parent of a 21 year old with Asperges and ADHD

Hi

My AS son, aged 23, lies frequently and I also find this very difficult to put up with and to understand. My son is currently functioning very well in most respects but he had to leave university as he didn't do the required work or attend the required exams, while telling me on numerous occasions that he had written the essays, and had attedned the exams.

There have been dozens and dozens of other examples over the years. I think it is a) avoiding immediate stress, even if  it causes more subsequently, and b) (relatedly) the theory of mind thing, ie not apprecitating the consequences of actions /not thinking about or understanding the impact of his actions for others or current actions for his future. We just keep on working on it, but it is exhausting.

1) We try to avoid putting him on the spot, as it were, whenever i can. Work on building a supportive relationship while also being very clear and firm about agreeing 'ground rules'. We want to help. We don't judge him, etc. It's him and us together facing the world. not him being persecuted by us and our expectations/demands/aspirations for him.  We are aslo sometimes explicit about our feelings/ consequences of his actions for us: e.g. feeling let down, feeling exhausted, feeling we can't trust what he says, worrying that this will have a detrimental affect how others see him, potential for serious adverse consequnces.

2) With important things, we agree with him in am emotionally nuetral but clear and explicit way, that we need evidence of whether expectations/agreed actions have been done (rather than his word). This is not infallible, as he goes to some lengths to create duplicitous evidence. He is bright and creative and an amazing deceiver. (So much for people on the spectrum always tell the truth!)

Sorry it's so tough for you.

Thanks Longman and Recombinantsocks , really interesting points. I also felt that ToM might offer some areas of consideration but was quickly dissuaded due to his levels of empathy. His caring and consideration is one of his lovely qualities but on the surface could be at odds with his condition. However, it is only when he wants to and generally when there is someone other than his parents around. He has over the last 3 - 4 years started letting other close (to him) family members see flashes of his temper, self centredness and laziness but to the majority is he a charming, confidant, chatty and knowlegable lad, my sister-in-law (until he stole the DVD's) says he is like a well behaved child. Once diagnosed I did a lot of reading and asking questions about Aspergers and we did try to moderate our more laid back stance on life and offer H some firmer guidelaines and bounderies, (teeth cleaning, bathing etc.) this was absolutely disasterous. A further chat (cry for help) with Aspergus EA was where PDA was mentioned. If you have read that then you will, mostly, have a handle on my son after all the reading I have done over the years I can't believe that there actualy is a definition that fits him. Not that it helps, I tried turning all requests into a format that would make it to his benefit but for daily routines like general hygiene he wasn't having any of it. He does not clean his teeth, he has really bad gum disease now, his teeth often bleed when he talks, amazingly he doesn't have toothache, subsequently he has really bad breath. He does not bath or shower without one of us stadning guard outside the bathroom door, and even then the bath and floor might be wet but he hasn't been near the water. I think I probably find this one of the hardest aspects, he looks and smells a mess, people have to look away when he speaks of move apart from him and it doesn't seem to bother him. We make a point of complimenting him when his hair is washed, he has cleaned his teeth or he smells nice. This is normally when he has a gig and I rock his hair up (very 80's) and he dresses up.

Sorry this is not answering your questions. He is on benefit, not job seekers but a work related one, and gets £200 a fortnight. We take 25%, supposedly as food and accomodation but which we hold in a seperate account and has paid for his driving lessons, car and insurance so far. The rest is his, so the roaming charges came out of his bank account and as that left him with no money he told us that he had not been paid his benefit. He stayed with this story to the point of phoning the benefits office twice until we spoke to them (with him beside us) and they said he had been paid and to contact his bank. He then said he might as well tell the truth and told us about the romaining charge, which was our fault as we have restricted Wi-Fi access in the house until evenings.

Computer games, I wish, they would at least be interactive and make his brain work. H's current telly addiction is Top gear, the same one over and over and over, and the reason for his roaming charge. Previously it has been Red Dwarf and Mrs Brown's boys. He has a PS3, Wii and another games console that I can't remember the name of, which we have encouraged the use of but apart from Wrestling games and the occasional game of darts he isn't interested, he will watch the car ones ie Need for Speed, and when on line with the PS3 he would watch others games play but not play himself. He has mates, school, college and Princes Trust but makes no effort to contact them or meet up. My husband and I are both active, he is a musician, I cycle long distance and we both Bell Ring and we have encouraged H to have hobbies and to excersise but he gets the kit and gives up, apart from playing Bass he does like that, he is interested if in the right band but Top Gear takes presidence over practise. Oh the stolen DVD's was really tricky, I didn't know how to handle it or if I did right but I made him take them back and apologise to both his cousins and his Aunt, we restricted access to screens of all sorts made him purchase a new DVD for them and had a lengthy talk. I asked him what he would have done if his (another) cousin had done this to him, setting the scene exactly as he had done, and his reply was that his cousin would not do that as he loves him!

Finacially we are in an okay place, we can afford to pay for help if the right kind of help was available but it is his future that terrifies me as I said we adopted so I am an older parent, 57 and while I am very fit and healthy I am assuming he will outlive me by a lot of years and call me selfish but I would like to have time with my husband in my retirement without the constant worry of what he is doing. I believe he should have an independant life at some point but how do I move him along that way?

Sorry I know this is all very long and tedious but I appreciate the listening and ideas.

Hi DiB

Thanks for giving us more detail to consider. He sounds like hard work but I hope you find some useful help on the forum.

Longman's advice, which I would support, refers to delayed Theory of Mind and I would roughly translate that as H having not grown up properly yet. Many teenagers act irresponsibly and fall out with their parents in their late teens. They then leave home and start fending for themselves. This happened with my eldest (it's me that's on the spectrum rather than my sons!) and he was thrown in at the deep end and discovered for himself how the world treats you. We had been protecting him by putting a roof over his head, providing food and pocket money so his arrival in the world, where you have to buy your own food and pay rent, was a bit of a shock. He survived this very well and has come out the other side as a much more mature young man who is now really a good and trusted friend. I'm not recommending that you throw him out though! I suspect that he might not cope at all well and that he would be eaten alive by the harsh realities of the world as he sounds more like a 10-12 year old in his behaviour rather than a 21 year old.

Somehow he needs to learn the rules and boundaries. Somehow you have to determine rules and boundaries that he can abide by. i.e. this is a two way process where you might have to set different rules for him compared to a normal young person but he still has to learn that stealing is very wrong and that there are consequences. What sanctions did you apply when you found that he had the DVDs?

How do you set his budget? What happened when he incurred the roaming charges?

Obsessive computer gaming is a common problem for people on the spectrum. If you are unsuccessful with dealing with real people then the computer screen gives easy relief and reward.

It sounds as though he should be getting DLA/PIP and possibly carers allowances as he does not sound mature enough to survive without significant assistance in the real world. If you got some part time specialist help then do you think you might have an easier time? This doesn't come through the health system as there isn't a disease that can be treated but it sounds from your description that he has real problems that could really benefit from some real assistance.

Tony Attwood's Complete Guide to Asperger's Syndrome has a very brief reference to lying under Theory of Mind (ToM), but on looking at it, it might make sense of your son's situation.

It may be "to deceive people and avoid anticipated consequences". I surmise that, if you live a life where you are often in the wrong, by virtue of the disability, it comes easier to avoid the negative impacts by lying, however absurd this tactic might seem.

"due to impaired or delayed ToM abilities, the person with Asperger's syndrome may not realize that the other person is likely to be more offended by the lie than by any apparent misdemeanour."  This might sound strange, but people on the spectrum really don't get much feedback of people's reactions and it may be as a consequence of that that he may really not realise how bad his lying sounds to you. Again you have to consider how many negative blows to self-esteem a person with Asperger's gets in a day - it is amazing how most survive at all. 

"lying can aso be a way of maintaining self-esteem", especially if he comes to feel that avoiding mistakes at all cost is preferable.

It might be better to try to find out why, other than the above reasons, he prefers lying. Can you ascertain the damage to self esteem that he experiences? What is happening to him, not necessarily things you'd know about, in his relations with others including peers and other people's reactions? Any bullying/public ridicule/people taking advantage still going on?

Money matters have been discussed on here a lot, so worth searching the community, the search box on the left. Again profligacy might be a counter to low self-esteem.

Time on the computer is an escape from harsh reality. 

Thanks for replying, I will try briefly to describe my son. We adopted him at rising 7, we were told he had learning difficulties. He was very small, size 18-24 month clothes, thick glasses for eye problems and cute. He would have 3 hour tantrums, wreck his bedroom and could be physically very challenging. After a long fight we eventually saw a psychiatrist ( through the adoption unit) who diagnosed ADHD. Medication helped and H said it helped shut off the voices. School was a nightmare but we all survived primary school (great head really cared). We moved him out of mainstream high school after a number of disasters and fought the LEA to fund a specialist school. 

The Psychiatrist saw H until he was 18 although she was children's services and he was out of her remit and in her hand over letter to our GP she dropped Aspergers into the mix. We then had a nightmare time trying g to get his medication, the GP said he couldn't prescribe and we couldn't get a psychiatrist. The Mental Health nurse took pity on us and said she could try for help based on the aspergers. H went to the aspergers East Anglia group meets for a few weeks and then said they had closed and he wouldn't go anymore. I did have many chats with them for guidance on how to help my son and they suggested his actions sounded very much like PDA and  gave me some really interesting reading. I did do an OU psychology degree when we couldn't get help as I thought if I understood then it might be easier. Nothing I read there sounded like H but he fitted completely with PDA, even H recognised himself in the leaflet. Leaflet in hand we again hassled our GP and eventually saw a psychiatrist who agreed with Aspergers but wouldn't be as specific as PDA as it was only just being recognised. He suggested anxiety tablets and these do help H is more able to do things, he has subsequently passed his driving test, been on a Prices Trust team builging course and is now a Music College and loving it. The problems are when he is not a college, he does nothing apart from sit in front of a screen. He will do 9 hours without moving, no food, no drink and no going to the bathroom. The inactivity makes him argumentative and the animals avoid him. His face gles gaunt and his eyes hard and his default setting is lying. He is unable to control his on line spending, this month he has spent £179 on iTunes and when restricted from his studio and screen watching during the day £200 + on data roaming on his phone. 

As he has got older he has got harder to understand and help, he protests that he is an adult and should be allowed responsibility but he takes no responsibility for his actions. It is our fault he spent the money on data roaming as we restricted his use of our network, it is our fault that he spends so much on iTunes because we won't let hIm have Netflix on his telly. He is a good little bass player and in a band ( as is my husband) he likes being on stage and dressing like a rock god but he doesn't like practising so he does make mistakes but it is the bass not liking him or the drummer out of time. The lies and blame shifting are never ending and I am finding this more recent characteristic extremely hard to live with. My sister in law tried to give us a break for a couple and H and her 2 teenage sons camp in her garden, once home again she phoned to see if he had 3 of her youngest sons DVD's, H swore blind he had Not seen them but they were sitting on his study floor in full view. His explanation was, eventually, that he wanted them and didn't think they would  notice. Sorry going to stop as there is so much.

As to what help, that wil be none. Adult social services will only get involved it he is in danger, the doctors can't help apperently as he has not got a mental health issue, family and friends can't help as they find him too hard or a bit scary. I fear for his future, I cannot see him ever being able to live alone and the future continueing like this ad infinitum well ...

Perhaps you could tell us a little more about his abilities and behaviour? Does he have a support worker? Are you using all of the available benefits to lighten the load on yourself?

What does he say about his own condition?

Hi DiB,

There is a lot of mythology out there that if you pay for all the extra treatments and work really hard at helping your son adjust his autistic traits to the big world outside it will all go away at 21.

The frightening thing is that transition - what happens between 18-21 and onwards - is something they've only recently got round to admitting is a problem. You just fall off the conveyer belt. Somewhere out there adult social services does something - not altogether sure what.

Then there is adult autism - still denied by many GPs and health officials. If you've still got autistic traits as an adult you must have been doing something wrong - weren't paying attention - haven't tried hard enough. Adults on here will tell you how little sympathy they get - if you've still got problems...tough...

And then there's autism and ageing - getting old with autism - its just clicked that they need to research this!

It might take a bit longer, it might take a lifetime longer. However at 21, even though school is behind, the need to conform with peers is still strong. As he gets clear of that things may get easier.

I'm pretty certain that a lot of the harm in teenage years is that on top of puberty you have expectations to follow the pack. That's likely to be a large part of the stress. 21 is too soon to thinking that's all gone. 25 might be better.