how was your child diagnosed?

Terri - posted on 02/18/2010 ( 4 moms have responded )

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i've done a lot of research on autism and the various spectrum disorders, including AS, so i pretty much knew my son had it and the evaluation was, for me, just a formality. however, it was definitely something that was needed and had to be done because of course we wanted the diagnosis to be official and on record to receive any assistance possible. though this is something we've suspected for quite awhile, we just finally met w/ a psychiatrist yesterday who 'diagnosed' my son. he did not do any testing, and didn't even really talk to my son. he spent about 90 minutes talking w/ me and my husband and listening to us describe our son and why we think he has AS. for over a year now i've been having people suggest to me that my son might be autistic...his grandmother (who is a school counselor), two teachers, the school principal and assistant principal, his OT, and his pediatrician and psychologist. my son has already been diagnosed w/ ADHD and Sensory Processing Disorder and is receiving OT for that. the psychiatrist we saw to have my son formally evaluated said he does not do formal testing for autism because he has seen too many kids who passed the tests, but whose behavior indicated that they did indeed have the disorder. he said because we and so many others saw the symptoms ourselves that our pediatrician could have made the diagnosis on her own. he believes autism is more of a clinical diagnosis than something that needs to be proven w/ testing. i am comfortable w/ my son receiving the diagnosis w/ out testing only because of the research i've done and my conviction that he has AS; however, i was expecting the doc to perform some sort of tests or evaluations so i was a bit taken aback by this and even a little disappointed. i suppose i'm afraid that another doc later will contradict or dispute the diagnosis since no testing was done.

so on that note, i'm curious...what kind of testing or evaluations were done for your child?

on another note, my son's school has refused to give us an IEP or make any classroom modifications. they said an IEP is only given for subjects, not disorders. this was said when i sought an IEP based on the diagnosis of ADHD, but at the last ARD when i informed them he would be receiving testing for AS, they said that even if we got that diagnosis it wouldn't change anything because he is still getting good grades. while he IS getting good grades, he is very disruptive in class and his teacher has a very difficult time getting him to complete assignments or work in groups w/ the other kids. my son sits at a table by himself and has no friends as the other kids just pretty much ignore him. soooo...i am also wondering what y'all can tell me about any measures you've taken to help your child succeed in school and how the school is helping to make that happen. thanks!

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Debi - posted on 03/21/2010

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I had suspected, after researching online, that Joshua had this. But we took him to a pediatric neurologist for official testing and diagnosis. She confirmed our suspicions and now we are moving forward from here. I homeschool my son, so at this point, we are not doing any therapies or anything due to one hectic year. My homeschooling seems to be helping him a great deal and though we have slow, non-productive days sometimes, I wouldn't trade it for anything.

It sounds to me, Terri, that your child's school fails to understand fully what an IEP is for. Obviously they don't understand the workings of AS and on the outside, they see nothing wrong. You need to perhaps get an expert in the field to come with you to your next meeting to explain it to them. I'm new here so you may have done that already, just trying to offer suggestions. I pulled Joshua because he was so over stimulated that he was having MAJOR meltdowns at home every day after school. I don't know if he'll ever go back, so I am working to make it where he can function in a classroom setting in case he does return to public school.

Elizabeth - posted on 03/01/2010

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My son was dianosed in October with Asperger's. He has bipolar disorder nos but there were some symptoms that just didn't fit in with that diagnosis. I took him to the Barber National Insititute here and we were there for about an hour and a half. The lady asked me a lot of questions and observed my son. She also asked him some questions but not very many. In the end he did receive the Asperger's diagnosis to go along with his bipolar diagnosis.



As with the school, according to IDEA your child would qualify for an IEP under Autism since Asperger's is an Autism Spectrum Disorder. I would request in writing a complete evaluation for an IEP. Just because your son is making good grades or may even be Gifted doesn't mean that there aren't things going on during his school day that are causing him problems. Make sure to do the request for evaluation in writing since that legally starts a timeline for the school. You will also need to turn in a document from the doctor stating he has Asperger's so the school is aware of the diagnosis. Without this documentation a lot of schools will not do the evaluation. If you have any questions or problems with writing the letter to request the eval. you can go to www.Wrightslaw.com or www.Starfishadvocacy.org for help with the letters. I can also help you with the letter if you would like me to. Just send me a message.

Jessica - posted on 02/25/2010

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Hello,
I have a 16 year old son who was diagnosed with asbergers in the 5th grade. We had seen several doctors in our area throughout the years and he was given a diagnosis of ADHD, we knew this was not acurate, he has never been hyper and there was definately more going on. We finally paid out of pocket to have a neuropsychological and psychological evaluation done by Boston Neuropsychological Services. They went right to the school and did an entire day of testing. They wrote up the results along with anything that could have effected the testing in anyway such as interuptions etc. There were recomendations for school as well as home. The doctor also attended 2 IEP meetings with us to ensure that our son recieved an IEP that would be effective in meeting his needs. It was not cheap but worth every penny! We just had him retested and for whatever reason our insurance covered all but the regular co pay x2 for the 2 types of tests administered. The testing and recomendations were very helpful at home as well as school and I believe that in MA at least, that the school leagaly has to put the recomendations into the IEP.

The IEP can address his social issues and it makes a big difference! I don't know what state you live in or how the laws differ state to state but I know in MA the school is obligated by law to prepare kids not only academically but also to prepare them to be as independent as possible. What good is a diploma if the lack of social skills keeps them from getting and or keeping a job?

You are your childs best advocate! Don't give up! Get online and look for services for kids with asbergers, we hired an advocate recently and are going to push for a specialized placement to adress his significant social struggles that heve led to MAJOR anxiety, he is a sophmore and 16 years old, just 2 1/2 short yrs to get him ready to go to college or start a career.
My advice to you is not to accept what people tell you, you are his mom and God has given you the ability to know when things are not right with your child, also every once in awhile take a step back and reevaluate, being sure to see the big picture and your and your childs goals for him. It can get very hard to see the forest through the trees and you can loose sight of things when it seems you are constantly putting out fires. I am just learning this very important lesson! The sooner you get the diagnosis and supports in place the better for your child and you. We have found that the smallest changes made by teachers and staff can make a huge difference, but it is a challenge to get teachers educated about asbergers and to help them understand your child. Don't give up!

Get connected with people in your state who know the laws and supports available to you and your child. Many times you can get advocates who work on a sliding fee scale. try these sites:
pathwaysforparents.org
thefederationforchildrenwithspecialneehttp://www.aane.org/asperger_resources/a...
http://www.dlc-ma.org/ourwork.htm

I pray that you will get the help your son needs and that he will find a friend who will see the wonderful things about him that you as his mother know are hiding behind the insecurities and negative behaviors caused by not having his needs met.
God bless,
Jess

Heather - posted on 02/22/2010

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I FOUGHT with my ped. about my daughter, Katrina, (who is now 7) for years!! She was VERY smart but very detached emotionally (especially from me), had an extremely high tollerance for pain, would NOT eat, and threw HORRIBLE tantrums and all of these behavior became worse when at 3 we enrolled her in pre-school. She would wander out of the room, couldn't stay focused and would bite and hit. The Dr. kept insisting that she was an only child and spoiled and she needed structure and discipline. Finally, to shut me up I suspect, we got a referal for a neurologist. After spending 15 minutes with Katrina (asking her some questions doing a few motor skills tests) he said that he really believed she had Aspergers. That was 3 days before her 5th birthday. Her pediatrician's reply??? "At least its not autism". Needless to say, we don't see him anymore. Our new ped. has been keeping an eye on my son(16 months old) since birth and said that developmentally he is at the level of a 2 year old, but that if I ever want him tested for my own peace of mind she will make that happen for me.

We have been quite lucky with Katrina at school.She is in a typical class at a public elementary school, and has fallen in with an amazing group of children who are wonderful with her and in fact watch out for her. I hope that doesn't change as the years go by, but I fear it will. She is involved with a local agency, Friendship House, and they provide her with a dsp (direct service professional , same as a tss) who goes with her to school everyday. She also has an iep through the school district and goes to a learning support teacher for about 45 minutes a day to help with her handwriting. She has her good and bad days, but always is a straight A student.

Please keep me posted on you progress with your son and his school. How old is he anyway? Good luck to you!!! I know how hard it is

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