Am I the one on the wrong planet?

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I thought that it was not possible that my son had autism because he smiled, babbled, had words, and was cuddly. Most of the things that caused concern for us very early on were delays in physical milestones. He was diagnosed at 2.5 yrs of age. He is 5 now, and as time goes on, he very much fits the profile for ASD. He really doesn't have rages or meltdowns, but he is becoming a bit more aggressive as time goes on. And he definitely has difficulty interacting with his peers.

Just hang in there. Keep pushing until you get answers. And like the other poster said, he is the same boy, no matter what diagnosis is given! You will learn to accept it in time. Best of luck to you.

I really empathise with you feeling that you have been 'blind'... my daughter was diagnosed at 13, and I still feel guilty that I missed it, but you were not blind, and I was not blind, we are just accepting of the person our child is, and that is a good way to be.

Rages: my daughter never really raged, huge floods of tears, but not rage. My son (he is also AS, and his problems were obvious) did rage, hugely, terribly, violently, and it was really really hard to deal with (especially as back then we didn't have a diagnosis). He is now 16 and is one of the calmest people I know, so take heart.

Two things that helped us, just in case either might work for you:
i) After things had gone horribly wrong and I needed to try and talk through the issues with him, I used to sing him a story of how it had been. I put it into third person as I sang it to him, and he would calm right down and listen. He was younger than your son at that point though.
ii) Fluffys: my son found school extremely hard to cope with. The other kids would needle him to get a reaction, which always worked sooner or later, he'd explode. I cut him squares of fur fabric, and he'd keep one in his pocket, and if he felt rage building he could touch it to remind him that whilst mummy wasn't right there, she'd be with him again soon, and that he was safe and loved. I made lots, absolutely identical, so that if one got lost it wasn't an issue.

Anyway, good luck with it all

We are right there with you. I HATED the thougth of medicating my daughter - but at this point we have to get her rages under control. She is currently taking Risperdal, which worked well for almost a year - they've now added Topamax, as they have increased her Risperdal, and it has helped a little, but not enough. She is currently unable to discuss anything pertaining to something that has gone wrong (yelling at another student, hitting her brother, etc.) even when she is in a calm state to start - she immediately starts to escalate. Her therapist recently tried to ask her about what had happened with her old sitter (my daughter escalated and hit the sitter) - this happend over 3 weeks ago. As soon as the therapist asked, my daughter started to get angry, started yelling and escalating - to the point that the therapist decided to end the session as she didn't feel that it would be a good idea to continue. I had thought that things would get better once school was out and she could decompress And it has, somewhat - we've also sent our son to a summer day camp nearby, so that she doesn't have to deal with all the agitation that seems to result when the two of them are together. She's just not where she needs to be yet.

Out of curiosity, why was your daughter prescribed Topamax? My husband has taken it for cluster migraines and seizures, and the side effects were absolutely awful for him. I was not aware that it is prescribed in a mood/behaviour altering capacity?

[quote="annotated_alice] Out of curiosity, why was your daughter prescribed Topamax? My husband has taken it for cluster migraines and seizures, and the side effects were absolutely awful for him. I was not aware that it is prescribed in a mood/behaviour altering capacity?[/quote]

She was prescribed the Topamax to help get her outbursts under control - the psych said that they sometimes use it as an additional helper / mood stabilizer. She had originally suggested Depakote, but I had already done some reading on it and have seen several references to it potentially contributing to polycystic ovarian syndrome - both my mother and sister have been diagnosed with this, so I thought it best to try a different med.

What types of side effects did your husband have - if you don't mind sharing? My daughter has only been on it for less than a week - we did notice one odd thing already - she wet the bed 2 nights ago (she will be 8 on Saturday and hasn't had an accident since she completed potty training at just over 2 years old). I asked the doc about it and she said that it wasn't caused by the Tompamax - but I wonder, because I did see some references to Depakote (another anti seizure med that they also use as a mood stabilizer) causing enuresis as a rare side effect. This is also the same doc that told me that she had never heard of the issues with PCOS and Depakote, so, I'm not sure that she has many answers however.
I'm not sure that it will work for DD - she's on a low dose (25 mg) at the moment and I haven't seen much behavioral change. Before she was put on Risperdal (about 16 months ago), we had tried Trileptol (another anti-seizure med that can also stabilze mood) and it had no effect at all.

Hi gardengirl,
My husband had severe nausea and dizziness as his body got used to the drug. After the nausea subsided, he was still dizzy, fuzzy, moody and just generally felt horrible all the time. He was able to wean himself back down off the drug after a time (this was several years ago), but may have to go back on it again soon, and has been dreading it.

Your son's symptoms sound a lot like me when I was a child.

If you don't mind sharing, how are you now? Do you still have issues with anger/frustration/outbursts?
Personally, my daughter acts a lot like I did as a child - I was unable to handle frustration and anger- I had no idea why. The main difference is that I managed to keep things mostly under control at school - but once I got home, I fell apart. I have noticed that the older I get, the easier it gets to manage things .

From your post and your presence here it seems you have already accepted that AS may explain your son's behavior. Autism is just a different kind of normal.

When my daughter was 1 somebody suggested that she might have AS and I thought it was impossible. I felt that her shyness just made it difficult for other people to see all her amazing skills. But there was nothing wrong with being shy right? I was totally ignorant of the fact that her skills were classic AS, like loving jigsaw puzzles, stacking blocks, and memorizing all the details of the trains on Thomas the Tank Engine, and so on and so on ...

Many years later when I eventually realized that she had AS (and me too) and then she was diagnosed with AS, it came as an enormous relief. It provided a framework for understanding all the difficulties we had been experiencing. You wrote:

"
my vision of autism has always been the kid that just sits there spinning stuff, has no facial expressions, doesn't talk and won't let anyone touch him ever. "

It's just a lot more complicated than that. And I think you know that by now.

When my daughter was diagnosed with AS, the doctors and therapists discouraged me from telling her about it, but I did and she immediately embraced it. We read the diagnostic criteria together and she agreed that they described her. And it completely changed her perception of therapy, now she understands that she has some difficulties and that the therapist is helping her fit in with normal society. It's impossible to attribute how much of the improvements in the past year come from parenting, teaching, therapy, and my daughter's own effort, but I think the diagnosis has been very helpful.

I hope your son has AS and I hope you share the news with him.

you wrote:

"A few months ago I attempted yet another behavior plan (which of course didn't work). "

This is purely my personal experience and opinion, but I feel these plans were not helpful with my daughter. She became obsessively concerned with the details of the plan, for example arguing over whether she had argued (which was supposed to prevent earning a sticker for that day). In some ways the "plan" became a new source of stress and strife. The only thing that has been really helpful to this point has been endless compassion. Convincing her that I love her just as she is. She can disappoint me and hurt me and i will still love her no matter what.

Good luck.

While I am learning a lot here, and finding more and more that I may be on the more AS side of NT, I do happen to be solidly bipolar (Bipolar II, so I don't have mania but hypomania, a milder version - the down is just as bad for me, though) As I learn about parenting my AS child, I have been concurrently learning about taking care of myself.

I liken Bipolar to being something like diabetes or asthma: usually, an external trigger will set it off though I often will not notice this, and only figure it out later in therapy. In general, my first clue that I'm heading into hypomania is that I lose the volume control on my voice to the point that people start backing away from me, and if I catch it at that moment I have an opportunity to choose: stop speaking entirely and go calm down, or run the whole system through. If I don't go calm down, I get agitated, my speech gets hurried and almost unintelligible as I fly from idea to idea, and then I will start "getting stuff done." The inside of my head gets very busy, like a computer running four or five windows of video at once. I become angry at anyone I percieve is getting in my way, and am not pleasant to be around at this stage - but I have to admit, I do get a lot done.

The worst episode I remember, before I was diagnosed, centered around my son's 4th birthday, where in the space of two days I: created a paper-mache pinata from scratch (by myself, because my son didn't want to get glue on his hands), researched crafts on the internet, made a magnetic fishing game, made paper pirate hats with paper feathers for all the guests, covered all the plates and bowls with construction paper that I colored to look like barrels, went to the grocery store to buy every kind of Goldfish cracker there was so we would have a full breadth of fish types, drove three places to find swedish fish and gummy sea creatures, made a cake from scratch in the shape of a pirate ship (which fell apart completely, poor planing/execution a not uncommon result of mania) made two cakes that looked like a seaside with playmobil pirates while screaming bloody murder at my poor son, made punch from scratch, went to my garden and dug up carrots and picked tomatoes and then cleaned them because I had decided we needed multi-colored ones instead of the ones from the store, made dips for them, drove my family to what I thought was IKEA - after driving an hour, realized we were going in the wrong direction and gave up - drove all this junk plus more to a local park and decorated all the parts of it that we were using, made balloon-animal swords for all the kids and blew bubbles for them to attack...there was more, but I don't remember it all.

Then I was in bed, completely immobilized with crushing depression for several days, barely able to eat, totally unable to wash. The entire episode-loop lasts about a week to two weeks for me; I have no idea if I'm a typical bipolar, but from what I read, I'm not that far off.

I can see where there are some similarities between AS and Bipolar; the major turnaround in my life came from recognizing triggers, recognizing the start of an episode, and figuring out what steps I could take to stop it - and to have a strategy for when I'm completely blindsided by an episode, too. I don't do medication - did it in college and felt as though I was wrapped in bubble wrap and couldn't feel anything (keeping in mind that I have a very mild and controllable version of BPD; medication is certainly in order if your life or safety are at risk; thus far I haven't done anything worse than embarrassing) Cognitive behavior therapy has helped me become as self-aware as possible, fortunately also my husband is now on alert and warns me when the vocal symptoms start up, so I have a choice in the matter.

Know thyself is a good rule in both cases. It's a definite challenge to help a child in either event, because no kid is really self-aware, that's part of growing up.

Good luck; I hope this helped.

You weren't exactly wrong in your conclusions. He almost certainly does have a sensory disorder. And not looking people in the eyes may be a form of shyness. But everything all together likely forms a bigger picture.

I think DW probably hit it on the head when she said it wasn't what you were expecting autism to look like. I went half crazy trying to reconcile my instinct that something about my son was very different with what I was reading about autism. This was 8 years ago and the information out there was much more about "classic" autism. He was so smart and healthy and smiley, it didn't fit anything I was reading. It was only later when I found out abut HFA/AS that it started to make sense.