Confusing late talkers with autism spectrum disorders

[jodifla]

This blog, from the doctor/authors of The Mislabeled Child, goes into details about why so many children who have language disorders are being mislabeled with ASD these days:

(Second one down)

http://eideneurolearningblog.blogspot.com/



excerpt:
Late-talking children often can be distinguished from autism because of their normal affiliative or social drive and social mirroring ability. Their language strengths and weaknesses are also quite different been non-autistic late talking children and autistic late-talking children. Most mistakes are made when children are diagnosed with behavioral checkslists rather than a detailed professional assessments.

Sensory processing behaviors occur in too many diverse groups (late-talking children, dyslexics, preemie birth, autism) to have any specificity in diagnosis.
Problem school behaviors are also non-specific because children struggling to perceive social cues (visual, auditory, or language-based) won't easily be able to resolve conflicts or other social dilemmas with words alone.

Finally, if you are a parent of a young late-talking child, note this advice from Dr. Rescorla and colleagues: "...it may be that todderlhood represents a grace period for many children with language delay, inasmuch as they do not also manifest significant psychological maladjustment. However, as they get older, those who are unable to communicate through language may develop behavior symptoms, such as withdrawal, anxiety, or aggression, or their parents may start to become more aware that their behavior is problematic..."

 

[mechurchlady]

Some very interesting reading there and now I am more confused, lol.

Mom has been on a 24 hour ODD brat attack but really it is not ODD but her hypersensitivity and lack of coping skills. I will have to go poking around that site a bit more later.

hugs and dole whips
Laurie

 

[sdarwkcabemanmy]

Late-talking children often can be distinguished from autism because of their normal affiliative or social drive and social mirroring ability.

This is how DS has always been. He was a late talker, but very social otherwise..loved to be held, talked to, played with, etc. A total social butterfly. When he started school, his language began to greatly increase. Now whether that was due to more ST or him being around other, "normal" preschoolers I have no idea. There are days when I wish I could get him to shut up.

it may be that todderlhood represents a grace period for many children with language delay, inasmuch as they do not also manifest significant psychological maladjustment.

DS seems like any other normal 5 year old with the exception of his language is *not* quite there yet. He has his good days and then there are days that leave me going, "Wait a minute...when did my child get posessed by the Tantrum Demon?" .

 

[KirstenB]

Hi Jodi, you and I have "talked" before.

When Zoe is having a good day, I go back and forth on this issue: sensory processing disorder+ speech delay+ some eccentric behaviors, at what point does it cross over into an ASD diagnosis? Zoe is very snuggly and loving. She is very imitative. She doesn't seem to crave routine or line her toys up, etc.

However, she'll also cross over and do the same repetitive motion 30 times in a row. Like bringing a tea cup back and forth between a footstool and a chair.

I'm still as confused as I ever was. She's in special ed preschool and thriving, so we're very happy with her teachers.

I hope your son Casey (I think that's his name?) is doing well too.

 

[bookwormde]

It is always important to remember that language skills are only one of many characteristics, which might indicate an ASD concern, and no single or even small grouping of characteristics is a good diagnostic criteria.

One thing that is not well understood is that often higher functioning ASD individuals show no familiar social differences (engaged, affectionate etc), it is only when faced with the more complex society social challenges that this characteristic becomes all to evident. Some self adapt so well that you can only tell by having them describe their social thought process and effort.

The good thing is that other than “getting services or treatment” the same process or procedure is used for accommodating the skill needs or sensitivity whether there is a diagnosis or not.

bookwormde

 

[BeckyScott]

I remember a long time ago having a discussion with DH. It went something like this- DS had a speech delay, and gross motor delay, and fine motor delay, and sensory issues, and some "stimming", he had all the signs... and DH said something like well couldn't he just have all those things, and that was what he had. And my reaction was yes, but all those things put together is what makes autism. It's not a terribly scientific answer, but in the context of the conversation it made sense.

 

[LuvsTinker]

I remember a long time ago having a discussion with DH. It went something like this- DS had a speech delay, and gross motor delay, and fine motor delay, and sensory issues, and some "stimming", he had all the signs... and DH said something like well couldn't he just have all those things, and that was what he had. And my reaction was yes, but all those things put together is what makes autism. It's not a terribly scientific answer, but in the context of the conversation it made sense.

Yes, that's the same thing our Dr. told us; when you add all these things together, you have child on the spectrum.

Regarding the article on late talking, that's what the doctors originally thought (more than one of them); my son would smile, interact, and cooperate for the most part with the evaluations; it wasn't until he did start talking more around 4 years, that it became more apparent of his repetitive speech, his obsessions, his inability to keep up with peers his age. He still was not dx with autism at that time. A couple more years went by before we had more evals done that eventually concluded it is Autism.

On one hand I'm thankful he wasn't more severe, on the other hand I wonder if an earlier dx could have gotten him more help when he was younger.

 

[jodifla]

Hi Jodi, you and I have "talked" before.

When Zoe is having a good day, I go back and forth on this issue: sensory processing disorder+ speech delay+ some eccentric behaviors, at what point does it cross over into an ASD diagnosis? Zoe is very snuggly and loving. She is very imitative. She doesn't seem to crave routine or line her toys up, etc.

However, she'll also cross over and do the same repetitive motion 30 times in a row. Like bringing a tea cup back and forth between a footstool and a chair.

I'm still as confused as I ever was. She's in special ed preschool and thriving, so we're very happy with her teachers.

I hope your son Casey (I think that's his name?) is doing well too.

Re: the repetitive issue, lots of preschoolers have that, I think. My son does. If something is fun once, then it's fun 50 times.

But lots of adults do the same thing. My DH will listen to the same song 30 times in a row when DS and I are out of the house.

 

[jodifla]

Yes, that's the same thing our Dr. told us; when you add all these things together, you have child on the spectrum.

Regarding the article on late talking, that's what the doctors originally thought (more than one of them); my son would smile, interact, and cooperate for the most part with the evaluations; it wasn't until he did start talking more around 4 years, that it became more apparent of his repetitive speech, his obsessions, his inability to keep up with peers his age. He still was not dx with autism at that time. A couple more years went by before we had more evals done that eventually concluded it is Autism.

On one hand I'm thankful he wasn't more severe, on the other hand I wonder if an earlier dx could have gotten him more help when he was younger.

Can I ask, what would you have done differently, with an earlier Dx?

My DS has been "in the system" since he was 2. We've treated every symptom, mainly his speech and OT. But we've steadfastly refused to allow him to be Dxed with something we're sure he doesn't have. And the older he gets, the more sure we get. As his language comes in, issues fade away. He of course can't keep up with his peers socially, he's years behind them in receptive language, and has enough auditory processing difficulties that he can't keep up when people are using a lot of langauge fast.

But bring over the Guatamelan kids who are still learning English, and he has great playmates.

The problem with an autism label for my son, beyond even the fact that he doesn't have it, is that it sends people down a TOTALLY wrong treatment path with him, that makes things WORSE. I've witnessed it firsthand...it's like watching somebody speak really loud to a blind person. Uh, that's not the issue.

I'm close to a family with a lot of autistic kids and adults. And what they told me what stands out in their family members is a lack of back and forth conversation, of really being able to relate and connect. They are very smart, great talkers, (Aspergers and HFA) but they really can only be interested in what they are interested in. They are very concrete thinkers...to the point where they can't drive. Or marry. Too much interpreting has to go on.

 

[mechurchlady]

Can I ask, what would you have done differently, with an earlier Dx?

I wsa lost in the cracks as was my mom and see early intervention very important. Knowing that your kid has reasons for doing something is important. For me knowing my mother is hypersensitive means I now know she is not mentally ill but has reasons for her behavior. It is like punishing a kid for not obeying but they cannot hear you .

Hugs everyone and coffee is set for becky
Laurie

 

[bookwormde]

I think that people get “hung up” on the diagnosis issues and also the view that being on the spectrum being a “negative” thing without understanding the “whole package” and all the gifts that come along with it. For those parents of children with other overlaying issues this is hard to appreciate since the impact of the combination is more profound, but the same gifts are there, they are just much harder to recognize and nurture. It is also not helpful to deny the genetic characteristics to avoid the potential of a formal diagnosis since this in no way changes the needs and gifts of a child.

One thing to be careful of is avoiding looking at spectrum individuals who “grew up” (particularly through elementary school) before the last 5 year and drawing inferences to the potential of a young child today, since if the current level of supports and accommodations can be applied early, comprehensively and effectively the level of progress and adaptation are strikingly different and the potential for damaging co morbidities is almost eliminated.

One area that is misunderstood is the repetitive behavior situation. It is important to understand that watching video multiple times or doing substantially similar activities that require extended amount of time that have more to do with a visual non linear mind and Executive Function differential, are not what clinically repetitive behaviors. The items that are indicators of significantly heightened levels of anxiety and are typically self-adaptive calming techniques. Most progressive clinicians will study the frequency and intensity of repetitive behaviors as they relate to underlying anxiety levels to make a “decision” if they are truly an Autism spectrum characteristic.

Jodifa,

If you can get your child all the services and you have fully educated yourself in the HFA/Aspergers end of the spectrum then getting a diagnosis may have little value for your child and may be little more than a “label”. It is very likely that even with the large number of spectrum characteristics he has that if he is a “self adapter” he would never qualify for the current DSM-iv standard. The trick is not to take the view of the past discriminatory and antiquated perception of the autism spectrum and let them bias your efforts to aggressively meeting the needs of your child.

The same supports and accommodations should be provided to your child for specific concerns as are for those with a diagnosis or even those who have the same issues from other causes (such as cultural differentials for social skills). In the area of social skills, your child should be receiving 1on 1 and small group social skills instruction for 2-4 hour per week with program for generalization. If you are getting this without a “classification” (remember this is different from a “diagnosis”) then your child is fine in this area. If you are correct and the social skills deficits are not genetically based he will “catch up” within a few months, if it is genetically based he will be making the progress that is appropriate and he will avoid many of the damaging co morbid manifestations which come with undressed or underdressed social skills deficits. For the auditory processing/EF issues again he should be getting the same support whether it genetic (autism characteristic) or from cognitive damage or any other source, this include enhancing a preferred method of “input” (typically visual), improving the environment and methodology for auditory instruction (single source, extra processing time, high level of repetition etc). Specifically for EF, a support structure need to be developed (adapting higher level system which are used for high school and college NTs seems to work in many cases) have proven useful, such as note cards, digital assistants, and visual cues.

One other important area is to designate the area around your child as an area or special concern for bullying, since the damage from this can be acute whether the differentials are from autism genetics from other causes.

The “wrong treatment” situation only occurs when clinician and educators do not “treat” the child as an individual and just blindly apply what has been “used” on other spectrum children to all children, no competent educator or clinician would do this since in the educational field it is a violation of IDEA and in the medical field it is malpractice.

What you are seeing in the family that you are close, with the HFA/Aspergers individuals is the classic situation which occurs without proper supports and accommodations, if they had received them they would be driving and marrying, even if not on the same schedule as NTs. While it is more challenging to apply these supports and accommodation for adults it still works and would be of great benefit this family.

bookwormde

 

[jodifla]

Thanks bookworme, for your input. Informative as usual.

My point though is that Late Talking and Autism aren't the same. Different things are going on in the brain, the therapy is different, the path is often different. The outcome is often different.

But they present enough alike, especially in younger years, to the untrained eye that many children are being mislabeled these days. And with the wrong label, and the wrong therapy, kids get sent down very wrong paths.

But autism is the "in" diagnosis these days, so that's the label all these kids are getting.

 

[mechurchlady]

jodifla, I agree with you whole heartedly. it is the hot thing to diagnose kids as autistic and right now too many kids are being labeled wrong and not getting proper help. Maybe the President will get around to adding early proper detection for all kids for hearing, vision, dental, medical and for neurovariations and mental health into part of his recovery for America.

 

[bookwormde]

NIH is in the process of developing as an adjunct to the DSM-iv a set to diagnostic procedurals recommendations, I have read the draft versions and when published should go a long way to avoiding both missed diagnosis, incorrect diagnosis and will provide adequate individual analysis to be able to provide the appropriate supports, therapies and accommodations.

bookwormde

 

[sdarwkcabemanmy]

I remember a long time ago having a discussion with DH. It went something like this- DS had a speech delay, and gross motor delay, and fine motor delay, and sensory issues, and some "stimming", he had all the signs... and DH said something like well couldn't he just have all those things, and that was what he had.

When DS was first dx'd with speech delays, some sensory issues and motor delays (both gross and fine), DH didn't want to accept it. He said that DS was just 'a little behind' and that there was nothing wrong with him. Now, he accepts that DS is who he is and there's nothing we can change about that aside from getting him the help he needs.

I think that people get “hung up” on the diagnosis issues and also the view that being on the spectrum being a “negative” thing without understanding the “whole package” and all the gifts that come along with it.

I think you're probably right. Does DS have issues? Yes he does and it took us a long time to accept that, especially DH. It is SO much easier to accept the 'gifts' that come along with it though..he's smart, funny and very popular with his peers (especially those of the female variety ). He may not be the best athlete or the best artist but he makes up for it in other ways.

it is the hot thing to diagnose kids as autistic and right now too many kids are being labeled wrong and not getting proper help

I think it's been that way for awhile now,sadly. Every time I talk to DS's teacher, I keep wondering "Will today be the day she tells me she thinks he's ASD?". So far, so good..in part I think because his teacher has a son who's grown up with the same kinds of issues DS has so she has special understanding of his situation.

 

[LuvsTinker]

Can I ask, what would you have done differently, with an earlier Dx?

Sure you can ask Since the school district orginally dx him with only a speech delay, he did not qualify for OT (which now at age 9, we are still paying for private OT) Later at age 4, they accepted him in the inclusion Pre-K class with a dx of ADHD. But he had no aide.

One glaring thing that still stands out in my mind: his Pre-K teacher telling me around mid-year that she has trouble getting him to go into the cafeteria for lunch. That she has to pratically pick him up off the floor. Little did I know at the time that he was having sensory issues with the loud sound in the cafeteria. (his teacher the following year at another school helped me figure this out by putting ear plugs in his ears when going into the cafeteria)

Another example: a private eval with pysch. who I specifically told that my son is having trouble answering questions that I know he knows the answer to. That sometimes he just looks at me and can't answer. She tells me that it is probably because he has no motivation to answer me! No suggestion of processing or auditory disorders. Again, I had to research and find this out on my own over time.

And not all speech therapist are created equally. Another few years wasted to figure that out.

So I believe what we would have done differently was understood his sensory issues, provided OT earlier, and provided more intense speech and language therapy sooner, along with social skills therapy.

At our recent private eval, he most definitely fit the current DSM-iv requirements. The pysch did mention the requirements could change in a few years and maybe he wouldn't meet the requirements then. But her bottom line to us is that whether he fits the book's requirements or not, he still functions like he's on the spectrum and all we can do is continue to provide him with therapy and the best educational setting that we can.

So at this point, there is nothing different to do. We already are paying for OT, SLP, and have him in a good private school specifically for learning differences. With the dx now, we can go forward with planning for the future, if he should need the assistance of the state, group home living, etc. Only time will tell.

 

[jodifla]

I'm sorry your son didn't get what you feel are the right services earlier. If he has an OT delay now, why won't they give him that at school.

We were able to get OT, speech, social group and resource room pullouts without an autism label. Because he had enough delay in the areas, he qualified. We have been told that the label should not drive the services, individual issues should drive the services.

On our end, once we took him to a qualified clinician who could document how far his receptive language was behind and that it was not autism, everything fell into place for us at home. School is still a struggle, but this year is better than last. The school personnel seem intrigued, even though he doesn't fit nicely into any of their little boxes.

 

[LuvsTinker]

I'm sorry your son didn't get what you feel are the right services earlier. If he has an OT delay now, why won't they give him that at school.

Because we longer have him in a public school. When we switched him to a private school after the year he was in the public school inclusion Pre-K class, they stopped his speech and adaptive PE services because according to them, we were sending him to a school that wouldn't follow their IEP.

The public schools here have such a bad reputation for kids that are more borderline special needs, that it just isn't worth us fighting the SD or jeopardizing our son's education. So we pay for private school, OT and speech/language therapy.

I believe the problem earlier on was that my son didn't fit nicely into any of their little boxes either. All these professionals just kept telling us that he has a speech delay causing an overall developmental delay. But it was obvious to us something else was going on. I did keep wishing it would eventually all go away and he would just catch up. But, then more things started becoming apparent: his struggles with understand "Wh" questions, and not using proper pro-nouns, interchanging words like saying lock instead of key, or rain instead of umbrella, having trouble socializing with kids his age, etc.

At least now, it's less of a guessing game for us. I understand now why he thinks differently, does things differently, marches to the beat of his own drum. He does make us laugh - he's quite comical and full of surprises.

 

[sdarwkcabemanmy]

I did keep wishing it would eventually all go away and he would just catch up.

I think a lot of parents (myself included at times) feel that way. There have been days when I sat down, beat my fists on the floor and cried because I just want him to be *bleeping* normal.

But then the more rational part of me says, "But if he were NORMAL, he might not have the same personality." and that's something I wouldn't trade for the world.

I understand now why he thinks differently, does things differently, marches to the beat of his own drum. He does make us laugh - he's quite comical and full of surprises.

Love it.
I had to go to the hospital last week for emergency gall bladder surgery at 2 am and unfortunately, we had to drag DS with us. I somehow (despite the pain I was in) managed to grab two of his favorite toy cars and stuck them in my bag, so he'd have something to keep him occupied.

At one point, I was waiting for the surgeon to come back and tell me whether or not I would need surgery. DS was playing with his cars and I heard him say "Ok..you have owies now." and he made the other car say "Ow ow! My tummy hurts!" Then he took the first car and made it say "You goin' to teh hopsicle. The docker make you all better. Fissa fissa fissa fissa! All better!"
I bit my lip and tried not to laugh, it was that funny.

 

[LuvsTinker]

But then the more rational part of me says, "But if he were NORMAL, he might not have the same personality." and that's something I wouldn't trade for the world.

At one point, I was waiting for the surgeon to come back and tell me whether or not I would need surgery. DS was playing with his cars and I heard him say "Ok..you have owies now." and he made the other car say "Ow ow! My tummy hurts!" Then he took the first car and made it say "You goin' to teh hopsicle. The docker make you all better. Fissa fissa fissa fissa! All better!"
I bit my lip and tried not to laugh, it was that funny.

Yes, I know the feeling of not wanting his personality to change.

Very cute story