What Do I Think of ABA?| An Autistic Adult (and Parent) Answers
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- Опубликовано: 16 сен 2024
- I have been asked whether or not our children are in ABA many times and today I finally answer the question and I talk about our experience with ABA and how my view has changed over time. I don't go deep into what ABA is in this video. There are a lot of good videos that do that (Stephanie Bethany's recent videos on the topic come to mind). This is definitely very personal experience based and about what we've done, changes we're making and what we're doing moving forward.
Welcome to Someday I'll Sleep Autism Vlogs! We talk a lot about autism around here because as a family with four kids and one mom on the autism spectrum we believe that autism acceptance is extremely important. We also post family vlogs daily, about our lives. You'll get glimpses of what's going on at the moment in our lives, usually in a little town in Michigan, or in the city that Paul works in and where we have about a million therapy sessions each week.
We are a family of 7, with a Mom named Cammie and a Dad named Paul. Sadie is 11, Maggie is 9, Patrick is 7, James is 5, and Tessie is now 3!
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I think one of the issues is how, even subconsciously, people DO try to make us not autistic, even if they don't realise it and deny it. I see it as an adult, at work, with my boss, mostly. I'm almost always getting the message that I need to change, I need to adapt, I need to adjust "just because". Because "it's like that". Of course I know in some aspects I do need to adapt but I hate this idea that being a minority means you need to do all the work, no matter how inane the behaviour expected is. Many things are just cultural, not necessary, yet I'm expected to waste precious energy on it just because it will make people feel like everything is normal. I swear, NTs cannot leave their tiny comfort zones, yet we're the ones considered dysfunctional. I've been told before that I make people uncomfortable because I behave "unexpectedly". Do they ever stop and think how I feel being a stranger amongst them? It's like being a foreign person visiting a country where people would expect you to "just learn the language".
RedTarka thank you! I have an autistic son and your comment has made me see things from a different perspective. I always wonder what my son will be like as an adult.
Yeah exactly. It became super obvious during the pandemic. The credit union near here had just built a new branch building and for several months no one could go inside at all because the CU had intentionally made it impossible for people to be 6' away from each other. Like it was designed for NT socializing. They had to put up excessive signs and dots because they made it so confusing to figure out where you're supposed to go (even when there isn't a pandemic). My work put up visuals to show traffic flow and tell kids the expectations for like hand washing and distancing and all that, where to wait to pick up their lunch, etc. But before that when we'd asked if we could put tape on the ground to show kids in my special ed class where to stand, they said "no it will ruin the flooring." They react like that to almost everything. Like this all could (and should) have been set up to make it accessible to everyone years ago. The traffic flow, place to line up and expectations should be displayed/labeled everywhere, not just communicated implicitly so we don't pick it up. Those kinds of accommodations help all kinds of people anyway, not just autistics. It's cultural like you said. If someone moves here from a different country there's a huge potential for conflict if they walk into the middle of a queue because they misunderstood something about local etiquette. Etc. People get mad at me all the time because they think I'm being rude on purpose
I can understand your feelings, but the world cannot conform to a minority with disabilities who have needs as different as the people who have them. That's just not the way it is.
@@miffedcuttlefish6139 how is it a disability when autistics have strengths? And I think the things autistics get a hard time for are not things that are disabilities but things that make them "weird", like hand movements and gestures that are weird- why is that wrong? The ability to hyper focus, research, recall information makes them valuable in careers like IT. If we all sit around chatting like NTs want to, nothing new would get done!
@@miffedcuttlefish6139 you mean lying is normal? What do you mean by normal? They are called neurotypical because they are the majority, not because it is "normal" or "correct".
Autistic people have no issues communicating with others as long as the communication does not involve deception. If you are straightforward and mean what you say, I have no problem understanding you. NTs dont like to admit that they are far more deceptive than they think they are.
If autistic communication is broken, then why can autistics communicate with each other with no issues?- There are studies that prove this. It is only when NTs are indirect that they get confused. There is nothing wrong with autistic communication. NTs are so full of themselves that they cant even imagine what it must be to be someone different from them. And if you really wanted to help, please teach your kids not to lie and deceive.
Hopefully your doctors will see how much Maggie has improved since stopping and see you made the right decision. The weight gain alone is huge.
I really hope so. My dad was talking about how much more relaxed her facial expressions look too and everyone has noticed how much calmer she seems in general. I'm glad we've had the chance to see it over this time at home.
I know this was not an easy video to make, but it is a important one and extremely courageous. Your voice as an autistic woman, and as a parent of autistic children, is incredibly valuable. I hope more and more autistic parents will come forward and share their stories and experiences.
I can understand why this would be a hard video to make. I think anytime you exist in any sort of intersection between two worlds
autistic + parent
autistic + minority (this is my story)
autistic + additional exceptionality
finding your footing and learning to listen to your own, authentic internal voice, can be a difficult process. You’re a wonderful mom. My favorite part of the video, is when you said you’re learning to trust your intuition :) I love that. I’m trying to do that, too, everyday.
Signed, Fellow Introvert :D
I loved seeing that you’re trusting your own intuition. Thank you for making this video. It gives me courage in my own experiences
I admire you so much, I do not know with what is on your plate, you still can smile , you are a great mom, you should be so proud of your self.
Thank you so much Yvonne!
Hugs! My son Darrion has autism. We chose not to do ABA with Darrion. Eventually, we ended up homeschooling too! We went against every experts too! It's so hard but then Darrions made leaps and bounds forward. It will be okay for you too! We do Son-rise program for Darrion's homeschool "therapy" he loves it!!! If you have questions please feel free to ask. Again big hugs momma! You're doing the best job ever because you love them most!!!!
Do I need to get some kind of training to start homeschooling my son? He's 16 months, newly diagnosed
@@mariahassan4750 The Autism Treatment center of America offers the Son-rise Program in person (Sheffield MA) or online. That's what we chose. We could do it in our time and there's a library they update regularly with ideas. Any questions you might have can be answered by the person who checks in with how it's going for you. It's so great to get in on this when your child is so young!! I didn't find this until Darrion was nine. I guarantee it'll change tons for you. It did our family! Hugs
Hi, I’m autistic too - I was diagnosed late. I have 4 daughters and two have a diagnosis. My oldest daughter did ABA. I could almost say what you have word for word. My daughter is 20 now and she still has very high care needs. The reason I felt like we had to do ABA was that she was so hard to reach and I wanted to help her. But now, looking back I certainly do regret some aspects of it. I live in an area of the UK where there is almost no provision for autistic kids. I have to accept that maybe aspects of the program stressed her. I’ve learned this too by realising how my own mental health was severely affected by people getting angry that I don’t behave NT. Hindsight is a wonderful thing but I do cringe when I see parents trying to force interaction with their autistic child.
We chose not to do aba with our son but had very similar experiences with public school. I took my son crying and begging and melting down every single morning from sept-Jan and finally had that AHA moment. He wasn’t adjusting, it wasn’t getting easier, he was extremely stressed, and his social anxiety was through the roof! Within a month of taking him out, he was back to his very happy, playful self. Although I do think he has some ptsd from the time spent being forced to conform at school (even though it was preK).
As parents, we can only do what we feel is right in that moment. Don’t beat yourself up over past choices. Needs and behaviors will change and we as moms will adapt and advocate.
Mom, you know best! You are courageous, intentional, insightful, creative, committed, kind, forgiving, and of course beautiful in every way! You are truly one of the best moms I've ever been introduced to. You've made the best decision, and the girls will thrive HAPPILY! All the best
Every child is different and you need to do what you feel is best for your kids...i am very proud of you
Thank you Hope.
The really misleading thing is that we as humans can like and want to be around people who are harming us without any of us realizing it. And people can harm others even with the best intentions.
I'm autistic and I have done ABA, as an educator. I can't even see all the places it's affected how I interact with people, especially kids and animals. Like I'm having to deprogram myself, it's insidious. I wasn't raised to treat people like that but I WAS raised to think all my natural instincts (like the way I treat kids) are wrong. So I changed everything about how I interacted with kids. I was so glad to have a way to prevent "challenging behavior" without seeming to harm the relationships. It seemed to work and it mostly felt good for everyone in that setting. The problem is often the longer-term stuff, and the things that happen outside of that setting.
I’m late to this. My middle son is autistic and I never wanted to send him to school. He’s been homeschooled. I just knew he would be overwhelmed at school, plus he doesn’t like to be away from me.
My gut said something about ABA therapy wasn’t right. Then I started watching testimonies on adult autistics who talked about how much it negatively impacted them.
I’ve realized recently that I’m autistic. I am 41 and have been masking my whole life.
That solidifies my anti aba stance even more.
Super courageous video.
I acknowledge you for sharing your fears of making a mistake and the struggle of judging yourself. It was very intimate and thank you for letting us join you.
I'm a student in occupational therapy in France and I watch your videos for more than a year now, I can tell you that you seem to be an amazing mum ! It's totally normal to have doubts and to follow the doctor's advices, that shows that you are deeply concerned a'd that you only want the best for your kids.
Here in France ABA is slowly growing and i feel concerned about that
I think that it's important to show to people that other therapies (like OT, speech therapy...) exists and help your childen to progress and at the same time let the children express himself and who he trully is.
That simply isn’t true. There may be some bad OT’s out there but in general most are OT’s aim for more natural methods. They are trying to build skills not convert the child into a neurotypical child. Unlike ABA. You really should listen to while autistic adults are saying rapscallion.
Ooof.
I am so glad that you took the girls put of ABA and saw that they weren't happy.( In fact I talked to a lot of Autistic people that went through it and long story short it didn't do anything for them in the long run)
And Ali the fact that majority of Autistic people are against ABA and you definitely see that makes me happy
You are the expert on your children. No one knows more than you! Trust yourself.
You are so brave and a great Mom. It’s very difficult to follow your own intuition as a Mom when it seems like everyone is pushing ABA. The same thing happened to my family, and I also did not think ABA was a good fit for my son and took him out of school at age 3. The school even came to my house to pressure me to bring him back. But I followed my heart and he went back to school when he was ready, a program without ABA, when he was 5, and he was mainstreamed at age 8. ABA is not the only way. Thank you for sharing your story.
Congratulations on your long journey, and thank you for your helpful info.
Thankyou for sharing your perspective on this sometimes controversial subject. Blessings to you and your beautiful family
Thank you for sharing your thoughts and conflicts on this subject and your child's brave response.
We only stayed in ABA for a few months, but this echos so much of my experience. So grateful you’re sharing this. ❤️
From the internal tugging of weighing whether to take a break & lose your spot, to the table work & repetition being too stressful, to the stress of having people in your home so often. I felt all of that. For me I think what gave me the boost sooner than later was just happening upon a community that shared a lot about ABA experiences, and I just devoured it. Before that, it felt like another way didn’t exist, that I was alone and strange in my feelings. I kept thinking, this can’t be the only way? But all the professionals make you feel like it is, and that really tugs on your heart. I have also suspected myself & my older daughter may be autistic, so I feel you on that too (I hadn’t been on your channel in awhile so I missed a lot). ❤️
My son goes to ABA and I've seen girls there
Girls seem to react different then boys so my son hasn't acted any different and loves ABA and school but if my kid gets thrown off like ur 2 did I would take him out too. my son is always wanting his aba worker. Nothing has changed about him so far. I tell them.not to surpress his stems. They love his stims as.much as I do.
I am an Occupational Therapist
and knowing sensory issues helps however targeting production of desired behaviors such as holding a cube/ block rather than throwing it leading up to using a fork to self feed is a very positive result that I get by performing hand over hand techniques that briefly forces the child (Literally like 4 seconds of hand over hand guidance followed by praise and reward) to do something he or she would not do on his or her own ( for months years or ever) but maybe rather only self stimulate or only do what they know to do such as endlessly line up toys then scramble them and throw them so I enter their play and expand it but make it fun and safe.
Thanks JP
Sounds like something had to change with how things were going. Good Luck!
All we can do is what we think is best for our kids. We try things, sometimes they work, maybe for a long time. Maybe they just ran their course with ABA. And that's fine. It's hard work being in therapy for years. We all need a break from time to time! Just have to find what helps them thrive! Thanks for the video! Love your channel.
I appreciate this so much. ♥️
Autism isn’t treated in the U.k Few people have heard of it. It’s an American concept to use it as treatment for autism when there is no treatment only strategies. Companies are making money out of it in the USA.
I had a few years of OT from the age of 7 and it really helped so much (mine was for dyspraxia not autism) but it was a lovely environment and super child specific. I did do 6 months of volunteering at a playgroup for autistic children that implemented ABA but it was once a week and used in addition to school or other therapies (I live in the UK so not sure if it's different here) . One difference that i've seen from what the group I worked at did in comparison to what you've said is that they had parents come to the group to do the sessions and record the information with the help of volunteers and then they had an overall certified professional as the lead for each group (there were different rooms for different activities and each child had their own timetable so they could memorise their routines and deal with transitions) what it appeared to me was that it was a way of helping the children learn communication and interaction skills as there was a chance for them to learn sign-language (well MAKATON) and play with other children. However, i'm sure that you have had a far more extensive experience and a deeper understanding of ABA being a parent of a child who has partaken in it for so long. I'm not really sure why I am commenting tbh, I guess its just because i've seen a lot of negative press about ABA and i'm just hoping that my decision to volunteer where I did was a good one. What I will say is that, through working with the children I had the pleasure of meeting, I was able to learn so much about the world (yes from 4-6 year olds!) the children I worked with taught me so much about the way I see the world and people and about the way we as humans communicate with one another. It also led me to research more about the autism community that wasn't just the largely inaccurate portrayal we see in today's media. That's how I found your channel and i've got to say I love your videos and subscribed about 5 mins in to your video interviewing Sadie! I loved hearing her views on labels and her opinion on sarcasm (which I have to say is the foundation of British humour so not sure how she'd feel about that 😬😅!). Hope you and your family are well and i'm glad that this lockdown which is a period of uncertainty for many has been able to produce somewhat of a silver lining and sense of sureness for you!! love from England! xx - Francesca
We did this and left after one day I didnt like how they handled Parker. She was terrified when I picked her up.
I hate it when people try to make us not autistic 😭
That is not what ABA is bozo
@@alexanderjimenez1995you are the bozo.
@@alexanderjimenez1995 You might want to educate yourself as to what ABA is instead of insulting people. The aim of ABA is to make autistic people more 'normal' so that they will fit in.
The history of ABA is that it was created by the same person who created gay conversion therapy using the same methodology. So yes very much trying to make us fit in and conform with what is considered 'normal'.
I wonder if it was ABA that was the problem, or was it that the kids were doing ABA for so many hours per week? 35 hours per week of ANY activity - no matter how fun or potentially beneficial - is a lot to ask of a kid. I can see why a child might get stressed.
My take is it is ABA that is the problem. It was created by the same person who created gay conversion therapy using the same methodology. Conversion therapy has been debunked that it just causes people to mask and gives a high percentage of people who have been through it PTSD. Research shows similar results for autistic people going through ABA, the difference is that it is considered 'successful' because it has taught autistic people to blend in more. They acknowledge the high rates of PTSD and say that we just need to modify it to become less harmful because of how 'successful' it is.
Also very telling is that ABA is considered the gold standard treatment because it was the first 'successful' treatment method. It doesn't actually have any gold standard research to back it up.
The biggest reason that ABA is still the preferred treatment option is because of lobbyists, a lot of insurance that is the only therapy that they will cover. Also very telling is that ABA doesn't actually have standards regarding what it is or isn't. Each centre that you go to could be doing something very different ranging from The Judge Rotenberg Center for really bad through to centres that aren't really doing ABA at all but say that they are so that insurance will pay.
Taking away stimming from an autistic person is taking away their regulation altogether. ABA teaches to mask and to behave as the parents/teachers expect. When I was a child my mother would slap me hard across the face if I stimmed; ABA is no better.
I love your video keep making videos please take you 😊😇📷
Did you breast feed you children for up to 6moths
Yup. Twenty one months actually.
You do understand that autism is something you are born with, what way the baby is fed doesn't impact that.
Out of all we had only 2 or 3 were good. I leave then alone, and let them do their thing, but somehow they let my kid color all over his bedroom walks with crayons and chalk. How am I supposed to trust someone to help and teach my kid when they can't even keep him from coloring all over his room? This is the huey town alabama aba. I am not over this. There is not an alternative, and do i really want my kid to be nuerotypical? I just want him to talk, and use the toilet. I am scared for my child, but giving me high fives while looking like a fucking puppy at a dog show is getting old. I'm really thinking fuck aba, but if your kid is bouncing off the walls, and you cna't do shit, it's the only game out there.
👋👋👋💜💕
Aba is abuse
Literally what the video is about.
No Rapscallion. The misinformation comes from people like you and I won’t let you spread it here on my channel. ABA studies that claim to make it evidence based rely on extremely flawed methods. You need to listen to what autistic people are saying. ABA is conversion therapy. It hurts autistic people. If you applied the same standards to Neuro typical children it would absolutely be considered abuse. I have sat and thousands of hours of a ABA appointments. These were both at a university level and private therapy appointments. The girls are the same. To make a autistic child unidentifiable from their peers. There is no world in which that doesn’t lead to trauma. I’m sorry I have to block you I won’t have you spreading misinformation here.
I’m an ABA Therapist, so that’s probably how I got here. Maybe she would benefit from a clinic setting with other children rather than in home.
She was at home for the first two years. She was then in a clinical setting for four more years. We have tried both. The clinical setting seemed more stressful for her, not less, in the end.
Lush Fanatic,
There's autistic adults all over warning parents about the long term as well as short term effects of ABA. Good intentions does not mean you'll have good results, instead of being defensive perhaps you should listen to autistic people, we're telling you what it is about your system that needs to be fixed for the safety of children.
Here's just two suggestions for you, start employing actually trained and qualified people, and stop ignoring the children. To this day, we still have parents telling practitioners to get lost because on the way home from school they found their child jump out in front of a car because he would rather be dead than attend another ABA appointment. It may seem harmless to you, but the experiences and firsthand accounts of autistic people say otherwise.
If you haven't already I would suggest that you look into the history of ABA and how it was started. It is very telling that it was created by the same person who created gay conversion therapy and used the same methodology. Conversion therapy has been debunked that it just teaches people to mask and as a by product there is a high chance that you will also give them PTSD. The research regarding autistic people is pretty similar, the only difference is that for autistic people it is considered 'successful' because the autistic people look/act more 'normal'. So instead of scrapping ABA as well the thought process is that we need to change it so that it isn't as harmful.
Also extremely telling is that it is considered the gold standard treatment because it was the first 'successful' treatment method and the lobbyists are fighting to keep it that way. It doesn't have any gold standard research to back it up.
Hi, I’m autistic too - I was diagnosed late. I have 4 daughters and two have a diagnosis. My oldest daughter did ABA. I could almost say what you have word for word. My daughter is 20 now and she still has very high care needs. The reason I felt like we had to do ABA was that she was so hard to reach and I wanted to help her. But now, looking back I certainly do regret some aspects of it. I live in an area of the UK where there is almost no provision for autistic kids. I have to accept that maybe aspects of the program stressed her. I’ve learned this too by realising how my own mental health was severely affected by people getting angry that I don’t behave NT. Hindsight is a wonderful thing but I do cringe when I see parents trying to force interaction with their autistic child.