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Am I really disabled? Internalised able-ism - insight shared and sought about beliefs about ones own and others capability :-)

Phased

Hi All

Recently I've been struggling to analyse what "reasonable adjustments" for my late diagnosed ASD level 1 are appropriate for me from a work setting.

This has spun off and intertwines with what reasonable adjustments I ought to make simply in my daily life.

One of the lovely people here recently shared a website with advice on moving beyond burnout.

Autistic Burnout Recovery: How to Build a Recovery Plan - Neurodivergent Insights

In this I encountered the term Internalised ablism for the first time.

A quick definition is

"Internalized ableism (sometimes discussed as internalized stigma) refers to the process by which individuals absorb negative societal messages about their own identity. For autistic people, this can mean adopting beliefs that autism is inherently “wrong” or “deficient”—ideas that stem from a society that often values neurotypical traits over neurodiversity."

I straight away found this a very useful concept to apply to my analysis of just why it is so difficult for me to recognise and make adjustments to get on better with being autistic.

I'm one to check sources and evidence if I can - albeit these days have grown to trust general AI to do it for me.  So this is what chatGPT says about research evidence for it in those with autism:

"Summary

In summary, evidence from both quantitative and qualitative studies supports the existence of internalized ableism among autistic individuals. This internalization of negative societal messages is linked to:

  • Increased mental health challenges (e.g., anxiety, depression).
  • Behavioral outcomes such as camouflaging, which, while sometimes adaptive, can be psychologically costly.
  • Challenges in forming a positive identity as autistic individuals navigate a world that often holds devaluing views of neurodiversity.

As research in this area continues to develop, many experts stress the importance of shifting societal narratives—from deficit-based models to those that affirm and celebrate neurodiversity—to help reduce the internalized stigma experienced by autistic people."

For me this is about recognising and acting rationally upon internalised beliefs and prejudices that form my expectations about myself as being more capable than someone with a lifelong developmental disability such as autism can reasonably be expected to be in certain respects.

In the day since coming across this my personal "deep dive" has thrown up some dark aspects of my reaction to disability in others that I have had in the past and do still arise today.  I remain ashamed about this.  The first time I encountered the term "neurodiverse" for example I had a pretty hostile personal reaction to it...   This sort of attitude extends to the extent that my career has been about helping people "get better" from disability.  To perhaps be nice to myself on this I am at least aware and sensitive enough to work on balancing the bias out when I see it in myself about others.  Oh, and some disabilities it is possible to get better from and with :-)

So much of this seems to be about social advantage or disadvantage - including how people might "game" the system to take unfair advantage of others in society for selfish goals.

How much society is taking from us and truthfully how able one is to give to seems to be linked to capability pretty deeply.

How best for society to optimise capability for everyone (does it really want to) ?

I'm coming around to the realisation that pragmatically society is not adequately equipped or prepared to do the work for me in working out what reasonable adjustments I need - no matter how reasonable it might be to expect it to be.  

I will need to self advocate for this - it's just so damn tricky...

Thoughts anyone?

All the best :-)

Parents

  • I do not consider myself as disabled in any but as a legal way to protect myself against potential discrimination. My autism does not prevent me from doing anything I really have a desire to do, but it can make things far more difficult for me to accomplish than any neurotypical experiences.

  • in reply to Martin

     How do you reconcile finding things far more difficult to accomplish and not considering yourself disabled?

  • in reply to Phased

    Simple. I do things, therefore I am not disabled from doing them. Disable, means, "To deprive of capability or effectiveness." Making things more difficult is not the same as disabling.

    I know that I am a grammatical pedant, but that is how my brain works

    As an example, I found going into large crowded halls to take important exams hugely difficult, my anxiety would be sky high. I had what I now realise was a panic attack at the start of my first A-level paper. However, after a short delay, I finished the exam and got a good grade. My autism did not disable me from taking exams, or doing reasonably well in them.

    I have a very stoical mind-set, I have never allowed my discomfort, sensory or psychological, to impede me from doing what was necessary to achieve the things I considered important to me. Have I paid a price in exhaustion and anxiety? Undoubtedly, but I consider that it was worth paying. The depression and anguish from not achieving things that I wanted badly, would have been much worse to live with.

  • in reply to Martin

    Understood - I employ the "substantial and long term adverse effect on a person's ability to carry out day to day tasks"  definition.  Under which, whilst the individual may be able to do things the  consequence of their experience (e.g. exhaustion and anxiety) is substantial and this ls a long term adverse effect.  Semantics aside, I am pleased that your analysis works for you :-)  

Reply
  • in reply to Martin

    Understood - I employ the "substantial and long term adverse effect on a person's ability to carry out day to day tasks"  definition.  Under which, whilst the individual may be able to do things the  consequence of their experience (e.g. exhaustion and anxiety) is substantial and this ls a long term adverse effect.  Semantics aside, I am pleased that your analysis works for you :-)  

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