Autism" - it sort of just hangs there doesn’t it. Unless you know someone with the condition, or have a child with an autistic spectrum disorder (ASD) or have the condition yourself, it’s hard to explain to others the multitude of feelings and day to day realities that go with that "word".

Our boy is almost five now and when he was diagnosed with an ASD over two years ago, it was a devastating blow.

The diagnosis was nothing compared to what came afterwards. The ignorance, the fear, the arrogance from professionals, and the general uncaring attitude we have encountered in our own community -its all been so very tedious.

Our beautiful and gentle little boy suddenly had a label and it seemed the whole world had suddenly turned on him. Like other parents who have contributed their story to this website, our boy experienced a very sudden and dramatic "lack" of friends. At the age of 2 before he was diagnosed, he was the darling of our street, one of the youngest kids in the area. Other kids loved to come to our house to play with him. They had no idea the fact he didn’t talk at age 2 was going to be a future "problem", nor did he.

After diagnosis, and thanks to a neighbour who "spread the word" about our boy's new label to anyone who would listen, the kids stopped calling. The same neighbour who thought autism was "catchy" no longer allowed her own children to come near our house for fear of catching autism. I kid you not!

This is just a small vignette of what it’s like to have a child with an ASD in Northern Ireland today. I can’t count the dozens of ridiculous stories we have encountered due to people's ignorance. Is this really 2008? It is time Northern Ireland got on track with the rest of the world regarding disability. Its embarrassing really that our attitudes are so outdated. More than embarrassing, it’s hugely damaging to children like my own.

Of course, the biggest problem with having a child with an ASD is not the neighbours, but the lack of services and the arrogance from so-called "professionals" who think they know your child better than you do, and think that you, as a mere parent can't possibly teach your child or help him.

As a family, we made a personal choice not to send our child to a special school. We wanted him in our own community, with kids who lived near him. The special school system and school in general in Northern Ireland is rife with politics and is more to do with money saving than it is to do with providing the best possible education to our children. The fact that the school boards have spent hundreds of thousands of pounds over the last 3 years fighting parents at Tribunals backs this up. We believe that if the government continues to build special schools, then parents will continue to send their children there. I only speak for one condition here - Autism. For children with autism, I find that the bar has been set very low in the special schools that I have seen and compared to the United States or Canada children often remain in the special school system throughout their school years with very little hope of entering mainstream. It’s like a catch 22 situation.

But, I digress. Whilst in mainstream school our boy never got any invitations to other kids' houses but at least he wasn’t being ferried on a yellow bus miles away every day where I couldn’t drop him off or pick him up. I was able to watch him every day at school and have a proper chat with the teachers about his work and play.

He coped for a while in the local mainstream school, but really he wasn’t learning anything.

The few courses that the teachers had enrolled in about autism, taught them to teach our child with a "one size" fits all approach. Our boy is an individual first, and his label comes way way down the line after that. But, unfortunately they could not see that and they messed him up. He became very frustrated at school and it became a no win situation. The classes were way too big, even too big for kids who did not have difficulties, and the teachers were starting to take their frustrations out on my young boy.

We now home educate our boy. He is doing great. We realised that all the frustration, the fighting for non-existent services, etc., was taking precious time away from being with our son.

This letter is to all parents out there who have been made to feel that they are somehow "incapable" of raising their child without help from "professionals".

Despite the fact I have extensive 3rd level education and a rich life experience, somehow it was still believed that because I didn’t have a 3 year teaching degree, that I couldn't teach the child I gave birth to, that it was impossible for me to understand autism or to get through to my own flesh and blood.

My boy was crying out for his mummy to take him away from the school and for a time, I didn’t listen.

I was so caught up being vulnerable and scared of making things worse that I started believing what the "professionals" were subconsciously trying to drive into my brain.

Things have changed now. Please know that you are your child's first and best advocate. As parents you all know that no one has the vested interest in your child the way you do.

If your child has a disability that is complex like autism, or requires a particular physical or behavioural approach, no one is going to know how to be with your child better than you.

I write here just to say that parents in Northern Ireland sometimes need a kick up the back side when it comes to their children. I have noticed that we give in too easily to the "professional" advice, the educational psychologist, the speech therapist, the nurse, the doctor, the OT, the TEACHERS!

Children are sponges in terms of their learning capacities no matter what label they have and no matter what someone else says about their "ability", no one can put a ceiling on the "potential" of a young person.

Northern Ireland has a long way to go in terms of recognising that persons with a disability have the same rights as those who do not.

Only parents will change the future for our children in Northern Ireland. No one else can speak for my very unique child the way I can, apart from him and until he learns to speak, I have a duty to ensure that he has a future in Northern Ireland, one that is prosperous and happy.

Its time for major parent power in Northern Ireland and to stop other people speaking for us, the charities included. They can never have the passion we have, the drive and the determination.