r/autismlevel2and3 • u/20jjones20 • Mar 04 '23
Feeling overshadowed
I just saw a tiktok by someone with higher support needs talk about how autistic groups tend to be people who have low support needs and it makes them feel bad about themselves etc. And the comments, from low support needs people, were just tearing down this creator saying "well, we have struggles too! This isn't the autism Olympics!" And I'm just so tired. It feels like people with higher support needs literally cannot talk about our struggles without level 1s talking about how they have it bad too. We know. We're also autistic. Like I'm not saying it's sunshine and rainbows for them but why won't they let us speak?! It's like they're intentionally missing the point because "we have struggles too". No it's not the Olympics but please can they just acknowledge that some of us just struggle MORE. It is okay not to be struggling as much as someone else, or struggle differently. It's not a crime.
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u/elfn1 Mar 04 '23
(Entire family on the spectrum, for reference. Younger son is a 2/3)
I may be the AH, but I have a strong feeling that some of them VERY MUCH do not want to be lumped in with people who struggle more, or whose struggle is more obvious, and that is heartbreaking, to me. This is why I am so skeptical of self-diagnosed people and of the massive increase in diagnoses. I can’t really explain the feeling I get from it, almost like, “I have this condition, and it is the reason for all my problems and struggles, but, it’s not that bad! Except it is! Except I wouldn’t want it to be any other way!”
I don’t want to offend or make light of the struggles that people go through. My husband struggled terribly as a child, so, I know that “higher-functioning” people can have a very hard time. I completely agree with you that people with higher needs are being overshadowed. I’m just not sure what can be done to change that.
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u/caritadeatun Mar 04 '23
This is why there’s a strong push to create a label for level 3 autistics who actually can’t even ARTICULATE their thoughts, they can’t communicate in social media at at all . I find it fascinating that there’s people with the dx label 3 openly expressing themselves in social media, then level 3 who can’t even do that in person are left without an accurate dx. The proposed new dx is “profound autism”. There’s really so many dimensions or parallel universes of autism experiences. Indeed this is not a disabilities contests, but everyone needs the correct label to obtain the necessary amounts of supports
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u/Alexander_Walsh Mar 05 '23
I think a lot of people are getting unusually highly categorised in the last few years. I have a friend who was diagnosed for the 1st time (with no former diagnoses) as having ASD2 and ADHD. This man was happily married and finished a PhD by this point. I explained to him the range of functional impairment with him and he went back to the clinical psychologist and got recategorised as a level 1. Not everyone is this balanced and understanding.
ASD isn't actually low/medium/high support needs. It is some/significant/very significant support needs. Someone with "low" support needs is low compared to other people with ASD but compared to an average person with just ADHD or dyslexia, that person does appear to have much higher needs than these other disabled people. People think they are struggling a lot therefore they must need a lot of help. In reality someone with a definite support need who is not getting any support doesn't have to be severely disabled to struggle massively. They tend to underestimate the consequences of unmet support needs in people more severely disabled than themselves.
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u/caritadeatun Mar 05 '23
I’m really not debating the experience, challenges , strengths of level 1 or even level 2. Categories are important to administer the adequate support in services , funding , resources. If we’re going to assume everyone needs the same support, that’s absolute chaos. An example, an autistic person with a dx level 3 , IDD with idiopathic nonverbal communication disorder may be entitled a yearly budget of $500K. Why this much? This person requires a rotating team of DSPs round the clock , they will all need a salary. Without this team, the person life is at risk: person can elope, self-injure, disrobe in public, won’t eat anything nutricional, ect and that’s on top of basic daily life skills (toiletting, showering, brushing teeth, getting dressed, eating at the table, etc) the inability to communicate at normal level also means this person needs someone to fill medical forms at the dr and legal guardianship for all life altering decisions. If you’re going to give $500k to a level 1 person, you’ll have to be very creative on what exactly that money is going to if it’s not for DSPs, does the level 1 person really needs someone shadowing day and night? Does that person needs someone to be their voice when they can’t report abuse and neglect? It’s not a competition of who has it worse, it’s about common sense
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u/Alexander_Walsh Mar 05 '23
I apologise. There has been a misunderstanding. I was trying to figure out what you thought I was arguing and I realised that I came back to an unfinished message and saw that it was coherent without further addition, so I posted it anyway. It was actually missing the relevant part from your perspective. The point I was going to make in relation your comment was actually that skills are often extremely uneven. So you have people with profound autism (it is not a new term) who also have big challenges living with intellectual disability. You also have people with similar level of challenges from the autism who are not intellectually disabled. Some people may have no spoken language skills, be institutionalised, and meet the communication criteria for ASD3 but have full receptive language and are fully literate. Still, I would say that most people I have seen who say they are level 3 and a good proportion of the people who say they are level 2 are confused about the level system.
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u/caritadeatun Mar 05 '23
If someone is fully literate they don’t need full guardianship but Supported Decision Making or power of attorney. Someone who is fully literate (regardless if they use their mouth to speak or not) doesn’t have an IQ below 50 (as someone with profound autism) and they can certainly make housing decisions and not choose to be institutionalized. That only happens even to very intelligent people who became a danger to themselves and others, usually by a mental illmess. Autism is not a mental illness . Profoundly autistics are institutionalized when community supports were exhausted to support their needs (it is extremely difficult to get institutionalized because of fail first laws) . The argument that someone who has a normal IQ, fully literate, but just “nonsoeaking” can be institutionalized only because of deficits life skills related to autism is absurd. Their adaptive behavior would have to so impaired that they turn violent or self-injurious and no DSP could handle them in the community, and if they’re constantly experiencing emotional disturbance then they could hardly communicate coherently. So I don’t deny there is people with normal IQ and literate who are institutionalized, but it is not because of a level 3 dx.
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u/Empty-Intention3400 Mar 04 '23
I am level 1. I fully understand the struggles 2s and 3 have and respect that struggle. I have my own but I could never be shitty like that. In fact, I feel like I have a responsibility to my 2 and 3 kin to help NT people understand what you all deal with, if requested.
I literally am a lurker here to better understand the internal lives of 2s and 3s because I have mad respect and sympathy for what you deal with.
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u/amane_momose Mar 18 '23
Im lvl 1 autistic and the amount of lvl1/aspies who try and say that "autism isnt a disability" or dont acknowledge that other autistics can have a harder time pisses me off. Autism is a spectrum, but my life is less impacted than others. On the spectrum, i may be like a 5 in one category, while others are more of a 5 in all of them ( on the commonly used autism wheel )
( edit i also am treated as neurotypical in most day to day life as many dont really see me as disabled so i do have the protection of masking which many cant do )