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?

[Haworthia]

I should also add that I obviously know that all children, up to a certain point, have short attention spans and can be scatterbrained. That’s what my husband/mum say when I say I’m worried DD falls outside the norm.

People also told me that boys are lazy and talk late and my son would wake up one day and his speech would suddenly catch up with his peers. That didn’t happen

[fiveleftfeet]

Watching with interest as starting to have similar thoughts about DD. (DS is on the spectrum).

[fiveleftfeet]

That’s what my husband/mum say when I say I’m worried DD falls outside the norm.

That's the kind of thing teachers said to me about DS, too. I think they're trying to be nice, but it's not really very helpful is it

[Haworthia]

Glad I’m not alone @fiveleftfeet

Just remembering some other issues, may as well list them here:

Loud. Still has to be shushed and told to speak more quietly.

Interrupts/talks over people.

Fidgety - sat next to my dad watching TV last week and he said (and has said similar before) “My GOD that child does not stop moving!”

Witters on about things at length and doesn’t seem to care whether her audience is a) listening or b) understands WTF she’s on about.

[fiveleftfeet]

*Loud. Still has to be shushed and told to speak more quietly.

Interrupts/talks over people.

Fidgety

Witters on about things at length and doesn’t seem to care whether her audience is a) listening or b) understands WTF she’s on about.

Sounds just like DS

[fiveleftfeet]

My DM has ASD, also DS. I sometimes suspect DP has traits.

It skipped me though, I have inattentive ADHD instead. (Diagnosed just this year).

I need to have a think about how to articulate my concerns about DD, but my bed is calling...

[Haworthia]

Please do, I feel quite alone right now and like I can’t broach it with my husband because he’ll say I’m just paranoid and all kids are as scatty and odd as she is.

[Lackofsleepforyears]

My son was diagnosed with ASD at 6. School were not very supportive. Thye decided he was emotionally immature as he is very bright so could not be autistic. I knew very early on. His older sister was diagnosed with ADHD (more inattentive type) last year age 9. School also did not flag this up as she was doing well academically and not causing any problems. However, at home is was very clear. 6 months after her ADHD diagnoses she was also diagnosed with ASD. She presents very differently to my son and although now his ASD is far more obvious hers isn't as she insists on trying to be the same as the other girls and is desperate to fit in. I am working on her embracing her true self and sharing her differences with her peers but we are not there yet.

[fiveleftfeet]

I wonder if DD has ADHD rather than ASD, but I know I don't know much about ASD in girls.

She doesn't seem to have the concentration to follow more complicated TV programs or books. She still prefers CBeebies although most of her friends seem to think that's babyish now.

She absolutely freaks out if she does something that she needs to apologise for. I've got a thread on that here:

www.mumsnet.com/Talk/_chat/3686382-DD-FREAKS-if-shes-in-the-wrong-Something-deeper-going-on

I need to think what has caused me concern in the past. I have a terrible memory! It's just every so often she does something that makes me wonder. I haven't even articulated it to DP yet.

[Haworthia]

Oh, I saw your thread! I definitely know how it feels to watch a child have an inappropriate emotional outburst to a minor thing. She came out of school and immediately burst into tears because she’d dropped her water bottle and cracked it. She’s also freaked out when she’s left her cardigan behind... really anxious, like she’s worried she’ll never find it again.

As for apologies, she would rather die than apologise to anyone about anything TBH. It turns into a big sobbing drama about how she “just can’t” say sorry. Her brother, on the other hand, will apologise to anyone apart from the person who needs an apology

I’ve often thought that maybe it was just a manipulative thing - she’s done something wrong but, with enough sobbing and high drama, she can turn herself into the victim. Like I said earlier, she is a master of self piteous crying jags and is very prone to them. But, like you, I’ve also wondered if there’s something else going on 🤷‍♀️

[0ddsocks]

You have basically just described my daughter completely. Who has just been diagnosed with ASD.

I’m not saying your daughter has ASD, I’m no doctor. But I literally could have written exactly what you’ve written.

[BlackeyedGruesome]

ds diagnosed at 4, dd at 12.

advice: get a list together and see the Gp asap if you hav concerns. it takes ages.

[Haworthia]

Thanks everyone. You’re helping me try to get my thoughts in order.

I haven’t ruled out ASD. The food and sensory issues might point to that. It’s something I’ve always discounted because she’s always been SO social though. Advanced speech from a young age. No obvious social/communication difficulties (unlike her brother - it’s quite obvious with him). But over the summer holidays I watched her launch into an anecdote about her new Crocs to the woman in Clark’s measuring her feet () and I had this sudden jolt that maybe she’s a bit socially inappropriate sometimes? And, like I said, she will blabber on about things to people (like a game she’s playing on her tablet) with very little awareness of whether they’re interested or understand what she’s on about. When she’s driving me nuts with her constant chatter, like literally getting up and coming to find me to tell me about some nonsense she’s just watched, I’ll say “Why are you telling me this DD? It’s not interesting, I don’t care!” (I say it with a smile on my face btw, I’m not a monster. It’s just very wearing).

Thing is, ASD is on my mind constantly with my son, so I could also be hyper aware of it. I see it everywhere. And considering I’m now convinced I’m not NT, I keep thinking “It takes one to know one”

I wonder about her friendships at school too. She’s never been one of the girls, and doesn’t even talk about most of the girls in her class. Preferred the company of boys pretty much exclusively up to Year 2 when she met a couple of girls she gets on with. Plays with a couple of autistic boys quite a lot (which is ironic - I wish she’s be nicer to her own brother!). When it came to deciding who to invite to her birthday party, she just picked the same kids from last year - even though the classes have since been mixed up and I wasn’t convinced that she was particular pally with several of them. It was like she couldn’t think of anyone else.

Feedback from school has always been that she’s so kind and if anyone’s upset and needs looking after, she’s there.

I have an appointment tomorrow with the local SN support service, primarily for DS, but I’m tempted to broach the subject with them so they can signpost me in the right direction. My husband will probably think I’ve lost my mind.

[Haworthia]

I guess my only doubt is that maybe NT kids are like this? I have no barometer of “normal” whatsoever!

[SisterSistine]

I have a similar age gap to you. My youngest (boy) has an ASD diagnosis. I have always, always wondered about my eldest (girl) but school just thought she was a bit sensitive. She is 9 now and the gulf with her peers is becoming obvious. School are now noticing it too and asked if they could refer her for ASD investigations.

Have you spoken openly to the school and given all your reasons why you think? They only see a bit of her so if she masks well, whatever she is masking, they might not realise. If you do or have done that and they aren't supportive, I would seek referral elsewhere. It is so common for these things to be clustered in families.

I have wondered and worried that I now just see autism everywhere. But it does sound like there is enough going on for your daughter to warrant some investigations. What pushed it for me was my daughter reading a book about autism I got her to understand her brother and her saying "mummy this sounds like me."

[Haworthia]

I have mentioned the inattentiveness before, to her year 1 and 2 teachers, but they both didn’t think she fell outside the norm for her age. She just started Junior school now, so I suspect the expectations of behaviour will be higher and, now they’re older, they should be able to concentrate for longer. It will be interesting to see how she does.

Also, she’s a girl and she’s a high achiever with bags of confidence so I don’t suppose she’d raise many red flags compared with a boy with ASD/ADHD who behaves in a more typical, disruptive way. She may also mask brilliantly, if she even needs to.

I’ll definitely raise it again at parent’s evening. I also mentioned it in passing at the SN support service on Tuesday (DH, predictably, totally disagreed with me) and they mentioned getting in touch with the specialist HV who has been to observe DS at preschool. I have her email so I might ask a few questions.

What pushed it for me was my daughter reading a book about autism I got her to understand her brother and her saying "mummy this sounds like me."

Funny you should mention that, because I’ve just borrowed a book called “My Superhero Brain” to explain her brother’s ASD to her (mainly because I wish she would stop mocking him, calling him “stupid” and generally pressing all his buttons). Also borrowed a Tony Attwood Aspergers book and read a paragraph about school perfectionism. Thought “That’s me. That’s DD”.

[Tiedupwithstrings]

Wow, this sounds very familiar. I have a ds who is diagnosed with ASD, I suspect I may be too, but not on path to diagnosis yet (it's on the to do list!) and I can see signs in my daughter, but- as I think is very common- DH not at all convinced and she is, if anything, as good as gold at school so she could well go under the radar.

She has that classic black and white thinking too- if she doesn't do something exactly right then it's "wrong" and she gets super upset. She does seem very sensitive too - emotionally but also to sounds in particular.

I also have a cousin who has only just been diagnosed as a teenager and was off school for a year due to anxiety and a niece who has been in the referral process for a year so far (no assessment on the horizon yet).

So I think that if you have concerns then you're right to take it further as it can take such a long time to get anywhere and the teenage years are generally much harder. Is it worth keeping a behaviour log or just jotting down anything that stands out? The more evidence you have the better as far as CAMHS go I think- sorry if you already know all this! I know I can hyper analyse things too and question my judgement but you probably know more about ASD and your daughter than most!!

Now I need to follow my own advice and start a journal for my daughter!

[123bananas]

My dd is 10 and presents in some ways like your DD (anxiety, playing with boys at school including boys with ASD, talking at people often without noticing whether they are listening and about special interests, has special interests that she will research/spend a lot of time on, very scatty and cannot follow three step instructions). She is on the waiting list to be assessed, referred by school. Younger brother is 5 diagnosed with ASD. You can make a list of your concerns and go via your GP, but I would speak to school first because they might not be looking at her behaviour much if she is academic and has a few friends. If you take your list in and show them it might trigger them to look at her more closely and they might see things they haven't noticed before. Their input/opinion will likely be sought as part of the assessment along with possibly an educational psychologist. Girls present differently to boys and there is a push now to educate professionals about girls with ASD.

Limpsfield Grange School for girls with ASD has some good info and info sheets that you could print off for the school:

limpsfieldgrange.co.uk/autism/asd-tools/

[Haworthia]

Hi @Tiedupwithstrings I’ve actually been keeping a log on my phone of all the behaviours and traits as I think of them. It’s quite long now.

Thanks for the link @123bananas I’ll take a look. Will also mention it to her teacher at parents evening in early Nov. As she’s only just started junior school I doubt they’ll have much to say as they don’t know her, so I won’t expect much feedback from them right now.

[Haworthia]

Just bumping this thread to update, and hoping that people who’ve posted here before will see it.

I emailed the specialist HV for the area who works with families awaiting diagnosis. Primarily I wanted to talk about what to expect when we finally get called in for the ADOS assessment for DS, but I also mentioned I had concerns about DD so can I broach that with her. She’s coming for a home visit in a couple of weeks.

Parents evening for DD went well. She’s high achieving, as expected, but one comment that made me go “Uh oh!” was “she’s so confident, especially talking to adults, she’s like an adult in a year 3 child’s body!”

I’m worried about friendships. She was quite friendly with two girls in year 2 but that seems to have fizzled out. I owed one of these girls a play date and had been putting it off for a while (she’s really quite badly behaved!) but felt guilty, like my own antisocial tendencies were impacting upon DD’s friendships. Anyway, when I suggested inviting X over for a play date, DD said “Oh, well X has been saying that she doesn’t want to come to my house again”.

My heart sank! On the one hand, I don’t want to invite a child over who refuses every single snack I offer, jumps all over the sofas despite being told not to constantly and is generally pretty obnoxious, I still feel terrible for DD. I had a hunch that they’d suddenly grown apart, because they no longer come out of school together (and the girl’s mum no longer badgered me about play dates)

I’m starting to think that, despite always believing that she couldn’t be autistic because she’s always been so confident and social with adults, I think the problem lies with her peers. I don’t think she fits in. I don’t think her peers relate to her.

I don’t even know whether my expectations of close, solid friendships at her age are too high. Maybe they are?

[LightTripper]

My daughter is autistic and what you say resonates quite a lot with me (though DD is only 5 so friendships are still simpler for her). I've also wondered about myself which makes it hard to gauge what is "normal". There are all kinds of things I assumed were normal or all kids did which it turns out are not. Quite a few of these I found out during DD's assessment process.

There are a lot of overlaps between ASD and ADHD. I suspect in the end all this neurodiversity will either come under one umbrella or fracture into more specific needs and sensitivities (or both! Hopefully both).

There are a couple of really good books on autistic girls that you might find helpful.
www.amazon.co.uk/Girls-Autism-Educational-Personal-Perspectives/dp/0815377266/ref=sr_1_1?keywords=girls%20autism&qid=1574936504&sr=8-1&tag=mumsnet&ascsubtag=mnforum-21

www.amazon.co.uk/Spectrum-Women-Walking-Beat-Autism/dp/1785924346/ref=sr_1_1?keywords=spectrum%20women&qid=1574936400&sr=8-1&tag=mumsnet&ascsubtag=mnforum-21

I'm looking forward to this one too but it's not out until March:
www.amazon.co.uk/Spectrum-Girls-Survival-Guide-Autistic-ebook/dp/B07ZDNKSQR/ref=sr_1_11?keywords=spectrum%20women&qid=1574936415&sr=8-11&tag=mumsnet&ascsubtag=mnforum-21

There are also some great autistic women YouTubers. Mostly adult diagnosed, as your DD obviously wouldn't have been diagnosed until adulthood if she'd been born 20 years ago (or even 10 years ago, probably). You might like to try Purple Ella (particularly her "Autism in Company" series with Ros), Invisible i, Yo Samdy Sam, Agony Autie, Sew Many Books. Several of them have videos about friendships at school, how they found growing up, etc.

DD's school is finding visual prompts are useful for the scattiness (e.g. she has a picture card with steps to getting her things together at the end of the day, and another one for getting changed for PE). I've just bought a laminator so I can do some for home so hopefully we can leave the house without dozens of prompts/reminders/nags for shoes, coat, toilet, etc!

Finding it easier to socialise/communicate with adults than peers is a very common trait (true of DD, true of me in my time, and I guess also now ). Adults are much more predictable and play by the rules more, will indulge children's quirks in a way their peers won't, etc. so it makes sense.

Felicity Sedgewick is doing really good research into autistic girls'/womens' experience of friendships that you might find useful. Some of it is quite tough but then you have to remember the girls and women she is talking to are often undiagnosed and generally not very well supported, which can't have helped. I'm hopeful we can do a lot better for the next generation (as is she!):
network.autism.org.uk/good-practice/evidence-base/autistic-female-friendships

She also has a chapter in the first book I linked to above.

[Ellie56]

I think you have described enough concerns to start raising them with the professionals OP.

I don't have girls myself but having worked in schools, girls tend to start forming friendships very early on and certainly long before the age of 8.