Wednesday, 2 November 2016

Relief and sadness - a diagnosis for my son #asd

I wrote recently that we had been offered an "initial appointment" which I thought would be just another step in what I expected would be a long journey towards a diagnosis (or not) for my youngest child.

To recap, Grumpy as he is known here is a chatty, loving 8-year-old but for a while we, and those close to him, have suspected his quirkiness is more than just, well quirkiness. I wrote last week that he can be obsessive, very distressed by things that my other children take in their stride and has demonstrated many other characteristics which year by year became less easily explained away by toddlerhood or personality.

Today, less than an hour into a scheduled hour and a half "initial assessment" the doctor informed us that my baby demonstrates clear characteristics of autism, which probably would have been described  in the past as Aspergers and that she was recording an official diagnosis of Autism Spectrum Disorder.

After support from blogger Steph Curtis from StephsTwoGirls we have found that strategies aimed at those with PDA, Pathological Demand Avoidance (which her daughter has) work best with our boy, but right now any diagnosis is a relief.


He is not a naughty boy. We are not bad parents.

I feel.......

I feel overwhelmingly sad for my son. Life is already difficult for him and even with this recognition of his condition it's not going to get easier. There will still be those who think he is spoiled, naughty or just plain odd.

I do feel relieved that at least we know. We can move forward with an official diagnosis. We can try and plan for his future and hopefully we won't be alone.

But is it OK to cry right now?

He is still my awesome, witty, lovely little boy and like a tiger with a cub I will always do everything in my power to protect him fiercely. But getting to this point has already exhausted me. Helping him get through every day takes imagination and so much energy.

Of course like so many of you out there I will carry on because that is what you do for your children whether they had a diagnosis or not. With the help of my wonderful husband and my awesome family and friends he will have every opportunity to ensure he gets the most out of life.

He calls himself "visibly weird." He is happy with his own description of himself.  I hope that he continues to be proud of his differences. We are certainly proud of him regardless of any label.


This is the beginning, not the end. Reports will be sent out, strategies put in place. I will update the blog any time I experience anything I think will be useful. There are people out there will much worse situations than ours and many blogs to read on the subject of #asd. This is just one thread in the story of our life so will be woven through the blog along with the rest of the varied content.

Thanks for reading.


12 comments:

  1. Totally OK to cry, I did exactly that when Tyrus got his diagnosis in June! As a mother you already know, but having it confirmed is still emotional, I am attending a 10 week course starting tomorrow, along with a member of school staff to try and work out how best we can help T, both at school and at home, might be worth checking if it is available local to you too as its a nationwide thing apparently xx

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    1. Thanks for this - have now found a course and think it will be worthwhile.

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  2. You are a brilliant mum, you've supported him so well so far and you just need to carry on doing what you have been doing. But remember to take time for yourself, recharge the batteries once in a while. Oh and buy some extra files ��

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    1. Thanks - learning as we go like everyone else in our situation.

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  4. Afra - I'm so sorry to hear this - only because nobody wants anything that might make our beautiful, unique, wonderful children's journey through life more of a challenge. But knowing your boy and your family, I don't worry too much for him! He's a charmer and lucky enough to have you for parents. I just thought I'd share with you about my dear friend Ken Siri, who lives his New York (you can see him via my Facebook page). He is an activist and leader in the autism awareness and research community in the States. He's written books (10001 Tips for the Parents of Autistic Boys and Cutting Edge Therapies for Autism - actually, I contributed a chapter to that one - both available on Amazon). I also helped get him started on his journey toward a documentary called Big Daddy Autism about his life with his son Alex (we're trying to raise the funds to get the last edits done): https://vimeo.com/102640838. His son is at a very different place on the spectrum, but Ken is incredibly knowledgable. I know there is a lot of support and great research being done in the U.K., but if you'd like any information about the latest from the States - or just to chat with someone whose been handling it for over a decade - an incredibly funny, warm, courageous and informed friend of mine, I'd be happy to put you in touch. Or check out his website: http://www.kensiri.com/ and blog https://www.psychologytoday.com/blog/dads-diary. In the meantime, lots of love.

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    1. That's both 101 and 1001 Tips for Parents of Autistic Boys... not 10001. ;-)

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    2. Thanks so much for this and the virtual hug. x

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  5. Hugs it is hard even after a long assessment. I am glad it happened so quickly and that you haven't had to fit it. Yes things are hard but try not to be sad. My lad is 20 now and you know that his friends are real and genuine and great. My boy is so happy now and I am so proud of him. He has overcome so much and your boy will do you proud too. If I can be of any help with anything do let me know. x

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    1. Thanks - its nice to hear from someone who has an older child doing well. x

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  6. Of course it's ok to cry *hugs* Let those emotions out.
    I really hope that you get all the support you need.

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    1. Thanks - I feel like we've finally had time for it to sink in and are getting used to it all.

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I'd love feedback- but keep it clean and kind.