My 'To Do' list is always long and some things take a while to make it to the top. Other parents of autistic children will understand why.

For the last couple of years I have been jotting down thoughts and reflections on my own experience of raising a severely autistic child with a view to eventually writing a book...with 'eventually' being the operative word!

I  don't have time to do this at the moment but recent conversations with other parents led me to the decision to produce a series of articles that can be read individually or combined as a 'handbook' that may be of help to others in the same situation.This is the first in this series and sets the scene as to where I coming from both as a parent and as a writer. I will be adding a new piece each week...so watch this space!

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There is a huge diversity in the ways in which autism impacts on those who suffer from it. At one end of the spectrum there are high-functioning autistics like Dr Temple Grandin and Dr Stephen Shore who are highly successful academics capable of giving valuable and fascinating insights from the standpoint of their own autistic experiences. At the other end there are those like my 16 year old son who has never developed speech and cannot get through a day without constant care and assistance. And there are all those in between.

Parents too are radically different, with each family being unique in its personalities, structures and dynamics. Myself, my son and my family are, therefore, just one tiny drop in this ocean of people struggling to make sense of what can be a very baffling condition and, more importantly, to live life the best they can in spite of it.

Our experiences are not definitive. I cannot write about 'How To Do Autism'. I can only write about how we have done autism, and hope that this may help someone else on their journey.

To start with I want to make my own perspective on having a disabled child clear because it affects so much of what I have subsequently chosen to do.

I am not a conventionally religious person at all but I do have a profound sense that each of us has our own unique path through life and that our personal and spiritual challenge is to walk it in the best way we can. Thus my feeling with regard to my son's disability has always been that it is his path to be this way and that, as his mother, it is my path to do the best I can to help him and walk with him.

I am also an appalling optimist with a finely-tuned sense of the bizarre. The combination of the two has led both me and the youngest of my daughters who still lives at home to find humour in the darkest of times...the manic laughter has kept us sane (we think).

Autism can be a very difficult condition to deal with but I must also say from the outset that throughout the whole of my son's life it has never been his condition that has caused us either the most stress or distress. The culprits in this department have always been the very systems that are supposed to help people like us and I know from the anguished experiences of many others that we are not alone in this respect.

But we'll cover all that later when we get to 'System Survival'. For now, let's begin at the beginning.

When you have a child you also have a vision...and that vision is 'normal'. No matter what your child's condition is, autism or otherwise, the one thing that goes right out of the window is 'normality'. Suddenly, a switch is flicked, the points change and your particular caboose is flying along the tracks headed straight for 'disability'.

I've listened to lots of other parents over the course of my son's lifetime and I think the one thing that goes wholly unrecognized in the field of disability is the need to help keep people's lives as 'normal' as possible. And so much in the 'disability system' works against this. Appointments, consultations, hospitals, clinics and waiting rooms cannot be avoided but listening to people it is clear that it is not the place that causes the problem...it is the role they are cast in, it is the dynamic they now exist in, it is the way they are spoken to and related to. As one mum put it,

'It is my daughter who is intellectually disabled but I swear you'd think that it's me and my husband too.'

And another,

'I know that all this is in my daughter's best interest but somewhere in it all we get lost. I feel like I don't exist as a person anymore.'

I don't believe that professionals intend this to happen but it does and it is both defeating and disempowering, which is exactly what parents don't need!

I believe that the problem lies in the dynamic of 'professionalism' where the professional is deemed to be the expert and the parent apparently knows nothing.

I do not write this as a disgruntled parent. I taught in Special Education long before my son was born where I loathed the inequity of this dynamic and did my level best to counter it whenever I could. Yes, professionals do have knowledge and expertise but so too, in their own way, do parents and this should be acknowledged and encouraged. No one knows and understands a child like the parent and acknowledging and using this is empowering and enlightening for everyone.

I have listened to so many parents say that professionals do not listen to them and that they feel they are 'talked down to' and, from experience, I would have to agree.

Again, this is probably not intentional and I believe that much of the problem lies in the language of disability itself. Here's one fairly typical example...

How often have you heard the term 'intervention' in relation to disability? Go look this word up in a dictionary and see what it says. It primary meaning is 'interference', its secondary one is 'to come between'.

Who chose this  word and why when so many better and more positive words were available? How about 'assistance', 'support', 'facilitation' or  just plain and simple 'help'?

This one word holds all the problematic connotations that parents are talking about. One mum put it this way,

'When S was diagnosed as autistic it was like they wanted to feed him into a system. It was like the only way he could possibly improve was away from us and with them. We felt useless and like we had lost him twice, once to autism and then to them.'

So, I'm going to close this first Letter from the Frontline of Autism (at one in the morning because I can only write when my son is asleep and tomorrow is looming on the horizon) by saying,

Dear Parents,

know how special you are and that no one can help your child like you can and when people don't listen just keep shouting. There's nothing so empowering as a good yell.

and...........

Dear Professionals,

there are a lot of amazing people on the other side of your desks. Be humble, listen...and learn.

Gaia Charis, Feb. 2010.