is there an advantage to getting an autism diagnosis? - Mothering Forums

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Old 09-18-2008, 10:39 PM - Thread Starter
 
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just wondering....

we could, but we haven't. and i'm wondering what advantage there might be. the boy is in a great preschool program with atypical and NT kids, he gets ST, PT and OT at school. he's newly 3. we've felt that we didn't want to go the diagnosis route until later. are we missing out on something?
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Old 09-18-2008, 10:55 PM
 
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There are advantages, but there are also disadvantages. The main advantages are for your peace of mind, if you feel you need a diagnosis, and also for eligibility. A child with an autism spectrum diagnosis is able to access many more services, and more hours of treatment than a child with the same developmental profile but no diagnosis.

Disadvantages include a diagnosis which can make it more difficult for your child later in life (mostly in adulthood) in other ways, since if he is documented as being autistic, he may struggle with accessing good insurance, or being barred from other programs which define autism spectrum individuals as undesirable, or less capable. Some schools will also have low expectations for autistic kids, and you may want to avoid the label for that reason.

Is he making good progress? You sound pretty happy with where he is. If he's doing well, and you expect him to keep doing well, just go with it. Just keep in mind that if you do decide to go the diagnosis route, it could take months to get an appointment.
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Old 09-18-2008, 11:05 PM
 
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Personally, I think there is an advantage to having a diagnosis. My son is 4 years old and received his official diagnosis of High Functioning Autism a week after his 3rd birthday.

First, there is the diagnositic process itself. the developmental peds at our local children's hosptial are very thorough and the diagnositc process took about 6 months. During this time they ruled out other possibilities, such as metabolic disorders, genetic disorders, and seizure disorder. I feel that this is very important. I did not want to spend years during autism therapies just to find out years down the line that it was a different type of problem. Also, during the diagnostic process we did a lot of paperwork. My son's preschool teachers, early intervention specialists, and therapists all filled out questionaires, just as we did. Looking over their responses gave us a better understanding of pur son's strengths and weaknesses in different settings.

Secondly, having a diagnosis helped with insurance matters. Although my son gets ST and OT at school, we decided to get him private ST and OT as well. Our insurance covers these services because of the autism diagnosis. Of course this differs among insurance companies and states, so this may not be a factor for some families.

Thirdly, having an official diagnosis really made our lives easier. Yes, it was very difficult to hear, but in a way it was also a relief. Knowing that it is autism has helped us understand our son. It gave us a direction as to what therapies to try and what books to read. We immediately started ABA, which has helped our son tremendously. The diagnosis also finally silenced the criticism of relatives who had been sure that the whole problem was our parenting.

So for us, yes there have been benefits from the diagnosis. I'm not saying that this is the right choice for all families, but it was the right one for ours.

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

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Old 09-18-2008, 11:18 PM
 
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It's hard to not get a diagnosis. It's lonely and makes it harder to explain to people.

But, unless you are 100% sure it is a typical (whatever that is) form of autism that would respond best to the regular therapies offered by your insurance or your school system, then it may very well be better to wait. My dd is not diagnosed with anything. She does not need a diagnosis until she is 7 in order to receive services. Had I gotten an austism diagnosis for her, which never quite fit, then she would have received a specific set of services. If she has x, she gets y. These would not have been the best services for her. Instead, during IEP development everyone has to think about her as an individual, tailor services to her. I believe we have gotten much better results this way. Worst case, I could always go back and get a diagnosis for her. But, it's harder to remove a diagnosis. At 7 or so, a lot of tests and evaluations become more accurate, so you're also likely to get a more useful diagnosis when you get one.

I think I answered your question backwards. The advantage of a diagnosis would come if you felt that the regular services given to autistic kids would best fit your ds for the long term, then it's much easier. Everyone knows what autism is. There are support groups and message boards and tons of books. If you are certain the diagnosis fits and will not change, then it's certainly a good idea to get it. If you are unsatisfied with the services or coverage you get, and you know the services or coverage provided to people with the diagnosis are better, then go for it. Sometimes, though, the autism diagnosis can rule out insurance coverage for certain things, so that's important to check.
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Old 09-18-2008, 11:30 PM
 
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In my state having a child diagnosed with autism makes it easier for parents to secure the necessary services which can make a tremendous difference for a child. If the child has autism, you can ask for more things in the IFSP or IEP. For the sake of getting services (OT, ST, PT, ABA/VB, RDI, DIR) here, it's better to have an autism diagnosis rather than PPD-NOS or Asperger's. Yes, it's splitting hairs but a full-blown autism diagnosis gets more attention.

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Old 09-19-2008, 12:57 AM
 
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I really think it depends on a couple of factors:
would it change anything for the child for the better (particularly services)
and does the parent or child "need to know"

For me I felt I might be losing it. I was driving myself nuts with "is he or isn't he" and watching everything he did. I needed to know to let go of the fear. And I needed to know because hubby and family just "didn't see it" and so I felt unsupported and questioned my own judgement.

For that we got an "unofficial" diagnosis. We had an assessment and were told he was on the spectrum but asked that it not be official. We paid out of pocket and never filed any insurance so there was no paper trail.

And then we figured out that as he aged out of early intervention we wanted to get some specific therapy. So we need a diagnosis for insurance so we could afford private OT and RDI. So we got an "official" diagnosis at that point.

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Old 09-19-2008, 10:38 AM
 
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If the early interventioin program feels their are markers, and send us off to therapy, and then hand us over to the school board at 3 wont that "mark" her name? Since she would be through the state?
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Old 09-19-2008, 10:41 AM
 
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Originally Posted by Aridel View Post
There are advantages, but there are also disadvantages. The main advantages are for your peace of mind, if you feel you need a diagnosis, and also for eligibility. A child with an autism spectrum diagnosis is able to access many more services, and more hours of treatment than a child with the same developmental profile but no diagnosis.

Disadvantages include a diagnosis which can make it more difficult for your child later in life (mostly in adulthood) in other ways, since if he is documented as being autistic, he may struggle with accessing good insurance, or being barred from other programs which define autism spectrum individuals as undesirable, or less capable. Some schools will also have low expectations for autistic kids, and you may want to avoid the label for that reason.

Is he making good progress? You sound pretty happy with where he is. If he's doing well, and you expect him to keep doing well, just go with it. Just keep in mind that if you do decide to go the diagnosis route, it could take months to get an appointment.
:

I think the biggest advantage is qualifying for services.

The biggest disadvantage is the label.
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Old 09-19-2008, 11:37 AM
 
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The biggest advantage is qualification for services. In some states, beyond birth-3/ EI, you must have a diagnosis (of some kind) to qualify for many in school services. Unless you have a speech eval. you can't get ST, ect..

We are homeschooling our DD. She is 5. She has been diagnosed with Asperger's. Did I need this? No. Why did I get it? I needed access to OT for her, and I can't afford to pay out of pocket. It also helps explain some of her behavior to others. She doesn't have any obvious stimming or language delays, or cognitive issues. She is just quirky, and doesn't get social cues very well. This can be hard for her in group settings. I like having the other parents aware so they can help their own children understand.

My last reason, which may not apply to you, was a feeling of responsibility. I am her parent. It is up to me to get as much info as I can to help her. I felt irresponsible not knowing for sure, even though my immediate family/friends/ parenting community were all very supportive of what I was already doing for her on my own. She may want/need to know in the near future. I have not discussed labels, or diagnosis with her at this point. For her nothing has changed, but in a few years, who knows?

Mama to 4 darlings. A ('03), O and K ('06), A ('09), and wife to M since 2002.
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Old 09-19-2008, 04:05 PM
 
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Depends what your goals are and what services you want to seek later. As others have said, in many states you have to have a DX of some sort to get services beyond 3 years old. Thats what pushed us to get the DX and also for piece of mind. I knew what it was, it had a name and I could better understand my child and what he needed.

Mom to Joscelyne 14, Andrew 12, and Mackenzie 10 and wife to Nate.
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Old 09-19-2008, 06:07 PM
 
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We don't have an official diagnosis. I have read the dsm-iv and she is definitely on the spectrum, although whether she is PDD-NOS or "high functioning" autistic I am not sure (I have read in several places that HFA isn't a real diagnosis, but then I see people who say they got that as their diagnosis... so I dunno)

I tell people she is autistic, I have never had anyone ask me for proof. As far as friends, people we meet, family, etc. I mean. So I don't feel that I need it to be official to explain to people.

For services though our insurance we would need an official dx and we are considering it for that reason.

We are going to homeschool and would prefer to avoid the whole school system/IEP etc if we can help it - although we never rule out anything forever - so it wouldn't be useful to us for that reason either.

I agree that you have to look at the pros and cons for your family individually before deciding when to pursue it. good luck

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Old 09-19-2008, 10:24 PM - Thread Starter
 
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i really appreciate everybody's responses. you have all given me many different sides.

basically, based on what you guys have told me, i feel pretty comfortable with our current status of just getting the services we receive through his IEP. we are very happy with his current level of treatment and are receiving a goodly amount of services through the state.

we know that he's autistic (or autastic as we like to say ) and don't have the need for an official diagnosis. i think we will pursue it when we find the need for more services than we are being given.
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Old 09-19-2008, 10:27 PM
 
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Originally Posted by FuzzyOne View Post

we know that he's autistic (or autastic as we like to say )
aw! I like that!!

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Old 09-19-2008, 10:40 PM
 
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For us, it is being able to access services and financial support because his dx. But I think that as a child gets older, that having a dx can actually be helpful in a way. It gives them some way to understand why they are different, to know that they are not alone, and to be able to belong to a larger group of people. I don't know if that makes sense and I could be wrong since my son is still young. But I've seen many adults realize that they have aspergers or another form of autism and actually be relieved by the diagnosis.

 
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Old 09-19-2008, 10:50 PM
 
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We decided to go the diagnosis route when we found out that once diagnosed, he would qualify for disability (SSI), medicaid, etc. This means he can get twice the speech therapy, twice the OT, and any other therapies his Dr. signs off on. The school system is required to provide a certain amount of ST and OT through his IEP but I like being able to get the max amount of services for him as possible. It is important to know that you don't have to sign for the school system to be able to bill medicaid when you go to the IEP meeting, if you do you will lose the right to have private services as well as the school provided services.

Getting on SSI means we will receive a certain amount of money each month to go toward helping our son. As soon as I get his diagnosis (had to wait 9 months to get an appt which is finally coming up in October) I will be able to use that money to pay for his YMCA membership (his OT recommended swimming), for his hippotherapy fee that insurance doesn't cover, for special toys and sensory equipment, even towards adaptive communication equipment. You also become eligible to apply for goverment and private community organization grants to go towards enrichment activities (art therapy, music lessons, respite care, etc) once you have that official diagnosis. That can be a big help if you are a family of limited means such as ours.

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Old 09-20-2008, 12:57 AM
 
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The diagnosis also finally silenced the criticism of relatives who had been sure that the whole problem was our parenting.
Boy, can I relate to that!
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Old 09-20-2008, 06:08 PM
 
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We decided to go the diagnosis route when we found out that once diagnosed, he would qualify for disability (SSI), medicaid, etc. This means he can get twice the speech therapy, twice the OT, and any other therapies his Dr. signs off on. The school system is required to provide a certain amount of ST and OT through his IEP but I like being able to get the max amount of services for him as possible. It is important to know that you don't have to sign for the school system to be able to bill medicaid when you go to the IEP meeting, if you do you will lose the right to have private services as well as the school provided services.

Getting on SSI means we will receive a certain amount of money each month to go toward helping our son. As soon as I get his diagnosis (had to wait 9 months to get an appt which is finally coming up in October) I will be able to use that money to pay for his YMCA membership (his OT recommended swimming), for his hippotherapy fee that insurance doesn't cover, for special toys and sensory equipment, even towards adaptive communication equipment. You also become eligible to apply for goverment and private community organization grants to go towards enrichment activities (art therapy, music lessons, respite care, etc) once you have that official diagnosis. That can be a big help if you are a family of limited means such as ours.
Okay, what if you don't have an official diagnosis or Medicaid? And what if it's still EI because your son is 2 years old?
The EI people said that I could only get services from one place - through them or going private. Does it vary by State? And which form is it that you do/don't sign? There were a million, and we signed them all.
We actually just got an info packet from Easter Seals, and I'm going to ask about that when the Dev Spec comes back on Tuesday.
This is so confusing!
How on Earth would Autism mean you can't get insurance later? That's stupid! It's not like autism = shortened life expectancy or greater risk for high blood pressure or anything like that. What gives?
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Old 09-20-2008, 06:30 PM
 
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Okay, what if you don't have an official diagnosis or Medicaid? And what if it's still EI because your son is 2 years old?
The EI people said that I could only get services from one place - through them or going private. Does it vary by State? And which form is it that you do/don't sign? There were a million, and we signed them all.
We actually just got an info packet from Easter Seals, and I'm going to ask about that when the Dev Spec comes back on Tuesday.
This is so confusing!
The form I'm talking about is one the school system will present to you and try to get you to sign when your child is 3. You will most likely see it at the first IEP meeting and they will act like "ok here is where you need to sign so that we can bill medicaid." There will be a "we consent" and a "we do not consent" box and a place for you to fill in his insurance info. Don't fill in the policy number and such info and check "we do not consent."

Since EI doesn't diagnose, right now the only services you can get are through them. But if you go ahead and schedule to see a dev. pediatrician or another specialist (we'll be going to the Emory University Autism Center) qualified to diagnose your son (it may take you until he's 3 to get an appt anyway so I definately suggest trying to go ahead and make one) then once you have the diagnosis it is like a golden ticket to more services. You can apply for SSI and medicaid, your pediatrician or the Dr. who diagnoses your son can write a prescription for more services, etc.

I wish I had known to go ahead and head straight for a developmental pediatrician or someone who could actually diagnose as soon as I suspected a problem rather than waste my time fooling around with EI. EI was very disappointing because of the fact that they don't diagnose and only provide minimal services.

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Old 09-21-2008, 05:37 AM
 
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I wish I had known to go ahead and head straight for a developmental pediatrician or someone who could actually diagnose as soon as I suspected a problem rather than waste my time fooling around with EI. EI was very disappointing because of the fact that they don't diagnose and only provide minimal services.
I'm sorry to hear that you went through the same thing we did with EI. We wasted months on EI when we should have gone straight to a developmental pediatrician for a dx. EI doesn't diagnose and they don't always tell you when they see red flags. I don't know if it's because they're hesitant to bring up something that is for most parents a bitter pill to swallow or if they do it so they can provide minimal services. Either way, it's the children that lose out.

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Old 09-21-2008, 01:40 PM
 
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Ok, this is totally shallow, but I just learned this yesterday, adn thought I would add it to the list of pros. A friend just went on vacation with her son who has AS. They were able to get special accomodations for him because of his dx. He didn't have to wait in lines at the Disney theme parks, and their room was in a quieter part of the hotel. It sounds silly, but when the line for a ride is an hour long and in a crowded space, well, you can just imagine what might happen. It is good to know that there are destinations like Disney that will help your SN child (and the rest of the family) enjoy their vacation.

Mama to 4 darlings. A ('03), O and K ('06), A ('09), and wife to M since 2002.
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Old 09-21-2008, 11:55 PM
 
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One of the best things about the diagnosis, and this came as a surprise, was that it opened up a new social world of mothers with ASD kids - a group of people who totally understood, and who didn't judge me. It was the first time I could laugh about shopping center incidents as we all compared stories. My stress levels since the dx have dropped significantly, and my son is also thriving now he has an aid at school.
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Old 09-28-2008, 08:05 AM
 
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