ASD - Our journey so far

My son Neil is, a kind, funny, intelligent little boy, but he has some social and sensory issues, which is why he is being assessed for ASD.


 When I say asd, I'm talking about all forms of the autistic spectrum disorder. Because he has not yet been diagnosed, and we are unsure of what the final official diagnosis will be (autism, aspergers, high functioning autism), I like to just use the overall term of asd. He'sdefinitely at the higher functioning end of the spectrum but he still has plenty of difficulties.

It's hard to pin point exactly when we started having concerns, this is something all the health professionals ask when you meet them, what were your first concerns and I always struggle to find an answer. I know there were little things throughout his childhood that were different, I can remember little incidents, like one afternoon where he spun around on his hands and knees for what must have been an hour, and everyone was watching him, amazed at how long he was doing it, and he was in his own world for the whole time, just spinning. But I never thought at the time that these little things were related.

It was little things that Caitlin started doing before him that started to get us wondering. Despite being a year younger, she could write her name neatly and draw pictures that resembled things, where Neil was still scribbling. Some will say that's just boys and girls, but it did start to ringing little alarm bells for us. We started to notice resistance to change, such as getting very upset and anxious about getting a new sofa. Like most other concerned parents, I turned to Dr Google, and for the first time I started to think about ASD.

My hubby and I first discussed seeing our GP at the beginning of 2013, around the time Neil turned 4. This was a scary time, and it actually took me months of deliberation before I finally plucked up the courage to make the first appointment. A big worry of mine was that his 'issues' were nothing more than personality traits, and that people would think I was a monster for thinking there was something wrong with him. I convinced myself that any issues he had we could cope with, and that we didn't need to see anyone about it.

One Tuesday in the spring, I took the kids to a new toddler group for the first time. Neil found some toy cars he liked and sat on his own in the corner, quite happily just wheeling the cars around on the mat. Half way through the group the children were invited up to make mothers day cards and gifts at the crafting table, so I got a spot for Neil and Caitlin. Caitlin sat down and got stuck in straight away. I called Neil over a few times but he just continued to sit and wheel the cars around. I left Caitlin at the craft table and went to get Neil. He came up to the craft table but became very agitated and started trying to rip up the cards and crafting equipment, he was shaking and crying and pulling the things out of my hands. I let him go back to his cars, and he was instantly calm again.

Later in the toddler group the asked the children to start putting all the toys away, and they brought out a box of instruments for all of the children to take part in some music time. Again, Caitlin was straight in there, but Neil was reluctant to leave his car. Once the music started up, he had a total meltdown. He started pulling tambourines and drums from the other children and put them back in the box, and then he put his hands over his ears and rocked back and forth screaming that he needed to leave. It was the first time he had a major meltdown like this and it was quite scary. I swiftly grabbed their coats and left. Caitlin was distraught that she had to stop her music early, but what else could I do?

It was then I decided I was definitely going to seek advice from our doctor. I started to think about the impending first year at school. At the time he had 2 noticeable tics, pronounced eye blinking and sniffing. These tics became much more frequent during times of stress, and I worried that he would be picked on in school. I also started to worry that people would think I was a monster for not seeking help for my son. I was fighting a battle with myself, but I decided for Neil's sake I would get things checked out.

Because this is such a long post, and I have so much more to say, I have decided to break it up in to  seperate posts.

If you wish to follow our ASD journey, please check back for part 2 where I will discuss our continuing journey towards a diagnosis.


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12 comments:

  1. Just found your post through the #sofolo g+ group. I have a 4 yr old who is diagnosed with asd too, it's coming up to 2 years now since he diagnosis and I'm so glad I did push to get assessment and get support for him, you're definitely doing the right thing by having him seen. It's a lot easier when you get the diagnosis sorted out before they start school and hopefully he will then be given any help that he needs.
    Good luck with everything!

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    1. Thanks for taking the time to read and comment. Its such a long and difficult process, I actually wish I'd asked for assessment earlier, he's half way through first year at school now and we've been told to expect the assessment to take place in june, so almost the end of year 1. I wish he had been diagnosed before he started school, but at least we are getting somewhere now x

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  2. This must be so very hard for you lovely. Please don't feel alone though. There are plenty of bloggers who write about this subject and will support you - lovely people such as Steph from http://www.stephstwogirls.co.uk/ and Jeannette from http://www.autismmumma.com/ I will certainly read Part 2. Thank you for linking to PoCoLo x

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    1. It can be difficult sometimes, mostly worrying about the unknown and the stresses of appointments and wondering what's gonna happen. I'm so pleased to have found other blogs from people in similar situations. Thanks for the links hun x

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  3. Hi, just found you via @vicwelton, I spent too long wondering if our son was also autistic (he got diagnosed last year) after his sister was diagnosed at 4.5. Always at the end of a tweet. I was the same as you, very much in two minds about it but to receive a diagnosis was a relief as it meant that school would actually listen to us. I'm on twitter @autismmumma and http://autismmumma.com.

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    1. Thanks , its great to know other people have been through it and felt the same things. I'm just eager to get the diagnosis now so we can get on with things x

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  4. Hi Lauren, it is a very stressful time, waiting and not knowing for sure, but I think you've already made the brave first step of asking the questions. Our girl was diagnosed at 2 and a half after we referred her ourselves for speech therapy. A diagnosis will help you access help at school more readily, but you are most likely using lots of strategies at home yourself already. You are likely to carry on going through the rollercoaster of emotions, and I know it's easy to say, but try not to feel too much guilt yourself for suggesting it - of course all mums feel guilt anyhow, but we need to just ensure it doesn't take over. I do think blogging it is quite cathartic, so hope that helps you. We're here if you've got any more specific questions! x

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    1. Thanks Steph, like I said to Jeanette above, its so nice to find other people who have been through it all and know how you feel. I am also finding my blogging is a great help!
      I appreciate you taking the time to read and say hello, so thanks pet x

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  5. Thank you for sharing your thoughts on this. This is very personal and I am happy to be trusted to read your story #binkylinky

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    1. Thanks for taking the time to read x

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  6. I think you write about the beginning of the journey to getting a diagnosis so truthfully and it resonates for so many parents. Thank you for linking to Britmums. Hayley

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    1. Thanks, its a difficult time but hopefully by writing about it other parents can take comfort in knowing they are not alone

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