Autism - From the first indication to formal diagnosis.

As a parent of autistic children, one a teenage son who was diagnosed at 3 years of age with Asperger Syndrome, and an autistic daughter now aged 11, I am detailing below some of our family's experiences in the hope that it may prove useful to parents and families who are now going through the difficult process of having autism diagnosed, or suspect their child has the condition and await a formal diagnosis.

I should stress that these are very much my personal views and experiences, but we are often asked within our group - The Wicklow Triple A Alliance - to contact a parent who is reeling under the recent diagnosis that their child is autistic. For that reason I detail the experiences we have had with having an autistic diagnosis; not once but twice.

Having spoken to literally dozens of parents who have an autistic child(ren), it is usually the case that the initial alarm bells are rung not by the parent themselves, but by a relative who is able to observe with the gift of time that a child is "different". Parents who recount this period of life-changing realization often describe in much the same way as a bereavement. That may seem a little overstated but studies in the UK and USA have reported this phenomenon - that our child for whom we dreamed a happy life of friends, education and a family of their own is suddenly destined for a life of isolation, learning delay and need of constant care.

An autistic diagnosis is devastating, but there is hope, and as parents how we face this challenge will have an inordinately greater effect on our child's well being than would be the case with "normal" children. It is therefore both a unique challenge and a unique opportunity. Fintan O'Toole of The Irish Times described appropriate education for autistic children as "the opportunity to recreate a human being". That's about the size of it!

So, for what it's worth, here is my checklist for the period from the first indication of autism, to diagnosis and entry into the current Health Board/Authority system.

1. Do not panic. As big as the challenges will be for you and your family you can minimize the challenge of autism. My Asperger son is currently studying for his Leaving Cert, applying for Third Level education and has a full (too full) social life. His diagnosis at 4 years of age was so stark that we expected him to have little or no speech and a lifetime of special education - there is hope!

2. There is a period of grieving following an autistic diagnosis. We are normal, average parents who have to deal with the extraordinary challenge of autism, but the sooner you dust yourself down and seek education and appropriate therapies for your child the better. Everything in the autistic services comes with a waiting list. The experts tell us early intervention is essential, and certainly that seems to be a key issue, so do not wait to join the queue.

3. Family - now here is a difficult issue. Let us view it separately as our own family living in the family home with autism, and extended family who can support, but often do not.

For our own family we are usually referring to your spouse and your autistic child's siblings. The siblings, depending on their age, can feel very angry that their brother/sister is getting all the attention, and certainly into teenage years can turn the guilt knife; teenagers in particular do not need an excuse to be angry. Our own experience with our autistic daughter was that from the age of 4 through to 8 years she was unliveable with - she ran our home life, destroyed our already limited social life and we just hung on day to day. But in all that difficult time we ensured our other children had some form of fun and social life. We took a view that if we did not devote time and energy to all our children we risked having even greater problems later on with our "normal" kids.

For the extended family and friends there is an often-voiced disappointment that some family and friends offer little or no support and that they disappear from the radar. Unfortunately this is a regular issue for parents living with autism. I think that for a lot of friends and family they simply cannot cope, so they stay away. If the roles were reversed would we be any different? I like to think I would, but to be honest I think I would take the easy option and stay clear.

4. Social life. Getting baby sitters and child minding makes having a social life difficult. That's why support groups like our own Wicklow Triple A Alliance can often be so important, because it puts you in touch with like-minded families who may be able to offer support and help create our own social life for parents and children.

5. Guilt. At times we have felt guilty that we are not the perfect parent who spends every evening working with our autistic child on some special programme that other parents seem to manage. We are exceptional parents - we do our best most of the time. Living with autism is enough to carry. We parents are exceptional in how we cope.

6. Dealing with State Bodies. This is key to our experience. When we were first exposed to autism we took everything at face value, and believed everything we were told. So if I can give one essential piece of advice it would be this - in relation to all State bodies, from Schools to Health Authorities to Local Authorities - in any dealings with such organisations get everything in writing and keep everything in writing. We have a filing cabinet of paper relating to autism, but in securing any form of state resource it has been essential.

7. Domicillary Care Allowance (DCA). This is a non means-tested payment of approx €310 per month that an autistic child is entitled to from date of diagnosis. As always, it's often not plain sailing, so refer to point 6, pursue it in writing, and get responses in writing. At a later time I will detail the workings of the Freedom of Information Act with regards to protecting our autistic children's rights. In my child's medical notes I was described on more than one occasion as angry. They got that diagnosis spot on.

There is hope that, with appropriate education and early intervention, you will have the opportunity to create for your child a world where they can succeed despite the challenges of autism, and having had this opportunity twice I can concur with how difficult it is for parents setting out on this path. I hope this note will be of some help.