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6yo son ha had issues from birth, not getting better.

(13 Posts)
Schminders Sun 29-May-16 09:39:52

My son is 6 and for years I've know there's something not quite mainstream/normal about him.
He is extremely clever and well behaved (I'm quite strict) and has met all his milestones, however, ever since he was 6 months old I've had worries with him:

He never made eye contact as a baby (still doesn't) and I have to remind him to look at me when talking
He NEVER babbled like babies do and was always just extremely quiet.
He never seemed to need or want much sleep as a baby or now. Sleep is a major issue for us. He is well behaved and goes to bed great but seems to be distracted by everything/nothing (we have a great bedtime routine and do bedtime story - no screen time). He was up this morning after only having 8 hours and wakes everyone else up too (5am). He looks exhausted but never seems to be tired.
He is a very anxious child and seems to worry over the most bizarre things
He doesn't like to be touched or hugged much by anyone except parents - even grandparents!
He can't sit still, seriously, even at dinner time he waves an arm or 2 about or fidgets about on his seat - he seems unaware he does it, and unaware that he constantly makes noises too.
He can't be on his own, he can't even go upstairs without having someone be with him - even a younger sibling.
He can't talk to many people and meeting new people is awful and embarrassing. He seems to just make gestures and noises when people speak to him.
He seems to not understand about personal space and has always put things right in peoples face or stands too close and fidgets and touches people - I can see his peers noticing how annoying these things are now.
At school assemblies or anything where he has to sit or concentrate etc he fidgets with hands then just goes into this strange stare for the whole time, eyes fixed and glazed and mouthing hanging open.

Really I need some advice, since he was a baby I've been fobbed off with 'he'll grow out of it', 'it will change when he starts nursery/school'... It hasn't. If anything, being around his peers has just affirmed how different he is.
Dr I saw when he was 3 was just patronising about it so I'm really stuck as to where to go next.

I love him but he is just too challenging and needy and disturbing everyone's sleep has to change as I have 2 younger children who he constantly wakes.

Thanks

Juanbablo Sun 29-May-16 09:46:14

The first thing you need to do is get a referral to CAMHS. You can do this through the school SENCo or I believe the GP. It sounds as though you are wanting an ASD assessment? In our area there is a 2 year wait. But there are pre-diagnosis support charities which you should access, if it is agreed that an assessment is appropriate.

Ds1 has similar traits to your ds, particularly not wanting to be touched and not talking to new people, anxiety, fidgeting and sleep. Although sleep is a lot better now but that's probably because he's physically exhausted as he does lots of sport. He is awaiting both ADHD and ASD assessments. I am not very knowledgeable as we are not very far into the process but I will try to answer any questions you have.

ocelot41 Sun 29-May-16 09:46:22

I am no expert but didn't want to read and run. Sounds like this is really worrying you. What steps do you want to take about this? flowers

apple1992 Sun 29-May-16 09:48:00

Go to the GP again. Ask to be referred to paediatrics. You've taken their advice and the differences are still apparent so it's time to go back!

Schminders Sun 29-May-16 10:10:09

Thank you for the advice. I am going to contact the gp this week and now that I know what to ask for I will ask for a referral to CAMHS (what actually is this?).
I have no idea what steps I want/need to take - I just know he hasn't 'grown out of it' like everyone suggested, the problems have remained and are now more apparent and I just feel completely exhausted from having a challenging son for 6 years. I feel awful that my other kids are so disrupted by him but equally feel bad for him that he isn't 'enjoyed' by family as much as his siblings are. As he doesn't communicate properly or like hugs, he seems to be overlooked in favour of his siblings who are more carefree and confident in company.
Does this sound like ASD, ADHD?

Foogy Sun 29-May-16 10:15:37

CAMHS is Child and Adolescent Mental Health Services. All the best OP flowers

ocelot41 Sun 29-May-16 10:27:53

I have no idea - it does sound very tough for you and your family. I hope you find the guidance and support you deserve.flowers

apple1992 Sun 29-May-16 10:30:40

Sounds like ASD to me OP, but I'm not an expert.

LonnyVonnyWilsonFrickett Sun 29-May-16 10:34:15

My DS has ASD and some of those things are very familiar to me. The sleep thing is more common with ADHD, but you often find overlaps between the two conditions and also with DCD (developmental coordination delay, or dyspraxia).

I don't think you need CAHMS, I think you need a developmental peaditrician (sp) which you'd access through your GP. Be prepared to wait.

The one thing I would say, which is the one thing I wish someone had said to me (we waited 18 months for a diagnosis) is this: if you think your child has ASD or ADHD, get yourself informed about the conditions and start trying out the techniques and strategies. It can't hurt him, even if he turns out not to have it. But it could help enormously and it could help from now - you don't have to wait for a doctor to say 'try this', get reading and trying a few things yourself.

Schminders Sun 29-May-16 11:21:46

Thanks, I'll mention the paediatrician to the dr. We have private healthcare so as soon as we get a referral from our gp we can contact the private who will hopefully speed things along.
I had a look online a few weeks back to try and get some tips on dealing with his behaviour/issues but it was quite bamboozling as I didn't know what to be looking up - ADHD, ASD, visually over stimulated?! There was so much and I didn't want to self diagnose when I'm not a professional. If you think it sounds like ASD then that narrows it down and I can look for tips on how to handle his behaviour. As you say, it can't hurt. X

TheoriginalLEM Sun 29-May-16 11:37:03

no direct experience but he sounds a lot like my friends little boy. he is 10 now and she still hasn't got a diagnosis. not autistic not aspie. But there ARE issues. incredibly bright but socially inept. no eye contact. twitches. noises and lots of other issues. obsessive behaviour.

She has pushed for a diagnosis but to no avail. I think its harder when the child is brighter than average because the school are happy ifvthey achieve and not so interested if they don't struggle academically.

Its not about the label of diagnosis its about knowing how to best support her ds.

8 hours does seem like a reasonable amount of sleep though. Is he allowed to read at bedtime?

Schminders Sun 29-May-16 20:08:38

We used to let him read a book at bedtime, he would go to bed at 7:30/8 and we would then give him half an hour to read before settling down to sleep (this was in addition to a bedtime story from us). He would, most nights, get out of bed after finishing his book and wouldn't settle or fall asleep till 10ish. No books in bed means he just associates bed with sleep and he seems to fall asleep quicker.
He definitely doesn't sleep enough, you can see it on his face, dark circles under his eyes, yawning etc. he is obviously exhausted but he would never admit it and never sleeps in.

Schminders Sun 29-May-16 20:11:32

I agree, I think because he hasn't struggled with the 'academic' side of school that they are not concerned with anything else. He is very bright.

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