Talk to me about autism

[Kathryn]

Unfortunately, I'd say your worries about ABA are warranted. I'm in SC also and we did ABA with the Medicaid waiver. It was a nightmare. The only reason I'm glad we did it is so I don't wonder "what if" we hadn't. As you stated, you take what providers they offer that fit into your schedule. You must do at least 20 hours because "it's not effective below 20 hours" so the state won't pay for less than that. But, that doesn't mean that you get the same person all that time. They cobble together different people's hours to make up all your time. The line therapists are the ones that do the daily work. They have to have a bachelors degree (in anything) and a day or so of training. These were people in it for a slightly higher than minimum wage paycheck. Most of the ones we had were ignorant jokes that knew less about ABA than I did and caused more problems for my son than he already had. Our lives revolved around the line therapists' shifts. Then, the "lead therapist" had to see him each week, so we had to arrange with her schedule also. Then, monthly we had to meet with her boss.

I had very high hopes for it, but the reality in our case was a string of people who had no clue what they were doing. They stayed long enough for my son to get attached and then moved on. I'm not saying they're all like this, but that was our experience in SC. I'd ask a lot of questions about training, background, employee retention, scheduling, etc.

[AimeeM]

Unfortunately, I'd say your worries about ABA are warranted. I'm in SC also and we did ABA with the Medicaid waiver. It was a nightmare. The only reason I'm glad we did it is so I don't wonder "what if" we hadn't. As you stated, you take what providers they offer that fit into your schedule. You must do at least 20 hours because "it's not effective below 20 hours" so the state won't pay for less than that. But, that doesn't mean that you get the same person all that time. They cobble together different people's hours to make up all your time. The line therapists are the ones that do the daily work. They have to have a bachelors degree (in anything) and a day or so of training. These were people in it for a slightly higher than minimum wage paycheck. Most of the ones we had were ignorant jokes that knew less about ABA than I did and caused more problems for my son than he already had. Our lives revolved around the line therapists' shifts. Then, the "lead therapist" had to see him each week, so we had to arrange with her schedule also. Then, monthly we had to meet with her boss.

I had very high hopes for it, but the reality in our case was a string of people who had no clue what they were doing. They stayed long enough for my son to get attached and then moved on. I'm not saying they're all like this, but that was our experience in SC. I'd ask a lot of questions about training, background, employee retention, scheduling, etc.

At least for now we've decided to go with (very intensive) OT and ST - through providers that our Early Interventionist (who knows Marco very well) recommends. As luck would have it, the first OT I contacted just hired a new OT for their office who specializes (and has 20 years experience with) autistic children :D

According to our insurance, as long as it's deemed medically necessary they will cover 80% of the OT and ST, so I think that will be our first line.

I'm sorry about your experiences with ABA - it seemed awfully controversial and I have seen local wanted ads for ABAs in the area starting pay at around 8 or 9 dollars an hour... and Marco's psychologist told us that we could essentially have anyone WE know and trusted trained to be Marc's ABA therapist, which leads me to wonder what requirements, if any, there really are for ABA therapists.

[Kathryn]

At least for now we've decided to go with (very intensive) OT and ST - through providers that our Early Interventionist (who knows Marco very well) recommends. As luck would have it, the first OT I contacted just hired a new OT for their office who specializes (and has 20 years experience with) autistic children :D

According to our insurance, as long as it's deemed medically necessary they will cover 80% of the OT and ST, so I think that will be our first line.

I'm sorry about your experiences with ABA - it seemed awfully controversial and I have seen local wanted ads for ABAs in the area starting pay at around 8 or 9 dollars an hour... and Marco's psychologist told us that we could essentially have anyone WE know and trusted trained to be Marc's ABA therapist, which leads me to wonder what requirements, if any, there really are for ABA therapists.

Yes, that is an option (hiring your own therapist).

Do apply for TEFRA Medicaid ASAP to get the ball rolling. It goes based off of his income and assets, not yours. They will pay for the ST and OT (or be secondary and pick up the balance of what your insurance doesn't pay). It can take a few months because they'll have someone evaluate him and ask you questions about him and his needs.

I got a book about doing ABA on your own and it was much more helpful than the 20 year old girls who taught him things like believing in old wives tales and to be jealous of his brother.

[Kathryn]

At least for now we've decided to go with (very intensive) OT and ST - through providers that our Early Interventionist (who knows Marco very well) recommends. As luck would have it, the first OT I contacted just hired a new OT for their office who specializes (and has 20 years experience with) autistic children :D

According to our insurance, as long as it's deemed medically necessary they will cover 80% of the OT and ST, so I think that will be our first line.

I'm sorry about your experiences with ABA - it seemed awfully controversial and I have seen local wanted ads for ABAs in the area starting pay at around 8 or 9 dollars an hour... and Marco's psychologist told us that we could essentially have anyone WE know and trusted trained to be Marc's ABA therapist, which leads me to wonder what requirements, if any, there really are for ABA therapists.

The book I got was called "Educate Toward Recovery: Turning the Tables on Autism." It looks like it is out of print, but if you look it up and it looks like something you'd be interested in, I'd be happy to send you my copy.

[Janeway]

The Marvelous Flying Marco had a private evaluation done with a child psychologist who specializes in autism (actually, that's all she does). The local clinic had an insane waitlist and this woman came highly recommended.

She met with me and Marco three times. The first time she evaluated him in an unstructured "just watch" type of way; the second portion was a three hour long more intensive evaluation that included an IQ test; the third time was today - to give us the results of his evaluation.

He is autistic, on the severe end of the spectrum, and will require a Level 3 Support System for some things; Level 2 for others. 

Also diagnosed is a receptive and expressive language delay.

She isn't sold on his IQ results, or at least doesn't put much stock in them right now, because the results were "scattered" - his strong areas were really, really, really strong; his weak areas were really, really, really weak/delayed.

 

We really liked his psychologist. She is super knowledgable and has been in this field since the 80's.

 

Here's where I'm super hesitant. While admitting that ABA therapy isn't a ton of fun for the kid, she has recommended a minimum of 20-30 hours WEEKLY of aba therapy - but her preferred number would be more like 40 hours weekly. That's asking my kid to essentially put in a full work day. She also admitted that not all therapists were great and that it may take some time to find one that was and that she was confident we would weed out the "not so good" ones quickly... but, really, I'm hesitant to put my baby through (possibly) several "not so good" therapists just to find a good one, so that he can essentially sign his life over to ABA therapy. 

I know I'm exaggerating and he isn't really signing his life away to aba therapy, but it's all still a bit raw.

That is how ASD is when it comes to IQ. The results are scattered. I can pull my child's results, but I seem to recall some areas being immeasurably high and then others, not so much. I would not put much stock in his overall IQ then. Academically, he is way up there. 

[Janeway]

And I do not do ABA. It is highly controversial. Those who do it, many swear by it. But I do not. Not at all. Look at what it is and google to find out what the controversies are. I am not interested in debating the topic here. Find people who are adults with ASD who are posting about how they feel about what they went through. Just because a child has ASD doesn't mean "anything goes" on trying to "treat" them.

[PeterPan]

The book I got was called "Educate Toward Recovery: Turning the Tables on Autism." It looks like it is out of print, but if you look it up and it looks like something you'd be interested in, I'd be happy to send you my copy.

 

It looks like there's an updated version with a new title http://www.amazon.com/gp/product/1447748360/ref=pd_lpo_sbs_dp_ss_1?pf_rd_p=1944687542&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=1847991467&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=1RYEFCH0RTAVY9S91V31

[Guest]

nm

Edited May 2, 2016 by Guest

[PeterPan]

https://sociallyanxiousadvocate.wordpress.com/2015/05/22/why-i-left-aba/

 

Just tossing out this article for your consideration.  It's anti-ABA, but what she does is explain the difference between "ABA" for insurance purposes (broad umbrella) and ABA specifically (discrete trials, natural environment training, etc.).  I think we've had threads on that before and I haven't read the whole article to discuss it.  I just thought that distinction might be helpful.  Then you can dig in and clarify what people are saying.

Edited April 29, 2016 by OhElizabeth

[Guest]

nm

Edited May 2, 2016 by Guest

[PeterPan]

I have a good relationship with our boys.

 

 

This is a really good outcome!  :)

[Guest]

nm

Edited May 2, 2016 by Guest

[Janeway]

Have you seen The Aspergers Experts? They are brilliant!!!! https://www.aspergerexperts.com

[Guest]

nm

Edited May 2, 2016 by Guest

[myfunnybunch]

https://sociallyanxiousadvocate.wordpress.com/2015/05/22/why-i-left-aba/

 

Just tossing out this article for your consideration.  It's anti-ABA, but what she does is explain the difference between "ABA" for insurance purposes (broad umbrella) and ABA specifically (discrete trials, natural environment training, etc.).  I think we've had threads on that before and I haven't read the whole article to discuss it.  I just thought that distinction might be helpful.  Then you can dig in and clarify what people are saying.

 

Yes.

 

ABA as a treatment should be child-respectful and family-appropriate FIRST. It should NOT be a program that sits a kid at a table for endless trials, nor should it be an endless stream of interchangeable faces.

 

A good therapist can be anyone, because what it really takes is someone who is sensitive to children and their cues, and who is detail-oriented enough to understand skill progression. As most of us who homeschool know, isolation of specific skills, modeling, rewarding, teaching to mastery, generalization, review are generally accepted as good practice in teaching. They weren't introduced by ABA. ABA just uses a very structured and particular approach to implement those practices. :)

 

I am not anti- or pro-ABA. I used elements from ABA for my daughter, but for her the most effective element of her programs (imo) was purposeful engagement, focused on teaching building block skills that she wasn't gaining naturally. ABA, done well, does this, as do other popular autism therapies. I think you're heading in the right direction with the OT and SLP, because the key should be about finding professionals who work well with your child and family and are able to effectively plan and teach skill progression, whatever method they use.

[TrixieB]

Have you seen The Aspergers Experts? They are brilliant!!!! https://www.aspergerexperts.com

 

Thank you, this is very helpful!

[Guest]

nm

Edited May 2, 2016 by Guest