Published on 12, July, 2020
Hi.
Let's start with the fact that I am not formally diagnosed and at this stage have no intention to be.
If that is an issue to people in this community, please say so.
On to my reason for being here...
I have wondered for a long time if I may be on the spectrum. However, I've honestly seen all labels as negative and so I never really acted on what I wondered. I recently labelled myself (with certainty) in another aspect of my life, and I've discovered what a benefit a supportive community of people with something in common can be. So I've been led to revisit this potential part of me. I know that it isn't possible for me to say that I am on the spectrum without formal diagnosis, so I'm not looking to claim this as a part of me, but I thought it might help me to join a community where people share some of my experiences, even if I don't have autism.
If that's ok?
My main reasons for thinking that I might, and I hope not to offend with these assumptions:
- I need routine. Anything that breaks my routine upsets me.
- I need my own space. A room for my belongings, cupboards and freezer drawers in the kitchen that are specifically mine. I can't share storage space with my husband without feeling stressed and uncomfortable.
- I need to plan. Spontaneous decisions cause me extreme stress. I need to prepare in detail fo everything, including attempting to plan social interaction to the word (not that life works out like that!). Phone conversations are particularly difficult, as are meetings, as they often put me on the spot too much.
- I have always found social situations extremely difficult. I didn't socialise at school and was known for being silent (and as a result was bullied). As well as needing to 'plan' social situations in my head, I find that when I'm communicating I repeat myself frequently and also jump in at inappropriate times and cut people off. I do recognise that I'm doing this as I notice the facial expressions of those that I'm talking to, so I'm not completely unaware, but I can't control this and I do often only become properly aware after the fact, when I replay the conversation in my head. Also, related to this, I tend to talk about myself too much and forget to ask questions of others/let them talk about themselves, even though I genuinely do care!
- A lot of saying the wrong thing and not understanding why it's the wrong thing, or realising after the fact.
Final info about me:
Married mum of one. Late 20s. Businessperson. Lover of photography.
EDITS:
Something else that may or may not be linked is that I have a very 'bouncy' walk. I didn't realise that this might be something to do with it, but I've now been browsing the forums a bit and this has come up a couple of times. I've always been embarrassed by my walking gait and people sometimes comment on it, but I didn't even think of this as linked.
Ditto, if it's linked, the feeling of being overwhelmed by tasks. I strive for perfection with things like cleaning, but I get overwhelmed trying to work out how to get there and I don't see a middleground, so I end up being unable to do anything. Again, something I've found on a thread or two.
Also how I can't deal with eye contact very well. Particularly in intense conversations where I need to look elsewhere - usually at a screen or, at my worst, hiding under a blanket.
Another addition...how I am unable to socialise for more than an hour or two without becoming uncomfortable. If I visit a friend's house, I tend to start to feel a twitchy need to leave after a couple of hours even if I'm technically 'having a good time'.
You're welcome.
The inheritance of autism is a hard one to get one's mind around sometimes. My situation is the mirror image of yours, in that since revealing my diagnosis to family, I am learning that many of my traits seem to have been present across a few generations. My Mum, in particular, has been very open with me, and we're astonished to find how much we have in common, but never knew before because of our 'normal camouflage'. My Dad, I'm less sure, I didn't get on with him too well - but I'm beginning to wonder if he had a slightly different sub-set of autistic traits. I see more of him in me as I age, especially his stubborness!
My understanding of the recent science is that autism occurs due to mant different combinations of multiple genes - it's not an on/off single gene thing; e.g. Downs syndrome. Those genes are all around us, coding for a little bit of trait here, a bit of another there. The huge number of combinations gives rise to the huge variety in human personality.
So, within a family, there could be a genetic disposition to enjoying categorising things, or introversion, or a wandering attention. Once in a while, there's a person born who gets a combination of genes from their ancestors that gives them the particular mix of qualities that we call autism. And the diversity of autistic people is vast too!
So just like any child, your daughter could inherit any mix of you, your partner's, or your ancestor's traits - and that includes, of course, the traits that have allowed you to be a successful business person, wife and mother.
My Mum grew up with a younger brother - he was easily my favourite uncle. Which is rather odd, because he was a reclusive guy like me - and not prone to saying very much on the rare occasions that I saw him. All through my life, when my Mum was in a rush, she'd call me by his name - and we are incredibly similar both physically and in personality. I'm starting to realise, I think, that my autistic traits didn't seem too out of place for my Mum when I was a child. She always understood my need for "me" time to keep me from burning out, and reassured me that my special interests were OK as long as they weren't interfering with my school work.
If your daughter does take after you, she couldn't have a better ally than a Mum who really does "get it" at those times when the rest of the world seems not to.
It's strange to think of all those people in the past who must have lived lives with autism without anyone knowing what it was, or having anyone to share it with.
Thanks for all of your advice! My career is definitely secure in that I run my own (phone free) business, haha! I never took well to authority and instruction and the broad requirements of a job working for someone else, but love working for myself.
Only one other concern for me, now, and that is something for me to work through here on the forum in time, I suppose. My concern about 'passing it on', as the implication is that if I am on the spectrum it may be hereditary to some degree. I originally started to look as my toddler is showing signs of social anxiety, which was what triggered me to want to know more about myself. No other signs yet and her eye contact (as well as socialisation with adults) is excellent, so I can assume not, but it is a slight worry now. Still, it's something I can keep an eye on and I hope I can provide the right support if she does show signs.
I spent some time doing online tests today and received this result for the test that seemed most recommended. I don't know what, if anything, this means for me, but I'm keen to continue learning:
The Ritvo Aspergers Autism Diagnostic Scale (Revised) is a diagnostic tool developed for use in clinical assessments of ASD. It is lengthier than the AQ-10, but is more accurate in identifying adults with ASD. Score:119 Your score falls into the range for high probability of ASD (score >= 72), and is therefore a positive result.
Thank you so much or talking with me and making me feel welcome!
Ah - another one who dislikes telephones! I'm astounded by how common that seems to be among people on the spectrum.
If you are secure in your career, and can manage your autistic traits well, then I think you're right - having a formal diagnosis could be a lot to go through for very little reward. Even though I am diagnosed, I very rarely disclose autism per se to anyone except closest friends and family. It was only other, more pressing, difficulties that made getting formal confirmation appropriate for me.
Most problems that autism can cause relate only to a small sub-set of the traits at any one time, so I reveal only as much as is needed by stuation in hand, on a need-to-know basis. Unfortunately, many people have a limited awareness of what autism is. Even if they have the kindest of hearts, you don't know what misconceptions about autism they will have if you mention in directly. They can easily make lots of assumptions about you, and you won't know which ones. Pulling out my evaluation report would be a desperate last resort, that's for sure!
Thank you.
I have no need for a formal diagnosis. There's nothing I want from it and I believe that if I am on the spectrum, I've learned how to get by in life just fine. Conversations don't always go smoothly and I don't find socialising the easiest, but I do manage and I'm thankful that we have so much online communication now - I rarely need to use a phone! If anything, all a diagnosis would give me would be the confidence to mention this to someone else as a 'reason' for my behaviour, which would be helpful perhaps but isn't a valid reason for going through that process.
Already I've found this community helpful for showing me some other things that may be linked (the edit), and also for a few tips and coping strategies that I've found valuable. Not only that, but also confirming in my head that I might be on the spectrum is already helping my confidence - I've always come away from awkward conversations thinking "I'm weird. They thought I was weird" and "Something's not right", but after a bit of awkwardness yesterday I walked away thinking "it's ok - if this is Asperger's then there's nothing wrong with how that went". It sort of put the issue on to them, rather than me - "this is who I am and there's a reason for it".
Welcome, songwriter.
Have no fear - you are most welcome here. Although I do have a formal diagnosis, I would say that joining in communities like this one has meant far, far more to me than anything a doctor could say. Unless you have a specific need for a formal diagnosis (to access services for example), the most important thing is to find wisdom and advice that helps to make your life less stressful and more fruitful. People who live the autistic experience every day are exactly the right people to to get that kind of advice from, and you will find the majority of forum members to be compassionate and endlessly generous with their help and understanding.