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me or them, help?

(14 Posts)
desprodad Wed 28-Nov-12 22:09:29

i have a 3 and a half year old girl that was seen by a doctor in the paediatric assessment clinic at kaleidoscope in lewisham. the doctor dismissed every trait i mentioned apart from continuing with the SALT. i have battled over what course of action to take for months and although i felt relieved at the thought she was ok, the fact, she still displays the traits is worrying. this is what the doctor told me: the tip-toeing is only without shoes and thus, if she was ASD she would be doing it all the time, although i did state if she could do it with the shoes on, i'm sure she would, the lining up of objects was a phase of development that every child goes through and would lose later on, the hoover noise only bothered her sometimes and therefore cannot be ASD, the repeat of some words after i said them and the repeating of questions was to get a better understanding and hence developmental since she was delayed in speech and language skills. recently my girl has began to babble (sometimes) rather than talk properly and when upset tries to bite the back of her hand (sometimes), she puts this down to the fact she is the baby of the family. has anyone else had this information given to them? i told her because she was a girl she could be so easily missed but she stated that she had been in this field for 7 years and was good at spotting the girls with ASD and thought my girl was doing just fine, hence has closed her file. she was seen at this clinic, with another doctor 17 months ago, and again the only thing she picked up on was speech and language delay. i have to say after two specialists who believe she is developing well, plus the fact no one else sees what i see, which includes my wife, maybe i've got it wrong??? or has 1 consultant said to me we are all autistic. please help?

woolyandtig Wed 28-Nov-12 23:06:51


We or should I say I! Have this alot.
If you have these feelings then u might want to get another opinion from someone else.
I have questioned myself time and time again about my dd, have been told by hv and a peds doc that I was an over anxious mum. dd is now 5 and I have finaly got somewhere however the school dont seem to be able to see anything! So im having to fight for dx.
All I wanted to say realy is that you are the parent and only you know your child best. If u need a dx to get the support, dont give up.
Good luck

mariammama Wed 28-Nov-12 23:11:39

So you've got what sound like valid reasons to be concerned. 2 different paediatricians have fobbed you off. Also your wife. The speech is acknowledged and being dealt with, but nothing is. It's been another few months without improvement. You hope you're wrong, but she's perhaps sort of regressing.

Keep a diary of your worries. and the odd behaviours. Video some bits. Talk to the SLT as well, specifically mentioning joint attention skills, social interaction, flexibility and social imagination. Have a look at this this this and this and choose a technique to learn. Doing something useful yourself now is probably the best way to relieve anxiety.

If you're right, you won't be fobbed off so successfully next time. If you're wrong, you've meanwhile pushed her development a bit forward. Which can only help the speech and the techniques are quite helpful for any young child.

coff33pot Thu 29-Nov-12 00:12:38

Agree wholeheartedly to starting up a diary. It helped greatly to show further professionals.

Also she is young and has yet to start school. Keep another diary then also as sometimes profs wait to see the outcome of mixing with peers at school and how she reacts socially. Also opinions from school if they detect difficulties are beneficial to enforce further investigation.

Good luck x

marchduck Fri 30-Nov-12 00:23:40

desprodad, yes, keep a diary.

From what I understand (though I may be wrong) some of the traits themselves can be intermittent, can change, or are permanent. For example, my DS used to line up cars when he was a toddler (way before I knew of the existence of traits). He quickly grew out out of it, and is NT. On the other hand, my DD never really lined up, but she loves to play by taking items out of one object and putting them in to something else. She has not grown out of this. She is sometimes bothered by hand-dryers, but at other times, she is not. She also went through a phase of biting the back of her hands when she was upset. She doesn't do that anymore; now she covers her eyes with her hands.

My DD (3.11) has had recent DX. I wish I had spotted the signs earlier. My family are brilliant, but I think they still hope that DD will grow out of this. So I know what it is to be alone with your concerns. Does your Dd attend a pre-school or nursery - would they be able to provide some feedback to you, and perhaps reinforce what you are trying to tell your DW.

I think it so brilliant that you are fighting the corner for your DD; all the best to you both.

desprodad Fri 30-Nov-12 19:58:21

thanks everyone - i'll start the diary again. i did keep one for awhile. as for the nursery, she just started in october and hence its still early for the staff to notice any traits. when asked all seems well.

marchduck, i hope u don't mind me asking but what was your dd dx? she sounds like my girl. alas, sometimes things really bother her other times she doesn't bat an eye-lid and i got the impression from the woman that assessed her that regardless of her traits, that she wasn't 'bad' enough to get any further assessments, apart from SALT. so i'm really happy 4 u that your dd has a dx and it will help her tremendously.

mariammama Fri 30-Nov-12 20:07:24

You could ask for OT assessment as well. They're generally observant, good at grasping the issues and full of common sense.

frizzcat Fri 30-Nov-12 21:44:00

Des - did you see Sian Morgan

ilikemysleep Fri 30-Nov-12 23:07:34

I would say that the core difficulty, obviously, has to be in her social understanding and social interaction skills development. All those other things are behaviours, and they can and do all appear in children who are not autistic. About 20% of children who are toddler age have sound sensitivity to hand dryers or hoovers or whatever, but not all will be autistic. Lining up objects is also quite common, but does she let you move her line? Join in with lining? Of course this doesn't mean that your dd is not on the spectrum. Of more concern is echoed language and any regression should always be checked out. I haven't read any of your other threads so my apologies for that, but what is her social interaction like? Does she greet you spontaneously? Share attention? Play with small world toys appropriately?

I agree with keeping a diary, noting her social interactions. Hope you get someone to listen to you and complete a full assessment soon. It does sound like there is enough to justify your concern.

CatchingMockingbirds Fri 30-Nov-12 23:14:56

My son can sometimes cope with the hoover, other times he screams the place down. He goes through phases of lining things up too, we'll have days (weeks even) of no lining up, then shoes, bowls, toys etc will be lined up, and when he was you her he would only toe walk with shoes off, not with shoes on as, like you say, I think he found it difficult. He's already had his ASD dx.

marchduck Fri 30-Nov-12 23:26:02

Desprodad, she has ASD.The proffs said it is difficult to pin point exactly the extent at this time, but they think probably moderate.
Her difficulties are social interaction and communication. So far she's not showing any difficult routine behaviours, but she has has some ritualised/narrow interests. The reason she came into the radar for assessment in the first place was her very severe speech and language delay. It sounds like your DD has more advanced speech than my DD. From what I have read, girls with social/communication difficulties, who have borderline (or slightly less than) adequate speech and who don't often exhibit challenging behaviours can often go through the early years setting without detection, as girls present differently.
I have read that many of the posters on here who have high functioning DDs recommend Tony Attwood's (i think) work - might be worth a look.
Keep posting - everything that has helped me with my DD I have learned from here. Give me a shout anytime.
PS - it took my DH, who has always been fantastic with DD, some time to disengage from the notion that he could somehow fix it.

marchduck Fri 30-Nov-12 23:36:00

Desprodad, Sorry- I don't think the last line of my post reads well at all. I'm not meaning at all that you are trying to fix your DD - just that my DH always tries to fix everything (DIY, often unsuccessfully)

desprodad Sat 01-Dec-12 01:34:51

frizzcat it was a woman called oo.

how do u go about getting a OT assessment when the woman who assessed her has closed her file? i know girls present themselves differently, however i felt the woman that assessed her didn't c this (hope that makes sense).

my girl use to go up to any1 in the street and say hello. now she has become shy when meeting new people but will say hello and good-bye when asked. in fact she will do most things that she has been asked to do and when she babbles (occasionally) and i say speak properly other wises i cannot listen to u, she does (most of the time).

not sure what her interactions with her peers are like, but she does talk about what she does at nursery and with whom and that these girls r her best friends. sometimes not sure how much to believe because b4 starting nursery she would say things that i knew weren't true. sometimes she would take the theme from what happened to her older sibling. she has planned her birthday party and told me who she wants to invite and the theme is princesses, of course.

my dd has just recently finished her 1st ever course of antibiotics. now, the babbling started a few wks into nursery as did her antibiotics. a connection or coincidence?

thanks every1 for your comments - i do feel much better after i visit this site, especially since i am at odds with my partner.

ilikemysleep Sat 01-Dec-12 08:06:47

I really empathise with being at odds with your partner. I was the same. I saw signs of aspergers from about 3.5 but didn't get partner to agree to assessment until the weekend he turned 9. As it happened this was just as his difficulties in school became more obvious. It was a rough few years in our marriage, He was at first insistent that he was fine, and then gradually recognised that he had issues, but couldn't see the benefit of a diagnosis. As soon as he was diagnosed, however, something in their relationship improved....I think in part my partner stopped being to harsh, and our son stopped being so stressed.
However I think it maybe puts profs in a hard spot, if both parents are not in agreement about assessment?

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