Officially Autistic

Today was the final step in Max’s diagnosis, which has been ongoing since the summer.

He had his ADOS session (Autism Diagnosis Observation Schedule) this morning, which basically consisted of five observers including the head pediatrician, speech therapist (and a student who was shadowing her), someone else who was there for something (no idea, he looked important!), and the therapist who was to interact with Max (who had been at ours for the home visit in Jan).

I was to sit in the sidelines with my dad and try to be invisible so Max didn’t come over to us.

They recorded the session. It was about 30 minutes.

I found it very hard to watch him display all his usual behaviours (warts and all) and not be able to interact with him, to show them the way to be with him.To show them what he can be like when he’s with me. To show him off I suppose.

That’s not what it was about though.

At the end of that they asked if we had anywhere to be, or if they could take 30 minutes or so to discuss everything and then give me the feedback and final diagnosis.

Max was happy to get to play with the toys in the waiting room, and I went between checking twitter, pacing the room, chatting to Dad and smiling and playing with Max when he wanted me to.

The diagnosis that I’ve known in my gut to be true since he was 18 months old has been confirmed officially today.

So has a WONDERFUL sleep-inducing hormone called melatonin. Which, as I type this, has worked! Max has been fast asleep since about 6.30pm, and didn’t even stir when I tucked Zack into bed.

All in all today has gone really well.

It’s been a hard and long day, and I’m glad to have a bit of peace and quiet this evening (can I get a HALLELUJAH!), to gather my thoughts.

Here’s hoping that tonight hasn’t just been a fluke and that the melatonin is in fact doing it’s job and will continue to do so.

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35 Comments

  1. February 15, 2011 / 12:12 am

    So glad you had a full night sleep, here’s hoping it continues xx

  2. February 15, 2011 / 12:29 am

    you can tackle anything after a good nights sleep. Bittersweet about the diagnosis. My sister FINALLY was given a diagnosis of Aspergers for my 15 yr old nephew- would have been much more helpful earlier in his life but at least now she knows!

  3. Jamie
    February 15, 2011 / 2:12 am

    I so wish you were in Brisbane, I would recommend Minds and Hearts (Tony Attwood’s clinic) a million times over, they have been so amazing for us that I can’t even begin to say. I wish everywhere had a clinic like this!

    I remember that first observation so much, it was so scary. And it is so hard to stand back and ease off all the things we do to make things Better, because they might get in the way of the all-important Diagnosis. We even went off-diet for a few days beforehand to make sure he was really ‘at his best’ for the observer. All for naught, mind you. He was a perfect angel that day, and she diagnosed him in about 30 seconds flat so it was never even a concern, but /we/ were terrified!

  4. February 15, 2011 / 4:39 am

    (((hugs))) A solid diagnosis is bittersweet.

    Melatonin! Let me know how it goes?

  5. February 15, 2011 / 6:28 am

    ((hugs)) the final diagnosis is always mixed feelings isn’t it ?

  6. February 15, 2011 / 8:59 am

    This is a really good post. A matter of fact recording of such a huge moment – well done. Hugs for the sore bit of it and cheers for the onwards-and-upwards. Oh, and, sleep tight Max.

  7. February 15, 2011 / 3:18 pm

    Ah, you are now a member of the club. That sucks, but you know, there are some wonderful people in this club that will help you through it, lift you up, and stick with you no matter what. I have a Max with Autism too. Getting the diagnosis was hard!! but now that you have it, you can start the work that will ultimately help him live a happy and fulfilled life. [hugs]

  8. February 15, 2011 / 3:39 pm

    Great news on the melatonin, delighted for you and hope it continues πŸ™‚

    As for the observation, I always find it hard not to intervene and show people how great HRH is and how to get the best out of him, but you are right, it isn’t about that, it is about getting the correct diagnosis and therefore help for our lovely little boys.

    Big hugs.

    Jen

  9. February 15, 2011 / 3:50 pm

    A year past our official diagnosis, I can tell you the label doesn’t change anything. He’ll still be your amazing, wonderful boy that he was before yesterday. It did help us to understand our little one a bit more but it doesn’t change who he is. It just gives him an extra layer to him. Just like my guy has blonde hair, he also has autism.

  10. February 15, 2011 / 4:20 pm

    Yeah I was sure he’d be diagnosed with autism anyway, but to have it now down in black and white has made me breathe a sigh of relief that my gut feeling was right and I’ve done the right thing by him. We’ve got a lot of support here, our district is really good with help and advice with kids on the spectrum.

  11. February 15, 2011 / 4:21 pm

    He SLEPT! ALL NIGHT! Was asleep from about 6.30pm till almost 7am!! It was BLISSFUUUUL. πŸ˜€

  12. February 15, 2011 / 4:21 pm

    It is, mainly relief now really that my gut was right, know what I mean? Also… HE SLEPT from 6.30pm-7am!!! πŸ˜€

  13. February 15, 2011 / 4:23 pm

    Thanks Ellen. It was a long day, and I didn’t realise quite how draining the morning had been till the boys were both asleep (yes, BOTH asleep, Max was asleep by 6.30pm and stayed that way!!) and I finally relaxed. Like you say though, onwards and upwards! πŸ™‚ x

  14. February 15, 2011 / 4:25 pm

    It’s been *amazing*, still got a bit of a twitchy-eyelid that I get from tiredness, but it’s much less today than it has been! Max has been, in general, pretty good. Still had some screamy points today, but so long as the melatonin works again tonight, it’s easy to handle! πŸ˜€

  15. February 15, 2011 / 4:26 pm

    That’s how I’ve felt today, like I can tackle anything! SO refreshed. πŸ™‚
    Awful that the diagnosis took so long for your nephew, hope he and his family get plenty of support now. x

  16. February 15, 2011 / 4:28 pm

    Thanks so much Kat. I’ve met such wonderful people online who are part of the same club, and every single one of them has helped lift me up during the dark days. Now things are much better. So long as the melatonin works (1 night is a fluke, 2 is success!) I think we’re on a good road – however long it may be! πŸ™‚ x

  17. February 15, 2011 / 4:29 pm

    I did have to point out after the session had finished that he was saying “please” in his own way to ask for the toy back that he wanted! And show them how he could be with me! LOL
    Fingers crossed last night wasn’t a fluke… eek!

  18. February 15, 2011 / 4:31 pm

    Indeed, you’re so right. He’s still my wonderful boy!We got the initial “possible autism” back in July, and I’ve dealt with my upset about the “label” back then, so now I’m just relieved that I haven’t been barking up the wrong tree all along! πŸ™‚ x

  19. February 15, 2011 / 4:41 pm

    I don’t want to exactly say “congratulations” but also the not knowing is so awful, that even though there are such mixed feelings there when you get that autism diagnosis? It is a huge relief to finally have a definitive answer.

    And also, I suppose, now more services can be put into place. Because that’s the main thing a diagnosis is good for anyway. It’s not about the label, it hadn’t changed who or what your child is one iota. What it does do is both give you a bit of a road map for what the most appropriate interventions might be, and help to get those funded. That’s all.

    Also it allows you to say to the next judgmental idiot who makes a rude or snide remark to you about your child’s behavior and therefore your (clearly inferior) parenting: β€œHE has autism. So what’s YOUR excuse for your rude behavior?”

  20. February 15, 2011 / 4:42 pm

    Well done on both counts lass, even though you know it to be the case – the final diagnosis comes as relief, but also comes quite hard. Even though you need it and you know it, when the officials confirm it – that’s when the grieving process can take its toll. We too, were relieved when both of ours were diagnosed – but at the same time, it hurts when your suspicions are put in stone. At least you have a sleeping lad now, which will make a huge difference to yours as well as both your sons lives. Whatever our kids are diagnosed with, the most important thing in their lives remains that they are loved for who they are, and understood as much as they can be.

  21. February 15, 2011 / 5:17 pm

    It’s funny how bad news can be good news too, isn’t it?! Even though we had no idea and weren’t expecting it, somehow it was a huge relief to know somebody else understood. The diagnosis definitely opens doors, deosn’t stop the rollercoaster of course but at least it gives you a breather (especially with the melatonin help I’m guessing!!). hugs x

  22. February 15, 2011 / 6:46 pm

    So, so thrilled for you hun! πŸ˜€ Long may it continue!

  23. February 15, 2011 / 7:20 pm

    Oh me too! SO relieved, and it seems to have worked tonight too, so it’s not been a fluke! πŸ˜€ x

  24. February 15, 2011 / 7:23 pm

    It’s good that now the diagnosis is *confirmed*, so like you said, I can say that he has autism. Though to be honest I have been for a few months anyway.
    The best thing is that now the “label” is official, it’ll open up more funds at the nursery to get everything needed for him in place! πŸ™‚ x

  25. February 15, 2011 / 7:25 pm

    Thanks sweety! Second night now, and it’s gone well again so far. Too scared to go up and check if he is really asleep though. It’s been about 40 minutes since I heard any movements or noises from his room, so I’m pretty sure it’s worked. *happydance*

  26. February 15, 2011 / 7:26 pm

    I know exactly what you mean. The “probable” diagnosis from the summer has been autism, now it’s been confirmed, which is a relief. It means the nursery will get more funding to be able to use to help get things to cater for him, which is awesome!
    Also, night 2 of the melatonin is a success, so last night wasn’t a fluke! πŸ˜€

  27. February 15, 2011 / 7:30 pm

    I think I did most of my grieving in the summer, when the paed said that is is very likely that we were looking at autism. At the end of the day, I’m just glad that the day went so smoothly, and that we got melatonin! Night 2 is going well… he’s been quiet for about 40 minutes now, so last night wasn’t a fluke! πŸ˜€

  28. Marita
    February 16, 2011 / 3:27 am

    Heh. I blogged about the ADOS test today.

    Am glad you have an official answer and very glad the melatonin is working so well for you.

  29. February 16, 2011 / 9:07 am

    I’m on my way over to have a read. It worked again last night, but Zack ended up being the one to wake up throughout the night – poor wee guy is full of a fever and not well. >_<

  30. February 17, 2011 / 4:04 pm

    I’m glad that you have a diagnosis, but I’m sorry it has to be like that. Hugs.

  31. February 17, 2011 / 5:38 pm

    Thanks sweety. To be honest I’m just glad it’s over and done with! Now we can get on with things. πŸ™‚ x

  32. February 20, 2011 / 10:52 am

    […] Soft Thistle writes about having her instincts about her son’s condition confirmed by doctors. […]

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