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What would you do if this was your child?

(18 Posts)
PhilPhilConnors Fri 05-Feb-16 17:17:36

Maybe not the best place to post, but I'm wanting some opinions if that's ok.

Ds3 is 5. He's a lovely little thing, usually well behaved, but we have a few concerns which I have contacted the GP about, who has sought advice from the paed, but we're not sure what to do now, if anything.

He has some sensory stuff going on - he's a terrible eater, doesn't like being messy, doesn't like loud noise, doesn't like smells, doesn't like certain fabrics (although all this stuff is fairly easy to deal with as we already do with ds2, and he gets upset and cries rather than having meltdowns)

He doesn't like change, likes things to be predictable, which at home is fine, ds2 has ASD so home life is fairly structured and predictable.

He gets very anxious about things which leads him to become very repetitive, asking the same questions over and over again. When this is particularly bad, he will do this from the moment he wakes up, until finally settling. He can get repetitive about "when's it lunchtime", and we have had success using sand timers.

His sleep is usually fine, but when anxious finds it difficult to settle, and will often be awake til 10pm. (Did this from the beginning of January until this week, those anxieties have settled so he's settling fairly well again).

He needs to know exactly when things are going to happen, you can't say "in a few minutes/hours/days" or it sets off the repetitive questions again. We have a 4 month planner on the fridge, and any events coming up have started drawing pictures so he can work out himself when something is happening, which to a certain extent stops the questions.

He worries about things that happen at school, has said that no-one plays with him, although it sounds like he's not playing because the others aren't doing what he wants to do. This week he is playing with someone because they're playing superheroes.

He takes ages to feel comfortable in new situations. He started nursery when he was three, but wouldn't speak, just sat with the teacher and either cried or looked very sad. We took him out after a few months and he went to a brilliant childminder who said that, given time to find places familiar, he really came out of his shell. If he goes to a party he doesn't join in, or it takes ages to warm up, unless everyone is familiar, then he's fine.

He chews his clothes, but apart from that nothing that I would say is unusual (and even clothes chewing isn't unusual).

No echolalia that I'm aware of, no vocal stims like his 2 brothers, no unusual hand movements.
He lined stuff up as a toddler, but doesn't anymore.

We are a family of people on the spectrum (I have AS, ds1 probably AS, ds2 HFA/PDA, dd has anxiety) so it's easy to miss what is normal behaviour, and what isn't.
I do think there's something, but it feels weird to say that when he's behaviourally ok.
He's very similar to his older brother who has had a private assessment that has identified ASD, OCD and anxiety.

We have books and things that we do that help, and maybe that's enough for him, and we just need to keep an eye on things, but I'm interested to know what others would do if this was their child, and if I'm overreacting by being concerned (which is possible).

I look back on ds1's school years and regret not pushing more for support, or for people to recognise that something was going wrong, and for that reason I'm swaying towards going to see the paed.
On the other hand though, ds3 is not ds1, in the right school with the right encouragement things may go very well and I would regret going through any assessments, which is swaying me towards leaving it.
So, confused and worrying that I'm either overreacting and making a mountain out of a molehill, or ignoring something that I should be dealing with.

PhilPhilConnors Fri 05-Feb-16 17:18:07

Bloody hell, that was long, sorry blush

birdlover1977 Fri 05-Feb-16 17:49:00

Sounds like you have a lot going on. I would always trust my instincts. If you feel that he may have ASD like his siblings then ask the G.P to refer him to a paedatrician for assessment.

I'm not sure why you would later regret 'going through assessments', either he has ASD and then he will hopefully be able to access more support at school or he doesn't and then he won't need extra support.

Perhaps I am very niave, but I really believe that being diagnosed as having ASD can only ever be a positive thing, because if a child does has ASD then chances are he would want to know why he finds social communication more difficult than his peers and he will most likely need reasonable adjustments to be made for him, both at home and school to make life more enjoyable.

Good Luck whatever you decide, but like I said trust your instincts and act on them. Best wishes

PhilPhilConnors Fri 05-Feb-16 18:04:56

Thanks bird.
I agree with you about diagnosis, far better to have one if he is ASD.
I'm not trusting my instincts at the moment though, and wondering if I'm doing too much symptom spotting instead of expecting him to get on with it and stop pandering to him (which some people think I'm doing).
And I don't know about ASD, there are definitely some boxes ticked, but some definitely not (but I know it's a spectrum and all people with ASD are different).
And I suppose my preconceptions about ASD (from what we go through with ds2) are that the child is difficult (that doesn't sound right, but not sure how else to put it), and ds3 was a very easy baby, an easy toddler, and easy child - until something stresses him out then he repeats himself and whinges non-stop. And discounting the sensory stuff. And need for routine. And dislike of change. Argh.

PolterGoose Fri 05-Feb-16 19:33:44

I'm going to repeat myself wink

I would imagine there's a cast difference in going through the assessment process at a stage where there are developmental anomalies as opposed to going through it because you've got a child in crisis. You and me have only done the latter. I would roll with the process, you already know what you're doing and that's going to massively aid your little ds's life and progress. It is far better to take this while its offered than risk having to do it because you have to. If a GP thinks there's enough then there's enough. But, as you know, I am very pro-assessment (and diagnosis where warranted) because it does make a difference. But I totally understand why you are wavering.

flowers

PolterGoose Fri 05-Feb-16 19:34:23

a vast difference

PhilPhilConnors Fri 05-Feb-16 20:21:41

Thanks Polter smile

At risk of sounding stupid, is it possible for a child to be autistic without the difficulties we have with ds2?
Compared to ds2 he's a walk in the park!

I think you're right as well, we're not at a point where we are desperate for this, so it might not be as stressful.

The GP trusts my judgement, so is happy to go with it. The paed has written to her saying it looks like definite sensory issues and some ASD traits. Ds didn't talk until he was 2, no words at all, although he did understand us. He was potty trained but then went backwards and it was then hard work, he was potty trained reliably by 4. He won't wee standing up ever, because he's worried he may poo - I suspect there's slight difficulty recognising a difference when he wees and poos (if that makes sense).
I think I'll ring the GP again next week. We can always see what the paed thinks and take it from there.

PolterGoose Fri 05-Feb-16 21:09:33

It's absolutely possible to be autistic without the difficulties you had with ds2, that's why so many children don't get diagnosed until later and then look at all us women getting diagnosed! Autism isn't a behavioural disorder and when needs are met there shouldn't be the extremes we've seen with your ds2 and my ds.

PhilPhilConnors Fri 05-Feb-16 21:45:24

Thank you (again!) flowers

birdlover1977 Fri 05-Feb-16 22:03:32

I couldn't agree more with the advice Polter has given you. I have 2 sons with autism, my 9 year old can have behavioural difficulties at school and is a pleasure at home, He wasn't diagnosed until age 9 because I wasn't certain that the problems he was having were not caused by school and the fact he is a very young summer baby. Whereas the 7 year old can be very challenging at home but is really well behaved at school. They are so different. It's hard to believe they have the same condition sometimes. That the spectrum of ASD I suppose, lol!

PhilPhilConnors Fri 05-Feb-16 22:59:45

Thanks bird. smile
Can't believe how varied it all is!

SparkleSoiree Fri 05-Feb-16 23:10:17

Wow, your lad sounds very much like my daughter and she was diagnosed with AS at 4yrs old.

If you suspect he is on the spectrum then investigate a potential diagnosis, it can only benefit him. smile

onlyoneboot Sat 06-Feb-16 08:40:59

Hi Phil, I'd say it's worth seeing the process through now it's started and see how it goes.

I waited a while to refer DS after DD1 and DD2 where diagnosed because he seemed perfectly happy but I'm glad I did because suddenly things went very wrong for him at school. I don't mean to be the voice of doom but you just don't know...

We're still waiting but given the family history he's been put directly forward for an ADOS assessment and it really will be a case of ticking boxes. But massively helpful for him toosmile

He's 10 and a very gentle, caring boy. I see a much more typically female presentation of AS in him. More implosion than explosion, if that's not too much of a generalisation.

Good luckflowers

PhilPhilConnors Sat 06-Feb-16 10:38:44

Thank you Sparkle and only, it's reassuring to read about other children like him.

Ineedmorepatience Sat 06-Feb-16 10:42:15

What they ^^ said!

Dd3 wasnt diagnosed until she was 9 and one placement had failed her!

With what you said in your OP, I would be requesting an assessment! Dont forget secondary school is a whole different ball game!

Good luck flowers

PhilPhilConnors Sat 06-Feb-16 10:51:10

That's the thing Ineed, I look at ds1 now and wish I'd pushed for investigations when he was younger. He'll be lucky to come out of school with any GCSEs at the rate he's going.
Things are easier since he had his assessment, and he knows we'll support him if he wants to go for full assessment.
We tried to flag up issues since he was 5, we don't want to make the same mistake again.

sh77 Sat 06-Feb-16 15:42:55

My ds is nearly 5 and was diagnosed with HFA. It has helped me enormously to understand him. Nursery and school, I feel, both thought/think I went OTT getting him assessed as lots of boys behave like him in class but my instincts were telling me something wasn't right. Some days I wonder if he really does have Hfa and then on others it's obvious. You will be able to work with your ds's school to get him the support he needs. Good luck.

PhilPhilConnors Sat 06-Feb-16 16:26:09

Thanks sh.

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