Re: OCD and Aspergers

September 5, 2009

Hi, there.? I have a sixteen year old daughter with OCD and Asperger's too.? She

was diagnosed with OCD at seven and the Asperger's at thirteen.? I think that we

all suspected that had more going on than the OCD but didn't pursue

testing until it was a problem.? It has been my experience that both disorders

play into her behavior.?I didn't know how much the Asperger's?affected

,?because, like your daughter, hers is what I consider to be " mild. " ?

has long been in treatment for the OCD and has taken medication for it for more

than half her life.? It wasn't until her Freshman year in high school that the

Asperger's really made its impact on her.? She almost failed all of her

classes.? Now she is in a directed studies class at school and has an IEP

instead of a 504.? The class is made up of six kids with Asperger's and is

taught by a teacher who really understands them.? During the week, the kids

practice social situations, problem solving,?social skills, and work on

homework.? There is an aide in the class who hand-delivers assignments that

haven't been turned in.? It is the best thing that has happened to

scholastically.? We were so lucky to be in a high school that already had to

program going.? At home, I find that a lot of 's issues (getting upset and

losing her cool) come from the Asperger's and not the OCD.? This could very well

be because her OCD has been treated for so long and is under a good amount of

control.? Many OCD and Asperger's symptoms are the same or similar and it is not

uncommon for people with Asperger's to have obsessions.? They can?also have

trouble sleeping.? That has always been a big thing for us.? I have to admit,

the impact of the Asperger's really surprised me.?To get into the class, she had

to go through all of the special education testing.? We found out that she has

very poor visual perception, which has had an?impact on her math skills.? This

is not uncommon for kids with Asperger's.?? After about half a year in the

directed studies class, I even asked t

he teacher if she thought really has Asperger's because I still couldn't

quite get my mind around it.? The answer was a big yes.? The teacher assured me

that was in the right place and that she definitely has it.? I don't know

if anything I have said here helps you.? Maybe it helps knowing that there is

another kid like yours out there!? Kelley in NV

September 5, 2009

Hi Sandy. My dd is the one who went to Remuda Ranch. I know I e-mailed you

offlist but I don't remember what I told you. I apologize if I have already

shared this. My dd was actually diagnosed with Asperger's while she was at

Remuda Ranch. I didn't have any idea before she went. The psychologist spent

over an hour asking me questions by phone once she was admitted. This was aside

from all the intake questions which takes forever.When my dd had been there

about 5 weeks we received a phone call asking if we would allow extra testing

because they felt my dd was different than the other girls. I was hesitant but

they told me they suspected a nonverbal learning disability and that it could be

responsible for a lot of her difficulties. I allowed them to do the testing. It

did show she had a NVLD but also they felt they could diagnose her with mild

Asperger's as she met all the criteria. They spent time working on her social

skills. When we went to visit for

family week they pointed out lots of behaviors that they attributed to

Asperger's. They spent time talking to her about this and worked with her every

time they saw a situation they thought was from the Asperger's. My dd also

struggled greatly with perfectionism related to school work. To the point that

she could not allow teachers to have her work because she would rather have a 0

because she didn't hand it in then a 90% because she made mistakes. They worked

a lot on her perfectionism on the school part there. They would take papers from

her that were only partially completed and it would count as a grade. They did

things like not allow her to check her work at all. They would give her a

certain amount of time and say your done, period, finished or not. They would

have her intentionally answer questions wrong. These were grades that actually

counted in her final grade. She learned that the world didn't end when she

received a grade that she didn't

like and that her self worth was not dependent on these things. She also had

severe social phobia which was caused by the Asperger's. Sorry this post was so

long! Let me know if you have other questions. Stormy

________________________________

To:

Sent: Saturday, September 5, 2009 5:56:36 AM

Subject: OCD and Aspergers

Hi Everyone,

We are still trying to figure out how to help my daughter, 16. She is

the one who had residential treatment suggested. We have recently had

a behavior analyst at the house to evaluate her for her cyber school

IEP. She told me multiple times that 's main problem is

Asperger's syndrome. I do believe she has mild Aspergers but I

believe it is the OCD that is ruining her life, causing rage and

depression. There is an intensive out-patient program at the

University of Pennsylvania Center for the Treatment of Anxiety. They

handle OCD, PTSD, GAD etc. I called them and they do not have any

capacity to address Aspergers though they said they have one

therapist who has had a little training in it and they usually refer

those cases to her. I was leaning towards getting her enrolled in

this program until the behavior analyst (who wrote a book on ABA and

has an autistic son) kept saying the emphasis should be on the

aspergers. Now I am confused again.

Last night she was screaming because she got an answer wrong on her

lesson. She has the perfectionism OCD. I just feel that it is the OCD

that is causing her the most pain. Just not sure how the Aspergers

(very mild) would affect the success of regular OCD/ERP treatment.

Sandy

September 5, 2009

Hi Sandy, my OCD son also has Aspergers. I consider it " mild " also. It can be

tricky to pick out what is Aspie and what is OCD. If the perfectionism hasn't

always been there, I would treat it as OCD. Now the Aspie part can also have

that " stubborness " for being right, having to have something perfect, etc.; but

I think that is something you would have seen all along too; so if it's a recent

development, I would assume it's OCD.

Can you already pick out what you think is Aspie vs OCD? Though I guess this is

all new to you still, probably haven't had much time to really read & think

about it all and relate all of it to your daughter.

My perspective on experts -- to have an autism expert is good, but they may look

at any OC behaviors as part of the autism/Aspergers. Not always the case, as

with . His OCD was " typical " and separate from Aspergers. It began in

6th grade.

A common saying with Aspergers is that when you've met one person with

Aspergers, you've met ONE person with Aspergers. They (Aspies/autistics) aren't

all the same, just like we aren't. Oh they share the traits, or some of the

traits, but the severity will be different, there's their own personalities to

take into consideration, etc. Sort of holds true for OCD too! I know when

teachers, or counselors or other, knew had Aspergers, they immediately

thought of his needing task lists or maybe an aide or any of the supports you

read about for school. He didn't need all of that, though I understood why they

thought of them since often those supports are needed; but you can't just assume

it for all on the spectrum.

For therapy -- I'm guessing how I would handle this in your position. I would

try to pick out where the Aspie relates to her, does it interfere with

understanding some concepts, does she take things literally, etc. So will she

understand what a therapist is trying to get her to do and why, with ERP, etc.

And she can work on her issues as OCD. I don't think the Aspergers will

interfere in working on her OCD but maybe certain things.

has the scrupulosity type of OCD (and a touch of perfectionism too) and

that Aspie part just keeps him from understanding the scrupe is OCD. He thinks

he's a bad person for having his thoughts, thinks the OCD just makes the

thoughts more frequent, makes him dwell on them, but doesn't think the OCD is

causing the thoughts. He's a smart guy, really, but just can't grasp it. I

think that is the Aspie part. When he had those crazy routines, rituals, he

understood that as OCD, they were new, he hadn't been doing them prior to that,

etc.

Well I'm hurriedly typing and thinking, this may not make much sense! You know

your daughter best. Look at what the behavior person is recommending for your

daughter, how they will work on it, it may actually be similar to how you would

work on some of the same things. But I think you can approach most of it and

treat it with CBT/ERP for OCD.

By the way, likes to makes 100's but is okay not making them. However,

in 6th grade - think it was, he's 20 now - he didn't turn in a paper to the

teacher that had been graded in class because he didn't do well on it. Ugh,

think it was an 80-something. So I had to sit and show him examples of

averaging grades and how a zero for not turning it in would pull the grade lower

than a grade 50 or 60 or lower, etc. He's an A+ math student but hadn't really

thought through this. He was okay with turning them in after that. His OCD

began in 6th grade.

Gotta go,

In , Sandy Seaman wrote:

>

> Hi Everyone,

>

> We are still trying to figure out how to help my daughter, 16. She is

> the one who had residential treatment suggested. We have recently had

> a behavior analyst at the house to evaluate her for her cyber school

> IEP. She told me multiple times that 's main problem is

> Asperger's syndrome. I do believe she has mild Aspergers but I

> believe it is the OCD that is ruining her life, causing rage and

> depression. There is an intensive out-patient program at the

September 6, 2009

Thanks so much, everyone. It does help just to know that there other

kids and parents out there like this. was always so gifted and

so good at school, that I think her other issues were just never

picked up and addressed. We always talked with the guidance

counselors about her problems with social issues but the most they

ever did was take her to lunch once or twice with a few other girls.

In fifth grade, she started developing sensory problems, stomach

problems and we started homeschooling, then cyber schooling. One of

her gifted teachers suggested she might have aspergers. So I have

known for several years that aspergers was a possibility. But even

then she was doing well in the cyber school though it was a struggle

at home. It was when the OCD kicked in that school became impossible

and life has just become miserable for her. I do see how the

aspergers could make it hard for her to understand the cognitive part

of the therapy. I guess we will just have to try it or try to find a

therapist that understands both parts of it. The behavior analyst is

going to arrange for a school psych evaluation with someone very

knowledgeable about aspergers so maybe we will get more specific

information about that aspect. Again, I so appreciate hearing about

other kids with both aspergers and OCD.

Sandy

September 6, 2009

I would be so overjoyed to find a classroom like this for my

daughter. Will pass this description on to the behavior analyst. If

they could find something like this for , it would wonderful!

Sandy

September 6, 2009

A big problem in diagnosing AS is defining it and also realizing that even

within the criteria, some variability exists between individuals with AS. Most

in the psychiatric community say my son does not have AS, but developmental

pediatricians and a pediatric neurologist have said he does. I use the

diagnosis to get his needs met (insurance reimbursement)and to introduce the

possibility that his needs may be greater than thought on first glance at him.

Honestly, I go back and forth about him having AS. I can definitely say that he

has some autistic traits (social deficits, poor motor skills and motor planning,

sensory dysfunction, and some mild learning differences that are typical for a

child with AS or NVLD). As long as his weaknesses are treated, I don't care

about the diagnosis.

The trouble is that so many teachers and practitioners and therapists seem to

need that diagnosis because they don't take the time up front to " learn " my

son's behavior and needs. I have found that as a result of not having a

diagnosis to start with it's hard to transition from year to year, practitioner

to practitioner. They seem to have to learn him all over again and try to

determine his needs as they see it (which obviously can be erroneous).

I wish you well and I'm glad you found this place.

Bonnie

September 6, 2009

I found that the Asperger diagnosis helped my dd tremendously, being that she

was older when she was diagnosed. We knew that she had severe anxiety and

bipolar but there was still a missing piece. Once she was finally medically

stable there was still something different there. The diagnosis really helped

her understand herself. I think it actually made her feel better once she was

able to accept it. It explained so much for her and why she was a bit different

than others and why she struggled with certain things no matter how hard she

tried. Stormy

________________________________

To:

Sent: Sunday, September 6, 2009 10:39:09 AM

Subject: Re: OCD and Aspergers

A big problem in diagnosing AS is defining it and also realizing that even

within the criteria, some variability exists between individuals with AS. Most

in the psychiatric community say my son does not have AS, but developmental

pediatricians and a pediatric neurologist have said he does. I use the diagnosis

to get his needs met (insurance reimbursement) and to introduce the possibility

that his needs may be greater than thought on first glance at him.

Honestly, I go back and forth about him having AS. I can definitely say that he

has some autistic traits (social deficits, poor motor skills and motor planning,

sensory dysfunction, and some mild learning differences that are typical for a

child with AS or NVLD). As long as his weaknesses are treated, I don't care

about the diagnosis.

The trouble is that so many teachers and practitioners and therapists seem to

need that diagnosis because they don't take the time up front to " learn " my

son's behavior and needs. I have found that as a result of not having a

diagnosis to start with it's hard to transition from year to year, practitioner

to practitioner. They seem to have to learn him all over again and try to

determine his needs as they see it (which obviously can be erroneous).

I wish you well and I'm glad you found this place.

Bonnie

September 6, 2009

This discussion is why I was so torn when it was time for us to find out my

daughter's test results last week--I didn't know if I wanted the diagnosis to

prove we weren't making this up and she could get the necessary help, or I did

NOT want her to have issues that had names. While we came away with definitive

OCD and GAD, the Aspergers is so borderline that it was not officially

diagnosed, so I worry she won't get help for this aspect...and it seems to be

causing the most difficulties at times...meltdowns, emotional immaturity, lack

of pragmatic language skills and social skills. I'm with you, I don't care in

the end what they call it, because we LIVE it, but I just want to get the help

we need.

Last night we put our tent up in the backyard, and her anxiety was sky

high...much worse then when we camped this time last year. Then this morning she

literally fainted when I was looking at a splinter she had...now she's dizzy and

nauseated. She just seems to get more anxious with more physical symptoms

almost daily. We're finding a psychiatrist to discuss meds.

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