So one thing I haven’t really made that public about my family and I is the fact that, for the past year or so, we’ve been going through the steps to determine whether my daughter is autistic. Today, we got the final diagnosis, and by the fact that I am writing this, I’m sure you can already guess what the outcome was.
However, the reason why I am writing this is that I want to achieve two things;
- To say a huge thank you to the NHS staff who have worked with us.
- To let others who are either going through the “investigation” or thinking about it, know what to expect.
As such, I’m going to talk about the journey we went through, from our first concerns all the way up to today’s diagnosis. Now, I should say that autism is spectrum-based, so no child will be the exact same. But hopefully, this post will at least help people to know whether they should be thinking about it.
We’ll start this little talk by going back to when my daughter was about 18 months old. She was already very late with her speech, not saying more than about 3 words. She also didn’t really copy us with any sounds either. Those words she did know, she would say for a couple of days but then just never say them again. It was worrying, but at the time, we were told she is probably just a late talker. That put our minds at ease for a while.
However, there were other things about her behaviour that concerned us as well. For example, she was very shy and didn’t really make eye contact with people. She also didn’t really like too much attention, preferring to be in the same room as us but playing by herself.
In all honesty, we constantly thought we were doing something wrong, but couldn’t work out what it was. Not to big myself up or anything, but we were being very loving and caring, but just didn’t seem to get that much in return. She did run to us whenever one of us got home from work (we worked at different times so there was always one of us at home). But that was largely the extent of love that she showed.
A Change of Scenery
Things continued like this until we moved and enrolled her in a nursery. By now, she was 3 years old and still wasn’t talking. That was a huge concern for us, as by that age, children (for lack of a better word) normally speak full sentences. Other parents were having conversations in broken English with their kids, but our daughter would only make noises.
Then, at the nursery, we were told that she didn’t really play with the other kids. She would play near them, but not interact with them. We also couldn’t risk walking around town or near roads with her, because she just didn’t learn any sense of danger.
It wasn’t until we were speaking with the staff at the nursery (who are all amazing) that the topic of autism crossed our minds. They mentioned that they had previously had a girl with similar behaviour at the nursery who was autistic. That information played on our minds for about a month before we finally decided to book an appointment with the GP.
You see, in order to start the process of an “autism investigation”, you need a referral from a GP in order to see the paediatrician.
Getting Things Started
The appointment with the GP lasted about 10 minutes. That was all it took for the Doctor to see that our daughter needed a referral. She asked about speech and behaviour, and we explained everything that I’ve just written above. That was all it needed. We were told that we would hear from both the paediatrician and a speech therapist within a few weeks.
And so, we were left waiting. We both kind of assumed it would be months before we would hear anything about it. But in reality, it was a handful of weeks before we were booked in for an appointment with the paediatrician. The speech therapist also paid us a visit at home, which made life much easier. The speech therapist said that, based upon the hour she spent with our daughter, she was pretty certain that she was autistic.
Then, when we visited the paediatrician, they asked us a bunch of questions about our daughter’s behaviour, interactions with us, interactions with others, and a load of other things. We answered everything honestly and in as much detail as we could. We spoke about her sleeping patterns, the way she behaves outside, how she is with new people… We spoke about everything. The paediatrician also spent time observing how our daughter interacted with the various toys.
The Waiting Game
The next step was to wait 6 months, whilst the paediatrician, speech therapist and a couple of other people came to visit us, spoke with the nursery and gathered information. It seemed like those 6 months took forever to go by. During that time, we didn’t really know what was going on, to be honest.
However, as the days went by, we became more and more certain that our little princess was autistic. And I’ll be honest, it took a little while to come to terms with that. I’m sorry to say that, but I want to be completely honest in the post. After all, there are some parents out there who simply refuse to accept or admit that their child may be autistic. That’s really bad for the child, as you are basically refusing to give them what they need, for lack of a better phrase.
Anyway, that 6 month period ended today.
And so we come to the end of this little journey, and the beginning of the next. Today we took a trip up to the paediatrician for our 6 month appointment. We weren’t sure whether it was just going to be another round of questions, or whether we would actually get the diagnosis. Obviously, we got the final diagnosis. The appointment was really relaxed, despite the fact that my daughter was screaming because she didn’t want to be there. The paediatrician spoke to us this time, rather than the other way around.
She explained the various different groups, charities and organisations that are available for support and advice. She told us about the autistic spectrum itself, in a limited manner, and pointed us in the direction of accurate information about it. She also told us not to just read all of the parenting forum posts about autism, as they tend to promote misinformation.
The appointment was quick, and the paediatrician was incredibly helpful. And just before writing this, I filled out the Children’s Disability Registration Form we were given. Today was the day our lives changed, but you know what? I think they have changed for the better. At least we now know for certain that our princess is autistic, and we can make sure we are always doing the right thing for her.
What I’ve Learned Through All Of This
I want to finish this post off by listing out the things that I have learned as we progressed through the stages I have just described. The reason for this is, hopefully, it will help others out there to know what to expect and also to know how to deal with their own thoughts and feelings. So, here goes;
- We felt we were doing something wrong and that it was our fault that she wasn’t talking. But that’s not true. You’ll likely feel the same way, but know that it isn’t your fault and you’re not doing anything wrong.
- It’s scary to sit there and think about your child being autistic. You may even deny it in your head at first, finding other potential reasons and excuses. But it is far better to just go and find out.
- I was worried that people around us would look at us or her negatively when we told them. But you know what? Most people didn’t. And if someone treats your child differently because of it, then they’re probably not worth knowing anyway.
And That’s All Folks
Since we’ve only just got the diagnosis, I haven’t had access to the materials and information that I now have. However, going forward, I will say that I’ll probably be posting more about autism and looking after an autistic child. I know this was a bit of a change from my normal posts, but I really hope it will at least help or reassure others out there.
Thank you for reading, and let’s all look forward to a bright future, shall we?
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- 12th December 2018