Next Asperger's question: Is it worth it to get diagnosed???

[Julie in MO]

Hi,

I'm filtering these questions as they plague me. THanks for being both patient and helpful! :)

 

There is a wonderful treatment facility in town (Thompson Center) that is stretched thin and has a tremendous waiting list. I'm told the evaluation process is grueling, draining, and expensive, but worth it if you need the services.

 

DD12 has some Asperger's traits, as far as I can tell from my own reading and comments from two teachers. If so, it's very mild. I do think it stunts her socially, but she's willing to try things I suggest and she has some good friends that I foster frequent social times with. As I've learned and changed my education strategy with her, she's done much better. I have a long way to go in understanding/helping her and I have many questions. She does sometimes frustrate easily and she struggles with some sensory integration issues (particularly shoes/clothes and food).

 

What do you think? Should I pursue a diagnosis or just plug along? I'm having a great deal of trouble even getting connected into the *system* even with my primary doctor's help. I've been calling/the doc's office has been calling and we've been put off. I totally understand that they are stretched too thin as the premium treatment facility in this state. I just wonder if it's a good use of my time to go down that path as opposed to just trying to learn new ways of helping her on my own?????

 

OH...and in re-reading that, I should say that I don't have an over-inflated sense of my abilites...I'm just frustrated in spendng time trying to get into a busy health care system and sensing that she's not in as great a need as many, am wondering where my limited abilities should be spent? OK...thoughts? And thanks in advance.

 

Blessings,

Julie

[HeidiD]

It depends on what your goals are. The label is mostly useful for defraying therapy expenses, because some are often at least partially covered by insurance.

 

If you have already recognized her strengths and weaknesses and are addressing them, it might not be worth bothering to pursue the official label. Also, if she only has certain "traits", she might prefer not to be labeled in the future. My dentist has traits, without a doubt, but that hasn't stopped her from leading an apparently well-balanced and successful life. :)

[8filltheheart]

I would look at the bigger picture and long range. (Can you tell where we are??)

 

If a diagnosis would allow for disability accommodations at the college level......definitely worth it. If a diagnosis would provide the option of state services as an adult......definitely worth it. Those things require proper documented tests, not just a drs opinion.

 

For example, our ds will probably never drive. He is extremely intelligent, but he is easily distracted. We are unwilling to take the chance that he might be distracted behind the wheel. The county has a van service for adults that qualify. It costs $6/1 way trip to any location w/in the county. We are investigating this as a way for him to get to and from either a job (which we are also working on) or to and from the CC.

 

When he was 12, the thought of him not being a completely independent, self-sufficient adult never crossed our mind. However, it is a daily reality now that he is dependent adult. I'm glad we had the testing done.

[Julie in MO]

and thanks to both of you. I think I was not seeing the bigger picture.

Blessings,

Julie

[Rhonda in TX]

One thing to consider... My DS has a diagnosis of Asperger's. A few years ago we were looking into private health insurance (employer insurance was very expensive) and they would not cover DS at all. I figured they wouldn't cover therapies, but they wouldn't cover him for even ordinary health insurance (and he's a very healthy child). We stayed with the company insurance because of that.

[NoPlaceLikeHome]

Healthcare reform will eventually prevent companies from denying to insure someone because of pre-existing conditions thank God. Currently this applies to children under 19 and eventually it will apply to everyone.

 

http://www.healthcare.gov/law/provisions/ChildrensPCIP/childrenspcip.html

[NoPlaceLikeHome]

As far as a diagnosis I think it depends on how impaired she is IMHO. DS has had borderline AS symptoms and we chose not to get a diagnosis since the doctor said if he did have it that it was mild and that the only recommendation was a social skills group of which there are none locally.

 

Instead we have been doing every activity known to man:D Also, we have use videos from Model Me Kids:

 

http://www.modelmekids.com/

 

I also think these look interesting:

 

http://www.amazon.com/gp/product/1572246103/ref=ord_cart_shr?ie=UTF8&m=ATVPDKIKX0DER

 

http://www.amazon.com/gp/product/1575420244/ref=ord_cart_shr?ie=UTF8&m=A18OZMH8UQINVM

 

Lastly, for what it is worth, my dh and I were socially awkward which can be a normal variation IMHO.

[Julie in MO]

I didn't know something like this existed (the Model Me DVD's). Thanks for sharing!

Blessings,

Julie

[Guest]

Healthcare reform will eventually prevent companies from denying to insure someone because of pre-existing conditions thank God. Currently this applies to children under 19 and eventually it will apply to everyone.

 

http://www.healthcare.gov/law/provisions/ChildrensPCIP/childrenspcip.html

 

Perhaps, but I think the recent election results make that a bit more iffy. It is a declared goal of the Republicans to undo the health care legislation that just passed.

[Spellbound]

We decided to go ahead and do the testing. We were trying to do a lot of the work with DS ourselves but when we needed help, we got a lot of 'we don't know what to do for this kind of person'. We felt we needed the access to the resources that came with the diagnosis. We are still in the process of finding if there is a diagnosis. In fact, just had the intake appointment this week. 2-3 months before the psychologist evaluation. I'm grateful to be homeschooling but the end goal is for him to be self sufficient as an adult, or as much as possible. I think that is going to take a lot of support from outside.

 

We went back and forth a lot as well, trying to make the decision. Many times questioning whether we needed to or not. He needs social skills groups for sure but also help with anxiety and sensory issues.

 

My thoughts are with you-

[HeidiD]

Healthcare reform will eventually prevent companies from denying to insure someone because of pre-existing conditions thank God. Currently this applies to children under 19 and eventually it will apply to everyone.

 

 

 

People with this diagnosis are highly unprofitable risks for insurance companies because of the comorbid conditions that often accompany it, combined with the current trend towards overdiagnosis in order to gain coverage for therapies, etc. This is definitely an important consideration when weighing the pros and cons of a formal diagnosis. (My daughter, for example, has required psychiatric medications for the past decade). None of us can predict the future, but obviously the potential exists for insurance companies to refuse to provide coverage (as Rhonda has already experienced). Fortunately, an Asperger's diagnosis isn't required for OT or other therapies.

 

If insurance companies are required to cover every unprofitable risk, they'll ultimately go out of business and then we'll all be required to submit to government medical mandates. As someone who was formerly dependent on military medicine (a microcosm of substandard and rationed government healthcare at several duty stations, particularly at the larger bases) I think our kids will be even worse off if that happens. :tongue_smilie:

[Verity]

What do you think? Should I pursue a diagnosis or just plug along? I'm having a great deal of trouble even getting connected into the *system* even with my primary doctor's help. I've been calling/the doc's office has been calling and we've been put off. I totally understand that they are stretched too thin as the premium treatment facility in this state. I just wonder if it's a good use of my time to go down that path as opposed to just trying to learn new ways of helping her on my own?????

 

OH...and in re-reading that, I should say that I don't have an over-inflated sense of my abilites...I'm just frustrated in spendng time trying to get into a busy health care system and sensing that she's not in as great a need as many, am wondering where my limited abilities should be spent? OK...thoughts? And thanks in advance.

 

Blessings,

Julie

 

We just got my 12 year old son an official Asperger's diagnosis last week so I thought I would pipe up. When my son was first evaluated for autism at age 6 (his public school kindy teacher saw some warning signs) the Dr dx'd ADHD only - even though I had done my research and argued at the time for an Asperger's diagnosis. In the following years my son took medication during school days for attention (and this seems to cause some changes in his motor skills and anxiety levels as well) and functioned pretty well. High IQ and reading skills compensated for a lot in those grades. In 3rd grade the social problems really escalated as the other kids started maturing and in 4th grade teasing and organizing (executive functioning) skills became major issues. I brought him home at that point because an ADHD dx alone wouldn't qualify him for any kind of IEP. His high intelligence masked other academic problems in the younger grades but as self-regulating and organizing skills became more needed in the older grades he was starting to fall apart.

 

I found a great local non-profit resource for social skills groups and he's been doing great with those. After alot of soul searching I finally decided to go ahead and get a full evaluation for Asperger's. My primary reasons include (but are not limited to): 1) getting accomodations for college classes/standardized tests 2) he needs to be excluded from any potential military requirements (such as a draft should we go to war)

3) If something should happen to dh or I and my mom had to raise the kids this would help her with getting an IEP and assistance 4) access to other services such as equine therapy and so forth.

 

We have very poor private insurance and only one income. The center who did our eval scaled the cost based on our income and family. There was a long wait (about nine months) to get the evaluation but I'm very satisfied with the services we received and how we were treated.

 

I got the official results last Thursday so I'm still processing IT a bit. I've known inside that my son had some kind of autism for six years. Now I feel justified in the argument I had with the dr when he denied the autism. I also feel like I can be sure now that I'm not the "crazy" one or imagining things... it sounds silly but with three boys and all three with a variety of developmental issues sometimes I wonder if it's just me, not them? This validates that, yes, I do have a harder time than parents of all neurotypical kids - I'm not making things up.

 

Since we got our evaluation privately I also own that eval and the results and we aren't obligated to share the information with anyone unless we chose to do so; our options should still be open.

 

Good luck with making your decision!

[Julie in MO]

During these weeks of waiting for a call back from the evaluation/treatment facility, I have "waffled" back and forth about moving in that direction. I have prayed about it and finally feel at peace. Today (on my birthday!) the intake coordinator called me. She was so kind and helpful. I told her my concerns and she said that about 50% of the kids they see don't every get a diagnosis (it's an emerging field and some kids don't fit the mold for what doctors know right now). She said at the very least, they would help evaluate her learning style and give me support to help her along with any therapies that might be of benefit. The waiting list is six months long, so I have plenty of time to learn, watch, and pray, anyway.

 

Thanks for your comments, everyone. I feel very supported by you friendly folks!

 

Blessings,

Julie