I need to put a disclaimer here before I go on: YES, there are extreme cases of autism where it is definitely a problem – where it absolutely interferes with the person’s ability to function in life, and where it can cause them to be a danger to him/herself and to others.  However, contrary to what the media would have you believe, this only applies to the minority of autistics, while the majority of us might not be diagnosed for years because we’ve found a way to blend in enough with society to be mainly ignored.  Just as Tourette’s is not all about swearing, OCD is not all about hand-washing, and ADHD is not all about having screaming fits and smashing up your property, so too is Autism much more than the stereotypes you see on television.

What’s more is that the books on the subject would have you believe Autism is something that only affects children – but what happens to these children when they grow up?  Do they somehow grow out of it?  Or do they just get forgotten?

As a child, I was very socially ‘difficult’.  In fact, the word ‘difficult’ was attached to me so many times that I grew to resent it.  It implied I was being stubborn and willful, when in fact I just could not help the way I was at the time – indeed, I couldn’t understand why what I was doing was so wrong.  As far as I was concerned, all I was doing was being myself.

I felt uncomfortable with friends, and yet I hated the loneliness this brought.  The truth is I am an intensely social creature, but as a child, the social expectations were lost on me, I never seemed to do the ‘right’ thing and people were frighteningly unpredictable.  I preferred to imagine they were with me, in my own private time, where I could control what they said, like a script with actors.  That way, no one could shock or hurt me.

I also developed a great passion for reading, where I would sink into the stories, fall in love with the characters, or even become the characters and erase myself from existence.  I often found it confusing being in real life social situations because it felt like the people around me had no idea what a remarkable adventurous little girl I really was…inside, in my head.

I loved routine.   If things went contrary to the plans I had mentally and emotionally prepped myself for, I felt so anxious I was prone to fits.  I would grow desperately unhappy, cry, scream, all because my parents had decided we needed to wait until the following day to go do something I was expecting to do now.  And I couldn’t explain to anyone why it left me in such a state of panic, which only served to panic me more.

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In school, I could not stop talking, could not ‘behave’, could not focus on anything that didn’t particularly interest me, could not, could not, could not….

What could I do?

I was passionate about the things that excited me.  Sure, they were often strange things, like my obsession with sharks, or black holes (at the age of 6), or the etymology of the English language (or any language, for that matter).  I felt great pleasure in working out the Quadratic Equation in Algebra class.  I loved working out detective stories.  I practised singing along with my favourite songs constantly until I could perfectly mimic all intonation and improvisation.  I never ran out of things to say, even if it was about strange esoteric subjects.  I knew everything there was to know about the Pet Shop Boys.  I could recite the entirety of Disney’s Aladdin and Hocus Pocus for you without the films playing.  I could speed-read, getting through a book or two a day, all year long.  I could always entertain myself, without the need for outside stimulus or company.  I had high ethical standards, which led to a great sense of loyalty toward those I loved.

The point is: some of it was a little crazy (and in fact still is).  But some of it has been – dare I say it? – useful.

If not for my stubborn perserverence, I wouldn’t be here starting this website or this company.  Check Mates would not exist.  If not for my loyalty and constant chatter, I wouldn’t have managed to make all these remarkable friends I’ve accumulated over the years, without whom the book could not have been made.  Without my love for reading, again, the book would not be published.  Without my tendancy to sink inside myself, I would never have become a writer.

And that’s just me.  I have since learned to integrate myself into the world – learned to ‘fake it until I made it’, studying and imitating those I meet until I blend in more.  I have reached a point in life where I am happily married, a mother, working a stable job that I enjoy and I have many great friends.  I believe my stubbornness is exactly what brought me to this place – because there are all too many people out there who came from the same position I did and have not been so lucky.

They have been too singled out in school, assimilated the abuse and the negative labels and accepted that they are outsiders.  They have struggled in school systems built for people who just don’t think like them.

Because that’s all Autism really is, in its so-called ‘higher-functioning’ form.  It’s a different brain type, a different way of thinking.  We learn differently, we require more routine and preparation, we need information to be delivered to us with some relevance to our natural passions in life, we need more focus  and patience – but then, aren’t there plenty of people out there without Autism who are the same way?

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Over the years I have heard people claim that Autism is ‘brain damage’, perhaps caused by some problem in childbirth, or the result of an abusive or neglectful childhood upbringing – that it is a disability.  Yes, sometimes it is.  But for the rest of us, I strongly believe that all we need is the encouragement to unlock our natural potential.  We are brilliant creatures with talent and imagination and intelligence, just like anyone else in the world.  When we’re given half a chance, just watch how far we fly.

To put things into perspective, I always believed others were just like me, until I read Temple Grandin’s Thinking in Pictures, where she detailed what it was like to be Autistic, stating repeatedly that ‘the general public do not think this way’.  I found myself relating to everything she said and asking myself in shock, ‘That’s not how the rest of the world are??’

Perhaps the real key to dealing with the more maleable forms of Autism is to stop trying to force us into typical social conventions and instead try thinking the way we do.  I’ve always found it impossible to imagine what it must be like to think any other way, so I can understand why it would be so hard to understand my way of being.  But it really isn’t so strange if you’re living it.

Those of us who can find ways to function in the world do not have ‘disorders’ that need to be cured with medications.  In such cases, it’s not a ‘mental illness’ or a ‘syndrome’.  It’s an entire personality type.  It’s who I am.  To ask me to take drugs to change it would be like asking me to stop being me.  And frankly, I can think of a long list of people who like me being me – myself at the top of that list!  Why should I have to go against my nature just to fit in?  Why do we find difference so thereatening that we demand conformity, despite the fact that all our great leaders, thinkers and artists have been great because they were so ‘outside’?

To me, this is normal.  So where’s the pill that makes you think like me?

Just something to consider….

Vrinda Pendred

Editor & Founder of Conditional Publications

Don’t forget to get your copy of Check Mates: A Collection of Fiction, Poetry and Artwork about Obsessive-Compulsive Disorder, by People with OCD – on Amazon and Amazon Kindle

  1. Andre Norris says:

    Wow you seem like a hell of a woman.Your husband must be proud I hope one day to be able to become more functional.I’ve been stuck in a constant state of limbo since I was about 15 I was on ADHD meds and they were helping me to get through but I was still have a lot of issues socially.Then my doc took me off of them.I dropped out of school. Tried to get back on meds but my insurance wouldn’t cover them.Became a recluse have spent the last 8 years stuck in limbo can’t drive a car I would like to learn. Haven’t moved out of my mom’s house, Still haven’t finished school.Can’t concentrate long enough work or really do much of anything. Never started dating. I’ll be 24 soon and won’t have much to say I’ve accomplished at all. But in spite of that I’m not depressed I know there are better days ahead. Only just recently have I been on Adderall and then I’ve had to spend time getting the dosage right. I feel like I have so much catching up to do because the last 8 years I’ve been in limbo kind of like that dream state at the end of the movie Inception. ADHD and Dyspraxia but mostly ADHD has been the biggest setback of my life and just now with the help of Adderall it feels like maybe I might get one last shot to turn things around.

  2. Vrinda Pendred says:

    Thank you, Andre. It has always been an up-and-down journey for me too. I think it’s important to remember that you say you’re already 24 and don’t feel you have much to show for it…but equally, you’re ONLY 24. You still have DECADES to turn that around, and it sounds like you’re taking steps. It’s a struggle for us all. And there are plenty of people out there struggling with life without having a diagnosis to blame it on, you must remember! I think a big mistake we all do is get an idea in our heads of what we would like to be…and when it all can’t happen at once, we feel like none of it ever will. Focus on one tiny tiny goal at a time. When I went through CBT for my OCD, we started at the bottom – the tiny things that didn’t affect me as much were the first to tackle. Only after I could get through that did we move on to work on something a little bigger. This went on for years – but the point is, even if the progress feels slow and small…it’s STILL progress!

  3. Beth says:

    Thank you for this, my son who is only 5 has pdd-nos and every day I look for more things to help me see things from his point and most things that I find only tell me what to look for, and to be honest I don’t need to know what to look for I need to know what he looks for and what hes thinking, some times I don’t know how to act with him, should I be more understanding with him and let him do more then I let my other kids should I treat him the same way I treat them? my questions could go on for ever and I think that this is one of the first things that I have read that helps me with what he see’s.
    Other then that you gave me hope that, he will be ok. Not that I didn’t think that he would be, but that he would adjust in to the world ok, if that makes since. He starts school next year and like the rest of my kids I am scared for him and I just hope that he does outstanding and proves the world wrong!

  4. Vrinda Pendred says:

    i am so, so happy to see this made a difference to someone. i really like how you put it – that everything you read shows you what to look for but you feel you need to know what he looks for. i could not agree with that more. when i have read books on autistic spectrum conditions, i have just read countless views on symptoms and medications, etc. but very little on what people like me actually think and feel.

    if you’re wanting to read more like this, i would highly recommend:

    * ‘Thinking in Pictures’ by Temple Grandin – a really beautiful, moving autobiography of a woman with high-functioning autism.

    * Asperger United, a quarterly magazine filled with writings by people with diagnoses of aspergers or autism of any form, all about the trials, tribulations, and the positive sides of life with such diagnoses. I don’t know where you’re located but I have a free subscription to it in the UK. You can also download it for free as a PDF. You can find details of it here: http://www.autism.org.uk/aspergerunited

    * We are considering publication of a book written by someone with high-functioning autism all about how to help your autistic child. Stay tuned for that.

  5. Susan Hepp says:

    I have been thinking about this very subject recently!
    The public is so focused on Autism right now (as well they should). They worry and wish and hope for those with Autism, and how they will cope and function in this world. Autism tends to be described as “being in your own little world”, and that no one can reach you, break through to you.
    But this seems awefully familiar… Are not the GENERAL public in their own sense “autistic”? When you see people endlessly hidden behind cell phones, ipods, computers and texting pads? I have seen first-hand, people ignoring others in order to text or listen to music….They cannot be reached. How is that so different?
    It’s like a self-imposed autism. Makes me think, anyways.

  6. kimberley says:

    I love this piece you have written it sound like so much the same as the way I think and what I believe. This is the type of thing I write about when I talk about my aspergers, actualy I have been thinking so much about similar things recently, that just last night I wrote about perceptions, which goes along the same lines as this. I realy love the way you have written this and I can so relate, so many people are about changing people like us but say very little about understanding us.

  7. paularoberts says:

    sometimes i just want to die.i have short term memory ,find it impossible to have a relationship with a man,as i can only live on my own and can only tolerate people in very small doses.i need medication,as without it i would be suicidal most of the time.trying to learn anything new is very overwhelming for me,and being in crowds is overwhelming for me,and my paranoa without meds is off the scale.i dont like people unless they are similar to me.people annoy me,and i annoy them,i find it very difficult to b with people for to long a time.and hate whats going on around me.but i just tolerate life from day to day as i have a daughter and granchildren that need me and love me.so i suppose id better stay around a while longer.

  8. Vrinda Pendred says:

    As we said at the start of that article, it definitely did not apply to the more extreme situations. We are all individuals. It was simply meant to put forth the notion that perhaps we should not be medicating willy-nilly but rather reserve that for when it is absolutely necessary, because that is what medication is there for: to help those who really do need it.

  9. carrie says:

    I have wondered all my life ,I used to read and read, and sing to records and loved my dance classes..but I was never invited to many parties but I was not bothered..however teenage years were horrible..I did not get school too slow..other kids too aggressive – if you want to pick a fight with me I think you want to really want hurt me and my reaction to this scared me so i had to avoid those kind of kids…I love my own company – I am loyal and very focused and love intensely..I did not realise other people recover so soon from broken relationship.s– the last one for me took 7 years until the pain stopped…I now see my siblings with autistic kids…so they say – they all seem ok to me but not very socialable…I am ok with social situations but not ruled by them..people find this uncomfortable – I dont play by anyone rules but my own and my own morals are a bit harsh to my life I realise now…yet what am I …I know I dont think like others and that has always been so..and my short term memory seems to get worse as I get older and the realisation that other people are being left alone and feeling lonely bothers me ….I feel now I can reach out the those people whose loved one are gone ..or simpy their kids have moved on and we seem to relate so much better…nice ready your site and feel encouraged by it…I so wish i had someone to share my love and speed of reading with…now down to 2 books a day on a day off …love to read..best thing ever…

  10. Vrinda Pendred says:

    Thank you so much for sharing your person story. I personally think there needs to be much more education provided to teachers about these sorts of diagnoses, so they understand the students and don’t force such difficult social situations on them.

    Vrinda Pendred
    Founder of Conditional Publications

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