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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 :-)

  • I don't like thinking of myself as being disabled, just because I've always had a strong desire to be independent and always tried to avoid asking for help, and also because it makes me feel a bit fraudulent because there are others far worse off than me. But I have no negative associations with disability and see it as a difference rather than a deficit.

    Autism is classed as a disability, but I feel that it's mainly our society that disables us. When I'm in my home with just my ND partner, autism does not affect me. I'm not anxious, I don't have communication problems, I can indulge in my special interests without judgement, I don't have to do eye contact (we can have long conversations with no eye contact at all) and I rarely have any sensory problems as it's usually fairly quiet and I can have the blinds and lighting set as I want them.

    The problem with expecting society and our work places to make accommodations is due to the double empathy problem. Non autistic people cannot understand how we think and feel because their brains work differently to ours. Their brains filter out unnecessary sensory input so they don't get overloaded, so it is difficult for many of them to imagine what sensory overload is like. That doesn't mean that they shouldn't try to learn, but we have to take into account that they are different and it's often difficult for people to change their perceptions.

    When I requested adjustments at work, I explained that I had sensory issues and was specific about what was causing these. I was lucky in that it was possible for my needs to be accommodated, but it's not always easy - sometimes the best that people can do is get an agreement that they can use headphones and maybe wear tinted glasses at work, but even that depends on the working environment. I also made my own adjustment, by moving closer to work so that I could walk there and not have to travel by bus. 

    I hope you can get adjustments put in place to make your life easier.

  • in reply to Mr T
    Mr T said:
    I don't know myself what this means

    I figure this refers to my question about safety?  Tricky thing that duty of care might be used as a dual edged sword against one... 

    I have just had my first telephone call with ACAS and they have pointed out the importance of raising a grievance and kind-of pointed me in the direction of thinking about possible tribunal.  This fills me with trepidation and of course the more stressed one becomes the more difficult is is to be rational and act - I was first advised to contact ACAS 2 months ago and only felt able to do so today as my personal anxiety/capability curve has got to the point where it was possible.

    You indicate that your journey is towards a hoped for tribunal.  Things must be pretty bad for you if that's what you're hoping for. 

    Right from when I realised how autism and my workplace meshed I've been caught on this wire of give them enough rope and they'll hang themselves vs give them enough support and they'll work out how to support me and others like me  -  still feel like that...

  • in reply to Phased

    I don't know myself what this means but I have my manager saying this on a recorded teams call. I have at least one last hurdle to navigate at the end of this month before grievance and tribunal, hopefully.

  • in reply to Joe
    Joe said:
    Some of the things people say to me are 'why didn't you say something', 'you should have told us earlier', 'how can we help' etc.  They mean well, but are missing some fundamental understanding.

    Agreed - there seems to me to be something deeply illogical in expecting someone who is disabled in a matter such that they are not aware of something to be expert in identifying when it is taking place...

    You hit the nail on the head about being specific about what is wanted.  Lots of the reasonable adjustment suggestions make this one clear. 

    Sadly my reflection upon this is that in my personal workplace and perhaps in many others what is wanted is truly so multi-factorial and ultimately unachievable with the available resources that defining this openly and honestly for employers is very difficult.

    Thank you.- your reply helped me consider this. :-)

  • in reply to Mr T

    Thanks  I'm saddened and also a little alarmed by your experience.

    I hope that you have found other ways to feel good about things beyond career.

    I feel awkward about asking however, if possible, please could you elaborate upon what justification for your being in your job was not safe?  Safe for you?

    I have been trough several "support meetings" where I have raised verbally and then in writing the issues that contributed to my burnout.  I am now at the point of realising that I have to write out what the reasonable adjustments are and these are ones that are valid for all my colleagues in my opinion - not just for me.  "needs of the service" means the personal needs of employees are trampled over in my experience... 

    I had "reasonable adjustments" before that were not adhered to and where not fit for task - legal route re: same remains open.

    Hmmm... nice boss? I've known some... capable boss?  I've known some...  An individual that combines both these - they are pretty rare.

    Am heading back to writing stuff down now...

    Thanks again

  • Some of the things people say to me are 'why didn't you say something', 'you should have told us earlier', 'how can we help' etc.  They mean well, but are missing some fundamental understanding.

    First off I can't always identify, understand and tell you what might be wrong or what I need.   Then if I can, I have 50 years of programming to try and bypass where I was told I was 'difficult', 'awkward', 'bloody minded', 'pedantic', 'high maintenance' and various other things.

    So whilst I don't like support or functioning labels, as for me it's changeable, I have accepted the disabled label. I now recognise that not everyone gets stressed travelling in and out of town, asking for help or going to appointments.  So if there are accommodations, I probably should use them and not feel guilty about it.  

    At work, it's really not that difficult for people to give me an agenda for a meeting, let me sit in the corner or be specific about what they want.  You may find there are a bunch of things you already do that are accommodations you made for yourself without realising or understanding why.

  • Phased said:
    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 have to agree.

    The term reasonable adjustments brings me out in a cold sweat. Asking for 'reasonable adjustments' has effectively ended my career. I have been told that it is no longer safe for role to continue, therefore, I must be redeployed. Blatantly ignoring the law and hiding behind generalised terms like 'needs of the service' to reject what I and others has spent a great deal of time and cost to ask for in the first place.

    I wish you all the best in advocating for your specific adjustments. Just get everything in writing as your nice boss might turn out like mine!