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autism and regression, experiences/opinions/help please??

(9 Posts)
meerkatsandkookaburras Sat 07-Nov-09 14:26:28

i havent posted on here much for a while but hoping some people remember me, i was jennybensmummy or something like that til i name changed.

my ds is 4 next week and was diagnosed autism at aged 2yrs 1 month. He is very typical of autism to be fair with major problems with sensory issues and behaviour too. at 20 months ds lost the little language he had and changed a lot but then over the last 6 months (i guess, around that anyway) he seems to be really regressing, he used to have reasonable eye contact now thats disappeared, his behaviour has got worse, and generally most things except his speech have gone downhil, the speech has improved in what he can say but wouldnt say the understanding has improved greatly at all. all in all i think he is going backwards in a lot of areas, now i know its common for regression in autism etc but the salt insisted to me this usually only happens once and then they dont loose speech again or not permanently anyway just short term while they are concentrating on other things etc. well i guess he hasnt lost his speech so thats right, but his sensory, behaviour eye contact, social skills in general etc have all got worse, not they were ever normal by a long shot but thy have got significantly worse, has this happened to other people, when will it stop getting worse? any experiences anyone can share to make me feel better, i know its all wait and see etc etc but i just feel down as he truely is getting worse and i hadnt prepared myself for that, or certainly not to this extent. we have lots of specialists involved but as were just starting statementing process most have been trying to sort out iep targets, assessing him at preschool etc with view to writing what they can then to help us on forms so not had chance to speak to them about it really im just fed up to be honest as it feels to be getting worse, not the professionals/papwerwork rubbish as i knew that would but actually how ds is he used to look at me soemtimes now its very rare along with everything else going down hill i just wonder when it will stop or will he just get worse and worse. i know noone can answer what wil happen but please tell me if it has improved for you, or lie to make me feel better!!!

anonandlikeit Sat 07-Nov-09 17:42:39

Yes it has got better, but ds2 has spurts of progress & then nothing.
Sensory stuff & behaviour always gets worse at times of change (school holidays, new term etc)
At almost 4 I could not imagine ds2 in MS school, he was still in anppies, not communicating etc, all at a time when the others in his preschool seemed to be coming along in leaps & bounds.
Also don't forget while your going through all the statement stuff its extra stressful for YOU, on top of dealing with all the usual stuff.

meerkatsandkookaburras Sat 07-Nov-09 21:24:32

thanks so much for your reply,i guess you are right, i am rather stressed!!

daisy5678 Sat 07-Nov-09 21:31:16

J went through a behavioural regression at about the same age, though his language progressed well. He would bite, headbutt, kick and scratch someone (usually me or key worker at nursery) every day, numerous times. He ran off all the time; destroyed rooms; threw things down the toilet; stripped all his clothes off; threw things as hard as he could, at people; attacked people with scissors and knives if he could get his hands on them at nursery hmm; locked and unlocked doors; climbed up as high as he could onto things; screamed continually....

He was like a wild animal, if I'm honest, and it did improve, but only gradually and with a lot of the support that school put in in his first year. Reception was horrific. He did virtually nothing that the other kids did and had to be isolated some of the time for health and safety reasons. By Y1, he was 'not-challenging' probably 20% of the time. By Y2, maybe 40%. By Y3, maybe 60%. Now he's in Y4, I reckon that he's doing what the others do and enjoying it and being 'not-challenging' 95% of the time. He's making progress and it has been a long hard road (and when he loses it, he still really really loses it) but things will improve, I am sure of it. Along with behaviour, his social skills have improved so much and is a different child.

daisy5678 Sat 07-Nov-09 21:33:02

Meant to say what the support has been to get J to this place: full time 1:1 support from TA trained in autism, ADHD and restraint (hard but necessary); social skills training; OT; SALT; CAMHS input etc. etc.

Oh yeah, and I would say that I've played a bit of a part in the improvement too wink

meerkatsandkookaburras Sat 07-Nov-09 22:04:16

thanks givememoresleep my ds sounds similar to yours definately!! im hoping things improve eventually, just the thought that with help he could be not challenging a lot fo the time is brilliant, i cant imagine it at the moment but hopeful!! what kind of restraint methods do they or have the staff used with your ds? also does he have adhd type medication? my ds is only almost 4 - 8 days away and counting lol i cant believe my baby will be 4!! the paediatrician has said that he wont consider medication until he is 5 but definately thinks adhd is "obvious" and not to worry as if i want at 5 he can look at medication then?!?! im not sure my feelings on medication though guess if needs must and all that we will have no choice, to be fair most days now if they offered it to us id take it in a shot, though my heart says i hate the idea, does that make sense?

grumpyoldeeyore Sun 08-Nov-09 17:43:23

DS lost his speech at 26 months and we had diagnosed him within a fortnight. However looking back there were signs going back a few months previously eg pushing other children away, freaking out at Halloween last year etc. After the speech went the eye contact but it was 2-3 months later before he started doing repetitive stuff and another 2 months before he starting using his eyes bizarrely, so the features came out over a 6 month period. Then I would say around 7-8 months after speech loss (and 9 months from first behavioural signs) he started to make progress ie he started to learn new things when he had learnt nothing for 7 months and he started getting the point of communicating again (just for requesting), he had a lot of speech before regression so we went from 200 words to 2! He's been making good progress for 2 months but that has co-incided with starting ABA. But I think we caught him at a good moment with ABA as he was coming out of the regression ie he did not seem to be losing more skills and started using a few more words. Our ABA consultant also said alot of people start ABA when the child is still regressing and often don't see progress for the first months, so I think this must be typical that it lasts for several months.

daisy5678 Sun 08-Nov-09 19:07:27

Oh I hated the idea of meds and refused them for 2 year post-dx (ADHD) until he was on the verge of permanent exclusion from school for the violence and destruction. The decision to go for meds changed our lives because A) we were re-referred to CAMHS and met the wonderful psychiatrist who's been a lifeline and who spotted the autism that the original psych had missed hmm and B) the meds have made J much more settled and able to focus. The 'oddness' side of him was much more apparent when the hyperactivity reduced and loads of autism behaviours came to the fore which had previously been masked by relentless activity, but he was able to actually focus for more than 30 seconds on something.

asdx2 Sun 08-Nov-09 20:50:13

dd had a sudden regression at twelve months where she lost all her skills going from a typical 12 month old to a child unable to smile even.
Looking back I didn't spot any signs even though I have a son with autism too. Now I can see that she used to do lots of tapping although she would always say "pat pat pat" as she did.
Dd was unresponsive for 6 months, we started ABA at 17 months at twenty four months on diagnosis of moderate to severe autism her development was between 6 and 12 months (a scatter of skills)
ABA continued and now at six she is a very able child in mainstream with a statement. Yes she has autism but it's not desperately obvious and the professionals who go in to observe her need her pointing out to them grin in her class of 25.
It does and will get better.

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