No youngster should have to spend their childhood stuck indoors and have no contact with the outside world.
But unfortunately this seems to be the case for many toddlers in Horsham who have been diagnosed with autism, according to a group of parents who have said the town offers very few services for them and their children.
Four very concerned mothers from Horsham have called for there to be more centres to accommodate youngsters with autism aged up to five within Horsham as they are currently struggling to get their children the treatment and therapy they need.
Katherine Daw-Hunt says she has been crying out for these services for years. Her eldest son, Harry, who is now nine, was born with autism and was diagnosed when he was just two years old.
She said: “It’s not right. From zero to five there is nothing for these children.
“It seems to be like, ‘we will diagnose your child but we can’t offer any services until he’s five so have a great three years and enjoy the fact you cant go out or do anything’.
“If you have got other siblings, especially if any more of those siblings have needs as well, have a nice time sitting in your front room for the next three years because there is nothing appropriate you can go to. It is not right.”
Once the toddlers reach five years old they are able to go to school, whether that is a special needs school or a mainstream school, where they can be helped and treated. But Katherine says this is far too late as they should be being treated right away to prevent problems in the long run.
“The earlier something is found, the earlier that therapy is installed and the earlier support and services are put in that child’s package the better, so why on earth are they starting it from five?” she said.
“I am just fed up of being in this circle, meeting exhausted parents and exhausted families that always say I don’t do this or I can’t do that, it’s so frustrating and it’s upsetting because they should be able to. I should be meeting parents who are saying this is being provided and this is happening and we can do this and we can do that. That is how it should be.”
Another mother and friend of Katherine’s, Helen Potter, also has two children who suffer with autism. Like Katherine she has already been through the process with her eldest son Lee and is currently going through it again with her youngest son Ryan.
She said: “There is nothing else. There is nothing like sports activities or gymnastics or anything else like that to try and help them with therapy, it all starts at five, nothing earlier.
“If you get the therapy in early it will help them later on.”
Currently the only places in Horsham that both mothers said are available for them and their children to attend are the Springboard Project in Hurst Road, and a class at the family centre on Tuesdays.
Other than that, they say they have to travel around West Sussex to different classes and centres for appointments and therapy sessions which can prove difficult.
With the continued growth of Horsham, both parents agree that these services should be available more locally.
“It frightens me how quickly Horsham is growing, it is already difficult enough to get an appointment,” Katherine said.
“They are saying it is not needed here, but it is with the amount of families moving into Horsham.
“Crawley gets a lot of services because of the population numbers, but people in Horsham, especially those who don’t drive, don’t want to go to Crawley all the time, we want it locally.”
Helen added: “They have started these at Crawley but there are not always direct buses and it is not easy to take our children through Crawley town centre.
“Some of the stuff is in Worthing but again you have to drive to get there.”
Sarah Willis is another mother who has experienced the lack of services in the town and struggles to get to other centres around the district because she doesn’t drive and finds it difficult to take her son on public transport.
But she said her main concern was with lack of information available to parents of Horsham who have just found out their child has been diagnosed with this life-changing condition.
“There is no information to point everyone in the right direction,” she said.
“The few things we do have, you don’t get told about. There is no-one to give you the information you need. It is only through other parents that you find out about it. There are no leaflets of all the useful things, there was a website which wasn’t working so you have to find it yourself.
“You don’t know where you are with it.”
These services that the group are crying out for are not just to benefit their children, but also to give the parents a much needed break from being full-time carers.
Katherine said: “It is very difficult to look after all three of my children especially when they all have different needs.
“I always find it is my Harry that is put in places so I can take my other two out. That’s not fair on Harry, he does not always want to go to play schemes all the time.
“It is very stressful. Without happy unstressed parents, how can we support them? How can we guide them properly when we are not getting supported or guided ourselves?”
Sarah added: “you can spend all day trying to do one simple activity that another family could do in a hour because of the mobilisation it takes to get everyone somewhere and then someone melts down and you have to start again.
“Our summer holidays were so limited and the only time I could take my two girls out were the three days my son was here, at the Springboard Project, over the six weeks. That’s not fair on them.”
Council welcomes feedback
In response to the concerns raised by parents a spokesperson for West Sussex County Council said:
“We are concerned to hear that families are struggling to get the support they need and we welcome feedback from families as the information they can provide about their personal experiences will help us to improve services in the future.
A great deal of advice, support and services have been developed in recent years for families with an autistic child under Short Breaks for Disabled Children, where we fund many providers across the county to work with families, many of whom focus on autism.
However, we recognise that there are always ways in which services can be improved and we are working closely with partners organisations and agencies, children, young people and families affected by autism to ensure that we provide and commission services where individuals get the support that they need, when they need it.
Part of this work involves building a network of support for parent carers by linking up the many parent groups that operate independently across West Sussex to support parents. We are aware of three support groups which operate in the Horsham area.
Families can find out more information about Short Breaks by emailing firstname.lastname@example.org
A directory of short break services can be found at www.westsussex.gov.uk by searching ‘short breaks’.
Advice and support can also be accessed via the West Sussex Parent Carer Forum.”