Aspen wrote: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.
squaretail wrote: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'.
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