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)?
Re: at a loss (ASD and ABA)
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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.