Can they get more autistic?
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| Thu, 06-23-2005 - 3:17am |
I have been toying with this question, as I have watched Cassian over the past year. He has really been worrying me since about February. He tantrums more, seems to stim more on books, often has worse social interaction than he did by his 5th b'day in November. We started meds in April, and there was some improvement in social stuff, but also problems with aggression and impulsivity at higher doses. The lower dosage of Lexapro does help some, but the effects are not what we had hoped for his mood tantruming. We are going to try a different med this summer (Zoloft) in hopes that we can get him on a high enough dose that his tantrums, obsessiveness, and social interaction improve without the deliterious effects.
One thing that has changed our life dramatically is my pregnancy. I had to stop working so intently on his in-home program in January because of nausea and exhaustion. I still do quite a few hours a day with him and have stepped up time on this in the summer. Summer is so far much easier for me because I am in charge of giving him all his educational and therapeutic experiences. I also feel that his experience in school this year was not extremely positive. He seemed to get "more autistic" the farther into the school year he got. This could have a lot to do with his teacher, who seemed to think that his autism was primarily a discipline problem. The OT at school basically sucked. The Speech Therapy was mediocre at best. When he came home, he was also less engaging. Before school, we had this kid who wanted to interact with his parents. Now, he would rather stim on books or videos. His verbal responding is also much worse. You have to ask him things over and over. Eye contact is worse. He monologues more. He asks questions over and over and tantrums when he gets the same answer he doesn't want. He marches to his own drummer more and more, ignoring others' input.
One of Cassian's major issues is not being able to delay gratification. He tantrums even when told he can have something "later." He will be allowed to choose a dessert for after his evening meal (2 hrs away at the time of shopping). He's happy for 5 mins, then looks in the shopping cart and asks for the dessert. He cannot seem to comprehend the idea of waiting for what he wants. I have tried everything to teach him this: dramatic play, writing down "rules," songs and books about waiting for what you want, etc. In tantruming, he will verbalize a lot now and say things like, "Mommy and Daddy hate me." Anything he cannot have "right now" he hates at the moment of tantruming. He throws himself on the floor and says he is going to die.
We have been using more traditional ABA training methods this year, and my suspicion is that this is one reason he has regressed. Not that ABA is bad, but it may be setting up power struggles with Cassian, and ABA has never had much success at teaching real "social intelligence."
His toileting is better at least. He will now take himself to the bathroom and doesn't have accidents. We still need to work on his wiping and keeping his clothes on after toileting. He gets mad at me for reminding him of these important steps. He would be much happier if I let him run around naked, I think.
I know that having a new baby in the house is going to probably make Cassian even worse, but it is hard to tell how much this is affecting him now. He talks about his new brother inside my belly with interest and includes Tristan in a lot of his imaginative play, but I know he cannot anticipate how a new baby in the house will affect his life. We are working on Cassian's new bedroom and his new "castle bed", which also excites him.
His motor planning and cognitive sequencing are really improving, which could be the basis for a lot of his tantruming. He works out plans now and then gets angry when they cannot be brought to fruition right now. Perhaps the worst hurdle is the fact that he cannot get into his head what "no" means. We are always consistent, but he just cannot fathom that some things won't go his way.
Anyway, I was wondering if any of you had seen this sort of thing in your kids at some time. It is really puzzling and worrying me, and I partly blame myself because I am pregnant and cannot do what I was doing with him a year ago. These changes make me doubt that having another child was a good idea, and I have a very bad feeling about how the multiple transitions of this Fall are going to affect us.
Suzi

Suzi,
I wanted to respond to this but only had a short time. I will try to respond more later.
Short answer - yes I have seen it and I think they can. It happened 2 different ways.
1) With Mike in particular as he got older and stressors got more significant he became more autistic. I am talking autistic symptoms that we had never seen before. I truly think something changed in his brain, though it could be stress, he is not the same boy he was as a baby at all. He had a "regressive" or change period around 1 1/2, and again around 7.
2) then with Cait (and this sounds more like Cassian) she becomes more autistic everytime she has a bad teacher. The extra stress just makes her regress. Most notably when she was nearly 7 and in 1st grade. As a toddler and preschooler she would line objects, tantrum, some self abuse, etc. She made great progress and by the end of Kindie she was just quirky. Hadn't lined objects since 4-5. Then came Mrs. Howell. 2 weeks in her class and Cait was tantrumming and stimming nonstop. Lining objects again. She would strip in timeout. Was hitting and kicking walls, breaking things, and sometimes hurting herself. Her language skills and social skills went down too.
This was a teacher who thought all of cait's stuff was behavioral and didn't buy the autism diagnosis.
This year we had a not as severe a regression like that but it was definitely there. The teacher was very nice, tried to be understanding, but often just wasn't getting it. Combine that with increased stress of 5th grade and boom.
Nice thing is in the past, in the right placement and interventions Cait has always bounced back. I know as she gets older the stress will be more there. She may stand out more from her peers, but as long as she is happy and comfortable in her skin again and sweet and helpful, I don't care if she stands out as odd.
Renee
Hi Suzi,
First of all, please try not to blame yourself. You are so knowledgeable and such a great mom and you have a lot on your plate right now with your pregnancy. You seem upset and I hate it that you are feeling so badly.
My son is only 3, but I can tell that changes, and lack of proper OT/ST seem to make him "more autistic." I'm sure you know this better than me. But I just want you to know you are not alone. Eric was doing really great the entire time he was on EIP and getting full services. But when he got dropped from OT and our beloved ST moved away and was replaced by someone less beloved, Eric has gradually slipped. Stims we thought were gone came back. Echolalia we thought was gone, came back. This all says to me that to do well he still needs the full complement of services, despite the county's view that he is "doing so well." It doesn't take a rocket scientist to see that he does well BECAUSE of the therapies etc. But that's another story...
Anyway, added to this was the "stress" of potty training. He's doing great with that and is almost completely trained now, except at night and still has some problems like your son has. But overall, I am pleased. I have come to see that when Eric is learning a new skill, some of the old problems come back. Renee has commented on this a few times and our ped neuro said to think of it this way: when NT kids have changes in their lives, they may revert to thumb-sucking or carrying a lovey around when they had stopped doing those things. Our kids stim or revert to other old behaviors (or tantrums) instead.
In Eric's case, this seems to make sense. The doc told me to get used to it, and not be surprised if this happens each time there is developmental growth. He kind of made it sound like a signal of a good thing, in a funny way. He said once the new skill is intact or they get used to the new environmental change, the stims/behaviors fade again. Maybe this is what is going on with Cassian? As you said, he's been working on his motor planning and sequencing.
Something else I noticed which sounds like Cassian's case too. When these regressive periods come on, increasing floortime for us has helped, if for no other reason but for me to get a clue about what is bothering him. For example, Thomas the tank enginge is afraid to poop on the potty. Thomas is afraid of the loud noise of the weed-wacker, that kind of thing. It gives Eric an outlet, I guess, for his fears that is "safe." It sounds like you are doing a great job of this with Cassian.
I "mix and match" therapies and find that for Eric, for adaptive behavior, like toilet training, eating and sleeping issues, I usually have to do ABA approaches. But at the same time I work it into floortime too. One without the other doesn't work for us, it seems.
I'm expecting a big regression this fall too, for different reasons. We've just started with new OT (b/c it was obvious he needed it NOW!) and will start with the new ST in July. In August school starts and he begins his new public pre-school TEACCH oriented program. It's going to be at a new school, new teachers, new classmates. It will be hard.
I know you are worried about your new baby. But if it is any comfort, I have heard severals moms say that a sibling actually helped their ASD kids do better, despite a rocky initial rivalry period. DH and I had pretty much decided Eric was it, but after observing a friend with an older ASD child and a younger NT child, we are reconsidering adopting again, maybe when Eric is older--5 or 6. So hang in there.
Suzi, you are such a smart woman and such a dedicated mom. I think you need someone to pamper and mother you a bit right now. I hope you can enlist a little support for yourself so you can rest and take some TLC time for yourself.
I am sending you hugs and thinking about you.
Katherine
Suzi,
I am such a beginner at this but Chase often has very autistic episodes directly related to his stress level. With school out he has much less structure to his day and he lines toys up daily now rather than occasionally. Maybe due to the pregnancy and the changes it has brought about in Cassian's every day life, compounded with his inability to articulate his feelings it has become too much for him.
When I took Chase for eval for tics to neurologist he met with the asst. first and she went on about how charming my son was and he seemed fine to her. The moment the neuro stepped in the door every tic and autistic trait Chase has took form in front of us. The asst. looked at me bewildered. He was rocking side to side in his chair, started monologues on numerous subjects and sang repetitive songs in pitches not pleasing to the ear. When he is around very strong personalities(loud, in your face types) his austism increases in direct proportion to his stress level. Cassian is very smart and knows changes are a comin' but his outlet for that stress will inevitably be arduous. Good luck and I hope the rest of your pregnancy goes well. Sincerely, Vicky
Dear Suzi,
Yup, stress is the problem for sure. Bad teacher, new baby, toileting, changing drug levels, lots and lots on his little plate. Probably everything you wrote about is contributing. The more stress, the less reliable the sensory information they are receiving. Stress is very toxic to their (and everyone's) systems. Also, as he matures he understands more about what is going on around him (that's good!) and his fear about the future and the bigger picture can be larger.
Malcolm regressed badly last year when he was in a class where young, inexperienced teachers were given a class of too many children with too many disparate needs and the entire classroom slowly fell apart and became a chaotic mess. Malcolm was doing so well at first and held it together for a long time, so we didn't KNOW anything was amiss. Then his behavior started to really fall apart at school (but apparently nowhere as much as other kids in the class, so for a long time we didn't hear about it) Finally we started seeing regressive problems at home that we completely did not understand. And then the school finally lets us know he was out of control WAY after the fact and "What's happening at home?" Nothing, home was just fine. GRRRRR. I lost it, went totally ballistic on their asses, screamed and yelled and demanded and they all jumped very high to accomodate us --- and 3 months later Malcolm was great and everything was fine again. Took me a load of butt-kicking (my husband took to calling me "Mama Grizzly Bear"),plus we looked for a new school immediately. Long story short, new school is beyond brilliant and our child has made so much progress in a year that we hardly know him.
As of next week, he starts day camp with NT kids and non-specialist counsellors. We will find out how well his new skills transfer...
Just my opinion, but by the time the new baby arrives, everything may be really better. You have time to work with him on teacher and soothing nerves and stress, also he is going to love the new baby. And be excited about being the "bigger" one. The fact that he is pottying well is real progress. He will need to learn new skills about delaying gratification and that is a hard one for our kids. Takes practise, practise, practise.
Good luck to you. I echo Renee and Katherine in my admiration for you and your hard work with Cassian, and feel that although this is tough, you and he will figure out what to do next. It is discouraging when progress does not continue in a smooth linear way, but these kids are not predictable or in a science lab (nice as THAT would be). I just always try to remember how much harder for Malcolm it is to feel out of control, and my empathy has gotten me through some very distressing times.
Sara
ilovemalcolm
Hi, my name is Tia, I'm new, (intro posted below). Obviously I can only speak from my own experience with my son. Nate is 9 and he seems to have gotten much worse lately. He is newly dx'd pdd-nos and his therapist is having us tackle, imho, too many issues all at once. He has been lining things up again, become more withdrawn, more upset, more anxious, more of everything. Topping that off school has ended and he thrives on structure. No matter how much structure I provide at home it isn't "enough". I also have 3 other kids that don't like living by a strict schedule. I think stress definitely plays into how bad their behaviors are. I know mine is stressing big time and this is the way he shows that.
Not much help, I know. We have an appt today and I'll be discussing these things w/ his dr and trying to see if he knows of any solutions... Hang in there!! Tia
Tia
"All or nothing, baby!"
(((((((Suzi)))))))
Hugs first off. To say what you ae going through is hard; would be an understatment in the league of "Mt. Everest is big" or "the sun is hot". I feel for you.
Peter went throught several regressions most ly related to inappropriate school placement or no school placement. hen the issue was corrct, he bounced right back. I think of his development as a little like a stockmarket chart -there are peaks and troughs, but over time; the overall trend is up.
I have a thought out of left field: Have you considered the possibiity that Cassian may have a co-morbid ADD DX? I ask because the delayed gratification/time thing struck a chord with me. I know you are the psychologist, but I remember reading about ADHD for myself (pretty sure I have it) and temporal concepts can be an unfathomable mystery to people who have it. I know I have struggled with these all of my life -it sounds wierd to most people; but I Just. Don't. Get. It. Bills get paid late. My car is falling apart at the seams. I miss deadlines... etc etc...
I don't mean to add to your worries, but I wanted to put it out there and provoke some thought.
-Paula
visit my blog at www.onesickmother.com
Suzi,
I wanted to offer some "hugs" too!! Nathan's been real stressed since school ended. So he's been more autistic lately. And it doesn't help having all these boxes all over the house. He's gets so upset when he can't find something!!
All of his autistic behaviors increase during stressful times too. Just the other day, during one of his meltdowns, he screamed, "I'm having a HARD DAY!!!" All I can do is hold him, and help him to take deep breathes to calm down. He's learning to calm himself down these days....NOT an easy thing to do for him!!
I explain to him, why he's having a hard day, and he seems to understand. Although, it doesn't make the tantrums or behaviors disappear.....but it does help to give him some insight to "himself". He seems confused sometimes, so I've learned that explaining things to him, seems to help in some ways.
And having an NT sibling does help Nathan. He's learned sooo much from Tyler...and he's still learning from him.
Michelle
Suzi,
I had a nearly 5 year gap between the birth of my oldest dd and my younger dd and as the birth of my younger dd drew near I felt very overwhelmed by doubts and fears. I do very much relate to how you are feeling.
I won't sugar coat things- the early years with both a young baby and a child with Aspergers were quite difficult at times. However I am so very grateful I had another child- especially now as my older daughter gets toward the age of independence (she is 15) and I realise how difficult life is going to be for her in spite of her high intellect. I always hoped her high intellect would be her saving grace but I don't think it will be enough to give her the good quality of life I've always wanted for her. I think my dd is lucky to have a sister who loves her and may be a support for her when the going gets tough. Don't second guess your decision to have another child- ultimately it will be a very good thing for Cassian to have a brother and you will cope with the challenges just fine.
I am not particularly convinced you can greatly change the outcome for children with Aspergers. That you will not have the same time and energy to pour into Cassian once you have the baby probably won't matter much in the end. Perhaps what Cassian needs more is to learn to be a team player- being in a family with more than one child could give Cassian really valuable life skills.
BTW- my Aspie dd found school really difficult in those early years and was very difficult to handle after school. Some times she didn't even make it to the car after school before collapsing into a tantrum on the ground. I now realise how much it took for her to hold herself together during the school day and perhaps the after school regression Cassian is going through is to be expected. Not that it makes it any easier for you though!
I also used to find that my dd got particularly difficult just before she made a developmental step forward. I would get to the point where I just didn't think I could take anymore and then her behaviour would improve and she would be functioning at a higher level.This was a pattern for her that replayed itself over a number of years.
All the best,
Jenny
Suzi, I first want to say how lucky Cassian is to have you as his mom! You are a great parent! Tristan will also be fortunate to have you as his mom.
Having another child was the best thing that happened to my family, DS#2 is now 3 1/2. I'll admit, those first 2.5 years were very tough and overwhelming for me, but little brother has been one of big brother's best therapists.
I agree with the above replies to your message. I believe that autistic behaviors often worsen during times of stress, illness, and huge steps of progressions. Life seems to be like a rollercoaster ride, with its thrills and chills.
We've seen this with my DS#1, now 6. Joey has made tremendous progress over the past 4.5 yrs (he was dx at 20 mons, has been getting ST and OT since 18 mons, started SNPS at 3, dual enrollment for pre-k, reg ed k at 5). There are days when he is just like any 6 yr old boy, a few quirks, but appears very typical. Then, there are days that are very autistic. It's a real reality check.
We saw behaviors last school year that we had not seen before (eating paper, sticking things in his nose, rolling on the carpet during circle time, screaming tantrums, increased impulsivity), and others that we hadn't seen in a very long time return (hitting himself, separation anxiety). Joey was fully mainstreamed in a reg ed k with a special para. The teacher (excellent, trained in ASD) who was originally suppose to be in the classroom had a baby right at the start of the school year, and after extending her maternity leave a few times decided not to return. There were a couple of subs before they hired a long-term sub, one who knew nothing about autism, and I don't think really cares to know. The special para was out more than she was in, due to health and family problems. Very stressful, even for the NT kids! It was extremely frustrating. For the longest time the para said she didn't think that Joey's behaviors were autism/sensory-related, after I had told her I thought they were. His saving grace was when the school hired a wonderful long-term para sub for the last 6-7 wks of the school yr. She didn't have any prior experience with ASD, but she asked questions and followed through with suggestions. The behaviors started to improve. Anyway, we are still undoing some of the damage done, although it is getting better now (with alot of hard work).