When you have one non-NT child and you have doubts about the other?

[Haworthia]

I have two children: DD(8) and DS(4).

My son has been on the waiting list for an ASD assessment since February and I know he will get a diagnosis. He’s high functioning, quite social, speech delayed (but improving) and hyperlexic. I’ve made my peace with it all, although I’ve spent the last two years in turmoil wondering “is he, isn’t he?” I’m sure lots of you know how that feels.

I’ve also made peace with the fact that I am not NT at all. Again, it’s something I’ve known for years, taken various online tests and been appalled at the result - “I’m not on the spectrum, I’m just nerdy/introverted/anxious/socially awkward/struggle with eye contact” etc. I used to think that maybe we were too quick to pathologise normal personality traits. But much more recently the penny finally dropped and I realised that it would explain SO MUCH if I was on the spectrum. It explains everything. And since realising that, it’s been quite a relief. Haven’t done anything about it, but that’s by the by.

Now onto my daughter. Call me anxious (you’d be right) but I’ve had niggles about her for a long time. Now her brother is on the autism pathway, I’m thinking again that maybe she isn’t NT either.

One thing that consistently concerns me is her inability to occupy herself. Since her first term in Reception (she’s just started year 3) her teacher flagged up that she couldn’t do free play. She’d just wander around aimlessly and wouldn’t get stuck into anything. Preschool had said similar. If an adult gave her 1-1 attention she’d happily get stuck into something, but left to her own devices, she’d do nothing. Three years later, not much has changed - left to her own devices, she’d spend all her time slumped in front of the TV. She has shelves and cupboards full of toys that never get played with. And I mean never. I have taken all manner of things to the charity shop and she’s never noticed (and before someone suggests is, yes she’s horribly spoiled by her grandparents - but this is more than about being spoiled). Each birthday/Christmas I’ll buy something and think to myself “This is the one! This is the thing she’s going to actually want to play with!” but no. She’ll happily play with it with an adult (whatever it is: a puzzle game, a jigsaw, a coding set, an arts & crafts set) but she has no desire to get anything out and entertain herself, ever.

I have never known a child like it. I get so frustrated with her sometimes, I’ll say “Right, TV off, time to go upstairs and find something to do, please!” and she’ll dissolve into self piteous tears almost straight away and tell me she doesn’t know what to play with. I’ll reel off all manner of suggestions (what about your Aquabeads, what about that puzzle game?) but once the self pity sets in, she won’t snap out of it. I mean, who has to force a child, sobbing, to get a toy out and play with it?

She’s never played with dolls or character figures or Playmobil/Duplo/Lego. Tried it... nope.

I read somewhere that an inability to play or occupy oneself is indicative of a lack of focus? So I went down the inattentive ADHD road (which, incidentally, I also score highly for ) and quite a lot rings true, I think.

She is so easily distracted. She’ll be getting changed out of her school uniform and after ten minutes she’s only half unbuttoned her cardigan. Or she’ll be wandering around half undressed for ages and I’ll remind her to finish the job. This evening she came downstairs for dinner, made it six feet away from the dining table and then got engrossed in her tablet and forgot why she was downstairs. There’s no point asking her to “get dressed, wash your face and clean your teeth” because she’ll never remember to do all three.

Massive food issues. Very small number of “safe” meals (the usual beige crap - although that doesn’t even include potatoes or most forms of bread) and extreme anxiety/tears over the mere suggestion of trying something new. I don’t bother now.

Potty training was also hell, and once we’d broken her stubborn resolve not to engage with the process (she was 3.10) we’d have to take her and the potty to all manner of (sometimes quite public) areas because she was so terrified of hand driers she wouldn’t set foot in a public toilet. On one memorable occasion we had her sitting on a potty in a busy corridor leading to the toilets at Westfield (oh the shame). Also, once, a Pizza Express car park.

I really feel like I need to take this somewhere but I don’t know who to take it to. She’s extremely bright and so school have never had any concerns, apart from that initial feedback in Reception. She much preferred the structure of Year One onwards.

I just can’t get away from this worry that there’s something going on and I’m failing her by not pursuing it, just because she’s bright and doing well at school. Who do I talk to?

She sounds very much like my DD, who has ADD!

She told me recently how when she played as a child, with her dolls, she sat them on chairs and then she was quite happy - she really struggled when she had to do imaginative play with the other two DC! We knew that, as they used to play a game of making up stories - she always found that really difficult!

She admits herself, she has all the autistic traits except the need for routine - which is lucky, as her life is chaotic! She often does not get the need for reciprocity in relationships - unless we point it out to her!

PS - I should say her sister was also not NT, but ASD was not one of her diagnoses!

DS has just been diagnosed with ASD which was a "pleasant" surprise as he's high functioning and superficially presents in a fairly normal way similar to the traits associated with girls (and then melts down at home because he's exhausted). His conversation is detailed to the point of monologuing, and while he's great in structured social activity, he gets lost in unstructured time. I've seen his classmates glaze over when he gets going because he's on another wave length to them.

I went to the GP 15m ago with a double-sided mind map of all his quirks and history. The consultant thanked me for the level of detail and examples on it and decided it had enough evidence to diagnose ASD (along with other evidence like a QB test) without referring on to psyschology. I was amazed that it was that simple to diagnose, as I thought his presentation was quite subtle.

Thanks everyone for your responses. @LightTripper thanks for the kinks especially.

@ShinyGiratina what you say about structured vs. unstructured social activity is VERY familiar to me. I also have a text document with quirks and history that keeps getting longer and longer. I keep wondering myself whether what I think of as a subtle presentation maybe isn’t, when looked at by the right people.

I’ll update when I see the specialist HV next week.

Kinks? Jeez autocorrect, why would you do that to me?

Hahaha, I did wonder what I'd posted for a minute there

I’m pissed off because it gives the impression that I type “kinks” more than I type “links”. Which I most certainly do not

Don't worry. I know the randomness of autocorrect and feel your pain...

Just updating this thread because I’ve found it so useful.

So, I finally got to have a chat with the specialist HV who was great. She was really complimentary about the way we’ve been managing life with DS and adapting to his needs and trying to lessen his upset/meltdowns (it’s so rare for a HCP to make a point of telling you you’re doing a good job) and then we got onto DD. First thing she said was “Anxiety?” (absolutely) and then asked if there were any family member with a diagnosis... or perhaps should have one. I didn’t know where to start

I explained all of her traits and she agreed that my evidence + an autistic sibling was enough for her to make a paeds referral. She’s also going to observe her at school. I was worried about this but she said she’d be so discreet that DD wouldn’t even guess she was there to observe her. Said she would expect to see a girl happily getting on with her work but would be mostly interested in how she is in the playground.

I was relieved to be taken seriously. Spoke to DH after the event and said to him “I know you don’t agree” and he said, actually, it’s not that he doesn’t agree that she has ASD traits, it’s just that he doesn’t think “a label” would be a positive thing when, basically, she can mask and mostly pass as NT. So although I think he’s being short sighted for now, it’s good that he doesn’t outright oppose any suggestion that she isn’t NT.

So that’s where we are right now.

I think I need to make some changes with my parenting though. I feel like SUCH a nag at the moment. All I do is nag (and to be honest, I defy anyone not to lose their shit when their child doesn’t do what you ask after 3, 4, 5 times of asking) but I keep thinking, do I need to cut her some slack? I obviously have to approach her brother differently when it comes to basic daily tasks (barking “Right! Shoes on! Now!” without at least ten minutes of warnings and countdowns is a recipe for disaster) so should I really get cross when I find her faffing around in her bedroom, stuff everywhere, pyjamas half on, when I’ve asked her to get ready for bed several times already? Where does wonky brain wiring end and disobedient bloody child begin?

I don’t suppose it matters either way. Expecting her to do things independently at the first (or even second and third) time of asking just gets me nowhere. I think I need to lower/change my expectations and if that means supervising her getting changed so she doesn’t get distracted and move onto something else halfway through, so be it (also, I remember being like this too ). I’m not even sure what to call it - it’s executive function, isn’t it?

I feel guilty for getting into this nag/failure cycle. I’m just so tired of having to micromanage both of my children! I really want to have an 8yo who can do some tasks by herself so I don’t have to

Ive only just read today.
Im glad they are taking it seriously and will observe her.

I had a very similar dd
7.5yo
Wont follow instructions especially getting dressed (so actually i dress her as it frustrates me)
Spoke well early
Read early
Fussy with food
Dislikes hair brushing
Did have friends in yr r but has grown away mid yr 2. Now plays with the adhd /possible asd boys.

She is more hyper too though
really struggled with starting school
Issues with behaviour when with other kids.

Overreacts
Eg losing a balloon at a party/like yours a dropped broken water bottle

However im not sure if maybe hers is medical so maybe asthma. As it was always worse after running about. If she is ill or tired again worse. But also cyclical so worse in Jan .
She is very oppositional/defiant.

However there is also the fact she is pretty bright so fits some of the excitabilities.
I dont think she was hyperlexic, she just found that particular skill easy.

I think it can be easier with boys - in our school there are a group that struggle a bit. The girls are generally well behaved and all try hard to fit in.
Dd is like a younger child more into playing with seeds etc

Hi @Awkward1 thanks for reading

Funny you should mention the playing with ADHD/ASD boys again. Since starting this thread DD has got friendly with a boy in her class who she didn’t really talk about in year 2. I think they’ve bonded over lunchtime as they’re part of a tiny minority of kids who never eat school dinners. She had a play date with him recently and, having chatted to his mum about this and that, it’s pretty clear (to me at least) that he has a whole bunch of ASD traits. So she’s collected another one

I think the best thing about playing with another ASD child is they accept each other for what they are and don't mind each other's oddities.

@Haworthia have you seen this meme going around the place? It is the best response to the "label" issue I've seen.

I’m glad you posted that @ParsnipToast because that’s pretty much what I said to DH. That I really feel like I have enough traits to get diagnosed myself, and that I’ve got over the fear of having something “wrong” with me and instead understand so much more about myself. I’ve spent over 35 years feeling like a failure and that if only I could be more sociable and less awkward and why am I always shunned by “popular” people (from the school playground as a kid to the school playground as a mother, the results are always the same). It helps to know that it’s not my fault I’m wired differently. I don’t want DD, if she is on the spectrum, to go through life feeling so bad about herself.

DD's best friend may have ADHD (her Mum does and I know she has some sensory issues). I think it's quite common for ND kids to get on even if they are quite different to each other, because they are more accepting of each other's differences.

Glad the HV took you seriously and hope you get somewhere!

I have no idea about the "asking ten times" thing. We are definitely there at age 5 and honestly I can't really see it changing. I know the school use visual prompts with some success (e.g. for getting changed for PE, getting bag packed up at the end of the day) and I have actually bought a laminator so I can make her some visual lists of e.g. morning jobs that she can tick off (not done yet ... must get on with it). I don't know if your DD would be too old for that but maybe something visual that she can tick off with smaller steps (even if a written list) might be helpful?