I am so confused

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Hi

I am new to the board. My son, who is 6.5 years has recently been diagnosed with asperger's.
We have honestly felt something was always going on with him from day 1 and always felt in the back of our minds that it might be Asperger's. The years went by, being in denial was one thing we were really good at and we kind of just hoped that everything he did was a phase. Many things were phases, but then new issues would creep up that had us concered.
We fast forward to Fall of 2010 and he is diagnoised with Tourette's syndrom, which we were very concerned about and finaly made the steps for him to see someone about the possabily of Aspeger's as well.
The diagnosis finaly came to us a few weeks ago and although I knid of always felt he has some Asperger traits I still find myself in denial.
I do know that no 2 people with Asperger's are the same but I can't help but constantly compaire him to the other children I know with Asperger's and then I start to second guess myself and feel like we need a second opinion.

Has anyone gone for second opinions? Has anyone else felt the way I do?
Does anyones child do ok at movie theaters, but struggle with being in the class room?
My son has a really hard time at school, but we can take him to loud places like Monster Truck shows(with ear protectors) and he is loving it.
My son also loves to play with his friends, and always wants to play with us, Is it common that some children are very social with their parents and with their friends at school(at recess especially) and wanting to do play dates on the weekends?
But on the other side he does really bad at parties where there are a large amount of people. He cries a lot, has melt downs and can get agressive if the party goes too long.
He went to a party at a play zone arcade place this weekend, I stayed with him the entire time and he seemed to do well. But he was having fun and was with me.

I guess I just need some clerification that my son can have Asperger's even with having a strong desire for being social with others. And I will admit some of his social behaviour is not appropriate, but he doesn't get this, but the strong desire of being with others is there.
Thank you for letting me rant. I feel like I can't really talk to many people about this since no one can understand.

Bridy

My son has a very real desire to be social... though he's not usually successful, unless it's the right environment.
My son loves movies, is not bothered by loud noises.
He likes playzones and things of that sort, and it's successful if nothing presents a conflict to the way he wants or expects it to run..
He does not do well in the classroom...
Does well at parties if he's properly prepared for it/knows what to expect.

I often feel that my son doesn't fall into the "standards" but as you said, no 2 Aspies are the same.

My AS son was a social butterfly infant, toddler, and kindergartener. Always loved people, always drawn to people, and very sensory seeking in pretty much every way. We went to a theme park every single week when he was 3 because he seemed to just soak it up.

But looking back it is apparent he didn't process the input that well. Someone told me to look at the patterns of what was happening after, often as much as 2 days after, and then we saw the pattern better. While he wanted to do these things and was controlling his reactions during them, at some point he had to let it go, and that release tended to come much later and had always seemed like it was coming out of nowhere.

It certainly never occured to us that our eager, social little one was on the spectrum.

He was 7 when it was first suggested, and I was totally taken back by it. But the more I read, the more I knew: this explained EVERYTHING. He'd been "different" from birth, just in this wonderful energetic baby-genius loves life way. He's never been "normal." We just never thought things we found adorable could be warning signs of difficulties ahead.

Those difficulties did eventually come to roost, and everyone had to get down to doing some hard work. It's all good again, but I do miss some of the things we used to have so much fun doing. My son kind of tripped out on them, reached a point when suddenly what he was drawn to became something he rebelled against instantly. That happens, too.

We build up so many dreams with and around our children, and the people around us feed them. It all seems so fun, but I'm not sure anymore. I'm not convinced it's healthy to constantly be told your child will be president someday when something entirely different is in his future. Better to just wait and let the child grow into themselves.

We parents usually have a few dreams to let go of as we discover who our kids really are, instead of who society dreamt them up to be. A version of mourning is actually totally normal, so don't be afraid to feel it.

But, also ... if this diagnosis is right, you'll feel it. You'll finish your research and you'll know. If you don't get to that place, then don't stop asking questions. You want the RIGHT diagnosis, not just "a" diagnosis.

Has anyone gone for second opinions? Has anyone else felt the way I do? Didn't go for a second opinion, but did go through questioning the prospective diagnosis. The psych doing our eval let us know on the first day that she thought it was probably Aspergers. I had never even heard of it, and when I first started researching it seemed that it fit in some ways and not in others. I continued to dig, and as I learned more realized that it was an appropriate diagnosis for my son(s), and was ready to accept it when the official dx came several months after starting the process.
Does anyones child do ok at movie theaters, but struggle with being in the class room? Yes, my sons do fine in movie theatres as long as no one is talking during the film, kicking their chairs or touching them in any other way, and they are engaged with the subject matter. The roles are nicely defined in a theatre. You sit quietly in a chair, which is your space for the duration of the film/production. Unlike in a classroom when there are a million different sensory variables, and intense social interaction.
My son has a really hard time at school, but we can take him to loud places like Monster Truck shows(with ear protectors) and he is loving it. My sons did fantastic at Disneyland, with ear protectors and a structured plan, because they were interested and excited and it was a finite amount of time (we lasted about 4hrs). School is everyday, not nearly as fun, and much longer, and yet the level of sensory stimulation can be on par with a theme park/monster truck rally at times. Have you ever been in a gymnasium for an assembly with several hundred chattering kids' voices echoing around the walls?! ! Terrible.
My son also loves to play with his friends, and always wants to play with us, Is it common that some children are very social with their parents and with their friends at school(at recess especially) and wanting to do play dates on the weekends? Both of my sons are dxed with Aspergers. One often does not readily seek out social contact with friends, and is happiest quietly playing legos in his room alone at home. The other wants to have his friends over several times a week, and follows me around grabbing me for hugs and trying to get as much of my attention as he can. He wants very much to engage with other people, he just isn't very skilled at it. BTW it was just the opposite 2 years ago, with the one who is withdrawing now seeking lots of contact and vice versa. Needs and sensory profiles change over time, and either side of the coin can fit with the autism spectrum.
But on the other side he does really bad at parties where there are a large amount of people. He cries a lot, has melt downs and can get agressive if the party goes too long. Me too! Although I can do great with one or two familiar people. Same for my sons.

The bottom line is that you as his mum know him best. I wouldn't reject the dx just yet. I would do a lot more observation and research, and then follow your instincts.

Thank you very much for the replies.

I know he has many Asperger traits, but I guess because I know other boys with Asperger's and they seem to be higher on the spectrum then my son so I start to question if he has it or not.

Things I have noticed is that he is loving, but the kisses I give him have to be on his terms, like how many he gets and where I give them, and he loves to be huged very hard all the time, there is never that soft hug like I get from my daughter.

and speaking of school gyms, he told me one day he had an assembly and he had to leave to go sit in the class room. Thankfully the teacher saw him loosing it and let him go back to the room.
And his P'doc and the OT told us they thought he had Asperger's within taling to him for 5 minutes, they hadn't even done any assessments on him. I would assume because they see so many children they wouldn't just be say this to us.

I honestly just don't know how to move beyond this point. What do I do now?
everything before this was trying to figure him out and now that we have I don't know what I am suppose to do.

We have the school involved and his P'doc who is actualy head of the Tourette's clinic along with teacher in the Tourette's clinic meeting with the school in May. So that part is moving along.

Also, when and if has everyone told their child they have Asperger's?

Hey there,

I can empathize with what you're going through. My son is almost 12 now and it has been a very long, tough battle.

Some suggestions I'd like to make:

Really get to know what Asperger's is like for your son. If you read a ton of books about it, you will really understand what the world is like for him so that you don't have unrealistic expectations. The problem I had for so long is that I didn't truly understand it and I would be very frustrated with him. This doesn't mean I'm no longer frustrated, but I certainly know how to best handle situations and how to avoid a good deal of the triggers that impact him negatively. There is a list of recommended reading on this Parent's Discussion group. The Oasis Guide to Aspergers is wonderful. There is a free e-book online that I'm reading now and it was written by one of the members here. You can find it online at: ://www.asdstuff.com/grats.html It's a great read, and not everything may apply to you, but it's really worthwhile, in my opinion.

Make every effort for socialization to occur. Maybe this is not true for all our kids, but for mine, it has paid off in many ways. I have gone out of my way so many times just to make sure my son has successful playdates as he grew up. I would drive kids back and forth and make sure we have all the latest toys and would take them out, etc....all to make it be known that our place was awesome and my kid is awesome. Yes, this has cost me a lot of money, but so do social groups....so I kind of made it my part time job to run his social calendar. There were tough times for sure. It hasn't always been a smooth sail...but it has been worth it because he has friends. I still wonder if some of them will stick around for the long haul....as they get older, they can tell that he's different....but so far, they have stuck it out for the most part.

Don't let the school blame your child when things go wrong. I'm very guilty here. It has been a huge learning curve for me. I knew my son has ADHD but it took a while to diagnose the AS part of it. I fell into believing that just because the school was making an effort to help him, that this was sufficient. It sometimes isn't. There is a portion here in this group that sets up good IEP goals and ways to meet the needs of kids. I wish I had this information years ago. But, better late than never.

Find out what isn't working at school. For my son, it's handwriting and socialization....and some other things too, but those are the biggies. Make all the necessary accommodations. Extra time on tests, use of the computer, a scribe for my child to dictate answers, oral examinations are all helpful. We also provided him with OT, Speech Therapy (for pragmatic skills), Vision Therapy, brain exercises (www.brainhighways.com), and dietary changes. I have refused to give my son meds at this time. I am not judging anyone who is using meds for their kids because I have been very tempted to use them too. I'm just postponing their use for as long as possible while his brain is still developing. If it's right or wrong, please don't bash me for it....every parent should do what they feel is best for their child.

We have told my son he has ADHD but are planning to tell him this summer that he has AS. I have wanted to tell him for a long time but my husband felt it would be better to wait. I have also sought advice on how to tell him. I got some good advice from another person with AS. He told me to tell my son pretty casually and to do it on a day when we're having something fun and special to do. Maybe on a day when we go swimming or when he gets a new video game or when we go to an amusement park, etc. I plan on mentioning that we have come to realize that he has some challenges and that there have been a lot of people who have faced these types of challenges (I'll mention Albert Einstein and other famous Aspies) and I'll tell him that those people have had incredible strengths too...just like he has...and I'll let him know that he is awesome the way he is and that even though he has these challenges, he also has incredible gifts and none of that has changed. Then we will distract him by doing something fun and he can ask us more about it after he has had some time to process it.

Sorry this got so long! Best of luck to you.

I remember being told that the biggest indicator of success seemed to be how much the parent learned about the condition. So step one is parental homework: you read. I went on-line and found places like this; others start in a library. Whatever reasonates with you.

As for telling, my son was 7 when testing was done and we told him right off, explaining the process as we went into and results when done. We basically had what I would summarize as the "your brain works differently" talk. Something, to be honest, he was already observing.

Thank you for all the advice!

Thankfully my son is very social at this time. I just fear for the day when he comes home and says he has no friends or that no one wants to play with him. We do play dates all the time, and will make sure to continue with them over the summer months.

As far as learnign abotu Asperger's, I guess that is what the confussing part is since no two children are the same. I guess I just have to find that one book that seems to be more like my son then others.
I am learning something new every day just by coming here. I had no idea that some personality types thrive on over stimulation, and my son is forsure that type.

Docotors love throwing in that ADHD label, me personaly I feel it is a symptom of something and not an actual condition on its own. Well, ok, maybe some kids can have ADHD and not ASD, but I also feel that mostly all children with ADHD also have anxiety and which comes first no one can figure out.
We too have chosen not to medicate untill he is older and is able to express how he feels, which at this point he doesn't even tell us if he is tired. He only started telling us he was hungry when he was about 5 years old, before that he would just act out and get in trouble.

Thank you for the school info, I am in Canada so I am not sure how much that chances things, but we are hoping there is some funding to get him a p/t EA to help with his reading.

Had anyone noticed with their 1st grader that they could read difficult words like "cought" but not easy words like "not".
As his parent and teacher I find this very frustrating, he seems to read the hard words with no help but is struggeling with easy words. Is this normal for Asperger's?
he is also so very smart with math, which we are proud of, but ask him to count from 4-11 at school and he sits there saying he doesn't know how. again, very frustrating.

I am glad my son isn't the only one. It makes it hard whent he teachers are constantly pressuring us to make him read at home. I can't make him do anything. We have even set up a reward system and many days he just doesn't care.

What province are you living in? In Alberta there is funding through the school once your IPP is in place, we're getting speech, o/t and an aide through the school.

We also get funding for additional speech, o/t, ABA, behavior therapy etc, through the government, it's through the Ministry of Families and Services for Children with Disabilities (FSCD) your province should have something equivelent.

"Has anyone gone for second opinions?"

yes. with our youngest, we originally requested an eval thru school, then sought an outside medical diagnosis when the school failed to do anything. he received a dx of aspergers from a psychologist. after that the school refused to give him an educational diagnosis for any form of autism. we knew they were both wrong, so when school started again in the fall we asked for a redetermination at school and found an outside neuropsych to do a more thorough medical eval. the school finally gave him an asd diagnosis, mainly due to having a new school psych this year who was a decent one, and the neuropsych gave him a classic autism diagnosis.

"I guess I just need some clerification that my son can have Asperger's even with having a strong desire for being social with others. And I will admit some of his social behaviour is not appropriate, but he doesn't get this, but the strong desire of being with others is there."

there is often this myth that autistics dont want to be social, and its not always true. my house has both auties and an aspie, and the aspie very much wants to be social, but just isnt successful with it, due to either being awkward or inappropriate, and that causes him a lot of distress. my little autie is actually incredibly social, but only with family. he loves to play with his brothers and us, is very affectionate, but not with outside people.


"Has anyone else felt the way I do?"

definitely, but not with our youngest (he and my SO are very obvious know that we know what to look for). our oldest has always been a "difficult" child, but autism never crossed our minds. he has a lot of similar traits tho with his youngest brother, and while waiting for our youngest to be diagnosed we started suspecting it may be an issue with our oldest. we asked for our oldest to be evaluated at school, mainly for add, and they came back with an educational asd diagnosis. that means for IEP and school purposes, he has autism. to confuse things, my SO, the father of my 5 yo autie, has also been diagnosed with classic autism, but he is not the father of the oldest so i cant simply assume its genetics. we are still undecided on whether to have our oldest assessed through the medical community. i still go back and forth on whether hes really autistic, mainly because the behaviors present quite a bit differently, and they are so subtle in my oldest. then i get a day like today, when i get a call from his teacher who is leading a 5 day trip to DC for 8th graders, a trip my son wasnt excited about because he has no friends that are going (or at all, to be honest), to tell me that N went off by himself and refused to stay with the group he was assigned to. N wanted to stay with the adults and not go with the kids, and was embarrassed that he didnt have friends to go with and had to be assigned to a group, so got upset and shut down and went off to be by himself. all of course, because of social deficits and failure to form peer group relationships. yes, autism today. tomorrow i will be doubting it again.

i am confused, too =)