Autism/Aspergers???

[iwrbnd]

I'd be too afraid that it would take away dd's personality-the dd I know. What would we do with our kids if they didn't have their special areas of interest or were suddenly social butterflies? It would be too weird...

Too hard for me to even contemplate.

Would I take away the anxiety and sensitivities if I could guarantee that's ALL that would be taken away? Heck yes, I'd do that. But I still think it's a "package" deal.

I would love mine to be "social butterflies" because that would mean they are forming connections to other people which is what life is about! I would take that weirdness anyday! Mine do have friends but I'm not sure they'll make the effort when they are older. I don't want them alone when I'm gone.

What are your daughter's special interests? She's a cutie, by the way!

 

[jodifla]

I completely understand your point, I really do, but if I could take away the ASD struggles from my child I would do it in a heartbeat! My asd boys are very smart w/math and technology and I don't want to take that away, however their cousins are even brighter and they aren't on the spectrum. There are still a lot of brilliant people out there that don't have autism. Like I said, though, I really do see your point and know what a contribution those on the spectrum make to society. My heart still breaks for my boys with their struggles, though! Life is hard for them!



You're right, lots of it is still mapping at this point. However, it still can possibly help with your child right now. My sister's 12 yr. old son has been diagnosed with autism since he was 3 yrs old. He just had this test done last month and they found out he actually has Phenan-Mcdermid Syndrome (spelling?) She also found out they are almost in the drug testing phase for this syndrome! She would never have known this without the test. It gets her on a more precise road for her son rather than a big umbrella diagnosis of autism. It has also helped with insurance because he's now considered "medical" instead of "behavioral/mental" which reimburses way better!

Whether someone decides to do this test or even treat autism someday is a personal decision. For me, I would do anything to make life easier for my boys and take away their struggles. On the same note, I love them no matter what and appreciate the special talents that asd brings, too!

This is a great point. And it's been my argument all along that it's a big mistake to consider autism this big spectrum. It's sloppy, sloppy science, and a lot of kids aren't being helped properly because the are misdiagnosed with the overly broad autism umbrella.

It will be great if they can start pinning things down more.

 

[GraceLuvsWDW]

I do think it's wonderful that you're at a place in your life where you can say that, though. I'm just not there yet. But, like I said, I see your point and it's a valid one!

Well, this happened to be a good day! So it's much easier for me to say this than a few weeks ago when we had a bad period. My dd just scored top of her class for the math benchmark so she too is a math "wiz". I think I get all of my "Autism" perspective from seeing my brother. He's definitely an (undiagnosed) Aspie. He had a tough time growing up, still is not social, but has done phenomenally well for himself. He's an industrial designer, makes gobs of $$$, and understands this world better than I would even get a fraction of on my best day. He's unbelievably gifted/talented and brilliant! I tend to see the Aspies, if understood, protected, and fostered well as brilliant gems that our society needs. Sometimes I even think it is an evolutionary step forward, especially when it comes to brain power and thinking outside of the NT box.

My dd, at 7, has remarkable gifts too, just like my brother. And I feel very lucky to have her precious existence in my life!

 

[GraceLuvsWDW]

Oh, and one more thing....my brother was diagnosed as MR at age 7. This was back in the 70's when very little understanding of Autism existed. He didn't speak til age 3, didn't read until 4th grade, and was in Special Ed back when that was reserved for the most inflicted of students. When the school IQ tested him they told my mother he would never be independent, held him back grades, and now his IQ as tested qualifies him for Mensa. Of course he would never belong to such a social group as that!

The moral of this story is to focus on the motivators of your child (my brother's motivation was drawing). My dd is also motivated by drawing geometric designs (which the school tries to "encourage" her out of ) and statistics. All patterns are obsessive to my dd.

 

[kirstenb1]

I'd be too afraid that it would take away dd's personality-the dd I know. What would we do with our kids if they didn't have their special areas of interest or were suddenly social butterflies? It would be too weird...

Too hard for me to even contemplate.

Would I take away the anxiety and sensitivities if I could guarantee that's ALL that would be taken away? Heck yes, I'd do that. But I still think it's a "package" deal.

Grace, I know I'm looking at this through a different filter. My daughters are 7 years apart. Zoe looks exactly like her big sister did at this age. Except there's a lack of animation, spontaneity, focus, whatever. She's not a happy kid. We have so few pictures of her. And that's when you can even get her to hold still for a photo. Her big sister is such a ham. She still loves posing for a picture, and gives so much joy and animation in her expressions, which is really an outward expression of her life. Sure she has bad days, but she has lots of friends, etc to help her balance those days.

So, even something so simple as a photo shows the huge chasm between where Zoe is, and where she could be. It would probably be easier, if the kids didn't look so much alike.

 

[iwrbnd]

Oh, and one more thing....my brother was diagnosed as MR at age 7. This was back in the 70's when very little understanding of Autism existed. He didn't speak til age 3, didn't read until 4th grade, and was in Special Ed back when that was reserved for the most inflicted of students. When the school IQ tested him they told my mother he would never be independent, held him back grades, and now his IQ as tested qualifies him for Mensa. Of course he would never belong to such a social group as that!

The moral of this story is to focus on the motivators of your child (my brother's motivation was drawing). My dd is also motivated by drawing geometric designs (which the school tries to "encourage" her out of ) and statistics. All patterns are obsessive to my dd.

Awesome story about your brother and it sounds like your daughter is on the same path!

 

[iwrbnd]

Grace, I know I'm looking at this through a different filter. My daughters are 7 years apart. Zoe looks exactly like her big sister did at this age. Except there's a lack of animation, spontaneity, focus, whatever. She's not a happy kid. We have so few pictures of her. And that's when you can even get her to hold still for a photo. Her big sister is such a ham. She still loves posing for a picture, and gives so much joy and animation in her expressions, which is really an outward expression of her life. Sure she has bad days, but she has lots of friends, etc to help her balance those days.

So, even something so simple as a photo shows the huge chasm between where Zoe is, and where she could be. It would probably be easier, if the kids didn't look so much alike.

I completely understand this and that's why I'm in the "I want a cure" camp. My NT son just exudes happiness and joy. Not all the time, obviously, but he loves life and is having a ball. My other two have more of a "flat" expression and things irritate them more.

 

[goofy's friends]

Well, we are back and have a diagnosis of PDD-NOS. Not sure how I feel about it all yet, trying to let it soak in. Thanks for all the help. Testing went well and it was a very long day.

 

[GraceLuvsWDW]

Well, we are back and have a diagnosis of PDD-NOS. Not sure how I feel about it all yet, trying to let it soak in. Thanks for all the help. Testing went well and it was a very long day.

I'm glad you're through it and have an answer. The diagnosis is so hard to get through. Allow yourself time to grieve and know that now that you have the knowledge to understand the struggles, things will be better.

 

[goofy's friends]

Thanks Grace......

 

[disneydreamer74]

Well, we are back and have a diagnosis of PDD-NOS. Not sure how I feel about it all yet, trying to let it soak in. Thanks for all the help. Testing went well and it was a very long day.

Well, I am happy that at least you have an answer. I will be taking my DD3 to the Autism research center at UNM in 5 days after a 7 month wait on the list. I have been fighting with the insurance companies to get them to fund her OT and speech therapy services and basically they want a definitive diagnosis other that Developmental delays. I have taken her to 2 different child psychologists in this city (las Cruces) and both were perplexed. The second one observed my child on a good day when she actually gave eye contact. After about half hour,she declares that she has some issues but does not have autism because she speaks!! This from the lead child psychologist for the public school system here..yikes!! Needless to say, I let her have it. I informed her that I never suspected that she had sever autism, the referral to see her was for Asperger's or HFA. She called me later that night and admitted to me that she had no training at all on the high end of the spectrum and referred me to UNM. It has been a long journey, one that started last Aug. when her preschool teachers told me she need to be tested. I am hoping for any answers as to what is going on with my dear little princess. No matter what the label, I will always glorify her unique abilities. I am saddened by the fact that I must travel 3.5 hours to get an educated eval for my daughter. There really needs to be more resources available to families in the southwest, and likely all over the country. Wish us luck that this will be the last testing we will be going through!!

 

[scojos]

just read through this thread as the mom of an HFASD kid
labels are good, for me it meant access to info via the interenent and knowledge as power.
here in the uk, we still have to fight for everything, one of the tag lines of a regular disser is never underestimate the strength of the mother of a disabled child i think about this everytime i openmy mouth.
hope your child gets the help they deserve

 

[bookwormde]

If you have found a group of clinicans that are highly qualified with HFA/Aspergers in girls you will in the end think the 3.5 hour drive was nothing

bookwormde

 

[disneydreamer74]

If you have found a group of clinicans that are highly qualified with HFA/Aspergers in girls you will in the end think the 3.5 hour drive was nothing

bookwormde

From what I am told, they are very respected in the field so...I am relying on this team of experts! I agree, the 3.5 hours will amount to minutes if I can finally get some answers. Her issues are : rigid routines, severe food aversions, sensory processing disorder (which may be a symptom or the actual diagnosis), issues with spatiality and the location of her body, and the most limiting issue being her meltdowns (affective storms) when there is a surprise or unexpected occurence. Ugh!! Just found out at the OT office today that the insurance has told them they will end payments after 2 more sessions, so I am hoping to submit whatever diagnosis she receives to them for reconsideration. We will see what happens!