It has been a year since the first appointment with the GP that got the ball rolling. A full year of waiting and wondering. In that time I have read various books, joined various groups, spent many nights typing questions in to google, looking for what? I’m not really sure. Advice, strategies, answers, reassurance. I think I thought if I filled myself with as much information I would be better prepared for the diagnosis, if / when it came.
I’ve tried to put all of the worries to the back of my mind, I knew this was going to be a long process and spending a whole year worrying was going to do no good to anyone. There have been moments, evenings where I’ve done nothing but worry. Worrying if we’d made the right decision, worrying we were just imagining things, worrying for the future. But for the most part, we’ve just got on with it and enjoyed our year.
Today was finally the day we had been waiting for, the day Neil would be assessed for ASD. I felt nervous, I didn’t sleep much, spending most of the evening on the sofa, over-thinking things. What if they didn’t see any traits, if they thought we were making it up? It’s hard to describe being so sure and unsure of yourself at the same time. I fully expected an ASD diagnosis, everything we’ve done for Neil in the past year, strategies we have put in place, have all been for ASD, all of the traits we see in him point towards it, everyone that meets him sees it. It doesn’t stop you thinking, what if it isn’t though? What if everything you have been doing was wrong?
We didn’t tell Neil much, just that he would not be going to school because we had an appointment, and that some people would want to talk to him and maybe play some games. He was quite accepting of this, I’ve told him every day since last week just so he had an idea of what would be happening.
It was an early start, we had to be at the appointment at 9, and the centre was half an hour away. I felt surprisingly calm in the car, we got stuck behind a truck carrying heavy goods on the way which almost made us late.
We were welcomed in to the centre, and the three of us went in to a play room to allow Neil to settle in a little bit before they started. Caitlin stayed out in the car with her Granda. Neil was in quite a jolly mood, having a good inspection of all of the toys in the play room. We were there for about 5 minutes before they called us down to the assessment rooms.
Neil was taken in to one room and we went in to the room next door. There was a large one way mirror so we could observe Neil while they were assessing him. During his assessment they spent the time asking us a series of questions about his ‘difficulties’, which is probably one of the hardest things about the process. Neil is our wee man, we care for him everyday, and a lot of the ‘difficulties’ we just see as totally normal now, because it’s just part of our life.
We couldn’t hear what was happening in Neil’s room, we could only see him, and it was hard to concentrate on what he was doing while we were trying to answer questions. We talked about his social and communication issues, his motor skills problems and his sensory needs, all the while he preformed little tasks and talked to the paediatrician. From what I saw it looked like he was having one of his real good days.
The whole thing lasted about 45 minutes, which was shorter than I expected. When they had finished they asked us to wait in the playroom again while they discussed their findings, before coming back about ten minutes later to give us their verdict.
“We’ve got enough evidence to diagnosis Autism Spectrum Disorder”. For a split second I felt a wave of emotion come over me, a feeling of both anxiety and relief. It suddenly felt more real than I had imagined. While for us the diagnosis would change nothing, we would continue on as we had been, it was relieving to know that his issues were finally going to be recognised and we could start getting him the support he needs, from occupational therapy etc.
That was it, we were given a short report confirming the diagnosis, told we would receive information about training courses and referrals to OT, and we were sent on our way.
I don’t know how I was expecting to feel after we received the diagnosis. It opens up questions for the future, things I maybe hadn’t wanted to think about before, like how will he cope as he goes through school, what about when he’s an adult, will he still need support? I’d never really looked much further in to the future past the diagnosis. I suppose this is another post for another time, there is so much to think about.
For now though, I want to focus on the positives for a while. I’m happy we can hopefully now access support, and start working on his many strengths, because he’s a great wee man, and we’re not going to let the diagnosis define him.