20yr old m son with aspergers... i cant cope!

This is such good news, 'beenthere...' Really hoping things just get better for you guys. Take good care Y/LX

Excellent news! Thank you for letting us know.

Usually, after a meltdown, I feel like this:-

I am mortaly embarrassed that, once again, the beast has taken me over. It's like having two of us in my head, and I really don't like the other one but don't have any strength to fight it down. It's an overwhelming force, and it's horrible.

In the aftermath, I'm excrutiated by what I've done. Depending on the circumstances, I'll feel that I've made a fool of myself, that I've been acting like a two-year old in a tantrum, and I'm thoroughly ashamed. The hardest thing is to admit all of this, even to myself, and I've had to come to this understanding very late in life and sadly too late. The people who would most have benefitted from finally finding out who I am have all passed away.

I think that in this way, you are lucky to still have each other and lucky to be able to tell him it's OK to be him, but I appreciate that 'luck' is relative!

Under these circumstances, the most helpful thing I've never had is someone close to tell me that they understand, that it wasn't my fault, and that I am loved and wanted, and just cuddle me better. I think your son is lucky to have your understanding, even though you've been emotionaly wracked and wrecked by the experience.

I think that above all else, your attitude (today is a new day, tomorrow could be better) is lovely, and I hope it sustains you all.

Best wishes to all of you

5 weeks to the day.. he emerges... He just had a melt down... its as if nothing hs happened.... At least now we can talk... I explained its ok to have a melt down... he just needs to remember that were here for him... Its ok and that he will come out the other side of it.. Maybe now is the time to start looking for support for him... not on;y for the aspergers but for the ensuing depression... When you do nothing.. you have nothing to fill your day.. it then becomes pointless... I understand... Today is a new day... hopeully tomorrow will be better .. thanks for sticking by me peeps and for the support and words of wisdom

I totaly agree about Tony Attwood, I've taken to The complete Guide easily for much the same reason - he really does have an insight.

I think it's really tough to have a 20 year old in this state, and helping him is going to be quite a task. I don't envy anyone having this situation, especially as it's so sadly common.

The OP wanted suggestions on a postcard for what to do next. My aim on this, and the other similar thread, has been to suggest that there are things to be done. There are no magic answers. No one single thing will transform the situation but that does not mean that nothing is worth doing.

The mind is a "plastic" organ that can be trained and educated to hold different opinions and to understand how to change the way it thinks. The plasticity is limited and it has to work against its natural reflexes and the contradictory messages that it receives. This is the principal behind cognitive behavioural therapy. The brain can change its mind. It can enter a state of depression or anxiety if it receives enough discouraging messages. It can recover from this state of depression if the onslaught of discouragement abates and it realises that the future is brighter, more managable, more optimistic than it thought at its lowest ebb. Some people are chemically predisposed to depression and some of these people respond to drugs. People with Aspergers typically don't respond to drugs but they are often equipped to deal with exogenous depression medical-dictionary.thefreedictionary.com/exogenous depression through CBT as they have intact cognitive abilities.

For the CBT to work it is likely to be necessary for all those in contact with the subject to learn the principles and to make every attempt to assist this process. The battle lines between the subject and family have to be torn up. Hostilities must cease. Exhorting the subject to try harder will be counter productive as the subject is likely to be defeated by failure.

In addition to learning about CBT, it is useful for the close family to study Aspergers and Tony Attwoods complete guide is the place to start. I have been slowly reading this and came across the section in it on why people retreat to their bedrooms. So much of the book reminded me of my own childhood, almost every paragraph describes the things I did and the thoughts that I had. Tony has got right inside the condition and I believe that a thoughtful understanding of the condition can only help in trying to unpick the tangled mess that has developed in these reclusive hermits.

I have an unwavering conviction that these people should not be abandoned to their apparent fate.

CC touches on some valid points about why these kids end up like this. My main comment on that is that it agrees with the idea that an individual's history leads to different degrees of morbidity. I believe that it follows from that that it is likely that changing the individuals future path will change their future degree of morbidity.

There are agencies and individuals who can help these processes. NAS can help identify how this can be done and how it can be funded if necessary.

None of the above is quackery or outwith current conventional psychiatry or psychology. None of it relies on miraculous mystic powers and equally, none of it will have a dramatic overnight transformation. None of it will cure the Aspergers. That is as fixed as a person's intelligence or skin colour. The processes take time and patience and understanding. Please, do not surrender, the struggle will yield results. There is no place in this struggle for guilt or anger. Except, if you do nothing then you will always wonder what might have happened and I would be angry that a vulnerable person had been abandoned. The past cannot be changed but the future is a quite different place.

Firstly, I would like to point out a provision of the Data Protection Act. It specificaly provides that information about a person can be shared, provided that the intent of the sharing is for the sole benefit of the subject. The Office of the Information Commissioner will happily explain this point upon enquiry.

I therefore find it difficult for Universities, indeed any establishment, to quote the Data Protection Act as if it is an absolute - it is not, and it's about time more people were aware of, and used, this provision. I would think it essential that when an AS person leaves home (including all that is familiar, and provided) and is thrown into being a largely self-supporting adult, information regarding their welfare can and must be shared.

I find it incredible that any parent doesn't bring their child up to be independent and self-supporting. Nevertheless, Dads and Mums often undermine this process with a misplaced sense of duty, so they keep cooking, cleaning up after them, doing their washing etc, when they could have been teaching people how to look after themselves. Suddenly going from a fully supported to an unsupported lifestyle can be traumatic at best, imagine how it affects AS people.

I've seen 'disabled' people on TV who achieve incredible things, and the common theme is always that from day one, their parents have done everything to encourage that person to do as much as they can, not given their limitations, but rather emphasising their abilities and their responsibility to use them to circumvent limitations - sort of 'look for a way, and you'll find one'.

I endorse everything Longman says. We have a different set of rules for ourselves and the world around us, and we cannot be blamed for the unsanity that surrounds us, nor will a sticking plaster approach suffice. We need a holistic approach to our needs, but we don't get one. The false use of the Data Protection Act is a prime example - NTs just can't be bothered even to understand their own Laws. For my part, I fail to understand why universities continue to aggressively hide behind this lie, but, doesn't it save them a lot of bother? So much for levelling the playing field...

A child is only a junior trainee adult. Sooner or later, every fledgeling must fly the nest. The time to start is when they're born, not when they're 20, or to give a famous quote 'give me the child untill he is 7, and I will give you the man'.

If you have a solution I think you ought to publish it.

My scepticism, other than my explained perspective, is that parents have been offered many "solutions".

Various schemes have been running that supposedly sort out autism issues in primary or secondary school years that promise to change the autistic attitude so that they will have better adult lives - coaching, diet, medications.

The tragedy is that, after all the money spent (and some of these "solutions" are ridiculously costly) there's little sign of the adult revolution. Part of the problem is TRANSITION - what happens come 18 or 21.  We've only really started tackling this in the last few years, and it is very clear that the transition to adulthood is, in itself, such a change factor as to unsettle many young people with autism before you add on further/higher education or work.

I'd like to find a solution to higher education. Unfortunately as I explained above, we are stuck with the accursed social model and its "level playing field" concept - all you have to do about disability is stick a few wedges in here and there so the disabled supposedly have an equal chance - eg 15 minutes longer in an exam, having a note taker, being given off white handouts etc.

It is the same in the workplace - the social model rules.  You just make a few compensatory nudges and the rest is easy. No it isn't.

I wish I could change this view. I wish I could get adjustments made to the learning outcomes in assessments to resolve the issues young people with autism face. I wish I could raise the profile of this so parents knew more about the hurdles that people with autism encounter in further and higher education and in work.

I cannot because I'm up against the social model - whereby any suggestion it doesn't provide all the answers is now almost heresy.

Added to which I cannot get a platform - I'm a person with aspergers who, for all that I have experience of higher education and disability support in higher education, my judgement is deemed compromised. So I cannot get into a scientific journal just on the basis I did a bit of work with this at a uni and I've also got it! The attitude of professionals to people with autism having any capacity to help understand it stops progress with better understanding autism after transition. I could name names...but the Mods would stop this posting.

I just don't understand people who keep preaching that coaching people with autism will solve most of the problems. Where is the evidence these coaching quacks have really been successful past transition?

And NAS needs to start listening - reading what we discuss here.

Longman has long experience of the academic environment and has seen how hard it is to retrieve the people that fail to thrive there. I think he sees that there are few tools and techniques for retriving them and setting them on a better path. I think I have a more optimistic view that the fixed autistic component of the person is smaller and that much of the bad behaviour of these people is learnt and can be unlearnt if you can find someone with the time and the insight to unpick the tangled know that they resemble.

Please keep contacting NAS directly and asking for help. I believe that they do have services that can identify the relevant local services (LA and NHS) that have the ability to retrieve some at least of these people.

The stalling points for people on the spectrum going to college or university are quite puzzling and quite complex.

Parents lose control of the situation, which they may have had right through school, because the lecturers are usually not allowed to talk to parents (breach of confidentiality) and I'm not sure disability support staff sufficiently understand the issues that can arise. Consequently a lot of good experience never gets set down.

In school the teaching environment is regulated, its the areas out of sight of the teachers that are hardest to cope with, although poorly trained teachers, as regards autism understanding, can do more harm than good.

In a university the time away from staff is a whole lot safer, but the staff-student interface is tricker. This should have been resolved by now, but the "level playing field/social model of disability tends to exclude the lecturers and tutors, who are supposed to walk in-talk and walk out, and leave the support to student services. It doesn't work, not least because the teaching staff are also the assessors, rather than some remote exam board.

Particularly most universities still argue that all students must meet all the learning outcomes - no exceptions. It is just that students on the autistic spectrum often cannot deliver to that level of rigour. You have to write assignments in a certain way, argue a case with evidence, demonstrate a thought process or an investigative process. These concepts are devilishly hard for autistic students to fathom. OK many non-autistic students struggle with this, but it is particularly cruel for those with autism.

You cannot just spout knowledge - lots of information, or miraculously quick thinking out and getting answers, or a lot of aptitudes that autistic spectrum students may bring to university. I have astounding recall. I can reproduce tables and diagrams from memory in exams. I did great in first year then started to get into difficulties because I didn't latch on to the fact I needed to demonstrate procedures and rules of thought. It took me a long time to master this. Many students on the spectrum are completely thrown by this - they see it as unnecessary or illogical. If they keep resisting they quickly get into trouble. A common reason for university drop outs with autism is not being able to complete assignments. They just do what they think is getting the answer, and ignore what they are expected to do.

Related to this a lot of students fall down picking the wrong degree. An aptitude for numbers is not enough to do mathematics, especially pure maths, which is so abstract and theoretical that it seems to be bad for people with autism. Just because someone is really good at computer games doesn't make them obvious candidates for a computing degree. You have to do all kinds of aspects of computing to complete a course, and computing is notorious for the number of autism failures. I wish I could convince parents to be especially wary of these two subjects.

University teaching is increasingly about challenge. The old style long tedious lecture, with some old duffer droning on, has gone out of fashion. Lecturers are supposed to challenge, confront, baffle and inspire students, and increasingly they try to do this through discussion groups and group projects where the students work through problem solving exercises to learn the concepts hands on. Group work equals hazardous for autistic spectrum students. But even lecturers who talk through the material can be much more aggressive and provocative - that can be hard on students on the spectrum.

I repeatedly express concern here - though I doubt NAS decision makers are listening/reading my missives, that there is insufficient understanding of the university teaching environment and the effect it can have on students on the spectrum. Some thrive on it, others hit the wall in second year if not third year.

Therefore I think it is worth trying to find out, from talking to your son, what it was that caused him to drop out.  It might help. I think a lot of students who drop out don't understand why they seemed to fail, and it hurts them badly

Hi there..

In light of your comments...

My son dropped university over a year ago now... I honestly dont think its the academic pressure which has led to this current situation.. Im totally flummoxed as to why this retreat has occurred.. 

Whilst i agree that these situations are often reported.. there are very few reports of how to resolve them or the support that was provided to assist in the reintegration of the young adult.... It always seems to be the same thing.. wait and see.. give it time.. allow them to work it out... 

Well for now.. thats just not good enough....

There's been a discussion on another thread with a similar beginning (Parents and Carers - Son with ASD with social anxiety etc).

Well I say there has been another discussion as original poster hasn't replied and may have been put off - it is two of us (adults with diagnoses)_ arguing the point about whether these situations are avoidable. I'll not repeat it here - you can view if you are curious.

The point is this kind of situation happens a lot. It is very frequently described on here. But there seems to be no advice around.

I thought I'd ask though, what went wrong at university (and Grumpy old man, with regard to college) because it is things like that that seem to have a lot to do with it.

Sometimes university is a boon, because the liberation seems to make young people on the spectrum blossom. But then the problems come post graduation, when the jobs don't follow, which is soul destroying if you've fought through to a degree.

But others do seem to do well getting into university, then run into trouble, usually second year, when aptitude for university study tends to conflict with autism traits. Or else things go wrong in first year.

I wonder whether the pressure to get through GCSEs and then A Levels, if university proves too much of a hurdle, causes massive disappointment and defeatism. That seems to be what happens if success at university is followed by prolonged unemployment. The intensity of fighting to get through increases the risk of what is termed by some "aspie burn out" - the ability to cope under prolonged stress causes a relapse.

University tends not to intervene so much on committment to attend lectures and do assignments. They aren't chased so much, so they fall behind faster and get overwhelmed. Also the learning contract is with the student (similarly at college) and it is thus harder for parents to find out when difficulties arise until things have gone too far.

So I thought it might be useful if you discussed between you on here what factors hit at university or college. I would hope there are other parents who could join in on this, and also younger participants with autism who have seen thios for themselves recently.

I wonder if hitting a wall, academically, might be what causes these intense retreats.

Also I do feel that the reasons for these early life crises needs to be better understood. As I said at the start, they are very often reported.

Well.. tomorrow will be 3 weeks since i have laid eyes on my son... I have tried... I have contacted the helpline.. came up with some good ideas...but ive had enough.. i want to batter his door down.. take the hinges off.... set the fire alarms off... something to spark a reaction.. something... I feel so lost.. enough said

Hi Kev.. 

Its kind of spooky isnt it that we both have sons in the same position... Im sure you also feel like me and feel so frustrated at the system.. the way things are done and yearn for your son to have a worthwile and fulfilling life.. It all seems so bleak when they wont interact.. I hate the saying you can take a horse to water but you cant make it drink.. Its so true though in our situation.. I love my son dearly.. i understand that life can be harsh and difficult.. let alone being a young man with hormones raging, not understanding whats going on in your life and being able to make sense of it all.... Sometimes i onder if they understand our pain.. Not our aspie kids.. the system and the so called support network.. It was a lot easier when he was younger... For now... all i would like is for my son to talk to me.. Its been 2 weeks now since he started staying in hs room all day and not coming out till we had gone to bed... eating his meal which i leave him and then nothing.. 

What can you do? i dont really know... i think to myself.. if i contacted the support people... ie NAS or social services.. what more could they do to get him out of his room.. well at the moment i suppose nothing.. The services round here are pretty poor to say the least.. For the time being.. im playing the waiting game.. Hes not stupid.. Im sure he will   come round when he is ready.. Its certainly good to know youre not alone 

Hi,

I have just joined the community and was about to introduce myself and write the exact same thing you have written beentheredonethat. I can so understand. We have a 20 year old son who does the exact same thing. we are at our wits end and don't know where to turn to. Like your son he simply sits in his bedroom, day in, day out. there is no spark of interest in anything. He flunked out of collage and now simply lays, all day, on his bed. We have no support, no help and at times have been reduced to tears, we cannot cope. He will not do anything for himself, will not look for work, will not even sign on. We have to do everything for him. i am sorry, I certainly don't wish to hijack your thread and will start my own once I compose myself. i just wanted you to know, you are not alone and if by simply discussing this some glimmer of hope can be found then lets hope so. Kev.

Well.. come tomorrow.. it will have been 2 weeks since i had any interaction from my son... Ive not seen him or spoken to him.. although he is here... still in his room...Ive had no washing from him.. he comes down when were asleep.. eats his meal... washed up his plate and thats it... I have tried texting him.. leaving notes under his door.. messaged with his meals asking him to talk to me... I just dont get it.. Its depressing me so much... all i hear is tapping from upstairs... and the occasional shout at the internet when it goes down.. or bash on the floor... How can i get throught  him? Im fed up with being told hes a adult now.. we cant make him do anything he does not want to do.. but on the other hand.. hes obviously not a threat to himself or others.. How long do i let this carry on.. Part of me wants to batter his door down.. part of me says its his right as a person t5o live his life the way he wants to.. Maybe what i think is not for the best.. i just dont understand anymore

Hi Pogleswood,

This is in no way a criticism but we try to avoid swearing in the community so I've removed some of your post. The commenting tips can be found here http://community.autism.org.uk/rules/commentingtips

Sofie Mod

Yikes that is heart breaking. I have no words but there's plenty of support here if you need to off load. I'll give you a little insight into my last 3 weeks - it might make you smile.

So my daughter has epilepsy as well as Asperger syndrome. She is very well controlled & hadn't had a seizure for 4 years until the 28th September. She almost lost  her bottom four front teeth ( they are still a bit wobbly ) - which was a cause of great concern for me as she doesn't do pain or change & her teeth were both of these. 

So we ended up at the emergency dentist at the hospital - they were brilliant. I was in pieces as I thought she was going to lose her teeth & it was my mum's 2nd anniversary too. They assured me that they should settle down & we made an appointment with the orthodentist in the room next door for the Friday  - he sorted her top teeth last year & luckily we were still under his charge. Anyhow we survived until the Friday - soft food & lots of cuddles. I think she thought he was going to fix them there & then - I knew it was no quick fix. 

So she was so disappointed when told they would have to wait to see how they settled before they could decide what to do. Also the day before we learnt a boy in the year below her at school had died of a massive fit - so she was not in a good place at all. So picture the scene - I'm at the desk making an appointment for the following week & shes crying her heart out shouting " my mate died " with the dental nurses trying to comfort her. I then gave her a cuddle & accidently tapped her head with my handbag & she went off like a rocket & screamed [removed by mod]. She then ran out passed the hearing clinic & shouted [removed by mod] again - just in case they missed the first one ! I didn't know what to do it was awful. 

Apologies for super long post & I'vd typed on my iPhone so there's probably lots of typos. Hope I've made you smile a little bit - hang in there - I know it's hard. 

Thankyou for your c oncern.. Please tell your daughter she seems a very caring person... As for my son... well it has now been 10 days since i have seen him.. He comes down still when we are asleep.. eats his tea that i leave for him... clears up and thats it... This evening i dont know whats happening.. he asked me for his ESA paperwork (which he asked for by text) which i sorted for him and put under his door with a note saying i love him and am here for him when hes ready.. He left the house a hour later... No notes.. texts... good byes.. im really not sure what to do.. Part of me says hes 20 and a young man and maybe has a good reason for doing this... Part of me says.. what on earth is he doing and how dare he go out wthout letting me know and telling me what time he will be back or if he will be back.. If i contact him .. im interfering.. If i let him get on with it... Im not being responsible... There is no winning in this situation.. We just have to ride it out... Today my husband who is amazing... Exploded at me.... so my emotions are frayed to say the least... I can understand that he is also worried and it must be affecting him too.. but im his mum....Im angry.. upset.. frustrated.. tearful.. and scared if whats going to happen next... Im so sick of hearing hes over 18 and we cant do anything if he doesnt want to... Today is one of those days when you think.. hey ho why dont i just give up... 

I really hope things get better for you as your situation sounds so desperate. I told my AS 16 yr old daughter about your son as she too hardly leaves her room. She now asks me daily if I've read any more about him & is really concerned.

Best wishes & I hope you get some support. 

The future may not be clear at the moment and you may have to 'run' with a few ideas which may/may not work. I think if you have the support to keep trying then that is half the battle. Speaking to the right people who understand is key - friends may not fully understand which can make things very lonely and isolation makes it harder. No - one will condone or criticise you here  so don't be afraid to ask for help/ideas. If you have a local 'carer's centre' they will have someone you can off- load to or get a referral to a counsellor from your GP- just talking things over will give clarity. 

Best of luck, X