Parents of ND children: did you always suspect your child was ND?

[wonderingmumtonight]

I'm the mum to a gorgeous 6 yo boy. He's always been a happy chappy but we've noticed his behaviour has changed in the past year or so and he's been struggling in school (mostly not listening well or being cheeky), so they have suggested he might have some neurodiversity and we should have him assessed. I've heard many mums say "they always knew there was something different," but I didn't have that. (I'm a nurse and have some experience with ND diagnoses). I've seen him in many settings and he always seems to behave like other children his age, if perhaps a bit shy but warms up quickly. So I'm wondering what sorts of things did you later think back on and recognise as being early signs of ND?

I am fully in favour of getting him whatever help or support he might need but I am also surprised, as I never suspected anything and neither DH nor I have any ND in the family. He's also been through loads in the past year or so (we moved, had a new baby, our beloved dog died, he was also bullied). So it seems like there could be other reasons for changes in his behaviour than just ND? Will that be incorporated into the assessments?

@overthinkersanonnymus for me, the diagnosis has been everything. I'm a realist and living in truth and reality are very important values to me. I absolutely had to know, one of the reasons I pushed so hard against lots of people to get the assessment.

Firstly - weird things at school started cropping up. My son said some odd things and got upset over certain topics ( sex) so tbh I was getting worried some safeguarding issue would be getting flagged! I was getting called in regularly.

The way schools will do as little as possible until you push back is absolutely ruining parents right now ( I'm on many support groups).
School says diagnosis doesn't matter. It does! When you go back in writing with the details of an assessment report and say these are their problems, can you help support please in light of their proven disability status? Can you stop issuing detentions every day please in light of disabled status?

Without this evidence I know you will certainly be gaslit and possibly blamed for problems in school by someone at least once in this journey.

If you end up applying for an ECHP, I believe this evidence carries extra weight.

Should there be any problems with the criminal justice system ( a risk I'm sad to say for some), this information/ evidence is important.

Benefit support you might need down the line for them should their struggles intensify.

Maybe the most important - that person knowing in themself who they are, why they struggle with this and that. Knowing they aren't some other incorrect MH diagnosis such as ' borderline personality disorder ' that so commonly gets slapped on undiagnosed Autistic people.

I need to live in reality and know who I am and I forced that on my son in some ways by getting him assessed. I could forsee problems coming in these areas and knew this diagnosis was vital ( once I realised myself he was ND of course )

The other massive one right now is trying ADHD meds. School is becoming very difficult focus and concentrate wise.

With DD, we knew from birth. She was not a regular baby. Hated all the normal baby things (being rocked, car travel, pushchair). Toddler years it became blindingly obvious (not talking, screaming constantly, not sleeping to the point I had alopecia, leaning out of the pushchair to attack strangers if we were out). We got a formal diagnosis at age 4.

DS, we didn't really pick it up until he was school age and it became apparent his 'energy' and impulsiveness was not in line with his peers.

@Tittat50 thank you so much for replying to me in a way that is helpful and understanding. I really didn't want to upset anyone. What you have said makes perfect sense.

Thank god your child has a mum Like you to advocate for him.

Tony Attwood who is arguably one of the world’s leading Autism experts, didn’t see that his son was autistic until the son was in adulthood - and even then someone else pointed it out.
So, I definitely think you should give yourself a break on that front!

What a lovely comment, thank you. You’ve brought tears to my eyes.

Oh don’t worry, loads of brilliant parents don’t notice at all, partly cos they’re so
attuned to DC that they understand them better than anyone else, so they can’t see problems.

Our family noticed two related DS’s had something going on as other children were petrified of them and adults swerved them in case you got hit or hurt. Everyone noticed.

Thank God the lovely parents hadn’t clocked anything - it wouldn’t have made a difference at such a young age, and they were exactly the right people to turn the eventual diagnosis round to the best it could be.

From a toddler I'd say, huge meltdowns daily, hyperactive, precocious in some of their milestones (speech, social skills) but really delayed in walking and toileting. As they've got older they have struggled in social skills as they've become more nuanced (they don't understand it at all), meltdowns are extreme as they are bigger and hurt.

I saw lots of different things - at the time (and without the beauty of hindsight) the biggest flags were : not wanting cuddles at all nor giving them, trouble with solids - it was as if he thought we were trying to poison him, hating sleep would nap for a few mins as a baby and that was it, up multiple times in the day, delayed speech. The temper tantrums were something else, like a typical one but on steroids. They would last an hour easily. Totally lost control.

this is a random one, but I did read someone famous talk about the same thing re their kid with autism - in the buggy, if we had to go somewhere and then turn round and walk back on ourselves on the exact same path, he would go ballistic. It was if he knew it was a waste of time / a mistake. I used to dread walking to the library and then having to do a u turn if I’d got the opening time wrong. Melt down. All the way home. And I mean all the way.

looking back he was quite unexpressive and looked pissed off most of the time. He would happily be put down - the opposite to a Velcro baby all my friends talked about. I was quite smug about it at the time (what a tw*t)

Yes most definitely, lack of speech and delayed in meeting milestones. Finally on the ASD pathway but also shows ADHD traits and has learning needs. He's 11 now and he's been under some sort of service since he was 18m old which I find shocking. He struggles greatly with emotional disregulation and has frequent meltdowns/outbursts.

DD15 no, I thought she was the easiest baby, in primary she was just quiet but got along well, in secondary the shit hit the fan. Currently on the ASD pathway though tbf I think it's happened too late for her, she has EBSA and hasn't been able to attend since April last year.

DD10 also yes, she was incredibly hyperactive and always up to mischief. She has ADHD but medication is helping with this.

DD 21m unfortunately also shows traits of ASD and has a portage worker, currently waiting on our SALT appointment.

I wouldn't say not listening/being cheeky points to being ND. Have school mentioned anything else? Sometimes I think schools are a little nervous to tell parents how it is and tend to sugarcoat it a bit? I'd rather know what we're dealing with!

My daughter is 20 and was diagnosed autistic aged 17. We don’t have an inkling but in year 9 we were contacted by the school to say she’d told them she was self harming. Got her in to CAMHS. Another issue was her lack of eating. She was diagnosed with an eating disorder and later with anxiety and depression. She read up about autism and felt she ticked a lot of the boxes so we got her assessed.

Up until she reached puberty she was a happy little girl. Maybe she was masking but we didn’t see it.

@R053 mind sharing what sorts of things flagged for ADHD for you at 2?

Extreme hyperactivity, sensory seeking to the extreme for example sniffing at everything, spinning past the point where most of us would be dizzy and sick. And very, very noisy! Oddly, he could hyper focus to an extreme too - flicking light switches on and off for ages.

@daffodilandtulip thank you, do you mind sharing a bit more about what you noticed?

We were suspicious at 12 months. Certain by 18 months. Diagnosed at 2 as autistic. Now 6 and have added ADHD as well.

I would say that if school are suspicious of ND, there are maybe other signs that they're seeing. I would see if you can arrange a meeting with his teacher and SENCO so they can go through things in more detail with you.

We have (not necessarily consciously) made many adaptations at home to meet our sons needs. It took a long time of sitting and thinking about it to realise what these were. My husband also couldn't always see what I could see in the early days - turns out he's also autistic. He is also our only child so we dont really have a benchmark of what is neurotypical and age appropriate.

School staff may have more specific insights. For example you say your son is sociable, makes friends but struggles in groups. I could say this about my son, but in reality with a deeper view, I can see that he considers everyone "his friend", is happy with other kids in his space and likes them joining in his play as long as it fits his style, but he has never actually initiated an interaction with another child of his own accord, and gets lost in a group unless he has an adult scaffolding those interactions.

That said, my sons autism is fairly outwardly obvious and it's like he's read the DSM-5 in terms of how his autism presents.

It's also important to remember that "neurodivergent" includes a whole load of things other than the autism and ADHD that most people immediately think of.

Wishing you and your son all the best

She’s a very clever girl, very characteristic of the old Asperger’s term. She was reading novels in Y1, always distracted in class (because she’d done all the work and was bored), obsessed with maths - so “didn’t listen” because she was engrossed, didn’t make many friends.

Her main things are routine, rules, social norms and being overwhelmed.

I worked shifts and would collect her from nursery at different times. If I went too early, she would hide under a desk reading and refuse to get out - if I went after xyz children had left, she was fine.

Walking to nursery, she would kick off if we hadn’t crossed over. I thought she was being a “terrible two” because I hadn’t let her press the button, but it was just about the side of the road.

Special occasions - could not cope with the change in routine. Kicked off at Christmas if we didn’t have breakfast before presents. After a party or a holiday, she would go straight to her room and not communicate for hours - self regulating.

Similarly, if we ran out of milk or something, we would have to go to the shop in pjs, as she couldn’t get dressed until we had done breakfast. And she’s had the same breakfast almost every day ever.

Lots of issues with friends seeing her as rude. I’ve had to intervene and teach her what is the “normal” thing to say to people in certain situations many times. But then obsessed with rules - like tells me off for minor driving issues because it genuinely freaks her out.

Always needing soft blankets and refusing to wear certain clothes or have certain colours around. Won’t eat things like yogurts because the “bits”.

Obsessions with watching the same show REPEATEDLY, with headphones on, ignoring the world, which she tells me now is soothing when she’s stressed.

But all of these things I just saw as characteristics, until she went to college and could not cope with the varied hours and huge rooms for exams and making new friends. She was diagnosed after college staff wondering why she was always sitting in the same chair for hours some days, waiting for lessons, because of routine.

No, it was a shock to get the diagnosis. He was always different, at one point I was googling narcissism as I was worried how he reacted to some things! Then it clicked that it was likely ADHD around aged 8 and that answered everything for me, but school requested a combined assessment 'just in case' and he got diagnosed with both at 10.

I had an idea in my head what ASD was, and he doesn't fit that. He's very chatty, sociable (although gets it wrong!) but now he's got the diagnosis I can see it more, how he takes things literally, how his communication can be quite forced, clearly learned, not natural.

He's a superstar, I don't know anyone like him, not a dull moment with him that's for sure!

I have 3 Autistic DC. One I knew something was up from the time he was 20 months old, very extreme behaviour, big sensory issues, flight risk, hurting himself, developmental delays across the board. Youngest I suspected from round 3.5, but might not have if we hadn't had his brother first. Eldest was 6 before I even considered the idea and then only because I could see similar patterns, similar causes. I put her on a waiting list for assessment then and I'm glad I did. I wasn't sure until she was 7.5, shortly before she was assessed and diagnosed. Her diagnosis was a big relief to her, she felt like her friends thought differently, she felt like she didn't fit. She was relieved to know there was a reason she felt different.

Some kids very much fly under the radar. They're the kids that mask well, that cope and hide it until the day they can't anymore. We had big issues around the end of primary and start of high school, she reached the limit of her ability to cope with the extra stressors life puts on her becoming of her autism. Its is a common time for autistic kids who mask well to fall apart. I'd recommend pursuing it, a diagnosis takes a long time. If you wait until you're sure or until he need it you won't be able to get a diagnosis in time let alone get supports in place fast enough. If he gets to the top the list for assessment and you're sure he doesn't need it you can always give up your spot to the next person waiting. Even if you can afford to go private there's often still a significant wait time. Having everything in place doesn't mean they won't struggle, but it does give you options you otherwise won't have. Also knowing there's a reason things feel harder can help psychologically, some kids beat themselves up a lot if they're not doing well.

My son was an incredibly passive baby and very easy for the first year. His early language acquisition was different. He wasn't non verbal but he had noticeably different ways of talking. His terrible twos that were extreme. With hindsight it was meltdowns from sensory overwhelm, but I didn't know anything about that then. He tip toe walked, hand flapped and liked opening and closing doors repeatedly.

Dc1 - i strongly suspected since he learnt to talk
Dc2 - completely blindsided aged 12

DD wasn't diagnosed till secondary and picked up by Senco around 11. With hindsight she couldn't make friends , couldn't regulate at all at home having almost daily meltdowns and had different ways of playing to other children . Her child minder couldn't look after her as she was so naughty and wouldn't listen , and we always had to make eye contact to speak to her . She has ASD/ ADHD .

Reading with interest, and wondering if any of the parents here subsequently got diagnosed following their child's diagnosis? Or now suspect they are ND but not seeking a formal diagnosis as don't feel it necessary?

I have 3 with ASD. DD2 was diagnosed 6 years ago, DD1 was diagnosed 3 years ago, DD3 was diagnosed this week. I decided to seek assessment in July last year and was diagnosed last week. DH decided to seek assessment in April last year and his assessment is at the end of January. His ASD traits are far more stereotypically ASD than mine, so I am assuming he will be diagnosed.

I have long suspected I may be autistic - I remember very clearly reading a newspaper article about Asperger's (as it was then called) when I was about 15, and it was a lightbulb moment - like that could be the explanation why I always felt different. I'm not totally sure, because there are a lot of things that don't apply to me, but I would not be surprised. There are a lot of other adults in my family who might well meet the criteria but have masked/adapted as well as they could. I'm not particularly interested in seeking a formal diagnosis as I don't think it would change anything for me.

@SockQueen @Lougle thank you for sharing your experiences. I've lost count of the amount of people who've suggested I have ADHD, and although most of the time I don't feel I need a diagnosis, sometimes I wonder if medication might help me focus (peri-menopause not helping!).

People have also suggested ds2 might be on the spectrum over the years, but he's doing absolutely brilliantly in school and out, no issues. He's definitely sensitive. He's yr6 and I'm scared secondary school will be where it will become apparent that, actually, he's ND and needs support, and I may have left it "too late" by then to get an EHCP and support. TBH even the thought of me talking to him about it at this stage freaks me out. Nobody in either of our families have a diagnosis or show obvious traits or struggles with ND. He's happy enough so I don't feel the need to get him in the system at the moment, but know the wait list for NHS is about three years...

I thought first two had inherited my dyslexia and dyspraxia took till DD1 was 19 to get her tested. They also found inattentive ADHD - ADHD rife in wider family but ruled out ASD.

During ASD assessment it was pointed out a lot of what we though of as normal isn't in wider population.

As baby DD1 was a velcro baby - had obvious noise sensitivity and textures - reacted to some food chemical - orange dye went yappy bounced off walls - then struggled with reading and school work in early years with home support caught up. As time went on thought there could be more than just what I had.

DS and DD2 aren't diagnosed - DS has something - very least dyspraxia - very shy once started school - very rigid in routine and thinking at times though as teen much better than he was - struggled with organisation - teachers though some issues with playing but I never saw. Suspect if he tries to get assessed at Uni - he may find same as DD1.

First two had meltdowns - when nothing but quite safe room work - and tantrums very late till 9 or 10 - trying to talk about it with anyone though meant our usually my parenting was blamed so learnt to manage.

Only recently thought D2 may have some ND - though she two was a velcro baby it seemed less an issue with her - slow processing was noticed by her first two teachers - sound and texture problems have become apparent as she ages and she was always an extremely fussy eater. I think school environment has been bad - and last year at least her anxiety was really bad been better this year as better teachers and more crowd control and less pointless rules making life harder for pupils - no toilet access making eating and drink really hard in school day - that's eased.

School have flip flopped - saying time issue others not - often felt very undermined by them - or done not reputable diagnostic tests - GP just put them on lists that went no where. We couldn't afford private.

Nephew - Dsis child - at 4 been flagged for likely ADHD - his Dad has it - he is very loud and wild and reacts to some foods - needs lots of exercise - nursery flagged it school still thinking about it.