Son (finally) offically dx with autism...now how will it help us? - Mothering Forums
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#1 of 8 Old 12-03-2011, 11:23 AM - Thread Starter
 
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So we took our son to KK this week and 4 months after contacting EI, he has been offically dx with autism. He was evaluated by a OT, ST, and clinical psychologist. He has not seen a dev ped yet, but we're on the wait list.

 

Now that we have the dx, I wonder if it was the right thing to get it. What can we use it for? All of the services we're getting through EI and will be getting through the school system don't require a dx. I know we can now apply for the autism waiver, but what else is a dx good for?


Mommy to beauties DS1 (7), DS2 (4, autism), & DS3 (2)

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#2 of 8 Old 12-03-2011, 01:35 PM
 
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In my state, most private insurance excludes payment for speech therapy, OT, etc. for all developmental disorders, except autism spectrum disorders. They are are required to pay for autism treatment. An ASD diagnosis is a magic ticket.

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#3 of 8 Old 12-03-2011, 02:01 PM - Thread Starter
 
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Originally Posted by RiverTam View Post

In my state, most private insurance excludes payment for speech therapy, OT, etc. for all developmental disorders, except autism spectrum disorders. They are are required to pay for autism treatment. An ASD diagnosis is a magic ticket.



Wow I didn't know, thanks!! He's getting all of that right now through EI but once he turns 3 in March I'm sure I'll need to start looking for private therapists.


Mommy to beauties DS1 (7), DS2 (4, autism), & DS3 (2)

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#4 of 8 Old 12-04-2011, 07:26 AM
 
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Wow I didn't know, thanks!! He's getting all of that right now through EI but once he turns 3 in March I'm sure I'll need to start looking for private therapists.



It's really a state-by-state decision. I live in Illinois. 

 

Even if your state doesn't require insurance to cover autism treatment, there may be other funding sources or services  that you can only get access to if you have an autism dx.  Locally to me, SIUC provides many free therapy services through their university clinic if you have a DX. University of Missouri does low cost services through a clinic in Columbia, MO. 

 

Easter Seals chapters also provide services to families with a kid with autism, including different kinds of therapy and recreational opportunities. (summer camp!)

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#5 of 8 Old 12-04-2011, 11:28 AM
 
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I saw our autism diagnosis as an explanation more than an end in itself. It really helped me to understand YoungSon's behavior. We never took advantage of therapies or programs. Nothing available really met our needs. But the autism perspective (and sensory processing issues) explained SO MUCH, and really helped us support YoungSon and structure his world to a life he can be successful in and even thrive. At 15, nearly all the visible autism and sensory symptoms have disappeared. His autism has become more a facet of his personality than a disability.


Rhu - mother,grandmother,daughter,sister,friend-foster,adoptive,and biological;not necessarily in that order. Some of it's magic, some of it's tragic, but I had a good life all the way (Jimmy Buffet)

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#6 of 8 Old 12-04-2011, 02:08 PM
 
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DS got his official diagnosis of autism a week after he turned 3. (He is now 7.)  Here is how getting an official diagnosis benefited us:

 

Insurance:

 

In my state, coverage for autism therapies is not mandated, so some insurance companies cover it and some do not. At the time we got the diagnosis, our insurance did cover speech and OT for autism spectrum disorders. Previously, DS had received this services with a diagnosis of developmental delay/language delay and they had NOT been covered under those diagnosis.  Currently, our insurance does not cover services for ASD, (new employer, new insurance), but I'm glad that for the first couple of years we had insurance that did.

 

Explanation for issues:

 

The diagnostic process took nearly 5 months and was very thorough. Tests were done to rule out things like metabolic disorders, known genetic disorders, seizures, hearing problems, etc . After everything else that could be possible was ruled out, autism was what was left. So we were able to feel confident that we had a correct diagnosis and we were not missing some other medical issue that should be treated first. (DS's severe vision problems were discovered at this time.)

 

Prior to getting the official diagnosis, we had family members who blamed us and our parenting style for all of DS's behavioral difficulties and language problems.  So in a way, getting the diagnosis was a relief because it reassured us that wasn't true.  Then we were able tell those relatives that a whole team of doctors at Children's Hospital said that it wasn't our fault, and that DS had a disorder. We were able to start educating those family members about what was really going on.

 

Roadmap:

 

Getting a diagnosis made it possible for us to find information about various treatments and techniques we could use for helping make like easier at home, at school, and in the community.

 

Soon after DS was diagnosed, I found something really great in one of the books I was reading (I read so many I have no idea which one it was, but this story always stuck with me.) A Dad was explaining why he sought a diagnosis for his son, while friends and relatives urged to fight against a "label" and let his son be "just Jake".  The Dad told them: " There is no treatment for services for 'just Jake'. Nobody is doing research on 'just Jake'.  No one has studied the long-term development and prognosis for 'just Jake'.  Autism doesn't make him less Jake, but it gives us these things."  That really rings true for me. 

 

Resources & services:

 

We found that having an autism diagnosis opens  the door to many resources and services that are not available with a "developmental delay" or a "language delay" diagnosis.  This has been especially true in getting services from the school.

 

Community:

 

Getting a diagnosis led to us becoming active in the local autism community. When DS was a preschooler, we went to a weekly autism playgroup and we go to support group meetings, autism events, etc.  Our local autism community is wonderful and being a part of it has benefited us so much. DH and I got to meet other families who have kids with autism and exchange information about doctors, therapists, schools, interventions, etc.  We have swapped IEPs with other families so we could learn what to ask for and see what services other districts offer.  DH found it extremely helpful to talk with other Dads and to see how they interact with their kids.  DS loves being around other kids with autism and it is good for him to know a group of kids who are like him.

 

So that is what we get out of having a diagnosis.  I hope that helps.

 

 

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Mom to an amazing little guy, age 9 (Autism, Hyperlexia, Dyspraxia, Albinism, Chromosome Microdeletion)

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#7 of 8 Old 12-04-2011, 05:50 PM
 
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Originally Posted by JFTB1177 View Post
 All of the services we're getting through EI and will be getting through the school system don't require a dx.


 

Although that's true for now, it ends when  he is school age. For school age kids, accommodations and services are only available to kids with a solid dx.

 

I totally agree with Lollybrat about "roadmapping."  Having a dx can make the next step more clear.


but everything has pros and cons  shrug.gif

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#8 of 8 Old 12-06-2011, 02:13 PM
 
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Originally Posted by Linda on the move View Post


 

Although that's true for now, it ends when  he is school age. For school age kids, accommodations and services are only available to kids with a solid dx.

 

This is untrue, or at least it's not always true.  DD does not have a dx but gets services and accommodations in her elementary school.  (The neurologist we saw in June officially called her "borderline for ADHD, borderline for Asperger's"... I was actually hoping for a dx!! because DH's old company offered a special benefit program for kids with autism!)
 

 


Erin, mom to DD (1/06) and DS (10/09)
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