Pros and Cons of ABA Therapy
Right about when my son was 2.5 years old, we started him on ABA Therapy. We had just seen a developmental paed and he had just received a autism diagnosis. She said that we MUST try ABA therapy. It is the only thing that works best for kids with autism and it is the world’s “Gold Standard” of autism therapy. I’m not going to go into detail about what is ABA therapy. There’s plenty of info out there. What I am going to share is what we like about it and what we don’t. A little disclaimer since this is SUCH a controversial topic. We only did ABA for 3 months. For it to “really” work, you apparently need to commit 6-12 months into it to see results. We couldn’t wait that long and you will know why as you read on. Some ABA defenders might say that 3 months is too short. For us, when we know it, we just know (and this should be the way to approach any form of therapy… ABA or not… trust your gut!).
So let’s start with pros.
It’s done at home
ABA therapy is the one therapy in Malaysia that has an option to be home based. As opposed to Occupational Therapy (OT) and Speech Therapy (ST) which require students to be in the centre. I know we are in a pandemic and at the height of online learning, but this was before all that. So having home therapy sounded appealing to us at that time, so our boy would be in a familiar environment and we don’t need to brave crazy traffic.
The centre we were attached to did have an in-centre facility but it was quite full back then so even if we wanted to do it in-centre, we couldn’t. But that’s ok because we were happy with home therapy option.
One of the good things about this therapy is that you will have a team of therapists involved. Usually 3 – one BCBA (means they are certified by the board) and 2 regular therapists who will be the ones working with the child everyday. They take turns so the child gets exposure to both. Every 2 weeks, the BCBA comes in to supervise the session and make sure everything runs as per planned. Occasionally, we get replacement therapists whenever the usual ones are occupied. It was good that our boy get exposed to many people and it has definitely helped him get over some fear of strangers.
Some programs are actually good
In ABA therapy, they usually design specific programs based on the individual needs. My son was considered “moderate to severe” so a lot of the programs were supposed to target the basic skills like following instructions, play skills, fine motor skills, and some form of communication (especially receptive language). Here are some programs that worked with my son immediately.
This fancy term basically means letting your child know something is going to be over soon, to manage their expectations. They do this by counting down verbally or using a timer. They use the timer A LOT in session! Personally, I just use the countdown method (and I still do) at home with him. So let’s say he wants to play in the fridge, I’ll let him have a go at it for a minute and then I will tell him it will be all done in 30 secs and count down from there. It really worked! You can countdown from 10 mins, 5 mins, 2 mins or whichever your child prefers and depending on the activity. Some activities may need a 10 minute countdown for them to mentally prepare themselves, while some can be a mere 5 seconds.
TIP: You can also do the same for Youtube videos if that is a challenge for you. Tell them you will turn off the iPad after 3/2/1 more videos versus just shutting it off.
This was another simple one that worked immediately. Basically, it is managing expectations again by letting him know what happens first before something else. So lets say he really wants to eat cereal but he doesn’t want to drink water. We can negotiate with him by saying “first drink water, then eat cereal”. During that time, he was really frustrated all the time because we didn’t know what he wanted and he couldn’t tell us either (he’s not yet verbal). Using first/then helped him realize that we do understand what he wanted and we WILL give it to him, but he needs to do XYZ first. It is not 100%, there will be times where he won’t do it but at least it is not all the time.
They can teach PECS/AAC
In Malaysia, it is extremely hard to find speech therapists who uses PECs/AAC device. PECs (Picture Exchange Communication Boards) and AAC (Augmentive and Alternative Communication) can help a non-verbal child communicate better and even learn words. I am thankful that during our time in ABA, PECs was part of the program and our therapists got our PECs all sorted out, printed, laminated etc. Even though our son at that age was able to understand PECs, he didn’t really prefer it. But it was still good to have it all set up. I tried the PECs with him a year later and he got it this time!
Parents are involved
They make sure parents are committed and we had to go through extensive on-boarding training that lasted 1.5 days. We were briefly trained in the ABA method during this training so we can apply the principles after therapy hours. The schedules are structured and there were team meetings twice a month where one parent/caregiver are required to attend. There are also regular assessments by a psychologist hired by the centre every quarter to check on his progress.
Everything is well documented
Besides us getting a ton of manuals, one of the selling points of ABA is that they believe in collecting data. I don’t disagree. Data is important! They tracked down every single interaction, successful and unsuccessful trials, his strengths and weaknesses (mainly weaknesses though!) and behavioral issues that popped up in every session. They also got us to track his sleep to see if there is a pattern to his sleep issues. Thanks to their behavioral tracking, I even managed to find out some sensory triggers in our home that was triggering him. Being a new special needs parent at that time, I really couldn’t “see” the trigger because I was so inexperienced. It helped to have another person at home to see the things I couldn’t.
Now on to the cons…
It’s too intensive
They recommended a 35 hour therapy a week schedule for our boy who is only 2.5 years old. That’s just crazy! It was like he had to work a full time job. We opted for a 15 hour week (part time as they call it) because our boy was already attending a special needs pre-school and he was doing fine there. We didn’t want to break the momentum and honestly, I don’t believe in subjecting a young child to so many therapy hours regardless of how “play based” it is supposed to be. I do not want him to remember his childhood as all “work” and no play.
ABA is exclusive
…And not in a good way. We were told that our child didn’t need OT and ST if we did ABA and it would be covered as part of their programs. We were having very good progress with his OT and had just started speech at that time. To discontinue those didn’t make sense so we went ahead with it anyway. I know of ABA therapy in USA where the ABA therapist would be around during OT and ST to help out (they kinda overlap each other) but here, there is no such thing.
They also hinted (over and over again) that it would be best to do 35 hours a week instead of going to school in the mornings as the school’s techniques may clash with ABA. They were right about the clash though. Later on, I found out his school was actually anti-ABA due to some past experiences. I personally didn’t feel comfortable taking my child out of pre-school because I wanted him to have some social interaction with his peers so I kept him in school.
ABA is also against other alternative treatments like Son-Rise program (SRP), Floortime etc. At that time, I have also started dabbling into SRP and found that the SRP method seems to fit my son better. However, there was no way I could do both successfully as ABA is the total opposite of SRP and ABA took up so much of his time!
Some ABA methods just didn’t work
Discrete trials is the method of breaking down the task into small parts and working on the small parts first. I have no issue with this part. I do think it is helpful to break down the task. What I felt didn’t work was how they considered a child to have “mastered” a skill. To consider he “passed”, my child had to do the skill 3 consecutive times in 3 different sessions a day (one session is 20 mins with a 10 min break and there are 3 sessions a day). For example, the skill would be “throw ball into box” and he would have to successfully do it 9 times a day to pass. Even though he could do it a few times, he still wasn’t good enough and he spent a good 6 weeks trying to throw ball over and over again just so they can mark him as pass. This is a really time consuming method and because my child is highly defiant (possibly ODD), he gets frustrated and just walks away or escapes. When he is frustrated, obviously he can’t perform well. Can he actually throw the ball? Yes. Can he do it 9 times? No.
This felt like we were wasting time because he can’t move up to the other tasks until he “passes” this. Sometimes, we can KIV certain skills and move on, which we did. But every new skill they try to teach he always does it the first few times and never 9 times. So his progress as they said was “very slow”. We have discussed this in many meetings but they were unable to drop the scoring criteria so this remains a challenge for my son. I just didn’t feel this way was the right way to teach him. If my boss at work told me to write the same email 9 times for it to be considered a job done I think I will flip too!
Rigidity of programs
As mentioned, for him to move up a skill he needs to pass the precursor skill. One day I had the time to go through the skill list and I realised he was able to do some of the skills on the list BUT he wasn’t able to do it on demand. So its a fail.
Also, some skills that I felt was needed like pointing and waving were considered “too difficult” for him and he’s not there yet. After we stopped ABA, I took it to my own hands to teach him pointing and was able to do it within a month. Yes, I skipped “steps”, but that’s okay. We don’t have to follow the developmental chart because people with autism does not follow it (hence why they have autism!). My son, now 3 years old, has yet to learn how to drink from a straw but he can drink from an open cup. Sometimes, we need to follow the child’s lead vs a textbook’s timeline.
I agree that motivation is VERY important, but the way it is done matters. ABA will only reward a very good attempt or success. It was frustrating to watch. For example, if my son liked to press a button on a toy, they use that toy as “reinforcement”. If he does his task he gets to press the button. The problem is, my son has demand avoidance, a defiance problem and low frustration tolerance. Combined, you get a really angry child who’s being forced to work for an incentive. He hates the fact that he’s forced to work and in the end he just develops a negative feeling of the toy he likes. We not only lose one potential item to motivate him, we also get a crying child in almost every session.
Also, the feedback we often get is that there is not a lot that motivates him so progress is slow. It is true, my son is rarely interested in toys so there was barely anything they could use. He was interested in eating but I didn’t want them to use food as a motivation as he was already forming negative associations with toys used in therapy. I didn’t want to risk it with the already limited types of snacks he will eat.
Instead, I found the SRP way of motivating the child much easier on him and me. The child is rewarded even for the smallest effort or even what appears as “no effort” after a few attempts of asking them to do it. This is done to build trust that “hey, it’s okay if you can’t do this task or say this word. We still love you and you still get to play with your toy”. We never really know why they can’t do a specific task anyway. Perhaps their brain knows what to do but due to motor planning issues isn’t communicating to their limbs. Perhaps they did move their lips to form a word but we didn’t hear a sound and assume they weren’t trying. We won’t know! So to assume they “failed” because they physically can’t do it and withhold the reward just doesn’t make it better. This lowers the child’s already low self-esteem. Trust me. Our special child knows that they have more struggles than others.
Fun fact: Positive reinforcement is the same technique used in training…DOLPHINS!
He started self harming again
This was one of our biggest red flags. After a month of ABA therapy, he started head-banging again. Something he has stopped for a few months since he started OT. While some will say ABA is really good for their child, many autistics themselves talk about how bad it was for their self-esteem and mental health. These are the ones who did ABA as a child and now grown into adults who are able to speak out. I always believe in listening to people who’s been through it all. Of course, it is true that ABA has evolved over the years and is less inhumane than it was in the past. Did you know, back in the 70s, therapists used to lock up autistic kids in a closet during a bad behavior? Much has evolved over the years and I do hope it continues to evolve to be more autism friendly.
Anyway, I started observing my child too for potential trauma. Initially, it wasn’t obvious because he did really well in the first month (learnt a bunch of new words, played really well, generally happy). When the second month came, he has already been fatigued by the repetition of tasks and the need to perform well. That’s when the head-banging re-emerged. He also doesn’t seem to enjoy the sessions anymore and kept escaping to look for me. He even requested to leave the house to the playground VERBALLY! It seemed like progress at that point but on hindsight he was just so motivated to leave the session. Sadly, it still didn’t hit me on what was going on until our 10 day Christmas break came. During the break, not once did he ask me to take him to the playground. He also seemed happier in general.
That was when I put two and two together. He escapes because that’s his way of telling me how he felt. I also started noticing that he would ask for food and milk very often during therapy but not during the Christmas break. Wow, look at all the strategies he had been plotting on how to get out of session! He was trying to tell me something all along.
They stop him from stimming
If you know an autistic or is someone who has autism/Aspergers/ADHD, you will know that stimming is self-soothing. They do it for a variety of reasons – sensory, to cope with anxiety, boredom etc. One of the key components of ABA is to actually stop stimming or change it to a more acceptable way of stimming. For example, my child does finger flicking as his stim and one of the ABA goals is to get him to stim with a fidget toy. I am not against using fidget toys but to me it isn’t important how he stims. I told them we are not going to stop his stims. They agreed but they were still quite adamant that eventually we would need to do something about it else he wouldn’t be able to progress. That was not in line with my views on stimming. I’ve also noticed that sometimes in activities they would ask my son to do “nice hands” where they place his hands on the table so he would not do his finger flicking/fidget. I’m not saying its wrong to adjust his hands, but all I wanted was for the therapists to understand WHY they need to stim. Sometimes, a child fidgets because it actually helps them focus. This is especially true for children with ADHD tendencies. There’s plenty of articles out there on this topic. I wonder why ABA haven’t picked up on them yet hmmm…
ABA is very expensive
When we first saw the fees we got the shock of our lives. The fees cost about RM7,000/month (USD1700/month) for part time and RM11,000/month (USD2,700/month) for full time. Plus there’s a few thousand ringgits that needed to be paid for the parent training, admin stuff etc. In addition to the hefty fees, there is usually a contract which means you can’t leave immediately. You will need to give notice to pull your child out. Note: In Malaysia, ABA therapy is usually not covered by insurance companies.
So when things weren’t working out for us, I remember being very torn because we couldn’t get out of it immediately. Should we stay on or should we break the contract and “waste” thousands of ringgits? Honestly, we knew ABA had a bad rep even before we started. But at that point, we were pressured by the doctor to give it a try. If we don’t try we don’t know right? Coincidently, we were able to seek financial aid for it, we decided to try it. However, for all the reasons mentioned here, we found it unsuitable for our child. I would not say that it will never ever work out. I do understand therapies evolves over time and who knows maybe ABA will be better in future. I also understand that different kids might respond differently to it. What we know is that it didn’t work for our child at that point of his life. So we pulled him out despite the contract.
Currently we are doing online speech therapy (which works out great for him surprisingly!) and part-time Son-Rise program. We temporarily stopped OT during the pandemic because of the circumstances but I do some OT with him at home. It is not much honestly but we do see some progress in him, more than we ever did in ABA despite the extremely minimal hours of intervention we have now. Hope this gave some insight to those who are curious. Again, this is our experience with ABA. There might be others who find it amazing and we respect their choices. At the end of the day, we know best what suits our child and we must always trust our instincts 🙂