Paid Members Hannibal Scorch Posted May 18, 2021 Paid Members Share Posted May 18, 2021 22 minutes ago, John Matrix said: I don’t have much to say right now, so not really sure why I’m posting, but this afternoon my youngest son (3 in July) was formally diagnosed as Autistic. Its not a shock as such, suspected as much for about a year now - some things became quite apparent in the early months of the first lockdown, feel more numb than anything.  It feels like huge news and no news all at once because there’s no clear pathway from here, all very reactive, based on development etc which whilst obviously the right approach, doesn’t help us feel like we’re able to do anything in the meantime. Speech and Language therapy awaits, but one of our biggest challenges is getting him to engage with us for long enough to cut through, so I’m less than optimistic. Head is all over the place. It’s not worry, or panic or sadness necessarily, I just don’t know where to start in terms of being any use to him. The fact you’ve got a diagnosis is a huge win. We’ve had to get a private diagnosis for our daughter because the school “didn’t see what we see” so could get no support from them in getting an appointment to see someone (had no issue with our son). The fact you’ve gotten that means you should get access to support and help and that will be a big help to you all. Quote Link to comment Share on other sites More sharing options...
Paid Members Devon Malcolm Posted May 18, 2021 Paid Members Share Posted May 18, 2021 1 hour ago, John Matrix said: I don’t have much to say right now, so not really sure why I’m posting, but this afternoon my youngest son (3 in July) was formally diagnosed as Autistic. First and foremost, it's *great* for you and your son that he has been diagnosed so young. That's a great catch for such an age. It means that you can all start building up the best and most accessible life for him now, and ensure that he has the most comfortable childhood possible. 1 hour ago, John Matrix said: Its not a shock as such, suspected as much for about a year now - some things became quite apparent in the early months of the first lockdown, feel more numb than anything.  It feels like huge news and no news all at once because there’s no clear pathway from here, all very reactive, based on development etc which whilst obviously the right approach, doesn’t help us feel like we’re able to do anything in the meantime. The best thing you can do right now is keep things exactly the same. As you'll learn (or know), big change is hard for many autistic people. And it really is a case of reactive. It's very, very hard to be proactive and, actually, it can cause more harm than good if you start making such guesses. There's going to be some foot stomping ahead but your son will have his own way of telling you what needs to change and what's not right with him. 1 hour ago, John Matrix said: Speech and Language therapy awaits, but one of our biggest challenges is getting him to engage with us for long enough to cut through, so I’m less than optimistic. There's no reason not to be optimistic. I'd reckon by now you already have your own personal, family-specific way of communicating with him. You'll find that develops as he gets older, with some input from therapy and school. There will be very little that you don't understand each other on, even with a modicum of words spoken. 1 hour ago, John Matrix said: Head is all over the place. It’s not worry, or panic or sadness necessarily, I just don’t know where to start in terms of being any use to him. Like I said earlier, don't change anything. Just continue doing what you're doing. The fact that you spotted this so early says a hell of a lot about you as a parent and just how attentive you are around your son. By doing that, you have helped him take a huge step in his life. You have already been far, far more use to him than you realise. Quote Link to comment Share on other sites More sharing options...
Paid Members John Matrix Posted May 18, 2021 Paid Members Share Posted May 18, 2021 I realise how ridiculous this sounds, but it speaks volumes to my current state, that whilst I know full well how fortunate we are to have a diagnosis at such a young age, I can’t shake the feeling, especially in light of what @Hannibal Scorch says, that it must be because it’s some sort of off the charts, glaringly obvious case which, even if it was, counts for sod all in the grand scheme of things, I just can’t help right now but connect that to feelings of how severe that makes it etc etc. But therein lies the inner confliction, because as the assessment team pointed out to us, there is so much he DOESNT do that they might expect to see, there’s no rigidity whatsoever, he’s not arsed about routines, or foods, new people or places (far from anxious, he wants to explore) he finds loud noises positively hilarious, he’s arguably physically more capable than either of his older brothers were at the same stage, has shown a slight increase recently in responsiveness and eye contact - yes, he wants to do what he wants, when he wants, but what 2yr old doesn’t?  But I wouldn’t ever describe him as having had a meltdown or any of those other rather horrible terms. He doesn’t, however, have any language or vocabulary, he has had a few words, but they seem to have gone. He rarely responds to his name and when he does, it’s usually with little more than a cursory glance and Whilst a little better, we get very little eye contact. He’ll react to things like no, stop, sit-down, but inevitably do it again about four seconds later, but if it weren’t for his lack of speech, he’s actually quite a vocal boy, but it’s just sounds, I’d have no concerns whatsoever, his behaviour as at worst, inconvenient, wanting to change the DVD 30 times a day or constantly be taken to the fridge for something, he’s by no definition naughty (even unintentionally) and so it’s just a real struggle to understand. You’re spot on that despite a lack of words he’s able to communicate effectively, he’ll lead us to the thing he wants, bring us an empty cup to fill, point to the DVD he wants to watch etc, and whilst I say struggling to be optimistic, by the same token the thing I’m most fascinated to see is how the professionals gain and keep his attention so that we can start to apply those techniques, fair to say communication is very much on his terms as it stands. 38 minutes ago, Devon Malcolm said: Like I said earlier, don't change anything. Just continue doing what you're doing. The fact that you spotted this so early says a hell of a lot about you as a parent and just how attentive you are around your son. By doing that, you have helped him take a huge step in his life. You have already been far, far more use to him than you realise.  Honestly mate, this...this means the world to me today of all days.  Thank you. Quote Link to comment Share on other sites More sharing options...
Paid Members Devon Malcolm Posted May 18, 2021 Paid Members Share Posted May 18, 2021 (edited) 13 minutes ago, John Matrix said: But therein lies the inner confliction, because as the assessment team pointed out to us, there is so much he DOESNT do that they might expect to see, there’s no rigidity whatsoever, he’s not arsed about routines, or foods, new people or places (far from anxious, he wants to explore) he finds loud noises positively hilarious, he’s arguably physically more capable than either of his older brothers were at the same stage, has shown a slight increase recently in responsiveness and eye contact - yes, he wants to do what he wants, when he wants, but what 2yr old doesn’t?  But I wouldn’t ever describe him as having had a meltdown or any of those other rather horrible terms. There's a good chance that this will change as he gets older but right now his flexibility of mind means that, speech and the occasional bit of repetitive behaviour aside, you don't have to concern yourself right now with making sure everything is just so. Quote He doesn’t, however, have any language or vocabulary, he has had a few words, but they seem to have gone. He rarely responds to his name and when he does, it’s usually with little more than a cursory glance and Whilst a little better, we get very little eye contact. He’ll react to things like no, stop, sit-down, but inevitably do it again about four seconds later, but if it weren’t for his lack of speech, he’s actually quite a vocal boy, but it’s just sounds, I’d have no concerns whatsoever, his behaviour as at worst, inconvenient, wanting to change the DVD 30 times a day or constantly be taken to the fridge for something, he’s by no definition naughty (even unintentionally) and so it’s just a real struggle to understand. You’re spot on that despite a lack of words he’s able to communicate effectively, he’ll lead us to the thing he wants, bring us an empty cup to fill, point to the DVD he wants to watch etc, and whilst I say struggling to be optimistic, by the same token the thing I’m most fascinated to see is how the professionals gain and keep his attention so that we can start to apply those techniques, fair to say communication is very much on his terms as it stands. It's important that, actually, you don't try and understand. Especially at this early age, it's not actually important. He's not going to be able to tell you why he continually changes a DVD or keeps going to the fridge. But sooner rather than later, you'll spot a reason why he keeps doing this and every bit of information you glean, no matter how insignificant it might seem, is an important building block in building your mutual relationship. Just keep watching and look for patterns, but trust me when I say that the 'why' isn't important, or certainly not now. And it's great that you already have that basic line of communication. Myself and my 12yo daughter get by on a mixture of words, sounds, gestures, Makaton, looks - our own language that we've naturally developed over years. As long as you get each other, that's all that matters. Speech is always preferable, obviously, and you want to encourage it but it's not the be-all and end-all. Quote Honestly mate, this...this means the world to me today of all days.  Thank you. Absolutely welcome. You know where I am on here and Twitter if you want a natter, and I'm sure you'll get great advice from @Hannibal Scorch and others that post in here too. Your head's swimming now but in a week, maybe less, everything will be more or less the same as they were yesterday. Edited May 18, 2021 by Devon Malcolm Quote Link to comment Share on other sites More sharing options...
Paid Members quote the raven Posted May 19, 2021 Paid Members Share Posted May 19, 2021 I don’t have a lot to add that dev has not put very well already.  My son was diagnosed just before he was 3.  He’s still non verbal now but he uses an iPad to communicate. They will find a way.  The main thing I remember other than the perfectly normal “what the fuck am I going to do, I don’t understand” was the sea of help that opened up once he was diagnosed from courses for me to early years support.  There is a really decent bunch of people in this thread that are always ready to help.   Quote Link to comment Share on other sites More sharing options...
DavidB6937 Posted May 19, 2021 Share Posted May 19, 2021 One of my closest friends had to fight for years to get a diagnosis for her daughter. She knew. She just kept going round the houses with no real support and it was such a tough time for her. I know that's not indicative of everyone's experience thankfully but it felt like she was getting brushed off at every step. The diagnosis didn't change everything for them. The way she puts it is that it just opened doors that she was unable to before in terms of help etc. It didn't change her daughter. It didn't change their family. What it did do is allow the rest of the world to catch up with what they're dealing with and actually take them seriously. Unfortunately you generally need that confirmation before you can finally get everything you need. I'm always in awe of how they've managed over the years though. Their patience. Their determination. And hell, that clearly extends to a lot of families - including people on here that I've read stories from. You genuinely have my admiration and respect and as tough as your journeys are, never underestimate how important your relationships with the kids are. Be proud of what you've done and what you're doing. You'll question yourself along the way but that's perfectly natural. Just remember how far you've come so far. More than anything - know that there's no 'right' or 'wrong' when it comes to autism. I know three people of various ages and they couldn't be any more different. The support they've needed and the way they've acted etc. It's often trial and error along the way. Topics like this will help though. I'm so glad people have got outlets and ways of discussing with others. The Internet is a bloody wonderful thing sometimes. Quote Link to comment Share on other sites More sharing options...
Paid Members Hannibal Scorch Posted May 19, 2021 Paid Members Share Posted May 19, 2021 I love this thread. @John Matrix My son was just over 2 and a half when diagnosed. It could be as you say it was off the charts, it could just be you have access to good people who know what they are doing. My daughter didn't really say anything until she was coming up to 4. Now she doesn't stop as testiment to having a podcast and youtube channel about books. However, she has a lot of traits which she suggests she is autistic in how she interprets and feels about things, to getting stressed out to the point of wanting to harm herself. She is about to turn 8. Because in school she is leading the class in reading and is doing well in other subjects, they don't see an issue, so won't ask her to be seen by someone, but she does most of this stuff at home, or when her teacher isn't with her (Break times can be an issue with her socially). So getting someone to recognise this is great news. Not a comfort obviously, but still great. My son has been at a SEN school since he was 4 after the school my daughter goes to let him down because in all honesty, they don't like having disabled kids going there because of how it ranks in the county. They can't not take kids in, but they almost false your arm by being so awful with the care plans. He is much better, still doesn't speak and says the odd word. But with me it is a challenge because he will choose when he wants to interact with me, but has no problem with my wife or daughter. The key thing is everyone is different. I wish like with @Devon Malcolmwe were able to use Makaton but we've tried and failed, however we have learned other ways of communicating which works. We didn't have success with the ipad like @quote the raven, but again every child is different and you will get to that place. Quote Link to comment Share on other sites More sharing options...
Paid Members Jazzy G Posted June 8, 2021 Paid Members Share Posted June 8, 2021 While I was out at Heaton Park with my mum I got a call halfway through photographing a goat in the animal park. I didn't answer as I didn't recognise the number and I wasn't expecting a call. Anyway, they left a message and said they're from the OWL centre, and that they've been passed my details by the Autism Service for an assessment. They also texted and asked for my email address, as well as the email address of somebody who's known me "preferably my whole life." so I gave them my mum's, and Mrs Jazzy's. I/we just have to wait for them to email now, I guess. It all feels a bit more real again now. I had a huge rush of anxiety, which wasn't nice as I've got to make my way home on my own now. I'm glad I wasn't at work when they got in touch though, as that would have really thrown my day out of wack. Quote Link to comment Share on other sites More sharing options...
sivy Posted June 8, 2021 Share Posted June 8, 2021 I don't post much at all on here, just browse mainly. But seeing this thread as made me post. My partner son, who I've brought up since 3 months old got diagnosed at 18 months, that was pure luck, by an health visitor coming to see my other son just noticed one or two things and put the referral in. Only took a few weeks for him to get diagnosed. 12 months later George who is a year younger showing the same signs but because of covid hasn't had the diagnosis yet. Paul won't speak wakes up at 2am, but gives eye contact when singing songs. Is a proper wizz the tablet. George just has to have balls lined up in a certain way otherwise he won't settle otherwise. The whole thing takes so much time but when you see them do new things it means even more. Quote Link to comment Share on other sites More sharing options...
Paid Members Jazzy G Posted June 9, 2021 Paid Members Share Posted June 9, 2021 Got an email from them this morning, and it was just to let me know they'll be in touch as soon as possible. Hopefully sooner rather than later. Quote Link to comment Share on other sites More sharing options...
Paid Members Jazzy G Posted June 15, 2021 Paid Members Share Posted June 15, 2021 Me again. More emails from the Owl Centre. One to confirm my email address, then a questionnaire, but not like one of those AQ tests with the multiple choices. All the questions conceivably had yes/no answers, but text boxes as well so they ended up getting essay type answers. Presumably somebody will have a look and then contact me, my mum and/or Mrs Jazzy for further questioning. Properly threw my mind off, then the cat was misbehaving so I had a tiny little bit of a meltdown. Got on the bus to work, listened to some more of my audio book and felt alright until I dropped a mug and broke it in the work kitchen. I think I'm going to go and tell my manager I'm not having the best of days. Quote Link to comment Share on other sites More sharing options...
Keith Houchen Posted June 15, 2021 Share Posted June 15, 2021 3 hours ago, jazzygeofferz said: listened to some more of my audio book and felt alright until I dropped a mug and broke it in the work kitchen. I hope it didn’t get brok… oh.  hope the day gets better for you, mate. Positive news on the Owl Centre front so hopefully you are one step closer than you were yesterday! Quote Link to comment Share on other sites More sharing options...
Paid Members Jazzy G Posted June 15, 2021 Paid Members Share Posted June 15, 2021 Cheers, Keith. It was only the handle that snapped off. I've just been plodding on picking orders at work. HR asked for an update, presumably because my manager let them know. When (if?) I end up getting my diagnosis I have to let them know so we can do a legally mandated disability risk assessment. Quote Link to comment Share on other sites More sharing options...
Paid Members Jazzy G Posted July 23, 2021 Paid Members Share Posted July 23, 2021 Had my assessment meeting in teams this morning. It went about an hour and a half and there were some really difficult questions asked. It was really draining and left me all scrambled. They're going to arrange an appointment to give me a call in the next two weeks to discuss their findings after they've studied the video of the call with psychologists and other experts. I'm glad I don't have to go to work now. Hopefully I can get the next call arranged around work as well. Quote Link to comment Share on other sites More sharing options...
Paid Members Jazzy G Posted July 30, 2021 Paid Members Share Posted July 30, 2021 Me again. Got an email today inviting me to a zoom/teams meeting with one of the therapists on Sunday at 1 to give me feedback. It's like judgement day. Quote Link to comment Share on other sites More sharing options...
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