Saturday, 16 February 2019

My Experience with ABA

When my child was diagnosed autistic at four and half years old, the doctors recommended going on the IBI (intensive ABA) waitlist and calling Kerry’s Place Autism Services.  I was diagnosed several months later.

We knew someone who was training in ABA and hired her for a couple of hours per week.  We were taught to force M to do things they didn’t want to do, even if we had to physically make them.  For the most part we did not do that.  There was the occasional time where we would pick M up and put them in the car if we were supposed to be going somewhere.   Or in moment of weakness, I would try to make M sit in a chair.  It didn’t go well and should not have been done.  We were told that M was attention seeking when they were crying, climbing on us, and generally melting down.  I did not fully believe what we were told but I was brought up being told to do as I was told so I listen to those who are authority figures.  We were told to take away all of M’s special toys so that they could be used later as rewards.  This backfired on the therapist because M just did nothing and sat on the couch depressed and didn’t play with anything else.  We gave the toys back.  It was not fair to take them away like that. 
We were told to ignore the ‘attention seeking’ which made the meltdowns worse.  We didn’t know at the time that they were happening for a reason even if we didn’t know what it was.  

During our four year wait to receive IBI, I learned some more about autism and must have found a few bits written by autistic people online (there was very little back then).  I learned why I struggle with eye contact- in my case probably sensory.  We never forced M to make eye contact and when they started ABA, we made sure it was not done.  We received direct funding, so we hired our own team and M did 1.5 years (20 hours a week) of IBI.  M was not forced to sit still with their hands on the table but there were many programs, including compliance.
I was taking my Autism and Behavioural Science Graduate Certificate on line through Seneca.  I figured it would be a good way to learn about autism and support my child.  It was a course not only for ABA, but also social stories and visuals. In my placement and in various other learning situations I learned hand over hand- which is horrible for sensory issues and for making the individual feel powerless.  I learned negative reinforcement-if a child in the centre threw cards etc. on the floor, the command to pick them up was repeated over and over, along with physical prompts (while the child was melting down) until the child did what was asked.  I also observed certain children carrying a bucket of ice.  I never asked staff what it was for but assumed it would be used for hitting and the like.  Lemon juice in the mouth was for spitting etc.   So yes, punishments still happen in ABA/IBI.  

Using the negative reinforcement of the repeated command on my child made their anxiety so much worse and meltdowns more violent, as did the extinction (planned ignoring).

Candy reinforcers (rewards) for doing programs is bad especially in families where food issues run through generations.   Our young adult has been ‘addicted’ to candy since the IBI and didn’t really eat it before then.  They were also used to getting a reward for doing things and this took many years to cut out after IBI.
Through time, I became more aware of other autistics especially after I got Facebook and found community.  I learned from them better ways than what we were told from ‘professionals’.  I learned to not ignore meltdowns/tantrums even though every parent is told to do that.  If they are even just having a tantrum, they’re in need of support, not necessarily to get what they want but to be heard, to explain why they can’t have it, also to understand their big feelings.
My son was aggressive and as they got older, it got scary but I followed what other autistics suggested and when my son melted down, I would give short replies- “I understand you want …..”, ” yes, I am listening” etc.  Instead of staying behind a closed door, I blocked blows by turning my body.  It took a while but we no longer have those incidents.  

It always felt wrong to ignore when my son was very troubled but we followed the so called experts.  Now we follow the true experts.  

Verbal behavior tried to change the way my child communicated.  We would all know that my son wanted the juice on the table but if they said they were thirsty, the senior therapist said not to give it to them until it was directly asked for (with prompting at first).  Does it really matter how the point is gotten across as long as it has been?  There were lots of programs for that and for asking questions.  M did not usually ask, ‘why’, but got the information in other ways if they really wanted it.  Why is faster but does the method matter if you get what you need?

After getting my Graduate certificate, I worked for M’s therapist with a young 2/3 year old boy.  One program his parents wanted run, was for him to look at them when his name was called.  I had a favourite thing, called his name and started with physical prompts to turn his face to look at me, then gave him the thing.  It is a silly program.  I was taught to do the same thing with my dog.  It is not something that should be done with people.  Talk to him and assume he is listening even if he is not looking at you.
That job lasted a couple of months and I was glad when it was over.  It would have been better to interact with him in his chosen ways.  

Another ABA therapist job that I had was with a young girl.  I told the parents that I am autistic.  A big part of her program was eye contact, which was torture for me and probably for her.  She was funny though.  When I asked for eye contact, she would open her eyes wide, lean forward and look me in the eyes.  It was hard not to laugh.  The whole program was a waste of time.  I was told they couldn’t afford to keep because she was starting on biomedical but I think they actually just didn’t want me after viewing a taped session.   

I never practiced ABA again after those two.  I couldn’t make myself do that to other autistic kids.  I can’t do things like eye contact or in many cases even speak to people, so how can I force a child to do it, especially when it comes at the expense of mental health.  I didn’t have ABA as a child but was brought up similarly.  Being forced to comply has not helped me at all in my life.  It has been a partial cause of my anxiety and dysthymic depression.  I have trouble saying no and have been molested and sexually assaulted.  ABA has been proven to cause PTSD and parents who say their kids ABA doesn’t try to fix them and allows stims (likely only certain ones and at certain times) aren’t doing true ABA and it is just called that to get funding.