How to tell them? Or tell at all?
Right now, I am in a situation that both makes me happy, but also concerned social-skill-wise. I am living with my gf and her family at this moment, and despite cultural differences, I sense that they have a hard time to understand me fully, as they messure me by NT standards. My gf knows about me, her family not yet. Now I am wondering if I should tell them by myself, or let my gf do it or even not tell at all? I'm a bit confused, obviously.
The issues I face are small everyday things that might appear odd to them. For example, when my gf is not around, I do not want to talk much or have others around me, I rather focus on my special interests, play games or simply sleep. It also happens, when she comes back from work, that I'm still focussed on my stuff and do not notice her until I am done with my stuff. I can talk to her about it, she would understand. But what about her family? Maybe if they knew, it would be easier for me and for them to understand and not interprate my actions the wrong way? I really try not to "advertise" my AS too much, because I do not want to be reduced just to that. So what's the best thing to do, can anyone give me some advice?
Thanks for all of what you shared, TP-P. I guess I'd just agree with a lot of what you said. I'm careful of where and with whom I share that I'm an Aspie. Most times I don't. If Asperger's is a factor in something that's going on, all I say is something like, "I have sensory issues, so I'll have to retreat for a bit to recharge, and thank you for understanding." Or, "I'm sorry I didn't catch on to that joke or sly comment, but I tend to take things literally." Things like that. I wouldn't share about being an Aspie unless I was doing it from some position of power, like, the strengths that can come from Asperger's, like strong focus and attention to detail, are valuable to others. There is still too much ignorance and stigma attached to autism and Asperger's for me to feel comfortable sharing too freely. The fact of me having Asperger's wasn't even completely safe with one or two of my relatives. So I'm very choosy about who knows this about me. I give it a lot of thought, and if I think that there's any chance that a person's knowing I'm an Aspie might lead to trouble, I keep it to myself.
I have an update... There were a few quite difficult situations that have caused misunderstandings on both sides and I had no clue what to do or how to react. I felt very bad that I couldn't act the way I was expected to, and a small thing became bigger than it was, to me, to my gf and maybe her famiy as well. I started to cry and appologized for what happened, but I also thought this might be the right time to tell everyone. So I asked my gf to translate for me. Their reaction was really kind, her mom hugged me, my gf had tears in her eyes too and I just felt relief. I told them that things will not be always easy with me, but I think now they can help me if I need it.
I have an update... There were a few quite difficult situations that have caused misunderstandings on both sides and I had no clue what to do or how to react. I felt very bad that I couldn't act the way I was expected to, and a small thing became bigger than it was, to me, to my gf and maybe her famiy as well. I started to cry and appologized for what happened, but I also thought this might be the right time to tell everyone. So I asked my gf to translate for me. Their reaction was really kind, her mom hugged me, my gf had tears in her eyes too and I just felt relief. I told them that things will not be always easy with me, but I think now they can help me if I need it.
sorry, double post...
Hi Anneyce, that's great news. I'm very glad to hear that you felt able to share about your AS and that your gf's family were so accepting of the news. I wish you good luck with the future.
When we can accept ourselves and others just the way they are life is much easier!
x
TP
Hi Wollstonecraft,
Thank you for sharing. I liked your post a lot - especially the phrases you use when you are explaining a difficulty you have without going into details about the AS. I feel that many people - even those without AS - often have difficulty accepting and expressing their needs which can lead to unnecessary conflict. Therefore by stating simply what your needs are you are also empowering other people to do the same - even NT people!
The majority of people I have spoken to specifically about AS either don't know much about it or only know about how it manifests in people with quite severe autism. Most of them are highly sceptical that I have Asperger's or say things like "I hope you don't". Initially this would often throw me into a panic and I'd have to start all over again with my reasoning and do more research. The more research I have done the more sure I am that I have Asperger's. Ironically, I feel better about myself in the framework of AS than without - because it explains my strengths and weaknesses so accurately. I don't feel bad about AS I feel hugely relieved by it!
That being said, I am very much looking forward to getting an official diagnosis. Once I have that external legitimacy I feel the people in my life will be able to accept that I have Asperger's and will then be able to start learning about what it is and how it manifests in adult females who do not have a subnormal IQ.
Its a rich and complex world we live in. I guess the key point I would like to get across to the people in my life is that I'm not looking to use AS as an excuse not to live, for me its a solid place to grow from. Once you've accepted where you are then its much easier to plot a course to where you want to be.
x
TP
"No, you're not autistic"... I know that one from somewhere. I was thinking to get an official diagnosis, but then I asked myself, what would it change? Is it all worth the effort, just for clarity's sake? I came to the conclusion that a diagnosis will not change much, the problems will stay the same, and those who don't want to believe me, they never will no matter what. But at the end of the day, do I really have to prove anything to anyone? I have been so many times in the situation where I got blown off, yet it turned out that I was right. I think Tony Attwood mentioned somewhere that those adults who suspect to be an Aspie are 80% right, that's a pretty high score if you ask me. Maybe one day I will decide to get a diagnosis, but at this time, I see no advantage from it.
Thank you for your response to my post. It was very thought provoking.
We are all on different journeys, and each is valid. I guess for me getting a diagnosis is very important for several reasons.
1) I am 34 and I came from a difficult family who were also pretty poor. I have struggled my whole life to make sense of the world and manage all the pain I felt. This has meant that I have had to disentangle what I can and should change from what is integral to me and should be respected as such. Luckily "untying knots" is something I've always been very good at. Having discovered that I basically have an untypical brain and that there are many other people out there who have the same daily challenges as I do is huge! I'm excited by it and want to know as much as possible.
Tony Attwood said the following in his "Complete guide":
pg28 - When adults with Asperger's syndrome have used imitation and acting to achieve superficial social competence, they can have considerable difficulty convincing people that they have a real problem with social understanding and empathy; they have become too plausible in their role to be believed.
I have always been able to act. Unless whomever I get assigned to for a diagnosis is very good, I fully anticipate that I may have a fight on my hands. I am prepared to fight for this, and I anticipate that both myself and any health professional I meet along the way will be the wiser for it. Basically I'm prepared to walk that gauntlet and see what its like - and try and leave it better for my passing. Its the kind of battle that fits who I am and will grow me in areas I'm interested in - I've read a lot about psychology in my time and have found a lot of pleasure in doing so.
2) I come from a big family made up of very different personalities. As the oldest girl in a family where the parents were pretty unrealistic I felt I had to be the strong realistic one from an early age, first to get my needs met, but also because I couldn't bear the thought of leaving them all struggling. This has meant that I feel a natural urge to help people and have very real first hand knowledge of the good that can be achieved, and the pain that can be relieved, with a little understanding.
Finding out about Asperger's has been such a huge relief. It doesn't stop me finding day to day reality difficult but knowing why I find it difficult has cut the pain substantially and enabled me to be more aware of what help I need. I have a real urge to share this knowledge because I can see the good it would do for others who have the condition but just don't know about it. If I want to do that I need an official diagnosis.
3) Lastly, I strongly believe that my son has Asperger's. He's been speaking in complex sentences since he could talk, frequently using long words – sometimes inappropriately or self-invented. He has always been extremely sensitive to noise. He speaks to everyone as if they were his equal. He doesn't really "get" other children. He finds concentrating on tasks he's not interested in (like learning to read) frustrating, stressful and exhausting. He has an unbelievable visual memory for stuff he's in to. The list goes on.
His father (who I am no longer together with) is a very concrete reality kind of person. He is sceptical that I have Asperger’s and thinks our son is just a bit eccentric, but if I am diagnosed than he has said he would be supportive of our son being tested. This support would be essential for my son's emotional well being. He thinks the world of his dad and it would be too stressful for him to do this without his dad's full backing.
One thing at a time though. I am a strong believer in the idea that if you want to help others you should always "put your own mask on first". You're no good to anyone if you can't breath. So I'm going to concentrate on my own diagnosis first.
In the meanwhile I have been applying the techniques in books like "The complete guide" to my son in areas where he struggles - with great success. Its been very relieving for both of us!
Having said all this I fully understand that other people have different personality types and different personal drives in their lives than me and would not expect others to feel the same way as I do about taking personal responsibility in spreading awareness. I would like to empower others to take personal responsibility for finding happiness in their own lives in whatever form is most natural to them. So I was really very genuinely pleased to read that you have found support for yourself from both your gf and her family.
X
TP
Hey TP,
I can relate to what you wrote, especially the "difficult family" part. Not that my family was big, but my country of origin was not the richest, so you can imagine that things weren't always easy. On top of that, my family is not the most loving and supportive one, so that made me more of an outsider than I already felt like. Although I always was in my own little world, I kinda did missed something that NT's call warmth. Just now at age 35, where I decided to stay with my gf, I can scence this kind of warmth I never had all these years. Weird enough, as they are technically strangers to me. Still, I am in a new country, but yet feeling kinda home.
While reading the paragraph about your son, I felt like you pretty much write about me. *blush* The word AS hasn't even "existed" when I was a child, not to mention any kind of therapies or help. If the diagnosis would get your son help he needs, than it's an important thing to do. Hard to tell, but maybe if I've gotten some help back then, some things might come easier to me now.
As far as my thoughts on my diagosis go, if I get a chance to do it, I might consider it one day, but for now, I've put this aside.
Knowing about my AS is not always a relief to me... well it is in some way, like you can explain why you are who you are, but in the proces I find more and more problems and lacks that I even haven't been aware of. That can be sort of shocking at times. You find out about one issue, and it puts 10 more on top of it. It's like: "Oh... so that's why... but then.. OMG, now I know why so many people have turned their back on me!" Don't know how else to explain it, hope you get the idea though. :)
Hi Anneyce,
So you were a little professor/ philosopher too! And me. 
Speaking about difficult families, these days when a child is diagnosed with any kind of autism Doctors look to the family because it is likely that at least one of their parents will have it too. This being the case I am not surprised when I read about AS women who have come from difficult families, because if either of their parents had it and it was not diagnosed this would strongly affect how well that family functioned.
Speaking to my dad and interpreting the stories he's told me (and having read a bit about the different types of Autism) it seems to me that my dad has it and his mum had it. And it caused substantial pain - and quite a lot of odd behaviour - in both of them.
His mum was not at all warm or motherly, but was extremely punctual and logical. He said he was "unfocussed" up to the age of 5 and not able to communicate with the outside world much - so much so that his dad once burned him with a cigarette just to try to wake him up a bit! It seems his mind was finally brought into focus by a couple of accidental big electric shocks he had as a child.
His thought processes are very patternistic – he likes to bring together ideas and link them up. I didn't realise this until we had our first proper conversation when I was about 18 and was intrigued to discover that the way he framed his ideas seemed very similar to how I thought about things - even though I had never heard him talk about how he saw the word until then. I have since observed we are very similar in lots of other ways (although I did not have the early developmental difficulties he did).
With regard to getting diagnosed as a child and receiving help, I think understanding and kindness are very important to helping people with Autism – but I also think its never to late to make up for experiences you need and haven’t had yet. Having said this, It seems to me that the whole area of Autism is still so poorly understood that the people who have it or are studying it are still in the pioneer stage – we are currently defining what it is and how best to help ourselves.
It can be both painful and confusing to be a pioneer, but also very interesting! I read an excellent article in The New Scientist just today called “The Thinking Body” which I thought had some really useful information which could be applied to Autism – I’ll aim to post it in a week when I’m back online.
Having said all this, I am fully aware that knowing about AS is not the same as being protected from its effects. I am off to Spain tomorrow to see my mum. I organised the trip for myself and 4 others. This is not my strong suit and I have spent the last week in an extended panic that lead to me having an epic meltdown last night. It was so bad I was having thoughts about it being too painful to live. I also briefly considered breaking up from my fiancé and having myself institutionalised!!! Stress is a terrible thing...
Luckily I was able to sleep on it. This morning, after a tetchy start, my fiancé was able to help me slowly work my way out of the mental riptide I had been caught in and to reboot myself emotionally. He started off by asking me what I needed – I’d forgotten I done this, but some time a go I warned him that when I’m having a meltdown I can’t answer complicated questions about what’s going on or why I’m having problems and he should just calmly ask me what I needed. So he did, and it helped focus me and calm me down a little. Then we used the IChing.
I don't know if you know much about the IChing but I would recommend it. Its a book of hexagrams with different meanings attached - I use marbles to select the hexagrams. The book is based on the Tao - i.e. the idea that there is a deeper meaning to what is going on in the world and that you do best to follow the "flow" rather than fight it. The way you use it is to ask a question, create your hexagram, and then look up its meaning. The text attached to the hexagram gives you a framework for where you are in the flow.
My fiancé introduced me to the IChing last year and since then I have found it an immensely useful way of accepting what is going on - no matter how unpleasant - and connecting with life in a way which allows me to trust it and find meaning in it.
I still struggle with people. I don’t have any close friends just now – I find it too tiring to keep those kind of relationships going – so I am just concentrated on my family and my fiancé. I do hope to progress to the stage where I can not only have a fulfilling career but also maintain proper friendships. Small steps though. I have made many changes in the last 2 years to make my personal life better, and I’ll keep the rest as something to aim for.
X
TP
I have a couple of questions for you. Where are you from, when did you learn about Asperger's, and what was the "light bulb" moment when you realised you had it?
x
TP
Hi Anneyce,
I am relatively new to Asperger's, although it has already been a life-altering discovery for me. I have not yet received an official diagnosis (I'm working on it) so I don't yet feel ready to share it with too many people. Once I have a diagnosis I plan to share it widely because I want to raise awareness - but I wouldn't expect everyone with AS to feel comfortable doing so. I therefore think you should go with your own feelings on the matter of who to share your AS with.
I would say that choosing not to tell people you have AS does not mean you can't share with them what your needs are.
Now that I know why I find some things harder than most people seem to, and I know that it isn't that I'm bad or stupid or just not trying hard enough, but that I have a genuine difficulty, I find I'm a lot more forgiving with myself. This has allowed me to be less worried about asking for help or more time and space when I feel I need them without worrying whether those needs will be perceived as normal.
This has effected the way I relate to people at work in a very positive way. But a great concrete example of sharing (in what was for me a very trying environment) was a recent visit to the Drs to get a smear test.
The nurse had a very strong way of expressing herself and became extremely impatient with me when I couldn't tell her the exact date of my last period. I had looked at the date on my calendar before going to the appointment and was trying to sit still and visualise so I could give her the info (numbers don't stick in my head at all). Rather than allowing me time to answer the nurse kept badgering me and muddying me by restating how important the answer was and by steam-rolling on with further half questions which increasingly seemed to contradict what she'd said earlier.
Aghhh! I decided to take some control of the situation.
I calmly apologised for not checking with the receptionist what information I should bring when I booked the appointment. I then explained clearly that I'd looked at my calendar before coming and was trying to "see" the answer but that I found remembering dates and numbers difficult and may need a bit of time.
She quietened down a bit. She didn't give me a chance to do my visualisation and instead accepted my approximated answer so we could get on with the test.
Well, with a bit of internal clunking I accepted that as her choice and decided to go with it.
I didn't explain about the AS, but knowing about it myself I felt a lot more comfortable just stating what was going on with me at that time - which was successful insomuch as it promptly ended the nurses impatient barrage of words!
Even before I knew about the AS I have often noticed that the world can be a very forgiving place. People don't necessarily need reasons, but if you can tell them calmly what your needs are they will often shuffle up and make room for you.
The difficulty I had before I knew about the AS is that I felt my needs were often so strong, so out of kilter, and so shifting, that I felt embarrassed about trying to describe them - and often exhausted just at the prospect.
Knowing about AS has changed that for me. I feel like I'm allowed to be who I am now and express my needs as they are.
In circumstances like the one above I would say that my feelings as to "why" I am the way I am were not actually relevant, and are really no-one else's business unless I choose to share them. It seems to me that most people prefer to operate on a "need to know" basis anyway. If you Keep the "what" simple then they often have no actual desire to know the "why". They like it when things are simple.
This seems incredible to me! I always want to know why! But listening to and respecting other's needs is a two way process, and I'm learning to respect the NT preference not to receive absolutely all of the available data in any given situation. :)
I'm sorry if you found this over-long or too personal in places. I hope it helps in some way. Good luck!
x
TP
If you're not in your element, then you're the ambassador for it.