Thursday 27 March 2014

Heading towards an ASD diagnosis

 

This is my son, his name is Damian and he is 10 years old.

Since he was 3 years old, I had a nagging feeling that he could be an ASD child.

He thrived on routine
He would become distressed if we didn't follow this routine
He would obsessively line up his toys
He found social activites hard work

But due to his age and not wanting to put a label on my son, I didn't push for an assessment referral. I voiced my concerns to his teachers but as it wasn't affecting him day to day, I left it in their hands as to whether they wanted to push for a referral through the SENCO.

But as he got older, it was becoming a problem!!

He has sensory issues with food textures, noise and touch. He will discount food on how it feels in his mouth and not how it tastes, if he doesn't like the texture, he will gag. So he tends to eat the same food over and over again. With regards to noise, if it is a repetitive, non-background noise, it will distract and irritate him (think along the lines of someone clearing their throat or a dog barking). He has little awareness of personal space and without knowing will stand right in front of you while talking, but if he isn't expecting it or is unwilling to accept it, he doesn't like to be touched, sometimes even rebuffing cuddles from loved ones. Though if he wants to give a cuddle he will.

He prefers his own company to that of children his own age and will often isolate himself from others, if he wishes to be sociable, it's on his terms and he will initiate it and terminate it when he feels it's finished regardless of if the other person wants to ask more questions or play another game. He becomes very agitated if another person encroaches on his alone time or refuses to play his games his way.

He doesn't understand social cues: how to join in with a group of people and how to have a reciprocal conversation and this impedes greatly on his ability to make and sustain friendships.

He also has great difficulty on guessing how people will react or what they are thinking or what the outcome of a given situation will be, he doesn't have that flexibility of thinking. He finds it hard to understand why people might be sad or hurt by something he has done or something he has said, but when I talk to him about it and explain it to him, he can become quite upset at the thought that he has upset another person.

He talks in a somewhat adult manner, but his voice doesn't lilt even when talking about something that he loves, his facial expressions rarely change either. He prefers to talk to adults than children, he can become quite irritated when talking to younger children and having to explain things. When talking to adults, he doesn't grasp the concept that they might not understand or have knowledge of the subject and will carry on the conversation whether they are listening or not.

He also needs extra help with his personal care along with cooking food, this is one of my main concerns as he gets older and approaches adulthood.

Approximately a year ago, I went to my GP with 2 sides of an A4 piece of paper full of my concerns about Damian and we talked about it, along with my worries and the GP referred him immediately, in this time we have met with the Lead Paediatrician in his case and he has had a visit from the Educational Psychologist. The report from this assessment was a huge eye opener, reading the same thoughts and worries I had myself in writing that his teacher and the Psychologist also had. For all these years, I've doubted myself and many times I've talked myself into believing I've been exaggerating matters.

After talking to his teacher at Parents Evening this week, her thoughts are on an ASD diagnosis, from all my research and experience with Damian, I think he will have a diagnosis. but until it comes from a professional, we can only do what we can to make Damian more comfortable in his abilities and implement structure and routine.

I felt the time was right to finally talk about this as before, I just couldn't find the correct words to explain what was going on. Regardless of whether we get a diagnosis or not, I would never change my son for the world, he is and always will be my baby boy, my first-born, my little buddy and my pride and joy and I love him with all my heart.

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18 comments:

  1. This is a really powerful post, you clearly love and know your son very well, and it just shows that as parents we really do know our children best. I hope you get the formal results (positive or negative) that you need to move forward x #BlogClub

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    1. Thank you, until we get a diagnosis or told otherwise, I will always have doubts, but now his extra needs are being highlighted, we can implement extra structure and routine x

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  2. so happy that you have finally found the right time to put down your thoughts. like you said this won't change a thing but will change everything at the same time x

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  3. What an amazing post, so beautifully written. Thank you so much for sharing and linking this up to #madmidweekbloghop

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  4. Hope you get some answers soon, he sounds like a lovely little boy and you sound like a great mum.

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  5. It is so positive that your GP is now listening. I can't imagine how you'd decide what is 'right' when they're younger as all children are so different and not having had a child with ASD before how could you know? I hope both you and Damian get the support you need :)

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    1. This is why I didn't push for anything when he was younger as I didn't have anything to compare it to, but as he has gotten older I felt it was the right time to step in.

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    2. Definitely - it sounds like things are moving forward for both of you which is brilliant.

      Sorry about my previous post - for some reason it logged into my old Google account but is really me :D!

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  6. You are and will always be the best advocate for your son. I am sure he is wonderful

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  7. A truly personal post and so pleased that you found the time to share it. I hope that you get all the support that you and your son need

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  8. Its good that you shared this post and made more people aware of ASD. I think if people are more aware of such things it helps them to understand it better.

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  9. Wow! Such a beautiful post, and you're obviously an incredible mum. By the sounds of it you've got some great professional support too, which will hopefully help whatever a final diagnosis is.
    #BlogClub

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  10. That's so great that you're ready to talk about it now and he sounds like a gorgeous little boy. Good luck moving forward - although it sounds like you are going to be such a great support and advocate for him that he won't need it!

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  11. Mummy always knows best and this goes to prove no one knows your son as much as his mum ever will.

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  12. Good luck with everything! It must be difficult going through the referral process so late but then it's also reassuring that he has managed to cope with things up til now without the support! I hope it all goes very smoothly for you and he gets any extra support he needs :)

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  13. You know writing it down might not 'change' anything, but it might help other parents in a similar situation. I hope you manage to get some answers x

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  14. A vital post that will help so many other parents seeking similar answers, I hope you get the diagnosis soon. Thanks so much for sharing this with #brillblogposts

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