My newly diagnosed 2 year old son

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emmablue
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14 Dec 2012, 5:43 pm

Hi. I'm new to this forum and also new to the world of Autism. I have 2 year old boy /girl twins, my daughter is typically developing (though she has a few mild sensory issues) and my son was just diagnosed with autism in November. The thing is, I'm having a hell of a time finding much information that seems to really relate to my son. What I mean is I find loads of accounts of children that are severely autistic, a good amount of info about aspergers, but not much about children diagnosed with autism on the mild end of the spectrum. I'll paint a quick picture of my son: he is nonverbal, he does babble a good deal and has various noises he makes for excitement or irritation but no real words. His stimming behaviors are some spinning and clapping, though he doesn't stim often. He is very social, and if someone new comes over he quickly warms up to them, but if we're out and someone corners him (like if he's in his stroller and buckled in) he doesn't like it and turns away. He has great eye contact and smiles a ton. His biggest challenges besides speech are calming down from a tantrum, and attention span. He has a very hard time sitting still. When we had him evaluated the therapists recommended 35 hours a week of ABA therapy. After speaking with them a bit more I learned that this would mean he'd be largely separated from his sister and me for much of the week. I can't even fathom how this would work, since as twins, he and his sister do everything together. Even his speech and occupational therapy, which he has once weekly, incorporate her. My husband and I want to do what's best for him but we're wondering if this amount of ABA might be overkill? We have found a preschool that is run by a speech pathologist and has a mix of typically developing and special needs kids, and we're thinking of enrolling both kids 3 days a week. Would that, coupled with speech and OT be enough or is the ABA really the best way to go? Are there any parents out there who have kids who sound similar to my son that might be able to give me some idea of what to expect? I'm just so confused, and the more I research, the more confused I get. Any help would be greatly appreciated!



Washi
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14 Dec 2012, 9:18 pm

There's a sticky at the top of the forum labeled "RE: Kids w/ Classic Autism, PDD-NOS & Speech Delays". There's a handful of us who post there who have young children who are or were at one time non-verbal. My son had a few words at 12 months, lost them around 18 months, diagnosed autistic at 2 and slowly regained some words ... he's 4 1/2 now and talks a lot but it's still in a way that's stereotypical of autism. He has a lot of tantrums/meltdowns over nonsensical things, very hyper.
Edit: Sorry, that was a half finished thought he distracted me for a bit there. My son had Early Intervention for about a year but hasn't gone to school yet. I didn't enforce ABA in a conventional way, the others have had mixed experiences with it and have their kids in school. I'm sure they can tell you more.



emmablue
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15 Dec 2012, 11:41 am

Thanks! I think I figured out how to attach it to that thread. :D



lady_katie
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16 Dec 2012, 1:13 pm

emmablue wrote:
When we had him evaluated the therapists recommended 35 hours a week of ABA therapy. After speaking with them a bit more I learned that this would mean he'd be largely separated from his sister and me for much of the week. I can't even fathom how this would work, since as twins, he and his sister do everything together. Even his speech and occupational therapy, which he has once weekly, incorporate her. My husband and I want to do what's best for him but we're wondering if this amount of ABA might be overkill?


First of all, your son sounds a lot like my son (16 months). He's still on the waiting list for the diagnostic eval. though. I've found the large majority of relevant information through this site and the Cafemom.com "Autism Support Across The Spectrum" forum. People link to all sorts of articles and videos and helpful things quite frequently.

Secondly, how on earth did you even find a 35 hour per week program? I've been fighting to get my son more than 1.5 hours per week, and the most I was able to do is get him into a special needs play group. I haven't spoken to anyone who's child is under the age of 3 who have been able to get more than a few hours of therapy, even with a diagnosis. Please share!



emmablue
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16 Dec 2012, 1:34 pm

Honestly it's what the place we had him evaluated through (WEAP, Wisconsin Early Autism Project) said they recommend that all children start with. The minimum they would do is 32. Now, we had to make sure our insurance covered it as the cost is insane, but since they did, there wasn't a problem. The only reason I'm holding off on doing it and opting to go the less intense route of preschool plus one hour of speech and one hour of OT weekly, is because it felt like overkill to shut him in a room away from his sister and I for 7 hours a day. Had they offered 10 hours a week I would have probably said okay. Maybe it's a state thing? I have heard that Wisconsin is very good when it comes to the programs offered for Autism.



zette
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16 Dec 2012, 4:56 pm

Is it a special needs preschool or a regular one? I don't know if an hour of speech a week will be enough. Our neighbor's daughter who had less than 10 words at 2.5 years got about 2-3 hours per week.

Have you asked whether it would be possible to incorporate his sister into the ABA for a significant portion of the time? It seems there ought to be a way to take advantage of having a natural playmate, especially since he is so social.



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16 Dec 2012, 5:10 pm

I am no questioning your son's diagnoses or anything but I wonder how he has autism if he lacks so many ASD traits. I know it's a spectrum. I know you can't label a kid with it over a speech delay only. Autistic kids usually stim all the time, not sometimes. but then again I also seemed like a typical toddler despite my speech delay as well and autism doctors thought I had then my parents didn't approve of. Yeah I played with my parents, I looked at my dad and the camera, I played, I played with my dad's friend's kid, I pointed to things, I was manipulative and did my terrible twos by trying to get my way, I had tantrums, I rocked a doll to sleep or pushed a doll around in my doll stroller. I pushed a car back and forth. All normal stuff and I wonder why did they think autism? I think if I wasn't speech delayed, they wouldn't have thought it. I wonder if there are other kids on the spectrum out there who reached all their milestones and did normal things NT babies do and then it showed as they got older because they reached their social limits. But my medical records seem to contradict my normal development because they mention my autistic behavior and they wrote when I was eight they were less prominent since my last evaluation. But I am also on the mild end too.


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Daughter: NT, no diagnoses. Possibly OCD. Is very private about herself.


Lesley1978
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16 Dec 2012, 8:09 pm

Hi :)

I also have twins, a boy and girl, and my son has autism. I also have an older son, they are they younger kids.

The twins just turned 4 and my son was diagnosed in October. I can't explain why he wasn't diagnosed earlier. He had some signs the whole time he was 2.

My son has just a very small amount of ABA at pre-school, and I am very pleased with it. He is going to start more in the new year.

This year, it is working well for my son and daughter to go to separate pre-schools. They are still very close and do well together.

I feel like.... I would not worry about separating them for a few hours a day.

However, if you decide you do not like it, you can always follow up on the other pre-school.

Or, you might look into the pre-school more, and decide it really will fit your needs.

At age 4.... I am concerned about my other kids having a "caretaker mentality" to my son. So I will say, I don't think they need to be separated, but there is value in separating them, too, when they are older.

I also have to admit, I worry, can Eli do things "on his own?" Well, it is so nice for him that the answer is yes! So it is even good for him.

But with that said, I don't know that there is one right answer either way.

Overall though I have felt like, to some extent, it is good to try to do a combination of what is right for each child and for our family, without thinking too much of them being twins. I don't try for equal, but just for some balance between all the kids and me and my husband. B/c what is convenient or easy to me can be considered, too.



MMJMOM
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16 Dec 2012, 9:44 pm

My son is HF Aspergers and didnt stim very much at all. In fact, I can name 2 stims he has had in his 7 years of life! One was running his hand on the fences, or walls. He could very easily be redirected from doing that. He was about 2 1/2 when he started that and it was short lived. He recently started to flap his hands fast for a minute when jumping. Again, easily redirected to another task and gives up the flapping.


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Ettina
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18 Dec 2012, 10:14 am

One thing you could do, if you have the time/energy, is design and run a home-based ABA program, and have his sister be a part of it too. A lot of parents run their own ABA programs (though most do it because of waiting lists) and there's research showing that it's often just as effective as a formal ABA program. Typically, the parents act as therapists and also hire volunteers to come in and work with the kid following the parents' instructions.

Some information about home-based ABA:

http://autismtruths.org/pdf/Parents%20Experiences%20of%20Hom-Based%20Applied%20Behavior%20Analysis.pdf
http://www.lbdesign.org/storage/Dillenburger%20et%20al.%202004%20Study.pdf
http://www.youtube.com/watch?v=Lbins7IVf4Y
http://www.brighthubeducation.com/parents-and-special-ed/45503-supplementing-aba-therapy-at-home-for-autistic-preschoolers/
http://www.ehow.com/how_2088312_start-home-aba-autism-program.html
http://www.youtube.com/watch?v=7pN6ydLE4EQ

Be aware of one issue many autistic people have with ABA - often the goal is normal behavior regardless of whether that is appropriate or functional for that individual child. For example, they very often don't take into account sensory issues that may cause a 'normal' behavior (such as eye contact) to be extremely aversive for the kid. This is one benefit of home-based ABA, that you can design it in a way that suits your individual child.

Also look into DIR/Floortime - it has less formal research backing, but what research there is into it is quite promising. some links here:

http://link.springer.com/article/10.1007%2Fs10803-006-0258-z?LI=true#page-1
http://www.floortimethailand.com/images/info/Pajareya_PilotRCTDIRFloortime_Thailand_Autism2011.pdf
http://www.youtube.com/watch?v=sQZ_6D6xGzc
http://www.youtube.com/watch?v=EPHjLe7MVYE
http://www.autismweb.com/floortime.htm
http://autism.about.com/od/treatmentoptions/a/floortimefun.htm
http://www.stanleygreenspan.com/

Of course, you can do both DIR and ABA, if you want.