Was going to post another newbie plea for help with probable ASD but now heart broken for DD please help

[MelJLincs]

Found MN and this section a few weeks ago, got very excited to find real people with real advice. Dived in with a few random posts sorry if I annoyed anyone being a bit forum naive . Then calmed down, read all the advice, and old threads. Thank you so much already for all the adivce and experience that is on here. I still have a pile of questions thought that I am hoping those with experience will not mind helping with even if you have answered similar loads of times before.

Don't want to list all the issues/symptoms, am fairly sure DD2 9yrs is ASD or similar. Lots of sensory issues, rigid thinking need for routine time issues etc. etc. TBH we have really known that DD1 was a bit different for a very long time, but usual story, no-one else seemed to think so and we thought we were managing. Anyway for a variety of reasons things got a lot worse this time last year and we realised that we had been right all along, that it was more significant than we had realised and that we, nor she were in fact managing.

So off to GP - who was actually brilliant. Referred immediately to Paed, tried to talk to school (got rapidly less brilliant at this point). Had first appt. last Oct. got another Paed appt next week. Terrified I will not get accross what the problems are.

This is the main question had been meaning to post tonight (followed by a lot of other specific questions that I figure I better do one at a time on separate threads). DD appears to manage while at school but it all comes out in her behaviour out of school. I know she needs help but what do I ask for when I don't know specifically what she needs help with as she can't explain what she finds difficult? Can others whose DC is able to mask it at school please advise? Have you found this affects getting a dx?

Then tonight happened. All week has been very bad. Not unsurprising as I went away for a few days last week for a break with my DM and DS. Have never done this before. The stress for DD2 has shown this week. Sensory issues in particular much worse. Tonight she was having trouble sitting still to eat. Kept running about and shouting and squealing in DD1 (13yrs) face. DD1 tries very hard with her really but understandable snapped. DD1 then got upset, misunderstood a face DH made about something else and ran to her room howling that none of her family like her or love her. This follows the other day when we couldn't find any trainers that she liked, fitted or felt right on her feet, when she shouted and sobbed at me in the car park "why did I born her like this? with this body?" After a while I was able to go in the room and had the first ever conversation with her about how she feels. Basic as it was it has left me reeling. She demanded to know when we were going back to "that doctor". Told me she has problems, she wants them fixed. Asked why can't she find a friend that thinks like she does? Tells me she hates school and doesn't have any freinds in her class (her teacher tells me she has lots of lovely friends ) Asks me why can't she be home educated (I didn't know she knew there was such a thing)? I could go on, but you get the picture. This was a mammoth and unique outpouring for her and I have only just got her to sleep after. It has left me feeling so upset. I knew she was getting more aware and frustrated and angry but realised she is much more aware and miserable than I thought, but all the day-to-day issues stop her expressing it (she normally either only shows it in her behaviour, or makes one statment such as so-and-so did x today and then repeats is angrily for the rest of the evening but can't elaborate). Am really worried about how to help her, please give me advice if you have experienced this. I was totally unprepared to answer her questions and in a way she could take in. And so sorry, I hadn't meant for this to be so long but this has totally floored me and feel so guilty we didn't try to sort earlier in her life

Oh this is all so familiar!

My DD1 (12) hid it all until she started high school in Sept when it was all to much for her. She's had some CAMHS appointments this term and the things which have been going on in her head have blown me away. I feel like such a dreadful mother because I had no idea her experience in school was so awful.

Despite CAMHS and the ed psych realising how high her anxiety and how low her self esteem is school still insist on telling me that she is fine while she is there. She has a persona she uses at school and never lifts it to show her true feelings.

Don't automatically believe school about her friends. They don't necessarily look closely at what is going on - just at the well behaved compliant child who is polite to her peers.

I would see your GP and ask for a referral to your local CAMHS asap. It will still take a while. In the meantime try to find out if there's anything she thinks would make school easier then go and tell them what she is experiencing and what they need to do to help. Don't be fobbed off by the "she's fine her" routine. She's not and they need to help her.

I really feel for you because I have been reeling with shock in the same way several times over the last few months. Hopefully she'll feel a bit better having unloaded onto you and now you know you can do something to help.

Good luck. Be strong (and stroppy if necessary). I won't be around til Sunday now will look back for an update is there is one then.

Hi Mel I really sympathise and understand what you're going through. My DS is 10 and we are having the same problems at the mo although he is slightly different in that he has few friends but also hates school (actually said that he likes the learning but not the children). Had lots of problems at infants,seemed better for a while but now everything has kicked off again. Have seen paed and expected to get AS diagnosis but she said he is not presenting as she would have expected so we now have to wait around 5 months for A-DOS test. We did a list of all the things we were concerned about and gave that to paed so we didn't forget what we wanted to point out. He knows he is different from the other children and gets very angry & frustrated and is close to exclusion. We also feel guilty that we didn't get help sooner but are doing what we can now. I would talk to the Senco at school and ask how they can help as she is obviously coping at school and releasing her frustrations at home. HTH

Hi, dd1 (6) has Aspergers and manages quite well at school, like most girls with ASD she hides a lot of her traits (unless someone really upsets her then they start to show). Unlike at home school has a rigid routine, most days the routine is exactly the same (for example, writing in the morning followed by snack time and then maths), for a child on the spectrum this is what they thrive on, they know whats happening next and there are no surprises (unlike at home where routine can change). Also they manage to bottle up any upset and rage during the school day, they learn that it is not exceptable to let it out at school say they save it until they get home (and us poor mums have to cope with it).

I think this can be the difference between boys and girls on the spectrum, girls seem to learn where it is appropriate to express their anger/frustration and they will bottle it up but boys on the other hand tend to let it out (some people may disagree with me and i may be wrong). Although this is good for the staff at school and the way your dd comes across at school, it is not so great for you who has to deal with the frustration when she gets home.

We had many problems with dd1 with anxiety and frustration after school and it would get to bed time and dd1 would open up about why she was frustrated and we would have problems getting her to sleep. We now set aside a hour after dinner where she can talk to me about anything that is upsetting her and she can tell me about her school day, we talk through her problems and we think up stratagies of how she can cope with them.

I also find it helps if they can burn off some of the frustration when they get home, a trampoline is great for burning it off (if you have room for one).

Our experience with DS1 (nearly 9 and dyspraxic) has been very different but I will say that his anxiety and periods of 'everything in my life is awful' have almost stopped since his diagnosis last autumn. He told me that knowing he was dyspraxic 'explained myself to me' - I think he was really worried he was different and having a reason for it has helped. He uses it sometimes in school to explain why he is uncoordinated - it seems to help as the other kids know it isn't because he's stupid or not trying. Similarly we've just begun a private OT programme which he is very very keen to do.

He has a group of friends at school but complains that he is often called 'mad' even by them. He struggles, like your DD, to find friends who think in the same way as him (quirky, rambly, flights of fantasy etc). We've found that making friends out of school (through clubs etc) has helped a great deal - he is very good 1:1 but struggles with the pack mentality and hierarchy of boys in the playground.

There are some excellent books around on Aspergers, which I have 'cherry-picked' from (although his dx is dyspraxia he has some traits of AS). Tony Attwood has written a comprehensive guide to AS and there's also a good book written by a child, Kenneth Hall, called 'Aspergers, the Universe and Everything'. I bought these before DS1 was diagnosed and they've been very helpful even though he didn't end up with an AS dx.

Sphill- we suspect dd1 has dyspraxia, she is very much like your ds, she struggles with friendship, although she has lots of friends she has no real close friends as none of them want to discus dinosaurs or earthquakes with her , she gets left out in the playground because she can not run very fast due to low muscle tone, she gets upset because she doesn't get picked for games. We told dd1 a few months ago that she has Aspergers and low muscle tone, TBH the low muscle tone is proving to be more of a problem than the AS at the moment as she is noticing that she can't keep up with her friends. We are waiting to see OT as the school have only just agreed that she has problems keeping up.

I can also second the Tony Attwood books, we have the guide to AS and its been very helpful.

Thank you so much for all your replies all of them are so helpful! One of the things that I have found a bit of a shock reading through past and current posts on MN is that so many people with children adged 5, 6 etc. are describing what my DD2 was like then and are getting help - and we didn't! Lack of concern from schools and her size I think have not helped in a way. She looks 2-3 yrs younger than her age. 10 in July and wearing 6-7 or 7-8 clothes. So her age inappropriate behaviour has taken longer to look odd to others IYSWIM. However toddler type behavious in shops def. looks wrong now!

She does have one person that is a true friend who is a lifeline. They have grown up together as am BF with her mum. They do genuinely seem to like to be together but DD2 said last night she feels diff. even to her. This is the only person she ever sees outside school. Although she does not get left out of play from what I can gather, she is not really part of things either and hates and can't relate to the social interaction that her peers are now doing (they fall in/out lots of emotion etc. remember DD1 at this age) She never gets invited to any other child's house, or any parties anymore and this upsets her. I have tried inviting children here in the past - one didn't even bother to reply, and she never got invited back anywhere. If I ask now she doesn't even know who she would want to ask.

She does go to activities and while she does interact with other kids, it doesn't seem to lead to any friendships. We are finding that she can't cope in some of those types of environment either but are gradually finding some that are ok.

Marne we got a trampoline and she also goes to trampolining club now. You are right actually when doing her homework which is a major major nightmare, she will go and bounce every few minutes to let off steam. No good in winter tho. We have got covers off now!

The time to talk idea is good, but normally she finds this really hard to do. She will talk endlessly about subjects she likes but not anout herself. If I ask about school I normally get a long list of first we did this, then that, then had lunch etc. Even her diary that she writes every day is like this, no feeling whatsoever. She might just say x happened and she was angry. I cannot then get her to elaborate. That is why last night was so unusual, it just came pouring out. But was still a jumbled mass of statements, I was strugling to follow any of them up. This is why I am having so much trouble working out what to say to school. And worrying that if Paed asks school or her direct that they/she will just say it is all fine. Any tips on how to get her to communicate with me?

Thank you justabout that is a very kind and positive post. Tears in my eyes. You are right of course, believing in her and letting her know it is something I can do. I know I must also focus, not on what I haven't done, but what I can do now. Thank you

Al1son thank you for your post. Sorry you are going through so much too. DD2 is in yr 5 at mo, but high school seems just around the corner and am really worried how she will cope and determined that we get help in place B4 this (but worried we won't).

Pouffe When we went to GP, he said talk to school, don't wait for process it will be long (boy is he right). I have tried. Teacher this year is NQT. She has just seemed a bit bewildered TBH. I hoped she would have ideas, but she can't see prob. She coud see a bit of anxiety at beg. of year, but now thinks she is fine and it is all fixed - wish she could see her at home! Saw head when she was fist referred, he said he would tell SENCO and put her on special needs list. But nothing else has happened. As I am having trouble finding out what bothers her at school, and they can't see it, don't know what to ask for. Can I ask to see SENCO direct and are there general things that people think would be useful to ask for? Sorry that is prob. an impossible question as no child/school is the same.

Sphil, Marne thanks for book tips. Will look on amazon today. There are so many diff. titles out there, that is hard to know where to start, esp. as we do not have dx. Any more suggestions? Would you give DD2 anything to read (she loves reading esp factual books). I am worried about giving her the idea she has a specific thing when Paed may not agree? We aren't really sure ourselves, although know it is in this general area. But so many things overlap and there are a bewildering number of names for things out there. Have learnt some new ones just reading posts on here - like dyspraxia for example . But I also don't feel I can wait for dx know our area is overstretched and it has already been 10 months with just one 1hr appt that didn't get very far.

Mel there's no reason why you can't ask to see the Senco yourself but I would ask class teacher to attend meeting so she can be made aware of all the issues you are having with dd. Hopefully paed will be helpful next week. With AS the symptons often get more noticable as child gets older hence lots not getting DX until 10+. DS has started to get really anxious about all sorts of things and getting phobic about raw meat etc. Your DD sounds just like our DS as he also has few friends and rarely gets invited anywhere. The other kids can be so cruel too when all he wants is someone to play with

So hard to explain what a school day is like for us. I do a bit of 'autism auditing' in schools since I'm on the autism spectrum and have major sensory difficulties. I can't get all the way through a school day myself - it's too overwhelming and so I have to pace myself really carefully

It's SO loud to many of us, and all the social stuff is like being hit with an avalanche of eye contact and voices and jostling and laughing and that weird thing where people just ^know^ when it's their turn to speak (how?!?). Getting through it is like having to swim up the Amazon in shark infested waters every day - there's no chance to see who's a friend or who isn't because it's just one long survival course in there. All the social signals that say "I'm a friend" are totally invisible to me. Haven't a clue.

Then at the end of the day I'm so tired I could cry/scream/hide, which is I think what's happening with your dd if she's on the autism spectrum.

For me, having a quiet space to retreat to from time to time is absolutely vital, and a friend who can 'speak the language' and translate to me what others mean.

And we're usually rubbish at knowing how we feel or where the dangers are and how much we can cope with at any one time, too.

Just thoughts. Might not help....

Mel Please don't feel guilty. You sound like a very hardworking mum who HAS been doing things all along and tbh, (although I do have a habbit of being negative) just because you 'get' help doesn't mean it is any use. The most useful help you can give your child is to work hard to be in tune to them and listen and it really sounds as though you have done that.

Also, people here aren't really representative of real life and it isn't always that common really to get input at a young age, because quite apart from anything else children become more of a noticable 'problem' when they are older.

You have to also remember that 5 year olds getting help now, probably wouldn't have done 4 years ago when your dd was 5 iyswim. You really mustn't compare. It makes my heart break to know that in 10 years time the therapy that we are fighting so hard for for ds will be automatic and not such a bloody battle, but there you go.

You'll still feel guilty, of course you will. I'm an early (comparitively) help-seeker but even I am so annoyed with myself for the time wasted when I allowed myself to be fobbed off. But the truth is it is a David and Goliath situation. Why would you not trust people who are experts in children and PAID to identify and help those with difficulties to do anything else?

Please be kind to yourself.

Hi Mel,

Lots of really good advice here especially about Tony Attwood's book. I've been reading in over the past week and even picking bits out to share with DD1. It's helping her to have her difficulties explained.

When I realised that her school were not going to recognise her difficulties I was desperate. She is so good at covering things up at school that they genuinely thought I was the one with the problem. When I got desperate just before Christmas I phoned our local parent partnership and got the phone number for the educational psychologist. It was the best thing I ever did. She recognised straight away that DD1 was hiding her feelings in school and began to interpret for her. She sat in meetings repeating that DD1 may appear to be fine but isn't. She had 1 - 1 meetings with DD1 and then reported back on her behalf. The school suddenly got a lot more cooperative when she got involved. Things have gone downhill again since but that's because of funding and politics. The ed psych is still well and truly on DD1's side.

Schools do like to be the ones who call in the ed psych but you can go over their head if they are dragging their heels. I would definitely do it again.

AS Angrywasp said, don't feel guilty. You are a good mum. Just don't be too nice and allow anyone to fob you off. They may not be keen to put resources into a child who looks like she is fine. You're role is now to make a fuss on her behalf even if that means they do things just to get you off their backs.

I'm just about to compose an email to our school SENCO for her to find on the first day of term, tomorrow, detailing what they need to put in place in order for DD1 to get back into school this term. I will make it clear and direct but still polite as that appears to be what works.

Good luck

Hi all, thank you again for brilliant replies. Posting on here and all your really brilliant replies has given me the kick I needed to stop panicing, feeling guilty etc. and really focus on what we need to do to help DD2. When we got the real problems last year, it was the fact that we realised that the world was having an expectation of her that she couldn't meet and that she was getting more unhappy and angry that suddenly pushed us to do something.

Thinking back I realise that up to that point, we had accepted her how she is, other children had, and actually so had school. Her infant school seemed to just accept and work around quite a number of things without seeming to think it was a problem (e.g. refusing to write or read or say hello to replacement teacher when hers off sick for a term, or days when she could not sit on chair - they just let her seemed a bit bemused but not that we should worry - "she'll grow out of it" so we tried not to worry and waited) I am thinking now that another school might have pushed her to conform/made more of a fuss and we might have had problems earlier? The trouble now is, as time has gone on, everyone is expecting more and she realises it. So as she is now unhappy we have to help her. Since that moment last year (too long to go into it, but there was terrible incident at one of her out-of-school activities that was the last straw for her prompting the crisis)and the realisation of probably ASD or similar I have been trying to learn as much as possible to understand and help her. But I think I have got myself really hung up with feeling that needed dx before I could really do anything. From now on that stops. It doesn't matter exactly what it is, it is about understanding her as much as we can, helping her to understand herself and the world and then fighting for her wherever and whenever we need to - I have to stop feeling like I need a dx to empower me to do the best for my dc. After all this is all any parent does for any child isn't it - its just that I have been trying to speak french to her all this time, when she speaks german. So I have to learn german and then get on with parenting and I don't need to wait for a professional to teach me german or to interpret to anyone else for me. I have a brain and can and will learn! Does that make sense or am I rambling now? I know it will be tough and I will be back here for advice lots tho. Thank you all for helping me to refocus.

Amber also wanted to say thank you for taking time to give me some insight. Sensory issues are def. a big issue, as is trouble judging time, diff. making decisions, anxiety in leaving the house, difficulty adapting to change/unexpected things, very rigid requirements. All this is what has pointed to ASD to us (and our GP). All these were there before, but I didn't really "see" them. We had just adjusted to it all to the best of our ability without really thinking about it. They have def. got worse over last year - I think because she is more generally under pressure and stressed. And it has become harder for us to accommodate as it has got more extreme. I have struggled with finding it hard to understand her, communicate with her, to know what to expect from from her to deal with her demanding and angry behaviour. And then I realised that I feel this about one person, and this must be how she feels about everyone! So I can understand how exhausting and overwhelming this must be for her.

I couldn't have explained what she found diff. even in general terms a year ago, it has taken us a year of watching her and thinking about it, to start to get some insight. We had a go at having a chat yesterday - she wanted to which is a breakthough. She picked my bedroom which is often where she will retreat to hide or to bounce and roll on the bed (just realised, we do have an indoor trampoline! ). She was rolling and jiggling straight away and then got worried that she would miss a tv programme that she had bookmarked and couldn't stay. But I did manage to ask her about the jiggling etc. which she says make her feel good. She does this all the time at home, squeals, whoops, runs, jumps etc. - is this what gets called stimming? I also asked if she wants to do this at school but feels she can't there and stops herself? Reply was interesting. She said I can do it at school at playtime, I run about, and at home is like playtime. Her words and then she couldn't cope anymore. So I am guessing from this reply, that she has divided up the day into times and places where this is allowed, and where it isn't and then isn't even aware of suppressing it in the classroom? Am going to have to keep working with these snippets of info I think as a whole conversation is just too much for her. Will aim to make sure we have dedicated time to have a go every day though.

Am now going to spend rest of day working out a plan, and listing up what I want to say to Paed on Tues. (it is me only for this to take history).

Thanks again everyone for all the help this weekend

carry on with all that youare doing, but also google 'retained reflexes' and see if any of those soudnd familiar, then find a sensory trained OT who can give you exercises to help. friends son did these, and after about 6 months, stimming had greatly reduced, was also a lot less cross.

also have a look at treatingautism.co.uk website, lots of stuff about gluten free, casein free diet and other things that can help. (if your dd has any stomach/digestion issues - bad wind/constipation/diarrohea etc then gfcf diet really really worth a go.

Yup, the jiggling and bouncing can be a form of stimming. We tend to have an emotional/social age WAY younger than our actual age. I have to act as if I'm a 40+yr old woman in real life until I'm 'allowed' to be me, and the real me is about 8 yrs old in emotional/social terms. Just won't ever be any 'older'. That's such a difficult thing to explain to people, because I can write like a 40+yr old and then under pressure I have a complete silly small-child-not-coping patch.
Girls are often (but not always) very aware of criticism and very sensitive to it, so if we're told off for stimming in certain places, we can often learn not to do so...but it's horribly stressful. Like having to hold your breath for hours and only take tiny gasps when no-one's looking in case you're punished for breathing.

the stimmimg thing is interesting. my sis and I (prob both asd) were comparing notes recently. I reckon we have both shrunk our stims until almost invisible. We both need shoes that we can wiggle our toes in and we both have (diff) finger tapping. I tap my fingers from small to index in a loop over my thumb while counting to 4 in a loop, or flex my toes from a fist to normal.

Neither of these can be seen by others. i totally get the over loaded by people stuff and have to hide, not talk for a good while after a people heavy time.

unusually i reckon we have female line autism. my mum and her sis are fairly full on spectrummy and one of my dds (am still monitoring the other) is almost certainly on the spectrum.

Hi Amber. That actually makes a lot of sense, it is what I was kind of starting to see about DD, but not finding the right words. I have tried to explain to people that it seems like bits of her are growing up and other bits seem to be "stuck". I have looked up a few other threads you have written on and your insightful descriptions are very valuable. I will post some more specific posts on some of the things we are struggling with soon - please look out for them if you would and comment if you can as I am sure you will have lots more useful information . Not tonight tho, am too tired to word them properly!