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if DS seems fine sometimes, is he fine?

(10 Posts)
EineKleine Mon 16-Jan-17 11:26:57

We've wondered if DS might be showing some autistic tendencies for years. He is 8, Y3. You look at the checklists and he ticks quite a few of the boxes but some of it is so subjective. He is mega compliant at school and very very high ability in some areas so school think he is coping, but I think his background stress level is quite high and he constantly complains about not understanding tasks in class and playground issues.

I just don't know whether to ask for an ASD assessment. I don't want to waste precious resources. How do we know if his playground trouble is indicative of him not managing socially, or just normal ebb and flow, or other children's behaviour? I have no clue. We have been vacillating between thinking he is NT or possibly not for years. As soon as we do something about it, things calm down and we go back to thinking we are overanalysing. Things always change. I said to his teacher that he doesn't recognise when he is ill or cold, but literally in the last 2 days he has told me he has a cold AND that he felt cold. And after a few months of doing nothing but paper aeroplanes and ipad, he actually played with his sister over Christmas. I don't know what levels of single-mindedness and repetition occur in NT 8 year old boys' play - I would imagine quite a lot looking at their Match Attax collections etc. So do these changes mean he's no longer insensitive to illness or cold, and playing in an NT way? Have I just imagined the whole thing?

We can't wait and see forever, it's not fair on him, but I just wondered if anyone else has vacillated as we do, and what the outcome was for your children in getting diagnosed or not? My concern is he seems to be getting "worse" in some ways, like his eye contact when saying goodbye or thank you. Or maybe I'm totally overanalysing a totally NT little boy.

Msqueen33 Mon 16-Jan-17 14:04:44

That's tough. I have a dd the same age. Her younger siblings both have asd and so it's hard not to look especially when she's a bit immature, lively and a chatty box. She's also had issues in the playground. We also have difficulty understanding tasks in class. Her reported abilities have gone down between the end of year two and mid way through y3.

What do school think? I do think to a degree we all have quirky traits and some cope better than others with them. I struggled with difficulties but masked it. How does your son feel in general? My dd doesn't ever say she's cold or feels the cold.

Usernamealreadyexists Mon 16-Jan-17 14:14:02

Yes I go through days thinking I made a must getting DS's ASD diagnosis. There are days where he appears no different to other kids but on others is glaringly obvious how much he is struggling. The playground is a nightmare for him (although he loves being out there) and learns in a different way to how he is being taught. Ds also doesn't feel cold or pain to the extent other kids do. His behaviour after school is a great barometer to how his day at school has been. Recently, he has been agitated and defiant. It's becoming clear the school environment is very stressful for him even though he is in a small class.

Msqueen33 Mon 16-Jan-17 15:31:37

I'd push for a diagnosis. If not just for support but so he's given understanding and he can understand himself. I was diagnosed with a MH condition which is very close to as aspergers is which now I strongly suspect it is. Growing up was hard and I learnt to mask it. But it would have helped knowing I was different but not having a name for it.

zzzzz Mon 16-Jan-17 19:03:19

I find deficits are glaringly obvious at Birthday Parties. Manoeuvre so you help at someone else's and just watch.

Usernamealreadyexists Mon 16-Jan-17 21:54:02

Good point zzzzz.

Sorry for the typos in my post. "Mistake" not "must".

Mogtheanxiouscat Mon 16-Jan-17 22:30:52

I was like this with dd. I would say to dh after a particularly stressful period " she's not right, I'm going to the doctor". She would then always seem fine for a while, so I'd talk myself out of going. Eventually, I did when she 7. She's been in the system a year and it could be another year until we get a dx. They talk like she will definitely will get a dx.

I wish I'd gone sooner.

EineKleine Tue 17-Jan-17 00:02:36

Thank you everyone.

School reassure me that they don't need a diagnosis to give targetted support, and have listened when I've said stuff like they need to slow down and use fewer words when he is upset. They've murmured about coping at senior school, but they say he is doing better than he thinks. Junior school is definitely seeing more issues than infants but things have improved since Sept.

Re Birthday parties, I'll try that but it might be a while! New situations like new babysitter, summer camp, new football lesson tend to be where we think "it's so obvious! How could we have missed this?" But then another day he will reach some new milestone and we'll talk ourselves out of it. And overanxious parents overanalysing every move their child makes is definitely a thing.

Maybe we are destined to keep vacillating until we do something about it, so we may as well go for it now and give him the best chance for an earlier diagnosis IF he has ASD.

MrsMartinRohde Thu 19-Jan-17 12:07:37

I don't think you'll regret starting the ball rolling for assessment - it takes a while for appointments to come through anyway. If he has ASD, and he has times when he is managing life well, then great, but good days and bad days, you know what it's like.... and if this is what it is, knowing and getting stuff in place now rather than closer to high school time can only be a good thing.

I didn't as such vacillate - DS1 had always shown signs, IMO, but so far as I was aware at school, he was managing well enough, occasional behavioural issues and socially awkward/inept/immature, which was noticable, and also academically slow/behind, but we always accepted the reasoning that as an August boy he was always going to be a bit on the back foot, so to speak. At home it was always a different story but his dad and I were divorcing and sorting all that out and there were not any crisis points so far as the boys (I have 2 DS) were concerned.

Until a year ago, when it became apparent he was struggling at school. Etc. Behaviour problems escalated, he refuse to do home learning, he claimed he couldn't remember stuff he'd done at school, and a penny suddenly dropped that he wasn't just being purposely difficult, he really could not remember. I arranged a meeting with his teacher (he was 6 and in year 2), which was enlightening to say the least, and I was strongly advised to ask my GP for a referral, which I did. We were all thinking more along the ADHD (inattentive) lines. The referral involved detailed preassessment forms, which I and school completed (again sobering to read their account of him, and there were many - I could see - ASD flags raised by them).

This was a year ago. Last week my son had the assessment and was diagnosed with ASD. It was entirely predictable during the meeting that this would be the outcome and I can barely believe I didn't realise. I mean I knew he was quirkly, difficult, challenging, but he didn't tick some boxes that I thought were really important, such as he seems to have no sensory issues, and I didn't think he had repetitive stuff (though I can see now actually he does, it just isn't the stereotypical hand-flapping).

So it's taken a year. He's 7. And during the year I have second-guessed myself a million times. Is he getting better, perhaps he's just immature? And academically, from really struggling very much, he's turned a corner since going into year 3. He's in intervention classes for maths and literacy and responding to the smaller group situation. He's a smart kid, and the chasm between knowing that and what he was producing/how he behaved in class (basically he was not disruptive but he was in his own world most of the time and constantly needed someone poking him to "bring him back", as they put it). But - I was never going to suggest we didn't have the assessment, even though I wondered. SO glad he's had it now. I don't have the questions or the wondering, it's cleared my head and we can focus on what he needs to get on with life the best he can in a world he doesn't intuitively "get". Nobody is surprised, nobody who knows him, and I am just relieve and happy that it's not up in the air.

THIS is why it's worth going for assessment. Just to know, once and for all, one way or another. Until you do, you'll always wonder.

EineKleine Fri 20-Jan-17 15:18:05

Thank you MrsMartin, it must have taken you ages to type all that.

Yet another day yesterday when the teacher said he's fine and all I heard from him was x made me cry at playtime again, can I play on the ipad. Neither a diagnosis or assurance that he is NT would fix that but it might be a step towards us being able to help him somehow.

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