Worried about DDs development (3.5 yo)

[ChristmasHiccups]

She refuses to potty train.
Won't walk anywhere - insists on the buggy or sling
Doesn't really like playing with other children - will occasionally approach if on her terms for dinosaur chase games but after about 10 seconds she runs away
Has an issue with noise
Has an issue with personal space - doesn't like being touched
Won't dress/undress herself
Has an encyclopaedic knowledge of dinosaur names
Knows numbers to 20 and some letters
Struggles with change in routine
Struggles with busy places.

How normal is all of the above for a 3.5 yo?

[wellintothenewyear]

Hi OP,

GReat idea to have the hearing test even though we all agree hearing probably isn't the problem.

When you go, tell the audiologist that you suspect sensitive hearing. You don't want too many loud noises.

Language issues are really varied. My kids couldn't say much but their real problem was that they didn't "get" certain things. They are both thriving now.

You will be able to use her strengths to shore up her weaknesses but sometimes you have to spend a bit of time thinking about the not so great things.

My kids' relationship with each other got them through many things, and they have great memories like your daughter, so it is nice to think of your two little girls playing together :)

[Goldmandra]

How would I go about organising one?

Your GP or health visitor can refer or give you the number to self refer if that's done in your area.

[mummytime]

Sorry but " currently she understands pretty much everything said if not too conceptual - can follow complex instructions etc, but gets flummoxed by describing emotions, dual meaning words - that sort of thing." doesn't describe someone with no problems with language.
With any language issue, they will start with the simplest thing to check, in this case hearing - can she hear or is she just good at lip reading. Does her hearing come and go?

So you might as well get that checked, just as if you kept walking into things the first thing I might suggest checking is your eyesight - regardless of how recent your last eye test was.

There are lots of names that could apply to what you describe as your DDs difficulties, and some of them have to do with the way sound is processed by the brain.

Also just because she seems to understand the steps doesn't mean she is ready for say potty training. Just as although I can explain how an internal combustion engine works, that doesn't mean I can fix a car.

You are also going to have to know when events are just going to be too much for her - and as the parent not take her to them. Two of my children couldn't cope with fireworks for a number of years, eventually they could cope. In the meantime they didn't go, or we could have tried ear defenders. This book might help.

[ChristmasHiccups]

Ah ok, I get that. How would I go about organising one?

[Goldmandra]

I'm still really not sure why we would need a hearing test though

The only reason is that the first box that needs ticking is hearing so, if she sees a paediatrician and you say her hearing is fine, they are likely to say well lets get her tested anyway just to be on the safe side. That then holds up the process.

If you get her name down for a hearing test now, the two waiting lists can run together.

Nobody is doubting your judgement. It's just that they often look at the cheapest options first which are usually parenting and hearing.

[ChristmasHiccups]

Thanks for all the advice.
I'm still really not sure why we would need a hearing test though - she was talking at 10 months, 3-4 word sentences by 18 months, and currently she understands pretty much everything said if not too conceptual - can follow complex instructions etc, but gets flummoxed by describing emotions, dual meaning words - that sort of thing. Her factual recall is excellent and after having a new book from the library and I've read it to her 3-5 times she can then recall verbatim most of it - eg the owl and the pussy cat, or Julia Donaldson books. She has definitely heard it. Language is not an issue!

She "knows" exactly what steps she needs to do to use the potty, dress, etc - just won't do them!

A prime example of her behaviour was yesterday. We went to a venue to see Santa with some friends. A venue she has been to many many times when it's quiet. The problem was there was a bouncy castle - and she freaks out over the fan noise. Wants to leave, is screaming, covering her ears. As soon as the doors close behind us on the way back out she wants to go back in as she's been looking forward to it. I reiterate behaviour expectations and go back in.
Repeat, except someone speaks to her to try to "help". Worst thing ever! She has used up so much in dealing with the noise she can't deal with anything else. And people see this as a tantrum. But it's not!

Anyway, eventually we get in, are able to stay for an hour or so with a few breaks in the hall from the fan noise, we go home, all good.

I have also left a message to chase up the HV today and will wait for them to get back to me before I go down the GP route.

[itwassolongago]

If that's the route you decide to take, may I offer another bit of practical advice?

At your GPs, don't mention potty training. Instead, say "I don't think she gets what I'm saying to her though she's had a hearing test".
That's a more useful thing for them to know.

[chocismydrug]

if the HV is not helpful then go via the GP. I did that as my HV refused to refer (claimed my DC was age approbriate - we have no a dx of severe Asd, severe speech and language delay and learning difficulties).
Don't take no for an answer. Good luck.

[BackforGood]

Please insist the HV or GP refer you for a full paediatric assessment. In our area, the pre-school can refer too. tbh, if the HV and GP continued to faff, I'd phone the CDC (Child Development Centre) myself and see if you could refer in yourself!
The number of concerns you have spoken about, are a worry, and I'm surprised that neither the pre-school nor HV have tried to be pro-active before now.

[itwassolongago]

Although I'm a bit unusual in that I declined assessment for my child, I do agree with everyone else that you need to get pretty focussed on this. (I just think each family finds its own way of dealing both with the child's issues and the systems set up to try to help us)

best of luck.

[mummytime]

If you are worried you ask/demand your GP refer's you to a paediatrician. There is enough in what you have written to get her referred. My GP is very good and they refer if parents are worried, as they aren't experts (although most of them have had kids).

[Glittery7]

I have a 6 yr old DD diagnosed with ASD last year. I'm advice is the same as many previous posters. Push for an ASD assesment.
If you're HV isn't helpful, go to your GP and ask for a referral to a community paed. Early intervention (if your girl gets needs support) is crucial.

[itwassolongago]

By the way I also suffered from well- meaning advice. I have memories of getting pessimistic lectures from a general paediatrician and a lecture on chilling out from a friend within two hours of each other. You'll harden up.

I really would visit the special needs board, there is a decade's worth of tactics to draw on.

Finding a way to make your family life work and not giving a damn is a big part of coping.

[itwassolongago]

"I don't think hearing is a problem. She hears everything even stuff I strain to hear - she will identify blackbird song from miles away and hear someone going upstairs/ my phone ringing in my bag etc when icant. She screams /cries at noises like the vacuum /lawn mower / hand dryers - which is a complete PITA!"

Unless things have changed since my day, you really must get a hearing test. This falls into the category of "advice that's applicable even over the internet" because:

1. They will not refer you to anyone who understands language processing and audio sensory defensiveness until they have eliminated hearing.
   

2 because of this, you need to show you've ticked this off.

We've just about stoppe being scared of hand-dryers. Buy ear-defenders from Peltor for Christmas, I so regret forcing DS into toilets when he was terrified, it set him back.

[Goldmandra]

Oh Christmas, that is so familiar.

So many people have criticised my parenting in a similar manner and trying to explain to people why you can't go somewhere/do something is really hard because it genuinely does sound as if you are allowing your child to run your life. They simply don't get that experiences that overwhelm your child and send them into meltdown are never going to be worthwhile.

I went on the parenting courses and discovered that I knew more about child development and the theory behind the behaviour management strategies than the people running the courses. I had long since move on from the strategies they advocated. It was pointless.

DD2 has gone from a mainstream school where the head was convinced she was simply selfish and manipulative to one with a unit where the staff really understand the reasons behind her behaviour and she is about to move to a small independent school with a great reputation for working with anxious children where the LA will pay her fees because it is accepted that she won't cope in a mainstream high school. Some people do get it but lots don't.

My SIL lectured my DH recently on how our DDs could have AS because they present so differently from her sister's son who also has it. Clearly she knows more than the raft of professionals who diagnosed them.

Try to step back from the people who criticise you and just spend time with those who understand.

Tony Attwood has written a lot about girls with AS. He describes how they can present very differently, masking their difficulties in order to fit in socially. His book The Complete Guide to Asperger's Syndrome has been my bible for a while. It can really help you understand the reasons behind the behaviour.

[ChristmasHiccups]

Thank you. I understand that ASD presents differently in girls anyway? And she is verbal and bright and happy (well happy as long as I keep our lives fairly stress free or overstimulation free for her - so no preschool , no parties, no busy shopping, not too much tv, no play dates, nowhere with hand dryers, don't expect her to potty train, don't expect her to dress/undress herself, don't expect her to wear anything other than long sleeve t shirts /fleece/ jogging bottoms ). It's abit limiting and I get accused of letting her rule the roost. But I don't see her being "naughty" just gets compleletly over whelmed!
She is happiest playing dinosaurs or copying her 1 yo sister. Complete with babbling type noises and toddler walk....
She won't walk as she hates cars passing her and people passing her - so has to be "safe" in the buggy or mei tai. People say she's being lazy and should make her walk.
She still bed shares - has a lovely bedroom but refuses to sleep there...

I could go on! But apparently it is mostly down to my parenting (or lack of)...

[Goldmandra]

I have two DDs with AS and they seem perfectly normal to most people who meet them because they mask their difficulties outside our home. Staff at both of their schools told me during their assessments that there was nothing wrong with them, I was being ridiculous and just couldn't manage their behaviour.

Lots of the things you have described are seen individually in NT children. It is the fact that there are so many all together and they have such a large impact of your lives that makes them a concern and an assessment worthwhile.

I had to learn years ago to stop worrying about people thinking I am being PFB or even PSB. I am my DDs' one true advocate in the system that is complex and, at times, confrontational. I have had to put my own sensibilities and desire to avoid conflict aside in order to ensure that their needs are met.

[ChristmasHiccups]

Thank you. I sort of knew that but also think I might be being a bit pfb? Seeing things as a problem that are normal - or that's how I was lead to believe anyway.

[Goldmandra]

Pre-schools don't have the expertise to express opinions on neurodevelopmental disorders.

You have concerns. You feel that your DD's development is significantly different from her peers.

The difficulties she has are having a negative impact on your everyday lives and her ability to access a pre-school curriculum.

Go back to your GP and ask for a referral to whoever carries out/triggers neurodevelopmental assessments in your area. This could be a developmental paediatrician, a community paediatrician or CAMHS. They should know but if they don't they can easily find out.

Don't allow anyone else to fob you off again. You are a parent with logical and reasonable concerns about her child's development. They should be listening to you.

It is really, really common for parents to be turned away by GPs several times before their child gets a diagnosis. You're far from alone in this experience. Go back and, if necessary, be very clear that you will consider a refusal to referral to be negligent.

You aren't asking anyone to diagnose your child. You are asking for her to undergo and assessment. That is perfectly reasonable given your concerns.

[ChristmasHiccups]

So do I let HV contact preschool like they said they would after the first term and chase it up with them, or go back to gp and insist/demand a referral? Who do I ask to be referred to?

[ChristmasHiccups]

I don't think hearing is a problem. She hears everything even stuff I strain to hear - she will identify blackbird song from miles away and hear someone going upstairs/ my phone ringing in my bag etc when icant. She screams /cries at noises like the vacuum /lawn mower / hand dryers - which is a complete PITA!

I have asked GP - they said speak to HV. I have spoken to HV 3 times now and they said to wait until
Preschool can give a better picture as nothing sounds particularly not age appropriate. She is now refusing to attend preschool due to anxiety.

Not sure what I can do now! She is just not progressing when all her peers are just streaking ahead- she doesn't seem to have progressed in any area in iver a year. She can't even do ride on toys, balance bikes, scooters etc and will go downstairs on her bum still! Won't hold a pen or make marks - in fact in this she has regressed because last year she loved painting and now just makes vertical streaks on the chalk. Board when copying her little sister

[XmasTimeMammariesandWine]

I disagree with poster who said answer is to watch and wait.

An assessment will cause no harm if there are no issues but lack of one will cause harm if there are issues.

So i would ask for a referral.

[itwassolongago]

Interesting about the glue ear story.... none of us have said "have a hearing test " yet which is poor form for mumsnet. You should always have a hearing test if kids don't seem to "get" stuff.

It's certain professionals' job to diagnose, other professionals' job to support and your job to make head or tail of it all.

Diagnosis is mainly about extra help/money you might get at school. it doesn't matter what she "has" or doesn't have or whether this is age-appropriate or not, anything you can do to understand better where she's at and what the next step might be is gold at this age.

best wishes.

[Goldmandra]

You definitely need to ask your GP to refer her for a neurodevelopmental assessment.

If she has ASD, she may need significant support when she starts school and you don't have a lot of time to get that in place now.

The assessment would be likely to entail an appointment on your own going through her developmental history from before birth, observations in pre-school, a SALT report, a play assessment and appointments with a community/developmental paediatrician or CAMHS psychologist. The exact format can vary depending on where you live.

At the end of it you should have a diagnosis if one is appropriate, lots of detailed information on your DD's behaviour, advice on how to manage it yourselves and advice on how she should be supported in school and pre-school if that is thought necessary.

The whole process takes a long time and it will take even longer if you need to apply for an EHC Plan for her. You need to get it going ASAP.

[Miranda33]

Totally agree. See a paediatrician. I saw one for my 2.5 year old as he was having loads of problems socially and with speech and imaginative play etc. we were worried about ASD but the paediatrician ruled it out quickly. It was really reassuring to go. They know what is a real concern and what is normal and it really helped me to go and get things put into perspective. It turns out my son had severe glue ear. Keep knocking on doors until you get answers because you are concerned for a reason but it might be something less obvious going on. All children are individuals and you are the ultimate expert on your child. If you find anything that works for them then do that. It sounds like she has sensory issues with noise and touch so a sensory checklist can be useful to you and helps you to avoid or seek certain stimulations. Try sensorysmarts.com/sensory-checklist.pdf
To get an idea of her needs. Occupational Therapists are qualified to do sensory profiles but it's not something you can get on the NHS locally to me but it should be available as it's so important for some children. I would like one for my son as he he displays quite a lot of sensory seeking behaviour such as wanting to swing, bounce and hang upside down. This is to do with the glue ear.