Comments

11 responses to “Questions for Luke – May PDSG meeting”

1. 

   May 8, 2017

   Luke

   Please do ask some questions here in the comments section and I will do my best to prepare a decent answer for you!

   Reply
2. 

   May 8, 2017

   Carly Bailey

   Hi Luke

   Please see below a question that has been raised by a client:

   “Men and women experience Autism differently. It’s a social thing so it should be possible for men to find coping mechanisms that women seem to be better at. This may mean overcoming the gender barriers but what indeed are the gender barriers?”

   Reply
3. 

   May 8, 2017

   Carly Bailey

   Hi Luke

   Please see below another question raised by a client:

   “Watching groups of people that aren’t Autistic. They seem to enjoy just being a group, a thing in itself. Is this the case or am I imagining it? When I was young I was at a party. I felt completely out of place. There was some thread that connected them altogether, like a current or a wave passing through the group animating them. Their gestures were all depending on one another. The whole group was an entity in itself, separate gestures were expressions of a single will.”

   Reply
4. 

   May 9, 2017

   Dream

   Hi Luke,

   It appears that “Autistic Masking” has been known about since at least the 1990’s, however I can’t really find what I think of as a “clear definition”. Most of what I read appears to be about “hiding symptoms”, however I’m wondering what your thoughts are about it including other “autistic facets” such as “scripting”?

   I ask because I was thinking about how people have “tendencies” (we tend) and part of our natural “learning process” is copying, mimicking or “pretending” (practising tending in advance, or what I’m thinking is that “lying awake at night going over and over an expected phone conversation the following day with all the possible potential directions it may take” scenario, which is what I think of as “scripting”).

   All the best,
   Dream

   Reply
5. 

   May 9, 2017

   Dream

   Another quick question Luke. I was looking at the venn diagram

   here

   and was thinking “ASD is a separate diagnosis than ADHD, however all of the main circles directly overlap and are collectively called Neuro-Diversity”.

   If one subscribes to the idea that one is either Autistic or one is not (i.e. there is no “mild autism”), and if one is using “Autism” and “Neuro-Diversity” as synonyms (which appears to be done oft), then does it not follow that if one is diagnosed with any singular “neurodevelopmental condition” then one MUST be “on the autistic spectrum”?

   I’d appreciate it if you could share you thoughts, and perhaps explain if my logic is flawed!

   Reply
6. 

   May 9, 2017

   Dream

   Apologies if I appear to be “hogging the questions”. I am wondering (due to my own experience and that expressed by those who have been closest to me whom I now suspect are/were “on the spectrum”) whether we Autistic Folk have as “defined a sense of self” as those deemed Neuro-Typical?

   I held the belief that I had a “strong sense of self”, but reflecting upon that I wonder if that is true. I think I may try to attempt to “reflect my environment” (act accordingly whilst being true to my Self – “walk with crowds and keep your virtue, or walk with kings nor lose the common touch” as Kipling said). When I say “try”, I am not convinced it is a fully “conscious effort” as there may well be subconscious “scripting” which comes into play.

   Anywayz, just thought I’d mention it Luke as this whole “Identity” (as it is commonly called) issue seems to be of relative importance amongst the “Autistic Community” (of which I am a part), and questioning it raises somewhat existential concerns for me.

   Reply
7. 

   May 13, 2017

   Helen

   I have to say Luke, what a very interesting and very well put question you raise here – your accuracy – reflecting ones environment, walking with the crowds, describes daily life that I feel (from my own experience) is reliant on ” subconscious scripting” with yes of course, some conscious effort. All in all leaving one with a deeply exhausting result from another days “masking”
   I will share here something that has been on a slow burn in the back of my mind, and that is to do with the September 2018 Axia conference.

   I really do apologise if this is not an appropriate place to “voice” this, but here goes.
   On the day, an ASD affectee travels, probably some distance, to the venue.
   There follows presentations, talking, general noise I imagine, socialising, refreshments, anxiety due to strange venue, no routine to follow etc. The afternoon of workshops – group work, individual input – one wants very much to participate, but at this stage having already been overloaded with sensory information, I am concerned as to how eloquent one may be.
   The potential to come away feeling dreadful due to lack of ability to fully convey, describe, reply, engage etc, is HUGE.

   Then of course one has to find ones way home in a depleted state.
   Of course there is the possibility, that one will feel to be on a high from being involved with such a wonderful conference, for it truly is; but realistically as an ASD person, I know that the most wonderful events imaginaeable can be too much to cope with, and result in brain freeze/meltdown/shutdown.

   Again, I’m very sorry if this is not appropriate, but it kind of fits in a little with the “masking” situation. At the end of the day, and with the greatest will, it is not possible to function and mask as a neurotic typical without fallout.
   Very kindest regards
   Helen Jones

   Reply
   1. 

      May 13, 2017

      Dream

      Hi Helen,

      This doesn’t appear to be an inappropriate venue to voice your thoughts to me. On the contrary, your description of “travelling” (including the returning in a depleted state) to an “event” (which despite wishing to contribute and participate in, one may find one is unable to cope due to feeling overwhelmed) being incredibly stressful is something I totally relate to. So much so, I am still both frustrated and embarrassed that at the last conference I attended in Wales, during lunch I “had to go” and headed home.

      I’m thinking the PDSG on the 24th will be worth “masking up” for 🙂

      Best wishes,
      Dream

      Reply
      1. 

         May 15, 2017

         Helen

         Hi Dream,
         I’m very grateful to you indeed for your reply here. For your recognition and validation of my worries; and also for sowing the seed of the idea that if I need to leave, that would be ok.
         Mask at the ready.
         Kindest regards
         Helen

         Reply
         1. 

            May 20, 2017

            Dream

            Hi Helen,

            I’m really pleased you found some of my words… would it be fair to say “of comfort”?

            Sincere apologies Helen, I DO feel your intent (I am humbled by your compliment) but my head has this thing about “validation” as a concept, and seeking it from “others” rather than “Self” (if that makes sense?), so I’ve had a “little adrenaline rush” from a single word which has skewed my mind!!!

            What I am trying to convey is that I resonate with many of your descriptions of experience (I say “resonate” but I may mean “recall”). That certainly means “you’re not alone”, but the responsibility of “validating”, claiming something is “valid” feels too much a weight for my shoulders my friend! Apologies again, I think I get waaay too hung up on “words”! <*chuckle*>

            Regards my “sowing a seed” of the idea that if you NEED to leave then it would be okay, I don’t think anyone at the group would EVER “judge” anyone for “having to leave”, on the contrary I think it would be FULLY understood and appreciated by all (it’s happened to me and it was either not mentioned or I was shown compassion, so all good!).

            Yes, “Mask at the ready”! 🙂 It’s funny thinking about it now, but in my youth I used to think of the same concept as mentally “suiting up”!

            Despite any additional stresses the thought of changes in seating or increased number of people attending next Wednesday’s PDSG may create in my mind, my feeling is that they are all worth it just to listen to Luke!!!

            I hope to say hello on Wednesday (unless I’m wearing my tortoise hibernating mask 😉 )
            Best wishes Helen,
            Dream

            Reply
            1. 

               May 22, 2017

               Helen

               Hello Dream,
               I am happy to report that I have finished reading your book, and whilst I didn’t understand ALL of it, I read it cover to cover with great interest.
               It moves along at a great pace, covering so much and allowing the reader very generous insight into your life.
               It is a most honest, moving, challenging and brilliant book and I feel very privileged to have read it.

               I’m looking forward to Wednesdays PDSG and yes, hopefully we can say “hi” but if we only manage a nod and a thumbs up so be it.
               I agree that it will be grand just to hear what Luke has to say.
               Kindest regards
               Helen