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?

DD1, I knew. She slept all day after she was born and then at 10.30pm she woke up, started crying, and didn't stop until morning. The only thing that calmed her was really firm pats on the back. She did this until 12 weeks old, then gradually started to sleep for an hour, then 2 hours, etc. She always slept naked (except nappy) with no covers and a fan on from about a year old. Would get really upset if you tried to put pjs on. But then when she was 2½ she had 24hr ECG and from them on wore pjs because the cables freaked her out. Odd responses to being left alone.She would either throw toys or try to dismantle them. I raised concern from 8 weeks, and I was consistently told I was paranoid. She actually had a brain malformation, global developmental delay, and epilepsy, diagnosed at 3. She's grown out of the epilepsy. ASD was finally diagnosed at 15 and ADHD is on the table now at 19.

DD2 I clocked at about 18 months. Play was appropriate but never with other kids. Very organised. Functional rather than imaginative. I was told she was copying DD1 with meltdowns. She got in minor trouble at school for behavioural issues such as just leaving the room if she wanted the toilet. Transition to year 1 was disastrous because everything changed. She ended up ill. We had to change school. Same thing transitioning from year 1 to year 2. Home educated for a term, then found a school that could meet her needs. Did well in years 3-4, but fell apart on transition to year 5-6 class. Diagnosed at 11. Now at a specialist independent school for young people who need bespoke timetables.

DD3. Very precocious socially. Confidence beyond her years. Massive sensory issues (used to carry her in to school with socks and shoes in my hands because she couldn't put them on). Popular as a young child but secondary school sophistication left her behind. Perfectionism and anxiety. OCD. We get the ASD results today but diagnosis is expected. She's already registered at the same school as DD2 because she has been out of school for a year.

I knew with my son from when he was about a year- I suspected earlier than that though. He's 6 now and we have his ADHD diagnosis, applying for an EHCP.

He didn't sleep, I mean the stuff we tried/ naps/ overnight could be the basis for a whole book, I won't go into it here! Let's just say he didn't get on with sleep from birth.

He had colic, had to be moved all the time (bounced/ rocked), from when he starting crawling /shuffling forward at 4 months (yes) he never stopped moving himself. Starting waking early, again absolutely non stop. Babbling non stop.

He's an amazing, vibrant boy but I would go to at least one baby group a day (often two) to tire him out and it didn't work. He would always be with the other parents at baby groups, he would never stay with me 😂

We also had biting/ hitting/ general aggression from a young age til year 1 really. Lord of indicators. I feel lucky that it was so obvious in a way as he's now really happy at school and has lots of support/friends. End of nursery/ reception was a challenge, lots of judging parents with little to know empathy/compassion.

My experience with arsehole parents of "perfect" kids could also fill a few chapters ... perhaps I need to get writing that book 😂

Please ignore the MANY typos

Didn't really suspect anything til Year 1 but in retrospect there were things around speech, tantrums, potty training and anxiety in the early years that seemed within normal at the time but might have been indicators.

Year 1 and Year 7 - points at which the demands at school ramp up and change - seem to be trigger points quite often.

@littleluncheon do you mind saying more about the things you noticed in the early years, the speech and tantrums and anxiety? Like what sorts of things now stick out to you?

Nope.
First kid is autistic. Now clue until the school suggested as assessment.
Second kid has ADHD. I thought she was neurotypical because she was so different from the first one.
Doh!

Yes, parents often don't recognise it in their own children because they themselves are ND but don't recognise it in themselves. Speaking from experience, ND is normality in many families- if we've never been diagnosed, our parents have never been diagnosed and so on.

My DC diagnosis was like a house of cards, me, the other DC, husband, my siblings, parents, ditto on the other side of the family. Friends too btw, we attract each other.

I knew something was different when my child was young. However I also think there is a fine line between trauma and nd. My child was also bullied which may have escalated anxiety and behaviours.

I knew from babies with dc1, Dc2 and dc5. With dc3 I suspected adhd from about 2 but I didn't realise he might have autism as well until the TA pointed it out when he was in year 8.

I started wondering around 9 months. She wasn’t diagnosed until she was 9.

Just things like he was a late talker, threw epic tantrums, was very hard to potty train and it took about 18 months (was really funny about pooing basically!), separation anxiety, a few other things like he never did imaginative small world play but liked doing puzzles and put train tracks together. Long lasting interest phases eg. dinosaurs. He could be extremely stubborn.
But none of it was an autism red flag and lots of toddlers do those things too. He waved and pointed and didn't flap or tiptoe walk.

DS1 was a really high needs baby with some delays (largely fine and gross motor). He then both caught up and eased up behaviour wise in toddlerhood. So much so, I used to be vocal on threads people post along the lines of ‘Is my 4 month old autistic?’, ‘Does my 9 month old have ADHD?’ that from my experience, no, probably not. It’ll get better. So from that perspective, no, I didn’t always have my suspicions.

The wheels fell off on starting school and he is now diagnosed autistic and, I’m pretty certain will get an ADHD diagnosis down the line. With the benefit of hindsight, a lot of behaviours from being weeks old probably can be explained by ND. But it’s impossible for say for certain.

I suspect a lot of people are like me. Retrospectively they realise it’s probably all linked, but at the time they had no idea.

DD was a textbook toddler and Infant school child The issues started when she was 6.5/7.

In her case it was more forgetfulness/being overwhelmed, desire for structure and reassurance, hating surprises, all which caused a referral for an ADHD assessment which was inconclusive. Based on a parenting programm we attended we decided to go along with the recommendations we were given as if she had ADHD. I personally felt, there is something but it wasn't enough to push it.

7 years later, lockdown 2 and we had anxiety, panic disorder, self-harm. 2 sessions with a therapist and "I highly recommend an ASD assessment".
Looking back and knowing now so much about ND, the signs were all there, in plain view.

She was diagnosed ASD 1.5 years ago, just turned 16, and ADHD just before Christmas. The ADHD assessment we did together with the ADS was again not supported by her school (having seen the report from the school I wonder if they were talking about the same child).

The ASD assessor saw the name of the person who did the referal when she was 7 and just said "he is known for underdiagnosing girls, a typical case of missed opportunity unfortunately".

I knew from about 2yrs old that my third DS was ‘different’ but couldn’t have labelled it then. I asked his nursery teacher, when he was 4, to really observe him and see what he couldn’t do, rather than what he could do! He was an excellent talker but rarely played, couldn’t peddle a trike, climb up the slide, never chose to draw or paint, he couldn’t hop or skip. His teacher was really surprised at how poor his gross and fine motor skills were, he was so articulate and knowledgeable that everyone just said how clever he was but didn’t notice the areas he was struggling in. To be fair, he never chose to do the things he found hard. He as diagnosed with Asperger’s aged 6, but the process started at age 4.
He was very rule bound, so never had any behaviour problems in primary school, but a few challenges at secondary school when hormones kick in.

A poster asked me what meltdowns looked like. These were basically ' tantrums' times by 2 or more. Severe upset,flailing about, refusing to leave a place, screaming then on occasions bashing me when attempted to leave. It was to the extent people would notice and look. The best one was on a plane age 3, child started screaming having a meltdown ' fuuuuck'. And no, I'm not a feckless feral parent. I thought then, what the heck is this. It took me until 8/9 to really see it and it was a school staff member dropped massive hints that pushed me to get that assessment.

When I think back it's so obvious now. I was running on such low resource and so low in confidence I allowed myself to be gaslit by a few people close to me who needed someone to say 'look how rubbish you are as a parent '.

My little boy developed typically until 20 months, then lost all his language & the skills he had developed, his sleep then became horrendously disrupted & he was diagnosed as autistic aged 3.

None of his words ever came back, he's 6.5 now & also been showing very clear signs of ADHD since about 3.5.

I wouldn't say what you have described necessarily reflects neurodivergence, but my son is very clearly autistic x

This: lack of fine and gross motor skills: DD was awful to learn to cycle, I remember DH nearly loosing it several time. Climbing walls or climbing frames - a big no, she just didn't get what to do.

It got better in the end.

It wasn't until she was a teen that drawing became actually something you could recognise. I still struggle to read her handwriting and we tried everything under the sun to get her to write.

The focus was always on "how good she can read, remember texts for a play, can concentrate (if the topic was of interest to her), is polite and careful, never goes against the rules.

I feel that things are easier now, DD is a Young Leader with a Beaver group and her main one is a primary school teacher. She knows DD has ASD and DH is a lead volunteer. She mentioned how much more training they get, especially for girls and also to include things like motor skills and routine "fixtation" into their observations.

This is exactly our case. And then at 2.5 the sensory overwhelm manifested as violent lashing out whereas before it was just clinging and crying

It doesn’t hurt to have a baseline assessment done at least. I picked up early on that my DS had ADHD and got a baseline assessment done when he was three, which did not lead to a diagnosis because he was too young and they usually wait until school age. But the assessing paediatrician informally put me on notice for a diagnosis and it did lead to access to a lot of developmental support services in his pre-school years, that I made good use of such as speech therapy, psychology and occupational therapy.

By the time he started school with a delayed entry, we were very confident about his formal diagnosis, which he got at age six.

However, once at school the teachers suspected he had ASD as well. I resisted their thoughts because he was too happy and extroverted. He also repurposed items in play to do something else, which I felt ruled it out. So I was convinced they had it wrong.

In the end though, they were right and his diagnosis was adjusted to include ASD when he was eleven. Once we had his educational and medical strategies attuned to the new diagnosis, we made massive improvements.
Now that he is 18, his ASD is really obvious and he seems to have grown out of the ADHD.
Schools do spend a lot of time with our kids and teachers have seen many past students as a comparison point. So I do think it’s worth exploring.

Not at all. And I feel I completely failed her as I had two careers, that both involved work with ND people. She was diagnosed at 16 when she went to college and had a complete breakdown.

Looking back I can absolutely pinpoint so many things, but at the time I never joined the dots at all.

I think it just depends massively what your previous experience is, doesn't it?

I never questioned it at all for DS1 even though in hindsight he was one of the most challenging children ever at 3/4/5. I just thought all children were like that and I was a bit crap at managing him

I got diagnosed myself with ADHD when he was 7 and from learning about the type of ADHD I had (I hadn't realised there was a type without hyperactivity) I realised the signs were pretty clear in him as well but he didn't get diagnosed until he was 10, by which point he didn't really need a diagnosis because he'd grown out of most of the problematic behaviours.

DS2 I had a feeling about from when he was about 2. The weird thing about this is that I would have been sure autism would be the main factor - but he has just been assessed aged 6 and they say ADHD, no autism. However, they were very clear that he is quirky/different, which is not really a thought I've ever had about DS1.

I hope you don't mind me asking but @Rummikub and a few others, what benefit did you and your child get from having the assessment?

I understand ADHD can be medicated if necessary but for autism, there's no "treatment" so to speak. So now that it's diagnosed, how does this now change anything for them?

I hope I'm I haven't worded this rudely. I suspect I am ND and worry for my children that if they are ND, what their lives might be like. Particularly if there are behavioural problems involved.

Yes and no. Dd is the youngest of five children, i noticed she did everything later than my other children and being the baby I was glad that she wasn't growing up as fast as them. She didn't sleep through the night until she was nearly 3 but i just thought she was a bad sleeper and brushed it off. But I was floored when one day while she was in nursery I was called in to have a meeting. They told me that she was flipping tables, hurling chairs and pulling displays off the wall and hurting the staff and other children. She was 3 years old 😳 they pulled out a diary they'd been keeping of all the stuff she had done and ask me if it was ok for them to refer her to cdc to be assessed. I started researching and it all made sense. The preferring to play alone although she's close in age with her sister, the no eye contact and struggle to make friends ect ect she was finally assessed at 6 and was diagnosed at 7 with adhd and is now 8 and doing much better at school but there are still days where she refuses to do her work or will just walk out of the classroom.

In your first post I didn't think there was anything to suggest ASD but now I've changed my mind. Meltdowns at 6 are unusual - they normally stop around 4. The same with blowing raspberries on his arm, I wouldn't really expect that at 6 - it's quite immature behaviour and he doesn't seem to be grasping that it's not appropriate and disruptive in class. Not liking to play in a group and choosing to play alone is also unusual at this age (but typical ASD), and being bullied is so common with kids with ASD - others often seem to pick up on them being sensitive and a bit different. Be aware that if he is not listening in class it might be that he needs to sit very near the teacher because he can't filter out distractions - and so might be really struggling to listen and hear the teacher.

I had no idea with DS until he was 9 or 10 - it was never suggested before then and even the teacher who suggested it wasn't convinced. There were of course there were lots of little indicators that I put down to his age, being an only child or just him being a bit quirky. He had a few minor sensory issues, would put his hands over his ears if noise was very loud (even though he didn't mind loud noises), he didn't like certain clothes and although ate very well eventually he wasn't the easiest to wean and potty train. Still doesn't like certain textures. He went through phases where he was really into one thing or another - at one time it was telephones.

He had a stage of loving slapstick clowns and then thought it was fun to trip other people up not understanding why it was a problem for them when it was fine for the clowns. He explained jokes when he first started telling them. He loved to talk at me about his favourite tv shows and characters and didn't notice when I zoned out and just ummed and ahhed along. He struggled with transitions and needed warning if he was going to have to leave an activity he was enjoying. He talked to himself quite a lot.

He always played quite well with other kids and had friends at primary school (secondary was much harder). His speech was very good and he did really well academically all through school. He only ever had two meltdowns/tantrums in his life. He loved me to play with him and we would plays trains or farms or all sorts of other imaginative play. He never flapped or tip toe walked or span wheels, he clapped and pointed - although I have no idea if he was late with these.

He's now doing great as a young adult.

Both of these posts strongly suggest dyspraxia as well as ASD. DS has a diagnosis of both and poor hand writing, difficulty bike riding etc is absolutely typical. They are not necessarily ASD traits.