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      Depression, Mental Health and Crisis Support   06/04/2017

      Depression, Mental Health and Crisis Support   Depression and other mental health difficulties are common amongst people on the autistic spectrum and their carers.   People who are affected by general mental health difficulties are encouraged to receive and share information, support and advice with other forum members, though it is important to point out that this exchange of information is generally based on personal experience and opinions, and is not a substitute for professional medical help.   There is a list of sources of mental health support here: <a href="http://www.asd-forum.org.uk/forum/index.php?showtopic=18801" target="_blank">Mental Health Resources link</a>   People may experience a more serious crisis with their mental health and need urgent medical assistance and advice. However well intentioned, this is not an area of support that the forum can or should be attempting to offer and we would urge members who are feeling at risk of self-harm or suicide to contact either their own GP/health centre, or if out of hours contact NHS Direct on 0845 4647 or to call emergency services 999.   We want to reassure members that they have our full support in offering and seeking advice and information on general mental health issues. Members asking for information in order to help a person in their care are seeking to empower both themselves and those they represent, and we would naturally welcome any such dialogue on the forum.   However, any posts which are deemed to contain inference of personal intent to self-harm and/or suicide will be removed from the forum and that person will be contacted via the pm system with advice on where to seek appropriate help.   In addition to the post being removed, if a forum member is deemed to indicate an immediate risk to themselves, and are unable to be contacted via the pm system, the moderating team will take steps to ensure that person's safety. This may involve breaking previous confidentiality agreements and/or contacting the emergency services on that person's behalf.   Sometimes posts referring to self-harm do not indicate an immediate risk, but they may contain material which others find inappropriate or distressing. This type of post will also be removed from the public forum at the moderator's/administrator's discretion, considering the forum user base as a whole.   If any member receives a PM indicating an immediate risk and is not in a position (or does not want) to intervene, they should forward the PM to the moderating team, who will deal with the disclosure in accordance with the above guidelines.   We trust all members will appreciate the reasoning behind these guidelines, and our intention to urge any member struggling with suicidal feelings to seek and receive approproiate support from trained and experienced professional resources.   The forum guidelines have been updated to reflect the above.   Regards,   The mod/admin team
janb55

My son 32 just spent 10 days on life support

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janb55   

i would appreciate any advice...help...support for my son because so much has happened in the last month... the situation has escalated so quickly ... i think it may be easiest to state dates and events to clarify what has happened

 

my son ... and his girlfriend.. live with me. i have tried to get help for him for ?? years... he lost his job 5-6 years ago ,,, treated very badly .. second son of four... spends all day every day in his bedroom.. smoking.. drinking and gradually restricted his eating to almost nothing

 

friday may 1st

 

i was staying with my son in essex for the bank holiday weekend ... i live on the isle of wight...and i was speaking with my friend on the telephone... her teenage son is awaiting assessment on the autistic spectrum and things she told me about him started alarm bells ringing in my head ... i couldn't speak...she knew i was worried about my son and i managed to say ??/ oh my goodness ...sounds like tom....and she said but he is a fully functioning adult isn't he? and for maybe the first time i blurted out... no.. he's not...

 

i spent the day on the internet and telephone trying to find out more and many of the symptoms...characteristics of aspergers describe tom to a tee...i have made notes on articles etc but haven't had chance to go back to them as events took over... highly intelligent..... terrible handwriting... not a sporty bone in his body ... socially ?? awkward...always wanted to be included in the adult company and conversations not the children ... knew every flag of the world... lots of things that i need to re read now... i felt sooo positive and spoke to a lovely lady on an advice line and she recommended a book called Asperger Syndrome and Alcohol... i had been desperate to help him ....downloaded the kindle edition and it is possibly what saved his life...

 

sunday may 3rd / monday 4th

 

i drove back from essex got home in the evening ...decided i would broach the subject when i could because he is smart and has made no secret that he is a bit OCD ...mentions it often ... again not diagnosed....so he is open and aware of things that affect people..i didn't see him on the monday

 

tuesday may 5th

 

deliberately sat in my study so that i would be able to hear him as his bedroom is next door... when i heard him moving around i went in and asked can we talk ?l he wanted to sleep on but i said ok but lets talk later ... tried again later ...laid on his bed with him and started explaining but could tell he wasn't well... i pretty much begged him to let me get help but he said no...cut to the chase.. when his partner arrived i said we HAD to do something ... she said he would hate us if we did and i said ..well he'll have to hate me and i dialled 999.. paramedics arrived while i was still on the phone... checked bp etc and they looked ?? gravely concerned said options were .. hospital or...and i just blurted yes..hospital... actually felt relieved that he was going to get some help...

 

thursday may 7th

 

by thursday he was in intensive care ... all happened so quickly .. he deteriorated and was sedated and put on life support... because his lungs failed...his was in heart failure...they had the kidney filtration machine on stand by... he was diagnosed with sepsis ... life threatening ...total body septic shock... some infection ...treated for chest infection / pneumonia and the consultant warned us that in his 25 years experience no one in tom's state had ever recovered... but they would do EVERYTHING they could for him ... and oh my goodness they did... they pumped him full of so many things ...a list as long as your arm....blood transfusion ... platelets ...the lot

 

friday may 8th

 

just got worse and worse ... the sepsis was "raging" through him.. his temperature went above 40 degrees ... and the consultant told us "he will die" his brother came from essex... his youngest brother who lives in texas flew home... and family came to see him... it was totally hideous ... that is the only word i can use to describe it.. i was in absolute terror of my phone ringing during the night... then dreaded what thy would tell us the next morning..

 

he had to have his chest drained as his right lung had collapsed ... a routine procedure but on a high risk patient as he was ?? an empty shell... his platelet count ... which is what makes the blood clot had been 14 when he was admitted ... normal is 140 + ..it fell to 3 and then to 1 .... so the doctor told us there was a real risk of him just bleeding .... sometime after that ... can't remember what day he had to have another chest drain the other side which was in a more difficult position ....

 

but the critical 24 -48 hour period passed and he was still alive... temperature kept spiking and infection markers raised ... but gradually... very gradually we started getting good news... might lose the tips of some toes because the circulation had been sending everything to try and protect his organs.... they dragged him back ..... overwhelmed and in awe of the ICU nurses and the NHS....

 

sunday may 17th

 

he had been moved from a separate room to the ICU ward i think the day before and we walked in that morning and he was off the ventilalor !!!!!!!! wonderful wonderful surprise ... the dates after this are blurred but he then spent about a week on the cardiac unit ... diagnosed with dilated cardiomyopathy... his heart is damaged from alcohol ... so he is on medication... he was discharged last friday ... so now i can resume and revisit my thoughts on aspergers.... don't now where to start yet ...still reeling ... but he is back to spending the day in his room... although he is still poorly he is soooooo much better than he was... he has started eating three times a day... on special high nourishment milkshakes and takes vitamins ... but he is alive... not living..

 

the irony is that his partner is a learning support assistant and works with children who have aspergers... she doesn't agree with me ...she says she can tell by looking at her groups and recognises who has aspergers... wasn't happy when i talked about it at the hospital... yesterday she ordered a tesco home delivery of apple juice etc but there was a computer game for him also... which will keep him in his room ... she says we don't need advice..i disagree... any info ..suggestions..anything ...greatly appreciated.... thanks if you've managed to plough through this .....at a bit of a loss at the moment what to do / what not do for the best... thanks ..jan

 

apologies .. just realised i didn't even say hello...hello !

Edited by janb55

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oxgirl   

Hi jan, you've obviously been through an extremely traumatic experience with your son fighting for his life. I think you both need some time to recover from the effects that that has bound to have had upon you both. I personally wouldn't go rushing in with your discussion about possible Asperger's at the moment, give it a bit of time. Concentrate on getting YOUR strength back and also getting him back to fitness. When he is as well as can be expected, then would be a good time to sit quietly with him and talk about your concerns and what you think he needs to do to help himself and the future.

 

You say he spends most of his time in his room. Is he on jobseekers allowance or is he actually looking for work? Could you encourage him to help out in a charity shop for some hours a week to get him out of the house. At the end of the day, it is your house, and presumably you don't want him dossing about indoors all day without contributing anything. You don't say if you yourself work or get some respite for yourself, because it is a strain having a grown up child living with you. It could be good maybe to set some ground rules, in that he does at least help with cleaning the house or shopping or comes out for walks or something, rather than just allowing him to sit in his room all day, which obviously isn't healthy for anyone, as you well know. Does he go out with his girlfriend at all and where does he get the alcohol from or the money for it?

 

Good luck with it.

~ Mel ~

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Mihaela   

Sorry, read my next post. :/ (This one only partially posted so I deleted it)

Edited by Mihaela

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Mihaela   

What an awful experience for you all - and what a relief it must be that he's pulled through! What made him turn to alcohol? Was he depressed? Depression is very common among us Aspies. I've had it many times in my life, sometimes for very long periods. It never entirely goes away, but luckily I never turned to drink. (I can't stand the taste or smell of alcohol, so maybe that sensory issue saved me). I had a cousin who almost certainly had AS, who turned to drink, and eventually he ended his own life. I've identified five other relatives (all on my mother's side) who are/were very likely on the spectrum. Can you find any family links? (Be aware that no two people with AS are the same, and that girls tend to present even more differently).

Working with children who have Asperger's means little. Most children with AS don't attend special classes or schools, and many are diagnosed late in life (like myself) or not at all - especially those with high IQs and females - who are better at masking their 'give-away' traits. I've known many people of all ages with AS. All are very different. Some - like those children that your son's partner recognises - are easily noticeable, but I'd say

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Mihaela   

Grr! It did it again! To continue...

...but I'd say most are not. I suspect her experience isn't wide enough. If you read the posts made by Aspies on this forum you'll begin to understand what I mean. Why wasn't she happy with you mentioning it at the hospital?

You do need advice, for your son's future could depend upon gaining an accurate diagnosis. I lived with my parents most of my life, until my mother died in 2012, when my support vanished and left me incapable of living independently. My parents always knew I was 'fragile' but had no idea why. It was only after I discovered that I couldn't manage that I began to research AS, and realised that I had virtually all the 'female-type' traits, so I sought a diagnosis and got one. It came as a great relief, and after much struggling I've at last got the support that I desperately need. An early diagnosis would have made our lives so much easier.

 

I have an Aspie friend in his twenties living with his parents who spends most of his life in his room playing computer games. It seems to be a very common pattern, and I worry about his future.

By the way, all these traits applied to me too: "highly intelligent..... terrible handwriting... not a sporty bone in his body ... socially ?? awkward...always wanted to be included in the adult company and conversations not the children ... knew every flag of the world..." Yes, even down to the flags! :)

I'd go along with Mel's advice and wait until your son has properly recovered before going any further along the AS road. Also, I hope that he'll keep away from alcohol from now on. It was most likely a coping strategy (as are computer games), but not a good one. He's very lucky to be alive.

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janb55   

thank you so much....i think you are right ... not the right time just yet.... i just felt so positive for the first time in quite a few years having found a potential explanation ...a chink of light before all this began... his handwriting has always been pretty much illegible ( as was mine...actually remember at a strict.. high achieving school i went to that i was kept in one lunchtime a week to "get it right" ) by the time he reached high school i was asking for advice and they were very unhelpful and blaming tom for not trying hard enough...i remember saying .. it's not that he won't do it.. it's because he can't ....

 

he also has a coat that when he did ever venture out to the shop and back he wore come rain or shine ... his pockets were totally stuffed with things he needed /wanted to know he had with him ... his pockets looked like saddlebags on a donkey... he called it his OCD...he also .. as has his youngest brother (28) has incredibly sensitive eyes ... he wears sunglasses all year...as do i actually !?!?!?! when he was admitted he had multiple and i mean multiple styes... which cleared up while he was in there but a bit bubbly again now though he has an appointment at the end of the month..

 

i can't understand what has happened between his girlfriend and i ... i have always respected my sons' partners and at the hospital i made a point of letting staff know that she is 'family' ... more than just a girlfriend... a partner of ten years... as visiting was anytime but family only ...during the darkest days we were solid... when one of us broke down... briefly.. the other immediately comforted and calmed the situation... but as he started to get better i started to feel as if some sort of competition developed... important things and trivial things ... she had to have the last word which was often quite daft and she would qualify it by saying sooo many times "if that makes sense"... which it didn't ....or "not being funny but..."

 

yesterday we exchanged texts ... while he was in hospital she removed his beer supply from their room... her dad is going to pick it up but the only place to store it is in my study.... but when i was in their room talking to him i noticed a stock of wine... vodka and other stuff... hers not his ... ( she doesn't drink every day.. though goes out on the razz with girlfriends now and again and i can hear her being sick the next morning) so i asked if she could please take that out too... she said "don't think he'll touch it .. but sure" and it just went downhill from there ... i thought least said...soonest mended although i really wanted to stick up for myself but... as he has had no income for maybe a couple of years... she has bought his beer and tobacco ... eventually when he wasn't strong enough to go out she gave him her card to get a tesco home deliveries.!!! ..must have cost between £50 - £70 a week ... far more than she contributes to the house.... she told me i need to do this ...i need to do that ... i have said we need to encourage him to gradually leave their room ...she agreed yet she had a new computer game delivered for him ...i had the devil's own job to tear him away from it to come and eat and go to a dr's appointment yesterday

 

i intended cooking pork chops new potatoes etc the other eveing and she had brought in family size bags of crisps and snacks which he munched till he wasn't hungry...... anyway ... becoming very aware that i am moaning ... completely off the subject of aspergers... but i appreciate both your advice and support... will get him well ..physically... read through the posts here ... and return to the subject when it is appropriate... thanks for listening ! jan

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Livelife   

What a terrible ordeal you have all been through but at least he's making a recovery now and in the future there is a real possibility that he will improve in every way once the autistic diagnosis has been addressed.

I concur with the others that you need time before taking any action I think everybody needs time to reflect on what has happened and be emotionally stronger to deal with the possibility of Aspergers because even though the problems traits have always been there recognising it and dealing with it is another matter.

Having the diagnosis can be a shock even if your prepared for it as I was it's a big change in my life and will most likely be in your sons as well, so I can see why his girlfriend could be reluctant given his current state of health but equally it needs to be dealt with at some point in the future for his own sake.

There will be a lot of different opinions about this with family members how to move forward the best thing to do for him which is fine everybody is doing their best in a difficult situation.

The thing in my opinion is to gauge your sons reactions it's that simple, you will need to push beyond certain boundaries but know when something is going to be just to much for him to deal with and except his limitations not what somebody thinks he should or could be doing.

Working with him and knowing him well leave things when he's clearly not coping and you can see this to be the case, as he has a drink problem you don't want him returning to that or finding escape in some other way that is equally harmful or finding him so depressed because things are so difficult he just doesn't want to try anything.

I think you have all done the best it's possible to do and you will need to assess the situation day by day or even hourly if he's that vulnerable and family arguments will happen due to the situation.

Don't push beyond what is possible the more that happens the worse the situation will be, it's sometimes easy to do because you only want the best. That's my experience hope it's helpful.

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Luke Beardon has written a couple of books on undiagnosed adults and employment. It sounds like your son could have been in the book. Alcohol as a coping mechanism. Knowing you don't quite fit in to the predominant neuro-typical world ending in depression. I think your son may see this as a revelation where his experience of the world is valid.

 

I would see if you could get support through a local autism support group as regards specialist psychological support and pointing in the right direction for mental health intervention or planning to seek diagnosis. I hope he is strong enough to move forward and well done for been there for your son and been his advocate.

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Livelife   

Luke Beardon has written a couple of books on undiagnosed adults and employment. It sounds like your son could have been in the book. Alcohol as a coping mechanism. Knowing you don't quite fit in to the predominant neuro-typical world ending in depression. I think your son may see this as a revelation where his experience of the world is valid.

 

I would see if you could get support through a local autism support group as regards specialist psychological support and pointing in the right direction for mental health intervention or planning to seek diagnosis. I hope he is strong enough to move forward and well done for been there for your son and been his advocate.

What are the book titles from Luke Beardon that you would advise reading I would be interested in reading them, he may have a number of books and was wondering which one if any would be preferable.

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Livelife   

Thanks for the information will see if they are available on kindle.

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trekster   

Hi and welcome.

 

Did the crisps and snacks contain gluten, malt or dairy? If so they could be what he's really craving. Also the reason for diminished appetite. I felt yuk for a few weeks after completely withdrawing from gluten dairy and malt but the experience has been worth it.

 

Is his jacket tight fitting? If so a squeeze vest or weighted vest might help with his sensory need for the jacket. Dressing regardless of the weather is an autistic trait.

 

He seems like the sort of person who would be receptive to an aspergers identity. But would he go for an assessment? Could his gf be in denial of her aspergers and projecting that behaviour onto him?

 

Have you looked up visual stress or irlen syndrome? They could explain his light sensitivity issues.

 

You have a legal right to a carers assessment from social services.

Edited by trekster

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