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?

I'm not sure if I can offer much more than advice from a parent of a DD of the same age but I saw that no one had replied so thought I'd respond!
DD was terrible at walking and we still use the buggy on occasion, I found that using buses and trains was a good way to do it bit by bit (I don't drive yet so this was more of a necessity) but she loves using them. I started off with walking to nursery (about 10min walk) and then started to turn up without the buggy. 9 times out of 10 she would rather go into town afterwards than go home, so this meant she had to walk. At first it involved a fair amount of carrying, but she knows my back is bad so I limited this more and more. It has got so much better over 6 months that you wouldn't know I had worried about it back then. It took a lot of patience and persistence but we did it slowly. DD loves dressing up and I think that is how she became interested in getting dressed as I don't always have time to help her on her 20th costume change!
The only other thing I can say we have the same is the knowing numbers to 20 and letters. DD is only just starting to be interested in tracing these where some of her peers can write their own names. DD can write X, O, L and S independently but knows the others by sight so I think this will just come with time. I'm trying not to push it as I don't think it is necessary before school. A couple of DD's peers at nursery are also not interested in potty training yet and although their parents are concerned, the nursery doesn't seem to be.
I have a friend however who's son (similar age) can read and is obsessed with planets - knows all of their sizes/details of moons etc. He also doesn't mix with his peers (they don't care about planets apparently!) and she is worried about him not potty training and that he is scared of most Disney films and they have to FFWD a lot of bits that shouldn't be scary but are to him. He is in a private school and they are not at all concerned about him. Hope that helps!

I want to point out I am not a doctor, paediatrician, health visitor, occupational therapist or child psychiatrist. However I am a primary teacher of nearly a decade and there are many pointers that indicate her being somewhere on the spectrum. Have you discussed ASD with any medical professionals? Some of these things could be age appropriate but it is about the cumulation of factors. I hope you find the answers you are looking for.

It sounds like you have lots of different worries, some of which seem quite common for her age, others perhaps less so. Could you maybe narrow it down to the most concerning ones and discuss with your health visitor? DD1 is just over 3 and can only consistently count to 20 and recognise a handful of letters too but I actually think that's age appropriate, some children will go to school not even able to do that. Like pp said there are things you could do to tackle the not wanting to walk but as long as she is physically able to walk ok I wouldn't worry too much about that either.

Changes in routine, busy places, noise etc can also be hard for many small children but things like the potty training you could probably get advice/support with so I'd start with the health visitor but she's probably still too young for it to be seen as a developmental problem :)

In terms of playing with other children, how long has she been at nursery? Are they concerned about it?

I am a SENCO at a primary school, a qualified teacher and am studying to be a dyslexia specialist teacher. My advice would be to request a referral to a paediatrician through either your doctor or health visitor. What did you HV say at her two year check? Dies she have any speech and language issues? Getting a diagnosis of ASD can take some time and children need to be seen by an SLT, paed and ed. psych to complete a joint assessment. She certainly has clear indicators. Any food issues? Sleep problems? Eye contact?

It was indeed long ago but my thriving 9 year old had all this and worse.

I wouldn't have reacted very well at that stage to being told he was "on the spectrum". Perhaps you feel ok with that. We are all different.

Whilst as others have said each one of the issues you list is normal, having lots of them at the same time is likely to create anxiety. Anxiety can reduce the number of positive learning experiences she has even as she grows out of the particular issues you describe. So you can get a bit of a vicious circle. The answer is close observation, adjusting your parenting if necessary and careful use of experts (the types and quality of services offered vary wildly, as does the level of interest in empowering parents).

At this point I'd make a working assumption that, even if her speech is good, there may be some things you say to her that just "go over her head" so you may need to strip things back, and that's a real skill you have to work on.

The things that made the most difference to my DS2 were:

1. older brother to support and help him.
2. The better books on language and development (not the ones written in order to frighten you). The good ones show you how to take the child's natural interests in abstract patterns like dinosaur names and numbers and make them something that is gradually more sociable. google Stanley Greenspan for more guidance.
3. A good state school nursery with access to the headmistress and other staff who are better trained than those in private nursery.
4. Mumsnet special needs board (particularly precious if you don't necessarily "buy" the advice available to you locally).

The one piece of advice that I can give you even without knowing her is Sod the potty training. It is not important at this stage. My paediatrician neighbour's daughter was also training aged 4. This is not your priority right now.

She sounds a bit like my DS who is now 4.6. He refused to potty train, then when he was about 3.2 or 3.3 i thought we'd just have to go for it as he was starting a pre school and they needed to be potty trained (i know they can't legally enforce this but there wasn't really the facilities for nappy changing). Then when i knew he must need to go i wanted him to sit on the potty and he kept saying no he couldn't do it, i ended up getting abit cross with him and making him sit on the potty, he did a wee and was then so happy with himself, that was a Thursday and by the Monday he was dry all day with no accidents!!

He also couldn't dress/ undress himself and wouldn't really try. It was during the last summer when he was 4 i made up start putting on his own shorts, pants etc, again i had to get abit cross with him so he'd try and then when he realised he could do it he was fine. Since starting school he's come on really well with the dressing/ undressing and now will often say he doesn't need help.

He also doesn't like walking but i think a lot of them are like that once the novelty they have when they first learn to walk wears off. I think you just not bring the pushchair then they don't have a choice. Theres no way i would be carrying a 3 year old in a sling!

He doesn't like noise either but is ok with personal space. Again he struggles with changes in routine like your DD.

He has always been really good with his numbers and letters and has an amazing memory for certain general knowledge things like your DD.

When he was younger at his first pre school they though he might be ASD but the health visitor said she thought he was bored at the pre school and i moved him to another one and he got on great. My gut feeling at the time was that he wasn't.

He started school in sept and had a shaky start but is now getting on really well although has not liked the past couple of weeks due to changes in the routine for christmas plays etc

With DS i think alot of things, especially the academic stuff comes easy to him without much effort so whenever he encounters something where he has to make abit of effort (potty training/ dressing) he won't even try. Its almost like when he things he might not be able to do something he's scared he'll fail so won't try.

Thanks for the replies. Been dealing with the vomit bug!

Preschool said she is a bit behind in jar social development but that it's not unusual at 3 to still be doing solitary or parallel play. Her vocabulary is excellent but understand in is not always there.
We have contacted the HV several times but they were not terribly helpful as everything is apparently age appropriate.
Just not taking the buggy can mean a 2 hour wait for her to move. I cracked first and carried her as I also have a baby who needed attention.

I don't know. She was an early walker and taller but the other children are just streets ahead if her now :(

She has a limited diet but healthy - will eat fruit veg eggs pasta and toast.
Eye contact with me is ok but not with strangers.
If she gets overwhelmed she just lies silently on the floor with her eyes closed

She doesn't seem to need much sleep either!

No one can diagnose her over the internet. Make an appt with the GP and ask for a referral to Paediatrics.

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.

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.

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.

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.

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

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?

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.

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.

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.

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)...

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.

"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.

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.

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.

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).