L's Journey with ABA

L's Journey with ABA

When L was 2 and a half years old, she was receiving weekly sessions of Speech & Language Therapy and attending a mainstream nursery that had requested for funding to get additional resources and support for L through an Educational Health Care Plan (EHCP), but had already started giving L 1:1 support throughout the day for 15 minutes at a time and using the Speech Language Therapy (SLT) methods, as L showed clear signs of not being able to communicate. We really had no idea about any other therapies available at that time.

During this time my husband received information on a charity who specialised in children with autism called Beyond Autism.  They had weekly 3-hour sessions for parent training in Bromley (40 minutes from us) and we decided to take a morning off work each week and to alternate between the two of us to take L. We found it was the most effective session L was having but there just wasn’t enough of it.

We also heard about another charity called Giving Tree Foundation through a family member and this charity put us forward to receive Applied Behavioural Analysis (ABA) training that summer in Wales at Skybound Therapies. This is when I first realised that Beyond Autism also used methods of ABA Therapy which were really proving effective for L.  It’s a type of therapy that is widely used in America, Canada, Australia and Norway to name a few and it has been scientifically proven to help children with autism.

I did a lot of research on ABA and found out that it had a mixed reputation in the UK, because of how it originally came about and does have its pros and cons. It is really based on whether you find the right people in the field, just like any other therapies that are used. It was clear that ABA was based on finding neurodiverse children’s motivators and using positive reinforcement. Children like L are not motivated by things that neurotypical children are. For example, L’s sister is highly motivated by just praise but L had completely different motivators and finding out what they were was key to getting her engaged so that she could learn new skills.

During this time, I thought that the only way to deliver an ABA program to L would be to quit my job, get trained in ABA and deliver a program for her at home or find a home program with ABA professionals which was also incredibly expensive. L did not thrive learning at home,  she always loved leaving the house and I knew that would be a challenge to overcome. Giving up work to do this would have negatively affected my mental health. L is always more challenging with me with her behaviour and learning, and really, I knew  I was not in any way trained or qualified to do what I needed to and it would be a long road to get all that in place. Another clear fact was that L would need at least 30 hours of weekly ABA therapy, as it is key that intensive therapy would be the only way to get her hitting her prerequisites of development before hitting any form of communication.

A month before going away for the week intensive parent training, through all my searches, I found a school that specialised in ABA therapy (I’ll refer to it as FB) that was not too far from us (but a pain in traffic). My husband and I visited the school and as I walked around, I remember having this feeling that this is the place L needs, this was our answer. I had not had that feeling before and there was just one problem: this school cost a lot of money! Money that we did not have. And to this day it makes me so sad to know that so many families miss out on a place like FB, because 1, they never hear of it and 2 they can’t afford it.  

We met with a board-Certified Behaviour Analyst BCBA, who had been in the field for years and her experience and knowledge around Autism was so profound, and the therapists at the clinic were so engaging with the children, they had all these children with different needs sitting down, engaging, and learning, something I didn’t think would be possible for L at the time. We were in the process of getting Ls EHCP at the time and it would have been months before we would even get an idea of where they would place L, let alone fund this school. So we brainstormed together, and we came to the conclusion that through borrowing funds, we would get L in this school. Looking back this was one of the greatest decisions and investments I have made in my life.  

A week before the trip to Wales, we had our assessment at FB with the BCBA we had met during our visit. L went into this session, throwing a tantrum because she was asked to sit down on the chair, at the end of the session she was sitting in the chair and engaging in play with the BCBA and playing functionally with toys (something she had never done before). The methods from that hour were so incredible, that I put them in place immediately at home. It meant that L went from not being able to sit for even a second to engaging with an adult for doing it for short periods. After this session I knew we were on the right path for L and I can’t express how that feels as a lost mother. To finally find something that not only worked but was making your frustrated child who can’t let anyone know what she needs a little closer to being happy.

The week we spent in Wales was one of the most life changing experiences I have ever had. I do recommend that regardless of the school or professionals seeing your children, it is a really good idea to train up and put the strategies in place at home for any therapies to be effective. The first day we had with the BCBA and therapist for the program, showed that L was having up to 7 hours of tantrums in a day, unable to sit to engage in any form of play with an adult, unable to make eye contact or request her needs. She would hold objects in her hands without giving them up and it was a huge barrier to her learning and communicating. By the end of the week, Ls tantrums had gone from 7 hours in the 8 hour session to 20 minutes. She was also able to point for the first time, making requests for her wants by pointing at what she needed, making occasional eye contact, and sitting at a table to work on learning or games with an adult for up to 1 minute. I walked away that week feeling so hopeful, and I knew we were finally on the right path.

L started at the school that September shortly after our trip to Wales and spent 2 years at FB, we were only able to get funding from our Local Authority for the last 6 months of that  (once we could evidence that this therapy was working) in Ls EHCP in the end. We did this by taking the Local Authority to Tribunal (more on that in another blog). At the time FB was only an early-years setting, which meant L would need to go to a school when she turned 5, hence why L was only there from just before she turned 3 to 5 years old. FB is now a school, and if that had happened earlier, I would have kept L in that setting for her primary school years.

L has highs and lows and that will always be the case for any neurodiverse child, but she loved going to FB every single day. There she received 1:1 tailored therapy to her specific needs. If something wasn’t working we asked for change and she was making progress every day, and we were finally seeing what she was capable of. They also supported us at home. I remember being pregnant with L's brother and L just not going to sleep at all, and thinking this can’t be the case when he arrives. Our BCBA created a program for us to follow, and if I followed the program to the point, it always worked. That’s what it was like working with qualified professionals who had experience with autism, something I have struggled to find in our local community.  So, what did 2 years of ABA therapy mean for L?

L went from sitting down at a table for maybe seconds for an activity to up to 20 minutes, and even 30 minutes if it is a preferred activity. She had over 100 makaton signs she used, was vocalising a range of sounds, was toilet trained at 4 years old, had reduced tantrums to almost just occasional, and 4 months before she left FB we introduced an Augmentative and Alternative Communication (AAC) device, as we felt this would be more universal and she could communicate with a wider group of people. The most important thing was that it found a way for an adult to be able to get L engaged, which meant other professionals like Occupational therapists and Speech therapists could finally engage L and have meaningful sessions.

This is just some of the progress L made, with that said she still had a lot of needs, wasn’t speaking and needed a high amount of support to carry on with her progress. I can still say that ABA was life changing for L. It gave her exactly what she needed to engage and learn. I know ABA gets a bad reputation but it's usually when it's not used by the right individuals and it has Made L a happier child who is now able to communicate her needs and wants. She still has a long journey to get to telling us more, but she is on the path there and had she not received this support, I don’t even want to imagine where we would be today.

It is hard to condense Ls ABA journey into this blog, if you find that you want to know more about L and ABA please do reach out. I am an advocate for anything that helps children to engage, learn and communicate better, and I even use ABA methods with my two other neurotypical children. I do believe that all children benefit from using their motivators and positive reinforcement.