Dual Diagnosis - Autism and MR

[Disneylvr]

We just received the news, after DD's annual assessment, the neuropsychologist has added the MR diagnosis. She was diagnosed with autims at the age of 33 months and she is now almost 6 years old. The doctor acknowledged that the dual diagnosis is now less common (it used to be 75%) than it used to be but is still diagnosed in children with autism. Does anyone one else have a child with the dual diagnosis of autism and MR? Is this something I should not let the school district know about?

I just had an hour of crying and now I am ready to learn more and continue to make sure that DD makes progress and gets the services she needs.

 

[mechurchlady]

I send you big hugs and chocolates and warm wishes.
Just stopping in to hug you and say you are a wonderful mom.

 

[poohbear7]

Sending a big hug.

 

[bookwormde]

An MR diagnosis with ASD is one of those things that has really changed in the last 10 years. This has come about because many ASD individuals have “grown out” of the MR diagnosis over time as the levels of support and understanding about the neurovariant differentials has progressed.

I am sure you have heard my view that it takes more IQ to run an spectrum mind than a NT mind so many individuals with the same IQ who have spectrum genetics have been given an MR diagnosis when if the have NT wiring they would not. As ASD individuals learn to adapt to the NT world that “extra” IQ differential decreases so that is my view of why the MR diagnosis sometimes looses validity. Also IQ tests are socially distorted towards NT since that is the majority of the population.

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.

bookwormde

 

[KirstenB]

Your posts about Madelyn have been a huge help to me in the last 18 mths, since we received a dx for Zoe. You've been very helpful and such a friend. My heart goes out to you.

 

[PatMcDuck]

My son has Autism and Down Syndrome, so he has that MR label of course too. A fair % of kids with DS have autism, or what they call autistic tendencies, so you are certainly not alone. By the time I got the official Autism diagnosis, I already knew. So I was not upset, I wanted it official to help me get more services for Sean. But, if I was not expecting it, I would have been upset of course.

It is a challenge; he has more challenges than the other DS kids for sure. (he is not really verbal).

Hang in there, we understand/

 

[Disneylvr]

Thank you everyone!!! Madelyn is still, for the most part, non-verbal and I think her extreme delay in cognitive development and her lack of progress in the last year is why they added MR to her diagnosis. This assessment was independent of school and was done privately. She does not test well (the non-verbal IQ test) but does much better in the school environment and can identify a few colors, numbers and letters... During the formal testing she did not match anything but their methods were also different than how they are teaching her in school.

Well, today I am going to be happy because in one month we are leaving for Walt Disney World and this time Madelyn's grandma and grandpa are going with us to celebrate her 6th birthday.

 

[mechurchlady]

I would not worry about the label and worry more on her progress in life. Enjoy the tiny steps forward and watch her grow. I wonder if they would label a Hispanic kid MR because he does not speak English. Ask the kid to point to the red ball and the kid stares dumbfounded. Ask the kid where the pelota roja is and the kid will respond.

Good luck on the WDW trip. Send me a dole whip please.

 

[Tissa]

My ds was diagnosed with Autism and MR at about 6 years old too. I cried more over the MR than the Autism for some reason. I remember calling up his teacher and just crying. She told me that it is just a label to help him get more services but it is not who he is. Forget about what he has, focus on what he can do.

That's what I've done and now he's 11. He still has the MR label but I think he is the smartest kid around. Who cares what the tests say. Brandon was also non verbal up until a little over a year ago. I'm still the only one who can really understand what he is saying but he never shuts up now LOL.

You do need to inform the school so the diagnostician can know. They may work it in to her IEP's.

 

[sdarwkcabemanmy]

Baby steps, man. Baby steps and research. That's all you can do.

Ask the kid to point to the red ball and the kid stares dumbfounded. Ask the kid where the pelota roja is and the kid will respond

That cracked me up. At DS's preschool you either have to be special needs OR bilingual in order to be able to attend. So when you're walking down the halls, you're constantly hearing things being said in Spanish, then repeated in English.

On Special Olympics day, I was waiting with DS's class outside the restrooms before they went to the gym and one of the bilingual 4s class was walking down the hall. The teacher was counting with them in Spanish and English and they were able to count quite high (up to 50!) for 4 year olds. I was mighty impressed.

 

[blondietink]

MY DS, now age 18 has Down Syndrome and Autism. Tests in the severe range of MR. He is largely non-verbal, but that is mostly because of low muscle tone. He has an electronic communication device, a Dynavox, that he knows how to get around better than I do. He also memorizes places he visits very well. For example, he goes to a new school and knows how to get from his classroom to the nurses station after just one trip. So, don't think the MR diagnosis is so bad. All children have gifts, they just sometimes come in different packages.

 

[cccdisney]

My 5 1/2 yr old son has a dx of both moderate autism and MR. Quite honestly that MR diagnosis was much much harder to swallow. But I am sure you already know that.
However he was first diagnosed with this at 27 months old! How can anyone tell if a barely two year old has MR? I waited a couple of years and at 4 I took him to see another Developmental Pediatrician who he now sees on a regular basis. She confirmed his diagnosis.
I don't focus on that dx though. The hardest part is wondering when this happened? Was he born with the autism and MR? Just today I came across pictures of him when he was 1 1/2. He was so engaged. It makes me sad. Here he is at a 1 1/2 yrs. There is a picture of him now on the right side of my sig riding the Casey Jr. at DLR. (The other cutie is my 3 yr old!)

 

[Disneylvr]

My 5 1/2 yr old son has a dx of both moderate autism and MR. Quite honestly that MR diagnosis was much much harder to swallow. But I am sure you already know that.
However he was first diagnosed with this at 27 months old! How can anyone tell if a barely two year old has MR? I waited a couple of years and at 4 I took him to see another Developmental Pediatrician who he now sees on a regular basis. She confirmed his diagnosis.
I don't focus on that dx though. The hardest part is wondering when this happened? Was he born with the autism and MR? Just today I came across pictures of him when he was 1 1/2. He was so engaged. It makes me sad. Here he is at a 1 1/2 yrs. There is a picture of him now on the right side of my sig riding the Casey Jr. at DLR. (The other cutie is my 3 yr old!)

[/IMG]

Your boys are beautiful!!!!!

Madelyn was delayed in sitting up, crawling (12 months) and walking (18 months), she was always at the end of the milestone range.... I now wonder if that was a sign of mild MR? The autism symptoms didn't appear until age 22months and the official diagnosis didn't come until age 33 months because our regular pediatrician didn't want to label Madelyn as autistic too early. We too are going to start seeing a development pediatrician and I wish we would have done it sooner! Her original diagnosis was from a pediatric neurologist (the most heartless doctor I have ever met) and her annual assessments have been with a neuropsychologist that specializes in autism and other developmental disabilities.

 

[Schmeck]

Labels are for jars! I really hate diagnoses and labels. We are all special, we all have needs, and it is my dream that one day we all get the support we need (and help others using our own special talents) without going through the mumbo-jumbo garbage of endless testing and techno-babble. As parents, we meet our children's needs every day, and know them the best. The child who just got diagnosed with 'alphabet soupism' is the same child that woke up that morning to go to the specialist appointment. She has the same needs as before. Maybe the diagnosis is needed to get the education system to meet needs, and for the insurance companies to pay for needed services, but that's all it does, in my book. Doesn't change how much you love your baby, how precious she is, or her potential.

So let the specialists suffocate in their logic and babble on about spectrums and get so proud of themselves for their labels. We are the ones who are going to show the world how great every kid can be, no matter if they are labeled "Campbell's Chicken Noodle" or not!

 

[cccdisney]

Labels are for jars! I really hate diagnoses and labels. We are all special, we all have needs, and it is my dream that one day we all get the support we need (and help others using our own special talents) without going through the mumbo-jumbo garbage of endless testing and techno-babble. As parents, we meet our children's needs every day, and know them the best. The child who just got diagnosed with 'alphabet soupism' is the same child that woke up that morning to go to the specialist appointment. She has the same needs as before. Maybe the diagnosis is needed to get the education system to meet needs, and for the insurance companies to pay for needed services, but that's all it does, in my book. Doesn't change how much you love your baby, how precious she is, or her potential.

So let the specialists suffocate in their logic and babble on about spectrums and get so proud of themselves for their labels. We are the ones who are going to show the world how great every kid can be, no matter if they are labeled "Campbell's Chicken Noodle" or not!

Amen!! I couldn't agree with you more.

 

[Disneylvr]

Labels are for jars! I really hate diagnoses and labels. We are all special, we all have needs, and it is my dream that one day we all get the support we need (and help others using our own special talents) without going through the mumbo-jumbo garbage of endless testing and techno-babble. As parents, we meet our children's needs every day, and know them the best. The child who just got diagnosed with 'alphabet soupism' is the same child that woke up that morning to go to the specialist appointment. She has the same needs as before. Maybe the diagnosis is needed to get the education system to meet needs, and for the insurance companies to pay for needed services, but that's all it does, in my book. Doesn't change how much you love your baby, how precious she is, or her potential.

So let the specialists suffocate in their logic and babble on about spectrums and get so proud of themselves for their labels. We are the ones who are going to show the world how great every kid can be, no matter if they are labeled "Campbell's Chicken Noodle" or not!

THANK YOU!!!

 

[cccdisney]

Your boys are beautiful!!!!!

Thank you! I like to think so!

Madelyn was delayed in sitting up, crawling (12 months) and walking (18 months), she was always at the end of the milestone range.... I now wonder if that was a sign of mild MR? The autism symptoms didn't appear until age 22months and the official diagnosis didn't come until age 33 months because our regular pediatrician didn't want to label Madelyn as autistic too early. We too are going to start seeing a development pediatrician and I wish we would have done it sooner! Her original diagnosis was from a pediatric neurologist (the most heartless doctor I have ever met) and her annual assessments have been with a neuropsychologist that specializes in autism and other developmental disabilities.

Jack was never delayed in his motor skills. He was walking at 11 months and became a runner soon after! That is one of our biggest obstacles - he has no fear of danger and just takes off! Our house looks like Fort Knoxx! This is also the biggest reason he is receiving an Autism Service Dog in August! For his safety!

 

[SueM in MN]

Thank you everyone!!! Madelyn is still, for the most part, non-verbal and I think her extreme delay in cognitive development and her lack of progress in the last year is why they added MR to her diagnosis. This assessment was independent of school and was done privately. She does not test well (the non-verbal IQ test) but does much better in the school environment and can identify a few colors, numbers and letters... During the formal testing she did not match anything but their methods were also different than how they are teaching her in school.

Well, today I am going to be happy because in one month we are leaving for Walt Disney World and this time Madelyn's grandma and grandpa are going with us to celebrate her 6th birthday.

Speaking with 23 yrs of experience with a child who is non-verbal and has a Develpmental Disability 'label', there are no very good IQ tests for non-verbal people.

Also, anyone on the autism spectrum or anyone who is on the obsessive side, often does not do very well when the methods are different. To them, the way it is supposed to be is the way it has always been. Even if they know the answer that is supposed to be correct, they may not give it because, to them, it doesn't belong with that way of doing things...........

You got a lot of good advice here.

She told me that it is just a label to help him get more services but it is not who he is. Forget about what he has, focus on what he can do.

I send you big hugs and chocolates and warm wishes.
Just stopping in to hug you and say you are a wonderful mom.

Sending a big hug.

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.

bookwormde

Your posts about Madelyn have been a huge help to me in the last 18 mths, since we received a dx for Zoe. You've been very helpful and such a friend. My heart goes out to you.

Hang in there, we understand/

Baby steps, man. Baby steps and research. That's all you can do.

Quite honestly that MR diagnosis was much much harder to swallow. But I am sure you already know that.

PS - both your DSs are so cute!

Labels are for jars! ........................The child who just got diagnosed with 'alphabet soupism' is the same child that woke up that morning to go to the specialist appointment. She has the same needs as before. Maybe the diagnosis is needed to get the education system to meet needs, and for the insurance companies to pay for needed services, but that's all it does, in my book. Doesn't change how much you love your baby, how precious she is, or her potential.

 

[fausz4]

I knew my son was "different" at 3 years old. It took until he was 10 years old for us to get an official diagnosis (ASD) - and that was only after I suggested the diagnosis....so really I agree with the PPs that a diagnosis only may help you obtain necessary services at school or through your insurance company.

My son is the unique, beautiful child that I love and appreciate. Whatever 'label' someone else puts on him - is no bother to me. Someday (maybe - if they are lucky enough) they will see past the label and see him for who he is. If not - their loss.


Hugs to you!

Disneylvr - I am just outside of St. Louis - about 20 minutes...

 

[LuvsTinker]

(((HUGE HUGS)))

Our recent eval for my 9 yo son with autism broke me down terribly and the dr. didn't tell us anything I didn't already know.

She had to give him the non-verbal IQ because though he can talk, he failed the regular IQ test completely.

His educational scores are all well below average. Even though he wasn't dx with MR, just hearing all those results at once was more than I could handle.

Both of his teachers were so encouraging reminding me how far he has come in the last two years. How better his ability is in class than how he does on tests.

Hang in there, so much can happen over time. Enjoy your trip and have a great time