Finding someone experienced with 2e autism

[4KookieKids]

I might add that I read alot of different things, but it just seems like the list of things here in the "components of an effective ABA program" are things we're already doing (with the exception of peer training and story based interventions - though I was reading more about those last month).

 

http://www.appliedbehavioralstrategies.com/what-is-aba.html

[PeterPan]

Lecka has talked about this before, but there's ABA in the strictest sense of the term (contrasted with RDI, PRT, whatever) and then there's ABA the umbrella term to get insurance coverage.

 

So when I say I brought in ABA, I brought in an umbrella of service.  She has LOTS of training in LOTS of areas.  They call it ABA, but she can bring in RDI, anything.  Umbrella term.

 

That link was pretty helpful in the sense of letting you see nuances of what they do.  You're actually asking a good question about what would change if you brought in a behaviorist vs. using your p-doc, yes?  My behaviorist is on-call at any time.  I can write her ANY time, call, anything.  The behaviorist actually comes in and works with the kid.  She works through social thinking curriculum, plays, bonds, is able to make demands and increase demands, works on self-regulation.  She can help problem solve, sure.  She coordinates the rest of the people on your ABA team.  Bringing in additional workers gives you more time when he's working on goals (self-regulation, behavior, academics, intervention, play, speech, anything).  It gives me a break so *I* don't have to be ON all the time.  And, most importantly, it helps skills generalize.  He needs to do things with multiple people, multiple settings, so the skills GENERALIZE and are there no matter who he's with.  

 

So yes, it would be a HUGE step up as far as what you'd actually get done.  No, it's not going to be this constant flow of man I NEVER could have done that.  Of course you could have.  You're bright, dedicated, etc. and can do these things.  But you can't do it all the time and the dc needs the chance to do them with other people.  It's not good enough to have the skills but only when Mom is there supporting.  

 

It really boils down to money and funding, not whether it's good.  It would be good.  It's only a question of what you can make happen.

[4KookieKids]

Lecka has talked about this before, but there's ABA in the strictest sense of the term (contrasted with RDI, PRT, whatever) and then there's ABA the umbrella term to get insurance coverage.

 

 

So when I say I brought in ABA, I brought in an umbrella of service.  She has LOTS of training in LOTS of areas.They call it ABA, but she can bring in RDI, anything. Umbrella term.

Ok, I apparently need to look up what all these acronyms mean! lol. Maybe I'll come back with questions after I look up RDI and PRT and whatever other rabbit trails that leads me down! :)

 

That link was pretty helpful in the sense of letting you see nuances of what they do.  You're actually asking a good question about what would change if you brought in a behaviorist vs. using your p-doc, yes? My behaviorist is on-call at any time.

 

I can write her ANY time, call, anything. The behaviorist actually comes in and works with the kid. She works through social thinking curriculum, plays, bonds, is able to make demands and increase demands, works on self-regulation.;She can help problem solve, sure. She coordinates the rest of the people on your ABA team.Bringing in additional workers gives you more time when he's working on goals (self-regulation, behavior, academics, intervention, play, speech, anything). It gives me a break so *I* don't have to be ON all the time. And, most importantly, it helps skills generalize. He needs to do things with multiple people, multiple settings, so the skills GENERALIZE and are there no matter who he's with.

What is a p-doc? The lady we see is a clinical psychologist who coordinates with our normal pediatrician (he's the one who referred us to her originally) and referred us to the OT for a sensory processing eval. I threw her card away a long time ago (when we programmed her number into my phone...) but I'm pretty sure it said something along the lines of "cognitive behavioral therapy." But she does see us as a family - so do you mean someone else who would work with him alone while I'm not there? I love the idea of having a bit of a break sometimes - for my own sake, as well as the sake of my three younger children - but I'm not sure how this all works yet, so I hope you don't get tired of my questions! :)

 

So yes, it would be a HUGE step up as far as what you'd actually get done. No, it's not going to be this constant flow of man I NEVER could have done that. Of course you could have. You're bright, dedicated, etc. and can do these things. But you can't do it all the time and the dc needs the chance to do them with other people. It's not good enough to have the skills but only when Mom is there supporting.

 

 

It really boils down to money and funding, not whether it's good. It would be good. It's only a question of what you can make happen.

This is good to know. Thank you. I'm pretty sure our insurance is a pretty decent plan and would cover whatever we needed, though I can't say that for sure since I don't really know what we need yet. :) Edited November 8, 2016 by deanna1ynne

[PeterPan]

Sorry, p-doc is psychiatrist.  Your other post was on the first page and I read so quickly I got it wrong.  :)

 

I felt like that when we first got our diagnosis.  It was like ok, now what.  And the school asked what we wanted to make happen, and I was like ok, whatever I'm supposed to make happen...  Like we want to do a "good job" but we don't quite yet know what that means!  

 

So remind us, she got diagnosed with ASD2?  Again, it's all on the first page of the thread and I don't remember.  ASD, by definition, requires support.  CBT is good for some things, but it's not going to step up and be ABA.  ABA (umbrella) can work on behaviors, social skills, self-regulation, motivation, on and on, just keep listing.  You must have SOMETHING going on, or your dc wouldn't have gotten an ASD diagnosis, kwim?  ABA gives you the chance to clone yourself, to have more people working on the goals.  

 

Yes, ABA is data-driven.  When you're in the moment, it's very hard to step back and see the meta-level or notice patterns.  So it gives you the chance to have someone ELSE, someone GETS AUTISM, looking for patterns, taking data.  Then they can help you make data-driven changes and interventions.  The data can get you to solutions faster, because you realize more quickly what is working and why.

 

Gotta scat.  Later.  :)

[4KookieKids]

 

So remind us, she got diagnosed with ASD2? Again, it's all on the first page of the thread and I don't remember. ASD, by definition, requires support. CBT is good for some things, but it's not going to step up and be ABA. ABA (umbrella) can work on behaviors, social skills, self-regulation, motivation, on and on, just keep listing. You must have SOMETHING going on, or your dc wouldn't have gotten an ASD diagnosis, kwim? ABA gives you the chance to clone yourself, to have more people working on the goals.

 

Summary is: Oldest child is a boy, 7 (newly, bday in Aug), relatively bright/advanced, and diagnosed this week with ASD, level 2, with a referral for sensory processing disorder and another for adhd.

 

 

His most problematic areas (according to the GARS) were cognitive style (fixed interests, characteristics), emotional responses, and social communication. That's pretty much inline with our experience as well.

 

 

The psych has been seeing us for several years and says she can certainly do ABA (said something about having at least twice the number of credits in the area that are usually required to be certified), but she finds it more helpful for the 5 and under age group because kids his age start thinking for themselves a lot more (those weren't her exact words, and I'm not really sure what that has to do with ABA...). She put us in contact with a place in town that has some social groups (I don't know if that's the right word? groups for asd kids to learn and practice social stuff) and does a lot with asd kids (as well as the two referrals for following up on the sensory and adhd issues). She said we're more than welcome to see the other practice (that focuses almost exclusively on asd) for everything if we'd rather, but that she also has the experience and training to help us as well so it's totally up to us how we want to proceed.

[PeterPan]

Can you find an actual BCBA, a behaviorist?  It's true, sometimes a BCBA *is* a psychologist who has that added training.  

 

Our stuff is all in-home.  No, I would not be satisfied with social skills groups.  I would encourage you to take the time to look at ALL your options for a behaviorist/BCBA before choosing.

Edited November 8, 2016 by OhElizabeth

[4KookieKids]

Can you find an actual BCBA, a behaviorist? It's true, sometimes a BCBA *is* a psychologist who has that added training.

 

Our stuff is all in-home. No, I would not be satisfied with social skills groups. I would encourage you to take the time to look at ALL your options for a behaviorist/BCBA before choosing.

 

Yes, there are options for them in my area. I think I'm nervous about offending someone (we really like this lady!) by going somewhere else. If all treatment/care would be equal, I'd just as soon stay with her. It's hard for me to think about going somewhere else when she's nice and says she can do it, because I feel like I'm basically saying I don't trust her judgement...

 

How do you really look at all your options? Do you talk with the different people? I feel like anyone can *say* they're good, but how do I know?

[Lecka]

You can totally, totally do both and that would be very normal.

 

My impression is ABA may work more directly with the child and for more time together.

 

Doesn't mean what you already do isn't valuable and helpful.

 

I don't think it has to be either/or.

 

This is an example for me. Let's say I have an issue that my son wants to play in a certain way and gets very upset if it doesnt happen the way he has in mind.

 

For ABA they might plan to actually play with him and try to bring in small bits of flexibility that don't push him too much but that challenge him a little, while adding value to his play (so he wants to play, if it is more fun with the therapist than alone).

 

Not that other therapists don't do the same kind of thing. But for my insurance coverage I can get many more hours a week for that to happen with ABA.

 

That is just one example, but it is an example.

 

There can be more time to have the therapist doing stuff, more than talking to the parent and then the parent does stuff.

 

That is also very important. They are both good.

 

You probably have some of that already with what you are doing, but maybe your time is limited.

 

That is kind-of my guess from people I know here.

[Lecka]

There are not a lot of options in my area AT ALL so I have not had to compare and try to figure that out.

 

But I think look for how well they get along with your child, if you agree about goals, if goals make sense. That kind of thing.

[PeterPan]

Just agreeing with what Lecka is saying.  My ds gets 1 hour a week with the behaviorist and 8 hours a week with his other, MUCH LESS EXPENSIVE, ABA team members.  It just sounds bizarre for the psych to say she'll "do ABA" to him.  She's going to come to your home and do what my behaviorist does?  Or she's going to be the consultant and hire a team to come in?  Behaviorists here are (average) $100 an hour, while an ABA worker (now called RBT if they ahve that label) is $20.  So you can't afford to do EVERYTHING with the phd person, not if you want hours, not if you actually want stuff done. Phd psychs here bill at $200-300 an hour. And 10 hours a week is a pretty normal amount.  In fact, he might even benefit from more.  That 10-20 rec would be a pretty common starting place.  So what is she saying she'll do?  All of that or supervise a team or just one hour a week?  

 

Don't get in turf wars.  The psych has put you in a bad position, framing it the way she has.  You're free to choose anyone and SHOULD, and the psych will professional enough to accept that.  Besides, there's what she would recommend for people in school, and what you need to make happen when you're at home.  I could see what she's saying if he was in school, also getting services there.  But you are the ENTIRETY of what he's getting, and you would benefit from an in-home team giving you 10-20 hours.  So you want someone who has those employees to contract and make that happen.

 

How do you know if they're good?  Well, actually being a certified BCBA is a good start.  My behaviorist was doing it before BCBA and isn't certified, but she came recommended by others in the homeschool community here.  Some people work with early intervention.  It's a bit different beast when you're talking about a 7-12 yo dc at home.  My person works with all ages, into adults.  That gives her more spread.  I don't think you want someone whose sole experience is EI (5 and under), kwim?  You want someone you can talk with, someone who is trained in a lot of modalities, someone who *explains* things well, someone who returns your texts or emails promptly, someone you feel you can collaborate with to problem solve.

 

I would just call around and talk with people.  Usually they'll come meet you for an intro meeting to see if it's a good fit.  You'll see how they interact with your dc.  Ours listened a lot at that first meeting, did some trying to play with ds, and then at the end showed, in a single moment, that she was QUITE capable of handling him and working with him.  She was fully, blooming pregnant, and he was getting aggressive with us because we were no longer talking with him.  She turned and said, very quietly "Are you making a good choice?" and I was like WHOA, you don't understand, he's so autistic and such a victim of his neurology he CAN'T make a choice, all this horrible stuff just happens to him!!  And I could see that she viewed him differently than I did, as someone capable of making choices, of no longer being a victim of his body, and of someone who could handle him even when fully pregnant, meaning she had no force, no strength to apply, and even some danger.  I mean, think about that.  

 

So I think you'll know.  You want them in your home, or at least I would encourage you to let them in your home.  If you want change, you'll need hours, time spent, a team approach, workers in your home.  It has brought us peace.

 

 

Edited November 8, 2016 by OhElizabeth

[4KookieKids]

Just agreeing with what Lecka is saying.  My ds gets 1 hour a week with the behaviorist and 8 hours a week with his other, MUCH LESS EXPENSIVE, ABA team members.  It just sounds bizarre for the psych to say she'll "do ABA" to him.  She's going to come to your home and do what my behaviorist does?  Or she's going to be the consultant and hire a team to come in?  Behaviorists here are (average) $100 an hour, while an ABA worker (now called RBT if they ahve that label) is $20.  So you can't afford to do EVERYTHING with the phd person, not if you want hours, not if you actually want stuff done. Phd psychs here bill at $200-300 an hour. And 10 hours a week is a pretty normal amount.  In fact, he might even benefit from more.  That 10-20 rec would be a pretty common starting place.  So what is she saying she'll do?  All of that or supervise a team or just one hour a week?  

 

Don't get in turf wars.  The psych has put you in a bad position, framing it the way she has.  You're free to choose anyone and SHOULD, and the psych will professional enough to accept that.  Besides, there's what she would recommend for people in school, and what you need to make happen when you're at home.  I could see what she's saying if he was in school, also getting services there.  But you are the ENTIRETY of what he's getting, and you would benefit from an in-home team giving you 10-20 hours.  So you want someone who has those employees to contract and make that happen.

 

How do you know if they're good?  Well, actually being a certified BCBA is a good start.  My behaviorist was doing it before BCBA and isn't certified, but she came recommended by others in the homeschool community here.  Some people work with early intervention.  It's a bit different beast when you're talking about a 7-12 yo dc at home.  My person works with all ages, into adults.  That gives her more spread.  I don't think you want someone whose sole experience is EI (5 and under), kwim?  You want someone you can talk with, someone who is trained in a lot of modalities, someone who *explains* things well, someone who returns your texts or emails promptly, someone you feel you can collaborate with to problem solve.

 

I would just call around and talk with people.  Usually they'll come meet you for an intro meeting to see if it's a good fit.  You'll see how they interact with your dc.  Ours listened a lot at that first meeting, did some trying to play with ds, and then at the end showed, in a single moment, that she was QUITE capable of handling him and working with him.  She was fully, blooming pregnant, and he was getting aggressive with us because we were no longer talking with him.  She turned and said, very quietly "Are you making a good choice?" and I was like WHOA, you don't understand, he's so autistic and such a victim of his neurology he CAN'T make a choice, all this horrible stuff just happens to him!!  And I could see that she viewed him differently than I did, as someone capable of making choices, of no longer being a victim of his body, and of someone who could handle him even when fully pregnant, meaning she had no force, no strength to apply, and even some danger.  I mean, think about that.  

 

So I think you'll know.  You want them in your home, or at least I would encourage you to let them in your home.  If you want change, you'll need hours, time spent, a team approach, workers in your home.  It has brought us peace.

This was so helpful in helping me understand how ABA is different than what we're already doing with the psych. Thank you. It has also helped me to feel less guilty with calling around to get information. Apparently, my state didn't cover ABA (or some such mess - I'm a little unclear on the details but someone on the phone was telling me this today) until 2014, so we have very few ABA providers because they all left the state many years ago so they could find work.

[Lecka]

Another possibility we have done is to have someone attend activities with my son.

 

I had a lot of help with Sunday School also. I have times where people are saying to me "what can I do" and I don't necessarily know, and having someone come means that person can make suggestions. Some people at my church have really appreciated it.

[Lecka]

Where I live, the psychologist will never observe in person.

 

They will do phone calls and email with school.

 

They won't observe activities or provide support at activities.

 

Some people doing ABA do and some don't.

 

You definitely don't have to have someone come in your home.

 

It is a good choice for us for some reasons. But if you don't need or want it, you don't have to.

 

For the hours -- more hours sounded weird to me.

 

But now I look at it as able to have more time doing fun things to build rapport (pairing). It takes time pressure off and lets it get out of "I do this at the office" mode or "all we do at the office is stuff I don't like" mode, which are things my son has been prone to in the past.

[Lecka]

But I think if you think about your concerns and times you notice something come up, and someone will address those things and it makes sense, and it is enough help (you may not NEED more help than what you can get from an hour a week at the psychologist office -- it is the case for many kids), then I think look across different therapies for what you need.

 

Look for someone who gets along well with your child.

 

Look at if it is the right amount you need/want.

 

I think that when people are saying "here is what is going well" a lot of times they are saying the same kinds of things whether it is one kind of therapy or another.

 

I also have very limited options where I am, and I think in other places it can be limited too, and maybe the person who is good is from a certain field or approach.

 

At the same time I am a huge proponent of ABA! But I don't think it is the best or only choice, and can be a worse choice for various reasons for various circumstances.

 

It is definitely a good choice for us.

 

I do have an opinion that for Level 2 I wonder if my assumed model of "1 hour a week at the therapist's office" is enough for starting out.

 

Especially I think there are good things that people learn in their first year of ABA and if their child stops, the parent still has that information and those approaches. I don't think you are comparable to a parent who does have that year of parent training or "oh this is a way to handle this."

 

Edit: otoh maybe you already are well supported by the person you are seeing in that way!

 

Already knowing her counts for a lot.

 

I think if you are feeling confident about how most things are going and not so much like maybe things are not going that well.... tells you some how much you need.

Edited November 8, 2016 by Lecka

[kbutton]

We have found CBT to be of somewhat limited use to my son. I think there are different cognitive styles, and having ABA is more concrete to him than CBT. He's a thoughtful kid, but not really reflective or analytical, if you know what I mean. ABA measures things he can get a grasp on. CBT is probably a much better fit for my other son (not ASD--I don't want to insert confusion there) because he's a reflective and analytical kid. 

 

Also, the stuck thing is REAL. To quote from a CBT article I just googled: "The cognitive model hypothesizes that people’s thoughts and feelings are not determined by a situation, but by their interpretation and construction of the situation.  Recognizing this discrepancy, CBT seeks to modify the dysfunctional core beliefs that result in automatic thoughts which trigger emotion in any given situation." (http://brownbackmason.com/articles/10-principles-of-cognitive-behavioral-therapy-cbt) 

 

My ASD kiddo is not usually willing to take a broad enough perspective to really do what is listed there. He often cannot conceive of a person considering thought X rational, so clearly, he's right. Or, he has many layers of rules (right or wrong or both) built up over time in his head that he can't really articulate or reflect on. They are just stuck there--it will take a specific, concrete situation to dislodge the ideas he's gotten all mixed up in his head, and even then, something might have to happen that shows X really is rational with very specific proof to undo those incorrect ideas. He's always searching to figure out what all of us non-ASD people are thinking, what motivates us, etc., and because his theory of mind is not exactly typical, then his conclusions about the why, how, etc. are often not on par with what neurotypical are actually thinking (but it's logical TO HIM). Add in things like not being able to identify tone of voice, facial expressions, etc...it's crazy at times. Our kiddo could tell you if an expression was good or bad, but those were the only two buckets he had for emotion! There was no understanding of nuance or that you could be a little annoyed at him without being angry. It was really creating a bad dynamic. Our behaviorist has worked on that stuff with him, and it's been just a thing she does, not ABA. If he had needed motivation to learn that, she would have used reinforcers and done more ABA-specific things. But, as a behaviorist who knows this stuff, she can see when it's needed or not needed in a way that a different kind of therapist might not realize. We do use ABA-specific techniques for other things, like self-direction, taking feedback, etc.

 

In addition, the behaviorist works to place demands on him that are expected and typical and help him learn to meet those demands. She can figure out if the demands are too high, too low, how fast we should progress, what is fair to him, what is not, etc. It's really much more precise than just trying to change someone's thought patterns. In fact, my son often has to have someone "prove" to him that something is valid. Using ABA to do things he's not convinced about smooths that path, and then he looks back and says, "That's actually pretty cool" or "That was really helpful." But he would never consider other options without that concrete plan. As he gets older, those non-neurotypical things really come out of the woodwork. We knew he was different at all different ages, but it really didn't become clear just how much he kept inside and how much was all mismatched inside his thinking until he got to 9, 10, 11 y.o.

 

If you've ever watched Big Bang Theory, think about how long it takes to convince Sheldon of something, except, of course, when someone is able to take advantage of some naive idea he has. He has his own set of rules that are far more extensive than a NT person would have. He has stuff he does because other people are inexplicable to him, and doing those things make him feel better. They joke all the time about having m and m's if you have wait in line with him somewhere, etc. There is some truth in all those things that we find funny even if it's not entirely accurate. My son can be like that--sometimes you just have to do something you don't like, and you are surprised later at how nicely things work out, lol! 

 

Anyway, that is my unscientific way of describing how we benefit from ABA. 

[PeterPan]

I will say that when we started ABA, they asked me what I wanted to have happen, and I really didn't have this laundry list of things I wanted done/fixed/worked on.  You would THINK with all we had going on that I would have, but I didn't.  I think it's because I had no vision for what COULD be.  I was so USED TO HIM that I couldn't say what could improve and therefore couldn't make lists.  So for us, I needed someone who brought that vision for the table, someone who would talk to me straight (even if it scared me!) and push the envelope on my expectations.  In other words, I wouldn't assume you need nothing just because you can't make a list.  You definitely need assistance, with an ASD2 diagnosis, and you need hours.  It's just that you're so close to the situation that it can be really hard to see the path forward, see what the goals should be, etc.  The behaviorist can come in with more of that birds' eye view and get you there.

 

Fwiw, we started with our hours low and worked up.  It's not like you have to start at 10 or 20 hours.  They might just start at 1 or 3 hours, get a piece going, bring in another piece, working up slowly.  My ds needed some time to build enough connection that he could understand he would ENJOY having more hours.  Does that make sense?  They didn't jump in with lots of hours at first.  And like Lecka we have more hours as an option, even weekends.  Right now I bring her in on Sundays in the afternoons, because I need a break.  It gives him direct attention, which keeps him from going feral (my term) and helps him transition into Mondays better.  I have considered adding her for church hours too.  I haven't done it yet, but it's one of those things on the table.  But it's something you can build up to, adding more as you get more confident in your workers.  

 

It took *me* time to learn to trust the people and conclude what they could do, how comfortable with it I was, etc.  

 

If you haven't seen the tv series Speechless yet, you might go watch it.  You can stream it on the ABC app.  In the first few episodes, they go through the struggles with changing aides, having the mom turn over some of that control, her feelings about that.  It was really touching, and it was a lot of how I felt with bringing in ABA.  

[PeterPan]

Kbutton's point about talk therapy vs. doing therapy (in context, in your home, in LIFE) is really, really important.  Lots of people can talk, but that doesn't mean they can USE the skill, when push comes to shove, in context.  My ds can name tons of emotions, but when he's (tired, hungry, whatever), he's going to struggle to say he's hungry.  When you bring the work into context, into life, you're getting it applied, generalized.  It's a powerful tool.

 

My ds is funny about his ABA time.  He runs to them, enjoys them, etc, clearly enjoys them, but then he'll say he doesn't want them to come back ever, blah blah.  I think it's really basic though: ABA is fun, but it's WORK.  Because it's work, it's hard and something they want to shun.  And sorry, but I can't help that.  Play is WORK when you have autism.  A LOT, lot, lot of our ABA time is spent in play.  All kinds of play, but play.  So should my ds not get age-appropriate play skills because it's hard work and something he'd rather not bother to do?  Obviously not.  

 

ABA brought up a lot of emotions for me.  It's not like some easy, obvious thing.  You have people online saying you'll ruin your kid, and there, I'm sure, are components you could do that would be pretty wow.  You want to take time to make sure you're on the same page with your people.  I always say they don't do ANYTHING I wouldn't be willing to do myself, and I really mean it.  

[4KookieKids]

Thank you very much. I contacted three different folks who offer in-home ABA in my area, and will hopefully hear back from them in the next few days. I'm not sure exactly what to tell our normal psych, since I feel like I'm sort of going against her suggestion, but I feel like there's a lot that could help from having someone here with us (though I'm not sure, because he definitely has a normal facade he can put on in front of others for a decent period of time...). Maybe I'll just use my hubby as a scape-goat, since it's just easier to say "Hubby really wants to try it for a little bit and just see how it works..."

 

 

I do feel like I'd like to keep seeing her, because she gives me a lot of tools to use with him (and all the children, actually), and I really benefit from and appreciate that. But I think I really could also use a bit of a break and someone else working with him some. I wish I could find something to take in to talk with the psych about regarding older kids benefiting too. So far, it's been lots of individuals/anecdotal stuff, which is good, but not exactly scientific. Oh well! :)

[4KookieKids]

Is there anything in particular I should ask or look for with regards to being bright or is that irrelevant to ABA? I'm a little wary of bringing someone in who won't see things or just sees high functioning, but maybe that's just old fears because I don't have experience with ABA yet.

[PeterPan]

Look, your fears are normal.  When our behaviorist came in, our diagnosis was in dispute, with different people saying different things.  I wondered the same thing too, if she'd come in and just feel he was normal.  But it's not going to be that way, not with an ASD2 diagnosis, and not with ASD1, frankly.  This will be someone who deals with ASD a LOT, and they'll know what they're seeing.

 

That's wonderful that you've found several options!  If they do free initial meetings (or even if you have to pay), I would meet with them, in your home, and just see what you think.  I think you'll know what you want to do after you meet them.  And if you don't and need to talk it out, you can.  But I think when you meet them you'll see differences and have a gut sense.  

 

Don't tell your psych anything right now, kwim?  It's going to work out.  I agree you need that level of support, absolutely!  You might find the behaviorist you bring in is really stellar for that and able to problem solve.  Our behaviorist is someone I can write/text/call at ANY time.  No extra fees.  And while I get billed for an hour a week, I get 1 1/2 hours (1 hour with ds, 1/2 hour + with me) AND the instant help any other time.  It's a lot of support!  So you could be doubling your support or transitioning your support.  It's all going to work out.  Meet the people, gather your information, and don't feel like you have to decide or say anything till you've got things in place and know what your plan is.  

 

You don't have to prove anything to the psych.  You're pursuing an evidence-based practice for a diagnosed condition.  It may be that ABA services are terrible in your area and your psych knew this and was trying to save you, fine.  But I would be a *little* bit cynical and think that *probably* at least one of those behaviorists is going to be really good and skillful and ready to give you this stepped up level of in-home support.  There's data to start ABA at ANY age.  In fact, ironically enough, the time period for focused/intense ABA is the same no matter when you start.  Like there's this magic number of three years.  Well it's three years whether you start at 3 or 7 or 12.  It's not like the need or benefit just goes away.

 

Keep us posted on what you find out as you meet with the people!  I know it's hard.  Hopefully you'll like some of them.  This is about increasing support, and that's all you have to know.  You want increased support and this is a way to get it.  Keep us posted.  Hopefully it will be good!  :)

[PeterPan]

Yes, my ds can be having a great day and someone who is skillful with autism sees it.  That's why they're a behaviorist.  ;)  On a bad day, it's obvious to a casual stranger even.  And odds are, when they come in, things are going to happen that you aren't anticipating.  Your ds isn't reacting to you or other people he's used to.  He'll be reacting to a stranger, and it's on his turf, with his possessiveness or anxiety ready to kick in.  For my ds, having a good day meant he didn't bug us, hit us, interrupt us.  Well even that kind of "good" day was actually noteworthy, because they came in and went wow he didn't even notice I was in the house 2 hours and then wow he didn't interact with me or respond when I tried to talk with him and wow he got aggressive when I touched his xyz and he...  

 

They'll see it.  It's going to be ok.  The question is not does he have autism.  You've already answered that.  The question is do you feel comfortable working with this person, are they someone you can collaborate with.  I think you'll know.  And someone could be really good with one person/family and not a great fit with the next.  You'll know.  

[PeterPan]

If you can get the book Stop that Seemingly Senseless Behavior it would make you more conversant on some basic terms.  Then you can ask them if they will have you log behavior, if they do FBA, etc.  The book is helpful.  I agree there's sort of a trust, like we don't know enough to evaluate these people clinically.  You can ask what they're trained in and what extra training they've had.  Usually they can list some techniques.  You can ask them, if you want, what they DON'T do.  That could be interesting.  Some might have really strong feelings on that.  If your ds has any particularly strong issues, you could ask how they handle those.  You could ask if they use social thinking materials.  

 

But I agree, it's sort of starting in and trusting, based on their personality, that they've been thorough in their own learning enough to come in and be a helpful.  But we'll hope for the best!  If they're very rigid or dictatorial or hard to talk with, that would be bad.  You want someone you can talk with and you're hoping they've gotten training in a variety of techniques so they're conversant in things and can pull from ideas.  

 

Ask who they use for ABA hours, whether it's college students or what.  That's definitely something to talk about. Like if someone has NO workers and wants to do it all themselves, that would be a little rough.  Ask if they're going for their BCBA, etc.

[4KookieKids]

Don't tell your psych anything right now, kwim? It's going to work out. I agree you need that level of support, absolutely! You might find the behaviorist you bring in is really stellar for that and able to problem solve. Our behaviorist is someone I can write/text/call at ANY time. No extra fees. And while I get billed for an hour a week, I get 1 1/2 hours (1 hour with ds, 1/2 hour + with me) AND the instant help any other time. It's a lot of support! So you could be doubling your support or transitioning your support. It's all going to work out.Meet the people, gather your information, and don't feel like you have to decide or say anything till you've got things in place and know what your plan is.

 

 

Don't they automatically share medical records? I know my psych and my ped share communication and I think the OT as well. Is there anything I need to say/do when I meet with them to avoid that sharing at this point?

 

 

Thanks for the encouragement that I don't need to worry about folks not seeing it, as well. It was interesting to see the results of our testing, because I had him right at the cut-off of levels 2 and 3, whereas my hubby and family friend had him almost dead center level 2. But of course, I'm the one who's with him all day, every day. I thought we'd be further apart, just from looking at their answers compared to mine, but I guess it all somehow matched up fairly close. Seems a little strange, but reassuring nonetheless. :)

[Lecka]

I have to sign papers allowing them to share information. You can ask to change the form. I think you probably signed a form at some point allowing it, and now would just ask to change the form.

 

I think in a previous post you say your psychologist said "do whatever is best for you." So I think -- maybe she meant that. I think it is fine for you to look at options. If you picked a different person providing the exact same service -- okay, I think that would express dissatisfaction.

 

But if you choose a different service model -- then that is just not personal towards her.

 

It is not like you are switching to a different stylist at the same hair salon, where it is all the same except a different person.

 

It is like if you also started getting massages even though they gave a quick neck massage at the salon. That is not personal.

 

She also may not have wanted to overwhelm you! I see that a lot. A lot of "let's not overwhelm the parent" when they give the diagnosis.

[4KookieKids]

She also may not have wanted to overwhelm you! I see that a lot. A lot of "let's not overwhelm the parent" when they give the diagnosis.

 

Yes, I do think she operates this way. She was also very "do what's best for you" before hand, even though she said this past week (hindsight? wishful thinking? genuine? it's not clear to me, bc I like her and think she's probably genuine, but it *seems* a little self-serving...) that she's known since the beginning, but didn't want to push us since I was very resistant to any sort of labels or diagnoses (until things got completely out of hand).

 

Thanks. :)

[PeterPan]

Money drives privacy too.  Our ABA is paid for with our state disability scholarship, so reports go in to the state dept of ed.  But I don't *think* I've ever signed anything giving her permission to talk to the ped.  I think the only time I would have signed forms was allowing one practitioner to send another person doing evals the previous evals/reports.  We had a lot of that going on.  

 

If your insurance is paying for it, they'll probably get something (codes when billing hours, something).  But no, if you sign nothing with the behaviorist, they'll never send anything to the ped or psych.  They only send papers if you give permission.  

 

It's hard to understand what people mean when they don't say what they mean.  I'm a really straight up person, so if that's what I want, I just tell the person straight up don't leave it to inferences, tell me straight.  But that's not the norm.  Normally they're going to beat around the bush and wait for you to figure it out.

 

You're doing the right thing bringing in help.  It just remains to be seen if you'll like the people you interview.  Keep us posted!  :)

[PeterPan]

And yeah, I have a little problem with a practitioner saying they saw level 2/3 ASD but said nothing for a year while they took your money for counseling and that NOW they can do awesome intervention for you.  That's like saying you're a really good surgeon, while you watch someone bleed to death.  Absurd.  

 

But you like her, so we don't say that.  I'm just saying it's ok to bring more people on your team. I learn every time I interact with new practitioners, even if they're not the ones we stick with.  :)

[4KookieKids]

Well phoey. Apparently there's a glitch in my insurance provider system that makes it so that only license providers can be covered, and not certified ones. So since most ABA providers in my area are certified but not licensed psychologists, none of them are covered by insurance. They're working to fix the provider enrollment system... but it probably won't be fixed until next summer. :P

[Lecka]

Depending what they require, there may be people further away who supervise people in your area. There is a lot of "so-and-so is supervised by so-and-so."

 

Worth a shot to see, maybe.

 

Do you know exactly what your insurance requires? Have you checked the bacb website?

 

My son has a supervisor right now who is a psychologist, that I have never met in person, but who Skypes in about once a month or so. His real main therapist is required to be supervised by my insurance. Anyway -- she (the supervisor) works 2 hours away from where we live!

 

Now maybe nobody is being supervised in a way that works for your insurance. But maybe.

 

Edit: often the credential you are looking for for ABA is BCBA. Is that what your insurance wants? You can search people with that credential on the babc website.

 

My son's real main therapist has been a BCaBA for years and I really am satisfied with her. But our insurance changed to make her have to have a different supervision, and that is why we have the Skyping supervisor now.

Edited November 10, 2016 by Lecka

[4KookieKids]

 

Depending what they require, there may be people further away who supervise people in your area. There is a lot of "so-and-so is supervised by so-and-so."

 

Worth a shot to see, maybe.

 

Do you know exactly what your insurance requires? Have you checked the bacb website?

 

My son has a supervisor right now who is a psychologist, that I have never met in person, but who Skypes in about once a month or so. His real main therapist is required to be supervised by my insurance. Anyway -- she (the supervisor) works 2 hours away from where we live!

 

Now maybe nobody is being supervised in a way that works for your insurance. But maybe.

 

Edit: often the credential you are looking for for ABA is BCBA. Is that what your insurance wants? You can search people with that credential on the babc website.

 

My son's real main therapist has been a BCaBA for years and I really am satisfied with her. But our insurance changed to make her have to have a different supervision, and that is why we have the Skyping supervisor now.

I will call back tomorrow and ask, but the lady today seemed very knowledgeable about the situation. She says that the credential of BCBA is a certification, and not a license (which seems to agree with what I read on their website http://bacb.com/bcba/), and the way their provider system is set up it will only allow licensed providers to be approved providers. She said it's terrible, and behind the times since ABA started being covered (mandated by the state, she said) in 2014, but that it's not at the top of the priority list for folks who make these decisions and hence why it probably won't get addressed until spring or summer of next year. She referred me to one place about an hour away that is the only place to have people who are both licensed and also BCBA certified, but they only do center stuff and don't do in-home ABA.

 

I'm keeping my fingers crossed because I did find one other person who's actually in my town who has LMHP and BCBA after her name (the website above has her listed as someone who supervises others as well), but it's not clear she'll take my insurance either and I'm waiting for a call back from her.

Edited November 10, 2016 by deanna1ynne

[Lecka]

Oh, that is frustrating. Good luck with the place left on your list!

[4KookieKids]

So the only place in the state that is covered by my insurance and does in-home ABA is an hour away and does it "virtually." The set up cameras in your home and send a "trainer" out (not sure what qualifications a trainer has, except that they're the one to work with your kid) and then the actual behaviorist watches 5-10% of the camera footage to work with the trainer on a plan for the kiddo. Does that sound weird, based on your collective experience? I got on the waiting list (and who knows how long that will take to work through!), but feel a little uncertain.

 

Also, I don't know if this is ok to ask or not, but can someone please talk to me about ASD with respect to disability services? Is it considered a disability? Is it something you get SSI for? I would assume not (at least in all but the most severe cases) since it's becoming to prevalent, but I don't really understand a lot of this right now.

[Lecka]

It depends on the trainer (s).

 

The model we have is also that a supervisor supervises only a small amount of tIme and plans the programs.

 

But I am mega-satisfied with our BCaBA. But she requires supervision!

 

But then, we also have RBTs. And, they DO need guidance. I wouldn't be comfortable with them never having in-person supervision (from the BCaBA). They just don't have the experience. For them we usually have college girls majoring in speech therapy in their Junior and/or Senior year. But for us, do they need to be personally supervised by the person who insurance requires to supervise my son's case? No. It is not necessary.

 

So I think it could be okay, or good, or it could also be bad. I think you will have to ask around and see. You also may be able to be picky about who your trainer is! But there are people who have a lot of training and experience but haven't finished their masters degree, who require supervision, and it is checking a box to some extent. And then there are newer people who really need training and supervision.

 

I am having a bit of an issue with someone who has been in the field for over a year, but she was not properly trained at her last job. They just didn't take the time or bother. She is new to us and my son's BCaBA. I am willing to work through it right now, but I am 3 years in and realistically there are benefits for my son to have new people, and also new people have to

start somewhere.

 

But when we were starting out or in the first year, it would not have been okay.

 

But with our agency, we got most-experienced people starting out, when we really needed it, and now *I am okay with* some growing pains with new people. This is not something anybody has to do -- I have said I am okay with it. But if I text the BCaBA with a concern, I trust that she will take care of it, and usually she will come to supervise in person then.

 

So I think it depends. I am happy with our satellite office and skyping, but I know that the person from here drives up and they really do review my son's case (look at his data etc) and I know the BCaBA is good and does in-person stuff here.

 

If I had newer people with minimal in-person supervision I would not like it. But if they were sending in videos to meet an insurance requirement and ALSO had local supervision -- well that is somewhat our model and it works for us.

 

But I think it depends on the people.

 

And, how much training and experience the people working directly with your son have, and how responsive people are if you have an issue.

 

Like -- this just came up, and the BCaBA will be coming to my house to supervise the next session with the person. I also know.... at a certain point she will just lose her job if she doesn't catch on. But I think she is worth the effort, she has some good things going for her.

 

But my first year I had ONLY VERY experienced people.

 

But my son started in the severe range, and it is a mark of pride for me that he is doing so good now that he can have newer people. Also I am around and I do step in and give feedback myself sometimes. I am comfortable with that bc it has been a while and I know my son, I can give that little bit of advice or say "yeah he does that sometimes."

 

In his first year (and really more like almost 2 years) it would have not been appropriate at all.

 

Overall I think I would ask more about the model, and about how long it has been available

in your location, how long people in your location have worked for the agency, what training they have, how to resolve problems, and some things like that.

 

And I think it will just depend.

 

Anither thing -- it is common for someone who is in a masters program to be supervised by someone from the masters program, and that can explain some people who seem to be randomly supervised by somebody a long way away.

 

For my agency -- there are people doing their supervision through school and then also being supervised as part of their job. Bc it could be how their masters degree is set up, and then they also have a job.

 

Then other people are not on their way to a masters, they are going to work in another related field.

 

It is not a job where random people will stay. Ime at least. So if somebody has no related career goal or personal thing (like me -- I might do this later in life, but I have a personal reason), then they tend to quit. So when someone seems invested I think it is worth it.

 

But we usually have people doing the job a shorter time and then going to grad school in a related field.

[Lecka]

I don't know anything about disability or SSI. My state doesn't accept Medicaid money, so there are a lot of things we don't have here.

 

Also my husband is in the Army, so I go through military insurance, which is set up differently than a lot of things.

[Lecka]

To try to be clear..... there are supervision requirements set by my insurance. I consider it a bit unnecessary.

 

Then there is supervision my son's agency does that is part of providing a quality service and providing quality training and making sure my son has quality and appropriate programs.

 

Then there is supervision required for certifications of RBT, BCaBA, and BCBA.

 

There is a lot of supervision!

 

I think the insurance stuff should be the bare minimum. It is checking a box. But if that box has to be checked, then it is very important bc you need them to meet your insurance requirements.

 

And then -- there is supervision that is people getting the training and in-person guidance they need, that may not fit in with the insurance requirements, but is needed to provide a quality service, so the agency does it.

 

My insurance has its own set of foibles, and are fond of changing their requirements every year. But we have good coverage and they are trying to make sure that quality services are provided. But since I am with a good agency it becomes hoops for the agency to jump through.

[Lecka]

Also I think if you have more options with a center, you can visit a center and talk to parents in the waiting room. If there is a center, I would say get on the list there, too, as a general

thing. Maybe you like it. Maybe you get services for 6 months and decide to switch to home-based when you move up the waiting list.

 

There are pros and cons to home-based and center-based.

 

Center-based has a lot of pros.

 

Here (at the local center) a major pro is that they build in a lot of social stuff. They also have collaboration between ABA, OT, and speech. They are all at the center and work together. There are other kids around and they can schedule you to have an hour of one thing and then an hour of another thing in a 2-hour block. Where if you were at home, and also did a social skills thing or speech or OT, you would have to schedule everything individually and drive around.

 

So I would definitely look into a center, too, and you might like that better anyway!

 

Locally I think for kids who also have a lot of OT needs, the center can be better than home-based. Also depending on what the social options are, it can be a better option.

 

My son is a twin and has a big brother, so they are who I want him to do well with. But for people with no siblings at home it can be hard to coordinate and arrange. Or maybe the siblings need a break. It is just how it works out for us.

 

Oh, also at the center they can see the same kids and I think it is easier than seeing some kids here and different kids there, I think it can be a lot easier on kids and more consistent, if otherwise it would be driving around and a different place every day.

 

I think they keep kids together from one session to another, more, instead of signing up and then if you sign up again it is all different kids, if you sign up for things individually that might be that way.

 

Also, there are kids who do great with siblings but not other kids, and then you need kids who aren't siblings.

Edited November 11, 2016 by Lecka

[PeterPan]

If you want to get the homeschooling working well, you're going to need in-home hours.  I would do whatever it takes to get in-home hours.  If that means moving, I would move.  

 

I'm being emphatic there, sorry.  What was the age of the dc?  Young child, a lot of kinks, a lot of behaviors, and you want to get homeschooling working well?  I'd get that in-home.  Otherwise you're asking someone to do something in a center and magically hoping it generalizes over to a radically different setting.  It's one thing to say center to school, sure.  They're both similar settings.  But center to home, not the same.  For my ds, he needs a consistent room.  He needs the same ORDER of instruction.  It reduces anxiety, makes it predictable, reduces behaviors.  If I have something new I want to bring in, I hand it to them first.  THEN I do it with him, after they've done it and had him work through how it feels, how it's ok, etc. 

 

So I personally would not go center to home, not with a young dc, not if you have a lot of behaviors, because it is going to take longer to generalize.  If you want to fix home, get the help in-home.  That's what has worked for us.  But we were in a real sticky point.  We couldn't sit around and wait.

 

Most of these people will meet with you.  Some things you just won't know till you meet them.  Yes, there are BCBAs in our area who work that way.  Think about it.  A high end BCBA is not going to drive an hour each way, not when she's billing $100 an hour already.  It would skyrocket your costs.  So yes to get that level of supervision sometimes it has these layers.  But that doesn't mean the people can't do a good job!  If the supervision is good, it will be good.

 

ABA is sort of deceptively simple.  It's simple enough that a 20 yo college student can do it, when they're trained, when they're supervised.  We are billed hours every week where our behaviorist and workers meet and plan.  Lecka's people do that, mine do that.  Planning hours.  That's when that training and behind the scenes and mind-melding happens.  And the worker has the text number for the behaviorist so they can problem solve on the fly.  

 

They have to spread around the top tier people.  Top tier people don't do all the work.  A lot of it is sort of entry-level people, these RBTs, but they have enough interest to stick with it.  It's not something people get into just for the money, because the money isn't good enough for what they put up with, not for people who just want a paycheck.

 

Adding: I'm saying all that, and I haven't used a center.  For us in-home has been really good, and I think it could be a really slow path doing it somewhere else, if the needs are imperative, if you need to change the dynamic. I think it's appalling your insurance doesn't have ANY way to provide in-home ABA.  

Edited November 11, 2016 by OhElizabeth

[PeterPan]

This is a total rabbit trailer, but maybe it will offer you hope.  :)  I'd like to just mention that even though things have been really hard, my ds is such a charmer to work with.  Like he really is FUN now!  And he's able to show all he is inside and be confident and blossom.  He's doing really well, expressing feelings and wishes, more able to self-regulate, more able to take on challenging tasks that he enjoys that fit his IQ. 

[4KookieKids]

Well, I talked with pretty much everyone else who I had calls out to today and the prognosis is not good. They either don't really do ABA, don't take our insurance, or don't do in-home stuff (and require the kid be at the center 5 hours a day). Moreover, I couldn't do any of those options and still see our current psych (there's some sort of issue with only using one provider for one type of service that I don't understand at all - like someone would really want to be "double-dipping" by getting extra therapy sessions that they didn't need?)

 

 

 

Here's hoping that things can change next year. I went ahead and changed our insurance today so that we have more options next year. It's going to be much more expensive, unfortunately, but I didn't really see any other option. I don't want to have to tell my kid some years down the road that there was help available to him but we were too cheap to get it. :( I feel kind of like we're getting it from both ends though: we lose an income so that I can stay home to homeschool (because it was obvious even w/o the official diagnosis from 3 years old that normal schooling would not be what was best for him) and now we have to pay more in insurance too. My husband's job is not considered skilled labor and doesn't pay the big bucks! The things we do for our kids, right?

[kbutton]

I am sorry your options are so limited! I hope you hear of something promising that will help out.

[PeterPan]

So your insurance will pay for your psych OR ABA but not both?  You could have your insurance pay for the ABA and pay for the psych yourself.  I go back to the thought that you might not need the psych if you get into a good working relationship with an ABA team.  Certainly does sound like you're having trouble finding what you want.  Do you have any autism charter schools?  Autism support groups in the community?  Other homeschoolers dealing ith autims? Those would all be places to look.

[4KookieKids]

Maybe I'm just misunderstanding folks, but they seem to be telling me that the ABA includes working with the child as well as the adult, and that the insurance won't pay for individual therapy for the child from two different places at once: so they won't pay for ABA through one place while we continue to see our established counselor through another. They keep saying it comes down to billing codes and that he can't get individual therapy from two places at once. And that sounds ridiculous to me because I feel like the types of therapy are obviously different! Does that sound like a load? I've had two different ABA clinics in my state and two different insurance companies tell me that if I went with them/ABA, then I could not continue seeing our normal psych. And maybe it wouldn't be necessary, bc we'd have so much other support? But I don't really like feeling like I'm put in a position to have to choose just one.

 

 

I may just try both anyway and see if insurance notices or makes a stink of it... Either way, I suppose I have to wait because our current insurance only covers the virtual place where there's a wait list, and our new insurance won't kick in until January to give me more options locally.

 

 

I hate waiting. lol.

[PeterPan]

So your insurance will pay for your psych OR ABA but not both?  You could have your insurance pay for the ABA and pay for the psych yourself.  I go back to the thought that you might not need the psych if you get into a good working relationship with an ABA team.  Certainly does sound like you're having trouble finding what you want.  Do you have any autism charter schools?  Autism support groups in the community?  Other homeschoolers dealing ith autims? Those would all be places to look.

[4KookieKids]

Well, things just got a little easier deciding whether or not to pursue ABA or continue to see our current psych. I think that, previously, I was concerned about somehow offending the psych by going the ABA route (even though she said she didn't recommend it for a 7 yo). But I just found out that my son's insurance (he has a primary through my husband's work and secondary medicaid through the state) is changing in January and our psych is only covered by one of the three plan options and our PCP is also only covered by one of the three plan options - but a different one. So I'm kind of relieved that I don't even have to try to explain to her why I'm going a different route and I can just explain that, as much as we appreciate her, keeping our PCP was our priority, and that's why we're going a different route with my son instead of staying with her.

 

 

Don't get me wrong - I really like her and would've liked to continue seeing her. I don't really relish starting over with someone new. But it had also reached a point where my "liking" her was interfering with decisions I was having to make regarding what is best for my son (when her advice to not pursue ABA didn't seem to be in his best interest, actually), and I really didn't like being in that position.

[PeterPan]

That's a really hard decision to make, but I'm glad it's working out for you!   :)

 

PS.  Will ABA be covered with your new insurance?

Edited November 22, 2016 by OhElizabeth

[4KookieKids]

That's a really hard decision to make, but I'm glad it's working out for you! :)

 

PS. Will ABA be covered with your new insurance?

In theory, it will be covered by both our primary and secondary insurance. Unfortunately, it is a new benefit for both of them starting 1/1/17, so details are lacking. Furthermore, we have very few ABA providers in the state because it has not been covered by most places in our state until this year, which means that it's very hard to actually get in some place. Our secondary ins still has the issue of only allowing "licensed providers" (not "certified" ones, as ABA providers usually are), but the primary ins doesn't have that problem. I've called both recently trying to get some new information, but they've said that late December would be a better time to call for new plans. It floors me a bit that they wouldn't have these details worked out already, but oh well!

[kbutton]

In theory, it will be covered by both our primary and secondary insurance. Unfortunately, it is a new benefit for both of them starting 1/1/17, so details are lacking. Furthermore, we have very few ABA providers in the state because it has not been covered by most places in our state until this year, which means that it's very hard to actually get in some place. Our secondary ins still has the issue of only allowing "licensed providers" (not "certified" ones, as ABA providers usually are), but the primary ins doesn't have that problem. I've called both recently trying to get some new information, but they've said that late December would be a better time to call for new plans. It floors me a bit that they wouldn't have these details worked out already, but oh well!

 

It's a lot of red tape on the provider end sometimes, but I am hopeful you will have options sooner than later!