Evie's intake with the ped. nuerologist

[squaretail]

So, Evie (4.5 year old twin DD) had her intake appt. with the ‘goto’ pediatric neurologist for autism in these parts. I couldn’t attend due to work (I actually do work sometimes, believe it or not!), but their mom gave me the run-down.

Basically, the MD said that Evie was “mild” and that she’d be “fine”. She said she the proper placement for her will be a mainstream classroom. She said her language is “great”, just some minor pragmatics issues that can be learned. She said her biggest challenges will be social – just not “getting” the social cues – stereo-typical HFA/Aspie stuff.

Sounds like mom was asking the doc about the girl’s imagination – how they always are pretending to be animals and characters. She said that’s fairly common with HFA/Aspie kids, and she knew about 12-13 kids like that. She said, typically, the pretend play will evolve into obsessions with things such as ‘neo-pets’ (whatever that is) and the like – they’ll transfer this imaginative play and obsessions onto collectable toys and cards and the like.

She said that she thinks that Evie will do fine learning the academics that are expected of her.

She recommended ‘Social Stories’ by Carol Gray (sp?) and getting Evie into classes and activities where she’ll be around peers.

She said no to ABA/VBA – said it’s not going to help her much with given her current functioning level. She said no to special diets and to bio-medical interventions (because there’s no evidence of any problems that might be helped by those things). She said that we should just address issues as they come up – as we’ve been doing – with language therapy for her pragmatics issues, getting her evaluated for OT (we did that yesterday), that sort of thing.

She wrote a prescription. The prescription is as follows:

“Evelyn will do best if treated more as a typical child with behavior and expectations”.

My wife actually asked her to write an Rx like that so I’d stop obsessing about getting every treatment under the sun for the girls.

She asked us to come back in a year for a follow-up visit.

Abigail's intake is tommorrow. I reckon it will be a similar assessment, though Abbie doesn't function quite as well as Evie (she is more rigid and has more language pragmatics issues).

Interesting…

[Sophist]

Sounds like a good eval, squaretail.

Carol Gray, btw, works a lot with Tony Attwood. They write papers and seminars together.

[Blandit]

That's good news, Squartail, and sounds like you and your wife are doing the right things for your daughters' growth and development.

Strangely, my son was always very concrete and non-creative/imaginative. He still is and projects that require creativity go undone or barely fill the requirements. He also speaks in monotone.

[Aspen]

I am eager to see what they say about Abigail tomorrow.

My daughter has the active imagination too. Her imagination is better than mine is.

[Sophist]

I am eager to see what they say about Abigail tomorrow.

My daughter has the active imagination too. Her imagination is better than mine is.

My fantasizing seems to have dwindled come adulthood. I used to daydream ALL the time. Now I just stare off into space and think about topics and stuff, not really scenarios or anything.

[squaretail]

Abbie had her intake with the ped. nuerologist. I was there, this time. Here's a brain dump.

*Abigail is also mild (as is Evie), but closer to moderate than Evie is (but still mild). She presents about the same, but has slightly more language pragmatics issues and was a little more difficult to engage. She did have good skills that will be useful in the future - good ability to imitate, curiousity about things and people in the environment, desire to socialize, good functional language, that sort of thing.

*She once again said that she thinks the girls will be "fine". Since I was there this time, I asked her to define "fine". She said, she mean that she'll finish school, have friends, find gainful employment eventually. She was careful to point out that there are no guarantees, even with NT kids, but she saw nothing to preclude any of this.

*I asked if kids like my daughters ever learn to drive a car of work outside of a sheltered environment. She said that she saw no reason to think that the girls wouldn't acheive these things. She said that 'judgement' (while driving) might be an issue. She said that the girls probably wouldn't be salespeople (lol), but that she's seen lots of kids like mine grow up to work in libraries, or in medical records, that sort of thing, but there's no reason to put any artificial limits on what our expectation is for them.

*She reiterated that their biggest challenge will be social issues,and that middle school will likely be the hardest time for them.

*She believes that autism IS on the rise. She believe that much of it is due to better screening, recognition, and a broadening criteria, but she also believes that we're seeing a real increase not only in ASDs, but in things like infertility and other afflictions. She DOES NOT believe that it is thimerosol or vaccines. She does believe it is some multi-dimensional problem involving genetics and environmental factors.

*She advised caution with the biomedical approach. She said that the conclusions that they draw from their tests are open to interpretation, and in some cases, no matter what the result of the test is, they will claim the test indicates a problem. In other words, no matter what the test results say, the answer is always "yes". She does not think that all, or even most doctors treating autism bio-medically are unsrupulous. She does believe that some or even most of them believe in what they are doing and feel that they are providing a service. That said, she was leery of a conflict of interest - where there's somewhat of an incesstuous relationship between the ARI, the labs that they use (Great Plains), and the compaines who manufacture the supplements, which, combined with parental desperation, creates a ripe climate for quackery and unethical behavior. Basically, she said exercise great caution with these people, and realize that, it is mostly "faith based". If you believe in bio-medical causes, like she said, the tests can and will be justified to confirm the suspicions, no matter the results. In other words, the tests are sometimes meaningless, because whether positive or negative (however that is defined for whatever tests), folks will argue that either results indicates a problem that should be treated bio-medically.

*She said that a dietary and environmental approach might make more sense if the girls exhibitied some digestive or metabolic co-morbitity, which they don't. Therefore, she seemed to caution us against pursuing biomedical interventions, because of the problems with the screening tests, alluded to above. SHe HAS seen great behavioral improvements for some autisitc kids with diet and other bio-medical interventions, but believes that's because some discomfort or allergic reaction, for example, was eliminated, and thus the child had better behavior because there wasn't something bothering them all the time - that sort of thing. She said the dietery interventions and such seemed to have a postivei affect on kids with severe behavioral problems, but not so much for kids who were merely autistic, but had no severe behavioral problems.

*She said she has never seen anyone "cured" of autism. She said that she has seen many children do very well, who end up with the appearance of normalcy, but she does not believe that they are "cured" - just that they are coping particularly well, and have learned and been given (through therapies), useful skills in navigating the social landscape. She believes that education therapies are the most effective treatments.

*She is a great believer in education therapies. She is a strong proponent of ABA. She, however, would not reccomend ABA for the girls due to the expense and return on investment (due to the girls current functional level and any improvements we could expect to see - the progress might not justify the expense and intensity of the program for small, incremental gains which could be acheived with other, more economical approaches). She said that it might have been something that would have had a much greater return on investment when they were younger and pre-verbal. She has seen kids do GREAT with ABA and related therapies, and absolutely believes that early intervention with ABA is an important factor in these kids making good progress.

*She said that our TEACCH based curriculum, as I have suspected, isn't about normalizing autistic kids, but adapting the environment to them, with the thought that the kids cannot be made "normal", and thus the environment should be tailored to suit their deficts and strengths. She said it is a good system for educating autistic kids, but it's not a curative therapy.

*She said the Northeast has embraces ABA, and is probably the best place to be for those types of services.

*SHe recommended that we seek social and language type therapies for the girls, as well as exposure to same age peers. She mentioned RDI as something we mgith want to try, as well as social stories, social skills groups, and encouraged mainstream kindergarten as a great opportunity for growth.

*She said the best predictor of success is acquisition of functional language by age 5, and an IQ that tests in the normal range or above.

*She said that the 2% statistic should not be taken to heart, as the data is old and the adults participated in that survey probbably were more severely affected than many kids diagnosed today (who aren't yet old enough to be counted) and haven't had the same level of services and guidance that our kids will have.

*She said that our expectations for the girl's outcome should be similar to what it should be for them if they were NT. There is no reason to accept limitations on what they can accomplish, other than guiding them towards occupations that won't require social agility.

*She said that the girls might have been diagnosed with autism 10 years ago, but would almost surely not have been diagnosed 20 years ago. She said that the would have problably been diagnosed with 'Language Delay', or simply with some generic tag such as 'learning disability'.

[ukenkerl]

Abbie had her intake with the ped. nuerologist. I was there, this time. Here's a brain dump.

*Abigail is also mild (as is Evie), but closer to moderate than Evie is (but still mild). She presents about the same, but has slightly more language pragmatics issues and was a little more difficult to engage. She did have good skills that will be useful in the future - good ability to imitate, curiousity about things and people in the environment, desire to socialize, good functional language, that sort of thing.

*She once again said that she thinks the girls will be "fine". Since I was there this time, I asked her to define "fine". She said, she mean that she'll finish school, have friends, find gainful employment eventually. She was careful to point out that there are no guarantees, even with NT kids, but she saw nothing to preclude any of this.

*I asked if kids like my daughters ever learn to drive a car of work outside of a sheltered environment. She said that she saw no reason to think that the girls wouldn't acheive these things. She said that 'judgement' (while driving) might be an issue. She said that the girls probably wouldn't be salespeople (lol), but that she's seen lots of kids like mine grow up to work in libraries, or in medical records, that sort of thing, but there's no reason to put any artificial limits on what our expectation is for them.

*She reiterated that their biggest challenge will be social issues,and that middle school will likely be the hardest time for them.

*She believes that autism IS on the rise. She believe that much of it is due to better screening, recognition, and a broadening criteria, but she also believes that we're seeing a real increase not only in ASDs, but in things like infertility and other afflictions. She DOES NOT believe that it is thimerosol or vaccines. She does believe it is some multi-dimensional problem involving genetics and environmental factors.

*She advised caution with the biomedical approach. She said that the conclusions that they draw from their tests are open to interpretation, and in some cases, no matter what the result of the test is, they will claim the test indicates a problem. In other words, no matter what the test results say, the answer is always "yes". She does not think that all, or even most doctors treating autism bio-medically are unsrupulous. She does believe that some or even most of them believe in what they are doing and feel that they are providing a service. That said, she was leery of a conflict of interest - where there's somewhat of an incesstuous relationship between the ARI, the labs that they use (Great Plains), and the compaines who manufacture the supplements, which, combined with parental desperation, creates a ripe climate for quackery and unethical behavior. Basically, she said exercise great caution with these people, and realize that, it is mostly "faith based". If you believe in bio-medical causes, like she said, the tests can and will be justified to confirm the suspicions, no matter the results. In other words, the tests are sometimes meaningless, because whether positive or negative (however that is defined for whatever tests), folks will argue that either results indicates a problem that should be treated bio-medically.

*She said that a dietary and environmental approach might make more sense if the girls exhibitied some digestive or metabolic co-morbitity, which they don't. Therefore, she seemed to caution us against pursuing biomedical interventions, because of the problems with the screening tests, alluded to above. SHe HAS seen great behavioral improvements for some autisitc kids with diet and other bio-medical interventions, but believes that's because some discomfort or allergic reaction, for example, was eliminated, and thus the child had better behavior because there wasn't something bothering them all the time - that sort of thing. She said the dietery interventions and such seemed to have a postivei affect on kids with severe behavioral problems, but not so much for kids who were merely autistic, but had no severe behavioral problems.

*She said she has never seen anyone "cured" of autism. She said that she has seen many children do very well, who end up with the appearance of normalcy, but she does not believe that they are "cured" - just that they are coping particularly well, and have learned and been given (through therapies), useful skills in navigating the social landscape. She believes that education therapies are the most effective treatments.

*She is a great believer in education therapies. She is a strong proponent of ABA. She, however, would not reccomend ABA for the girls due to the expense and return on investment (due to the girls current functional level and any improvements we could expect to see - the progress might not justify the expense and intensity of the program for small, incremental gains which could be acheived with other, more economical approaches). She said that it might have been something that would have had a much greater return on investment when they were younger and pre-verbal. She has seen kids do GREAT with ABA and related therapies, and absolutely believes that early intervention with ABA is an important factor in these kids making good progress.

*She said that our TEACCH based curriculum, as I have suspected, isn't about normalizing autistic kids, but adapting the environment to them, with the thought that the kids cannot be made "normal", and thus the environment should be tailored to suit their deficts and strengths. She said it is a good system for educating autistic kids, but it's not a curative therapy.

*She said the Northeast has embraces ABA, and is probably the best place to be for those types of services.

*SHe recommended that we seek social and language type therapies for the girls, as well as exposure to same age peers. She mentioned RDI as something we mgith want to try, as well as social stories, social skills groups, and encouraged mainstream kindergarten as a great opportunity for growth.

*She said the best predictor of success is acquisition of functional language by age 5, and an IQ that tests in the normal range or above.

*She said that the 2% statistic should not be taken to heart, as the data is old and the adults participated in that survey probbably were more severely affected than many kids diagnosed today (who aren't yet old enough to be counted) and haven't had the same level of services and guidance that our kids will have.

*She said that our expectations for the girl's outcome should be similar to what it should be for them if they were NT. There is no reason to accept limitations on what they can accomplish, other than guiding them towards occupations that won't require social agility.

*She said that the girls might have been diagnosed with autism 10 years ago, but would almost surely not have been diagnosed 20 years ago. She said that the would have problably been diagnosed with 'Language Delay', or simply with some generic tag such as 'learning disability'.

For what it is worth, I think she gave you some good advice! The brain is a funny thing, and NOBODY really knows even the basics of how it REALLY works. One thing people DO know is it can repair and adapt itself pretty well, and there are a lot of different development stages. Their brains will even change a bit after 10. To hear some, you would think major things happen even after 17. Encourage them, give some challenge(Maybe you can get them into puzzles or some games that require mental effort), reward accomplishments. If they do something bad, and you KNOW they did, punish them a little THEN. If time passes, or there is reasonable doubt, don't.

BTW My sales teacher in college(I got a high B as I recall, by the way), even though he, and everyone else, was impressed with how I marketed my product, said I would have trouble selling gold at a dollar! I'm not a good salesperson either. When things were more complicated, I could sell computer products based on spec and explanation but, today, everyone thinks it is so simple, and highschool students are selling more stuff with a wider profit margin.

So don't be upset by that comment.

Steve

[goddessoflubbock]

It sounds like a great prognosis, overall.

As ukenkerl said, you'll see changes also as your children hit certain age milestones. I know we certainly did.

Sounds like a bright future.

[odeon]

I agree with the others that you got some good advice. It sounds like the MD is a really good and sensible one, and you shouldn't have any reason to doubt her at the moment.

I think that her points about not artificially limiting the expectations on your girls are very wise indeed, and wish that there would be more professionals out there like her.

[Aspen]

I think you live in a very good part of the country, because I think TEACCH is a good point of view to take working with our kids.

RDI is also good. I did some of the young children activities with my daughter. You could buy the books and do them on your own, skipping any that don't make sense for them. For example, I remember one where I was supposed to say "I love you" to my daughter and she was supposed to respond, "I love you too." That was sort of silly, in a way. My daughter would respond, "Don't say you love me! Saying "I love you" makes my fairy light go out." So we skipped over that one.

[squaretail]

Thanks Folks,

Another interesting thing - she was dressed in this button down, plaid, cowboy style shirt with a bunch of animals embroidered onto it, ala Temple Grandin! That's the first thought that crossed my mind as she walked in - she's emulating Temple's style of dress!

I contacted THE local RDI consultant in these parts and am going to look into their program. The RDI stuff seems reasonable and harmless, and fun, if nothing else. It's worth a look.

I was really surprised that she was so positive with her prognosis, and very happy about that. I thought for sure she would hedge on my questions about whether or not the girls are likely to drive, or work, etc - but she didn't. That made me feel good. I hope she's right.

She did mention that many autistic adolescents suffer greatly from depression, and an image of my sweet little Abigail, the happy little girl that she is, all grown up and suicidal flashed through my mind. It was vivid and and evoked a fleeting emotional response. I want to do what I can to ensure that my kids never have to suffer like that...

[Blandit]

Sqaretail wrote: Basically, she said exercise great caution with these people, and realize that, it is mostly "faith based". If you believe in bio-medical causes, like she said, the tests can and will be justified to confirm the suspicions, no matter the results. In other words, the tests are sometimes meaningless

I think almost all disciplines are like this. I just commented this same thought recently concerning the mainstream medical and pharmeceutical disciplines. Very often, the test is tailored to get a certain result, and/or the results are interpreted through some ingrained preconceptions. (I forgot what I was referring to; wish I could remember. It was a prime example!)


It is good that you recieved such a great report on your daughters! Maybe you can breathe a bit easier now.

[Sophist]

My stats prof always loved to say "Statistics don't lie; but scientists can."