Could this be ASD? Worried about 4yo DD

[Worryingmama]

Hi all. First ever post but long time reader!

I’m a bit worried about our 4 year old DD. She is summer born and has just started school. We are wondering whether her current behaviours are just anxiety - or could suggest ASD or similar.

She has always been “quirky” - some repetitive behaviour with repeating certain words or movements at random. But would come and go and always seemed like relatively normal development. Some sensory things - she likes tight hugs and sometimes presses a lot into my and my partner’s face (we have to tell her to stop). Speech on the slower side (and we still struggle to get much out of her about preschool/ school) but definitely within the range of her peers. These things have come and gone throughout her early years. She is shy but sociable, lots of friends, likes to be around people, will sometimes initiate play as well as follow, can do imaginative play alone and with friends, affectionate, understands emotions and facial expressions match emotions, understands jokes, great sleeper and eater, no issues with changes in routine or location (until school!)

But some of her quirky behaviour has recently become more pronounced/ is escalating - e.g.

• Getting fixed on the word “booby” and saying it at random moments. And generally speaking in slight gobbledegook at times.
• Pulling the same strange expression with her mouth at random moments.
• Completely obsessed by her baby brother’s hands. Wants to hold them, kiss them constantly - we feel it’s actually interrupting her relationship with him as she is so obsessed by it.
• Fixed on the same imaginary game (making a “boat” with cushions and setting out where each of us will sleep in it). Wants to do this multiple times every single day. She will and can play other games (imaginary and otherwise) but always comes back to this.
• Organising - putting all her little toys, papers, trinkets on her desk and floor at night time. There isn’t a particular order but she does have a real compulsion to have to lay it all out.
• We’ve spoken to her teacher who says she’s very quiet in group/ floor time but plays with the children she knows.

We’re worrying about whether these behaviours could signal mild ASD and therefore we should be trying to get her referred or whether they are within the range of normal strange young child behaviour - especially when going through a big transition like school.

Sorry for the mammoth post. Thoughts, experiences etc greatly appreciated!

I think it’s too early to be making any assumptions. School is a big leap and its normal for children to want to play familiar games at this time and to do things they have complete control of eg laying out toys as a reaction to having to be constrained during the day.

Is there a parents evening soon? If not then wait a couple of weeks, see how things are and then svante your concerns with the teacher.

I would say before you head further down the path of referrals or asking for advice that you cannot have mild ASD. You can be autistic or not autistic.
And it’s not too early to spot signs as children are diagnosed before they start school.
I would say that you should be talking to someone who is educated in Autism, not the teacher necessarily so a community paediatrician and you could ask to see a speech and language therapist- they often do a group session and then a short assessment to identify problems.
Girls mask autism very well and this often happens in the school setting but then you often see the Coca Cola effect of this when coming home - so just she come out having meltdowns, screaming, being upset over everything, letting everything out?
Lining things up is On the “classic” List of signs but then you say she is great at emotions so I’m thinking she just likes sorting her stuff?
Perhaps head to the gp for a chat and for the speech referral as they’ll also Often spot other signs 😊

Quite a few of the things you describe sound more like OCD to be honest - have you tried asking her why she needs to do them?

Sorry love but as someone with two children with ASD it sounds like you just have a wonderful creative child. The things you describe seem more like the stereotypes that people make :)

I’m not sure - realistically it could be anything, but sounds to me (if it is related to school starting) like a bit of anxiety driven compulsive behaviour?

My son is autistic but he didn’t lay things out or anything like that. When we used to go to a group meet up with some other mums and autistic children every child had utterly different behaviours.

I will say my 5yo (who isn’t autistic) is also a lover of the repetitive game. She gets all her Barbies and animals out ‘sets up’ the dolls house, then basically adheres to one of 3/4 scripts eg Barbie buys a puppy. I think when they’re tired from school it’s a way for them to control something.

I also have a 4yo who's just started reception and I've also been wondering whether he might have ASD over the last few months.

I do think finishing nursery/preschool and starting school is a big transition that some children struggle with more than others, and perhaps if a child's ASD is less obvious while they have a familiar routine, it becomes more obvious when they're subjected to the stress of a big transition like that. It's my hypothesis anyway, I don't know if it's right!

I made an appointment with the GP, and before the appointment, I read through the Nice guidelines table of features suggesting possible autism:
www.nice.org.uk/guidance/cg128/chapter/appendix-features-suggesting-possible-autism#appendix-features-suggesting-possible-autism
I told the GP my main concerns including the things from the list that DC does. I was pleasantly surprised to find that the GP took me seriously and referred us (however, the referral was rejected, but that's another story!)

It may or may not be relevant to your DD, but I found that PDA seems to fit my DC:
www.pdasociety.org.uk/what-is-pda-menu/identifying-pda/

From what I've read so far, I get the impression that if your child is getting on ok at school and the teachers have no concerns, you're very unlikely to get an assessment on the NHS. So we are waiting to see how DC gets on at school and may consider a private assessment.

It could be ASD and if you are concerned, its better to get the ball rolling sooner than later.

I have an ASD DD and I think your DD sounds like a lovely little girl trying to make sense of big changes in her world in a typical 4yo way.

Your post looks like you read the ASD lists and tried to find ways that she fits, rather than puzzling over things she does and ASD being the answer.

I didn't want to read & run and I know it may not be helpful to you because I have been in your position and I wouldn't listen to ANYBODY but I'd like to share my experience with you.

I was convinced that DD was on the autistic spectrum, she did lots of the things you mention with the repetitive games, behaviours, delayed speech (hers was echolalic), sensory issues. When she was 3 years old I had a parents evening when she was in nursery and the teacher and the teacher mentioned some things and I was just like a dog with a bone from that point on.

I read article upon article, scoured the internet for hours. I got a referral to a paediatrician from the GP but the wait was 18 months so I went private, I spent thousands with a private therapy company to do screenings, play therapy sessions etc but they never actually diagnosed with anything. Eventually time came round for the NHS paediatrician and again he couldn't diagnose her with anything.

Two years later she started school at 5 (also summer born but I delayed her until CSA) and before she was halfway through reception it all just stopped. When I think of the money I spent (almost £10k) and the years I wasted worrying I wish I had just accepted her as she was and given her a bit more time before I pursued anything. I realise now why they don't usually give a diagnosis until they're nearer to seven.

She's just turned 8 and is in year 3 now and she is a model pupil and the most amazing kid.

Maybe, maybe not. For me, I didn’t really spot that my child has ASD, his diagnosis (in y1) was a total shock to me. But looking back it all sort of fit.

That said, if you do have an instinct that she’s in some way neurodiverse, you’re probably not wrong. I sort of knew my child was different, but didn’t really anticipate that whatever he had had a label. We had speech therapy for a stammer and other bits and bobs in preschool.

In my area diagnosis before 5 3/4 has a much shorter waiting list than after that age, so might be worth getting that ball rolling if that’s what you want to do.

Nobody on here can tell you one way or another, but some of the behaviour about being ‘stuck in a loop’ sounds familiar to me.

As a mother of 2 ASD DD who present completely differently to each other, this doesn't to me sound like ASD. Your DD sounds too social, but as a PP mentioned, there is also PDA, where they do present in a more social way. Your DD sounds anxious due to the start of school & is displaying some OCD type behaviours, which my eldest also did at the same age.

Most schools know F all about ASD & the NHS is hit & miss. It can take many years to get girls diagnosed because the NHS are looking at traits that are present mainly in boys. If I could rewind the clock I'd get my DD assessed privately. I suggest you do that if you can, or start saving up if you can't afford it. You'll have enough money way before your DD will be seen by the NHS. Consider ADHD too. Good luck.

Thanks so much to everyone for your responses. They are all very helpful. I agree that school is a big change and most of this behaviour is probably accounted for by that - I suppose I just worried that some long standing slightly-unusual-behaviours might suddenly be becoming more obviously not right in the transition to school.

@debbiewest0 thanks for the clarification re: there being no such thing as mild, really helpful. And no, she doesn’t seem to have meltdowns after school. She’s a bit anxious and tense afterwards and but that’s to be expected given the big changes as others have said.

@NameChange30 thanks for all the info you’ve shared. Really kind and helpful to hear from someone who has felt similarly. The PDA info is really useful but I don’t think quite fits my little girl.

@HandforthParishCouncilClerk yes I agree they sound a bit like OCD. We have talked to her about it and asked but she isn’t able to explain.

@AlexaIWillNeverSayDucking @TellerTuesday thanks for your v fair comments and insights. It is definitely possible I’m seeing something that isn’t there/ doesn’t point to ASD in the way I had thought it might.

Based on this discussion I think I’ll give my DD some more time to settle given it is such a big change in moving to school. If any concerns persist then I’ll go down the route of first chatting to the school and GP/ depending on wait a private assessment.

Thanks again.

As a parent of two autistic children, I think Debbie West has some sensible advice.

I think she does seem a bit anxious. When I suspected my DD at the beginning of year 2, I went to a meeting at an autism charity. I explained my child's presentation to the group. Their reaction gave me the confidence to always listen to my own instincts. The teachers didn't have a clue and we're insistent that neither of my children had any 'difficulties'. I wouldn't put too much weight on the teacher's opinion, they are not trained in ASD.

In your position, I would keep an eye for a few more months and see how she is. Perhaps Google some strategies to reduce anxiety. Set aside 'worry time' for your daughter to talk about or draw any worries she may have. See how you feel after Christmas.

Tanya somebody (forgotten the surname) has a list of "ASD in bright young girls". I looked at the list and my girl ticked about 80% of it. That's when I knew it was more than just me worrying.

Just remembered, it's Tania A Marshall.

www.google.com/amp/s/taniaannmarshall.wordpress.com/2013/06/22/first-signs-of-asperger-syndrome-in-young-girls-pre-school/amp/

@debbiewest0 of course she could have mild ASD, theoretically. The S stands for spectrum - and it’s a huge range! Especially for females where the criteria can be quite different. And when we know that both genes and environment matter. It’s called neurodiversity for a reason - because we are ALL diverse. Autism is one way in which we have managed to group people who share some certain diversities together, in order so that we can better explain their behaviours to ourselves. I would focus on continuing to nurture her to just be who she is and ensure that she always knows that she is loved and accepted for being her, whether that is just a bit quirky or whether you do think a formal diagnosis would help her.

The reason I suggest OCD is because I have OCD and some of the behaviours - the sofa cushion game, the need to organise before bed - are things that I did myself at about her age. For me it was the need to pack my favourite things in a bag each night in case there was a fire.

I don’t know how to tag sweetbabycheeses,
But a large part of the autistic community dislikes the terms mild and severe being used. Mild might be the way YOU experience the autistic person but inside they may be struggling away needing your help. So in a similar way to using low functioning and high functioning terms, it’s unhelpful. If I was to say my eldest daughter is high functioning or mild you may assume certain things and it doesn’t allow for her deficits and she receives less help. Similarly, If you label my youngest daughter with severe autism, you are minimising her strengths.
So yes I know what the S means living with 4 autistic people in my household. But I don’t call them mild, spicy, severe ,high or low. I also don’t call them ASD. They are autistic and all present in different ways and I nuture them all as they need.
So if the original poster is starting off on a journey I’ve been on for 21 years with male and female autistics, I was just politely asking she removes the mild.

In terms of receiving help and or a diagnosis, the waiting lists are shorter the earlier you start so there is no harm speaking to a GP. And they do not always like to wait until age 7- my youngest was diagnosed clearly at 4. All the children’s journeys will be different. And just remember that some people will just like to sort things, be tidy, have routines..... Ironically my eldest is completely messy and wouldn’t sort anything so not all autistic people like it neat as she lacks the executive function to tidy. 😊
Best of luck on the journey though

There is no such thing as "mild" ASD btw.

If you do end up going down the diagnosis route, just be aware that it won’t necessarily mean lots of additional support at school - SEND services have been cut to the bone by central government funding depletion, as has basic funding to schools.

A diagnosis will help you understand more about a child’s needs and a good school will do whatever they can with the resources that they have, but there are limits. It’s incredibly frustrating for parents and teachers.

Contrary to common belief, they do not give out diagnosis like candy.

My advice is to get a referral to a paediatrician with your current concerns. They will do an initial assessment, then keep monitoring the situation/doing relevant assessments until they can give a diagnosis or discharge your daughter.