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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think DS2 is autistic and be worried about him?

15 replies

BlurryFace · 16/08/2017 10:59

DS2 is 2 and a half. He has been referred to OT and speech therapy for assessment and now been to both. The OT said that what really stood out in the forms I filled out and what she saw in his assessment is sensory problems.

He rocks against things with his back and head and twiddles his hair until its full of knots, scratches objects and licks things/people and she says that is him seeking stimulation. I feel bad as I have been telling him off for the licking - pretty gross to lick the dog, right? He also flaps his hands in an odd way - he keeps his arms down and swivels his wrists with his fingers extended.

He knows letters and numbers very well and is obsessed with them and books - he will spend ages looking through a grown up book with no pictures so he can look at the letters and feel the paper as he flips through it, he knows the whole alphabet song but sometimes chants "WXY and Z" by itself over and over and always seeks out the W X and Z letters in his foam bath shapes etc like they're his favourite ones.

DS2 is fearless, I keep him in the buggy more than I'd like because he fights so hard to run free even on reins and will throw himself face down on tarmac or try to lunge into the road and I have DS1 who is only 3 and a half to keep safe too. He doesn't worry about losing me or DH in a shop and will just run and run whereas DS1 would get alarmed if he can't see us in similar circumstances.

Sometimes noises upset him. I took the lads to a livestock show as some of the friendlier animals were tied up at posts to be stroked by children but we had to leave as the cows mooing sent DS2 hysterical, people were looking round in alarm to see the "hurt" child. He was also hysterical when he came in with me to fetch DS1 from playschool and the children were dancing to music on a fairly quiet CD boombox. Yet he doesn't mind the neighbour's parties or our music at home? Maybe because it's on home turf? In fact he loves some songs and has been singing tunes before he could talk? OT recommends ear defenders when out and about in noisy places.

The OT said on an arousal scale, low arousal is Eeyore, high arousal is Tigger and Pooh is a happy medium and while we all go between them most people stick at Pooh for most of the time but people like DS2 flip between Tigger and Eeyore and find it hard to stay at Pooh.

No one will say "autism" to me, but its all I can think of. Speech delay + sensory stuff = autism or something similar, right? I'm going to have to ring his playschool he starts in September, right? I feel so weird. I hated filling out forms about him like I was grassing him up or listing all his "defects" or something, I know its silly.

OP posts:
MrsOverTheRoad · 16/08/2017 11:03

This is all very stressful for you. Don't underestimate how much stress all this is causing you...and remember that if he IS autistic, he's still the same beautiful DS you've always had.

If you get a diagnoses, then it's purely to make sure he gets all the help he is entitled to and help to deal with things which he might find hard.

The song thing stood out to me as it's very like what my nephew went through with music...what we found out was that it was certain songs or melodies he couldn't cope with. Not the volume so much. I wonder what the song was at nursery?

Branleuse · 16/08/2017 11:04

I think it sounds like you might be right. Can you ask your go if there us a specialist HV who could advise you or refer him further for assessment?

MrsOverTheRoad · 16/08/2017 11:06

Or a developmental paed.

notapizzaeater · 16/08/2017 11:10

Ask your go to refer you for assessment.

How is he at nursery ? Is he the same with everyone else ?

He's still the same boy with or without the label :-)

FanjoForTheMammaries · 16/08/2017 11:12

This reply has been deleted

Message withdrawn at poster's request.

SumThucker · 16/08/2017 11:20

A diagnosis can be frightening, but at least you have an idea that's what it is Flowers

BlurryFace · 16/08/2017 11:45

Thanks for all the replies. I'm going to do some short posts instead of a long one as my phone keeps going loopy and reloading the page so I lose what I've typed.

OP posts:
BlurryFace · 16/08/2017 11:47

MrsOTR, I think the song was Head Shoulders Knees and Toes, which he's familiar with. Thinking on it though, when we play music at home it's always YouTube on the telly and he was ok when my friend played songs on YouTube at her house so maybe he finds it weird without familiar visual cues?

OP posts:
BlurryFace · 16/08/2017 11:51

I don't know about a specialist HV, it was the head HV who referred him to OT/speech therapy who work together. She did his 2 year check and saw him rocking and fail to engage/follow verbal directions.

OP posts:
BlurryFace · 16/08/2017 11:55

I should add this is not NHS, we are in the Channel Islands. I don't know what resources we have compared to you guys. DS1 has a mildish foot deformity that is being kept an eye on while they decide whether to operate (which he would be flown to the mainland for) or whether it will self correct. The paediatrician and his team comes over once or twice a year and sees all his cases in one go and flies back to England.

OP posts:
BlurryFace · 16/08/2017 12:04

I know he is the same boy with or without a diagnosis, I have said as much to DH who was sort of cross/in denial when DS2 was referred and I absolutely think this is for the best. I just feel guilty at agreeing there is something "off" I guess. And well meaning friends and family keep saying "it could just be quirkiness, everyone's different" which makes me feel bad for not agreeing.

OP posts:
BlurryFace · 16/08/2017 12:08

notapizza he doesn't go to nursery, though he starts playschool in Sept. I take him to softplay and toddler group though. He sometimes watches other children play but doesn't really try to join in unless it's just running round together.

He fights with DS1 something awful sometimes. He bites DS1, DH and me hard enough to instantly bruise if he gets angry. I worry about his behaviour at playschool. :(

OP posts:
MrsOverTheRoad · 16/08/2017 12:14

Don't beat yourself up....try to notice his moments of lashing out and what circumstances they're in. There might be a pattern of certain circumstance which set him off.

LoyaltyAndLobster · 16/08/2017 12:14

OP raise your concerns with the nursery, after all they are there to help, they may even be able to help with getting him a diagnosis.

Flowers
GreyBird84 · 16/08/2017 16:55

Going through similar DS is just 3.
Delayed speech, poor eye contact & verbal stemming. On tiptoes when excited.

We see paediatrician next month. He also starts play school next month. I have told them he is being referred for speech but my HV advised but to mention anything else to see how they feel about him ewithout any preconceptions which I guess makes sense.

I feel stupid - we really had no ide just thought his speech was delayed but would come on at playschool & his poor eye contact was when he was too busy playing or watching tv.

I know he's still the little boy we have always loved but it's just so hard & scary to think what lies ahead.

We had another little boy 3 months ago who almost died shortly after birth which has been so very hard on all the family. DH & I are both suffering depression & I am stressed with my anxiety through the roof which no doubt DS1 picks up on,

The verbal stemming is very difficult to listen too it really gets me down & is constant at home But he rarely does it when out but I can't be out of the house 24/7 just to not hear weeee & high pitches noises.

I worry about DS2 - all signs are gd at the minute that he is ok but who knows what lies ahead when you have been at deaths door. I'm struggling to cope with one child who is not nt - what if DS2 has problems down the line?

Sorry that was long but I really identify with how you feel. DH just gets cross & frustrated at the verbal stemming which stresses me out even more. I need peace & quiet & I never get any.

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