ASperger's diagnosis

[TracyRee]

DS, 5.5yo, just received an Asperger's diagnosis. We'd been blaming is challenging behaviors on PANDAS for so long... now I'm going to have to sort out when he's having an Asperger's moment vs a PANDAS episode.

 

Anyone else have a pandas kiddo with Asperger's?

[thereishope]

Hi. May I ask if the issues that led to an Asperger's dx were always there or were they triggered as part of PANDAS and never completely went away? Meaning, was autism or Asperger's a concern pre-PANDAS?

[TracyRee]

Hi. May I ask if the issues that led to an Asperger's dx were always there or were they triggered as part of PANDAS and never completely went away? Meaning, was autism or Asperger's a concern pre-PANDAS?

 

 

Yes, there were things there before pandas, we just didn't realize or when we did we thought he would outgrow a lot of it.

[MomWithOCDSon]

Though no one's labeled him as such, our son's IEP testing with the school psychologist indicated some "autism-spectrum" issues which we, too, had recognized prior to entering the world of PANDAS. He's always had "learning differences," even though he's generally tested on the "gifted" end and been placed in advanced and gifted classes most of his academic life thus far. And socially, he's always been a bit of a lone wolf and hyper-focused on what's interesting to him, even when his peers would try to wave him off or change the topic. Sound familiar?

 

What we notice, along with almost every other psychological issue he's ever expressed in his short life-time, like OCD, the PANDAS exacerbates everything . . . the sensory integration challenges, the autism-spectrum processing and social challenges, the ADHD, the OCD. It's as though the brain wraps everything up in the same package in some way.

 

I guess I would say, since PANDAS is a physical/medical issue, we're meeting that with physical/medical responses, like abx. Meanwhile, the processing, sensory and OCD issues we're trying to meet with therapy (CBT and ERP), school accommodations and patience. It's been my experience that with therapy and some consistent parental and school coaching, many of the primary asperger's behaviors (especially the social ones) can be outgrown.

[TracyRee]

Thanks, I agree that their brains "wrap everything up in the same package in some way". That's what makes it hard to know which way to attack it.

 

Though no one's labeled him as such, our son's IEP testing with the school psychologist indicated some "autism-spectrum" issues which we, too, had recognized prior to entering the world of PANDAS. He's always had "learning differences," even though he's generally tested on the "gifted" end and been placed in advanced and gifted classes most of his academic life thus far. And socially, he's always been a bit of a lone wolf and hyper-focused on what's interesting to him, even when his peers would try to wave him off or change the topic. Sound familiar?

 

What we notice, along with almost every other psychological issue he's ever expressed in his short life-time, like OCD, the PANDAS exacerbates everything . . . the sensory integration challenges, the autism-spectrum processing and social challenges, the ADHD, the OCD. It's as though the brain wraps everything up in the same package in some way.

 

I guess I would say, since PANDAS is a physical/medical issue, we're meeting that with physical/medical responses, like abx. Meanwhile, the processing, sensory and OCD issues we're trying to meet with therapy (CBT and ERP), school accommodations and patience. It's been my experience that with therapy and some consistent parental and school coaching, many of the primary asperger's behaviors (especially the social ones) can be outgrown.

[LNN]

Labels are so hard - you search and search so you know "what's wrong" but then the label itself can sometimes make things harder. You're supposed to correct/punish bad behavior, but if you know it's caused by PANDAS, the way you address the behavior can change.

 

Likewise, I can imagine how hard it is to wonder how much of your child's approach to life you should accept/embrace and how much you should try to shape/modify.

 

I'll say that my son's 1st grade teacher told me at the end of the school year, after the worst of things had passed, that there was a time she considered my son to be "asperger-like' and it was only after he started to get well that she began to think that maybe he didn't have asperger's. (The mice in the Columbia study also became "aspie"-like.) When he started 2nd grade and his teacher complained that my son was "too social" and he kept coming home talking about all of his friends, it was the happiest time for us. (he had zero friends in kindergarten and 1st grade).

 

I'm not telling you to deny an asperger's diagnosis. I guess I'd just advise you to remember that labels and peoples' perceptions can change. So try to only focus on the things that cause your son distress or are completely inappropriate behaviors. When my son gets angry, my husband says something like "Don't get so angry". You can't tell someone how they should or shouldn't feel. So what I try to do is say the anger/feeling is ok. But it's the way that feeling gets expressed that can be right or wrong. We spent a lot of therapy talking about being responsible for actions and behaviors and owning those actions regardless of the disease that triggered them. So if he acts out, obviously that needs to be addressed regardless of cause. But if your son could care less if he's a lone wolf or if no one else shares his intense interests, then it might break your heart but probably isn't where you should put a lot of energy.

 

I don't know if it would help, but you might want to browse a few books by Temple Grandin or Ten things Every Child with Autism wants you to Know - books to give you insight into your son's perspective on things. You might also want to check out autismone.org for their blogs and articles. Just like it helps us to hang out with other pandas parents, it can help to share experiences with other parents in the asperger's community. I'm often struck by how much the two communities have in common.

[peglem]

DS, 5.5yo, just received an Asperger's diagnosis. We'd been blaming is challenging behaviors on PANDAS for so long... now I'm going to have to sort out when he's having an Asperger's moment vs a PANDAS episode.

 

Anyone else have a pandas kiddo with Asperger's?

I have an autistic teenager with PANDAS. In hindsight, I have come to believe that the autism was actually caused by the PANDAS interfering with development. So, taking care of the PANDAS will stop the interference, but not restore development that never happened or happened incorrectly. So, I think we'll have a lot of work on development, particularly social/emotional development, after the PANDAS is resolved. We're using RDI (relationship Development Intervention) for that. Its a program that works on development by building neural connections the same way that it happens in typical development, just amplifying the process. We've seen a lot of therapy and behavioral programs over the years and RDI is the only program I've found that really addresses the development itself, instead of just correcting/modifying behavior.

[michele]

I have also gone down this possible Asperger diagnosis road. It was actually a mom on the TSA local board that told me her son had tourettes and aspergers and she said to me it sounds like my son might also have Aspergers and Tourettes. It is a hard line to define since during a PANDAS episode or a Tourettes waxing cycle symptoms flair up and can look more Aspergers. My gut is that the longer the brain inflammaion exists from the PANDAS the more the ASD symptoms appear because of the anxiety.

 

Over the years my son has been very obsessive in his thoughts. He gets fixed interests that never go away but change over time and sometimes return. He can spend oodles of time looking things up and researching details on a subject. He always has something he is collecting and wanting, but when he gets it, he moves onto another thing he wants equally as much. So many of these symptoms overlap.

 

My son has always had motor delays especially visual and fine motor especially with his propriosensory system. At times his sensory issues are worse like taste and smell and some noises. Last summer he had horrible meltdowns and tantrums that were very agressive when he was off his structured school schedule. I had him evaluated by the psychiatrist the TSA mom had recommended and he did diagnose him with Aspergers, Tourettes and ADHD. However, he is very social and loves to talk to people. But he gets caught up in talking about things he is interested in and fails to join on other peoples conversations he may be less interested in. Or when the conversation has shifted he is still back at the one he was talking about.

 

The school claims they don't see the Aspergers. He has no behavior issues there which is a blessing and they see him as very typical.(however they agree to service him so I do wonder how much they tell me) He does qualify for OT weekly at school for sensory, visual and fine motor skills. I also take him to private OT weekly. Also his organization is lacking at school and home. The worst symptom for him at home is the impulse ADHD though. I do take him to a social group and a psychologist to try to change some behaviors. He also sees a psychiatrist for meds monthly. He overreacts to things and gets his feeling easily hurt and then acts out.

 

Also he has bowel issues and has had encopresis and puts his fingers in his bottom (gross). Another symptom of concern is the socially inappropriate words he uses that are "private" related like butt, weiner, sexy, juicy, tug tug. He is only 8 so it does really worry me about where the thoughts are coming from. Maybe it is the Tourettes or the PANDAS that makes him think bad thoughts or maybe it is the Aspergers.

 

I have to admit though when I took him to the hospital for ASD testing called the ADOS he passed it because he interacted well with the speech pathologist. Also the school speech pathologist tested him and he did not have pramatic problems with his speech.

 

So I have to say, for school purposes it may help to have the Aspergers diagnosis because now he can get help there on communication, and OT and organization and tutoring under OHI. Also I was able to get advocates through MRDD for the ASD which has helped with the IEP planning. But, I still struggle with what is Aspergers and what is the tourettes or the ADHD or the PANDAS. They may all overlap and all run together. I am trying to focus on the behaviors themselves instead of the diagnosis. I wish the answers were easier but for us they have not been. We are scheduled for a PET scan next month and maybe it will give us some concrete answers. The PANDAS CaM Kinase testing was positive but in the lower PANDAS range. The tics come and go and change following illness, and the OCD and anxiety get worse after illness too, along with the urinary and encopresis and behaviors. However, even on antibiotics daily things are never completely better. He got more irritable on steroids for a month but then he did improve. The meds he is on keep him stabilized but they need to be adjusted almost monthly. I wish there was an end in sight. Maybe if we can get IVIG after the PET we will see some improvement and can wean off some of the meds. The risperdal is causing weight gain and I just worry about longterm effects but it does help with the anger tantrums.

 

This is a good topic so I appreciate your bringing it up here because I really think the PANDAS and Aspergers are related. Remember Aspergers is on a spectrum and maybe PANDAS is also on that spectrum. No two Autistic Spectrum Disorders are exactly alike and some are more higher functioning then others. Just like no two PANDAS cases are exactly alike on this forum.

 

Michele

 

 

Labels are so hard - you search and search so you know "what's wrong" but then the label itself can sometimes make things harder. You're supposed to correct/punish bad behavior, but if you know it's caused by PANDAS, the way you address the behavior can change.

 

Likewise, I can imagine how hard it is to wonder how much of your child's approach to life you should accept/embrace and how much you should try to shape/modify.

 

I'll say that my son's 1st grade teacher told me at the end of the school year, after the worst of things had passed, that there was a time she considered my son to be "asperger-like' and it was only after he started to get well that she began to think that maybe he didn't have asperger's. (The mice in the Columbia study also became "aspie"-like.) When he started 2nd grade and his teacher complained that my son was "too social" and he kept coming home talking about all of his friends, it was the happiest time for us. (he had zero friends in kindergarten and 1st grade).

 

I'm not telling you to deny an asperger's diagnosis. I guess I'd just advise you to remember that labels and peoples' perceptions can change. So try to only focus on the things that cause your son distress or are completely inappropriate behaviors. When my son gets angry, my husband says something like "Don't get so angry". You can't tell someone how they should or shouldn't feel. So what I try to do is say the anger/feeling is ok. But it's the way that feeling gets expressed that can be right or wrong. We spent a lot of therapy talking about being responsible for actions and behaviors and owning those actions regardless of the disease that triggered them. So if he acts out, obviously that needs to be addressed regardless of cause. But if your son could care less if he's a lone wolf or if no one else shares his intense interests, then it might break your heart but probably isn't where you should put a lot of energy.

 

I don't know if it would help, but you might want to browse a few books by Temple Grandin or Ten things Every Child with Autism wants you to Know - books to give you insight into your son's perspective on things. You might also want to check out autismone.org for their blogs and articles. Just like it helps us to hang out with other pandas parents, it can help to share experiences with other parents in the asperger's community. I'm often struck by how much the two communities have in common.

[bubbasmom]

Wow, all this talk of asperger's. I have always thought my son, now 13 and has PANDAS, had aspergers. He's always had the 'social' quirks, shy beyond any kid should be, and a temper (which I understand could come with aspergers). Would a diagnosis help him? I'm thinking there's no cure so maybe he doesn't need one more label.

And I agree, as people give me the typical symptoms of PANDAS, and my son fits the picture for the MOST part, but all this extra stuff like temper, and ODD kick in in addition to the OCD and a little bit of tics that fit it more with PANDAS.

WOW ITS ALL SO CONFUSING.

[peglem]

Rages and ODD are not untypical in PANDAS.

[ajcire]

I definitely attribute my son's temper to Pandas.. his irrational reactions to things.... he has some quirky traits but he wouldn't fall in the aspergers category although some of the quirks definitely overlap those you might see in a child with aspergers. When he's uncomfortable he displays lack of eye contact (but only when put on the spot by someone he doesn't know well really) and you can sense his discomfort in his voice when he is answering someone he isn't comfortable with as well... he gets a formalness about him and very serious.

 

Rages and ODD are not untypical in PANDAS.

[TracyRee]

Thank you all for the replies. I do think the diagnosis will help him in school, he'll get the understanding and support he'll need.

 

It's so hard having that nagging feeling that maybe it's really all pandas and can get better....

 

deep down I don't think it is as there were red flags that we didn't know were red flags long before his pandas onset.

 

i guess the pandas just worsens it as it's gotten so much more pronounced. or development makes it so that it can't be ignored (no more "he'll grow out of it")

 

regardless, i just want him to be happy.

[michele]

I am right there with you Tracy. I have been chasing the same posibilities. It is so frustrating. The Dr. tells me she thinks he will keep getting better with age. I wonder if she just says that so I don't worry as much about his future. So many things I read say they get worse during the teen years.

 

Michele

Thank you all for the replies. I do think the diagnosis will help him in school, he'll get the understanding and support he'll need.

 

It's so hard having that nagging feeling that maybe it's really all pandas and can get better....

 

deep down I don't think it is as there were red flags that we didn't know were red flags long before his pandas onset.

 

i guess the pandas just worsens it as it's gotten so much more pronounced. or development makes it so that it can't be ignored (no more "he'll grow out of it")

 

regardless, i just want him to be happy.

[thereishope]

My son had to be screened for Asperger's. By the time his appt came, he was recovering and he did not get the dx. I have a feeling if he was screened at his worst, he would have gotten the dx.

[EAMom]

I don't know if it would help, but you might want to browse a few books by Temple Grandin or Ten things Every Child with Autism wants you to Know - books to give you insight into your son's perspective on things.

 

I love Temple Grandin! There's an HBO movie out about her...but I haven't seen it (no HBO). Here's an interview with her:

 

"Look Me in the Eye" is another good book http://www.amazon.com/Look-Me-Eye-Life-Asp...s/dp/0307395987

Edited March 18, 2010 by EAMom