son upset about idea of ASD

[devonhil]

Hello everyone,

my son is nearly 13 (year 8) and, whilst I have known for sometime something was wrong I have now accepted he is clearly ASD (he has had an IEP suggesting this since year 6). I have tried to gently suggest that we go and have a chat to a psychologist (and get an official diagnosis) but he is extremely distressed, insisting he doesn't have autism and does not want to do it. I've been very positive about ASD being different, not negative, and that it could help him feel better. He is unhappy at his large comprehensive school as he doesn't fit in at all, and it breaks my heart to see him so miserable. He says he doesn't want to be singled out.
Am I doing the right thing trying to get him assessed or should I just drop the idea if it upsets him so much? Has anyone else met with resistance from their child about the idea of being autistic?

Hi, sorry to hear you’re ds is finding his difficulties tricky to process.
My DS (13) has a diagnosis of high functioning ASD (he got it in last 6 months of primary) and before he was assessed, begged us to help him/find out what was wrong with him/he was making self harm threats almost daily/not coping.

However, once diagnosed, things got even worse. He moved 5o large secondary and he just didn’t want anybody other than immediate family to know if his diagnosis. I think DH put that notion in his head as he had mentioned he might be bullied if he told people. Whilst true, I still believe the original school could have helped him if he had come to terms with the diagnosis.

As it is, he now has had a whole year learning online at home (we took him off schol roll) and now has an EHCP and a place at a special school, much more suited to his learning needs.

Maybe you could sit with your DS and look at some short films made by people who have ASD is great [[https://vimeo.com/216052066]] and talk with him about similarities traits and how much more support he could get from friends and schools etc if he does get an ASD diagnosis.

Sorry, that link is wrong....
vimeo.com/216052066

thank you so much for your reply - I'm really grateful for the link. I think that's a really good idea to help him realise that ASD does not equal "weird".
It's interesting that your son felt more secretive at secondary school - I wonder if it's the need to fit in which makes that happen (as it's such a strong desire in teenagers). I'm sorry that your son had such a bad time at school that he required home-schooling (the irony is that I am an outreach teacher and often teach ASD students at home!).
Could I ask how he felt about going to a special school? Was it a relief for him to feel more similar to the other students? My husband wants our son to stay in mainstream as he's worried that he will be less able to fit in if he leaves, whilst I just want him to be happy so can see both sides!

thanks again,

Can you stress about being different which is a good thing and get him out of the mindset that NT=right and ND=wrong?

What analogies can you run with, I like this one although someone who knows about computers could probably phrase it a lot better.
NT people operate on Windows whereas neurodiverse people operate on Mac. Both are computers, both have their good points, both can do similar things and different things but one is not right and the other wrong, they are both operating systems and they are both good to have around.

Has he seen the Rebecca Burgess cartoon explaining the autistic spectrum?
the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

I really like the operating system analogy - son loves computer (like lots of ASD kids!) so will appreciate that idea I think.
I will check out the cartoon too - thanks for the help

To be honest, an ehcp and special school was last resort. He has been doing Interhigh school at home with little success.
We don’t know how he will be and have sold it to him as it has a hydrotherapy pool and sensory rooms etc. He doesn’t say much but is now saying “when I go to new school, me and my friends....”. So we think it’s good he is now acknowledging he will have friends.

Leaving mainstream secondary and his life long friends really upset him but his need to leave and find another way of learning was greater.
He was masking all day, melting down at home, self harming etc, taking 3 hrs to do a 15min piece of homework, then refused to go altogether.

Secondary staff just don’t get ASD and especially didn’t get his need for processing time. He was in top maths set and science due to ability yet couldn’t cope with the speed of teaching.