Diagnosis in progress...where do I start?

[WoolC]

Hi, I haven't posted on the forums much but I've learned so much just from reading here and I'm at the point where I need to reach out to others. I will try to keep this as concise as possible.

 

Background: We first had concerns with my sons repetive play and self harming behaviors around age 2. We were sent to a neurologist who said it was just temperament and to watch and wait. Our pediatrician sent us to a psychiatrist for a second opinion, he said it was SPD and we did a year of O.T. And saw some improvements. By 4 years old my son did an academic preschool where he survived but did not interact with peers or form relationships over the course of the year. I brought him home for K and we will homeschool for the long haul. He is progressing slowly but surely academically. Socially, he is regressing to the point of refusing to go to Sunday school classes without a parent and his entire body tenses when children approach him to play at the park, etc. He does not speak to anyone outside of our family. I decided to pursue a full evaluation again but have been put on a 5 month wait list at the most recommended center available to us.

 

I took ds to a doctors appointment this week for an ear infection and when describing sensitivity he's been having in his ear the pediatrician responded that it was probably part of his autism. (This was the sick doctor, not our regular ped). I asked him if the autism was on ds file and he said he has been diagnosed PDD-NOS yet this is the first I've heard an official diagnosis?! The sick pediatrician was kind enough to explain everything he had read in the file and referred us to a psychologist who specializes in ASD testing and social skills therapy. My husband and I met with the psychologist yesterday for a diagnostic interview and we will bring in ds for testing next week to get an official diagnosis. We will be pursuing social skills therapy regardless, but the label will open up doors to services that we can't get otherwise.

 

At this point I'm angry that we've wasted all this time when we could have been getting treatment, angry at the pediatrian for her lack of clear communication about where she thought ds was at and just totally overwhelmed about where to go from here. What resources should I be pursuing? Which books, treatments etc. should I be researching? I've checked out everything my library has on autism but not sure where the most beneficial place to start is. The pediatran we saw this week said he would describe ds as aspergers although that diagnosis has been taken away now if that helps determine what resources might be most beneficial.

 

If anyone made it through reading all of that and can recommend anything I greatly appreciate it!

[EKS]

I would ask for a copy of your son's medical record.  You need to find out when and how the diagnosis occurred.  

[WoolC]

I would ask for a copy of your son's medical record. You need to find out when and how the diagnosis occurred.

Yes, I will call and do that today, thank you!

 

I suspect she put this in his file during his 5 year well appointment, she was very negative about our decision to homeschool. She kept pushing me to see what services he would qualify for in our local public school, but she never spelled out what she thought he might qualify for. I told her then that we would rather pursue private services if she thought they were necessary (I have a friend with a son with severe autism who has had to threaten to sue to get accommodations for her son in our local school so I didn't see much point in pursuing that option) but once again she didn't recommend any concrete steps nor did she spell out what she thought his diagnosis was.

The only thing close to him being diagnosed that I can think of was around age 4; she said "if he is autistic he is extremely high functioning."

[kbutton]

Oh my! I would be livid. Is it really a definitive diagnosis in the file or just a suspicion? I ask because if there aren't a lot of supporting tests and whatnot, I wonder if he will be re-classified as ASD with this next round of testing or retain the PDD-NOS label. It's lousy that the pediatrician did not tell you!!! In addition to what the psychologist will do, take copious notes on what you've observed about your son over the years. Use some checklists if that helps you organize your thoughts. Consider taking video footage. Give as much information as you can about how all of this impacts your family, parenting, social stuff, and academics (even though he's doing well academically, he will have some quirks in how he learns, thinks, communicates, etc. during school). You can present what's positive about your son, but this is the time to spill it on every little quirk, miscommunication, or behavioral difficulty.

 

There are a couple of great older threads with resource lists if you search. My PDD-NOS kiddo was not diagnosed until he was 9, so my resources are mostly for older situations. I will try to respond later with some ideas. At the least, you will also want an occupational therapy assessment. Look for sensory, motor irregularities, and bilateral coordination issues--those are all extremely common. He's still in the proper age range for a SIPT exam. If you get a SIPT certified OT, they might be willing to do the short exam and then do the longer SIPT exam if they see a need for it. But a SIPT certified place will likely help you find an OT who is good at sensory integration. Just a general rule on that. Get eyes and ears checked, preferably using a developmental (COVD) optometrist for yearly eye checks--they will notice eye motor issues that often go along with bilateral coordination problems. Don't be afraid to go outside the box if you have excellent referrals or testimonials. We seem to have had better luck bypassing the local children's hospitals and going on individual recommendations for each kind of therapy.

 

Sometimes social stuff falls under speech, and sometimes it falls under behavioral. I can't recommend social intervention enough.

 

It is okay to nip off one piece of this at a time, though it's nice to have all the diagnostics done at once. We have done therapy in parts and pieces, and it's been very effective. If we had pushed to do it all at once, I think it would have been too much (but others have the experience of huge gains from multiple therapies at once). For instance, getting vision therapy for my son's eye teaming issues developed his bilateral coordination enormously (and fixed the eyes), and then OT was even more effective. (We had OT for sensory as well.)

 

:grouphug:  :grouphug:  :grouphug:

[EKS]

An autism evaluation is an extensive process, not something that can be done during a well child appointment.  I think you should definitely keep your appointment for the full evaluation.  But if you think that the autism diagnosis is accurate, you could use it to initiate treatment while you're waiting for it.

[kbutton]

Yes, I will call and do that today, thank you!

 

I suspect she put this in his file during his 5 year well appointment, she was very negative about our decision to homeschool. She kept pushing me to see what services he would qualify for in our local public school, but she never spelled out what she thought he might qualify for. I told her then that we would rather pursue private services if she thought they were necessary (I have a friend with a son with severe autism who has had to threaten to sue to get accommodations for her son in our local school so I didn't see much point in pursuing that option) but once again she didn't recommend any concrete steps nor did she spell out what she thought his diagnosis was.

The only thing close to him being diagnosed that I can think of was around age 4; she said "if he is autistic he is extremely high functioning."

 

I would consider seeing the pediatrician you saw when your son was sick as a regular, but I would definitely tell the practice that you aren't pleased that the first pediatrician was much more definite in her notations that she was in communicating to you or offering help. It sounds like she may have been genuinely trying to help (urging you to work through the school), but she was leaving out big hunks of information! In the future, I would ask every practitioner to write their recommendations and findings down at each visit for your home file. I think docs forget sometimes which patient they've told what to, but they prioritize their documentation because it keeps them from getting sued and helps them remember stuff as well. It's also how they get paid--their notes directly affect the level at which they can bill services. (There are exceptions--some docs are not as good with their notes, but this is why the good ones prioritize notes.)

 

I'm sorry the first ped was anti-homeschooling. A homeschooler with access to resources can be much more powerful than a mom stuck pleading with and suing school districts!!! I feel bad for parents stuck in that situation. 

[WoolC]

An autism evaluation is an extensive process, not something that can be done during a well child appointment. I think you should definitely keep your appointment for the full evaluation. But if you think that the autism diagnosis is accurate, you could use it to initiate treatment while you're waiting for it.

I agree, we will definitely continue to pursue a full evaluation. The new psychologist we saw thinks testing will be long and difficult due to our son's refusal to speak but she agrees from what we've told her so far that we are probably somewhere on the spectrum.

[WoolC]

I would consider seeing the pediatrician you saw when your son was sick as a regular, but I would definitely tell the practice that you aren't pleased that the first pediatrician was much more definite in her notations that she was in communicating to you or offering help. It sounds like she may have been genuinely trying to help (urging you to work through the school), but she was leaving out big hunks of information! In the future, I would ask every practitioner to write their recommendations and findings down at each visit for your home file. I think docs forget sometimes which patient they've told what to, but they prioritize their documentation because it keeps them from getting sued and helps them remember stuff as well. It's also how they get paid--their notes directly affect the level at which they can bill services. (There are exceptions--some docs are not as good with their notes, but this is why the good ones prioritize notes.)

 

I'm sorry the first ped was anti-homeschooling. A homeschooler with access to resources can be much more powerful than a mom stuck pleading with and suing school districts!!! I feel bad for parents stuck in that situation.

I can't seem to multiquote on my iPad but thank you for all of the information! Yes, I will definitely be requesting to see the doctor we saw when ds was sick in the future. I called the pediatricians this morning to clarify what is in his file and obtain copies etc. so waiting to hear back from that. We did have ds screened by a developmental optometrist about 6 months ago and his eye are fine; I didn't want to push daily reading practice if there was an issue there. Will be making notes of all the other therapies you mentioned to bring up with the psychologist.

 

I'm running out for a few hours but will check back in this afternoon. Thank you both very much!

[PeterPan]

Believe it or not, our ps said they accept a ped diagnosis of autism.  So it's good that you're pursuing the psych eval to get a fuller picture, but you have the diagnosis.  You might look into RDI.  

 

Glad you're getting it straightened out now, even though it feels so frustrating.

[Crimson Wife]

PDD-NOS no longer exists as an "official" label and neither does Asperger's. Some of those who would've previously qualified under PDD will qualify for the newly revised category of Autism Spectrum Disorder. Others will get the new Social Communication Disorder label. Others will no longer qualify for any label. There's a LOT of controversy over the DSM-V and its effect on the ability of kids to get services.

 

I'm going to throw in my little spiel about the importance of getting an audiology exam- my little one's symptoms got 100% chalked up to her autism and nobody suspected that she had profound hearing loss in both ears. The hearing aids aren't going to solve all her langauge and social difficulties but they should make things easier.

 

RDI is good and the book has a lot of suggestions for things you can do at home.

 

Applied Behavioral Analysis has been tremendously helpful to my DD and is more likely to be covered by insurance (either your own or via the Medicaid waiver).

[WoolC]

I finally heard back from the pediatrician's office and apparently the reference to PDD-NOS was a code used to refer us to a neurologist when ds was 3 and is obviously not considered a formal diagnosis. I was also told that our regular doctor had made a note of probable ASD. Definitely a communication break down as far as getting the full evaluation and interventions ds needs but at least we are on the right track now.

 

Thank you to all who have replied, I have made a list of each exam and assessment that we'll need to pursue based on your suggestions and put the RDI book in my Amazon cart, it looks promising.

[PeterPan]

You can find certified RDI providers, and the effect of using them might be greater than what you'd accomplish by yourself with a book.  That is what I was suggesting.  I was amazed when I talked it through with a local provider.  I'm not meaning to be touchy, but I was told that with high IQ children you should defer toward RDI and away from ABA.  That's what I was told, take it as you will.  In our area there are certified RDI people on the state provider list, so getting coverage isn't an issue.  

 

Around here what the RDI person does is videotape each parent working with their child for an hour.  Then the therapist analyzes it, finds the developmental issues, and helps establish goals.  At that point the sessions are about goal-setting and problem-solving.  (can get the target behavior with one but not the other, is not getting carryover to other people, etc.)

 

I find the theory behind RDI fascinating.  

[Crimson Wife]

You can find certified RDI providers, and the effect of using them might be greater than what you'd accomplish by yourself with a book.  That is what I was suggesting.  I was amazed when I talked it through with a local provider.  I'm not meaning to be touchy, but I was told that with high IQ children you should defer toward RDI and away from ABA.  That's what I was told, take it as you will.  In our area there are certified RDI people on the state provider list, so getting coverage isn't an issue. 

 

Actually, research has found the strongest improvement with ABA among high-IQ children. It was referenced in that NYT article about the 20% of kids who improve so much with ABA that they no longer meet the clinical definition of autism: http://www.nytimes.com/2014/08/03/magazine/the-kids-who-beat-autism.html?_r=0

[Crimson Wife]

I went and pulled the curriculum plan that my little one's BCBA printed out for me at our recent semi-annual meeting. It shows the progression for very basic to sophisticated skills that a child who started with the agency at a very young age or low functioning level would follow.

 

Here are some of the later skills that will be targeted:

-making inferences

-figures of speech

-sarcasm

-distinguishing between sincere and insincere statements

-negotiation & conflict resolution

-phone skills

-money skills

-employment skills

-household management skills

-team sports

-executive functioning

 

Anyone who makes a blanket statement about ABA not being appropriate for high IQ kids doesn't have an accurate understanding of ABA.

[Tokyomarie]

Crimson Wife- What do you find most helpful about ABA? What do you know about the ABA of today compared to, say, ABA the way it was 15 or 20 years ago? I don't know enough about ABA to have a clear opinion about its current implementation. I know some of the criticisms that were leveraged against ABA 12-15 years ago from a number of directions, but I don't know if they are still valid today. If one would like to consult one resource that truly explains ABA of today, what you suggest?

 

I do know more about RDI. The RDI Book provides a good introduction to the concept of RDI, but isn't a framework for implementation. The earlier Gutstein books are no longer representative of RDI because RDI has undergone significant development since they were written, though they do provide some ideas that can be useful. To really understand how to implement RDI, one needs to work with a consultant. Recently, RDI has opened up parts of their online platform as a monthly subscription for parents and professionals who are considering RDI as a therapy. Anyone who wants to check out RDI further could subscribe, even for a short time to get more information before deciding whether to even contact a consultant. Go to RDIConnect and click on community. I am not affiliated with RDI but I do think it is a framework for intervention that can be very useful.

 

RDI is implemented by parents under the guidance of consultants and is considered to be a developmentally based intervention. Another intervention with these qualities that is mainly for preschoolers is The PLAY Project, developed by Dr. Richard Solomon in Michigan. It has some similarities to DIR/Floortime, developed by Stanley Greenspan. I don't know the details about the PLAY Project, but one of my colleagues offers it in her clinic and really likes it.

 

Just some questions and food for thought for any parents with young children on the autism spectrum.

[kbutton]

I am curious about RDI and ABA for 2e kids who are older. My son is nearly 11, and he's sort of between levels of skills. He was identified as PDD-NOS at almost 9--just before the new DSM, and PDD-NOS still opens doors to services in our state. Our behavioral person is putting pieces of things together (and doing a good job), but I don't have a grasp of RDI at all, and ABA examples seem to be about younger kids or kids with a whole different set of skills than my son. I think there must be some good to be had from both programs; after all, I have learned a great deal from other parents of ASD kiddos, regardless of the differences in our kids and their abilities. I just don't know how to map it to my son's situation.

[Crimson Wife]

ABA has come a long way since Lovaas and is much more naturalistic in its current form. If an observer didn't know it was an ABA session, they'd probably think it was a nanny playing with my DD. If the target is following directions, they might play "Simon Says" or "Red Light, Green Light". Reading books together or doing arts & crafts projects are ways to target language skills. Lots of sociodramatic play to help with social interaction.

 

We have seen a dramatic improvement in language, social skills, and behavior. She can have a back-and-forth conversation where she couldn't a year ago.

 

RDI is something I think is helpful but it is not covered by the autism mandate like ABA is. So it would cost us $$$$ to do RDI, while ABA is now free between our health insurance covering most and Medicaid paying the co-pays.

[Tokyomarie]

Do you have a favorite resource that explains ABA well, Crimson Wife?

[Crimson Wife]

Our BCBA really likes the Verbal Behavior approach. I haven't yet read the Sundberg & Partington book Teaching Language to Children With Autism but have heard it's good.

[Crimson Wife]

I am curious about RDI and ABA for 2e kids who are older. My son is nearly 11, and he's sort of between levels of skills. He was identified as PDD-NOS at almost 9--just before the new DSM, and PDD-NOS still opens doors to services in our state. Our behavioral person is putting pieces of things together (and doing a good job), but I don't have a grasp of RDI at all, and ABA examples seem to be about younger kids or kids with a whole different set of skills than my son.

 

There are some older kids at the center where my DD goes but she doesn't really interact with them much. I know one of them was working on money skills recently with his therapist because my DD kept trying to grab the money while I was talking with DD's therapist.

 

This presentation seems like it has some good info on ABA for older kids & teens: http://www.lcautism.org/wp-content/uploads/2013/08/Autism-Conference-ABA-With-Teens-Adolescents.pdf

 

[WoolC]

I have found a few RDI consultants and ABA specialists in our area so I guess the next step is just figuring out which approach to take with ds. Hopefully the evaluating psycholgist can point us in the right direction. So far she has mentioned the TEACCH program might be beneficial, is anyone familiar with it?

 

Our main goal for now is to have ds be able to attend church classes, gymnastics beginning in the fall, homeschool social activites without meltdowns etc and become more confident in social situations. Currently if a child approaches him to play at the park for instance he ignores them, or tenses his whole body and grimaces without speaking. We are also hoping to eliminate some self harming behavior. Not sure if RDI or ABA would be better for these goals.

[Lecka]

My son does the Verbal Behavior method of ABA.  But his therapists will do anything.  All they have to do is take data and have a therapy goal.  

 

It is really nothing like what I think ABA therapy was like years ago.  It was appalling!  I am appalled even reading some things (one thing in particular) in Let Me Hear Your Voice, and so glad there are better methods now!  Because of the work of people who care about children!  I think in older things I get the impression it is like "these kids are an experiment" sometimes.  Like, it is cold and impersonal.  That is just so far from my own personal experience.  

 

My main thing to say though ----- do not get into this idea that ABA is one thing, over here.  RDI is this other thing, over there.  

 

In the past I think that must have been true.  

 

But multi-disciplinary is the way to go, it is the way a lot of people want to be.  

 

My son's ABA supervisor (case supervisor) is interested in RDI, she has learned about it from parents in the past, etc.  She is not a specialist in it, but she knows about it.  She uses things from it.  She doesn't sit back and go "I wont' do THAT!  It is RDI!  I do ABA!"  

 

In my town also, a lot of speech therapy students get training in ABA (and work with my son!).  They don't go "we are speech therapy students, we don't do horrible, horrible ABA!"  They go -- "I am a speech therapy student, I want to have skills to work with students who have problem behaviors."  That is what they are looking for (from what they say).  

 

But mainly I just think -- it is not so polarized.  It is not something so much where you are like "here is my philosophical view and my impression" and then pick something and think it is the best.  You really probably want to be open to everything that seems good, and open to looking for the right person for the child.  Because I think that matters more than which exact thing.

 

In addition ----- I have seen lists grouping things, and RDI gets listed together with ABA.  I have seen it listed as a sub-set or type of ABA.  (Just as Verbal Behavior is a type or sub-set.)  I do not always see it this way, but I have seen it.  It depends on how people are drawing lines and grouping things.  

 

But I think if you have a goal for your child, a specific goal, you look to meet it.  How will you meet it?  Maybe you will meet it with something that started in RDI.  But I definitely think, that a lot of things that started in RDI, are now part of ABA, because they are things that work, that people see as effective.  And so ABA therapists are like "hey, this works, this is good, let's do it too."  If they are good.  If they are bad maybe they just care about professional turf battles and not about helping children.  

 

And then, maybe people only get certified in one thing.  Most of the time I DON"T think that means they go "pooh, pooh, I spit on the other fields of study that I didn't do."  I think they want to look for the best that is available.  But they will adapt it or something to fit their specialty.  But they are not going to go "well, the person who came up with that idea was working in ABA, so forget about that."  

 

And I think some of these discussions can assume that people are doing that.  

 

It is just not my personal experience at all.  My personal experience is with people wanting to help children.  

 

For ABA they will say they need to see that a measurable, observable skill is being acquired.  But please don't think this means social skills, abstract thinking cannot be observed.  Please don't think this means "oh, that means just naming the letters in the alphabet."  It is just not the case.  

 

Locally my honest opinion is -- that in a lot of ways, ABA will co-opt things.  I am in a small town, so there is not an opportunity to get so "well, I will go over here for this, and over there for that."  It is more like -- they see something is working, they can incorporate it.  But I don't think it is only ABA that is co-opting things.  OTs and SLPs co-opt things, too.  There is a lot of co-opting going on.  There is a lot of desire to help children, and recognition that children cannot be divided up into little pieces, that is not how children are and may not be the most effective way to treat them -- as if they are just puzzle pieces and not a whole child.

 

But then -- the way that I experience ABA locally may not be the same as it exists in other places.  Because I do live in a small town, and we are kind-of isolated, and kind-of behind-the-times.  But there are people here who go to conferences and I think try very hard to be doing things in the best way as it is currently understood to be.  

 

I have also happened to see that I looked at a conference listing for an ABA conference.  They had a session on incorporating "rapid prompting."  That is the one from India, the mother who taught her son by rapid prompting.  (RPT I think.)  What law says that it can't be incorporated into ABA for a client who may benefit and then shows benefit?  Now, that was not the way it was in the past.  But I think now there are a lot of people who are not going "hey, I am a psychology person, I like psychology and want to study some people."  I think there are people who want to help children, and they are drawn to children.  This is what I see with the people who work with my son.  They have some reason to want to work with kids who are quirky in some way, and it is something they like and enjoy, and seem to find fulfilling, etc.  They are not going "hey, I am a psychology guy, here to observe you, let's see how my experiments go."  And that is what seems to me to separate the older ABA stuff from the newer stuff.  

 

Also older things do not include FBA functional behavior analysis/assessment and so I think that is garbage -- it is such an important thing.  Also, they do not include MO/EO which I do not really understand -- but basically means "if a child is not thirsty, good luck getting him to drink water."  Like -- don't just be totally random and not aware of what is going on with the child, to some extent.  It is more like "the child is hot and it is summer, see if the child wants to go swimming."  That is have a good motivating operant or something.  This seems basic and obvious to me, but apparently did not exist until like 15 years ago?

[Crimson Wife]

 So far she has mentioned the TEACCH program might be beneficial, is anyone familiar with it?

 

TEACCH is classroom-based, which is why it is often used in schools. ABA and RDI are typically 1:1 therapies.

 

[PeterPan]

Lecka, that's cool that they're bringing in rapid prompting methodologies into other therapies!!  That book was one of the most intriguing I've ever read on education.  (I guess that's not saying much about me, lol.)  I just spent a lot of time high-5ing it  

 

Marie makes a good point, that some of the comments I'm getting *may* be from people with more old school impressions of ABA.  Or it *could* be that in our area maybe ABA still is more old school, kwim?  Don't know.  I think what they were concerned about was rigidity of the child's implementation and not generalizing, that you might go for an end skill without building the developmental steps to improve their ability to generalize and apply to new situations.  So, for instance, you can teach my ds about lines in one setting, but throw a twist on him and he messes up, violating social rules and causing problems.  He didn't actually GET it or get all the precursor steps and thought processes that would let you know how to handle the new scenario.  

 

What I *liked* about what the consultant was telling me about RDI is that, as Marie said, it's very focused on helping *parents* implement and focused on the developmental steps that should have been occurring.  In that sense, something like how you line up is a way later step and other steps were earlier in the developmental process, much earlier.  I don't really understand it beyond that.  I just think it's fascinating enough to be worth looking into whether it's available in your area. 

[Crimson Wife]

Generalization is a big goal of my DD's ABA team. One of the reasons they schedule multiple therapists to work with a child is to help with generalization. We also do a mix of home, center, and community outings sessions so that she doesn't fall into the trap of associating a certain task with being at the center.

[kbutton]

There are some older kids at the center where my DD goes but she doesn't really interact with them much. I know one of them was working on money skills recently with his therapist because my DD kept trying to grab the money while I was talking with DD's therapist.

 

This presentation seems like it has some good info on ABA for older kids & teens: http://www.lcautism.org/wp-content/uploads/2013/08/Autism-Conference-ABA-With-Teens-Adolescents.pdf

 

 

That was helpful. Our behavioral tutor has done a lot of data collection in working with my son. It looks a lot different than what I hear everyone talking about with younger kids, and it's definitely more along the lines of the flexible approach talked about in the presentation. I think she uses whatever works, whether it's ABA or not. I know she's had to tailor everything she's used, and one book she used was just to get a baseline for where he is across a variety of skills and settings. It sounds like that is the nature of things with the older kids.

[Crimson Wife]

There are a lot more young kids with autism since the incidence is rising. Also, I guess it's fairly common to stop ABA once kids start school. My DD was friends with a little boy at her center who stopped going recently because he entered preschool. I don't know the details of his funding- maybe his parents have a plan with a high deductible and/or co-pays and he didn't qualify for the Medicaid waiver. But for whatever reason, they decided to stop ABA and just have him go to preschool.

 

Right now we're getting 20 hrs/week because DD's kindergarten is half-day. Next fall when she starts full-day 1st, the agency said that our insurance is probably going to cut it back to 15 hrs/week. I'll probably drop one of the days in order to free up room for speech therapy and possibly also Fast ForWord through Scottish Rite Center (assuming that they accept her as a client, which the director seemed more inclined to do after the discovery of the hearing impairment).

[Tokyomarie]

My main thing to say though ----- do not get into this idea that ABA is one thing, over here.  RDI is this other thing, over there.  

 

In the past I think that must have been true.  

 

But multi-disciplinary is the way to go, it is the way a lot of people want to be.  

 

 

Back in the early 2000s, when RDI was really just getting established, there was a huge difference between RDI and ABA. ABA was still very focused on static, discrete skills- which ARE important. However, children with autism are missing a key piece of dynamic intelligence- things like being able to make decisions in the moment about what skills to use, having intrinsic motivation to act, having relationship between two people as a primary motivator for action, and all of the skills and abilities that are now talked about in the context of executive function. Way back when, ABA wasn't incorporating all of those later components of function. Interaction between the therapist and child felt to onlookers as cold and rigid. In fact, it was often recommended when a family was choosing to do RDI that they discontinue ABA services because the two were such opposite approaches. This is why I want to get a more updated view of ABA. 

[Tokyomarie]

Our BCBA really likes the Verbal Behavior approach. I haven't yet read the Sundberg & Partington book Teaching Language to Children With Autism but have heard it's good.

 

Thanks for sharing this title and more information in your other posts. I'll look up this book and also look through the presentation you mentioned in another post.

[Crimson Wife]

There is a variant of ABA called Naturalistic Environment Teaching (NET) that arose in response to the criticisms of Direct Trial Training. DTT is the sitting at a table with flashcards thing. Our ABA therapists do some amount of DTT because certain concepts don't really lend themselves to naturalistic teaching since they don't come up that often. I see it mostly with teaching vocabulary. They're running a program called "social identification", which is basically teaching DD the names of community helpers. She should know what a "dentist" is, for example, but she only sees our dentist twice per year. So it's a quick thing to teach via flashcards and DTT.

 

If you're interested, here's a research paper contrasting the two: http://opensiuc.lib.siu.edu/cgi/viewcontent.cgi?article=1239&context=gs_rp

[Lecka]

I LOVE the book "The Verbal Behavior Approach" by Mary Barbera.  I highly recommend it.  A lot of it is not applicable to my son anymore so much, though.  My son is beginning intraverbals (responding to the spoken language of others, with no picture support).  He still has a language delay.  On one hand, it is not so bad.  On the other hand, it is still delayed.  

 

Parent training is supposed to be a key part of ABA.  I read old-fashioned things about ABA where parents are told "get out of the room."  Um, it is not my experience.  This is where the VB-MAPP and ABLLS (and again -- my son is more delayed) come in -- they use these to really target his developmental level and communicate that with me.  

 

NET is totally a part of Verbal Behavior/ABA.  It is much more than just DTT.  Agree!  

 

Tokyomarie -- like OhElizabeth said -- maybe they are different here, because it is a small community and there is not a large group of autism specialists, and they are all kind-of into everything, to some extent.  I live in a college town with 50,000 people, and there is no state insurance mandate, so even though the other state university in our state, with a good autism program, almost all the graduates of that program go to work in other states that do have an insurance mandate.  I have military insurance.  I really think we may have a different situation than how it is in some other places.  Here there are waiting lists and very few children are identified before they are 3 or 4.  My son should have been identified when I took him to Early Identification screening (when he was 18 months old!) and he had speech services through EI -- he was not identified though until he was almost 4 (diagnosed 2 weeks before his 4th birthday).  It is really different from what I hear about is going on in other locations.  

 

The other thing is that all the people I know doing ABA here are younger than me!  I am 37.  The BCBA-D who is old and has 20 years of experience, is located in a city 2 hours away, and she comes down here 2 Saturdays a month.  She seems like she is willing to do anything to help kids, when I have met her.  She is totally dedicated.  But there are NO people in my town, that I know of, none at all, who ever did ABA therapy before VB/ABA.  Everybody here does stuff including Verbal Behavior (or would with my son who had a severe language/communication delay ------ of course if somebody is not at that level they are not going to have them do it).  But there is just not a population of people my age or older, stuck in their ways, still doing things like they did it starting out.  My son's case managers have both been people who would have been in middle school or high school in the 2000s ---- it is just very old news to them, they don't get into it.  

 

I feel like for us, with only knowing people who have had more recent training, who have been certified under the new testing guidelines for BCBAs and BCaBAs (they tightened up requirements after some low-quality people were getting the certification is my understanding -- though hard to know), the old things I read are comparable to watching a documentary about Atari games and Pong and old Nintendos.  My husband loves all these old game systems.  He loves the Sega Dreamcast and all these things.  

 

But video games from the 2000s are just not in the same ballpark as they are now.  In the 2000s, iirc, that is when the X-Box came out, and maybe Playstation.  Now we have an X-Box hooked up, b/c my husband bought a lot of games for it, and after we started a family we never spent money on another X-Box system, my husband did get a Playstation 3 though.

 

But if you try to show someone who is 20 an X-Box and tell them how it was so, so cool back when we were their age, they are just like "oh, yeah, I kind-of remember when that was cool," but it is not something they are that into.  

 

That is how all this ABA vs. everything-else stuff is here ---- most of the people are just too young.  

 

We have one woman in our town in the school district, who has 20 years of experience with autism, more than that as a speech therapist with special needs, and she is open to everything.  

 

There are two OTs I know who are older and I think held onto some anti-ABA thinking for a while.  But both of them have worked with my kids (one or the other of my sons).  One of these  OTs told me that she liked what my little son's therapists were doing with him when they shadowed him for a program she was part of.  She said she wanted to learn more about it because she was seeing things be effective.  Both of these women are, like, women who in my little town are kind-of hippies, wear flowing skirts, wear dangling necklaces, are really into PACE and Bal-a-vis-x type stuff, etc.  They are starting to like ABA only because of meeting people like my son's case manager and thinking they like her and how she does things.  They are not really inclined to like ABA.  But when this woman saw it in action, she liked it.  Or -- she at least wanted to borrow/co-opt a few techniques!  That would work with children like my son!  That is what I think people want -- they want to incorporate things that will help them when they are working with kids -- everyone in my town, imo, has this kind of multidisciplinary interest to some extent.  It is just seeing something work and using it, too, even though it is sensory and they are not an OT, or it is a visual schedule, and they are not an ABA therapist, etc.

 

My son's ABA supervisor has incorporated Bal-a-vis-x into another client's program and said she could for my son if it is appropriate.  (I know I mention it all the time -- Bal-a-vis-x is SO popular here, everyone loves it -- I think it is good, too, lol.)  She has to put it in as a gross motor program, or as a program where the child follows a non-verbal cue, or as a program where the child initiates, or something, anything, that makes it a program that implements a goal the child has.  She has to be able to take data.  That is because the therapy agency can get audited by the insurance company, and they must show that their programs are addressing a goal and that they have taken and tracked data.  

 

But she is really good at taking things people are interested, and incorporating it into a therapy goal.  Sometimes she says it is not the right time -- last summer my son did not have a lot he could do with swimming, he was just not at a good point in his program (and there are some things about him).  He has tutors who are taking other kids to the pool every day, though, because it is written into their therapy goals, they are doing things at the pool that will meet a gross motor goal, a goal for attending, a goal for following directions from a distance, a goal for initiating, etc, etc.  

 

But I also agree, I read older things and I feel like they are missing so much.  

 

When reading about Verbal Behavior ----- a thing about it, some of the people who are very big in it, developed it as a RESPONSE to the problem that many children were not learning to use their language skills in a lot of situations.  They came to believe that *the way the kids were taught was the problem.*  So they *changed how kids were taught.*  In my impression ---- they did not know they needed to teach kids to initiate, they didn't know how to teach initiation.  This is also where you read things about kids who were taught to make unnatural eye contact.  There were problems in the way things were taught.  They wanted to improve their field so kids could do better.  They are the ones who are in with a kid, wanting so badly for a kid to make progress.  (And this is where I feel like all the people I know are in it for the kids, want to work with kids ----- they are not people who want to do experiments in behavioral psychology and happen to end up in autism that way, like it seems a lot of people were in the past.)  

 

I really think it is a field where many, many people are striving to do better, improve things, figure out a new and better way, go to conferences and find out what other people are doing, and things like that.  That is my experience with it.  Those are the Facebook pages I choose to follow, when I choose to follow the Facebook page of a therapist or a teacher.  I know it can't all be like that, but I seem to ignore those parts.  

 

 

[Crimson Wife]

The people at my DD's ABA agency are young as well. The clinic director is probably in her mid-30's, the BCBA is probably about 30, and the entry-level therapists are all in their early-to-mid 20's.

 

I remember hearing about Lovaas in my college psychology classes in the late '90's and thinking what he was doing with the electric shocks and other aversives was awful. I totally understand why adults with autism who experienced this early form of ABA can be highly vocal in their criticism. But what concerns me is when they scare off today's parents from the very much improved form of ABA.

[PeterPan]

http://www.rethinkingschools.org/archive/29_03/29-3_carollo.shtml 

 

This is the article that piqued my interest.

[Crimson Wife]

I found the author on LinkedIn. She is very young as she graduated college in 2013. I think she has a very valid point about the instructional assistants/paraeducators not being given good training. This is a particular problem in PS classrooms if the head teacher is inexperienced as well. My DD has been lucky in that she's had experienced head teachers even when some of the paras are very young and inexperienced.

 

It seems to me that her criticisms are more of PS special ed (surprise, surprise!) than of ABA as a methodology. If she were to come work at my DD's agency, she would get a lot of training and coaching by experienced ABA therapists before being allowed to work independently with a client.

[PeterPan]

Crimson, so you're saying there would be a difference in ABA in a classroom (with say a 1st grader in a charter school, which is what I was talking with professionals about) and ABA in a private therapy session...  

 

The reason that article resonated with me is those are things my ds does.  He hits and retaliates and gets more frustrated if you tell him what he's feeling.  He doesn't seem to respond well to extrinsic motivators, and because of his high IQ I WANT him to be able to work under intrinsic motivation.  Whatever that takes, that makes more sense to me for him.  So I have no statement on other people's kids and how they should be worked with.  I just identified with the struggles in that article.

[Crimson Wife]

A school MIGHT have a BCBA supervising the teachers and paras, but there's no requirement in my state for that. The head teacher in each classroom has to have autism certification as part of her credential but there's no specific training in ABA as part of that certification. A teacher might have voluntarily taken a course on ABA as an elective in the post-bacc or master's program if one were offered at the ed school. However, that would've been left up to his/her discretion.

 

In our district, the autism program is overseen by a guy with a PhD. in Child Psychology, but he isn't a BCBA. He used to be part of the IEP team when he directly provided services to my DD before he got promoted. I really like him and thought highly of the social skills group he ran at DD's preschool. But his training and expertise is on the psychotherapy side rather than ABA.

 

Private ABA funded by health insurance, Medicaid, and/or the Regional Centers requires a BCBA to supervise. My DD gets 20 hrs/week of therapy and 10 hrs/month of supervision by a BCBA. The BCBA might have a degree in special ed or child psychology (or SLP for that matter) but in order to earn board certification, there are specific ABA courses that he/she has to complete.

[PeterPan]

I don't know.  In our state we have autism charter schools with behavior specialists with masters, etc. who are ABA trained (says so in their profiles).  Whether they're BCBA, I can't tell, partly because often that certification will be under a maiden name.  Point is, in our state we get that integrated into a school setting when you attend an autism charter school.  You can get in with your own funds, the autism scholarship, or by getting your school district to agree to send you there.

[Lecka]

I read the linked article, OhE.  Nothing resonates with me.  My son is assigned in a Level 1 resource room, but it is not considered self-contained.  But whatever -- what is described in this article does not resonate with me in anyway.

 

My son is totally encouraged to identify and express his feelings.  He has a goal in the Maurice curriculum (which is on the old-fashioned side, but is used in our school district) to identify his own feelings when he is feeling them.  It is something that is high on their list of things, because it is better to identify and express your feelings instead of not identifying your feelings and possibly having a behavior problem instead.  

 

I also disagree about her thing about "extrinsic vs. intrinsic motivation."  The goal is ALWAYS to move towards intrinsic motivation. It is ALWAYS to think about how to encourage intrinsic motivation.  

 

There are so many times we want to work on a skill, and they sit and ask me for ideas or offer up ideas, for what kinds of activities would be the most intrinsically motivating for him.  Would using a cartoon help?  Would going to the zoo help?  Would playing a certain game help?  What about the park?  What about this?  What about that?  They want to do what is going to be intrinsically meaningful so that it will have *meaning for the child.*  *Meaning for the child* is a big thing.  

 

I think these are things that RDI does very well.  But to say that modern ABA does not have it?

 

She sounds like she is somebody with no ABA training who is being told to run DTT programs, and thinks that DTT is all that ABA can be.  She doesn't sound like she knows a lot about it.

 

Our school district is sometimes iffy on training, but also pretty good, it is just not perfect, I guess.  But pretty good.  

 

But there is a new RBT certification and some paras are starting to get RBT certification.  It is a licensing thing by the same group as gives the BCBA and BCaBA certifications.  

 

But yeah -- I can see being very frustrated if you are given no guidance or training, and just get handed a DTT program and told to run it with some kids.  

 

Doesn't sound like she was given a lot of guidance on how to work with kids to me.  

 

But DTT is important, too, at times.  

 

OhE -- I think you are going to have to talk to individual people.  Ask them these questions.  Ask other parents.  Network.  Because maybe the best choice for your son is RDI.  Maybe the programs at charter schools are actually not appropriate for him.  I really think that kids at my son's level are a lot better-served than kids at a higher level, in my kids' elementary school.  

 

I think you are going to need to see.  

 

I think it is good you are gathering questions.  

 

To me that is a mis-representation of ABA -- but if ABA where this person is consists of DTT trials and nothing else?  Well, I would not be in favor of that.  It does not sound good at all.  

[PeterPan]

Lecka, thanks for that explanation.  That makes a lot of sense.  

[Lecka]

I am going to add -- you are going to just ask how they have things set up at any particular charter school.  

 

My son has a para.... sometimes he is in "the regular classroom" and she is hanging back.  Maybe she points to something as a reminder for him to get on track.  In fact -- I consider this (a point) heavily ABA because in ABA they want to have a "hierarchy of prompts" from least to most, use the lowest-possible prompt, and reduce prompts as possible.  I have read about (and *totally* see with m son) that it is hard to "fade" (slowly reduce/remove) verbal prompts.  It is much easier and better if he can have a visual or physical prompt (or another kind I guess) than a verbal prompt, because it is a lot easier for him to not get in a habit of "waiting to be told."  But at the same time -- my older son had "visual cues" to focus on his work and it is about the same difference in a lot of ways, but is not ABA.  Where the reason is a verbal prompt could be disruptive, distracting, embarrassing, etc.

 

But anyway -- there is a lot of time he has somebody who is just kind-of helping him to do whatever is going on.  

 

Then, he does also have time that is more of therapy time.  This may still be him doing therapy and the para helps him or keeps track of how he does, or whatever.  

 

Then he does have "programs" that may take the form of DTT (discrete trial training) when he is working on things like "what are the letters of the alphabet" or "let's describe this picture and use some words" and "here is a picture -- tell me what you think might happen next" or "here is a picture, what just happened" or "follow this two-step instruction" or "tell me how the girl in the picture feels" or things like that.  Those are all things where the special ed teacher has made a goal and made a program, the para sits with him, does the program, and takes data.  He has a wide variety of programs.  He has had a program to greet 3 friends at recess.  A lot of his goals are language or social.  

 

He had a behavior plan in pre-school and for the beginning of Kindergarten.  It is removed from his IEP now, though, the special education teacher decided he no longer needed it.  

 

So I think you would need to ask -- would your son be in more therapy-type situations and doing therapy-type things?  Or would he be doing activities that were not explicitly therapy-like, and more just having the activities be set up in a way he is likely to do well, and with people who will be good with him?  Or some mix of the two?  What kind of mix?  

 

But to say "what is DTT like" I think a way to think of it is, it is like Barton.  You are kind-of drilling something, one-on-one, seeing if they know, if they don't, you are going "okay, we have got to work on this more" and "okay, we have got to go in our bag of tricks and try other methods to teach/practice this skill."  A lot of people would find their kids to lack intrinsic motivation to want to do Barton at times, and choose to let them earn pennies, or m and ms, or a new Lego toy when they finish a level.  Alternately people might find their kids were very responsive to "social motivation" and be able to be motivated by hearing mom say "good job" and letting them hear you tell dad they worked hard today.  Alternately other kids would be "intrinsically motivated" to work hard because they knew it was the process of learning to read and they wanted to read so bad they could get through intense reading instruction with that as their main motivation.  

 

My older son is one where he started reading with concrete rewards of many kinds, he did not have a lot of intrinsic motivation, he did not have much motivation, he would rather cry or fight with me or keep dropping things on the floor than work for me.  My positive attitude and praise were not enough at first.  Then he got better - -he saw he was making progress -- he saw he was reading better and better.  He was proud when I said he was doing good or bragged on him -- rewards were no longer needed.  Then he became a good reader and was willing to work through harder things because he saw himself as a reader and wanted to be a reader, and wanted to read books he was motivated to read because they were books that seemed good or that other kids were reading.  

 

So I think this idea of motivation as an on/off thing is not so helpful, I think there are cycles of motivation.  Not many kids who struggle in an area can get up with a good attitude and work hard, only for intrinsic motivation.  There has to be a bit of ease, a bit of a feeling like "I can do this" and then they slowly increase their intrinsic motivation and slowly decrease their extrinsic motivation.  I read about this in a book about learning disabilities (reading for my older son, it was not a book about autism I read for my younger son).  

 

I agree that sabotaging a child's intrinsic motivation is a harmful thing to do.  I agree on all of that.

 

But I do not think that is an equivalent statement to saying that extrinsic motivation is never okay.  It can be compared to saying -- should I not get paid anymore?  Money for working at a job is a form of extrinsic motivation.  Performance bonuses is a form of extrinsic motivation.  Getting your name on a board for memorizing Bible verses at church is a form of extrinsic motivation (and maybe that is not good to do ---- but I liked to get my name on the board when I was a child, and the Sunday School would mention names and say we did good).  

 

Second, my son is delayed in understanding "social motivation."  A lot of "acceptable" motivation is "social motivation."  That is picking up on the smile, the head nod, the verbal comment, and other things like that, that my son is *delayed in picking up on.*  So just because he does not understand social rewards, he should be deprived of any form of reward?  It bothers me.  But he does understand social praise now.  He likes it because he understands it now.  Before he understood some of these things, how was it supposed to mean something to him?  

 

In ABA they have a goal of moving him toward social motivation (or social rewards, I may be getting that wrong) and intrinsic motivation.  It is seen as something that may need to be a process.  Let's say my son is going to the dentist.  Will he do very well, right now at age 6, because he understands that teeth cleanings are important for his health and so he won't have bad breath or ugly teeth?  No, he doesn't understand that.  He understands that it is important to me, that people are nice to him, they have a refrigerator with little bottles of water, and he gets to pick a toy from the treasure chest after he is done.  He does good at the dentist now, and those are the reasons -- it is not "intrinsic motivation," it is social motivation -- he wants to do what he is supposed to do to do a good job, the same as my daughter.  Now, 2 years ago, he was getting to play games on an iPad for every couple of minutes.  He had someone sitting by him touching stars on a screen to show him he was earning stars.  He was struggling to hold it together, but he worked hard because he wanted to play Temple Run or something for a minute or two.  At that same time -- it is not like everything he did all day was like that.  But the dentist was like that.  And, a lot of DTT was like that, too, because it was things that were very hard for him and he was working very hard, and he was willing to work hard to get the reward, in a way he wasn't willing to to be told "good job" or "high five" or things like that.

 

I think there are things kids need to learn or do, and maybe they are not intrinsically motivated.  My older son does not clean his room from the intrinsic motivation of wanting a tidy, clean room where he will be easily able to find his things and not need to worry about vermin.  No.  He cleans his room so that he can be allowed to play Minecraft.  That is the only reason.  Or -- it would be something else.  Maybe it would be so he didn't get in trouble.  But he does not care about his room being clean.  I care, and his dad cares.  He does not.  I have high hopes that when he is an adult he will choose to keep his surroundings clean out of a sense of pride, or embarrassment of being too dirty, or of enjoying a tidy and clean environment, etc.  

 

So that is some more response to the extrinsic vs. intrinsic motivation thing.  I do totally agree about rewarding intrinsic motivation causing people to feel like they do not have the intrinsic motivation anymore.  

 

But that does not say anything, to me, about a situation where a child does not possess intrinsic motivation to do something, or the process of thoughtfully trying to inculcate and provide opportunities for the development of intrinsic motivation.  

 

I also think it is comparable to some "whole reading" things where they are just going to encourage the kid to read, by making reading seem so awesome, surrounding the child in a literature-rich environment, that is full of wonderful books, and is really, really lovely....... but they are not teaching skills that some kids need to be taught.  It is not as lovely to do phonics instruction or something like Barton, as it is to do lovely reading activities.  But if that is what it takes, then that is what it takes.  But I also think it is again a false comparison ---- because I don't think that people "only do one or the other."  People are doing things to entice their kids to like reading, and to teach them the skills, and to show that reading is fun, and that parents value it, etc.  All those things do go together.  But I feel like -- think of the kids who lack the skill instruction and do not learn to read, even though they had everything else.  B/c of going through that with reading with my oldest son ---- I have wanted my younger son to get skill instruction that he can then go out and use in every day life, the same way I wanted my older son, not just to read readers, but to read books he would want to read.  I also did not want him to sound out and read words, without paying attention to what he read and being able to track meaning as he read, and all of those things.  I was not throwing all of that out, just because of also doing extreme phonics.  (I do think that older forms of ABA sound like they were kind-of like only doing drill of phonics, and not working on everything else that goes along with being a reader -- because it does take more than phonics instruction to be a reader.)  

 

But anyway -- I do not think any of that means that RDI is not the best choice for your son.  

 

I just disagree in some ways with that blog post.  

 

But I do not think the place she worked sounds good at all.  I think her criticisms are good criticisms.  I just do not agree that her conclusions would necessarily apply to other situations.