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Can autism symptoms disappear? does this mean its not ASD?

(47 Posts)
ABitStretched Mon 01-Jun-09 16:58:48

Have just had ds1(4) refered for ASD assessment as displaying lots of traits, ticking most of the boxes. Since then I've made a real effort to tune into him especially as he has had to take a back sea for the last 2 years for other reasons. I've made some changes to the home, our routines and our parenting. Just as I'd come to terms with potential ASD he's totally changed. Independent imaginative play, initiating social relationships with other children when we are out, tolerating noise, letting go of rituals and obsessions, hugs, declarations of love, - I can't believe its the same child. So my question is - does this rule out ASD or by some fluke have I come across stragegies that are helping him? Should I cancel the referal as I don't want to rock the boat while he is so happy.

Peachy Mon 01-Jun-09 17:19:11

Children with asd change and the asd can be managed, it can't disappear as such but with excellent management much could be successfully dealt with in some individuals- and at some times rather than others. It's normal to have good and bad patches certainly.

However development of independent play is a great sign.

I would keep paed appt- we cancelled sam's forst one as we thought iit wasnt needed and just ended up waiting on yet another list- see what paed thinks.

coppertop Mon 01-Jun-09 17:31:03

I would keep the appointment just in case. Mine both go through times where they change completely, sometimes for better and sometimes for worse.

Ds2 (6) at the moment would match your description of your ds1 but he is still definitely somewhere on the spectrum.

Whatever the reason for it though, I'm glad things are improving for you all.

ABitStretched Mon 01-Jun-09 17:35:51

ok - keeping the appointment sounds sensible. tbh I'm being torn between 2 sets of friends who mean well but are doing my head in. 2 have older children with Aspergers and think ds1 is def on the spectrum. Another group who know ds1 well - incl his nursery assistant says he is normal and are anti-labelling. I should've kept my thoughts to myself instead of discussing it with them but I just really needed someone to talk to as the last few months with him have been sooooooooo hard.

5inthebed Mon 01-Jun-09 17:38:27

I think (and this is just my opinion) that once you know you are dealing with ASD and not just a "naughty" child, a few of the behaviours do disappear because you are managing and helping with it.
DS2 seems to have lost a few of his ASD manorisms, but they do appear every now and again, sometimes they come back worse than before.
I was always under the assumption that with ASD, their behaviour and quirkiness stayed the same, but it is not the case.
Don't cancel your appointment.

Peachy Mon 01-Jun-09 17:40:07

People who are anti labelling effectively are talking rubbish

Anti labelling, the way things re configured, means anti- support, anti - help...

what good is that?

DS2 is being looked at for non asd stuff and we're a bit well should we shouldnt we but not becuase of the label but all that accompanies it: we need to be sure he really needs it first (I suspect not, school not sure).

It needs checking out one way or t'other: check out the riad of impairments anyway as that is the most accurate way to approach it for yourself (NAS one is simple) but go to the appt, sometimes you might get news of as traits etc which stills helps you know where you are

BONKERZ Mon 01-Jun-09 17:46:59

i had a meeting with DS pead a few weeks ago and we were going through some forms about ds behaviour and i realised that we dont see alot of DS ASD behaviour now as we tend to avoid situations that would cause that behaviour and have changed how we do things to make them better for DS! simple things like giving ds his own chair and his own plates and cups, like not taking him places we know he cant cope with and limiting the amount of people he is with at any one time have all helped change ds behaviour. but he is still asd and the asd rears its head occassionally!

ABitStretched Mon 01-Jun-09 17:54:59

5inthe bed - that is exactly what happened - i went from using standard discipline techniques to looking at the world from his POV and things have improved massively.
Peachy - I went through the traid checklist my friend got when her ds was being assessed and that was a real eye opener for me because i had so many examples for loads of the areas- it sounded just like ds1. But now watching him in action I think no-one, not even a specialist will believe me and I'll look like I'm bonkers and maybe that will comprimise a future diagnosis when he hits school when he might really need extra help.

coppertop Mon 01-Jun-09 18:19:49

Hopefully the Paed will be able to see the bigger picture. I would make a note of all the strategies you have been using and the difference that they've made.

By the time ds1 was assessed he'd started having SALT, was getting input from his pre-school and the Early Years team and was a different boy to the one who was originally referred to the Paed. This was all taken into account when deciding whether or not he had SN.

wigglybeezer Mon 01-Jun-09 18:20:54

I would keep the appointment if I were you, starting full time school can be a big wake up call for those of us who are a bit "are theyor aren't they" about their children. Saying that, I do feel (and this is based on instinct and family experience) that there must be people who cross over from one side of the dividing line to the other during their life time, after all NT children grow out of many different neurological quirks like tics and stammers and repeating jingles etc. all the time.

DS2 (8 & mild AS) was not considered "suspect" until he started full-time school and has improved a lot since his rocky start.

I think you can mechanically teach some children how to fit in with the "norms" better , if your child is not stressed by this. I have recently restricted DS's stimming to two time slots per day as I felt it had become a habit that was preventing him learning to relax in other ways (and it was very annoying to the rest of us lol), BUT I waited years to do this until i felt he could cope, it is working so far.

Time out and reward charts have never worked well for us either despite so many people relying on them, neither does shouting!

The people doing the DX would probably say something along the lines of "well he does have a few traits, bring him back if he gets worse or has any new problems". this is what they said to me when DS2 was referred to CAMHS about a phase of OCD he went through.

I have resisted a formal DX so far by the way as I feel DS2 is borderline but it is useful to get to know how the system works and meet some of the proffessionals just in case.

Phew, long!

mysonben Mon 01-Jun-09 18:32:22

Hi i'm no expert but here is what i know.
When ds2 was a bit younger (he is now 3y 7m) ,he showed more typical and obvious ASD signs then he does now, like he didn't point at things by himself when he was a baby we taught him, he was fascinated with lights on toys or mobile phones, he lined up his toys (mainly his cars he ignored his other toys most of the time), he would run about from one end of the room to the othe side with his head slightly tilted (well he still does it but a lot less),same with his rituals he had a lot more than now,...
He obviously has progressed and so has his communication but he still shows some ASD behaviors in a more subtle way than before, and he has some phases when he is very good and does lots of progress, then he has some phases where the ASD becomes more obvious again.
If i were you i would keep the appointment , just in case.0

troutpout Mon 01-Jun-09 18:51:32

keep the appointment...what have you got to lose?
they won't see something that isn't there

There were times when ds could pass as nt...he got a dx at 10 (nearly 11)

The thing is you normalise lots of stuff that your child does anyway...they pointed out stuff with ds that i hadn't his oddly pitched voice,odd gait...that was just him wasn't odd to me.

You boy sounds like he is doing so well and really responding to all the changes you have made. smile

ABitStretched Mon 01-Jun-09 19:01:20

thanks - you've all helped a lot. can i just ask whai is SALT and CAHMS?

Barmymummy Mon 01-Jun-09 19:07:19

That sounds fantastic! Well done! My DS's mild traits definately ebb and flow, more so when he is stressed but like your DS he has changed so much just in the last year and is really coming on strong now.

What I would love to know is what traits your DS struggled with, what changes you made and the end result smile Would be great to hear your experiences, xx

amberlight Mon 01-Jun-09 19:21:18

SALT - speech and language therapist
CAMHS - Child and Adolescent Mental Health Service that do some of the diagnosing things.

Marne Mon 01-Jun-09 19:31:35

Dd1 changed a lot from the first time we saw the pead to the time she got her dx, i had a feeling that they wouldn't give her a dx but they still gave her a dx of Aspergers.

Most of dd's traits have gone but the ones that are still there are more noticeable.

She has a dx of AS but has no problems at school and very few problems at home.

ABitStretched Mon 01-Jun-09 19:42:07

I'll do a bit of a summary because there was quite a lot - but this post is still massive.
1. Antisocial unless with select friends - if we went to park he always found a hidden corner and pretended to make icecreams
2. We describe him as a conversational train -he doesn't really care if you try to change the direction of the conversation as you would with a 'normal' person, he just goes back to what he was talking about or goes blank
3. Blanking out- not responding to his name, glazing over even in the middle of a converation or a game where he has my full attention (hence not very impressed with HV dx this is attention seeking)
4. Impulsiveness - Might flap an arm out for no reason, shout, make a funny noise - bit random really
5. Fascinations - like asking what every single tree is called, or how stuff works - these fascinations don't happen together to make a variety of questions each day, that would be lovely - no, I'll get 3 weeks of the 'tree', 2 weeks of the signs' 3 weeks about how cigarettes work
6. His own rigid rules (that we may no nothing about) that he'll totally flip out about if we break them- foods touching, wrong spoon, wrong cup, toys coming out of a box, curtains being opened - again quite random.
7. No independent imaginative play - he would just follow ds2(2) round all day trying to make him cry for entertainment, or ride around the circuit in our garden, or clean things.

Changes I've made:
1. Put a stair gate up on his room so he can have his own space. This was because he said he was angry at ds2 coz he had to share all his toys so all his special non-sharing toys are in his room. This also gives him the chance to play without interuption as I noticed it takes him a long time to get settled into something then if his concentration is broken we're all screwed.
2. Bit contraversial but I've removed most discipline as it was just making him angrier - I don't shout, there's no step. I just talk to him calmly and remove him from the situation til he calms down - he has now definitely learnt to diffuse himself.
3 Really induldged him when the conversation is appropriate (i.e. not about death or cigarettes) and ignored it when I don't want to talk about it.
4. Pushed his boundaries about his rituals / rules - he can listen to his favourite song in the car but then we listen to the next song before going back to the favourite, if he deosn't like his cup he can wait til I've finished my drink before I change it.I think this has taught him how to cope when he doesn't get his own way and that nothing bad will happen if the rule is broken - he did used to get really hysterical.

Recent improvements have been:
1. Approaching other kids to play with them
2. Independent imaginative play -lots of it for up to 30 mins at a time
3. Spontaneous displays of affection
4. Much calmer, less angry - I think because he'sless mis-understood now.

Still to work on - he is hyper-sensitive to smell, touch, and sound and can get really upset. The rules are still there he's just not freaking out about them - so I think its more habit now.
Mostly I just think his stress levels have gone down because I understand him more. Last week he didn't want to come into a shop because it smelled - 6 weeks ago I would've made him come in but now I realise that if I think it niffs a bit its probably really overpowering for him so I let him stand in the doorway - thats just one stress event I've avoided because I understand him more - there must be loads more which is why he's chilled. Sorry I've prattled on a bit. Hope it helps and doesn;t sound too much like I'm bigging myself up. I've also realised that treating him like he has ASD has really helped so he probably is ASD then.

5inthebed Mon 01-Jun-09 20:15:05

You really sound like you're on the ball with it all. More than I was when we were told he was possible ASD (he was dx with autism last Feb).

Well done!

ABitStretched Mon 01-Jun-09 20:21:14

thanks - the amount of tought and planning is doing my head in though! thats why i come on here as i've been boring friends and dh to tears.

5inthebed Mon 01-Jun-09 20:23:09

Thats how I feel sometimes. I read all about things that may help DS2 and his behaviour, but when I talk to my DH or family, they just think I'm being silly and some even think that he will grow out of it. If only!!

ABitStretched Mon 01-Jun-09 20:29:25

thankfully my mum and friend were there this weekend when ds opened his birthday present and declared 'i've got a bell' - it was a bike with a bell on it but because bike bells has been an obsession for months he literally only saw the bell - that did help seal the deal in terms of their support.

5inthebed Mon 01-Jun-09 21:45:51

Thats great you have support.Some family members can be most unhelpful I find.

Barmymummy Mon 01-Jun-09 21:55:39

Thats really really amazing, you should give yourself a big pat on the back! So pleased to see it has changed his behaviour smile

My Ds is also rather partial to 'ice cream' time, whats the fascination in that one hmm

Could you expand a bit on what he does in his imaginary play now? My DS has also come along way in that dept smile

mumslife Mon 01-Jun-09 22:13:00

Message withdrawn at poster's request.

ABitStretched Mon 01-Jun-09 22:28:58

Hi Barmymummy - the play used to be very repetitive- he had about 3 games:
1) copying anything he'd seen on fireman sam
2) playing drs - but that was very narrow routine of me saying what the problem was and him putting a plaster on it (even if I said it was a cough!)
3) playing tea parties - which involved him going to his tea set, brining a plate and saying here you are mummy.

I've done a few things to help him here. First I pushed the boundaries of the existing game eg asking if maybe I needed a prescription,was there any other medecine etc etc. Secondly I have not got involved with playing with any of his new toys he got for his birthday because he just gets stuck in a routine of copying what i do. And i have introduced new games we can play together. Having his own brother free space helps him get totally absorbed in a game. He's still zoning out but instead of doing it while rubbing his head on a toy drill he is doing it while fully absorbed in his toy. Early days so can't be sure he's not repetitevly playing the same game but it sounds good when I'm hovering outside the door. Really interesting coz his little toys have conversations about his life. I would say that the games don't always match the toys - e.g. he might play mummys and babies using his cars.

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