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Affection?


Forum: Children with Developmental Delays and Disorders

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  #1  
April 30th, 2008, 12:31 PM
fiefer87's Avatar Mega Super Mommy
Join Date: Aug 2007
Location: Near Buffalo, NY
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I occasionally post on this board, but haven't in awhile. For those of you who don't remember, my dd was born with septo-optic dysplasia, a condition that includes visual impairment, endocrine disorders, and brain structure/function abnormalities. She has the VI, a few endocrine problems, and she has an absent septum pellicidum (webbing between the hemispheres of the brain) and thin corpus callosum (which leads to mental retardation - she scores at 46 on the IQ scale, but i don't agree with that), and many kids with SOD are diagnosed with some degree of autism.

Okay, now that I have covered the background, Alexis was diagnosed with autism in September. She has always had some autistic tendencies, stimming, rountine oriented, resistance to change, echolalia (sp), delayed speech, but she has never had any problems with aggression or showing affection. She walks right up to strangers and will climb up in their laps or hold her arms up to be picked up, or if they are standing, just hang all over their legs. She pulls me to the couch so she can sit on my lap, or she will snuggle right in when she gets tired.

I guess I am just wondering if her autistic tendencies are just that, tendencies, or if there is truly some degree of autism going on. Some of the research I have read that is specific to autism and her condition, are split on whether its true autism or if its a different pathway that ends up at the same spot.

I mean, we are fine with the autistic diagnosis (or as fine as we can be), but it just gets frustrating that all the docs we have seen just call it autism without really exploring whether or not its just tendencies or what. If that makes any sense.
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  #2  
April 30th, 2008, 06:42 PM
MrsStuartD's Avatar Platinum Supermommy
Join Date: Aug 2007
Location: Ontario, Canada
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My son is very affectionate and he was diagnosed with autism in feb of this year. He's classified as moderate to high on the spectrum. Autistic children are all different. There are no two alike. So to say that all autistic children have difficulties with affection is stereotypical if you ask me. I think your doctors made the right diagnoses. My son has all of the same tendencies. I just think the higher you are on the spectrum the worse your social skills get and the less you can show your emotions.
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  #3  
May 1st, 2008, 05:36 AM
Tammyjh's Avatar Platinum Supermommy
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Hi Jennifer,
I know what you mean. I have the same types of questions. While I do believe that Asperger's is in our family, I don't think Abby would have gotten the dx without the brain surgery. As she's missing most of her right hemisphere (and whats left is not functioning normally or communicating with the left hemisphere), she has a lot of quirks and symptoms of other disorders but the closest fit is ADD, Nonverbal Learning Disorder and Asperger's Syndrome. Her moods are usually quite unstable but not enough for a specific dx other than "mood disorder NOS". We're fine with the dx's as well but like you, are uncomfortable when dr.s' want to say "its the Asperger's" ...basically dismissing the PRIMARY dx of "brain injury".....which I feel is not something that should be overlooked at all. So, on paper, its officially "Aspergers, SECONDARY to functional right hemispherectomy..blah blah blah" We've learned over the years that the brain injury piece is the most important and that Asperger's/nld/add is discussed second.

As far as the affection. Abby has never been one that liked a lot of cuddling so she wasn't one to snuggle on my lap very often. She would let me pull her on my lap and hold her hand if we were out shopping but for the most part, she liked her own space when she was little. She did give hugs but it was a strange way of doing it. She would come at us with her arms outstretched and give us a big squeeze and it didn't matter if we wanted one or not...she was giving it...we called it "aggressive hugging" . But your post about your dd reminded me of one time when Abby was little(about 6) and we were visiting friends at a party. Dh introduced her to his friend and she climbed up on his lap and gave him a kiss instead of shaking his outstretched hand. Social rules are so confusing for people with brain injuries/abnormalities and for those on the spectrum. I think the important thing isn't always the primary dx but the therapies used to help and if the therapies used for kids with Asperger's can help my dd with her brain injury...then the dx for those symptoms don't really matter. But I definitely understand where you are coming from. I'm there too a lot of days.
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  #4  
May 1st, 2008, 06:21 AM
fiefer87's Avatar Mega Super Mommy
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Thanks ladies. I really appreciate the info, stories, and support. I find it so frustrating because some people in passing have made comments about oh she can't have autism because she's so affectionate. And that really bothers me. Yes, she has been diagnosed with autism (though how high functioning we don't know yet, since it has been compounded with all her delays from the VI) and we are comfortable with that. It just bothers me that some people feel they have the right to make those kinds of statements. GGRRRR. Some people just have no tact or no clue I guess. Again, thanks for the support, sometimes I just want to live in fairy tale land where yes because she is so affectionate, she can't have autism. But fortunately those moments are few and far between for me, and I don't stay there long.
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  #5  
May 1st, 2008, 03:01 PM
Tammyjh's Avatar Platinum Supermommy
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Well, part of the affection piece is how sensory each kid is and what type of sensory are they either looking for or trying to avoid. They may want to be affectionate but not like hugs because of the way it feels. Other kids love the sensory stimulation of being squeezed so they're always ready for the cuddling.
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  #6  
May 2nd, 2008, 10:36 PM
picklesmama's Avatar <;,><
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Quote:
I find it so frustrating because some people in passing have made comments about oh she can't have autism because she's so affectionate. And that really bothers me.[/b]
That bothers me too. Many people still have a stereotype of a person with autism in their mind.

Quote:
Well, part of the affection piece is how sensory each kid is and what type of sensory are they either looking for or trying to avoid. They may want to be affectionate but not like hugs because of the way it feels. Other kids love the sensory stimulation of being squeezed so they're always ready for the cuddling.[/b]
Yes, that is Gus. He loves a squeeze. But, it has to be his decision. You have to ask for a hug, he likes to have warning.
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