worried about 3.5yr old Dd need for lists/routine, things to be the same and few other 'quirks'

[InsaneDuck]

Hi, my 3yr old Dd is obsessed with lists, routines and the need for everything to stay the same. I have an appointment with hv on Monday, just wondered what other peoples thoughts are on this. Are they bad habits or something she will out grow? Or should I be concerned..
Here are the main issues im concerned about (apologies in advance if it turns into a bit of a long winded post)
She absolutely hates any form of change and would get so worked up and aggitated, whether it be a move around in furniture or even a slight change in someones appearance.
Everything we do has to have a picture list/routine for her to follow, we have a daily routine planner, and others (how to use toilet, whats happening while on a trip out to shops ect) for her otherwise again she gets so aggitated and just so worked up noone can reason with her or calm her down :-(

Few other little things also is she sees no danger in anything, one example is she still has to wear rains while out otherwise she'll just run out into the road. Also has a big dislike for 'background' noise we have worked out, like in a supermarket or school playground, she would get quite distressed in these such places unless she has a pair of ear defenders on! (We do get some weird looks from others but who cares as long as she is happy, right!?)

She is rather intelligent and loves problem solving and puzzles and could tell you anything you need to know about the weather, she loves, almost obsesses about it! She has had 'normal' develpoment in speech/motor skills (albeit she's a bit clumsy!) and the like so no concerns there. She is a lovely little girl as long as we dont change anything and have her 'lists' to hand.

I think thats everything! Tia for any advise or input.

In many ways, she sounds a lot like my DS, who has been diagnosed with Aspergers. The need for routine/ritual, agitation with unpredictable change, discomfort with noise, fondness for puzzles and particular interests. Not saying that this is necessarily what's going on with your DD, but it might be something to consider.

If this is something that you or your HV think is a possibility, you can ask for a referral if you want one. DS's diagnosis (made when he was 5, though we first raised things with HV when he was 3) has helped us work out strategies to support him, and has been beneficial with school - the NAS website has some useful stuff, and I've found Tony Attwood's books good too.

Seconding the guess at Aspergers. Me, my dad, my bro, probably my late mum, my daughter, her husband, his late father... all have/had Aspie traits, but its my aunt who makes lists. Must get her to read up on it...

Thank you for replies, I have had aspergers mention by a passer by who had kindly stopped to help defuse a laying down in middle of the road meltdown (we had crossed the road in a different place to normal, silly mummy should of known better!) The passer by had noticed the ear defenders.
I have had no concerns passed to me from her nursary group but they are aware of her list thing and do have a picture routine in place.(The noise from playground is only in morning drop off while taking my Dd1 to school, so they have not noticed this) Although she isn't the most cooperative after sessions, not sure if thats a build up frustration being let out or tiredness (or possibly both?)

My 4.11 DS sounds a little bit like this (we don't make lists - I doubt he even knows what a list is) but some of the other traits sound familiar. He cried when we told him he was having a new carpet in his bedroom. Then when we moved the furniture around in his room afterwards he got really upset and had a tantrum. He got over it relatively quickly and was fine the next day, but if things are done out of routine it can get him really worked up.

It's interesting that you've all mentioned aspergers. I just put it down to being ever so slightly OCD - something both myself and his Dad are guilty of.

I have two DDs with AS and your DD sounds very similar. I didn't realise until DD1 was much older and I wish I'd known when she was smaller.

The need for routine isn't ever going to be bad behaviour. It is a need for control in a world that makes a child quite anxious. The more I keep the routine in place and give really good advance warnings of changes, the less anxious they are and the easier they can cope with other aspects of their difficulties like sensory input (loud noises, unexpected touches, etc).

Having one deep interest is common in children with AS, as is being tired and grumpy when arriving home from school/nursery/busy social events. This is because it takes a lot of effort to cover up your stress and comply with the social rules you understand in those situations. They often vent or shut down when they get home.

Lots of professionals are still under the impression that AS can be seen very easily. That is not the case. Children with AS may still make eye contact or show physical affection, both of which are used inappropriately to dismiss the possibility of AS.

Google Tony Attwood and see if you can get a copy of one of his books. The Complete Guide to Asperger's Syndrome is excellent. Read about it before you see the HV and, if you think it describes your DD, ask for a referral for a neurodevelopmental assessment.

A bit of an update, saw hv this morn and she said I was right in bringing up her issues, and has flagged up a possibility of dd being somewhere on autistic spectrum, so wants me to fill in a questionnaire and hv is going to drop into dd nursery to see how she is in a different setting.

Dd is so obsessed about routine/list that if we don't have one in place its almost like the end of the world :-/ (i had forgot to redo her daily routine few days ago with being busy with my other dc and my god didn't we know about it!)
Dd thing with not liking change is quite bad, worse then just a tantrum for a while, she gets really quite distressed and can last for days or untill the 'change' has been put back.

I have been advised to have a read up about it to see if there is any other 'querks' she has that I just have not noticed.

Not all those with Asperger's are list makers, as someone from an aspie family, only one of us is a list maker, the rest are too disorganised, and wouldn't even be able to find a pen or paper to start the list in the first place. However, I do see several red flags in your daughter and would be pushing for assessment

So, I've done the questionnaire was asked to do and dd has scored higher then hv would like, hv then called the nursary and although they have no concerns and described dd as 'a busy little bee who likes control' hv still wants to drop into a session, possibly next week, to see what dd is like there.

I been told that if all is OK at nursary then would be no need for further assessment, if this is the case, should I insist on further investigation given dd current querks or leave it to see where it goes (and hope fingers crossed she out grows them)? This is all new to me and I'm not sure on where I stand so any input would be fabulous.

I would insist that she's followed up by a developmental paediatrician tbh. The nursery says she's fine but like control. What happens when things are beyond her control? How does she relate to other child?
Not sure you should rely on an assessment by a HV either tbh. Yours sounds lovely but that's not the same as being qualified to diagnose.

Yes I think I may do now, obviously depending on the outcome from the nursary visit first. I'm not to sure how dd copes at nursary in that situation, I must ask.
My hv is a lovely very understanding lady and has helped get to the bottom of a few previous problems (dd is also supersensitive to wheat, gluten and barley) so I'm sure she wouldn't mind me pushing for referral if need be.
Thank you all for your help x

I been told that if all is OK at nursary then would be no need for further assessment

That statement alone clearly indicates how unqualified the HV is to make or discount an Autism diagnosis.

It is very common for children, especially girls, with high function autism to mask their difficulties in Early Years settings and school. When my DD2 was being assessed, the description from her pre-school manager was that they hadn't had any concerns but she had preferred her own company and quite liked to be in control when interacting with her peers. This was seen as significant by the team who diagnosed her. She still masks her difficulties in school.

I would strongly advise you to request a referral to CAMHS or a developmental paed, whoever diagnoses in your area, regardless of the outcome of the HV's observation in nursery.

If you don't take this further now, she may struggle significantly when she starts school or as she progresses through school. You would then have to start the diagnostic process and the assessment process for an EHC Plan. This can easily take a year, perhaps more if one has to follow the other or you have to appeal, and during that time she may be left with inadequate support or, like my DD1, be unable to attend school.

If she receives a diagnosis now, she is more likely to receive support in school at the time and the level that she needs it.

My dd1 was a bit like that at that age (obsessed with routines, hating change, she also found eye contact very uncomfortable (not sure if this is an issue with your dd)). I was very aware of the possibility of Aspergers as there's a lot of it around in my family, but it never seemed quite bad enough to warrant further investigation. It may be some reassurance to you to hear that she's now much less obviously odd and is coping fine at school (age 7). In fact, school suits her rather well, with the structured timetable and adult led routines. She is still a bit Aspergers-y in some ways, but it's mild enough that I doubt it'll cause her too many problems. It sounds to me as though you're doing all the right things to help support your dd - and if you can get a referral, you might as well take it.

I didn't think our dc was able to hide such feelings at such a young age?, but I'm now wondering if she does mask the feelings and that is why she is more aggitated and uncooperative on the days that she goes? Today she looked so withdrawn when i picked her up and was in such a fluster all afternoon, that it took an age to settle her and get her back on track. If that makes any sense!?
I would not want her to struggle all because of my doing so yes I will push for referral.
I have just ran out of ideas on how else I can help dd with her ways, hence bringing it up with hv to begin with.
Also, what can having a diagnosis, if anything if found, do to help my dd?

Insist on Paed appointment and don't take no for an answer. It's better to be over-cautious now and wrong than fobbed off and right later on. As someone with a disabled child who has been through the system extensively although not for autism I can assure you that only you will be your child's best advocate, no matter how helpful individual HCPs might be.

Glad your dd is doing well now januarysnowdrop, always good to hear a different outcome to things :-)

A diagnosis ( if she needs one) will prove she has X (whatever x is). This may entitle her to extra support in school if she needs it, it will mean you are more likely to be believed if you observe problems that the school can't see (like a child who 'copes' through the day then melts down at home). It will also give you, and later your daughter, an explanation of why she finds certain things difficult and (again depending on the diagnosis) why she is 'different'.

I can see now how that would help, if anything is 'wrong', mainly more so with certain family members at the moment, who are very much dismissive of her ways and are not at all supportive or helpfull one tiny bit :-( (dd is seen to just be a "brat" in their eyes)