Services/Treatment for ds12 with ASD?

[Night Elf]

My son was diagnosed with Aspergers at age 9. As he's gotten older, he's more calm but has also become even more of a loner than ever. He spends hours in his room doing various things: lego building, reading, surfing the 'net, video games, listening to his ipod. He doesn't mind his sister joining him and they get along very well. He listens and follows direction very well with no whining. He'll do his schoolwork or any chore we ask him to do.

 

His only social opportunity is hanging out with his best friend. Unfortunately, that friend's family is extremely busy. We're lucky to see them once every two months. My son has already done the martial arts thing when he was younger. He earned his Black Belt. He's too old for homeschool park days. He's tried the Boy Scout thing and it was a huge flop, which is sad since my DH is an Eagle Scout. He's just too different to connect with any other boys. We don't have a great many homeschool classes in our area but whenever he's attended, there really isn't social time anyway so it's purely academic. He doesn't need outside academic.

 

I'm a little worried about his physical condition. He's not comfortable doing any exercise. We get him to walk on the treadmill but he walks really slowly. It's like he hasn't gotten used to his large feet yet, which are now the same size as my DH's feet. He hates going outside because he fears any flying insect, even house flies and ladybugs.

 

We have Kaiser insurance and practically have to beg for any type of service. They are very reluctant to offer anything. It's always a 'wait and see' approach. I've been toying with the idea of having him referred to an occupational therapist, but am unsure of what to say to get the referral. What services might he benefit from? I know they don't have a social group because I already asked. In fact, the behavioral health dept. seemed to not quite understand the need for one! :confused: I paid $300 for an evaluation at an autism center but they were zero help. They didn't spend more than 5 mins. with him, but instead sat with me and asked me a gazillion questions from which they drew up the written evaluation. The report was obviously a standard form because both Jeffrey's name and another boy's name were in the report. They were in the process of building a social group and I was put on the waiting list but no one contacted me. I didn't bother calling them back because of my unsatisfactory experiences with them.

 

Sorry to write so much. I wanted to give a thorough background. What, if any, services could I seek for him?

[AlmiraGulch]

Beth,

 

This is not the response you're looking for because I don't have any solutions. I do, however, have the exact same problem as you with my 12 year old dd. She does not have a formal Asperger's diagnosis, but she is going for an evaluation on 6/8 (it's a 4 hour eval, after a 1 hour intake appointment with just me, so I was shocked to read that they only spent 5 minutes with your son!).

 

Your son's issues seem to be nearly identical to my daughters....a complete loner (and she doesn't even have a best friend...she has no friends), spends an inordinant amount of time alone, no exercise, irrationally afraid of flying insects, etc. She also has a fear of bad tastes, so tries nothing new to eat and has a horrible diet. When I say fear, I mean she is terrified that something will taste bad and she screams and cries like someone is killing her. She has the same fear of discomfort in general. When she went for vaccinations last year, it took two nurses and me physically restraining her, and she still screamed like we were torturing her. Meanwhile, her then 4-year old sister was telling her it really isn't all that bad...

 

At any rate, I'm telling you all of this because I don't want you to think you're alone. In fact, as much as I feel for you and the issues you're having with your son, I took comfort from you posting because people who don't have it, don't understand.

 

Thanks for taking the time to post, and I do hope you find some answers here.

 

Quincy

[Night Elf]

Thanks Quincy,

 

It's good to hear I'm not alone. I just can't find any answers anywhere! It's most frustrating. I called and set up an appt. at behavioral health with Kaiser again. Since we haven't been seen since 2006, they told me I needed another evaluation appt. We'll see how it goes.

[Niffercoo]

Thanks Quincy,

 

It's good to hear I'm not alone. I just can't find any answers anywhere! It's most frustrating. I called and set up an appt. at behavioral health with Kaiser again. Since we haven't been seen since 2006, they told me I needed another evaluation appt. We'll see how it goes.

 

 

I just don't think you're going to get much help through Kaiser. We had Kaiser for all those years when the Dr. (at the office in Duluth on Steve Reynolds Blvd.) would just tell me everything was fine. I made 3 specific appointments to talk about issues at home and at school (when Austin was in public school K), and was just blown off that he was young, immature, etc. The first pediatrician who saw us after we left Kaiser immediately gave me referrals for both of the kids, and within a year they each had diagnoses.

 

Another local friend of mine has a young nonverbal boy whom the schools have identified to be on the spectrum, but Kaiser refuses to pay for any sort of speech or OT.

 

I think you're going to have to go out of pocket for the answers you're wanting. We put ours on a credit card and hope to have it paid off sometime next year (4 years later). Which autism center did you go to? I've never heard of one around here that was only $300. I can recommend Developmental Pediatric Specialists in Atlanta, and there is the Marcus Institute, of course but they are very expensive and the waiting list is long.

 

It's hard at this age because activities and sports and scouts in our area tend to start when they are little bitty. Austin's been blessed with a talent for baseball, and a husband who is willing and able to coach. But we're coming to the end of his being able to participate because he's a small guy. I'm not sure what we'll do next.

 

He's going to Spectrum camp this summer... the middle school tech camp. I've never sent him to something like this before, with other boys on the spectrum, but he's just so different than other boys that it's so hard for him to be in other sorts of clubs. Perhaps something like that would be good for Jeffrey? Spectrum also offers social groups for middle schoolers. They meet off I-85 in Suwanee.

 

Here's the link for the camps: http://www.atl-spectrum.com/summercamp.html

 

Here's the link for the social group (scroll down to the bottom of the page): http://www.atl-spectrum.com/socialgroupsactivities.html

 

I hope some of this helps. It's hard even with a child who WANTS to get out and do things. This is a hard age when you're different.

[AlmiraGulch]

Beth,

 

Are you in the Atlanta area, too? I found a social skills group fto send my daughter to, but it's in Cobb County. If you're in this area and you're at all interested, please let me know and I'll PM you the information. Even if Cobb is inconvenient for you, maybe this practice could offer a referral.

 

Quincy

[Night Elf]

I'm north of atlanta, about an hour away from Cobb Co.

 

The place I got the $300 evaluation was The North Georgia Autism Center. Their website looks good so I don't know why I didn't get a decent evaluation. I remember being told they were normally $400 but she would do it for $300. I just felt like they were probably more interested in lower functioning autistic children and that maybe my son was too old or something.

 

I was googling for services and found The Center for Psychological and Educational Assessment. A full assessment that includes psychological and language is $1600. Egads!! It's so hard to think about paying that much when we've had 2 evaluations (Kaiser and the one mentioned above) and zero satisfaction. What if this turns out to be another dud?

 

I've looked at the Marcus Autism Center website and can't find anything that looks like it would be helpful. It seems like everything is for kids with severe problems. Jeffrey doesn't have any severe issues.

 

Then there's the fact that my DH doesn't think Jeffrey has a problem. He keeps saying he sees himself in Jeffrey at the same age. He acknowledges Jeffrey's ASD but doesn't think there is anything we can do about it. As long as Jeffrey continues getting really good grades, my DH feels everything is ok. My DH also says that Jeffrey can't do certain things because I've always made everything too easy for him and didn't make him practice. I'm blamed for the fact that Jeffrey can't tie laces and can't use scissors well. When he was little, Jeffrey hated to color, paint, and cut things out. He never did develop an interest in them. DH thinks I should have forced him. I hate the idea of forcing a child to color or paint. How silly is that??

[chiguirre]

Hi guys,

 

I can thoroughly relate to the uselessness of doctors to steer you in the right direction for social skills groups and appropriate activities. I definitely know more about what's available than our pediatric neurologist. He just doesn't have much of a clue about private schools, let alone good places for spectrum kids to participate. I've gotten most of my best references from my oldest's school because they offer community outreach to higher functioning kids and a social skills group. Do you have any private ABA places in Atlanta? Even if you don't fit what they offer they might be able to steer you to the right place. In Houston, there's also a chapter of FEAT that sometimes has good information. I've also been lucky with my local special needs parents' group. It's geared more to teenagers, but they post opportunities for younger kids sometimes.

[AlmiraGulch]

I'm north of atlanta, about an hour away from Cobb Co.

 

The place I got the $300 evaluation was The North Georgia Autism Center. Their website looks good so I don't know why I didn't get a decent evaluation. I remember being told they were normally $400 but she would do it for $300. I just felt like they were probably more interested in lower functioning autistic children and that maybe my son was too old or something.

 

I was googling for services and found The Center for Psychological and Educational Assessment. A full assessment that includes psychological and language is $1600. Egads!! It's so hard to think about paying that much when we've had 2 evaluations (Kaiser and the one mentioned above) and zero satisfaction. What if this turns out to be another dud?

 

I've looked at the Marcus Autism Center website and can't find anything that looks like it would be helpful. It seems like everything is for kids with severe problems. Jeffrey doesn't have any severe issues.

 

Then there's the fact that my DH doesn't think Jeffrey has a problem. He keeps saying he sees himself in Jeffrey at the same age. He acknowledges Jeffrey's ASD but doesn't think there is anything we can do about it. As long as Jeffrey continues getting really good grades, my DH feels everything is ok. My DH also says that Jeffrey can't do certain things because I've always made everything too easy for him and didn't make him practice. I'm blamed for the fact that Jeffrey can't tie laces and can't use scissors well. When he was little, Jeffrey hated to color, paint, and cut things out. He never did develop an interest in them. DH thinks I should have forced him. I hate the idea of forcing a child to color or paint. How silly is that??

 

I'll let you know about tmy experience with the Center for Psychological and Educational Assessment, because my daughter has an evaluation scheduled there on 6/8. And yes, it's very expensive, but I don't know what else to do. That's also the place that has the Social Skills class I mentioned.

[AlmiraGulch]

Hi guys,

 

I can thoroughly relate to the uselessness of doctors to steer you in the right direction for social skills groups and appropriate activities. I definitely know more about what's available than our pediatric neurologist. He just doesn't have much of a clue about private schools, let alone good places for spectrum kids to participate. I've gotten most of my best references from my oldest's school because they offer community outreach to higher functioning kids and a social skills group. Do you have any private ABA places in Atlanta? Even if you don't fit what they offer they might be able to steer you to the right place. In Houston, there's also a chapter of FEAT that sometimes has good information. I've also been lucky with my local special needs parents' group. It's geared more to teenagers, but they post opportunities for younger kids sometimes.

 

Can you tell me what ABA is? I'm not familiar with that term.

[chiguirre]

Applied Behavioral Analysis. It's the best documented way to treat children with asds including Asperger's. A person who is certified to design and oversee a program is a BCBA (Board Certified Behavior Analyst). Here's the link to ds's school's website to give you an idea of what you might be looking for:

 

http://www.includingkids.org/index.htm

Edited May 7, 2009 by chiguirre
clarification

[AlmiraGulch]

Applied Behavioral Analysis. It's the best documented way to treat children with asds including Asperger's. A person who is certified to design and oversee a program is a BCBA (Board Certified Behavior Analyst). Here's the link to ds's school's website to give you an idea of what you might be looking for:

 

http://www.includingkids.org/index.htm

 

Thanks!

[Mom0012]

From your description, it does sound like your son would benefit from social skills classes and occupational therapy. My son has done both of these things and I was surprised at how much even the OT helped him socially.

 

Our insurance did partially pay for both of these things, but I don't know what you could expect from Kaiser. Even with the help from the insurance, it was still expensive. Once my son had a few months of OT, I worked something out with the therapist where I did a list of exercises at home with my son and then just brought him to see her once a month.

 

I have found it more effective to spend our money on therapies rather than evaluations. I always had high hopes going into an evaluation, but usually came out with nothing helpful, just feeling more confused than ever.

 

You can't know if a therapy is really going to help, so sometimes you just have to try it to see. I think it is best to set a time limit ahead of time of how long you are willing to continue with the therapy without seeing results. It is very easy to get sucked into doing something for a long time that isn't helping because a therapist wants to continue working with your child.

 

For example, when my son did OT, I saw changes in him within a couple of weeks, so I knew it was right for him. I continued to see changes for a number of months. After about 6 months, there were no more improvements. I had no problem with continuing for another 6 months, but after that I wanted to just continue with the exercises at home and stop seeing the therapist. She really pressured me to continue, so I did, but in hindsight, we should have stopped when I felt we were no longer making progress so I could put my resources elsewhere. I have never had a therapist want to end therapy. I have always had to make the decision that it is time.

 

It is really a tough call to decide what therapies to try when they are all so expensive and there are no guarantees with any of them. It can be completely overwhelming, so maybe just try to focus on one thing and when that is done, move on to the next.

 

Lisa