Ma.ra. said:

I should tell somehow this, but don’t know how.

If these friends know they are autistic then I'm pretty sure they will want to know they are causing discomfort with their way of communicating.

That said, there is a diplomatic way to tell them this that should limit the chances of it hurting them (we are often rejection sensitive after all). My approach would be as follows:

1 - start a conversation with them about autism, maybe something like "I've joined this online community about autism and have been talking about my issues with having conversations. You're autistic too, right?

Do you have issues like me where people don't seem to want to chat with you for long?

You do? It's tough so I asked for some feedback and do you know what they said?

They made me realise I only talk about things that interest me and I often don't give people a chance to talk. Do you get that?

2 - listen to what they have to say. 

It may take some time to settle in enough for them to think about it so just tell them to think about it and we can talk next time - self reflection often takes time.

3 - on the next conversation ask if they thought about it. The diplomatic way is not to tell them they have this issue but hope they will ask if you noticed anything or for your opinion.

Think of how to tell them they have this trait - maybe something like the sh1t sandwitch approach to criticism:

"You are really knowledgable about architecture although we don't talk about much else. I love to pick our brains about it though and it isn't an issue for me. Is there anything you think I should be talking about when I'm with you?"

and for the other friend

"We often have long, in depth conversations that I really enjoy but I think it would be nice if you asked me for input during them more. You really know your stuff and I love learning from you and I would like a chance to give you input during the conversations to make it better for me too."

You see the bad news sandwitched between two compliments.

That is how I was trained to deliver criticism at this level.

There is always a risk that the person may be ultra sensitive to any criticism so you need to be prepared for that and ideally do it towards the latter half of any meeting in case it goes sideways.

LOL I bet you wished you hadn't asked for advice now

Also Thanks a lot for your example! I think I will get resilient in this community! I am less sad since I started to chat here!

Hey! Yes, I do get it now! Also, you know, this is important for me. I can’t handle harsh lights and I can’t sit and talk more than an hour so I ask my friends to walk with me or to go on a hike where I can connect easier cause the forest and the monotone walking is calming me. I basically have to train my friends to do so and I often lie about the whys. And I have a buddy, kind of, living with autism and he can only talk about architecture, so whenever we bump into each other I try to focus not to tell him anything else, but it is very hard even for me. And an other friend with autism talks in long monologues, like for 30 minutes, and I always get a headache, I should tell somehow this, but don’t know how.

Ma.ra. said:

would you be so kind to tell me an example of this the comfort of those I am with?

If your default state has you stimming by, say, flapping your hands, rocking back and forth or behaving in a way that people feel uncomfortable with - this is what I refer to.

I have seen people pick up on this and start harassing the person just for being themselves - whatever the trigger was it made them uncomfortable enough to react against it to the detriment of the target.

People should be accommodating but the fact is many are not. Many will see this sort of behaviour and move away, make comments, mock the person or get aggressive towards them.

For these reasons I advocate masking if this is your unmasked behaviour.

I hope that makes sense.

You are still recently good at your job, as you've used your natural skills and interests to excell. That isn't masking, that is playing to your advantages and is how autistic people can still thrive despite having spikey profiles that can give us difficulties in other areas.

Dear Andy! All the best for you!!! Your letter helped me a lot now! Thanks!

 Iain would you be so kind to tell me an example of this the comfort of those I am with? : ^I find it is essential to mask in some situations for our own safety or for the comfort of those we are with - you can decide what levels you mask once you start to spot this.^ many thanks!!!

Hi and welcome to the community. It's common to feel a bit discombobulated when you first discover that you're on the spectrum, so you're not alone.

There is an article on masking in the advice and guidance section of this website, which you might find helpful:

https://www.autism.org.uk/advice-and-guidance/topics/behaviour/masking

I think it's the industry that I work in - it lends itself to Neurodivergent people.  One of those people is also married to someone who is Autistic, so I guess he just recognised it in me and never thought to ask, or didn't think asking was a necessity.  

What I have realised is that I have issues with things clinging on my legs.  It's 0 degrees Celsius, and I'm still wandering around in shorts - but with my hoodie sleeves over my hands - my wife has adorably called it my "Penguin Look".

It's crazy I'm an IT Infrastructure Engineer, and the diagnosis has kind of thrown my career into "doubt?".  It's a career that I've excelled in, and am extremely good at it - but many of the "ah hah" moments have been in relation to work as I've realised it's not that I'm extremely good at it per se, but that ADHD & Autism makes me naturally strong at it.  Maybe this is the "superpower" that some teachers refer to with the kids in schools?

I could go either way with the feeling different thing. I tried so hard to not be different but when I had thoughts that maybe I was actually different, I would dismiss that as fantasy and insist to myself that there was no reason for my difficulties other than a personal failing.

When I was in the process of being diagnosed someone said they thought I knew. It then made me panic that everyone had known apart from me. They didn't, before you worry.

Some of the confusion is due to lack of knowledge. It takes a while to find stuff, absorb it all and work out what applies to you.

For me it hit quite hard: to be told you actually are different when you've tried so hard to not be, is difficult. But if you can embrace it rather than fight it, it gets easier.

Good morning from America, onedego!

AuDHDer here. Having a child was also a big reason why I pursued a diagnosis for myself (Though we got mine before my daughter’s).

onedego said:

I've spoken to a couple of people who I've known for up to 6 years and told them of my diagnosis and they replied "I thought you knew already?"

That’s interesting! When I told friends and family I did get a few “That makes sense,” but I also had my fair share of “That’s not right. You’re too high functioning to be Autistic.” I don’t think anyone said that they thought I knew already.

onedego said:

I want to be able to unmask as much as possible, but it's hard when you don't know where you're masking.

What has really helped me to understand what is masking for myself has been learning about others’ experience with masking. This site is a great place to start. There’s been a lot of times I’ve read other Autistic’s experiences and thought “Whoa, me too!” A good book that has helped me as well is Unmasking Autism by Devin Price, which shows a wide variety of Autistic experiences. Learning about what exhausts and drains you can take some time, so remember to be patient with yourself.

But, as Iain said, we sometimes need to mask for safety. It’s not always a negative.

Overthinking it will make you more confused and lost. Im undiagnosed autism and adhd and always ill and confused. Trying to figure things out sends me down more and more rabbit holes. My advice would be to focus on things your certain off rather than looping in confusion and getting more lost.

onedego said:

the Autism diagnosis has hit me HARD.

I find it helpful to think that the diagnosis is simply a label that explains how your brain works. Treat is as if you have a car that is red and you wonder what shade of red it is. You now know it is burgandy. It is the same as before but now you know the exact colour and that helps you colour match paint to treat any scratches.

onedego said:

what is mask, what is me?

It is all you. Everyone - even neurotypicals - mask to a degree. It is a fairly human survival trait but autists tend to use it more because we lack the intuitive social skills that others have.

If you look at a situation you are in where you are masking - think how it differs when you are with people you can trust to be more yourself when around them and realise where you are acting differently - that is the mask for that situaiton. We have many masks and it can take a long time to discover them all.

With or without the mask you are still you. All that is happening is you are acting a bit differently so over time you can work out what the acting is and decide if you want to drop it or not.

I find it is essential to mask in some situations for our own safety or for the comfort of those we are with - you can decide what levels you mask once you start to spot this.

onedego said:

Apparently, I'm supposed to be being referred for "therapy" to help me figure it out, but I'm not holding my breath at the moment as Mental Health services in my area are absolutely shocking. 

From what others have reported here, the quality of autism related therapy available on the NHS is aweful. It is much better to go privately where you get to chose the therapist and interview them to make sure they really understand their stuff around autism and have a specialisation in any problem areas you may have.

At around £50/hour it isn't cheap but is a worthwhile investment in your own capabilities and mental health.

Hi Andy. Sounds like you are in the same boat as me. I went down the autism rabbit hole first though and have literally just got my diagnosis two days ago. They also suggested that it would be worth me getting assessed for ADHD.

I waited a long time for my autism diagnosis so I feel like I had already fully accepted that I was autistic when I got diagnosed. I have felt quite emotional since diagnosis though. Autism is, to me, a really tricky one to get your head around. With ADHD, I feel like I have had plenty of moments in my life when I have glimpsed what it is like to not have it so it seems relatively clear to me what it would be like if it went away. With autism though, it is so tied in to my sense of self that it is very difficult for me to conceive of what life could possibly be like for someone who isn't autistic. I see the decisions and behaviours of some neurotypical people and I cannot even begin to imagine what thought process (if any!) led them to it.

Reading and learning have really helped me in my acceptance. This forum has been invaluable for hearing other's experiences and being able to relate to them. There is so much information out there now and you will know what is relevant to you and what isn't. Good luck, and give yourself time to let it all sink in.