# First step on road - toddler autism <update page 4>



## Twinminator

Well having thought my family would shrug off my concerns, that lauren is just "different" etc etc, (I only really see my MIL on a regular basis out of my entire family, who is a real "paper-over-cracks / smile-and-ignore" kind of woman, and DH is a workaholic and wouldn't notice if we weren't here, let alone if his daughter had any issues)
... spoke to MIL today and told her I wanted to take Lauren to GP to get her checked out for autism, and she said "Well, I wasn't going to say anything, but yes I think that's a good idea"! 

Ordinarily I'd be relieved but probably down to my pregnancy hormones, I'm annoyed...! Why didn't she say something earlier?

Anyway, just spoke at length to my HV (am still on their books for PND I had after twins born) who did the usual 'it could be this, it could be that' speech but said by all means go to GP "if it makes you feel better" :growlmad: and it just so happens that my doctor who normally has a 3wk waiting list because he's so nice has a cancellation this evening.

Hope to be posting something constructive this evening :thumbup: xxx


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## Twinminator

Well doc is taking me seriously at least. He knows me from old that I leave no stone unturned in my research before opening my gob, lol. 

He said the fact she has no words at all at 21 months is cause for real concern on its own, regardless of all else. He's kept my copy of the CHAT assessment i did on her and will send that off with his referral.
I have already set the ball rolling with MW re an ear test too, but I know that when it suits her, she'll listen. If I'm in the hall crinkling a biscuit packet, she's out of the lounge like a shot :winkwink:
I feel better that at least he is not shrugging me off as an over-protective worrywort. But at the same time the timing of this is horrendous, I don't feel at my tigress-best to fight what could be a long battle.


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## Newt

I am glad the doc took notice of you, as you can probably tell by posts on here the journey is a long one, I hope you can get all the support she needs. Only time will tell, and it is so frustrating not knowing :hugs:


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## Twinminator

Yes newt, I'm so glad I found this forum first and foremost, as it means I have psyched myself up for knockbacks, etc.
I am a primary school teacher by trade (full time mum for time-being though) and taught a handful of children with such conditions as aspergers etc but have never known much about the diagnosis stages, or indeed pre-school processes.
Thanks for the post. Are there any other good forums for special needs that you might know of? I love Baby & Bump, but it is designed for just that - babies... and bumps..! :thumbup: There are hundreds of women poised to reply to any queries you may have about gender scans or birthing options, but not so with this area of 'expertise'.


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## Abz1982

Hun, just saw this and dont really have any advise other than my EX didn't say a word till he was 6. He has an IQ of 148 and is now an engineer. He is 31 now, and so back then they just had him have speech therapy when he started nursery - nothing else. he ticks most of the boxes for Aspergers, and is a loverly man - if a tad annoying at times. 

It is good that you have got the ball rolling early so that you can make use of any resources that are avaliable.


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## Twinminator

Thanks abz, I do think that there is a bit of frustration where lauren's concerned, we always thought she'd be the first to talk, etc, because she seemed so focussed and precise about things, I could imagine her to be quite the analytical brainiac one day! Lol.


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## Twinminator

Doc's office rang me, to confirm an appointment with the paediatrician on 10th December. HV and NN doing a home visit on 14th December. :flower:


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## Newt

Sorry twinminator I dont know of anywhere else, been caling in here since ds was a bump and dont really visit anywhere else :s


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## Twinminator

Thanks anyway newt :flower: (and thanks for remembering :) xxx


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## Midnight_Fairy

Hope your ok. My son was having assesments since 2 and he finally got diagnosed in April this year he is now 6! . It was a long process. I hope you manage to get your familys support at a much needed time x


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## Twinminator

Cripes Midnight_Fairy :nope: :hugs:

What I really want to know is (and really is my only concern) is whether during all that wait, the autism is compounded by not being 'dealt with' early? Are the behaviours, and other related issues, harder to manage or 'undo' by 6yrs old?

I'll keep banging on about it for as long as it takes, but I'll be livid if at 6yrs old they diagnose her, give her support, only to be told she'd have responded soooo much better if she'd been diagnosed sooner!


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## velvetina

Hi hun,

Well done for being assertive and pro active, I know so many mums who found taking the first steps the hardest, because it is admitting to someone other than yourself that something is not right. My ds is now 14 but I will never forget those early days.

I know at the moment you are worried about the strength you feel you will need, and that you may have a long fight on your hands. A couple of things that looking back would have helped me were these.

- Be assertive, challenge and ask questions. Don't be frightened of making a nuisance of yourself if you are not happy with something. 
- Ask what the process is going to be, how long it will take.
- Ask what is going to be put in place to help your little one and you achieve the best.
- If you think something is not happening quickly enough, ask why not and what the reasons are, then judge if you think that is acceptable.

Contact the National Autistic Society, there is lots of info on there, and ask your hv for local support contacts, if you are lucky and have a good council, there may be lots of services you can access.

Please don't hesitate if there is anything else I can help you with. I would like to say (I have said it before) but I wished when my son was a toddler I could have seen him ten years ahead. If I had, I don't believe I would have gone to such a dark place as I was in at the beginning. 

All easy to say but so much harder to do, but you can and will suceed.:hugs: x:hugs:


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## velvetina

Saw your last post (as I was typing). Early intervention can make a massive difference, I belonged to a mainly US board specifically for ASD and the mums on there were so experienced on early intervention, floor time and diet intervention. You could take as far as you had the time and effort for. 

Some books you may want to take a look at is Stanley Spanwick, he is an American guy leader in the field of EI and floortime. I will see if I can find the board for you, I hadn't been on for ages and lost all my favs when my hard drive went. Will pm it to you if I find it. x


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## Twinminator

Thanks velvetina, you're a star :flower: I'll google/amazon the book xxx


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## livin

I've always found https://www.asd-forum.org.uk/forum/ helpful


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## Twinminator

Many thanks livin :thumbup: xx


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## Midnight_Fairy

Hi just wondering how you are getting on.

I remember when my son started school one of the teachers took me aside and asked me WHY my son was having tests as she thought he didnt have ASD or anything. I was horrified. She was a teacher not a medical professional. I stod my guns though! Shame on her!
I just want to say you may have ups and downs in this process but never give up xxx


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## Midnight_Fairy

Twinminator said:


> Cripes Midnight_Fairy :nope: :hugs:
> 
> What I really want to know is (and really is my only concern) is whether during all that wait, the autism is compounded by not being 'dealt with' early? Are the behaviours, and other related issues, harder to manage or 'undo' by 6yrs old?
> 
> I'll keep banging on about it for as long as it takes, but I'll be livid if at 6yrs old they diagnose her, give her support, only to be told she'd have responded soooo much better if she'd been diagnosed sooner!

Yeah its bad. I dont know why it took so long. I live in a rural area and the waiting list for CAMHS was huge.

I was lucky in the way that I as a mother knew he had ASD for certain by the time he was 3 so I had taken it upon myself to change his diet, make visual cards etc so I feel I helped in that way. I also never stopped nagging at the school with anything I thought could help. You dont need a diagnosis for alot of things, in all honesty, the diagnosis didnt change much in the way of learning support. xx


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## Twinminator

Hi hunny, thanks for asking, I've had an eventful week really, we went to stay with my very best friend and her family (they live 3hrs away, in the city I used to live in, and we've been doing 3/4 day visits there every month - 6weeks since the twins were born)
and even since our last visit, everyone could see a marked "worsening" in Lauren's manageability. I think because Emily has learned some words, some instructions, some social niceties etc, and Lauren has gotten bigger but no more aware, plus with her dogged determination to climb at any cost, well, it's just hard not to compare them.

The first day and night, she was a nightmare, wouldn't sleep, didn't like the extra fuss and noise from my friend's children, I just wanted to come home again. BUT by the end of the week, I didn't want to leave, as although she was still a bit wary, it was clear she was taking in what was going on and adjusting to the changes of being away from home. When we got home she was pleased to be surrounded by familiar things and got straight to her things without fuss or upset, and I could've sworn I heard her say "uh-oh" but i can't be sure it was her, as Emily says it all the time, but I'm hanging onto the belief she may well have said her first word :cry:
So a very draining week with all the travelling on my own, the upsets, lost sleep, etc etc, but maybe it was the best thing for her right now :) xxxx

Thanks again for asking, hope all is well with you too...??? xxxx


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## Midnight_Fairy

Twinminator said:


> Hi hunny, thanks for asking, I've had an eventful week really, we went to stay with my very best friend and her family (they live 3hrs away, in the city I used to live in, and we've been doing 3/4 day visits there every month - 6weeks since the twins were born)
> and even since our last visit, everyone could see a marked "worsening" in Lauren's manageability. I think because Emily has learned some words, some instructions, some social niceties etc, and Lauren has gotten bigger but no more aware, plus with her dogged determination to climb at any cost, well, it's just hard not to compare them.
> 
> The first day and night, she was a nightmare, wouldn't sleep, didn't like the extra fuss and noise from my friend's children, I just wanted to come home again. BUT by the end of the week, I didn't want to leave, as although she was still a bit wary, it was clear she was taking in what was going on and adjusting to the changes of being away from home. When we got home she was pleased to be surrounded by familiar things and got straight to her things without fuss or upset, and I could've sworn I heard her say "uh-oh" but i can't be sure it was her, as Emily says it all the time, but I'm hanging onto the belief she may well have said her first word :cry:
> So a very draining week with all the travelling on my own, the upsets, lost sleep, etc etc, but maybe it was the best thing for her right now :) xxxx
> 
> Thanks again for asking, hope all is well with you too...??? xxxx

Oh well I can imagine that all in my head so clearly lol. I travelled up to Birmingham last year with my 2 and it was hard work so hats off to you and I am glad that by the end you were enjoying the week. All is ok here. I have noticed M's behaviour getting strange again. I wouldnt say "naughty" but he has been very highly strung the last few weeks, I dont know if its because of christmas? x


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## Twinminator

Could be christmas, could be a tad under the weather...? Lolly was unbearably agitated/aggressive/itchy-footed when she was under the weather a few weeks back. (thank goodness her sister just hugs her teddy and lounges on the sofa in the same condition!!!! :winkwink: ) xxx


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## Midnight_Fairy

Twinminator said:


> Could be christmas, could be a tad under the weather...? Lolly was unbearably agitated/aggressive/itchy-footed when she was under the weather a few weeks back. (thank goodness her sister just hugs her teddy and lounges on the sofa in the same condition!!!! :winkwink: ) xxx

Oh I totally know what you mean. My other daughter is so laid back bless her. She is used to him LOL x


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## stresshead

hi im fairly new to this site and popped over from another forum to have a nose.I have a 7yr old daughter who was diagnosed with high functioning autism a year ago.I started asking for help when she was 2 as i started noticing her development was a lot slower than her younger sisters.Her 1yr old sister was talking yet tanisha at 2 wasnt,also she would rarely interact with other kids and didnt seem in control of her own emotions.I spoke to my health visitor(actually i spoke to several) and wwas told she was fine as she could sing word perfect.When she started playschool she had i.e.p's and every 6 weeks would have meetings with senco.Also the playschool got the ball rolling with speech therapy.Then when she started primary it all stopped apart from the i.e.p's,i was so confused.It was only when i spoke to her year 2 teacher that we both agreed that she needed to be referred to our local cdc centre where after 2 assessments and a class obs we got her diagnosis.My only struggle so far is finding mums with girls on the spectrum,everyone i know has boys.To be honest i would recommend exactly what every-one else has regarding sites to go on.With regards to managing day to day(especially if you have other kids) routine will be your best friend along with as much pre-warning as poss.I used to sit down with tanisha and tell her in as much detail as poss what was going to happen thru out the day as surprises were a no-no and this was all before we got her dg.If you dd finds it easier you can use picture cards to explain,you could maybe ask your h/v if she can get hold of any.I know its hard and can make you feel isolated,frustrated,angry etc but your not alone,i found sites like this fantastic as every-one knows what you are going thru.xx


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## Twinminator

Thanks stresshead, that's really helpful. Lauren's had a really good weekend and it made me think I'm imagining everything, but while we were away, she struggled with the routine changes and is obviously more comfortable at home where everything's familiar, nap time is regular and in her own cot, etc etc etc. I didn't think much of it and I didn't even really notice myself doing it, but I have to say "bumbum" and "nappy" to her several times now before I take her out of the room to change her nappy, because if she's just whisked off, no matter how playfully or lovingly, she goes mad.

When I go to see the paediatrician with her in a few weeks time, I want to be able to take a list of her recent behaviours/events to cover in as little time as possible all the things she may not have time to exhibit during the assessment. But it's hard because sometimes as a mother you take things for granted (as well as seeing things others don't see on the flipside of that).
So thanks again, it's useful to read others' experiences as it triggers my brain to remember what to put in my list! xxx


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## Midnight_Fairy

Glad you had a good weekend x


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## stresshead

hi again just wanted to reply about your list you want to make.You could include things to do with eating i.e. certain textures she wont tolerate,clothing i.e is she fussy about trousers touching her hips(my dd is) or certain fabrics,routine changes,does she have obsessions with certain toys i.e stacking blocks over and over or lining things up(stickers was my dd's thing),loud noises,busy crowds.I know its a lot to think about but any-thing you know she reacts differently to compared to her sister write down.Dont ever be afraid to be pushy or really firm,you know your daughter best.xx


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## Twinminator

stresshead said:


> hi again just wanted to reply about your list you want to make.You could include things to do with eating i.e. certain textures she wont tolerate,clothing i.e is she fussy about trousers touching her hips(my dd is) or certain fabrics,routine changes,does she have obsessions with certain toys i.e stacking blocks over and over or lining things up(stickers was my dd's thing),loud noises,busy crowds.I know its a lot to think about but any-thing you know she reacts differently to compared to her sister write down.Dont ever be afraid to be pushy or really firm,you know your daughter best.xx

Thank you hun xxxx
(I can think of something for each and every one of those categories by the way!!! :winkwink: )


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## Midnight_Fairy

stresshead said:


> hi again just wanted to reply about your list you want to make.You could include things to do with eating i.e. certain textures she wont tolerate,clothing i.e is she fussy about trousers touching her hips(my dd is) or certain fabrics,routine changes,does she have obsessions with certain toys i.e stacking blocks over and over or lining things up(stickers was my dd's thing),loud noises,busy crowds.I know its a lot to think about but any-thing you know she reacts differently to compared to her sister write down.Dont ever be afraid to be pushy or really firm,you know your daughter best.xx



I agree :) good luck xx


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## Eoz

hey hunny how are you doing and your little one xxxxxx


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## Twinminator

Hi Eoz, she's actually doing really good :) She's started saying mamamamamama, which started from her pursed-lipped whining, then she opened her mouth so it'd carry more volume lol and realised she said Ma, and now there's no stopping her! 

My doc specifically asked (when i said she had no words at all) whether she even babbled mama or dada, and I said no, which is what prompted him to worry more than when i described her behaviours.... now she's going to make a liar of me at the paediatrician appointment... :dohh: Oh well, it's a nice way to be made a liar of I suppose :)

I had painful braxton hicks last night and then i had vivid nightmare about waters breaking and losing plug at the stage i'm at now (25wks) but hospital turned me away saying they were too busy to look at me!!!!!!!


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## Twinminator

Got paediatrician appointment on Friday but really don't have the energy for this right now :nope:

DH had a lot of health issues the past few months, he's been very depressed with it, had given up smoking since leaving hospital early Oct then announced to me last night that after two months smoke-free, he's just started up again, which he really can't afford to do on many levels. :nope: :nope:

I've been carrying on, 6 months pregnant, with my twins, virtually snowed in (can waddle to corner shop but 12 days not been able to get out in car/with the girls now, and fresh bloody snowfall overnight, just great) and DH like a zombie in the corner, but I've thought it'll be worth it when everyone's health things are sorted out, and have been keeping as upbeat as possible and making life as comfortable as possible for everyone.

Now I just feel totally deflated, like I'm fighting a losing battle with everyone. I'll probably not get to the appointment on Friday anyway if we don't get a thaw pretty bloody quick and I'm just struggling to see why I bother at the moment :cry:

*UPDATE*: Head paediatrician spent hour and a half with Lolly, and says " without a shadow of a doubt" she is autistic and to "expect a long term relationship" with her and her team. Will post rest later. Bit shocked


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## Newt

:hugs: oh hun, it sounds like everything is on your shoulders at the moment, no wonder youre feeling deflated. it may not sound like it but having a professional saying that se is definatly autistic is a good thing, she should get all the suport she needs rom now on and the earlier the intervention the better. We are still waiting for someone to say that to us and being in limbo is so much harder. 
I hope your dh picks up a bit soon, you need him strong :hug:


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## Twinminator

Thanks for your words hunny, knowing there are others out there going through similar thing is really really really helpful, I cant tell you how much. Have got over the shock a little bit, but right now it's not the autism itself that's playing on my mind but the particular behaviours that are manifesting in her because of it, that are unique to her - namely her dangerous obsession with climbing combined with an ingenuity for improvisation (i.e. clever ways to get to where she wants to get) and her seemingly superhuman strength.
I keep finding her on window sills for instance, how the hell she manages it is beyond me (paediatrician said she'd never seen a girl her age so strong) and isn't such a problem in winter but she did it at my friends house, upstairs when supposed to be napping. Still can't figure out how she got out of the travel cot other than just hauling herself using her upper body weight.
I had been hoping and praying all this was a phase and by the time the baby was born, she may have grown out of it, but the paed petrified me talking about funding to have special pushchairs made for later on if I still can't control her... :nope: 
I just don't know how I will cope with her physically in this particular scenario if she can't learn it's dangerous.

Sorry to run on, I just wish I had a crystal ball that would tell me she'll definitely not need that level of intervention. But she's such a big and strong willed child, I'm feeling a bit hopeless at the moment.
Thanks for you message of support, I really appreciate it :hugs: xxx


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## Newt

I know, what you mean, I am terrified that my lo will go off with someone, he has no fear of strangers and will go to them if he thinks he can use them as a 'tool' to get what he wants. You will cope though hun, you find a way, its not impossible to get through to autistic children, its just a different route. 
thw, if you ever find that cristal ball, can I have a lend? lol x


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## Twinminator

LOL no problem! :thumbup: xxx


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## Midnight_Fairy

Newt said:


> I know, what you mean, I am terrified that my lo will go off with someone, he has no fear of strangers and will go to them if he thinks he can use them as a 'tool' to get what he wants. You will cope though hun, you find a way, its not impossible to get through to autistic children, its just a different route.
> thw, if you ever find that cristal ball, can I have a lend? lol x

I feel the same. Its emotionaly draining tbh, keeping an eye on them all the time. Hugs all of you x


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## Twinminator

Hugs right back at y'all! :hugs: :thumbup: xxx


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## Twinminator

I'm keeping this short and sweet purposefully, I'm angry and upset and possibly hormonal, although I think I'm justified in my frustration :cry:

Health visitors came yesterday for a home visit, spent an hour 'playing' with lauren alone, it was all her own agenda, did some of the tasks they wanted her to do but generally was in her own world. And silent throughout. As I expected. They're putting tickscore into their computer system and coming back to follow up on new years eve. Fine.
Today was her hearing test at the clinic. I'd wondered how they were going to do it and was dismayed that it was simply making noises behind her, I knew she'd fail, and she did. If she wasn't trying to get on their furniture, she was engrossed in a particular toy, and would not turn round for the sounds. To prove my point that she CAN hear, I crinkled a pack of mini cheddars behind her and she turned. But they said they couldn't pass her, she had to respond to the things on their tick list (bloody tick lists!!) so now she's got to have the ABR hearing test at the hospital under sedation. Fine.
I texted my best friend to fill her in, and added at the end "I can't help thinking that this is all a far cry from the kind of pursuits I imagined sharing with my daughter growing up :( " and after a while I got a reply back saying "Big hugs. But I didn't want for my daughter to have excema and wear glasses, but shit gets thrown at you sometimes."

Now forgive me if I'm wrong / over-sensitive / selfish, but I'm so cross, disappointed and saddened that she is comparing such issues, she knows me and my girls really well, we're godparents to each others' children, etc etc. Oh I don't know. I'm better off in a cave, I don't see the world in the same way, I don't like what I see a lot of the time. Is it my hormones?? Am I expecting too much by way of support, nobody seems all that bothered.


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## Midnight_Fairy

I think her response was very insensitive! What a stupid comparison. (IMO) I hate to say it but some people just wont ever understand xxx


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## Twinminator

It's so hard at the moment to gauge how I'm meant to feel/ react/ behave, when I feel I ought to be taking pregnancy hormones into account. Having had PND after the twins too, I always feel like I've got to be almost apologetic for getting upset about things, or logically talk myself out of anger, because "it's all in my head" but I'm starting to think I sell myself short and I should NOT feel guilty for being cross and upset for once. 

Sorry, I think I'm just trying to convince myself...!!! :blush: xx


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## Midnight_Fairy

Hugs xxxxxxx


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## NotHelped

Autism isn't the end of the world :)

My boyfriend was diagnosed very young, and his mum decided she'd let him learn and deal with this on his own. He's now 17 and is fine, has a good job as a mechanic, and, apart from being slightly annoying and acting very childish sometimes, he's fine :)

xx


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## Twinminator

NotHelped said:


> *Autism isn't the end of the world* :)
> 
> My boyfriend was diagnosed very young, and his mum decided she'd let him learn and deal with this on his own. He's now 17 and is fine, has a good job as a mechanic, and, apart from being slightly annoying and acting very childish sometimes, he's fine :)
> 
> xx

You're absolutely right, it's not :thumbup: But like any cover-all, 'umbrella' name for a condition, there are so many different levels, severities, and behaviours that manifest themselves _because_ of the condition... 
and it's more the thought of her current behaviours/fixations taking a long time to grow out of that worries me, as they are getting more and more dangerous (as well as socially inappropriate) the bigger, stronger and older she gets. 

Her journey to social competence may be rocky, it may be smoother than we expect, God willing, but it's a journey I wish she didn't have to make - I've got to pack the bags for any eventuality, and it doesn't make the setting off any less daunting.


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## Newt

It's true that it isnt the end of the world, but it is still upsetting and worrying at times. TBH i think your 'friend' is shallow and insensitive and not a very good friend. A good friend would just shut up and listen, allowing you to vent and should expect the same in return. and although there are always people that are worse off you can help feeling what effects you right now. The key is to put the future out of your mind and enjoy your LO for who she is now. Oscar has his faults and i worry for him, but he is the most loving, funny, querky, sweet little boy and I love every minute with him. :cloud9:


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## Twinminator

Thanks. I was only saying to someone today about perspective, like one person may think e.g. going from super-rich to bankrupt is the end of the world, but then their neighbour with terminal cancer would give anything for that to be their only concern. But they're two separate issues, suffered by two separate people, so they're both within their rights to be miserable about their lot xx


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## Ratty

I don't think she was comparing her situation to yours. I think the point she was making is that bad things happen to all of us and we just have to deal with them the best we can.


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## Twinminator

Thanks Ratty, I'd figured that. Hence why I agreed with her that it's not the end of the world. And just as soon as the shock of that, my DH's recent hospitalisation for high BP which three different meds have failed to touch, imminent new baby, and money/space/practicality issues all settle down, I will indeed deal with it all the best I can. She and her siblings will want for nothing emotionally, I will make damn sure of that.


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