In January Helen Willis' two daughters were diagnosed as autistic. The support they have received in York has been excellent, she says - but there remains a need for more respite care

My daughters, Lucie aged four and a half and Emilie, two and a half, were formally diagnosed by the York Autism Forum in January. The severity of their condition has not yet been established because of their age, but it is expected Emilie will be the most badly affected.

Before and since their diagnosis I have been astounded by the amount of help and support that is available here in York and what follows is our experience of it.

From the age of one we began to have concerns about Lucie's behaviour and development. By two we were certain something was wrong and decided to approach our doctor. We are fortunate in having a kind and sympathetic GP who listened carefully to our concerns and gently mentioned autism as anunlikely but possible cause, at that time.

Lucie was immediately referred to a paediatrician at York District Hospital and after a short wait we received an appointment. Our paediatrician talked to us for more than an hour and a half and again, mentioning autism, referred us to the Children's Development Centre Senior Speech and Language Therapist.

Lucie was soon offered a place in one of the weekly nursery sessions held there. These sessions are run by the speech therapist, a pre-school teacher, a nursery nurse and one lovely volunteer and, apart from the obvious fact that Lucie was now being assessed by professionals, they also gave me the reassurance of having other parents to chat to and a regular source of advice and support. All the staff were willing to talk well into their hard-earned coffee break!

It was during these sessions another parent recommended the Portage Association.

They offer a regular and specific weekly home visitor and support of an educational psychologist, for children with special needs.

I can honestly say that without my home visitor I would not have been able to cope. Their common sense approach to helping parents teach their children, which has been mentioned in a previous article in this paper, has been so valuable to me and the rest of my family. This is especially so with regard to teaching Lucie and Emilie PECS (Picture Exchange Communication System) an innovative visual form of communication designed especially for autistic children. They also helped ease me through the sometimes-stressful statutory assessment process.

During assessment it became obvious that Lucie's motor skills were also delayed (the probable cause being dyspraxia), so she was then referred to occupational therapy.

While this was the only occasion where the problem of waiting lists arose, we still managed to receive regular input and advice until an appointment came through.

At about this time we began to have concerns about Emilie and again, thanks to my GP and health visitor, referral to the same paediatrician was swift. I will always be very grateful for his decisiveness in diagnosis and the sympathetic way he told me, because I was, on this one occasion only, without my husband.

In the fortnight that followed I received numerous letters and phone calls from people he had contacted on my behalf in order to provide us with adequate support.

These included referrals to Limetrees, and social services and I now have regular visits from a community psychiatric nurse and health and disabilities team worker both of whom have helped me to access many other services and resources, such as acquiring two Major buggies, disability living allowance, the Early Bird Programme, music therapy, community dental services and possible respite care. Everyone I have come into contact with has been kind and friendly and despite the stresses and strains they work under, more than willing to put themselves out on my behalf.

After finishing at the Children's Development Centre Nursery and prior to formal diagnosis, Lucie was fortunate enough to spend some time at St Paul's nursery school in Holgate. It is an excellent, state-run nursery with special needs provision and they seem to me to have actually achieved true inclusion.

Lucie really enjoyed her time there.

Following diagnosis we decided to send Lucie to the autism specific Lidgett Grove Early Years Class based at Hob Moor Primary School.

There, her much-adored teacher with many years experience of autism and the endlessly patient staff are working to give Lucie the best possible start to her education. The adult to child ratio is one to two with a maximum of eight (soon to be six) in each class. Yet again full support and understanding is given to parents. I hope Emilie will start there after Christmas.

There are many other small, but not insignificant, instances of the support I have received, but I cannot list them all here. I do not believe any more could possibly have been done in the two years since this began, there simply would not have been time!

The "but" - unfortunately there always seems to be one - is the lack of home-based, daytime and residential respite care. While I am led to believe that what there is, is excellent, the provision of it is essential if families such as mine, even though we have good support from family and friends, are able to keep functioning. I hope and I am optimistic, that as York continues to lead the way in providing appropriate services for these children they will invest swiftly in some further respite facilities.

I have chosen to write this as a way of thanking all for what they have done so far and to give hope to other parents who may be just starting with all this.

There is good provision for autistic children here in York, even if it is a little difficult to find at times, and while I would hesitate to call my children fortunate, it is becoming more and more apparent that with regard to their place of birth, they are.

Updated: 09:32 Monday, July 01, 2002