posted on October 22, 2008 at 8:07 pm

i must admit
when i first met my nephew marlon
i thought he was a naughty little sod
he reminded me of myself as a kid in many ways
he didnt like saying hello or goodbye
he was difficult n hard to reach
he always seemed like he was up to something
he flouted authority
only he took it to the nth degree
while i was more easily “brought into line”
i must admit i got angry with his antics n his carry-on
just like all those old bastards got angry with me as a kid
then i guess he was diagnosed
with having aspergers syndrome
a type of mild autism
it gradually became apparent
to even me
that marlon was not merely a naughty little sod…
after accepting it
it was so much easier to hang out with marlon
and leave him alone if he wanted that
he came on a bush walk with us one day
saying nothing at all….he was about 5
but every now n then hed say something incredibly pithy
or he’d ask what “prosecuted” meant after reading a sign
russell n i were discussing a film
marlon was sitting there blank faced
you woulda thought that he was miles away
suddenly he says
“that film is actually available on dvd now
ive seen it at the video shop , filed under blah blah
and it costs blah blah to rent or blah blah to buy”
and hes suddenly silent again
he has the ability to get obsessed by an idea
ie being harry potter
and take it all the way
just like a genius
or a madman
or any mover n shaker
i dont understand it
i still think there are naughty little sods out there
and everyone gets a syndrome these days
and some ratbags are hiding away under their supposed label
but marlon is undeniably different
hes in his own place if he wants to be
this world seems a bit ordinary to him
he has a lively imagination
hes very handsome….handsome uncles on both sides will do that
and hes strange but obviously a bit of a genius too
and thinking about it
its possible that i myself
could be
(drum rolls n cynical laughter)
or could have been
very very mildly asbergers too:
the disdain for the mundane world
the rich inner life
the lack of social skills…i was a ‘orrible kid
(or was i?)
aspergers children cant read other children that well
or be read by them back
i was a little like that
i dunno
maybe i was just a naughty little sod
anyway
russell n amy
have turned it all around
taken this potentially tragic situation
digested it
taken it on
and turned it around
with 2 docos on aspergers
the second one was screened on telly last nite
a student of russells with asp. n 20% vision
this guy mark
he can tell you any chart position of any record
from the 1980s (especially)
so russell n amy have the great idea
of trying to get mark on rockwiz the aussie rock quiz show
i myself was on a few weeks back
anyhoo
the doco tells us some fascinating things about mark now nearly 40
he dreams a parallel world every night “a continuum”
in this world he has a wife
hes got his own label
hes a rockstar
an astronaut
a hero
a detailed parallel universe
his imagination is so incredibly developed
all illustrated and mapped by mark
i’m totally sucked in
i’m feeling like this universe aint so imaginary
mark tells of instances which sound just like astral travel
then the sad stuff
HE WAS BEATEN N RIDICULED N OSTRACIZED EVERY DAY AT SCHOOL!
fuck!
even the rottenest kid at lyneham wouldnt have hurt a guy like mark
where do they breed these monsters?
what kind of syndromes do they have to beat an almost blind kid?
i was starting to cry at this point
my family all stared goggle eyed at the screen
forgetting now we were watching russells doco
n just caught up in marks incredible story
yeah it was a fuckin’ tearjerker
and i was so on marks side now it wasnt funny
anyway russell n amy take him round to see glenn a baker
austs own rock brain of the universe
and a bit of an old mate of mine
we question each other on trivia
and last time i saw him at the divinyls last year
i outgunned him
(knowing the keyboard player from grand funks name!)
eventually mark tries out for rock wiz
and vindication!
he slays em
he gets on the show
he is selected
what happens next you’ll have to wait for saturday nite
when the actual episode is aired
but im hoping for a fairytale ending
eg marks side wins
an amazing doco
about the capability of the human brain
about what we used to call idiot savants
about redemption n justice
about russ n amys own struggle
about the determination n perseverance of one guy
against a stupid cruel world
i rang russ up to compliment him
lo n behold mark himself was round there
we talked for twenty minutes
i was pumping him for info on his private universe
jesus…what a guy
yes he deserves whatever comes now
maybe not much after all the hoo ha dies down
he loved music so much growing up
all those love songs
those songs he listened to at home quite friendless
“i just wanted a girlfriend to love n be loved
just like other kids” he said sadly on the phone
imagine his loneliness
that beautiful genius mind of his
sussing n grokking all that music
cataloging it in some strange way
just like tommy in the rock opera
his soul n ‘magination took flight…
i cant wait for saturdays show!!!

44 Responses to “square pegs in round holes/ making your mark on this world, somehow”

  1. avatar
    craig1.618 | 22 October 2008 at 9:18 pm #

    that was beautiful

  2. avatar
    jax | 22 October 2008 at 9:36 pm #

    amazing too, would love to see the doco.. here in the States we have loads of Asps and ADS kiddos..and loads of Special Ed teachers to help.. on another note I finally got some Painkiller tanks to JosieP.. and I have been eaten by Wolfe..go//get// Painkilla///

  3. avatar
    Queen Hatshepsut | 22 October 2008 at 9:46 pm #

    Beautiful, heart-breaking. I had tears in my eyes reading about Mark’s loneliness and then just cried thinking of anyone mistreating him. You’re right – what kind of monsters would do that to him indeed?

    I heard on the radio yesterday a 14 year old boy (no Aspergers) shot himself at school as he was mercilessly bullied and apparently snapped and couldn’t take it anymore. As a former teacher of 10 and 11 year old children, I have never seen such horrific bullying in my life. It really is quite awful and is much worse than it was 30 years ago when I was a kid.

    I too, hope for a happy/fairytale ending and will wait for your report. Russell and Amy and Marlon and Mark are the reason I don’t lose all hope in humanity. Thank God for them!
    denise

  4. avatar
    princey | 22 October 2008 at 10:58 pm #

    The doco was great sk, well done to R&A, it was sad and moving, but I love the way they put the comic-strips in to describe Mark's imagination and feelings, it totally lifted the mood. Yeah, it was so sad when he described the despair, loneliness and bullying he experienced as a kid. I do remember kids being pretty mean back in the 70's, and namecalling was BIG back then. Luckily I went to schools where the majority of kids were from ethnic backgrounds, so I didn't cop the "wog" bullying, but I remember if a kid wore glasses it was "four-eyes", overweight was "fattyboomba" etc….sounds pretty innocent compared to todays bullying though.
    I was so happy that Marks spirit was taken to another level when he was in the plane looking out over the clouds, you could tell he was experiencing something we will never experience. I was teary all the way through this show, well done and good luck to him on Rockwiz, well done Russell&Amy!

  5. avatar
    ...being here, doing this... | 22 October 2008 at 11:10 pm #

    “he dreams a parallel world every night “a continuum”
    in this world he has a wife
    hes got his own label
    hes a rockstar
    an astronaut
    a hero
    a detailed parallel universe
    his imagination is so incredibly developed
    all illustrated and mapped by mark
    i’m totally sucked in
    i’m feeling like this universe aint so imaginary”

    sometime
    we all gotta ask ourselves
    the question…

    “where am I needed?”

    and sometimes
    the answer we get
    is the one we least suspect!…

    “surreal universe”!

    .

  6. avatar
    the dean | 22 October 2008 at 11:32 pm #

    Sat down, turn on the box, SBS, But no show, rifle through tv guide 8pm – what time is it, 8:30……

  7. avatar
    Also Ran | 23 October 2008 at 12:05 am #

    I'm a new commenter here. I have a beautiful 7yo 'Aspie' son and have only recently discovered your blog. It was wonderful to watch the doco last night & then come on here & see you insights & thoughts.

    I cringed at the inclusion of 'rainman' in the title of the doco, but the doco itself was moving & well done. Thanks Russell.

    Those words from marlon about the movie could have been said by my son, although he would have included the rating, the reasons for the rating and a comment about how badly scratched DVDs from video libraries are.

    I bought Starfish in the early 90s and it has been a CD that I have turned to many, many times over the years. And each time it delivers exactly what I needed. I have no explanation as to why I hadn't bought more Church until recently. I absolutely love P=A and am waiting for Heyday, ULTC and PainKiller to arrive. So much more to discover….

    Just gotta say I love the way you sing, play bass, your lyrics and your songwriting. Thank you for what you've delivered. Love you man.

    From an emotionally stifled 42 yo aussie male!

  8. avatar
    captain mission | 23 October 2008 at 12:15 am #

    unfortunatly i missed the show, it would have been of great interest to me as i work with autistic people as my clients.
    over the years i began to realise that as much as i was doing for my clients they were doing for me, enriching my life, it’s a beautiful universe they inhabit.

    their fixations and behaviours appear so trivial on the surface but dare to penetrate slightly and…revelation, there’s things going on that we can only grasp at.

    how our world must look from their eyes, so strange with its weird constructs and rituals, just as theirs often appears to us but they all seem so happy living in it, until someone comes along to change it.

    and here music is an amazing tool to reach people, a bridge between worlds, i’ve literally seen people who never react to anyone else not even their own parents smile when i sit with them and play a cd they like (i must say three of my clients love the church. it seems obvious becuase of that etherical energy but it’s interesting to watch how they get excited about it) theres a flicker in their eyes, a recognition.

    i sometimes think that the people with asbergers syndrome are able to tap into the akashik record, they have such incredible recal it’s beyond conventional explination.

    i’ve read all the theories and science but the one that makes most sense is these wonderful people come into our lives to teach us our lessons. well it certainly works that way for me.

    great blog entry, made me all emotional and squishy.

  9. avatar
    Celticat | 23 October 2008 at 12:42 am #

    Fabulous!

    Love
    Celticat

  10. avatar
    amy | 23 October 2008 at 1:34 am #

    Thankyou Steve Mark was very happy to talk to you last night…and Marlon to read bloggy today…I think there’s quite a bit of Aspy in both sides of our family…there is some great stuff online about the who’s who of art and science and their autistic tendencies-Russell thinks it’s evolution. love ya see u weekend x Amy

  11. avatar
    linjo | 23 October 2008 at 1:40 am #

    I was thinking WTF highschool did Mark go to? I went to highschool just up the road from where Russell is teaching and like you Steve, cant recall anything like what Mark described. (they had him on the ground kicking into him). Yeah there was a few female swine nasty canastas but cant recall any boys bullying.
    Yep it does restore your faith in human nature to see people like your bro and sis in law. I thought it particularly sad when they took Mark to the trivia night and said he had never done anything like that as he had never had friends. Linda

  12. avatar
    Cita | 23 October 2008 at 2:05 am #

    As an art teacher I have known a number of boys with asbergers over the years. Reading your blog made me sigh very deeply. I thought about how amazing these boys were at Art and how ‘lost’ they were in the school structure. People…teachers and students alike just don’t seem to know how to relate to someone who has the unique gift of asbergers. I don’t doubt you had a touch of it yourself in your childhood. The true gift of genius has many masks. A sensitively and beautifully written blog as always. A beautiful homage to your nephew…if only we could all so easily tap into the profound magic of our own private universe.

  13. avatar
    Hellbound Heart | 23 October 2008 at 2:05 am #

    children/teenagers/people can be such utter assholes when it comes to anyone that doesn’t look/act/think like everyone else, can’t they…
    i am a great believer in what goes around comes around, both good and bad….just wait, people will get what they deserve eventually…
    a beautiful mind…
    love always….

  14. avatar
    Jasperina | 23 October 2008 at 2:44 am #

    This world seems a bit ordinary to him…

  15. avatar
    lily was here | 23 October 2008 at 2:59 am #

    Beautiful sk.

    My comment to RK is 2 blogs back, but want to add that I hope you can get the other doco shown on telly, would love to see it. ‘Australian Story’ would love Mark’s story too. My son’s best friend in primary school (now 17) was finally diagnosed with mild Aspergers only 4yrs ago after some really difficult times in all our lives; so it really caught my attention when RK blogged about it. Credit to you both for recognising the great guy that Mark is. Marlon’s a lucky guy too. Its hard enough trying to make sense of life as it is. I gather Mark had very supportive parents too for him to turn out so together after all he went through?
    Imo, the Rainman title drew attention immediately. Viewers knew exactly what it was about. The doco was filmed really well, subtle, letting Mark tell his own story without the need of huge dialogue or interviews; pretty brilliant if you ask me. Im editing my 3rd short movie today. I know how hard they are to do. Im desperately looking for some scary music right now that might have Kilbey in the credits 🙂 Sorry for the ramble but this excited me. Cant wait to watch sat nite either. xxxx

    ps Marlon, your mum has a lovely speaking voice.

  16. avatar
    ...being here, doing this... | 23 October 2008 at 4:05 am #

    I remember when my older brother (who has aspergers) was a little kid…he could sit at a piano and play tunes from memory…without ever having learnt “how to play”. He could also draw freehand a map of the world. Education, as it was in those days, “educated” this skill right out of him!!

    He rediscovered his artistic abilities later in life thanks to a worker at a community centre who took the time to help re-awaken his dormant talents.

    Fortunately, these days, the options to tap into and utilise creativity are much better…eg…Nordoff-Robbin Music Therapy

    BTW – Well done Mark, Russell & Amy! And great blog SK & great comments everyone!!

  17. avatar
    Anonymous | 23 October 2008 at 4:39 am #

    I sit next to one of those types here at the univ in sheffield and I really feel sorry for him. Nice bloke but there are only about 45 cards in his deck if you know what I mean. Cheers everyone. Nice stuff Steve.

  18. avatar
    steve kilbey | 23 October 2008 at 4:49 am #

    YEAH
    BUT MAYBE THEYRE ALL JOKERS
    SK

  19. avatar
    davem | 23 October 2008 at 6:43 am #

    That was really moving. Thank-you.
    I’ve got a resident with Aspergers. He manages to live independently with his 13-year old son who also has Aspergers.
    It’s really sad but there doesn’t seem to be any support for him and for me he’s one of 3,500 residents. He gets angry and frustrated when I can’t give him the level of contacts he needs, but I really admire his courage.

  20. avatar
    Anonymous | 23 October 2008 at 9:18 am #

    Steve, you’ve written this with such feeling and all you’ll get today is this American dick pretending to be someone else. I wish you’d turn off this anon option.

  21. avatar
    Anonymous | 23 October 2008 at 9:45 am #

    thanks for remembering me steve!

    graig frost

  22. avatar
    melissa | 23 October 2008 at 9:51 am #

    I feel so awful now that I managed to miss watching/taping this doco last night 🙁 … I hope that it might become available on DVD at some point, I would love to see it! Will definately be tuning in to rockwiz on Saturday night!

    Thanks so much for sharing this beautiful bloggy today SK!
    xx

  23. avatar
    Anonymous | 23 October 2008 at 10:05 am #

    Sheffield wag, turn it off for one day. Go take a walk or start collecting stamps or something. Fantastic retort to him Steve and quite poignant. Beautiful words today. Lets all take a moment and think about the things in life that are truly important. God and all meaningful human relationships. I have never heard of one person on his deathbed stating ” I wish I would have spent more time at work” Best wishes to all.

    Percey Ledbetter

  24. avatar
    Anonymous | 23 October 2008 at 10:23 am #

    On a lighter note, went to eat lunch with my wife yesterday and the host said, “we welcome you”. All day long the chorus from welcome (magician among the spirits for you newbies) was in my head. We welcome you….we welcome you… all day long. I came home and took out the cd and listened to the song for the first time in quite awhile. Tony Curtis, Al Capone, Francis Drake, Henry VII. Would love to know how you came up with that eclectic group of characters Kilbey but that is topic for another time. Truly,

    Percey Ledbetter

  25. avatar
    growfins | 23 October 2008 at 10:24 am #

    Terrific doco and my appreciation of it has multiplied by todays post.Its all about the amazing redemptive and healing powers of music be you a player or consumer.Rock n roll can be a private universe, an escape from reality ( however reality may be perceived by self or others ), an outlet for catharsis or expression or in this case the ability of a square peg to show his genius by fitting into a round hole and give others an inkling that ‘straight’ reality is no more valid than one individual’s unique take on it.

  26. avatar
    Anonymous | 23 October 2008 at 11:48 am #

    This anon shit is easily solved. Lets go back and check the blog log for Sunday when The Asshole kicked off again. What’s the betting there wasn’t anyone from Sheffield on here while The Asshole was spewing his bile? And what’s the betting that there WAS someone on here at that time from America? The “disgruntled musician” that Stevo identified on Monday, no doubt.

  27. avatar
    Peter Podcast | 23 October 2008 at 12:01 pm #

    Thanks for all the great comments.
    I was blessed by providence.
    If you didnt catch it SBS will put it up as a stream very soon.

  28. avatar
    Anonymous | 23 October 2008 at 12:03 pm #

    There is no “anon shit” going on sheffield wag “anonymous 10:48”. Let it go. You are the only one causing problems. We get it. You are from sheffield and you are defending the sheffield wag. Of all the times to be bringing this shit up you amaze me you small minded nitwit. Move on. You are at university in sheffield. Smell the roses. Talk to some girls at the computer lab. Get a life! Hey steve, is there anyway to block commentors from sheffield only? This will solve the problem.

  29. avatar
    Anonymous | 23 October 2008 at 12:38 pm #

    This is driving me crazy. I am the real original wag from Sheffield. I go to university. This new psycho is not really me. In summary, I am the original wag who was quite clever and signed on with the various names. I really had it hard for ricky maymi. Remember me? He even said he would beat me up once. Anyway you can tell this new wag is not me. I am the only wag from sheffield. Jesus christ this is frustrating. This new american guy is not me. Long live sheffield. true i am the only anon causing a problem today but this will stop this instant steven. No more. A friend of mine said I was giving sheffield a bad name. I love the church and my previous wagging was only a joke. At least I was clever. cheers

  30. avatar
    davem | 23 October 2008 at 12:47 pm #

    Thanks Russell.
    That’ll be great for us all down here in blighty.
    Much appreciated.

  31. avatar
    Anonymous | 23 October 2008 at 1:13 pm #

    Looking forward to that, Russell. Thanks for letting us know.

  32. avatar
    John | 23 October 2008 at 1:42 pm #

    SK, I’ve said it before and I’ll say it again, today’s blog shows once again that your truly brilliant writing, what separates you from the rest of the pack, comes when you write about personal things, the things you really know about, that come from your heart. In my opinion this is where your real talent shines through.

    I remmeber once reading something where PK commented that he thinks your best work is when you write about personal experiences. I believe he was referring to the lrics to ‘Buffalo’ at the time, but in all respects, he was so right.

    John

  33. avatar
    Jab @ BZT | 23 October 2008 at 2:11 pm #

    Amy, I don’t know if you’ll read this or not, but something you wrote above really, REALLY, grabbed my attention and piqued my curiosity.

    You said, “Russell thinks it’s evolution.”

    Does he discuss this idea in the documentary? I would love to hear more about that.

    Russell I know you read this. How can I go about getting the full version of your thinking on this subject?

  34. avatar
    Anthony | 23 October 2008 at 2:59 pm #

    Steve,
    This one brought tears to my eyes as it hits so close to home. “”i just wanted a girlfriend to love n be loved
    just like other kids” he said sadly on the phone.” That’s one of my biggest fears for Asher. Though I think he’s going to be fine in that aspect… he gives so much love now that I think he’ll continue to grow. His teachers were so proud of him the other day because he randomly hugged another child in his class. It’s amazing how many people have a child with Austism or Asperger’s, or know someone who does. Thank you for blogging about this and of course, thanks to Russell and Amy. The Kilbey men do make a difference in people’s lives. And thanks to the kindness of Sue, Olivia and I will get to see the documentary here in the states.
    Much love,
    Anthony

  35. avatar
    Anthony | 23 October 2008 at 3:32 pm #

    Oops, that would be Autism not Austism…

  36. avatar
    Anonymous | 23 October 2008 at 3:56 pm #

    Hey Anthony, my gut tells me that with your love of Asher everything is going to be just fine. I have three kids here in florida and I am blessed that they are “normal” whatever that means, but still a handfull. I believe love conquers all and Asher is going to be just fine with such a fantastic support system. My best wishes and prayers to you. Perry in Pensacola

    ps. It is ironic, I was just called into school because my kid was involved in a brouhaha, so anytime you want to trade lets make it happen. 🙂

  37. avatar
    Anthony | 23 October 2008 at 4:07 pm #

    Thanks for the kind words and encouragement Perry in Pensacola. We’ve been there with the “brouhaha” too. Asher’s 2 1/2 and almost got kicked out of his private school about a month ago for habitual biting. Luckily, he understands the every day reminders for “no biting” and has been bite-free. And yes, what is “normal” anyway”

  38. avatar
    Anonymous | 23 October 2008 at 4:25 pm #

    Biting? The only reason my wife married me is because of biting but I will save that story for another day. 🙂 All the best Anthony and Asher…Perry

  39. avatar
    Anonymous | 23 October 2008 at 8:44 pm #

    good morning,:) xo

  40. avatar
    restaurant mark | 23 October 2008 at 9:01 pm #

    very moving stuff…the blog and a lot of the comments. a woman who i used to work for at an art gallery has a son about 21 or so…anyway, i’ve known him since he was nine. super smart…off the charts smart. but would barely communicate with me, anyone…hell, hardly look at you. no friends or girlfriends in school, never studied made straight a’s. wouldn’t get a drivers liscense cause he didn’t want to go to the dmv and have to deal with people. got an academic scholarship to college, became more withdrawn and flunked out. finally his mom started having him tested and stopped assuming he was just “uncomfortable around groups of people” and they found out he had aspergers. anyway, two years later saw him at a coffee shop with his girlfriend. and is back in college doing well. so there’s always hope right…

    take care everyone
    mark

  41. avatar
    CSTCoach | 23 October 2008 at 9:16 pm #

    beautiful blog, and some wonderful comments. thanks for that. i really hope the docu is streamed somewhere, i'd love to watch it.

    who's to say what goes on in someone's inner world?

    i don't think i can add much to what's already been said by the fiendss, but this bit really caught my eye:

    >>he dreams a parallel world every night "a continuum"

    >>i'm totally sucked in
    >>i'm feeling like this universe aint so imaginary

    sk – have you ever read Haruki Murakami? i think you'd like it. try "Kafka on the Shore", or "East of the Sun, West of the Moon". He explores some of these ideas. Plus, he's a tremendously engaging writer. its good stuff.

  42. avatar
    ross b | 25 October 2008 at 12:22 am #

    just saw the doco last night from a videotape, what a good sweet decent guy is Mark! he’s a bit of a lyre bird too, he seems to go into radio-announcer’s voice when spieling off the rock-trivia from his incredible memory. Astonishing!

    that bullying stuff again…unbelievable…what sort of planet do we live on… !

    I wouldn’t mind having some of Mark’s fastidiousness when it comes to cleaning the house!!

  43. avatar
    Warpedjohn | 25 October 2008 at 2:35 am #

    Steve,

    A few days late but I hope you backtrack and read this.
    My younger brother is a schizophrenic. On the mild side ; a dr. said he was a “1 -out -of- 10” on a scale of schizophenia.
    He had 2 ” episodes ” about 15 yrs ago , was only on meds for 6-9 mths then weaned off. No troubles since.
    The only manifestation of the illness is that he finds it difficult to socialize. and still lives at home with our now elderly parents. He has a job.but few friends.
    My purpose in writing this is to ask if you remember him ?
    Apparently you crossed paths briefly in the late 70’s when your then partner had a stall at the burgioning Paddington markets.She went on to have a shop in Goulburn St. near the old Chequers called ” Love and Hatred” (?)
    I was travelling in India and Nepal at the time and sending hippie clothes and items to my brother who sold them at the market. On a trip to Europe I discovered all these cheap current LPs and shipped them back and the stall became 1/2 Indian with a crate or 2 of cheap records as well.
    My brother said you and he used to sneak off for cones together after you’d both set up your respective stalls.He also said you took a great deal of interest in the LPs I was sending back. He was under the mistaken impression that you named the band after the church which was the site of the Paddington mkts ( not so )
    This was about 1979-81 approx.
    He was ( is ) a tall blond guy , a bit thick -set and was 19 or 20 at the time. Drove a white VW beetle to the mkt.
    He would get a kick if I told him you remembered him.


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