ABA Twitter Chat

       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! 

Kennebunk - It is time to speak up!!!

Kennebunk is in the news again!! I have read the news articles, the districts response to the news article and many of the comments on the posts about the article and all I can say is - I am not surprised at all!!!  To the woman these articles are about - I am so sorry for what you went through!!!

Some in town seem very shocked that these events took place, I am not. Why? Because of everything we have been through with our sons is the simple answer. A small part of me says, "don't write this" but the larger part say "Do it because not speaking up is the biggest problem in this town." And what do I have to lose, most of the town doesn't like me already.

May marks 9 years we have lived in Kennebunk. We moved here so our boys would get a better education and because Kennebunk looked like an amazing community. At first is was great but the longer you live here the more you realize it is a Faux Community for transplants (Transplant is what natives call people that move here). Leaving my hometown and state was an easy decision because the schools there were not supporting our sons the way they needed and we had heard great things about the schools here. At first it seemed like I fit in, even made some friends. I joined in on parent/child activities offered through the Rec department, quickly found out that being open about a child's dx of Autism was not something that was done here. OK but the boys need friends so I will play along. Well that didn't last too long!!

Time came for D to speak to his class about his Asperger's, the school did not want that to happen but it did. I lost a friend and one of D's friends with Asperger's stopped talking to him. But his talk helped children understand him and he made some other friends, or what I like to call polite friends. A polite friend is a person that is nice to you while you are at school or a school function but does not want to be around you outside of that setting. On a positive note, school administration saw that his talk helped his peers to understand him, his quirks and that there was more acceptance & understanding by students.

I quickly started to realize that Kennebunk is a community that goes with the flow, keep your head down, don't ask questions and don't point out flaws. I tried to abide by that, I really did but then I saw how D was treated by his basketball teammates in his second year of playing. They bullied by exclusion and I could not get the coach to do anything about it so I talked with the players. The talk went great, his teammates were very receptive, it was a great day (click on 'talk' for the blog). Sadly the next day the email from the coach quickly showed me that he and parents were upset, even stating how unfair it was for the boys to have to go through that and I was no longer wanted to assist in coaching. I was baffled how talking to the team was unfair but excluding D was OK. I asked that I be allowed to let the boys know that I was unable to help because of babysitting issues but was told, I was no longer allowed to talk to the boys again. I did receive two emails from parents stating that they thought the talk was a good life lesson for their sons but at the games I was ignored and got dirty looks!!  I broke the unwritten rules, lost a few more friends. Within a few weeks of me not helping coach, D was excluded on the court again, the team started to lose again because they weren't working as a team and at the end of the season, D said he would no longer play. Within a year or 2 he was bullied out of baseball too. I was vocal about both events but there was no community support!! So we turned him to other interests.

A year after the basketball incident, Karl had asked to go to camp as he wanted to have fun at camp with his friends. As you can read in the blog (click on camp) the town manager didn't allow it. I was vocal again and again no community support. Even had another Autism Mom say "I can understand why the town is doing that."  I was blown away that so many were OK with a 7 year old not being allowed in camp because he needed a little extra supervision. I couldn't even get help from organizations with lawyers because they would be up against Kennebunk so it wasn't winnable and I couldn't afford a lawyer so he couldn't go. The school refused extended school year because Karl was doing great but all agreed that camp was needed to help him continue to build on social skills and to be with his friends.

This blog could go on and on if I were to list all the times I have spoken up for what is right in Kennebunk but I am not in the mood to type it all, plus many of you already know which is why I am called 'a pain in the ass' and God only knows what else. But here is the thing - I will not stop being a pain in the ass as long as my sons and other children need me to speak up!!! Speaking up has brought much needed change to this community and it has been for the better. My social media campaign to bring awareness to the serious issue of drivers not stopping for buses lead to buses getting camera's. While now and then a car may not stop, the number of passing cars has be reduced and at the start of each school year there are signs placed reminding drivers that school is starting and to stop for buses. So you may have all hated that I was recording cars breaking the law, posting the videos, posting about how an officer gave a warning to a man that confessed to breaking 2 laws, 1) he was on the phone distracted and 2) that he did not stop for the bus, but I bet you like the fact that buses got cameras.

Autism awareness and openness is one thing we have brought to the Kennebunks, While I know many still feel 'Autism' is not  word that is to be spoken or the Awareness Ribbon to be seen, there a some families that feel they no longer need to hide their child's dx and most importantly many children with Autism know that are not alone! Through the years I have gotten a couple of messages thanking me for the work we have done and how it has helped their family and that is all I need to know to assure me that speaking up is the right thing to do. Don't get me wrong, speaking up is not all sunshine and roses, it is very lonely, as I said, I have lost friends through the years because of it. Hell I have 2 friends in town that I trust and a quite a few 'Polite Friends,' ones that say they are my friend, are facebook friends with me but don't want to hang out or associate with me in the real world. No worries, I am use to it, my own mom and sisters didn't want me around either. My childhood is not something I would wish on my worst enemy. I was sick from birth, spent most of my life until 3.5yo in the hospital, even spent 2 months in a plastic bubble, I am a survivor of every form of abuse, I even know what it is like to not be allowed to join groups and such because I was too sick, and through it all my Dad had my back, at least for what he knew about. With his heart condition, as I got older I feared he would have a heart attack from the stress of knowing. Through it all I became a very unique person with a very different perspective on life. A perspective that many do not understand at first but over time, when what I have said comes true, they realize that I had an insight to where things were headed. Empaths tend to do that. As a teenager, I begged God to let me know why he allowed so much to happen to me. Was I that horrible as person? Was I suppose to die like the Doctors thought? Is this punishment for living? Then I had my daughter, with raising her I started to get some clarity!! Years later when we found out that D had Asperger's many were surprised that I was not upset. To me there was no reason to be upset, I just wanted to know how I could help him. I remember going to my Dad's grave and talking with him about D and his dx and how Karl (in my belly at the time) may have it too. I looked up at the sky and said "I get it God, I now know why." While I wish there was an easier way to learn the lessons he needed me to learn, I forgave him and accepted my role in raising children with Autism. I knew that I would need to be their voice as I taught them how to be their own voice.

Moving to Kennebunk, a place where people go with the flow, ignore problems, exclude those that are different, bully what they don't understand, call new neighbors transplants and a place where it is wrong to ask questions did not change my mission, I have and will continue to speak up for what is right!!!

Now Kennebunk my question to you is - Has this last event made you realize that there are real problems in this community and are you ready to speak up?? I for one would like the bullying to stop, the exclusion to stop and for our town to be a real community that supports one another!!