(Author's note: In addition to my views on ABA, I also wanted to give readers a parent's perspective. I reached out to Amy Allen, whose son was diagnosed with autism at a very young age, to share her experiences with ABA. Today's post is her story in her own words.)
My son Tanner was diagnosed with Autism when he was 22 months old. I always felt like something wasn’t right since birth because he was extremely fussy and had colic-like symptoms. Every trip to the pediatrician was a chore as he screamed and cried the whole visit. My pediatrician reassured me that he appeared to be developing normally and perhaps was just a strong willed baby. Around the time he was 18 months old, I approached the pediatrician again saying that he did not seem to respond to his name. She said she felt his eye contact was good and that we should wait to reevaluate on his 2nd birthday. She did suggest I have his hearing tested and start him in speech (because it could not hurt anything). Both of those suggestions were disasters. He screamed the whole time during the hearing evaluation because he was not happy about headphones on his ears, and he wouldn’t sit still. Speech was also a disaster because he cried and screamed the whole time when he could not do what he wanted.
After reading more on the internet and feeling like he had classic signs of autism, I spoke to a neighbor who was a pediatric neurologist, and she suggested I see her awesome pediatrician. The new pediatrician referred me to the Autism Clinic at Texas Children's Hospital to have him evaluated there. I could not get an appointment to be seen or evaluated for at least 5 months due to a large waiting list! I called my new pediatrician back to tell him, and fortunately for me he knew the head of the department and was able to get me in on a study they were conducting on how children with Autism are diagnosed. The department head informed me he could not officially write the diagnosis because this was just a study, but he could talk to my pediatrician and have him write the diagnosis and this would help expedite the things so we could get started with early intervention.
After the study, the doctor over the autism clinic informed me that Tanner showed all the signs, though he could not tell me how far on the spectrum he was since Tanner was so young. He said he wanted to give me 2 pieces of advice before I left. First, I should get Tanner in as much ABA therapy as possible, and, second, I should get Tanner into speech therapy. He had his social worker from Texas Children's give me a pamphlet and two business cards of places that did ABA therapy. He reassured me that with good therapy, the outcome can be very good.
The diagnosis was a hard pill to swallow, but at the same time a relief to know the reason things were so hard with Tanner. I knew at that moment I needed to find out what ABA therapy was and how I would get him to that and manage a 2 week old baby I had at home.
I called the number on the first pamphlet and found out they just offered some parent training a few times a week, which was not covered by insurance. The hours of the training were impossible because I had a newborn at home, and an almost 2 year old who I could not even leave with a sitter. I called a center in Houston that was very rude and short to me when I spoke to them. I had to call several times and finally had a call returned to tell me they did not accept my insurance.
I called the last business card and a girl named Alex took my call. She was one of the kindest, most genuinely understanding people, and she was incredibly reassuring. I think we talked for at least an hour. She answered all my questions and concerns. How much ABA therapy is needed for a child this young? What if they could not manage my son? If he cried too much, would they call me to come get him? What if he kicked his shoes off and threw them? I was actually worried his behavior would be so bad they would make me pick him up and tell me there is nothing they can do for him! I had so many concerns because, at this point, I really did not understand what all went on in ABA therapy. I know now that nothing he did would surprise any of them, and that they are here to HELP me eliminate these behaviors. Looking back, I am so thankful I put my trust in this center and the therapists.
So after answering all my questions, Alex had to check my insurance to see what kind of coverage our plan offered. She informed me this could take a few days. If we had coverage, our second step would be for me to come tour the facility. Our final step would be to bring Tanner in for a 2 hour evaluation.
So, fast forward a few weeks. After our insurance was approved and we had taken the tour, Tanner’s evaluation suggested he have at least 30 hours a week of ABA. Although we had the option of center-based or in-home therapy, I felt like center-based fit our needs at the time. Later, we added 2 hours a week of speech therapy, which he could do with a speech pathologist who worked at the center. He also had a rest time after lunch because he was so young that he still took naps. So, overall, he was there Monday through Friday 9-4. I know it sounds like a lot, but it was worth it. I missed him like crazy and felt sick almost every day he was there the first few months. However, every bit of progress we saw from day one made it all worthwhile. His first day home he was trying to say milk and signing it. He never was able to do this before. It was a huge step in my eyes.
I never personally went the Early Childhood Intervention route. I did call to inquire about getting started because I thought the services were free. I was informed the evaluation is free, but it would take at least a month to get one. They also said if he was able to receive services from ECI there would either be a sliding scale based on income, or we would have to use insurance. I thought, What’s the point in using ECI when they are still going to charge me a fee for service? The center I had already spoken to could get him started before I could even get an evaluation from ECI. I also knew ECI specializes in all types of things, but this ABA center focused completely on changing Tanner’s behavior and teaching him how to communicate his wants and needs in an intense program which sounded way more effective than seeing ECI once or twice a week.
I do feel extremely fortunate that I lived in a big city which had private services for Autism more available than some areas. I know today, four years later, I am seeing a ton of BCBAs offering services in home and centers opening up as well. When I started, I only knew of two centers in Houston and ECI which could have possibly helped us. Now it feels like there are so many more options, as long as you just take a little time to look.
I am a huge advocate for ABA therapy because I see what it did for our family and what it continues to do. As a parent, it takes a lot of patience and proper training and time to be able to do what ABA therapists do, so I believe it’s important to use a BCBA who has extensive knowledge.
Tanner is not going to an ABA center anymore, but I still use and consult with several BCBAs to help with issues at home or out in public. I also try to read books or blogs or websites as much as possible to educate and learn things. I know that the more work as a parent I put in now, the better it will make our lives in the long run.