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.

'Socially desirable'!!! It's like the neurodiversity movement never happened!

Try looking at Sarah naish videos on you tube. Mine haven't got PDA but have trauma and attachment disorder (they are adopted) and a a lot of the issues are the same. She has a lot of helpful cooling strategies and explains the reasons behind the behaviours which I found really helpful.

Socially desirable for him not for society.

I fully embrace society being more aware of neurodiversity and respecting it. But I have and had no intention of deciding my son is uncapable of things he is more than capable of, just because it takes him a long time to learn what some people pick up naturally.

Thank you all so much for taking the time to respond and give such helpful advice. I really appreciate you taking the time, and it does help to know I'm not alone.

I'll reply properly later on I'm just on my way to a friends child's birthday party 😊

In the 21st Century we increasingly don't see autism per se as a problem but a form of natural variation which should be respected. We increasingly don't expect autistic people to assimilate to a neurotypical model of being social beings, and we increasingly see the attempts to train autistic people to 'fit in' as a source of trauma. (Obviously the origins of this model in behaviourism led to autistic conversion therapy and the use of adversives like electric shocks).

We recognise cognitive, sensory and communications-based differences and seek to improve the environment and social relationships which are currently skewed in favour of neurotypical preferences. This involves neurotypical people changing their behaviour and becoming educated in and more respectful of the differences in autistic being.

This is not to say there aren't autism-related disorders and problematic behaviours. There are, for which people and their families require suitable support. But some of the context for these difficulties are the daily stressors of very poor environmental fit with autistic peoples needs ,the lack of social understanding and acceptance, the experiences of victimisation and the demand autistic people assimilate to neurotypical people's preferences.

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.
own small TV in own space (cheapest from Argos)

The door to the living room has to be open at all times with the sheep doorstep we have, facing the left.
let it go unless causing a draft - let him choose a draft excluder/sausage dog

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.
own personal charger

The tablet has to be on at a particular volume otherwise he screams and throws things.
headphones from Home Bargains - let him choose

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.
sold out. Rinse and repeat. Amazon locker for parcels whenever possible

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 serious conversation about anything he screams and screams and tells us to shut up.
one stays in room with him - other takes children out for a quiet word out of earshot. Serious convos in bed/in the car/out of earshot

It can't continue as we're getting complaints from neighbours.
you can only apologise and reiterate he is autistic

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.
you understand >than anyone sensory overload

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.
It's hard. I do these things alone in the car

It sounds extreme because it is extreme.
He may gain a little more tolerance as gets older.
If easier, remind yourself to take a third off for emotional age so you're dealing with a four year old.
His need for control comes from anxiety and the sensory issues he's having.
Headphones or noise defenders might help.
Adaptive parenting, picking your battles, safe quiet spaces for all of you to retreat to is what's needed as it is both wearing and gruelling.

Well what advice do you have then? Have you experienced this with your own neurodivergent kids? What are your own strategies for dealing with it?

That would be more helpful to the OP than just ‘what ifs’ about autism decades ago

As a parent of a PDAer, I think this is all excellent advice. Doing OT sessions has been a game changer in helping my child with their sensory issues and regulate themselves.

My child has always accepted rules from others and talking “over” them rather than to them (as someone else said) really works. Just telling them loads about what was happening, showing them the pictures of what’s in the shopping delivery etc.

Agree the PDA society PANDA approach is really effective and I identified with so many of the stories from At Peace Parents. Also highly recommend the explosive child by Ross Greene as a great methodology.

The core of our approach has been about reducing our child’s anxiety. E.g. reducing sensory stress and giving our child as much control as we can (but not where it involves controlling others). When they aren’t anxious they are then much easier to live with!

But a word of caution, do consider if your child (or you!) are in burnout as there will need to be a recovery period and this can feel like nothing is working!

OP, apologies if anyone else has mentioned this, but he seems like he may have some pronounced auditory sensory preferences - has he had an OT assessment?

Do you think his dislike of other family members laughing, humming, singing, talking, is to do with the emotional display, or the sound itself? It sounds like he's trying to control something he's finding it hard to tolerate?

I think it is crucial to distinguish between forcing neurodiverse people to mimic neurotypical behaviour and allowing neurodiverse people to learn behaviour they want to understand or acquire, but which needs to be accessed differently or at a different speed from how neurotypical people acquire it.

For example, my son only ate about 8 foods for years and years. He had severe ARFID and FFT as a result. Getting him to eat anything at all for the first two years was a challenge. We never forced him to eat anything. We simply put a wide variety of nutritious foods out on the table, again and again and again and told him what effect different foodstuffs had on his body and mood. NT children take 20 times to trust new foods. DS took about 1000-2000 times to trust new food. If I'd given up after 20 attempts, he;d still be living on carrot sticks, PBJ sandwiches and tinned spaghetti hoops. Now he adores eating in restaurants and cooking. He socialises with friends without food anxiety. Encouraging him, on his own terms, to be more adventurous with food, is one of the most patient and difficult things I've done in my entire life. Seeing him enjoy food and have an adventurous attitude to it brings me (and him) joy.

Same with socialising. He had severe social anxiety. He never picked up on cues from others or overtures of friendship. He was desperately lonely and wanted friends at school, and then a partner too as he grew older. I had to teach him exactly why people might do or say things, what a subtle cue of friendship or attraction might look like. I suggested ways he might respond and we discussed which of these felt right to him. We discussed how to cope if what he read as a cue turned out not to be one. He just needed and wanted to feel that prepared.

I had to explain we all mask a lot of the time, especially at work or at parties or on dates - it's just NT people don't find it so exhausting. We all feel like imposters, we all make social mistakes, are sometimes attracted to the wrong people etc. He wanted to know this stuff. He has learned it. He now goes abroad once or twice a year with one friendship group, on holiday in UK with another group of friends, shares a flat with a third group of friends, has dinner once a week with a fourth group of friends who share a niche interest with him, plays in a band with a fifth group of friends. He's so bloody popular he can barely keep up!

We did the same for romantic relationships - just very gently challenged all his negative self beliefs, helped him negotiate disappointment etc. He's now in a happy LTR, has had two other shorter LTRs and a couple of holiday romances. He's now as confident as the next person romantically - not massively but not fixed (as he once was) on the idea he will struggle to find someone - a mindset he found deeply upsetting but couldn't shift without some help.

@CasadeCoca I'm genuinely interested in whether you'd see this as empowering him to live as he most wants to live, enabling him to access all his latent social skills or if you think this is training him up to make life easier for the NT majority.

Not much help but one of my sons has extremely sensitive ears and we always thought this was the reason he stopped people singing/ humming but we looked at all the things he had issues with and got the feeling no, it was just that he wanted peace. We had a chat to him that people humm and sing because they’re happy and you can’t stop people trying to be/ being happy. We don’t go out of the way to scream karaoke at him but if we’re singing along and he tells us to stop we talk to him.

we had a less extreme reaction to the battery number too but we had a talk about how bad it is for the device to be constantly charging and how we’d have to remove it. Hope some advice on this thread helps to helping your child find away to deal with these things better

I just wanted to say AmaryllisChorus what an amazing job you have done. Will be thinking deeply about all you have written.

I really recommend an OT who is good with sensory regulation. This was a game changer for us. Our son basically had that feeling you get when you miss a step and fall. All of the time. He was always trying to find a way to anchor himself in time and space which led to so many if his behaviours. He now knows how to do this safely, in a way that works.

I also think finding ways to reduce anxiety, that are not centred on control, will also be useful over time as basically its impossible to achieve the level of control desired (I can still remember the hours of screaming that it was dark outside and my son wanted it to be light -he was 7)

The PDA website has lots of good advice.

We found timers, the alexa giving countdowns and written messages helpful. Also routines, visuals like calendars and another big help was rehearsing situations.

I spoke to a GP, in my professional capacity, recently, who had never heard of PDA (we often refer parents to their GP for further referrals to CAMHs etc). This GP was a similar age to me, so I was quite surprised that she’d never heard of it (I’m definitely not an expert, but I’ve done some reading!). I’m telling you this so you’re not disheartened … keep pushing for the correct help!

That's very kind of you, but actually all the respect goes to DS. He is one of the most phenomenal people I've ever met. I would say that because I'm his mum. But other people have said it too. He just sticks at things. He lives life on his own terms. He doesn't try to fit in - he very much finds his own tribe. But he's so likeable that quite a few tribes want him! And he has guts and tenacity. I couldn't love or admire anyone more than I love and admire him.

I have a 12y pda-er. We went through a few years of hell when young. But now we have a lovely peaceful household. They even do little chores now and get picket money!

You need to go no demand for a while. Maybe a long time. It was years here with only 2 rules in the house, you don't hurt your siblings and you go to school. Mainstream with ASC unit who worked very hard for him to thrive.

Read Ross Greene 'the explosive child' then search for his lectures and other books. If you're on Facebook there are PDA pages, but beware they can be very confronting as run by PDA people. But they are trying to help. There is a lot of drama at the moment, but you can ignore that.

You can and will get through this, but you need to change your thoughts around parenting. You can't use typical parenting with PDA. It's difficult, and goes against everything we're led to believe about being a parent. You may lose friends and family as you learn to trust your child. You will need to work with and not against them. It seems so counterproductive, but it WORKS.

Sending you love. PDA is a minefield. But it is worth working with.

They were the 'naughty' kids. Left to roam around 'causing trouble'. Constantly in detention. I look back and I can name several kids in most years at school this would refer to.

Remember, in the 90's kids were mostly out of the house. PDA children will have been having the same issues, but just out all day, so it wasn't seen.

PDA needs a very different approach to ASC without PDA.

What you mention can be done, but it takes time(often years) and trust. It is absolutely not as you are making out. It is not permissive.

As I have stated, we have got to a place where we can carefully place demands, and he is learning how to regulate himself, and it's been a difficult journey for him. But it's wonderful to see.

But honestly 'just tell them no' isn't useful or helpful for PDA children.

Hi OP I haven't read the whole thread but what you said about social services saying no short breaks were available does ring bells. You have to be very 'robust' with social services or you won't get anything
Insist on a carer's assessment, say you are barely coping. Then see what recommendations the assessment makes.

I know it's awful but you have to fight for what you and your son are entitled to.

Hi OP, we have a PDA child and it was v hard between age 4 and 8. She's now 11 and things are much better. She's more hyperactive though and that was more noticeable than the repetitive behaviours.

I take my hat off to you as if she'd had siblings I think we might have gone mad...

A few ideas.

I found a Facebook group for PDA parents locally. I can ask all my strange questions on there and they get it. She's actually not that extreme apparently...

If ways of doing things work, we do them even if other people think they are odd.

She's a massive sensory seeker so we've always done loads of sand, dough, swings, mud, sounds, fidgets, trampoline, swimming...

A lot of tag teaming with DH. We have also really prioritised relationships with people who get us (and looking back, all of them if not neurodiverse themselves, have a family member who is).

Play therapy was helpful (for her) and NVR for us (Yvonne Newbold is good).

Good books are 10 Days to a Less Defiant Child and The Explosive Child.

And one of my best purchases was Honeywell construction earplugs.

This definitely sounds like a PDA profile to me.... my DD has ASD and PDA and I think my dad does to.

My DD is 15 and we have definitely been on a journey but she's doing ok and so are we.. we had her diagnosis around 7 so we have had a long time to adjust and adapt.

My son also has a diagnosis of ASD and ADHD... we are a very neurospicy household!

We have both NHS and private diagnosis... the private diagnosis was most useful as the assessment was so through and the process itself was usefull to learn about the kids and us as a family.

I would suggest that you also read as much as you can about PDA and join found etc.., connect with others in the same/ similar situation and don't compare yourself to others that are not ND.

Good luck and take it a day at a time...

Radio on a certain station. Meals on set days. Certain clothes or combinations of clothes. Beds made in exactly the right way. Objects in just the right place....

I think DD is PDA (pretty well regulated now at great expense!) and most of her screaming wasn't over tech as such but over things not being how she expected

I wouldn't give a six year old a tablet let alone one with ASD.

What would happen if you said it was broken and took it away?

Surely you can't live your life just giving in to every single melt down?

I get that - but this isn't a pony.