'I want people to understand my son's needs but until then we are in limbo'
Emma Manton (34), a married mother-of-two, has so far been waiting two years for a diagnosis for her six-year-old son Thomas. The Portadown woman said:
"We started to have our concerns in late 2013 following a discussion with a nursery teacher. She wrote us a letter and asked us to take him to our GP for further referral. It is now over two years since we first made contact and asked for help.
We have had four visits to community paediatrics and eventually on the fourth visit they decided they would refer him to the assessment team.
That was at the start of July. They rang me on December 23 and said initial school assessment would take place but warned that it could be a further year before he is seen at the assessment centre. That is when they will decide whether they can diagnose him or not.
So we are two years into the journey and looking at possibly another year.
On the surface things seem okay but Thomas doesn't get a lot of social interactions. He struggles to understand facial expressions or flippant remarks.
If I said, 'Take that look from your face' he doesn't understand how you could physically peel the look from your face. Then he can't understand why his behaviour isn't in keeping with his peers and they get upset.
If he is feeling upset or angry he can't express himself and he is anxiety driven, he is terribly worried about everything.
He can't express that and he gets really angry and can't put it into words, so he has a meltdown. You have to wait for him to cool down then try to speak to him.
There is so little communication between the Education Board and Health Board.
People don't understand and he can be labelled as naughty.
I want him to be diagnosed so people can understand he has autism and that he can be understood. Without the diagnosis they can't move on and decide if he needs a statement. So he is in limbo. All those children are in limbo.
You do end up doubting yourself and think this is all my fault? We go to Pathway to Learning; we do pay for the services but the last 18 months they have been giving us great behavioural support.
Where are the priorities of the people in charge? Are those 2,000 children just forgotten? If they don't deal with the priorities now how much more help and support will they need if they finally get diagnosed? Early intervention is so important - it is the best way to go."