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Old 04-02-2008, 08:52 PM   #1
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Autism So many question and very little answers.

I am the mother of a 3 year old who has autism. i am very overwhelmed as far as who i should be talking to such as doctors and therapist and just overall what to expect and what i can do to help my child. he was in early steps and is now attending Special education elementary in there autism class. he only says a few words mostly mama !! he has been called "mildly autistic" mostly because he does not exhibit a lot of the "typical" autistic features. ican't really say that i noticed a change in his personality just that he was saying alot more words. his personality is the same he is so loving .loves to kiss and hug me and crawl in my lap, sometimes i chase him away b/c he is too affectionate ( maybe b/c he was born on valentines day ! ) he is not aggressive ,but he does get angry if he wants something and you can't figure out what it is. but the tantrum never last longer than a few seconds and then he is on to some thing else. ( his basic problems -says only about 6 words, like to jump, loves the credits at the end of a movie, like the weather channel, doesn't point to what he wants he pushes you to it. does not try to interact with kids unless it is initated but mostly he will play with his 6 yr old brother) he eats anything, sleeps well ( still in my bed ) loves to ride in car / bus never fusses about a change in routine. so im not sure what interventions i should try, like diet and medicine interventions. i'm just lost b/c their is so much information and i really don't know where to start. and one of the big things is that i want to get extra ST for my son and my insurance is no help they don't cover " nervous and mental conditions " specifically autism and any develpomental delays. my husband and i make " too much money " ( that does not take in account of bills, health ins, living expenses and school expenses , debt management and food ) so we don't qualify for any services b/c it gross income that is counted. ssi we make to much and medicaid and the buy in program we make too much, and the services that don't count income the waiver program has a list back to 1995 and cash subsudiy back to 2004. there is no help to build on for your child. i would put the money up for himb/c i don't know what his future will be like ( i hopeful that he will be able to speak and go to college ) but i could also use it for extra therapy for him. i'm going to do what i can but it's sad when you pay 700.oo a month for ins and you can't go see the doctors you need to b/c they dont cover autism. or go broke trying to help your child. there needs to be more reform. whoa, i just neede to vent, but i am loking fore any help i can get i'm willing to try anything to help him talk.

 
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Old 04-03-2008, 10:09 AM   #2
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Re: Autism So many question and very little answers.

I just wanted to say HI and tell you that you are obviously not alone My son is now 16 and it seems like 3 was forever ago. I can only tell you from my experience. Things progress, things change and get better. I remember I was told my son would never know what a cat was or that it meowed etc. He has been mainstreamed since 1st grade and is doing amazingly well.

There is no one that can tell you how far your child or any child will go. The possibilties are endless. I remember thinking am I sending him to the right school, the right class, the right food, the right this and that. It is all a long trial and error journey. You have to follow you gut and your heart. You know what is best for your child. Do not let anyone ever tell you different. I know it is overwhelming. It still is for me. I just know that I am doing the best I can for my child and loving him endlessly.

I hope this helps.


 
Old 04-03-2008, 01:25 PM   #3
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Re: Autism So many question and very little answers.

Have you looked at specific webpages designated to Autism, therapies, and resources. I think there's Autism Today?? I can't say without looking it up. There's also a lot being done by the group that Jenny McCarthy is heading up. I would start there and also possibly contact your insurance company and ask them specifically what you need to do to get more coverage, or if they have any recommendations. Also, most counties provide activities for parents with autistic children. Other parents can be a great resource because they obviously understand what you're going through and could point you in the right direction for doctors, therapy, etc.

 
Old 04-03-2008, 05:23 PM   #4
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Smile Re: Autism So many question and very little answers.

My heart goes out to you.My son is autistic.I am curious as to the type of DR that diagnosed your son?When my son was 3 two different neurologists made the diagnosis.He said a few words by age 4.When he was almost 7 he finally began to speak some sentences.My son is now 18.
Autism has been covered under are medical insurance as a neurological disorder.You need to look into your insurance.
Of course now days it would not shock me for medical insurance to try to opt out of this coverage and claim it as a mental disorder.
Early intervention in regards to education is vital.You are on the right path!You as a parent have rights under the Special education Laws.These rights include speech,occupational and other therapy that the public school MUST provide at NO additional cost to you!
If they fail to provide the services needed they Must Pay for outside sources.
My best advice would be to get a disability advocate to help you with resourses etc...They charge no fee and are wonderful.Hope this helps.MB

 
Old 04-03-2008, 07:46 PM   #5
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Re: Autism So many question and very little answers.

Most medical insurance won't pay for Asperger's Syndrome. But it will pay for the effects, such as anxiety, depression, etc, so the doctor has to know to code it with depression or some other symptom as primary, and the autism as secondary. Find the "medical" reason for each thing you need, and have the doctor file it as that, not autism.

My son and I both have Aspergers, and we're both logical people, so when my son was little, and he wouldn't say what he wanted, just point, I'd get down at his level eye-to-eye and explain that mommy was getting frustrated, mommy couldn't read his mind, and if he wanted something he had to say what it was, otherwise he wouldn't get it and we would both get upset. I told him that I would do my best to get him whatever he wanted, but he had to say it. I don't think he understood that MOMMY could get frustrated and mommy wasn't understanding what he was "saying". He was a very well-behaved child who always wanted mommy to be happy, so he would try to comply. My son was definitely more verbal than yours, but this is what worked for me.

Last edited by roses4lace; 04-03-2008 at 07:47 PM.

 
Old 04-03-2008, 08:38 PM   #6
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Talking Re: Autism So many question and very little answers.

[QUOTE=maebelle;3515997]My heart goes out to you.My son is autistic.I am curious as to the type of DR that diagnosed your son?When my son was 3 two different neurologists made the diagnosis.He said a few words by age 4.When he was almost 7 he finally began to speak some sentences.My son is now 18.
Autism has been covered under are medical insurance as a neurological disorder.You need to look into your insurance."

WHEN I FIRST TOOK MY SON TO A NEUROLOGIST BECAUSE WE WANT TO RULE OUT AUTISM , NEROLOGIC DISORDER or DEVELOPMENTAL DELAYS. AND HER dx was a speech delay with autism features, but on the dx sheet she coded autism. we have BCBS of MS. and they consider autism, & develpomental delays as being a mental disorder. they don't even cover depression or counceling services ( they don't cover any services speech or even the NEURO visits b/c it relates to his autism ). and they would not even pay for the initial NEURO visit ! the doctor changed the DX to speech apraxia which they pay for. he was formally diagnoised by the school system as meeting the criteria for autism. i due to see my pediatrian this month and there are a few DAN doctors in town that i need to contact. THANK YOU ALL FOR THE REPLYS AND ENCOURAGEMENT , I REALLY NEED IT. iT SO HARD being a nurse and knowing typically what a patient needs ( antibiotics . b/p meds, insulin ) and there is usually a well established approach that works, but with autism there is no clear help , so i think i'm taking it hard. but i love my little "budda bear " so i did find some web sites where you could pre orer the food and depending on how much food is included it willbe easier than looking for the food in the stores ! and i'm going to try the epson salt soaks and vitamin?cod liver oil first and whatch for improvent and then go to the diet. which if you catch the name budda he is a big boy and likes to eat ! absolutely anything !

 
Old 04-07-2008, 02:24 PM   #7
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Re: Autism So many question and very little answers.

I also do not have anyone in my family with autism but i am watching this issue as well. i have many nieces and nephews who are going to be getting married and having children someday. We have ADD in our family...5 out of 7 of my nieces and nephews.
Everyone here on this board cares and has interesting ideas as to what might be causing the increase.
I think genetics has something to do with it since boys outnumber girls. if genetics was not playing a part the same number of girls as boys would be having Autism.

So genetically boys are predisposed and why in the heck is that?
then something happens in their early development, a trauma perhaps or vaccines, not a healthy early diet (formula) and we are off to the races.

 
Old 04-08-2008, 03:32 PM   #8
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Re: Autism So many question and very little answers.

golfhat,
The major hypothesis about why ASDs affect males more than females deals with fetal testosterone. The hypothesis, which I personally support, states that an excess of testosterone in the womb allows for brain changes. Males are more likely to have many developmental disorders besides ASDs, such as ADD/ADHD, dyslexia, conduct problems, and other learning disorders. The testosterone hypothesis also is linked to left-handedness, and more males than females are left-handed. Also, there is an increased incidence of left-handedness in those with neuropsychiatric disorders.

I believe in the genetic basis of autism, to a degree. There does indeed seem to be a strong genetic link involved. However, many people with ASDs don't have any family members with ASDs. I am one of them. I have no idea where my Asperger's came from. Nobody in my family even has the traits of the "broader autism phenotype." I largely believe in the fetal testosterone hypothesis for my AS. I also am left-handed, and there are only a handful of other lefties in my family, none of whom are close relatives.
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Last edited by GatsbyLuvr1920; 04-08-2008 at 03:33 PM.

 
Old 04-08-2008, 09:09 PM   #9
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Re: Autism So many question and very little answers.

Quote:
Originally Posted by maebelle View Post
You as a parent have rights under the Special education Laws.These rights include speech,occupational and other therapy that the public school MUST provide at NO additional cost to you!
If they fail to provide the services needed they Must Pay for outside sources.
My best advice would be to get a disability advocate to help you with resourses etc...They charge no fee and are wonderful.Hope this helps.MB
Not only must the public school provide these services, the service must provide more than minimal or trivial benefit at no expense to you regardless of your income. For example speech therapists and OTs in public schools are often overloaded and may not be able to devote the amount of time needed to benefit your child. 15 min/week of speech therapy is not going to provide more than minimal or trivial benefit.

I went through due process for my daughter 10 years ago. I'm not saying it's for everyone but it was the best decision I ever made.

 
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