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Will some ASD kids just be 'quirky' and not really have major issues?(15 Posts)
DS (9) was diagnosed last year. I knew he was dyspraxic but never though ASD quite fit but in the last couple of years he became more obvious. I assumed aspergers as he fits that perfectly - reading Tony Atwoods book was like reading his autobiography! Anyway his diagnosis was higher on the spectrum than I expected - I think it was 23 on the ADOS. Lots of stimming, not understanding emotions, one sided conversations etc.
Since then he hasn't had much extra help but his school have always given him a lot of help anyway (OT, SALT, reading group etc) but now he has social group too. He had barely any friends in the first few years of school but now has 2 or 3 faily good friends and seems to be socialising better. He is still slightly below average academically except for maths but I think this is due to him finding the style of learning boring and he sees it all as a waste of his time. He does try though but I think the teachers struggle to engage with him.
At home he is fine. Is obsessed with computers and is teaching himself coding at the moment. He doesn't really have meltdowns just gets a bit cross when I change things or am not clear enough. He doesn't get anxious about things. People do find him a bit odd but he seems to muddle along ok.
At this stage we are looking at an EHCP but since he isn't struggling enough he may not get one. I'm unsure if it is worth it. He would be cross with 1:1 help as he hates being seen as different (he refused all OT equipment like writing slopes and pencil grips as noone else had them). We haven't yet told him about his diagnosis as he is happy and muddling through and doesn't really care about school or what people think. He wants to be a computer game maker and that is what he is going for . I am pretty certain he will be angry and refuse to accept a diagnosis anyway. We have been bringing it up in conversation over the last 6 months (differences in people, and what asd is etc) and he seems to understand that. I know I have to tell him eventually but I don't feel now is the right time.
Anyway my point is how often do kids with ASD do ok without any big difficulties? Should I just leave things be or push for something I'm not sure is necessary?
I think yes, there are tons of kids who just middle on through. I wouldn't hide Dx from him though. As a computer enthusiast the bit of neutotribes about the guy who wrote PEARL wrote will please him.
I have a teenager who is being assessed for Autism. We have always been open and honest with her about it. She generally does very well, but does struggle with some things. Her school are aware of her difficulties and she has gone through with the SN Base teachers a list of what stresses her out, and created a profile which is available to her teachers. She had a meltdown this week at school but the student support centre helped her calm down and get back to classes. She doesn't have a EHCP as we don't feel she needs one. But her school are very supportive of her needs anyway.
I know many many individuals who are in all probability able to meet the criteria (with ease). The industry I have the most contact with is heavily skewed towards this subset of the human race
as is my family. My experience is that Dx and embracing it is not necessary for success (personal, emotional and financial), HOWEVER if he wasn't going to submerse himself in that world it might get be more of an issue. For that reason I would say Dx acceptance gives you more mobility and flexibility.
I know I do need to tell him but I'm struggling to find the right words. I want to be positive about it and not make it a big deal.
I could have written your post two years ago. We didn't tell our DS of his dx straight away as he bucked against his dx of adhd when we told him. Ds even told the paed that he didn't have it and that he was wrong . So we used the following months to drip feed about peoples differances. Ds attended many asd activities in the holidays and then said 'how comes the youth club isn't really busy?' , I said because its reserved that time for a special group of people with Autism (there I got the word out with him)!! Then the flow of questions which we answered whilst playing lego (so it wasn't intense), followed by the ultimate question 'so have I got Autism then?' (I gulped, and I am being honest here) and said in my most casual voice 'Yes, it's great, but you know when you find XYZ difficult we now know its beacause of asd'. He then said 'well that makes sense then'. I think the timing was right, the circumstances were right, I had come to terms with it and had educated myself on asd so that I could answer any questions. I wanted to put it in a very matter of fact way so he didn't feel frightened of it or overly worry about it. I left things open for discussion. watched the Rosie and Me video together - which is excellant. You'll know when the right time is, but at his age (which was the same as my ds) it will get harder to hide and things can take a turn which as previous poster said 'far better now then when he is in a crisis'. Two years ago my ds most definately did not fit the criteria of EHCP, the last year he most definately did and has just started this week at a special school.
Thanks Polter - I watched that video but don't feel like it fits him at all. Surely other people must feel this way. Autism is a spectrum after all. Or maybe I don't understand my own son properly. I don't know - it's all a bit confusing!
Thanks chownow. I think my biggest issue is he doesn't think he is different or that things are difficult for him. He is quite confident and a bit arrogant I suppose - he is right and everyone else is wrong type thing. He is perfectly happy and couldn't give a crap if people don't like him or avoid him. It's like he is oblivious. He seems to search out other friends who are very similar. His current best friend has lots of traits but isn't being assessed or anything so I can't even say "you are like your best mate * who also has asd". Sorry I sound like I am being deliberately obstructive here. It's just everyone keeps saying you must do this but it just feels wrong to me!
My DS1 is 9 and he has aspergers syndrome. I explained to him that aspergers syndrome was a word to describe people who find certain things difficult. He was fine with that although he prefers the term "social communication disorder" because he says it describes his difficulties better.
Could you do it backwards and speak disparagingly about how hard life must be for 'neurotypicals'
... "you know, those people who don't understand computers and seem to waste all day on pointless socialising & on worrying what people think of them"
It's just everyone keeps saying you must do this but it just feels wrong to me!
If you genuinely feel he won't cope then you need to think about changing how he perceives disability BEFORE anything else.
Ask yourself why this would be a bigger deal for him to hear and you to tell than say asthma, or shortsightedness? Then work on why that is.
What is it about the Rosie film that is so NOT your ds?
Autism is a spectrum disorder, so I'm not surprised you're spotting some traits and not others. I'm actually similar- I was assessed for Aspergers and was found to have a significant number of traits, more than a neurotypical person would, but not enough for a formal diagnosis.
I can totally understand your frustration. After all, if he's borderline, it's not a concrete diagnosis. You can tell some traits exist but not others, so you don't know what exactly is wrong. As humans we love to pinpoint what's wrong and give it a name, and if we can't pinpoint precisely it's annoying.
I agree with zzzzz- see how he perceives disability, or see if he notices if he's different. He's still only 9 so won't be at secondary yet. I only really noticed/had difficulties when I moved to secondary, as it throws up a new set of difficulties. For now, though, he seems to have friends and to be doing OK. Just wait and observe for now.
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