Heya.

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Thanks for the welcome! Yeah, I am aware. I think it's me. I seriously do. If it was totally genetic, it has to be me. I am the black sheep in my family, the weirdo, the one who says what no one should, etc. Being that this is so noticeable, I would totally be aware if there was ANYONE in our family who looked anything like Kai. And I'm the only one.



Thank you for the response.

I found SOMETHING about the bipolar link. It's not what I originally had, and it just briefly touches on it, but it's at least a suggestion.

Possible Bipolar Link?



Thank you, TrubPotto!

That is my mission in life - just make his better somehow. I want to "get it" when he's sad or lonely, and when he's happy about goofy things that other people don't think about.

Yes, Kai is very lucky. He has an AMAZING dad. His mom ain't so bad herself.

It took his dad a little while to come to the conclusions I made about Kai, and he resisted it, and came up with GREAT arguments against getting a diagnosis, however, when he saw that things were getting really noticeable and unfriendly at school, he couldn't deny it anymore. We talked to the school, and they said they'd send a specialist to observe him in January, so that if he needs some extra accommodations (most likely a 504), the school will "get right on it". Well, moving into April, and the school hasn't done jack, so his teacher (who is extraordinary) suggested we get him seen by a private professional if we wanted to see something move sometime in the next 2 years.... After that, it took me another month to decide if we should just "know" and keep it to ourselves, or if we should go through with it, and well, you see how it's turning out.

Thanks again. I wish more people paid attention to the kids - and the teenagers!

I ask Tony Attwood this question as bipolar runs in my family and know of a few people on the autism spectrum who also have, as we all seem to have mood swings etc.. this question, answer may help explain a little...

Question to Tony Attwood:
Mood swings (Bipolar) link to aspergers !
Everyone I know who has aspergers seems to experience some sort of mood disorder from mild to manic. Which often seem to be brought on by feelings of deep despair, loneliness, being totally misunderstood. Manic symptoms include bursts of rage, extreme happiness, increased energy, hyperactivity, distractibility, sleeping too little, and obsessive behaviors.

One of the hardest things for us Aspies to understand and deal with at times, can be our emotions and triggers.... to me its almost like a switch, and I can just change - withdraw, become angry, paranoid, happy, even just laugh for no real reason, you do learn to control as get older, but feel parents with children find the emotion triggers quite difficult to understand...

I myself have a experience all of these at some stage, just really wondering is there anyone who has never experience any of these feeling with aspergers. Do we all experience them and some of us just cope better - looking for answers, please help would really appropriate any response to this.
Kind regards asplanet.info
_________________________________________________________________________

Response:
Dear Alyson
Thank you for your message and very intriguing question. I think that people with Asperger's syndrome have many issues in relation to emotion regulation and perception which comes from my clinical experience. However, new research on the amygdala (a part of the brain that is involved with emotion regulation and perception) has indicated that those with Asperger's syndrome can have difficulty managing their emotions. I am not sure if the characteristic is one of bipolar or manic. I prefer to describe it as an intense emotional response that is difficult for the person with Asperger's syndrome and others to control. A person with Asperger's syndrome may very quickly move into an intense emotion with a relatively minor trigger.I recommend Cognitive Behaviour Therapy (CBT) for people with Asperger's syndrome to help them use their intellect to manage their emotions,I have a whole chapter on this in my new book 'The Complete Guide to Asperger's Syndrome' published by Jessica Kingsley Publishers, with more information at www.jkp.com which will provide you with more details. I have attached that chapter for you.
Chapter 6 - The Understanding and Expression of Emotions.doc......
Best wishes Tony Attwood

Can view Chapter 6 under this link:
Emotional Chaos, Understanding & Expression of Emotions..
http://asplanet.info/index.php?option=c ... Itemid=110

Thank you so much for that information! It really does help, and make me ask more questions, too.

I think that I will get a lot of my questions answered tomorrow - I'm having a hard time sleeping, thinking of all the information, but again, you (ALL OF YOU) have been extremely helpful and friendly, and I really, really appreciate that.

Thank you.

Hi!

Welcome to Wrongplanet!

I hope you enjoy posting here!

Welcome! This is a wonderful place for you to find out more about the spectrum. There are several families here, and lots of parents.

Thank you. I really enjoy posting here. It's so active and I feel really comfortable here. I'm paranoid that I am annoying, though. LOL.



I think it's so awesome to see other parents. Really. And it's good to see what works for them and what doesn't, because that is one of the things I really need help with.

Thank you for the welcome!

That's ok!

As long as I can attempt to understand all the points that you try to get across, that will be fine.

To WrongPlanet!! !

OK. Well, I'm back to give you an update about how the my son's appointment went last week. I'm really, really annoyed. REALLY annoyed about how it went.

First of all, it was more like an intake than an evaluation. I expected some kind of observation to be done, and it was not. We drove down there to answer questions I wish I could have answered over the phone. The questions were about the history of his life. Somehow, this shifted to the history of my life. I could discern which questions were relevant to why we were there, and which ones weren't.

Kai goes to school, he sees kids everyday and tries to interact with them often. He also goes to a Hip Hop class (don't laugh, he loves it) where he sees more kids, and tries to interact with them (he's a little more successful in that setting). It's not like I hide him away in a closet. The CLINICIAN asked me how often I take him to "play dates". I told her never. She asked why. I said he goes to school and extra classes and I don't feel like I need to go out of my way, simply to be judged by the soccer moms that parent the other kids in his class. He spends about 20 hours a week with other children, outside of our home. I do not have a niche in this town, and I avoid most of the people here. She told me that my inability to interact with the other parents so that he'll have other kids to play with, has stunted him somehow, and is vital for the success of his "treatment". She said that my own social hang-ups are where he has learned to be socially awkward. I just wanted to be like, "What? Are you calling me a bad mom? What is YOUR deal, lady?" But instead, I nodded stupidly while she asked the same questions over and over again, not in different ways, but the same exact questions. This is where it gets really sh*tty....

She wanted to know why I was so "well-read" on this obscure disorder. How did I come to the conclusion that he needed to be evaluated for AS? Essentially, why was I so prepared? I said, "You're right, it is a relatively obscure term, and I had never heard it in my life before last year. His teacher told me that she was concerned, and why. I looked it up on Wiki and it looked pretty accurate to me, which is why I prepared the list to give to you with the characteristics pertaining to the issue." I was offended with what I felt she was insinuating.

Did she think I just surfed around the internet looking for things that I could take my kid to the doctor for? Does she think I am a Münchhausen by Proxy mom (and I only know that term because of Law and Order)? She's a frickin' jerk.

It was her "inconclusive conclusion" that he most likely had ADHD. WHAT?! Kai is the ANTI-ADHD! She disregarded my entire list (the one in my first post), pulled out 2 points that the teacher listed, and that is what she said. "Well, his teacher says that he is impulsive and occasionally blurts out comments that don't relate to the topic at hand. It seems to me that he may not be paying attention." She said, "I think we're on the wrong track. He doesn't sound like a "little professor". He has a speech delay... but I guess we should try to get a hold of his records and it wouldn't hurt to give him the (*I can't remember the name*) test."

1. He had hearing loss due to recurrent ear infections due to small anatomy in his ears. We had tubes put in, but his speech was already affected.
2. Kids don't have to be savants to be autistic.
3. What about the other 30+ things that were on the reports from his teacher and myself?

And lastly, she says, "This test will be administered in around 2-4 months. Then we will all get together in about 6 months to discuss the results and make a formal diagnosis, if there is one. There is a really long waiting list."

That twit.

Anyway, there's the story. I am already looking for doctors for a second opinion. Just thought I'd let you know. Anyone know of any decent docs in the Seattle/Olympia/Vancouver (WA), or Portland area?



And thank you for the welcomes larsen and richie!

Welcome to our world (sigh).

Sorry you had such a bad time but it's quite typical of a diagnosis stage. Practitioners hate it when you try to present them with a diagnosis as it bruises their ego - they'll almost always NOT concur.

My eldest was initially diagnosed with ADHD. He's not at all hyperactive - but that's ok because he was specifically diagnosed as ADD - but since ADD and ADHD are grouped together nowadays, it's clinically referred to as ADHD.

Unfortunately you and the school won't receive any funding for ADHD, so you need to persevere if you want special education concessions.

I would agree with the play-dates bit. Not that you're a bad mum or anything like that but that play-dates definitely help the kids socially. Stay away from soccer mums though. Maybe consider getting a school friend to visit after school for a play.

Even if you do get a different diagnosis, it's possible that they'll take the speech delays as HFA instead of Aspergers. If they do, don't worry, you get better funding from that label anyway - and the help is otherwise the same.

Thank you for the response. It's a little more encouraging. See, my eldest has ADHD-I, and I know what hyperactivity looks like, too. Believe me, I would know.

After further reading, I thought that under current diagnostic standards, he would most likely be considered HFA, too, and I wish I could have brought that term to the table first, before AS... I just had no idea. No one ever suggested anything but AS. I know it's just a "technical" distinction, and I don't get wrapped up in that crap, I just wish I knew what to expect at the time and had something better(?) to say. Grrr.

I will think about the play dates thing. You know, let me get really honest with you, without feeling judged (right?).

I want to protect him. I know I can't. I know that won't help him. I won't disable him with that. But the rejection hurts. It hurts for him, and it hurts for me. I don't want his friends' parents to say, "Don't play with that boy." I don't want them to say, "No wonder he's 'weird', look at his mom. She must be doing something wrong." I am not ashamed of my kid. I am exceptionally proud of him. For everything. We went out for ice cream when he learned to zip his jacket. I wish people weren't "perfect", elitist a-holes.

I wish I could magically create the kind of people that we need in our lives right now. Friends, parents, doctors. I know no one is really reading this thread anymore, but I just wanted to say that you guys, all of you, are part of my solution, and I am very grateful.

<3

I know exactly where you're coming from and I can understand your wish to protect him. You're a very good mother to consider his feelings like that.

I don't think that protection is the answer though. Unfortunately, sheltering a child from the world just makes them less prepared to face it.

He needs to be in a position where he can learn what is acceptable and what isn't.
1. What things he should try to change to fit in better
2. What things he should not tolerate from others.

Bullies exist everywhere in schools, parks, workplaces etc. They're with us for the rest of our lives. One of the best skills for an aspie to develop early is the ability to identify a bully and keep away from them.

It's also hard to determine what a good friend is like (compared to a bad friend) and what the difference between joking and teasing is.

Only repeated exposure to social situations - both good and bad - can do this.

Primary school is always difficult.
A lot of parents feel that there's more protection in smaller schools. I disagree.

I was fortunate when I got to secondary school because I fell in with a group of "nerds" whose numbers were good protection against bullies. They were also all very caring people and even though we've been out of school for 20 years, we are still in touch almost weekly. I'm grateful that my parents sent me to a bigger school because it increased the chances of my meeting like-minded individuals.

I know it's a difficult thing to watch your child get picked on by their peers but which would you rather? Go to a park, let a little happen, then jump in, explain and assist - or have it happen at school out of sight and probably completely unknown to you? (my son never tells us much about what happens at school).

This is a great point.

The only thing I have left to say is the jump in, assist, explain thing is awkward for me (I do realize that this is MY problem). What do I say? "Oh, don't mind my child, he's autistic." Would this alienate him further? Also, when I mention that my eldest has ADHD (to the people who need to know), they give me this look. The look like, "Diagnoses like that are passed out like candy. Your kid is probably just fine. Maybe you're looking for excuses for his aloof, strange, or at times, rotten, behavior." I guess I think the reaction would be worse, even though there are clear differences between Kai and other kids.

Have you ever received that kind of narrow-mindedness - the cynicism that you do not know what is best for your kid - that you just heard a doctor throw it out and you hung on to it? And then you just toss pills at him and voila - zombie kid? I call total BS on that, but it happens to me, and yes, ADHD is a lot more common, and acceptable than autism. So I am concerned that when I have to say something someday, it's going to be awful. I don't want that person to think my kid is disabled or a loose cannon.

Why does it feel/seem so complicated?

Sorry, I think I might not have explained well enough.

I'm not suggesting that you explain anything to the antagonists. I meant to explain to your son either along the lines of....

a. You have to take things in turns, it wasn't your turn, that's why they got angry.
b. Those were just bad boys, what they did was wrong. If someone does that to you, you need to tell mummy or a teacher.

There's no reason to go dragging the diagnosis out unless he does something that will render him socially impaired. Even then, sometimes a little white lie is easier.

example: My 7 year old son had a meltdown while playing at a playland last weekend. He was in a foot-propelled bumper car and started bumping into another child's car and screaming at him. He was as angry as I'd ever seen him. I went down and gently picked him up and calmed him down but never quite found out what triggered the outburst though he said his hand was sore - probably from thumping his fist down.

We were at a birthday party and the other parents looked at me shocked. I told them that one of the bumper cars had run over his hand. It was a white lie but it was more socially acceptable than saying that he just had an outburst for no obvious reason. After all, I didn't want them to tell their kids not to play with him anymore.

Welcome to WP!

Thank you, Tim!