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Autism diagnosis or not?

61 replies

bobstersmum · 16/02/2020 20:55

Ds just turned 7. Was referred age 2 for autism assessment due to hand flapping. After a year of all sorts of tests he was discharged, we were told yes he does have autistic traits but so far he's not held back by it. Fine. Then he started school and reception teacher noticed other things that I didn't notice, mostly that he takes language very literally, this causes problems most days. However the senco at the time stated that as he gives eye contact he couldn't be autistic. Fast forward a little, he's now in year 2. We have had him coming home in tears several times since September as he does not understand certain things the teacher will say. It's usually when they use metaphors but jokes and sarcasm as well just upset him, it's like he can't process it. There is a new senco now and they recommended that he was re referred, his first appointment came through very quickly and its in just over a week. Ds is very clever but tells me he struggles at school because of the language thing, he's started to get upset about going. He is difficult to get to sleep at night and will sit and cry his heart out because he says he can't get to sleep on his own. He shares a room with his brother so he's not alone but he breaks his heart at being in his own bed so usually ends up in with us, he's out within seconds then. He doesn't eat much, will only eat dry foods nothing moist, won't eat meat. Doesn't understand when it's a siblings birthday it just breaks his heart, makes him sound like a spoilt brat that I know but it's not like that, he just can't cope with some of his emotions and doesn't understand certain things. If we tell a story about when he was a baby or little if it's something funny he can't laugh at it he breaks down because he thinks we are laughing at him. We literally have to watch what we say all the time. He's a happy boy aside from this, if things in his little bubble go as he expects. The reason I'm posting is I think we need support or some sort of help to help him? I don't want to have to explain every year to his new teacher about his little quirks and funny ways. His teacher this year said she hadn't noticed anything about him, this is possibly because he just fades into the background in class, he doesn't make a fuss hes just quiet and saves all his frustration for when he comes out of school. He still flaps and also has some little tics as well. What do I do? Do I push for some help /diagnosis or just let them decide? I'm scared that my lovely clever boy is going to be left behind at some point, possibly when he goes into juniors but most likely when he goes to secondary, I really think the massive change then will be too much for him. I just don't know if I'm over reacting.

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BeBraveAndBeKind · 26/02/2020 18:53

The assessment is a long process as is getting an EHCP to support him at school but absolutely worth it. That document allows you to lay down how the school have to support him including using clear, unambiguous language with him to avoid confusion.

My DS is 18 now and we finally got his diagnosis just before he started secondary school. He had 20 hours of 121 support a week and I honestly think that if not for that absolute angel of a TA, he wouldn't have been able to stay in school.

He got enough GCSEs to get a place on a music tech course and hopes to become a music producer.

He's very literal in his understanding too but we've worked to teach him idioms (my favourite of his misunderstandings was that a cat burglar breaks into your house and steals your cat!) and his little brother has been a sarcasm klaxon for him too which has helped.

bobstersmum · 26/02/2020 18:57

Thank you @ThisIsBlossoms

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bobstersmum · 26/02/2020 18:59

@BeBraveAndBeKind that is brilliant about your ds, and some things are funny aren't they. Its great that you've found a way to help him, I hope we can too. He's having a social communication assessment too this time which I don't think he did last time, hopefully that will identify which areas he needs help in.

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bobstersmum · 26/02/2020 19:06

Felt quite emotional today because ds asked what am I here for, why are they asking me things? I didn't really know what to say but I sort of said they want to see if you might need some help at school so that the you don't get confused. He was OK with this. Then I felt a bit of a fraud when telling my friend about the assessment because she said I don't think there is anything wrong with him. To others he probably does seem fine. But they don't see every aspect of his life.

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peanutbuttermarmite · 26/02/2020 19:22

Good news op - sometimes friends want to provide reassurance and that can be unhelpful when you’re trying to seek professional help. As you say, you know him best.

BlankTimes · 26/02/2020 20:00

The literal language interpretation is called Semantic Pragmatic language if you want to read up on it.

Aarrrgghh, people say such stupid awful things I don't think there is anything wrong with him That's because there isn't anything wrong with him you [insert term of choice]

Please OP, before your son gets the idea that he's somehow wrong or inferior because he does a few things differently, start collecting examples of different being good and different ways of doing things being equally as good as the way the majority do things. then you'll have an explanation to hand when the inevitable question arises.

e.g. computers, Mac and Windows are both computers. They process things differently, but they can both do tasks equally well.

The majority of people use windows, the minority use Mac, but both systems are equally good.

In the UK most cars have gears, a much smaller amount are automatic, but even though they are driven very differently, they are both cars and can get people to their destination equally well.

You've had some fabulous advice in this thread, but no-one's mentioned his emotional age. Many - not all, it's never all - children and young adults with AN have a much lower emotional age than their chronological age, the usual figure is around two thirds emotional age of their chronological age. It helps to remember this when people say 'at his age he ought to be able to blah blah' particularly in social situations or where a certain standard of behaviour is 'expected'.

bobstersmum · 26/02/2020 21:55

Thank you to everyone for the advice and reassurance I really appreciate it. @BlankTimes I will definitely use your examples to help me explain to him they are really good!

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tiddlerthefish · 27/02/2020 12:50

@BlankTimes Makes an excellent point about emotional age. My DD is nearly 4. She speaks excellently, you'd think she was older if you were speaking to her, it's like talking to a mini adult. Her 'age' in all areas had just been estimated for her ECHP application. Most areas she's well above, literacy, numeracy, physical stuff etc she's around age 5-6. Social/emotional age? Estimated around age 2.

BlankTimes · 27/02/2020 14:00

@tiddlerthefish thanks, I feel it's something that's never brought to teachers' attention and can cause such a lot of bullying by peers and total over-estimation of capabilities by teachers.

I'm absolutely delighted that it's included on your DD's EHCP, it should make things so much easier for her now it's there in black and white.

I really didn't like hearing the 'at her age she should be able to' type comparisons, not just at school but from friends and family too, it's beyond tiresome and so upsetting for the child. Then when said child had hurt themselves because the adult had presumed competence but the child had not fully understood the situation 'Oh well, they won't do that again' sadly that's not true either, it damages their self-esteem so much.

Here's hoping that the difference in emotional and chronological age is being widely publicised nowadays, it can only help other peoples' understanding and help with accepting our kids for who they are.

Silvercatowner · 27/02/2020 15:53

She said I don't think there is anything wrong with him

There isn't anything wrong with your delightful son - he sounds adorable. What is wrong is the systems and processes that surround him that struggle to adapt to his particular needs.

Oh - and the SENCo is not very good at their job.

bobstersmum · 28/02/2020 09:20

Also good point about emotional age, this could very well explain his sleeping trouble and getting upset so easily over things and not understanding. @Silvercatowner I know there isn't anything WRONG with him, to me he's perfect, he's wonderful, kind, clever, handsome, I love him to death. It's just the way people talk isn't it.

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