Should I believe this Aspergers diagnosis?

[lulubelle]

My ds10 is a very difficult kid and has been since 2 years of age. I have done tons of research on what he has and the best I can come up with has been Aspergers, ADHD, and Dyspraxia. A true mix of all 3!

 

We had him neuropsyched by a person who specializes in Aspergers. He found that he did not qualify for a full diagnosis and felt that since we homeschooled an ADHD diagnosis was not necessary, though if he were in school he said he would have given an ADHD diagnosis. He didn't seem strong about the ADHD, which is such a tricky thing to test for any way. So, I was really upset that I went through so much to have him evaluated and I did not get a diagnosis. Basically, he said your son is quirky and geeky with some traits of Aspergers. He sent me off with information about Executive Function.

 

So, almost three years later, my son has been exhibiting anxiety, meltdowns, and his usual difficult behavior. We started seeing an excellent therapist that helped with some of the issues, but always wondering if he should be on medication.

 

I made an appointment with a Behavioral Pediatrician. We did not hit it off with her. She was late, unprepared, and does not have a high view of homeschooling. We moved forward with her anyway and she ends up seeing my ds for a total of one hour over two visits. She did a couple of Aspergers assessments with him, I think mostly because he did not give much eye contact to her during the first visit. My husband and I saw her last night and she tells us he has Aspergers and she does not recommend medication and we should place him in school where he can get the services he needs. She also tells us that he is probably bored at home and we can't challenge him enough!

 

This is a boy that is very intelligent, but struggles with learning!!! How does she get off telling us that we can't challenge him enough! She has no idea what we do!

 

I verbally told her and wrote down that we had been seeing a therapist with ds. I assumed that it would have been a logical step for her to contact the therapist. It's not like she had any information from teachers or anything. She did not contact the therapist. She didn't even remember anything about the therapist at the meeting last night!

 

In one respect, I'm glad he has a diagnosis, but this lady was not someone we liked. The same tests were administered by the neuropsych guy and he had completely different results. My husband is very skeptical, and so am I.

 

Maybe it doesn't matter at all. We may just use the diagnosis to get ds into some speech therapy, maybe a social group, and possible physical therapy - which he could all use!

 

It just seems strange to me that a doctor can be so subjective and rude! I know I shouldn't be surprised.

 

I wish it weren't so hard! Sorry, just more of a rant!

[Dandelion]

Maybe it doesn't matter at all. We may just use the diagnosis to get ds into some speech therapy, maybe a social group, and possible physical therapy - which he could all use!

 

 

I think that's a healthy perspective to take. IMO a diagnosis is really only relevant in relation to the services/treatment/support it helps you obtain and the understanding it gives you as parents. Beyond that, it doesn't really matter. If the Asperger's diagnosis your son received helps him access needed therapies, then it's a positive thing.

 

I'm sorry the Behavioral Pediatrician was so rude and unprofessional. All the best to you and your son as you figure out next steps. :grouphug:

[Erin]

I agree. The only reason a child needs any sort of a label is for further resources. You have the resources you need in place and because you homeschool there's no IEP. I'd just go with what you have. :)

[wapiti]

"Bright but struggles with learning" could well mean twice-exceptional (2e), but it does not sound as though actual, specific problems have been identified yet (e.g, is it attention/executive function or is it some form of processing issue, and if it's a processing issue, which one(s)?). It sounds like all stones have not been unturned. Did they do IQ testing? How did it turn out? I would want the IQ testing before considering medication for ADHD. What is your take on an ADHD diagnosis?

 

Have you considered an OT eval for SPD?

 

Is there an anxiety issue? Many med choices for ADHD may be contraindicated if anxiety is present.

 

If the Aspergers expert did not feel he qualified for a full diagnosis, I'd tend to believe that expert over the experience with the behavioral ped that you have described. Is the diagnosis really necessary to get the services you're looking for (you have to do what you have to do, of course)? What about speech - are you looking for services regarding language processing?

 

I'm sorry I'm just raising more questions... Have you read the Eides' "The Mislabeled Child"?

[Erin]

If you're looking at medicating, you do need all relevant labels. But if not, what's the purpose? Will it somehow change the way you educate or parent him?

 

My DS is probably gifted and almost certainly ADD. But we don't have labels for either because it won't change the way I educate him and we aren't exploring meds yet...

[MamaSheep]

The diagnosis of Asperger's is very subjective by nature since it's all based on people's subjective evaluation of behavior, and not on genetic tests, or blood tests, or any other sort of objective laboratory tests. One thing I noticed when ds was being diagnosed was that different people rated the severity of his symptoms quite differently, and ds's symptoms shift somewhat in kind and intensity from one day (or hour) to another anyway. That might be a factor in your son's diagnosis (or not).

 

There isn't any medication for Asperger's. They do sometimes treat symptoms, like anxiety or hyperactivity, with meds, but you don't need an Apserger's diagnosis to get anxiety meds (for example), you need an anxiety diagnosis (though anxiety has a very high co-morbidity rate with Asperger's). So you don't necessarily need an Asperger's diagnosis if what you want is medication. Probably you could also get speech, occupational, or physical therapy if you could demonstrate enough of a delay in those areas without an Asperger's diagnosis. BUT, if having an Asperger's diagnosis makes it easier for you to get those things, and you think your child needs them, then I would say use the tools you've been given.

 

Just so you know, the Apserger's diagnosis is going away anyway in the new diagnostic manual; it's being folded in as part of the new Autism Spectrum Disorder diagnosis.

 

Also, FWIW, my son with Asperger's does a lot better at home than at school. Not only was the academic work at school not challenging enough, but the sensory environment and social wreckage that are elementary school were so overwhelming that they pushed him into a serious anxiety disorder and suicidal ideation by the time he was in third grade. So school is NOT the best thing for all kids with Asperger's, despite what a particular "professional" may opine.

 

That said, though, I have a good friend whose Aspie has been in school all the way through and is about to finish high school at the top of his class and seems content enough there, so don't automatically write school off as an option either.

 

Good luck! :)

[lulubelle]

He did go to OT for a short time and was diagnosed with Coordination Disorder. He is sensitive to loud noise and overly hyper in water.

 

His processing speed was at 50%. Intelligence was high, but not genius. The neuropsych doctor said part of his problem is that he is so bright with a significantly lower processing speed that gets him confused quite a bit of the time. He is unable to transition well and separate his thoughts quickly enough.

 

I was willing to try med's, if it is ADHD, just to see if it would help him in any way.

 

He has developed anxiety this past year, but it was helped with therapy.

 

He takes so long to school. I don't have much room for my other two kids. He needs to be walked through most of his school stuff. He spaces out so much and has a hard time doing multiple step things (like read, think and write). I've started doing more of reading instructions and writing his answers for him and that has decreased his school time somewhat. He requires intense repetition for most things in order to know it.

 

I know we do better with him at home, but part of me wishes I could focus on my other two kids more. Ds does not want to go to school. He's very comfortable at home, but he can make life for everyone else pretty hard at times. Just wishing there was a magic pill that does not exist.

 

Thanks for taking the time to read and reply!

[wapiti]

His processing speed was at 50%. Intelligence was high, but not genius. The neuropsych doctor said part of his problem is that he is so bright with a significantly lower processing speed that gets him confused quite a bit of the time. He is unable to transition well and separate his thoughts quickly enough.

 

Bright with slow processing speed is not an uncommon combination :glare:

 

I was willing to try med's, if it is ADHD, just to see if it would help him in any way.

 

He has developed anxiety this past year, but it was helped with therapy.

 

If you try meds, I'd remind the doc about the anxiety when he's choosing which med to try, just because my understanding is that anxiety and adhd are a tricky combination.

 

He takes so long to school. I don't have much room for my other two kids. He needs to be walked through most of his school stuff. He spaces out so much and has a hard time doing multiple step things (like read, think and write). I've started doing more of reading instructions and writing his answers for him and that has decreased his school time somewhat. He requires intense repetition for most things in order to know it.

 

 

If you haven't already, I'd start teaching typing.

 

Depending how far outside the box you want to look, I might think about developmental vision issues or dietary sensitivities...

 

In any event, I'd plan on re-testing as you get into middle and high school, in case accommodations on the SAT might be available to him (for which a diagnosis of either adhd or aspergers would come in handy).

[Murmer]

I would research your area...where I live there are limited services for most issues but get a spectrum label (which included Aspergers) and now insurance has to cover up to 20000 in services. There are also some other help available like grants ect. So even if you don't agree with the diagnosis perhaps having it can open up some doors.

 

Also I think the hard part of High Functioning Autism/Aspergers is that these child are functioning and at times functioning at a high level...but then something happens and its like oh yeah there's that Autism thing. Sometimes it can be ignored or almost forgotten and life is almost normal. It causes second guessing and questioning about if you made it all up....then the fit occurs or the social interaction that they can't do and its like well maybe they really do have this...it can be hard.

[lulubelle]

We did have ds tested a couple years back by a behavioral optometrist and there were no issues. And, just a few months ago we started an elimination diet. I'm still up in the air with the diet. I think it had a placebo affect initially, in that, he was so conscience about it all the time and wanted to do well that he made himself do well. But, his behavior wasn't perfect and it didn't last throughout the whole diet. I think it exhausted him mentally to have to work so hard at it. Anything where he has to work hard mentally wipes him out and the same physically.

 

He is a serious carbo-holic. I've just continued to limit the amount of gluten carbs he eats. He seems much more satiated with non-gluten foods.

[kbutton]

 

Also I think the hard part of High Functioning Autism/Aspergers is that these child are functioning and at times functioning at a high level...but then something happens and its like oh yeah there's that Autism thing. Sometimes it can be ignored or almost forgotten and life is almost normal. It causes second guessing and questioning about if you made it all up....then the fit occurs or the social interaction that they can't do and its like well maybe they really do have this...it can be hard.

 

Thanks for this insight--we are having our son evaluated, and we feel this way a lot of the time.

[dmmm]

I agree. The only reason a child needs any sort of a label is for further resources. You have the resources you need in place and because you homeschool there's no IEP. I'd just go with what you have.

 

This is so not true. If she got the dx, she would have access to resources that would be very helpful. You can get services for free through public school because you can get an IEP.

 

Being in a similar situation, I would suggest at the minimum you should get your son group social skills training. There is no medication for Aspergers. You can medicate symptoms, but I agree not to medicate for ADHD. If your child has any anxiety, the meds can increase it. However, the diagnosis help me parent my child better. That may sound horrible, but once you know what you are dealing with, things click and you can understand what is going on in their minds.

 

These doctors are ignorant and prejudice about homeschooling. My dd went to school and couldn't function because she couldn't follow the teacher and her anxiety was overwhelming her learning. She would have failed even worse in the gifted program. I can challenge her better than any school because she would just get overwhelmed and shut down in class.

 

Grrrr. I am really angry for you,

[Tokyomarie]

This is so not true. If she got the dx, she would have access to resources that would be very helpful. You can get services for free through public school because you can get an IEP.

 

I really depends on the state as to whether or nor a child who homeschools can get an IEP and access public school services. Federal law requires that public schools evaluate students no matter where they go to school, but access to services beyond an evaluation varies state to state.

 

This HSLDA page on Special Needs is one place to start to determine provisions for a particular state. Wrightslaw is also a good site related to special education law.

[Crimson Wife]

There is something called "Broad Autistic Phenotype" which is for people who have some spectrum traits but the severity doesn't qualify the individual for a diagnosis of Asperger's, HFA, PDD-NOS, or Non-Verbal Learning Disorder. Often those with BAP have relative(s) with a formal diagnosis. There are several in my extended family, including my DS (his formal diagnosis is ADHD + anxiety, though NVLD is a possibility that has not yet been ruled out).

 

I would recommend reading "Healing the New Childhood Epidemics" by Dr. Kenneth Bock and seeing if any of the nutritional support recommendations in that book help your DS any.

[StaceyE]

We've been down this road also - it's just so frustrating and sometimes very disheartening. My suggestion is to keep seeking the right doctor, because then you have guidance you can trust. Our DD was enrolled in public school at the time, and their educational assessments were really good, but we needed a medical doctor to confirm for insurance purposes. It took us quite a few attempts over a period of three years to find a person who could see our daughter for her strengths and challenges accurately, who was willing to call and talk to the staff at the school, and then assess her in a way that felt right to us. The Dr. confirmed what we knew - that she didn't quite meet the Asperger's dx, but fit into PDD-NOS with severe ADHD. We were also lucky enough to find a social worker who has a private practice specializing in kids with autism and ADD and has been a great resource.

 

I agree with a previous poster about a dx helping you to become a better parent. Reading about and understanding how our DD was affected by autism and adhd led us to pulling her out of public school, changing the types of activities she was enrolled in and seeking services to help her continue to grow. Neither DH or I can believe how far she has come along, how happy she is, and how much easier it is day to day to parent her. We also elected to gently tell our dd with the help of our social worker about her dx so that she could develop some self-awareness. It was hard for her to accept at first, but I think necessary so that her opinion of herself wasn't just that she was a "failure at everything" (her words). We hope that she is able to be comfortable enough in the future that she can disclose to those close to her and advocate her unique needs in order to continue to be successful.

 

Best of luck to you, it is certainly an interesting journey!

[ajaabney]

You might also want to consider hiring a tutor, especially if you live near a university that trains special education teachers.  Then you would have more free time to work with your other children.  My son has struggled with similar issues off and on, and it does seem to help to have someone else working with him part of the time.