Calling all experts on asd, need help please!

[deeeja]

As some of you may know, my ds3 has autism, and is 3 years old. Lately it seems he has been regressing, and I thought he would just progress after a little while.
Well, these past few weeks have been absolutely awful. He no longer uses the single words he knew to ask for things, he has become more violent, and seems to not know me most of the time. He just appears alot worse, and the difference is very noticable. He is like a different child, as if he knows no-one in the house. He has stopped making all eye-contact, hits me if I try to sing a song for him (he liked songs before), he has regressed back to the stage he was at at 2 years old with a few more violent behaviours thrown in. He spends alot of time staring at sunlight streaming through the windows.
Has anyone else had this?
I have an appointment with paediatrician in 3 weeks time, so will bring it up then, but doubt I will be listened to.

Over the years we've seen regular regressions. These have always been followed with a new phase where DS seemed to have progressed (one step back, two steps forward iykwim). But it is awful at the time as every time I always thought "this is it, he's going to be like this or worse forever". I was always proved wrong and it hasn't happened for the last couple of years (he is 12 now). But its best not to be complacent. When you see the Paed have a version of your post ready to be able to explain yourself clearly. If you get more responses here you can say that you have friends who have seen this (not you got it from an internet group!). Also, has anything changed in terms of his environment, routines, diet etc. Maybe he is just low-level unwell because we did see it either when DS was not well or he seemed unwell, it is hard to tell. HTH.

We had this regularly between 3-4 - it still happens now DS2 is 5 but not as frequently. In his case I would say we could almost always link it to diet or illness. It's so worrying though isn't it - as Davros says at the time you always think it's for ever. Like her, we've always found it's been followed by progression though - and in fact only yesterday I was saying to DH that we haven't mentioned the 'two steps forward one step back' syndrome for ages. (Crossed fingers emoticon)

Like sphil most of these regressions have been linked to diet or illness. Especially ones where sensory stuff seems to take over and when it's extreme.

IN ds1's case the worst regression we had was when he was 4- and was caused by peanuts. We cut right back (didn't worry abut him having a little, but removed the ground organic peanut butter he was pouring down his neck) and within 3 days he was back to normal.

We've had to do the same recently with apples. He's allowed them, but not to gorge on them.

Again like the others, regressions seem a fairly strong feature for us: ds3 lost his speech at 3, and his continence at 3.5. he's moving forwards on the speech now, but the nappies are still way beyond him.

We can now recognise when a regression will happen, and sometimes intervene to remove the isues that seem to be related- February half term caused soem problems which were we think linked to his 1-1 being away froms chool immeidately before hand, and we now have it in place that he doesn't go if there's no 1-1. We also notice that before he loses a major skill, he always loses the minor skill of coming downstairs upright first! It's a useful warning sign.

I think ds1 also ahs regressions too, but it's only lately we've cottoned onto that as his skills are more complete, and it's only the disparity between his new schools assessments of him, and where he was before, that has alerted us to it.

I dot hink they're a fairly normal feature of ASD, but they are really ahrd on parents.
Sometimes they can have payback- for example, ds3 is now very obsessive about PC's and withdraws hugely when he is on one- but he ahs learned so many skills from the PC, and actually is showing incredible and quite scary abilities! had we not experienced the pain of the withdrawal, we'd have missed this whole major side to him. But remember to be kind to yourself whilst these are happening, and tor emind yourself that it's OK, not your fault, and a 'normal' part of ASD.

We get this with dd1 as well. She's 3, and every 6 months or so, it seems as though she is making absolutely no progress for a while, and then regressing. It is so depressing when it's happening - as others have said, you feel as though you'll be stuck at that stage for ever. I have lost count of the times I've ended up crying in despair, thinking that dd1 will continue regressing, and that is how she will be forever. It does tend to happen with illness (and dd1 seems to brew illness for weeks before the illness actually comes to light), and also happens before a new skill (or progress in an existing skill).

Interesting what you say about stairs, Peachy - dd1 does this too - she completely loses the ability to start coming downstairs (loss of depth perception?) although if we start her off, then she can sometimes continue on her own.

DS1 used to regress quite badly and it was definately related to illness or development. The early warning signs were that his weakest area (his speech and then his use of pronouns) would go. After regression there usually was a leap in development - its almost like the brain has to shut down a couple of areas so that the new area can develop. Now he is older he still does it but it is more subtle - he becomes more childish and comes out with daft things. Its definately related to either tiredness, illness, growth or stress in his case. I do remember having quite a tricky time with him in the early part of him being 3 - we didn't have the 'terrible twos' we had the 'terrible threes'.

Best wishes

I think all autistic behaviour changes over time and it can sometimes be a case of the 'the glass is half full or half empty' syndrome. My DS now has more temper outbursts than previously but this is because he is lot more aware of himself and his relationship to others and he is starting to flex his emotional muscles. Also he has far less interest in his A-Z books than this time last year but again it is because he has got bored - and being ASD has no social desire to please. I agree that as stated above, as all ASD children are severely delayed in development, they go through the 'stages' at a much slower rate - we are having the 'terrible twos' at four. . I know your problems are real though and we have a concern at the moment about DS' concentration which was never great and now is getting worse. He has been through some changes though in his daily routine so I am hoping this is the reason and that it is only temporary. It is upsetting when you feel you are on an even keel and then suddenly a new storm blows up to knock you off course.

Cyberseraphim and Peachy, I recognise the difficulty that comes with new/added awareness or skills. DS has challening behaviour and can be a right bugger. But I DO see it as the other side of his great interactivity and interest in people. He really lets you know when he likes something or someone and he certainly does when he doesn't!!

I am the pessimist and DH is the optimist. I always panic and think 'oh no he will be doing this/like this forever or maybe get worse' whereas he always reminds me of how many other phases/storms we have weathered.

ha - recognise what you're saying Davros. DS1 became far more challenging as he became more interested and opinionated about the world around him.

And something like learning to imitate- has had a fantastic developmental effect. But the downside is he now sees us doi things like cook/turn on kettles/open doors using keys etc and with imitation- well he copies (or tries to). Hence exploding kettles and plastic bowls in the oven and escapes out the back door.

Yes I agree - even with Mr Passive DS2 this is happening as well. He's learnt to request, which is fantastic and has opened up his world more than anything - but now he demands stuff ALL the time and gets very upset/angry if he can't have it.

This is really interesting as we were told by our paedetrician that after initial regression a child with an asd will progress without further regressions. However, like many of you have mentioned Daniel tends to go off into his own world and regress when he is poorly. At the moment he is off food after making huge progress and we have discussed the possibility that he is regressing at the moment. He went off all his toys for about three weeks, concentrating on sticking two blocks at right angles to each other for hours. However, he has started moving forwards again and has eaten a bit more in the last two days.

We were told that by our paed too Runikka!

If your child has autism he has already done his "regressing". WE look at our sons "regressions" as a stock taking measure. sometimes, especially when he has been doing well, he has to re-group, take a step back and let it all sink in for a while before he can go forward.

remember, there is so much to take in at the age of 3.

dont worry, it wont last forever. keep a diary for the next time it happens so you will know what to expect.