Can mummys of ASD kids help me?

[Barmymummy]

Had a paed appt on Thurs who says DS has a touch of ASD (the classic type as opposed to Aspergers I think). He will be 4 in under a month.

I have found age 2 to 3 1/2 just awful, really hard. Massive regular tantrums, NO to everything, very loud vocalisations, shouting at people who simply say hello and just simply dreading taking him out to shops and doing the school run. The list goes on!

Anyway, at xmas (age 3 1/2) the tantrums stopped, thank goodness, and some of the other behaviours stopped or got alot better.

I am really just wondering which age brackets you found were particularly hard and which were easier. I am not looking forward to him starting school in Jan as I am expecting to go backwards for a while while he sorts out in his head what goes on there but am confident he will settle after a few weeks. He will go to MS with no special requirements etc, just a report to say what his the paed noted.

As I say, his behaviours are mild but to me quite obvious. Others comment they can't see what I am on about, but thats coz they dont see the repitition side of things that I do, even playschool were shocked when I told them hosp said he was mildly on spectrum.

I know everyone's experience is different as every kid is different but I guess I am just trying to see if things tend to get better or worse with certain ages.

One last thing do your kids do vocalisations? My DS is fond of repeating (delayed echolalia) songs, books, TV etc when ambling around the house/playing but he has this need to make noises (1 in particular) that he likes to do quite loudly. Hosp told me this would likely go but wondered if this is true? I let him do it at home whenever he wants but am trying to teach him that its not appropriate to do it out and about when we are somewhere quiet. Easier said than done obviously but I guess am worried he will do it alot in the classroom .

Any experiences or advice would be lovely, thanks,xxx

my son has atypical autism.
he does the vocalisation thing, now he is nearly 9 it tends to be that he will make up songs using made up words and will just make alot of noise for the sake of making noise.
With my son we didnt really think he had a problem till he reached year one in school so he would have been nearly 6. with hindsight we now realise the reason he was so challenging between the ages of 2 and 3 was due to his ASD. As a baby he wanted attention all the time and needed routine and still does.
My son is very clever and i feel this masked his ASD alot. At first glance or only spending short amounts of time with DS he appears to be 'normal' but when you get to know him i feel it is becoming more evident he has difficulties.

Yes, my DS2 (asd) repeats things - from the playstation he took "you want a piece of me" now uses it when playing his DS. From Tom and Jerry "Bonjour Monsieur pussycat" which gets thrown into conversation every now and again.

He is 8 now and attends a communication unit attached to mainstream. He is settled but there are still behaviours and he is due to be assessed for adhd.

However, he was much more unsettled between 3 - 6, perhaps as he is better able to communicate it has reduced his frustration and he has matured as well.

That's in general, it can change on a day to day basis!!!

My DS's behaviour changes constantly, depending on his stress levels. He was the easiest child until he was 3. Things got really bad for him when he started school. We seem to cycle - a great 3 months, a horrendous 3 months.
I find that the problems I am expecting don't always happen because I have been prepared for them. As helensmelons says, we have to judge it day by day (or even hour by hour on occasions). There are no predictors unfortunately.
Some things have improved - the echolalia for example, but other things, such as his flapping, and vocalistaions, have increased.
I do find as DS is getting older, we can find more effective strategies to cope - structure, lots of visual supports, weighted blankets - purely we are beginning to understand him better.

My ds (asd) repeats everything aswell. A favourite of his is "Cillit Bang, bang and the dirt is gone" god knows why.

Not to think negatively he was a hard baby. Wouldn't feed properley, had major sleep issues, failed to hit all the milestones, wouldn't potty train.

I think like the others have said, you adopt coping stratergies. A relative is always saying, are you sure, he doesnt seem that bad. What she is unaware of his we have learnt to spot the signs and learnt how to divert them, we are actually quite good at it now lol. You also have to get inside their head and think like they do, very literally. My ds was being assessed by the paed at school and the teacher read a story to them. In the story the teacher said "and such a body closed his eyes" my ds was observed closing his eyes.

I also think like HelensMelons has said it changes from day to day, so hard to say when he has good stages age wise. One week, we think where getting there and then Bam! back to square one. I don't know if others think the same but, if he is poorly he goes very downhill for weeks after.

OMG Yes CILLIT BANG!! Thats one of his previous faves too! Has stopped now but that drove me mad for weeks lol!!

Yes, Alfiemama - if DS gets ill or even when he's constipated he is much harder to manage.
His school have also noticed as well.

ATM, I can cuddle, lift him, carry him upstairs, if he is being unco-operative at bed time, etc. don't know what I'm going to do when he gets too heavy.

Today, however, he is kissy, which is lovely.

Ooh yes, when he's constipated it's awful, totally goes backwards in progress.

I find that one minute overly loving, must say I love you 50 times a day. Then other times cant even manage to look me in the eye .

When the paed observed him at school though. The school commented and said typical he was having a good day. But when I got the paeds report she had picked up loads, so please don't worry they are trained to pick up queues that we don't see.

Is the paed going to observe your ds Barmymummy?

Also just on the echolia, when you read to my ds he repeats it back a second later whilst flapping. Must be blumming hard for his teacher.

I get grumpy when constipated...
DS2 still makes noises (he is 8) but he saves them up for when he gets home, which really pleases his brothers!

I'm nodding away at the repeating adverts bit. The current favourite is singing "Compare the market - dot com!" which is usually followed by ds2 doing the meerkat voice and saying "compare the meeeeeeerrrrrkat!"

Ds1 (ASD) is almost 9. Probably the most difficult times have been when he's had a testosterone surge. Somewhere in the archives I think there's a thread I started, asking if 6yrs old was a common age for behaviour to change as ds1 was around that age and had suddenly started getting very angry about everything. He had another bout of that just a couple of weeks ago but seems to be over the worst of it now. The clocks going forward in March seems to be another trigger.

He also has similar times when he makes huge amounts of progress almost out of nowhere. These seem to occur every 2 years or so: 3yrs old was when he finally 'got' the point of communication and language. 5yrs old was when his language and comprehension skills improved by an enormous amount. 7yrs old was when his fine motor skills improved and his academic progress raced ahead.

Ds2 (AS) is 6. I don't think there have been any particular ages that have really stood out. His behaviour is mainly influenced by things like tiredness, change of routine at school, and how close to the end of term it is.

At some point or other, their lack of 'obvious' traits has been commented on, although this is usually followed at some point by an "Ah. I see what you mean now..."

Oh that meerkat advert has been doing the rounds in our house too!, mind you my dear brother once shouted out "everyone's a fruit and nut case" during a performance of "the Nutcracker" causing much head swivelling in the theatre, actually he used to sing lots of adverts when he was wee ... I digress, I agree with coppertop, illness and tiredness have the largest effect on behaviour although DS1 is coming up for 11 and i fear that hormones are coming into play as he has got more moody and angry than normal recently.

Alfiemama - nobody is going to obseve him etc. TBH it was weird, there was no help or advice at all. Am left to try and do some investigating myself really. He may only have mild traits but its not the point is it?!

Ho hum, Thanks for all your replies,xx

Hi Barmymummy

That does sound poor to be honest. As I'm sure a lot will say, it is a long process and I would have thought that they can't just observe him at a meeting and decide that they have it all sewn up. If that makes sense.

I was told that it was very rare for a paed to say straight off what she thought. Ours said she had been doing the job a long time and said she had seen enough to dx autism. However it still had to go to panel and he still had to be observed in his own surroundings.

Lol to the fruit and nutcase. They do seem to pick up catchy adverts. We had the admiral one for ages, hated it.

No time to read posts now. My DS (11) has just been recommended for AS Dx. (low spectrum)

He has the most awful rages and has just had one. It is mostly verbal at the moment. Does anyone experience these and just struggle sometimes to put it into perspective of their DC's problems and just want to howl?
I know he doesn't mean the things he says and try to be calm and calm him down but I just wanted to cry cos I needed a quiet day without an outburst, and where do you find the strength to keep going in circle knowing it is going to be an uphill struggle to achieve any thing close to normality.

His Dad and I are separating and I am a mess as it is. DD mimicks his behaviour, but no other concerns.

When he calms down he will talk like a 2/3 year old that has had smarties and coca-colA.

Hi Alfiemama - you are aboslutely right in what you say. I have just come off the phone from my HV who was astonished to her what I said. She said she has never heard of being told in the first appt etc etc.

She is coming round on Weds to talk through with me. I can only imagine that he is so mildly affected that the paed feels it unnecessary but even so I would feel better that he went through the proper testing to be sure.

Will see what HV says. Am also now busting to see the report that comes through as this should be in alot more detail.

Has anyone else heard of coming out of first 40 min appt with a 'result' so to speak?

Mitsubishi I really feel for you and am sending you lots of hugs. I know alot of people on here have this daily struggle but it may be best to post a seperate thread and you may get alot more answers than on this one. My DS doesn't seem to have the rages/tantrums anymore but I remember them all too well xxx

Hi Barmymummy

Glad that the HV agree's with you on that one. Im not sure though what a HV could do with regards to that one. Im sure someone will advice though. I thought paeds where quite high up.

It was strange seeing the report for us. I would think they all have to be written a certain way. Mine was going through everything I had said, which I thought was strange but then summarised at the end what she had seen or picked up on.

Also, I would say 40 mins was a short appointment. Mine was 2 hours and on the letter I got it did say min of 1.30hr.

Once again I can only go off experience and I am by no means an expert on this and I am sure some of the others will help with this also.

Also you may find that things become more apparent once he starts school and the Ed Physcs get involved. Teachers seem to be quite clued up these days.

We had no observations by the paed herself, other than what she saw in clinic. All our observations were mad by Ed Psych, SALT and inclusion support when DS started school (he was just 4). The paed then effectively collated the info and confirmed diagnosis at a multidiscipinary meeting. She did tell us at our first appointment that 'she did not need convincing' that DS was on the spectrum, but warned me that it would take time to formally diagnose. It actually only took 6 months.

We were given no advice on what to do. I learned from mumsnet. I was also able to do a NAS Help course, which was very useful - it is aimed at newly diagnosed families, but when i enquired they were happy for me to attend to. Real advice only came post diagnosis from the earlybird course, but to be honest I had already learned many of the techniques by necessity beforehand.

You are in a similar position to where we were 2 years ago. Starting school was very scary, but it did act as a catalyst. DS is now very well supported and doing better than I dared imagine. For us the key has been finding a good school and a supportive HT who will not be fobbed off by the 'professionals'.

I will start my own thread re DS 's problems but can I just say how relieving it is to read this thread and see so many echoes of my own experience with DS?

He is excellent in new surroundings but as he starts to relax becomes more like the true self we know. For example he has started having outbursts at clubs, where before, with the novelty value, he was 'safe'.
The kids poke fun at him, get him wound up and then laugh at him. He was beyond comfort tonight.

All the stuff when he was growing up was so much like what some of you described. I tried to get him help at many stages, the saddest being when we got very close, and the specialist signed him off. He was then retired due to malpractice and my Son's mentor said they were doing a lot of work now with children who had seen the man. 5 years of emotional battles because no one would listen. .

I will do my own thread but it is just such a relief to read stuff by people who understand. Walking away from cricket tonight with him screaming at everybody, in his own personal misery, with his 'friends' laughing at him broke my heart.

It gets broken a lot.

At least maybe now we might get the support he needs and soething to work on instead of wondering what I have done wrong all the time.

Sorry, tired and emotional...but it helped to offload a little.

Hi TheMitsubishiWarriorer

Firstly sorry your having a tough time.

Was it the school that have recommended that he be dx for asd?

I'm sorry that this man has basically messed with your son's childhood. As parents we have to be able to trust the authority's.

Once you get the support and the help that you need and perhaps like WMF said maybe look into doing the early bird course you will feel a lot better.

Let me tell you though, you have done nothing wrong and I would say you must be a very conscientious parent.

No, the school has been mixed in their support and blame him a lot for not coping.

I have persevered myself because I have always had a gut instinct about him. His last 2 years have been hell and he is privately frightened of being like it all his life. He thinks he is just odd. He talks of self harm (and punches himself) and 'not being here'

I am determined that his secondary school experience will not be blighted like his junior years. He deserves better from life. He is an ace kid but just needs the right conditions to shine.

Oh, and thanks for advice. I have started a thread but it was the boost I needed on here. x

We got DS's dx after about half an hour with Paed and SLT. But that was in the days before multi-disciplinary this and multi-disciplinary that and the Paed was IT (over 11 years ago now).
The thing of repeating from ads, films and TV etc is not echolalia, it is Scripting (impressed aren't you?). I always joked when friends moaned about their DCs scripting that, if only DS could script, it would probably be something like "freeze mothafucka, your'e going down" as we never had to edit or monitor our viewing in his presence!

lol Davros

I wonder what the difference is between scripting and echolalia. Our salt said that there is functioning and non functioning echolalia and the adverts and television programmes where classed as non functioning.

They could be the same but am interested to know.

Find the whole subject fascinating.