Last summer my eldest daughter P had a vast array of tests (including an endoscopy and colonoscopy) performed on her stomach and bowel. It was a long time coming. Although she was only five, we had been battling with food sensitivity, sleep problems and challenging behaviour for three years at that point. She ticked many boxes for various gut problems, and we were convinced that she had something like crohn’s or celiac disease.
Our initial appointment with the consultant was through the NHS, and during the time we were waiting for it to come through we made enquiries with our family medical insurance provider that my husband receives as a benefit through work. We discovered that we could use our cover to have any procedures that needed doing privately, after that first appointment we booked P in to The Portland Hospital. Arranging this couldn’t have been simpler. We called the consultant’s secretary, she offered us a couple of dates and booked us in. If anything we were a little shell shocked about how quickly it was all going to happen.
This was the first time that P would be going into hospital, and it was never going to be a ‘pleasant experience’. I cannot explain the worry that goes through your mind as a parent when your child is under general anesthetic, but The Portland made it as easy on everyone as they possibly could. You can read more about our experience here.
When these tests all came back within normal range, and we realised that there could be something else at play, I went to see our GP. She agreed that it sounded like further investigation needed to be done, but also warned me that CAMHS services had been cut to the bone and advised me to once again speak to our insurance provider and see if we were covered. Thankfully we were, they told us we could only have two appointments. We needed to ensure that we got in front of the right person first time.
Once again this was made really easy by The Portland being so helpful, and within a matter of weeks we were sat in front of Dr. Kukendrarajah. She is a leading figure in paediatric neuro-disability, and specialises in the autistic spectrum.
I wanted to make it as nice a day as possible, so took P on my own to have some mummy daughter time. We got to Dr. K’s office early, she was running a little bit late, and the first assessment took just over an hour. This meant we were there for the best part of two hours and the doctor got to see P’s full range of emotions. The so-called angel child quietly colouring in her waiting room. The irritated child slowly losing patience. The classic autistic meltdown complete with name calling, kicking and breaking things.
I left The Portland with Dr. K’s words ringing in my ears.
“Without a doubt it will be high functioning, but there is definitely something going on here.”
At last we were getting somewhere. I wasn’t a crazy overly neurotic mother. Our daughter probably had autism. It certainly didn’t feel like news worthy of celebration, but it didn’t come as a shock either.
Dr. K gave me lots of information, and said that she would be in touch the following week with our GP, and also send me questionnaires for hubby and I to complete, and give to P’s teacher. Once everyone had filled in the forms and sent them back to her, we could book our next appointment.
This happened about a month later – we went through all the answers, and Dr. K asked us even more questions. She then told us that P met the criteria for a diagnosis of High Functioning ASD, and asked if we would like to contest this. She informed us that we could have an independent assessment for a second opinion if we wished, but we declined. Dr. K was just confirming what I have known in my gut for a very long time.
That was in June, and marked the beginning of our autism journey. It’s been a long road so far, but we are making progress with our girl. Our current milestone is telling P that she is autistic, which we plan to do this weekend.
Although I’m a huge fan of the NHS, I feel fortunate to have had private medical insurance through hubby’s work to jump the queue for this. There is nothing worse than being at the mercy of having to play the waiting game, torturing yourself with worry over what’s wrong and how to move forward. Especially when it comes to your children.