DD possibly on Autistic spectrum-not coping well

[Suzyinwonderland]

Hi

When I picked DD up from pre school yesterday I was pulled to one side and told that they've had a terrible day with her. Lots of BIG tantrums, hitting children AND staff and in general just been incredibly disobedient. That was only for the last 40 mins or so, never the less, not good.

One of the staff suggested she may be on the Autistic spectrum and that I need to get the 'ball rolling'.

It really is a difficult one because she has always struggled socially, ie she is very over the top affectionate at times with other children, doesn't understand the importance of personal space and tends to jump everywhere. She has a very good imagination and good eye contact. She can also be an absolute angel for weeks at a time. She had 8 session in a row before end of term when she was perfectly behaved.

Because of the inconsistancy, I have yet to take her to a health visitor. It sometimes seems as though she can control it and other times it's like she has no control atall.

Had lots of tears over this. Trying to keep my anxiety away from DD, but it's very hard.

Can anyone help? Does this ring true to anyone else? Advice much appreciated. :)

Again, a very nice was of putting it. Do you almost feel like it's a gift sometimes rather than a curse? I've heard several people put it like that.

Suzy, some of it has advantages. Other bits of it are a pain in the wotsit. Most of us, they found, can do at least one extraordinary thing thanks to having some senses that are on average three times more detailed than those of other people. But if society won't let us do that extraordinary thing because they're too busy thinking we're tragic burdens, it's 'orrible.
Things are changing in society, thankfully.

suzy, before the pre-school mentioned anything, did you have any concerns?

your story sounds similar to mine. when dd2 started pre-school, they pulled me aside after a while and suggested we go down the CDC route and suggested autism to us. however we already had concerns.

by the time dd2's CDC appointment came through, the pre-school had backtracked and said they had no concerns. dd2 did have a speech delay, and had intensive SALT for a couple of years. which helped with a lot of the issues she was experiences.

However, once she hit 7yrs old her differences and quirks were becoming more and more obvious, and she was desperatly unhappy. my other girls reported back to me that dd2 had no friends, and spend playtimes, lunchtimes alone in the playground. it broke my heart to see my lovely happy girl so down all the time. she was also getting a lot more panic-y over everything and crying.

i spoke to SENCo at the school, and they have started her on a social skills group, and put some things in place to make her feel more secure. between the senco and myself we have decided to let dd2 settle into the juniors, and after xmas will be going back down the dx route for possible ASD.

part of me worries i have left it late, but the other part of me knows, from experience, that dd2 differculties will have been downplayed in the past due to dh illness, the stress the family was under, and her age as well. its only as she has gotton older thats its more obvious iyswim.

much hugs for you, and keep fighting if you want to, but if its the right thing for you to do, then dont worry about stepping back from it for a while. i know sdome wont agree with me, but i feel that i have done the best by dd2 this way. as long as your dd is happy and secure, thats whats matters.

Thanks everyone. I'm just going to have to learn to relax I think and except that all I can do is my best for her.

In the day time I seem to get things sorted in my head, but at night times, I get very upset and teary. It's the not knowing that's a killer.

This is the sort of checklist that professionals work through with families with primary school children before reaching a diagnosis or thinking about other things like sensory processing issues or dyspraxia, if it helps: (based on the sort of testing done by the Autism Research Centre in Cambridge - full versions available on their website)

1.Does s/he join in playing games with other children easily?

1. Does s/he come up to you spontaneously for a chat and is interested in you rather than just telling you information and going again?
2. Was s/he speaking by 2 years old in a fairly usual way for 2yr olds?
3. Is it important to him/her to fit in with the peer group ? have the same toys or clothes or interests as them?
4. Does s/he appear to notice unusual tiny details that others miss ? sight, sound, smell etc?
5. Does s/he tend to take things you say literally when you only meant them as an expression?
6. When s/he was 3 years old, did s/he spend a lot of time pretending and involving people with the play in an equal and friendly way (e.g., play-acting being a superhero, or holding teddy?s tea parties)?
7. Does s/he like to do things over and over again, in the same way all the time, and get very upset if that routine is broken?
8. Can s/he keep a two-way conversation going?

10. Does s/he have an interest or interests which takes up so much time that s/he does little else? 11. Does s/he have real friends, rather than just lots of vague acquaintances? 12. Does s/he often bring you things s/he is interested in to show you and talk with you about them? 13. Does s/he enjoy jokes and friendly jostling with family? 14. Does s/he have difficulty understanding the rules for polite behaviour? 15. Does s/he appear to have an unusual memory for details? 16. Is his/her voice unusual (e.g., overly adult, ?posh?, flat, or very monotonous)? 17. Is s/he good at turn-taking in conversation? 18. Does s/he make normal eye-contact and seem able to ?read;? what your eye contact means and use eye-contact signalling to say how s/he is feeling? What about reading face expression and body language? 19. Does s/he have any unusual and repetitive movements? 20. Does s/he sometimes say ?you? or ?s/he? when s/he means ?I?? 21. Does s/he sometimes confuse the listener because of not explaining what s/he is talking about? 22. Does s/he often turn conversations to his/her favourite subject rather than following what the other person wants to talk about? 23 Does s/he have odd or unusual phrases or repeat phrases over and over again? 24 Are there any unusual sensory sensitivities or hyposensitivities? 25 Are there any unusual co-ordination issues?

That's brilliant. I've answered yes to several but only sometimes with others. Amberlight, I remember you saying that you work with Autistic people now. If I gave you her symptoms, would you be able to give me your opinion? Hope that's not asking too much.

It'd only be a set of thoughts and ideas though, not any sort of diagnosis or 'expert' report? I'm sure that I and many of the other mums here would be equally happy to join you in thinking things through, but only a proper professional team can make a diagnosis.

Well that's what I would usually think. It's only because you said that you obviously have a lot of experience with this. I obviously need a professional opinion, but I thought you would be able to help me more than most.

I've had lots of advice, opinions and support from lots of mums since starting this thread as everyone can see. It's been really helpfull. It's nice that people will take the time out to help a stranger, but never the less as stranger who is going through a very similar thing. :)

I've worked in the field for more than 12 years now, so I know a reasonable amount of the background stuff and work with many people. My experience is from being on the autism spectrum and having a dh and ds who are, etc. Glad to help with the thoughts, though.

Well I'm going to give it a go anyway. Grateful to anyone for feedback. I do understand it's not a professional opinion.

DD has a very active imagination and she does sometimes switch off. She can play with little figures for at least 30 mins at a time, that's not every day though. She will repeat things but when I ask her to stop she usually does. She goes through hitting phases ie, a few on and a few week off. She does have massive tantrums at pre school as i've said before, but then she can have weeks at a time when she's an angel and does everything that she's told. Her social skills are the big concern. She hasn't yet made a real friend. Nobody outside pre school. She can be incredibly full on, hugging and squealing around them. Very over excited. However, I have seen her play perfectly and have even seen children not want her to go home. As i've said before, it's the inconsistancy that confuses me and it really is very inconsistant. It's almost like she is 2 different people.

Any suggestions?

Truly not sure. What's she like if you surprise her with a sudden change of routine, e.g. suddenly deciding to go out for the day?

Oh that wouldn't bother her atall. If I read her a different story before she went to bed though or gave her a different blanket she'd be very upset. VERY.

It's a mystery, that's for sure.

How about things like her use of body language - can she use her body, face and eyes to convey different emotions?

Yes, very much so. However, when she 'switches', as I call it, she can just roll around on her back with her mouth open just looking at the ceiling and making strange noises. When she's like that I can't get through to her atall. Having said that, i'm still not sure if it IS something she can control or not. She tends to throw herself to the floor sometimes for no reason atall and then wont do anything that she's told. That's usually followed by a lot of aggression. She will often bounce everywhere. Including when I take her to the shops. She will usually stand in the middle of the shops jumping and singing at the top of her voice and when I ask her to stop she just says "mummy, stop it IM SINGING!!" Then I can take her out another day and she wont do this atall. She will just walk. Last few weeks though, that hasn't happened. Oh, and she still can't ride a trike. I heard that's a sign. My partner said though that she managed to get it moving for about 3 peddles the other day so again, it's just so confusing and conflicting.

Also forget to mention that she has a scarily good memory. It's always been something that the rest of my family have just been really quite proud about, but it's always concerned me. For example, she will remember what room she was in 2 years ago when she opened a certain present. She'll remember lots of little details somestimes too, such as what people might have been wearing. She can identify what something is like the tiny corner bit of a jigsaw,just a bit of red for example and she will know which jigsaw it came from. Although, she doesn't seem to have to detailed memory as much now. She could do jigsaws much quicker than I could. 50 peice ones sometimes. It's a mystery.

I think I'm as puzzled as you are, alas.

Any suggestions? I know it's difficult, but would you say that did sound on the Autistic spectrum? Does any of what i've described sound familliar?

Just been to talk to the headmaster of a school she possibly would be going to. Apparently they have many children there with problems of all sorts but no 1:1. Wondering whether or not that would be right for her as pre school seem to think that that's what she'll need. It was a lovely and calming school though. I think the atmosphere may help her.

Sounds similar to ds. He was good at jigsaws at 2 (seemingly no logical way in doing the jigsaw, but finished them quite quick), and memory for things, could identify quite a few cars, from bits of details. Phases of hitting. V. much a dancer going down the isles and loud. getting quite good imagination but always need to be in control and little need for routine, but comments if it changes. Expressive face and language, eye contact (looks like he is, but i think his not actually looking at the person). Bossy, does not listen much, needs constant promoting. Can have very repetitive speech and hand flapping, dancing/jumping licking when stressed (is at moment just starting school, but coping whilst at school).

He has a dx of HFA when he was 4. He was put on IEPs at his nursery/pre-school, and that little bit of help really worked for him - taking turns, waiting, interacting (with adult help). His just started school, second full day today, seems to be going ok. Teacher came to meet him and pre-school and he liked her and they've been supportive so looking good so far.

That's really good news! It's awful waiting around, wondering isn't it. My DD is supposed to be starting her reception term in january and I can't believe it. I looked around at all the other children there today, sitting, being quiet, doing as they were told and I thought ..........I don't think so.

The probably with holding her back til september is that she will literally be thrown in the deep end and probably be expected to do much more than she's capable. On the other hand the teacher seems lovely and has an instant calming affect on the children. The school has now got a good reputation for reception class and early years and they really are the crucial ones aren't they.

Did you ds ever sit still? Did he have a concentration span? Did he every have megga tantrums at nursery, even hitting?

Suzy, honestly not sure. Elements of it are typical of autism, but whether it's anything like enough to count as a diagnosable level I'm not sure at all. Apols for patchy responses - dh is very unwell at the moment and my brain is a bit fried.

Don't apoligise. That's life! Hope things get better soon.

I think everybody has pretty much had the same opinion actually. Certain aspects of her are clearly pointing in that direction but so many aren't.

Can I ask one final question though. I'll stop after this, I promise. Is it common for Autistic behaviour to be that inconsistant?

No, it's not that common. But it's certainly not impossible.

No one can say without observations, but may probably warrants further investigation. I decided better to be safe then sorry and went with the process, it was SALT that recommended ds have developement test and other obs. He was about 9months-19months behind in a variety of areas. Took 2 years to a dx, it is long process, with observations, assessments and questions, and a team of people. As paed, says ds will not have any major problems till he goes to secondary school and i can see the issues that will arise. Alot of aspergers/HFA does not really present itself till older 6-7 years old as generally they can cope reasonably well, and behaviour attributed to quirks, or strong willed etc.

Autsim is in our family, ranging from severe to asperger, and a patterns (well guessing i'm saying triad of impairments) between these members can be seen.

I tend to find ds inconsistent, when he makes advances developmentally all his traits seem to come out. Also seems to go through periods of lovely to periods of being really difficult.

I am increasing being told i'm always get things wrong and he is right . Ds has never really done major meltdowns, worst when his peers would come up and say hello to him (rather than the other way round when he was ready). Sits still ok, and absolutely loves books. concentration span, well depends what it is, improved with practise.

But having a nursery that supported him, that made all the difference and portage was by far the best intervention he could have had, he caught up developmentally in a number of things in just 9 months.

It's good to hear that your son is catching up with his development. I suppose though, it feels as though you can't fully relax when you're being told new problems will arise when he starts secondary school. I suppose as a parent you can never fully relax

Is that a definite with secondary school or is that just what ususally happens. Have to admit when DD has had a good day, like she has today I have to stop myself getting too excited, otherwise I get knocked back down again and lets face it, it really is an emotional rollercoaster.