My head's fell off....

Hi Community!  Hi Mods!  I thought I'd introduce myself.  I'm Andy!

My journey started a couple of years ago when my wife & I recognised signs of ADHD in our then 9 year old daughter.  We did the usual online questionnaires, and decided to go to our GP to get her checked out.  Low and behold, 12 months later paediatrician diagnoses her with Inattentive ADHD.  You know how things go, though - you're filling in these questionnaires and answering them for yourself - my answers were quite similar to hers...  Intrigued, off I went to our GP down the right to choose route - and 12 months later diagnosed with Combined ADHD - but the psychiatrist was also ASD Qualified, and told me there and then he thought I might be Autistic, and asked for me to be re-referred for that route.  I wasn't convinced.  Along came the questionnaires, and then the appointment (11 weeks after my ADHD diagnosis) - a different psychiatrist added Autism to my wrap sheet.  

My ADHD diagnosis I'd met with "nothing's changed, I'm 44 and I've made a pretty good career with it", but the Autism diagnosis has hit me HARD.  I think it's the combination of the two more than just Autism.  So my head's fell off completely - I'm feeling quite lost as I'm now looking back at 44 years of my life with masking, and wondering now what is mask, what is me?  I want to be able to unmask as much as possible, but it's hard when you don't know where you're masking.  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.  Don't get me wrong, I'm looking back at those 44 years and certainly some stuff makes sense - friendships (or lack of), social awkwardness, day-dreaming, creative, struggled academically but amazing fact recall, ability to find answers where others can't, hugely logical mind (but also chaotic).  

So I guess for now I'm just going to have to try and figure it out myself...  What makes it worse is that 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?"

I'm not down, or depressed - just extremely confused and a little lost at the moment.  

Thanks for listening!

Parents
  • 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.

    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.

    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.

  •   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!!!

Reply
  •   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!!!

Children
  • 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!!!!!!!!!!

  • 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!Sparkles

  • 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.

  • 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.