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Stormy

Myka Stauffer of The Stauffer Life: Where's Huxley???

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HarryPotterFan

Thank you to everyone who shared their perspective on autism diagnosis/label and ABA. I’m always interested in learning more.

I would love for Autism Speaks to go through a huge overhaul. As the biggest, most well known and funded autism organization they have so much power. They have so many connections to research institutions and policy. They could do a lot of good, if they wanted. I know they have a “Response Team” now that helps connect people to local resources. I’ve never used it, but that is something that is so needed. One centralized place people can go to for help finding local providers/help.

I’ve also wondered if some providers call label some things that aren’t ABA as ABA. ABA is the only autism therapy that has some sort of insurance mandate in every state in the US. So maybe some providers might bill things as ABA so that it is covered by insurance. Otherwise it’s all out of pocket and completely unaffordable. Just a thought... 

@Stormy I wonder how much your psychologist’s hesitance for you to get therapy stems from people thinking of autism as a “male” issue. Women/girls tend to get diagnosed much later or misdiagnosed first. I’ve also read that women/girls are better at camouflaging, so some providers miss how much they’re struggling. 

On 6/26/2020 at 11:01 PM, Candycane36 said:

Well this is interesting if you watch her interview on without a crystal ball. The interview so so telling many people people that she had a much darker view  for her reasons of adopting huxley. I really hope they are not true

 

What do you mean? I haven’t watched and don’t feel like giving that woman more views. 

UPDATE: The Stauffers won’t face charges for rehoming Huxley. The new adoption is legal and is being done through a private agency. The Stauffers claim that he had aggressive behavior towards the other kids.

https://www.buzzfeednews.com/article/stephaniemcneal/myka-james-stauffer-no-charges-huxley-case

Edited by HarryPotterFan

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JermajestyDuggar
18 minutes ago, HarryPotterFan said:

Thank you to everyone who shared their perspective on autism diagnosis/label and ABA. I’m always interested in learning more.

I would love for Autism Speaks to go through a huge overhaul. As the biggest, most well known and funded autism organization they have so much power. They have so many connections to research institutions and policy. They could do a lot of good, if they wanted. I know they have a “Response Team” now that helps connect people to local resources. I’ve never used it, but that is something that is so needed. One centralized place people can go to for help finding local providers/help.

I’ve also wondered if some providers call label some things that aren’t ABA as ABA. ABA is the only autism therapy that has some sort of insurance mandate in every state in the US. So maybe some providers might bill things as ABA so that it is covered by insurance. Otherwise it’s all out of pocket and completely unaffordable. Just a thought... 

@Stormy I wonder how much your psychologist’s hesitance for you to get therapy stems from people thinking of autism as a “male” issue. Women/girls tend to get diagnosed much later or misdiagnosed first. I’ve also read that women/girls are better at camouflaging, so some providers miss how much they’re struggling. 

What do you mean? I haven’t watched and don’t feel like giving that woman more views. 

UPDATE: The Stauffers won’t face charges for rehoming Huxley. The new adoption is legal and is being done through a private agency. The Stauffers claim that he had aggressive behavior towards the other kids.

https://www.buzzfeednews.com/article/stephaniemcneal/myka-james-stauffer-no-charges-huxley-case

They always claim aggression against the other kids as their reason to rehome. Guess what! My kids are aggressive against one another too. My siblings were aggressive towards me. My cousins were aggressive toward their siblings. No one was rehomed. We were given consequences for our behavior. You work with the children and their behavior. You don’t just rehome. 

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Aine
On 6/28/2020 at 2:43 AM, Peaches-n-Beans said:

To the first bold: not stimming and holding eye contact mean like... less then nothing. I can hold eye contact and not stim, i'm still autistic. You know why I can do these things? Because society in some way shape or form punishes me for not holding eye contact and for stimming. Be it, "look at me when I'm talking to you" scoldings from adults to those "behavior charts" in elementary school classrooms. Society rewards neurotypical behavior and punishes neurodivergents. Self stims are a good thing most of the time. Unless they're a self harm stim (like huxley bashing his head into the wall) they don't need to be stopped. Let me wave my hands, let me slap my chest, let me repeat the word "rickon' over and over and over. It's not hurting anyone. Self stimming is only an issue when it causes harm to the individual or another. 

I appreciate your perspective very much and thank you for sharing your story, @Peaches-n-Beans. When talking about things like eye contact and self-stims, I was mostly addressing the Stauffers trying to justify their abhorrent parenting choices with the term "severe autism". Of course, it's Autism Spectrum Disorder, so a spectrum, and I was merely saying that what I observed in the videos isn't in line with a small child that is on the end of the spectrum with the most profound functional difficulties. I also made a statement that self-stims don't matter because the kid needs comfort, if he does have them. I have never advocated for the type of behavior therapy that punishes or even tries to change self-stims unless they are dangerous to the child or other people.

Second, there is a range of what constitutes "ABA Therapy" and I specifically said for fine and gross motor skills. I guess an occupational therapist could do so too, ABA comes to my mind because as an ABA therapist in the past, it is the framework I used to teach skills that require more complex sequences of fine and gross motor skills like pulling down pants or putting on pants, putting on a t-shirt, doing up buttons etc in children struggling with things like that. I have always used reinforcement (never punishment) to teach these skills and as a Clinical Psychologist currently and in the past when doing ABA exclusively, I would never take part in any therapy where the goal is to make a child who is neurodivergent appear to be neurotypical. A big part of any therapy protocol I have been apart of or now conduct is parent education, readjusting their expectations, helping them appreciate that many of these "divergences" can be strengths and to support those strengths in their child because society doesn't tend to be set up to do so currently. So my therapeutic goals are finding ways to help the child communicate their needs in a way that reduces their frustration and impedes the relationships that are important to them (dependent on the individual kid as I work with them more as to whether that is signing, single words, gestures, or full sentences), helping them gain some independence and autonomy in their everyday life, and building on their strengths and what they enjoy and like as well.

An add on to the communication thing is when you can help them communicate, they can express their needs regarding distress at over stimulation. I would never be apart of anything like forcing a child who struggles with a lot of external stimulation (noise, movement, touch etc) to be subjected to it in an effort to force them to learn to "put up with it". Uh uh, no way. What I have done is find ways for them to communicate their needs, express their distress, and figured out ways that the child can tolerate environmental stimulation when it cannot be avoided. For example, one 3 yr old I worked with could not go into most stores without having a meltdown because he was so sensitive to the ambient noise and particularly the beeps of cash registers. But he is 3 and his mom was a single mom and needed to do groceries. So he has some noise cancelling ear muffs now and points at things in the store and is able to find some toddler joy at watching things because it was only the noise he couldn't deal with. That's an example of a simple case and every single child on the autism spectrum has been so different because they're individuals and not their diagnosis.

I also want to note that I'm actually not a fan of psychiatric diagnosis at all really. There are huge issues with with it and so on a practical level as a clinician, treatment for whatever that person is presenting with is centered around addressing what is causing them distress in their life and helping them with that. However, the way the medical system/education system is structured in most countries requires us to give a diagnosis so insurance covers their treatment and for things like IEP. For that reason, comprehensive assessment to at least make the most accurate diagnosis is important because while a 'diagnosis' alone doesn't help me at all to be a good clinician (because it's not informative to me about the individual), it seems to be important to society and it's still unfortunately common for someone to be reduced to their diagnosis, which I hate and it needs to change. But I also understand that for some people, especially people who have struggled their whole lives with a disorder (including an anxiety disorder or mood disorder), a diagnosis can be a relief and communication to them that they aren't alone.

I'm sorry to hear about your struggles, @Stormy, and it makes complete sense to me that you experienced depression and anxiety because everyone just wanted you to "snap out of it". As I'm sure you know, psychology as a field is just now (too late) realizing how many girls on the ASD spectrum, especially 'high functioning', were let down and slipped through the cracks because all the commonly used "objective tests" used in psych evals for autism were normed on boys! It's truly ridiculous. There are efforts to try and improve screening and assessment for girls in childhood and women but we're pretty far off still. It's the same with ADHD and the improvements in assessing males and females for ADHD are further along than ASD. It's a rapidly evolving field, and I do think the scientific rigor that is applied to clinical psychology is continually increasing, and an improvement I have seen even in my 12 years of working has been greater research and consideration being given to the perspectives of patients and increasing meaning and fulfillment in lives rather than just "decreasing symptoms".

 

 

Edited by Aine
I got people's names mixed up!

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Aine
52 minutes ago, HarryPotterFan said:

would love for Autism Speaks to go through a huge overhaul. As the biggest, most well known and funded autism organization they have so much power. They have so many connections to research institutions and policy. They could do a lot of good, if they wanted. I know they have a “Response Team” now that helps connect people to local resources. I’ve never used it, but that is something that is so needed. One centralized place people can go to for help finding local providers/help.

I’ve also wondered if some providers call label some things that aren’t ABA as ABA. ABA is the only autism therapy that has some sort of insurance mandate in every state in the US. So maybe some providers might bill things as ABA so that it is covered by insurance. Otherwise it’s all out of pocket and completely unaffordable. Just a thought... 

I agree with you about Autism Speaks.

And also, of course providers label the therapy they are using as ABA that doesn't look like the older more militant kind of ABA "drills" that most people associate with the term ABA. ABA is behaviorism and most evidence-based therapy modalities for the treatment of any psychological disorder, excluding psychoanalysis/Freudian-type therapies, are behavioral at their core.

I don't hold myself up to be some kind of excellent or enlightened clinician but I do keep my patient, their individuality, their strengths, and their wellbeing at the center of any therapy process. Part of that is transparency up front about my conceptualization after a thorough intake and how I'd like to proceed, and I sometimes give people options if their are multiple treatment methods with evidence for what they're experiencing. I try and be collaborative at all times. Most of all, I really try and stay current on the research and read multiple perspectives, when I'm unsure I seek mentorship and do extra research, and I practice therapy techniques with other clinicians frequently. I make mistakes in the therapy room, like sometimes I unintentionally invalidate an emotion and I try and be aware and apologize in the moment or next session if I realized on reflection while writing my notes. I also endevor to be open to being wrong, and as a psychologist at the beginning of their career right now, I never want to become one of those clinicians who gets so set in their ways that they aren't willing to change based on new information for the good of their patient/s.

But yes, we do bill for specific therapy modalities we know insurance will cover for a diagnosis but use other or additional evidence-based methods most suited to that individual patient and their needs in the therapy room because they are seeking help and that's our job and insurance companies are stupid in their rigidity (and for lots of reasons) ;)

Edited by Aine
typo
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Aine
3 hours ago, JermajestyDuggar said:

They always claim aggression against the other kids as their reason to rehome. Guess what! My kids are aggressive against one another too. My siblings were aggressive towards me. My cousins were aggressive toward their siblings. No one was rehomed. We were given consequences for our behavior. You work with the children and their behavior. You don’t just rehome. 

Besides some aggressiveness between siblings being normative to a degree, who could fault Huxley for some resentment towards his siblings?! He was put to bed before the rest of them so Myka and James could spend time with their bio-kids without their other son around! The Stauffers didn't treat him as part of the family once they realized he wasn't going to just magically have what their perception of 'appropriate behavior' is and bond with them instantly and be endlessly thankful to them as a small child for removing him from everything he ever knew. They definitely were not fostering an environment that promoted the idea they were one cohesive family or that Huxley was 'one of their kids' to their other children. Small children generally have a very good basic understanding of 'fair' and are reactive to anything they perceive as 'unfair' to them (reasonable or not). They have little impulse control and their emotion regulation is still developing. On top of that, Huxley was learning to understand and speak a new language so he didn't have a lot of methods to convey his frustration except for aggression. Poor kid :(

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Candycane36

The view that some had was that she actually adopted Huxley thinking he had a brain tumour with the expectation that he would not survive more than a few years.  The interview on without a crystal ball or dad podcast was very telling. She almost  sounds disappointed when they learned his true diagnosis. They followed the alagrathrims and he was was her gold mine. If he was sick it would have bring in her more sympathy and money. I refuse to believe that anyone would have such thoughts regarding a child, but you never know people's true intentions. 

Edited by Candycane36

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MillieJo
On 6/29/2020 at 12:00 PM, Mudgie said:

My experience is 13 years old and we never revisited it as an option. I am glad to hear it's had such positive changes and that your son is thriving. :) These things are such individual and unique processes and that is only one reason I love the Autism community of people. I never stop learning.

I don't necessarily agree that it's the only form of treatment for ASD, but that's a whole other fascinating discussion. 

Thank you for being so kind and understanding when I stated my viewpoint. 

I'm sorry ABA was so hard for you or that you ever felt that you had to "fit in" to whatever kind of category or box that is considered "normal." 

You were so right. We need acceptance! 

Edited by MillieJo

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LiaRose

Honestly, I'd rather see a child who isn't wanted or who was adopted into a home that couldn't care for him end up in a home where he's wanted and can be cared for than for the first adoptive parents to be shamed into keeping him.  A child deserves to be where they're wanted and can be cared for, not forced to remain where they'll know they're not cared for or not wanted.  That force is punitive to the adults, bit also punitive to the kids.  He's where he's loved now, and that is the best for him.

I wish there could be some law where, barring extreme circumstances, being unable or unwilling to keep an adopted child should mean being barred from adopting again.

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Wine time!
DarkAnts
23 minutes ago, LiaRose said:

Honestly, I'd rather see a child who isn't wanted or who was adopted into a home that couldn't care for him end up in a home where he's wanted and can be cared for than for the first adoptive parents to be shamed into keeping him.  A child deserves to be where they're wanted and can be cared for, not forced to remain where they'll know they're not cared for or not wanted.  That force is punitive to the adults, bit also punitive to the kids.  He's where he's loved now, and that is the best for him.

I wish there could be some law where, barring extreme circumstances, being unable or unwilling to keep an adopted child should mean being barred from adopting again.

China started to take action to prevent this from happening. The rules were changed during the adopt process. Stauffers did not qualify under the new rules. It sucks for the child that they were grandfathered into the old rules. He has suffered rejection and loss of his culture due to their actions.

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Cults-r-us
On 6/30/2020 at 3:35 PM, Aine said:

I appreciate your perspective very much and thank you for sharing your story, @Peaches-n-Beans. When talking about things like eye contact and self-stims, I was mostly addressing the Stauffers trying to justify their abhorrent parenting choices with the term "severe autism". Of course, it's Autism Spectrum Disorder, so a spectrum, and I was merely saying that what I observed in the videos isn't in line with a small child that is on the end of the spectrum with the most profound functional difficulties. I also made a statement that self-stims don't matter because the kid needs comfort, if he does have them. I have never advocated for the type of behavior therapy that punishes or even tries to change self-stims unless they are dangerous to the child or other people.

Second, there is a range of what constitutes "ABA Therapy" and I specifically said for fine and gross motor skills. I guess an occupational therapist could do so too, ABA comes to my mind because as an ABA therapist in the past, it is the framework I used to teach skills that require more complex sequences of fine and gross motor skills like pulling down pants or putting on pants, putting on a t-shirt, doing up buttons etc in children struggling with things like that. I have always used reinforcement (never punishment) to teach these skills and as a Clinical Psychologist currently and in the past when doing ABA exclusively, I would never take part in any therapy where the goal is to make a child who is neurodivergent appear to be neurotypical. A big part of any therapy protocol I have been apart of or now conduct is parent education, readjusting their expectations, helping them appreciate that many of these "divergences" can be strengths and to support those strengths in their child because society doesn't tend to be set up to do so currently. So my therapeutic goals are finding ways to help the child communicate their needs in a way that reduces their frustration and impedes the relationships that are important to them (dependent on the individual kid as I work with them more as to whether that is signing, single words, gestures, or full sentences), helping them gain some independence and autonomy in their everyday life, and building on their strengths and what they enjoy and like as well.

An add on to the communication thing is when you can help them communicate, they can express their needs regarding distress at over stimulation. I would never be apart of anything like forcing a child who struggles with a lot of external stimulation (noise, movement, touch etc) to be subjected to it in an effort to force them to learn to "put up with it". Uh uh, no way. What I have done is find ways for them to communicate their needs, express their distress, and figured out ways that the child can tolerate environmental stimulation when it cannot be avoided. For example, one 3 yr old I worked with could not go into most stores without having a meltdown because he was so sensitive to the ambient noise and particularly the beeps of cash registers. But he is 3 and his mom was a single mom and needed to do groceries. So he has some noise cancelling ear muffs now and points at things in the store and is able to find some toddler joy at watching things because it was only the noise he couldn't deal with. That's an example of a simple case and every single child on the autism spectrum has been so different because they're individuals and not their diagnosis.

I also want to note that I'm actually not a fan of psychiatric diagnosis at all really. There are huge issues with with it and so on a practical level as a clinician, treatment for whatever that person is presenting with is centered around addressing what is causing them distress in their life and helping them with that. However, the way the medical system/education system is structured in most countries requires us to give a diagnosis so insurance covers their treatment and for things like IEP. For that reason, comprehensive assessment to at least make the most accurate diagnosis is important because while a 'diagnosis' alone doesn't help me at all to be a good clinician (because it's not informative to me about the individual), it seems to be important to society and it's still unfortunately common for someone to be reduced to their diagnosis, which I hate and it needs to change. But I also understand that for some people, especially people who have struggled their whole lives with a disorder (including an anxiety disorder or mood disorder), a diagnosis can be a relief and communication to them that they aren't alone.

I'm sorry to hear about your struggles, @Stormy, and it makes complete sense to me that you experienced depression and anxiety because everyone just wanted you to "snap out of it". As I'm sure you know, psychology as a field is just now (too late) realizing how many girls on the ASD spectrum, especially 'high functioning', were let down and slipped through the cracks because all the commonly used "objective tests" used in psych evals for autism were normed on boys! It's truly ridiculous. There are efforts to try and improve screening and assessment for girls in childhood and women but we're pretty far off still. It's the same with ADHD and the improvements in assessing males and females for ADHD are further along than ASD. It's a rapidly evolving field, and I do think the scientific rigor that is applied to clinical psychology is continually increasing, and an improvement I have seen even in my 12 years of working has been greater research and consideration being given to the perspectives of patients and increasing meaning and fulfillment in lives rather than just "decreasing symptoms".

 

 

I find MStauffer as unappealing as everyone else, but if Huxley (which it grates they changed his name) was as aggressive to their infant as my ASD grandson was to his infant sister, I am sure they were (rightfully) horrified. This could have contributed to them showing him the door. My jealous  4-year-old grandson had an effective, if not original, plan to rid himself of his sister forever by kicking at herhead, shiving her and trying to stomp on on her abdomen. She is still alive, through providence and being a hardy little person. I think if they hadn't had another baby, Huxley would still be in their home. They probably needed a nanny or more household help. Look at how tSevere stress of too many littles + a special needs child wore down our old friend LFOP  Erica Shupe. in summary: all ASD people are differently gifted and wired so there is no handbook, cure or way to make ASD easy to manage. And you,re all correct, that end did not work for the Stsuffer parents.

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katilac
2 hours ago, Cults-r-us said:

 I think if they hadn't had another baby, Huxley would still be in their home.  

Maybe. But they chose to ignore all expert advice and intentionally got pregnant far too quickly after adopting Huxley. 

I personally think they are too self-centered to have kept him in the home permanently. He might have stayed longer, they clearly had little patience for him from the beginning. 

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usedbicycle

I hope Huxley is better off where he is. 
As for Mykka and her husband, I don't think they're monsters. But through this adoption process they have shown that they were naive, arrogant, unprepared, self-centered, self-serving, immature, ignorant, smug, impetuous, and many more bad adjectives. 

They refused to learn about attachment issues and RAD before the adoption. They became pregnant in spite of all common sense and against Huxley's best interest. The bare minimum would be to admit to all of these mistakes and use their influence to bring awareness to adoption, RAD and autism. The true victims are always the children, never the adoptive families. They should write a big fat check to many organisations working with children who suffer from these issues. 

Instead, their response has been to victimize themselves and that's why I hate them right now.

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hoipolloi
11 minutes ago, usedbicycle said:

But through this adoption process they have shown that they were naive, arrogant, unprepared, self-centered, self-serving, immature, ignorant, smug, impetuous, and many more bad adjectives. 

Which again raises the question of how any reputable adoption agency would allow such prospective parents to go through the process, let alone complete the adoption. I somehow doubt that the Stauffers hid all of these behaviors. 

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Cults-r-us

Additionally, ASD "kiddos" may have meltdowns in public (I have 2 friends whose children disrobe when melting down, 1 of whom is now a 13-year-old girl.  Ours uses foul language + the good, old-fashioned throw yourself on the ground and scream tantrum). People are judging you, looking at you in horror and suggesting your parenting is bad. I don't think the Stauffers, whose brand is posing in white and appearing perfect, are up for the crazy, roller-coaster ride of puzzling behavior or just being different.

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SuperSluth
On 6/20/2020 at 6:44 PM, Ozlsn said:

(not sure how much it was costing to fly to Bali from the US pre-covid, but I doubt it was cheap). 

Highly doubt they paid for the trip. Probably grifted from partner brands or paid with airmiles accrued from business trips (which were probably reimbursed expenses or tax write-offs.) Professional moochers know how to mooch.

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