After many evaluations, my niece was finally diagnosed with Autism

[lizziegrace]

She'd been labeled stubborn, ADD, ADHD, possibly bi-polar and socially deficient. (I don't know if this has anything to do with it, but we found out after the fact that her father was doing drugs and drinking when she was conceived.)

Finally, after several years, she's been properly tested and is autistic. Testing indicates she has a high IQ but lacks many social skills.

As someone who loves her dearly, I'd like to find out as much as I can about the best way to relate and communicate with her and how I can help. She lives in the UK but we talk weekly on the phone.

My sister and her second husband are wonderful parents. I know they'll do everything they can.

Thanks in advance. :hug:

[ThatsMyBarack]

1. How old is she?

I wasn't dxd with Asperger's 'til I was 17.

[lizziegrace]

2. I think she just turned 8

:)

Incredible imagination, very bright, math wizard but cannot tolerate noise and crowds and confusion around her.

[RainDog]

13. noise and crowds

my son is also extremely sensitive to loud noises. this is a real phenomena. Apparently their brains are not filtering out some of the buzz that we sort of become unaware of. He also has a hard time with bare lightbulbs, and automatic lights... as in a garage light that turns off on its own.

when my son was younger, I was accused of spoiling him and being a bad parent because I didn't insist that he not get upset about this or that. I was blamed for so many things that, after my son's dx, I wanted to go back to all those people and say.. hey, want to apologize now? -- because you made my life hell. My sister, on the other hand, kept telling me that my patience was amazing... before she knew my son was autistic.

my step-mother and the wife of one of my ex-husband's colleagues were the worst about this, and they're both dead now. They were all about blame, tho.

I wouldn't assume drinking was a factor. I don't know of any research that supports that idea. I wondered about that for a while too, because my ex drank a lot and because my son has epicanthic folds and a wide smile that is similar to fetal alcohol syndrome expressions. However, the docs basically ruled this out.

From what I understand, it is a genetic abnormality that, like sickle-cell anemia in a way, is expressed when certain possible factors combine. Genetic shuffling. Like sickle-cell anemia latent xy, vs. sickle cell yy, (get out your old punnet chart!) , latent confers benfits upon people in malaria-prone nations, while no "y" makes people vulnerable to malaria. some speculate that aspergers' individuals could have served as the "memory" for a group of people. Severe autism is one of a few possible expressions of such a genetic possibility, as is sickle-cell anemia when the genetic shuffle for these possible traits combines in one way vs. another.

Sometimes on this board I get livid about remarks that are about blame or some hazy sort of "you make your own reality" stuff. My experience with my son is why. In great part.

The other part is that this same step-mother, who came with my dad to stay with me and my 9 month-old autistic son after my then-husband had to be committed to a mental unit and put on a suicide watch (he's bipolar, just as his dad was, and his granddad...) anyway, this same step-mother asked my father, thinking I couldn't hear her, what I did to make my ex have a major bipolar episode.

Those experiences began my gradual withdrawal from lots of people. especially women who were "expert mothers." Who needs their crap on top of everything else? I was not responsible for my ex's mental problems or my son's autism. I basically had no support from anyone while dealing with both of these issues. No big surprise that I'm now divorced.

[Midlodemocrat]

3. Check out this website

www.autismspeaks.com.

I really like it. :hug:

[lizziegrace]

4. Thank you...

:hug:

She's an amazing child (as all children are). I'll check out this website this evening.

[lizziegrace]

5. Kick

:kick:

Just this once...

[SPKrazy]

6. Wow Lizzie

There is a lot more inertia for the idea of mercury in vaccinations (thimerisol sp ) being a culprit, but whatever caused it drugs, etc, she's got it.

I would suggest the national institutes of health http://www.nichd.nih.gov/health/topics/asd.cfm as a solid starting out point.

There are support groups and lots of info online, but inform yourself with the basics because there are a lot of "theories" out there.

:hug:

sorry about this, but hopefully a proper diagnosis well help get her better treatment :)

[lizziegrace]

7. I don't know if it was the drugs or drinking her father was doing or not

I just know her older brother is fine. She did have all her vaccinations as her brother did. It's just that it's not as widespread (it's my understanding) in girls than in boys.

You would never know unless you spent time with her that there were problems. She can be hyper. She has a vivid imagination. Imaginary friends. She's a kick. Funny and sweet and I absolutely adore her. And her heart. She has a huge heart and loves deeply. She sobbed and sobbed the last time I saw her and had to leave. :-(

She's getting terrific assistance in England.

:hug:

[SPKrazy]

8. I'm glad that she is getting good help

I know you miss your sister and your niece

:hug: :hug: to you Lizziegrace

[KamaAina]

9. Quite a few DUers are on the spectrum, too

enough of us (and family members like you) that we have our own DU Group.

http://www.democraticunderground.com/discuss/duboard.php?az=show_topics&forum=387

See you 'round! :hi:

Aloha,
K-A
person with autism and cum laude Yale graduate

[lizziegrace]

10. I saw that group in the list

didn't know (and still don't) what PDD stands for...

:hi:


I'll check it out.

[KamaAina]

11. PDD = Pervasive Developmental Disorder

it basically means the spectrum of conditions including autism, Asperger's, and Rett's (an uncommon one affecting only girls). In ordinary usage "PDD" usually means PDD-NOS, "Pervasive Developmental Disorder, Not Otherwise Specified." This is a catch-all category that clinicians use when they can't quite get enough boxes checked on the form to qualify someone for autism or Asperger's.

[RainDog]

12. aspergers, in other words

my son was dx'd with aspergers when he was in 3rd grade. it hasn't always been easy, but he's doing well. He's in his sophomore year of college and he even had a girlfriend for a while that he knew in high school.

He's very naive in many ways, very much attuned to the life of his own mind, rather than everything going on around him. We cannot assume that he simply "gets" any of the niceties of social interactions... even using soap when taking a shower, for instance. He could read when he was three, but couldn't tie his shoes until he was twelve. As he's gotten older, his memory skills are less useful than analysis, and that's not a strength for him.

Look up Tony Atwood online. He has lots of resources and he's also one of the top Asperger-concerned practioners. And he lives in London. There are social skills exercises people can do in order to better read non-verbal cues, but my son hasn't changed his behaviors that much.

His obsession is baseball. Generally all aspies have a particular obsession... what it is really varies.

You might also be interested in reading Temple Grandin's books, Emergence, Labeled Autistic and Thinking in Pictures. she is autistic and a prof who designs cattle chutes. her expression of autism is the exact opposite of my son's. he is "spatially challenged" and has a terrible time with math. On the other hand, he likes to act because he sort of does that anyway in real life when trying to interact in "neurotypical" crowds. (Neurotypicals is the designation for non-asperger's people, while "aspie" is a sort of social acceptance group.

Your niece can also find online groups for and by aspies. My son finds it much easier to interact online because of the social skills aspects of the condition.

There are many people in history that aspies claim were undx'd aspies, like Albert Einstein... and some people claim that half the professors in the world are aspies! -it's also called "the little professor" syndrome.

[KamaAina]

14. Temple Grandin isn't the only author with autism

Donna Williams ("Nobody Nowhere" and the inevitable sequel, "Somebody Somewhere") is another. Sean Barron co-wrote "There's a Boy In Here" with his mom Judy, and so on. We have developed enough of a literature that there is an Autism shelf at my local B&N!

Dr. Attwood's name is spelled with two t's. I normally stay away from spelling Nazism, but it helps if one is looking someone up with teh Google.

[RainDog]

15. no problem!

I'm glad to see people on this board with aspergers because it reinforces the knowledge that, although someone may have this or that trait, like, say, femaleness... not all are the same ever.

I've not been involved with aspie stuff for a while. My son, as noted, is "aspie-power" proud. He's now able to ride a bus to get around (we don't live in a huge city) or walk, except when it's really late. then he always has to have money for a cab... and last resort is to call me. (He can't drive because it's too much sensory imput.)

Augusten Burroughs' brother also wrote a book based upon his experience as an aspie. Called Look Me In The Eye.

My son also likes to write. He was also all-state vocal jazz... and he tells me all the time when my singing is flat. I still try to get him to sing with me, tho, even if I'm not perfect. I like to sing harmony. :)

[no name no slogan]

16. I bet there's a sense of relief

Hopefully that doesn't sound cruel (it's not meant to be), but at least now they can put a name on it. I know when I was finally diagnosed with bipolar disorder (after being misdiagnosed for 20+ years), there was a sense that FINALLY we know what we're dealing with and can treat it effectively.

:hug:

[lizziegrace]

17. You're right

you can deal with almost anything, as long as you know what it is...

:hug:


She'll do fine. She's definitely one of a kind and very high-functioning. I think that's one of the reasons it was so difficult to diagnose her.

[lightningandsnow]

18. *Hugs*

I know it can be hard (My parents would take it really hard if I was officially diagnosed, so I'm avoiding shrinks like the plague until I'm 18), but the best thing you can do for her is accept her as she is and celebrate her strengths and good qualities. Which I know you already do.

Best of luck to you!

Oh yeah, and I've gotten "stubborn" and "Socially defiecient" a lot too. Although the stubbornness can occasionally work in one's favor.