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.

<sigh>

Not sure what you are a Doctor of Joan, but 'giving in' to a meltdown creates the impression these are tantrums, which is profoundly unhelpful in understanding the experiences of autistic people.

This is how I used to think until I had an autistic child with severe pda. Please reserve your comments for nt children, those of us living this day in day out don't find these comments helpful.

I don't agree that autism without PDA needs a dramatically different response, because I don't believe that any autistic kid benefits from being told very clearly what the expectations are and what they should do to be acceptable. I believe all autistic children, PDA or not, need relationship building, work via special interests, and respect for their sensory and communication differences. I believe all autistic children need a Ross Greene type approach that acknowledges the anxiety basis of behaviour that appears "difficult". Where have I said 'just tell them no?'

I said that you say yes, absolutely, you can have X, on this day. On other days of the child gets upset, you say "wow you really want X don't you? What would you do with X if you had it? Shall we write about it? Let's imagine you have a huge X right now. What would it be like?" I believe in rules around safety - calling on a higher power if necessary. I believe in having your children understand that you completely accept them and have their back unconditionally. None of that is incompatible with trying to make some changes - gently, gradually, kindly - for the benefit of the family.

I do believe that absolutely low demand is necessary where a child has had a mental wellbeing crash. I am 3 years into total low demand with my son who we almost lost when he went into burnout and severe depression in late teenhood. He now gets dressed 3 or so days a week and leaves the house a couple of times a week. So I know all about chucking everything out except "here, eat this food I have made you, yes in your room is fine". Respectfully, that isn't the same as getting into a situation where a 6 year old is controlling the tv, the positioning of the door etc. The pandas approach is about disguising and minimizing demands, using humour, negotiation, low communication load phrasing, not just accepting that this is your lot for ever. I don't agree with that.

Panda approach for autistic parenting

Who said 'this way forever'

Not one single person on this thread who is supporting the op has said that. We have all said that it's a difficult road and that there are ways to support PDA.

Nobody has stated that a 6 year old controlling the TV at all times is okay.

Stop twisting what we are saying.

True PDA is dramatically different to ASC. There is no getting away from that. Ross Greene is fantastic for PDA as I stated in one of my comments.

'we can't do that now' is just a softer 'no'.

If you have been doing no demand, then you know all this. Why are you batting against us suggesting that?

Not one person has said that children controlling the household is okay.

The school family worker would be glad to support you and signpost you to other support services. Have a look at info on Gestalt Language Processing as an aside as this will help you to understand the function of learned scripts. Does the school have a behaviour lead who you could meet with - they will be able to support you with behaviour at home. I work in an ASC school and the dialogue between parents and school is always open and supportive. This link is interesting by the way. https://www.famly.co/blog/gestalt-language-processing-ecolalia-in-the-early-years

not being able to tolerate changes can be seen as anxiety about what is going to happen in the future. Does he accept other things ending and restarting? If so could he work with a timer to have ITV off very briefly and another very motivating activity happening, then gradually increase the time he has it off for?

Does he have a timetable at home (visual?). Could he have itv on that and choose when himself? And lots of ITV symbols, eg. Clean teeth, ItV, get dressed ITv etc. make lots of itv symbols then gradually reduce the number of slots per day

don’t know your DS obvs just throwing ideas out

I work in a special school. I've seen lots of children become so much more settled and calmer within themselves once their parents have been willing to try medication. It can take a while to get the dosage right and can sometimes get worse before it gets better but once it's sorted the difference in some children is astounding. They were before tormented within their own minds with all the obsessions etc it must be so awful for them and to have relief from that must be a blessing

My friends ds was like this. He would scream and kick off if the tv channel was changed from bbc1. Eventually she stopped keeping it on bbc 1 and let him kick off but provided a safe space for him to do so.

@AmaryllisChorus - I think this all depends. Is social support rooted in a profound acceptance of autism and respect for an autistic person's sensory, communications and cognitive preferences or is support delivered from a standpoint that perceives autism to be a pathology? Does the autistic person have agency, or is this being 'done' to them to 'correct' them? Is this being done to support a goal an autistic person has identified, or is this being imposed upon them in order to make them more 'acceptable' to others? Are the neurotypical parties to the situation making similar efforts to create intrapersonal success by adapting their environment and learning about autistic differences? Can the support be provided in a way which doesn't compromise conditions of trust? Is the autistic person at a developmental stage where the support is appropriate and actionable?

We all need to support the socialisation of our children and help them develop skills for adulthood - but the question is, is that provided from the standpoint of of a non-pathologised view of autism and profound respect for the autistic self?

It sounds very much like this is your approach and that you son has thrived as a result?

It doesn't just 'make him sad' though. I don't think you're understanding his condition

@CasadeCoca - The questions you ask are crucial, I agree.

As a parent, it can sometimes be hard to know what is an autistic trait that must be respected, and what is a child testing boundaries that need to be gently kept in tact.

As we know, no two autistic children are alike in behaviour and needs any more than two neurotypical children are alike, so it isn't always easy to spot what is an essential element of the autistic self and what isn't.

What we have to do is work out what our children need in order to thrive and then work out how they are capable of developing the requisite skills to meet their needs as they grow.

Yes all my obvious lived experience and specialist knowledge on this subject inevitably leads one to the conclusion that I don't know what I am talking about here.

I'm just sitting down with DH reading through the replies together, we've had so much great advice and now have a plan moving forward.

We're going to do our best to become a 'low demand' household and meet DS where he is. I like the suggestion of talking 'over' him rather than 'to' him, so it feels more like an action is initiated by him and not us.

Next week I'm going to talk to the family liason lady at school. I will ask if she can support a referral to children's services, I feel maybe she would hold more weight than us just referring ourselves as last time was a total fob off.

I'm also going to speak to DS' teacher about PDA.

We have agreed between us to fund his ADHD diagnosis privately. I have no doubt that he will get the diagnosis as it runs in the family (me and my DM) and his teacher can see it very clearly. I'm happy to try him on medication if perscribed.

I've also ordered two of the books reccomended from amazon, a couple of sand timers and followed the Yvonne Newbold pages on Facebook. I've made a YouTube playlist of her content and I'm going to start sifting through them shortly.

If I have missed anything do let me know.

Thank you all again for the support and solidarity ❤️

I do love it when Mumsnet comes out at its best providing solidarity and support for the OP.

Not heard of game boys?

@AsdQuestion5322 , I haven’t read every post on here but catching up with your most recent one - look into how ADHD assessment works in your area on the NHS before committing to private diagnosis, unless money is no issue.

In my area, you used to be able to get a private assessment and, if diagnosed, start meds privately and approach GP for a shared care agreement once stable/titrated. Now, GPs in my area won’t accept shared care agreements so if you want meds, you need an NHS diagnosis. You may be able to speed this up under Right to Choose, though.

And with the caveat that this is area-dependent and I have no idea whether health boards are allowed to take unilateral decisions like that but this is the situation where I live. (We are currently trying to work out what to do for DC1 who probably doesn’t display enough ADHD-type behaviours in school to qualify for an NHS assessment…)

Prof Jonathan Green's 2023 paper, Debate: Neurodiversity, Autism and Healthcare (https://acamhacamh.onlinelibrary.wiley.com/doi/10.1111/camh.12663 plus there is also a podcast on the ACAMH website)
has some interesting things to say about autism advocacy, and issues within clinical practice, plus new directions for research which are far more respectful of autistic people's self experience and understanding:

...Also arguably seriously threatening legitimacy is the lack of any good evidence base for most of the interventions in common clinical use in autism (Green & Garg, 2018, Sandbank et al., 2020). In terms of generalised or longer-term autistic child outcomes, there is unfortunately lack of effectiveness evidence for even such well known and accepted early supports such as More than Words, Cygnet and Early Bird, intensive individual interventions such as ABA, or complex system interventions such as the Ealing model. In what other area of medicine/healthcare would we find such an unevidenced intervention landscape? It's hard to credit why this should be so true in autism—except perhaps its ubiquity, high profile and the precedent of years suggesting that practitioners are able to use what comes to hand even if untested. And yet do not autistic children and their families and autistic adults deserve the same standard of evidenced care as in other conditions?

Hi @CasadeCoca I see your point (although there are a surprisingly large number of areas of medicine without much evidence behind them - I remember being surprised that tonsil removal was one) but I'm not sure it's very relevant to the OP given that, like the rest of us, she'll probably be offered no intervention at all. We've certainly been offered nothing other than a few leaflets. In five years.

And I'm not sure evidence based intervention to help families like ours even exists. So thank goodness for peer support.

@Phineyj - sorry, it was a bit of a random share, but it is such am important paper (along with Prof Green's phenomenology of autism collaboration with Damian Milton and others). Finally there is a move by clinicians to centre autistic experience and stop treating autistic children as though they were literally 'mindless' and subjecting them to the same behavioural training techniques one would use to train a dog.

This work restores a focus of autistic people's states of being, understanding and the expression of self, acknowledging the profound effect of different sensory perceptions and a shared need for trust and reciprocity (despite past erroneous assumptions about autistic people's social selves).

This work is a bridge to the paradigm shift precipitated by the neurodiversity movement, greater respect for autistic people, and the things that families like ours have learnt through trial and error or from pooled experience via third sector orgs or people like Yvonne Newbold. An evidence base is being built here - perhaps too late for our kids, but massively helpful to point to in discussions with professionals, and very affirming of the stance most people have taken here that autistic states of being need respecting, rather than children being trained out of these so they might 'fit in'.

Sorry - this must sounds like a bit of a tangent, but for those of us that are dealing with significant distressed behaviours, interventions focused on strengthening relational and environmental factors to foster enhanced connection and and reduce the experience of abrupt losses of trust and safety in transitions etc is so much more promising than withholding rewards...

Lots of good advice on here already but in case they haven't already been mentioned I recommend reading books/info/blogs by Naomi Fisher, Eliza Fricker and Steph Curtis. All focused around PDA and been very helpful for us who have a 9 yo with ASD and suspected PDA.

I'm autistic myself and sadly find that even the most well meaning schools and professionals don't quite get PDA. Most schools, including Specialist, are very rarely set up to cater for PDA as so much about schooling involves demands.

It's really nice to see so many MNetters so switched on though! Sounds like you have a good plan OP 🌻

Could you get a big glass diamond like this? Or is he over diamonds now?
https://www.amazon.co.uk/AKORD-Crystal-Clear-Diamond-Wedding/dp/B012S4PBKY/ref=asc_df_B012S4PBKY/?tag=googshopuk-21&linkCode=df0&hvadid=255870769144&hvpos=&hvnetw=g&hvrand=2494102308843358390&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9045147&hvtargid=pla-422646234185&psc=1&mcid=b19aec9010f534f4bac0aa91f267c5c1

To answer your question (at least from my brother’s perspective) - VHS of their favourite show or film over and over and over. He used to get distressed when it finished and had to be rewound. I’m sure my parents heard “it’s all this TV and videos! We didn’t have this in my day! You should just get rid of all of his videos and sod the consequences!”

I work with autistic children with PDA, and I know it's different at home than at school but here are some thoughts. I think the main thing that works is using language that disguises demands. For example, suggesting rather than telling, and stating or declaring facts rather than making it personal. Saying 'I wonder if....?'
Also, try to use humour when possible !
Planning in advance if something difficult is coming up or unavoidable. But generally, just keeping all stressors to an absolute minimum in order to lower anxiety. It's not giving in, it's being aware of how difficult things are for them. Showing them you're interested in their special interests and finding new opportunities to research them. Noticing when they are having a good day and working out if there is some reason behind it, and if so doing that more.
Most of my PDA students hated timers as they found it stressful as time is another demand.
Visual timetables can be used and personalised with pictures of a special interest