Struggling with helping myself and my 26 year old son

Thankyou Nikkij for your reply, and I am sorry to hear about your health scare and wish you well.  I have a few problems with my health not life threatening though and as I am a sole carer I just keep going I have to.  I worry inwardly about the future its a very scary prospect, and one that I have very little control over.  Different parts of the country seem to have better or worse resources and since the NAS doesn't like particular authorities mentioned all I can say is my area seems lacking.  All I can do is support my son who is very low at present..he has been offered a couple of placements in the past both in charitable organisations helping with  the clerical work, both of which on paper seem ideal but he left the first placement when two of the staff lost their jobs due to lack of funding and he was left with a man he didn't like the second potential placement didn't even get off the ground as he felt as though the man in charge was condescending towards him this particular charity closed down very shortly afterwards again due to lack of funding.  I have explained more times than I can count to Social Services that putting my son in a placement for work experience and then walking away without support is not going to work.. he does not [supposedly] meet the criteria for a social worker .. the last assessment he had the social worker said he just needs a bit of a push.....showing a complete lack of any understanding of Autism... I could continue .. thank you for listening ..

Hi Moonriver, I am so sorry to hear of you and your sons situation. My son is just weaning himself of his antidepressants. It is going OK but he is very up and down. We have had a horrible last 6 months I have had a cancer in my lung a very rare cancer . I am very lucky that it has all been removed and I will hopefully get completely better. It has caused my son and myself a lot of stress worrying about what was going to happen to him. 

Over the last few days we have been talking about the way he sees no future. No job no friends and no girlfriend. I like you try to keep him positive that something will work out and that his life will improve.

I think all the stress of me being sick has made everything seem worse for him.

I too have reached a point of not knowing what to do any more. I try to keep positive and should be feeling really happy as I have been so lucky over this recent scare, but it is very hard to feel positive when you really can't see a way forward.

I wish we could wave magic wands and make their lives happy. That is all I wish for him and that in turn would make me happy.

My thoughts are with you and your son. Lots of love Nikki

My son is feeling anxious and I am feeling anxious for him, I have spent the past twenty five years telling him something will work out.. dont give up.. I feel so angry .. actually maybe I am past angry with the authorities.. I dont now expect anything..  thats the nub of it .. where do you go when every avenue has been explored ..carers assesments offer diddlysquit.. I am here holding everything together  why should the authorities give anything? my son is I feel assessed by criteria it is impossible to meet..he is well behaved.. quiet and long suffering...gentle and timid.. people have remarked over the years how nice he is.. and he is..  he was bullied at school ..all his dreams and mine evaporated before us .. he still feels hurt by a system that has and never will apologise for failing to protect him..us..  too busy protecting themselves..

He is on anti depressants but right now he is tearful worried about the future..

very rarely seen any tears over the years.. he has he says had an epiphany.. thats the scary reality he has also realised what I been protecting him from all these years that the system offers nothing.. he doesn't fulfil the criteria.. too well behaved, and too long suffering, he wants the same things as always a job, friends and a sense of achievement.. I dont know what to do anymore...

Your most welcome. It is good to have someone to talk to and understands what you are going through. I hope your son finds happiness and also finds a job he feels comfortable in as well. Take care xx

Thank you so much for replying to my message. I'm new to the site and the first message that caught my eye and resonated with me was yours. I must admit reading about your daughter made me tearful as I can relate so much with your story.  My son too is finding any kind of work difficult and he always seems to have someone working with him who is really critical and just plain nasty. For you and I it's easy to shrug off but to them it's demeaning and makes them feel worthless. I know my son doesn't mean to upset everyone and I'm gradually trying to understand the complexities of aspergers. He hides his aspergers side very well from other people which I find hard. I hope your daughter finds a job that she is able to cope with, she has certainly done very well coping with uni. Once again thankyou for your reply. Xx

It is quite a while since i have left a comment, my daughter is now 21 and just finished uni. It has been a 2 year emotional roller coaster for me as much as for my daughter. She did not get much support at uni and because she would not go to a counselling session once a month (she finds it hard to sit and talk one to one with someone she doesn't know, this causes her great anxiety) the tutors did not give her much support. I spent alot of time worrying about her, having to go and stay with her because she was so run down with the anxiety and stress.

Now she has finished uni she is job hunting but I don't hold out much hope for her staying in a job long term, she has had a few part time jobs but has ended up leaving because she misinterprets peoples expressions and emotions. She seems to always think people are looking at her crossly or giving her funny looks. She takes things people say in the wrong context so thinks they are critising her and ends up upset. she also gets bored very quickly with the jobs. She does want to work and is constantly looking for a better job with 'nice' people but I don't know that that perfect job is out there. Nicjd, it is hard when people don't understand what you are going through, my mum seems to think she will grow out of it. As much as we love our children it is exhausting living with them especially when they either won't recognise they have aspergers syndrome or won't get help. My daughter still won't discuss it and doesn't put it down on application forms so she wouldn't get any support at work if she needed it. All I can say is keep trying to understand your son, I now work with people with Aspergers and from what I have learnt they don't get any pleasure from hurting you, they may not appear to be bothered but they are deep down. Good luck

Hi, I have just joined the community having just about come to my wits end with regards to my son. I read your post and can totally relate to the things you have been going through. My son has never had a proper assessment but I know that he is an aspergers sufferer by his actions. He is 26 now and as he was growing up I always thought of him as a very shy boy and just a bit odd. I think when they are very young its difficult to put your finger on anything they appear to be doing differently to other children. He seems to be getting worse the older he gets. He hates life, has real outbursts thinking the world owes him something. He has a group of friends who were all together at school, whom he sees as and when but despises social situations and therefore rarely goes out. He has had a few jobs here and there but never settles, giving one excuse or another. He obsesses over football and will sometimes sit there twiddling with his fingers. As you have said I just want him to be happy but wonder if there is anything which will. He also goes on about being a millionaire, as if money will solve anything! He is a handsome boy with good friends but drives me and his father to distraction with his selfish hurtful remarks. I sometimes have major outbursts with him and have to walk away then the next day he will apologise. I've been to the doctor with him and had a referral to mental health but he refuses to go. I know it sounds rediculous but I was glad to read that I'm not the only person having to go through living with a son with aspergers. It's so hard to explain things to people who don't understand. Many thanks

That's no problem, nikkij! Always glad to help people with some similar/differing experiences or outlooks on things, especially if they prove useful in any way.

In terms of support groups/classes, make sure you find a good one that listens to what you have to say, as sometimes that won't be the case. Usually, one that has a good mix of individuals or a teacher with a bit of character will go a long way in terms of useful help.

All the best to you nikki!

hank you for replying. I do find coming here helpful as it is interesting to hear of others experiences it makes me feel less alone. 

Before my son was diagnosed everything was "my fault" I was told I was an overprotective mum and that he would be fine if I just let him go.

More than anything I want him to be able to "go" and make friends have a job etc. etc.

I am retired and my son is late 20s so we are stuck in a pattern of behaviours, he lives with me.

I cannot just chuck him out and let him get on with it as I know there is no real support for him.

Maybe one day he will find his niche and life will actually give him some enjoyment. Until then I just bash on being as supportive as I can.

I am waiting to hear about a support group "class" for me that will help me deal with our issues and perhaps understand my son more.

Hi nikkij!

Good luck on your son's university progression! Hopefully he'll be able to find a good niche in life somewhere along the line!

As far as "mentors" have gone, honestly, it doesn't surprise me that he ended up with someone who knew nothing about the condition. This appears to be commonplace, particularly in educational institutions. Whenever I was "offered" this support, I sort of knew at the time that it was more of a platitude done out of the illusion of appearing "inclusive" as opposed to genuine help. I know a guy a year below me who enrolled at a college with this so-called support, and ended up being kicked off his course because of his depressive spells. Charming, isn't it?

When I read your original post about your son concealing his unhappiness to the world, believe it or not I think that's an encouraging sign. Not many people with Asperger's are able to conceal their emotion like that with any proficiency, and many people who come out in the open to the world outside about their depression are often making a big mistake; as you can no doubt understand, most of the world are at BEST unsympathetic and at worst, out to take total advantage of people who have the condition. I know it may not be much of a comfort to you to see that he hides his feelings, but believe me, in the wider picture it stands to his favour that he can do that. Personally, I wouldn't encourage him otherwise and disclose his feelings outside the home; just too much of a gamble, with the way people are.

Well done for resisting the pills, by the way. I wish you both the best of success with life and hopefully it can bring something really enjoyable in the near future! Have a nice weekend!

Thank you all so much for posting. I had not been back here for a while as things have been really hectic of late and I had not realised that postings had happened.

I did not go to the doctor yet as she will just thrust more pills my way as a solution and I don't like taking them and being in a fog.

My son has just been accepted as a late part time student at University. This has brought lots more worry as they just don't seem to "get" his problems. He has applied for DSA but this can take up to 3 months to be granted. In the mean time, after a lot of pressure from me they supplied a mentor for an hour a week. When he met her she knew nothing about Aspergers she was specialised in Dyslexia!!!! so that did not go well.

There has been lots of confusion about what he has to attend in the way of lectures and classes and what he can do from lecture notes at home. He was originally told that was Ok but they are back pedalling saying he has to go to lectures. 

He is hanging in there and just going to the labs once a week at the moment. We will have a clearer picture once we have had his DSA assessment as to what he has to attend and what support the University needs to provide.

Geordie it sounds like you daughter has a similar problem to my son , he will not participate in anything social. Its not that he does not want to, he tells me he just cannot join in.

I so wish that there was some way to help him get more out of University. It would be so nice if he made a friend.

Good luck to you to Geordie and best wishes for your daughter may they both be happy:)

Nikkij

Hi 

My daughter is 19 years old and like your son spends alot of time on her laptop or gamestation rather than getting a good night sleep. She is currently at university and as she doesn't get in volved in the social side of uni she spends alot of time in her room on her laptop until early hours of the morning. I worry about her health and lack of sleep as she is very under weight although she eats for england. I totally understand how you feel I know that although on the outside my daughter seems ok underneath she isn't happy. She gets defensive if I try to discuss things with her and as she has only been recently diagnosed I am unsure what to say as I dont want to give her a complex about not going out or spending so much time on the computer. I am so proud of her and love her so much but am totally worn out with worrying and the negativity from her. I don't have an answer for you but I wanted you to know I know how you feel you are not alone. Good luck. sorry posted this and realised I had sent it to the wrong person - gosh i must be more stressed than i thought!!!! However some of it relateds to you nikkij, as mums who just want our children to be happy. Best wishes.

I have also had a recent encounter with the idea that people on the spectrum are more empathic. The problem is that sensory overload gets in the way.

I can also relate to Dream's experience of shutting down when trying to go through any kind of unfamiliar experience, like logging in to some websites. And if someone is going on about something, I shut down.

A parallel issue is this notion that people on the spectrum "lack imagination". If you have difficulty following social interchange, and take things literally, and take a long tiime to process information, you might well appear to lack imagination. But the claim is nevertheless preposterous, and if anything the opposite is true.

It just evidences the consistent failure of the so-called centres of excellence on autism to properly understand the condition and the difficulties in people's daily lives.

But if you look at the study population they use to provide examples, they are usually working with people with secondary issues such as depression or psychiatric problems (as, let's face it, people who are managing don't get seen). So how do they distinguish actual day to day behaviours due to autistic spectrum, rather than those due to secondary complications?

I suspect the problem for many parents is that a great deal of the day to day issues facing people on the spectrum are inadequately documented and little understood. Meltdowns are an obvious example.The people in the front line are the parents or carers. They have nowhere to go to for help, and are often left to problem solve via first hand experience. Yet their experience generally isn't being recorded or studied.

So I can fully empathise (even if not deemed capable) with what Nikkij describes. There really needs to be better support for parents and carers. Parents Groups don't necessarily do that, as they just seem to fester with anger. And I cannot see anything meaningful in this direction coming out of the Autism Act.

nikkij said:

Thank you so much for responding.

It's my pleasure.

Being diagnosed so late in life has been both a "shock to the system", but also illuminating for me, providing an "explanation" (in some ways) as to "why I am like I am".

Although I am relatively articulate and spoke well from a young age, things that my father noticed such as me being "word-blind" (a printers term apparently) turned out to be "dyslexia" (the medical term), and my "contrariwise" nature appears to be "oppositional defiance disorder".

As your son was diagnosed a couple of years ago, have either of you sought out further information or support? My first "post diagnostic session" was a couple of weeks back, and at that juncture I had been unable to follow the Psychologists advice and join NAS, as on the two occasions when I tried I became totally overwhelmed and my head sort of "shut down". This weekend though I went through the process and feel better for having done so.

My mother is reading books on the subject, unfortunately that too has created some "conflict" between us. She keeps reading quotes from a book about "lack of empathy" and I feel my "emotional buttons" being pressed because I don't agree with the statements, so I start getting angry. My mother on the other hand seems to think the book is wonderful. Only yesterday though I was introduced to an alternative theory of autism and empathy, the "Intense World Theory" which suggests people like myself are actually MORE "empathic" and become overwhelmed (which in honesty makes soooo much more sense than my lacking empathy).

I also discovered only a few hours ago that there is actually a Government Act of Legislation, the "Autism Act 2009" which creates certain "duties" local authorities are supposed to comply with. I can't say I understand it all yet, but it appears that both "carer" and "sufferer" have certain "entitlements" now. Perhaps when you visit your GP tomorrow you could ask him "what next?". I am sure this website will be able to explain what "new rights" both you and your son now have, and offer suggestions of what the "social services", "Council" or NHS may now provide.

Again, I wish you all the best.
Safe journeys,
Dream

Thank you so much for responding. It is very hopeful to speak to someone on the other side of the issue so to speak, and to hear that you and your mum struggle like we do.

I am trying to improve my day I have just walked the dog for an hour:) maybe the doctor will be able to put me in touch with someone I can talk to.

Its hard to explain, sometimes I just need to unload all my worries, I am not expecting a resolution just some sympathy I think.

I have told my son about this forum hopefully he will come and take a look.

Dear Nikkij,

I am very sorry to read of your circumstances, much of the situation you speak of resonates with the situation between my mother and I.

I've only recently been diagnosed (this year) with Aspergers Syndrome, whilst last year I was diagnosed with AD(H)D. I'm in my mid 40's, and neither my mother nor I realised when we were talking to each other, we were often having totally different conversations.

I was also diagnosed with "clinical depression" in my late teens or 20's, and although I knew both my parents "wanted what was best for me", there was nothing they could really say or do which lifted my spirits. My father (who has now sadly passed, and we also suspect now would be classed as having AS) was the worst saying things like "get your hair cut, straighten your mirror, tidy your room, you'll feel better then" (which was crazy from my perspective).

Antidepressants never suited me, however my mother and sister have noticed and commented on the change in me since starting the AD(H)D medication. We still have fairly frequent misunderstandings, and I don't "feel" anything "noticeable" from the meds (I'm not sure why they're so highly classified and I keep having to sign paperwork everywhere and show ID to locum pharmacists who don't know me), however my sister and I don't seem to fall out like we used to, she said I was "more tolerant".

I don't know, but perhaps as we on the Autistic Spectrum appear to have "comorbid" conditions, maybe your son might have elements of AD(H)D and would benefit from that ilk of medication?

I wish I could suggest something which would aid you, but I'm on the "other end of the stick" so to speak, my mother would be better suited to speak, however she refuses to use a computer. Hopefully you will find other people in this community on this forum able to assist and address your issues with practical advice. Perhaps also your son may benefit from joining here? I have only been a member for a couple of days, but can honestly say I have felt welcomed and understood in a way I have not ever before (in my recollection currently at least), and that alone has genuinely been of comfort to me.

I wish you all the best.