Autism, the puzzle piece that refuses to fit, and thank goodness for that

I’m dropping out of school!”

The words ring in my ears.

Desperation.  Hurt.  Anger.  Anguish.

I see all of these things when I look into his eyes.

Love…

Don’t talk mum, I am DROPPING OUT OF SCHOOL!”

He has reached implosion point.

I’m 18, I don’t fucking well have to stay in school.”

It’s true, he doesn’t.

But I want him to.  For so many reasons.  For the reason that he only has 15 weeks of actual school left.  For the reason that he has fought so hard over the last 13 years to make it this far.  For the reason that finishing school will help boost his self esteem.  For the reason that he will know that despite what the world constantly tells him about being autistic, he can and does achieve things – great things.  For the reason that I know that this is fear that is driving his meltdown.  For the reason that I want to be able to hold him at the end of the year and say “You did it, Master J, you showed the world and you did it.”  For the reason that finishing school will enable him to follow his dreams.  For the reason that he is funny and smart, and beautiful and kind, and I don’t want not finishing school to in any way diminish that spark.  But mostly for the reason that he has fought too damn hard to call it quits now.

But I can’t say any of that.

I sit with him for a few seconds.  I watch as his breathing calms down, as his eyes dart towards me, and back again.

Eventually….

It’s so hard Mum!  It’s too much.  There is too much work, too much stress.  They keep going on about the fucking ATAR score and how much we have to do.  I can’t do it.  All that work, it hurts my head.  Plus, the kids, they all want to drink and some of them do drugs.  That’s bull shit.  I don’t want to do any of that stuff.”

Life is and always has been so black and white for him.

Do you find that isolating?” I ask.

I guess so.  I just hate it all.  I can’t do it any more Mum!”

Mr C and I look at each other, our hearts breaking.  How we wish we could have found an educational system that worked for our son, rather than reminded him daily of how he fell short.  We thought a small, non-selective private school would suit him better, but by age 15, Master J was suicidal.

I remember that day well.  I shudder.  Are we heading down that same path?  Should we be allowing him to drop out?

I speak about this to my friend a couple of days later, Master J back at school after a day’s rest at home.  As I drop him off, I am reminded of how every day I feel like I am dropping off a lamb to the slaughter.

Why doesn’t he do an Unscored VCE?”

I have no idea what that is.  I have never heard of it.

My friend tells me that it is where those students who struggle with school, and who are not planning to go to university, are given the choice to simply not write the exams.  They still get a VCE Certificate to recognise their 13 years of educational effort, but they are not given a score (hence the reason they cannot attend university).  They still have to do the work, pass the tests, do the homework, they simply don’t write the exams.  It relieves so much pressure for those that need it.

I am so excited by this information that I could pop.

Master J has no intention of going to university next year.  He does have plans to go to university at some point, but wisely came to us with a plan to do a Diploma at a small college first, followed by a degree at the same small institution, to better ease himself into tertiary education.

I rush back home, immediately email the school.

They email back: “We don’t offer an Unscored VCE as a matter of policy”.

What the fuck?

I call VCAA, the examining body for VCE.  I am told that an Unscored VCE is not actually a thing. I am told that it is a loophole, created by the fact that they cannot legally force a student to write exams, that schools leverage to better accommodate those students who find exams stressful, or have mental wellbeing problems, or who need support.  They don’t like to encourage it, but understand that it is better for the student in certain circumstances.  They tell me that the ATAR score is only of benefit to universities in their selection process.  It is the sole reason the ATAR score exists. The school cannot deny us the right to an Unscored VCE I am told.

My friend had mentioned that her school, an independent school, had offered this Unscored VCE and so I look for others that might be the same.  Within a short period of time, I have identified at least 20 schools in my area who offer this amazing thing, created by a loophole.  They actively promote it on their websites as an alternative for those kids who struggle.

Why was I not told about this?  Why?

I email the school and request a meeting with regards to the Unscored VCE.

I am given a time, and told that the headmistress will be there, and that I am to bring Master J with me.

The headmistress is not my favourite person.  She is the person who suspended Master J from school after he confided in a friend that he was suicidal.  She is the person who accused me of bullying when I questioned why they hadn’t contacted me firstly about the suicidal thoughts and secondly about their decision to exclude him from education for daring to confide in a friend.  Her response was she had to protect the other students.

That one sentence is all I have heard throughout Master J’s secondary education.  “It’s not fair on the other students if we give him too much support.”  “It’s not fair on the other students if he gets extra time in exams.”  “It’s not fair on the other students…” ringing ringing ringing in my ear for 6 fucking long years.

What about the needs of my son?

I arrive at the school.  I am ushered into the headmistress’ office.  A cold and barren place, not welcoming.  Aimed to intimidate.  Master J joins us.  We are given a lecture on the downfalls of an Unscored VCE.

You do know that this closes many, many doors.  That once you go down this path there is no going back.  Our experience has taught us that every child who has gone this route has regretted it.  Outcomes are never good either. Whilst we know we can’t legally stop you from doing it, other schools that are offering it, aren’t being strictly legal either.  They certainly shouldn’t be promoting it the way that they do.  And Master J, don’t you think for one moment that just because you are doing an Unscored VCE gives you the right to slack off!  You will have requirements, and you have to still pass your in class tests, and you will still have to submit homework.  You still have to meet the requirements of a VCE.”

There is an undertone in her delivery.  An undertone that says what we are asking for is for Master J to be handed his VCE purely on the basis of his disability alone.  (A subsequent email confirms this).

My blood boils.  How the fuck dare this woman?  How the fuck can she even begin to say she is an educator?  I glare at her, caught in between that moment where I have a choice.  A choice to yell at her and ask her what the fuck she is doing, yell at her to insist that she put my sons’s mental well being above and beyond any ATAR score required of him; or to calmly accept what she is doing, to get to the end goal.  The Unscored VCE.  I plumb for the latter, but not entirely without a bit of a fight.

You are right, you do have to legally do this for Master J, and it is only closing one door, not many – that is the door to university in 2017.  Once Master J has completed his Diploma next year, he can attend any university he likes.  And schools use this loophole to make sure that they are serving the needs of their students on an individual basis. And I can assure you that Master J will do all he can to meet the requirements needed to get through this final year, as he has done with all the years before this one.”

She now glares at me, her eyes narrowing.

Well, we need both you and Master J to sign this.”

She thrusts a form in front of me.  I glance over it.

This is a disclaimer.”

Well, yes it is.  We need to protect ourselves against you changing your mind later when it is too late.” she says.

I am not surprised.  This is the cookie cutter, mass produced education of our time.  Globalisation starts young these days.  Conform or fucking die.  Individualism be damned.

I grab the pen.  Sign it.

I give the form and pen to Master J.  He is 18 now and as an adult is required to sign it too.  I make sure he understands what the school is protecting itself against.  I make a note that no mention of support for Master J is noted in that disclaimer, bar one sentence that mentions the school will continue to educate him.  How good of them.

We leave the office.

How do you feel?” I ask Master J.

Like a failure.”

I grab him by the shoulders.

Now you listen to me.  You are not a failure, you are brave.  You know why you are brave, because you recognise that exams are stressful and the work load is too much.  You recognise that there is absolutely no point putting yourself through all that stress when you don’t need it anyway.  You recognise that even universities and colleges are moving more and more away from the examination model in favour of active participatory assessments.  Master J, you are doing the right thing and don’t let them beat you down about this.”

Master J nods and walks off.

I am screaming in my car.  A visceral anger rises up within me.  A maternal, primordial scream escapes my body.  How the fuck dare they do this?

I get home to find an email waiting.

Master J has had too many days off without explanation which puts him at risk of not getting his VCE Certificate.”

I stare at the screen.  I ask for the dates of absence and which ones have no explanation.

I am contacted at 8am the following morning by said headmistress.  I am told that I need to get a Drs certificate for each and every absence.  I am confused.  I thought a phone call from a parent was enough.  Only if they haven’t taken off more than the allowed unexplained absences, apparently.

I’m starting to feel victimised.  I’m starting to feel that because I dared to force the school, the headmistress, to allow my son to do something that she didn’t believe should be on the table, she was going to make it as difficult as possible for us.  I listen as she speaks.  I argue.  I question.  I resolve a plan.

I phone my friend, a GP.  She agrees to write certificates for all the dates he has had off.  I deliver them to the school.  Fuck you headmistress.  You want to take me on.  Fine.

No longer able to contain myself, I write an email to the school requesting a meeting with his care team.  I receive another one informing me that the school are doing all they are obligated to do and will do no more.  No meeting for me then.

Frustration. Anger. Desperation.

Master J comes home from school.

I’m dropping out!”

I want to die.  I want to give up.  I want to stop having to fight every single person, which at this point in time feels like everyone who isn’t us.  I want to stop having to constantly fight for acceptance of my autistic child.  I want to stop having to fight for inclusion.  I just want to stop.

Another day off school.

Today is Saturday.  Master J is at a small college, checking out the courses he wants to do next year.  Animation or Game Design.  He’s leaning towards Game Design.  He has his own gaming room.  His man cave, he calls it.  He has his pet Blue Tongue Lizard and his computer.

He is happy.

Mr C has just called me.  The day was a success.  His interview is booked and they will let us know there and then if he has got in.  They told Master J that his Unscored VCE is absolutely fine, and that the apprenticeship in Digital Medial and Printing he completed this year is considered higher than a VCE anyway.  They are hoping he chooses them as an institution.  They only have classes of 10-15 students, are very hands on and are all about collaboration. Mr C tells me that Master J is so excited and has renewed motivation to see through the final school year.

He is happy.

And that is the point, isn’t it, for our children?  That is why us parents fight.  Especially us parents of autistic children.  All we want is for them to be happy.  Or at least content.  How they find that contentment is not dependent on the level of their education.

Society has MADE it dependent on their education because we MEASURE their worth by how well educated they are and how much money they earn and things they own.  But it doesn’t have to be that way.  We can let them know that no matter who they are or what level of education they have they are WORTH HEAPS.  That their worth as a human being is not diminished because they did not receive an ATAR score, or finish school, or get a degree.  What matters is that they are doing something they love.

Love.  Contentment.  Peace.  Self Worth.

That’s what counts.

Until next time,

SHW Signature AmyG Font

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7 thoughts on “Autism, the puzzle piece that refuses to fit, and thank goodness for that

  1. I think I stopped breathing a few times reading this. I swore, more than once. I want you to know, and Master J to know that kids like him are shining beacons of how well autistic kids can do, for kids like mine. I’m sorry that it has been in spite of the fucking education system and not because of it.
    Dani x

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  2. Having not one but four children with physical disabilities – one of whom is also on the ASD and all of them neglected SO BADLY in the private school sector (“Come to our school! We have a small, caring, Christian environment!” HMPH!) I screamed along with you.
    In the end I sent my youngest to the local, public secondary college and she received so much more understanding and support……even when after first term of VCE she wanted to drop out. They supported her to “drop out”, encouraged her to dabble in short courses at the local TAFE to see what she wanted to do and now she’s at uni doing what she wants to do.
    The VCE score is not the be all and end all of their future. It’s never too late and I look forward to reading of your son’s successes in pursuing a great and interesting and HAPPY future!
    (and I hope the Headmistress has to eat humble pie!)

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  3. Having not one but four children with physical disabilities – one of whom is also on the ASD and all of them neglected SO BADLY in the private school sector (“Come to our school! We have a small, caring, Christian environment!” HMPH!) I screamed along with you.
    In the end I sent my youngest to the local, public secondary college and she received so much more understanding and support……even when after first term of VCE she wanted to drop out. They supported her to “drop out”, encouraged her to dabble in short courses at the local TAFE to see what she wanted to do and now she’s at uni doing what she wants to do.
    The VCE score is not the be all and end all of their future. It’s never too late and I look forward to reading of your son’s successes in pursuing a great and interesting and HAPPY future!
    (and I hope the Headmistress has to eat humble pie!)

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    1. Hi there Leisa, Thank you so much for your comment. We did look at the state education system too but like you, opted for a small school that touted a supportive ethos. Unfortunately by the time we realised the systemic issues with the school, our son simply refused to change schools. Thankfully, the end is near, but I will never ever recommend this school to anyone who has a child on the spectrum. I am really glad the school move for your children has been a positive move.

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  4. Hi Sarah, I have 2 diagnosed with ASD … 1 with Anxiety…. Education systems are fraught with pitfalls. To help him cope with the stress can I suggest that we have successfully used rescue remedy, drops and jubes. I also pulled the plug and put my Daughter into Distance Ed. I know it is a bit late for you now for that but it helped us get thru the last 2 years of High School. She is now at Uni doing her passion Psychology. My son did his School Certificate they were unsure he would pass so suggested a Living skills certificate instead of SC now the ROSA… guess what he blew them out of the water…. achieved his ROSA and is now doing distance TAFE in ICT …. do you know about http://www.facebook.com/specialisterneaus YOU will get there as your son has awesome parents who want him to reach his potential.

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    1. Hi there Alice, thank you for your comment. I haven’t tried Rescue Remedy so might give that a go. As noted below, we did try to get our son to move schools, or even be home schooled, but he was adamant he didn’t want to move, largely because he did not want to give up, he wanted to go the distance. I am so glad that there is a success story for your children, as I am sure our son will have too. Also, thanks for the resource of Specialisterne. xx

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