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Please could I have some advice -sibling of AS teen....feeling desperate

(10 Posts)
crochetsavesmysanity Mon 18-Aug-14 12:42:09

Hi

I am a long term poster, but had to change my username when the Heartbleed thing kicked off.

I am ridiculously upset and confused today and would really appreciate the views and opinions of the people on this board - between us all, we are definitely the experts smile

Apologies in advance for the long post and ramblings -I can't even think straight today.

Basically, DD1 is 13 and has dx of AS, Dyspraxia and SPD . She got her dx when she was 8.

DD2 is now 9. When I initially 'compared' her to DD1, she seemed to be NT ie no real sensory issues, no problems with changes in routine and so on.
She has no problems with many things DD1 struggled with and is empathetic. So I kind of thought that the combination of those characteristics precluded ASD. Maybe I didn't want to see any problems.

However, I have had a few occassions over the years when I have wondered and worried a bit. For example, as she has got older, she is more and more upset by changes in environment eg if her room is tidied or rearranged. She won't throw anything away and salvages bits of paper, tags and other odds and ends from bins (DD1 used to do this). She is upset when we decorate and asked for samples of the old wallpaper;etc.

She is also becoming chronically disorganised and unable to remember and retain instructions.

My main concerns though, are that she is currently starting to have meltdowns, almost identical to the ones dd1 had at the same age. She completely loses control and this morning, she was hitting herself.
These have appeared over the past couple of months and increased in frequency. She is utterly unreachable during these episodes.

Also, when she started school 5 years ago, she became completely withdrawn and was virtually mute in class. She was always flagged as 'the quiet one' and she would refuse to speak to adults or look at them . I know this is an ASD flag, but I always saw it as her being incredibly shy.
This has improved over the years, but she is still extremely reluctant to talk to strangers and will become clingy and anxious.

She also suffers with extreme anxiety and has problems sleeping and has various phobias and, now, routines, she likes to follow.

Reading all of this back, I can see loads of ASD markers, but she also has so many characteristics which are kind of the opposite of ASD, IYKWIM?
I am also aware that, at almost 10, she is entering puberty.

Does anyone else have a child whose AS only become apparent as they got older?
I feel upset and stressed and just not sure what to do.
There is also guilt, because dd1 has taken up the bulk of my attention for years (she is HE) and I feel like I havent been noticing the signs and maybe DD2 just has a totally different AS presentation.

Thanks if you got this far. Any advice or opinions welcome. I am on my way out now, but will check back later.

PolterGoose Mon 18-Aug-14 15:19:05

It is really really common for some girls with AS (and boys, generally the more subtle presentations) to not be picked up until around 11 or even later. Common times for developmental differences to show do seem to be around the times of the big childhood transitions eg starting nursery, starting school, the move to juniors, the move to secondary and then around options time.

crochetsavesmysanity Mon 18-Aug-14 16:49:21

Thanks poltergoose

I think that DD2 has more subtle AS traits, which may be why they have been masked a bit over the years.

Just wish I knew what to do now.

OneInEight Mon 18-Aug-14 17:02:01

Both of mine didn't really have significant problems until year 4 - ds1 just before his 9th birthday and his twin about six months later - both are now in specialist schools and diagnosed AS. In hindsight, yes, there were some issues prior to this but I don't think anyone would have diagnosed them prior to age 9. We were told it was quite a common age to run into difficulties.

crochetsavesmysanity Mon 18-Aug-14 17:07:20

OneinEight thanks for sharing that. Can I ask what kind of issues started to rear their heads at age 9 please?

DD2 has always had issues at school and in any extra curricular stuff.

This is new to me, because dd1 had significant issues from age 2.

OneInEight Mon 18-Aug-14 17:31:16

The biggest sign was meltdowns of increasing ferocity. They tended to do this more at school than at home certainly initially.

There were also social difficulties - lots of falling outs in the playground (and classroom), no party invites, inability to do group work.

ds2 became very, very withdrawn.

Teacher reports became increasingly negative - rude, obstinate, disrespectful etc etc.

Sensory issues - e.g. noise and touch also became much more of an issue at this age I think because of the heightened anxiety although in truth they had never liked busy places like parties and playgrounds anyway just hadn't twigged why.

Behaviour in extra-curricular activities was never great even though they wanted to take part.

crochetsavesmysanity Mon 18-Aug-14 19:02:19

Thanks oneineight. That sounds tough for all of you.

DD2 is fine at school behaviour-wise,but is very shy, anxious and withdrawn there.

She had horrendous meltdowns up to age 5, then they calmed down.
We have seen them come back recently -she had one last night and one this morning.

crochetsavesmysanity Mon 18-Aug-14 19:06:22

Another few flags I have thought of:

She sobbed during the last two days of her holiday and was weepy, unsettled and emotional for days after she got back.
She had speech delay and until she was almost 4, nobody could understand her.
Her body language, especially at school, always makes me sad -hunched shoulders, eyes to the floor, full of tension.
She's had loads of problems at school and rarely a day goes by when she doesn't get upset about going.

I just don't know if its anxiety, stress, or something more.

blanklook Tue 19-Aug-14 01:00:08

I'd definitely go for referral, could you HE her as well? This just sounds so awfully sad for her, poor kid.

"Her body language, especially at school, always makes me sad -hunched shoulders, eyes to the floor, full of tension.
She's had loads of problems at school and rarely a day goes by when she doesn't get upset about going."

crochetsavesmysanity Tue 19-Aug-14 10:01:14

I know, I feek physically sick taking her to school blanklook
We have discussed HE loads over the past couple of years, but she has resisted so far because she says she would miss her friends.

However, we have to accept that she is only 9 and therefore not best placed to be objective.

I have more than a strong feeling that we will be heading that way.

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