Can I ask you a few questions about ASD/AS behaviours/traits, please ?

[TheodoresMummy]

I have asked stuff before, but am getting nowhere with Pead and feel like I am losing it a bit.

Briefly, DS is 4.2. I saw HV about him aged 2.5ish as not much speech (only single words, but plenty of them). He also had some behaviour that I was concerned about, some of which he seems to have improved although not sure if it's been overcome.

So what i'm wondering is:

What do your DCs do that is considered stimming ? How often ? What triggers it ?

Is the trait always there ? i.e. if your DC desires routine, does that apply to everything, every day ? or do they just have 2 or 3 routines throughout the day that they rely on ?

My DS often lines up toys, but sometimes he leaves them spilled all over the floor. So does this indicate fussiness, but not autism ?

How can you tell if whinging, crying, screaming, hitting, etc is because they have a controlling personality or because they cannot bear what is happening - e.g. told it's time to finish a game, there aren't any more oranges, they must clean your teeth.

I have a hundred more questions, but do not want to bore you.

Any help is very much appreciated. I wondr sometimes if i'm just making all this up.

Its very hard in the early years. I wondered if I was imagining it or maybe was such a terrible parent and my PND had caused the weird behaviours.
ds1 would have times when he seemed 'normal' but then something would freak him out. But we had consitencies too. He always freaked to singing, dogs and crowds. He often (about 70% of the time) hand flapped while out. He always pulled his t-shirt over his head and started rocking when we were out but had stopped moving.
But you do get people who say 'oh, its just bad behaviour'
Even now at 14 when he has managed to return to school after 7 years of HE and can talk and debate and is top of his class academically, he still has many many moments when you remember he has Aspergers. Over his food. Still hates singing, still taps, still hates going anywhere, still has to have labels removed and still has bizarre fears.

Ds1 (7yrs and ASD)doesn't stim much now but when he was younger he liked to either spin round and round on the spot or walk round in circles. He still flaps his hands, usually when he's upset or frustrated about something.

Ds2 (4yrs and ASD) is very physical so his stims include things like jumping (either on the spot or jumping off things), running and bouncing off the walls, and spinning. Tiredness and/or over-excitement tend to be ds2's biggest triggers. Ds2 is almost constantly on the move so it's hard to tell how much is just usual 4yr-old boy racing around stuff and how much is stimming.

The routines have changed over the past couple of years but they seem to fall into two groups: doing actual activities at certain times of the day, and how they do those activities. They are not bothered about, for example, going to bed at exactly the same time each night but the way they go to bed has to follow the same pattern.

The big one used to be having to go to or from particular places by a certain route and having to do specific things each time, eg climbing on to a particular bench, running round a particular bin each time. I couldn't just stop off at the shop on the way home from pre-school. There would be a major meltdown if I ever tried.

Now that the DSes are at school they get a lot of their routine there. At home the main routines are things like what happens when they get home from school, going to bed, and (for ds2) going to a particular cafe on a Saturday and always choosing the same thing.

Ds1 has never really been interested in lining things up. The only time he did was during his first visit to the Paed. Ds2 lines his up sometimes but isn't obsessive about it.

Since having a dd who so far seems very NT, I'd say the big difference with the crying, screaming etc is that with dd it's less intense and she can be distracted from it. If there's something she wants but can't have she will get upset but will stop when she sees an alternative that she likes. The two DSes could not be distracted like that. All three have hated the hoover at some point. Ds1 would scream, put his hands over his ears and then go and shut himself in a cupboard. Ds2 would scream and throw himself to the ground repeatedly. Dd will cry but can be consoled almost immediately just by being picked up. It's a different intensity.

The feeling that you/one might just be imagining it or overreacting is a fairly common one, I think. Even when ds1 spectacularly failed his 2yr development check I still worried that I was imagining his difficulties.

I too remember thinking I was imagining things, or a bad mum, or paranoid - and the well-meaning friends and family saying "there's nothing wrong with him, he's just a very active little boy, he'll speak later because he's a boy etc" didn't help. It is very tricky to diagnose, but the first question I was ever asked by a very eminent autism expert was - "does he point?". The answer was no, but what she meant by that was - even if he doesn't talk much, does he have the ability or desire to tell you what he wants, or does he (for instance) just use your arm like a tool to get something. It has to do with the "otherness" of autism, as if he didn't realise I was a separate person to be communicated with. His stims, like your DS2 Coppertop, were all very physical - mainly jumping and bouncing up and down, hand flapping and making a constant "EEEE" sound. What made it more tricky is that he had none of the routine obsession, and though he did line toys up, he didn't ONLY do that. What I later found out is that he is borderline on one of the triad of impairments - the one about obsessional, routine type behaviour. However, he is very speech delayed, has poor social skills and we had to teach him to look at people as his instinct was to make little or no eye contact. He was also more interested in things than other kids, something which was different to my NF DD. It's such a nebulous condition, but all I do know is that to be diagnosed with ASD you have to have characteristics on all three of the triad - there's a test called a CHAT test which you might find on the internet. Aspergers is milder of course, and is basically ASD without the speech delay and usually with normal intelligence (though ASD can also have normal intelligence of course). The crying at not getting own way is something I do recognise, as my DS at a younger age did not understand why he could not do exactly what he wants to do at any given moment. His tantrums are much better now, through ABA therapy mainly. Good luck TM!

My ds stimms with light switches, tapping, spinning cutlery on table, chewing anything, bouncing up and down. A lot has worn of now 12. He has AS. He also made noises like clicking and stuff, he still does this but it doesnt bother me , other people though.
He lined up stuff for a few weeks when 2-3, and then moved on to other things.
Totally freakd by loud noises, fireworks, blender, drill.And scared of balloons popping.

I used to think i was imagining sometimes it also, because he had normal/advanced speech. And people around me telling me it was my style of parenting that had created these behaviours didnt help.

We just got dx and it was very fast because the "they might have grow out of it stage had passed" IYSWWIM.

keep going!

Thank you all so much for your replies.

Will read again then post a bit more.

The running, jumping off things, bouncing up and down and off the walls, sucking and chewing (another winter coat with holes around the collar )... all very familiar.

Have pre-school/nursery not mentioned anything?

I know how you feel about thinking you're imagining it. DS has always seemed strange to me, from the silent, eerily placid baby to the ego-centric 'mad professor' 2y11m that he is now. We had our initial mtg with paed last month and I had almost convinced myself he was normal. Paed confirmed this is not so and it looks like Aspergers traits (which had been my deep-down conclusion too.) On waiting list now for diagnostic clinic (and also EdPsych for future reference).
BTW initially we asked GP to refer us to SALT who assessed and referred us to paed. Not got much time for HVs.

Am really relating my boy is always described as a complex case which they stay on the fence over. My ds2 is 4 in April. He is probs asd going to joint clinic this month maybe will help I don't know. I have stopped going to toddler stuff as he randomly hits and pushes and spins bounces around in identical ways. He is a nightmare at school pick ups for DS1 (resigned myself to having no friends there). And does a thing in the shops where he grabs stuff off the shelves or from behind tills and counters and chucks them preferably out of a door. Has anyone experienced that? Also if I tell him off or things don't go his way he whacks or kicks me? Is that normal as I am feeling like a crappy mother with no control over my ds2.

Nursery are very chilled out and have just supported him as he is. They are very positive and always look to his strengths and think he is fine.

But this year is his 'pre school' year and nursery feel that there are a few areas that he will need support in at school if they don't sort themselves out in time.

So he has been observed (just before Christmas) and is going for assessment day(s) with various professionals around the end of Jan (although we have not had dates confirmed yet and they said they would visit us at home beforehand)...

The areas nursery highlighted were:

1. following a routine/rigidity in play

2. getting and keeping his attention

3. processing language (although he understands when he has got it)

I agree with these, but have more concerns too.

I have no advice really, but wanted to let yo ukow that you aren't alone. I am in a similar place to you - the whole "is she/isn't she" thing. It sways from being convinced it is AS (in my case) to being convinced it is all my parenting/just her personality,

It sucks.

But you aren't alone, and these ladies are fantasic,

Oh spacegirl, I have been there !!!

You are not a crap mother !!

DS has improved a lot in many ways but certainly used to behave soooo terribly in shops that I wouldn't take him into town.

He never pushed or hit other children, still doesn't, but would hit and kick me when upset/scared/stressed. This has also improved because he seems a lot more comfortable with life, but returns at times.

Thanks Flame.

Shoved my husband off the computer at last. So there is hope then TM! He is getting a bit big to strap in all the time and is like Houdini. Abstinance is the best policy.

Yeh, no good strapping DS in after about 14 months. He could always get out of them no matter how tight.

I find that humour is a great distraction. Does he do humour yet ?

Anything from a silly face to saying "stop laughing" when he starts to kick off. He found it very confusing at first so would stop the fit, but then got that it was funny so now that distracts.

Shouldn't think it will last much longer though because it never does. Will have to think of another tactic.

My DS isn't aggressive luckily, he just ignores you and goes floppy if you try and manouevre him physically.
I'm planning to keep him (3next month and huge) strapped in the buggy for the next 7m until new baby is born. If he decides he's had enough of walking he just lies down and rolls in the dirt and puddles and I can no longer carry him home (up v steep hill). When the baby comes, fingers crossed he will like the buggy board but I foresee much standing around in the rain with 3 screaming kids .
I always used to be quite snotty about people keeping their kids in pushchairs over a certain age - feel awful about that now.

My DS used to do that lying down in the road thing Buckets - it may not help, but if I could just tell you what my ABA tutors did to get him out of that bad habit (I couldn't carry him, and he was breaking all the prams). Basically, they chose a time when we weren't in a rush and took him out for a walk, holding his hand with a grip that could not be got out of. When he fell to the floor, they held onto that hand (keeping him safe and stopping him from headbanging), but completely ignored him, looked away, looked at the sky, chatted to someone. Sometimes the tantrum could last for many many minutes, but eventually eventually he realised that he was getting no-where. Once the tantrum had completely subsided (but not till then) they turned back to him and with some cheery chat said "let's go for a walk then" and made it lots of fun. And repeat. It was hell for a while, but within a few days , not even weeks, they had cracked it and it was one less problem on my plate. It may not work for all kids, but it could be worth a try?

Fab thanks, will deffo try it. The last time we walked anywhere I think I was very patient and we inched home very slowly(didn't pick him up because he was filthy LOL) but I did want to punt him in front of a car!