To ask if your DC is neurodiverse, did you always 'know'?

[ZoinksRun]

DD is lovely, kind and curious. As my eldest, and with little experience of other people's children I didn't really pick anything up of what babies do at what age. She was early to crawl and walk, late when she started talking.
It was very difficult to settle her into childcare. Once we had three months of settling in sessions at a nursery before I switched to a childminder. The childminder was lovely but did admit she was the most difficult to settle in her twenty years of experience! My dd always was very attached to me, and even now won't let me go to the car (which is on our drive) without her.

The childminder questioned autism at 3 due to my dd putting her hands on her ears a lot. She is very noise sensitive and repeated things over and over (like a script.) Her understanding was good and she got on well with other kids, however she was very distressed when they got upset, often crying for way longer than they did.
Fastfoward to her being six and I'm still not sure. She's been to preschool and school and neither have raised it. She has a care plan for anxiety, which her preschool introduced, and at the time I felt they weren't telling me everything.

School say they don't formally start looking into things until they are 7 (she's 6) but I only know this because a friend is waiting for SENco support from them for her son. I worry that school won't pick this up, as she's not a management issue at all. She finds it very hard to concentrate and often won't stop moving when asked to do tasks, it's like a compulsion to fidget. We often do maths whilst playing so she has something to do with her hands.
I suppose what I want is an answer one way or another. Her godmother thinks she might have ADHD and autism, as she thinks DD is very similar to her sister who has these diagnosis's.
Just wondered if anyone could help me understand whether I should have known or whether this is sometimes a complete shock (not in a bad way) to the parents too.

My son was diagnosed with asd aged nine but in reality we had known something was wrong early. He missed milestones, walking , pointing and he didn’t talk properly unti 4 ish
He was hard work, you couldn’t take him places, he would run off and hide. Up unti he started reception I had him strapped in a buggy. I raised my concern with a health visitor and she described him as spirited.
Looking back it was so obvious but I got fobbed of by all and sundry

@vickibee did you put it in those words to anyone, as in 'I think he may have autism?' It's frustrating isn't it because I feel that as mothers we sometimes know deep down.

Yep … my daughter is 15, and we are just now going through the assessment process. I did go to the GP for help a few years back, but was fobbed off. She was just labelled as “anxious”, but nobody really knew why.
Glad we are starting to get help now, feels years too late

@ExtraOnions can I ask what you raised with your GP at the time?

My DN is non verbal autistic and we knew pretty early on something wasn't quite right. For about a year doctors were questioning her hearing (at about 2) but as she bobbed to music etc we knew that probably wasn't it. When she started losing the few words she could say and regressing in other ways by 3 it was very obvious and she was 'diagnosed' not long after - so very very early. She goes to specialist school now and has had a place right from the start. Her brother is similar but presents in different ways and I think because they were looking out for it, it was easier to see? He got his full diagnosis at 4. Their sister is 'neurotypical' and didn't present in the same way at all as a child. Very switched on and focused, very involved in what mum and dad are doing etc. For the two neuro diverse their mum and dad might as well be statues though occasionally my nephew will give them a cuddle. But every neuro diverse child will present in a different way. I'd say if you gut says something isn't quite 'right' you're probably on to something. Mum knows best!!

Yes one DC was diagnosed as a toddler. Always thought something was out of place. Don’t let anyone fob you off. Trust your gut. Get a private diagnosis if you need it. Good luck x

As a girl with DD I would start going down the diagnostic route now. She may well cope at school ok because of the routines and she's good at masking.

We knew from about 18 months and diagnosed at 2. He's a beautiful boy with very distinctive behaviour patterns.

We didn't spot the early signs with DC1 until my DSis pointed it out. They were diagnosed aged 4yo. To be fair, I didn't realise that I had Asperger's until DC1 was on the diagnostic path and we realised that I'm actually very similar. I have also since received a diagnosis.

I'm not convinced by the argument that mothers 'know' - we spot some things/sense something is off perhaps, but that's a long way from knowing (although future diagnosis for ASD/cancer/other conditions depending on what we've noticed may make us feel vindicated/right in our concerns)

I started to get the feeling that my son wasn't like other children when he was about a year or so old. He didn't present as typically autistic in lots of ways as no sensory issues, very adventurous, always thrilled to try new things. He also slept really well. He was absolutely unstoppable when awake though. I found him exhausting. He would bolt off all the time, no sense of danger, couldn't sit still.

I got fobbed off a lot. Even his dad thought he would calm down eventually. School said he was just wild/disruptive and needed "proper parenting" (they clearly disapproved off me working full time). I always had the feeling though that he wasn't "naughty" just really impulsive.

He was my only until he was 9 and I didn't really become convinced he was neurodiverse until my younger child was a year old and it was so clear how different they were. Also by this stage his chatty ways were less charming to adults and there were a few remarks about him being "odd".

Finally when he went to secondary school his form teacher listened to me and agreed. He didn't get a diagnosis of ASD until he was nearly 14 (via CAMHS). We then went private to get a diagnosis of ADHD (age 15) by which time I was already sure.

I knew DS was different from about 6 or 7 but at that stage as a first time mum just though he had a different personality. His own man, a whiz at maths and sciences, extremely picky eater, not swayed by fads or peer pressure.

At about 8 or 9 I was beginning to be concerned about his isolation and paid for a private consultation with a child psychiatrist who basically told me I was a neurotic middle class mother.

His expensive private secondary school failed to spot or suggest he could have Aspergers (as the diagnosis would have been then) - he just got pushed into being ‘normal’ (playing sport, eating school food) and I’d be pulled in for ‘chats’ about how he was ‘struggling socially’ despite his obviously high academic ability.

I only managed to put a name to it when he was in his early 20s. Too late for me to arrange a diagnosis, too late to give him a supportive and positive upbringing that would have made the most of his talents and taught him the resiliance and life skills he needs.

He is now in his 30s, has a stable job and lives independently, is probably as happy as he can be.

But I am an angry, angry parent for him.

No, it wasn't apparent immediately. Dd hit all her milestones as a baby and toddler and was very verbal. When she was 2-3 her eye contact, attention span and certain social cues (not responding to her name, not looking when you point) were a cause for concern and she was eventually diagnosed aged 6.

I knew/suspected that ds had ASC from months old. He is my second child and was diagnosed at age 3. He was very unsettled, hated breastfeeding, didn’t like cuddles, really struggled to settle and sleep. He was late with his milestones. He was always obsessed/very stimulated by lights and from early on enjoyed lining up anything he had to hand. He had extra HV interventions from fairly early on. He is now 6, in mainstream school with an EHCP. He is flourishing. He is a chatty, sociable little thing and enjoys cuddles and affection (on his own terms!). The early diagnosis meant we could invest in play based therapy and lots of early speech and language therapy.

I started to wonder when DS was between 2 years 8 months and 3.5.

He just didn’t seem to engage with people that much, there was often a sort of blankness there...

He has autism, diagnosed in reception.

DD is 11 and we just got an autism diagnosis last week. If you had asked me a year ago, I would have said that I didn't think she was autistic. It's only really in the last 6 months that we started to think she could be. We thought she was just very sensitive and anxious and the school thought the same. A lot of things seem so obvious now we have the diagnosis.

[quote ZoinksRun]@ExtraOnions can I ask what you raised with your GP at the time?[/quote]
There was something just not right in her behaviour …

It’s really hard to describe. She had emotional disregulation from a really early age, her reactions to things were completely “over the top” , she would get very angry (I now recognise this as a sort of panic attack) about really minor things. She had this real black & white view if the world (what was fair and unfair) and struggled with “shades of grey”… an sort of perceived injustice and she would emotionally struggle.
We had days where she would refuse to go into school (I now realise that organising herself to do homework was a massive issue) .. and she would panic if I tried to push get into going. She always struggled with noise and busy-ness.

I could kick myself for not pushing things earlier, she had a crisis in October last year, that led us to CAMHS, and has now led to us being on the diagnostic path

Sounds very like my DD who has dyslexia, dyspraxia but overall doing very well. Anxious, very fidgety, sensitive, some language and reading difficulties.
You can have her assessed if she is having difficulties on a daily basis. Privately if you feel an urgency about it.
A label can help in three main ways: 1. The child can understand why they have difficulty with x and y and figure out ways around it, rather than just thinking they are stupid. 2. They may learn differently, eg visually and practically rather than through reading and sitting still, so teachers can be aware (eg my daughter uses fidget toys in class and is allowed to move around quietly every so often), and 3. If severe, allowances can be made in state exams eg extra time.
There’s no “treatment”. The professionals can advise and point in the right directions but bottom line is, the vast vast majority of any help and info she will ever get will be through you at home and through herself when she is old enough to self-motivate. Eg if she is a poor reader you will need to find a reading program to do with her at home or a maths app that follows the school curriculum where with your help she can over-learn at home (10 mins per day adds up significantly over the years).
Other hints:
Boost her self esteem. Tell her she may find certain things difficult but together you’ll work around them. Find things she enjoys and is good at ?sport, art, music - and encourage achievement in those. Tell her thousands of times that you love her and she is amazing. Keep her fit and active to help with sports/games and help ease her fidgets. Play lots of board and card games with her.
She may be different to my DD but hopefully some of the above may help.
Good luck and enjoy!!

DS has just left college at 18 . It was suggested in his last year that he may have undiagnosed ADHD . He is waiting for an assessment but I am sad that I missed the cues as he could have had more support through school .

I suspect my DS has ASD - he sounds exactly like you describe with your DD. We’ve had to withdraw him from nursery as he couldn’t cope at all with the noise and other kids. He’s great in a small group of kids, has a few friends, but he does cover his ears a lot and doesn’t seem to be learning social skills despite being very well socialised and very friendly. He’s very clever and quick to learn, but really obsesses about things. He’s the sweetest most loving little boy. He’s 3 now.

I’ve asked the HV for support and she’s said it’s still too early to diagnose him, and as we plan home education, we will go through the GP.

I first noticed at 5 months old that he couldn’t stand loud noise.

He is exactly like me - I have long suspected I have ASD, but I don’t see a whole lot of point trying to get a diagnosis now.

I'm not going to answer your question right now because my answer is complex but I will say this:

Unless your child is disruptive or very behind academically it's not really in the school's interest to diagnose her.

It's more work for them to support and meet their needs so if they don't have to, they won't.

I've known of schools to "sit on" children they knew had additional needs and not tell the parents for years.

It's ridiculous to think they won't do anything until 7, the only thing I've heard of with that in mind is dyslexia and it's unacceptable.

You daughter could be labeled naughty if she can't sit still especially as she moves up the classes, so I would go for a diagnosis.

Waiting lists for assessment where I live are 2 years. So get on the waiting list ASAP or if you can, get a private full NHS standard assessment including from a sensory integrated occupational therapist who can also help find ways to give your daughter the sensory input she needs.

How is your daughter's behaviour after school / at home?

I was my parents' first born. They knew that something was slightly off but didn't know what and had no other children to compare me to.

Diagnosed with Asperger's 10 years ago.

No. We always knew she was a bit different to the other children (peers and siblings), more highly strung, anxious, 'difficult' from when she was little. But only got a diagnosis at 17. Now we know more it all makes perfect sense, she's a clever girl and she was masking at school so no one ever raised concerns and we didn't realise until she got totally overwhelmed (and then it took a year of going between psychologists and psychiatrists to get this diagnosis)

I started to suspect something at 2.5, but in retrospect there were signs from about 18 months that we didn't realise were significant at the time. There was about a year of fobbing off / wait and see (his sister was born and his nursery moved sites, so he could have been unsettled by these), then nursary put in a referral at 3.5.

He's now just under 5, and we're still undergoing assessment but will hopefully get a diagnosis in the next few months. He's in the preschool attached to the school he will be starting in September and they have been great, he has a 1:1 for part of the session to help him stay on task and plans in place for support in September.

If you feel there might be something, then keep on pressuring the school to investigate, it's ridiculous that they won't do anything until 7. By then they could have spent 3 years not been able to learn effectively because school haven't provided the suport/adjustments they need.

Sometimes things get worse, sometimes they get better.

My eldest had some autistic traits, but they have lessened.
My middle one I didn’t have any worries about, but now he’s being assessed for ADHD and ASD.

So don’t feel bad that you missed signs. Just go to the GP and move on with it from now.

No - not with number one. He met all his key milestones but seemed less advanced that some of the NCT babies. I thought it was our bad parenting

It was school who started to hint. It started with poor pen control and then not being able to follow multiple instructions. This lead to a referral to the EP and eventually a dyspraxia diagnosis.

Through this process we started to see other issues and the process ended with a diagnosis of ASD and ADHD.

Number 2 - can seem similarities with No1, process started earlier but not got anywhere due to covid. Not sure what diagnosis he will get - his issues are less than his brother, but he is more behind at school, not helped by lockdown.