Learning about autism

[Ironer]

DS13 was recently diagnosed with Autusm. He is in mainstream school but we can foresee struggles starting. He masks all day so life at home can be difficult with unpleasant behaviour and reactions. Screens help but he seems to need them more and more, His attitude is terrible, he has so much anger inside and often hits out.

Autism is new to me and I’m struggling to understand how to react and deal with these outbursts. Should there be consequences? Do I remove all demands?

I want to learn and help. Any resources out there for understanding autism and parenting autistic children? Be nice to hear how others cope and manage situations like this. Thanks

Hi @Ironer first of all, it already sounds you know quite a bit about autism and knowing about masking is really important and so many school staff just dont get it.
If he’s masking all day and letting it all out once home though, you can be pretty certain that school isn’t meeting his needs. Unless his needs are supported at school, he will possibly continue to have home meltdowns. That’s very hard for all of you.

Im guessing you’ve already chatted to your sendco? If not, it would be good to arrange a meeting with them and anyone else you think plays an important part of his school day - head of year/form tutor maybe?

We found that once DS was at secondary, it was really tricky to get the sendco to pass info onto DS’ tutors and so messages weren’t relaid and people misunderstood him. This then led to him getting multiple detentions for things he had misunderstood or when someone else had been at fault but he didn’t speak up as he’s selectively mute. Basically secondary felt like a bowling ball hurtling down the alley and whacking into all the skittles and them flying everywhere!

Not that I’m trying to paint a negative picture but due to the sheer scale of secondary schools, it’s much harder for parent communications to carry on as easily they did at primary.

Do you know if there’s a Hub at his school, where he can go at lunch or break or even in lessons, if he’s finding it hard to self regulate? Being able to recognise and manage his anxiety (often thought of as anger) and then being able to take himself away from a situation and self regulate through stimming or whatever, can be another really useful thing for him.

I find lots of instagram and TikTok accounts extremely useful.
I will list a few here for you to check out. I found them more personal and more helpful than website but obviously there’s the National Autistic Society etc and MIND, who have some good info.

ellsbetterlife

arfidawarenessuk (In case you think your DS may have eating difficulties linked with his autism)

thisisimmie

theautisticlife

For us though, managing meltdowns by starting the zero demand parenting technique really worked. It took a little while to learn how to almost unlearn our parenting and how we disciplined him, but after a few weeks it was nearly 100% better.

That’s not to say he went to school and after only 2 terms we had to remove him and home school, then EHCP and special school BUT it made a huge difference to our family home life and everyone was a LOT less stressed!
When a child is totally unregulated and overwhelmed, taking away demands makes a massive difference.

@Verbena17 thank you so much for replying to my plea for help, really appreciate the recommendations too. He's only just been diagnosed, SENDCO are preparing something but it's not in place just yet.

DS is very reluctant to do things differently, so although school have a hub where he could go, he simply won't entertain the idea.

We've always parented traditionally, so to completely remove all demands feels impossible. Don't get me wrong we've reduced a lot but allowing him to be totally unregulated doesn't sit comfortably, particularly for the impact this would have on his older sibling.

What I find hardest is knowing how bad things are going to get. If we keep going as we are, is he going to have a total melt-down, not attend school and do nothing but game all day/night? At this moment in time, there is no way he would consider attending a different school. If I knew now that by reducing all demands at home will mean he can stay in mainstream school and get through his GCSE's (A Levels and Uni - wishful thinking) then I would do it in a heart-beat.

I probably sound terrible, I have a lot to learn and find the parenting side really hard to navigate.

My DS was/is the same about not doing things differently and for the entire time he was at school (he’s 19 now), he never told a single other student he’s autistic. He refused to go to the Hub for fear someone from his class would see him.

With regard to zero/low demand parenting for autistic children, it’s much easier than you think.
It’s not necessarily ‘no discipline’ parenting but simply a different way of structuring your phrases to lessen the way the child perceives what you’re saying as a demand.

So for example, if I would normally say to DS;
”Please can you go and put your school shoes on?”.
I would rephrase that as;
”I wonder how many seconds on your watch it’ going to take to put your school shoes on”.

You can automatically see the difference and to an autistic child, which phrase might be perceived as a demand.

Another example with a more subtle demand;
“For tea tonight, would you like potatoes or chips?”
but you could say something more like;
” For tea tonight, I’ve left a tick box chart on your desk for you to fill in and I’ll collect it later”.

Or instead of;
“DS, you need to eat your carrots”
Maybe like;
”DS, do you know which country grows the most carrots?”

That last example doesn’t guarantee they’ll eat the carrots but getting them interested in facts or cool stuff at dinner time can help them get more motivated to eat, without it being a perceived demand.

So all you’re doing is rewording your phrasing of things.

You’re not telling them & you’re not asking them. You’re asking them to race you to brush their teeth to see who can be ready for the school run first etc.
To start with, you can always phrase it like “shall we see if…..”
Shall we see is softer than ‘go and get…’ or ‘go and do…’
eg “shall we arrange a time to play scrabble?”
Instead of “let’s play scrabble!”. Yes, even fun things can be perceived as demands. Then that can create pressure and the child can get overwhelmed and be unable to decide or do anything.

We don’t usually even consider what we’re saying as a demand, but to a child whose cup is probably pretty overflowing by he time they arrive at school, just swapping out the normal phrases can make things much less stressful.

I will find some links for low/zero demand parenting and pop back and post.

Ok, so I quickly found this by Dr Neff.
She also discusses the autism with PDA presentation and I’m guessing that’s not relevant to your DS as you didn’t say about PDA.
However, if you look at the top poster, it gives a really great look at why low-demand parenting is good.
Then scroll down past the PDA stuff to the sections all about low demand techniques etc.

https://neurodivergentinsights.com/blog/low-demand-parenting

It’s also worth noting that when their body is in fight, flight or freeze, they won’t be able to process information properly and might not even be able to hear you and often wont remember what you’re saying, so the concept of lower demands means staying regulated is more lively

low demand parenting is not the same as permissive parenting - where there is no structure/discipline etc.
Another website with info
https://autismawarenesscentre.com/what-is-low-demand-parenting-or-a-low-demand-approach/

@Verbena17 You are a life saver, thank you for taking the time to help, I can't tell you how grateful I am. You've given me more to consider, read, learn and work on than any of the Autism dedicated sites I've been scrolling.

I'm sure he is PDA although the diagnosis report never mentioned PDA - is it recognised as a medical condition? I've read conflicting reports. I discovered PDA last year when he was struggling and flatly refusing to join in things, suggestion of a walk and he'd lock himself in the toilet! So that was the start of reducing demands but realise we still have a long way to go. Love the advice on the wording and must try harder with that.

Your son sounds like he's done amazing to get through school under those conditions and if I'm honest, I think that's all I hope for my DS. A school life that is normal to him, one that he can manage to get through unscathed 🤞

If you haven’t already read it, some people find the Declarative Language Handbook helpful.

Thanks @Ironer and glad it was helpful.
PDA seems not to be recognised as an official diagnosis through the local authority /NHS channels (although that might have changed since i last looked), however, our DS’ diagnosis said ‘ASD with traits of demand avoidance’.
That says a lot to whoever reads it and whether or not the child has PDA, health
professionals reading it should know your child needs a low demand environment/low demand support.

Demand avoidance though can be a very real presentation of anxiety in an autistic person. And it’s very easy to see the relationship between a drop in anxiety and lower demands given. As soon as you introduce too many demands (meltdowns/fight flight etc), the anxiety goes up.

Another helpful thing to lower anxiety and that flight response in particular, is working on their sensory system. It can really help their proprioception by giving positive feedback to their muscles, tendons and joints.
Body brushing, joint compressions, deep pressure (like rolling a gym ball gently over their body), climbing, pushing/ lifting heavy objects, weighted blanket etc) are all great ways to improve and calm their proprioception system.

When their body has that sensory feedback, the system calms and the fight/flight response can be dampened.

There’s loads of great info online about it especially YouTube videos from occupational therapists if you think that might be something that would help.

For my ASD daughter we have worked together with her to get her to be able to identify the difference between "can't" and "won't". This has meant me trusting her than when she says she can't do something I believe her. This often means we don't go to the shop on the weekend because she can't or I make a different meal for her in the evening because she can't eat what is planned. I do notice the "can'ts" often apply to things that she would normally enjoy too and there are far fewer can'ts in the holidays when she isn't using all her spoons trying to cope with school. This week she has the dentist which is upsetting her so almost everything is now can't. She can now tell me this is the problem and I keep my demands really low when she is struggling. I don't punish meltdowns but I do try and talk about them the following day to hear from her what might have contributed. Being a teen is HARD even without ASD and on my side endless patience and love is needed.

Just wanted to say how glad I am to have found your thread @Ironer.
I’m in a similar situation with my Yr 12 son, diagnosed last year.
Still getting our heads around what it all means.

Have you tried taking a course on autism, i recently completed an online autism course and it really helped me understand more about autism, its free as its funded by the UK government so you must be a UK residence it was also really flexible so was able to do it around my work and little one, pop me a DM if you want anymore information

Pls could you send me the link or post it here?