Published on 12, July, 2020
Collectively as autists, and as a wider society. We need to stop assuming/pressuming other people's ability to function and support needs. Especially online. We are all strangers. Nobody here really knows what it is like to live our lives when we step away from the computer. What we tell people here is just snippets and the basis of absolutely nothing anyone else can say or prescribe with anything other than a faux qualification. Especially the assumption that someone's ability to communicate in a text based format means they do not go or are not in fact nonverbal irl, or has any bearing on the other areas of their life.
That's really it. That's the post.
This is interesting and also emphasises the point that especially for hidden disabilities like ours, post-diagnostic autism assessments following an autism diagnosis are vital, to both assess our level of autism and our support needs going forward, in order to access appropriate support - too often, especially in relation to mental health issues and in hidden disabilities like autism, the “one size fits all” approach and mindset is used and applied because the mindset and attitudes are that mental health issues and hidden disabilities like autism are seen as (somehow) “not real” and most people will simply not stop making incorrect and judgemental assumptions about our hidden disabilities and mental health issues, which is already the poor relation when it comes to NHS and other funding - this is clearly a set of mindsets and attitudes that must change if we are to have a decent quality of life in a society that proports to be “caring” and “compassionate” - recent news reports about Labour wanting to “privatise the NHS” and many similar reports clearly show us that we have a long way to go, as there are strong parallels with the struggles for LGBT rights and equality
Hi, thanks for your effort to answer my question! Just to check my understanding as I cant access the links, was your original comment saying your AF (using an abbreviation in the hope it wont get flagged) is lower than your IQ (and you would be perceived as needing less support due to a high IQ)?
Sadly the National autistic society or people here believe 'adaptive functioning' to be an abusive or spam like. I tried to copy and paste several times straight from Bing chat. It didn't work. In the end I had to copy and paste into notepad before copying and pasting here. There was no maliciousness intended on my part. Being falsely accused is a major trigger for me.
Using Bing chat
Adaptive functioning refers to the ability to manage the demands of day-to-day life1. It includes areas such as self-care, travel, shopping, cooking, fine motor skills, and communication1. In the context of autism, adaptive functioning is a fundamental aspect of the phenotype associated with autism spectrum disorder (ASD)2.
Research has shown that individuals with autism spectrum disorder (ASD) often exhibit significant impairments in adaptive functioning, particularly in social skills3. These impairments can impact their ability to meet the demands of everyday life4. For instance, they may learn some of these skills at a slower rate than their non-autistic peers1.
A recurrent finding is that there is a pronounced discrepancy between the level of cognitive ability and adaptive functioning, especially among higher-ability individuals4. This means that even though an individual with ASD might have a high IQ, they might still struggle with adaptive skills like social communication or self-care4.
Key factors associated with adaptive functioning in ASD include age, IQ, and levels of ASD symptom severity4. Older age, lower IQ, and more severe social-communication symptoms are associated with lower adaptive functioning4. However, sensory ASD symptoms, repetitive and restricted behaviors, as well as symptoms of attention deficit/hyperactivity disorder (ADHD), anxiety, and depression, were not found to be independently associated with adaptive functioning4.
These findings suggest that it is the core social communication problems that define ASD that contribute to the adaptive function impairments that people with ASD experience4. Therefore, interventions targeting adaptive skills acquisition should be flexible in their timing and intensity across developmental periods, levels of cognitive ability, and take into account social-communicative ASD symptom severity4.
Learn more1
aims-2-trials.eu2
mdpi.com3
link.springer.com4
docs.autismresearchcentre.com5
pearsonassessments.com
I suspect that it goes beyond mere ignorance about autism in particular and mental health issues in general, both in real life and online - it is a point blank refusal to see and understand our needs and I’ve seen the same things going on in the gay world, having come out as gay in my teens in the 1980’s despite the progress that has been made with LGBT rights and equality in recent decades, there is still a lot of parallels - many people do make assumptions and are very judgemental discriminatory and dismissive - they have a certain mindset and attitude, a set of preconceived notions about us, where they believe that our condition is somehow not a real condition and all imagined
Hi, I’ve not seen the phrase ‘adaptive functioning < IQ’ before, would you mind explaining what it means?
Nobody sees the adaptive functioning < IQ when I'm posting online. I occasionally mention it. It falls on deaf/daft ears for the most part.
Bees, I've debated how to reply to this.
I was glad to see you post and I hope you are OK.
I also respect your insights so a bit more clarification/context would be good if you want to.
The only thing I will say with regard to functioning is that there was a discussion here recently about how those of us in relationships and/or with friends make those without feel negative about themselves, but then I thought, there are those like me who have done this one thing with some success, after decades, but who didn't achieve the other things NTs value such as studying for a degree and having a career etc (which the people not in relationships may have done).
I suppose everything is relative.
🐝 Bees 🐝 (they/them) #NothingAboutUsWithoutUs #StopTheShock said:We are all strangers.
I'm not sure I agree with this.
Hi Bees
I'm sorry but I'm not sure I understand what you are saying.
You are correct that none of us know what anyone's lives are really like, we only know what people put in their posts, so we can't know what their needs are unless they tell us.
We have to be kind to each other, if we make mistakes. Many of us can get anxious about doing the "wrong" thing in our offline lives, so this should be a safe place where we forgive each other if we misinterpret or misunderstand something.
Because we are all different, advice which is unhelpful to one person, might help someone else.
Great post Iain.
It's one of the reasons I often ask questions, it's not out of spite or rudeness but because it's often hard to know what the poster wants/needs from a reply. Sometimes when people ask for help or advice someone may come up with a completely different perspective on a issue that actually helpful, even though at first it might seem odd or dismissive. I think we have to be open to being misunderstood when we post on a public forum, it's great to have a place to emotionally vomit sometimes, but you've got to accept that it will give some the ick.
I would like to add, is there a way to stop your moving GIF? I'd like to respond more with your posts but the constant fluttering and moving makes it quite difficult to read the posts :( I tend to avoid these as it creates some stress... x
While I agree to mind unsolicited advice, this IS a forum specifically for autistic and family members of autistic individuals looking for advice. I think that context is not a small detail. :)
No one can escape bias, hence critical thinking is invented. And while humans are each unique, we have core similarities. The ability to differentiate is a learned skill which some have a potential for.
In my experience, my ADHD friends relish their unique-ness. And my Autistic friends tend toward what connects us / makes us similar. This appears to be one of the soft polarities of the two, but Autistics don't speak 'neurotypical' and this can have a great impact in desiring inclusion, while, as Jung pointed out, it is the collective Language which creates the feeling of being too similar triggering a desire to hide and pretend. So there is that subtle difference.
We all need anecdotes from time to time. If philosophies didn't ring true to most, or the use of a band aid didn't suit a momentary purpose, these wouldn't exist.
That’s ok, that’s the entirety of the purpose of this space, just post when you want or are able to.
🐝 Bees 🐝 (they/them) #NothingAboutUsWithoutUs #StopTheShock said:We need to stop assuming/pressuming other people's ability to function and support needs.
This is a great idea in principle but without making some assumptions it becomes incredibly difficult to offer advice, have a conversation or even avoid offending some people by being in the same place as them.
If someone posts "how to I get my autistic teenager to stop farting at the dinner table" in the forum, do we offer advice or spend 20 posts trying to establish if they have:
If I make any assumption about their ability to function or process advice then I could trigger them or offend them.
It becomes incredibly difficult to try to work out what functions a person can or cannot work with in the absence of a complete disclaimer from them, and often they will not disclose this until something triggers them.
I've run afoul of situations like this when I'm trying to offer advice then end up being attacked because I accidentally triggered someone when offering advice that would normally have been entirely appropriate.
So in conclusion - unless people are willing to give advance warnings of their needs in every interaction then I don't think this is viable in the real world. There would be so much reading to do before responding that people would lose interest or be afraid of accidentally offending someone.
We are such a disparate collection of issues and triggers that this looks like it will always be an issue for us.
If you have a solid idea on how this could work then I would love to hear it.
Only on and off tbh, I've still got a lot going on irl. But good to see you're still here too. :)
Good point, the distinction in terminology is important.
Boika said:It's better to use the term non-vocal as people who don't speak can still use words
Or nonspeaking/minimally speaking.
https://neuroclastic.com/on-using-nonspeaking-minimally-speaking-or-unreliably-speaking-over-non-verbal-nonspeakers-weigh-in/
Thanks for pointing this out! Good to see you posting again.
Yes, agreed. This text based communication is very different to how I present in a face to face situation, people also treat me differently face to face.
It's better to use the term non-vocal as people who don't speak can still use words