To ask you for help about our son with ASD?

[AsdQuestion5322]

He's 6 and for the past two years he has had obsessions about things being a certain way and will give us merry hell if they aren't as he thinks they should be, its getting worse and driving me round the bend 😔

The TV has to be on ITV all of the time, if either of us want to watch something else he'll scream and kick off.

The door to the living room has to be open at all times with the sheep doorstep we have, facing the left.

His tablet. This one he picked up from a classmate and is by far the biggest problem right now. If his tablet is anything less than, say, 60% battery, he screams and screams for it to be on charge. He will not give in to distraction or redirection and insists on being sat with the tablet on charge watching it until it gets to %100 and even then he screams when you take the charger away.

The tablet has to be on at a particular volume otherwise he screams and throws things.

He's absolutely obsessed with confetti since coming home with some from his (special needs) school. He asks for confetti cannons all day every day. If we have any deliveries he expects them to be a confetti cannon and when he sees that they're not, he screams and demands all day long that he wants a confetti cannon. We bought him some for his birthday but he wants them every single day and it's just not practical to have hundreds of pieces of confetti strewn around the floor.

When we did get him some, he'd scream and get aggressive when either of the other children went near the confetti.

We have two other children and if they are told off for anything (reasonably, we don't shout) he screams and screams. If me and DH are trying to have a seruous conversation about anything he screams and screams and tells us to shut up.

It can't continue as we're getting complaints from neighbours.

It just goes on, and on and on and it's driving me mad. I have ADHD myself so have my own sensory stuff going on.

Has anybody experienced anything like this and could you possibly advise some techniques for how to deal with it effectively? I'm at the end of my rope.

Even school are struggling with him and it's a school for solely autistic children.

Edited to add - I forgot a couple of of things.

Nobody is allowed to sing or hum or he kicks off.

I'm not allowed to laugh either. If I laugh he screams at me to stop laughing.

Sounds like he could have PDA profile, my 5 year old has this and is similarly quite controlling and has meltdowns if things aren't as he wants or expects. It relates to nervous system activation (fight or flight response) when the brain perceives a threat due to demands or loss of autonomy. Have a look at PDA Society website. Often, normal approaches or techniques used with ASD don't work and even specialist autism settings aren't as clued up as they need to be. Honestly, it's incredibly hard. it helps to keep demands as low as possible.

Can you see if the NAS offer any courses to parents in your area? Earlybird Plus would be an ideal one to access. Does the school have a family support worker who could provide advice? It’s very difficult but understanding why he needs the predictiveness is key to making small changes. The Reason I Jump is a good book.

You don't say what level of understanding he has? Is he able to respond to social stories and 'rules with reasons' type verbal interventions?

It sounds like he's desperately seeking control to make is environment predictable to him. How you can address this will be different depending on his profile (reward responsive/ demand avoidant/ able to reason etc).

He sounds highly sensitive and very delayed in his emotional regulation. He will need to learn strategies to cope with the feelings created (for example) by someone wanting to watch a different TV channel. What those strategies are will depend on what works for him- sensory strategies/ learning to use words/ CBT or DBT etc

Have you had a meeting with the school to talk it through at length? It sounds like he is using similar strategies there and it will help if you try to address it in the same way.

My situation is not unlike this with my 7 year old who has PDA. Has to have both TV and his Switch going all day long at top volume or he gets very dysregulated - screaming and attacking us. Also can’t let DH and I speak to one another or screams at us to shut up and starts kicking us.

Was obsessed for months with diamonds, questioning us relentlessly for hours every day about different kinds of diamonds, why we couldn’t buy him a diamond, every time a delivery arrived expected it to be a diamond. We did buy a tiny jeweller’s diamond for him off eBay, then there was much screaming and violence because it wasn’t big enough. (He wanted one the size of his fist).

My DS also can’t tolerate witnessing anyone he identifies with being told off, however gently, or getting something wrong and being corrected. If we’re out with his friends and their mum asks her DC to stop doing something, or corrects something her DC has misunderstood (e.g. ‘actually, dolphins aren’t fish but aquatic mammals’) DS will come home massively dysregulated, and fixate on it, insisting that his friend was actually right and the mother was being unfair / unkind / stupid etc.

Things have got marginally better since he got a diagnosis of ADHD and takes Medikinet. There is less violence when he is triggered, and he seems a bit more able to do things he wants to do without instinctively resisting them. A very low dose is remarkably effective for him - our clinician said this is often the case for people with AuDHD, and a more ‘standard’ dose often sends anxiety through the roof.

I wish I could give you helpful advice on how to cope or how to help your child manage the triggers. I wear noise cancelling headphones around the house so the constant TV and video game noise doesn’t drive me mad. I go out for walks once he’s in bed at night, which is the only time I have. Just so I can be out in the world a bit and remind myself it’s there.

Sending you comfort & solidarity. It is very difficult.

Thank you for the replies

So his level of understanding is reasonable, he's verbal but uses 'scripting' in conversations much of the time. In context, but scripting nonetheless. We can have a back and forth conversation to a degree but my daughter (5 NT) is definitely a lot more advanced in that area.

I mentioned a PDA profile to his nursery manager (special needs nursery which he left when he was 4.5) but she knew nothing about it and said she'd never heard of it so I stopped looking into it. Seeing it mentioned here is quite validating actually, I'm going to raise it with his school teacher when he goes back. It is definitely a control thing without a doubt and I think not being in control makes him very anxious.

There is a family liason lady who works in the school and she seems fab, unfortunately I haven't pursued that avenue yet as I was worried I would look like I'm failing if that makes sense? If people think it's a good idea I can definitely ask to speak to her and will ask to be directed to any courses that might help.

You're right in that 'normal' parenting and even techniques commonly used for autistic children don't seem to work with him.

I'm writing this from the bathroom and can hear him shouting at DH for the television remote and this will go on until we give in. He has smashed endless electronics and umpteen other things when not allowed to have his own way.

We try to keep demands to a minimum but it's not always possible to do everything his way and he just blows up.

His teacher (who is wonderful) admits herself that sometimes the only thing she can do is give in to him as he will scream and scream and trigger the other children as he just doesn't stop.

Yesterday the throw on the sofa had slipped slightly exposing the grey colour of the sofa and he went absolutely biserk 🙁

@Bunnyhair and @AsdQuestion5322 what incredibly hard lives you are leading. Un-mumsnetty hugs to both of you. Must be exhausting.
My child had horrific anxiety and violent meltdowns due to his asthma meds - Montelukast. So I empathise greatly.
Sorry I have no help to offer.

Good lord this is like reading about DS, uncanny. Thank you!

Coincidentally he is also waiting for an ADHD assessment as his teacher is certain he has it (no surprise to me, I'm probably who he got it from) as she's another person with ADHD herself and can see it very clearly.

I last spoke to his paediatrician over the telephone about 6 months ago and she agreed for him to be assessed for it but I'm yet to hear about an appointment. I know the NHS is overloaded with people awaiting a diagnosis at the minute so I'm not expecting it to come any time soon.

We were fortunate to get the ASD diagnosis before he turned three as I raised red flags as early as 10 months as I just knew something was different. He was completely non verbal until almost 4 and we didn't know if he'd ever speak, so it's wonderful that he can and lovely to hear his voice (when he isn't screaming)

Do you think perhaps instead of trying to make him accept things we should redirect some of that energy to acceptance?

This morning I said to DH "I'm not having ITV on and that's the end of it" but he got that distressed and disregulated I have now given in because having ITV on in the background (he's not actively watching it) is substantially better than being hit and spat at 😔

If you think PDA could be a factor, have a look at the PDA society website, and At Peace Parents on Instagram.

We have been ultra low demand for years, using declarative language, etc, and it’s probably stopped things from being much, much harder than they already are - but there is still a lot of dysregulation arising from DS’s own internal demands, or demands that can’t be controlled so easily, such as time, or seasons changing.

I have found it ultimately helpful for my own mental health to recognise that there is not going to be a thing I can do - a form of support I can access for DS, or a technique to help him regulate his emotions - that will unlock a massive change. Most accommodations are in some sense harm reduction. And the most important accommodation for my DS is my own presence - I need to be sane and OK enough for him to be able to lean on my nervous system to regulate. So I do whatever I need to do to cope with the environment at home and to prioritise my own sleep. And yes I am medicated to the hilt with ADHD meds and SSRIs.

X post - yes, our accepting things rather than trying to get DS to accept them was a game changer for us. But it was a whole emotional process for me. And also this was comparatively easier to do because our DS is an only child. It is a bigger job to adapt the whole household to the specific needs of an autistic child when there are other DC’s needs to consider as well.

A genuine question I have -

in the 1940s or 50s, what was the equivalent of this sentence?

”Has to have both TV and his Switch going all day long at top volume or he gets very dysregulated”

Is this a 21st century phenomenon, or the 21st century expression of a condition which manifested itself differently when my grandparents were children?

Go privately for the ADHD assessment if you can afford it - it made a big difference to DS’s quality of life when he started taking the meds - he is considerably less anxious when he takes it, and a bit more flexible.

My DH’s uncle, who was quite like my son, was institutionalised in the 50s, age 6. My DH’s sister was nearly put in residential care in the 80s for a similar presentation. She is now an happily married accountant with 3 grown up sons.

Another thing that occurs to me - we didn’t have a TV or a tablet or any games consoles during lockdown (we were going to be the kinds of parents who had wooden toys and spent all our weekends doing edifying wholesome things in nature). DS spent a lot of time banging his head on things and biting himself. He hurts himself and us a lot less with screens.

Have you asked for a carers assessment from your council and are you accessing ",short breaks" otherwise know as respite? Breaks are 100% essential if you are going to keep going and do your best for everyone including yourself.

I do wonder. These PDA demands always seem to be based around screens.

OP what would happen if you took the tablet away, and placed him in a safe room so he could have his resulting meltdown away from your other children? And ‘detox’ him from it?

Thank you so much Bunny for your solid advice, it's comforting to know we're not alone in our experiences with DS but you too have my utmost sympathy because its bloody hard isn't it?

A private ADHD assessment is a possibility and something I would be happy to dip into savings for. My only reservation is that I've read about a private ADHD diagnosis not always being accepted by the NHS. Do you have any reccomendations on where to go?

Carers assessment - I have asked for one of these in the past with a view to accessing short breaks. DS was between 3-4 at the time and I was completely fobbed off by social services whom said that whilst I'm entitled to an assessment there is nothing available that they'd be able to offer me (the short breaks etc). I wonder whether his age at the time was a factor or whether its a postcode lottery? Admittedly, I didn't follow through with the assessment as I was told it was as good as pointless.

I wonder whether a referral from his school would hold more weight than me referring myself.

My goodness - I can imagine screens are a great comfort then @Bunnyhair and a general safety precaution! Strength to you

My son has ASD and will have three things making noise any time he can. As well as running round making noise himself. As he's got older I take the tv off him for short periods of time, always with plenty of warning and reminders leading up to it. So I'll say I'm having the tv in 30 mins just while I drink my coffee, reminders every 10 mins before and then 2 mins before. He obviously keeps checking my cup to see if I'm finished but we have made progress!

From experience, he would get increasingly distressed and end up smashing up his bedroom and/or hurting himself 🙁

I know a lot of people on here aren't fond of screen time but it is the only thing he is remotely motivated by and the only thing that gives us any sort of break from the constant demands and stress.

We went 'tablet free' for a few weeks after he broke one of his tablets as I was adamant I wouldn't replace it and it was complete hell.

Day upon day of kicking off and meltdowns, he smashed two expensive TV's in that time and now so we now have protective plastic over any TV we have.

That's a really good idea, thank you. I'll give it a try!

Yes, I also think meeting him where he currently is rather than constantly trying to bend him to what you feel is acceptable is the answer. Give him some control back and eventually you will, hopefully, be able to manipulate things a bit to how you would like them to be over time. For now though you need to calm things so that he believes life is safe and can get out of constantly being in flight or fight mode, and then build from there. If school is not meeting his needs that could be making things worse. Is he worse when he comes back from school/during term time?

Engaging with family liaison could be helpful especially if they are onboard with PDA. A sounding board is so useful.

I didn’t find the Early bird course helpful in any way. It was very basic, and didn’t cover PDA.

So my daughter has ASD and ADHD and is similar in some ways. BUT I do think some of this is him just wanting his own way ( sorry) the fact that he screams until you give in, says to me it’s sometimes just a battle of wills? I find it incredibly hard to separate out which are things caused by my daughter’s condition and which bits are just good old fashioned bad behaviour. Some of what you describe would go into the bad behaviour category imo and I would deal with it rather than excuse it (and it drive me nuts) now, only you know your son, but have you sat down and considered this at all? Whilst important to manage him effectively, there are other people in your household and everyone can’t just watch ITV forever.

My situation is very similar and I can say it's improved over the years.

My son hated any change of tv channel, if the tv was fast-forwarded, even if he was in another room he would scream. That is generally better now (he's 10 now) but he does like to have control at times.

He is obsessed with the iPad being charged, we now have multiple portable batteries that can be plugged in and a spare iPad on case of damage.

Little obsessions seem to change with the seasons (blinds closed, music on in the car..). We try to offer lots of sensory options because just an iPad isn't enough. It often feels like he rules the roost and it can be exhausting.

There is a Facebook group called Autism Inclusivity. Anyone can ask an initial question, but only Autistic people are allowed to respond. Posting there might give you an insight into how your ds is feeling and how his needs might therefore be met.

I think the early bird course is what you make of it. You have to think about the specifics of your situation. The course leaders/content may not seem useful but I found it helped me reflect on what had and hadn't worked on our house and I was able to talk this over with other parents.