Nichola Binks and husband Ian are one of the families affected by the postcode lottery of autism diagnosis – they will have to wait until 2019 for their son to be assessed to go through the process.
“It’s very distressing knowing how long we have to wait for a diagnosis. Even though we have now known for some time how long it would take, I still feel really sad about it,” she says.
Nichola’s case was highlighted during a Parliamentary debate in Westminster Hall with Stockton MPs Dr Paul Williams and Alex Cunningham appealed for action to bring waiting times down in the borough.
“It was lovely that they mentioned Thomas personally because it is very difficult to get the help and support we need without a diagnosis,” she explains. “I am very worried about his needs being met at school.”
Thomas is now four years old and his sister Sophie is 18 months. Nichola admits life can be hard work, “Thomas is full on all the time, you have to watch him and sometimes he can be aggressive.”
Nichola first noticed Thomas was different from other children before he was two years old. “He was always running about, throwing things, sometimes he would push the other children. I was constantly being called by his nursery to collect him because they said he had been naughty again. It was awful because it makes you feel like a bad parent. I did parenting courses but nothing was making a difference. Thomas now has one-to-one support in nursery and is much more settled.”
It was at Thomas’s two-year review that it was noticed his speech and language was delayed – the speech and language therapist referred him on for autism diagnosis. Since then, Nichola has fought to get Thomas an Education Health Care Plan (ECHP) but she fears it does not go far enough towards meeting his needs for the future.
“Schools I have spoken to so far can’t seem to meet his needs. His ECHP stipulates a mainstream setting and it is hard to find the right place. I am so stressed about it all the time. I desperately want Thomas in a place where he is happy and settled. Thomas is a lovely little boy but he can be so unpredictable. He needs prompting to not push other children and to eat, to do all the other things other children just do. He repeats what you say and it can appear as though he can make his needs known. If you ask him if he wants a drink he will say ‘drink’ but he wouldn’t ask for one unprompted.”
Nichola is desperate for Thomas to be in a school with a specialist autism hub but can’t apply for them because his ECHP stipulates mainstream. “I have been told to try mainstream and then if it doesn’t work, it can be looked at again but I feel I am setting him up to fail and I shouldn’t have to do that. Everything is a struggle, a fight for the proper support and it shouldn’t be like that.”
With little family support available, Nichola and Ian find it difficult to have any quality time together, “We never get a date night. Thomas is very controlling so weekends are spent doing what Thomas wants to do which means it is hard to be able to do things for Sophie.”
Nichola spends a lot of time at Daisy Chain, “I wasn’t sure we could access it without a diagnosis but I was desperate so I invited myself along to the Links parent support group and activity days. I was determined to get help from everywhere I could. I find it so helpful. Without Daisy Chain, I would be stuck in the house a lot of the time with nowhere to take the children to play – we have been asked to leave mainstream soft play venues when Thomas has become hyper. We really love Daisy Chain, I don’t know what we would do without it,” she smiles.
26 March 2018