Thursday, June 12, 2014

ASD assessment / diagnosis

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.

9 comments:

  1. Lauren, this is a beautiful post. It will be a help to others who are going through the same thing. One of the greatest aspects of blogging. I hope you can put the worry on pause now that he has a diagnosis. For now, try to enjoy the relief you are feeling. He will now have access to the help that he deserves. And so will you. He will not change in the eyes of those that know him. Do not think of it as a label. If you are interested in a feature raising awareness and telling your story, I would love to do this at some point. Thinking of you. Hope to meet you at #Britmumslive xxx

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  2. Aww what a wonderfully written post, I was welling up (though I am pregnant and hormonal too!) must have been so difficult being so sure and so unsure at the same time. I am glad you got the diagnosis that will help you going forward, but also sorry that you are going through this and like you say there are so many more questions about what his future holds. Best of luck! Xx #pocolo

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  3. This is so good to read! A new chapter starts with his diagnosis. Its nice that you are not letting this define him. I love your positivity =) #pocolo

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  4. I think it is sad that it has taken so long to get a diagnosis, but hopefully now that will enable you, and you family, to move forward with less anxiety. Knowing that you have access to specialist support can only be a good thing x #pocolo

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  5. Sad that it takes so long, we had to wait years but that was because they kept sending us from one place to another since we were on the border for different centres! In Suffolk though a diagnosis is only that, you are then discharged with no further support sadly.

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  6. I'm glad you finally got the diagnosis for your son, which as you say will now allow access to various services. I really hope the services are useful and helpful to your family! Time to take stock, and breathe.... #PoCoLo
    (Bumps & Grind) x

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  7. I'm glad you have finally got a diagnosis after so much worry - as you say, it must be a mixed feeling of relief and uncertainty about the next step, but it's a big positive to now have the ball rolling to access the support you need. Thanks for coming over to my blog from PoCoLo, pleased to find your blog too. All the best x

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  8. This brought back the memories of the day my J got diagnosed, well done for being strong. This is the start of getting him loads of help, I am so glad I done it with my son, he is now 11 and without it he wouldn't have 10% of the education and help he does now xxx

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