Non NT children.

[PepperSteaks]

What was your first inkling your child wasn’t NT or had SEN? I’m becoming increasingly worried about DD but whenever I ask anyone they just brush it off and say it’s because she’s a baby (She’s 19 months)

@elliejjtiny

Sorry, can I ask what signs you had pre-birth? I’m just curious, not doubtful.

@oldbrownshoe

I think the provision in different areas is very variable.

After some observation at nursery we went from agreeing to an assessment to diagnosis is about 6 months which seems unusually quick.

He was generally under SEN observation for a while before but I can understand their confusion with my son as he presents atypically in lots of ways and is somewhat ‘unpredictable’.

Watching as in a similar predicament with DS (22 months). He never ever stops screaming and tantrumming. My gut tells me something is not quite right, it's other things too so interesting to hear the experiences of others

@oldbrownshoe my daughter is quite high functioning but aged 2 she didn't interact with the other children like a NT child would. She was also very sensitive to certain stimuli- (still is). Her nursery sent off all the referrals when she had just turned 3. It then took a year of meeting with the psychologist at nursery several times and with the paediatrician twice before she was finally diagnosed. My understanding is that there is general reluctance to diagnose before 4.
The process also takes a long time because of issues with funding and cuts to resources.
We were very lucky as DD1's nursery did everything and all the referrals for us. Looking back esp now I have DD2 it was obvious that she had it.

Oldbrownshoe - In our case, like i said we didn't know anything was wrong, we just thought he was a bit 'quirky'. Never had any complaints about him at school except the odd, 'he needs to listen a bit more'. He went through nursery and infants without much trouble. Then after infants we moved area and he started yr 3 at a small prep school with 12 in a class. Within 2 weeks we were called in and several comments about his behaviour left us reeling. we were referred and he was assessed and diagnosis all came within about 4 months.

Problem is a lot of dc with adhd their symptoms aren't that obvious until they start school then it becomes obvious because they face the challenge of having to still still and focus, they are expected to do work requiring focus etc. So a lot are flagged up round school age.

She sounds similar to mine at that age who has had lots of physio, bit of speech therapy, lots of tests since. Still ongoing. Apparently the dribbling was probably due to her hypermobility as everything in her body was just slacker/looser than it should be, even including the muscles in her mouth. It also affected her swallowing. See if the children's physio in your area does any drop ins to get an assessment? GPs and HVs didn't really have a clue in my case, and several categorically stated she had no hypermobility before the very senior physio saw us and said she absolutely did, and still does.

Thank you.

@Merryoldgoat I was being induced and ds started banging his head against my pelvis and then he kind of flung his head backwards when he was meant to tuck it in so instead of coming out top/back of his head first he tried to come out forehead/eyebrows first. I wouldn't normally count that as a sign but he has always banged his head against me/his bed/the wall and flung his head back when he is upset so I've always counted that as the first indication that he wasn't nt.

Everyone who is saying they had a feeling when the children were young, as in 6 months to 18 months, what exactly were the signs/behaviours that worried you?

4/5. Sensory issues. Noticed things were very black and white too.

Not enough for any diagnosis but for sure has some quirks. Also not enough for other children to understand that they're different rather than just being what they see as 'naughty'.

@gunpowdergelatine Have you asked for a hearing check? Frustrations over communication and lack of hearing can be that way at that age. We missed it in ours and wish we'd caught sooner.

For my son at six weeks he screamed and couldn't be comforted, he never snuggled into me he was always very stiff and he'd always look for lights rather than my face. As he got older he never smiled as though he recognised me, he spun wheels on cars and prams and watched the watching machine for a full cycle whenever he could.
For my daughter at four months we went to a photo shoot, in one hour in spite of having four people trying to make her smile she only smiled once at a stuffed tigger like the one she had at home. At eight months at the GP's clinic she was so different from the other babies who were demanding attention, reaching out and grabbing stuff, making noises where dd sat silently doing nothing.

@ForAMinuteThere no I haven't but thank you I will check! He does seem to have sensitive hearing thinking about it.

He's also pretty much not speaking and gets extremely upset at anything out of place or anything on his hands. Even a smudge of chocolate makes him go wild. He's very clingy, I can never put him down in the house, he's forever on my hip at almost 2.

I feel people watch and my friends and family judge, it's horrendous, and if one more fucking person tells me it's because I still breastfeeding I may actually throttle them

I knew DD was when she was 5 months old and I honestly couldn't tell you how on Earth I knew other than a look in her eye. She was the happiest baby, ate and slept well, good eye contact, affectionate so no huge indications. A little slow with milestones but still sort of within normal range. Speech delayed (you'd never bloody know it now)! I just looked in her eyes one day when she was tiny and knew.
Her behaviour changed at around 18 months/2 years. Screaming night terrors and tantrums could be written off as normal for that age. As could obsessions over certain likes/dislikes. But at age 3.5-4 when childcare professionals at her nursery started to tell me they suspected SEN, specifically ASD, I was entirely unsurprised.

Her school got the ball rolling with assessment when she was in reception and she was diagnosed in January this year at 5 years and 8 months old. Now 6 and a half she is thriving, above average academically and has many lovely friends. (Although we've been told the preteen years may be more difficult). She is high functioning and her autism manifests in anxiety attacks (full on histrionics at times) and rigidity (fear of change). She has control issues but if she's pre-warned and bargained with she is better. She's lovely bless her. But I just knew early doors and I don't know why...

@gunpowdergelatine Definitely mention it to gp that you are concerned about the speech, they usually do a hearing test when that is mentioned.

Weirdly or not, quite a lot of children that go through the non NT diagnosis channels have hearing issues...

From birth really. He would regularly stay awake for 19/20 hours in 24, most of them screaming. He was constantly moving, arms, legs body always flailing and was rolling both ways by about 10/12 weeks old. Wanted to be held but not cuddled, was late to smile and impossible to get to laugh. He would need constant bouncing and rocking. Impossible to wean into solids. Didn’t and still doesn’t play with toys. Was diagnosed with ASD just after his 8th birthday (despite being in the ‘system’ from 2!)

A few weeks old, forth child and therewas something very different. Confirmed at 9/12//18 months. Provisional ASD diagnosis at 4 and confirmed at 7.

I would go to your health visitor first.

That's what we did. The health visitor referred.to the paediatritian who diagnosed him.

He was about 15months the first time I said I thought something was wrong.

He is 5 now and at a special school

I had an inkling when dd was 2 she to sensory issues, thought something was definitely different when she was 6 or 7. Got a diagnsis of autism at age 16. Took so long because her behaviour was so good at school and i hadn't heard of masking. She fell to pieces at high school so we started the process.

@OldBrownShoe - the actual ASD assessing took about 2 years in total. Here you’re diagnosed using a team of professionals and a diagnostic testing. (It can vary from area to area)

Was under speech therapy from 2, and I asked them time and time again for an assessment. I was assured everything we were experiencing was normal.

We were eventually referred to the diagnostic team after a lot of backwards and forwardsing, some parenting classes and lots of doubting our own ability, and basically surviving.

My son is high functioning but was diagnosed immediately following assessments, as it’s glaringly obvious if you know what you’re looking at. So it wasn’t a difficult case or an odd presentation.

From the moment ds was born, but everyone told me he was fine, it was just his tricky birth...just his breathing....just that he was lazy....just that he has reflux....just that he's boy....just that I was neurotic...just that he lets his sister's do everything for him....just...

Then at a baby massage group, when he was 10 months old, he lay like newborn amongst babies half his age who were wriggling and trying to flip over like fishes. The Health Visitor there said she would like to do a Schedule of Growing Skills (SOGs...my first in a long line of acronyms). She came to the house and played with ds, and asked us questions whilst ds lay there placid and still...."no he isn't sitting yet"...."no he doesn't babble"..."he can only eat purees, but screams all the time we try to feed him..."sleep...no, he doesn't do that" She may as well have asked if ds was doing Chinese algebra yet.

Years of testing, and SALT and portage and genetic studies and OT and physio and MRIs and EEGs and medication and EHCPs and on and on. This year, at 8, ds was diagnosed with a rare genetic syndrome, and it has been like being handed a torch.

Thank you @Oopsusernamealreadytaken

At the minute it’s like the professionals are the only ones who believe me.
Dp is in denial - he thinks it all down to my anxiety, yet ds is his first child (my third) so he doesn’t see the differences.

Ds was hitting all his milestones early - he was walking at 11 months and babbling/trying to say words then it all just stopped.

We have a language and play worker that comes to see him once a week (we tried the group but ds got so distressed if wasn’t really in anyone’s interests to continue going) so I really feel supported by everyone except dp.

I really, genuinely hope that it is my anxiety and that there’s nothing ‘wrong’ but I know deep down he’s not typical. He doesn’t understand general things - I could ask him where is your juice and he will be standing right next to it but not acknowledge it at all. I know he doesn’t hve the ability to be ignorant, which is what dp puts it down to, and although I’ve accepted an audiology appointment I don’t think his hearing is affected as he responds to certain words like milk, dinnertime, bedtime, bathtime.
I really hoped that early intervention would give me the tools to help ds. I know he’s the same baby and I love him so much but my hearts breaking that he might not understand that I love him.

Sorry I’m Waffling on but I really don’t understand much at all about asd and I’m struggling a bit.

Sorry OP for posting my problems on your thread

My son has SPD and possible high functioning ASD.
Frequent meltdowns, complete fear of food (we have under ten safe foods he can eat), gets overwhelmed easily, won't sleep on his own, extremely intelligent for his age, won't have his haircut and hates it being washed, won't have his nails clipped, extremely sensory seeking. This started at 18 months old. Good luck OP.

@OldBrownShoe

My son was very quick to talk and read and this masked some of his problems as far as education professionals were concerned - he actually taught himself to read using the subtitle function on the TV and could do it pretty fluently by the age of 3. Subsequently he was never below average at school, which means schools won’t pay for educational psychologist assessment.
In the end I went to the GP and insisted on a parent initiated referral - it still took two referrals to CAMHS (the first time they just did some talking therapy type stuff and discharged him) before he actually had psychometric tests - these showed he was clearly ASD and at the autistic level in some areas (recognising facial expressions was one, off the top of my head).

This is all some years ago, he’s 18 now, and he was my first and my mum died when he was a toddler so I didn’t have the experience to recognise the signs.

Regarding your child’s issue with certain shops - my son couldn’t tolerate an aging strip bulb when he was younger - swore he could ‘hear’ them - maybe your local Wilko and the Works are due new light bulbs?

The ABSOLUTE best thing we ever got post referral was a course for parents run by occupational therapists - it really helped me understand (and therefore tolerate!) my boys sensory issues. Obviously everything varies from area to area but I would very much recommend it to any parents of ASD and/or ADHD kids, if available.

The first documented concerns I expressed to a healthcare professional was at 4 weeks.
He never slept - he’d be awake 22 hours out of 24, he didn’t like to be held, he gave no eye contact at all.
As he grew, slow to meet milestones, didn’t copy things eg didn’t wave bye bye, didn’t join in with nursery rhymes eg twinkle twinkle by making stars with his hands, the older he got he became aggressive.
Referred at 3, diagnosed aged 4.
Before then I just got told he was a boy, he was pre-term, this was normal etc.