new with questions

iVillage Member
Registered: 02-19-2004
new with questions
2
Thu, 10-20-2005 - 2:23am

Hi,

I just went to the neurologist 2 days ago. He walked in, saw my DD for 1 1/2 minutes and said "she has asbergers". We have seen him 3 times before and he has never said that. She is almost 5 years old. 6 months ago he said she had "semantic pragmatic learning disorder". Now she is labeled with Aspergers. We are devastated, but after reading up on it and also talking with her ST. My husband and I and the ST are not convinced that is what she has. She is very social, but her speech is very delayed, and always has been. She has been having more fears lately and having issues with loud noises in the last 4 months. I would love to hear about anyone who has a daughter or son that is around 4 or 5 with Aspergers and tell me thier child's story. What symptoms do they exhibit...how did you get the dianosis etc. Are we just in denial about her diagnosis...we don't know. She has mild hypotonia and her speech is moderate to severly delayed. She has been in ST since she was 21 months old and has had some OT and PT along the way. Out of the many therapist that we have seen in the las 3 years, all have said they don't think she has autism. So...very confused here. Any insight would be great. Thank you so much for listening. Also, if anyone lives in the Sacramento, CA area and can recommend a doctor or anyone they go to that would be great.

Thank you
Rachelle

iVillage Member
Registered: 06-25-2003
Thu, 10-20-2005 - 9:55am

Rachelle,

Hello and welcome to the board.

We have a saying here: if you've met one kis with Asperger's, you've met one kids with Asperger's (can substiture Autism for Asperger's.) In fact it is true to say "If you've met one kid, you've met one kid". Our kids are all totally different, and to describe two or three kids to you probably wouldn't help you out too much.

But I'm going to anyway:

My son is 7. He is VERY social -extremely outgoing. It is a myth that kids on the Autistic Spectrum have no interest in other children/people. Many (most) do. The 'social issues' can become apparent because they go about it all the wrong way; cannot read another person's social cues, cannot see their point of view, maybe want to control all of the action, talk "at" rather than "to" a person, speak all the time rather than take turns as listener, want to play more "primitive" games, such as chase... etc etc.

Peter didn't develop functional language until he was 4.5, yet his official diagnosis is Aspergers Syndrome. I usually refer to him as HFA -High Functioning Autistic, because he had (has) a severe language delay, AS is not correct, however HFA is not an official diagnosis on the DSM IV and "Autism" is generally seen as describing a lower-functioning child, so they felt AS was the best they could do to describe *him*. It is not an exact science.

I agree that he is on the Austisic Spectrum, so I don't get hung up on the particular DX. I just treat him as "spectrum" and get on with life. Even though he is social, funny and outgoing, he patently has an "autie" outlook on life and struggles on a daily basis to understand "our" world. He was pretty hypotonic. This has improved largely because two of his main sensory issues (vestibular and proprioceptive hyposensitivity) cause him to be extremely active. He still has tone issues and gets OT and PT in achool. As a small child, he had severe behaviour issues (sometimes still has).

My DD is 5 and has an official "DX" of "at risk for Asperger's Syndome". I.e. she does not meet all the criteria, but there is *something* there. She is less outgoing than DS, although she will play with a child she knows/likes. However, she does have a tendency to go for very stylized and repetitive play. She has moderate-severe sensory issues, which have improved with time and therapy, but she will blow up at anyone who brushes against her (does not help the social issues, but does not cause them). She has no tone issues -could tie her shoelaces at 3yo.

I struggle to understand her sometimes. Sometimes she seems so much more related than DS -she says "I love you" and is more huggy and affectionate than my son, but then she will do/say something so very "spectrum" that I really wonder. Right now, I am sticking with the official word, and getting her all the help I can get for her through the school district. This has worked well for us -we got tons of help for her and have seen VAST improvements in her language and confidence in the past year and continuing into Kindergarten. People who barely know us have commented on it. It is wonderful to see.

Maybe DD's DX will change. Maybe she wil be seen as one of those who "moved off the spectrum" or who never were on it. Alls I know is that getting these extra services on the strength of her "DX" has helped her far better than denial would ever have, so I am sticking with it until it stops benefitting. Then I will change the plan.

That's one mom's (partial) story. I hope it helps somewhat.

-Paula

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 12-22-2003
Thu, 10-20-2005 - 1:59pm

Hi Rachelle~

I hestitate to post our story, as mine mirror's Paula's in a lot of ways. But then, I've been saying for a while that she's my on-line sister-she just happens to be Irish and I'm verrrry German! ;-)

My 8 y/o son is Dx'd as Aspergers. We started the process when he was 4, and have been through all of the ups and down of life "on the spectrum". He has always been incredibly social, but has never understood proper social cues. He doesn't understand how his action can affect other people, nor does he realize that other children think he's "odd"- just last night I asked him who his friends were at school, and he promptly named three little girls, none of which are in his class. To him, that's normal. To the outside world, it's a red flag.

Noah had a Dx of expressive language delay early on in the process, but now the time he spends in speech therapy relates to social stories and back and forth conversations. He has some sensory issues, and was considered low tone from 9 months on. But never enough so that he received PT or OT.

Claire is our 5 y/o and her Dx is traditional autism. Children simply don't get more social than Claire! She loves people- in fact, so much so, she doesn't understand the concept of stranger. The devil himself could offer to read her a Dr. Seuss book and she'd gladly climb onto his lap.

Claire's language delay is severe, but blossoming. Her sensory issues are also severe, and progress has been slower going in that arena. Her tone is "so low" that when they test her reflexes, she has none. She gets OT, PT and ST at school, has a one on one aid, and has managed to charm the wits out of every staff member and most of the other students in her school.

Amy W.

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