Hi!

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I originally posted this in the sticky thread for "what it's like to be a parent of an Aspie" (or whatever it's titled at the top of the board here)...but someone suggested I post it as a new topic, so here I am.

If you've already read it - I apologize!

Hi...I'm Rhonda, and my son Gavin is 7. Gavin hasn't been formally diagnosed yet, but I feel CERTAIN that he is definitely an Aspie. When he was first born, he was about as happy-go-lucky as a kid could be. Something changed when he was about 2 and a half though. I went to pick him up from his crib one morning, and he screamed "NO!! !" at me and pointed for me to leave his room. Not long after that, it was Christmas and Santa came with the brand new ride-on truck that Gavin had been asking for. That morning, Gavin refused to come downstairs to see it. When we finally convinced him to come down that day - he wouldn't look at any of us, and ever since - he won't give his grandparents hugs or say hi or anything unless we prompt him...and even then, you can tell how uncomfortable he is by it.

I have an entire two page list of observed behaviors on him that I plan to take with us to the appointment we have with a Child Neurologist in June. It has been a difficult road thus far, but not necessarily because of Gavin as much as it's been because NO ONE seems to know what's going on with him. Originally he was diagnosed with ADD late last school year, but I just knew we were missing something. I just didn't know what. I've taken him to a psychiatrist on the advice of his pediatrician, but that guy didn't spend two seconds talking to Gavin or even observing him. He literally pulled out his RX pad and wrote a new prescription for Ritalin, saying that Gavin must have been on the wrong meds because he obviously doesn't have autism and he's "fine". Sure, he's fine for Gavin - but how do I help him be successful? How do I teach him how to pick up on social cues and be polite? How do I be a proper parent for him? These were all the things going through my head on that visit. So I get home, completely frustrated and concerned - and decide to start searching the 'net for an answer. I read, and read, and read - and in the meantime I have my best friend come out to visit. She's a special ed. teacher in Wisconsin (we live in So CA) and she evaluated Gavin like she would have any other kid that came to her school. I'll never forget the day she pulled me aside and suggested that I have Gavin evaluated for Aspergers - and to ignore that psych I went to for him. I had a NAME of something, finally!! Then the challenge of finding a doctor that would actually evaluate him began - and we're still in the cycle for that right now.

I'm learning that you can't give up. When a parent has that nagging feeling that there's something else going on - you HAVE to listen. I can't tell you how many times I would watch him at a park, at a soccer game, in school, and wonder why he wasn't acting like the other kids. I'd wonder where I went wrong as a parent, and I'd wonder what I had to do to help Gavin out. I felt like I was just throwing darts with a blindfold on to find what worked.

He has virtually every symptom there is for Aspergers - in varying degrees. He doesn't sleep at night (but for a few hours), he lives by a schedule, he insists on a routine (do NOT spring new things on him - he doesn't meltdown any more, but he certainly doesn't go with the flow either), he's OCD when it comes to keeping his fingernails and toenails short, he eats a very limited amount of foods - and seems to continue limiting them as time goes on, he doesn't hold eye contact with anyone - if he gives it at all - which is one reason why his teacher doesn't think he's paying attention, he seems to be very anxious at times (he runs whenever he's feeling "energy" building up in him - that's what he calls it), he's not very coordinated - he plays soccer, but has a hard time connecting his mind with his foot and the ball, he's not good with imaginative play, doesn't recognize facial expressions unless they are beyond obvious, LOVES video games, Pokemon, Naruto and Star Wars....and he's brilliant and talks like a little man. I'm not just saying that - he is. I could go on and on, but I'm sure you get the idea.

Last week, we went to lunch with a friend of mine whose son was just formally diagnosed with Aspergers. I hadn't seen her for a long time - and when we got together - it became apparently instantly that her son and mine were very much the same. Her son was Gavin as a 5 year old - and I just marveled at him. We spent the entire lunch looking at one another and nodding, and laughing - because it was a complete RELIEF to see that we weren't alone. I came home feeling so vindicated, because I KNEW. I finally knew.

The worst day wasn't when I knew Gavin had Aspergers (and in fact he hasn't gotten formally diagnosed - we're still working on that), that actually was the *best* day - because I finally had an answer as to what was going on. Now my job is help Gavin to be successful at whatever he wants his life to be about. I'm his mom, it's what I do. My life is difficult and busy and crazy at times - but I'm not at all sure it wouldn't be even if Gavin were a completely non-aspie kid.

I love Gavin the way he is - my life wouldn't be the same without him, and he certainly wouldn't be Gavin otherwise. That said though - I have to admit that I've mourned the Gavin I knew prior to that morning I went to get him out of his crib. I don't know what did it, or why he changed, although I know that not long before that morning, we'd gone to the doctor for his immunizations...and I do admit that I wonder about that...and feel guilty because what if something I'd done out of protecting my dear son had actually harmed him permanently. It's a lot for a mom to carry around, I must admit. I try not to think about that though - and just go forward from here. As I've said - I'm a mom, and it's what I do.

Hi Rhonda,

Remember AS is a difference, not a disease, and it does have a strong genetic component. In the past, many people with AS were considered to be eccentric and often brilliant.

You have to teach your son good manners and that will work for him until middle school when other kids start forming relationships based on personality more so than on finding someone to play with. I think at your son's young age, try and keep it rule based.

You really need to understand the CORE problem and that is with not being able to take someone else's perspective. This is a very hard thing to teach, but I would suggest trying Social Stories:

http://www.thegraycenter.org/

These are easy to learn to write yourself and the best way to teach social understanding to a young child.

And I would suggest yor reading:

http://www.amazon.com/Unwritten-Rules-S ... 93256506X/
to help you understand the specific differences in social interactions.

And every parent should read Tony Attwood's book:

http://www.amazon.com/Complete-Guide-As ... 843104954/

Focus on the strengths and give him plenty of love and acceptance. Children with AS can be even more rewarding than neurotypical children.

From how you described his development cycle you might also want to look into CDD (Childhood Disintegrative (sp) Disorder). While this is generally a lower functioning form of autism I have heard of it happening this way. Though like Serious said before me, don't look at it like a disease, I am sure your son is cool, just goofy .

PS if you ever have any questions feel free to PM me with them, UOPHA is always at your service.

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Thank you both for your replies.

Interestingly enough - I want to ask why the both of you pointed out that Aspergers isn't a disease. (please understand that I'm not finding fault, I'm just trying to understand where I might have come across incorrectly) It's just the same as ADD or ADHD - they aren't diseases, they are just differences in the way someone's brain works. As for the genetic factor, I honestly am not sure that would apply in this case (???). It's not that I don't think it's possible, it's more that I don't know where it would come from. I suppose though, that there are certain behaviors that my husband has that Gavin seems to carry - as well as certain other behaviors that *I* have that he seems to carry. The "trouble" is - I don't think either one of us is truly AS. *shrugs* Who knows though - I mean, both of us as well as our respective families were brought up during a time where the term Aspergers wasn't even discussed, much less understood (I'm 36 and my husband is 38 ).

CDD is an interesting take to have - he doesn't meet much of the criteria for that (I had previously looked into that), but as I've said over and over - I'm no doctor. I just know what I see on a daily basis, but I really don't know what it all could mean.

I will DEFINITELY check out the books and ideas you've suggested. It's a huge help and I really appreciate it!! I'm looking forward to learning more around here!

Rhonda, we stress not a disease because a lot of parents are looking for a cure and there isn't one. AS is a set of personality traits corresponding to a neurological difference. You don't necessarily have to have all the traits in one partner (where the partner has AS) to produce a child with AS. Usually one or both partner has some traits. It clusters in families with ADHD, OCD, elective mutism and other types of neuro differences.

Almost every researcher agrees that AS is in fact genetic. Do you or your husband have any odd or eccentric relatives? AS didn't even begin to get recognized until 1994 and still is mostly unrecognized in adults.

It is of course a spectrum and everyone has some AS traits. In AS, they are present in number and severity to make an impact on your life rather than just make you quirky-normal.

Wow - thanks for the information! I really don't know....I mean, there are odd relatives on both sides of our family! No really though - it's like I said, Walt has some traits, and I have others (for example - it is VERY difficult for me to maintain eye contact, and I've had to train myself to do so. I also don't particularly like talking on the phone - I'd rather deal with people in person where I can see them, or better yet - not deal with them at all. ) I suppose there are other things about me that are somewhat AS....and my sister actually has been diagnosed with ADHD. My husband has ADD as well.


As for a fix-all cure - I know there isn't one. This isn't something that can be cured, and in my opinion - it's more like a part of my son's personality in general. I wouldn't want to "fix" him even if I could!

i understand the guilt and the mourning....everyone has gone through it~even if only for a brief minute. We just have to learn to move on & embrace the uniqueness of our children and help them grow into the most capable adults they can be.....hang in there. hope you get a dx soon.

Don't worry about the vaccine or feel guilty. With CDD they start off 'normal' and start showing symptoms when they're a little older. THis just happens to coincide with the time of their vaccinations.

I have done heaps of research (I'm a health professional) and I don't believe there's any link between vaccinations and ASD's.

Sounds like you need to sack the doctor you saw.

We sacked the first paediatrician - she just wanted to stick my 7 year old on Zoloft!

It's good to read as much as possible - so you know whether you have a crap doctor/paediatrician / psychiatrist or not.

Sack them if they're no good. Ask around for a good one. The only problem with the good ones is it often takes months to get in to see them. Worth the wait though.

Great that you've worked out your son has Asperger's so early.

Smelena