A kinder ABA is a therapist driving you to the point of frustration, then offering to hold your hand

https://link.springer.com/article/10.1007/s40617-023-00833-w 

Good grief is all I can say. 

Adding the prefix of "Kind" to something does not automatically make anything automatically Kinder. As is peppering a paper with the word "Kind" to sublimely influence you that it must be kind. 

And a sample size of 4 autistics in the study makes this a valid method, how?

And what did this  "kind" translate to exactly. when a therapist drives you to the point of a tantrum in the first place, then offers to hold your hand, and saying "I can see you are frustrated."

Is this a new marketing strategy by the (massive-profits with no accountability) ABA industry to make even more profits of desperate families. 

Please don't joke around with studies trying to whitewash stuff. This is not helping.  

Power dynamics of ABA

https://autisticselfadvocatesagainstaba.wordpress.com/2020/04/13/problematic-and-traumatic-why-nobody-needs-aba/?fbclid=IwAR3aeHROwIEr2uaRmsw7i1oBuOy90Cln8cMgi_nJ4bZGT87VckcUhTUoOqA

Some points that resonated in this article. 

The problem with reinforcements. 

• "tablet time” is used as reinforcement. This is a problem because many autistics rely on their tablets for communication. Many autistics are non-speaking, and to take away their means of communication is one reason increasingly aggressive or “challenging” behaviors persist — they are not being heard or understood and the only way left to communicate their discomfort, pain, or any other needs has been taken away."

The loss of childhood.

• "A child is typically expected to participate in 25-40 hours of ABA therapy each week; that is 5-8 hours a day of repetitive, uncomfortable, or potentially painful demands and broken down tasks, of few or no breaks, of being presumed incompetent, and of not having adequate accommodations.
A full-time job is expected of kids under the age of 4, and there is no strong evidence to suggest that it is effective or beneficial. Children should be allowed to have a childhood, and that is not possible when they must sit through 25-40 hours of therapy each week. This level of intervention leaves little time for rest, play, and learning outside of therapy, which can wreak havoc on a child’s mental health."

Lack of training and quality control. 

• "Many ABA practitioners are Registered Behavior Technicians (RBT)s, which any 18-year old with a high school diploma could be by taking a 40-hour training and passing an exam."

Long term trauma and PTSD

• "A survey of 460 autistic adults and caregivers of autistic children evidenced that 46% of those who participated in ABA therapy met the diagnostic criteria for PTSD, and 47% of those meeting this diagnostic threshold experienced severe symptoms (Kupferstein, 2018)."

Yet, still touted as the gold-standard EBT

• "Yet ABA is still widespread throughout the United States and it is recommended under the premise of being an effective evidence-based practice. However, there is weak evidence that ABA is an effective behavioral treatment. Rated on the GRADE system the quality of evidence is low to very low (Reichow, Hume, Barton, & Boyd, 2018). In fact, “of the 58 studies done on Lovaas’ ABA therapy, only one was found to meet the U.S. Department of Education’s standards for scientific evidence."

Related Posts

• https://uniquelyhari.blogspot.com/2023/05/private-equity-and-aba.html
• https://uniquelyhari.blogspot.com/2023/04/this-is-2023-shocks-are-still-part-of.html
• https://uniquelyhari.blogspot.com/2019/04/mental-cripple.html
• https://uniquelyhari.blogspot.com/2023/05/who-has-dx-and-who-is-professional.html

An utter lack of accountability

Today there was a news article about a 7 year old autistic boy who went missing from his school during the school day. This was during a snowstorm, and he was found shivering and soaked in the middle of a busy traffic intersection by good neighborhood samaritans - and wearing just a thin t-shirt. 

The school of course insisted that the child had been missing a mere 2-3 minutes, though investigations show him having walked through a patch of woods and being outside for over 35 minutes. 

There had already been a plan in place as this autistic kid frequently eloped (a term used for kids who wander away). The police and parents were to be informed but neither happened. The good samaritans saw a kid darting about in traffic, stopped the traffic, rescued him, took him home and wrapped him in blankets. 

Unfortunately the school district missing an autistic child during the school day is more common that you would think. As is the practice of gaslighting parents on the details (fear of being sued!!). The fear of being sued apparently more critically important than any safety concerns of disabled children. 

When I was younger (~grade 3-4) I was in a classroom simply known as Room 20 in Dilworth Elementary. An autistic kid in my class did go missing for several hours. The school went into a lockdown as they searched for him. We were all asked to come indoors and stay inside. 

Later that afternoon, an old man who lived a few streets away returned the kid as he had found him wandering around. 

Of course, there was a lot of discussion in the class that day between the teacher and the classroom aides about how to downplay or not report this incident to the parents at all.  I don't know the end result of how much the parents were told,  but those overheard conversations about how to avoid revealing the truth about a missing child to its parents by educators are deeply disturbing. 

How can we autistics fully put our trust and faith in an education system if we don't believe educators (the ones supposed to nurture and help us) will only will watch their own back and not your back. 

https://www.youtube.com/watch?v=sJBoKDEUJy4

https://www.cambridgetoday.ca/local-news/autism-advocates-call-for-more-school-supports-after-7-year-old-with-autism-found-at-busy-intersection-8197389

Where do the behavior autistics go?

In this month of autism acceptance and autism belonging, I want to point to a very concerning issue. 

When your disability is TOO VISIBLE, you are made INVISIBLE by society, warehoused somewhere where you can be out of sight and out of mind of society. 

This is the plight of many adult autistic peer friends that I know. The adult autism world of inclusion and belonging, only wants the good patients. Special education had never wanted "behavior kids - the ones with meltdowns, aggression and SIBs", so will just house them in some classroom or NPS, ready to spit them out at age 22 at which point their legal obligation ends under IDEA. 

I truly believe that there is a biological basis to all this SIB, aggression and other behaviors. There also seems to be confusion that such behaviors are seen only to those with low IQ or lesser speaking ability or whether you have access to communication.  I know an equal number of autistics, considered "moderate" or "high" in childhood who reach exactly the same place by early/late teen-hood;  tossed between psychiatric facilities or stuck at home with their families. Most are heavily medicated with pharma cocktails that don't seem to work at all for autistic physiology.  

The adult autism world does not want these "behavior autistics" either. Adult Day Programs (ironically meant for autistics) don't want them, even Group Homes for autistics want only the 'well-behaved' and easily manageable ones. 

Let me give you an example of 2 peers that I know -  one sits in the corner all day and is regarded as a model student by that Adult Day Program. The other peer is at home with his aging parents as no day program will take him - "too much behaviors." And he is just one of the many dozens I personally know and grew up with in this scenario.

Behavior therapy agencies will tell the family that that autistic is "not a good fit" for their program. If behavior therapy agencies don't want to help with behavior, then why is the  word "behavior" in their name at all. Autism professionals too will find PC alternatives that essentially say "not a good fit" for the autism they don't want to work with. 

Autism Clinics at major hospitals too, end at age 18. Did the autism and behaviors magic away in adulthood. 

Essentially the entire autism professional space is rending such autistics even more invisible. 

And doing such a fantastic job of it that the other autistics (invisible disabilities/neurodiverse) don't know or believe our existence.  

In a recent twitter post an adult autistic pointed to lack of numbers of such adults as evidence that they don't exist - and since she herself had started to talk at only at age 3 after therapy; it must mean that ALL autistics must have regained speaking ability and inclusion sometime in childhood. 

Are you really surprised at this. When you are out of sight is out of mind of society; it also means nothing need be done to help.  And it merits some societal attention only when it makes it to the news in a dramatic fashion such as in the article below which will be lost in the in the quicksand of short public memory. 

And did I mention, it is incredibly hard to even find support staff as there are enough "easier" adult-autistics clients job market. So staff don't want these autistics either; everyone wants the easy button. 

There is only waitlists or rejection at every turn. 

Where are the services and supports for these adult autistics? What is the long term outcome? What is the plan?

It does not have to be like this. I truly believe that there is a biological basis to all this SIB, aggression and other behaviors.  Where is the biomedical research that looks for answers  as to what's going on at a physiological level so that we can work on targeted solutions. Given that traditional pharma is not working, when are we going to get targeted interventions and pharma that actually work with autistic physiology?

How can there be inclusion and belonging for these autistics unless we find solutions to some prior steps first?

Why is this not seen as an urgent need in autism research? 

And to the growing numbers of Neurodiverse community out there, the action I request of you is -  Include everyone, including the marginalized autistics. Help find solutions to these issues so that every autistic can be part of the dream of Inclusion and Belonging. 

https://www.rgj.com/in-depth/news/2023/02/07/months-at-reno-hospital-young-man-with-autism-has-nowhere-else-to-go/69860556007/

 

Where do the Autistic Crips Go?

In a few months, the California wildfires will be back.

We don't realize how much more disabling the climate change is for the disabled

Where Do the Autistic Crips Go?

I’m an autistic crip with sensory disabilities.

One of my many labels, too many to recount. 

Crips are not priority when natural disaster strikes.

2005 

... Katrina Disabled abandoned by caretakers

2018 

...Paradise CampFire, more of the same. 

We are ever the forgotten, not-accounted-for divergents. 

September 2020, 

...Bay Area Skies glowed red

Nuclear orange sky from countless wildfires. 

Evacuations were abound even with Covid around. 

It just was not safe to social distance at home. 

An autistic crip, I will just call him Zee 

Wildfires by his home, the air not fit to breathe.

He had legs to walk out, his was a different disability

But where would Zee go, evacuation is hardly easy

A shelter was not a place he could hang out. 

Sensory sensitivities, food allergies, social anxiety, compromised immunity. 

…. On top of sheer uncertainty. 

Where oh, where can autistic crips go?

Shelters are planned for the non-crip mindbody

Smoked filled air, but my home not in path of fire

Zee came, stayed a few days with me. 

It was not easy but it was better than a shelter.

Zee had a place to go for this round of emergency

The fires came close but his home did not catch fire. 

He was able to go back to his own home eventually

But where did the other autistic crips go?

Where will I go if this happens to me?

Next year, 

... the wildfires will be back.

Prepare and plan, says the authority?

Pack a bag with all that you need.

But...

How do you prepare for something like this?

How does one prepare sensory sensitivities and anxiety?