Just started ABA therapy and very concerned (autism, schools, treatment) - - City-Data Forum

otis987 · 10-19-2011, 10:41 PM

Hello,
I am new to this thread, so bear with me if this is a little long. My five year old son has recently been diagnosed as PDD/NOS after several years of "fighting" to get him a diagnosis. He is very verbal, but he has serious sensory issues and often goes into "trances" where he sings the same songs over and over. Long story short, he started therapy at a local clinic in our town two weeks ago. Not really understanding the specifics, only that it is "the only treatment" for ASD, we dove right in. Little clues along the way have made us nervous such as the clinic's reluctancy of letting parents enter the facility to drop of our son or pick him up - we must wait in the car for his therapist to come out and get him, not disclosing full details about the specifics regarding the therapy, not answering questions about the facility, etc.

Anyway, I haven't seen much change in our son as of yet, but I am concerned as some of the techniques I am learning about. First of all, they consistently tell us to ignore his side of the story and not to entertain it at all. The first day, he was restrained and put on "extinction" due to a melt-down he had over his shoes. Today, he had a sub and had a 40 minute meltdown again about his shoes. He was put on "extinction" and restrained again. I have NEVER had to restrain my son for any reason, so this seems very barbaric and disturbing to me. Today, he had visible marks on his arms and neck, with broken skin from the therapists nails on his arm.

I guess I want to know your experiences with this type of therapy. I am starting to feel like we made a big mistake with this. He tells us that he begs them to talk to him when he is on "extinction" and but they continue to ignore him until he calms down, then they continue it for another 5 minutes.

Any advice or experience is much appreciated!

~Pajama mama~ · 10-20-2011, 05:22 AM

Oh my..that doesn't seem ok to me AT ALL!! Go with your gut..you know it's not either. I personally wouldn't let him step foot back in that place. Sounds like they are doing more harm than good. Forgive me for my ignorance..what has he been diagnosed with? I don't know the abbreviations.

I have been in your shoes..having a young child knowing something is wrong with them..and trying to find out exactly what. Then trying to find out how to help them. It is emotionally devastating. I would get online and on the phone. I called local therapist and found a autism support group that meet locally once a month. You need that support from other parents who are experiencing the same thing as well as finding out tips of good programs and coucilors/therapists.

nana053 · 10-20-2011, 08:03 AM

Quote:

Originally Posted by otis987

Hello,
I am new to this thread, so bear with me if this is a little long. My five year old son has recently been diagnosed as PDD/NOS after several years of "fighting" to get him a diagnosis. He is very verbal, but he has serious sensory issues and often goes into "trances" where he sings the same songs over and over. Long story short, he started therapy at a local clinic in our town two weeks ago. Not really understanding the specifics, only that it is "the only treatment" for ASD, we dove right in. Little clues along the way have made us nervous such as the clinic's reluctancy of letting parents enter the facility to drop of our son or pick him up - we must wait in the car for his therapist to come out and get him, not disclosing full details about the specifics regarding the therapy, not answering questions about the facility, etc.

Anyway, I haven't seen much change in our son as of yet, but I am concerned as some of the techniques I am learning about. First of all, they consistently tell us to ignore his side of the story and not to entertain it at all. The first day, he was restrained and put on "extinction" due to a melt-down he had over his shoes. Today, he had a sub and had a 40 minute meltdown again about his shoes. He was put on "extinction" and restrained again. I have NEVER had to restrain my son for any reason, so this seems very barbaric and disturbing to me. Today, he had visible marks on his arms and neck, with broken skin from the therapists nails on his arm.

I guess I want to know your experiences with this type of therapy. I am starting to feel like we made a big mistake with this. He tells us that he begs them to talk to him when he is on "extinction" and but they continue to ignore him until he calms down, then they continue it for another 5 minutes.

Any advice or experience is much appreciated!

This sounds like very bad ABA. I would pull him out of this facility. They should not be using aversives or restraint.

ABA can be very bad or very good. Look for another set of therapists and look into some other therapies like RDI or Floortime in your area. ABA is not the ONLY therapy for autism in any form. I never had a therapist who would not allow me to come and see what was happening. For much of the time, my grandson had ABA in our home (he was younger than your so, so early intervention worked with him at that point). In clinics, we could always observe, though sometimes from a mirrored room because having a parent or grandparent there might have disturbed the routines. I would be suspicious of any clinic that did not allow parent visits.

If you intend to look for ABA, look for a clinic based in Verbal Behavior or Natural Environment Training rather than strictly discreet trials. Discreet trials have their place, but they should not be the majority of the work. Look for someone trained more recently at a reputable school. Someone trained at the CARD center would probably be helpful. You can work online with CARD as well.

Extinction is a very important technique and is used to stop meltdowns, btw. It isn't necessarily a bad thing depending upon what behaviors you want to stop. For example, for a child who is hitting, extinction may be helpful. Tantrums though may warrant differing techniques depending upon the reason for the tantrum. Often extinction is helpful, but not always.

The Center for Autism and Related Disorders: Globalizing Autism Recovery and Awareness

CARD Locations Worldwide: Find ABA Therapy Services Near You

CARD Autism Therapy Programs: CARD I, for 0-8 year olds (http://www.centerforautism.com/card1.php - broken link)

jasper12 · 10-20-2011, 08:09 AM

This is not a place for your son. I taught Special Education for over 20 years, and had an open classroom. Children were never restrained in my classroom. And parents were welcome any time, along with Grandparents, siblings...I never had anything to hide...

Go to your school district, and talk with a specialist...

TabulaRasa · 10-20-2011, 08:28 AM

First off, ABA's something where you need to be crystal clear on what the procedures involve, in order for you to know if the providers are doing it correctly. It's a very intensive therapy that does have a track record of helping to change severe and problematic behavior. Applied Behavior Analysis isn't the ONLY treatment for autism spectrum disorders, and whoever's telling you that is being disingenuous. But it is one that has documentation to back up that it produces results very effectively when applied correctly and consistently.

That said, I would be very wary of an agency that is not being 200% transparent with you. ABA is most effective if it is consistently applied, and if people providing your child with therapy are not walking you through everything that is being done, something is very, very, very wrong. THIS DOES NOT SOUND LIKE AN APPROPRIATE IMPLEMENTATION OF ABA. I would cease therapy immediately and figure out what's going on.

The practice of extinguishing unwanted behavior (i.e. not attending to it, which is the "extinction" you're talking about...that is, for instance, not responding to a tantrum that is being thrown for the purpose of attentionseeking, once you have determined through data that that is, in fact, the function of that particular behavior) is a standard part of ABA and operant conditioning/behavioral psych in general. But you wouldn't put a particular behavior on an extinction path until you had assessed and determined the reason the behavior is occurring in the first place (for instance, a child may throw a tantrum to seek attention, to get out of a task he or she doesn't want to do, because his or her stomach hurts, because breakfast was earlier than normal and he or she is hungry, etc., or any combination of reasons). If the center isn't discussing with you how all of this works, I'd start looking into why. Can't speak to restraining methods, etc., except to say that everything regarding their methods ABSOLUTELY should be things that were discussed with you before beginning any therapy. Everything that's going on with your child in therapy should be absolutely known to you. If that's not happening, you need to change that, ASAP.

No reputable ABA provider should be progressing with any therapy without you being intensely involved, and you should be being explained ALL of this. If you're not, you're dealing with a sketchy therapy provider. The red flags in your post, to me, are about the provider, not the therapy itself, without more information.

Regarding the fact that your child has been doing ABA for two weeks and you're concerned that you've seen no improvement, that's another indicator to me that your therapy provider is sketchy. You should have been clearly explained that ABA is vehemently NOT a quick fix, and it sounds as if they didn't discuss this reality (or much of anything else) with you at all. There's no way you'll see evidence of marked improvement, except over time and with consistent application of therapy principles (which isn't happening, since they haven't even explained to you the science behind the therapy that they may or may not be appropriately applying). Changing behavior takes SERIOUS time. Not two weeks. ABA is in absolutely no way a quick fix to anything, it's part of an ongoing process of therapy. It's also likely and most common that when therapy begins, you'll see HUGE spikes in the behavior (because it's not getting the same result it always did in the past, so the natural behavioral instinct is to amp it up to see if THAT will get the desired result), before drastically dropping. That's, of course, if therapy is being provided correctly and appropriately, and you have no way of knowing if that's the case, because the provider is being alarmingly close-mouthed.

First order of business would be to cease therapy until the center can meet with you and go over every single thing they will be doing with a fine-tooth comb...you should know what's going on with your kid's therapy and behavioral interventions inside and out, and they should be working with you to help apply expectations consistently across all environments, or no therapy in the world will work. While you're doing that, you need to seriously do your homework on ABA, so you know if they even know what they're doing. ABA therapists require board certification, so I would also check to make sure that the providers are even appropriately credentialed and legit.

TabulaRasa · 10-20-2011, 08:36 AM

Also, does your child exhibit severe inappropriate behavior that endangers him or others? That is the most frequent reason for even going the ABA route...to address seriously maladaptive behavior. ABA is VERY, VERY intense, and yes, a LOT of behavior gets completely ignored so as to not inadvertently reinforce it by attending to it. But ABA isn't appropriate for all kids, particularly if their behavioral issues aren't all that problematic. I'm wondering if there is a reason you went this route instead of a less intensive therapy, if your child's behavior isn't incredibly severe. It sounds like you were told that it's the ONLY route to go for any variety ASD or PDD, and that's not true. Could be a money grab.

otis987 · 10-20-2011, 06:21 PM

Wow! Thanks for all of your responses, everyone. I really thought I did my homework; I asked everyone I knew, his doctors, and even found videos of the therapy online with this particular clinic. I feel duped.

One issue is money. No one will accept my insurance, only Medicaid or cash. As such, my insurance informed me the only therapy they would cover is ABA (no speech, no OT). In addition, there is a serious lack of services in our city. There are only two ABA providers and the other isn't accepting clients. There isn't a single child psychologist, so we had to drive two hours away to even see one and get a diagnosis. To see the only developmental ped., we had to wait on a waiting list for almost a year (time that we lost), and then we got a speech disturbance dx. It wasn't until he progressed so much and I made a video of him and sent it to that Dr. and his pediatrician (who claimed he was just "quirky,") that they finally listened. Two months later, we got the PDD dx.

When he was two, he was getting services with the state, but when he turned three, they let him go and pointed us to the school system. When we went in for an eval., they ladies told me "honey, you just need to relax! He's fine! All children display that type of behavior from time to time." I walked away feeling like a fool and that maybe I was imagining it.

At four, we returned to the school district, with the same group of women, telling me the same thing and sending me on my way. When he turned five, we were almost completely unable to leave the house with him. His fourth preschool in two years was begging us to seek help for him. I called the school district again and demanded another eval and full autism screening. When I walked in and saw those women again, I insisted they come observe him at his preschool. I got a phone call the same day that he was observed telling wanted to pursue the full screening for him. FINALLY!!

Just not sure what to do now. He also has mixed receptive expressive language disorder, developmental coordination disorder and
ADHD. Don't get me wrong, he is very verbal (I teach French and Spanish, and he can speak both pretty well), but there is just nothing here. PT and ST (the few that are here) have long waits, and he doesn't qualify for either with the schools. HIs clinic made me panic by saying that he has gotten a late start and needs intensive ABA therapy NOW! They said he has the next 14 years to go to school, but he will only respond to this therapy now. And no, we never got a clue of what would be happening during his therapy. Even with that, I am nervous about pulling him out and giving him no therapy at all.

Sorry for the novel, everyone. I really appreciate the feeback you all gave. We are seriously considering moving at this point. Not sure where to go, but I know he needs help.

TabulaRasa · 10-20-2011, 07:39 PM

If you want to stick with ABA, you really need to find another provider, unless you lay down the law with the place you're currently working with that you be able to be involved, and that you want complete disclosure of their methodology.

CarrieM · 10-20-2011, 08:06 PM

Something to keep in mind... The therapists, the doctors, all of them... they work for YOU. You 'hired' them, you are paying them. That puts YOU in charge. If they aren't willing to cooperate with you, then you take your business (child) elsewhere.

My son is also diagnosed PDD-NOS, as well as ADHD. He is non-verbal, with intellectual impairment and global developmental delays. He spent several years at a school that espoused ABA. Never was he physically restrained, never did I hear of any of his classmates needing to be restrained to the point of being injured!

Talk to service agencies near you. Contact the local ARC. Call your state's disability advocates. There has to be a way to get better services for your son.

Don't ever take no for an answer. Yes, the educators and therapists and doctors and specialists are all trained in their fields. Some may even be considered 'experts' in their area of expertise. But you are the only expert when it comes to your son.

nana053 · 10-20-2011, 08:17 PM

Quote:

Originally Posted by otis987

Wow! Thanks for all of your responses, everyone. I really thought I did my homework; I asked everyone I knew, his doctors, and even found videos of the therapy online with this particular clinic. I feel duped.

One issue is money. No one will accept my insurance, only Medicaid or cash. As such, my insurance informed me the only therapy they would cover is ABA (no speech, no OT). In addition, there is a serious lack of services in our city. There are only two ABA providers and the other isn't accepting clients. There isn't a single child psychologist, so we had to drive two hours away to even see one and get a diagnosis. To see the only developmental ped., we had to wait on a waiting list for almost a year (time that we lost), and then we got a speech disturbance dx. It wasn't until he progressed so much and I made a video of him and sent it to that Dr. and his pediatrician (who claimed he was just "quirky,") that they finally listened. Two months later, we got the PDD dx.

When he was two, he was getting services with the state, but when he turned three, they let him go and pointed us to the school system. When we went in for an eval., they ladies told me "honey, you just need to relax! He's fine! All children display that type of behavior from time to time." I walked away feeling like a fool and that maybe I was imagining it.

At four, we returned to the school district, with the same group of women, telling me the same thing and sending me on my way. When he turned five, we were almost completely unable to leave the house with him. His fourth preschool in two years was begging us to seek help for him. I called the school district again and demanded another eval and full autism screening. When I walked in and saw those women again, I insisted they come observe him at his preschool. I got a phone call the same day that he was observed telling wanted to pursue the full screening for him. FINALLY!!

Just not sure what to do now. He also has mixed receptive expressive language disorder, developmental coordination disorder and
ADHD. Don't get me wrong, he is very verbal (I teach French and Spanish, and he can speak both pretty well), but there is just nothing here. PT and ST (the few that are here) have long waits, and he doesn't qualify for either with the schools. His clinic made me panic by saying that he has gotten a late start and needs intensive ABA therapy NOW! They said he has the next 14 years to go to school, but he will only respond to this therapy now. And no, we never got a clue of what would be happening during his therapy. Even with that, I am nervous about pulling him out and giving him no therapy at all.

Sorry for the novel, everyone. I really appreciate the feeback you all gave. We are seriously considering moving at this point. Not sure where to go, but I know he needs help.

Wow, it sounds like those schools did a very poor job of screening him.

Your clinic is wrong too.

1. While early intervention is better, children can and do respond to ABA and other therapies later as well.

2. The ABA services in your area seem limited and not helpful.

3. If he has any sensory issues (and it seems like he probably does), a good OT may be more helpful than anything else. Given your location though, you may not be able to find someone good who can take him.

4. I don't know what insurance you have, but you may want to fight with them on covering OT and ST. If you find someone good who will take him, they may know how to code it so that the services are covered. They should not code for autism if your insurance does not cover this. There are other ways to code.

5. Can you get on medicaid? It may take some time, but apply for SSI and then if it is denied, you may still get medicaid coverage.

6. If your area is that poor and you can move, you may want to do so.

7. If you can pay something, look into RDI. RDI consulting can be done long distance. It's not cheap, but it trains you to work with your child. If there is no one in your area, you may have to travel for the evaluation and some training. Then after you get started you can work with submitting videos of your work and getting feedback. There are some books you can read on this as well.

Find a Consultant - RDIconnect

You can also try starting up RDI on your own.

This Mom: PPP Day 7 - Getting Started with RDI

What is RDI?: Tips for Relationship Development Intervention

Good luck! DM me if you want a bit more help on RDI. There are two yahoo groups that you can join to ask questions.