Does anybody here feel like they actually understand what it means to be autistic?

I was diagnosed a little over 20 years ago. I've spent pretty much my whole life trying to figure out what being autistic actually means. I still can't really define it even for my own sake. I talked a little to an American autistic person today. It was a bizarre experience, because they seemed to really understand their own condition. For me, autism has always been treated like an utter enigma even to professionals. I believe I am autistic, and I've been formally diagnosed. But I couldn't begin to explain what that means, or how it affects my life. I just know that I don't cope with stress well at all, and prefer living in a bubble to having varied life experiences.

I was asked what kind of autist I was, as if that's something I could possibly know. I feel like I've been living in a fog, and am only now learning that it might not be because autism is inherently vague and mysterious, but because I was never properly educated on what my own condition is. I'm realising that at 32 years of age, I don't understand the first thing about myself. And that maybe that's not the universal experience for autists that I thought it was.

Parents
  • Everyone is different, everyone he has a different life time of experiences which shape them.

    Your American person has possibly had more therapy as it is more common, they may also have read or watched a lot. I expect it is just a function of time spent on looking at themselves and where their views and issues came from and what they want to do about it, i.e. coping or minimising strategies. Doesn't mean their answer is correct, but at least they think they know where they are.

    A British stuff upper lip, muddle through, introverted cultural difference will no doubt also influence the difference.

    But I am not sure you can be fully educated by someone else. You need to observe yourself because only you know what is in your head and what your emotions and feelings are.

    Since my diagnosis a week ago I have started observing myself carefully. I have succeeded in other things by careful observation, so why not watch myself.

    For example I went to Oxford yesterday and I noted how I felt when getting ready, coping with road closures, find the way, adapting to the changes since last visit, coping with newness, experience of noise and crowds, experience of heat, seeing people, having a meal and following conversations. E.g. heart rate, anxiousness, calmness, facial expressions, etc.

    You also want to look at what to like and are good at, as well as what you are not good at.

    I tend to miss these things because on a day to day basis I have little newness and many fixed routines.

    So what autism means is your strengths and weaknesses and your emotional and physical responses. While there are trends, these are personal.

    I am not sure what they mean by type. 

  • Your American person has possibly had more therapy as it is more common

    Agreed. There is a reluctance from many Brits to seek professional help for their mental health for a range of reasons and it does reflect on their lack of self knowledge on the whole.

    I did spend a lot of time with therapists getting to know my autism and develop useful coping skills for the traits that impacted me and combined with my own research and discussions on this site, I now feel I have a really good understanding on what my autism is and how to live with it.

    It is very common now for me to be able to stop in the middle of any situation and see what influences my autistic traits are having on what I am doing / feeling, and to consider if a different approach is needed. Masking for short periods of time is a great skill to have to co-exist with others while learning to not care about others opinions is an awesome survival skill.

    Doing these effectively takes understanding and practice which are very hard to achieve on your own, so why not get a professional to train you, just like most do when learning to drive.

    One other skill I learned was to use my lack of filters for inputs and a bit of meditation to be able to sit quietly in a bar / restaurant and take in the huge quantity of things happening around me in order to get a feel for the place, plus to identify issues that are worth keeping an eye on.

    Somehow the feeling of that flood of input has gone from being overwhelming to being an ally - and it has helped me in being able to focus when I really need to and shut it out so I can talk to the people with me and not struggle.

    When you do decide to work with a therapist, make sure you interview them first to assess if they really understand your autistic issues and explain how they would approach helping you with them - trust your instinct on whether they sound sincere and knowledgable and don't be afraid to not use them if they don't "feel" right.

Reply
  • Your American person has possibly had more therapy as it is more common

    Agreed. There is a reluctance from many Brits to seek professional help for their mental health for a range of reasons and it does reflect on their lack of self knowledge on the whole.

    I did spend a lot of time with therapists getting to know my autism and develop useful coping skills for the traits that impacted me and combined with my own research and discussions on this site, I now feel I have a really good understanding on what my autism is and how to live with it.

    It is very common now for me to be able to stop in the middle of any situation and see what influences my autistic traits are having on what I am doing / feeling, and to consider if a different approach is needed. Masking for short periods of time is a great skill to have to co-exist with others while learning to not care about others opinions is an awesome survival skill.

    Doing these effectively takes understanding and practice which are very hard to achieve on your own, so why not get a professional to train you, just like most do when learning to drive.

    One other skill I learned was to use my lack of filters for inputs and a bit of meditation to be able to sit quietly in a bar / restaurant and take in the huge quantity of things happening around me in order to get a feel for the place, plus to identify issues that are worth keeping an eye on.

    Somehow the feeling of that flood of input has gone from being overwhelming to being an ally - and it has helped me in being able to focus when I really need to and shut it out so I can talk to the people with me and not struggle.

    When you do decide to work with a therapist, make sure you interview them first to assess if they really understand your autistic issues and explain how they would approach helping you with them - trust your instinct on whether they sound sincere and knowledgable and don't be afraid to not use them if they don't "feel" right.

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