Huge Study of Long-Term Development of Kids with ASD

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blondeambition
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05 Apr 2012, 1:38 pm

http://pediatrics.aappublications.org/c ... l.pdf+html

The above study came out this week and was published in Pediatrics, an Amercian medical journal.

Basically, the researchers collected information from California birth records to information in the files of children in California receiving government assistance due to autistic disorder. They found some interesting trends.

Some notes about this article and the research upon which it was based:

Data used: The researchers linked birth records from the California birth master files with autism caseload records from the California Department of Developmental Services. Through its 21 regional centers, the DDS is responsible for coordinating diagnosis, services, and support for persons with developmental disabilities, including autistic disorder (as defined by DSM IV), but not to those with other disorders on the autism spectrum. They used records of children born between 1992 and 2001 who had been diagnosed with autism by 2006. Excluding children born outside of California or with incomplete records, they came up with a sample size of 6975 people who had received autism services and were born in California. Children in California receiving services through the DDS are regularly assessed. Researchers used these periodic assessments and the children's birth records to come up with statistics reflecting the progress of the kids from age 3 to age 14, the period covered by DDS services for the kids.

The researchers graphed the kids' progress in these three areas: communication, social, and repetitive behavior.

They divided the kids into six groups based upon how they were doing at age three and where they ended up at age 14: low, low-medium, medium, medium-high, bloomers, and high.

The found that same kids were usually in the same trajectory groups for social and communication. A child in the high trajectory group for repetitive behavior was unlikely to be in the low trajectory group for social or communication and vice versa, but there was a little more variation when it came to this category.

The researchers found that most kids improved in the areas of communication and social but that they stayed in their own trajectory group. Their "bloomers" improved in the repetitive behavior trajectory, while many of the kids who had never shown repetitive behavior at age three began to show it later on.

7.5 % of children who started out between the low and low-medium trajectories for communication ended up just under the high group by age 14. 10.7% of the children who started out between the low and low-medium trajectories at age 3 ended up just under the high trajectory by age 14.

The stats showed the following factors correlated with the kids' progress:

1. Being diagnosed as "high functioning" to start out with was the best predictor of a "high functioning" outcome.
2. Lack of intellectual disability was correlated with positive outcomes.
3. The "late bloomers" tended to be children without intellectual disability and tended to be children of white, college-educated mothers.


What type of therapy and how much therapy the kids received was not available and not graphed. Private educational opportunities, medications used, and other resources that some of the children may have had were not part of the available data either.

The stats also did not reflect which of the children might have been diagnosed and received therapy prior to age three, possibly increasing their IQ or starting them off in a different trajectory.

A disproportionate number of the children of foreign-born mothers were in the low-functioning categories in both the communication and social areas.

The data indicated to me that most children are able to improve, some children are able to improve a lot, and that availability of resources can be a big factor for some kids in their outcome.

--Very interesting study, especially since California is considered one of the best places in the U. S. to get public services.


_________________
www.freevideosforautistickids.com is my website with hundreds of links and thousands of educational videos for kids, parents and educators. Son with high-functioning classic autism, aged 7, and son with OCD/Aspergers, aged 4. I love my boys!


liloleme
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06 Apr 2012, 7:18 am

Thank you for posting this. My kids were both diagnosed and treated initially in California. They gave Maddy, of course, full services and paid for lots of in home therapy and put her into the school in Vista which is called California Ave School. It is a public school for kids with handicaps. They take kids from 3 usually up to 5 and then dump most of them into the regular public school system which is why Im glad we got out before Maddy turned 5. Her little school here was an easy transition, her 1st grade in the big school is a different story, we just got her report card and she is doing very well in many areas but they also say they have a lot of issues with her.....a lot of meltdowns and shutdowns and refusals to do anything). Cal Ave has a nationally accredited autism program they did wonders with Maddy and would probably be shocked to see how much she has regressed but she is turning around more thanks to our wonderful therapy center and will probably go to the autism school next year which will be easier and more comfortable for her. She is just not ready yet for a regular public school....even with an aide, because her aide knows very little about autism.

Anyway, when they diagnosed Luc with Asperger's they told us we would get NO services as they did not give services to high functioning kids. However we did get services for him, he got in home therapy as well and we also had a educational advocate to go with us to IEP meetings. We were also told that they were going to put him in a social group. This was when we got a letter from the Regional Center saying that they could no longer support Luc because of the huge cuts the state had made. I was pissed and wrote to the Senator and the Governator (Arnold)....I mean they took all the money from the school, how dare they take the money away from disabled children? Anyway we were fortunate that the place that worked with Maddy and were paid through the Regional Center (they did not take her services away) would figure out how to get Luc one day of therapy and they found that my insurance would pay for their social group so they helped us a lot. So that is why there is no help for the "higher functioning kids" the state of California took money from the Regional Center because they are slimy pigs (wait that is not fair to pigs), they are money hungry disgusting slime mongers.....sorry but they are! I mean, I know how much money we had to pay in taxes for our little tiny houses....I can only imagine how much they got for the huge houses in La Jolla and Del Mar in San Diego only....what about San Francisco. I dont know what Governer Gray Davis did with the money but obviously its not been fixed.

Kind of makes me wonder if my kids were involved in that study. I think the reason they helped us more than they would other people was because of Maddy and they also knew I had Aspergers's and my older daughter as well so since we had strong genetic links they deemed Luc as needing services....also he did only score two points from being labeled classic autism....even though he constantly twirls his hair they did not consider this a repetitive behavior and he spoke very well and used the huge "little Professor" words. Its funny because the psychologist told me that when he was older he would appear more Asperger-like and that is true. Also I was told the opposite by the psychologists that assessed Maddy, they told me that girls typically progressed much faster but, and I know this would have happened even if we stayed there, my daughter started to regress since we moved. In some ways she has progressed....like academically but as far a "appearing" more autistic she has regressed and also her communication, even though she knows some French words, she has a photogenic memory but the words dont mean anything to her. She got a low grade in putting together a sentence.....well duh :roll: how could she put together a sentence when she doesnt even make any sense when she talks and has no clue what those words mean. She can say simple sentences but it is cool that because of her perfect pitch she does not sound American at all when she says French words. I think shes amazing and so is my Luc but I am a bit bias ;)



angelgarden
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06 Apr 2012, 7:49 am

liloleme wrote:
Thank you for posting this. My kids were both diagnosed and treated initially in California. They gave Maddy, of course, full services and paid for lots of in home therapy and put her into the school in Vista which is called California Ave School. It is a public school for kids with handicaps. They take kids from 3 usually up to 5 and then dump most of them into the regular public school system which is why Im glad we got out before Maddy turned 5. Her little school here was an easy transition, her 1st grade in the big school is a different story, we just got her report card and she is doing very well in many areas but they also say they have a lot of issues with her.....a lot of meltdowns and shutdowns and refusals to do anything). Cal Ave has a nationally accredited autism program they did wonders with Maddy and would probably be shocked to see how much she has regressed but she is turning around more thanks to our wonderful therapy center and will probably go to the autism school next year which will be easier and more comfortable for her. She is just not ready yet for a regular public school....even with an aide, because her aide knows very little about autism.

Anyway, when they diagnosed Luc with Asperger's they told us we would get NO services as they did not give services to high functioning kids. However we did get services for him, he got in home therapy as well and we also had a educational advocate to go with us to IEP meetings. We were also told that they were going to put him in a social group. This was when we got a letter from the Regional Center saying that they could no longer support Luc because of the huge cuts the state had made. I was pissed and wrote to the Senator and the Governator (Arnold)....I mean they took all the money from the school, how dare they take the money away from disabled children? Anyway we were fortunate that the place that worked with Maddy and were paid through the Regional Center (they did not take her services away) would figure out how to get Luc one day of therapy and they found that my insurance would pay for their social group so they helped us a lot. So that is why there is no help for the "higher functioning kids" the state of California took money from the Regional Center because they are slimy pigs.....sorry but they are!

Kind of makes me wonder if my kids were involved in that study. I think the reason they helped us more than they would other people was because of Maddy and they also knew I had Aspergers's and my older daughter as well so since we had strong genetic links they deemed Luc as needing services....also he did only score two points from being labeled classic autism....even though he constantly twirls his hair they did not consider this a repetitive behavior and he spoke very well and used the huge "little Professor" words. Its funny because the psychologist told me that when he was older he would appear more Asperger-like and that is true. Also I was told the opposite by the psychologists that assessed Maddy, they told me that girls typically progressed much faster but, and I know this would have happened even if we stayed there, my daughter started to regress since we moved. In some ways she has progressed....like academically but as far a "appearing" more autistic she has regressed and also her communication, even though she knows some French words, she has a photogenic memory but the words dont mean anything to her. She got a low grade in putting together a sentence.....well duh :roll: how could she put together a sentence when she doesnt even make any sense when she talks and has no clue what those words mean. She can say simple sentences but it is cool that because of her perfect pitch she does not sound American at all when she says French words. I think shes amazing and so is my Luc but I am a bit bias ;)


Yeah. My parents live in Vista and my brother/sister-in-law & kids live in a more 'posh' area near Irvine and kids go to a very well-funded public school. Even then, she was told 'unless your child is banging their head against the wall and flailing on the ground, you won't get any extra services'. Such a shame. But glad they are doing studies to track benefits of intervention.



blondeambition
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06 Apr 2012, 5:52 pm

angelgarden wrote:
liloleme wrote:
Thank you for posting this. My kids were both diagnosed and treated initially in California. They gave Maddy, of course, full services and paid for lots of in home therapy and put her into the school in Vista which is called California Ave School. It is a public school for kids with handicaps. They take kids from 3 usually up to 5 and then dump most of them into the regular public school system which is why Im glad we got out before Maddy turned 5. Her little school here was an easy transition, her 1st grade in the big school is a different story, we just got her report card and she is doing very well in many areas but they also say they have a lot of issues with her.....a lot of meltdowns and shutdowns and refusals to do anything). Cal Ave has a nationally accredited autism program they did wonders with Maddy and would probably be shocked to see how much she has regressed but she is turning around more thanks to our wonderful therapy center and will probably go to the autism school next year which will be easier and more comfortable for her. She is just not ready yet for a regular public school....even with an aide, because her aide knows very little about autism.

Anyway, when they diagnosed Luc with Asperger's they told us we would get NO services as they did not give services to high functioning kids. However we did get services for him, he got in home therapy as well and we also had a educational advocate to go with us to IEP meetings. We were also told that they were going to put him in a social group. This was when we got a letter from the Regional Center saying that they could no longer support Luc because of the huge cuts the state had made. I was pissed and wrote to the Senator and the Governator (Arnold)....I mean they took all the money from the school, how dare they take the money away from disabled children? Anyway we were fortunate that the place that worked with Maddy and were paid through the Regional Center (they did not take her services away) would figure out how to get Luc one day of therapy and they found that my insurance would pay for their social group so they helped us a lot. So that is why there is no help for the "higher functioning kids" the state of California took money from the Regional Center because they are slimy pigs.....sorry but they are!

Kind of makes me wonder if my kids were involved in that study. I think the reason they helped us more than they would other people was because of Maddy and they also knew I had Aspergers's and my older daughter as well so since we had strong genetic links they deemed Luc as needing services....also he did only score two points from being labeled classic autism....even though he constantly twirls his hair they did not consider this a repetitive behavior and he spoke very well and used the huge "little Professor" words. Its funny because the psychologist told me that when he was older he would appear more Asperger-like and that is true. Also I was told the opposite by the psychologists that assessed Maddy, they told me that girls typically progressed much faster but, and I know this would have happened even if we stayed there, my daughter started to regress since we moved. In some ways she has progressed....like academically but as far a "appearing" more autistic she has regressed and also her communication, even though she knows some French words, she has a photogenic memory but the words dont mean anything to her. She got a low grade in putting together a sentence.....well duh :roll: how could she put together a sentence when she doesnt even make any sense when she talks and has no clue what those words mean. She can say simple sentences but it is cool that because of her perfect pitch she does not sound American at all when she says French words. I think shes amazing and so is my Luc but I am a bit bias ;)


Yeah. My parents live in Vista and my brother/sister-in-law & kids live in a more 'posh' area near Irvine and kids go to a very well-funded public school. Even then, she was told 'unless your child is banging their head against the wall and flailing on the ground, you won't get any extra services'. Such a shame. But glad they are doing studies to track benefits of intervention.


They didn't really have the data to know who was using what interventions and how much. However, it did appear that low functioners from the socioeconomic group with the most resources were the most likely to show big improvements.

Where I live (Austin, Texas) there are a whole lot of kids with Autism and fewer public resources than in California. It seems like around here, the low functioners who make the biggest gains come from two groups:

1. They have highly educated and very patient mothers who stay home and work with the kids whenever they are out of school, provide as many educational resources and as much therapy to them as possible, and either homeschool or fight the school district when services are jeopardized.
2. The parents are affluent enough to afford to place the child in one of the local private schools for children with autism and presumably provide other private resources.

Of course many parents try one of the options above, and it still doesn't work.
My older son could be classified as what the study calls a "bloomer"--basically moving from low-funtioning to high-functioning. I guess that, as a mother, I would fall into category # 1 of my own two categories above.


_________________
www.freevideosforautistickids.com is my website with hundreds of links and thousands of educational videos for kids, parents and educators. Son with high-functioning classic autism, aged 7, and son with OCD/Aspergers, aged 4. I love my boys!