blm

My son has finally seen the consultant (who confirmed he didn't think he had ASD and highly suspects Anxiety and SPD but would see what speech and language had to say). He has had 2 appts with speech and language and she has confirmed the same (although I would have rather she came to this conclusion without receiving the consultant's report saying he didn't think it was ASD as there would have been no influence then). However, very good news I think that they don't think he has ASD but now the task is finding out what he has got. The consultants report said Anxiety and SPD as his initial thoughts and the speech and language lady wants to do a school visit and will then write her report. She wants to delve deeper into the answers my son gave on his test the other day. He did a simple repeat sentence test and I was astonished at how little he can remember - I think he got up to about an 8 word sentence and then really struggled. I always thought it was not being able to tell us back in his own words (i.e. what have you just read about in your book) but it seems he literally cannot remember what he's just been told word for word either. Suddenly the penny has dropped with this to be honest as we are constantly asking him what people said (us, teacher, swim instructor, football coach) and he really really struggles even if its a minute after the discussion we've just had with him - most of the time he guesses if the conversation is about a similar thing. He is very good with reading, writing, spelling and maths but these are all visual (and we have known for a long time that he is very visual - even teachers have mentioned this). The main problem we are getting is crying in all sorts of situations and most of the time, completely out of the blue. I have looked into memory problems of children and it came up with CAPD (which I had heard of but knew nothing about). Having looked through a few pages on google, I can quickly see that most symptoms relate to him (although they appear to be very similar to ASD too - is that correct?). Does anyone on here have a child who has been diagnosed with this rather than ASD please? The consultant/speach and language lady haven't mentioned this to me but I want to make sure I understand everything about it in order that they test him for it at some point because as a mother I know there is soemthing not quite right in the way his brain works but it is just a case of knowing what and then we can give him (and us!) the tools to deal with it and lead as 'normal' life as possible. Any information/guidance would be great. I have looked for forums on this and there doesn't appear to be any. Thanks very much

Thank you very much for your replies - that's really really helpful. I have just had an appointment through for Speach and Language Assessment a few weeks after his appt with the Paed so I'm hopeful things might not take as long as anticipated - I have been told about 3 years by another parent (and they have rejected that he has anything wrong with him in the end). He has lots of issues: tics, sensory, short-term memory, explanation of things problems, issues understanding feelings, obsessions, anxiety issues, routine issues. I have listed everything and when things change or happen, I have kept a diary so I will ensure I take that with me as there are so many things, I can forget! To be honest, I am not worried about having him 'labelled' (as some people might say), I just want to help my son do the things other boys of his age are able to do without the problems he experiences (and we as a family then have to deal with). If life is stressful at 6, how will he ever cope with exams, being dumped by girlfriends, jobs, mortgage etc etc. Thank you once again for your help

Thanks for your replies on this one - it baffles me so 'any' suggestions at all will help me understand him so I can help him since he cannot explain why he cries! There doesn't seem to be a pattern of when he cries at football (apart from hard tackles which he will make) and it is normally at the beginning to middle of the game so I'm assuming it's not down to tiredness - we're quite good at making sure he has a carb meal a few hours before a game and he normally has a banana too so I think he is ok energy wise. We have noticed once he has had a cry he is completely different and plays brilliant. It's like the tears release something - maybe it's nerves and they come out in tears? He has been playing for Southampton FC recently (which is an amazing opportunity) and he's had two matches and hasn't cried at all! But in his local team matches, he cries at nearly every match! I'm now thinking maybe it's the build up of pressure on him (as he is one of only 2 good players in his team so he knows he has to perform because the others usually underperform) whereas in the Southampton match, he knows all of his team are good (as they've all been chosen to train/play for Southampton) so the pressure is therefore off. I haven't ever been into competitive team sports so I don't know how people feel in this situation. I do remember when I was a teenager there were a few girls who didn't like me (I was the quiet un-rough kind) and I remember having arguments with them and before I could even defend myself against their attacks on me (verbal and physical) I would start shaking and be unable to talk properly and want to cry - now I'm wondering if that's how he feels - nerves build up to such a degree they make your body react in a funny way. He cannot explain why he cries at all and if we make suggestions he will agree with them just to give us an answer (so I've stopped giving suggestions now!). The more I think about it, the more I'm inclined to think it's the pressure/nerves in football and the tears release these nerves but I don't have ASD so my thinking is different to an Aspie. The kickboxing only happens if he doesn't keep his guard up and he gets a knock (not forceful) so I'm thinking that's embarrassment tbh. I'm not worried about the kickboxing as he only goes for fitness / fun but the football is his real passion and one where he has a lot of talent which could potentially be wasted if we cannot help him control it. He used to cry when he missed a goal (now he's got over that one); then he'd cry if he scored and everyone cheered (now he's got over that one) so now it's the unexplained tears that will happen when tackling. He overcomes one hurdle only for another one to crop up. We've had other teams start making fun of him now and I don't want him to get this or he may become withdrawn and even more unconfident. Thanks again for your help

That's a very valid point actually - I hadn't thought of it that way. He is very similar in that if he doesn't get it 'perfect' it isn't good enough but he generally gives up after one attempt now (I am assuming he does this to avoid getting worked up by it). We have kept enforcing the 'practice makes perfect' and the more you try something the easier it becomes and he will sometimes try again but he does get upset if he can't do something (the "no such word as can't" statement doesn't work with him!). I will bear this in mind when it happens again and try to talk to him but it's difficult as he just tells us he doesn't know what made him cry or he will try to make up a reason just to answer us (even if it isn't the actual reason i.e. my finger hurts). He confuses the hell out of me sometimes so I can't even imagine what's going on in his head! Thank you very much

I have been 'looking' for triggers with my son's meltdowns (as he cannot recognise what things trigger his crying) and I have noticed at football he will do a really good tackle or run like hell to get the ball and no one will be hurt or anything and he generally does what he intended to do so nothing to do with disappointment but he will then burst into tears. Does anyone know if adrenaline can be a trigger with AS? I have also noticed that he does it when sparring at kickboxing too. Just trying to work him out!!! ;-)

My son finally has his initial appointment through to see a paed after me pestering the GP for years! They finally agreed due to his uncle being diagnosed with Tourettes (although I am convinced his uncle has ASD rather than Tourettes but he had a very quick referral/diagnosis - literally weeks). Anyway, they have finally listened and we see them in a few weeks. I have heard soooo many stories of the process of diagnosis taking a very long time but I just wondered if someone could give me a brief overview of what to expect at this meeting and the process thereafter. I am in South West area (if that helps). I have also been told that they try to find another reason for behaviours if there is a more obvious one and am slightly worried they will try their best to go down the Tourettes route rather than looking at him and his behaviour as an individual person. Has anyone else experienced this? This is all completely new and I want to make sure I am prepared (so I can prepare my son) and I don't want to ruin things having fought so hard to get this far (although I am aware that this is only the beginning of the fight). Thank you

Hi everyone, another question from me I'm afraid - sorry I'm full of them I know My son had a major meltdown last Weds and since then he has been much better with his tics and hasn't cried much. Apart from this meltdown, something which he has started doing in the house is kicking the football around - he will go back to kick it at every spare opportunity (before breakfast, between going to school, the minute he gets in from school and then after homework/tea) - not big massive kicks just little knocks against the sofa with it and generally moving it about with his feet - does anyone know if this could be a new way of him releasing his nerves and worries? Also, I am really really pleased that me and hubby are singing from the same hymn sheet at long last! For years I've been saying something isn't right and he kept saying he was fine. It got to the point where I was being a referee trying to explain to him why he was behaving the way he was but hubby just saw this as 'excuses'. I had a bit of a meltdown and asked him to read up on Aspergers and find out more himself and then we can talk about it and see what he thinks! He did one session of 'looking things up' on the internet and rang me - "I've been reading about the symptoms and i can see what you mean now, 80% of the things it lists is what he does/acts like isn't it". I couldn't beleive my ears, the most stubborn man in the world is finally on the same wave length as me. It's almost since he has done this that our son has been calmer too - maybe because his dad 'gets' why he is doing the crying etc. He too has noticed patterns with the crying and then being calm after. We have recently noticed lots of hand flapping too (which we had previously put down to him waving his arms about with his jumper hanging loose at the bottom). He has done it twice with no top on and it was so obvious you couldn't ignore it and now we have realised this is what he has been doing with his jumper! He did it at swimming the other day because I asked him to get dressed on his own (something which he has never done before) and because he couldn't put his clothes into the bag, he came to get me with his hands flapping like mad and he wouldn't talk to me at all - not sure if this is normal part of hand flapping to go mute but he didn't cry (maybe he went mute to stop the crying happening). He's so complex sometimes, bless him. His dad has also said that he will stop a conversation mid-flow and start asking about sums and sometimes asks about sums or tells us sums before going somewhere new - another coping mechanism he is trying maybe. I can't wait for the appointment to come through to be honest and get him some proper help rather than me and his dad making rather bad attempts at it. We've had the letter through to say he has been referred but I'm assuming there will be a long wait ahead!

Sorry I haven't responded sooner but you know how life takes over sometimes! Thank you everyone for taking the time to respond, it really is appreciated. Everyone is different I suppose but there is definately a link between him crying and then being okay afterwards. It is like he is a balloon which fills up with air over things he is thinking/worrying about, sensory overload etc and then it suddenly pops. If it is a big pop (i.e. major meltdown with proper sobbing for a few minutes) then he is completely fine afterwards, however, I have noticed if it is little releases of air (i.e. little cries for a few seconds which he tries to hold back) then the balloon doesn't empty completely and we tend to get more little meltdowns. Hope that makes sense! Oxgirl - In answer to your question about what happens when he cries, to be honest we have tried everything! Initially he was cuddled, spoken to softly and given affection, then we tried to help him by giving him breathing and counting techniques (or thinking of silly jokes), then we disciplined him by taking things away when he cried, then my husband started telling him to shut up and stop crying and sometimes shouted at him which made things worse and the last resort was ignoring him completely. None of these things have worked and even talking to him about his feelings hasn't worked. He can't explain feelings well at all to be honest - we did a feeling=reaction talk with him the other day with some paper and diagrams and got him to list all the things people feel (angry, sad, nervous, excited, happy etc) and then we got him to list what people's reaction to that emotion is (i.e. jumping around, crying, shouting, smiling) and he is okay with the obvious ones of happy, sad and angry but he could not work out the ones in between nervous, worried, excited. I think he has learnt angry to be honest as it isn't something he has ever been and is definately not natural to him (unlike his younger sister who totally 'gets' all the emotions and facial expressions of her and others, yet she is 4 years younger!). I am convinced more than ever that the crying is a release of the pressure/anxiety/worry that builds up. He had one massive meltdown last week and he has been fine all week and we've not had much sniffing from him either (his tic) - he just seems quite calm. However, we did have a very chewed jumper on Monday which I was really annoyed about. I don't shout at him about these things as I know he finds it hard to control it but I did tell him to chew a tea towell or something which is cheaper to replace than school jumpers! gggrrrr Thanks again everyone

Special_talent123 - I think he is okay at reading other people's faces now to be honest - I have used this type of thing before with him but thank you for the suggestion. darkshine - it's useful to know that you have gone the opposite way now and I take it you have found other ways of releasing the emotions other than crying and are aware when it is building up. Thank you. It's his own emotions and feelings that he cannot explain (although he isn't great at reading other people's either - but this doesn't cause huge problems atm). He cannot explain how he is feeling or know when the meltdown is on its way and therefore is unable to adopt a proper coping mechanism other than to cry about it. The crying is becoming more frequent but not for as long (if that makes sense) - he REALLY is trying to control it, bless him. It makes me so sad to see him struggle. The irony is, I could actually cry just thinking about him struggling

I will do, thank you.

And more importantly, what they do to release it before it gets to that stage would be really good. We've tried getting him to talk etc but he doesn't understand (or can't communicate) his feelings so this isn't working. Any tips for him to deal with things before they get this big would be really appreciated.

Thank you for your response. I hope I didn't offend with my post, I didn't mean it to come across as if you haven't got emotions, probably worded wrong, sorry - this is all new to me. I just don't think my son uses the 'crying' just for pain or unhappiness - he seems to use it as a release (or maybe I'm seeing it wrong). He cannot explain it but the only way I can describe it is like when you burst a blister that has built up - obviously I'm an outsider looking in so am constantly guessing/clutching at straws to try and find a way to understand the way he thinks and feels and wondered whether any other Aspies do this and feel better afterwards?

My son has been referred by his GP (to whom I am not sure but he agrees something isn't right!) but I have done the necessary and given them a detailed (10 page!) document about his symptoms and how it is now affect our life as a family aswell as him. He has therefore not yet been diagnosed with anything but I strongly suspect Aspergers (albeit mild compared to some). He cries about numerous things (as explained in previous posts) but we are finding random crying happening as if to release pressure or something and once he has had a good cry, he is completely fine in a situation which could normally make him cry! We just can't fathom him out or predict when he will have a meltdown! He was taken to football tonight by his grandad (to give him some space from his dad who doesn't 'get' the crying and shouts at him afterwards with frustration and I am working so feel helpless tbh). His grandad took him last week too and he was fine (well, a little cry during training because he didn't understand something but that is usual for him!). However, he got there tonight and before the training had even started, he was sobbing to his grandad (and dad on the phone). His dad reassured him over the phone and he then went off with the other lads to have a warm up kick about and was ok! We were talking between school and him being collected by his grandad to make sure he was okay and asking if he was worried about anything - he assured us all was okay! Obviously not but he doesn't recognise the build up of pressure maybe? It's so hard trying to get our heads around the way he thinks because he can't explain it himself and we haven't had a diagnosis or anything yet so may be looking at the wrong thing anyway but all the symptoms definately suggest it to me. Sorry, a very random message I know but I REALLY want to help him but I don't know how

Thank you very much. The points you raise have opened my eyes further to how he may be feeling at school (and other situations where he cannot comprehend the instructions given) and completely makes sense. It looks like I need to do a LOT more research on this in order to fully understand how to make everything happen quickly and properly. As you say, it is my duty as his mother to ensure I fight and provide for his needs and I will do my best to ensure I do this. With people like you around to help, it will be a lot easier so thank you very very much. The progress your son is making sounds amazing and it is no doubt due to you being completely dedicated to making his (and his family's) life a happier one - bloomin amazing that he's progressing like he is

That's fantastic news that you've got a diagnosis - just goes to show that your 'gut' instinct is sometimes right. You can finally start moving forward now. Best of luck