at a loss (ASD and ABA)

oandmplus1

DH and I have been struggling lately with what to do with our 3.5 year old DD who is ASD, non-verbal and globally developmentally delayed. She has been getting ABA for almost 2 years now, as well as private OT and speech. I should mention she also has some vision issues, but we honestly don't know how bad her vision is (although we think it is good in one eye at least). For the past 2 years the only form of communication we have focused on with ABA has been pointing and sign language. We have made very little progress. She has 1 functional sign (drink), and 2-3 others she uses with prompting that do us no good (shoe, daddy, and cup). In their defense, she is tough, as soon as you find something that works as a motivator, she decides she doesn't like it anymore when you make her work for it, and we recently changed the signs we are working on to all food (again, they don't help much - candy, pancake, potato chip - not foods we give her on a daily basis, but foods she loves and are good motivators).

At 3 she started in a self contained preschool class with other kids with special needs (not all ASD, but a mixed group who are similar to her developmentally at least). She gets therapy there as well (PT, OT and speech). Her speech therapist has been working on something called talk boxes (similar to PECS I would think, just a 3x3 physical button with a picture that says the word of the picture that she can use when she wants something). I was excited we were finally going to try something new for her to communicate with, but ABA doesn't think she will be able to attend enough to see the differences in the pictures and make a meaningful choice when offered 2 options. We are frusturated because she is more frustrated. She wants to communicate, we can tell, she just can't figure out how so that we understand.

My DH are having a really hard time deciding if ABA is right for her still. She LOVES school. She runs for the bus every day (literally). And is always happy when she gets home, but will just school be enough? She doesn't seem to hate ABA, but she does not enjoy being there. It just seems so intense for a 3.5 year old to sit in the same room all day, especially one like DD who is very much a sensory seeker and needs stimulation.  I understand the point of ABA is to not let her escape to get out of doing things that are difficult. But with a child who is non-verbal and can't tell us how she feels, how do we know if what we are doing is harmful (as some articles or bloggers or autistic adults have said), or truly is the right path. We want her to be happy, and be herself, but we also want her to be able to reach her full potential, whatever that might be. Are there options out there are incorpotate the sensory needs of a child in to ABA?

I am not trying to start a big debate on whether you think ABA is right or not, I think it is a personal choice for everyone. I guess what I am asking is, who do we talk to to get advice on how to make this decision. Who can give us an unbiased opinion on what options might be best for our specfic child (because we all know every kid with ASD is different)?

kcisthebombdotcom

I admit that philosophically I'm opposed to Aba (but I'd never in a million years judge it because it seems to help some kids immensely) but if after two years I wasn't seeing improvement I would probably switch to something else. Dd is in a teacch classroom and has made big gains communicatively. We also did floor time when dd was in EI and I felt that laid the groundwork for dd to imitate which lead to the language explosion.

kcisthebombdotcom

Ah I just realized I didn't really answer your question. Your developmental pedi is the go to person to discuss services.

SantoriniSteph

We did ABA for a year and DS was a much happier kid when we stopped.  I'm not completely against ABA, but it didn't feel right for our family.

hopecounts

I am a huge fan of ABA, it has worked winders for DD. I shouldd add that both her previous and current ABA teams are more ABA light then strict ABA (i.e. a lot of floortime/playbased work with DTTs snuck in) BUT if in 2 years it hasn't helped her I would move on to other options. Is RDI an option in your area? From your description it might be a good fit for her.

abigail912

I think if you are not seeing any progress it would be time to look into to something else.  As far as your question about incorporating sensory need in ABA, our clinic does a wonderful job and I think that is way my son enjoys going so much.  When we first started we filled out a sensory profile so they knew what he seeks and avoids.  They have all kinds of cools swings, sensory bins, and a trampoline in the clinic. But if you are not seeing improvement it makes since to try something else.  I am a social worker for a preschool program and we collaberate with a special needs preschool program.  I have seen our special needs kiddos make amazing gains.  It is awesome she loves schools and is excited to go=)

ToastieSimons

Can you put her on a leave of absence from ABA?  I tend to find that when my kids get a good break they are able to relax a bit and fully master more skills.  

For example, we have been taking the last month off of private PT and EI is only really working on stretching.  He has mastered, pulling to stand, cruising, and climbing furniture in the meantime.  It's like when we stop pushing their brains constantly they can finally finish mastering something.

And, if it's just a leave of absence and you find her skills regressing, or you think it was super beneficial she can start again.  

Have you considered starting your own PECS system?  She sounds much more ready than my DS1 (4, globally delayed, no pointing, no signs, no words, no gestures) and they use communication immersion at school.  Switches, Ipads, PECS, AAC, ASL all day long.  You can start by taking a picture of parts of her daily routine. Such as a bowl of cereal with the word cereal under it.  You would then give her the card and say "CEREAL" and then feed her cereal.  If she seems to catch on you can give her two cards "CEREAL" and "PANCAKES" and let her choose one.

From there you would give her more and more choices and she would have to pick and hand you one.  

You could also try an Ipad with Speak For Yourself or Proloquo2Go (although I have heard this one is difficult for people with fine motor issues).

I just get frustrated with your therapist for writing off your DD's potential when it sounds like they haven't even tried PECS with her.

Junebug060609

Auntie, Thank you for that last post. I've been hearing a bunch lately from the anti-aba camp. Been sticking with ours as it seems to be helping. Plus I'm present for80% of his sessions and know that his struggles are of the "I don't feel like working" variety, not the "I'm in distress" type.

oandmplus1

-auntie- said:

kballou said:

DH and I have been struggling lately with what to do with our 3.5 year old DD who is ASD, non-verbal and globally developmentally delayed. She has been getting ABA for almost 2 years now, as well as private OT and speech. I should mention she also has some vision issues, but we honestly don't know how bad her vision is (although we think it is good in one eye at least).

How much ABA is she doing? For a kid with a larger degree of impairment and atypical behavior at thhis point in time, 20-40 hours is what would normally be done. I don't  know that an integrated preschool is the best option for a kid who should getting intensive ABA. 

 For the past 2 years the only form of communication we have focused on with ABA has been pointing and sign language. We have made very little progress. She has 1 functional sign (drink), and 2-3 others she uses with prompting that do us no good (shoe, daddy, and cup).

Every kid with ASD has their own unique presentation. She may not be in a place cognitively where she understands communication as a means to getting her wants. It might not have clicked for her.

 In their defense, she is tough, as soon as you find something that works as a motivator, she decides she doesn't like it anymore when you make her work for it, and we recently changed the signs we are working on to all food (again, they don't help much - candy, pancake, potato chip - not foods we give her on a daily basis, but foods she loves and are good motivators).

It's hard if they can't find effective motivators. Or if she's just not engaged enough to enjoy the attention of someone working with her.

At 3 she started in a self contained preschool class with other kids with special needs (not all ASD, but a mixed group who are similar to her developmentally at least). She gets therapy there as well (PT, OT and speech). Her speech therapist has been working on something called talk boxes (similar to PECS I would think, just a 3x3 physical button with a picture that says the word of the picture that she can use when she wants something). I was excited we were finally going to try something new for her to communicate with, but ABA doesn't think she will be able to attend enough to see the differences in the pictures and make a meaningful choice when offered 2 options. 

It's a shame they're not all on the same page. But if the BCBA hasn't seen her point with meaning or use her signs, I can see where she wouldn't anticipate success with your SLP's talk boxes. Is there some reason to use a "talk box" rather than a standard PECS?

We are frusturated because she is more frustrated. She wants to communicate, we can tell, she just can't figure out how so that we understand.

How can you tell she wants to communicate if she isn't attempting to? Can you take whatever that behavior is that means she wants to tell you something and use that as the basis to connecting with her a la "Sonrise"?

My DH are having a really hard time deciding if ABA is right for her still. She LOVES school. She runs for the bus every day (literally). And is always happy when she gets home, but will just school be enough?

Probably not. Given her presentation, a rigorous ABA program seems her best shot for making progress. If school looks like she has fairly free reign to do as she likes, it might be interfering with her acclimating to ABA. Where does the ABA happen?

 She doesn't seem to hate ABA, but she does not enjoy being there. 

She doesn't have to like it. Sometimes when kids are being asked to do things that are hard for them, they don't enjoy it. That doesn't mean you just give up. A good BCBA program could have some natural "play-like" elements, but she's there to learn and grow and that isn't always going to be a laugh a minute.

It just seems so intense for a 3.5 year old to sit in the same room all day, especially one like DD who is very much a sensory seeker and needs stimulation.  I understand the point of ABA is to not let her escape to get out of doing things that are difficult. But with a child who is non-verbal and can't tell us how she feels, how do we know if what we are doing is harmful (as some articles or bloggers or autistic adults have said), or truly is the right path. 

Adults with ASD whining about their mean mommies making them do ABA- It's why they have the bandwidth to read and write and complain about their childhoods. FWIW, ABA as it is practiced today is not the same animal as was done with those now middle-aged children. Aversives are largely gone. More skills are addressed in a natural manner so long as the child can learn in that manner.

We want her to be happy, and be herself, but we also want her to be able to reach her full potential, whatever that might be. Are there options out there are incorpotate the sensory needs of a child in to ABA?

Happy in the moment might limit her ability to be happy in a range of options as she gets older. If she does a robust ABA program, she'll still be herself, but she'll be her best self and have the fewer constraints placed on her future.

Most BCBAs approach sensory issues behaviorally. While we never did ABA, we did do behavior approaches to sensory issues rather than OT. We had very good results.

I am not trying to start a big debate on whether you think ABA is right or not, I think it is a personal choice for everyone. I guess what I am asking is, who do we talk to to get advice on how to make this decision. Who can give us an unbiased opinion on what options might be best for our specfic child (because we all know every kid with ASD is different)?

Every kid is different. We didn't do ABA because DS didn't need to learn the kinds of zero order skills or fade undesirable behaviors that ABA is best for. If he had been non-verbal, I'd have been all over it.

Wow it's hard mobile bump. Thank you Auntie, your response really helped me. She has been doing 10 hours a week and preschool the rest of the day. We do incorporate some of ABA at home, but we don't sit and do it all. We incorporate the signs they work on and we try to redirect like they ask, and practice some of the things they do. We also have all of her babysitters go to a session so they can incorporate the things she is working on as well, but consistency at school is an issue.
The school didn't feel she had an ASD diagnosis when her initial placement was done, but said they still would have put her in the same class either way. Her teacher is now seeing the signs more and we have been talking to her teacher and therapists at school more and more trying to get some consistency, it doesn't seem like the school does a ton with ABA.
I think we are going to try initiating PECS as some of you suggested. I feel like she is trying to communicate by pulling us to what she wants, the table when she is hungry, the fridge when she wants a drink, the rocking chair, her exercise ball, the door to the yard and her swing. She gets very frustrated when we don't follow to get her what she wants. She starts to scroll through random signs to get them (usually she doesn't know a sign for what she wants).
We talked to our BCBA and we are planning to increase her therapy. We also requested the OT send them some ideas for sensory breaks for her, which they are willing to try. We are also shopping around for other BCBAs to see if there may be a better fit for us, but you're right Auntie, we do think she needs this, we just have to figure out a way to make her more successful with it. I shouldn't say she hasn't made much progress, she has in many areas, just not specifically with communicating. She learned to point, and ask a peer to play by grabbing their hand (she used to run away from all peers). She has learned imitation too, which they said is her best skill right now.

oandmplus1

I am not sure why it was not increased sooner, we had trouble getting all our sessions covered for a while, but we are increasing them now. They are training a new tutor in her program now.