Dual Diagnosis - Autism and MR

[arminnie]

Do not shed too many tears, your daughter is still the same wonderful person, with the same challenges and gifts. Only time, your love and the available supports will tell what her potential is, not a diagnosis.

All children have gifts, they just sometimes come in different packages.

What wise words.

I am in my 60s so have seen several of my friends' children grow up with various challenges ranging from DS to severe CP. With lots of help they are now able to have jobs, live somewhat independently (group home for a couple), and just be delightful human beings that I am privileged to know.

 

[rjthkids]

One of my daughters carries both an autism and MR label. I finally ended up getting the MR label because in our state she could not qualify for Developmental Disability funds without having a documented I.Q. of below 70 once she turned six years old.

Never mind that my daughter at that time was pretty much nonverbal *AND* she is blind. Hmmmm.....how many I.Q. tests are normed for children who are blind and nonverbal? Not any that I know of!

But, it was the case of "get-the-silly-paper-so-we-can-get-our-funding." We homeschool so it wasn't going to change what we did with her and how we treated her. She came back with an I.Q. score of 40, which I don't believe is accurate. But, we've gotten thousands of dollars of funding for adaptive equipment for her that we wouldn't otherwise have had access to, so the I.Q. number did it's job. Beyond that, I treat her the same way I did before "the number".

 

[BeckyScott]

I second (or fourth or eighth) what everyone else is saying.

You gotta have the label to get the services. That's the way it works, and it sucks. It's a necessary evil. Using standardized testing that isn't appropriate for our kids, taking a number off of those that magically translates into an acronym, so that the child can get services that some person (who has a big degree but probably hasn't walked a mile in the moccassins) has deemed appropriate treatment. It all seems random.

When youngest DS was first diagnosed, that very first meeting, we were told over and over again, he's the same child he was yesterday. And we had to tell that to many people, too.

I don't mind it so much. Because, if this makes sense, I like to know what I'm up against. Better the devil you know than the devil you don't. So to speak. But neither DS has had a test yet that I felt really reflected who they were, really, what their real strengths were, the extent of their abilities.

One of us needs to invent that test. We'd be freakin' rich and doing all of us a big favor.

 

[jerseymom473]

Just wanted to say have a wonderful trip and happy birthday to a beautiful little girl!! Enjoy!

 

[Disneylvr]

Thank you everyone! I finally got the written report in the mail (the initial report was over the phone since we traveled about 100 miles for the assessment) and the neuropsychologist assessed Madelyn's MR as being "moderate." Her autism is also rated "moderate" which doesn't differ from last year's assessment. At school Madelyn is getting ABA DTT, MT, OT, Speech and PT. Her IEP goals are challenging and she is making progress (slowly) towards them. I guess my concern is that if the school learns about the MR diagnosis they will try to lower their expectations for Madelyn so I am reluctant to give them a copy of the assessment. My whole purpose of going to the Thompson Center for Autism for an assessment 2 years in a row is because the school district values professional assessments from outside sources. Last year they put all of the Thompson Center's recommendations in to her IEP and that was my purpose this year. Now I am concerned they will have lower expectations for Madelyn IF they learn about the MR. They had planned on using the Thompson Center's IQ results, but maybe now I should request that the school do their own??? I just don't know what to do. Her IEP is on March 9th so I don't have much time.

 

[BeckyScott]

It's possible, likely even, that the school will get hold of the results anyway. At some point you've probably signed a release of information, or will in the future, and it will be shared around.

And they probably won't want to re-test her since the test is so current.

I'd just wing it. Tell them that of course it's difficult to do an IQ test on kids w/ autism and of course the scores might not be a good reflection of her ability.

May I ask, was there a substantial scatter on her sub-scores? I know with DS our reports have always pointed out that he had scattered sub-scores, and that because of the autism, the higher ones were probably a better reflection of his real IQ.

I need to PM you, looks like we will be headed to Thompson Center ourselves, I'd like to know what you think, although by your post I'm guessing you like them.