dealing with new symptoms | Autism PDD

Today's ST was a disaster. It was the first time my dd exhibited any pdd symptoms in session and whoa, she came out with a lot of them! She wouldn't participate, wouldn't answer, counted to 10 a lot, did a lot of repetitive talking, wouldn't sit in her seat, wouldn't look at the ST. The ST had to reprimand her a few times, hold out the stamps that she usually gets at the end for reward, which didn't work and for the first time dd didn't get stamps at the end of session. It was the first time that the ST had to do any real disciplining other than redirecting attention. She had to tell dd to stop her behavior quite a few times (standing in chair, getting out the chair, not listening, that kind of thing)>  I know that it's not unusual, but it is for my dd. She's never acted like that before so it threw us all, ST included.

Then after ST, she started with her fake cry but when I asked her if she was sad, she said she was. So it was like she was doing a fake cry/sadness to express a real sadness, which part of me thinks is a good thing because at least she IS expressing an emotion but part of me is freaking out because it's a new spectrumy kind of behavior I haven't seen before. She layed down on the floor (also unusual for dd) and did her fake cry/whiny thing for a while as I tried to talk/soothe her and then out of all that comes this perfect sentence "I want milk."!!!!

I don't really know what my question is. I guess I"m just wondering what to make of all the ups and downs and new symptoms as they come up, etc. It has seemed for a few weeks that dd has shown more symptoms (behavioral and stims) than before but could that also be because now that I have a diagnoses I can see them clearer and recognize them for what they are? I mean maybe they were always there but I was in denial or maybe I'm seeing more of it than is really there. I don't know.

I really think her symptoms are becoming more pronounced. But at the same time, her language skills (pronouns, etc) are getting better so is it possible that as they progress in some areas, they regress in others? How do you EVER get used to the unknown/changeable quality to all these spectrum symptoms? Sorry for rambling. It's been a bad day for a lot of reasons and this is just one more thing.

I'm starting to feel overwhelmed with finidng the right therapies and making sure she is getting the right interventions, etc. that maybe my stress is starting to impact her. I'm starting to understand that this is never a status quo situation, this life with autism. Thanks for listening and PLEASE help with suggestions or advice or insight if you can.

Sally, I'm sorry you had such a hard time. Ds is doing better in speech from the therapy as well and is interacting well with her, but he has also has his off days. Some days he has not been looking at her (or only doing sideways glances as described in sensory issues posted awhile ago by Owen's mom). Once when she tried to read to him (he doesn't like to be read to) he started to tantrum and bite himself. He has had a couple of not so good times w/ her, but in general I do see him improving so I know it's still all good. Ds isn't dx'd yet, but I have seen with him that he changes often and has bad and good swings. Some days he seems so autistic to me, other days he's so nt. I think you're doing a great job though. You are always on here seeking to learn and understand and doing all you can for your dd. Don't fret! From what I hear on here there is life after diagnosis and much will probably improve w/ time and therapy.

Kellie...when you mentioned the flapping hands, do you know if flapping arms is another trait? Ds often looks like he is trying to fly lol. He doesn't seem to even realize he is doing this.

Amber

Maybe she's putting so much of her energy in communication, she's slipping in some other things. I don't think this is the same as regressing. Our special educator calls it plateauing. The fake cry thing sounds like one of the "normal traits" of a toddler. Maybe since she's dev. delayed she's just now exhibiting a "normal" behavior. Jakob is extremely mild tempered and rarely gets upset over anything, so on the rare occasion that he does try to have a little "mini" tantrum, I kinda like it, cause he's actually doing what any other toddler would do at his age. And yes, for me, it seems since Jakob was dx'd, I definitely SEE the autism more...I think I just , for some reason, didn't let myself see it all before, because I didn't want it to be true.
Amber...yes, hand flapping and arm flapping are both autistic traits....sometimes I think Jakob is going to take flight also. Usually he does it when he really likes something, seems to be his way of showing extreme happiness and interest.My thought on this is first off we now know what the signs and symptoms are where as before we didnt. Maybe in the back of are mind we are still trying to believe the diagnosis ourself so Unknowingly we are more in tune to what our child is doing and what the autistic traits are now and therefore we see more of what they are doing not that they are necessarly doing it more. Also a reason the doctors wait til the child is older to diagnose is because alot of the behaviors can be typical behaviors for a typical toddler. Unless the behaviors are extreme enough it can be very difficult to distinguish between the two, so as a child gets older and the behaviors dont go away then it becomes more evident that it is autism and not typical toddler behaviors or what not. So as the child gets older, the autism becomes more apparent until therapies start to get it back under control.Ms. Steelersfan is right.  All young children do "weird" things but as they get older and more self-conscious, non-autistic children stop some of the "weird" behaviors and the older ones don't.  It becomes obvious over time.  I also agree with her that once you know the diagnosis, you become more aware of symptoms through knowledge and education.  In higher functioning older kids, it is sometimes hard to know whether they are just acting like a teenager or if it is a symptom of autism. 

I would say when kids on the spectrum reach the teenage years in general it is a very thin line in what is normal teenage behaviour, the autism, or something else.  I know I am going thru that with Jeffrey right now and he is not high functioning.  I do agree that once you have the diagnosis it is more clear to you the  symptoms and behaviour that the child has.  Remember the brain is very tricky in that regard.  You only see the things you want to.  It is probably just a coincidence that once you get the diagnosis you see the behaviours.  I know with my kids I can look back and see the behaviours were there before the diagnosis was given.

Tammy

It is not unusual to see some symptoms appear out of nowhere.  Like today in like the last five minutes Jeffrey is a very foul mood.  But guess what?  It is raining here so that could add to it too.    Could be she just feels overly frustrated today.  The only way to get thru that is repitition.  And yes you will have your ups and downs.    I have noticed with my two that if the one has a bad day then the next day it will be the other.  Also if they are too good, watch out.  I call that the calm before the storm.  Hang in there.

Tammy

I can totally understand what you are going thru. I could have witten that post myself. Tj was making great improvements until; he had a 6 month review with First Steps. The therapist were commenting on how good he was doing and then BANG! He has regressed to the point he cannot stay focused, cannot complete task he once could, and behavior issues are horrible. All I get told is that he is making gains in one area-his speech- and probably regressing in the others. Well thats nice so now what do I do? He is almost as bad as when he first started First steps. He is showing more and more characteristics of autism every day.  It gets me so frustrated that I cannot help him.  I hope it all gets together soon. I guess all wee can do is be patient.

 

 

Kathy

Dear sallys,
I can understand and empathize with how distraught you feel.  I felt like ever since Luke heard his diagnosis was PDD, he suddenly blossomed all of these 'spectrum-like' symptoms out of nowhere!  I SWEAR he never flapped his hands or paced in front of horizontal lines prior to his diagnosis!  Oh well.  I guess we must take the bad with the good.  Thankfully, your daughter has a means of expressing herself (even if it is with contrived emotions or TV dialogue).  This will surely help her progress.  Try to focus (I know it's tough) on the positives that your daughter is showing.  It sounds like she really was having an off day, which contributed to her behaviors with the speech therapist.  Good luck and let us know how she's doing.
Kellie

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