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Sibling issues/autism/ghosts of past

(30 Posts)
elementofsurprise Fri 25-Dec-15 22:33:12

Not sure if mental health or ASD forum more appropriate, but it's going here for views and its relation to Christmas! For thoughts and minor hand holding...

<pauses to get glass of red>

Ok... I'm certain my brother is on the ASD spectrum. Absolute classic, I'd say. Various elements of this caused problems when we were growing up.

I also suspect I am on the spectrum. However in a less obvious way. I have MH issues and have felt odd/depressed/struggled with things all my life, I suspect ASD is at the root. Anyway, when we were growing up I found his behaviours really affected me - eg. he'd hammer on my bedroom door to wake me up every morning, sounded like police, gave me a nervous reaction to sound of feet coming up stairs! Also his specialist subject ravings or rants when the world frustrated him I'd want to scream "shut up!" but also felt so protective so simultaneously despised myself for being so annoyed with him. I internalised a lot cos I find it hard to speak up or put into words, I want to just put my hands over my ears and scream. This is a good example of our issues colliding - but weirdly I think they're both ASD issues! So first query is, any thougts on that? Do people with ASD present so differently they affect each other so much?

The other thing... my brother is not normally around at Christmas so the difference in dynamic was obvious. I could tell our dad was on edge too and there was a row that was unrelated but I swear caused by the general stress. Things were very fraught when I was growing up and the volatile atmosphere clearly led to anxiety attacks and what may actually have been silent (well, hidden away crying) meltdowns for me. This has affected my life so much.

I feel so upset about it all, and so annoyed with my brother. And guilty for feeling like that. But it sort of fell into place today, how much my issues are indirectly due to his - due to his contribution to stress levels in the past. But he's basicaly fine - a lovely wife and adorable child (I never thought he'd find someone so am pleased really, is so weird though don't get how it works, he is sort of different with her though). He also has a fairly decent job. He has a specific interest that means he has made friends too.

On the other hand, I'm long term unemployed (disability benefits), single and childless. It feels like his issues affect everyone else, not him. I know that's not strictly accurate but can anyone see where I'm coming from? Whereas my hiding, silently screaming inside and self injury in my youth led to me seeking psych help, getting bad labels but no help, struggling with jobs, and having loads of lower level traumatic experiences (abusive relationships, homelessness etc.) I just feel so frustrated, because in many ways i'm very capable, I'm nice to people etc. and actually quite good at reading emotions etc... but I seem to be horribly unlucky, lonely and struggle in weird and hard to define ways.

Oh also he had lots of support/slack cut by our mum growing up, whereas I was somewhat misunderstood. And scapegoat to some extent. I also realised I've only got a normal (?) bond with one member of family, another sibling. I love being cuddled but not by family except this sibling for eg.

Sorry, bit rambly, any thoughts? I don't mean to sound nasty about my brother, I just hope some good luck comes my way and I feel overwhelmed with grief about my life. And sort of sick and guilty but can't pin down why.

NB. Yes I should seek counselling but NHS is no go (primary care say too complex, secondary services say I don't meet criteria, private counsellor stopped seeing me saying I needed more help, ie. NHS). So just thoughts or a slight hand hold with a wine are what I'm after!

Littleoakhorn Sat 26-Dec-15 05:42:15

I don't know the answer, but... Bump.

imip Sat 26-Dec-15 06:27:53

Op, I'd day the key to this is getimg yourself diagnosed. Hopefully it will give you a different 'filter' to look at things. There is a long-running adult suspected autism thread. I'm not sure where it is. But someone will be along soon who'll know.

I have am un diagnosed ASD brother who was generally 'harmles growing up. I have a 7yo dd who has auti and, yes, her anxiety/PDA just destroys our family (she has 3 siblings). In particular, she hates one sister. Our home is just one huge balancing act to maintain peace and reduction if anxieties (likely ASD dd also has OCD). You'll find a lot of support here on the SN threads.

elementofsurprise Sat 26-Dec-15 19:44:15

It just seems odd/difficult that his ASD traits make him intense whilst mine make me overwhelmed...
It's obvious he's on the spectrum. It's not just obvious to me, everyone sort of knows and makes exceptions for him. Whereas I might not even have ASD, may just be sensitive/traumatised... and I was always expected to conform.
It just seems so strange that we are in many ways complete opposties... he intense and oblivious whilst I'm quiet and sensitive. Is this how ASD works?

hiddenhome2 Sat 26-Dec-15 20:21:03

I've recently been diagnosed with asd. The presentation in women and men are different, which is why men are more often diagnosed with it. Women tend to internalise their symptoms and are more capable of learning how to communicate and pass as 'normal'.

Certainly, anxiety and depression are very common symptoms as asd is very stressful to manage on a day to day basis.

elementofsurprise Sat 26-Dec-15 21:03:34

I find it so difficult and just cant understand how inflexible he is/obsessed with rules, that sort of thing. He doesn't seem to need space to retreat either. I don't feel like I've got the same issues covered up/internalised, I feel like my issues are different.

So that's confusing me a bit... Maybe I'm just super sensitive or something. Can I ask what things you struggle with in particular?

I'm also feeling very sad about everything that has been lost in my life cos of this, and a bit resentful that he got the partner and child and I likely never will. And guilty for feeling that. Sort of like his issues affect those around him, whilst mine hurt only me sad. Do you think it's because people let men off the hook more/expect less?

hiddenhome2 Sat 26-Dec-15 21:23:31

Yes, I think woman are supposed to be more socialised and compliant, whereas with men, it's taken as a personality quirk or eccentricity. Some autistic people are sociable and outgoing though, we're not all reclusive.

The autistic spectrum is large and includes many kinds of difficulties, but it centres around sensory issues, repetitive behaviours and difficulty with social functioning. Coping with these difficulties often leads to stress, anxiety, depression and autistic burnout - where you just can't cope.

I struggle with social interaction in that I hate it and will avoid others at all times. I only interact with dh and the two dcs. I can manage to work part time, but get stressed out and am now working permanent nights just to avoid interaction. I can't tolerate being near others and will avoid eye contact and communication with them. I'm very introverted and need time on my own.

I struggle with sound and become overwhelmed with the noises that I hear. Bright light also bothers me, but not as much as sound.

I have my routines and ways of doing things that I have to stick to or I become anxious. I'm not super rigid though. I have things that I'm over focused on such as my cats and animals in general. I go through phases of being obsessed with different things.

Head over to SN section and there's a Mumsnetters with Special Needs area where you can get info and chat.

Also, go onto YouTube and search for Ask An Autistic vids. Also search for Women with Autism and take a look at those. Autism in women is harder to identify and more difficult to spot. I didn't realise this before I began researching.

Look for the Baron-Cohen Test online as well, although it's aimed at men, it might give you an idea of what's happening with you.

elementofsurprise Mon 28-Dec-15 12:50:45

Fucking hell. Can't even think properly. Talked to my parents about this and apparently, they've "known for years" I'm on the spectrum because I "clearly lacked empathy" growing up.

Er, no I didn't. I looked after younger sibling a LOT, my mum when she was ill, felt I was walking on eggshells to try to stop my dad kicking off. Apprently I "made things harder". As far as I can tell their issue seems to be I occasionally showed evidence of being a person in my own right rather than purely serving them and/or being invisible.

Yet my brother who, frankly, could be said to appear to lack empathy (by NOT doing all the thing I did, kicking off at the worse time, boring peope with his rants/monologues etc) gets loads of slack cut (not that he shouldn't have, it's the stark difference that gets me). Bloody hell.

It's the stately homes thread for me I think, but had to write this here because I'm loosing my mind here. Genuinely struggling to know how to actually carry on living. After everything, the fucking denial, the accusation that I lacked empathy when that is one thing I clearly had more of than those who wanted to shout at me, when I tried to explain how awful I felt (suicidal aged 13 due to volatile home environment) I was shouted at more.
Fuck fuck fuck

dublingirl48653 Mon 28-Dec-15 12:55:42

so so sorry to hear this op

what are your support networks like now?
do you exercise? would you consider psychotherapy? - both of those have helped me immensely recently

Branleuse Mon 28-Dec-15 13:10:59

What they say - doesnt define you. Come on. Youve survived all this.
We are here with you.

fwiw my brother almost certainly has ASD and I often suspect myself too in a much milder way, but also manifesting itself more in terms of MH issues, anxiety, eating disorders etc. Also my children have ASD too. It is tough

Your parents have just stuck the boot in with a shitty unneccessary comment and im sorry, but lacking empathy isnt about asd anyway, so shows how much they know

hiddenhome2 Mon 28-Dec-15 13:23:21

People with asd are often perceived as lacking empathy, but this is not the case. How we appear is quite frequently not what is going on inside.

elementofsurprise Mon 28-Dec-15 13:39:55

hidden I know that, but I don't think I appear to lack empathy either! They couldn't really offer any examples apart from some really weird vague stuff, and the main thing is the completely different standards for my brother. I very, very obviously demonstrated significantly more empathy and consideration of others than him - and yet he gets a raft of understanding and I get blame and very obvious kind things I did brushed aside!

My mum also said I must have ASD cos of not being able to work, cos of getting on with people. Had to explain that wasnt the reason i'm not working and actually I get on with most people! I'm not workig cos of nightmares, intrusive memories, depression, anxiety symptoms etc.

My therapist "dumped" me for being too messed upand wrote GP saying I needed more help, urgently. Services wont help, long story, see previous posts. Basically too complex for primary care and not imminently in danger enough for secondary care - longterm therapy I need not available in this area anyway, only crisis stuff. Too scared to seek another private therapist, this one worked as part of a trusted organisation, certainly wouldt trust a random solo one.

Have to go make long journey now.... sorry, im just trying to survive, i want to give up. Will be back later. Thans for replies x

farnsol Mon 28-Dec-15 13:56:08

I was diagnosed with autism a few years ago (as a 30-something woman) and I'm very much an internaliser, I'm quiet and compliant but when I get distressed I turn it in on myself and self harm. Most people have no idea of my issues because I've been masking them all my life. I have male family members with suspected ASD as well, but they are all on the quieter side too, so it's not necessarily a male/female binary split. There are just so many ways ASD can present itself.

I've not had problems getting support from the NHS and I've had involvement from secondary care services for years. A lot of my MH issues are very severe (serious suicide attempts and SS involvement with my dc) so that is always a big trigger. Like you, I've been out of work for years and I have no problems convincing DWP et al that my issues are serious enough for me to claim benefits pretty easily.

On the empathy thing, some research claims that people with autism have too much empathy rather than too little. But I also think it's easy to be defensive about it, and I recognise in myself that I am not a very empathetic person, and neither is my DS who is diagnosed with ASD. I see it in many other autistic people I know as well, especially the engineer types. I don't see it as a character flaw but just something that's part of our autism, and in some ways it's not a flaw but allows us to remain detached and able to deal with some things more efficiently than if we responded emotionally to every little thing.

sneepy Mon 28-Dec-15 16:28:10

Are you sure that you're on the spectrum and not just emotionally damaged by what sounds to me an extremely abusive family?

Some distance from them might help--it's amazing how quickly you stop feeling like shit when there's nobody in your life telling you how shit you are.

If you feel up to it, maybe try again to access some therapy? Sometimes you just have to ask quite forcefully, hard I know flowers

elementofsurprise Mon 28-Dec-15 23:27:05

I've read a bit bout empathy and ASD. I can read facial expressions etc really well, according to tests, and to actual people. If I'm on the spectrum that is not something I have issues with. My younger sibling finds it strange my parents have said this because they remember me looking after them a lot when they were a child and being caring etc.

I think my mum is on the spectrum, she did/does/says bizarre things occasionally, including intrusive weird stuff.

Here's an example: when I was about 14, my (ASD) brother decided my bedroom would be much better with the furniture arranged a different way. He got obsessed with it, drawing diagrams etc. and refusing to listen to me saying I liked it how it was (with good reason eg. desk facing window etc). My mum got on board and they hatched a plan to move all the furniture round while I was out, because they knew I didn't want them to. It was just bizarre and intrusive. Fortunately my dad found out and stopped them (although he was the shouty unreasonable one in general, when my mum did weird stuff he'd step up).

And this Christmas, it was decided, after I'd booked my ticket to visit, that I could just be left to sleep on the sofa rather than a spare room, because my nephew (ASD brothers son) needs his own room. There are good reasons for needing his own room, that's fine - but no-one thought to let me know or that there might be good reason why I needed some space to retreat to! When I asked I was told "Oh, but (brother) wouldn't have been able to come otherwise!" but no thought that maybe I'd not be able to come in that case! Or to even, you know, call me and let me know I was sleeping in a room in use from 7am to 2am hmm. (Fortunately lovely younger sibling gave up their room, otherwise god knows what would have happened - would deffo have gone down as me being awkward though).

sneepy I've started to wonder myself if I'm just "disturbed". And believe me, I tried to get counselling when I first left home and was treated like a waste of space. In my stronger moments I feel I have been massively scapegoated and services continued that. As an adult I've then been through difficult stuff due to struggling to work/getting taken advantage of/abusive relationships from being a people pleaser/being homeless etc, so I'm really messed up now. (Loads more attempts with services, they REALLY don't like me!) It's feels breathtakingly awful when I stop to consider it. Sorry I know people go through worse, this just seems... weird. It's the weird that makes it so hard, and feel no-one would understand.

elementofsurprise Mon 28-Dec-15 23:28:06

ps. thank you to those who have shared their experiences of ASD, and anyone who's read my ramblings... flowers

elementofsurprise Mon 28-Dec-15 23:29:42

pps. Meant to add, my mum is lovely, she is just a bit odd at times, hence me thinking the ASD is from her side. Also we haven't bonded normally.

imip Tue 29-Dec-15 06:41:23

Op, I think it would be really useful to start the process towards diagnosis. We can't diagnose you online, but I think if you've wondered about it often enough, it's certainly worth exploring. Having worked out recently that my brother is autistic, as well as my dd, it enrages me that people can go through life with experiencing mental health issues or knowing something feels 'wrong' when ASD may be at the route of troubles. For us, it meant the nhs wasted a year of money with dd visiting a child psych to help with her anxiety. All along I'd been saying she had ASD but I was dismissed at neurotic. Anxiety ended up causing dd to self harm age 6. It was only then she was seen as 'bad' enough to go to cahms. ASD was instantly suspected and 6 months later we had a diagnosis. So, I urge you to seek diagnosis and perhaps look at the suspected autism adult threads here flowers

sneepy Tue 29-Dec-15 08:16:02

I didn't mean you were disturbed!! I just meant they've done a number on you and are still doing it and you're apologizing for them. Please don't think of yourself as disturbed. Xx

PrincessTeacake Tue 29-Dec-15 16:41:35

OP, I was diagnosed with Asperger's Syndrome years ago based on a couple of things I was doing that the therapist at the time thought were unusual (I was having trouble coping with college, frequent illnesses, would forget what I was saying mid-sentence, depressed, etc.) As it turned out these were symptoms of a physical disability that was then undiagnosed until I was in my twenties.

You sound to me like you're coping with PTSD and the results of being raised in a dysfunctional family, and that's a separate issue to a dx of ASD. You need counselling to figure out the difference and work through the things that are holding you back, and after that you can figure out where you stand on ASD.

Therapists are just people, they can be crap or they can be great, they can come into the job filled up with their own biases. What might work for you is finding a private therapist that specializes in anxiety disorders and has recommendations. Find a mental health specialist forum board and see if the people there can give a doctor that can help you. I had to do that to get my dx, had to travel to the other side of the country to get it and it was honestly the best thing I ever did.

elementofsurprise Tue 29-Dec-15 17:07:59

I went to an organistaion of therapists who "match" you with someone suitable, supposedly. Otherwise it's just me on my own trying to find someone. I'm terrified. I also am unlikley to be able to afford the fees for one that is getting proper supervision etc, the reason I went for this place is cos I had a personal recomendation, one from MIND, and they offer discounted rates to those on benefits.

The therapist didn't seem to believe that the NHS wouldn't help me, which is really relevent as I went through a lot that could have been avoided if they had. It was weird - it was ok at the start but more recently it just seemed like she didnt care, couldn't remember anything I told her etc

The ASD thing is a bit of a red herring right now, I'm struggling with basics since being gobsmacked by my parents bizrare version of reality, I feel awful and have preety much no support and thats why I posted here.

Also I told the GP about my family/how i felt when I was 19 and sought help - asked for counselling. Was dx'd BPD and rejected from all services (didn't have obvs BPD traits just they decided that would be it). I just want to give up now, there is literally no one I can turn to, im only still alive for my pets. Sorry to be so bleak. I thought maybe someone would have some experieces/advice of family thing, not ASD.

elementofsurprise Tue 29-Dec-15 17:09:53

ps. initially sought help pre 2007 so they used to do that.
Also tried to make life ok but broke down 5 yrs ago and never been the same. I want to give up. Think need miracle now. Too much shit no matter how i try to do right things to make it better.
im srry if im not making much sense x

elementofsurprise Tue 29-Dec-15 17:10:52

Also meant this therapy place I had a personal recomendation AND one from MIND

elementofsurprise Tue 29-Dec-15 17:12:50

princess I've been on MH boards before, its not the same. I like being amongst mainly femle posters, and MH boards never lead anywhere, just feels better here, i can go via GP for diagnosis I have checked that, he will refer me, its just coping right now and with the family thing thts the problem

elementofsurprise Tue 29-Dec-15 17:18:10

Also I keep wondering about calling the crisis team, but if services know what my parents hve said, theyd just get on board with sticking the boot in. Anything to confirm their view im just a worthless horrible attention seeker. Theyd never diagnose PTSD! Al roads lead to BPD to them - and no trauma therapy, only watered down DBT "skills" to teach me how to "behave"!

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