Very Early Intervention therapy said to be “breakthrough”

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Jakki
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24 Sep 2021, 1:33 pm

agrees with the above post .


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cyberdad
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24 Sep 2021, 11:34 pm

HeroOfHyrule wrote:
Something that's confused me is why neurotypical parents don't already try adjusting the ways they communicate and interact with their autistic children. It's just odd to me how we're the ones with the inability to figure out how to communicate and interact "properly", when neurotypical parents can't even observe their own children and figure out how to properly interact with them.


This is a really good question and one I grapple with all the time. I think the simple answer is that we worry about what will happen to our child when we die. But I am pretty sure nobody on WP or members of the wider autism community (who promote NTs not interfering with autistic kids lives) will lift a finger to help take care of my daughter.

My wife and I want our daughter to be independent and be able to navigate her way in the NT world because if we both die in the next 30 years my daughter needs to be able to communicate and socialise herself as we know there will be nobody to help her.



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24 Sep 2021, 11:38 pm

HeroOfHyrule wrote:
Something that's confused me is why neurotypical parents don't already try adjusting the ways they communicate and interact with their autistic children. It's just odd to me how we're the ones with the inability to figure out how to communicate and interact "properly", when neurotypical parents can't even observe their own children and figure out how to properly interact with them.

I think it is to do with the outdated paradigms of upbringing.

One to do with weeding out or at least give those those who cannot catch up developmentally a hard time, instead of helping them develop.


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HeroOfHyrule
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24 Sep 2021, 11:40 pm

cyberdad wrote:
HeroOfHyrule wrote:
Something that's confused me is why neurotypical parents don't already try adjusting the ways they communicate and interact with their autistic children. It's just odd to me how we're the ones with the inability to figure out how to communicate and interact "properly", when neurotypical parents can't even observe their own children and figure out how to properly interact with them.


This is a really good question and one I grapple with all the time. I think the simple answer is that we worry about what will happen to our child when we die. But I am pretty sure nobody on WP or members of the wider autism community (who promote NTs not interfering with autistic kids lives) will lift a finger to help take care of my daughter.

My wife and I want our daughter to be independent and be able to navigate her way in the NT world because if we both die in the next 30 years my daughter needs to be able to communicate and socialise herself as we know there will be nobody to help her.

I wasn't talking about not teaching your child proper social and communication skills, and I'm actually talking about the opposite. There's a huge difference between learning how to communicate with your child so you can understand them better + they can understand you better so that they can make the most of the things you have to teach them, and just not teaching them proper social skills. :?


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cyberdad
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24 Sep 2021, 11:48 pm

HeroOfHyrule wrote:
I wasn't talking about not teaching your child proper social and communication skills, and I'm actually talking about the opposite. There's a huge difference between learning how to communicate with your child so you can understand them better + they can understand you better so that they can make the most of the things you have to teach them, and just not teaching them proper social skills. :?


I'm not saying our strategy is the best way. but in simple terms we can only provide a template for language/communication from the way that we understand.

Having a teenager makes things doubly complicated because by the time she was 13 she has become adept at hiding her intentions/true feelings so we have to try and decode what she means.



magz
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25 Sep 2021, 4:17 am

HeroOfHyrule wrote:
I wasn't talking about not teaching your child proper social and communication skills, and I'm actually talking about the opposite. There's a huge difference between learning how to communicate with your child so you can understand them better + they can understand you better so that they can make the most of the things you have to teach them, and just not teaching them proper social skills. :?

I view it similarily.
The foundation is good communication with oneself. Realizing what you want and what you don't want. That doesn't mean you have to get everything your way but you need to know what "your way" looks like and how important various parts of it are.
Then, there's communication with the nearest and dearest.
Then, there's communication with the rest of the world.

If that pyramid gets inverted, we end up with a "masking" person, performing a "correct" lifestyle and some day collapsing emotionally without any apparent reason (Hi, that's me! :D ).

Luckily, one can work on making it right at any age. I started at 32, after narrowly escaping being dumped to psychiatric mistreatment for life.


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25 Sep 2021, 8:41 am

A new therapy for children who may have autism risks carrying a hidden cost
James Cusack is chief executive of Autistica, a British autism research charity

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Being autistic, for me and the 700,000 other autistic people in the UK, often means spending a lot of time inhabiting a world that doesn’t work well for you. This is why it’s vital that the needs and preferences of autistic people are better understood. A trial of a therapy whose findings were published this week attempts to address this issue by trying to ensure the needs of toddlers who may be autistic are recognised.

What’s exciting about the findings of this study is that the therapy does successfully boost the social development of the children who receive it. That confirms what autistic people have been telling us for a very long time, namely that the best possible way to help autistic people build skills is to create the best possible environment for them and to follow their interests – rather than leaving autistic people feeling they have to hide or “mask” their autistic traits to fit in with a neurotypical world.

What makes this complicated, however, is that social communication skills are one of the main things measured when someone is assessed for an autism diagnosis. The fact that this therapy boosted those skills meant that children scored lower on those parts of autism assessments, which in turn meant they didn’t meet the criteria for an autism diagnosis. In fact, the study shows that this therapy reduced autism diagnosis by two-thirds. It is worth noting that the numbers leading to this effect are quite small, but significant nonetheless.

That raises questions that should give us pause. The main concern for us in the UK is that support only follows diagnosis. Even if the therapy allows autistic people to have a better start in life, the system will need to change to ensure support is there if and when it is needed.

We also have to ask what else a child may miss out on if they go on to be diagnosed with autism at a later date. For many autistic people, autism is part of their identity. As it stands under the current system, delaying a diagnosis could mean they miss out on a level of peer support and understanding that they could otherwise benefit from.

Medical research studies such as this, for all their methodological rigour, do rub uncomfortably against the experience of being autistic. Autism is not a “preventable” condition that we can treat like other areas of medical research. As with many studies, the research paper itself can, and frequently does, use terminology that can appear insensitive and be open to misunderstanding or misinterpretation.

Combined with the need to for simplicity, this can lead to headlines that spread unnecessary fear and anxiety about the goals and impact of this work. It’s easy to see how, without nuanced discussion and in the absence of reasoned debate, the positive elements of the study could be overshadowed by the more problematic parts. It’s important we see both the good and the bad and that those commenting on science understand that any inaccuracies actively harm autistic people and serve as barriers to progress.

The inequalities autistic people face are unacceptable: reduced life expectancy, significantly higher rates of mental health problems and exclusion from work, to name just three. All are faced with very little support, unhelpful attitudes and frequently inaccessible public spaces. It’s clear that we need research that directly improves lives.

That means, despite its complexity, we can’t shy away from the kind of research that throws up challenging conclusions. It is only by questioning the status quo that we can find what works and what doesn’t, what’s appropriate and what’s not, what’s right and what needs more study. Talking about that research with humility, empathy and sensitivity will help us to ensure that the many autistic people in the UK and elsewhere inhabit a world that works as well for them as it does for neurotypical people.


Paradoxes of progress on autism
Quote:
James Cusack’s piece on the results of our new autism therapy trial points out some paradoxes of progress, and the need for ongoing conversation.

Contrary to any sense of “opposing” autism, it cherishes neurodiversity by attending to and understanding it, giving equal opportunity to these infants for an adapted and responsive social environment. The positive developmental outcomes we see are simply a consequence of getting this early communication right; the infant is able to benefit like any child from an adapted social environment. The children continued to be neurodivergent with developmental difficulties but these were more likely to be reduced below a clinical autism threshold.

The paradox is that this progress and developmental benefit might feel like a problem. First, families may no longer receive services for which an autism diagnosis is an entry ticket. This just highlights the perverse incentives in resource allocation, and the focus should surely be on a better system based on needs. We highly appreciate, too, concerns around autistic identity, but neurodiversity and the essential need for good adaptations to it remain. Maybe what really needs to happen as a result of this work is an examination of the very concept of clinical diagnosis itself and the way it is made.


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Jakki
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25 Sep 2021, 9:48 am

perhaps a little person has learned that hiding feelings and intent has been a successful way of getting her interests/ preferances met ?


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carlos55
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25 Sep 2021, 1:38 pm

Who else Cure seekers or anti cure ND advocates gets tired of the BS of NTs when discussing autism? Quoting an article originally posted by AsPartOfMe, the author states.

https://www.theguardian.com/society/202 ... -on-autism

Quote:
Contrary to any sense of “opposing” autism, it cherishes neurodiversity by attending to and understanding it, giving equal opportunity to these infants for an adapted and responsive social environment. The positive developmental outcomes we see are simply a consequence of getting this early communication right; the infant is able to benefit like any child from an adapted social environment. The children continued to be neurodivergent with developmental difficulties but these were more likely to be reduced below a clinical autism threshold.


I can only believe the author assumes all autistic people are Intellectually Disabled or he`s talking in a masonic language only assessable to NTs

We have the Childhood Autism Ratings Scale where 0-60 where 30-37 means the child is autistic 37 & above is severe autism (severely reduced lifespan & little to no independent life).

https://autism.lovetoknow.com/Childhood ... ting_Scale

This funny quote here:

Quote:
The children continued to be neurodivergent with developmental difficulties but these were more likely to be reduced below a clinical autism threshold.


So, in other words autism has been PREVENTED or CURED.

So why not just say so, all the semantics about still neurodivergent. How can they still be neurodivergent when they score 22 on CARS?

I would like a cure for my autism but I’m sure even Neurodiversity advocates get annoyed by this deception
Cure / prevent autism or keep autism either way cut the BS and speak the truth & give intelligent reasons.

Maybe this new treatment will spur a proper public debate to address the issue once and for all.


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25 Sep 2021, 10:33 pm

Also, I never understood arguing against a cure while at the same time arguing that a cure is impossible.


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25 Sep 2021, 10:35 pm

Random meltdowns always overtake rational communication, like having the internet play up during lockdown.

Every 16 yr old has to suddenly deal with unexpected loss of internet access and the subsequent frustration and withdrawal symptoms

After 15 min of irrational discussion it turns out she didn't want to be alone? the generation gap is yet another problem parents have. This generation of teens have MSN and google messenger/hangouts.

The irrational meltdown masks everyday teenage needs. Talking to babies isn't going to solve this.



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25 Sep 2021, 11:00 pm

cyberdad wrote:
Random meltdowns always overtake rational communication, like having the internet play up during lockdown.

Every 16 yr old has to suddenly deal with unexpected loss of internet access and the subsequent frustration and withdrawal symptoms

After 15 min of irrational discussion it turns out she didn't want to be alone? the generation gap is yet another problem parents have. This generation of teens have MSN and google messenger/hangouts.

The irrational meltdown masks everyday teenage needs. Talking to babies isn't going to solve this.

I still am not seeing how this negates learning to properly communicate with an autistic child in most contexts. No one said doing so would magically wave away the emotional issues that come with ASD, just that it's an overall useful tool when trying to teach them and understand them.

Though I guess the importance on that is just viewed differently when you live with ASD + experience the frustration of no one around you really putting the effort in to learn to communicate with you, VS being NT + already able to communicate with everyone around you, and having them not even have to consider how to communicate with you.


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I use he/him pronouns.

I like playing video games, watching cartoons and anime, reading, and cooking.

I have two cats, a rabbit, and a dog. I also enjoy learning + cataloguing information about different types of animals and plants.

Empathy Quotient: 34/80
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Autism Quotient: 36/80

RAADS-R: 169

CAT-Q: 153
Compensation: 57
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Your broader autism cluster (Aspie) score: 144 of 200.
Your neurotypical (non-autistic) score: 63 of 200.
You are very likely on the broader autism cluster (Aspie).


magz
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26 Sep 2021, 3:45 am

A meltdown pro tip: don't try to discuss anything during meltdowns. Offer comfort - that usually means leaving one physically alone, unless you know the person's other preferences.
You can go back to the discussion once capacity for rational thinking is regained.


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26 Sep 2021, 4:53 am

magz wrote:
A meltdown pro tip: don't try to discuss anything during meltdowns. Offer comfort - that usually means leaving one physically alone, unless you know the person's other preferences.
You can go back to the discussion once capacity for rational thinking is regained.


Even if I wanted to have a discussion it would be impossible during a meltdown. And, yes, you were right, she wanted to be left alone for a few hours. After Cybergirl blows our ear drums with her screaming she then does her own self-regulation using mindfulness techniques (breathing exercises) she uses herself.

At the moment she's quite chirpy as if nothing happened other than interrogating me why my DNS server is ok and her laptop isn't syncing with the internet provider. I find it annoying that wifi is reason for a meltdown. I mean what the heck are we supposed to do as parents, we aren't god.



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26 Sep 2021, 4:56 am

HeroOfHyrule wrote:
the frustration of no one around you really putting the effort in to learn to communicate with you, VS being NT + already able to communicate with everyone around you, and having them not even have to consider how to communicate with you.


It's a moot point anyway as this "Breakthrough" intervention is an "early" intervention. I am dealing right now with communication with a 16 year old.



magz
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26 Sep 2021, 7:45 am

cyberdad wrote:
magz wrote:
A meltdown pro tip: don't try to discuss anything during meltdowns. Offer comfort - that usually means leaving one physically alone, unless you know the person's other preferences.
You can go back to the discussion once capacity for rational thinking is regained.


Even if I wanted to have a discussion it would be impossible during a meltdown. And, yes, you were right, she wanted to be left alone for a few hours. After Cybergirl blows our ear drums with her screaming she then does her own self-regulation using mindfulness techniques (breathing exercises) she uses herself.

At the moment she's quite chirpy as if nothing happened other than interrogating me why my DNS server is ok and her laptop isn't syncing with the internet provider. I find it annoying that wifi is reason for a meltdown. I mean what the heck are we supposed to do as parents, we aren't god.
A technical issue is not your fault and I suspect Cybergirl knows it. Having your plans crossed out for an unexpected technical problem can be very disturbing. My husband is a grown up man and he can sometimes blow a short meltdown in such situations :lol:


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