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.
Excellent article, Mandy. This should be read far and wide.
ReplyDeleteThank you.
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