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When did u know??

(35 Posts)
lisad123 Tue 27-Sep-11 00:36:58

seen a few threads on behavioural threads with concerned parents of young children. I see most people reply "seems fine to me, relax" ect. Im never one to dismiss a concerned mummy, as they often know better.
BUT when did you notice and raise concerns??
I remember dd1 was very young, certainly under 2 years but i didnt get a dx for her till 5 years. I allowed health proffessionals to dismiss my concerns, even with her physical delays.
With dd2 i guess i buried my head in sand for a while, but then just before 2 years it became clear (with a little prod from my friend), and she got working dx at 2.6 and full dx at 3years.

keepingupwiththejoneses Tue 27-Sep-11 00:49:51

We knew something was wrong from about 3-4 months with ds3, yes I know it was early but as you say we just knew something wasn't right. It wasn't until 15-16 months that I noticed some definite ASD traits, he got dx at 3.3.

insanityscratching Tue 27-Sep-11 07:39:28

With ds I knew he was nothing like my others from his earliest days but the HV and GP thought I was neurotic.
I knew he had autism from about 18 months and at his first appointment with paed he said "so your GP thinks this is normal? (they implied I had Munchausens) I worry just how bad it's got to be before they refer on"
When he asked what I thought was wrong I said autism and he confirmed that he thought the same so from two and a half until his dx at three it was always autism that was spoken about nothing else.
With dd for the first 9 months I was convinced she was fine she was nothing like ds. I had a few warning bells ring when her first words were not what you'd expect and then at twelve months she lost all of her skills over the course of about four days and I knew it was autism.
The different GP referred her straight away and acknowledged it was probably autism. The paed ordered chromosome screens and metabolic disorders check but said it was to rule them out rather than because he thought it was anything other than autism so from 17months it was accepted it was autism and she was dx'ed a week after her second birthday.

StarlightMcKenzie Tue 27-Sep-11 09:07:11

It's hard isn't it? I mean on those threads. You don't want to jump in all scare-mongering, but on the other hand when you have been through the continuous dismissal, you don't want others to have to go through the same.

Signs were there from before a year old with ds. I KNEW something was up, but was encouraged to put it down to 'individuality' or personality or something. I was only ever referred to a paed to 'put my mind at rest' because the HV was sick of me banging on about it.

I really WAS a neurotic parent, because I KNEW something was going on, but couldn't put my finger on it, so was at the clinic every few weeks with 'something' be it a rash, tic, strange walking, slightly odd neck movements etc etc.

They were so fed up of me in the end I got my referral. I was expecting a diagnosis of neurotic parent, but the paed was in no doubt and gave him a working diagnosis.

I see now that my frequent visits to the HV was just because I was finding ds SO hard and trying desperately, graspint at straws, for an explanation.

Lougle Tue 27-Sep-11 09:37:39

I agree, it is hard. Did I 'know'? No. I was a new parent to a PFB. Did I know enough about children to 'know' that this wasn't what I thought it would be? Certainly. Did I suspect that it wasn't all quite right? For sure.

When?
The day she was born, when they found she had a positional talipe of her left foot. They said it was normal, and physio would contact.

The day she was born, when they wouldn't let me go home until a senior paed had checked her over, because a junior doctor finally admitted to me (after me saying 'there is SOMETHING wrong, what aren't you telling me????) that a midwife thought she 'looked like she had Downs Syndrome'. . He said she was fine (he had just come from a major car accident involving children. I wonder if he would have been more cautious if his mind hadn't been on the children he'd admitted to ICU?).

The night she was born, and the next 12 weeks, when she screamed ALL NIGHT LONG from 10 until 6, only pausing if we smacked her so hard on the back that it seemed like child abuse.

The weeks after birth when she would puke half her feed up every feed, and I got to the point when I only changed my top if I'd been puked on 4 times.

At her 8 month check, when I said that her sounds didn't seem like I expected them to, and that she didn't respond to noises as I expected (she would be acutely alert to quiet distant sounds, like a door opening quietly, but completely ignore a plane, hoover, dog barking, etc.).

At 13 months when she still couldn't pull herself to stand, despite trying.

At 15 months when she could pull herself to stand, but her foot splayed outwards.

At 17 months, when she tried to cruise but couldn't. She saw a physio, who put her on 3 month recall.

At 20 months when I begged DH to take her home after he'd brought her in to see newborn prem DD2 in hospital. The final straw was when she started to climb in the crib, after crawling under lots of pregnant women's curtains.

At 20 months when I trekked across the hospital from my room, leaving prem DD2 with DH, while I went across to physio with DD1. They discharged her as 'just late, but normal'.

At 23 months when we spent DAYS trying to get her to walk between us. She finally did, then the next day walked over a mile, refusing to rest.

At 2 when I used to have to take a stairgate with me to visit afriend. Used to have to say 'please remove any shampoo, conditioner, washing up liquid, toothpaste, etc., from low surfaces.'

At 2 when I couldn't take her out without a wrist strap, because she just COULD NOT stay for even a second beside me. Not normal toddler stuff, just rampant chaos.

At 2.3 when I had to abandon DD2 on a change mat, yelling to the HV 'keep an eye on her please!!!' as I bolted after DD1 who had escaped yet again from the clinic room.

At 2.6 when she used to kiss bins on the way home from pre-school, and the journey home took us 45 minutes when everyone else was home within 20.

FINALLY

At 2.9 when the pre-school asked to get someone in to observe her, and that person recommended 1:1 support.

At 2.10 when she started falling over for no reason at all. That day she went to hospital, and stayed over night. That day we saw a senior registrar, at 9pm, and he uttered the words 'I think you'll be seeing a lot of us....'

At 2.10 when we met 3 different Consultants, and our Paed took her on as 'his patient'.

At 2.10 when we left the hospital for appointments for EEG, ECG, 24 hour tape, CT scan, etc.

At 3.0 when her EEG results showed epilepsy.

At 3.5 when her MRI results showed a brain malformation.

How a child who needs special school education gets to 2.9 before they are even flagged for investigation is beyond me. The signs were there. Perhaps, they wouldn't have found anything if they had investigated at birth. But, perhaps, if the Paed who said 'not Downs' had said 'mmm but experienced midwife says she has dysmorphic features...perhaps we need to look closer', then she may have had more support than she did from an earlier age.

Chundle Tue 27-Sep-11 09:39:27

With dd1 from about 3 I knew there was something up when she up to antics at nursery she got ADHD dx at 6. With dd2 she howled from birth and I knew that there was just something not right and we were referred to CDC at 9 months and it's still ongoing and relentless at 2 years

ineedstrongcoffee Tue 27-Sep-11 09:44:15

I knew all was not right at about 2 and a half to 3 but i was in such denial god forbid anyone who tried to point his strange ways out to me.
If nobody mentioned it it just wasnt happening.with just 1 look round school visit and a heartbreaking meeting with the HT he was wisked through the assessment process and autism was diagnosed.God how i hated that HT who dare to tell me to my face what everone was probably saying behind my back.
But gosh how opinions soon change,now i cant thank that lady enough,our whole family life is so much happier,and i wish i had met that HT much earlier in my sons life.

borderslass Tue 27-Sep-11 09:48:53

I knew with DS [17] at about 20 months when he stopped doing things, by the age of 2.6 DD2 [nearly 16] had overtaken him we got a severe ADHD dx at 6 always queried autism with mild ADHD but was dismissed he went to a ASD based high school due to EP believing he had autism. He has been under adult services for 18 months and his Dr was disgusted with his treatment under CAMHS as there answer to everything was to up the medication despite us voicing concerns. We have his first proper assessment by the autism team in 5 weeks they are coming to see us to take a full history from pregnancy to now. Dr has said it is 99% certain though.

graciousenid Tue 27-Sep-11 10:07:56

we started 'interventions' with ds when he was 2.5 & he was diagnosed at 3.

I was concerned about his speech delay when he was two BUT he'd been really ill in the 2 months before, my dd1 was speech delayed & caught up without any help and he seemed to be okay in every other way. It was only in the couple of months after that - after we'd tried to move the speech along with no success - that I started to actively worry & got SALT & portage referrals. When they had no effect & he started losing skills I became very very very worried & we got private SALT, did Hanen, signing, went to BIBIC, started ABA & got paed referral. Couple of months later he was diagnosed.

I had no concerns at all before he was 18 months old, he developed absolutely typically. Even up until 2years he was doing okay - only with hindsight can I see small issues but the could easily have turned out to be nothing at all.

Becaroooo Tue 27-Sep-11 10:08:56

Always known.

Always.

Allowed MWs, Paeds, GPs, HVs, teachers and family to make me doubt myself and because of that I failed my son.

Not any more.

<<be afraid, be very afraid!!>>

graciousenid Tue 27-Sep-11 10:16:14

ds2 is three months old & he is exactly like ds1 was at that age - happy, smiley, sociable, engaged, coos & gurgles, hitting his milestones appropriately, growing well, feeding well, sleeping well.

Silly HV who I won't see any more mentioned a 2yo development check for him & was shocked when I said I'd all ready arranged for ds1's paed to see him at 18 months - but why? ... because he has a 1:3 chance of developing autism ... surely not! He's fine! Look how happy & smiley & interactive he is! Yup, exactly like ds1.

chocjunkie Tue 27-Sep-11 10:26:14

not sure when I knew for sure but I had this nagging feeling something was not right from 14/15 month onwards... GP and HV fobbed me off until DD was 3.0 (despite severely delayed language and loads of other things). DD is now 3.8, still no dx. her speech and language are about 2 years behind. she has load of other ASD traits... when she is among a group of peers she sticks out like a sour thumb. absolutely no idea how it was possible to dismiss my concerns about her until she turned 3 angry

lougle, your story is just shock

lisad123 Tue 27-Sep-11 10:42:50

Lougle, wow that sounds like my dd1!!

She had club foot, never crawled, sat up finally at 10 months but didnt walk till passed two. We are seeing genetics team too and he did ask if she's ever had brain scan, as she has very tight tendons with some some of "catch" hmm
I'm so mad that they take so long, and dismiss so many parents. I'm very glad they didn't dismiss me with dd2 but think they knew me well enough by then. Sadly think it helped most knew me as a professional too, so it helped aloyblush

tabulahrasa Tue 27-Sep-11 10:57:44

Honestly? He was nearly 7...

I knew from very early on that there was an issue with his speech, I took him back to the HV for that again and again until she finally referred me to SALT - just to make me go away I think, lol, he was 2 and a half at that point.

Other than that, well I knew he was a bit immature, emotionally and socially - but it didn't really occur to me that it was anything other than the speech disorder, I had the odd little thing that niggled, but not enough to do anything other than discuss it with a friend.

I had DD when he was 4, she was really different to how he had been, but again I didn't think anything of it.

Nursery raised concerns about his pencil grip, school then raised them again and wanted to refer him to OT.

When the school doctor discussed that with me, she asked if she could send a referral to the autistic assessment clinic - my exact words were, refer him if you want, but he's not autistic. <does a sad little smile at remembering that> I had experience of children with autism, I thought I knew what it was.

I went home, googled and found things about Asperger's - I was bloody devastated, lol.

At that point DD was 2 and a half and over the next year or so it became startlingly obvious just how different DS had been.

Now, knowing what I know about autism, there's no way in the world I could miss it in DS and I facepalm at some of the things I didn't think were atypical, but at the time I was completely oblivious.

we then went through 6 years of assessment where everyone agreed that there was something needing diagnosed, but because it was complicated by his speech he wasn't diagnosed with AS officially until he was 13.

ArthurPewty Tue 27-Sep-11 11:08:32

Message withdrawn at poster's request.

Dawndonna Tue 27-Sep-11 11:16:59

With Dd1, at about three months.
I love Great Ormond Street. We finally got there at two. Still not walking, talking etc.
The Paediatrician we saw there telephoned the consultant at my local hospital whilst I was still in his office. "I've got your neurotic mother here, (he'd actually written that in his letter), I can confirm that Dd1 has a form of cerebral palsy and is on the Autistic Spectrum, would you change your notes please"
Then he winked at me.
Love him.

Dawndonna Tue 27-Sep-11 11:19:10

As for the other two, suspected with Ds2 around three, got a diagnosis at seven. They gave Dd2 the same diagnosis (Asperger Syndrome) etc, about a month later, so she would have been about 5. DH got his diagnosis six months later!

lisad123 Tue 27-Sep-11 11:23:12

dawndonna thats shocking!! but LOL at GOSH doc grin

chickensaresafehere Tue 27-Sep-11 11:26:09

At about 16 months,
no baby babble,crawled but no attempt to pull herself up on furniture & drbbled constantly.
Went to see my GP who was wonderful(had seen me through PND with dd1),he immediately referred her to hospital,where the cons paed was great,but felt we have gone downhill from there,as 3 years on we still have no dx!!!

akaemmafrost Tue 27-Sep-11 12:00:47

At a couple of months old I noticed that ds didn't make eye contact with me. I would move him around until he looked at me and then keep moving him to keep him maintaining eye contact. The Developmental Paed said later that had been a good thing and I had been practicing early intervention. I didn't know I was though. I thought the Big A word (autism) at that time but then everything seemed ok and it didn't come up again until he started nursery at just turned 3.

He also had speech delay and when he did speak it was just reams and reams of echolalia. We all thought he was so clever though being able to remember so much sad we were clueless. Blimey I am welling up just thinking back to those times.

The night before he went for his first day at nursery I stayed up all night crying, not sobbing, just quiet tears because I knew he wasn't going to fit in, I knew he wasn't "ready". Within three weeks they called me in and said the wanted to get a Paediatrician to look at him as they were worried he had a Social Communication Disorder. I didn't know what THAT meant so I came home and googled it, there is was, Autism. She came and observed him and told us to refer via GP as she had "concerns". ExH wanker immediately pulled him out of the nursery and said he should go elsewhere and see how he got on there. I knew the day she said that me that he had it but no-one else believed me, family etc, Ex H, when I tried to discuss my concerns with him told me "you have that Munchausens by proxy, you WANT him to have it so that YOU can get lots of attention from Doctors". My OWN H said this to me.

Within weeks at new nursery, concerns were raised there too and ex H pulled him out of there too, making me promise I would not go to GP for at least a year so we could give him time to come on. It was an awful, awful time. Then at the third nursery, within weeks it came up again, I overruled ex H despite great abuse and took him to GP. We had a diagnosis in 4 months.

Great, what a relief etc, now he can get help and so on. But it didn't work out like that. I knew, just knew there was something more. He couldn't ride a bike, still can't use a knife and fork aged 8, has the most horrendous tantrums and violent meltdowns, its the ASD everyone kept saying, he couldn't function in school. I kept pulling him out of school and back to GP for sick notes. Eventually one wonderful GP who I will always be grateful to said "I think there is something more, don't you? Lets refer him back to the Development Team". We went back and this week got diagnoses for Dyspraxia, Hypermobility - 7 out of 9 on the Beighton Scale and Sensory Processing Disorder on top of the ASD. I will be starting a thread about these new diagnoses because I don't know much about them. Finally everyone believes me, even ex H!!!!! but I have pretty much been on my own with it for nearly 5 years.

This is an essay, sorry but it helps to get it out. I am crying while I write this.

ouryve Tue 27-Sep-11 12:52:41

DS1 was born wired.Nothing was straightforward with him. We had constant nursing strikes, he turned my nipples to mincemeat, anyhow and took an eternity to nurse - just not very efficient at all. Despite poor head control (enough to worry the HV), he was crawling aorund on his belly by 4.5m and standing agaisnt the furniture at 7m - he couldn't even sit up unsupported, yet. he was extremely sensory seeking and insisted on being swaddled until 9 months, when we just had to go cold turkey with him because he was coming unwrapped and waking up cold - we moved him into a grobag, but he struggled with havign his arms free.

Getting him to sleep was always incredibly difficult, as was keeping him entertained. He had all sorts of little quirks at around a year old - he'd not eat unless the two digital clocks in the kitchen said exactly the same time and even though his language was slow to emerge, his first words were numbers and he could count to 10 before he was 2. He also learnt his letters by the time he was 2 and was reading and writing simple words ebfore he was 3. Things like this, the fact that he was stacking building blocks at his 9 month check and that he was re-enacting train crashes with his Thomas trains and lego at his 18 month check, had the HV convinced that he was OK, despite my concerns and family history.

It bacme really obvious when DS2 was born. DS1 refused to talk to me for days and refused to acknowledge DS2. We couldn't leave the 2 of them together without one of them at arm's reach because DS1 (2.5 at this point) would drop things on him, try to tip him out of whatever he was sleeping in and be not very gentle with him at all. I had to put DS1 in his high chair so i could change DS2 without things gettign tipped out and DS2 getting trampled and after a fiasco at the weighing clinic, where i simply couldn't manage both boys and some stupid senior nurse who was doing the recording sat there with her cup of tea, saying nothing until DS1 almost knocked it over, the HV agreed to come and do the weighings at home.

A few months later, we got a daycare place at the local school for DS1, a couple of afternoons a week and the EYFS leader was amazed that he wasn't already under paediatrician care - even though he never stopped chattering at home, he was a total whirlwind there and wouldn't speak to anyone. Even though it was autumn, he often end up outside, playing alone with the sand and water - it was the only time he was calm there. I'd decided that he was more than a spirited child and realised that he definitely had a lost of sensory issues which affected his behaviour. I spoke to the HV again and this time, got a referral. He was diagnosed with ASD and possible ADHD at 3.6 (and then given a firm diagnosis of ADHD by CAMHS when he was 6)

DS2 was a very placid baby. He nursed well, but hated having bare feet, even in summer. It took him longer than DS1 to gain head control, and he just cried if we tried tummy time (not helped by mild reflux). He was late to reach most motor milestones and just not interested in toys like DS1 was. He wasn't interested in weaning to solids until about 8 months and for ages, refused to even try finger foods because he wouldn't touch them. At about 16 months, I saw the HV because she was helping me with my first DLA application for DS1 and expressed my concerns about him not walking or talking and that he'd frequently learn a skill, use it a few times and then lose it again. He didn't walk until 20 months and still wasn't talking, so i asked the HV for a referral. The Paediatrician already knew him and knew of my concerns and he was diagnosed with ASD not long after his 3rd birthday.

signandsmile Tue 27-Sep-11 12:54:51

For us it was prob 14 months, I was saying "this isn't right"... had fab HV who arragned Ruth Griffiths assessment, and the professionals started to listen when those results were back... then 18 months of queue waiting, 'arse biting' aka being PITA parent. ADOS, and further ADOS review 6 months later and dx of ASD and LD, at just under 4.

joencaitlinsmum Tue 27-Sep-11 12:58:35

We didnt get our DX until May this year and my DS is 11, looking at all these threads I'm wondering how we all missed it for so long although he is high functioning and doesnt have some of the symptoms many of you have described.

For so long we believed he was himself with little foibles iykwim? Now the bits of the puzzle fit together going way back to when he was a baby and we have always lived with it and dealt with the problems when they came along as best as we could as his parents. I still feel guilty that as he has such a late dx that we have put him under under necessary suffering when we could have done things differently.

ouryve Tue 27-Sep-11 13:02:57

Sorry - not long after his 2nd birthday - 2y4m for DS2 - hate not being able to edit.

And ITA about that moment when a teacher voices concerns to you - in my case i wanted to kiss her because I then knew it wasn't just me being a lousy parent (though i was wondering how it ever was possible to be so relaxed around 2-3 year olds because DS1 was my only frame of reference at the time!) or just being an overcautious parent and that I hadn't been doing too much diagnosis by google.

maryellenwalton Tue 27-Sep-11 13:35:36

I had a nagging feeling from about 15months when I saw a developmental chart which said a child should have at least one word. I never, ever, ever considered autism though, had something much more benign in my head! The HV came round, muttered that she was a bit concerned about his lack of eye contact and then dropped the bomb as she walked out of the door, saying nonchalantly, 'it's a bit young to say autism for sure but I'll be back at 18 months'.

I thought she was preposterous, but started googling from then...only a few moments at a time as I started seeing things I didn't want to see, and I remember the panic in my chest being literally too much to bear. I wanted to run away from the hugeness of the word 'autism'...a bit like 'cancer', the ramifications were too immense, and I think I needed to absorb it slowly, and in bite sized chunks. Micro-sized chunks even.

He was diagnosed at 23 months, and by then I knew. 100%

For a while I still maintained that he had been completely 'normal' until about 10 months old (when, looking back at photos we noticed his eye contact had gone) but since having ds2, I can see that although he did have eye contact, and was incredibly happy and friendly...he didn't point (or follow a point), he never knew what to do with toys and most significantly, his receptive language was nil

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