For the past few days I have been
chatting on Twitter about ABA. I had heard about the controversy about ABA and
I wanted to understand why so many Autistic adults are against ABA so I joined
in on a few twitter conversation. I wish I could say that I have a better
understanding of their views on ABA but I am left with more questions and feel
that many parents may never be able to fully understand their side. The reason
for this is that we all have a different perspective! Plus throughout the
conversation, it was clear that there are different aspects of ABA as one
person's experience differs from another. There were times, I was told I am
abusing or damaging my sons by doing ABA, times when I was told what I did was
not ABA and it was said that what I did was ABA leaning. So which is it?? I am
not sure but I am sure that I have not abused or damaged my sons! What I do
know, is that a person's perspective of ABA varies based on their experiences,
whether it was true ABA or not, what information they read about ABA & how
they interpreted what they read, is the person NT or on the Spectrum, did they
have a good therapist or a bad therapist, was the person speech &
developmentally delayed or hit all their milestones, were they dx'd at an early
age or found out as an adult that they were on the Spectrum and most of all -
where are they on the Spectrum. As a parent to 3 Autistic sons & been in
many discussions with Autistic adults, I am use to Autistic adults insisting
that my views and opinions don't matter because I do not have Autism. While I
feel that all views & opinions should be listened to, I am often told that
what I have to say is irrelevant.
One problem with trying to chat
on twitter is that you are only allowed so many characters in a tweet so a
person tries to pack in a lot of information in as few tweets as possible so
sometimes things are left out or not fully understood by the reader. Or if
there are a lot of continuous tweets or a thread with hundreds of tweets, a
reader may miss one or more and judge without all the information. This morning
I woke up to 56 notifications on twitter and have had about another 50 since
then. Many are comments about a portion of a tweet thread judging me without
reading ALL the tweets where I may have explained in more detail. One thing I
have learned over the years is that you need to know an Autistic person's
experience & how they are doing now as an adult to know whether they are
giving you good advice or not as I explained in my blog Autism Advice. So I asked
questions trying to get background to understand their perspective. Questions
like - What is an example of ABA you had? Have you sat in on a recent ABA
therapy session? One person explained that here Mother would yell & scream
at her to make her eat food she did not like. This is not ABA, it is abuse!
With that explanation, how can I believe that this person truly understand what
ABA is when she/he speaks out against ABA? Others didn't answer that question.
No one had been in a recent ABA session but have read about. That leaves me to
the question of - Did you read information from both the pro and the against
side? I didn't ask but the answer does matter because if you are only reading one
side, your viewpoint is skewed.
I was asked - Can you give ONE example of something that is unique to ABA which does
not encompass one of the things autistic people complain about? Something that
other autism therapies don’t use? My Answer - Ok, meltdowns. I always had a Sensory Bags of activities & items
with me. If we were in a store grocery shopping & I sensed a
meltdown, I would redirect them to another activity. If they chose not to
do that activity, I gave them a time out. While it sounds like a
punishment it actually gave them a break from overstimulation and gave them the
time to work through things. They knew I was there for them the whole time.
When they were ready, we talked about how I offered them an activity to
help. Over time they learned to take the redirection I Offered. Once they
learned how to identify a trigger, they started redirecting
themselves. They have always had clear rules, clear consequences
along with a lot of love and support! That person's response -That sounds great! It’s also not ABA. ABA
teaches that removing the child from the situation is rewarding the negative
behavior and instead the child should be kept in the overstimulated environment
until they are passive. So I clarified - I didn't
remove them, sorry I should have clarified that a bit more. Their
time out was in the store, right where they started the meltdown.
Removing a child from a store for a meltdown, only teaches a child that
they can get out of shopping by having a meltdown. That person's response was - Ah. Then that
is more ABA-leaning. Let me explain why autistic people don’t like that line of
thinking - we can’t help having meltdowns. They are involuntary and feel awful.
Being asked to go into a grocery store is like putting your hand in ice water. My response - Grocery shopping was hard for them at first but
they needed to learn how to do it! They were allowed to show distress & cry
if needed but they also learned that meltdowns are unacceptable behavior! Which
is why I taught them to identify their trigger & taught them techniques .
to help them when they felt a trigger. Whether it was deep breathing,
fidgets or as they got older, removing themselves from the situation. Now
they love shopping!
Now I had done it, I said meltdowns were unacceptable behavior! How dare I say something is unacceptable, even though it is true! Now I should have gone into more of an explanation but it would have been a waste of typing because I wouldn't have been heard. So I will explain a bit more here and then I will address some of the responses I got. Meltdowns are unacceptable behavior, understandable behavior and maybe even needed but that doesn't change the fact that having a meltdown in the middle of a store is unacceptable behavior. At the age of 5 it may seem harmless but at 15, that same meltdown may hurt someone and at 25 that meltdown will get you fired from a job, so yes a meltdown is unacceptable behavior. Which is why I helped my sons learn to identify their triggers, how to use fidget or other sensory items and helped them learn techniques to help them work the pain, stress or overstimulation without having a meltdown. Does it always work, no and that is OK but it is important for them to always try. To say that a person is allowed to have a meltdown whenever needed is wrong and telling that to parents only sets up a child to become an adult that will lose their jobs and/or get arrested for assault. I am setting my sons up for success and yes that means that they need to know that if they are in a board meeting with their company's CEO's that they cannot have a meltdown.
Here are some comments that I woke up to, I have not replied to them on twitter but will respond to a few here and post this blog to the thread.
“What a nasty piece of work you are! If you had the first idea of how we feel under this type of pressure you would realize why this is torture. We have online grocery shopping, why would anyone have to go into a supermarket?” The whole, we can shop online is a false safety net! Sorry but if there was a blizzard and you lost power or internet for 2 weeks, how would you order online? You can't, you would have to go to the store. Now for a person that didn't learn techniques of handling the triggers of shopping, they would have a harder time having to go into a store or they would just not do it. Living like that is not fully living, it is limited living and I want my sons to have a full life!
“Meltdowns are not unacceptable behaviour though. Meltdowns are expressions of extreme distress. Basically what you described is a toughening-up process whereby we learn to ignore our feelings and tough it out. I totally understand why it seems necessary and great, but...” Teaching a child techniques to help them work though their stress & feeling is not ignoring their feelings!
“Meltdowns are not behaviours, they are involuntary responses to extreme distress. You are teaching them that you are not a safe space and they must internalize their pain whilst w/ you. Flee, fight, freeze. What do your children do now? My heart hurts for your children and you.” I just showed this to my 13yo, his response - My Mom is my safe space, she is the one I call when I am struggling with overstimulation as talking to her and her reminding me to take a deep breath helps me regulate until I can get to a safe place.
I could keep going but this is a long blog and I need to get back to work. Since I have more questions, I will continue to do more research on both sides of ABA because I do feel that understanding both sides gives parents a better viewpoint to help our children. The problem comes when parents are dismissed because we don't have Autism! My advice to Autistic adults - ask us more questions as to how we came to our viewpoints! If anyone had asked me that, I would have explained that I understand Sensory Issues because medical conditions left me with many Sensory Issues. I understand Anxiety, OCD, depression and PTSD as I am a survivor of every form of abuse, I also had a Mother that always tried to conform me to the daughter she wanted by not loving me for who I am. My life has many limits because of my Anxiety, like I cannot attend a school function without micro-dose of Medicinal Cannabis. I didn't want my sons life to be limited like mine so I helped them find techniques that work for them. I am baffled at how that is wrong or how so many won't believe that these techniques are not abusive and that they will not suffer from PTSD. So while it is true that I do not have Autism, I am far from being a typical person! Also ask parents what level of Autism their child has because it matters. If you are an adult with Asperger's and all your experiences are with others that have Asperger's then you cannot understand what a parent of a child with no speech & developmental delays are facing! Our fear that if our child stays nonverbal & cannot take care of themselves, that when we die, we have to rely on strangers to care for our children and we all know that is not always safe for them. You are on twitter so you either you didn't have delays or your parents helped you get to where you are today and we are doing our best to get our children there too! Most of all, stop telling us that we have damaged our children! Unless you were to witness our children in person, you cannot make that assessment!! You are taking your experience and demanding that our children will have the same affects you did when you don't know if that is the case. Because it seems, ABA is different for everyone just as a dx of Autism is different in Autistics!
We raised our sons to Embrace their Autism, to own it and to be open about it. Yes we are strict, yes we have rules & consequences but we balance it all with a lot of love & support! Now that he boys are older and doing well, I spend my days helping other families understand the Sensory part of Autism, standing up for all children, telling parents to stop looking at the disability and find the abilities in their children and most of all, trying to get parents to believe in their children!
I will continue to support what I know ABA to be because it is working to help child! With that said, I do not support abuse, withholding love or ignoring a child for any reason and have to say, I have never seen or heard of those techniques in ABA. My feelings about ABA are not set in stone, with my research if I find that the majority of ABA is abusive then I will change my stance. But I have a feeling that what was once ABA is not what ABA is today. Maybe with the modification of ABA over the years and the changes that were made, they should have changed the name so there would not be so much confusion!
Side note - While I will post this blog to the original twitter threads I chatted on, but I will not be commenting about this blog on those threads, I will only comment on the blog thread form my page!
PS - Sorry about the highlighted and color changes throughout the blog, I have no idea how to fix that!
Now I had done it, I said meltdowns were unacceptable behavior! How dare I say something is unacceptable, even though it is true! Now I should have gone into more of an explanation but it would have been a waste of typing because I wouldn't have been heard. So I will explain a bit more here and then I will address some of the responses I got. Meltdowns are unacceptable behavior, understandable behavior and maybe even needed but that doesn't change the fact that having a meltdown in the middle of a store is unacceptable behavior. At the age of 5 it may seem harmless but at 15, that same meltdown may hurt someone and at 25 that meltdown will get you fired from a job, so yes a meltdown is unacceptable behavior. Which is why I helped my sons learn to identify their triggers, how to use fidget or other sensory items and helped them learn techniques to help them work the pain, stress or overstimulation without having a meltdown. Does it always work, no and that is OK but it is important for them to always try. To say that a person is allowed to have a meltdown whenever needed is wrong and telling that to parents only sets up a child to become an adult that will lose their jobs and/or get arrested for assault. I am setting my sons up for success and yes that means that they need to know that if they are in a board meeting with their company's CEO's that they cannot have a meltdown.
Here are some comments that I woke up to, I have not replied to them on twitter but will respond to a few here and post this blog to the thread.
“What a nasty piece of work you are! If you had the first idea of how we feel under this type of pressure you would realize why this is torture. We have online grocery shopping, why would anyone have to go into a supermarket?” The whole, we can shop online is a false safety net! Sorry but if there was a blizzard and you lost power or internet for 2 weeks, how would you order online? You can't, you would have to go to the store. Now for a person that didn't learn techniques of handling the triggers of shopping, they would have a harder time having to go into a store or they would just not do it. Living like that is not fully living, it is limited living and I want my sons to have a full life!
“Meltdowns are not unacceptable behaviour though. Meltdowns are expressions of extreme distress. Basically what you described is a toughening-up process whereby we learn to ignore our feelings and tough it out. I totally understand why it seems necessary and great, but...” Teaching a child techniques to help them work though their stress & feeling is not ignoring their feelings!
“Meltdowns are not behaviours, they are involuntary responses to extreme distress. You are teaching them that you are not a safe space and they must internalize their pain whilst w/ you. Flee, fight, freeze. What do your children do now? My heart hurts for your children and you.” I just showed this to my 13yo, his response - My Mom is my safe space, she is the one I call when I am struggling with overstimulation as talking to her and her reminding me to take a deep breath helps me regulate until I can get to a safe place.
I could keep going but this is a long blog and I need to get back to work. Since I have more questions, I will continue to do more research on both sides of ABA because I do feel that understanding both sides gives parents a better viewpoint to help our children. The problem comes when parents are dismissed because we don't have Autism! My advice to Autistic adults - ask us more questions as to how we came to our viewpoints! If anyone had asked me that, I would have explained that I understand Sensory Issues because medical conditions left me with many Sensory Issues. I understand Anxiety, OCD, depression and PTSD as I am a survivor of every form of abuse, I also had a Mother that always tried to conform me to the daughter she wanted by not loving me for who I am. My life has many limits because of my Anxiety, like I cannot attend a school function without micro-dose of Medicinal Cannabis. I didn't want my sons life to be limited like mine so I helped them find techniques that work for them. I am baffled at how that is wrong or how so many won't believe that these techniques are not abusive and that they will not suffer from PTSD. So while it is true that I do not have Autism, I am far from being a typical person! Also ask parents what level of Autism their child has because it matters. If you are an adult with Asperger's and all your experiences are with others that have Asperger's then you cannot understand what a parent of a child with no speech & developmental delays are facing! Our fear that if our child stays nonverbal & cannot take care of themselves, that when we die, we have to rely on strangers to care for our children and we all know that is not always safe for them. You are on twitter so you either you didn't have delays or your parents helped you get to where you are today and we are doing our best to get our children there too! Most of all, stop telling us that we have damaged our children! Unless you were to witness our children in person, you cannot make that assessment!! You are taking your experience and demanding that our children will have the same affects you did when you don't know if that is the case. Because it seems, ABA is different for everyone just as a dx of Autism is different in Autistics!
We raised our sons to Embrace their Autism, to own it and to be open about it. Yes we are strict, yes we have rules & consequences but we balance it all with a lot of love & support! Now that he boys are older and doing well, I spend my days helping other families understand the Sensory part of Autism, standing up for all children, telling parents to stop looking at the disability and find the abilities in their children and most of all, trying to get parents to believe in their children!
I will continue to support what I know ABA to be because it is working to help child! With that said, I do not support abuse, withholding love or ignoring a child for any reason and have to say, I have never seen or heard of those techniques in ABA. My feelings about ABA are not set in stone, with my research if I find that the majority of ABA is abusive then I will change my stance. But I have a feeling that what was once ABA is not what ABA is today. Maybe with the modification of ABA over the years and the changes that were made, they should have changed the name so there would not be so much confusion!
Side note - While I will post this blog to the original twitter threads I chatted on, but I will not be commenting about this blog on those threads, I will only comment on the blog thread form my page!
PS - Sorry about the highlighted and color changes throughout the blog, I have no idea how to fix that!
