Confusing late talkers with autism spectrum disorders

[bonybroad]

apraxia-kids.org
This will give you some insight on "late talkers."
Sometimes, it's not just LATE, that train isn't coming without a conducter.
Many times apraxia goes with OT and PT, fine motor is compromised, and many times gross motor.
I hope this helps someone.
Having the diagnosis didn't help or hurt us. It just gave us some piece of mind. (And got my MIL off my back )

 

[Brightsy]

My son has dysparxia along w/ his autism. I can't tell you how much I was hoping it was "just" a speech problem when we were going through the diagnosis process.

 

[LuvsTinker]

My son has dysparxia along w/ his autism. I can't tell you how much I was hoping it was "just" a speech problem when we were going through the diagnosis process.

I know that feeling of hoping it was just a speech delay

 

[sdarwkcabemanmy]

Thanks, LuvsTinker.
He certainely does keep us entertained, that's for certain. Besides..normal is boring. Who wants to be normal?

 

[GraceLuvsWDW]

My DD5 also was a late talker. She had zero works until she was two and a half. They continually evaluated her for Autism and always said, she's making eye contact, she shows imaginative play, she's ok. As she grew older her Pedi referred us to a Child Psych who spent 6 months with her in play therapy. He concluded there was "something" off and referred us to a Developmental Pediatric Specialist which we had to wait 9 months for an initial appt. At the initial appt she suspected Autism and referred us to an Autism specialist who did three two hour evaluations of my DD. After those evals, the specialist said no Autism, and they diagnosed her with GAD, SPD, Developmental Coordination Disorder, and congenital encepalopothy (or a mild brain impairment). Since then, she has been in OT, child play therapy, behavioral therapy, on Paxil and has now been put on Focalin. The anxiety attacks, strange repetitive behaviors, and now aggression persist. The OT thinks it is spectrum related but the specialist would know better. I guess I am just writing this here because you guys seem to have a lot of the same experience. I am so confused about what all of this leads to? Or if it leads to anything? My DD has trouble in school, I am going to have her repeat Kinder but we get no help from school administrators. They say they know best what she needs?

Anyway, just venting. Hoping to find some people going through the same things that could shed some light. I have been going down this path for 2 years now and I am discouraged with the Meds they put her on that seem to help a little then just lead to further weird symptoms down the road.

VERY frustrated here! But going to WDW tomorrow and that is our escape, a place where we can be happy and forget out troubles. I am going to get a GAC fo the first time on this trip. Hoping all goes well!

 

[bookwormde]

What you are facing is unfortunately all too common. There are lots of clinicians who purport to be autism experts, who have not kept up with the current “state of the art” which is especially important for females.

Getting an alphabet soup diagnosis is almost always an indication that the clinician(s) you are using are not competent and current in the area of Autism spectrum.

The best you can do is educating yourself (Tony Attwood’s book The complete guide to Aspergers C2007 the best starting point for parents of children in the middle to upper end of the spectrum).

After that “go with you gut” and if needed keep searching until you find a competent group of clinicians, and always be cautious about any clinician who claims to be an “expert” who is not published and respected by international autism clinical community.

The deterioration you are seeing in manifestation is very typical for individuals who have not been properly diagnosed, allowing them to receive the proper supports (before pharmaceuticals are considered).

bookwormde

 

[GraceLuvsWDW]

bookwormde,

you speak with such knowledge, are you in the profession? Just wondering. I am so confused with the medications they recommend. I feel like I am at their mercy, do what they say or find another Dr. And this Developmental Pedi is supposed to be highly recommended. Her OT suggested a Neuro Psychologist or any type of Neuro workup. I avoided the Focalin (ADHD meds) for a very long time but my daughters inability to sit still, pay attention or even look at me while I am talking to her made me sway to their side and give it a try. We have been on it for a week now and while I do see improvement while she is ON the med, when she comes "down" from it, her behavior seems way worse than before she was ever taking that med at all. Confusing! I read the book Understanding Girls with AD/HD, which her Pedi recommended and to tell you the truth, she does fit so much of the Combined Type description. But she also has other symptoms that are outside of it, the most disturbing of which is her extreme anxiety attacks. She absolutely freaks when I leave her sight which is her big problem with school. She just doesn't ever feel comfortable when she is away from me, as if I am her comfort blanket. Anyway gotta go get some sleep!

Any help you could be bookwormde would be welcome!

 

[jodifla]

What you are facing is unfortunately all too common. There are lots of clinicians who purport to be autism experts, who have not kept up with the current “state of the art” which is especially important for females.

Getting an alphabet soup diagnosis is almost always an indication that the clinician(s) you are using are not competent and current in the area of Autism spectrum.

The best you can do is educating yourself (Tony Attwood’s book The complete guide to Aspergers C2007 the best starting point for parents of children in the middle to upper end of the spectrum).

After that “go with you gut” and if needed keep searching until you find a competent group of clinicians, and always be cautious about any clinician who claims to be an “expert” who is not published and respected by international autism clinical community.

The deterioration you are seeing in manifestation is very typical for individuals who have not been properly diagnosed, allowing them to receive the proper supports (before pharmaceuticals are considered).

bookwormde

Everything isn't autism!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Do you ONLY believe Tony Attwood?

IMO, and I know we disagree on this, the autism spectrum is a worthless diagnosis that currently clinically doesn't even exist. You cannot know how many families this stupid label is wrecking.....because the kids have something else!

Best to find out EXACTLY what is going on instead of some broad spectrum that pretty much includes everybody.


ARGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

[jodifla]

bookwormde,

you speak with such knowledge, are you in the profession? Just wondering. I am so confused with the medications they recommend. I feel like I am at their mercy, do what they say or find another Dr. And this Developmental Pedi is supposed to be highly recommended. Her OT suggested a Neuro Psychologist or any type of Neuro workup. I avoided the Focalin (ADHD meds) for a very long time but my daughters inability to sit still, pay attention or even look at me while I am talking to her made me sway to their side and give it a try. We have been on it for a week now and while I do see improvement while she is ON the med, when she comes "down" from it, her behavior seems way worse than before she was ever taking that med at all. Confusing! I read the book Understanding Girls with AD/HD, which her Pedi recommended and to tell you the truth, she does fit so much of the Combined Type description. But she also has other symptoms that are outside of it, the most disturbing of which is her extreme anxiety attacks. She absolutely freaks when I leave her sight which is her big problem with school. She just doesn't ever feel comfortable when she is away from me, as if I am her comfort blanket. Anyway gotta go get some sleep!

Any help you could be bookwormde would be welcome!

Well, I'm not bookwormde, but I'll chime in:

I'm finding in all my talks with other parents that many children with any kind of disability tend to be anxious. My son sure is. For him it manifests itself with running around a lot. He's not ADHD, though: he can sit and focus a long time on something he's interested in and UNDERSTANDS.

That's the a key point for a lot of kids: Once they don't understand something, whether due to cognitive or visual or auditory issues, the behaviors tend to set it. So then it looks like something it's not.

I was at the SLP office on Monday and one of the moms just told me they were switching from OT to vision therapy. Turns out , after hours of testing, they realize her son's eyes don't focus correctly. So, he can't understand the schoolwork he's looking at, and being a 1st grader, he gets antsy and behaviors kick in.

Have you had a functional behavior analysis done? Those are supposed to be extremely effective in pinpointing behaviors and what precedes them so you can extinguish the unwanted behaviors.

I also suggest googling around on The Mislabeled Child. They have quite a lot of the book posted on some Web sites, and it's fascinating to read how/why so many kids are misdiagnosed. They go through each disability, and talk about why kids are often mislabeled with that particular issue and what to look for.

 

[bookwormde]

Jodifa,

Yes you are correct that not everything is Autism spectrum related, but once you get multiple characteristics evident it is important to get a high quality evaluation, even if there is no formal diagnosis many of the characteristics can be managed by the same or slightly modified therapies and supports (again individualized and done “well”). We will only really know for sure once the genetic mapping is done.

I agree the label only has value for insurance companies and governments; qualified clinicians look at the individual characteristics and individualize therapies and accommodations for each child, poorly trained clinicians who use a “blanket approach” are the ones, which cause “damage to families”. I think we disagree much less than you think. In many cases it is not so much being mislabeled but more of using the diagnosis to broadly (and not using the recognition of individual characteristics without a diagnosis) with extremely poor individualization and application of clinical practice.


GraceLuvesWDW,

I am just an Aspie from a long line of aspies who has taken the time to become well read and has taken courses by major clinicians in the area (1000’s of hours by my current count). I have had the opportunity to work with other families both in support groups and online to both the benefit of my DS9 Aseprgers and their children also.

I do have the “inside track” of having a spectrum mind, and even though intellectual specialties and capabilities and social self-adatption kept me from developing the maladaptive manifestations, which are seen in many of our children, I still face the exact same challenges and extra work, day to day that they do.

Yes it is very frustrating, and we all need to vent occasionally. It is my experience that only about 10% of clinician who attempt to work with or diagnosis children for autism characteristics are highly qualified. The rest are marginally competent to outright daily performing gross malpractice.

bill

 

[LuvsTinker]

My DD5 also was a late talker. She had zero works until she was two and a half. They continually evaluated her for Autism and always said, she's making eye contact, she shows imaginative play, she's ok. As she grew older her Pedi referred us to a Child Psych who spent 6 months with her in play therapy. He concluded there was "something" off and referred us to a Developmental Pediatric Specialist which we had to wait 9 months for an initial appt. At the initial appt she suspected Autism and referred us to an Autism specialist who did three two hour evaluations of my DD. After those evals, the specialist said no Autism, and they diagnosed her with GAD, SPD, Developmental Coordination Disorder, and congenital encepalopothy (or a mild brain impairment). Since then, she has been in OT, child play therapy, behavioral therapy, on Paxil and has now been put on Focalin. The anxiety attacks, strange repetitive behaviors, and now aggression persist. The OT thinks it is spectrum related but the specialist would know better. I guess I am just writing this here because you guys seem to have a lot of the same experience. I am so confused about what all of this leads to? Or if it leads to anything? My DD has trouble in school, I am going to have her repeat Kinder but we get no help from school administrators. They say they know best what she needs?

Anyway, just venting. Hoping to find some people going through the same things that could shed some light. I have been going down this path for 2 years now and I am discouraged with the Meds they put her on that seem to help a little then just lead to further weird symptoms down the road.

VERY frustrated here! But going to WDW tomorrow and that is our escape, a place where we can be happy and forget out troubles. I am going to get a GAC fo the first time on this trip. Hoping all goes well!

Yes, we've been your shoes. Unfortunately, not all professionals can give you a definitive answer.

On the topic of meds: I didn't think I would resort to meds for my son, but finally did at age 6 to try to help his focus; then a year later his anxiety got so bad we tried Zoloft which did help. Then his behavior got so bad hitting and breakdowns, we finally tried Risperdal. He's been on Risperdal for 1 1/2 years now and there has been a BIG improvement. I do hope to cut back on the drug as he matures (he's 9 now). We had also tried Focalin initially but my son did not do well on it.

On the topic of a label: Nobody wants their child labeled! I don't buy into Autism being the new hot label that parents want their child to have. That is absurd!

I'll tell you what our Dr. told us when we were going thru evaluations and couldn't get any answers: one person can say he has a language delay, another can say he has attention problems, another can say he has sensory issues, another can say he has motor skills delays, another can say....... (you get the idea), but it comes down to putting all these things together and making a determination that the child is on the spectrum.

The spectrum is extremely broad - it has become a catch all, but I believe that is because parents want answers to help their child and doctors can't give all the answers.

We have gotten a dx. of autism now at age 9. No surprise, we were not told anything that we didn't already know. We were not enlightened in any way. We did not have any closure or satisfaction from it. It is just what it is. We will not now do anything different from what were are already doing. BUT, it was a long and hard road getting to where we are now.

If there is any advice I can give you it is to take action with your daughter by getting her the speech and language therapy she needs. If she needs OT, get that also. Search for proper school settings to fit her needs. (when people or doctors would tell me that a few years ago, I didn't know what in the world they meant by the "right school") We did find the right school eventually - it is a private school; low student/teacher ratio; very hands on teaching, the school allows all private therapists to come on premises, they allow student aids/shadows, they allow the kids time to chill if the class gets overwelming. Kids with attention decifits and learning differences need that low ratio and time to be able to chilll out if necessary.

I know from experience none of this is as easy as me just saying it.

Good Luck to you and big hugs.

 

[GraceLuvsWDW]

Yes, we've been your shoes. Unfortunately, not all professionals can give you a definitive answer.

On the topic of meds: I didn't think I would resort to meds for my son, but finally did at age 6 to try to help his focus; then a year later his anxiety got so bad we tried Zoloft which did help. Then his behavior got so bad hitting and breakdowns, we finally tried Risperdal. He's been on Risperdal for 1 1/2 years now and there has been a BIG improvement. I do hope to cut back on the drug as he matures (he's 9 now). We had also tried Focalin initially but my son did not do well on it.

On the topic of a label: Nobody wants their child labeled! I don't buy into Autism being the new hot label that parents want their child to have. That is absurd!

I'll tell you what our Dr. told us when we were going thru evaluations and couldn't get any answers: one person can say he has a language delay, another can say he has attention problems, another can say he has sensory issues, another can say he has motor skills delays, another can say....... (you get the idea), but it comes down to putting all these things together and making a determination that the child is on the spectrum.

The spectrum is extremely broad - it has become a catch all, but I believe that is because parents want answers to help their child and doctors can't give all the answers.

We have gotten a dx. of autism now at age 9. No surprise, we were not told anything that we didn't already know. We were not enlightened in any way. We did not have any closure or satisfaction from it. It is just what it is. We will not now do anything different from what were are already doing. BUT, it was a long and hard road getting to where we are now.

If there is any advice I can give you it is to take action with your daughter by getting her the speech and language therapy she needs. If she needs OT, get that also. Search for proper school settings to fit her needs. (when people or doctors would tell me that a few years ago, I didn't know what in the world they meant by the "right school") We did find the right school eventually - it is a private school; low student/teacher ratio; very hands on teaching, the school allows all private therapists to come on premises, they allow student aids/shadows, they allow the kids time to chill if the class gets overwelming. Kids with attention decifits and learning differences need that low ratio and time to be able to chilll out if necessary.

I know from experience none of this is as easy as me just saying it.

Good Luck to you and big hugs.

LuvsTinker,

Thanks so much for your response. You are right, I am learning that perhaps there is no definite "answer" to what is "different" about her. I do everything the specialists tell me to do-OT, speech evals, autism evals, medications, behavior therapy, etc. I keep wanting improvement and while I'll see improvement in one area it seems another "issue" pops right up. Like we're on an endless chasing of our tails here! It is amazing to me that there is effective treatment for just about anything these days and yet when it comes to these developmental disorders they treat the symptoms until they see improvement. There's no addressing of what might be the underlying problem and what will cure it?

We just got back from WDW and I got a GAC card. It did help us tremendously, the trip was 1000% better than any others because my daughter was much less overwhelmed and tired. Thank you all so much for that recommendation. I did have to talk to my daughter as she wanted to know why she was being treated "differently" by using alternate entrances, etc. but I just explained that Mickey cared enough that she had a good time and didn't want her to get overwhelmed and tired. She seemed to understand that. I did get the occassional stares from others when we had her stroller in the queues and that seemed to bother my daughter but I just got over it and thanked God we had the help.

I guess I ned to get over the idea that she will be "cured" with a treatment or a drug. That is very disheartening to me. I have much sadness over her disability, sometimes she is absolutely debilitated and in a terrible panic over that which wouldn't alarm others.

Bookwormde,

Thanks so much for your help also. It helps to hear from those who have walked a mile in my daughter's shoes. Maybe none of the shoes of the children are the "same" but we all seem to be experiencing comparable issues. Is anyone doing any kind of research on what is causing this "outbreak" of disabilities in our children? Do you recommend a Neuro workup? Supposedly those involve MRI's or brain scans that pinpoint the exact part of the brain that is malfunctioning. I don't know if it worth it as I spent over $6000 last year on my daughter's therapies and treatment and want to focus on that which would really help her.

As far as the proper school setting, I have had her in a small private school and they just cannot deal with her issues with their limited resources. Also, it has been suggested to me that she needs more structure than a "montessori" type school delivers. So I am looking at putting her in the public schools and asking for the experienced teacher that can deal with her issues. I just hope they can give her certain allowances for her anxiety.

Thanks to everyone for your help, I greatly appreciate it. Anyone have any success in treating the anxiety? We are on Paxil and while it helped for a while it sems the anxieties are returning worse than before. Her Dev. Pedi advises me to keep her away from any and all new situations. This doesn't seem right or even feasible? Any experience with this? I give her chewy necklaces that help her channel her anxiety but would appreciate any other ideas.

Thanks!

 

[bookwormde]

While neuro scans may show some situation other than autism genetics, only active scans (where different stimuli and situations are presented) have shown any processing area differentials in individuals with autism and these are in the very early investigative phases. If you had a medical center, which was doing these as part, of research it might be worth considering joining the study, but otherwise I think it is 3-7 year out before they are part of clinical practice.

While I make judgments as to situations that I will expose my DS to I do not think the doctors advice is practical or possibly in the long run even appropriate. I find it more important to monitor the level of anxiety (which I have found easier as time goes along, although I am not sure if it is from the higher maturity level of DS or my being more “tuned in”, probably both) and “escape” when the situation is causing serious issues and allow adequate decompression time before exposing him to any other stressors.

If you are considering moving to public schools have them start the process now so you will have a robust and effective IEP in place for day 1, preferably with an experienced paraprofessional 1 on 1 which is actually more important than the teacher as long as the teacher follows the IEP and is reasonably well educated in neurovaritations. You can always change your mind and keep her is a private placement. I would expect that she will likely end up with an Autism/HFA/Aspergers/PDD-nos educational classification (which is different from a medical diagnosis) which opens up an array of supports that would be appropriate as long as they are individualize for her.

It always amazes me when I hear that parents are told by clinicians that if a child makes eye contact or does interactive play that they are not on the spectrum, this was a standard from the 80s and 90s which is broadly discredited with individuals in the upper half of the spectrum especially in females. Unfortunately only a small percentage of clinicians who purport to do autism evaluations are following the new draft guidelines which would end this “silliness”.

bookwormde

 

[LuvsTinker]

It always amazes me when I hear that parents are told by clinicians that if a child makes eye contact or does interactive play that they are not on the spectrum, this was a standard from the 80s and 90s which is broadly discredited with individuals in the upper half of the spectrum especially in females. Unfortunately only a small percentage of clinicians who purport to do autism evaluations are following the new draft guidelines which would end this “silliness”.
bookwormde

Thank You!

That is probably the main part of the reason my son was not dx 5 years ago, because he could make eye contact and interact!

We were told the same thing by a neuro just a few months ago! This Dr. was clueless.

 

[jodifla]

W





It always amazes me when I hear that parents are told by clinicians that if a child makes eye contact or does interactive play that they are not on the spectrum, this was a standard from the 80s and 90s which is broadly discredited with individuals in the upper half of the spectrum especially in females. Unfortunately only a small percentage of clinicians who purport to do autism evaluations are following the new draft guidelines which would end this “silliness”.

bookwormde

Tests like the CARS and ADOS are actually nationally re-calibrated on a regular basis and those doing assessing are SUPPOSED to go through regular training to make sure they are following proper procedures, but it seems that many of them do not.

 

[GraceLuvsWDW]

My DD took the ADOS, that is the one they said she was not on the spectrum???? That is why I am so confused by all of this. I was ecstatic when I found out she didn't fall in the spectrum on the ADOS but now I am left with what bookwormde calls "alphabet soup" and no one to say what definitely will help her. They are just stabbing in the dark. And the Dev. Pedi that was SO HARD to get into (who is high up in Any Baby Can here) basically will see us once every 6 months and does nothing but adjust her meds (and charge me $550 for the visit)!!!


Also, I did go to the public school at the advice of our OT and the principal told me they do not initiate any 504 or IEP's until school starts and the techer discovers a problem. How do I reply to this? I thought of taking all of her medical test records to the school??? Any recommendations? I asked them to put her in social skills group and they agreed but that's about all they will do. This school is rated "exemplary" but we are in a small town with people who are probably not too familiar with these issues.

Thanks!

 

[jodifla]

My DD took the ADOS, that is the one they said she was not on the spectrum???? That is why I am so confused by all of this. I was ecstatic when I found out she didn't fall in the spectrum on the ADOS but now I am left with what bookwormde calls "alphabet soup" and no one to say what definitely will help her. They are just stabbing in the dark. And the Dev. Pedi that was SO HARD to get into (who is high up in Any Baby Can here) basically will see us once every 6 months and does nothing but adjust her meds (and charge me $550 for the visit)!!!


Also, I did go to the public school at the advice of our OT and the principal told me they do not initiate any 504 or IEP's until school starts and the techer discovers a problem. How do I reply to this? I thought of taking all of her medical test records to the school??? Any recommendations? I asked them to put her in social skills group and they agreed but that's about all they will do. This school is rated "exemplary" but we are in a small town with people who are probably not too familiar with these issues.

Thanks!

How old is she now??

 

[GraceLuvsWDW]

How old is she now??

She will be 6 in June. She has had disciplinary problems in the private school where she has been taking Kinder this year. She shouts and makes noises inappropriately and the teacher cannot get her to stop, so they send her out of the classroom. This is what she does when she becomes overwhelmed-she makes weird noises and becomes unresponsive to redirection-will not make eye contact or respond to your requests to stop. The teacher thinks she is being purposely inappropriate but I have tried hard to explain that this is her way of coping. They do a 5 minute still and quiet period with the lights out after recess and my daughter is just not able to make the transistion as quickly as the others.

Also, the Focalin seems to wear off while she is at school, causing even worse behaviors so I have not been giving it to her. On the days I was giving it to her, the teacher reported worse than normal behaviors in the afternoon.

I asked her OT to write a letter to the public school she will be attending in the Fall and she said that would be more appropriate from the Dev Pedi, which is impossible to get them to respond to anything at all!

 

[jodifla]

She will be 6 in June. She has had disciplinary problems in the private school where she has been taking Kinder this year. She shouts and makes noises inappropriately and the teacher cannot get her to stop, so they send her out of the classroom. This is what she does when she becomes overwhelmed-she makes weird noises and becomes unresponsive to redirection-will not make eye contact or respond to your requests to stop. The teacher thinks she is being purposely inappropriate but I have tried hard to explain that this is her way of coping. They do a 5 minute still and quiet period with the lights out after recess and my daughter is just not able to make the transistion as quickly as the others.

Also, the Focalin seems to wear off while she is at school, causing even worse behaviors so I have not been giving it to her. On the days I was giving it to her, the teacher reported worse than normal behaviors in the afternoon.

I asked her OT to write a letter to the public school she will be attending in the Fall and she said that would be more appropriate from the Dev Pedi, which is impossible to get them to respond to anything at all!

It's such a vicious circle, isn't it? So often, no matter what Dx you get, you are left to your own devices on a course of treatment!!

We were lucky....we were sort of stumbling around, trying to figure out what the heck was going on, when we started researching the studies they were doing at Vanderbilt.

We went there, and came away with a full plan. It's still difficult at school, because of his receptive language issues, but everywhere else is great.

Did you get a chance to look at the book The Mislabeled Child??

 

[GraceLuvsWDW]

It's such a vicious circle, isn't it? So often, no matter what Dx you get, you are left to your own devices on a course of treatment!!

We were lucky....we were sort of stumbling around, trying to figure out what the heck was going on, when we started researching the studies they were doing at Vanderbilt.

We went there, and came away with a full plan. It's still difficult at school, because of his receptive language issues, but everywhere else is great.

Did you get a chance to look at the book The Mislabeled Child??

I googled it last night and read a few of the articles. I guess I will order it if you guys think it will help. I have practically an entire bookshelf of books on all of this! Prhps I will try to find a research study around here.