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23 Sep 2017, 2:23 pm

I have a four year old daughter wih autism. She's been doing for one year of 15 to 25 hours a week of DTT (a few months from now she's also doing about 8 to 12 hours a week of Early Start Denver Model, which began with the purpose of increasing her social interest). The therapist which apply ESDM are still rookies in this model, and are receiving training via Skype. She's also doing 1 hour a week of sensory integraton therapy and two sessions a week of speech therapy.

In terms of social communication we feel she has improved quite little in the last year.

Im sure every autistic person is unique and above all a human being, but I'd like to hear from people previously diagnosed as moderate autistic about their childhood experiences.

I'm worried about my daughters prognostic in terms of leading a functonal life and Im trying to figure how to deal with this. I love her and I know autism isnt curable. I just want her to be funcional, independent and happy.



kraftiekortie
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23 Sep 2017, 2:43 pm

Hi there. I hope you don't mind if I ask:

What is her overall functioning like? Is she able to speak? How is she with other children? And in everyday tasks like toileting, dressing, etc.?

It would be impossible to guess a prognosis otherwise.



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23 Sep 2017, 2:54 pm

I was just going to say, kraftie is the one to talk to here! :)



kraftiekortie
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23 Sep 2017, 3:04 pm

I hope ASDMommyASDKID can post, too. She really is the WP authority on this topic.

Remember: it's not always hopeless when it comes to autism. I didn't speak till age 5 1/2. I started living independently, with a job, at age 20.



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23 Sep 2017, 3:05 pm

You'll find a great many autistic people here on WP who spent the better part of our lives having never even heard the word autism. Its surprising how functional one can be when one is given no other option.

Now that's not to say we have functioned normally, or without tremendous difficulty - it is, after all a serious handicap.

But as for myself, although I have always known (and my parents knew, way back in the early 60s when not even doctors had any clue what "autism" was) that something about me was not "normal," that I was incapable of functioning socially like regular people did, that my thought processes did not work along traditional lines, and that I was somewhat emotionally unstable and unpredictable, but not certifiably insane - none of that was explainable by a simple label, and as far as any of us knew, I was unique in my oddness. But I survived, and sometimes even flourished, perhaps because I didn't know that I couldn't.

I didn't even hear the word autism until I was 20, and only suspected that somehow it probably applied to me. I was 45 before someone pointed out what High Functioning Autism or Asperger Syndrome was, and all the pieces suddenly cascaded into place.

Point being, don't let the label intimidate you. It does (if you truly understand what autism is) explain what we experience and why living in a Neurotypical society is difficult for us, but it doesn't mean we're incapable of managing. The trick is recognizing that even though our handicaps are invisible, they are no less real than missing limbs or a twisted spine. The most frustrating thing about this disability is being able to mask it so well, no one believes you when you tell them you're struggling. Or hurting.

We hear things others don't hear. We see things others don't notice. We are sometimes overwhelmed by phenomena as seemingly innocuous as the [INCREDIBLY LOUD] hiss from the air conditioning vent. What others take for granted as common, everyday behavior is often baffling and inexplicable to us. We almost never know what is expected of us, or whether we're doing things correctly. And all of these things are immensely stressful. You may not know just how stressful, until we reach our breaking point and emotionally explode.

Because of this, it's crucial to have someone in our lives who is sympathetic with that stress, because to most people, for most of our lives, the sources of our anxieties are invisible, therefore our stress doesn't exist, and we're just weirdos making excuses for being difficult.


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Girls father
Hummingbird
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23 Sep 2017, 3:16 pm

"Hi there. I hope you don't mind if I ask:

What is her overall functioning like? Is she able to speak? How is she with other children? And in everyday tasks like toileting, dressing, etc.?

It would be impossible to guess a prognousis otherwise."

Of course. I really don't mind.

She communicates only with the purpose of making requents. EG: "I want my Pink butterfly", "I want my white bag". Lately she's having a lot of imediate echolalia. "Do you wat that horse", she replies "do you want that horse". That actually haven't improved that much, since the begining of treatment. She's some months from now frequently asking things with "please", eg: "open the door, please".
She rarely have issues with agressive behaviors. Currently she's not taking any medication, thats why I opened a topic about aripiprazole.
She cant dressing all by herself, but she can go to the toilet with verbal aid and dressing her pants with verbal aid. She puts her dressing on with partial physical aid. She has considerable motor stimming, such as flapping and moving her legs, which sometimes, decreases.

About a year ago or more she used to appretiate more company of other children. She's mostra too focused on objeto, but she is interested in some children she gets familiar with, like her cousin. She imitates his actions, laughs with him and follows him a lot. She's overall good with following instructions and imitating, but she often seems not to process questions or maybe she doesn't feel motivated to answer to them.



kraftiekortie
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23 Sep 2017, 3:35 pm

The prognosis is really not poor at all.

At least she has functional as well as echolalic speech, and she's at least partially toilet-trained. And she dresses herself partially. I didn't dress myself completely until age 6. Many "normal" 4 year olds still need to be at least partially dressed by their parents.

She also relates to other children, albeit it in sort of an "odd" way. Much better than not relating to people at all.

I would say a continued diligent approach just might work wonders for your daughter. But also accompanied by lots of love and her being involved with the family, and allowed to make mistakes and be gently corrected when need be, rather than harshly corrected (which sometimes happens with DDT).

Make sure you emphasize, to yourself and to her, her strengths. And don't harp on her weaknesses.

I forgot to ask: does she know her numbers, letters, and colors?



Girls father
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23 Sep 2017, 4:09 pm

She can name most of colors. She can count one to ten in a sorte of automaticamente way, and can say which numver is next in two languages, but names only 1 to 5 for now and sometimes she makes mistakes in naming numbers. She can't add yet. She can name vowels but doesnt know the whole alphabet yet. She can solve up to 48 pieces puzzles.

Im worried because she made relatively little progress in the VB MAPP and still relate very little with most peers. Bota in the VB MAPP and in the ESDM curriculum her development in in the range of a 24-30 year old child (or even less than that in a couple of fields) and she is 53 months old.



Girls father
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23 Sep 2017, 4:20 pm

Im sorry. My native language is Portuguese and Im typing from a snartphone, so the grammar corrector is making exchanging words



Girls father
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23 Sep 2017, 4:23 pm

Her development is a little higher in some fields as well and I know her baseline skills arent that poor. I just think her progress has been very slow since start of intervention.



Girls father
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23 Sep 2017, 4:26 pm

Thand you both very much for your replies.



Girls father
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23 Sep 2017, 4:39 pm

Im sorry if I seem a little anxious, and also Im not giving overvalue to scores. Im just worried about her improvement.



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23 Sep 2017, 5:06 pm

Thanks, KraftieKortie, but honestly I don't think anyone is an expert of this probably especially not me, but I would be happy to give my input to the OP for what it is worth. :)

Autistic kids really have a very different developmental path than neurotypicals. They speed up and plateau at different times, so it is very difficult to say much from any one point in time.

My son always acted differently and it did not take me long even before his diagnosis to figure out that the book I had on developmental information from 0 to 5 years had zero relationship to my son.

The first instinct in the face of large uncertainty is to try to characterize what you are dealing with as specifically as possible. It takes awhile to accept that that is not how it works. We never did any intense interventions, and it is really hard to tell what progress is made because of specific interventions and how much is because of developmental leaps. I don't know if we missed out on anything or not. We always just tried to work on what he seemed to be ready to learn, most intensively, and do a check for readiness for most other things, unless it seemed like something that could be accomplished by working in stages. That is another very important, to work in small chunks based on where they are now; and not work from where you wish they were and adjust downward.

For social communication, if the child does not want to, or is not ready for it, I am not really sure how an ABA-based program actually improves this. (The Denver model is a variant of ABA, right?) I am especially unsure how someone who is training concurrently with doing the actual therapy would be doing the best job.

As a disclaimer, we have done zero reward-based ABA therapy. The only thing we have done with ABA is use some of the paradigm to evaluate specific issues related to meltdowns and attempt to figure out causation and workarounds.

We did not do any of the reward-based therapy, and even if I was a fan of it, my son really responds in a very limited way to it. Reward systems worked for things like getting in a habit to do a particular thing everyday, that just required a teensy amount more effort that was was well in his ability range. None of it was in a formal therapy setting -- just trial and error.

What type of socializing are they attempting to motivate? Is it an actual desire to socialize or following social conventions like saying "thank you" and "please"? The social conventions tend to be more important for the teachers as opposed to your child. At that age, with autistic kids who are not terribly social, they are gibberish phrases that mean nothing because they solely act as social lubricant.

When I took French and we were working on writing dialogues we would get marked off, if we did not sprinkle "n'est ce pas" (Isn't it so? )fairly liberally into the writing. The teacher never could explain the purpose satisfactorily. She just said it is rude not to use it, and we just learned to put x number of n'est ce pas expressions into our homework. It was some kind of social lubricant we never understood, but did by rote based on a desire not to get points marked off. That is what "Thank you" and "please" are like to autistic kids who don't pick it up easily.

So, if they are teaching rote courtesy, she is not actually learning anything. She is just making her teachers feel better. She won't get it until she understands that we say thank you and please so people don't feel they are being ordered about, and so they are more likely to be happy about complying, and therefore more likely to do what we ask, pleasantly, now and in the future. If they are focusing on extinguishing harmless stims, this is also bad. They use stims to maintain interest or calm down, and often help them focus. it is usually some kind of sensory need. Anything harmless and not terribly disruptive should usually be left alone. If it is dangerous or really disruptive in a classroom, they can attempt to replace it, but they have to be very careful the child does not replace it with something worse.

These are just kind of general things, and as always, results will vary, but the best thing I have always found is to follow the child's interests and communicate however they want to communicate. If they like to write, do that. If they like to draw pictures do that. If they like to play wordlessly on the floor with blocks, play blocks with them and talk, even if she is not. Autistic kids can develop receptive speech skills way before their expressive speech skills bloom. My son did not have a speech delay per se, but he was very stingy with words. Then over time he became very verbose and today is a real chatterbox. :) First as with your daughter, there was mostly echolalia and then eventually original speech.

What does she like to do, and what are her aptitudes?

Edited to add: I looked up the Denver Model here: https://spectrumnews.org/news/early-the ... th-autism/ and from what I have read it is play-based which is a good thing, if they are having her do fun things at least and not boring drill work, like some ABA does. There appears to be issues with data loss with the study backing it, but it seems like the study states there is moderate progress that persists at 2 years past the program's end date. Also, I want to add that nothing legitimate is going to promise they can deliver dramatic progress--and anything that does is apt to be snake oil or worse.



Last edited by ASDMommyASDKid on 23 Sep 2017, 6:05 pm, edited 2 times in total.

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23 Sep 2017, 5:07 pm

Of course you are worried about her. It has hard to venture into a great unknown, and right now the future is exactly that, a great unknown.

My son is considered high functioning but he went to school with a child who was much lower functioning. Progress can be hard to see, it comes and it goes and it crawls and it suddenly leaps. It even goes backwards. You have to stay head down, focused on the goal, and follow protocols that research and experience have shown are likely to have the best outcomes, and that your instincts feel good about (instinct and knowing your unique child are going to be two of your most important guides on this journey). Odds are good that there will be a point in time far off in the future that you will be able to say, "wow, it really was all worth it." But there are no guarantees. So many factors come into play, not the least of which will be co-morbid conditions, many of which you won't be able to know about until 5 to 10 years from now.

Remember this: the odds have never been better.

My son is thriving, which people pretty much expected he eventually would. He is actually doing a year abroad with his university right now.

The lower functioning young man is happy but not fully independent, I believe (it's been almost a year since I last saw him). He studies history, which is his special interest, and he will really talk your ear off on the subject! When I heard a local museum was looking for someone to identify and catalogue a new collection they had received, I told them to hire this young man. I don't know if they did, but the job would be perfect. He is smart and he has friends, but he lives with his parents because there are everyday little things he struggles with. It is an acceptable balance, I think; he will find a way to use his special interest to build a life (if he hasn't already) and he is HAPPY.

Sometimes things don't turn out.

All you can do is give your child the best chance possible, and know you've given it all you have.


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23 Sep 2017, 5:52 pm

Girls father wrote:
In terms of social communication we feel she has improved quite little in the last year.

Im sure every autistic person is unique and above all a human being, but I'd like to hear from people previously diagnosed as moderate autistic about their childhood experiences.

I'm worried about my daughters prognostic in terms of leading a functonal life and Im trying to figure how to deal with this. I love her and I know autism isnt curable. I just want her to be funcional, independent and happy.

EzraS, I feel, is the expert on this, as he's a kid, has experienced some of these therapies, was upgraded from "severe" to "moderate" autism, is non-verbal----but, he's VERY smart, and so-forth!!

Hang in there----there IS hope, for your daughter!!





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