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?

It is hugely common that parents of ND kids don't notice if major milestones such as talking are approximately met, because ND is extremely heritable so "they are totally normal - exactly like me/my brother/sister/mum as a kid".

It didn't occur to me that DS might have ADHD in large part because he was August born, so if he seemed a bit behind his peers at the start of school, it seemed like that might account for it. Certainly until age 6 I think kids can be at really different levels of maturity.

In about Year 3 the SENCO started expressing concern about his ability to keep up, which started us on the trajectory to getting a diagnosis. He was diagnosed with inattentive type (no hyperactivity, which also made it harder to see at home). I think it may also have been disguised a bit by the fact, we realised after the diagnosis, that DH almost certainly has ADHD too and we are very talkative family so no one thought much of the kids being very chatty. Our oldest is also probably ND but I'm not sure would reach threshold for diagnosis as they couldn't really be considered to have deficits in learning or socially, but still definitely feels like some degree of ADHD or autism (which looking at our families, one or both ND is on each side we reckon)

Knew very early on with both. Getting diagnosis however hasn’t been so easy. Eldest had a reassessment meeting at 3 and we were told she wasn’t autistic. Eldest was eventually diagnosed at 12. Still waiting for youngest to get an assessment. He’s seven and we’ve been told to expect it not to happen until he’s ten. I’ve known since birth with him

I always thought mine was highly sensitive, diagnosed then at age 9. Youngest I spotted earlier. Age 2 / 3.

@rubyslipperss what do you mean that you had to make eye contact to speak with her?

It's worth looking into 'right to choose' providers as the wait time is often shorter at the moment for assessment, particularly for children over age 5

www.autism.org.uk/advice-and-guidance/topics/diagnosis/before-diagnosis/how-to-request-an-autism-assessment#What%20is%20'Right%20to%20Choose'?

We had to get her attention and try and get eye contact to speak to her so she would comprehend what we were saying. We couldn't just yell from another room' DD get your shoes on we are leaving now' it had to be direct speech. It's very difficult to explain.!!!

Dd was diagnosed at 2.5 but as early as 2 weeks we had issues, feeding, not settling and not needing to sleep, all parked as it's not uncommon but once diagnosed everything made sense. Her specialist said her situation was common and he wished doctors would pick up on cases where newborns simply don't sleep more, instead it's ignored

In short no we didn't notice with ours until they were in school and the ND I am talking of here is dyslexia.

With dd3 we had huge issues as the SENCO was convinced she was on the autistic spectrum. Her "proof" was lack of eye contact. We had. No issue at home and nor had friends. Well dd3 is not on the autistic spectrum but she is severely dyslexic. We had her assesses for autism and she was diagnosed with. Social shyness disorder. Our relationship with the SENCO completely broke down at this point as she was adamant she was right and it was autism not SSD.due to this her dyslexia diagnosis didn't come until year 9 where mil paid for a private assessment (us now having a supportive senco at secondary) when we got the report and shared it with the school. The senco called me and said. "How has she managed such grades with that severe dyslexia) ( She was middle of the road grade wise)

She is now at uni studying astrophysics so doing good. She herself now thinks she has some level fo ADHD but has not sought out a diagnosis for this. She stil doesnt make eyecontact with perople she doesnt know or like very normal for SSD...

Dd2 was more standard dyslexia but she was not officially diagnosed until uni. However both primary and secondary schools worked with her acknowledging her as dyslexic. I wish in hindsight we had pushed for a diagnosis (and I think it is shameful they are not easier to obtain we did not have £500) l for private diagnosis)

I would keep an eye out with your ds if he could be dyslexic. It's often missed in boys and looked on as them misbehaving when they dont do as "told"
Not saying don't look for other diagnosis but keep an eye out.

We had sleep issues with older two. DD2 without them felt like the oddity. Since been told it's likely a sign of ADHD.

@trivialMorning what sorts of sleep issues? Do you mean sleep issues are linked with ADHDH?

Getting to sleep and staying asleep - basically - DS 17 year old a nightmare for this still.

ASD assessment guy when DD1 mentioned she had real problems having left home with sleep to point she'd sought some help - he ask quite a few questions and said common sign of ADHD. They decide no ASD but said there was some other ND. Subsequent assessors and support people have all nodded at sleep issues and said same.

Quick google backed up it seems to be linked in many with ADHD
https://www.sleepfoundation.org/mental-health/adhd-and-sleep

https://www.berkshirehealthcare.nhs.uk/media/109514310/7-adhd-guide-sleep.pdf

https://www.dpt.nhs.uk/download/hh8RoZf97h

https://www.webmd.com/add-adhd/adult-adhd-and-sleep-problems

Babyhood DD1 only sleep on me or in moving pushchair - force me into co-sleeping - toddler would just fall over when exhaustion hit would resits sleep. As child need long and strict sleep routine and sharing bedroom with siblings helped - but she was often still up in night. She was late Aug child so school also exhausted her.

DS less on a issue as baby - though still co-sleep and think may have had reflux as well - but toddler same and as child constant up and down at night - we'd hear him moving round and then have to try and settle him.

Plus lack of sleep and hunger they'd often badly affect their behavior.

DD2 just sleeps - would put herself to bed as toddler/child when tired - which blew my mind - has no issue falling asleep - which TBH I and DH do. Also she was straight forward to toilet train unlike previous two and while everyone says I must have finally got how to teach it- think it was likely them not getting biological feedbacks - they both often fail to drink or eat unlike DD2.

DS 17 - have to make sure he stops before his bedtime - he has alarms but will ignore if into something ( I'm like this but try to model good behaviour) - and do sleep routines - sleep teas/showers/lavender etc. Helps a little - stress make it all worse for him. TBH DD1 seems quite good as a teen in comparisons so was surprised it was such an issue at University for her.