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Those of you with DDs with ASD

(42 Posts)
osospecial Thu 29-Aug-13 14:30:45

Hi, DD age4 was dx with ASD by a private paed. There has always been a ? over ASD because although her speech, communication and social skills are severely effected and she has sensory problem ( hypo sensitive) she has no rigid routines she has to follow or funny rituals.
Private paed said it seems to be less common for girls to display those traits anyway and was satisfied dd still met the criteria for ASD. Saw the NHS Paed again today and although she has agreed to bring ASD assesment forward and agrees it seems likely now she is still fixating on the fact DD doesn't have THAT particular trait. So I'm just curious to see what you guys think?

ArthurPewty Thu 29-Aug-13 14:39:53

But if you were to tell her you were going to the park, and then have a last minute change of plans, how would she cope? Thats ridigity too.

Does she correct your english? Mommy, its not Santa's BAG, it his SACK. etc.

Does she play the same games over and over, or the same things with her toys? IE do her dolls get dressed, eat, and then have a bath and go to bed, every time she plays?

They dont have to have routines or special rituals, they just have to have rigid thinking.

I have two girls with HFA/HF ASD, btw. One is 5, one is almost 10.

sickofsocalledexperts Thu 29-Aug-13 14:40:16

I brlieve part of the triad covering rigid behaviours can also cover flapping or funny repetitive movements - my boy has those, but no routine stuff. My DSD (very hf asd) was actually more routiney at that age, eg always wanting a blue cup, so not sure re gender differences

sickofsocalledexperts Thu 29-Aug-13 14:46:26

Yes, here it is. The NHS paed clerly hasnt read the triad of impairments properly! Interestingly, my boy couldnt care less about routines or changes of plan, but does have lots of odd movments

c. Restricted, repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following six:

encompassing preoccupation with stereotyped and restricted patterns of interest.
specific attachments to unusual objects.
apparently compulsive adherence to specific, non-functional routines or rituals.
stereotyped and repetitive motor mannerisms.
preoccupations with part-objects or non-functional elements of play material.
distress over changes in small, non-functional details of the environment.

autumnsmum Thu 29-Aug-13 14:47:33

My dd2 can be quite rigid ie if we go to McDonald's once when shopping she expects it every time

RippingYarns Thu 29-Aug-13 14:53:56

DDs rigid behaviour can mean she won't join in gym class if the coach changes without her knowing

also she needs certain clothes to do certain activities, will not wear a ballet leotard (even though it was for a show and is sparkly and coloured) for trampolining, because it's a ballet one...

always favours a certain spoon for certain foods, needs a spoon to eat peas, even though she won't eat the peas...

if we have to take a detour in the car, but still en route to the same place, she has huge anxiety about us getting lost...

all to do with her rigidity of thought/behaviour

chocnomore Thu 29-Aug-13 14:58:36

DD (5) has autism with severe s&l difficulties.

she does not rely on routine at all, we can be really spontaneous with her and with the things we do. no issues at all.

but the rigidity, the repetitive behaviours, restricted interests are all there.

autumnsmum Thu 29-Aug-13 15:11:12

My dd doesn't have any intrests as such but she is very keen on opening a d shutting things

Handywoman Thu 29-Aug-13 16:14:07

Same here, we can be pretty spontaneous with our plans but she nonetheless has a fairly rigid way of thinking. She never played with dolls, but has played with cuddly toys. This seems imaginitive, until you realize each toy gets up then go back to sleep repetitively, over and over. Has subtle routines, the odd ritual involving choice of breakfast. Also a fascination with shells, stones , bottle tops, marbles. She will play intensely with them, the odd passing word or two may be audible. It is impossible to deduce any narrative. She has no formal dx though (await NHS ADOS).

happijackru Thu 29-Aug-13 16:20:57

hi, my dd was diagnosed with ASD just before 3 by NHS Child Development Centre.
She actually displays very little routine type behaviour, rather she almost seems oblivious to changes in lots of ways. She does have some transition issues and some sensory issues to do with limiting foods and only wearing certain clothes/shoes.
I think maybe routine/rigid behaviours may become obvious as she gets older and is expected to follow other people's routines more eg: at school (current preschool is very relaxed generally and lets her flit from activity to activity at will).
Doing research and talking to people re girls and autism they can be very different to boys sometimes and that more and more this is being looked into.

sunshine175 Thu 29-Aug-13 16:51:39

My dd is 11. From being small she had meltdowns and nursery were worried about her social interaction. I missed a lot of her other behaviours when she was small as they were subtle. She doesn't flap but she jumps and skips. It is now really noticeable age 11 as everyone else has stopped this and she skips up and down if anxious.

Her special interests were peppa pig and Thomas. Not unusual at 5 but she still has to watch them now at 11 - they are now unusual.

She doesn't have a set routine each day but if day to day things change with no notice she gets very stressed. We need to leave the house early tomorrow and this has stressed her out. She gets upset by changes of teacher or if an activity changes time or new situations. To be honest her difficulties have become more obvious as she has got older and she got a diagnosis age 10 sad.

thornrose Thu 29-Aug-13 17:05:30

My dd was diagnosed with Aspergers at 7.

When she started reception class she found it really hard. She hated queuing, waiting, sitting and being told to stop one activity and move on to another one.

At home most of these hadn't stood out, after all lots of children screamed when they had to leave the park etc.

At home at that age her main issues were sensory. She was articulate, funny, chatty and played on her own happily.

She liked watching the same DVD over and over and did like routine but again not that unusual compared to other children her age.

Looking back on it I constantly, almost subconsciously modified situations to avoid triggers if that makes sense? Looking around me other parents didn't have to do that.

School obviously didn't do that and that's when her problems really started.

Sorry that's so long blush

osospecial Thu 29-Aug-13 17:34:50

thanks for the responses.
She doesnt have enough language to correct my english and doesnt seem to understand if i tell her where we are going most of the time so thats hard to tell but im wondering if these issues would become more obvious as she gets older and she can explain more because sometimes she gets upset and I have no idea why.
She is mostly happy though and OT thought her sensory seeking and always searching for new/different sensory input outweighs her desire for a routine.
She has liked the same 2 tv programmes for 3 years though and wouldnt watch anything else until a couple of weeks ago. she does have some little funny habits like taking 3 out of 4 tubes of paint out of the box (always the same colours) and lining them up but wouldnt care if i picked them up and put them straight back in.
She has been having tantrums since starting school as she doesnt like/finds it difficult having to sit still and do what others want her to do for very long (she's in an assessment unit so she has 1:1 attention aswell) but didnt think that was down to a change in routine just that she is usually pleasing herself and rarely sits still.
Id say she has some restricted interests but not rigid behaviour (at the moment anyway)
she doesnt have any imaginery play with dolls/teddys etc and enjoys things like collecting lots of little stones in a pot, counting them sometimes, she used to sit in my mums garden and do this for ages, empty it out and start again. she only really plays with things like peg puzzles and jigsaws and the ipad.

FrussoHathor Thu 29-Aug-13 18:19:09

Dd (5) asd (dx before 4) and S&L delay. And sensory seeking.

What if you put the paint in a different order? What if you swap a colour? What if you only let her have 2?

Lining things up doesn't have to be in a straight line or have and correlation to the item next to it. The stones into a pot is the behaviour.

Watch the imaginative play carefully.
Does she play the same games with her toys. (Not always the same toys, but the same game) watch closely. My dd plays on a loop, where 2-3 toys have a certain interaction. This is played repetitively. Some time with a different ending but not always. Eg, the cow kisses the monkey and the monkey goes up the stairs and out the window. The monkey never goes out the window before the cow kisses it. Other things happen. But the basis is always the same. And it is always a learnt behaviour.

ArthurPewty Thu 29-Aug-13 20:12:18

That sounds like autism to me. Make sure you tell the people diagnosing what you just told us.

osospecial Thu 29-Aug-13 21:47:04

Thanks Arthur, maybe I should write these things down as I remember them and as I notice any new ones as I dont always remember everything during the appointments

osospecial Thu 29-Aug-13 21:53:02

Frusso, if I changed the order she would just change it back, not sure if I only gave her 2, will have to try that. if she's doing her peg puzzle in a particular order which she usually does and I try join in and place a piece in the wrong order she just calmly takes my piece back out and continues it her way!

Ineedmorepatience Thu 29-Aug-13 22:00:43

I would recommend keeping a diary of any behaviours which seem unsual to you. Make a note of the behaviour, what happened before it (if appropriate) and how you dealt with it (if necessary).

Take a copy of the diary to your next appointment and give it to the proff to read.

My diary was one of the things that made one proff sit up and take notice. It took us a long time to get Dd3 a diagnosis and we had been fobbed off many times before I started the diary.

Good luck smile

FrussoHathor Fri 30-Aug-13 00:39:57

oso that is rigidity.
They don't have to have a full blown meltdown over it for it to be there.
Dd will tolerate me interfering to a point. If I keep pushing it. (Moving something out of her order) She gets more agitated. Although she is more likely to tolerate a stranger doing it.

FreshWest Fri 30-Aug-13 16:56:48

oso I could have written your post word for word. Dd (5) has just been diagnosed with ASD, but we had a struggle with the paed as he was adamant that her eye contact was good therefore it couldn't be ASD hmm , failing to grasp that her eye contact was not always entirely appropriate either.
The ed psych actually put it quite well in terms of her not caring about changes to routine in that he said maybe she is so immersed in her own world it doesn't really register. I agree up to a point.

However reading some of the above posts I can see she is rigid more than routine obsessed. She doesn't bother if I move something out of its order but she will put it straight back with a quizzical glance at me.

I agree that you need to point out to the paed (as i had to) that not having the one trait does not mean she doesn't have ASD.

osospecial Fri 30-Aug-13 19:13:20

Thanks both. Freshwest your situation does sound very similar and your DD sounds a lot like mine.
With the private paed she didn't 'sit on the fence' at all and said DD had ASD very confidently as all the other issues suggested this, and all her previous reports from other proffessionals stated these difficulties. she didn't think it was a big deal that DD didn't have difficulties with this one trait compared with the rest of the evidence.

I'm starting to realise DD is more rigid in her ways than routine obsessed too. I've actually had trouble this last week over her new pair of shoes and realise maybe this is down to not liking the change, she hates having her feet measured in the shoe shop and hates her new shoes and refuses to put them on. This happens every time she has new shoes and it takes a while to coax her to wear them. Will definitely write this one down as not seeing paed again until dec now! Paed asked if she gets upset if we change our routine so I always say no as she doesn't but she hasn't asked about rigidness.

Handywoman Fri 30-Aug-13 19:30:39

We have had six months of new pants kept in top drawer til they were no longer felt to be 'too new' private diagnostic ed psych held back from giving dd2 a final dx

RippingYarns Fri 30-Aug-13 19:42:57

i'm dreading the school shoe shop sad

we have to keep the last 2 pairs of whatever shoes (school/trainers etc) as DD misses the old ones and pines after them and then won't wear the new ones until she can accept the old ones are done in

sounds daft when i put it into words, but i know people here will understand

osospecial Fri 30-Aug-13 19:47:40

What made me angry with NHS paed yest was the fact DD was on a 2 year waiting list for assessment but when I told her yest that we had a private dx a couple of weeks ago she said she would move DDs assessment forward to Jan 2014 as she thought it was necessary now dd hadnt made much progress and it was only really a 2 year waiting list for DC who they wanted to 'wait and see' and weren't severely affected, while telling me a few moments later if DD didn't acquire proper speech by the time she was 6 years old she would basically have lifelong problems (she had told me this 6yrs old part before). But she was quite willing to wait until DD turns 5 for any dx angry
She said they do tell LEA not to wait for dx and should provide Dc with any help they need regardless of dx but my DDs best option for school is a local primary with autistic unit and you cannot access that without a dx! I told her that.
Handywomen- it's so frustrating isn't it, each time we went back to paed we were told let's wait and see in 6 months etc etc that's a big part of why I went private, I just wanted to be able to move forwards. We saw Daphne Keen as I'd read on here she is particularly knowledgeable about girls and I was impressed by her. I don't feel like I'm going back and for in my own mind about it anymore even if NHS paed still is!

osospecial Fri 30-Aug-13 19:52:57

Ripping yarns, it's the worst time of the year to go shoe shopping! We were only in there 10 min but boy was it a stressful 10 min!, with all the staring from everyone else in the shop at DDs meltdown and wrestling with her to get her feet measured and try the new shoes on! Keep meaning to buy one of those DIY feet measuring things from clarks online!

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