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Having a wobble about taking ds (5) to see the paediatrician.

(11 Posts)
PhilPhilConnors Mon 02-May-16 15:10:12

Sorry, I have posted about this before, just worrying that I'm being over dramatic about ds3, and would either like some reassurance that going is the right thing, or to tell me to get a grip and cancel it.

Ds1 and 2 both have ASD (ds2 diagnosed through NHS, ds1 through non-clinical assessment). I am also diagnosed ASD.

Ds3 is showing similar signs to ds1 and 2, but with added stuff on top.
He has sensory issues with noise, smells and food, and sometimes with light.
He took ages to settle in school, and is still very upset if there's any change to our morning routine (eg if ds2 has a meltdown, or if there's a trip)
He doesn't like change.
If we go somewhere unfamiliar he will need the loo very often, and will feel sick and have a sore throat (all signs for him that he's anxious).
When something goes wrong at school he worries and is very repetitive (will ask the same question over and over until after 10pm, it's very difficult to distract him and we've learnt that we can't reassure him when he's like this)

We have an appointment next week. He was referred in January when he was still very upset about school and being very repetitive, going to the loo every 10 minutes at school, repeatedly asking when it was home time, crying every lunch time and break time.

He has settled down from this. Our lives are generally very ASD friendly, which is definitely helping him.
He likes to know exactly when something is happening. He will count down to events on our calendar (if it's a big thing, he will count a few times a day).
He doesn't like change and will become very anxious and whiny if we have to do something unexpectedly. If we go out for a meal, he will feel (and look) poorly until we are there, then will enjoy it.
He doesn't have meltdowns (as we have with ds1 and 2), but will whinge and cry a lot, expect ally after school.
He thinks he is Spiderman or Peter Parker. Every day he will talk a lot about superheroes and how to make a spiderman costume. He watches certain DVDs over and over again (when allowed, he's not sitting in front of screens all day!) and say the lines as they are being said (but doesn't recite them when not watching, so I don't think it's echolalia)

During the school day I don't think he's crying as much, but things still bother him and he'll cry about them at home a lot.
If he goes to a party, if it's a big party with people he doesn't know, he'll sit with me, if it's a small group of familiar people, he's fine. If we go to a family party he is wary of some people, but will happily play with his cousins.
As a baby he was very placid, very cuddly with me, Dh and his sister and brothers, but not with anyone else (is still like this). He rarely cried (unlike now!)
He had no words until he was 2. He did understand us though.
He started at a nursery when he was 2 and was there 5 months, he never spoke and spent the time with the teacher being very quiet and miserable. He then started with a childminder who made sure they went to regular, familiar places and he formed a good bond with her and the other mindees (although he never liked contact and cuddles).
He has an amazing imagination, usually being spiderman, but this is when he's playing alone, or someone is playing on his terms. At school during play times he often says no-one will play with him, but it's usually a case of him not wanting to play others' games. He will play and engage fine during lessons (now he's settled in) and his teacher has no concerns at all.

He is not a difficult child, and if we didn't have his older brothers as comparison, we probably wouldn't have worried about these things, but assumed he would grow out of them.
If things are familiar and regular, he is fine.
We asked for a referral mainly because we didn't spot anything in ds1 and 2 (we have with hindsight), and both of them reached a crisis point where it was difficult to manage them, particularly ds2.

But I don't know if it's worth going down this route on a just in case basis, when Ds is generally happy and settled with the strategies we use at home.

Sorry for the long post!

PhilPhilConnors Mon 02-May-16 15:17:03

Sorry, bit more info!
He doesn't flap, his eye contact is fine.
He tends to be very strokey - strokes my arms with the back of his hand and with his lower arm.

PolterGoose Mon 02-May-16 15:36:47

I would keep in the system, better than risk reaching crisis. What will you lose by getting him assessed? Even if he doesn't meet diagnostic criteria at least you'll have some 'evidence' of his needs (cos, you know, what parents say is never enough).

PhilPhilConnors Mon 02-May-16 15:46:01

Thank you (again grin)
I'm worried that I'll get there and waste the paed's time, as on the whole Ds is happy and easygoing.
But then again, we know that we have to use various strategies to make sure that he's ok.

PolterGoose Mon 02-May-16 15:50:44

It's because you are so experienced at all this and your lives so well adapted that he's happy, and that's fab, but he isn't at home 24/7 or forever, and as we know, just knowing we are autistic is so important.

PhilPhilConnors Mon 02-May-16 15:55:11

Thank you flowers

AntiquityOverShares Mon 02-May-16 16:42:52

I'm not sure what there is in there that suggests you shouldn't keep the appointment? You have to use strategies, he dislikes and gets anxious about new things, he has obsessive and repetitive interests, has sensory issues and appears to have problems playing with his peers.

Given all those plus family history then surely you should have him seen?

PhilPhilConnors Mon 02-May-16 17:43:00

I'm being silly, I know!
When I list it like that it seems fairly obvious that there's something going on.
When his needs are met, he's happy and fine.
I think it's because I have ds2 to compare to (even though I know you should never compare). Ds2, even when his needs are met is incredibly hard work, very controlling and you can never switch off.
Ds3, when his needs are met, is very, very easy.

PhilPhilConnors Mon 02-May-16 17:44:09

When his needs are met and there's nothing out of the ordinary going on at school.

imip Mon 02-May-16 22:53:43

We are in very much the same position with dd4. What I don't want to happen is the same shit where people are telling me what I am doing wrong as a parent, rather than actually looking for ASD.

I briefly asked dd2's (ASD) clinical psych what she thought. As DD4 is under 5, she said we'd be told to come back in 6 months after our initial visit. It would be with the community pead, who initially put dd2's behaviour down to sibling jealousy hmm I'm seriously just not able to go down the same route. So we are waiting for 7 months, and then we can be referred to the same team at cahms who look after dd2.

Like you, if I didn't know about autism, I wouldn't suspect a thing. The only big clue for me is the social/communication issues. She has no friends. I didn't realise this. I thought it was me. I'm not friends with any of the mums at nursery, but I have 3 primary aged dds, and I'm usually rushing on school runs. At nursery parties though, I've realised dd doesn't interact with anyone, is desperately shy and averts eye contact. She's become a bit rough at home with cuddles, and since turning 3 has had massive sensory issues with clothes. To the point that nursery are calling us up on lack of socks/tights/coats. We've been down this path before. If a coat causes a meltdown and anxiety, I don't care, she's not going to die of cold.

Worryingly, she also is having some OCD signs just like dd2 does (dd2 is very popular though, so a very different presentation generally). I still wouldn't have called ASD if I hadn't already had a child diagnosed. In the meantime, we told nursery and I am asking her to observe her closely and report to us on all aspects of her interaction etc at nursery, I wish I had this for dd2, rather than believe that she was 'fine'.

PhilPhilConnors Tue 03-May-16 10:42:04

Imip, we had the blame when we went through the process with ds2. It was awful!

I think that's why I'm feeling weird about this now. We can see the same signs that we saw with ds2 and 3, with more on top.
He has friends in school, but they tend to be the ones who will play superhero games with him.
He has sensory issues with some clothes but not all, and we tend to choose clothes for him that are soft and we know he won't have an issue with.
At school he says he still doesn't like the noise, but he doesn't cry because he was sent into another room on his own with a TA until he stopped, so he puts up with it.
I know that he masks at school, because he's described the way he feels in his own worlds.
From our local cdc's point of view though, this will be seen as too sophisticated in a 5 yr old.

I haven't talked to school about this as they think ds2 is fine and I suspect his diagnosis is doubted.

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