ABA Therapy

Running a private in-home ABA program for your autistic child is not for the faint of heart.

It is hard, exhausting, time-consuming, nerve-rattling, isolating, and of course very expensive.

That said, the benefits we’ve seen from our ABA program have been amazing, and exactly what we believe Hamhock needed.

Hamhock started with 30 hours per week in September 2006, 3 1/2 months after diagnosis, and one month before his third birthday. Superboy had just turned one in July 2006, so it is the only life he really knows – having tutors come into our home morning and afternoon, 6 (sometimes 7) days a week, Hamhock “in class” while Mommy and he do grocery shopping and run other household errands, Mommy being stressed and otherwise mentally preoccupied, tired from working 30 hours at night to help pay for the therapy, all the while trying to provide a “normal” childhood for both boys (and keeping her marriage somewhat intact).

COST

Our monthly average cost for 35 hours weekly  of ABA Therapy was about $2,000.  We paid $1,600 out-of-pocket, and the United Healthcare Children’s Foundation (UHCCF) paid the remaining $400 from a grant we received.

ABA CONSULTANT

We hired an Autism/ABA consultant who trains our therapists for Hamhock’s program: Pryor Consulting. Scott has been involved with healing kids with autism since 1993. He started out while he was in college as a therapist himself, and definitely has a real talent for working with kids on the spectrum. I would be glad to have him as a therapist myself. Scott charges an initial fee of $1000, which covers his 2-day parent/tutor training. After that, he charges $125 an hour for staff meetings, which last usually 2 1/2 hours. We held staff meetings every 2 weeks at first, and now every 3-4 weeks.

I would definitely recommend Scott as an ABA Consultant in Utah.  Although he is not super attentive after your first month or so (he still has one of my video tapes, which he ‘forgot’ to give me feedback that I requested), he definitely addresses any concerns you have in your regular staff meetings, which occur on a regular basis.  I found his rates to be fair and competitive in the industry.  There is another center that provides the same ABA consulting services here in Utah:  Redwood Learning Center.  I had initially called them and received an information packet from them; and at that time they were comparatively priced as Scott, but then we decided to use Scott’s services.  You can also check out the Utah Parent Center website for other providers in Utah.  I had called a few others; but they seemed to provide a mish-mash of services and not just strict ABA like Pryor Consulting and Redwood Learning Center.

TUTORS/THERAPISTS

We’ve hired 9 therapists total, and have 5 currently working (April 2008). They each work anywhere from 6 – 12 hours a week. We started out paying $8.00/hour, with 50 cent raises every 6 months. Now I hire starting at $9.00/hour. We pay “holiday pay” for Thanksgiving, Christmas and New Year’s. We give $25 gift cards for birthdays and Christmas gifts. We pay for all supplies needed.

Therapists are probably the hardest struggle to keep your program running.  In a perfect world you’d like the same therapists for the duration of your program.  But in a normal world, their needs change, they quit, get other jobs, don’t like this job like they’d thought they might, need more money, etc. etc. etc.

TRAINING

The first morning of our training with Scott went very smoothly. He mostly gave me, Foo and our therapists the “big picture” overview of ABA Therapy (designed and tested by Dr. O. Ivar Lovaas at UCLA: Lovaas Institute).

On that first day I was not prepared for what Scott did after lunch. He asked Hamhock to “come here” to the little wooden chair in front of his little wooden chair. He rewarded him with tickling and verbal praise for coming to the chair, but as soon as Hamhock was ready to run away, Scott didn’t let him. Of course this made Hamhock mad. So Isaac tried again, and Scott just held his arms in front of Hamhock, not holding him down, just using his arms as a barrier from leaving. Well Hamhock doesn’t like anyone imposing any sort of a rule on him, so of course a full-blown tantrum started, and didn’t stop for 45 minutes!

Holy crap! I felt like it was almost child abuse to keep this little 2 year old (almost 3) in a little wooden chair. “Let him run around!” my heart cried, “Let him do what he wants, don’t “force” him to sit in that little chair!” But my head said, “patience, Scott knows what he’s doing, trust his experience. And besides, he HAS been running around for almost 3 years – the running around has not helped him learn! So shut up and learn from the expert.”

I kept watching Scott’s face; it was completely calm and patient. It confirmed to me that he knew what he was doing; I needed to trust his experience. As soon as the moment occurred when Hamhock calmed himself down, and I’m mean literally THE MOMENT, Scott gave a huge verbal praise reward to him and said “go play!” He ran over to me and cried a little more. The key was to reward the behavior we wanted – the moment where Isaac CALMED HIMSELF DOWN.

He had been completely unable to do that up until this moment.

That is the basic premise behind ABA – rewarding the behavior we want, and ignoring the behaviors we don’t.

PROGRESS

This exercise alone decreased Hamhock’s head-banging tantrums by probably 75-90%. I couldn’t believe it! After at least 9 months of watching these horrible, head-banging tantrums with no skills to help him calm himself down, I felt like I had a miracle.

That September, Hamhock started our with only 5 true words. He mastered the word “more” on 2/14/07, and the word “baby” on 3/3/07. Learning the word “baby” was a break-through. After he mastered that one word, I heard him say “bye-bye” and “bee” for the first time. His verbal skills just flowed from there. By April 2007 he was learning 2 word sentences.

One night when putting him to bed I was just about to close the door, when I heard his little voice choke out the words: “Hold . . . my . . .hand.” It made me realize how HARD it has been for him to form the words and communicate his needs and wants. I think of it kind of like learning German when I was a junior in college, studying abroad in Heidelberg Germany. You can kind of understand what people are saying to you, but it takes a lot of effort to translate in your head what you want to come out of your mouth. It took me probably one and a half years before I didn’t have to translate in my head, and words just flowed out of my mouth. Here was my little 3 year old boy, trying desperately to learn a “foreign” language. Why couldn’t everyone else just understand goo talk?

As of April 2008, we’ve been doing 30-40 hours of ABA for almost 19 months. He generally has an ABA session for 3 hours in the morning, then 3 hours in the afternoon for 6 days a week. He now speaks in full 7, 8, 9 word sentences and expresses himself very spontaneously. He’s a hard working kid!

Hamhock and therapist Anya:

Hamhock and therapist John:

Hamhock and therapist Molly:

Hamhock and therapist Juli:

Hamhock and therapist Claire:

COST

Our program costs us about $2,000 per month.  We pay $1,600 per month ourselves, and a grant from the UnitedHealthcare Children’s Foundation pays the remaining $400. We live in Utah, where no insurance mandated laws exist and our health insurance doesn’t cover anything.  Getting your school district to cover ABA Therapy would require that you first start with an IEP with your school district, and then fight like the dickens until you wear your school district down to eventually come up with some sort of a compromise to cover your ABA program.

The biggest challenges I’ve discovered in running a private ABA program are keeping good therapists. It is also a struggle when therapists need time off (which is normal, and they deserve to have), but then I’m left with nothing to do with both boys, and the soul-crushing guilt that I’m wasting precious time for my child’s recovery. Holidays are the worst to manage with a minimal ABA schedule, and too much bad food and stimulation!

Hamhock and his ABA work room:

You can see all of our supplies on the shelves above.  The string is a “spider-web” Hamhock made out of thread, his at-that-time current obsession.

Our decision to pursue ABA Therapy, instead of RDI, Floortime, TEACHH, ST/OT with the school district, or other therapy programs was based upon numbers. When we read about Dr. Lovaas’s study which recovered 47% of the children with autism (and by recovered it means that they became ‘indistinguishable’ from their peers), we knew we had to try. We also liked that he recommended intensive therapy, meaning A LOT (30-40 hours per week). I constantly had a nagging feeling that Hamhock needed a lot of focused therapy, and ABA answered that nagging feeling. The other therapies didn’t have any numbers to show for recovery rates.

I also discovered that Utah has very limited options/services for children with Autism. There are many supports for children with special needs, but not much designed specifically for children with Autism.

The breakdown for us was this:

1. Continue with the Salt Lake City school district in the special needs preschool, with an IEP. The preschool only met 2 mornings a week, and was not autism-specific. It served all disabilities. Of course, we would work with Hamhock’s IEP team to get specific ST/OT type services needed, and maybe ABA eventually. I spoke with a law firm that specializes in disability law, and they said the only way to get the school district to pay for our ABA was to start out with school services, and continue to work and prove and show that ABA is the most appropriate program that would address Hamhock’s specific educational needs. You would have to fight like the dickens until you wear your school district down to pay for your ABA program.  Our main factor in determining not to fight the good fight with the school district was that we didn’t want to waste precious time fighting, when Hamhock needed help now. We didn’t want to waste even 6 months; we felt that time was ticking away.
2. Salt Lake City has an autism-specific school that serves kids on the spectrum for 10 months/year, 4 days/week: the Carmen B. Pingree School for Children with Autism. Hamhock was on the wait list for 16 months for the state-funded slots. We could have started him immediately if we paid out-of-pocket $2500/month, or possibly $1800/month if we qualified for the The Carson Smith scholarship. We realized that we would spend the same amount for our own ABA-intensive program and have all the control. When Hamhock’s spot came up in October 2007, and I observed the classes at the school, I knew we had made the right decision to do a private program. They do a modified version of ABA, and it’s definitely not 6 hours/day. I wasn’t impressed that the ABA they did was 1:2 (sometimes even 1:3). That’s alot of down-time for the kid waiting to be interacted with.  Also, the therapists there looked very bored and didn’t seem very creative in their reinforcing.
3. I spoke with Tara Dean Moffat, the only certified RDI consultant in Utah in 2006, and was not overly impressed with her (I later learned that she may have been going through a divorce at the time).  Also, after reading Dr. Gutstein’s book I realized that RDI would benefit any ASD child at any age, and ABA really is most effective when implemented early.
4. The Children’s Center provides some social skills classes for children with autism, but usually not until age 5.
5. Floortime sounded like a good option to start before you do ABA if you suspect ASD before 18 months. The Children’s Center is having the director of a Floortime Play Project speak sometime in May.