Hello everyone, I am new to this all. I have read over some of your posts and found a lot of info.
My daughter is 6 yrs old and she is being sent to Rileys Childrens hospital for testing of aspergers. I had no idea she had something like this. She has always had her quirks, she has always been emotional. I decided last year to keep her out of kindergarten because of the way she is. I had considered homeschooling. Now a friend who teaches sp/ed suggested I have her tested for aspergers. My ped referred us to the hospital. I have spent weeks now doing so much research, it is a lot to take in all at once.

Now I find out that my insurance doesn't cover any autism at all. We have a law here that insurance must cover it unless the employer self insures it's employees.
So what I am asking is do you have any suggestions on where to turn? I am in the US and I have no idea where to turn first.

I look forward sharing my journey with you all.
thanks,
Katt

Hi,
What state are you in? The procedures and services vary greatly from one state to another. I did a search on the hospital you mentioned and am guessing that you live in Indiana.
Where I live, Wisconsin, the school system is responsible for providing therapy for children who need it and are over age 3. I think this is true for home schooled kids too. Once you have a diagnosis you can apply for Medicaid for your child. If you are able to get Medicaid, they will pay for services that aren't covered by your insurance.
My kids have Autism. I am not sure of what the differences are as far as how aspergers is handled. I'm sorry I don't have more specific information to give you. Good luck in your quest!

Thanks for your response, yes we are in Indiana but I didn't know the rules on posting it.

I am going to spend the day making phone calls and doing more research online.

It seems to me that there are more laws in place for schooling of children with autism spectrum but forget medical help. I know school is important but I think my daughter getting the right treatment is more important. I certainly do not trust the school system here to do the right thing the right way.

Medicad & all that is what I am not sure of. Our income may be too much, I don't know.

I suppose there is no avoiding being on the phone all day huh?

Thanks again,
Katt

Katt; My insurance company didn't cover my son's evaluation as they were initially going to bill it. It didn't cover for the Neuropsyc exam. What I did was spoke with the area at the Hospital that does these exams and told them he was not covered for it. They have a way of billing it so that it is a medical examination vs psychological exam which it was completely covered. I suggest you call them and see what options they may be able to provide to accomplish what you are looking for. Skip talking to the insurance company; that's where you will end up on the phone all day. Take five minutes and see how the hospital can help. I hope it works for you as it did for me. In our case I think we were assigned different staff who had the medical experience to make such dx instead of the Neuro Psyc. Good Luck

Hi,
When I applied for Medicaid for my boys they didn't take into account the parents finances. It was solely based on the child's income and assets. They couldn't have more than $2000 in savings (I'm not sure if they count college savings plans) and I don't remember what the income limit was. thanks! karen

In order to get a diganosis, you could see a child psychologist for an adhd evaluation. While there you could discuss the Aspergers. This way you could at least get a diganosis but it can be billed under adhd which will be covered.

Hi,

I know your looking for insurance answers, but I would be interested in hearing a little more of your daughters symptoms and quirks, I have a 3yr old who I am very concerned about and aspergers has crossed my mind. Thanks for any info you can give me.

Hi everyone thanks for your replies,
My insurance will pay for the evaluation & testing but they will not pay for treatment if she is dx'd with any form of autism. I can work with this, I know there are a lot of programs here that help with treatment/therapy.

Mary02~
Where to start? My daughter is 6 and I have only had about a month of learning about autism/aspergers. I had never heard of aspergers or even considered there was something like this going on with my daughter. The funny thing is that a lot of her symptoms are better now than they used to be. We have been doing something right.
Its' hard trying to remember, you get so used to living with it, it becomes normal. For the most part, she hated buttons, she screamed and cried in terror over any button. This started about 2-3 yrs old. One of the biggest problems I have had is communicating with her, I feel like I am trying to run full speed thru a brick wall over simple explanations. She is a very smart girl, she talks well, she can follow directions if explained she is loving but try to explain something to her and it's like she cannot get it and easily gets frustrated and a meltdown begins. I can't call them temper tantrums because she sounds so like her heart is breaking, temper is involved but not because she is mad and acting out but because she is frustrated, a lot of times she tells me that I don't understand what she is trying to tell me.
She also loves art & tape. She can color, paint, do any kind of art work for hours. She has been doing this since she learned to hold a pencil. She is also a collector of anything small, coins, beads, shredded paper. She cannot take a joke, if you joke around with her she gets offended & screams to stop laughing at her. She talks at you not to you, she has dialog that goes on & on, god help you if you interrupt or try a 2 way conversation. She is also lacking in empathy or concern for others. We had a hard time trying to teach her that others feel pain too. Physical & emotional. She also has high anxiety & panic attacks sort of. Loud noises,cause attack that ends soon after the noise. Bugs, anxiety attack until bug is gone. She doesn't do a full blown panic attack.
Ok this is really long sorry, if you need anymore let me know.
Katt

Katt,

I am also in Indiana and had the same problem that you are currently having when my boys were much younger. I think it is unfair that some insurance companies will not cover any Autsim issues, including diagnosis and treatment.

You can always request the school to do testing for Autsim, they have 60 school days to get the testing done in Indiana.

I am also in Indiana! hello hoosier!
Denise

katt- I'd also be interested in hearing more about your daughter's symptoms. I was recently diagnosed with mild Asperger's a few months ago, and since I'm 18, it's kind of hard to remember all of the chaos that my mom and I went through when I was younger. The thing about your daughter that most reminded me of myself was how she gets into tantrums of sorts because she's frustrated and can't understand something. I had a mild tantrum (privately, in my dorm room) today, in fact, for the exact same reason. I appreciate it! :angel:
-GatsbyLuvr1920-

Then what the heck does my son have? I've been reading some of the symptoms and some of it sounds like my son but most of it doesn't. He does have the sensory sensitivities. Loud noises it was much worse when he was younger, if I took him on the a public city bus he'd scream and cry and say he was scared the bus stop is right near the play ground and I often worried how many people on the bus thought I'd just kidnapped him from the playground with the way he was acting. Now no problems with public transportation. He doesn't have tantrums, he has good eye contact, he can hold a 2 way conversation, he gets a little fixated on something for a while like a show or a book but does eventually move on to something else, he still has some fine motor skill problems with writing,scissors,buttons. But he does keep trying to master these skills I don't know if it's because I'm a bit pushy and instill in him that he can do it or what. He does flap his hands and jump but only when he's excited and can't wait to tell you something or has to go to the bathroom. He is very nervous about his sense of gravity and is a very careful kid so he doesn't do much climbing but he can do it. He's 4 and still doesn't alternate feet going up and down stairs. But he is smart as a heck he can use the computer better than his Dad, he can tell you about cars what kind it is but nothing too intense like how an engine works shoot I barely know how an engine works. He has an incredible memory. What does my son have????? I was thinking aspergers because of his social issues but now I'm unsure. I know your all gonna say have him evaluated , end of April. But it seems like a lifetime away.

Hi everyone!

I have been posting under childrens health issues regarding my 6 year old. I came to this site and I started to cry because you all have the same issues I have been dealing with. I'm pasting part of my other post here to show you what I mean.
This is a partial list of his "symptoms"? if you want to call them that or just my observations.
Burned himself all the time(sensory issues)
Stove
Candle
Fireplace
Drank hot water
Pans on stove
Licked pan on stove

Licks people
Touches people
Hugging people
Gets angry instantly
Absent minded
Stands around naked and unless and required to dress will stay that way
Cant stay focused to get tasks done
Puts his face in others faces
Reads at an advanced level
Can do math really well
Can load and save things on a computer under his own name
Dislikes sports
Loves video games and TV
Likes to cuddle
hates anything to do with fine motor skills
very uncoordinated
people say he is lofty or quirky
He prefers to be alone at recess.

He is seeing a psychologist right now which is giving him an iq test the next time we meet. She thinks it is a high functioning aspbergers even though he doesnt fit in every catagory. I'm starting to agree because nothing we have done has helped at all!!!

I hope this helps and I hope if someone has other information for us they post it here. I'm sooooo exhausted and frustrated and confused.

There is an organization in Indiana called Indiana Protection and Advocacy Services. I've used them before myself. I'm from Indiana as well. It's a state agency and it's totally free and they may be able to help you. The toll-free number is 1-800-622-4845. I actually had a case worker come into my home and be an advocate for my son who was trying to get vocational rehab services to attend vocational school.

Then what the heck does my son have? I've been reading some of the symptoms and some of it sounds like my son but most of it doesn't. He does have the sensory sensitivities. Loud noises it was much worse when he was younger, if I took him on the a public city bus he'd scream and cry and say he was scared the bus stop is right near the play ground and I often worried how many people on the bus thought I'd just kidnapped him from the playground with the way he was acting. Now no problems with public transportation. He doesn't have tantrums, he has good eye contact, he can hold a 2 way conversation, he gets a little fixated on something for a while like a show or a book but does eventually move on to something else, he still has some fine motor skill problems with writing,scissors,buttons. But he does keep trying to master these skills I don't know if it's because I'm a bit pushy and instill in him that he can do it or what. He does flap his hands and jump but only when he's excited and can't wait to tell you something or has to go to the bathroom. He is very nervous about his sense of gravity and is a very careful kid so he doesn't do much climbing but he can do it. He's 4 and still doesn't alternate feet going up and down stairs. But he is smart as a heck he can use the computer better than his Dad, he can tell you about cars what kind it is but nothing too intense like how an engine works shoot I barely know how an engine works. He has an incredible memory. What does my son have????? I was thinking aspergers because of his social issues but now I'm unsure. I know your all gonna say have him evaluated , end of April. But it seems like a lifetime away.

It could be Aspergers. The thing I've noticed with my son who is now 19 is that his coping skills improved over time and at times he appears to not have a disability at all and then occasionally he will do something or say something that reminds me of the boy from early on. Often I'm surprised by his responses for instance: He is applying for social security disability and the examiner asked him if he could handle his own money. He said yes he thought so. The examiner said if you had 5 dollars and bought a three dollar gallon of milk how much change would you get back. I was sure he would know the answer but his response was. Well, I would have to write it down on paper to know for sure but I think I would get back 1 or 2 dollars. I was reminded very quickly that my son is not ready to be out on his own in society, but most people would not guess that by talkng with him or observing him. His coping skills have helped in somewhat to be able to blend into society, but there is still dealys that are quite evident.

Heart~
Thankx for the info. we go to Rileys on 4/06 for the evaluation & after I get a dx hopefully I can get help.
The strange thing is all of the evaluations are covered but no therapies.

thanks again

Katt

Katjo doesn't your state provide for services once there is a diagnosis?

I, too, am from Indiana. My grandson was diagnosed through the school when he was three. He was a late bloomer in terms of his speech, so as soon as he turned three, we took him in for a speech evaluation. They came back with an "autism" diagnosis. We were shocked! It has been almost a year and a half since that meeting, and Drake has been in their developmental preschool for that time. He has improved GREATLY! He talks, with quite a large vocabulary, is smart and catches onto stuff easily, is socially far more appropriate than he once was, and is blessed with a very loving teacher and a class of 5 students. We have a case conference in a couple of weeks, and with a July birthday, they will recommend that he be in the program for another year, which his parents and I support.He is a happy, cheerful little guy who loves to sing, has perfect pitch, and a sweet voice. My son called me from his car the other day when he had picked him up from the sitter, and asked me to just listen. He put the phone to the back seat where I could hear Drake singing a song that he had just made up about me. We opted, in our little burg, to opt for the preschool and alternative treatments that insurance would not have covered anyway. However, I appreciate the 800 number, and am open to any other resources that might be available to help with the alternative treatment approaches.

I'll be anxious to hear what you learn from Riley.

My thoughts are with you....
Nancy

Hi everyone~
We went to Riley's on Thursday & came back with a dx of sensory integration dysfunction. I am not pleased. SID is supposed to be dx'd by an occupational Therapist & we never saw one that day. We were there for a couple of hours & they did IQ tests I guess, & they said she was below average (I beg to differ) She has never been in school and she is 6 now. We watched during thei academic testing and Morgan got up danced around and never really paid attention the the questions. They told me "she did really we in a structured environment" No she did not!
I will have to post more later, I have parent- teacher conference in an hour

katt

I just remembered that when we took our 6 year old in for testing we never mentioned anything other than teacher saying he has issues and our insurance co said we could take him for 30 sessions that they would cover.
I don't know if they will cover any after he is diagnosed with something. He has the IQ test next week which I have read is the last step in saying it is aspergers.

I just wanted to mention--I am in Indiana. We went to Riley (paid out of pocket for the same reason). Like you it was a terrible evaluation and no help at all. A real waste of money. I later found out that McDougle up there doesn't even think aspberger's actually exists! We went to a private psychiatrist in Bloomington Indiana who specializes in high functioning autism. She was very helpful and knowledgeable. She can also assess intelligence accurately when sensory issues or autism are interfering. She also billed in a way that may get reimbursed--we'll see when we file it. I wonder if going to someone else might be a better option for you? Her name is Robin Murphy and she is in Bloomington Indiana. I am confident she could give you an accurate diagnosis.