lisa2701

It is not that I did not want to hear your advice but merely that I feel (rightly or wrongly) that I am being negatively judged for wanting to peruse a dx. Perhaps I have communicated poorly my thoughts and perceptions, perhaps I have misunderstood your replies. Either way, I feel this thread has gone as far as it should. I came to ask a simple question: does the symptoms fit, thus should we request an assessment by a person qualified to determine if my husband does have AS or doesn't. I was not asking people to analyse WHY we wanted to peruse an dx and judge me as a wife. If there is no point in assessments or dx's then whats the point in having them? Suze - Thank you. I think you make a valid point regarding strong opinions. Unfortunately I think the ship has sailed on me feeling welcomed and having been a previous lurker I will return to doing so. Thank you none the less. Lisa x

Baddad - I am fully aware that there are reasons beyond autism that may cause social difficulties. I myself suffer from severe social anxiety that has had a huge impact upon my life. As such I found it extremely anxiety inducing to post on this forum. I am struggling slightly with your tone, weather meant of not I am feeling as though I am being negatively judged here. i am not going to sit here and try to respond to your reply fully as I am getting myself upset over it. All I will say is that in NO way do i "disable" my son, I support him in every way, give him every opportunity I can give him and push him to be the best version of HIM that he can be! My expectations of my son are actually very high, I expect him to behave, be polite and do his best in school. However... when my son has a meltdown, they are really bad and he is highly aggressive during a meltdown, but there is no way I would discapline him for this as I can see for myself that he is not in control or even aware of what he is doing. If he is ever aggressive just out of naughtiness (which he has done) I can assure you he is disciplined for it. Weather we like it or not, there are "some" things that we have to make allowances for or change our expectations for, that is not disabling our children but accepting they have different needs/abilities to our own! Equally... my son is 6 and could read any book you or I could read and his maths skills are fabulous, thus, these are skills I have encouraged and spent many hours developing with my son. As for my husband I have stood by him through thick and thin, and I love him no matter what. I just would like to know how to support him best! You are wrong to assume that the counselling my husband and I went through didn't work, or that the issues we are facing were what we attended counselling for. In fact counselling was highly successful and we fully resolved the issues we were facing. My husband and I are in fact the happiest we have ever been and our relationship is strong, I do not wish to change him, merely be able to support him and understand him better as he does me. In my opinion a persons expectations are going to change if there is a medical reason for a behaviour or condition. It would be ridiculous for my husband to expect me to be able to do a lot of physical activity as I am now unable to do it. When we met I used to be VERY active (owned horses) .... thus his expectations of me have had to change over the years due to my condition! Darkshine - Thanks you for all your replies, and advice. It is much appreciated. I am sure my husband and I will manage to find "common ground"... assessment/dx or not. I am just going to end it there as I am actually frightened to say the wrong thing and have already said more than I had planned.

Thank you for all your replies, I am not going to try and reply to each person individually as I am overwhelmed and grateful with the amount of replies I have received. To pick up on a few things though; my husband has pretty much always been this way. As previously mentioned I have suspected from a very early stage (within 3 months of meeting my husband) that there was something different about him, this was even before my son was diagnosed with autism or we learned about the huge family history of it (MOST males in the last 2 generations, in other words my husbands generation and our sons generations, of my husbands fathers side is either diagnosed with ADD/ADHD or aspergers. Our son is the first to be diagnosed with classic autism). Yes, my son being diagnosed has opened my eyes to this being a possibility for my husband but not because I am looking for a label and the shoe fits, but because my perception of autism/aspergers has GREATLY changed since my sons diagnosis. Before my son's diagnosis I knew NOTHING about autism other than the severe cases you see documented on TV and i have obviously come to realise that its not always this case. Things have maybe changed here and there in our relationship, the extreme's of a behaviour, how he copes with them etc. My husband and I have worked very hard over the years through counselling, talking, and putting strategies in place to try find some compromise in our relationship, some things has gotten better and others not so much. I know most of what i describe is "typical" womens moans, but the behaviours I talk about are not "typical" in anyway. It is hard to describe and no doubt without seeing it for yourself it it hard to imagine. Despite everything I have written being negative, my husband does have some very good qualities. He is very supportive in ways other than emotional. I have a condition that leaves me with poor mobility, wide spread pain, and extreme fatigue (some days are better than others). Despite working full time my husband does most of the chores around the house ( I do what I can when i can), he acts as a constant reminder for me of appointments, events or medication, and he will take time off work to come to appointments with me if I have no one else that can come (he is a great physical support). I know i may have come across as being negative about him, it was not intended this way; despite being somewhat anti social with those he doesn't know well he is a good man towards my son and I. He lacks the emotional understanding of people, and being a highly emotional person myself I find this particularly difficult to cope with. Before my son's diagnosis I was struggling with his behaviour, embarrassed when out in public by his outbursts, and struggling to cope with them when at home. Discovering that my son has autism was life changing for me, and him no doubt (as his mum started coping betteR). Over night (literally) I began to cope. I could understand why he behaved in such ways, implement strategies to cope with them that were more helpful and specific to my son and I was able to learn to ignore the ignorance of those while we were in public thus I am no longer embarrassed or fearful of getting out and about with him. I know when has outburst it is not personal to me, he doesn't hate me or want to make life difficult, he can't control it, and that allows me to stay completely calm in situations of meltdowns and deal with them in a much more constructive and helpful way (obviously I didn't understand about meltdowns before diagnosis). Due to MY understanding of him getting better he has went from having daily (sometimes 3x daily) meltdowns to rarely having them. I feel that this could be the same for my husband. It is not that I think I would "excuse" behaviours that I currently find hurtful or upsetting, but I could understand them better and I wouldn't be hurt by them as I would know its not a personal thing. All this being said, I am completely open to the idea that my husband may not have AS. Maybe its something else....maybe its nothing at all. I would like to see him assessed but if it came back that he does not have AS I would not demand a second opinion and push for a diagnosis as if there is no medical reason behind his behaviour I want to hold him accountable for that! Sounds bad i know, but yes, my expectations of my husband would be completely different if there was a medical reason behind his behaviour as supposed to if there is no reason behind it.

Thank you for your reply darkshine, Unfortunately my hubby isn't one for reading, he says he can't take it in. I can, at a push, get him to watch documentaries, movies etc about autism but of course they all depict autism as your more classic and usually pretty severe so it doesn't help in his case. If there are any that you are aware of that may be of use then I would love to get him to watch things. Like I said, before autism/aspergers/ADD came into our lives I already thought there was something different about him. His own mother told my mother that she wished me luck as he's an extremely difficult person to live with, which to be fair, he is. His "traits", weather is be AS traits, or personality traits have put a huge strain on our relationship over the years, and it has taken me a long time to really get to know him. I totally hear what you are saying about sometimes with a little knowledge we can see things in people that we could think of as being AS when infact it is not, However, my mother (who to be fair is also knowledgeable about ASD and has done same studies as myself) also believes that my husband could be on the spectrum. Obviously I acknowledge that IF he is then it is a mild form of AS, rather than anything more severe. I do know that my husband had to have speech therapy as a child, for what reason, I am unsure. Unfortunately my husbands dry sense of humour, abruptness and honesty means that most people do not know how to take him. He has no friends (literally), his work colleges seem to get on with him but it has taken a long time for him to establish these relationship. He has worked for the company for four years, and its only in the last 9 months has he settled into a team (he has been moved shops etc due to not fitting in with teams). He doesn't speak to any of his family on his mothers side, including his mother. It is all or nothing with my hubby and after an argument 2 years ago my husband cut all ties with his mother. Although he occasionally speaks to his dad or family member on that since it was probably about 6 months ago that he last seen any of them as he doesn't like visiting people. . He doesn't enjoy visiting my family at all and when he does he often sits in silence and makes it perfectly clear via expressions/body language that he does not want to be there, he claims to be unaware that he is coming across as such. The only people he will visit is my best friend and her fiancée, however, again this has taken a LONG time to establish a friendship between them, it was only last year that he "accepted" her as such. He didn't want to know her before that, but she started coming around the house more about a year ago and so he was kind of forced to get to know her as she'd be here when he got in from work etc. When my son was younger he used to be DAFT on thomas the tank, he had every dvd, a massive track and all the trains. Due to my husband and son having a poor relationship I used to encourage my husband to play trains with my little boy. He would refuse to play trains as he (my husband) didn't like trains, so why would he play with them??? Maybe if my son wanted to play something he liked then he'd play with him. It sounds AWFUL to actually put that down but he just couldn't understand that it wsan't about him, it was about building a relationship with my son. This is a man who can run a busy high street shop but can't understand the concept of using play to build a relationship with a child, especially if it means playing with something that has no interest to him. I know no one on here can diagnose my hubby but the more I write the more I am convinced that we should at least ask for an assessment?

He's not sure. He is happy enough to go to the doctors and ask for an assessment but he doesn't know a great deal about ASD/AS. He knows what he has to for our son but ultimately I am left to deal with the doctors and schools and he trusts my opinions and thoughts on any matters to do with our son ( he see's me as more "qualified" as I have done studies at uni on Autism). He also feels I am better at dealing with it all and he has been known to misread a situation. He feels out of his depth with it all and so doesn't know what to think about the possibility of him having AS. I think he struggles to see himself as possibly having AS as he has gotten to 27 without a diagnosis, he holds down a job and has a family. But it took him a long time to find a job he could settle in and our relationship has been very strained at times due to his lack of understanding of emotions, ability to understand why others might feel differently to him and the fact he struggles to understand how autism effects our son and so sometimes expects our son to be able to behave in ways that is not always possible. Sorry, rambling a bit. Lisa x

Hi everyone From very early on in my relationship with my husband I have suspected there was something different about him. We have been married 7 years now and the more and more i am thinking he has AS. Our son was diagnosed with classic autism two years ago at the age of 4, and since then we have been reunited with my husbands father who previously he'd never known. We discovered that ASD and ADHD runs quite heavily in that side of the family. Although I know little about ADHD/ADD of the little I do know it doesn't seem to fit with my husband. Let me give you some examples of the type of things making me suspicious... My husband is: Socially awkward- people find him very difficult to read, he often sits in complete silence giving as short an answer as possible when spoken to. He often comes across as brash and abrupt and VERY often FAR too truthful for his own good (i.e. my sister brings home her new boyfriend for the first time and asked my husband what he thinks of her new boyfriends hair...he had a design shaved in his head... my husband with a deadly straight face replies "its looks stupid"... He doesn't understand why he shouldn't have said this. If he doesn't like someone/or something someone has said he completely withdraws eye contact(he has no idea he's doing this). He lacks any kind of empthay - He would never consider giving me a hug if he were to find me upset and crying, he says crying (even in children) makes him uncomfortable and often irritated/angry. He really struggles to see anything from someone else's point of view and he often gets upset if someone has a different perspective on things. He struggles to recognise his own emotions- he often comes across as angry or in a bad mood but when asked whats wrong he says he's perfectly fine. Even an hour later when he seems fine he will tell you that he's been in a great mood all day. He struggles to sit and have a conversation about things that are not of interest to him. He quite simply finds himself distracted by ANYTHING else in the room. this can even be during important matters such as what has happened at a doctors appointment with our son etc. He is pretty obsessive about computer games, he often stays up late after I have gone to bed so he can have his "computer time" and gets quite anxious if he has to go a number of days without being able to play it. He even wanted to take it on holiday with us, which he didn't but he would have had I been ok with it. He watches games on you tube and talks about them to me on a daily basis. He also LOVES sports.. which is handy as he's got a job working in a book keepers as a deputy manager and with is being sports orientated he loves it. I am sure there are stuff I have missed but you get the idea. i would love your thoughts on if you think it is worth perusing an assessment or am I way off base do you think? Would love your thoughts Lisa xxx

Thanks for your reply. I agree that diagnosing reflux and IBS is strange, in my sons case he wasn't even able to describe the feelings he got before, during or after he was sick. He is verbal but he really struggled to understand what the doctor was asking. I hope that melatonin helps with things. My son is on Melatonin and it does help him sleep. I have been back to the doctors and she has referred us to the hospital to have him seen by paediatrics. In the mean time she has prescribes domperidone to try to help. lisa x

Thanks everyone, I hope we can get to the bottom of this very soon, we've had a good day today, no sickness. The doctor i spoke to yesterday thinks that my son is suffering from bad reflux and possible IBS. They have given him gaviscone to help with the reflux but they don't want to treat him for IBS as they feel he is too young and I have an appointment to see my own doctor next week to look into things further. Only thing I will say is I suffer from IBS and its really painful so I am unsure if not treating IBS (if that's what it is) is the way to go. Maybe a diet change could help that so we could avoid medication, not sure. This is all very new territory to me. Is there tests etc that the doctors can do to test for intolerances to certain foods etc? How are they done, i.e. bloods, urine etc? Bid - thanks for that i will looking into it, thanks x

Not entirely sure to be honest, but if I were you i'd try sitting her down and explaining that lots of women have weak bladders and its nothing to be ashamed of and if she does have ones there is things like pads, pelvic floor exercises etc that she can get or do to help. If she refuses to talk about it maybe just say to her that you will buy such pads for her and leave them in a discrete place for her if she ever wants to use them just to go and take some she doesn't have to ask. That way she doesn't have to come and talk about it or admit that there is a problem if you know what i mean? Also, if you do buy her pads, you open the box so she feels she can discretely take one and not have to make it obvious by opening a box of them. i presume she is a teenager as you talk about her having periods, such a difficult age, bodily functions are just so embarrassing! Sorry wish i could be more help.

hi everyone, Ok so i have a 6 year old with classic autism. As a toddler he was often sick, sometimes daily, but this was usually when he was uspet so i never thought anything of it. He did have really bad colic as a baby. Anyway, the last 3 - 4 months now he has had repeated problems with severe stomach cramps and vomiting for no reason. i have had nights with him where he has been sick every 20 minutes the entire night but seemed fine otherwise, i.e. no temperature or obvious illness, we have had nights where he has only been sick once etc. Today he has brought up both his breakfast and lunch but seems fine other wise. Straight after being sick he is straight back to what he was doing before and it seems to come on fairly suddenly, he isn't lying around complaining of feeling sick, he just seems to be fine one minute and vomiting the next. Before anyone asks why he hasn't been seen at a doctor i did have him an appointment before but unfortunately we were unable to make it. So i am now waiting on the doctor calling me back right now. i have read that gastrointestinal problems is very common in people with ASD, wonder if anyone could shed some light on things for me? Thanks Lisa x

Yes you make a good point Justine. My son still doesn't sleep through the night, he's up at least once every night despite melatonin. We have tried talking to him before about moving and what it would mean but he never seemed to comprehend what we were saying , but we thought we'd try one more time and have just sat him down and spoken to him about he feels about it. Broke it down into small chunks for him, writing down some bullet points (he is very visual and reads very well) and this seems to have worked. As soon as I mentioned that a little brother or sister might make mess or cause noise he was horrified at the thought of sharing. So we have now managed to get him to understand and he says he would prefer a small bedroom than sharing one with another child who might mess it up. i suppose my decision has been made, ultimately i love the new house but was worried that my son would HATE moving from a large room to a small room so i felt really guilty, but seeing as he seems happier with not sharing I can move now without any guilt, and if for any reason we don't have another child the other room can be turned into a toy room/games room for him allowing him more space. Phew....so glad that decisions made, its been a horrible few days humming and hawing over it. Had one day I wanted to move, one day i didn't want to move and today was completely un decided. Its a hard decision at the best of times but when you throw ASD in the mix it just gets harder. Thanks guys, you both made very valid points! x

Thanks for your POV rainbowsbutterflies. DS says he doesn't want a small room but i don't think he realises what the alternative is, such a difficult decision, not only will i have to move him house but also eventually schools. Its a huge upset for him, but the house is bigger so its making it a really tough decision. hubby wants to move so its all down to what I want now.

hi everyone, i am not around very often to be honest but I do lurk occasionally and have a read through things. Thing is, i've found myself in a situation and as much as my friends and family all have opinions they do not live with someone with ASD so I am looking for opinions or thoughts from people who truly understand my point of view. So, I currently have a 6 year old boy diagnosed with classic ASD (high functioning in my opinion). Hubby and I are trying for baby number 2. ASD and ADHD/ADD do seem to run in the family on hubby's side (all of the males are effected in some way or another, including my hubby in my opinion although he's not got a DX yet) so I suppose we run a slightly high risk of having another on the spectrum. Currently we live in a 4 in a block, ground floor with two big bedrooms meaning any children would have to share a room. We have been offered a 3 bedroom semi detached house but it only has 1 double room and 2 small singles. The two bedrooms that the children would have are pretty small. So I'd love to hear your experiences and thoughts of having a child with ASD sharing a room, with such a huge age gap (keeping in mind I'm not even pregnant yet) as a posed to having two children is small bedrooms? I am truly torn as to what is best, one large room between them, or space of there own to retreat to if needed but it only being small? I know no one can make my decision for me, I am just looking thoughts, opinions, and experiences? Lisa x

Hi guys, I hadn't even picked up on the tension between you so no offence taken.

Thanks for the info, its something to be aware of if nothing else. I agree that i think stress is probably the biggest factor, given how difficult his school is being I can't see the school related stress getting resolved any time soon. The usual story of the schools not being supportive. Perhaps thats for another thread. lol. Thanks again for all the replies Lisa

JsMum - thanks for your reply. My son always takes water to bed with his as he always complains of being thirsty, i have asked the doctors to check this out, and they done a sugar levels test on his urine which came back normal and said nothing else would cause his thirst, just behavioural. His room is kept a comfortable temp as DS is sensitive to temperatures. We have a light that project up onto the ceiling, very relaxing and dim and Ds won't sleep without it. His bedding is the same as we've used for him for the last 3 years. He had maybe eaten a bit more cheese than he should've around the time the first sleep disturbance started, maybe that it? I had no idea that cheese could cause sleep problems. interesting.

sorry, just re read your message and noticed you said your son is on medication. What can i say, its almost 3 am and I can't sleep. The irony. I do hope you get a quick response to your request for help. xx

MelowMeldrew I think your situation sounds very stressful, i think that you done the right thing in asking for help. Have they tried things like melatonin? My son is on this to help him get to sleep at night, and its been a life saver. He still wakes several times a night but at least he getting to sleep at a decent time in the evening, and he rarely wakes for very long during the night these days. that being said, when he was younger he barely slept. I know they can give long acting melatonin though that helps to keep them sleeping. maybe that's an avenue worth looking at if you haven't' done so already? As for the episodes lasting ten minutes, i did sense a slight irritation in your tone to that... although I may be way off here and if I am I have to apologise. I would just like to make clear that the duration of the episode wasn't what was concerning me, but more that they were a new thing for my son to be having in his sleep. "Meltdowns" during the day are very different, often lasting hours and even once he's regained control the least wee thing can send it off again. I fully appreciate that sleep deprivation is extremely stressful, as i said my son barely slept until more recently, its only been the last three months he's been on melatonin to help him get to sleep at night, before that he'd be up until VERY late, often still wide awake when my husband and i were going to bed at midnight and then would get up several times between that and 7 am. I hope that you get help and a better nights sleep very soon. xxx

We had great problems getting DS to eat meat when he was younger. Now... his favourite thing is chicken. I cut the meat up into tiny tiny bits before giving it to him, so he didn't have to chew much initially. We then gave him rewards (pennies in DS case..worked at the time as he'd just got a new piggy bank) for eating a certain number of bits. Started off with one or two, building it up over time and we made a HUGE fuss when he ate it. He now LOVES white meat and fish, although red meat is still a bit of an issue if its not minced. I hope you find a solution, i know it can be worrying if you can't get your child to eat certain foods. Lisa xx

Thanks Bid, We've went a whole week without another episode (that i'm aware of of course) so i'm keeping my fingers crossed that it continues this way. Thank you everyone for your support. Lisa xx

Thanks bid, I think what i'm going to do is wait and see if it happens again and if it does just observe everything thats going on and as you said i will try get a video of it. Take notes and if i'm still concerned after that then i'll go to my GP and ask her opinion. Thanks Lisa xxx

Just thought i'd up date now that i've spoken to the Dr. She doesn't think it sounds like seizures, she thinks he's having sleep disturbances. She has said to keep a diary of them, and in future to keep an eye on the colour of his lips during an episode, but not to try to wake him. So what exactly is a sleep disturbance though? Just a nightmare? It doesn't make sense that i can't wake him. xx

Karen - Yes i agree its worth getting looked at. Especially as i remembered there is epilepsy on both sides of my family last night. Grand parents on both sides have it. I have called his Dr but she wasn't in so i am waiting either on a call back or I will try calling her again later this afternoon. I'll let you know once i've spoken to her what she says. Thanks again, Lisa xxx

Thanks Karen, I must admit I am very uneducated about seizures, my perception of seizures what of violent convulsions. I have spent the last hour or so, reading about and watching clips on you tube of seizures and its been eye opening. I had no idea there was so many different kinds of seizures. Admittedly it has brought a slight sickly feeling to the pit of my stomach. I am going to call my sons ASD DR tomorrow and discuss it with her, and hopefully she can point me in the right direction. xx

Karen - I have trouble waking him during one of the episodes (sorry not sure what to call it at the moment) and even when he has his eyes open i'm still not convinced that he's actually there. That being said, both times after 5 minutes or so of trying to wake him he's opened his eyes, slid (literally) out of bed and then got to his feet, which is why i hadn't though of a seizure. Thankfully it has only happened twice, but maybe as you said it is worth getting checked out. Is it best to go to my GP or would i be better going to the paediatric ASD specialist who knows about everything that's been going on lately? Melow - Have you considered something like melatonin, it has been a life saver for us. My son would go to bed at 8 pm but it would take until 12 - 1 am before he'd fall asleep and then he'd be back up during the night 2 or 3 times and then he'd get up at 6 - 7 am again. He's six in one weeks time and the last two month has been the best sleep we've had since he was born. He was put on melatonin, it doesn't drug him, simple helps him relax, you can actually see him unwind. He does admittedly still get up once every night, but he sleeps from 9 pm to 7 am with only one sleep disturbance....well until the "episodes" started, it has made a big difference. Lisa xx