Struggling with niece with autism

Girls are stronger emotionally at hiding autism to help them 'fit in' into society which may cause this which is hard to deal with, I have 4 siblings on the spectrum so i understand. My sisters copy things they watch on youtube vlog (a vidio diary) which may help her to see how to communicate with people. Seeing a lifesytle coach can also help, they can find what she is actually feeling through activities and helps them to deal with all kinds of stuff and can feedback it to you.

hi

I wondered if your niece has had any kind of grief counselling which might help her to come to terms with her mum dying? 

My teenage daughter didn't get any kind of counselling when her dad died several years ago, and it was only last year that the camhs practitioner suggested it would be a good idea, and my daughter saw a bereavement counsellor for almost a year, about every 6 weeks, and I would say that was a big help for her.

Hi

I would like to say well done you for taking in your niece - not an easy decision at all and one that, with ASD or not, would have a huge effect on your whole family.  I'm not an expert by any means (my 15 year old daughter was very recently diagnosed with ASD after years of self harm, anxiety, no friends, depression etc), however it does sound like your niece needs some support.  It's no wonder after what she's been through and would be difficult for anyone to cope with.  I definitely think that you should read up all you can on ASD as I am only on my third book and already it's helping, as more than anything I don't feel so alone in my struggles to help my daughter - there are millions of us doing all we can and it is hugely stressful.  Unfortunately, (for me anyway) there doesn't seem to be any structured help at all out there for those diagnosed later on in life.  My daughter has visits from CAMHS, a Youth Worker, a tutor 3 times a week at home, but none of them know about autism or how to interact and get my daughter to engage or to help her interact socially.   I agree with a comment above that it would be easier for you to ask your children to learn how to cope with your niece's looming and for you to relay to them some of the information that you read about ASD so they get a little understanding of what it's like to be her. It can be a lonely place when no-one understands how you feel and you can't tell them.

Lots of questionning about what's wrong may only confuse her too (my daughter hates constant questionning of how she is and how she feels).

It's really good that she is happy when working and being with children as she has a purpose.  Children aren't as socially demanding as adults so she will feel more comfortable with them.  My daughter loves animals and younger children but just can't get on with kids her age and never has done.  I do think though, from what you say, that she would be fine living on her own - maybe with a little support.  People with ASD find it extremely difficult to identify and talk about their feelings with anyone.  If she won't go with you, maybe just go in and see your GP yourself in the first instance to see what they can suggest or call the NAS number.  I haven't yet but will be next week as I just need to talk to someone about how I feel.  I'm also going to find some local support groups in my area as I want and need to talk about how it affects our whole family and get tips from other parents and carers on what else we can do to help everyone involved.

I hope everyone's responses have helped even a little bit.  Sometimes just knowing that you're not alone and talking to someone who actually understands ASD can really, really help.  Take care x

Firstly the eye contact thing. This seems to be misunderstood a lot. The medical profession looks for gaze aversion (purposefully looking away, or downwards) but doesn't understand that, if you are constantly being told to look someone in the eye, or look at someone when you are talking, you tend to attempt to meet that requirement just to escape the nagging.

The trouble is appearing to make eye contact isn't the same as doing it. The purpose of eye contact is to convey to the other person you are genuine, can be trusted, and are paying attention. Non-autistic people seem to do this with ease, the right amount and the right way. But what people miss is that it isn't just about eye contact, it is about watching other people's facial expressions, head nods, gestures etc., which non-autistic people use to give an accent or qualification to what they are enunciating through speech. This performs what in texting is supported by emoticons or smilies.

People on the autistic spectrum cannot read the expressions and gestures properly, if indeed they see them (nor can they produce the right facial expressions and gestures), and they certainly cannot use eye contact productively, even if it might seem they do.

Most people on the spectrum (to the best of what I can gather - there isn't much published about this) look at anything but the eyes. Often they look at people's mouths, or their chin, throat, an ear. Speaking personally I invariably look at mouths, just as distracting and off putting and its not as if I can lip read.

The upshot is your niece is getting little feedback from facial expression and gestures (and not giving appropriate facial expressions back). She depends on speech and interpreting speech only, which leads to misunderstandings. So she 'looms' waiting for some sort of cue to speak, or for someone to speak to her.

Initiating conversation can be difficult, especially if regularly rebutted for raising inappropriate or contrary conversation,and not being in step. So she may well loom silently, being both lacking self confidence and lacking the usual feedback of how people are reacting to her.

Provided with a role, she may be much more communicative because she can work to familiar frameworks. The difficulty is likely to lie with casual informal socialisation where facial expression and gesture are so crucial.

This also affects gaining and retaining friends. If you cannot do the social interchanges properly and fit in you don't get accepted, and she may suffer exclusion for being different or not having enough in common to engage in the right way.

Being inclined to playing anthropologists with NTs, I discretely watch groups of people to better understand the dynamics. Young people are particularly good at visual effects - as you get older facial expression gets more restrained. I find it amazing how wide-eyed or gazy young people are when trying to interact with someone else. A huge amount of socialisation in teens and early twenties is largely visual rather than verbal. At twenty she hasn't a hope in such situations.

I have to be cautious therefore about encouraging or helping her to engage in social activity. It may just reinforce the isolation and the pain of frequent rejection and exclusion. I go along with other replies in encouraging to read round autism so you better understand the difficulties.

Expressing emotion is also very difficult for someone on the autistic spectrum, and bereavement particularly can be very difficult. If you don't have the social exchange facility to give or receive comfort, you end up locking it in not knowing how to express it. So this is a difficult subject but there is a lot written about it.

Firstly, well done for taking your niece in, and some good suggestions from others here.

Re your concerns, I think most people would be incredibly stressed by the events that she has had to deal with - losing a parent, then being taken out of her familiar surroundings into a house that probably doesn't feel like home, starting a new job, and being expected to go out and make new friends on top of that. What she has gone through would tax the most sociable NT, and (although it may not feel like it to you!) it sounds like she is coping pretty well. In that situation I would probably go to pieces, or hide in my room to avoid having to talk to people.

She may be picking up on other people's attitudes towards her, feeling unwanted and terrified that you are going throw her out. Her 'looming' sounds understandable, if she has nothing else to do around the house, and is shy. 6 months is very early days, and IMO the best thing you can do is reassure her that this is her home, that it is OK to just "be" and she doesn't have to make conversation constantly. You will probably find that once the pressure is off, she opens up more.

Instead of pushing her to talk about her feelings, maybe you could find some projects for her to get stuck into, so she feels useful. Not everyone deals with bereavement in the same way - I found DIY and gardening more therapeutic than talking, and have always preferred activities that involve making and doing rather than just socialising.

Re feeling responsible for her, it sounds like she will be perfectly capable of living independently at some point, given she enjoys working and has been helping with the other children. She may thrive on being given additional responsibilities, and if you can work with her strengths rather than expecting her to be like your other kids, she could turn out to be a caring thoughtful big sister to them whose different outlook on life is a positive influence.

I have always struggled with social conversation myself. I never know what to say. It don't help me that also hard of hearing too. Soemtimes conversation just comes out and they almost can't shut me up  and other am stranded. I hate the coffee morning situation and even when I am being 100% included I can go home feeling very isolated. I only been diagnosed last year so now can work it out for myself but it doesn't make it any easier not really. I think what helps is people around us being understanding. I don't think you can 'educate' your niece not to loom as such. I think it be easier if you eduated your daughter to cope with it better. Your niece may not be wanting anything. Just simply don't know what to do and 'looms' She looms to your daughter because of she is who she is with as such?  I will never start a conversation. If I have to give a message to someone I am okay if I don't think about it, but if I think about it, I write it down or find other ways to get that message. I depend on others as such for conversationalness. Early on this month I was in Church and the priest needed to go and pick his daughter up. He told me I didn't have defend the church just run up to  the police station, nearby. But didn't tell me someone might come in wanting to book a wedding of which by chance am familiar enough with. But if he warned me I would have probably gone.  As it was two people came in and because they were quite chatty and I could tell them things about weddings and he came back before they actually left. But if he had hinted that could happen I be more affraid about worrying about it. Looming may be simply that she doesn't know what else to do and need that little help of being involved.  You would have to find a way of talking to her and it can be possible as they other priest has proved to me totally unawares. He can get me to share when something blown up in my world. He been the only one to do so. But we can talk about what it is, with the right approach and I couldn't tell you that either. I am in my 40's. It taken a long time for someone to get me to actually say the things am thinking. 

Hi, big changes for all concerned over the last 6 months.  Your neice may "loom" as you put it because she doesn't know what else to do, conversation etc may be difficult for her.  It's likely from the sound of it that she doesn't realise about people needing personal space.  Verbal + non-verbal communication will be issues for her to some degree.  Have you been able to spend some time getting up to speed about autism + how it affects her personally?  If you can, it's something that should be done.  This will help you in understanding her + also help the rest of the family to understand her better as well.   There's loads of info via the home pg + the posts so have a look around.  Taking it in in "bite size chunks" is best.  There's a lot to learn.   You should contact CAB or Welfare rights (council offices) to see about claiming benefits for her, if she isn't getting any or only some.  It is difficult if she thinks she isn't autistic.  Perhaps she doesn't want to be  or genuinely believes, thru a lack of insight that she isn't.  I would also contact social services to see what Adult services they have on offer.  For example she may be eligible for a support worker supplied by an approved agency who could go places with her or help in a number of ways.  Whilst she may be unable to live totally independently, she may be able to live in her own place with a level of support by an agency.  Perhaps she needs another needs assessment via social services?  Also you could claim carer's allowance.  Just a few idea which I hope might help a bit.