crohn Sometimes I feel ridiculous thinking maybe I belong here and other times it seems to fit so bloody perfectly. I would however never say anything like 'I'm a bit autistic'. On here I'm cautiously wondering that maybe I fit in somewhere and 'in real life' I'm just carrying on being the weirdo I am, till I'm a little more certain either way.

I hope that's an okay attitude to have? I'm not really sure, maybe it's not.

PolterGoose · 16/09/2015 21:29

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PolterGoose · 16/09/2015 21:30

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rivierliedje · 16/09/2015 21:40

Thanks polter.
congratulations (?) on getting your assesment.

iamaboveandBeyond · 17/09/2015 07:29

Just marking my place. Date of my assessment is getting closer and closer and i'm terrified :( what happens if she says i dont meet criteria for asd? Do they give up or try to find something else?

iamaboveandBeyond · 17/09/2015 07:37

I mean, surely its positive that...
1- my ot referred me to cmht herself in the first place, rather than just telling me to see my gp
2- the cmht nurse referred me to the psyc and
3- that the psyc did an initial assessment and thought i had enough traits to warrant asd testing

But them having to see my mum, as well as the testing in general, is making me nervous. What if my mum goes in and says all the 'wrong' answers? Shes not the best at paying attention to actual me (as opposed to her thoughts of me, iyswim?) and as long as i can remember i havent told her (or really anyone apart from dh) how i feel

How will it look if i say i struggled with something as a child and she says the opposite? I dont know if its just the potential asd or to do with the trouble i have had for years with my physical health, but i am terrified that i will end up looking like a liar :(

ALittleFaith · 17/09/2015 09:59

iam, it's understandable you're nervous. Re your Mum - it won't be so much about what she thinks as what she says. The assessor will be good at gleaning information hidden within what is said.

13 months on from requesting an assessment, still no news for me.

LeChien · 17/09/2015 10:12

"Ahem, Chien, are you not a chicken obsessive? "

Erm, yes , but my chickens make beautiful noises, my cockerel's crow is deep, mellow and a joy to listen to. This cockerel is screechy, irritating and bored so crows constantly.

Crohn, interesting to hear your view of the non-official assessment. I found it incredibly helpful, but still feel that, as it's not official, I am a bit of a fraud. My dr has referred me for official assessment, as the non-official assessment isn't enough to help get appropriate support for mh problems (which I think would go away if I became a hermit!), and because I'm not a cryer they don't think I'm feeling as bad as I do because I'm not breaking down in front of them in a puddle of tears.
I actually think that I do have meltdowns, but they are rare, and take the form of crying, lots of crying! sometimes for hours. Most of the time I avoid situations and people who make me feel uncomfortable, and I hate being told what to do. It wouldn't surprise me if there was a degree of demand avoidance, but without the violence that we see in ds.

Polter, your support when we were going through it all with ds was amazing, I'll never forget it
Parents who have dc with ASD can spot it in ds, and I find that I'm spotting "differences" in some dc that others don't see, but I suppose we spend so much time with our dc that you can't help recognising certain traits and mannerisms.

Beyond, I understand that, my mother would be the same. She's amazing at glossing over anything negative, and if I mention anything that I did as a child that was odd, she can't remember at all.
Does she have to go, or do you have a sibling or someone else who could go instead?

When mine comes up I'm planning on filling in questionnaires with my twin and taking dh with me so he can drive I would rather go it alone though without bothering anyone.

HugAndRoll · 17/09/2015 18:36

For the parents on this thread, how do you cope with it? I have two children, one with ASD, one with probable PDA; you'd think I would be more understanding of them (people say I am) but I can't cope with things not going the way they should. That means, whenever there's a demand avoidance, they don't do as they're told, or are generally loud children, I really struggle to cope.

What strategies do people have in place? I shout a lot more than I would like to, but don't know how to deal with my emotions.

PolterGoose · 17/09/2015 19:04

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LeChien · 17/09/2015 20:21

Hug, I have 4 and I'm not coping well at all at the moment.
We try to have routines, but then it goes to pot when ds1 comes home in a strop, or one of them needs to go to the drs.
Ds2 makes high pitched noises when he comes home from school and we've found that he needs to get on with it in order to calm down. Ds3 has some sensory stuff going on and hates noise, so ends up screaming and fighting back, even with ear defenders on.
The best we can do is split them up when dh comes home from work.
I was very shouty, but I've made a massive effort not to and it has helped, and my older dc feel safer because I'm not losing the plot.
Another thing that I find helps, and it will sound awful, but I pretend I'm being filmed, and it mostly helps me to stay calmer.

Until ds2 was 6 it was relatively easy and peaceful, and I was in control and everything was fine, then behavioural issues kicked off and it's gone downhill ever since, and I have teenagers who have their own minds and want to go out spontaneously and do things that I don't know about.
My long term plan is to build a time machine, go back 16 years and tell myself to forget children and stick with dogs :o
(Mostly joking, I love them all, and would happily spend time with them and no-one else)

onlyoneboot · 17/09/2015 21:29

Hug I've wondering just that today, how do other people cope. I have 2 diagnosed DDs and DS is on his way to assessment. Meeting their needs is all consuming and now that I'm homeschooling my DDs, I have no time to myself at all. I'm really struggling with that. We're online schooling and if I could get a structure in place I'd build in time for myself but DD1 is so anxious and resisting getting started. I just hope it works out. I don't shout anymore. I try to use a lot of humour. Writing that down has been helpful, not had a great day.

onlyoneboot · 17/09/2015 21:32

yy to a time machine LeChien I'm quite sure it was meant to be just me and a cottage full of cats

PolterGoose · 17/09/2015 21:34

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BertieBotts · 17/09/2015 21:42

I am not doing very well with parenting at the moment as my earlier post shows

I have been thinking about the particular challenges as I was thinking about writing a blog post about it, but the difficulties for me (with suspected ADHD, so not the same as ASD but some overlap) are sensory overload (in hindsight, I should have just got a playpen and used it and not worried about him being upset at being left for a short time.), not following through on things just because I forget, not having much motivation/gumption to get up and go out and DO things, and then the impulsivity, I often act before thinking and as a result DH often describes my actions as being sibling-like rather than parental. I can't keep a straight face when they do something funny but naughty. Just doesn't happen. Which of course, is taken as approval. But I'm also prone to lashing out - I don't say hurtful things, that's just not in my nature, but I do shout and I have hit and pushed. Not intentionally :( The thing which consistently helps is removing myself from the situation when I can feel myself start to get annoyed. A book called When Your Kids Push Your Buttons is helpful, too, though I need to re-read it I think.

I can't do the pretending I am being filmed thing because I just know that I am not. I seem to lack that kind of imagination :o It's definitely a good idea, though!

Putting accountability somewhere other than on people is good so having tangible things - like we have an app with jobs that need doing on it so DS can choose which ones he wants to do each day and we're doing screen time allocated with tickets.

BertieBotts · 17/09/2015 21:45

I would like a time machine so I can tell myself to go back and bloody enjoy life a bit before having DC I was a young parent (which is more common in ADHD girls apparently) and I find it really, really hard to juggle all of the normal growing up and working out who I am and how to manage my ADD and there is a small person (who is not undemanding in himself) making demands on me. He has a really skewed idea of adulthood. He says being a grown up is basically like being a kid except you have to go to work and make people's lunch.

Yep, that's exactly what it is. :o

BertieBotts · 17/09/2015 21:45

(I am useless at the making lunch part. I get into hyperfocus and it's 3pm and he's complaining that he is starving...)

onlyoneboot · 17/09/2015 21:56

While we've got the time machine, I'd also like to nip into the future to see that my dc are alright in a few years then I could come back and do this hard teen part knowing there was definite light at the end of the tunnel.

BertieBotts · 17/09/2015 21:59

One thing that I really struggle with, child-behaviour wise is when I can't make him do something (or stop doing something) that I really really need him to do. When I run out of persuasion options, even the ones I don't want to use and I literally have no ideas then I just panic and tend to feel totally defeated and useless and I usually run off and cry

I remember one walk when he was about four when he just would not stop poking me, because he thought it was hilarious. I had asked nicely, asked firmly, held his hand, (which didn't prevent it) explained that it was hurting me, threatened the loss of something when we got home, shouted, increased the threat, then screamed at the literal top of my voice (was becoming desperate), cried and eventually pushed him over on the pavement. I was horrible, I know I was, but I can also recall the total despair that I felt at not being able to make him stop. I still don't know how I should have handled it. I don't know whether it illustrates that he was an unusually persistent child or that I am a horribly incapable and intolerant parent. At least he has DH

CrohnicallyAspie · 18/09/2015 06:41

Yes bertie I struggle with that too. It's the feeling of loss of control. And usually related to something sensory, either she will keep making a noise that grates on me, or insists on being joined to my hip when I really need a bit of space. If it's safe to, I try and leave her alone and go and slam some doors or put my headphones on or something. But if I can't leave her for whatever reason I have to admit to screaming and smacking her bum on a couple of occasions when I have lost it.

PolterGoose · 18/09/2015 07:24

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BertieBotts · 18/09/2015 08:10

Oh yes, I found out about the consequences thing so we have a system for that now :)

I like the idea of saying something is funny but still not okay.

He doesn't tend to do the poking thing any more, because he's grown out of it, but the problem is for anything where the solution is waiting it out that holding his hands isn't usually enough and the only way to get him bored is to get him into a position where he literally can't move, which for me (because I'm small and not that fit!) is sitting on him on the floor! I don't feel like I can do that when we are in the street. DH did find a position for "time out" (which he does but I don't often bother with because I can't get him to stay somewhere) which is not forced or painful but he still can't get out of easily. But otherwise he will escalate unendingly. It takes a huge amount of strength not to react and escalate things myself. Time out where he has to stare at a blank wall (dear God, we sound Victorian) is the best thing. I think he gets himself overstimulated and wound up and then it's not that he won't give up but that he can't.

PolterGoose · 18/09/2015 09:44

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Straycatblue · 18/09/2015 22:56

CrohnicallyAspie
For the 'you look normal/you don't look like you have Asperger's' type comments, try saying 'well you don't look ignorant!'

Haha thank you Crohnically!

Polter congratulations on your assessment results, when I first got mine i felt relief and exhilarated that there was a reason why my life had gone in certain ways.
Now Im not sure how I feel about it. :/

Can't remember who said it earlier (I wish there was a quote function on here) i too copy accents/voices and have to be very aware and stop myself doing it as im sure people probably find it either annoying or weird.

Has anyone changed career since their diagnosis? I have come to the realisation that i am unlikely to adapt any better than i have and I wont suddenly find my demanding and stressful job easier so i need to try and make lifestyle changes to reduce stress in my life to minimise meltdowns.

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