Posted October 7, 2014 by unstrangemind in Uncategorized. 98 Comments
Please visit my new blog to read this entry. Thank you!
Posted by Tamara Geekmaker Rice on October 7, 2014 at 7:33 pm
Brilliant, as usual! Will share!
Posted by unstrangemind on October 7, 2014 at 7:34 pm
Posted by Shanti Stumbler on October 7, 2014 at 8:44 pm
So well said. Thank you for your balanced assessment of ABA. My daughter was in an integrated public school which started off okay but as the year went on she was increasingly anxious until the last month of school where she had meltdowns and aggression often saying “Bye-bye school!” The school was defensive and dismissive to my inquiries and I’ll never know why my daughter was so unhappy there, but she was going to have to go on strong medication if things didn’t change. I changed her to an ABA school – 20 hours a week. Now she smiles and giggles as we pull up to the school each day, in a big hurry to take off her seat belt and run inside the school. There is no longer any need for medication. So, I don’t care what you call it. ABA, integration, TEACH, RDI, PECS- whatever! If the person is happy and excited to go to therapy or school it’s a good environment where he/she can learn. If the person is anxious and miserable that’s a bad environment and will not be conductive to learning. The name, or acronym doesn’t change that! I know that many have had bad experiences with ABA and I will not give any therapy or methodology a pass just because of the label it uses. How is the person it is supposed to be helping responding to it? Otherwise nothing matters.
Posted by unstrangemind on October 8, 2014 at 4:44 am
Exactly, Shanti! I love the way you are approaching things. A parent knows instinctively the difference between bad and good therapies when they see their child reacting either with distress or joy. I am so happy that you and your daughter have found a program that is working so well for her! That is the bottom line: the child and her well-being. Thank you for sharing.
Posted by Perla Messina on October 10, 2014 at 12:59 pm
Ι am a bit skeptic of your enthusiasm of ABA dear Shanti Stumbler, because absolutely any school would be better than where your daughter was before she went to the ABA school. Maybe if you had chosen TEACCH, your daughter would have been not just smiling, but also growing psychologically. By giving her ABA she learned how to smile but I am not sure at all if she knows what is true joy of being who her autistic self is. You can make her normal externally, but she will always have an autistic soul! All autistics do, it is who we are. I hope one day she will grow out of ABA, and find who she truly is and the good stuff it includes.
Posted by unstrangemind on October 11, 2014 at 9:20 am
I am choosing to presume competence here. I am presuming that Shanti is in tune with her daughter enough to know the difference between true happiness and someone who has “learned to smile through ABA training.” A loving parent who pays close attention to the effect things have on their child is the most important ally a child will ever have in this world. Shanti is watching her child, listening to her child, and protecting her child. That is and always should be the bottom line in parenting.
Posted by Kelly Green on October 7, 2014 at 9:48 pm
So much beautiful clarity feels wonderful. Thank you for putting this together to help put us together.
Posted by unstrangemind on October 7, 2014 at 10:06 pm
Thank you, Kelly!
Posted by melissaautisticfields on October 7, 2014 at 10:01 pm
Reblogged this on Melissa Fields, Autist and commented:
ABA is forced compliance. I am against it, and i wish and hope fervently that parents will start listening to us Autistics when we tell them our stories, and try to explain to them why things like ABA are wrong. Please don’t silence and censor and ban us. Please listen!!
Posted by unstrangemind on October 7, 2014 at 10:07 pm
Thank you so much, Melissa! *hugs*
Posted by melissaautisticfields on October 8, 2014 at 7:20 am
You’re very welcome!! <3 Hugs <3 back to you!! :) xxoo
Posted by melissaautisticfields on October 10, 2014 at 10:37 pm
You are very welcome, thank you for writing this!! ***Hugs*** <3 <3
Posted by Leslie Fish on October 16, 2014 at 6:27 am
Has anyone here seen the movie “The Madness of King George”? It’s a brilliant condemnation of exactly this kind of abusive Behaviorism.
Posted by unstrangemind on October 16, 2014 at 11:06 pm
I haven’t, but it’s been on my to-watch list for years. Maybe it’s time to move it to the top of the list. Thank you.
Posted by musingsofanaspie on October 8, 2014 at 3:24 am
This just became my go-to rec when anyone asks anything about ABA. Thank you.
Posted by unstrangemind on October 8, 2014 at 4:40 am
Thank you! That’s very high praise.
Posted by Carolyn Ogburn on October 8, 2014 at 4:47 am
Mine too! Thank you.
Posted by unstrangemind on October 8, 2014 at 6:22 am
Posted by Claudine B. van Schoonhoven on October 8, 2014 at 5:33 am
Thank you! I am so relieved to have trusted my instincts. When my son started hating going to therapy and of course doctors and therapists say he must, my husband and I pt our foot down and decided to stop it. Simple as that. My son was happy afterwards and in a better mood all the time! My son had speech delay but if he doesn’t like the therapist, he says so even in little words. Of course, these therapists and others say I spoil my son by giving in to him and I sort of doubted myself but upon reading this and seeing my son now happy and well, I truly believe my husband and I did the right thing. Bless you my dear and again, thank you!! Take care always!
Posted by unstrangemind on October 8, 2014 at 6:25 am
I believe you did the right thing, too! Therapy should make people feel better, not worse. Bad therapy can damage anyone and we Autistics are even more vulnerable to bad therapy because of the way our neurology is wired. The bright side is that good therapy can be amazing for us when we’re fortunate enough to find it. But quite often no therapy at all is better than the damage that bad therapy can do. You have great instincts and your son is so fortunate to have the parents he does!
Posted by Sheila Ticen on October 8, 2014 at 11:26 am
Thank you for taking on this explosive topic. I really appreciate your perspective and your
Posted by Sheila Ticen on October 8, 2014 at 11:38 am
Oops! The touch-pad on my laptop is very sensitive, and I haven’t figured out how to make it stop sending half-written emails whenever my hand brushes against it. Anyway, I did want to finish my thought. Really, thank you very much for bringing up this topic. We had good therapists for my granddaughter, although some were admittedly better than others. The best ones were really good at engaging with her in a playful and fun way. We have also learned that while we do still have concerns for her future, she needs to know that we see and love and respect the person that she is right now, jumping, flapping, squealing, loving and learning and growing in her own way and at her own pace.
I think that your words about the danger and the extreme personal cost of training children that they must always comply with whatever is asked of them are so, SO important. Truly. One of the first things I worked on helping my granddaughter learn to say was “No thanks”. A hug, eye contact or the words “I love you” don’t mean anything at all if the person giving them is being coerced into doing so.
Posted by Julie Pennell on October 8, 2014 at 12:09 pm
Thank you for taking the time (and using spoons) to write such a thoughtful response. On a related note, when people talk about autistics lacking theory of mind, I’ll send them here.
Posted by Restless Hands on October 8, 2014 at 1:37 pm
Thank you. Shaking too hard with emotion to put anything else into words right now, but thank you.
Posted by Restless Hands on October 8, 2014 at 1:39 pm
Reblogged this on Restless Hands and commented:
This post is my new manifesto. I wish every parent, therapist, teacher, doctor, and autism researcher in the world had to read it. It may not be perfect, but it’s pretty darn close.
Posted by Adrianne Connor on October 8, 2014 at 1:41 pm
Absolutely brilliant post. Painful to read but very essential points made.
Posted by TSE on October 8, 2014 at 1:57 pm
Well stated. Good follow up to that sad discussion, which I missed but am greatful for because it lead me here and a further connection to other great bloggers. I concur that ABA, “old school discipline,” putting you in a box only helps mask and conform (somewhat)… Eventually you have to break out or you break down.
Posted by Ben Edwards on October 8, 2014 at 2:44 pm
Great post on ABA, completely balanced and thoughtful. It gives good warning signs of when ABA therapists are not the people you should be seeking for your child as well as the disastrous results that could come from ABA therapists who have their own ulterior motives. It shows how such therapy could led to autistics being taken advantage of as children and adults both physically and mentally in potentially every imaginable.
Posted by Autism Mom on October 8, 2014 at 4:20 pm
Fantastic! Consider this shared! :-)
Posted by Dermott McSorley on October 8, 2014 at 4:38 pm
I’ve only in the past few years realized I’m autistic,so I’m still processing this. I got major grief about stimming as a child. And being autistic I remember this. I still stim ,basically all the time. Other repressions left me suicidal . We cannot be who we aren’t,and the consequences of trying are ghastly.
Posted by ShanEda Lumb Âû on October 8, 2014 at 4:50 pm
Great post. I’m an Aspie mum to two AsperTeens (d15, s18). I am also an Autism activist, advocate, and an Educational Assistant.
I have one point to address regarding terminology and client/parent confusion:
1) ABA= the philosophy of applied behaviour analysis, which can and does guide many approaches to sorting out behavioural issues.
2) IBI= Intensive Behavioural Intervention, which is the 40hours/week, strict, behaviour modification (normalisation) programme of treatment.
Many service providers do practice ABA, but are not *Licensed* to practice IBI. IBI is an ABA based treatment, but ABA is found (and claimed) in many styles/types of treatment programme, only one of which is IBI.
Posted by unstrangemind on October 8, 2014 at 6:32 pm
It’s a valid point. Though it doesn’t negate my main thesis, which is that it doesn’t matter what it’s called: bad therapy is bad. Those of us with therapy-induced PTSD have a tendency to lump everything under the term “ABA” and get easily triggered by that specific acronym. It sort of becomes the flagship for an entire fleet of awful and a shorthand way to refer to a whole basket of trauma. When parents don’t understand the source of the trauma and instead of addressing what is so upsetting to the Autistic adults they’re talking to and instead just keep repeating that there are good kinds of ABA, communication stops happening.
I acknowledge that I’m not a therapist and my knowledge of the details is often shaky. This post surely has some factual errors in it but was primarily written to help parents understand why we Autistic adults can get so upset by the term “ABA” and what it is that we are actually saying or trying to say. It’s such an emotional topic that productive conversation pretty quickly falls apart. I managed to stay calm while writing this blog post, but it took me roughly ten times longer to write it than any other blog post of equal length, the topic is so triggering and emotional for me.
Thanks for the terminology clarification, though. Seriously, thanks. And thanks for reading and commenting.
Posted by Patricia Barlow-Irick on October 12, 2014 at 10:45 am
There is a behaviorologist’s ethical guideline to use the least intrusive effective method of training. It sounds like there is a disconnect with the idea “least intrusive” for some people claiming to be guided by ABA principles. But, now with the autistic voice speaking out, the psychotherapy community has a chance to study the consequences of its actions and modify it’s own behavior. Keep talking about it, Unstrangemind. Your voice will help many.
Posted by unstrangemind on October 8, 2014 at 6:49 pm
(Although this site says it is comprehensive ABA that wants 25-40 hours per week)
It may also be that terminology varies depending on which country one resides in. I don’t know. I’m not an expert on ABA, just someone who went through a lot of childhood trauma and wants to help parents. I saw a lot of parents in the community that imploded asking how they could tell if their child’s therapy was abusive or not, so my aim was to help them have a few guideposts to assist them in deciding whether their child’s therapy is helpful or harmful.
Posted by Patricia Gabe on October 8, 2014 at 8:54 pm
This post is so powerful. I love how you balance the perspective of the autistic individual with the parent – you GET where they are coming from and you use that to bridge to your (and other autistic people’s) experience. The post just draws you in to understand and diffuses defensiveness. May I share a link to this post on my website (autistikids.com – Difficult Issues/ABA page)? Thank you so much for your advocacy!
Posted by unstrangemind on October 8, 2014 at 10:11 pm
Thank you so much, Patricia! That is exactly what I was trying to do: not just talk to parents but really put myself in their position and understand and empathize with them as I worked to help them empathize with us. I am so glad to hear that echoed back from you. Yes, I would be honored if you would share it. Thank you.
Posted by Patricia Gabe on October 9, 2014 at 12:18 pm
It’s on there now – “DIfficult Issues” section/ABA on the http://www.autistikids.com page. If you like the site, feel free to share (but only if you have the time/spoons) :)
Posted by unstrangemind on October 9, 2014 at 3:04 pm
That’s a really good collection of links! thank you for adding mine. I will say/do more later – very tired right now and need to try to nap.
Posted by jess on October 9, 2014 at 4:06 am
Thank you. Just thank you.
Posted by ADAPT Manitoba (@ADAPTManitoba) on October 9, 2014 at 9:03 am
Thank you so much for this – it’s the most fair and respectful response to the ABA problem I have yet seen.
I would add an additional issue with ABA – in working entirely within the realm of memorization and imitation, there is little to no opportunity to develop higher-level thinking skills, such as problem-solving, questioning, creativity, and evaluation. These CAN be explored at every developmental level, but are set aside “until” the child has what are perceived as the basics in place. The child is then missing out on early childhood experiences that are essential to developing interests, strengths, independence, collaboration, and goal-setting.
Posted by unstrangemind on October 9, 2014 at 9:15 am
That is an excellent point and it resonates with me a lot.
Sometimes people will ask me, “if there were a cure, would you take it?” and I have to answer that it doesn’t matter whether I would want it or not, because there are so many crucial experiences that I missed out on throughout my childhood and adolescence. Even if someone were to take away my sensory issues, my fight-or-flight reactions, and so forth, there is no way they could “inject” those missing life experiences into me and so I would still be very different from those around me anyway.
There are some life experiences that are time-linked, that is to say, they happen at a particular age range and just aren’t available in the same way later. Since not having those experiences that most others do have (and having other experiences that most others do not) have shaped who I am today and since, despite my struggles, I feel good with who I am, I am okay for myself with having missed those experiences. But I want the children who are growing up today to have a full range of opportunities and the chance to get as many positive experiences as they can. So a therapeutic approach that causes children to miss out on those experiences is an approach that is in serious need of modification or elimination.
Posted by LinZ on October 9, 2014 at 11:43 am
I have always appreciated your writings and your perspective. This particular topic has stirred a lot of debate and in-fighting within our community, which can make a lot of us hesitant to bring it up in fear of not having our own perspective acknowledged (regardless of what our perspective may be). Reading this, I can tell you invested a lot of thought into how to present this with fairness and balance. Excellent post — thank you for sharing.
Posted by unstrangemind on October 9, 2014 at 3:01 pm
Posted by Tina Andrews (@TMAndrews2006) on October 10, 2014 at 7:03 am
I wish we could make this required reading for every parent, therapist and educator that works with the neurodiverse. Thank you, thank you, thank you for writing it!
Posted by sophiestrains on October 10, 2014 at 7:30 am
Amazing. Will share. Janie’s story made me cry :/
Posted by A Juicer, A Mat, and Three Boys on October 10, 2014 at 7:53 am
I really want to thank you for putting this out there. I am just NOW, after almost a year doing ABA with my nonverbal ASD son who is 3.5 yo, starting to come around to my OWN assertions of whether ABA is the gold standard and the ONLY way to get my child to “normalize.” The way in which you relayed this message about us trying to normalize our children was so beautifully put because it was without judgement.; and without that harsh judgement I was able to see with such clarity and even compassion that, yes, this is why I have tried to stick it out with ABA against my own intuitive thoughts about it being like dog training…. its because I have been trying to normalize my beautiful, sweet, bright, and extraordinary son into what society deems appropriate. You helped me realize this today as I happened upon this blog post. I truly appreciate you sharing these thoughts from your perspective. I have already booked a week with the SonRise program, and will be terminating ABA. Keep sharing your experiences and thoughts with us…. it is invaluable to so many!
Posted by ❄J€§§¡¢aW€§§¡¢a❄™ on October 10, 2014 at 11:52 am
This entry is a gift.
I would really like to re-blog this entry, Sparrow. May I?
Posted by unstrangemind on October 11, 2014 at 9:09 am
Yes, you may. Thank you.
Posted by Emilia Ramey on October 10, 2014 at 12:02 pm
I can’t imagine having a child do anything for 40 hours a week- it seems like that should be the first red flag with ABA.
Posted by Val Bettens on October 10, 2014 at 5:42 pm
I have always been of the opinion that my son with autism has always been treated so differently to others with disabilities… you never see the chld who cannot walk being left in the middle if the school oval wheelchair taken away and the therapists demand that he learns to walk again…. nor do we put the child who can not see there and demand they learn to see again nor the deaf child and demand they learn to hear but the autistic child (who has a social disability) is put there (figurativly speaking) and the demand through ABA is to learn how to become socially acceptable…..I am so glad you have written this as it is so hard as a parent to know what our child is feeling….. when my son was little the therapists would come and demand he paid attention well a fat lot of good that did….. I would explain that if they left the TV on while they did the therapy he would when he got too stressed,look up at the TV have somehting familiar that calmed him and he would learn more….. poor thing taking away any mechanisim that destresses someone is just cruel……. needless to say we did go through a few therapists……..but we also now have a son who can have fun and does enjoy his life after all it is his life and he deseerves to be happy…
Posted by unstrangemind on October 11, 2014 at 9:15 am
Thank you for this, Val. You make done very important and, in my opinion, accurate points. I have said similar things before, myself. People often insist I can do something that is completely outside of my wiring (for example, tolerate sounds that trigger my vestibular hyperacusis) and dismiss my concerns with, “but it’s *only* for two minutes!” I ask them if they expect someone using a wheelchair to get to the porch without a ramp, because “it’s *only* three steps!”
Posted by Nicole Robinson on October 10, 2014 at 7:38 pm
Thank you for sharing your unique perspective on applied behavior analysis. Since this post has reached many individuals with autism, parents, teachers, etc. I felt the need to share my thoughts too. I am a new student to the field of ABA and decided to pursue becoming a Behavior Analyst after working with preschoolers with autism. Applied behavior analysis is an effective, evidence-based approach to intervention for individuals who experience any behavior challenge, from quitting smoking to functionalIy communicating.
I encourage you to read the literature by Baer, Wolf, and Risley (1968) (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1310980/pdf/jaba00083-0089.pdf), some of the original authors to identify ABA as a philosophy of teaching and its social significance. ABA is a way to understand the environmental impact of behaviour, estabilsh a function, and teach an alternative to the problem behavior so that the individual can live their daily life to their fullest potential. For example, an ABA approach to a child hitting their sibling would be to observe the behaviour and the resulting environmental impact. Does mom come running and give the child attention after they hit? If so, after multiple observations and data collection, perhaps an appropriate alternative would be to teach the child a request for attention (e.g., “Mommy, play with me”) to replace the hitting. An effective ABA-based plan would involve the individual, parents, clinician, teacher, etc. so that strategies to modify behavior are effectively implemented and that skills are generalized to a wide variety of settings.
In my humble opinion, it is important to understand ABA interventions and their scientifically proven, research-based results, before we underestimate their effectiveness as a whole based on those who may have provided or received poor service.
Posted by unstrangemind on October 11, 2014 at 9:11 am
I think you pretty much entirely missed my point. I will look at the links you offer, though. Thank you.
Posted by PK on October 11, 2014 at 10:23 am
Ms. Robinson, did you actually read the post? I encourage you to read it again, and to also read the following blog post – http://adiaryofamom.wordpress.com/2014/10/09/extinction-burst/
And these links I also found:
I encourage you to search out the posts of adult autistics, and of parents of children who TODAY who have experienced the abusive applications:
http://emmashopebook.com/2013/11/05/more-on-aba/ (read the comments too)
We understand perfectly well the scientific basis, etc., of ABA. That is not the point. The point is the internal experience of the PERSON, understanding what is going on, and working with the autistic person in a respectful manner. You completely skip over the actual point of the post to jump to the defense of ABA, completely ignoring what the post was about.
It would be wonderful if ABA practitioners would stop “worshiping” at the alter of the method and remember that their clients are thinking, feeling people. Because I don’t see that in your post at all, and I don’t see that in a lot of defensive BCBA’s.
What is it going to take to get you to listen to the people you profess to be trying to help? M&M’s?
Posted by usethebrainsgodgiveyou on October 12, 2014 at 4:57 pm
Science doesn’t much seem to be the friend of the autistic. I prefer to follow my heart when it comes to raising a child. It has worked for thousands of years, before science had “answers”. It’s just anecdotal, but trying to see the world through your child’s eyes is much easier than using science to control behavior.
Posted by usethebrainsgodgiveyou on October 12, 2014 at 5:07 pm
Then again, my son has always been ornery, but gentle. Maybe I am just lucky.
Posted by Irma Zoulane on October 10, 2014 at 8:39 pm
Thank you so much for explaining. Will share and spread the word.
Posted by Tana Jimenez, PT (@TanaJimenezPT) on October 11, 2014 at 8:12 am
Can I ask a question? What is your opinion of ABA for modeling positive behaviors and extinguishing harmful behaviors? I’m a PT and I work at a school for children with special needs (I’m trying not to get too specific because of HIPAA). We have a student who has a visual impairment diagnosis and cognitive delays (no diagnosis of autism,but it is currently being explored), but with underlying behaviors that are not being addressed at home. This student has begun head butting and punching staff as a means of communicating displeasure at certain tasks. He punched me in the face so hard last week that I looked like I had gotten into a scuffle with Mike Tyson. The punching behavior is being reinforced at home because Dad thinks it’s cute. The parents are afraid of their son’s outbursts of frustration and grant him anything he wants to keep him calm and safe. Our team is considering the recommendation of ABA to provide behavioral support at home so that he can use what words he has to communicate rather than banging his head or harming others. Would we be making things worse?
Posted by unstrangemind on October 11, 2014 at 10:47 am
Oh, you ask the easy questions, right? (joking)
First, I can’t really answer because, like I said in my essay, “ABA” can mean lots of different things, depending on who is using that term, so I can’t really say yes or no because when you say the team is considering ABA, I don’t have any way of knowing what that means to the team, and to the ABA provider(s) the team might choose.
I totally agree that your student needs to learn to stop punching people. In my opinion (for whatever that is worth) step one is getting Dad on board with that goal. That might even be the hardest part of helping this boy change the way he relates to the world. No matter how hard you work at school to help the boy find more acceptable ways to communicate with others, it’s not going to help the boy until his father joins the team.
The next step would be figuring out what need is getting served by the head-butting and punching. That’s not easy, either. You need to understand why he does it and a *GOOD* ABA-based program will help with that. As many commenters have said, it’s what good ABA is trying to do — understand the behavior first. But there are other ways to reach that understanding. Rather than saying yes or no to whether the team ought to bring ABA into the picture, I would feel more comfortable saying that the team should work — through any non-abusive means available, regardless of the name of the method — to understand what’s happening. Is it a reaction to fear? Is it something that has historically gotten his message across when no other means of communication can? Is he using it to say “no” or is there an entirely different communication happening? He might even be doing it for a sensory reason — it might just feel really good to hit people. It might really help him focus through anxiety to hit himself.
Until you know why he is doing it, you won’t know what positive behavior to replace it with. You could work and work and work to stop the hitting and head-butting and never succeed if you are mistaken about why it’s happening. Once you understand why he is doing it (and I wish I could tell you, but it’s an individual thing. I could tell you why *I* used to hit and bite and kick people but it would not be *his* reason) you can brainstorm about other things he could do that would get those needs met.
Only when you are able to give him a tool — a thing he can do instead that gets the same set of needs met — will he be ready for you to encourage him to stop the hitting and head butting. Without a replacement way to fill those needs, taking away the aggressive behavior will make everyone around him feel better (and less bruised and bloodied, which is a very important thing!!) but he will be … I’m trying to think of the right word for it. Language is failing me, but I am having images of things like flies with their wings plucked out. He will be … de-winged. It is like tying a person’s hands behind their back before dinner. They can still lean forward and put their face in the plate and eat, but that doesn’t mean everything is okay. Does this make sense?
Also, while you should assume that he will want to co-exist without hurting himself or others if he is helped to find new ways to be, don’t assume that he will be able to communicate with his words to let people know what he needs. I mean, try to help him use words if he can, but don’t be surprised if he is completely unable to communicate why he does things. I was still hitting and biting at age 15 and even though I could read and understand Carl Sagan’s books and I could write and speak reasonably well, I *still* couldn’t explain why I hit and bit instead of saying what I needed. It has taken me many, many years of work to be able to be as clear and lucid as I am today about my motivations and needs. And it’s still a work in progress. Putting feelings and needs into words is HARD! Really hard!
You have your work cut out for you, but it is such important work! I’m not sure how old he is, but I predict that if he doesn’t get mentorship in changing this behavior, there will come a day (if it hasn’t come already) when he knows that he is hurting others, doesn’t want to hurt others, can’t help hurting others, and feels really bad about himself for being a person who hurts others even when he doesn’t want to. I agree that he needs help — for his own sake as much as for the sake of those around him who are getting injured (and as he grows, the injuries will get worse.)
The way to not make things worse is to make sure that something else is fulfilling those needs before taking away one of the few ways he has found to communicate and get his needs met. Make his world bigger before you make it smaller.
Finally, I would like to recommend another blogger to read. She has a brilliant daughter who communicates with a letter board and through typing and Emma (the daughter) is helping Ariane (the mother) to understand a lot of things, including why Emma hits and bites herself. This isn’t insight into why your student hits others so much, but it’s hugely helpful insight into self-directed things like head banging. In fact, I bang my head (much less now than when I was younger, but it still happens) and Emma, at age 11, was able to communicate words that helped me to better understand my own behavior, at age 47. So I feel very strongly about the value of the words I’m going to share with you and I feel very strongly that anyone who works with a person who hits themselves needs to read this.
I hope I’ve been able to be some help at all. I wish I could be more help, but there are so many details that I don’t know (and you shouldn’t share, because of privacy concerns!) and so I can only address the situation in a general way.
Start with this post:
And then read everything in this category:
And thank you for asking a difficult but very, very, very important question, Tana. Be well and keep working hard to make the world a better place.
Posted by PK on October 11, 2014 at 9:52 am
Reblogged this on Walkin' on the edge.
Posted by unstrangemind on October 11, 2014 at 10:21 am
Posted by Lia DiPalma on October 11, 2014 at 2:05 pm
ABA was not invented by Lovaas. The science of behaviorism is a branch of psychology that considers observable behavior rather than internal states. From observing behavior, certain principles to increase or decrease behaviors have been derived. These apply to ALL humans not just people with autism or developmental disabilities. (You know how your car beeps until you put on your seatbelt, that’s ABA for the masses!) It is a technology that can improve society as a whole. There are thousands of empirical studies that confirm that ABA methodology is an effective method to teach skills. No one in the field is quoting Lovaas, I’ve never seen “indistinguishable from peers” in any IEP. IDK what it was like in the past, it is very sad that people have been abused, and I do not deny anyone’s claim that they were abused but, I feel that ABA is being misrepresented on a fundamental level.
Posted by unstrangemind on October 12, 2014 at 7:50 am
Because your response is to fight so hard to defend the term “ABA”, it is clear to me that you may have read all my words but you read them with a heavy prejudice that prevented you from actually hearing my message. That makes me indescribably sad for you. And for your clients. If you go into sessions with the same attitude that you already know everything and there is nothing for you to learn from others, you are probably one of those therapists who is leaving a trail of damage in your wake. Ugh.
Posted by andreak8 on October 13, 2014 at 10:03 am
For what it is worth, I thought Lia’s contribution was not fighting hard to defend, but offering up a perspective from what she hears and sees (e.g., no Lovaas and no indistinguishable goals). I think what this teaches me is that the topic of ABA is so emotionally fraught, that if someone tries to defend ABA that it sounds like a fight and if someone tries to poke holes in ABA it sounds like a fight. I wish we had new terms like “Old Abusive Lovaas-heavy ABA” and “New Positive-style ABA” so we could throw shade on the right thing without throwing the other thing under the bus along with it…
Posted by unstrangemind on October 13, 2014 at 11:17 pm
When someone tries to defend ABA in the face of being told that the very word is PTSD triggering, yeah, it does sound like a fight.
And when someone is upset at the word ABA, even when parents describe what their children are getting under that name and the therapy the kids are getting is wonderful, yeah, that sounds like a fight, too.
And that’s why there are so many heart-wrenching fights out there in the internet-at-large. :-(
Posted by Elizabeth J. Grace on October 11, 2014 at 5:46 pm
This is absolutely excellent. I had been working on something like this, then became derailed for a while. But you have said so much so well, Sparrow! Would it be ok if I re-publish this on Tiny Grace Notes for those readers who have been waiting? I’ll link back here too of course if you say yes :D
Posted by unstrangemind on October 12, 2014 at 7:51 am
Thank you, Ibby. Let me answer your question privately.
Posted by Tana Jimenez on October 11, 2014 at 11:08 pm
Wow, that was an amazing response. The child is 4 and just started special ed last December. His speech is non-functional echolalia, so we are all assuming that his aggression is a form of communication. He doesn’t want to do something, he hurts someone who then cannot continue the interaction, and he gets his way. After he connected with my face, he smiled — not because he hurt me, but most likely because he got his way and did not have to transition. I will read everything you suggested because we really want to help this student and his parents.
Posted by unstrangemind on October 12, 2014 at 11:42 am
Thank you, Tana. It definitely sounds like his hitting is a way to communicate and the smile is satisfaction at getting heard, not happiness to hurt you. It’s really hard on kids to try to communicate needs and not get heard. I have really clear childhood memories and that’s something I remember really well, the frustration of expressing myself and feeling 100% confident that the people around me heard and understood (which I now realize they may not have) and were just choosing to ignore me and not acknowledge my communication. That is a heavy frustration that can pretty quickly lead to hitting and biting feeling like the only option to getting heard. Echolalia is especially difficult because the child often believes they are conveying meaning with the repeated words and phrases and feels extra frustrated that the people around them aren’t getting it. This is really hard on everyone — both the kid, who can’t understand why they aren’t getting their needs met, and the family, teachers, therapists, etc. around the kid who are sifting through those words, trying to find any tangible meaning hidden in there and not finding anything they can latch on to.
Posted by brainreels on October 12, 2014 at 8:58 am
I recently got a biiiiig eye roll from a speech therapist when I mentioned the acronym PLODO: people living off disability oppression. She did not take kindly to my assertion that speech therapy can be complicit in disability oppression. You have explained what I was trying to say in such gorgeous, honest terms. I’m so grateful for this post with its clarity and compassion. Thank you!
Posted by Khaos. (@dragonIRL) on October 12, 2014 at 4:21 pm
Hi hi I love this. I’ve been doing therapy with autistic kids for two years now & have seen my fair share of essentially crap therapists. It is physically painful for me to know kids are miserable when certain therapists come to their house :( We do play based therapy, we shouldn’t be making them so miserable they never want to see us again.
Posted by Kelly Vista on October 12, 2014 at 6:38 pm
Although I empathize with your torment with regards to your personal experience with ABA, after reading this article I am left with confusion as to whether you think ABA is useful at all. If so, perhaps you could suggest what “good ABA” looks like. On the other hand, if you don’t think ABA is useful at all (or does more harm than good when all is said and done, in any form), then it would be interesting to hear what you suggest us parents should do… (if anything)
When I read sentences like: “The outward appearance is of improvement, but with classic ABA therapy, that outward improvement is married to a dramatic increase in internal anxiety and suffering.”
I really question to what extent this is just your experience or whether you believe this is fundamentally the case and that ABA (or any therapy) just cannot be done in a way that is helpful. And by helpful, I am referring to the “net positive” here — none of us parents want to focus on getting a behavior right at the expense of damaging the internal psyches of our children.
Please keep in mind that so-called “typical children” are raised everyday in this world using basic behavioral frameworks that praise their good behaviors, don’t encourage their bad behaviors, and enforce adherence through limits, etc. That is, like it or not, most people are raised by parents who (even if they do so lightly) shape their child’s behavior. It is the rare case that a child is left totally to themselves without any feedback from a parent/caregiver towards what that parent/caregiver feels is desirable/not desirable.
Posted by unstrangemind on October 13, 2014 at 6:42 am
Re-read my essay and you will understand why you are asking all the wrong questions. It is impossible for us to have the discussion you are trying to have with me because you are using too many un-defined terms for either of us to know if we are talking about the same thing or completely non-communicating. This topic is more prone to misunderstanding than a Protestant, Catholic, and Eastern Orthodox theological summit on the nature of salvation.
Posted by Markierungen 10/13/2014 - Snippets on October 12, 2014 at 10:37 pm
[…] ABA | Unstrange Mind […]
Posted by RECENT BRILLIANCE FROM BLOGGERS - Autism Mom on October 13, 2014 at 2:38 am
[…] Mind – ABA – This is a thoughtful and thoroughly well-written post analyzing the pros and cons of ABA […]
Posted by PK on October 13, 2014 at 7:51 am
Sorry for the novel-length post, but I got very frustrated….I’ve read 3 posts by what appears to be BCBA’s and sadly, the people who MOST need to get the point of this post are jumping to the defense and completely missing the point (as I understand it) – which is that at the core of any treatment for autistic children/people must be the awareness and respect of the INNER EXPERIENCE of the person who is experiencing the treatment. If you do not understand the BASIS of the behavior that you are trying to correct, or better yet, if you do not understand that there are behaviors that DO NOT NEED TO BE CORRECTED (i.e. stimming, eye contact, etc.) just because they are DIFFERENT, then you are doing a MASSIVE dis-service to your clients and potentially harming them.
These two paragraphs seem to be glossed over by defensive BCBA’s but they are the CORE of what they need to understand.
“In my opinion, the goal of therapy should be to help the child live a better, happier, more functional life. Taking away things like hand flapping or spinning is not done to help the child. It is done because the people around the child are uncomfortable with or embarrassed by those behaviors. But those are coping behaviors for the child. It is very important to question why a child engages in the behaviors they do. It is very wrong to seek to train away those behaviors without understanding that they are the child’s means of self-regulation. When considering whether you have made a wise choice in what therapy you are providing your child or not, you want to always remember a few cardinal rules: behavior is communication and/or a means of self-regulation. Communication is more important than speech. Human connection is more important than forced eye contact. Trust is easy to shatter and painfully difficult to re-build. It is more important for a child to be comfortable and functional than to “look normal.”
“Now you know what to watch for. Your child’s therapist may use the term “ABA” in order to get paid, but they might not be doing these harmful, degrading, abusive things to your child at all. If your child’s therapist is respecting your child, not trying to break down the child’s sense of self and body-ownership, treating behavior as communication rather than pointless motions that need to be trained away, valuing speech but not at the expense of communication, giving your child breaks to recover and not over-taxing their limited focusing abilities . . . then they can call their therapy anything they want to, but it is not ABA. (And hold on to that therapist! They are golden!) “ from Unstrange Mind’s post.
The paragraph above is the FREAKING ANSWER to “perhaps you could suggest what “good ABA” looks like.” (Ms. Vista)
““typical children” are raised everyday in this world using basic behavioral frameworks” – yes, and “typical” children are not undergoing condensed, potentially adult work-week length behavior targeting. Generally we typicals learn in a CASUAL, in-the-moment/experience way. so this line is bullshit. ABA for autistic children looks nothing like the “typical” child experience of behavioral learning. (Ms. Vista)
How in the name of all that’s holy can you compare quitting smoking “aba” to “stop looking autistic” ABA? You immediately jump to “correcting behaviors” and ignore the question/issue of the behaviors that are often unnecessarily targeted for correcting – flapping/eye contact vs. hitting. (Ms. Robinson)
“I’ve never seen “indistinguishable from peers” in any IEP.” Have you seen an IEP that includes “will use eye contact…”, “will not flap, rock, etc.”? If the answer is YES – and it has to be – than you HAVE SEEN “indistinguishable from peers” in an IEP. (Ms. DiPalma) MY SON”S IEP included eye contact goals – which we stopped and changed to facial referencing because eye contact was hurtful to him, and because I LISTENED to autistic people.
WHY IS THIS SO HARD FOR YOU TO UNDERSTAND? (Ms. Vista, DePalma, and Robinson).
Posted by unstrangemind on October 13, 2014 at 11:11 pm
Thank you, PK. I was going to say thanks for having my back, but really you have the children’s backs so I thank you infinitely more for that. The seat-belt analogy got to me, too. Sure, the beeping to tell you to buckle your seat belt might be ABA, but any car owner has the option to disable that beeping. Just try to disable a mandatory therapy session!
Posted by andreak8 on October 13, 2014 at 9:55 am
Thank you for sharing these words. I believe this piece should be on the list of must-reads for every autism parent (and autistic person old enough to enter this fraught arena); on the list with Diary’s Welcome to the Club and Mom NOS’s Toaster Brain in a Hair Dryer world.
As the mom of two wonderful, happy, brilliant, engaging autistic elementary school kiddos who have benefited from early intensive ABA therapy at home, I only wish you had expanded on this thought a little more,
“If your child’s therapist is respecting your child, not trying to break down the child’s sense of self and body-ownership, treating behavior as communication rather than pointless motions that need to be trained away, valuing speech but not at the expense of communication, giving your child breaks to recover and not over-taxing their limited focusing abilities . . . then they can call their therapy anything they want to, but it is not ABA. (And hold on to that therapist! They are golden!)”.
Is this true? Can there be no such thing as good, positive ABA? I am sure what our kiddos have been doing is ABA – it was just amazing, caring, thoughtful, professional ABA. Our therapist is a Board Certified Behaviour Analyst with a Masters in Education. She has said that ABA has changed significantly over the last 20 years and that she doesn’t practice all the things she was taught. There is good, new, positive ABA out there, and we can still call that ABA, no?
I don’t think our children would run down the hall to their ABA session if it was torture. At least I hope not. And it was 20 hours per week – I know they worked very hard to gain the language, physical, OT and social skills they have gained. Our golden ABA therapist said that having parents that live an ABA life with their kids is the only real way to get up to 40 hours per week. So we know what language skills they are working on, or what social skills, and we work on them through every day life and play.
Our litmus test of whether we are on the right track has always been whether our children were happy. Our children are joyous. There are tears and there are tough moments, but they are fleeting and vastly outweighed by the joy, as it should be for any childhood. Any life, in fact. Tears and joy, with far far more of the latter.
Thank you again. Sorry for the long post. Glad to have discovered your blog!
Posted by andreak8 on October 13, 2014 at 10:44 am
Bah – wish we could edit comments. I have now read your comments above, one where you said ABA is the acronym for a whole lot of awful for many autistic people. So saying good ABA and bad ABA doesn’t help. I get it. I think I do, anyway. Should good, positive, helpful, caring ABA just be outright renamed?? I feel like it would be such a huge loss to toss good ABA out. I don’t have the answer, I’m honestly asking.
Posted by unstrangemind on October 13, 2014 at 11:20 pm
Thanks, andreak8 – I think renaming the new stuff would be a world of helpful. But I also think it’s not going to happen because there’s been so much lobbying for so many years under the name ABA and many government policies and insurance regulations specify ABA and only ABA ….. thus forcing everyone to keep the ugly name for the good new therapies or else they never get a chance to be implemented because no one will pay for anything that’s not called “ABA.”
Posted by unstrangemind on October 13, 2014 at 11:15 pm
The problem is that the new ABA is side-by-side with the old ABA. So long as both are being practiced under the same name, the battles will rage on. Because the new, positive ABA is not the classic ABA. When you change from something bad to something good but keep the same name, there will be confusion. When there are a significant number of people who have been (and people who continue to be) traumatized by the bad version, it’s not surprising that they (we) react negatively to something completely different and new that’s keeping the same name.
All that said, your litmus test is wonderful! Yes, children running down the hall with happiness and anticipation is a wonderful thing! Keep it up! Your children are so fortunate to have you for a parent and so lucky to have a therapist who engages them and makes them happy and eager to grow and learn. And that is and always should be the bottom line!
Posted by What’s up with the blind spot? | Walkin' on the edge on October 13, 2014 at 3:44 pm
[…] are non-autistic professionals/parents. I saw it on a very well balanced, well written post by Unstrange Mind. I just don’t get […]
Posted by Emma on October 13, 2014 at 7:57 pm
Reblogged this on Healthy Possibilities achieving autistic potential and commented:
I rarely re-blog but this is very well written piece that clearly addresses one of the common misunderstandings between auties/aspies and parents of young children with spectrum diagnoses. It may feel like a confronting read but please persevere.
Posted by Emma on October 13, 2014 at 7:58 pm
I re-blogged, thanks for writing with such clarity on this emotive and important topic
Posted by unstrangemind on October 13, 2014 at 11:22 pm
Thank you, Emma, both for re-blogging and for your kind comments.
Posted by Andrea Libutti on October 13, 2014 at 8:00 pm
Thank you for this beautiful essay. I am a mother of a 10 year old boy with autism. He had intense, 40 hours per week, ABA therapy since he was 20 months old. It never felt right to me and I stopped the after school ABA two years ago when I learned about the Son Rise program. I never liked the coercive nature of ABA and you have articulated so well why it never sat right with me. Call it mother’s intuition. It saddens me so that the only “effective” program that is paid for is ABA. My child has taught me so much about being human. It was from his inability to connect, because of his autism, that I began soul searching and have come to realize that he is doing the very best he can in a very over stimulating world. I have learned more about autism from reading every book I can get my hands on, that was written by individuals with autism, than any other educational program or therapy. Every parent and teacher of a child with autism should read these books. Temple Grandin, William Stillman, Donna Williams, Tito and Naoki Higashida (The Reason I Jump – one of my favorites)- their works are so inspiring because they offer an understanding of their world, and what it is like to be autistic.
I really want to thank you for offering such a meaningful dialogue. My son is thriving because we love and accept him where he is and we no longer coerce him to look normal. We love the Son Rise program. I wish more people knew about it. My son is talking, connecting with us, joking, empathizing – doing all of the things we want for our children, and he is doing so from a place deep within himself. Because he wants to, not because he is being forced to. If parents and teachers only understood the profound effect they could have by taking a loving, non judgmental, and accepting approach – they would realize the exquisite paradox – when you stop fighting, you get it all. My son is brilliant and he is emerging into his brilliance because we stopped doing ABA and started understanding who he is. Autism is not the tragedy that everyone thinks it is. My child is a gift. When you approach a child from this vantage point, the outcome is so different than the fight to make them normal. Thank you so much for saying what needs to be said. With much gratitude, Andrea Libutti (www.andrealibutti.com)
Posted by unstrangemind on October 13, 2014 at 11:25 pm
Thank you, Andrea! Hearing about the transformation in your son made me smile so big! What a wonderful thing to read at the end of a difficult day. May your son’s brilliance continue to shine forth and may your whole family be blessed with happiness and health every day!
Posted by Andrea Libutti on October 14, 2014 at 5:31 am
And may YOUR brilliance continue to shine forth as well! I wish you all the blessings too. Thank you!
Posted by shellybelly9 on October 14, 2014 at 9:35 am
Before I became the mother of an autistic 3 year old boy, I was already what it’s called “attachment parenting” advocate. Also, before the diagnosed of my son, I worked for a big school board in Toronto and I saw the autistic classroom and teens every day… when I finally learned what ABA was, I thought it was not right from the begining… it just doesn’t make any sense. If you see those kids and you know the core of attachment pareting, there’s no way you would agree with ABA.
Posted by unstrangemind on October 14, 2014 at 10:55 am
Posted by Gems on October 14, 2014 at 9:02 pm
I have Asperger’s Syndrome and am a fan of horror films. I learned through watching horror films a common theme to inspire fear is forced compliance. Horror films validated my fears about being pressured into compliance in special ed at school. One of the things I say when I read about stories like Janie’s is most people would be shocked if they realized how many situations Autistic people are put in that are similar to ones in horror films.
I thought if I had an opportunity to do a short horror film for a anthology like the ABCs of Death about Autism what would you do. I considered using first person perspective, so the audience sees the person’s perspective through the camera. Then have abusive things done to Autistic people done to the audience.
There were two problems I had with this, aside from getting people to act in it and so forth. The first was people might use the video as a way to claim people with Autism suffer and need to be cured. The second was concern over it being ableist as one of the keys to a horror film is some exaggeration. I thought first person perspective might eliminate this, so when the character is melting down it’s not shown as some sort of spectacle akin to appearing posessed.
I just thought I’d mention my idea in case anyone likes it, and thinks perhaps horror film techniques could be a good way to get people to understand how it feels when sensory issues or eye contact affect us. If you aren’t easily disturbed, the ads for the Montana Meth Project are a good example of what I’m talking about. It might be controversial, and cause curbies to go into their histrionics, but it would cause people to face that yes, it really is that bad.
Posted by REBLOG: ABA | Unstrange Mind | Ever So Gently on October 15, 2014 at 5:28 am
[…] “ABA” | Unstrange Mind (click here). […]
Posted by Heather Newman on October 15, 2014 at 5:43 am
Thank you for writing, this is a beautiful post. Yes, communication and connection are more important that appearing “normal” and some of the behaviors that therapists try to eliminate are coping skills. My son has head and hand gestures that he uses when he is feeling overwhelmed or following an intense train of thought. If we were to keep him from using them because they aren’t what most people do, we would be removing his ability to relieve stress energy and express his feelings.
Posted by Lisa Daniel on October 16, 2014 at 6:54 pm
Great post! I am the pet human of Spikette the tuxedo cat ;-)
Oh! Hai! :-) Thanks for dropping by!
Posted by Lisa Daniel on October 17, 2014 at 12:14 am
I made my Facebook page public, if you want to see some pictures of Spikette and some other stuff. She’s become quite insufferable since I told her she has a fan :-D. It’s Lisa CatLady Daniel.
Posted by Page Redmon on October 17, 2014 at 4:39 pm
Thank you so much for sharing your story with everyone. I’m the Parent of an Autistic Child (now a 10 year old, 5′ semi-verbal low functioning son with DD/ID). He’s so LFA, that by 15 months the pediatrician was talking about autism. We started him in Speech/OT/Play therapies at 18 months, and TEACCH (we’re in NC) diagnosed him at 3 years old.
I never did the ABA, it sounded just scary to me. I did the opposite approach. Instead of dragging him out into our world, I got down on the floor and into his world. If he were laying on the floor, lining up his cars, and staring at them, I would lay down on the floor next to him and grab some cars from the bucket, line them up, and just stare at them, too. So one day, I’m laying on the floor reading a magazine, and he came over, laid on the floor next to me and started “reading” a children’s book. I glanced at him, and he looked at me and made eye contact. It was the first time I really felt a connection with him, and it was so awesome.
Over the years, he’s stopped the headbanging, tippie-toe walking, hand-flapping, violent attacks, sitting cross-legged for hours rocking back and forth. When an NT little girl fell on the playground and started crying, he ran over, first one there, got down, patting her on her back, saying “theh, theh” (I think “there, there”).
The Speech therapist once told me to make Michael say a sound (any sound) to request food/water/toy and withhold it until he complied. I did the opposite. I made a snack stand on the dining room table with a bowl of fruit, graham crackers in baggie, etc… and a small refrigerator filled with juice and water bottles. I figured he’d feel more independent and in control that way. He can now just go in the pantry, and he actually says words (soup, cookies, can list a variety of fruits and vegetables, potato chips, etc….), which allows him to tell me which items he’d like packed in his snack box for school the next day. (Once again, he has control over something.)
He doesn’t have a lot of words in his vocabulary, but he works really hard and sometimes I even get basic sentences. It frustrates him when he can’t use sentences to communicate, because he wants to. I just stay patient and nod and usually with some pantomime and some words, we can work it out. Sometimes it’s really hard when he’s just sobbing and I don’t know what is wrong. Then I just hold him and rock him and tell him how much I wish I knew what to do to make it better, because I love him and want to make it better.
I wish you could see him at a Cub Scout meeting, where at snack time, he’ll want to hand out the bags of chips and juice boxes to everyone. He wants to be a part of things and interact, and we look for those opportunities. We’re very blessed to be in a county where they have AU classrooms. He has a teachers, two TA’s, and six students. He has the same teacher (whom he loves) from 2nd-5th grade.
Not everyday is a perfect day, but he has come *so* far along the way. A few years ago, when he met with his case manager from TEACCH, she was surprised at how he was further developed then she had anticipated he’d be at that age. I’m looking forward to taking him to Chapel Hill this fall to visit them and see what kind of ideas they might have for him at this point. After reading your inside viewpoint, I’m so glad that when I looked into ABA I thought that it didn’t look like a program I’d want him in. And he now makes eye contact with us quite easily, and I never once have taken my hands and forced his head to do so. Thanks again for sharing!
Posted by unstrangemind on October 18, 2014 at 3:17 am
Thank, *you*, Page! What a beautiful and encouraging story and how wonderful for all of you! Your love comes pouring out of every word you write.
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