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Here is an update of how things actually went on 22 April 2012….. Despite the gloomy weather forecast it is a very bright day – not too warm either so conditions are ideal.  I have ‘Team Autism’ across the front of my T-shirt – I just quite liked the phrase, even if the ‘Team’ basically consists of me.  I am here for my own very personal reasons, as are countless others.  The big corporate charities are well represented of course, but many people are here for their own personal reasons.  There are people with pictures of loved ones on their shirts, with some bearing an RIP message – some pictures look like elderly relatives, but others tragically are very young and you can feel the emotion even before the race begins. I am at the start line in Blackheath with about 35,000 other people so it is pretty cramped and finally we get underway.  We are very bunched up but within a couple of minutes I have found my stride (as the theme to ‘mission impossible’ rather aptly comes on from my ipod).  I start at quite a good pace (well, for me anyway) and soon overtake a rhinoceros - a good early sign. 3 miles and things feel great. The crowds are big and noisy as the heavy rock music from my earphones competes (unsuccessfully) with the sound of jazz bands on pub roofs and people dancing on tables outside.  It’s a carnival – and great to be a part of.  I overtake some someone dribbling a hockey ball with his stick (we’re now at 8 miles so I guess he’s going to do the remaining 18 like that).  There’s music everywhere – more jazz bands, dance music, steel bands.  Someone has even rigged up a PA system to their house which is belting out ‘Heroes’ by David Bowie, which is a great touch.  The miles pass:  young kids high five us as we pass them, old ladies hold out bowls of sweets and fruit, people see my T-shirt and shout “Go Team Autism!”   I guess with Autism seemingly becoming more prevalent in society I am managing to generate quite a few shouts of support on my way. I know Tower Bridge is the half way point and it feels good to be crossing this iconic site, packed with crowds at the sides screaming their support.  I reach the other side of the bridge and something awful happens from out of nowhere – nausea and cramp.  This really wasn’t in the script (I trained up to 20 miles without a problem!).  I can’t stop now – I am only just about half way there.  Suddenly it is out of my hands and I find myself walking.  This is bad.  I have got a lot riding on this and I can’t stand the thought of dropping out now.  I walk for a couple of minutes and try to be calm.  I reach for a banana and some jelly babies and sip water for a couple of minutes.  Slowly I start up again but the tops of my legs ache like never before and I really can’t understand why.  I plod on regardless – slowly, but at least I am running again.  A couple more miles and I have to walk briefly again just to re-set and re-group.  Things are definitely not going to plan, but then a woman runs past me having slapped me on the back and screamed “come on!” in my face.  I guess she meant well, and sure enough I start up again and gradually tick the miles off as I see the signs. It’s strange, but at 18 miles I feel fine again.  I pass the National Autistic Society’s cheering representatives and they see my ‘Team Autism’ T-shirt and give me an almighty cheer and punch the air in my direction.  This is better and I am beginning to enjoy it again. 22 miles and I am in the City, passing Canary Wharf – the crowds are now enormous.  We press on, past the Tower of London towards Westminster – the final destination being the Mall at Buckingham Palace.  25 miles and this is the worst time – the last mile goes on and on….and on.  The Rhino from way back at Blackheath overtakes me – not a great sign.  I check my watch and I have been going for 4 hours 35 minutes – the time it took me to complete the Paris Marathon 3 years ago.  Keep going – we are at Parliament Square and swing round into St James’ Park.  600 yards left, then 400 and the end is in sight.  It’s thankfully nearly over.  I plod on and high five the guy next to me (who looks well into his sixties) as we cross the line. 4 hours 55 - it’s been a struggle but worth it all the way.      Ten Things Every Child with Autism Wishes You Knew  <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">1.  I am first and foremost a child - a child with autism.  I am not primarily “autistic.”<span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">  <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: 'Times New Roman'; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">  <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">My autism is only one aspect of my total character.  It does not define me as a person.  Are you a person with thoughts, feelings and many talents? Are you uncoordinated or good at sports?  <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">As an adult, you have some control over how you define yourself.  If you want to single out a single characteristic, you can make that known.  As a child, I am still unfolding.  Neither you nor I yet know what I may be capable of.   <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">2.  My sensory perceptions are disordered.<span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">  <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">Ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me.  The very environment in which I have to live often seems hostile.  I may appear withdrawn or belligerent to you but I am really just trying to defend myself.  <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">In a Supermarket, dozens of people are talking at once, the loud speaker booms today’s special, musak whines from the sound system, cash registers beep and cough, a coffee grinder is chugging.  The meat cutter screeches, babies cry and the fluorescent lighting hums.  My brain can’t filter all the input and I’m in overload! <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">The fluorescent light is too bright; it makes the room pulsate and hurts my eyes. Sometimes the pulsating light bounces off everything and distorts what I am seeing - the space seems to be constantly changing.    <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">3.  Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to).   <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">It isn’t that I don’t listen to instructions.  It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “*&^%$#@, Billy.  #$%^*&^%$&*………” Instead, come speak directly to me in plain words:  “Please put your book in your desk, Billy.  It’s time to go to lunch.”  This tells me what you want me to do and what is going to happen next.  Now it is much easier for me to comply. <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;"> 4.  I am a concrete thinker.  This means I interpret language very literally.  <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">It’s very confusing for me when you say, “Hold your horses!” when what you really mean is “Please stop running.”  Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “this will be easy for you to do.”  When you say “It’s raining cats and dogs,” please just tell me “It’s raining very hard.”   <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">5.  Please be patient with my limited vocabulary.<span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">  <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">It’s hard for me to tell you what I need when I don’t know the words to describe my feelings.  I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express.  Be alert for body language, withdrawal, agitation or other signs that something is wrong. <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">Sometimes I memorized phrases from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to.  They may come from books, TV, the speech of other people. I don’t necessarily understand the context or the terminology I’m using, but it means i can come up with a reply. <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">6.<span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">  Because language is so difficult for me, I am very visually oriented.  <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">Please show me how to do something rather than just telling me.  And please be prepared to show me many times as lots of consistent repetition helps me learn. <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">A visual schedule is extremely helpful as I move through my day.  It relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations.  <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">7.  Please focus and build on what I can do rather than what I can’t do. <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.”  Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided.  Look for my strengths and you will find them. There is more than one “right” way to do most things. <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">8.  Please help me with social interactions.<span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;"> <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation.  If you can encourage other children to invite me to join them at anything, it may be that I’m delighted to be included. <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">9.  Try to identify what triggers my meltdowns.  <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you.  They occur because one or more of my senses has gone into overload.   If you can figure out why my meltdowns occur, they can be prevented.  <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">10.  If you are a family member, please love me unconditionally<span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">. <span style="font-size: 12pt; color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Arial; mso-fareast-language: EN-GB; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri;">Banish thoughts like, “If he would just……” and “Why can’t she…..”  You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it.  I did not choose to have autism.  But remember that it is happening to me, not you.  Without your support, my chances of successful, self-reliant adulthood are slim.  With your support and guidance, the possibilities are broader than you might think.  I promise you – I am worth it. And finally, three words:  Patience.  Patience.  Patience.  It may be true that I’m not good at eye contact or conversation, but I don’t lie, cheat at games, tell tales on my classmates or pass judgment on other people. Look past what you may see as limitations and see the gifts autism has given me.

Mike Seeney's Autism Awareness page

Mike Seeney's Autism Awareness page

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