late AS dx - dealing with the shock

[phoenixagain]

I recently posted on here about forgiving my 11 year old DD for her ASD behaviours and found some brilliant advice and support. So I am taking the plunge again asking about the shock of a late diagnosis of AS.

I may be in the wrong place, but the tumbleweed is still blowing across the empty plains of the SN teens section. (Why does no-one post there?)

Its the second day of half-term and already I cannot cope. I just can't stop crying today.

My DD's ASD has become more and more apparent in the last 2 years and we got dx in the summer.

Today she is like a pre-schooler and wants to do messy play. She is making a mess with paint and plasticine, whilst chanting nonsense words to herself. When she gets to the end of this session she will throw herself around the house and hurt my younger DD for something to do. I will be left with the mess, but I let her do it because she is enjoying it.

She has no social life and is only happy when left to play computer games for hours. This goes against everything I ever believed about bringing up children - but it is the only way to get any calm into the house.

It seems like everyday I am shocked by her problems and lack of maturity. I used to receive compliments on how well behaved she was and the primary school teachers were always enthusing over the quality of her schoolwork (G&T for literacy). I thought she was a bit eccentric but over time it has killed me to watch her become totally rejected by her peers. I feel I have been judged and found wanting too as I am the weird girl's mother and must condone her scruffy appearance/strange interests mustn't I?

I can't get over the shock of who I thought was my DD for ten years and who she actually is.

Her behaviour is just getting worse and worse and I am so shocked that she cannot even manage the most basic of hygiene skills (shocking finds in the laundry bin). She used to be able to keep herself clean. What happened? How will she cope when she starts her periods?

I know the SN boards on here are brilliant for practical advice - battling through the systems that we find ourselves in. I hope I can be forgiven an emotional outpouring amongst such practical people as the mums on here.

At night she reads her baby books and Topsy and Tim and I am shocked. This was the time I expected things to get easier as she was growing up and at secondary school. I never expected this level of regression.

I am so jealous of the posts I read on here where people find out their child has an ASD whilst they are at nursery. The shock of not knowing this was coming is more than I can cope with today. I never knew it would get that I can't leave my DCs alone for ONE SECOND unsupervised.

Sorry for the long post. I just need to type this before I explode.

Hi pheonix,

Have nothing useful to add really, but wanted you to know I had read your post. You'll find your own way through the labyrinth and discover a way to make things better as you gain more knowledge and acceptance.

Sorry you're having a rough time.

pheonix I know you don't know this, but there is a regular poster here who has currently namechanged but was called phonenix. When I see 'pheonix again', I get a bit confused.

It's a bit cheeky to ask, but would you consider changing your name to 'peonyagain' or something so that it is easier to distinguish?

If you don't want to that's fine, it is just that others might be having the same problems as me.

You need to try to take some time out for yourself. If you carry on feeling so bad you will be ill. Your Dd is who she is you can't change it. You have to work with it. It sounds like she could be entering puberty to me. Both my older girls 22 and 15 regressed back to dolls and stuff for a while.. Their hormones are all over the place.
Dd2[nt] is the original shower dodger, she has to be told to get in the shower, Dd1 was the same but she swam most days so it wasn't sooo bad.
Dd1 [ possible AS] Didn't cope with periods well I am afraid to say, she needed lots of guidance and I had to nag about the grotty undies!!! YUK.
Please for the sake of all of you, try to find something positive to focus on, I do know how hard it is I can't leave Dd2 and Dd3 alone for more than 2 minutes before all hell lets loose and yet today they have played playmobil together for over and hour[hshock].
Dd3[8] is probabl yon the spectrum to we just don't know where abouts yet.
Don't worry about ranting, thats what we are here for.
Try to have a break if you can[hsmile].
I am really lucky this week, Dd1 has just taken Dd2 away for a couple of days and OH is off work to spend time with me and Dd3. Although I think he woud secretly rather be at work. [hgrin].

Hi Phoenix, I found it took a while to come to terms with ds2 (9)dx, a process all of its own really. Sounds like you could do with a break and I think it's very healthy to express how you are feeling x

You think you're late? DS is 16 in two weeks and has just been diagnosed with Aspergers. It's a bummer innit.
Parts of me are screaming at myself "you knew it, you knew it". But I know that his physical disability, the fact that he has always attended special school, been in a very small group of teachers, staff and classmates helped to disguise the real truth. It was so easy to say 'that's just X's funny little ways'.
And parts of me are whispering in a soothing voice "now you know for sure. You can compensate, you can help him more, you won't get so unreasonably angry with him, now you know he can't actually help it, you can find better ways to teach him things other than just showing him once and thinking that's it like you might with other teenagers'.

Never mind your Topsy and Tim addict! Mine has completed his Sciences GCSE a year early and will be taking the rest of his GCSEs in 6 months and is currently playing Disney Singalong on the Playstation.
I forgive your emotional outburst, if you forgive my dealing with it all tongue in cheek and flippantly. It's the only way I think I'll get through!

Thank you for the replies.

I had not realised I was causing confusion with the name phoenix. Thank you for pointing this out stark. I am new here so of course I will namechange.

Guess I'm not the only one trying to raise myself from the ashes (again)

SN Teens. I don't tend to start threads, but I do answer them wherever they get posted in sn.
Mine reverts in the holidays and at home. He can play the game and walk the tightrope at school, at home he relaxes and behaves like a 10 year old. He can switch out of it if I need him to, but it is his way of dealing with the stress.
Lego, DVDs for younger children mix with appropriate hobbies for a 15 YO
Your DD is presumably handling secondary, have you been told otherwise by teachers?
She needs downtime to avoid overload.
he is different to his peers, but I have the skin of a rhino and flameproof knickers, so others judging me is irrelevant.
Cleanliness. He has a daily bath, washes his hair every other day, uses roll-on because he can;t cope with sprays, shaves for school.
Cleanses and moisturises, teeth brushing.
This all requires strict routines, supervised at first and periodically checked up on ever since.
He belongs to several clubs and activities that give him a group to socialise with, but has no casual friends and doesn't care.
It's hard, feel free to pm me if I can help at all, or if you want to rant about stuff you might not want on the open web.

He was watching Chitty Chitty Bang Bang in his room this morning.
And dancing.
I thought it was an earthquake

DS was 9 when he got his dx, he's 11 now and I'm still learning and adjusting. It takes time to get over the shock, so be kind to yourself and be glad that there's time for you to learn ways to support her. Remember you have to look after yourself to be able to look after her.

It's very common for children with AS to be socially immature - DS likes his Transformers and Dr Who. I'm happy to let him follow his own interests as long as he's not at risk of being teased about it.

Making friends has always been a struggle for us - he didn't really have friends in primary, but he's now at a special secondary school and the kids there are so much more accepting (and are just as quirky as he is).

Goblin, finding your posts quite reassuring myself actually, hope pheonixagain is too.
Can I ask how far you push/try to 'train' him? I tried to discuss this at a meeting with his drs yesterday. I don't want to go too far.
And girls - any problems there?
Would you rather I PM'd you?

I've pm'd you springlamb

Hi Pheonix I'm new here but I have been reading this page with interest as my DD1 was dx with AS 6 weeks ago, she is 10. My DH and I are too coming to terms with the dx although we have suspected for the last couple of years that there may be a problem. We have yet to tell DD of the dx and would welcome some advice on how to go about explaining it. Also I am concerned about her starting puberty and starting at Secondary school.

phoenixagain welcome to the club that no-one asked to join

Firstly, I think I can speak for everyone here and say that while we are damned good at practical, system-navigating advice, we are also a bunch of caring, sensitive individuals, and we all have down days and hard weeks. We can do virutal tea & sympathy too! Hugs are rarer, on MN, but they do happen, so watch out.

Secondly, believe me when I say that no matter when you got that dx, you would be in the same state of shock. My DD was flagged as having SN at 2.9 and got her official dxs of epilepsy at 3.1 and her brain malformation at 3.5, which seemed very late to me I still, almost 2 years on, think "how did they not know?" "we were right, there was something".

Do keep posting, and don't be afraid to be a mess - we all are, mostly.

Agree with Lougle - there's a good bunch of people on here. I am still trying to get a dx (ds is 10) and would rather have had one years ago but life's never straightforward is it? Stick around and you'll get loads if great advice and support.

fighting I really like your new name btw and hope you keep it past halloween. I think it is very apt when refering to bloody unthinking pen-pushers who tow the party-line for no reason they can remember.

We are late comers to dx.. Ds2 was just kind of quirky .. Until he was about 7.. ( but lots of dc's are quirky and imature At that age.. And then it starts to really show when you expect the to grow up a bit and they don't!)Then all hell broke loose!

Ds2 is now just a few days away from being 12.. And hormones have kicked in.. What is general stinking pre teen and what is the ASD? .. Tbh I don't really think about it.. We just deal with the issues.

Personal hygene.. the rule in this house is shower everyday.. Use roll on ( again because he can't cole with sprays).. we have a box system and routine for clothes, for cleans and dirties.. Because if the cleans aren't in view.. He won't think to go find them.

We have had a chat about 'social camoflage' .. And ds1 helps out with his fashion sense...
He hates hair cuts.. So we go for a floppy beach/ surfer cut ( so it doesn't have to be cut so often)... I brush and style his hair everyday.. I clean his teeth for him.. and I change his bedding every other day.. ( because he blows his nose on his duvet).

I think what I'm trying to say is we have certain rules and rituals to make sure things are done..

Barring that in the home he plays at the same if not lower maturity than my dd who is four years younger...
( it's not worth getting stressed over).. He doesn't chat or play with his brother or sister.. But.. His smile when he's content and happy is the best ever..

Not a bump of an old thread!

I just wanted to say that I have namechanged to 'Tangenttamer' from 'Phoenixagain' which was confusing people as someone else uses a similar name.

Also thank you so much for so much practical advice. I have read and digested everything that you all have said.

I have had a terrible week.

Unbelievable regression from DD. I did not know she was capable of going so far backwards as we have never seen her like that before. DD's immaturity was always in her interests and understanding but never in behaviours.

It goes to show how much stress affects ASD children. DD started secondary in September and obviously this half-term has been her opportunity to "let it all out".

Also she does seem to be playing on her diagnosis? DD was glad to get dx but now seems to use it as an excuse for never having to control herself or think for herself! DD was not like this before.

Any thoughts?

Many thanks

Sorry I have actually bumped the thread. I can't stop talking once I get on here.

If there was a mn sn vote, I'm sure it would be in favour of banning autumn half term... from what I read here we all dread it. Secondary transition is also a very difficult time for all dc on the spectrum... so although things are terrible now, there is a cause and hopefully they should improve to some extent.

Are you happy with the support dd is getting at school? Is it worth keeping a diary of her behaviours at home to discuss with the senco? High school has loads more transitions during the day than primary. Can more be done to help her the navigate the different subjects / classrooms/ teachers /students?

I'm not sure if your dd has a statement (and forgive me if I've missed it) but if not, it might be time to apply for one. And to apply for DLA, if writing down her difficulties doesn't feel too much right now.

Like the new name btw.

Thanks mariagoretti

Secondary school have been trying very hard so far. They have strategies for coping with break and lunchtimes. They have a member of staff for DD to approach when in difficulty.

We have no statement. Like I say, this is a bombshell. The ASD bomb was in DD waiting to go off.

DD was a model pupil with excellent grades. But at about age 9 she stopped developing and her peers started to reject her strange interests and behaviours (apparently was great in class but ran around the playground like a greyhound!)

DD was always very stubborn and slow to learn certain things like riding a bike. But she was my first child and she didn't really stand out amongst my circle of friends until about the age of 9. Before that she was just a tomboy..........

I have been thinking about DLA.

Keeping a diary is a great idea.

Hi there Tangenttamer

I feel for you. I have one early and one late diagnosed child as each individual is so different.

It's really painful and there is so much to do it can feel overwhelming.

I find it helps to remember that although a diagnosis seems to change things they are still the same person really....

IMO a correct diagnosis can be the start of getting appropriate support.

tangenttamer

I would seriously apply for the Statement for your DD asap. You do not need school's permission to do it and having this in place at school may make her life there a bit easier. IPSEA have model letters you can use www.ipsea.org.uk.

DLA is also worth applying for too but ensure you receive outside help from someone like Cerebra to complete the avalanche of the form.

My DS2 was diagnosed at 12 and I was really miserable for ages. I had spent 12 years expecting him to turn into DS1, which of course he didn't. We went through some really bad times. He gave up all his outside activities when he went to Secondary school and then became violent and aggessive as well as allergic to personal hygiene and even more difficult at school. He never regressed because he was always behind and was still lining up cars and playing with them on the landing at 15.
Good news is he is coping much better now (at nearly 16) and has actually been allowed to go on work experience like everyone else, which I never thought would happen.
It is tough (and the period stuff seems to be particularly hard) but sometimes there is a light at the end of the tunnel.

DS1 is 12 and we are waiting for an official dx, but it is pretty much a forgone conclusion. Something I guess deep down I ahve always known.

I hate the holidays and love them at the same time iyswim?