DD5 and the nagging feeling something else is at play here

[PoleaxedAndSome]

My lovely daughter is 5. Since she was 2 I have lost sleep at nights wondering whether her behaviour is… neurotypical. For months at a time I put this to bed, and then something happens to cause my concerns to resurface. This time it was a holiday abroad- the first in years thanks to covid. For 7 days she cried, and at times screamed with upset, over every little thing. We arrived home, and it was as though a switch flicked. She is calm, happy, pleasant. This is something that does seem to happen for her, with new places/experiences. Sometimes I say ‘she struggles a bit with change’ or ‘she doesn’t like transitions much’ if I’m talking to immediate family.

she has a number of tics. They’ve been observed by a doctor who said it was a benign tic disorder, worsened by tiredness. Things like sniffing, repeating words, running and jumping repetitively.

she can get very distressed by textures and clothing.

her sleep has been a friggin nightmare for many years.

on the other hand, she does well at school, she has made friends, she has a wonderful imagination, she plays very well with her siblings and cousins. She is calm and polite in social situations, she enjoys parties and bustle and noise and celebrations.

my mum is adamant the issue is with me and not her- she is also very opposed to doctors and diagnoses though.

i don’t even know what I’m asking tbh. Maybe - does this sound familiar to anyone? And what was the outcome?

You know your daughter. You know what you’re asking about here. You sound thoughtful and knowledgeable.

I would seek a diagnosis. If your daughter has additional needs, it will mean you’re better able to accommodate them. If she doesn’t, then the nagging doubt will be silenced.

Don’t talk to your mum about it, just do what your gut is telling you to do.

"my mum is adamant the issue is with me and not her- she is also very opposed to doctors and diagnoses though."

It's none of your mother's business, not really, and she's doing her granddaughter (and daughter) a huge disservice by dismissing your concerns.

FWIW, and I am by no means an expert, it does sound as if it would be worth pursuing an assessment for your DD. Do be warned though that the thresholds for assessment on the NHS are very high and if she appears to be doing well in school (which many children do, if they are masking) then you will need to be assertive about raising your concerns and asking for observations and support.

If you can afford to pay for a private Occupational Therapy assessment, that could be a good start.

FWIW my DS is also 5 years old and similar in many ways. We are a long way off an assessment and diagnosis but my gut feeling is that he'll get one eventually. Meanwhile the OT has been very helpful.

Speak to hv/gp and ask for a paediatrician appointment. Better to see an expert .

Autism presents very differently in girls. Girls are often much better at masking so manage better socially especially at a younger age where social demands are lower. If you are concerned can you speak to the school and ask if they have noticed anything?

A couple of other suggestions:

• look at the NICE guidelines for identifying possible autism in children, make a note of anything in your DD that seems to fit, when talking to GP, class teacher, SENDCo and other professionals it will help that you have referred to it and can give a bullet point list of examples that show why you suspect neurodiversity.


• look at the PDA Society website, I found it very helpful in the beginning when I didn't think DS seemed to be "typically" autistic... I don't know if he has PDA (or even autism) but I did find it very helpful to make the connection between anxiety and demand avoidance. Lots of the recommended strategies work brilliantly for us when everything else has failed.

I used to be a SENDCo a while back. Some of the things you've noted can be signs of autism, however some children (particularly younger ones) are very sensitive to change and texture, just like some are very shy, loud, boisterous or anxious.

If you believe she is displaying signs of autism but school don't observe this then they can atleast write a letter to support a referral for further investigations; I had to do this many times when we've not seen any signs in school but the parent is really struggling. As a PP said, pupils' behaviours in school can often be a stark contrast to at home.

If you still have concerns you're better to start the process now as the waiting lists for educational psychologist appointments are very long since COVID... 12 months or more where we are if you don't go privately. Has the school got her on their SEND register already? Or on their monitoring list for SEND? If not, get them to start this process too as they will need to evidence their interventions and support as part of the process. Pupils don't need a diagnosis to qualify for support in school and the definition of a special educational need or disability is not linked to diagnosis at all. If DD does show signs of autism she may be added to some social groups or interventions in school to help her manage this (e.g. social stories) and getting that support in place early is important.

Thank you all, for your responses. yes I do know what i’m asking. I don’t know why im
pussy footing about it, especially on an anonymous forum. I am asking, is my daughter on the autistic spectrum? And I suppose I don’t know whether - if she is-
pursuing a diagnosis is what’s best for her.

No, school and nursery have never ever suggested this. The only ‘negative’ comment which has ever been expressed- by both settings- is that she needs solitary time as much as she needs time with peers. I would say, she observes until she is fully comfortable with a situation, and only then does she join in. When she decides she likes someone she is absolutely able to
interact with them and have them in her physical and emotional space - she just doesn’t feel that way about many people. So for example, her younger sister- she will
voluntarily cuddle her, or stand near her and stroke her head/ponytail. Her best little friend, she says she ‘loves her’ and cuddles her happily.

not to drip feed- mental health is something I have struggled with over the years thanks to PTSD and I find it difficult to know what’s in my head versus what’s a real difference between her and other kids. My mum knows and uses this. My mum cares for my kids three days a week so spends almost as much time with my daughter as I do. It’s hard to explain my mum but… I was to try, she’s well intentioned but very old fashioned. She doesn’t ‘believe’ in ADHD for example.

she can get very distressed by textures and clothing.

One of my sons had that ; it was immensely difficult at the time but he grew out of it. .. somewhere after 5 before 6.

DD's sensory issue might be part of the clue. "Abroad" probably offers other unfamiliar sensory experiences; smells, sounds, tastes, heat, humidity, sun on skin. Some of which may be triggering her ?

@2bazookas thanks for sharing your experience- I can absolutely relate to it being ‘very difficult’ 🫣 and if you don’t mind me asking, was there ever any diagnosis of anything at all? Sensory processing disorder or similar? Or he simply grew out of it?

What would you gain from having a diagnosis ? She's doing well at school talking well and making friends. She's unique and you know her quirks and can help her with them I work with autistic children. Many are non verbal and will never have an independent life they face so many challenges as do their families This isn't your daughter. She sounds as though she's doing brilliantly for her age

My son has ASD and dd 7 was diagnosed recently. If your thinking about it then you need to listen to your gut.

My dd was right on the borderline for diagnosis but the problems with transitions and things not going as planned, I knew deep down.

But it as easily could be nothing. My thinking was that theres a two year wait for a diagnosis so not join the list. In reality we got outsourced from camhs and diagnosed within 6 months.

What have you got to loose joining the waiting list?

Please do not ignore your instinct. My daughter quickly learned to mask her Asd at that age and this resulted in her having a huge burnout last year at 14 years old. She can no longer attend school or deal with people or situations outside our home.

@collieresponder88 i feel like that’s not the right question for me and my situation. It doesn’t matter whether I would gain anything from a diagnosis. What concerns me is whether it would benefit my daughter. Would doors open that might assist her. Or, as a PP
said- if she is fine now but struggles
later, would I regret not doing the groundwork now to get supports in place, while the going is (mostly) ok.

I also wouldn’t say she is doing great - certainly she is not non verbal, and she doesn’t have significant needs by any stretch of the imagination. But she doesn’t find life easy. Sometimes quite the opposite, and as an observer I can see that it drains her and upsets her. She is naturally inclined to be a good wee soul, it troubles her to be in trouble. If her scream crying about a new top on her skin is bad behaviour, it needs dealt with and stamped out. If it’s a consequence of an underlying disorder, then we as the adults in the room need to support that and not get angry or punish the reaction. It’s hard to know which is the right reaction, for me at least, without knowing the full picture. If that makes sense.