Obviously, I rarely blog here very often any more, as I have taken the activities of Living beyond dementia to a whole new level! In fact, I have not written even a monthly blog on that site or on my recipe blog since August!! In October, I posted four blogs here, and in November, so far, only two! It could easily feel like I am ‘failing my blog readers’, but in reality, it is probably a huge relief for many who are subscribed to it!
Please note, I do not feel like a failure, at blogging or in life, although my health and cognitive capacities are definitely failing me!
Anyway, enough rambling, today, I am highlighting an article I’ve just read written by someone living with Asperger’s, and it felt a lot like many of the issues I feel I face living with dementia, and also, that it appears others with dementia might be facing. As always, I’d appreciate your feedback and thoughts on it, esPecially if you think I am barking up the wrong tree!.
If we seek to understand living with dementia differently, then perhaps we can better support people living with it, or even live more easily with it ourselves…
What does it feel like to have Asperger’s Syndrome?
By Anonymous, on Quora, posted February 1, 2015
You have absolutely zero social intuition (and not just that – but you don’t even notice the social cues that allow you to develop that social intuition).
As a result, every social situation feels like a potentially awkward situation where you don’t know what to do or say (especially when it’s so hard to enjoy the things that other people enjoy – and forcing yourself to enjoy what they enjoy doesn’t work at all either).
This immediately resonated with me, as does the beginning of the next paragraph:
It also results in a considerable amount of habit inertia – it is difficult to change your habits, and you often have to be warned/reminded several times about one of your habits before you can finally internalize what people tell you, and finally change your habits (if ever).
The third paragraph starts with:
Also, it means that you “march to your own beat”. Most people seem to have internal forcing functions that make it easier for them to march to the beat of other people (or “synchronize” with them).
Further on in the article, it says:
The other thing is that it’s often profoundly isolating to realize that almost no one in the world is going to fully appreciate the obsession that you have with your particular set of interests (and with the particular details about your interests, too).
Do read the whole article if this has caused you to sit up and wonder if living with dementia is even remotely like developing and therefore living with Asperger’s.
It often does feel profoundly isolating, but as Simon Baron-Cohen once said on edge.org, the Internet is super-liberating for all of us.
People with dementia who are able to access the Internet have certainly found it totally liberating and supportive; it reduces our isolation, even if it only means we read or watch things online. It does though, also mean we can support each other, as Dementia Alliance International does so well every and every single week in a number of different time zones with its online support groups, cafes and other events. People with dementia can join us here…
Hi Kate – I am caregiver for my parents, one with dementia and the other with Alzheimer’s (according to our medical labelling system) and each of them is on a very, very different path. In addition, I have a nephew with autism. I quickly noted some similarities between my father and my nephew, in terms of successful engagement. Whether through music, movement, or dynamic distractions, there seems to be a more evolved way of communicating with them, possibly by getting around conventional methods and focusing on body language, energy emissions and emotions.
I think you’ve made an interesting parallel, and there’s probably a scientific explanation for the connection! We do spend a lot of time and energy, though, on labelling and defining, don’t we? It is what it is, and you, my father, my mother and my nephew (and myself, if that is my destiny) each deserve to be addressed and integrated as individuals with special needs specific to themselves.
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Thats for sharing yourself and your family experience with me Lorrie, and take great care, always. I often say, forget the labels or titles, and please just call me Kate. x
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Glad you are still doing okay and taking some time for yourself. After all you have accomplished in your life I hope that you embrace your contributions as phenomenal(they are) and you are being good to yourself. Don’t know if you have Thanksgiving down under but I’ll wish you one anyway! Hope you keep checking in from time to time. All the best and much love…VK ❤
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Special wishes for Thanksgiving to you and your close family and friends. We don’t have it here, and instead wait for Christmas Day! Much love and lot of hugs and friendship to you always dear VK… xx
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Hi Kate nice to hear from you again. I think a lot of people with conditions that are not seen, work like we do and feel like we do.
Do you have a Facebook page or messenger
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Good to be back, even if only for a day, and to hear from you! I am on Facebook and Messenger, so feel free to connect. I just looked you up on FB, but there are too many for me to know which one is you! You can find here here https://www.facebook.com/kate.swaffer
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Kate, this post surprised me. You’re so socially “adept” – you read people so clearly.
I see you sometimes “escape” to your own thoughts & feelings…is this what you mean?
Lxx
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As we discussed in person this week dear Lynda… it is all the things I can still hide, or choose to hide. The day is coming, when I will simply be too tired to paddle, or too perhaps sad with all the losses to care.
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Hello my dear friend Kate,
You could never be perceived or seen as a failure in anything.
What you are is an absolute inspiration to those living with dementia, but also to us who work in the field of trying our very best to understand a world that only you can educate us on. As you live it, you are truly the only professional here.
As I often say, YOU are the experts here and the ones we need to listen to so that we can understand.
The exerts above are so very sad to me because it just highlights and reinforces again how little compassion and empathy the general community and many health professionals continue to have towards people they judgementally label and stigmatise as being different.
And is different wrong??? No its not. And as there really is no definition of what normal should be, I find it quite irritating to see cognitively aware individuals who continue to judge others based on stereotypes.. How arrogant and how insensitive and cruel.
Does it not seem like common sense to see the person and not the condition???
Does it also not make sense to use your cognitive ability to imagine the best we can the reality of another and meet them within that reality??
Given we have the cognitive ability to do this, are we not being neglectful to the extreme by expecting the reverse????
I believe Asperger’s and dementia and many other conditions that affect part of brain function can have similarities, and parallels, but regardless, every person will be affected differently by whatever condition they live with, and we must be aware of the individual in every single specific case, and honour them as a person in their own right, and respect their personhood and the place they rightly hold in the world.
Leah.xx
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Honouring everyone, for their uniqueness, and differences is what I strive to do, and it is interesting things based on your thinking are changing in regard to diversity and disabilities at the WHO as well…
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Thanks Kate – you are a shining star.x
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You are shining light right beside me, for which I feel hugely humbled by xox
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Actually, I prefer less frequent posts. It’s too hard to keep up with daily! ❤
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haha, now that made me smile! xx
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You know me: like you, I tell it like it is (or at least like it is for me LOL :P!)
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LOL!!! xx
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Thanks Kate!
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It is an interesting comparison… I’m waiting for someone with Asperger’s to set me straight! xx
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Hi Kate
thanks so much for sharing your thoughts and wisdom, you bring us all back to the real world Anne
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Thanks Anne… glad you think so! Hope you are all well in Ballina? 🙂
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I miss you, my dear long-distance friend! Take care, do what you can, and know you are loved – even by someone who has never met you in person.
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That’s lovely dear Mary… miss you too, and hope one day, we might even get to meet in real life! x
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