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)

DD was born with problems which were diagnosed at 12 hours old but I first started thinking "these aren't resolving and she has other problems" when she was around 9 months old. It took over a year for anyone to listen though.

I thought when my son was 14 months old there was something a little different in his behaviour at 18 months I suspected autism. As he has always been an incredibly good speaker (could hold a conversation at 15 months) people told me not to be silly. The nursery realised at 4 he wa most likely autistic and he was diagnosed at 5 with autism and 6 with adhd. As I know have a second child I can see huge differences in how they behaved as toddlers (oldest never touched anything and hate toddler groups would scream, cry and lash out and youngest is into everything and loves toddlers group as he likes the noise and social interaction).

They absolutely shouldn't laugh at you. My dm knew there was something not quite right about my older sister's development when she was a baby. She had trouble using her left hand, she couldn't chew and swallow food at weaning age so was EBF until almost a year old, she dribbled constantly and was always soaked to her skin through her clothes. After regularly voicing her concerns, dm finally got someone to listen and st age 2 the HCPs investigated and dsis was found to have cerebral palsy. I think it unlikely that you would have your concerns dismissed in this day and age.

As an ex HV I think a parent’s instinct is key. It might be out of kilter but I would always take seriously a parent who said “I am worried because...”

My son is 15 and autistic, I think I always knew he wasn’t like other children but nobody addressed those issues except nursery. Looking back at his red book and his progress there a massive red flags which even as a health visitor I didn’t pick up....I guess I wasn’t looking for it. I just thought “okay he’s not talking but he’s doing other things”.

No, the doctors should not laugh at you. They might fob you off but just keep a diary or note of things for future reference because if your instinct is proved correct you then have a good history written down.

They shouldn't laugh at you. There range of typical development at 18 months is wide, the website www.talkingpoint.org.uk/ is a good resource for speech and communication. Do you have any contact with a Health Visitor? They can vary in helpfulness, but they may be able to do a mini assessment of her skills and some can refer on.

I’m currently going through this with ds (17 months)

Just after his 1st birthday I started noticing little things - not pointing or gesturing, not responding to his name (still doesn’t) doesn’t react to loud noises (sirens/phone ringing etc) It’s also really hard to get and keep his attention and get him to engage. Doesn’t want to play with me, uses my hands instead of his own. All little things on their own but add up to more. He’s still non verbal. He also hates all other people (including my mum/SIL) and certain places but haven’t quite figured out what it is that’s upsetting him (ie he loves Tesco and b&m but hates wilkos and the works)

I called the HV at about 14 months and she saw him at 15 months. Did an assessment and referred him for consideration to be seen by a paediatrician. Recently got the letter that he’s been accepted for review so just waiting on the appointment to come through.

He’s my third baby, second boy, and I just know somethings not quite ‘right’ iyswim

Go to the doctors, start a paper trail.

I've begun the referal process for my 7yo. I raised his speech when he was 2 and he just stagnated with aquiring language. Apparently low end of average at that point. By 3.5 he was sufficiently behind for SALT and caught up around the time he started school. We have opticians records about visual tracking and coloured overlays/ glasses help him read. He struggles with frustration and melts down and has since 10m. The terrible twos were terrible indeed and went on for years. He was awful to dress as a toddler, and seems to have sensory issues as he is pretty much phobic about trousers and long sleeves. I remember the lady in charge of the children's centres observing a session and being astounded by his attention span for a craft, working by himself for half an hour and she couldn't believe it when I said he was 3 next month as typical attention span was about a minute per year. Days after his 2nd birthday, he spent 2 hours crawling, pushing trains around his train track completely immersed with no deviation with his attention. Even as a baby, he seemed to study everything intently.

He has numerous relatives with a variety of neurodiverse conditions. I think he is quite highly functioning, and masks well (but it leaks out at home). I hope his needs can be identified because he has so many quirks, both of talents and difficulties. My hope is that some records of previous difficulties will support my concerns.

I think you have valid concerns. I would go to the GP, but before your appointment map out where you think your daughter is across developmental milestones. If you can show that she is behind in one, two or even more areas, it will help the GP identify if there is a problem and in what area.

Good luck! X

You can get the Age and Stages Questionnaire (ASQ) that the HVs use online, they do ones for different ages, I think they're 12 months, 24 months and 40 months but I've always found these useful to bring up problems I've been having with DDs development.

I don’t have a HV and she didn’t get a one year check as they no longer do them in our area. I have a doctors appointment tomorrow so will enquire. Thank you all.

I knew something wasn't quite right with DS from around 1yo and was certain of it by the time he was 2yo. I was fobbed off a lot, then as he got older and the gaps between him and his peers widened it became increasingly apparent that I was right. Looking back over his development, there were indications right from birth and now we know more about his diagnosis and his needs we can look back and go "so that's why he always did that!" or "that's why he loved/hated that!" and a lot of the things that stumped us when he was small now make sense.

Looking back we had differences from birth, poor latch, wasn't comforted by holding but as first time parents we didn't know better - her speech (or lack there of) though was the trigger at 2 for medical investigation, also had low tone, poor coordination (gross and fine) and poor interaction... yes she's autistic. On the positive she learned full speech around 4.5 and progressed well academically and is at university (always be positive, a sen diagnosis young just means you can intervene early not that they are really "bad")

They won't laugh at you, no. Perhaps try a home visit from the HV first, so it's less intimidating. It will be good practice for when you do see the GP.

I had an inkling when my DS1 was 6 months old. His attention flitted so often and he moved constantly. I'd always get comments of "he's such an active baby!" and it was impossible to take him places like cafes as he wouldn't stay in the high chair. He was diagnosed with ASD this year at age 5. There's still a question mark over ADHD but the paediatrician thinks the lack of attention is because he's so overwhelmed by the world all the time due to his sensory quirks.

Good luck in seeking help

I thought DS2 was quirky . He used to sniff his fingers over and over again, he had a shrill, deafening scream and would ask the same question over over again, as if he needed reassurance each time that he had heard you right. He was diagnosed with ADHD, OCD and anxiety at 7yrs.

My DS met pretty much all his milestones, but some unusual stuff cropped up: talking in full sentences before 2, knew all alphabet and sounds before 2 and repeated things he heard verbatim at times, very rigid obsessive interests took hold.

He wasn’t interested in other kids which became apparent around 18 months.

He didn’t point and had really severe sensory stuff which emerged around 18 months which led to a massively reduced diet which were only now starting to widen.

Saw SALT at 2, advised to watch and wait. I knew something wasn’t quite right and over time nursery and school started to identify things too. He had diagnosis of High Functioning Autism at around 5y 6m.

He’s actually doing very well, lots of people wouldn’t be able to tell easily but it becomes very apparent after some time spent with him.

@sugarinmyteaplease

Everyone else thought that about my son and told me I was paranoid but I just had a feeling.

I think we’re a bit unusual as my DS doesn’t appear (yet) to be more difficult than an NT child as we don’t have tantrums and meltdowns or any stimming and tics and this meant it took a bit longer to get the diagnosis.

Ds 1 - thought he was at 2. Then decided he probably wasn't. Just been Dx at 6. DS2 didn't think he was but became apparent when he started school something wasn't right and diagnosed at 5. In retrospect signs were there in both of them from about 9 months. Dd not diagnosed has traits is coping fine but suspect she may have more problems in secondary and need to look deeper then...

Merry -After he was diagnosed (following problems at school with behaviour) i joined all the dots together. The most frustrating thing is telling others about his symptoms and them arguing back, 'but that's just normal!'. The good news though is that he is 14yrs now and doing very well at school. He is now more aware of himself and conscious of his differences and starting to self manage. Medication also worked very well (although not perfect lots of challenges). frankly if he hadn't gone on medication i dont think he'd ave been able to access education in mainstream.

Trust your instincts.

See your gp, and stand your ground. Don’t be fobbed off - quite often a ‘wait and see’ holding pattern is initiated, but try to ensure you are in waiting lists for actual assessments, rather than waiting lists for eg parenting guidelines or similar.

Take a look at the M-CHAT test - it should be easily found by googling. If you can take that along and point out where there are areas for concern, you might be taken more seriously. It only takes 5 minutes to run through, and it is a screening tool for whether a child warrants further investigation.

I knew by 6 months old tha there was something seriously awry with dd1’s development. She was dx’d at 2.5 with severe ASD and learning difficulties. It took until she was 17months old for anyone to take me seriously as she was so young and they all took the ‘wait and see’ approach - it’s just lost time, tbh.

I knew with dd2 by the time she was 8 or 9 months old. Different kettle of fish entirely (no learning disabilities), but still not NT. She wasn’t dx’d until she was 7 (ASD) as she is so high functioning (and the testing system isn’t really great for catching girls, tbh).

Ds is the least affected by his ASD, and even with him it was crystal clear by the time he was 18 mo the old.

With my ds1 I had concerns from when he was about 4 months although professionals wouldn't take me seriously until he was 4 and he was finally diagnosed aged 9.

With my ds5 he was showing signs from just before birth. The paediatrician took me seriously when he was 4 months old (although everyone else apart from dh thought I was being paranoid) and now aged 4 he is finally being assessed.

My son was around 18 months to 2 years old when I first started feeling something wasn't right. But actually looking back some signs were there even earlier. He was eventually diagnosed with ADHD at 8.

Around 18 months ish

They won't laugh at you, when I had concerns about my son My HV said she had no concern even though I did. I then took a list of concerns written and some videos on my phone of behavioursto my GP expecting to be fobbed off, he was excellent he listened and referred to paeds. He was diagnosed with autism at 16 months. If I'm totally honest I had a feeling after he was born, he ever looked me in the eye while feeding, after he was born and out on my chest he cried and cried even the MW commented that it was unusual. I pushed it to the back of my mind. At ten months old when he didn't turn to his name bring called I knew. He's lush though and I love him more than words. Good luck OP trust that gut.

Around 10-12 months. She had huge feeding issues to the point that she wouldn't wean and had to be tube fed. She had a bad milk allergy as a baby which had caused her to be very ill so up until that point we thought her refusal to eat or drink was due to that. She also would scream uncontrollably at strip lighting aged about 1 which made going places very difficult as it would take sometimes hours to calm her down. Lastly she would never touch those touchy feely books. All this was aged around 1. I now have DD2 who is 13 Months and the difference between the two is enormous. Up until 2ish no one took me seriously. We eventually got a diagnosis of ASD the month that she turned 4.

For those of you that have a diagnoses- can I ask why it’s taken so long? Is it that you wasn’t listened to in the beginning or does it generally take years for them to do a complete assessment?

It’s taken 2 months so far from me raising my concerns, to the hv assessment, to her referring to ‘the board’ then them reviewing and agreeing a paediatric/referral is necessary.

Am I being naive to think it’s a simple process?

I’m worried that I don’t have the skills (for want of a better word) to help my son with his development if it turns out he does have Asd, or if there’s something different I should be doing in the meantime.