low support needs does not mean NO support needs

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I know not all autistics consider their autism to be disabling, and I suppose it's fair that they get to define their own condition.

But for myself, I absolutely consider both my ADHD and autism to be disabling. Even though I'm low support needs, that does not mean NO support needs. I feel like because people see that I can clearly hold down a job, they assume that means I don't really struggle with stuff. And I feel like because I'm not visibly disabled, people will tend to pile blame on me when I eventually crash and burn after losing supports, rather than trying to sympathize. I think the only reason I'm not on the street is because I live with my mom

There's a misconception that having "support needs" means we require caseworkers or caregivers in order to leave our homes or function productively in society.

"Support" doesn't have to be provided by other humans. As we all know that level of service is difficult to find even if we have more needs, and most of us wouldn't want a caregiver following us around 24/7 anyway.

"Support" can mean we benefit from any of the following (and more):

- sensory aids like tinted glasses, ear defenders, earplugs, dental guards, etc.
- sensory / stimming items like fidget rings or other calming products
- assistive communication devices
- service animals or emotional support animals -- sometimes just in the home (not public)
- psychologists and other therapists for comorbids (depression, anxiety, EF)
- accommodations at school or work (extra time, quiet spaces for exams, softer lighting etc.)
- living with parents longer or having parents represent us past age 18

I didn't think you implied your mother is your caretaker. I empathise with what you're experiencing though. "Low support needs" doesn't mean "no support needs", and many of us have needs others can't or don't see. It's very easy for us to burn out when others assume we're not struggling, or when they don't take it seriously if we say that we are.

Thanks

I am currently talking with my workplace's HR about getting more accommodations at work, too. Mostly for sensory problems. I was able to get all previous accommodations just by talking to my boss (such as being allowed to wear noise reduction stuff), but I'm not sure how seriously I will be taken for my most recent needs without going through official channels.

My co-morbids seem to be more disabling than the ASD in my case. Agoraphobia has become top of the list with me, which is the only thing I think I need to inform work about, as there is one task that involves going off the premises and it's the only task I find daunting because of my agoraphobia (it involves going out in public, dressed in a way that makes me stand out and get stared at).

Also my anxiety is high, higher than the average Aspie I think. So I automatically start overthinking things and can't move on until I have sorted it out (gotten reliable advice, reassurance, facts, comfort, a solution, or sympathy). Well I can move on but the thought will weigh me down and distract me from thinking straight about more important things. But it doesn't affect my daily functioning or communication.

I think communication is important and the more your communication capabilities are affected (even just temporarily) the more support you may need. My communication abilities are never affected ("never" is the keyword here and is not exaggerated), and I think it helps an awful lot to get through life. I'm glad I don't experience autism shutdowns. That must be quite scary at times.

There just isn't enough support to go around I guess. Back when I got support in school, nobody seemed to know what to do to help, but that was in the 90's so there wasn't a lot of awareness even among professionals. Now my autistic wife and adult autistic kids all chip together to help each other. I'm sad because as much as I try and support my kids, they need more and I can't seem to get them that help. All I can really do is let them sleep as long as they need to recharge.

Is there an official, written definition of "Support" as it relates to Autism Severity?

With Respect to Me...
>- 1994 - I turned 40 and Asperger's was first added to the DSM.
>- 1997 - I retired from my "side" job.
>- 2011 - I retired from by primary job.
>- 2013 - The Autism Spectrum replaced Asperger's in the DSM.
>- 2019 - I first suspected and then got my diagnosis (age 64).I long suspected something, just not Autism.
My diagnosis is Autism Spectrum Disorder, Level 1 (Mild).
There was also a note that I satisfy the criteria formerly associated with Asperger's Syndrome.
Now that we know what to look for, my bride and I both think the diagnosis is correct.

But, I think for apparent reasons, most of my life I was not diagnosed. I muddled through as best as I could (and I was unhappy a lot). People just thought I was quirky (they might've used less polite adjectives). I got some adjustments to make me more comfortable but I did not get accommodations because of a diagnosis.

I do not think in terms of I got "support" so much as I got "tolerated" and/or "lucky".

P.S. I was in IT, a career field where it is not unusual for good employees to be unusual and sometimes suggested as a good career field for Aspies.

I get it.

I am Twice Exceptional (2e). Think the absent-minded professor. Mostly I was admired or jealously scorned. Either way when I had a meltdown for something "simple" there was little understanding or help. I write that in the past tense b/c it feels better, but it continues in the present. I'm figuring out how to assert myself in a productive way. In today's world it's hard to stay in a "Can we..." zone without ending up in a defensive "I can't..." zone.

The "invisible" disability applies to me --- a person looks at me, I seem capable, they dismiss my needs and requests outright. My (NT) sister resented me as she saw my successes and had no idea --or refused to see-- how much I struggled and suffered. People don't want to see it, don't want to believe it- they can't relate. My (NT) dad, who is generally a sensitive caring person, considered me lazy for not cleaning well, rather than congratulating me on my amazing efforts to work full-time and care for children (leaving little energy for anything else). Come to think of it, my (ASD) mom never judged me that way; she'd simply helped me clean up. Apparently she understood.

My husband is my "support" person. It's mutual support: I fund the household and he runs the household, for the most part. I have moments of relaxation, but overall the concept is alien to me. To relax would be amazing... but there are demons there, related to this very topic...

The more stress I am under (sensory, mentally), the more support I need.

It's kind of interesting how support needs/support levels generally replaced functioning levels and yet the same misunderstanding happened.

People would think someone with high-functioning autism didn't need any support because 'they're high-functioning', just like people would think someone with low support needs doesn't need any support because they're 'low support needs'.

Let's see...
One would class me as 'low support'. Solely because I can blend and pass, I also don't have any trouble being on my own.
Or that I don't have any academic issues at all. I can survive university levels alone if only I have the financial support for that.

However; it's like a color wheel than a gradient like levels do.

Minimal to no support in my case: sensory issues (no serious intolerance/insensitivities), mental health (unless it's hormonal), learning and studying (no learning disabilities), self care and self help, gross and fine motor, independent navigation in public, etc...
It's something I can definitely do alone, or don't have to think about.

Moderate to minimum: communication, language, socialization, productivity; time management, decision making (specifically when working for someone), prioritization, change and transitions...
Sometimes I can do alone and do it with effort and be mindful of, sometimes in need of intervention (non-professional).

"Moderate" and yet in absolute need: stress management (I need something beyond just the ability to relax), anything related to emotional regulation alone.
Sometimes in need of nonprofessional intervention to manage it, and possibly in need of professional help.

I don't have a 'severe' need. Unless something must've gotten really wrong.
Nothing that says 'always in need of X dependently' or 'in need of X professionally and in long term'.


It's like...
Yeah, I can make do alone and I don't struggle with a lot of day to day independence.
I can do chores, clean, cook, do laundry, run errands on my own.

But not much whenever someone's involved, or if there's a change outside my control -- like how I don't know which task to do first if I want to save time, or how to say stuff for others.

Or that whenever my body changes every other week.

If I get hormonal, my behaviors change, my mood changes, how I react with I consume and exposed to changes.

Yeah anything mental health related would just pass, but that doesn't change the fact that I'm going to be a fricking nuisance for weeks every several weeks.


Sounds like I need more support as a female autistic than just being an autistic alone.

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