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The Great and Good of ASD tell me that ASD can't get worse. But ds3 definitely is. SO??

(33 Posts)
PeachyInCarnivalFeathers Sun 08-Nov-09 19:40:13

The tertiary psych and others atwho have lectured at Uni say that ASD can never go backwards.

But ds1 really has done; school has noticed and it is getting ever more dramatic.

It might be becuase his language is getting a bit better, and he is mroe able to kick out (not literally) against all the sensory things that are acusing him pain, but he has become a very different child and now we are into the whole no-crowds-no-noises world.And that's horrid step backwards.

Anyone else any expereince?

asteroids Sun 08-Nov-09 20:12:11

I find that my ASD goes through phases. I can have a few good months where the symptoms/traits are minimal. Then I will have a few bad months where everything is awful: depression, agoraphobia, major sensory issues etc. For an adult, this is difficult to manage. I'd imagine it's much harder for a child.
Rather than going backwards, I think ASD is more an up and down movement.

Barmymummy Sun 08-Nov-09 20:16:11

I don't have much experience of this but I definately notice my DS's ASD going through peaks and troughs. I worry that he is going backwards at times but then he seems to catch up again.

Really hope your DS improves soon sad

asdx2 Sun 08-Nov-09 20:24:41

Same here we have definite ups and downs and have done since even before diagnosis.
The downs normally happen when dc feel extra stressed.
The down at the moment for ds is a result of the clocks moving back and dark evenings.

saintlydamemrsturnip Sun 08-Nov-09 21:26:14

DS1 was the easiest 2 year old in the land. Aged 10 he is know to services to be 'challenging'.

He understands more at 10 than he did at 2. And he has lost his passivity. So he's not 'worse' in one sense. But he could access a lot more at 2 than he can at 10. At least in terms of being present in the same room (we could have taken him out for a pub lunch at 2 for example and had a conversation at the table- that's been impossible for about 6 years now - he's in the kitchen, in the toilets, trying to get into private areas, got his head in the microwave etc etc).

asdx2 Sun 08-Nov-09 21:31:58

Ds on the other hand was a living nightmare at two and at four was described as having extreme challenging behaviour. Whereas at 10 with puberty kicking in he became far more reasonable and is now at 14 very withdrawn and easy to handle.

anonandlikeit Sun 08-Nov-09 22:08:45

ds2 was also a V V passive baby & toddler, no interaction, very easy indeed.
With progress & maturity have come an increase in typical autistic type behaviours.
I'm sure he is getting more out of life, learning more as he is more awake iykwim but the flip side is the sensory overload that he struggles with & makes everything hard work.
Recently we have seen an increase in his confidence BUT the trade off is agressive reactions rather than internal anxiety.

2 steps forward 3 steps back!

PeachyInCarnivalFeathers Sun 08-Nov-09 23:37:40

asdx2 I shall reta9n that hope for ds1, we'repraying he gets a place at a specialist AS class in yr7- with that I think he will make supreme progress.

MrsT I think that sounds like him, his world is closing in- last night we went somewhere that alst year he sat quietly with a drink and shut off a bit,last night he span around on the floor screaming until wetook him out (as fast as we could, just needed something for the others).

We've has regressions in the past where he lost tpoiloet training or whatever becuase of a change- but this is different, more of a sea change really, his sensory stuff has taken over.

PipinJo Mon 09-Nov-09 00:09:20

Message withdrawn at poster's request.

saintlydamemrsturnip Mon 09-Nov-09 08:27:04

ds1 isn't really affected by sensory stuff. He is VERY sensory seeking so it is practically impossible to knock him off course with anything sensory. For him his challenging behaviours come really from an inability to control his compulsions. Of which there are many. So if he spies a microwave in a kitchen he HAS to open it stick his head in slam the door and turn it on. To stop him doing that means physically restraining him - which isn't easy given he's now the same height as my Mum! So to access a place with a microwave we need understanding kitchen staff- then it is doable. But of course how can you predict who will be accommodating and who will be sucking lemons????

PeachyInCarnivalFeathers Mon 09-Nov-09 09:22:41

Pipin he's 6. I think the toxicity may be afacorwith ds1 (but can nameseveral) andds3as we lived on theA38 when they were babies (as iopposed to country laneswith ds2 andds4). But he'sa bit yopung yet.

MrsT the compulsions is mopre like ds1- thatsexactlywhat hewoulddo, andyessssss to trying torestrain- ds1 is still diddy coz of the eating, nevertheless he is a fit almost- ten - year - oldnow, and I have no ideawhat I will do physically in a fewyears.

DS3- he s[ends alot of time in absences. His Paed is a specialist at epilepsy so I accept her reassurance its not an epileptic absence, but it stillcan last hours if we are somewhere busy or he is stressed in some way, so often when we are out I end up towing him as he doesn'tr actually seem 'with'us iykwim? He also spends a lot of timestimming, if youadd in hispc compulwion thats now all totalling 95% of hiswaking time. Hisattention span has halved also school tells me.

AngryFromManchester Mon 09-Nov-09 10:52:00

lots of children with significant learning disabilities have spaced out moments. We are told if it is a proper absence they would ignore you waving your hand infront of their face............

PeachyInCarnivalFeathers Mon 09-Nov-09 12:04:55

Yep, thats what he does, always has done since he regressed as a toddler. You can clap and yell, nothing happens- his eyes almost look in on themselves and he goes for a bit. Used to be always a few minutes when any social interaction had been required (eg at the dinner table), but now it can be much, muchg longer

borderslass Mon 09-Nov-09 12:15:32

my son used to have absences he had an eeg because they were worried but it showed nothing he still takes a long time to register that you want him its all to do with the learning disabilities

Marne Mon 09-Nov-09 17:41:38

ASD can regress.

Dd2 seems to improve (so far no regression) but we come across new problems as she gets older and the traits become more obvious as they get older (to us and other children at school). Some traits she has out grown but others (that we thought she would outgrow) seem worse such as not sitting still (it was ok to not sit still when she was 2.5 but now shes 3.7 we would like her to be able to sit still for 5 minutes).

Dd has out grown most of her traits (sensitivity to sound, phobia's) but the traits she still has seem to be stronger than they were 2 years ago (she always has to have the last word and always has to win).

sphil Tue 10-Nov-09 16:19:08

If I compare 'how autistic' DS2 is now at 7 compared to, say 2.5, I would have to say he presents as more severe. He has more autistic behaviours or maybe they've just become more obvious compared with his NT peers.

I would agree with others that as his understanding and ability to communicate has increased, so has his awareness of his own power and therefore more challenging behaviour. For example, he has just discovered pointing, big time. So he comes into the kitchen about half an hour before meals, says 'chipschipschipschips' non-stop while pointing at the oven and pushing the oven gloves into my hands. It's almost impossible to distract or divert him (it used to be very easy) and he now gets very upset (grabs my head and does the 'almost-biting-but-not-quite' nose to nose thing). It is positive, because it's communicating, but it's much much more difficult to manage.

We are also getting much more sensory issues recently - refusal to wear certain clothes, shoes etc .

sphil Tue 10-Nov-09 16:20:15

MANY more sensory issues blush.

justaboutautumn Tue 10-Nov-09 17:02:07

Message withdrawn

123andaway Tue 10-Nov-09 17:09:14

DS1 hasn't regressed as such, he's 11 with AS, but his disability is certinally becoming more 'obvious' as he gets older and the gap between him and what you would expect from a 'normal' child grows. A 5 year old having rolling around the floor in Tesco is one thing, and 11 year old (and he looks older) is quite another!

ASDx2 - your post has made me hopeful - I am positively dreading pubity!

asdx2 Tue 10-Nov-09 18:54:19

I think Jack appears to be an exception rather than the rule from all the children I know of unfortunately.
Having said that at the autism base he attends the oldest pupils Jack 14 and another are considered a delight compared to the younger ones 11 plus.
Thinking back though Jack's peer was an equal handful at eleven but is pretty amenable now as well.

MaryBS Tue 10-Nov-09 19:33:42

I'm affected by my hormones. I was a nightmare in my teens - not in terms of rebellion, but in terms of anxiety and stress. At some point I've got to look forward to the menopause hmm. I've just had a Mirena coil fitted, and its made a HUGE difference to my mood swings.

saintlydamemrsturnip Tue 10-Nov-09 21:36:18

Some children can be very affected by the seasons as well. Lucy blackman in her book writes about her problems with moulds each year.

I find developments often introduce their own problems. For example ds1 now understands days of the week. So he can fetch his swimming stuff if I forget on a Friday for example ( and he does throws it at me shouting nee neen) but he has also become much more rigid about what happens when. He used to be very relaxed about timtetables but woe betide anyone who tries to change days now.

sphil Tue 10-Nov-09 23:33:34

Can you remember which times of year are worse for moulds? DS2 is definitely different atm - at home more thsan at school - the change of season normally affects him physically (asthma) but seems this year to be affecting him in a sensory/emotional way.

I sometimes wonder whether suppressing the asthma (he's on regular inhaled steroids)means that the reaction comes out elsewhere.

saintlydamemrsturnip Wed 11-Nov-09 08:55:09

Lucy is Australian so it will be different - but mould like damp so autumn/winter. I think you'd enjoy her book sphil.

sadlynoNOTthatPeachy Wed 11-Nov-09 09:23:14

Wow, MrsT- Sam hasn't got that yet. Days of the week seem to override him (in fairness though remembering things overrides me too, annoyingly....luckily today the school has spare drumsticks LOL)

Routine is becoming a thing; its pasta every day now, he wants it at Christmas too. But then, at elast it'spasta and not something else,pasta is good

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