Reasons to get an official Aspergers diagnosis?

[Renee in NC]

I have now had 2 different psychiatrists recommend that my ds be evaluated at TEACCH in Chapel Hill. The first time I just blew it off because I didn't see a reason for doing it (he's 13.)

 

The second recommendation was just this morning and no, ds did not hear it. However, it was interesting as the psych was asking certain questions that he would answer them and the answers were quite eye opening for me.

 

Tonight, we were watching a show on Animal Planet where Temple Grandin was talking about her life and the things she experienced and how she sees things. The ds in question said, "Mama, am I autistic?" I didn't know how to answer, so I asked, "Why do you ask?" He replied, "Because I am a lot like her. We can do the same things and I have a lot of the same problems.":001_huh:

 

He's already on meds that help with the anxiety. We're getting ready to try Strattera for the attention issues. He is going to get counseling for the anxiety/OCD issues.

 

So, with all that said, is there a reason to go for the evaluation? The psych said he could get services through the schools (if he attends next year.) She seemed to think that OT and ST would help, as well as some social skills therapy. I don't know how realistic that is, but I don't want to limit his possibilities either.

[PeterPan]

Well while you're waiting for someone more experienced to answer, could I flip it and ask why you WOULDN'T get him evaluated? I'm not trying to put you on the spot or anything, but do you have any reasons? Seems to me a question like that ought to be answered and shouldn't be something he's left wondering about. If the price point of that place is out of reach, maybe there's a cheaper evaluation option?

[pdalley]

I like the TEACCH approach. All of mine have been evaluated by TEACCH and they have always helped me if problems have cropped up. They speak a language I can understand in explaining why my boys think the way they do.

 

I really think you could benefit from a TEACCH eval but that's based on my experience with them. I like the TEACCH approach - especially when it comes to schoolwork and the like and the way they see autism.

[Renee in NC]

Well while you're waiting for someone more experienced to answer, could I flip it and ask why you WOULDN'T get him evaluated? I'm not trying to put you on the spot or anything, but do you have any reasons? Seems to me a question like that ought to be answered and shouldn't be something he's left wondering about. If the price point of that place is out of reach, maybe there's a cheaper evaluation option?

 

It isn't the money - I don't think it will cost us anything.

 

I don't tend to go for evaluations "just because." To me, diagnoses are only necessary for accessing services that will help the child in question. I am not going to have him labeled for the label's sake. Having an official diagnosis isn't going to change his reality - it is what it is, KWIM?

 

If it would get him services that could help him, then I would. If it simply gives a name to his issues, it isn't worth it. He isn't one that takes kindly to questions, tests, etc. If it won't give me information that will help him, then why jump through all the hoops?

[Renee in NC]

I like the TEACCH approach. All of mine have been evaluated by TEACCH and they have always helped me if problems have cropped up. They speak a language I can understand in explaining why my boys think the way they do.

 

I really think you could benefit from a TEACCH eval but that's based on my experience with them. I like the TEACCH approach - especially when it comes to schoolwork and the like and the way they see autism.

 

Thank you - that is helpful. I have heard nothing but good about TEACCH and it sounds like it could be a good resource. My ds is almost 14, though - 4 years from adulthood (he insists he is moving out the moment he turns 18.:tongue_smilie:) He doesn't take others opinions AT ALL - he refuses to see the perspective of others (oh, wait....:lol:) That makes me think that therapy might not be helpful.

 

Will they re-do his IQ testing? That would he a big plus in favor of getting it done. The first evaluation was ridiculous and inaccurate. I was planning on paying the $1500 to have it re-done at some point in the future. If they will do a better job than FL Tech I will be happy.

 

I'm open to doing it, but getting him there will be very difficult. The neuropsych was bad enough - at one point he refused to do anything. He throws testing off all the time. At the neuropsych they gave him a vocabulary test and he got bored with it, so he started randomly picking answers. The same thing happened with the IQ/achievement testing, I believe. He didn't want to be there, so he didn't put forth any effort.

[pdalley]

Thank you - that is helpful. I have heard nothing but good about TEACCH and it sounds like it could be a good resource. My ds is almost 14, though - 4 years from adulthood (he insists he is moving out the moment he turns 18.:tongue_smilie:) He doesn't take others opinions AT ALL - he refuses to see the perspective of others (oh, wait....:lol:) That makes me think that therapy might not be helpful.

 

Will they re-do his IQ testing? That would he a big plus in favor of getting it done. The first evaluation was ridiculous and inaccurate. I was planning on paying the $1500 to have it re-done at some point in the future. If they will do a better job than FL Tech I will be happy.

 

I'm open to doing it, but getting him there will be very difficult. The neuropsych was bad enough - at one point he refused to do anything. He throws testing off all the time. At the neuropsych they gave him a vocabulary test and he got bored with it, so he started randomly picking answers. The same thing happened with the IQ/achievement testing, I believe. He didn't want to be there, so he didn't put forth any effort.

 

 

Hmmm, you can probably call and they will tell you what exactly they will do. All mine were younger when they had their evals so they'll look different for him. I can't remember all of the tests they do. But if he has perspective issues they do work with that well.

 

They do have support services up through adults and especially in your area since they are based at UNCCH. If they do give him the diagnosis he will be eligible for their social groups and support groups.

 

It's not a typical evaluation - at least my boys didn't think so. They love the place. They always tell me they have fun there. I took several of their classes on Structured Teaching and I had fun. LOL

 

Sadly funding was cut and I can't shell out 125 for social groups this time. I hope I can next year. :(

[momtotkbb]

Do you plan on him going to college? Do you plan for him to take any national standardized test? Would anything from Vocational Rehab help him when he's a young adult? Do you plan for him to attend a public school in his future? If you answer 'yes' to any of those questions then an evaluation could be of tremendous benefit to him. Based upon the evaluation's findings and recommendations it could mean accommodations for his standardized testing (I know my ds w/ ADHD/LD just received notification that he has been approved for accommodation on the ACT based upon his dx and letter showing what accommodations we provide in hsing). It could mean assistance both at the public school level and the college level. And if could mean he qualifies for things such as SSI, Voc Rehab funding for training either through college or skills training.

[TechWife]

TMy ds is almost 14, though - 4 years from adulthood (he insists he is moving out the moment he turns 18.:tongue_smilie:)

 

One of the reasons we had an evaluation done last summer was to begin laying a paper trail. Hopefully he will be able to get extended time on the SAT and be able to use a computer for the writing portion. Those are two common accommodations that would be beneficial for him. He may need another evaluation before college, but I think the paper trail will only help there. Our developmental pediatrician said it is very difficult to justify requesting accommodations after a student has entered college if there isn't a paper trail. Two college accommodations that have caught my eye are private dorm rooms and extended test time.

[cathmom]

I would get it so he can have an answer to his question. :grouphug:

[Murmer]

I would look at services that would be more available with the diagnosis...in my state a child on the spectrum gets free medicaid regardless of parent income, they also get up to 35,000 in behavior help via private insurance. In addition they qualify for social groups outside of school, a special group that works only with children on the spectrum to help them outside of school. The diagnosis opens doors that otherwise wouldn't be...mind you this is only in the state I live in but I would check your state to see if they have similar options only available to those with the "right" diagnosis.

[DawnM]

Just so you know, TEACCH has lost some of their state funding and will begin charging in January. We had our initial consultation in September and are on the waiting list (wait list is over 9 months!)

 

They didn't know what they would be charging when I spoke to them at the consultation. They were waiting for final word on what insurance they would accept, etc....I should call now and see what they say. If it is going to cost about the same as going to a private facility, we may just go private.

 

They also said their group sessions will be about $100 per session.....we will not be doing that.

 

Just to let you know, a friend's daughter got accepted to Duke. Her diagnosis was done at age 16. Duke would not accept it and give her any accommodations because they said they needed her to have been tested and diagnosed in Jr. High. Now, Duke is private and they can do whatever they want, but it was a blow to them as she really needed a private dorm room, etc....

 

My son is 13, almost 14. I am really hoping we can get him diagnosed within the next 18 months. Not because he wants to go to Duke, but because I really need some better tools at home to help him through high school.

 

Dawn

[EKS]

Just a heads up about autism spectrum diagnoses. I don't know if it is still the case, but several years ago having an autism/Asperger's/PDD-NOS diagnosis made getting health insurance difficult. I believe it also automatically excludes a kid from military service.

[PrincessAriel]

nt

[Renee in NC]

Thanks for all the replies. He asked this morning if he could get tested, so I told him that we would do it. I printed the forms and I will get them out this week so he can get on the waiting list.

 

Answering various posts:

 

He is on Medicaid, so it still might not cost anything, even with the funding cuts. Even if we have to pay some, it might be okay - I had planned to spend $1500 on the add'l psych testing with the neuropsych, so it would just go to TEACCH instead.

 

I do want him to get accommodations on the SAT/ACT, but I think we can get some with the results we already have (time and a half, for example.) I am not sure he will go to a regular 4-year college anyway, so it may not even be an option.

 

The military is *not* an option, ever. The thought made me :lol:. My dh was Army and he *knows* ds could never do it. As for the health insurance - that could be an issue in the future. It is something to keep in mind. At least we could keep him on whatever group policy we have until he is 26.

 

He is likely to go to ps next year, so an additional diagnosis on top of what we have may be good. In addition, when researching school districts I'll add this to my list of questions.

 

DawnM, what private facilities do you know of that are good? Since he currently has Medicaid, that may be the way to go. His neuropsych wouldn't diagnosis Asperger's, but referred us to TEACCH instead. His new psychiatrist also said we need to go to TEACCH.

 

MomofC&A, the problems are *definitely* getting worse as he gets older, what made him "quirky" and "odd" when he was young is now more disabling. It also is *very* hard on the rest of the family.

 

I requested 2 Temple Grandin books and the movie (he wants to see it) from the library - if nothing else, it may give me ideas on how to deal with some of the issues.

 

Thanks again!

[DawnM]

There are two places that have been recommended to me. One is in Concord and I will have to see if I can find the info.

 

The other has two locations in Charlotte and they may have something up in the Raleigh area.

 

http://www.childandfamilydevelopment.com/

 

 

I also found this:

 

http://therapists.psychologytoday.com/rms/prof_results.php?city=Charlotte&county=Mecklenburg&state=NC&s6=12

[DawnM]

I will add that I am waiting to hear how much TEACCH will charge. If it is similar to private, we will go private. The private place comes highly recommended not only by my doctor and some friends at our previous church, but it is the place recommended by the Fletcher private school here where, if you have an extra $18K sitting around, you can send your child who has special academic needs.

 

Dawn

[TechWife]

Renee,

 

Do you still have the info. on the dr. we used in Raleigh? Let me know if you need me to resend it.

[Renee in NC]

Renee,

 

Do you still have the info. on the dr. we used in Raleigh? Let me know if you need me to resend it.

 

Please resend it - I cleaned out my pm box recently and it isn't there. Thanks!

[Crimson Wife]

Just a heads up about autism spectrum diagnoses. I don't know if it is still the case, but several years ago having an autism/Asperger's/PDD-NOS diagnosis made getting health insurance difficult.

 

Not to make this into a political discussion, but one of the things Obamacare is claimed to be doing is getting rid of pre-existing condition exclusions. Who knows what will happen after 2012, but that's how things stand right now.

[Finnella]

I think a diagnosis can be helpful in several areas. First, it can help him understand himself better. Second, it may help with accommodation issues as others have mentioned. Incidentally, the evaluation to make my son's diagnosis official also turned up 3 LDs. So you may learn other valuable bits of information.

 

As for social skills, early intervention is best. That's another good reason to find out.

 

I used to work in the insurance industry, so I understand the concerns about adding diagnoses to your child's medical history. Even without reform, it's going to be more of a problem if he's trying to buy an individual policy, or, sometimes, in a small group. While there is some risk (though who knows what the rules will be when he's an adult), I think the payoffs are worth it.

[gardenmom5]

. . . So, with all that said, is there a reason to go for the evaluation? The psych said he could get services through the schools (if he attends next year.) She seemed to think that OT and ST would help, as well as some social skills therapy. I don't know how realistic that is, but I don't want to limit his possibilities either.

 

you should be able to get services even if you are doing mostly homeschooling. services would still be at the school. having a professional medical team doing the evaluations is good because they are looking at what the child needs vs some school districts doing evaluations looking at finding nothing wrong so they don't have to pay for services. school districts can provide services that support academics. I pursued a diagnosis for my son so he could get services through the school. the school has done their own evaluations, and we will meet up in january to discuss what services they have available. I also have the medical schools results and what services they want, which carry more weight.

 

when I was in school, ld's and aspergers were pretty much unrecognized - especially in girls. It would have made a huge difference in my self-esteem to have known I wasn't stupid, just different from how teachers taught. I was fully aware I didn't understand/relate-to other kids.

[gardenmom5]

Not to make this into a political discussion, but one of the things Obamacare is claimed to be doing is getting rid of pre-existing condition exclusions. Who knows what will happen after 2012, but that's how things stand right now.

 

My husband is in the medical insurance business. what obamacare has done is make two) six-week windows where NT children can change insurance, and the rest of the year they can't get insurance. at. all. (except under VERY specific circumstances. e.g. parent changing jobs and beginning a family group policy.) Most insurnace companies do not cover ASD services anyway. (except Microsoft, self-insured, - wonderful coverage for ASD services. because so many computer geeks have ASD kids.)

[Renee in NC]

you should be able to get services even if you are doing mostly homeschooling. services would still be at the school. having a professional medical team doing the evaluations is good because they are looking at what the child needs vs some school districts doing evaluations looking at finding nothing wrong so they don't have to pay for services. school districts can provide services that support academics. I pursued a diagnosis for my son so he could get services through the school. the school has done their own evaluations, and we will meet up in january to discuss what services they have available. I also have the medical schools results and what services they want, which carry more weight.

 

when I was in school, ld's and aspergers were pretty much unrecognized - especially in girls. It would have made a huge difference in my self-esteem to have known I wasn't stupid, just different from how teachers taught. I was fully aware I didn't understand/relate-to other kids.

 

In NC, he could only get speech. The schools here are not required to provide anything else. It is state by state - some states offer more.