Saturday, March 19, 2011

A special kind of parenting...

As we get closer to the release of The Autism Experience, my mind is full of stories of parents like us - autism parents.

The book is a collection of stories from all over the world. The thing that links us is at least one autistic child in our families. I've spent the best part of two years reading, editing and annotating contributions from around sixty women. I think what we've got is beautiful and valuable and interesting and funny and really, really sobering.

It's a life not many of us anticipated. It's by no means all disastrous, but it comes with some curveballs.

There are times you feel exposed.

Like any child, an autistic child will want things they can't have or have a desire that can't be satisfied. People call the behavioural reactions to these events tantrums in NT kids, and they can be frightening and intense, but generally a child can be brought out of a tantrum with consistency and time. In an autistic child, what looks like a tantrum can often be a meltdown. A meltdown is not rational. A meltdown is not easily manageable. A meltdown needs to end before anything can be 'done' about it. An autistic meltdown can range from tantrum like behaviour to severe anxiety/panic attacks to shut down.

Having a meltdown is not a choice by an autistic person determined to have their own way. It is a reaction to the perceived uncontrollability of circumstances external to them, combined with inner circuitry that makes perspective almost impossible. They may improve with age, or may not.

Parenting your child, of any age, through a meltdown is not easy. To the untrained eye, there's no doubt you don't look like parent of the year.

There are times you feel judged.

Many of us experienced an 'eat your vegetables or you can't leave the table' moment as a child. Most of us felt very confident that we would have children who were going to eat as balanced a diet as we could afford. Autism had other ideas for many of us. Not only do we live in a world of supplements, vitamins, hidden toxins, dietary restrictions, allergies and intolerances... many of us have children who eat a very restricted range of foods.

It might be because of their sensory issues. It might be because of oral motor strength and coordination issues. It might be a medical issue - reflux or other GI conditions. Sometimes we know, sometimes it's too complex to work out.

No matter the cause, serving up the same dinner to your child night after night looks odd. It doesn't feel odd to many of us, who are working day in and out to extend our children's eating skills. But to Grandmothers, and fellow diners at restaurants (for those of us able to take our kids to restaurants)... it's clearly odd.

There are times when you are misunderstood.

When your child is unable to speak in particular circumstances, but can in others, people might think you are not encouraging them to use their voice. When your child is sick repeatedly, exhausted by simple child activities, uninterested in leaving the house, people might think you are impairing their social skills. When your child is unable to keep their hands to themselves or stay out of their peers personal space, people might think you are not teaching them self-discipline.

As autism parents, we know those people are wrong. We know those people are ignorant. We know those people are using their own lives, their own fears and their own deficits and projecting inappropriately onto us.

As autism parents, we devote our lives to our children first, and then to fighting that ignorance.

We might do it through books, or songs or blogs. We might do it through speaking and teaching. We might do it through just living our lives - holding our heads up high, celebrating the wins and not hiding the losses.

We might want to do it through acts of random violence on judgemental, unpleasant folk but generally we restrain ourselves.

So, if you see a parent struggling with their child's behaviour, and your first thought is something along the lines of, 'A good smack would fix that' or 'That child is too big for that nonsense'... please take ten seconds. Take a breath and either offer some help or walk away forcing yourself to think nice thoughts.

If you are a professional and you deal with children and parents every day, please educate yourself before you judge them and their choices.

It might not be autism, but it's something. Something that you do not know everything about.

The world can only be a better place if you can at least try to open your mind.

Given the growing size of the autism army, it's probably a good idea. We've got lawyers among us and we're not afraid to use them.


Anonymous said...


Di said...

You tell it as it is!! Congratulations on your book and to all who are in it. I look forward to reading it. x

Heather said...

congrats on the book - it will mean so much to so many!

Nicole English said...

Great post. one of my favs

Ro said...

Spot on, Valerie!
Y'know you rock? :)

Stephanie said...

Congratulations on the book! And thank you for the message.