Treatment options, and where to go next

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Silas
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01 Oct 2010, 9:32 am

I have two boys who have been diagnosed with autistic-spectrum disorders. One has Asperger's Syndrome and is likely "gifted" (he is 7 and reads at a 6th grade level, is able to memorize virtually anything, and excels in math and speaking), and the younger has PDD-NOS

It is the younger boy I am more worried about. He is 4 and has trouble with language: both speaking and some comprehension. His intelligence and development is difficult to measure because of this. he does puzzles, builds things, etc., and is sociable -his issues are mainly with language.

The recommended course of treatment is speech therapy (which I can get some through the school district), OT, and ABA

The Applied Behavioral Analysis is going to be tricky. It is my understanding that 20-30 hours of this a week is necessary, and insurance does not cover it. We might be able to get some consulting hours covered by insurance, but that is about it.

What do people do? How do they afford the treatment? Where can I go for help?



jat
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01 Oct 2010, 9:46 am

You don't say where you live, and that really is critical. How you access services is very dependent on the the way the services are provided in your particular country or state.



Silas
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01 Oct 2010, 10:23 am

we live in Naperville, Illinois

I guess another option is a developmental preschool (my kids are home-schooled right now)



jat
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01 Oct 2010, 10:59 am

Most people who receive ABA services for their preschool children receive them through their preschool service providers. In some areas, this would be the school district, in some areas, it is the county (3-5 y.o. services are provided by different entities, depending on the way things are set up in your area). Since your son is already 4, it is critical that you get the evaluations underway asap - things take painfully long in these systems, and you want things to start soon! Also, you should check on the insurance issue - many states have recently passed new insurance initiatives that require private insurers to cover ABA (up to a certain amount) - your state might be one of them.

You might want to consider a developmental pre-school, but that is a separate issue from ABA.



Silas
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01 Oct 2010, 11:05 am

What we have been told is that insurance will cover evaluation and 3-4 visits from consultants, but will not cover the day-to-day ABA therapy.

The 4 year old has had a full evaluation, and does have an IEP in the school, but I don't think the school does anything with ABA.

I'm trying to figure out how in the world I am going to pay for this, or what the best course of action is.



AardvarkGoodSwimmer
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01 Oct 2010, 11:12 am

Silas wrote:
. . . he does puzzles, builds things, etc., and is sociable -his issues are mainly with language. . .

With language, does he have strengths right now that you can build off of?

And here's an idea, if your 4 yr old speaks some, what if you hire a foreign student to help him with language and they both speak into a tape recorder? You see, the foreign student, who in trying to improve his or her English skills, is motivated and interested, and your son might pick up on this, and the whole thing might be more fun and motivating.

DISCLAIMER: I am not a parent. I am a person on the spectrum myself.



Last edited by AardvarkGoodSwimmer on 01 Oct 2010, 11:15 am, edited 1 time in total.

jat
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01 Oct 2010, 11:13 am

I am totally confused. You said the recommended treatment is ABA. I don't understand how the recommended treatment is ABA and the IEP doesn't include ABA. The IEP is supposed to follow the recommendations. The placement is supposed to follow the determination of the needs of the child; the child isn't supposed to be "placed" until the needs have been assessed and it's been determined that the placement can meet the needs of the child. Here, many children have a program that includes home-based ABA - not all the services are necessarily provided in the context of a school in the pre-school years.

You might want to contact someone locally to you, who can help you sort out how to approach things in your district. Remember that an IEP meeting can be called whenever needed - you don't have to wait for the next scheduled meeting, and if you are dissatisfied with the current IEP, you can reject it, and/or call for a new meeting.



Silas
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01 Oct 2010, 11:24 am

sorry, I should have specified

the extensive evaluation has was given was through a 3rd party (private) and not affiliated with the school district.

Fortunately, he does have some language, and can carry on very simple conversations -but he is delayed for sure.



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01 Oct 2010, 11:40 am

Silas wrote:
. . . but will not cover the day-to-day ABA therapy. . .

I attended two presentations on ABA at a local university. It struck me as phoney in that the instructors are energetically playing a role, and the child may pick up on this. It is clunky. Interesting and ironically, it is similar to Aspie-style communication that I often do! The instructor is so focused on "getting it right" that he or she is essentially in the mode of all sending-no receiving.

For example,

"Let's play with the truck."

"Let's pick up our toys."

"Good job!" (the instructor really acting to give this effusive praise) This may be reinforcing to some kids, not so much to others.

The attempt is to find an appealing reward and then do multiple trial of stimulus-response. But the play periods we're so short, I don't know how the child could really get into it. It seemed more like pretending activities than developing skills. Maybe. It's hard to tell.

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The problem is that ABA seems to be believed with a mathematical certainly as if it's a religion: 'If we reward a behavior, it will become more common. If we non-reward a behavior, it will become less common . . . ' Yes, to an extent, but a lot more is going on. We are complex human beings afterall. And even kids with autism have a way of picking up what's a real situation vs. a pretend one, even if that can't put it in words.

Anything in life, try something, get feedback, revise . . . now, the ABA people can do this but only to a very limited extent. They are likely to say that aren't being purists enough, they not trying hard enough, or they're not being supported at home, again, all like a religion.

ABA is one tool in the toolbox. Yeah, it can be valuable, but it's only one tool.

Say you'd like to observe some of the sessions. This place has one-way mirrors. Or, if an ABA trained counselor is doing a session in your home, you can be doing something in the kitchen or otherwise kind of casually monitoring what's going on.



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01 Oct 2010, 4:10 pm

jat wrote:
. . . Since your son is already 4, it is critical that you get the evaluations underway asap - things take painfully long in these systems, and you want things to start soon! . . .

If it takes five months to get an evaluation and a "plan," what is lost is any kind of dynamic process. The "plan" is attempted much longer than it needs to be, even if it becomes obvious almost immediately that it's not what your son needs.

Whereas if you hire an energetic college student (and go easy hiring a psychology student as they're likely to try and intellectualize the whole situation), the student can try four different things the very first week if needed. Just hire a good business student or a geology student or humanities student, or yes, even a psychology student, and tell them, 'I don't want you to analyze my son. I want you to help him. Let him roll with his strong suits, and matter-of-factly address any deficiencies.'

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And I suppose this is a lot like school itself. Yeah, you want to engage the system and see what it has to offer. But often where the real learning occurs is when you try things on your own.