Deep breath - can I ask for some support and advice please (ASD)

[Lougle]

OK, this may ramble a little.

So, you know I have always thought that DD1 was a little 'spectrummy' and the Paed always says no she isn't, and I always feel that she just masks with superficial social veneers?

And you know that I have a question mark over DD2 regarding HFA? Silly things on their own, but added up, makes me think. Things like refusing her favourite colour cutlery because it isn't her turn, even though it's being offered to her and crying because I've broken the rule.

DD3 is now 3.3, and we are realising that we are experiencing so many 'firsts' with her. Imaginative play, like real imaginative play. Lying, proper lying. Picking up on the nuances of jokes and following suit, rather than just parroting what has been done. Obsession with poo..totally normal, but something that DD3 has initiated and now DD2 and DD1 are following her lead, rather than the other way round.

DD2 is very loud...she doesn't seem to be able to modulate her voice according to the situation. Even her whisper is loud, IYSWIM. She is very matter of fact, and can't accept me telling her to just do something and I'll explain later. She got devestatingly upset because my Mum told her that my Brother (who she doesn't see often) is 'in our family' because he doesn't live with us.

Soooooo

DH.

Before I start, he is the most lovely man. Truly. Even some of his most difficult episodes are in no way malicious. But over time, I've noticed that he 'takes after his Dad' more. His Dad is seen as quite a 'difficult' man, but tbh, I've suspected that he is undiagnosed ASD.

If I tell you a few incidents, can you tell me what you think?

So:

When we were younger, just friends, I was at his house and he offered me lunch. He got out a mouldy loaf and started cutting. I said 'err it's mouldy' and he said 'Mum doesn't like food to be wasted'. I declined . There was a fresh loaf, and his Mum got really very cross because of course she didn't expect him to eat bad food.

More recently, I felt very unwell. I had a migraine, but realised that I couldn't see well at all, and couldn't feel my body well. So I managed to phone DH who was in bed, and tell him. I asked him to come down and help me. He thought 'I wanted the light turned on' so that I could see. I stumbled up the stairs, then collapsed on the floor in the hall. I apparently mumbled 'just give me a pillow I'll be fine (I have no real recollection after stumbling upstairs) and so he did and went to bed. In the early hours I woke to find myself in bed, fully clothed. When we talked about it, he said I'd said I was fine, so he thought I was, even though it was clear that this was really very odd behaviour.

He is very literal, often has to have jokes explained to him, very dispassionate about many things. We have been part of an online group for almost 3 years, and there was some in-fighting and a split. When we talked about it, I said that he didn't seem at all bothered and he said 'well it's not as if I made a relationship with them like you did...

He's verry verry organised within his little sphere. If something is part of his routine, it gets done without fail. But if something is new, it just won't get done.

He doesn't really pick up on atmosphere. In fact, once, when it seemed he would miss a deadline, one of his bosses asked him to 'at least fake a panic'.

A few weeks ago, I came in and DH was getting the children ready for bed. I heard crying. It went on. It turns out that DD2 had tripped and banged her head/cheek on the door frame. When I went up, DH was continuing to brush teeth with the other children. He said that he was 'finishing this job' before he dealt with DD2. I went a bit mad, and later, when we talked about it, he admitted that he was just focussed on getting their teeth brushed, that he 'knew something was missing' but couldn't work out what He felt remorse when I pointed out that he neglected DD2's needs by ignoring her, but he genuinely hadn't realised that he needed to stop the 'job' to deal with her.

The thing is he really loves the children, he loves me, he's not an unkind man.

Do you think I'm right to be wondering if he has ASD himself?

If so...what on earth can I do? Do adults even get diagnosed, and if he were to be, would it make a difference?

Lougle, I'd say he sounds very much like he's on the spectrum. I don't think it's going to make any difference to him to get a DX unless he wants one. It doesn't sound like it's badly affected his life, he's married with kids and a job. It might make you more sympathetic to his quirks but you know they aren't his fault, anyway. It's like my DS3, definitely quirky but perfectly happy as he is. If your DH isn't happy...

I think he does find life difficult at times. Certainly, I have to deal with all financial stuff, organising stuff, DD1's stuff, in fact all stuff that matters in any way.

The way he dealt with me collapsing was a big shock. I've realised that I have to give him water-tight 'procedure manuals' regarding the girls, etc.

Such as 'I'm popping out. If the girls are in the paddling pool, you need to be watching them, at all times, near them.' because if I didn't, he'd think I mean to keep half-an-eye if he remembers. Or that they'll be fine, and I'm fussy. Or that as long as he can hear them vaguely it's ok....

I'd agree with Ellen, he does sound like he is on the spectrum, but it depends how much it bothers him as to whether a dx will help.

My mum's a clinical psych and has referred adults for dx in the past when she felt it was necessary for their mental wellbeing. In each case the dx came as a huge relief and helped the clients to make sense of their lives in a way they had never been able to previously.

On the strange reaction to your migraine, believe it or not even nt people can behave like that sometimes. When I was early in pg with dd I collapsed at home while my mum was visiting. My temp shot up, I had excruciating (and I mean excruciating) pain across my midsection, became delirious, stripping off and lying on the quarry tiles in the back porch in a frenzied attempt to cool down and passing out. What did my mum do? Call the GP - no, call NHS direct - nope, call an ambulance - nope. She stepped over me because I was lying in the way of the toilet room door and she needed to go. So she actually stepped over me, went to the toilet and then stepped over me again on her way back to the living room! When I eventually came to and crawled to the sofa, she just sat there in the rocking chair silently. Eventually snapping out of it and saying that I seemed a bit better now so she'd just get me a blanket and let me sleep. I assume she was in shock, as that's the only logical explanation for her behaviour. Turns out it was a gallstone that was trapped in the bile duct, if it hadn't freed itself it or had reached the pancreas it could have been really serious.

Dh has also behaved oddly when I've been ill. When I had what he thought was a stroke last year, he decided to video it (ok useful evidence for my neuro) but he completely neglected to call anyone medical for help! Mind you, I am coming to realise that he is more spectrummy than I had ever considered and ASD is clearly traceable through his paternal family line.

Thank you for your kind replies...I'll mull it all over

Lougle, I'd forgotten your dd1 wasn't officially on the spectrum. Cos from your posts, she sounds like you need and use the asd-friendly approaches. If Dd2 ends up at Cambridge, she can join the the 'broader phenotype' kids who keep Simon Baron-Cohen busy!

Thanks Mariammariam, we tend to go with the idea that the label might find her, but until then we'll just do what works.

Another example of DD2:

I was cross, really cross. The girls were not settling for bed. I shouted at them to 'just close their eyes and go to sleep, and I don't want to hear another peep.'

DD2 very earnestly said to me 'Mummy, I want to be a good girl, but I can't close my eyes. I can only close my one eye because the other one is already shut.' (she had an eye infection so one eye was swollen and closed)

Today, she got her very first invite to play at a schoolfriend's house. Very impromptu, lives up the road. When I saw her, I said 'what's this I hear about you visiting x? Why did you go there? ' She said 'because her brother knocked the door'. So I tried to coax a better answer and asked about why she was visiting this girl (trying to encourage her that x liked her and wanted her to play) and she said 'because her brother walkdid me up to her house'.

She couldn't understand that the question was a qualitative one rather than a request for a fact pattern.

DD1's support worker was with me, and she said it definitely seems like there's 'a connection missing there'.

She also noted that she was really surprised to see a change in DD2 when she met a new child. She withdrew and started sucking her hand, despite the girl being very friendly and engaging (but not overpowering).

I don't know....it just doesn't feel 'right'.

I'd push for dd2 to be checked, but maybe not dh...

Only cos one at a time in order of priority!

I have no intention to leave DH. He is a wonderful man except for when he leaves me to die and goes to sleep

Tbh, I have been taken by surprise. I always thought DD2 was my NT one. I noticed things like her rage when she couldn't put a piece of material over her toy doll exactly straight. I noticed that she got hysterical because I made her wear shorts with two buttons and she was 3!! I've noticed that she hasn't been invited to a single party all year, and I know children have had them.

But she has finished her first year of school, is still four years old and scored 104/117 on the EYFS profile, which is pretty amazing, IMO.

I suspect that her young age relative to the year is making teachers write off her quirks as 'young'.

But then I see her along side DD3. And suddenly I see for the first time imaginative play (from DD3) that I've never seen in DD2. I always thought that was because she didn't have DD1's example to follow, but then if that's the case, how has DD3 managed?

Justa, how I wish you were still in the UK. You've met my girls, and you'd be able to talk to DD2 and see if you see what I see.

I feel like I'm treading a line.

I don't want to jump on any oddity because of my experience with DD1. At the same time, I would be horrified to look back and see that I allowed DD2 to struggle just because her needs weren't as obvious as DD1's. She already easily melts into the background alongside the other two.

Then I get to thinking that if DD3 is my only truly NT one, then I need to be careful that she is allowed to grow up 'normally' too.

Flipping jipping. No one told me parenting would be like this.

I think if DD2 was my only child, I wouldn't know half as much about ASD as I do and possibly I wouldn't be too worried at home because I could do all the accomodating needs with her as my sole focus.

I think I would be wondering if she would cope in Yr1, because although she's done fantastically in YrR, it's been very direct. She has largely had free choices, and her responses to teaching have been very 'direct' also. For example, at her first Parent-teacher consultation, her teacher said 'DD2 is so easy to assess. I teach the children about repeating patterns, and DD2 will go away, build something and say 'Look, Mrs X, it's a repeating pattern.' Fantastic, we think....but it niggles a bit, because what about when she has to do self-directed things?

It's great to be asked to identify my concerns, because I've been wondering what I'm worried about myself...couldn't put my finger on it.

I'm concerned that (whilst the school is very good) they aren't noticing, perhaps the more social elements. I have been told that DD2 is fine in play times, but have witnessed myself her standing back from a group of girls, sucking her hand (something she's done since the very day she was born) looking worried and unhappy.

She once came out of school, clearly unwell. She told me that she'd told the teacher, they'd taken her temperature and told her she was fine. She then said that she felt too poorly to play so she just sat on the bench and watched the big girls. She really wasn't well, but obviously hadn't been able to convince the teachers, and when they told her she was fine, she just withdrew.

In terms of the diagnosis for the child/diagnosis for the family, I think the issue is that we don't just have 1 child. We have 3 very young children, and one of them has very demanding needs. DD3 is NT, but has a strong personality. I worry that DD2 will get lost in the middle. Also, we're often thinking she's being melodramatic, when it's quite possible she's just overwhelmed.

I don't know if she'll have difficulties in later life. I don't know if she'll have big difficulties in school. I think Yr1 will tell us a lot.

Exactly...and your DS1, on first sight to me (literally that first 3 minutes) wasn't obviously with SN. It was only after observing that his needs came through.

I also worry about the complex embedding of language. When instructions get more sophisticated, and they start to expect the children to work out what they're being asked. I think perhaps DD2 will come unstuck.

Thing is, when you express concern about a very obviously autistic child everyone says, "no, can't be because he makes eye contact is just a boy talks so well isn't anything like rainman/my cousins milkman's autistic pedigree kitten

So I've chosen the approach of avoiding talking about a possibly borderline girl sibling. Cos it's only here you won't think I'm nuts.

I know, mariam...that's my fear. I'll be seen as nuts.

Thanks Leonie. I will start making a few casual notes. DD2 is also (along with her constantly loud voice) quite monotone, I think, and tends to express excitement by just Talking louder rather than adjusting tone.

I feel like I'm betraying her.She is lovely, and only almost 5. Shouldn't even be in school yet because she was born a Month early. But then I look at DD3 who only turned 3 in April, and she is so sophisticated with tone, volume, inference, subtlety, it's quite scary!

It's only recently that I'm starting to wonder that instead of DD3 being Einstein, perhaps it's just that she is our first NT child?

Ok, so evidence gathering on the quiet....how on earth do I know what is 'normal' to know what is 'evidence'?

At home I have a very non-NT 6 year old, who behaves like a 2/3 year old. I have a very NT 3 year old, and I have DD2 who is turning 5.

So I have no 'normal' benchmark.

So, this example - is it normal for a just-turning-5?

We have eaten jacket potato for dinner. DD2 has finished dinner, had seconds, and even thirds. She gets up, and hovers near the table, her face very close to the margarine tub.

We ask her what she is doing and she says 'looking at the butter.' She then comes away from the butter and starts flapping/hopping in the middle of the room chanting 'I really really looooveee butter' in a sort of robot voice, with a big grin on her face. She then makes up a song called 'Butter or margarine?' with the words 'Butter or margarine, butter or margarine? Butter butter butter or margarine.'

Is that a normal thing for a (in 11 days) 5 year old to do?

Today she got upset because the next door neighbour's children couldn't come to see our new stairgate and she wanted to show them her (perfectly normal and have had them for at least a year) pyjamas.