Am I seeing something that isn't there? All advice/opinion gratefully received.

[RandallFloyd]

Ok, DS is 2.6. He's lovely, lively, funny, is average at talking and sleeps well. He was a little bit late at sitting/crawling/walking but all within 'normal'.

I just have a gut feeling that I can't shake. I've had it since around 12 months but it's really hard to describe why without sounding like your average PFB'er. (Which I freely admit I am!) I've looked at the mchat test but it's difficult to put the way he is into yes/no tick boxes iyswim.

He doesn't like people; adults or children makes no difference. He finds himself a safe place, usually behind a sofa or in a corner, and watches. Then comes out slowly when he's ready. He's ok once he gets to know them but even after a couple of hours I can't leave the room even for a minute. He's fine with close family though.

He's brilliant at independent play, happily amuses himself for most of the day. He plays 'pretend' but it's acting out scenes from cartoons he's watched rather than abstract imagination.

His favourite toys are his Alphablocks and his numbers. He will play with other things but the letters/numbers are always involved. In all honesty I don't think he'd care if I got rid of everything else. He spends his time lining things up and arranging them in order.

He spells out short words but these are ones he's seen on Alphablocks episodes so not 'spelling' as such. Usually 3, 4 or 5 letters but he also spells out 'alphablocks' and 'alphabet'. He has some flash cards and can sound out most 3 and 4 letter words. Once he's laid his things out he gets very upset if you move them or if they fall over. Very upset.

He flaps his hands when he's excited. This can be for any reason, a song, a cartoon, reading a story or just whilst he's playing.

Bloody hell, that's already an essay there's more, but if anyone can be arsed getting through that lot for now I'd be more than grateful!

Thank you, you're both so kind.

The thing is, to me, DS is just DS. Whether or not there's a deeper reason for how he is or not isn't going to change anything. He simply is who he is. He's wonderful.

I think it's the bigger picture that frightens me, the long term picture. If he is on the spectrum somewhere I worry what that will mean for his future, and if he isn't I worry what that will mean for his future too.

If there's a genuine medical reason for it, then on the positive side I can get him the help/support he will need and also he'll have a 'name' for it, a way to explain it to people and to himself. On the negative side he'll potentially be 'pigeonholed' because of it and have to deal with the prejudices of having a 'label'. Also as he grows I'm guessing there's the chance his issues could become more pronounced.

If there isn't a diagnosis for it, if he's NT, then he's still going to find all these situations really hard and there won't be any help for him. He'll just be the slightly 'odd' kid. It's not like all his issues will disappear because a doctor decides he's 'normal'.

I'm not sure that makes any sense written down but I'm not very good at putting things into words. In a nutshell, I suppose what I mean is that there's positive and negative sides to either outcome and whilst he is a lovely, happy little soul at the moment, he is going to struggle as he gets older regardless.

He may find things a bit difficult as he gets older. But you know what? He has the best weapon anyone could have - a switched on mum, who clearly adores him, and is already planning for those potential difficulties. And that is the most valuable thing a person could have. He has you, on his side, working out what to do.

As you say, neither outcome is ideal. But you already know a lot more than you did, and you are looking to find out more. So whatever difficulties crop up, whichever path you tread, you will find a way through it, tiny step by tiny step.

Your both so patient and kind listening to me waffle on!

I don't have anyone to talk to in RL, none of my fiends have children and I'm not close to my parents, so getting my thoughts down on here has been really therapeutic, thank you so much.

I'll try and talk to XDH again today. I've tried mentioning it once and he did admit that he can see what I mean but he's very much a 'brush the things that scare you under the carpet' kind of person.

Whatever he says I'm definitely going to make an appointment with my GP. I really want him onside with me though because, despite being an arsewipe as a husband, he's a good dad and is really lovely with DS. They have a really strong bond and though he's doesn't find it as natural as I do, he's very patient and DS adores him.

You're not waffling on

Keep talking, if it helps ou to organise your thoughts. You're right, it would be great if you could get ds' dad onside too. You are doing really well even recognising there might be an issue, let alone doing anything else.

Your ds is very lucky, having 2 great parents who want the best for him.

She sounds lovely Polter.

It's the school thing that's sort of forcing my hand tbh. It's only pre-school but I know he's going to struggle. Yes it's another 6 months away and I know he's going to change a lot in that time but at the moment I can't imagine him coping at all. There's just no way I'd be able to leave him with strangers, he'd be utterly hysterical.

I'm going out with my Nanna later which will involve a trip to a soft play. It's in a different county to me so I've got a horrible feeling they'll be on half term. It'll be a good thing to document though. I'll try and write down what he does so I can try and see if it's just general shyness or something more.

It. Was. Mental

Luckily he was still just small enough to go in the toddler bit which wasn't very busy at all. He was fine but, as usual, didn't interact with any of the other children at all. He managed to make eye contact with one lady, which was nice, but he wouldn't speak or smile.

I was a lot more aware of the other kids this time though. I watched them more carefully than I normally would and it was a bit sobering if I'm honest.

They were all a lot younger than him but the way they interacted was completely different. It's hard to put into words because they were all far too young to be 'playing' together but there was just something very
different.

There was one lovely little boy who looked about 12-18mo, he was smiling at me and we rolled a ball to each other for a while. DS wouldn't have done that with me at that age never mind a complete stranger.

I don't know, it's hard to explain but it definitely confirmed my decision to at least see our GP.

I remember well the fear of assessments etc and the comparisons with other children. I used to drive myself bonkers. We want through a waiting game for many years with nobody but me really seeing signs as his aspergers is quite subtle. However the waiting game really is the worst part and I wish for peace of mind I had pursued things earlier.

I know everyone is different but for me the relief of not doing the is he isn't he anymore is enormous. Of course now and again I still get it but I always remember watching very young children in the playground interacting together in a way that DS didn't and I realise that he is ASD.

I think you are right seeking a referral. You have nothing to lose but even if it is not ASD it sounds like he could do with some help with some issues.

DS is 12 now and is a caring, loving thoughtful child who is very popular with other children.

Thank you Tea, that's exactly it. I go from 'he is' to 'you're seeing things' every day. Every one of his little 'things' can be explained away as just toddler quirks but it's when you put them all together that you get the bigger picture iyswim.

I've just forced myself to do that mchat test thing again.
He scores a 6/7.
We have a GP appointment for 12th March.

God it all seems very real all of a sudden.

well done, Randall. the first step is often the hardest because, as you say, it makes it seem very real.

keep observing over the next few weeks. make detailed notes. you want to be able to make th eGP appt count.

I will do, thank you.
What sort of detail is useful?

Marking my place to come back later, hands full atm.

I think I would make a list of the sort of things you have mentioned above. You sound like you have a good grasp of what ASD is, so while a parent who doesn't might say her child does pretend play you will be able to confirm that much of it is acting out TV shows which is a relevant point .

I made a list of things that I thought were indicative of ASD and also a list of things that were not.

For a while afterwards I felt I had given them too much in that I felt I handed them a diagnosis on a plate, particularly when I saw my own words in the final report. However there were lots of people involved in the diagnosis along the way, Ep, teachers, SALT and paeds and I was being honest in my feedback.

Although I didn't do it some people feel its beneficial to provide video clips of their DS 's behaviour particularly if they feel their DS won't show his true self in the clinical setting.

Good luck!

My ds is almost 2 1/2 and I recently went to the doctor about concerns. I took a printed off m-chat sheet with me which she took and was going to attach to the letter she sent the community paediatrician. I wish I'd listed everything though because I started crying and couldn't get it all out. Not that I needed to do that too much as some things are pretty big flags for a child not developing typically.

Last week I decided he wasn't on the spectrum at all and it was just a language issue and once that is sorted he'll be fine, but we went to soft play this week as well and I found myself surprised at how interactive much younger children than him were. ds1 is almost ten so I'd forgotten what little children are like, but even little, only crawling children were way more social with their parents and older than that but younger than ds were roleplaying cups of tea and stuff. There was even this barely more than a baby watching ds in the ball pool as ds was touching each ball to his face and pausing to stare at the light and then the baby started copying ds. It was like seeing some kind of baby genius! The child noticed ds, watched him and copied?!? I wanted to cry at that point really, ds didn't even acknowledge the existence of anyone else. Then at the end he was worn out and so ran in circles on his tiptoes, flapping his hands and I just thought why am I trying to kid myself.

The future is scary. There were people there thinking ds was cute and inside I raged cos I thought how cute will you think he is if he's 5 or 8 doing the same kind of things, no, you'll probably avoid him cos you think he's weird. I feel pretty angry at the world right now. And guilty for feeling angry.

That's really helpful Tea, thank you. I think videoing him would be a really good idea too. I need to make sure I note the details properly though, because as you said, a lot of it is very subtle.

Don't feel guilty Swaying. You can't help how you feel, it's a bloody roller coaster! That a good idea to print off the mchat, I hadn't thought of that.

Ah gawd, swaying, I want to reach through the screen and give you a hug, I know I exactly how you feel. We had dinner with friends last night and they chuckled over the 'funny faces' DS was pulling.

He's 3.5 now and we are getting to the age where previous quirks are becoming more and more noticeably unusual behaviour. I fucking hate that people are starting to gawp at him in public and am tempted to start carrying round some sort of pointy, poky stick to remind them of their manners :o.

You should patent that stick, I bet you'd make a fortune!

I'm dreading DS not growing out of his flapping. To me it's cute because it's just part of him and it means he's happy, but in 6 months time he's going to be 'that funny kid in nursery who flaps his hands all the time'.

It breaks my heart.

I would add that I have had concerns about DS since he was very small. Mildly delayed gross motor skills, mildly delayed speech, quirky behaviour. Up until he turned 3yo no one really took me hugely seriously, but I was able to get basic hearing/vision tests out of the way.

Since he turned 3yo, we have suddenly started being taken much more seriously, as the gap between DS1 and his peers widens. He spends a lot of time recreating favourite programmes, with a lot of other echolalic bits of speech too. We are now awaiting SLT and paed referrals, but the best thing we're doing while waiting is working with an independent SLT.

She's doing a receptive language assessment on him tomorrow, actually. The point of our work with her is not to try and find a diagnosis of anything (he's a pretty complicated chap and I think it's going to take us a long time to figure out what's going on), but more to understand which areas of language he's struggling with and start building a concrete plan of action for helping him.

Wish I could meet some of you going through similar in real life. I feel so isolated.

I know what you mean about isolation. I don't have anyone I can talk to about it either. None of my friends have children and I can't talk to my own mum because she's a histrionic nightmare! (That sounds awful I know but she has a way of making everything about herself and I can't deal with her keening and wailing about how upsetting it all is for her)

We're lucky in that DS's speech is fine and his comprehension is fine too so communication isn't an issue. It his social skills mainly. He's so frightened of anything new and apart from my niece, who he spends a lot of time with, he won't go near any other children.

Today I watched him dig through a bucket of assorted letters & numbers and pick out the entire alphabet which he laid out in perfect order. He was flapping his hands with excitement the whole time. He looked so cute and happy but at the same time I know it's not 'right'.

Aww, thanks Somewhat.

It's rough. Ds2 scored about 15 on the m-chat though to us doesn't seem bad, but he does have a significant speech delay/problem which I am contacting a SALT about, not NHS though, don't fancy a big wait etc. My sis said she'd help pay.

We too enjoy him how he is, but know how he'll be seen by outsiders. It's hard. He's such a little sweetie.

You sound like a great mum, and irrespective of what whether your DS is NT or not, I am sure that you are right in trying to understand what could be going on and preempting problems.

I say this as somebody who has probably been an ostrich, like your DS' father. My DD is 11 and is in the early stages of assessment for probable ADD/ADHD, with possible associated ODD, anxiety and dyslexia, and is now also being checked for HFA/Aspergers.

I am struggling with my feelings about it all. Mainly, I feel deeply ashamed that we let her get to this age without having her assessed earlier, as I think our inertia has not done her any favours. When we look back, the problems have always been pretty clear, ever since she was a baby, and DH and I (and the extended family and close friends, as we are slowly finding out) have always assumed that she was different in some way and things were not 'right', but we never did anything about it. It happens so easily: kind and well-meaning family and friends brushing off her behaviour as quirks, a phase she would grow out of, a certain temperament, things that all kids do, or just me fussing, etc. etc.

We needed a kick from school to wake us up and seek help, and I am glad we finally have, and yes, I wish we had been braver sooner.

Good luck!