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Thursday, August 21, 2008

Down syndrome and autism

OK, I have spent nearly two months telling myself Amanda has orphanage behaviors, she likes to be left alone because she was not socialized, she does repetitive things because she is learning, she won't smile at us when we smile at her because she is adjusting. She doesn't make eye contact because they don't do that in Estonia...I am fooling myself, something is terribly wrong with Amanda.

I am afraid Amanda has autism, my heart says she does, I have to admit it so we can get her help (we have already dealt with autism spectrum disorders, so we know the signs). I try so hard to get her to look at me, to smile when we play. Kara was not comfortable when I played with her at first either, but after 6 weeks she cuddled with me and loved to be held, would not let me put her down. Amanda actually pushes us away with feet and fists, she will also scratch and pinch to get us to put her down. Right now she is in the hall rocking, I tried to hold her and she pushed me away. She prefers to keep herself company. I enjoy feeding her just to get her to look at me, otherwise, she just shuts me out. She seems terrified of hugging, she is afraid of any physical contact to be truthful. She likes her legs rubbed, but not her arms, face, or back.

I finally go the nerve to look it up, I am afraid this describes her to a T. I just want to cry, but I am also afraid for her future. The doctors and therapists who have seen her have all asked about her smiling, interacting, playing with the other girls (she doesn't at all, Meghan tries to play with her) Meghan's speech therapist brought up autism with me today, she recognized the behaviors as well. She voiced what I have been afraid to.

From the webpage:
So the key areas to watch for in a child with Down syndrome suspected of having a complicating behavior disorder such as autism is in the social and emotional areas. Some professionals will argue that social and emotional development can be expected to be affected by delays in cognitive development and it is not evidence of a separate disorder. This is where the subjective nature of autism diagnosis comes in. It's a matter of degree.

Some key behaviors that may point to the possibility of autism in a child with Down syndrome are:
Extreme Autistic Aloneness - The child does not relate to people normally and seems to prefer to be left alone. The child seems to consider other persons as objects, not people. He will not join in group play with other children. Unlike children with Down syndrome, who are very lovable and huggable, the autistic child does not want to be held. (
True, yes, this is Amanda all over)

Anxiously obsessive desire for the preservation of sameness - Any differences in daily routines can cause a large upset. (This does not seem to be an issue, we do stick to a pretty regular schedule)
Lack of eye contact - Autistic persons typically do not make eye contact but will look away or "right through" other people. (When she eats she turns her face away, closes her eyes, and ignores us, I play with her and act goofy to get her to SEE me when she eats)

Shows repetitive, "Stereotypical" movement, like sitting for long periods of time with an object in his hand and just waving it back and forth looking at it. (Yes, 80% of the time she is awake)

I am constantly going after her to bring her back into the room with us. She crawls away and shuts herself up in a room.

I would love to hear from others who have children with a dual diagnosis.


The Red Thread Kids: said...

Oh, :(. I know its not much coming from a complete stranger, but let us know if there is anything we can do for you? Take care and kiss your girls.

-Debrah in Tucson, Arizona.

GoldenAngelsWorks said...

Oh Kris.... just another thing you and the family need. Poor Amanda... hoping she would be able to adjust and get comfortable with her new home.
Praying for all of you and know I am here for you.

Shelley said...

This is Ecki's blog: http://oppositekids.blogspot.com
Her youngest daughter has Ds and Autism. We researched this issue a lot this year...signs and symptoms and treatment options. There are no easy answers.

Amy said...

I'm praying for you and Amanda. Thankfully you are aware of the signs and have a lot of experience with autism. Amanda is blessed and will have the life she deserves with all of you as her family. She needed you. God Bless!

carol said...

I am so sorry . I dont know what to say. I hope you can find a Dr. in your area that can help you find theropy for her. If there is anything I can do please let me know.
carol n

WheresMyAngels said...

Kris, I know several people whom have children with DS and Autism, but none of them with girls. I'm pretty sure there is a YaHoo group for the dual dx, let me check for you.

Also, want to give you big cyber hugs and prayers. I know that it is a big scare to face a dual dx. I have always wanted girls because I was so afraid if I had a son with DS, they would also have Autism (much higher percent then girls). But after meeting my friends Son Russel so many time. That fear eased in me.

Courtney said...

Is there any chance it's RAD? I don't know how often that occurs with DS, but it's somewhat common (that's maybe not the best word) for children who have been institutionalized, especially since birth.

Cammie Heflin said...

Kris if you want to talk privately let me know. I am a fully trained Autism Consultant and would love to try to help.

Alice said...

Praying for you all!

Julie said...

Praying here, too! We have a son with autism and I know those sad days of realization, too. The good news is that you know what to do and can help Amanda. Hang in there....

datri said...

My daughter Kayla (age 4) has DS/Autism. Shelley already mentioned my blog above, so if there's anything I can do to help, please let me know. There is a DS/Autism Yahoo group, although many of the kids on there are much older.

My three little girls

My three little girls
Finally got all three to smile at once