Posted: September 22 2005 at 8:34pm | IP Logged

Lisa,

I am like you and have been reading this forum for some time before joining/posting.  I am not sure what Kylie's diagnosis is because it is all so confusing to me.  I want to just trust the doctors, but I have different opinions coming from different doctors.  The original diagnosis was severe ADHD and developmental speech problems. Kylie is nearly 2 years behind in speech development.   Hubby and I agree with that diagnosis.  However, Ritalin and Adderall have both been tried and there are still issues with temper.  She just began receiving ST.  We were referred to a child psychiatrist for medication management who feels that Kylie is really autistic in addition to ADHD.  We are not sure that she is autistic.  She was evaluated over several visits with child specialists including neurologists and developmental pediatricians.  We all agreed with the diagnosis, but now this doctor who has only seen her once for less than an hour wants to say she is autistic and place her on Resperdone.  Hubby and I are not comfortable with that diagnosis.  We are not sure that her socialization problems and anger are not stemming from the ADHD and speech issues.  For instance, ADHD children have "lock in" and "lock out" behavior.  How do we know that her blank stare is autistic or ADHD locking behavior?  We haven't given ST enough time to see if it would help since she just started a month ago--and loves it by the way! I just don't have any easy answers, and I was hoping that someone here could help me distinguish between them.  I am not opposed to medications or a diagnosis of autism if it is accurate.  It is just that I am not so sure that is accurate from all that I have read.  I just want to do what is right for Kylie, who is a beautiful  4 1/2 year old green-eyed doll.  I don't want to rush to a decision and my mind is going a mile a minute.  We need help now for her, but I just wonder if she was receiving the right medication for ADHD or the proper dose.  The last medication was 15 mg Ritalin.  It seemed to really help except some days in the evenings or after being out all day, she would have a meltdown.  Her regular pediatrician explained to me that ADHD kids often have a hard time with stimuli and get overloaded very easily.  So, although I do see some autistic tendencies, I am not sure where that line is between ADHD with speech problems and autistic, so I decided to ask the real experts!  Sorry for going on and on....but I would really appreciate your advice!

Posted: September 23 2005 at 8:17am | IP Logged

Leslie,

I am no expert but I know my child. I personally have known things were not right since Mason was two. I didn't put all the little bits together until recently and then I understood what we had been going through for at least 3 years. I could not accept any thought what so ever that my child could be autistic. I had never heard of Aspergers until a few months ago and when I read what a child with it was like I felt I was reading about Mason. To me it was finally confirmation of something even though we have no diagnosis as yet.

Mason has meltdowns but generally his are brought on by a change in routine that he can not accept or if he is in a large crowd of people. Mason is secure in his own environment but take his routine away and do we know about it. He has obsessions and has had since he was two. Not just interests but serious obsessions. He has some sort of auditory problem although I have been battleing to get this reconised for two years. He can not understand a sentence when you either talk to him outside where there is background noise or if you speak to him out the blue. I then have to repeat myself two sometimes three times. Mason has communication problems, he struggles to start a conversation with children his age and play. parties are a nightmare. He lays down the rules when he has a friend over and he never keeps friends for long as a result of his not letting anyone near his things. I know Mason has a problem and only you can really know your own child. If you feel Kylie is not autistic you need to challenge it. Have you read the criteria for autistic diagnosis? Does Kylie appear to match the criteria?

Good luck with Kylie and let me know how you get on.

Lisa

Posted: September 24 2005 at 8:32am | IP Logged

Hi

My name is Jane. I just joined yesterday. I was actually looking for a school for my daughter to go to when I stumbled upon this. Things have not been going well with my daughter's school. And there is no where that she can go. Services are very limited here and you have to fight for it. My daughter is 9 now. She was not diagnosed until she was almost 6. I knew something was wrong with her at birth but the pediatrician kept telling us that she was just developmentally delayed...what ever that means. She also has mild celebral palsy. Before she was diagnosed we did the Doman Delgado program out of Pennsylvania for 2 years. It was one of the hardest thing that we have ever done but we did not know what was wrong with her then. So we were willing to do anything and believe anyone that told us that that was the answer. We started on ABA right away after her diagnosis and it was the best thing we have ever done for her. I am still strugglling now. Seems like it is a constant battle. If not with the school, it is with the insurance company.  

Jane

Posted: September 24 2005 at 5:38pm | IP Logged

I am so glad that I found this site. since I have even been thinking about a chance of my son being on the Autistic Spectrum,  I have been searching for as much data as possible. finding this site with first hand experiences and people offering support for complete strangers is so incredibly humbling. I can only hope that I am lucky enough to connect with all of you out there.

My is 20 months and was recently (2 weeks ago) diagnosed on the autism spectrum.  Leading up to his evaluation I new in my heart that he would be diagnosed but the actual moment of hearing it has shattered my world and turned it upside down. I have 2 other kids as well.  I am still not adjusted to this diagnosis and have my moments of selfish breakdown, but I am ready to fight for him and get him the very best no matter what.  I just don't know what I need to be doing to get it.  He has a twin sister who is healthy (although somewhat developmentally delayed but gaining quickly).  They were born at 29 weeks weighed 2 1/2 pounds. He struggled for life for several days but he is a fighter and has really beaten all the odds. He is just amazing to me!  He had severe reflux as a baby for over 12 months and was in the hospital 8 1/2 weeks after birth before coming home (his twin sister as well). He was hospitalized for RSV and bronchiolits for a week last winter and spent the remainder of the winter on a nebulizer and in and out of the hosptial for close calls for breathing.  With all this craziness aside, he is so happy, content, adorable, and just my little man.  God do I love that boy.

He was diagnosed about 2 weeks ago and I have been pretty much in a fog since. He has already been receiving EI services since about 10 weeks old. We have been on weekly visits with an OT and developmental specialist (speech as well) for about 3 months and since we have bumped up to weekly visists and 2 providers per visit (one per twin) I have noticed a difference in his eye contact.  I am waiting for the day he responds to his name...I know that day will come!  We start intensive sessions next weeks at 6 additional hours + existing the EI visits per week. He wil start out with the 'floor time' approach as I think ABA and anything too structure would not work well for him at this point as he can get easily over stimulated and anxious. I work part time in/out of the house and very concerned how we will balance this as the hours of service will only increase. I need to do what is best for him and are considering moving if we have to if the school system is not up to par. I know I am jumping WAY ahead but I am thinking of when he turns 3 and no longer qualifies for EI or these additional services and want to be sure I am getting him teh best school services as possible.

I am so glad I have found this site. Thank you for reading my posting. 

Posted: September 24 2005 at 9:30pm | IP Logged

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Posted: September 25 2005 at 12:06am | IP Logged

I have a 5 year old with a form of autism Pdd nos)   she has the tense too bite

herself alot or she constantly through tantrums when she doesn't get her away

She has be having trouble going poop on the toilet but she can go seat on the toilet go pee in there.She also whinnes alot too.