Here some suggested organisations that offer expert advice on SN.

If you think your child has a developmental delay or disorder you are more than likely right

(22 Posts)
PolterGoose Thu 14-Nov-13 17:05:19

Was just pootling around on the interweb and came across this little snippet in the US Centre for Disease Control and Prevention, link here, it's near the bottom of the page.

Fact
Parents’ concerns are generally valid and are predictive of developmental delays. Research has shown that parental concerns detect 70% to 80% of children with disabilities.

Sadly, it doesn't surprise me. Might surprise some of the gatekeepers who can make it so hard for us to get our children properly assessed.

Doesn't surprise me either. I knew with DD from when she was about 6 weeks to be honest.

If I had a £ for every time I heard 'she'll get there in the end' I could now afford all the therapy she needs but that the NHS don't supply grin.

To be fair I did have a few professionals say that they take parental concerns seriously, but there was little they could do until she really did miss milestones. Not much to be done with an 18 moth old who shouldn't be talking anyway.

salondon Thu 14-Nov-13 18:06:25

The wait and watch approach must cost the govt and the society so much more than early intervention would. Even if a few kids get wrongly diagnosed, the extra therapy they would get as a result of that will only help not hinder them.

What's even more frustrating is that these 'professionals' make it even harder for parents who are in doubt. My husband was in denial for 3 years and I was doubting my own judgement. It's the professionals who made it worse by telling me that it's just a delay and she needs time.

I really think they should start diagnosing at 18 mths not at 3(for obvious cases I mean).

babiki Thu 14-Nov-13 18:14:10

Of course they would save on early intervention, why can't they lesrn from other countries which do better?

I know somebody who has been reported to Social Services because she used physio therapy not usually used in UK ( but in many other countries for decades) which is apparently 'controversial'. Well everything must seem controversial next to the NHS physio..

chocnomore Thu 14-Nov-13 18:14:23

well, I suppose it is much cheaper to label the mum as paranoid and refuse help/support/intervention for as long as possible.

I raised concerns about minichoc at 14/15 months. it took more than 20 months of fighting to get a referral. Dd has now a dx of severe asd and severe s&l delay/disorder [hm]

MabelBee Thu 14-Nov-13 18:16:58

Does no-one in the UK get a diagnosis before 3? Ever?

AmberLeaf Thu 14-Nov-13 18:17:42

That certainly reflects my experience and those of other parents I know in similar situations.

Took me years to be properly listened to, thankfully my sons current school had open ears and a fab SENCO and teachers. Shouldn't have taken that long though.

AmberLeaf Thu 14-Nov-13 18:18:16

My son was diagnosed at 8.

MabelBee Thu 14-Nov-13 18:21:12

Can I ask at what age you started the process Amber?

chocnomore Thu 14-Nov-13 18:22:04

mabelbee, I think there some mums with children on this board who were dx beforw 3. but often, you will struggle to get even a referral before the child turns three. even when the child does understand only very little and has only a handful of words (at least this was our experience and I know this is not uncommon).

PolterGoose Thu 14-Nov-13 18:36:42

My ds was diagnosed at 6 which I think is quite young for an Aspergers dx, but his teachers, family, the first paed we saw were all convinced he wasn't on the spectrum. It was glaringly obvious to me (and our HV thankfully, she was amazing).

I just found the statistic interesting because so many of us on here have such a battle to get professionals to see what we see.

MabelBee Thu 14-Nov-13 18:55:30

I don't think I can wait 6 years. I'll stop hijacking this thread now but that is very disheartening. I should probably start my own thread because now I have a million questions.

autumnsmum Thu 14-Nov-13 19:01:46

Mabel my dd2 was diagnosed with autism aged 2 years and ten months

ouryve Thu 14-Nov-13 19:03:31

DS2 entered the diagnostic process at 21 months and got a diagnosis at 28 months, mabel

I think 3 is significant because that's when most children start nursery. It was definitely seeing him in a nursery setting that made me push for a referral for DS1, with the support of the EYFS manager. Up until then, I'd been offered parenting strategies and "help with setting boundaries" and the HV had been kind enough to come to our house to weigh baby DS2 because I couldn't manage to undress DS2, to be weighed AND stop DS1 from running away or tipping up the precariously placed cups of coffee that were lying around in the room used as a weighing clinic. Having someone say "Yve, why on earth hasn't he been referred, yet?" was quite refreshing.

AmberLeaf Thu 14-Nov-13 19:32:06

MabelBee

My son was first referred to SALT at 3.

He didn't see them until he was 5 [waiting lists]

They signed him off because he was 'bright' hmm

His school adapted his education to accomodate his 'cleverness' as he was significantly ahead of his classmates. [that sounds mug but it isn't meant to, can't think how else to word it]

Then we moved and his next school actually laughed at me when I said I had concerns about him. No help there.

We moved again and his next and current school were excellent, I approached them [he was 7 by this time] and they agreed with me and set the ball rolling.

I think it was about a year from then to diagnosis, but that involved waiting to have a SALT come to see him at school then referral to community Paed. We were lucky as we got a cancellation and only waited about 6 months to see the paed rather than the predicted 18 months.

Also lucky that his school is very good and didn't wait for his diagnosis to start implementing strategies in the class room.

I knew there was something 'up' from early on and it should have been done before he was 8, but all said, he is doing ok now.

AmberLeaf Thu 14-Nov-13 19:34:17

mug = smug sorry my typing is shit today!

Don't be disheartened Mabel. Arm yourself with knowledge from here, if you know what to expect I think it is easier.

I didn't have Mumsnet back then, wish I did as Id have known what to do when I kept hitting brick walls.

googlyeyes Thu 14-Nov-13 20:19:05

Ds1 was diagnosed at 23 months, after I raised concerns from around 15 months. Roughly 10 different professionals told me to stop being so ridiculous though. And my MIL is a whole other story.

He was only referred in the end to shut me up, not because they thought anything was wrong

2boysnamedR Thu 14-Nov-13 20:31:02

Well I raised concerns at 18 months. In the system at 2 and first appointment was 2.5 and I still have nothing at all to show for it.

It dawned on me last night I could have got a phd and diagnosed him myself in that time sad

Ds is 6 now

2boysnamedR Thu 14-Nov-13 20:32:18

It's the wasted years that upset me. Such a pointless waste

Ineedmorepatience Thu 14-Nov-13 20:35:45

Too true sadly 2boys.

I have also had a similar experience to others I raised my first concern about Dd3 when she was 2 and was told by the HV that I worried too much.

I triggered formal assessments at 5.5 by reqesting a referral from my GP and Dd3 was diagnosed with Asd on her 9th birthday.

Far too long and I was doubted far too many times sad

salondon Thu 14-Nov-13 22:40:55

If you go private, you can get a diagnosis by 2.5. In US they diagnose as early as 18 mths. I knew something was wrong by her 1st birthday.

MabelBee Fri 15-Nov-13 03:50:31

I'm less than a year into the process and already it feels too long. I can't imagine how that must for you who have waited 6, 8, 9 years. It sounds so frustrating!

I got the condescending pat on the head from the community paed at our first appointment, was told to relax and enjoy her while she was young because it goes so fast. At our second appointment I took my husband along, who didn't even have to speak. He just sat in the room, nodding in agreement while I said exactly the same things, and the reaction from the paed was like night and day. Can't be an hysterical mother anymore, apparently. It was a tip I read online somewhere. Was pretty shocked that we are enough in the dark ages for it to have worked.

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