Involvement of family- adult diagnosis

Hi Belles. Your last statement was very interesting. I've also been reading your post about work difficulties. These are things that I relate both myself and my sister.

I'm incredibly wrapped up with some other stuff today so still can't answer you. I like to have no distractions when we discuss these things or I can't concentrate enough to be even semi-literate!

Thank you for staying with me on this

Hi,

Thanks for sharing these memories of her.  It sounds like she created her own haven like you say, which of course can be very important to autistic people, perhaps more so women....

I look forward to reading anything more which you wish to share.

Best wishes

Hi Belles. Many thanks for that. I had to seriously think back to those memories I retain of her as a teenager. Interestingly, although I was 4 years younger than her and lived most of the time in a vague fog, I realised just how many clear memories I have.

The things you say about your friendships remind me that she was much the same. She had a few good friends, one in particular, and didn't sem to socialise much beyond that. She got her first boyfriend at 16, and between him and school, her friendships seemed to just grow more distant. I can see now that this held true in another way throughout her life. She would find a friend, it would be intense for a while, then their friendship would dwindle away.

She moved to a fairly quiet and quite rural town, to an old farmhouse that was reasonably isolated. the nearest neighbour was the next farm, half a mile away, and it was her haven. She sought peace and solitude. She might well have someone visit on odd days, but she didn't often go out to visit. She didn't like pubs, she had a real issue with being seen eating in public, and she felt a great urge to make and keep her home environment perfect.

Her cleanliness and tidiness were exacting, but her home was always made beautiful, although she rarely spent money to achieve this. Her artistic talent was expressed mostly with paint/pencil/canvas/paper, but she could also arrange some dried twigs she'd collected on a walk, and make them 'perfect for that place' wherever she chose to display them. Her tastes in display objects were eclectic, but selective.

She could never see that she had any particular talent. In fact, she often said that she envied my use of language, insisting that I could do with words what she could do with paint. I never got that.

I have to recall our home environment, which wasn't great, then, if I compare my memories of her and combine them with my new knowledge of being AS, and I get the right prompt from the things you say, I'm looking at how I would display an AS trait, and how she would display the same one.

My sister learned to play 'cute'. She would would hold her head down, and with a 'cutesie' half smile, look up at people from under her eyebrows. I always had the feeling that she was deliberately using a learned behaviour to be appealing, and additionaly I now think this was her way of reducing 'eye' contact', although I don't think any of it was a conscious act. She was encouraged in this behaviour by our parents because they thought it was wonderful to have such a cute little girl, and that's what I mean by the contribution of the conditions at home.

I'll be thinking more about those comparisons, and I'll be sharing them with you shortly. Take care.

Hello,

Sorry I haven't replied, time seems to have passed incredibly quickly of late and I didn't receive any notifications of responses and forgot to check.  

Yes, I very much hope for a diagnosis.  It seems to make so much sense of everything that has ever happened to me, and the way that I am (as you also mention).  I know really that whether or not I have a formal diagnosis that I certainly have traits, and I suppose in some ways that is enough to help me to progress using books etc on the subject.  In other ways though I would like to have a diagnosis to see if there is any related help available, and also I may decide to disclose this to family.

I am glad to be able to help you to understand how your sister was.  Yes it is very interesting to read about your experiences and debate the ins and outs    It also helps a great deal to read about other people who have had similar experiences, to make me feel less lonely in my struggle to understand myself.

I see what you mean about little boys, and for some reason find this easier to understand than girls actually.  I think that some girls can look after others, who are perhaps less socially able than themselves, and may 'mother' them.  I had a best friend throughout childhood who was more like a sister to me, as we had a very intense friendship.  When we got older we began to argue a lot and eventually drifted apart, but remained friends and she often included me socially as we got older as she was able to socialise very well.  Therefore I was able to create a few good friendships mostly through this, and learned skills from her too.  I never really felt part of a group as such, and so when I was without a best friend in my later childhood, I began to feel depressed.  Sorry but I am not sure apart from this about other girls, I wish I could be of more help.

I think that you are right, girls are much more open about their emotions generally, and actually I managed to sustain friendships despite talking at great length about my feelings and anxieties, which was something my friends didn't seem to mind, as perhaps many angst-ridden teenage girls do this anyway (excuse me if this isn't clear, I am not sure how best to phrase it). 

In terms of camouflage tactics, it is hard to say as I don't remember very well and a lot of how I felt just feels like a black hole in my past, but I will try to say what I can.  I was told to smile to show that I was happy (which I wasn't!) and to make eye contact.  So I tried to do this.  I can't imagine this would have looked natural, so perhaps a telltale sign to an expert.  A lot of the time I just stayed quiet, as I learned that it was sometimes easier.  I can't remember that well but I think I have learned to apologise for certain behaviours without really understanding why (something I still do now or apologise inappropriately and someone points this out).  I still have gaps in empathy now when I feel delayed 'learned' responses that are not automatic or inappropriate for context (eg. not saying the right thing and then rethinking and going back to correct this, apologising), but again I can't remember from childhood but imagine this may have been the case.  I now have what is apparently a convincing act, based on a childhood friend that I admire, which works superficially for a short while to convince people I am 'ok'.  I actually learned to imitate her gestures and learned when to smile from her, but only recently recognised this in myself.  I was very disinterested in my appearance as a teenager, and looked quite androgynous until I was picked on for this and began to copy what others did.  The androgynous image I had is nothing like how I present myself now, again in an attempt to make myself more socially acceptable and squash the 'old me'.  I think girls are very good at imitating to try to be social, in many different ways, and people like me who had a few friends were able to get advice on this.  I imagine this is not so for boys.

I am not sure if this answers your question.  I look forward to any further responses.

Thanks

belles12345 said:

  I don't want to involve my family, for personal reasons.  The psychologist said that they will skip that part and go onto the subsequent part of the assessment, however if they haven't got enough evidence (apparently my signs are subtle), they many need to speak to a family member.  

I am aware that there may be other instruments they could use, but I have not been advised of these.  Is it the case that sometimes family must be involved (ie. when the outward signs are subtle)?

Hello Belles12345

I think that anyone who knows you really well and can provide information on how you exhibit the behaviours the assessor is searching for might do... after all sometimes it is not possible to have blood-relatives present.  

Under the pressure of the assessment situation you will exhibit more revealing behaviours than in everyday life. All that 'subtlety' will be gone.
I am female and an Aspie, and 'coped' and 'masked' the condition as best I could in my everyday life, for decades. But I can honestly say that on the day of my assessment I was the 'worst' I had ever been, because of the pressure of the situation and the significance of it. For those few hours my masking and coping strategies just fell away, revealing 'Aspie Woman'.

I was insistent that none of my 'family' were to be present and none were, just my partner of five or so years. I also had a friend of twenty years on standby incase more information was needed, which it wasn't. 

The assessment is a worrying time - with all that uncertainty of outcome. I wish you well with the process.

Hi Belles, I'm back in the room. Before I go on, could I ask you to take a look at my entry in the thread about suicide risk in abler adults?

I totally understand why you are anxious about your assessment, but I honestly can't see a reason for you to be. Even without a family member, your condition can be assessed, and you aren't likely to adopt any camouflage tactics that will hamper the process. It's already a known quantity that they will take into account.

Wow, you said a lot back there, I was absorbed by it. What got me mostly was just how close and alike our experiences are. Appreciating that you're still undiagnosed, it was like reading a post from someone who has already been identified as ASD, and I respect your opinions as such.

I understand how it is for you, because I too have experienced the welter of unanswered questions we create for ourselves when we start trying to make sense of anything. I think that your diagnosis will be affirmative, and will lay many of those questions to rest.

You seem to be anxious for a positive diagnosis, so I guess that you've already read enough to identify yourself. I felt like that too, once I was pointed in the direction. It suddenly struck me that here at last could be an explanation for everything I've ever experienced, felt, thought about and processed, and yes, it has been.

The funny thing is, I thought that the diagnosis would be an end, but it was actually the start. Of me.

My sister was an artist, never very good at sustaining relationships, preferred to exist in her own, totally controlled and idealised environment, and you've made me reappraise everything I remember about her in light of what you say. People often mistook us for twins, we were alike in EVERY way. In fact, we were the only two people in our world who could talk to each other, and we were very close. Please don't be surprised if I say that talking with you is like talking with her. It's kind of nice for me, so I hope you're getting something out of it too

So we come back to the question, why aren't girls so easy to diagnose?

Little boys start competing at an early age. When boys form a group, they have a common aim. Each member understands the benefits of working as a team to pursue an aim, but each one wants to be the one who beats the others to it. It might be hunting and killing animals for food, and the competition is to be the one to kill it. it might be working as a football team, the competition is to be the one to score the winning goal. War is like this too, it's the testosterone. It's quite a linear process.

Little girls start co-operating in a different way. You are better placed than I am to say what it is, because you know what the group dynamics are, I don't. It seems to me, though, that the aims of a group of girls are different, that the process looks like a spiderweb, and that winning the competition requires a much more subtle approach based on a far more patient strategy. You can help me here.

Now, in describing yourself, you seem to understand that this was going on but you didn't quite have the exposure within the group so were able to adopt a fairly successful camouflage.

For my part, most of my camouflage has been to mask the depression, anxiety, powerlessness, feeling victimised, abused and neglected. These are the more 'emotional' effects that boys don't like to display, but that girls are more likely to be open about.

If we stipulate that ASD boys' and girls' experiences of the condition are the same, then can I suggest that perhaps the best way to 'spot' an ASD girl is to be able to spot the camouflage tactics. So I have to ask you if you think that, looking back, you could say that there were some things that you did that, if seen by a trained observer, might indicate an adopted ASD camouflage tactic?

Or are we asking the wrong questions.

One of the reasons they like to have family input in the diagnostic process is so that they can identify whether you have been like tbis all of you life. ASD is a lifelong condition and if you have only shown signs recently then it is less likely to be ASD.

Unfortunatley parental evidence can be unreliable for various reasons. Rose tinted spectacles being one but ASD people often have ASD parents and their views can be skewed from normal. Of course, it may be obvious, to a doctor, that this is the case and it may strengthen the theory that you have ASD when a parent with obvious ASD attends too.

Family or parental evidence is not essential, many people like me are too old to have living parents and it wasn't a problem at diagnosis.

Hi Belles.

I'm sorry I've been unable to reply, a friend passed away this week and I've been upset. I'll come back and continue this in a couple of days, if that's OK?

Sorry after posting I realised that I tried to answer the question that you posed:

If 'girls' tactics are known, do you think that there's a way to differentiate between 'copied and repeated' behaviour in Aspies, and 'learned how' behaviour (sorry, I'm struggling for the question and trust that you understand what I'm asking) in non-autistic girls?

Thanks for your reply.  

I also much prefer to write than speak, and writing can come across as very fluent whereas speaking is another thing altogether.  I seem to either ramble on (if something I'm interested in/obsessing over) or find it hard to find the right words and even make conversation a lot of the time.  It's nice to know that there are others out there like me!  I would hope that if I gained a diagnosis then I would meet some people who are similar to me.  Have you had any experience of meeting people post-diagnosis?

It's very interesting to read about the way that you describe rituals and routines.  This was quite a mystery to me.  I struggle with new places too, but more because I don't want to meet any new people or be put in any situations that place too many demands (which often doesn't take much) on me.  I feel uncomfortable with change a lot of the time, again due to uncertainty and a need to control.  I think that as long as I feel in control then it reduces my anxiety, and looking back on my behaviour as a child it was very control-driven.  As a child, I often lived in a fantasy-based world, and perhaps this explains why I am still very dreamy.  I get distracted by light/shadow/patterns a lot, often without being aware until someone comments on it, and wouldn't even notice objects etc. moving as I am completely distracted by something sensory related.  I don't know if it is a female trait, however I have read that many autistic girls live in a fantasy world, and are also often good artists. etc.  This follows with my skills, and is very far away from the stereotype of a boy who loves collecting information related to trains.  Sorry if this is an inaccurate, vast generalisation but it would be an interesting point to research.

In my experience and from some research, it seems that it is not uncommon for girls to try to control situations or people to try to cope.  In older girls this reportedly shows as eating disorders, and other signs eg. anxiety, low self-esteem, depression.  In younger girls I am not sure, for me this showed in terms of gaps in social knowledge and empathy, which resulted in often arguing with others, obsessive contemplation of troubling situations as I was trying to make sense of behaviour, agressive behaviour and screaming tantrums.  Looking back on my behaviour, I was seen as an awkward child by my family, who tired of my difficult and sometimes horrid behaviour.  I can now see why I was branded as such but also realise that I needed some support. I imagine that all autistic boys and girls will show their difficulties in some way, whether at home or school.  It would also be interesting to compare the behaviour by both.

I also find this topic very interesting.  I dream of finding ways to raise awareness of these difficulties and the negative impact they can have.  I would be interested to hear anything else you wish to share.

Thanks!

Oh please, take as long as you like, you're very interesting to read

The 'struggle' you describe is a common one, I've found here, especially when we've been able to 'mask' it with adopted behaviours, or at least we think we have... Generally, awkward (I've been labeled 'clumsy') is an ASD sign, and the innability to read other people is a prime indicator. It's really nice that you are happy to be on the road to diagnosis, because finally getting an explanation for those unanswered questions was, for me, liberating in ways I can't describe. I really hope it's the same for you.

I don't know about you, but I find that I prefer to talk in writing rather than have a voice conversation. I have time to think about the question, and do my best to give a full answer. First I write it down, then I edit and shorten it, so sorry, this IS the short, edited version LOL!

About 'rituals and routines'. It is very important to me that things don't change. The more familiar I am with something, the more comfortable I am with it, but the picture must look the same as last time or I am disturbed untill I can spot the change. The counterpoints to this are that if things change (and we can spot very small changes) I am made uneasy, which itself becomes a major sensitivity. Also, if things aren't as or where I left them, I'm immediately put into 'the zone'. Lastly, I always struggle with new places (the ones I can't avoid) because of their unfamiliarity to me, and it helps take some of the lonelyness and fear away if I have someone with me.

This 'picture' is firmly a photographic memory issue, in my mind. It's an ancient 'navigational' instinct if you will. Humans explore in order to know what's further out from our social group and hunt for new resources, so it's in our nature to explore and the important thing that we do is create 'mind maps' so that we can find our way back again. Men and women do this differently, but we both do it. It would make sense that some people would be better at this than others, so it follows that human evolution has led to people improving their memory skills, right up to 'photographic' memory. ASD is a scale, and so are its' elements. You might think of it as being a 'good' memory without knowing where on that scale you are.

So, I take your point about the conditions that make female diagnosis so much more difficult, and I wonder how we can address that? If 'girls' tactics are known, do you think that there's a way to differentiate between 'copied and repeated' behaviour in Aspies, and 'learned how' behaviour (sorry, I'm struggling for the question and trust that you understand what I'm asking) in non-autistic girls? Have I even asked the right question?

You got it exactly when you talked about the results of not knowing ASD women. I have the same issue, in our way, with my sex. I think that there is a general communication issue for Aspies and we need to throw this kind of stuff around between us quite freely. It's especially good to talk with some common aims and understanding, and that's why I value this conversation with you.

Thank you for sharing.

That's fine, I wasn't offended.  The opposite, I am grateful for your input and interested to read your comments.  Yes, I am interested in this issue, both for myself and others, and do also feel strongly about it.  

For me this has helped me to 'fake it' so I that am employable, which is clearly a huge help at least in getting jobs.  In the social area this has helped me somewhat to appear more social, but can also disadvantage me as others don't understand how much I am struggling (I am usually just seen as shy, and my family can't quite understand why I don't just socialise more).  I think that as Attwood mentions, the effort of putting on an act is exhausting for many women on the spectrum.  I also believe that women have much higher expectations to perform socially, and that the social domain is generally much more complex.  For example women tend to be more deceiptful, are nasty about others 'behind their back', and in my experience are generally very hard to read, trust and fit in with.

In my opinion and from research, I would say that there are many factors that affect a different manifestation of autism in some women.  For example, many (as did I) had a 'best friend' in childhood.  This friend then assisted me to fit in to some extent during my school years, which were hard but I wasn't isolated.  However once I was away from the structured, supported environment at school I really started to struggle.  University was a whole new and more complex social environment, and work has gone on to be even worse.

Again, from my opinion and research, I believe that the ritual/routine part is also less obvious in girls, and may be linked to the fact that we sometimes have 1 or more friends.  Or perhaps it is just different in nature, I am not really sure.  Therefore I have asked myself if a social communication disorder that I have read about is not more suited to people like me, as I have read that it doesn't require a ritual/routine element.  However this somehow lacks the image of being as severe as autism and so may not be taken as seriously or support given.  I don't know really.

I imagine that regarding reading partners that this varies.  Is this not dependent on the level of difficulty reading subtle cues?  Personally I feel that I am rather weak on this.  I don't know of any other women on the spectrum to be able to comment.

Other than the ritual/routine part of the diagnosis, I feel as though my complete lack of understanding in most situations is evident (although actually a lot of the time doesn't seem to be clear to others, I imagine an experienced diagnotitian should be able to see how hard it is for me).  However I do understand things like metaphors, in fact quite well I think.  Again this clouds the fact that I take a lot of other language literally, but once I am used to a particular saying, I soon pick it up.

I am happier to be on the road to something, however as you can see it is leaving me with many unanswered questions.  I think it is part of putting a jigsaw together of how I see myself and how others perceive me.  Until recently this was very different.  I am still struggling to understand whether I am truly autistic or just incredibly awkward and without much social ability to read others, use language in social settings,etc.  In fact I never even considered the possibilty of being autistic until I read about autism in girls, and there are so many stereotypes around about what autistic people (both high and low functionning) are like.  Whatever the case I certainly feel that I need a diagnosis of some sort, and I wonder how many girls and women out there are like me and also want to understand why everything is so hard.

Sorry, this is quite long.  I would normally edit or shorten my response so as not to be boring (another adaptation to myself in an attempt to be social- very hard to do when speaking!) but I see that you are also very interested in the topic.

Is it the case that sometimes family must be involved (ie. when the outward signs are subtle)?

I'm sorry, I was trying to help with your question. I think that what I'm saying is that it seems to me that 'subtle' always applies to female diagnosis, and I really want to help to address that issue because I think it is very important, and I hope you do too.

When I read Tony Attwood on the subject, I was already bearing in mind a post on another thread by a woman. I was very interested to note that her tactics for dealing with some 'social' issues were the same as mine, observe, copy, try to fit in but hang on the periphery for the lowest possible exposure. She says that this strategy has helped her, I'm afraid that I can't say the same for me, except in a very limited sense.

I then find that you both say much the same thing as Tony Attwood, in that women are considered to adopt a 'camouflage' strategy but men either don't, or do it to a much lesser degree. I have to say that I find women generally to be very good at practising deception, and the women friends I've asked, agree, so it would appear to be a firmly gender, rather than Aspi, issue. But, I also think that both genders of Aspies have an extra need for privacy and tend to hide away as much as possible - it's the 'exposure' thing I guess.

I've seen other research results that at first seem irrelevant, but actually illustrate something for me about gender differences. For instance, in a study of infidelity, it was noted that men could hardly ever tell when their partner was having an affair, because women are good at concealment, whereas women found it 'obvious' in their male partners.

I'd be very interested to hear what you think about this. I'd suggest that if it's true then women Aspies can maybe help the diagnosticians get better at digging away the 'subtlety'. I know what it's like to suffer as undiagnosed, as do so many of us, so I want the diagnosticians to have the best and most effective tools to use. Diagnosis IS getting better, and the earlier it is detected the better for the person, as we all recognise.

I think it must be very hard on you at the moment because you don't want your family involved. I think that there are Aspies with no choice because they don't have any family to feed in to their diagnosis, so the personal assessment is vital to such people. You don't want your family involved, and I think that's fine, so I also think that the diagnostic tools should work efficiently regardless. I don't have family to feed in for me, but my diagnosis didn't seem at all hindered by the lack.

I think my sister was an undiagnosed Aspie, but I can't test it because we lost her a few years ago to cancer. I'm left to evaluate my memories of her in light of my own diagnosis, and taking into account the views of other Aspie women is really helpful.

I resonate with your confusion. Because you've been left in an information vacuum, you're left to guess at their reasons, and I don't think they realise the impact of doing so. You are much happier now that you're on the diagnostic ladder, so I wonder if you feel strongly about this issue as it affects female diagnosis?

I got the impression that it was 'subtle' from a diagnotistic point of view, ie. difficult to fulfil the criteria without further evidence.  I think also 'subtle' in that people often do not recognise my difficulties as I try very hard to engage as I am expected to, which I have done through watching others and trying to imitate them (poorly).  People are often friendly to me initially and I can come across as socially competent for a short period, only to back off when I have exhausted my superficial strategies.  Perhaps this is what they are referring to, although I believe that I would have enough other struggles after this point to get a diagnosis.  So I imagine it must be the rituals/interests that cloud the diagnosis for me.  I have no idea what they require for this part, and whether any discussion with family wouold help anyway.  An interesting discussion though.

The NAS website uses the word subtle with regards to diagnosing women:

www.autism.org.uk/.../women-and-girls-on-the-autism-spectrum.aspx

Sorry, this is a bit long. It's not like an Aspie to go into details....

OK, I get what you're saying. I've read that it is a different matter for females, because of the way you deal with things, but sorry, I'm a bloke and sadly I haven't yet met enough confirmed Aspie ladies to even begin to get a clue! Of course I'm going to pick up on the precise use of language, I'm an Aspie! I'm sorry if this threw a spanner in the works.

If female diagnosis has to include these essential differences, I think that I would expect diagnosticians to understand this very well, and therefore I'd think of it as being that the signs aren't so much 'subtle' but simply gender affected. I haven't asked, but it may be that a family member's observations can be more significant in female diagnosis for these very reasons, and now I'm going to have to try and find out.

OK, done. Tony Attwood in his 'Complete Guide to Asperger's Syndrome' p.58-59 says that he finds girls to be able to 'camouflage' their difficulties. It seems that he isn't saying that the signs are subtle, they're the same but better hidden by other adopted strategies. I guess I reacted so strongly to the innapropriate use of the word 'subtle' because it might give you the impression that your condition is less serious than others, which is kind of pre-empting a full diagnosis - you could be both severe AND good at camouflage!

You don't have to involve your family if you don't want to. I don't know your circumstances, no-one does but you, so it's your choice. Happy to talk about that if you feel like it, it's also OK if you don't.

Whether you involve family or not shouldn't affect your diagnosis, but it's extra assistance for them in making one, that's all.

I think they meant subtle as in I don't display obviously rigid etc. behaviours, rituals etc... perhaps in the way that apparently females do not always display as obvious outward signs.... I can only guess that this is what was meant.  But there may be other things as they didn't specify.  I can only hope that they can make a diagnosis and not need to get in touch with my family as I may not go ahead.

It isn't essential, but it can be very helpful to hear from a family member who can describe some of your behaviours from their point of view.

I'm not sure about 'subtle', but ASD is a spectrum and outward signs don't always express the inside stuff.