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I’ve compiled a humorous look at the top ten list of
comments I’ve personally received. Please note that I have High Functioning
Autism / Asperger’s Syndrome so my responses reflect this.
1. You look so
normal. Are you sure you’re autistic?
Ok, so how does autism look?!? This type of statement is so
common that I’ve lost count of how often I’ve heard it. I believe this
statement is often intended as a compliment, but that’s rarely how it comes
across. In reality it can offend on so many levels. After all what exactly is
‘normal’? So am I sure I’m autistic? Yes! Do I need to prove it to you? No!
Unfortunately this was once raised by a manager at work who insisted on second
opinion and sent me for re-diagnoses, and the results…‘See, I told you it
was!’. The reason it’s not always evident is a combination of peoples misconceptions
of how a person with autism should behave and my own strategies at blending in
with the neurotypical world.
Now would it help you if I wore a label….
2. Stop hiding behind
the label of autism.
Well you wanted me to wear the label! The difficulty of
autism is that it’s invisible. Sometimes it’s really in everyone’s benefit if I
can explain why I might need to approach something in a different way or may be
acting in a slightly unexpected way. Good examples are the police alert card
and times where I’m feeling overwhelmed and need to leave a situation.
So if you don’t want me to have the label afterall, perhaps
you can wear one so I know you might be asking me silly questions…
3. Get yourself out
more, that’ll make you feel better.
Ah yes I see you’re wearing the label, I’ll answer this
before you open your mouth again!
Often a generic response to anyone feeling a bit down is to
tell them to get out more and cheer up. That’s not what’s happening here. I
might feel down or anxious at times, just like anyone else, but getting out
more will probably make it worse. One of the more distressing aspects of autism
for me is sensory difficulties. When I’m feeling run down for what ever reason
my ability to process the world around me drops significantly. This can quickly
cause a sensory overload where it feels as though the brain has crashed. Sounds
and light become painful and communication almost impossible. I’d rather this
doesn’t happen and I’m sure you wouldn’t like it either. I think I’ll stay in
and listen to some soothing music thanks.
4. You look
uncomfortable, stop doing that with your hands, it looks strange!
Well I told you going out wouldn’t help! Yes I know I look
uncomfortable and I’m acting strangely. The more you point this out the more
self conscious I’ll become and the more ‘autistic’ I’m likely to act. Sorry,
that’s how it is! I’ve very aware of how this is. If it makes you uncomfortable
then that’s your issue to deal with. If I’m feeling uncomfortable or starting
to struggle please be respectful and accepting and things are more than likely
going to resolve themselves without any dramas. Making an issue of it is likely
to result in the dreaded meltdown…
5. Aren’t you too old
to have temper tantrums!
Yes I am, that’s why I don’t have them! Meltdowns are a
different beast altogether. In essence a meltdown is your brains reaction to
becoming overloaded and just like a computer crashing, it reboots itself. While
this is happening (for me usually 10 – 30mins) I cannot make any logical sense
of the world around me. This can be deeply terrifying and disorientating.
From the outside it can appear to happen with no warning at
all and be in direct relation to not getting your own way. In reality it is
often simply that a small misunderstanding or upset has tipped the balance due
to any number of factors you are unaware of. The biggest differentiator between
tantrums and meltdowns is that tantrums are conscious and controlled, meltdowns
aren’t. A tantrum is likely to quickly fade when the person gets their way or
when not observed, whereas a meltdown will continue until it’s run it’s course,
be repetitive and have after-effects of fatigue and confusion that can last
days.
The terminology used for this experience varies from person
to person which can lead to confusion. The way this manifests itself also
varies greatly. Some rarely experience this, for others it’s a crippling daily
struggle.
This is a huge topic that I’ll cover in more detail in a
later blog.
6. You shouldn’t rely
so much on your parents to help you, you’re in your 30s!
Don’t get me started on this one. Whether you like it or not
in some areas I need more assistance than the average person. deal with it! I’m
lucky enough to live a fairly independent and self sufficient lifestyle, but if
I’ve had a bad turn things can grind to a halt. If this means that I require
extra support then it shouldn’t be a concern of yours, everyone needs help some
times. The level of support required and ability to live independently varies
greatly from one person to the next. Perhaps instead of criticizing someone for
asking for support and labelling them as lazy, you could politely ask if there is
anything you could do to make things just a little bit easier.
7. How many ceiling
tiles are there?
It is true that there are autistic savants out there with
some incredible abilities, but not all of us can do that, maths and mental
arithmetic certainly isn’t one of my strong points. One of the features common
to aspies is strong and focussed interests so certain facts can roll off the
tongue at ease. Ask me about mushrooms or US geography and I’ll quite happily
talk at you for hours, but ceiling tiles – no. By the way, there are 136.5
tiles in this room.
8. My (friend’s kid,
neighbour, cousin….. ) is autistic, you’re not like them.
No I’m not. I’m like me. Autism is a broad condition that
doesn’t define who a person is. Every individual on the spectrum is just that –
an individual. How and to what severity the condition presents itself in an
individual varies greatly, as does that persons abilities and strategies in
coping and overcoming what life throws at them.
9. let me
speak slowly so
you understand me
OK, let me
reply slowly as
you don’t seem very bright
10. It must be hard
not having any empathy with anyone.
Yes and no. Yes it is hard, but not because of lack of
empathy, it’s because of this common misconception that we don’t have empathy!
Personally and certainly with many of my friends on the spectrum there is no lack of
empathy at all. What is lacking is the ability to instantly read the non verbal
clues and signs to read what someone is thinking or feeling. This can come
across as a lack of empathy, which for me often leads to great remorse at not
having realised how someone felt. Recently at work I was asked if a colleague
sat in my office was OK as she seemed very stressed. I had been sat next to her
for 6 hours and simply not noticed anything as she had not vocalised her
feelings. When I realised, I felt hugely upset that I had not been supportive
or helped a colleague who I hold in high regard and been ignorant of her
stress This isn’t a sign of lack of
empathy, it’s a sign of inability to read body language.
Thank you for taking the time to read this list. I’ll
discuss further many of the topics touched on here in later blogs. The list
could easily continue much further but If you have any comments and responses
you’d like to add to the list I’d really enjoy reading them. Please feel free
to post in the comments.
I love this!!! So often people question whether my son has aspergers -Yes he appears so normal but that's because of years of therapy & hard work on his part & mine & my husbands, and since when did you become n expert on diagnosing autism spectrum disorders?? It drives me wild when people assume he has no empathy -he would have to be one of the most caring, empathetic people I know & any form of social injustice really upsets him, we can't even have the news on at home because it upsets him far too much...
ReplyDeleteThank you Rachel. I will definitely be covering bothe of these topics in more detail in future posts :-)
ReplyDeleteThis looks like a relatively new blog. You are providing great insight, thanks for taking the time to post articles like these. Son has Asperger tendencies and I'm trying my best to "understand". It's surely is a roller coaster ride!
ReplyDeleteHi Steve - I often recommend your blog to people - both parents, aspies and colleagues. Very insightful - thank you for the time you take to help us understand each other better. Karen Wilmshurst - Autism Wessex
ReplyDeleteSteve, you're awesome! I am enjoying reading your blog, you have a great entertaining writing style. I can't wait to read some more of your posts. Thanks for putting up this blog, I am an NT wife to an ASD hubby and he and I are enjoying finding interesting articles on living day to day life with ASD.
ReplyDeleteI am newly diagnosed at 36. Due to a combination of physical disability, chronic illness, ADHD (diagnosed after my first year of college) and ASD my BA degree took 7 years, living with my parents after the first when I got sick- though reading my journals from that year I'm not sure how long I would have had before the ASD issues sent me there. After getting my degree I went home, and realized my trouble with in-person communication when I realized I could chat about nothing, as opposed to a group with even a loosely planned intellectual subject. So now I am trying to deal with people outside of book groups, discussion groups, classes, and hobby groups. I now know I'm face-blind, I know I don't make eye contact and am trying to find a balance between eyes, foreheads, over-the-shoulder things where I can get some of their expressions- and being so overwhelmed by those I loose everything else. Several people in my church group know now, one because she recognized a shut-down and got me out of the youth center gym where the noise reverberating off of the brick walls in the half-court room and the visuals of they players, which were constantly changing as players tapped others in, undid even my plan to only watch the basket and clap whenever the ball went through. Had the insight to know I needed physical help but with as little touch as possible and to stand behind me with one hand on my shoulder and wait for me to talk. So learning how to say things I'm just beginning to understand is hard, but you have helped.
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