DD1's intake appt. with the ped. nuerologist

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Ok, Square, I have to tell you, based on what I read, you would have flipped your lid with me and probably locked me up or had me in all kinds of special classes. I used to hide in things all the time and couldn't be found. I had five brothers, but could play for hours by myself in my make believe world (that went on until I was eight when I began to write at which point it became acceptable because they were "stories"). I ate the exact same food for two years straight, then switched. I'm talking two years of pickled beets, then two years of mashed potatoes and pea gravy. Strange stuff I wouldn't even touch now although I'm still weirder than weird about food. If my mom made pancakes, my ears itched unbelievably and were in burning pain! She used to can and I literally had to go stay with relatives while she used vinegar. I talked to myself incessantly about my characrters and that later translated to writing incessantly about them. I had very narrow interests and a pretty healthy opinion about what I thought about the rest of the world, including authority figures. Guess what? They all knew it. That's because I would tell them. ) I would be in my own head and run into doors and walls (I still do if no one stops me). I could go on and on, but I think you get the picture. I went to normal classes, went to college and earned two degrees, got married and have a career. I'm still an alien. No one questions that.

So, I think you should calm down. They sound very normal to me. Twins are known to be close like that until they get older. They won't want their own identities until hormones kick in. At least that was true of all the twins I knew and my family has plenty and so does my town (no, we don't have many branches there lol). But, they were abnormally close, so I'm not sure that's autism or just twins. The imaginary friends thing still seems absolutely normal to me. So what if those other kids are too far behind to make up dragons and skunks. That's their loss.

Thanks kpupg! I think it's great! I still like stuff like that, too. I think we NTs get away from stuff that we really enjoy because, somehow, we feel that it's not appropriate anymore. Heck, if given the chance, I'd still like to play D&D and collect Magic the Gathering cards like I did when I was younger. I'm sort of looking forward to this phase, if it comes

ZanneMarie,

Thank you for your reply! I know I overreact to the things the kids are doing. I'm half-aspie myself, and obsess over things. My children are a focus of my hyperfocus, sometimes, unfortuneately.

That said, the girls are, I mean, officially, really, truly autistic. They were diagnoses as such by a renowned Phd, contracted by the Wake County school system during a multi-disciplinary evaluation, including their pre-school teacher, the school pychologist, their language therapist, and this autism specialist/doctor of psychology. They were given a battery of tests over many days, including CARS, ADOS, PLS, and more. The first two are specifically designed for screening for autism. This isn't just a case of a busy body dad - they really are autistic. Thank God it's fairly mild!

I do not cite the imaginary play as being significant in either way. It's never been a consideration for anyone when diagnosing their autism. They don't meet the 'lack of imaginary play' criteria, but the do meet enough of the other criteria on the DSM to qualify as full syndrome autistic.

The good news is that they are progressing, and appear to be "moving up the specturm", so to speak. Their language is much, much better than it was a year ago (at three, they were "disabled" according the PLS tests - now they are average, though with some pragmatics issues). Their sensory issues are greatly reduced, as is there need for routine and structure. As noted, their play and social skills have evolved. They are objectively less autistic then the were at three, which goes to show, ASD kids can progress greatly on their own, without heroic interventions, etc - at least in some cases.

Their main traits are language delay, perseveration, adehence to non-functional routine, and lack of social recipricosity. Abbie is slightly more affected than Evie, but neither are very severe, and their prognosis is fairly optimistic, but they do need therapies and they will need support for the foreseeable future.

Square,

Whew! Glad you gave me more info. I was obsessing on your obsession! Anyway, that explains much more, but I hope after hearing about me you do feel more hopeful. BTW, I don't have children (Good Lord, imagine the poor things if I did), but I do tend to obsess exactly like this over my pets, so I understand your feelings.


Good luck to the girls. I think twin Aspies are marvelous. My best friend, also Aspie, and I share the same name and always tell people we are mirror twins! LOL I think we wanted to be twins. So, I think it's great these two have each other. Just think how interesting your household will be. I'm wanting to come over and play make believe dragons right now!

Zanne

Lol! I love it. If more parents of young HFA/Aspie kids would talk to older HFA/Aspie people, they might feel a bit better about the future. This next decade and more is going to be interesting, that much I am sure

Well, as a father of three, two of whome are auties, I have barefly enough time to eat and sleep

Someday...

Abbie (twin of Evie) 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'.

I'm a 33 yr old female Aspie and as a child, around 4-5 years of old I had an imaginary 'friend' my parents said. It's just a lot of imaginary play with others I seemed to lack. Also I tended to drift towards adults vs. being around my peers. It's more the level of imaginary play and all that often seems the issue... not having an imagination itself as there are many of us on the spectrum that do have imaginations and can be creative.