With mental health hitting the headlines and the wait for autism assessments recently being put under scrutiny, I thought I would talk about our 12-year-old daughter’s struggle with her autism and what a diagnosis will now do to help her.
Since our daughter was born, she has suffered from Ehlers Danlos Syndrome, which is a connective tissue disorder. We spend many years under the care of doctors and consultants trying to help her deal with the symptoms and make her as strong as possible.
As she grew older, we started to notice signs that couldn’t be explained by her condition. She would get very nervous about being outside with any type of bug. Even the smallest ant would cause her to become extremely distressed. She was also showing physical signs such as shaking her hands and body banging. She had an abnormally strong fear of doing something wrong and couldn’t gauge when someone was angry with her or someone else in the room.
It caused my wife and I to seek the help of our doctor to see if there was anything we could do to help her. She referred us to the local children’s mental health team but gave us the warning that it could be months before we heard anything. Unfortunately, she was right, it was almost two months before they were able to see her.
We all had an appointment with a member of the team, and after some background, they decided to try and do some talking therapy and give her some coping techniques for her anxiety. However, despite this, it didn’t seem to make her any better at dealing with her anxiety or her symptoms. We even tried to involve her primary school in the hope that they could do something for her. Although they did try to reassure her when other children were told off and tried to give her support, they couldn’t do more without some official diagnosis.
It was at that point our consultant decided to refer her for an autism assessment. They thought she was displaying some of the symptoms and so thought it would be a good idea. This began the long wait that would eventually lead - over a year later - to her assessment and confirmed diagnosis.
By this point, she was now at secondary school and was being helped a lot more than before. However, as with all schools, the confirmation of a diagnosis is the only thing that can give children like our daughter the help they need. We were told after the assessment that our daughter was at the high-functioning end of the autistic spectrum and displayed many of the signs. For my wife and I, it was a relief that our daughter would finally get help for her though, it was guilt that she was like this. She felt that she had let us down and that she wasn’t “normal”. Having mental health issues myself over the years, I know how she feels, and both my wife and I spent a long time telling her how loved and cared for she is.
A measure of how important it is to tick the box was when we told the school, and they congratulated us on getting the diagnosis. We don’t care what her abilities or her disabilities are, we love her just the same. We would never have even gone through this long and difficult process if we didn’t have to. But unfortunately, to get any type of help, you need to tick the box.
I feel sorry for other parents that are going through this at the moment. It can sometimes make you feel frustrated and alone, but there is light at the end of the tunnel.