question for parents of children with autism

jodifla

WDW lover since 1972
Joined
Jan 19, 2002
My son was given his PDD-NOS diagnoses through 2 different sets of evaluations and by a neurologist.

From what was explained to me about PDD-NOS is that it is a spectrum disorder but isn't autism per se. Also from what my neurologist told me is they won't put a defined autism,asperger's or ADHD until he is 5 or 6. hence his PDD-NOS diagnosis which is an ASD but this can change as he gets older. He is just 3.

Besides his speech problems he has a slew of other problems that put him on the spectrum. He is a toewalker and has a problem with his fine motor skills. When he started with school he could not attend (as in he had not attention) he did not respond to his name, he did not look at people and he could not point at things with his pointer finger. Now he can do all of those most of the time.

My son loves to give hugs and hold hands which is one of the reasons I said he did not have a social problem.

My son would be eligible for services and special ed preschool in NYC for no other reason than his severe speech delay.

One way the PDD-NOS was explained to me in the beginning is you needed 12 traits to be considered truly autistic and the PDD-NOS diagnosis had less than the 12.

I am still learning all the terms and more about ASD, PDD-NOS and it all.
Have you ever heard of MERLD (Mixed Expressive Receptive Language Disorder)? MERLD kids have a lot of problems attending because their receptive language is so poor; they often have behavior problems because of this as well. They can look ADHD as well....some have great fine motor skills, others don't.
 

cogero

DIS Veteran
Joined
Jun 11, 2008
Have you ever heard of MERLD (Mixed Expressive Receptive Language Disorder)? MERLD kids have a lot of problems attending because their receptive language is so poor; they often have behavior problems because of this as well. They can look ADHD as well....some have great fine motor skills, others don't.
I have heard of it.Not sure if it would apply to my son because his receptive language is fabulous.

When I started with EI I was blown over with the PDD dx there are some things he does that I agree 100% with the diagnosis and then there are times when I think it is totally off.

I do believe he has a sensory processing disorder and I am starting to read about those. He thrives on deep pressure and massage.

I know I will have to keep pushing for the right diagnosis and it is all learning and no 2 kids on the spectrum are the same.
 

sukhakuli

<font color=darkorchid>I guess I'm funny like that
Joined
Mar 8, 2005
My son was given his PDD-NOS diagnoses through 2 different sets of evaluations and by a neurologist.

From what was explained to me about PDD-NOS is that it is a spectrum disorder but isn't autism per se. Also from what my neurologist told me is they won't put a defined autism,asperger's or ADHD until he is 5 or 6. hence his PDD-NOS diagnosis which is an ASD but this can change as he gets older. He is just 3.

Besides his speech problems he has a slew of other problems that put him on the spectrum. He is a toewalker and has a problem with his fine motor skills. When he started with school he could not attend (as in he had not attention) he did not respond to his name, he did not look at people and he could not point at things with his pointer finger. Now he can do all of those most of the time.

My son loves to give hugs and hold hands which is one of the reasons I said he did not have a social problem.

My son would be eligible for services and special ed preschool in NYC for no other reason than his severe speech delay.

One way the PDD-NOS was explained to me in the beginning is you needed 12 traits to be considered truly autistic and the PDD-NOS diagnosis had less than the 12.

I am still learning all the terms and more about ASD, PDD-NOS and it all.
IMO you should talk to a Pediatric Developmentalist, and not a neurologist. What you have been told about the age for autism diagnosis is incorrect.

None of us can tell you if your son had PDD-NOS or not, but some things you have said make it less likely, just from your posts. I haven't seen your kid, so I don't have a clue, but the good receptive language and so on makes me think that he has had hearing problems in the past, and now that they are corrected he is learning appropriate speech. Has he taken the Bailey?

FWIW, my son also loved to give hugs (it's a sensory thing), and he did point, but he never looked at us to see if we saw it, too. Choosing a couple of typical behaviors to define autism isn't really appropriate. Like, they say that kids will sit and spin wheels on cars, and since my ds didn't do that he must not have autism. But instead he would drive his cars back and forth at eye level. He's getting the same stim, but in a different way. And they'd see him "playing" with his cars, but what they didn't notice is that he had a complex pattern he drove them in over and over, and the entire pattern took nearly an hour to complete. So, watching him for 5 minutes it looked like he was playing with his cars, but he was doing a very complex patterning behavior. Honestly, his behaviors were so incredibly planned out and thought out that it would fool most people watching him, unless you saw it over and over, like I did. Then once they figured it out, it was like it blew their mind that a 2 year old could plan something out that would take over an hour to complete, and then he'd do it again. and again.
 
  • cogero

    DIS Veteran
    Joined
    Jun 11, 2008
    None of us can tell you if your son had PDD-NOS or not, but some things you have said make it less likely, just from your posts. I haven't seen your kid, so I don't have a clue, but the good receptive language and so on makes me think that he has had hearing problems in the past, and now that they are corrected he is learning appropriate speech. Has he taken the Bailey?
    He had tubes put in his ears in June of 2010. We also did hearing tests and his hearing is at 100%. Since that time his receptive language has moved forward. He is finally babbling and trying to move his mouth more to make sounds which is a new development. He still has only about 20 words that a stranger could understand, though I sometimes think I hear more. I tend to see everything thru rosecolored glasses.

    The Bailey scale is what they used for his last set of evaluations. I do know that PDD-NOS and autism are the hot button topic and that if you have the diagnosis,you get services. We are on a waiting list to see a developmental pediatritian who was recommended to us. I am just happy to see my son trying to communicate with me more with what he is learning in school.

    Just wanted to thank everyone for the other things to look at. Going to do more reading on other disorders too.
     

    stacy347

    I carried a watermelon?
    Joined
    Mar 8, 2005
    First he went for his hearing test and failed it spectacularly. The auidiologist said that her gut feeling was that he could hear, and she was puzzled why he failed (he did end up "passing" later). We scheduled another appointment.
    Wow, I went through the same thing with my DD. When we went for the test with the audiologist, she didn't appear to hear anything at all. I was in tears thinking she was deaf, because they had me in the testing room with her and even with headphones on, it was so loud I could barely stand it. I didn't think there was any way she could have just "blocked out" noise at that decibal.

    From there they sent her for a brain stem eval, and that showed that there was no hearing loss whatsoever. I was floored! To this day it still boggles my mind how much she could just shut out.
     

    jodifla

    WDW lover since 1972
    Joined
    Jan 19, 2002
    I have heard of it.Not sure if it would apply to my son because his receptive language is fabulous.

    When I started with EI I was blown over with the PDD dx there are some things he does that I agree 100% with the diagnosis and then there are times when I think it is totally off.

    I do believe he has a sensory processing disorder and I am starting to read about those. He thrives on deep pressure and massage.

    I know I will have to keep pushing for the right diagnosis and it is all learning and no 2 kids on the spectrum are the same.
    If his receptive language is on target, you are right, it wouldn't be MERLD. There's also an Expressive Language Disorder in the DSM you might look at.

    A really fabulous book is The Mislabeled Child by Drs. Brock and Fernadette Eide. She's a pediatric neurologist and he's an internist. It goes through all the childhood disorders, and talks about symptoms, possible treatments, and then why one disorder might be mistaken for another. It's probably in your library; I know ours has it.
     

    sukhakuli

    <font color=darkorchid>I guess I'm funny like that
    Joined
    Mar 8, 2005
    Wow, I went through the same thing with my DD. When we went for the test with the audiologist, she didn't appear to hear anything at all. I was in tears thinking she was deaf, because they had me in the testing room with her and even with headphones on, it was so loud I could barely stand it. I didn't think there was any way she could have just "blocked out" noise at that decibal.

    From there they sent her for a brain stem eval, and that showed that there was no hearing loss whatsoever. I was floored! To this day it still boggles my mind how much she could just shut out.
    It's crazy, isn't it? My ds was just so completely unresponsive that he didn't move a muscle during the test. He was like that at home. Even in a room full of people talking to him and playing with him it was like he was alone. He never responded to anything.

    We opted not to do the sedated sleep test because of the risks of general anesthesia, and we waited and did another booth test a few months later. This time he responded some, but since the first time the sound was on the left, he turned his head to the left every time. We decided just to let it go. by this time he was diagnosed with autism, and it was clear he could hear. I wasn't going to put his life at risk just to be sure. Now he's over 5 and I feel this was the right choice. His ears function normally, and he has passed all hearing screenings, aside from a booth test and I think that is because of his neurological disorder, and not because he can't hear. He talks fairly normally now. He has articulation issues, but not beyond what you'd expect out of a kid who has only been talking for about a year and a half. His sentence structure is pretty normal. He does have trouble with recall, which is why he is failing Kindergarten, and his echolalia is still present and fairly severe. He has this really long song he sings that is this weird combo of the Imperial March and a Spoonful of Sugar. He starts shouting it out when he's stressed out. We have a rule that he can repeat something 3 times, and then after that he can say it in his head, or to himself quietly, and that has lessened some of the constant repetition.
     
  • Melisande

    Mouseketeer
    Joined
    Aug 22, 2010
    When she was two she started doing some very OCD things that were typical of Autistic kids like everything had to be lined up perfectly in linear order. I always knew she was sensory like her Dad and I.

    One of the things that delayed her diagnosis was that she was the typical child in a special needs preschool class. Yeah no one saw the autism in her and when they did they just figured she was copycatting.

    Come second grade though she had been in public school for a few years at which point there was no one to copy cat. Well the meltdowns started (especially on the bus). Three separate staff members went to the guidance counselor to see what he thought about her being tested for it. At first they said she was most likely Autistic but would not label her until certain. Her Dad and I ended up in divorce. He went to disprove her being autistic only to prove it after extensive testing.

    Sometimes I think her Dad is a little bit more Autistic than ADHD which is his diagnosis. I say this just because the man can do stuff for 8 hours straight. Really boring tedius stuff. He is not really hyper but he does Stim. Obviously I am not trained to diagnose him but I know the difference between the two conditions and I lived with the man for like 9 years. Sheesh how did I do it LOL.
     

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