The Diagnosis

My son was diagnosed with ADHD by a computer.

That’s how they do it, apparently. We, his parents, filled out a form each, as did his teacher. The forms are fed through a computer (I don’t know) and the results are spat out. Anything over 70% is considered a clinical diagnosis. I think there were 5 categories and he scored into the 90’s in some of them, and over 70 in all bar one. If it all sounds a bit vague, my brain is whirring around so much information, I just can’t process it all. I wish you could record these meetings, how is it possible to store all this valuable information you’re being given?

The doctor took me by surprise when he told me, I hadn’t expected to be given a diagnosis that day. He told me they would diagnose the boy with ADHD based on the results, handed me some printouts with some recommended reading, mentioned parenting classes, family therapy and medication and sent me on my merry way with my handouts. I don’t think I could have spent more than ten minutes with him.

Whilst it was a shock to hear a professional tell you your son has ADHD, it hardly came a surprise to me. This is why we had gone to the Lucena Clinic in the first place, at the suggestion of his teacher, along with our own concerns. And yet, I just didn’t feel that was the end of the story. I know my son, and I felt there was something more. Something else was going on to explain the low moods, the extreme emotional over-reactions and sensitivity. If I were to describe it, I would say he has tantrums that I would expect of my two year old; he is six. He will push and push at an argument until everyone is shouting and in tears; this will seem to lead to some kind of catharsis for him, and then, whilst I will be emotionally drained, a maelstrom of guilt and exhaustion, he will be perfectly happy and can continue on as if nothing ever happened. As if we weren’t a family on the brink.

And so I asked the lead Social Worker on the boy’s case if she would do an ADOS test. Of course, I had trawled the internet in my desperation, and had identified certain behaviours sometimes present in people with ASD which seemed to fit with the boy. These were, namely: Agression, causing self-injury, tantrums, unusual mood or reactions, unusual reaction to the way things sound, smell, taste, look or feel. An onlooker would just see him as a naughty boy, pushing boundaries.  Sensing my desperation, she said yes, she would, but that she would expect him to do quite well.

This week, we went back to get the feedback from the ADOS test. She gave us a narrative of what he had done well, what he had struggled with. It all sounded quite positive. Then she said, ‘ we are diagnosing him with Autism Spectrum Disorder’. The emotions suddenly swelled up inside me; fear, relief, uncertainty, sadness and, what I’m realising in retrospect, was shame. Shame at all the times I have shouted at him, got angry and frustrated with him and called him naughty.

It’s not his fault. It’s not my fault.

It’s who he is, how his brain works.

The label doesn’t matter, we all know that. But I suddenly feel I understand him better. Which sounds strange, I know. So much of my frustration came from just not being able to comprehend why he would do things that just seemed so obviously wrong, or why he would react so intensely to the slightest injury or offense. The discussion with the social worker about the workings of his brain, has shed light on that, and everything has clicked. The incomprehensible suddenly makes sense.

I know it’s up to me now to step up to the plate, to give him the support he needs and be his champion. He has so many skills we can nurture and develop to ensure he fulfils his potential, and this diagnosis will help us do that. It also means that he will get extra support in the class-room, which is vital in ensuring he doesn’t fall behind at this key stage.

It’s also important we recognise as a family that this is hard for everyone; me, my husband, our daughter and of course the boy himself. How exhausting his life must be for him.  We all need to learn the value of walking away, calming down, breathing space and respite.

I’m sure I will think of a hundred questions over the next few days as the news sinks in, in the meantime, I have some serious reading to do. You think you know about ADHD and Autism, but when I picture a typical ADHD kid, I don’t picture my son. Which just goes to show how little I know about it all. So, to the books and message forums I go.

I’d love to hear from you if you have any experience of parenting a child with ADHD/ASD or any recommendations of where to look for advice.

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46 comments

  1. BloggerMummyLauren · · Reply

    I’m sure it’s a big relief for you to finally know. It seems to be quite common for ASD and ADHD to crossover, and sometimes it’s difficult to diagnose one because they can often present in much the same way, particularly when it comes to the sensory side of things.
    My son was diagnosed with ASD two years ago and we are still learning as we go along. WE have found that there isn’t much help after diagnosis, and you really have to go searching for it, which is disappointing but I guess you just get on with things!

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    1. It is a relief, yes. It certainly seems like there wont be much support for us at home, beyond parenting classes but hopefully he will be able to get a little extra support in school, which is my main concern for him at the moment. How old is your son?

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      1. BloggerMummyLauren · ·

        My son is 7, he was diagnosed at 5. Having that diagnosis certainly does help with school, although it’s a slow process. We’re only just getting a SEN statement after two years of pushing! But his school have been great and Feb everything they could for him in the mean time, hopefully yours will too.

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      2. His current teacher has been amazing so hopefully it will all work out OK. I know resources for these kind of supports are always stretched. Thanks for reading.

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  2. I’m glad you have an answer and a diagnosis. I know there are unanswered questions and your still coming to grips with it but having that knowledge of diagnosis will be the start to help you as a parent and him as a child to move forward. #stayclassy

    Liked by 1 person

    1. The only way is up !

      Liked by 1 person

  3. reimerandruby · · Reply

    It must be difficult for you but in a way it’s good that you have the proper diagnosis. At least, he can now be given treatment / care appropriately. Hope you’ll get all the help you need for your little boy. #brillblogposts

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  4. What a fab and honest post. I hope now with the diagnosis, you can all get the support you need to move forward #brillblogposts

    Liked by 1 person

    1. Thank you – I am feeling optimistic ( for now!)

      Liked by 1 person

  5. Wow, I’m so impressed with your reaction! So many moms act like such a diagnoses is earth-shattering and world ending, but yours is relief that you finally understand. I applaud you on your emotional maturity. Best of luck of learning to care for and nurture your young one, but I would guess you’re going to be great.

    Liked by 1 person

    1. Thank you , so much , for that lovely comment. I hope I can rise to the occasion !

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  6. This was really beautifully written. Knowledge is power! I’m glad you have diagnoses to help you decide how to move forward. Much love to you all xx

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  7. This is a great post, I’m glad you got the diagnosis so now you know for sure and will have access to the help available. You are such a great Mum – well done Beth #stayclassy

    Liked by 1 person

  8. Thanks for sharing your story. I have seen quite a few kids with both of these issues as an adolescent therapist. I’m sorry I know all of the information can be so overwhelming. I agree with the getting good a therapist and doing family therapy as its not so fast paced as a doctor’s visit. Should be able to help you go through the information and help. Good luck. You’re doing great great. #KCACOLS

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    1. Thanks Sarah . Have just printed off a load of information to read , will take it slowly . We have time so no need to panic !

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  9. Thanks for sharing this, I hope you get the support you all need lovely. Must be a relief to have a diagnosis. Thanks too for putting my picture in your sidebar, it was a lovely surprise to see it xx

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    1. Thank you – love your blog and had some wise words from you so no problem !

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  10. mackenzieglanville · · Reply

    So much to take in, I can not imagine what this feels like. I follow a great blog you may already know it, but it’s called embracing the spectrum here is a link http://embracingthespectrum.com/castofcharacters/ I also had her do a guest post for me once I really think you should read it, here is the link http://www.reflectionsfromme.com/it-is-time-to-embrace-this-new-spectrum-of-light-and-colour/ I hope these links help lovely. #Kcacols

    Liked by 1 person

  11. Thanks for sharing this, it is such an important post. It is great that you now have a diagnosis, although it must also feel overwhelming at times too. I hope that you are now able to get support to help you all. Thanks for linking up with us at #KCACOLS and we hope that you will join us next week 🙂 x

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  12. That does sound like a strange test, but I suppose if it works, that’s what matters! Glad you got some answers and can now make plans to get the right support. I agree that it is important to trust your instincts if you think there is something more going on with your child. #KCACOLS

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  13. really pleased you have an answer. thanks for sharing your experience #KCACOLS

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  14. My son is just at the start of his assessments for ADHD, I don’t know much about it personally but I understand that feeling of not being to comprehend why your child would do something that they know is wrong or dangerous and i too have been left feel exhausted and drain after my son has just pushed and pushed and pushed at something that started out as nothing and it turn in to and all out argument that has left you in tears and wondering Why?
    I am glad you have got a diagnosis and that now you should get the help you need.

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  15. […] It was, co-incidentally, also our first weekend together as a family since the boy got his ASD/ADHD diagnosis a couple of weeks […]

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  16. I remember having to repeat to myself (coming out of the children’s centre after my son’s diagnosis of high functioning autism) that he was the same child I taken in. There wasn’t a disease in his little body, no cancer which was going to change him and essentially nothing that we didn’t already know. I always seat his diagnosis was a shock, but not a surprise. You seem to be already doing so much as a mum, just being so present for him and gaining knowledge. These are two of the most important things you can do – be there for him and help him to know himself by knowing first.!

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    1. Perfect description, a shock but not a surprise , thank you . So much to learn but so much already making sense

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  17. […] son has been presenting challenging behaviour for over two years and has just been diagnosed with ASD/ADHD. We are under pressure financially, over half of my salary goes on childcare, and over half of my […]

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  18. wow, what a roller-coaster! I can only imagine. It must be such a relief to have a diagnosis and to be able to move forward a little more prepared. Thank you for sharing your story x #kcacols

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  19. […] Previous readers will know he was diagnosed with ASD, just over a month ago. On the mild to moderate scale, she told us, what used to be referred to as Aspergers syndrome. (But now, is not. My reading to date hasn’t brought me to the reason for this.) […]

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  20. Ah Beth I can’t imagine the feelings that come alongside something like this, although you’ve described it really well. I guess forwarned is forarmed and you can now get in the support he (and you) need. I will be following 🙂 #KCACOLS

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    1. thanks really appreciate it; a little bit of knowledge goes a long way!

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  21. I can tell you have a lot of strength as a Mom, and I am sure it feels amazing to get some answers. The only way to go now is forward and I wish you and your family the very best. It’s not an end all be all, and you will find your family growing closer through the adversity. Keep up the good work Mom! Thanks for sharing! #KCACOLS

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    1. I think it will help us all in the end , thanks for reading

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  22. Hey lovely such a heartfelt and honest post, you sound amazing and I really feel for you and your family, my son has been on the tip of an ADHD/autism diagnosis since he was 2…he’s just on the cusp of things but I can imagine how in a way getting a diagnosis is a reassurance I hope you find a large well of support..KCACOLS

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    1. Thank you for the comment , and I hope you get whatever is right for your boy , diagnosis or not.

      Liked by 1 person

  23. Bah got wrapped up in thinking about the post I forgot the hashtag!! #KCACOLS xx

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  24. aliduke79hotmailcom · · Reply

    At least now you know what you are working with. You sound like you are an amazing mum doing all you can for him. And it is great he will get extra help at school.
    #KCACOLS

    Liked by 1 person

  25. Thank you for such an honest, heartfelt post. You sound like a lovely mum and a very strong family and I’m sure you will cope with whatever comes your way. #KCACOLS

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  26. beccaweatherall · · Reply

    Thank you for sharing such a personal and honest post. It must be such a difficult time but having a diagnosis really does help and sets you on the path to dealing with it. I worked at an SEN boarding school until 3 years ago when we relocated. I taught singing and music. It is amazing how the students responded to it. Music was a lifeline for some of them – they connected with it in a way they often couldn’t with anything else. All the best to you on your journey and I hope you get the support you all need. #KCACOLS

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  27. madelinelittlejohns · · Reply

    I don’t have any advice for you, but I’m really pleased for you that you’ve had a diagnosis. I’m sure sometimes just having a name for something makes it easier to cope with. You can move forward now, gathering the information you need and starting to understand a bit better where your son is coming from. x #KCACOLS

    Like

  28. Emilie · · Reply

    It must be such a relief to have a diagnosis. You can now find a new way to move forward as a family and hopefully get some support! #KCACOLS

    Like

  29. […] It was with her encouragement and support that I went back to my GP and asked for a referral to the Lucena Clinic, which is the local Childhood and Adolescent Mental Health service. At the end of this academic year, my son was diagnosed with ASD and ADHD. (I wrote about the process here) […]

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  30. Oh Beth I’m so sorry to hear that but I think I get what you mean about now being able to understand your son better. I guess a lot of things have more sense now. I’m sure there will be lots of questions that you might be asking to yourself at the moment but at least now you can work with it and you will be able to help him even more. I wish you all the best. Thanks so much for sharing such a personal post with us at #KCACOLS. I love having you here. I would love if you can also join us in our facebook group, 🙂 x

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    1. Thanks for the lovely comment – I’m a bit frightened of Facebook but I’ll give it a go !

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  31. […] , as well as ADHD, around 6 weeks ago. So far,  I have written about receiving his diagnosis (The Diagnosis), and how ASD presents itself in my sons case (What does ASD look like, to you?). I’ve written […]

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  32. Just reading your blog for the first time. It’s so refreshing to finally find a local blogger talking about ADHD. My son was diagnosed last November and suspected mild ASD, not concluded. I’ve yet to meet a parent dealing with it, my husband did the parenting course as I couldn’t. Anyway, I can relate to every word of your post x

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  33. Hello–I hear you struggles. I write a family therapy blog with a colleague of mine, a family therapist/child psychiatrist. We work with children’s behavioral issues from a family systems perspective. If you’re interested in that approach, please check us out. We try to be helpful to parents who are dealing with difficulties with children. Take care

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