Scoots & Friends: Disability Thread

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theGECK
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Re: RUSP: Rainbow Unicorn Sunshine Palace 3: Getting Better Every Day

Post by theGECK (?) » Fri Mar 09, 2018 2:02 pm

I'm not sure if this is the right place to ask this, but I know that in here people talk about their mental struggles, so I hope this comes across as in good faith and loving. I know that there are people where who have been diagnosed with Autism, and I guess this is a question mostly for them, but also for anybody who has received a diagnosis from a licensed practitioner for something mental, not physical.

My goddaughter's mother is trying to decide if she wants to have my goddaughter (I'm abbreviating that to G from now on because that's too hard to type every time) tested for Autism Spectrum Disorder. I guess there have been a lot of things happening at school, but G struggles with a lot of social things, especially facial expressions. The thing that best sums that up for me is when I was reading a book to her and her sister when we asked the question about the person in the book, "What do you think he's feeling?" Her sister answered, "He's happy!" while G responded, "He has a new shirt." We then walked her through looking at the person's face, seeing which way his mouth moved, and then she exclaimed, "He's smiling, so he's happy!" Her life has been full of these little things that has caused a lot of problems with friends and especially groups. She loves math and displays behaviours which I've been told are frequently displayed by people who are diagnosed as on the ASD (is that the right wording, on the ASD?).

Her mother recently mentioned "I don't want to be those 'I need to keep digging until I find a diagnosis parents'....we all know she has issues, is the label that important for her?"

I think the question I'm asking here is people's opinion on if a diagnosis was/is beneficial to have especially as a young person, what the benefits and drawbacks are, if you didn't get diagnosed until later in life what you think might be different if the diagnosis had happened earlier, etc. Again, sorry if any of this came across offensively, I'm just trying to figure a few things out and get people's opinions and experiences.

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Re: RUSP: Rainbow Unicorn Sunshine Palace 3: Getting Better Every Day

Post by Momo (?) » Fri Mar 09, 2018 4:44 pm

We used to have a disability thread, but we don't currently.

Personally speaking, I would rather have known much sooner in my life. Having a diagnosis gives me a much better sense for identifying my barriers, versus just stumbling along and "not quite getting" certain things. It also helps explain the source of a lot of my mental health problems, and past issues with friendships and relationships. I've been hitting invisible walls all my life, and getting the diagnosis at such a turbulent time has been pretty emotional.

How the label will affect her depends a lot on the quality of the care and how her family uses that information. Labels are dangerous, in that there are things she may struggle with, and eventually master. And it's easy for people to get caught up in the labels, assume it's just something she can't do, and not challenge her at all. The focus of her care should be to identify and nurture her strengths, and to equip her with tools to manage her weaknesses with the ultimate goal of independence.

If it's testing she can reasonably afford, and you're confident that the diagnosis or elimination of ASD will be a constructive influence, it may very well be worth investigating. However, I'm not American, so I can't speak to how the diagnosis will affect health insurance premiums or access to coverage.

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Re: RUSP: Rainbow Unicorn Sunshine Palace 3: Getting Better Every Day

Post by Perrydotto (?) » Fri Mar 09, 2018 6:19 pm

Momo said basically everything I could have.

Personally, I found the label comforting. I can still choose who I tell about the diagnosis, and it has opened up paths for getting help (health/financial) that I would not have been able to get otherwise. It helped me understand myself and my issues better, and learn things accordingly. It was endlessly frustrating to me to sense that I wasn't "right", that there were things I just wasn't "getting" VS all the other kids that clearly did. Invisible walls is a very good term for it. Knowing that there was indeed something up with me and that it could be understood and improved on was a big relief.

I fully agree with what Momo said - A diagnosis is a very valuable tool and piece of knowledge, but it should never lead to treating a person with kiddie gloves. Listening to the needs and issues and adressing those can be done without turning her into the "disabled one".

Being autistic is far from a death sentence, but knowing where the issues are and how to nurture the strengths can make a lot of things in life, especially once puberty comes in, MUCH easier. I'm also not from the US so I can't comment on that but personally, I would say that with the right approach, the parents should look into a diagnosis. Equipping your kid with the right tools to make the most of their strengths and weaknesses is never wrong, IMO. I was diagnosed when I was 16, so not as late as it could have been, but I still wish it had been earlier.
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Scoots & Friends: Disability Thread

Post by Perrydotto (?) » Fri Mar 09, 2018 11:39 pm

Momo correctly noted that we don't have a second version of the Disability thread, so I wanna fix that.

Post about disabilities here, your experiences, questions, etc. - All sorts of discourse is welcome as long as you stay respectful and understand that experiences can and will differ. No two people are the same, and no two disabilities are the same.
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Re: Scoots & Friends: Disability Thread

Post by Kronos (?) » Sat Mar 10, 2018 11:07 am

I was diagnosed with ADHD (it's on the spectrum) during middle school (so maybe around 13 years old) after an incident to this day I'd rather not talk about. However, it explained a LOT about the kind of troubles I'd been having in grade school up to that point, so it helped me get through the rest of my early education years. It's been something I've been struggling with - especially recently after my anger issues turned out to stem from it as well, so currently undergoing a trial run of new medication to see if it helps.

I agree that getting her tested for Autism asap would be a good idea, as that way what she has can be identified and treated appropriately. Anything on the spectrum is a unique case, hence why it's a spectrum, but the sooner you can get professional support the better. I do wish I'd been diagnosed in elementary school (parents thought my hyperactivity would be cured through a year of jazz dance class...that was an interesting year lol) because it would have made my life easier.

The label itself is absolutely unimportant beyond simply being the term for what condition she has. The important thing is identification of the problem so a solution can be found.
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Re: Scoots & Friends: Disability Thread

Post by Inkie (?) » Sun Mar 11, 2018 8:26 am

Seconding what was said. Diagnosis was, in my case, extremely helpful. I'll also add that if she does get a diagnosis, it's important to look into autism self-advocacy groups to get information from autistic people about good, helpful professionals in your area. Never give her ABA.

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Re: Scoots & Friends: Disability Thread

Post by Perrydotto (?) » Sun Mar 11, 2018 12:06 pm

Inkie wrote:
Sun Mar 11, 2018 8:26 am
Seconding what was said. Diagnosis was, in my case, extremely helpful. I'll also add that if she does get a diagnosis, it's important to look into autism self-advocacy groups to get information from autistic people about good, helpful professionals in your area. Never give her ABA.
To be more concrete, The Autistic Self Advocacy Network is a great start for contacts. They have a page for useful resources and a directory of their chapters in the world.

In general, any group that focuses on empowering/supporting autistic people is a pretty safe bet. Avoid any group that discusses finding a cure or doesn't have autistic people involved directly. Autism Speaks is the prime candidate among those. They tend to have the biggest marketing budgets with very little of their money actually going into useful work and specifically prey on the fears of parents of autistic children instead of teaching empowerment and a smart view on what autism is. They have no autistic people actually in charge or directly involved with those in charge. Autism Speaks has shifted away from the most hardcore pandering to anti-vaxxers, but used to be big about that as well and still cooperates with groups "fighting for a cure", even though autism is not a disease. Groups like these tend to do more harm than help, and regularly talk over the actual needs of people with autism.

Related to that, ABA is Applied Behavioural Analysis, which has the stated goal to teach kids with autism how to behave more in life with society's expectations, but very often does so by using very intense drill-like regimens that teach kids to never display any kind of autistic behaviour. The therapy is controversial, to say the least. Here, too, parents are lured in with fearmongering and a very skewed view of how autism works. Pain punishments, including electro shocks, are sometimes used to discourage undesired behaviour.
ABA used to be considered the gold standard, but that was at a time where autistic people were put into asylums and received no treatment whatsoever. Today, there are other options, and asking at your closest ASAN chapter or related group is the best way to go.
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Re: Scoots & Friends: Disability Thread

Post by minty (?) » Sun Mar 11, 2018 1:53 pm

Oh do I ever wish I'd been diagnosed earlier. I was about 25 when I was. At that age, you're too old for anyone to want to help you. If you get it young, you can seek out places to help you with things such as job interview skills and so on. I say that as someone who was not only diagnosed late but got thrown around by the system for years because a doctor quit and nobody told me. So I went years without a job, and it was only through sheer luck I got with a local program that helps people like me get jobs at any age, instead of cutting the age off young.

I can understand not wanting to go diagnosis digging, but it's important to find these things out as soon as possible. I often wonder what my life would be like if I were diagnosed when I were still in high school or college, considering all my post-secondary education was a miserable failure. I'm not trying to sound like some ghoul warning you to stay away from the graveyard, but please don't ignore these things.

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Re: Scoots & Friends: Disability Thread

Post by Mr. Big (?) » Fri Aug 24, 2018 11:53 am

This showed up on my Tumblr dashboard that I felt was worth sharing. An artist who worked in animation is suffering from Myalgic Encephalomyelitis (aka Chronic Fatigue Syndrome), a disease that causes severe pain to the entire body (to the point that light and sound can be painful). Very little is known about the cause and treatment because it practically gets zero research funding.

There's a documentary about it called "Unrest" by Jennifer Brea, who suffers from ME. If anyone has Netflix, might be worth a check.

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Re: Scoots & Friends: Disability Thread

Post by Bigdog (?) » Fri Apr 26, 2019 1:13 am

Saw this thread and it touched me right in the disability-inclusion feels. Regardless of your political stances/who you're stanning for, I hope we can all agree that this kind of engagement and reaction is really cool

(click through to the thread for the replies)


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Re: Scoots & Friends: Disability Thread

Post by Ragnar (?) » Thu Jan 09, 2020 5:39 am

Talked to a therapist the other day and she told me I might have mild brain damage from having a lot of seizures when I was a kid. This would explain some things I mentioned, specifically a few cognitive and motor issues I've wondered about for a while now. It looks like it's hard to test this, though. The issues could also be from the mood disorders. I may never know for sure.

My sister has confirmed brain damage, but from war. She mimed a high five when I mentioned it in person and said something like, "What's up, welcome to the club."

I really wish I knew for sure, but it's an interesting theory. Brain damage! Literal brain damage. Somebody who knew me as a kid recently asked me, "what happened to you?!" when she saw just how shitty my memory can be, not unkindly, but with genuine confusion.

Said therapist also wants me to talk to the psychiatrist to see about more meds, but I think that's a different thread. My brain does not appear to be entirely standard issue, is all I'm saying, and for the record, I'm at peace with it and see nothing to be embarrassed about. Not that it was ever rational, but I expect I won't be feeling stupid nearly as often now.
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Re: Scoots & Friends: Disability Thread

Post by diribigal (?) » Fri Oct 02, 2020 9:27 pm

Not sure where else to post this, but I got a hearing aid today. I'm still getting used to how it processes external sound (and it may need to be adjusted), but when audio is streamed to it over bluetooth I can actually make out speech in that ear pretty well for the first time in like a decade, which is pretty nice. I just wish the discussion/videos/etc. online weren't all directed towards much older people...
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