Advice/support for 5yo with PDA profile

[Mintbeecloud]

We have a 8yo Ds with suspected autism(asperges profile) and a 5 yo DS who has suspected autism with a PDA profile. 8yo has been on the waiting list for assessment for 2+ years, but school and we at home are able to manage his needs.

I am really struggling with my 5yo. He has typical behaviours for PDA, will fly into a rage at the drop of a hat at any perceieved stress, and he hits, throws things, screams shut up, I hate you etc. He will not follow instructions, and we have to work with him a lot (put his shoes on for him, get his clothes ready, lots of options, "do you want to brush your teeth or shall I?") He has also started eloping.

The stress of managing this behaviour is causing immense pressure on our family. My 8yo is afraid of our 5yo, and we find it very difficult to do any activities without a lot of screaming and tears. It is exhausting.

DS5 has been kicked out of 1 holiday club due to his behaviour and has been given a warning for another for hitting other children. He has been suspended from school on several occasions (3x internal and 1x external.) This is impacting on my work.

He does know there are consequences to his actions. We speak to him when he is regulated about how his behaviour was unacceptable, we take things away from him and reward good behaviour. It doesn't make a difference to his behaviour in the long term.

I plan on seeking a private assessment for him in September as not willing to wait 2+ years. But does anyone have any advice about how we can survive the next few months? Does anyone have any positive stories they can share on how their PDA children found a way to stay regulated over the long term?

Has DS had an OT assessment, including a home assessment to look at making the house safer and better meet DS’s needs and a sensory OT assessment?

Does DS2 have an EHCP? What support is the school providing? Are the suspensions formal suspensions?

Have a look at your local short breaks offer. Also look at social care assessments. A carer’s assessment for you and an assessment of DS’s needs. On their website, Contact has model letters you can use.

Removing things as a punishment may well be counter productive.

If you haven’t read them, some people find the books the Out of Sync Child and The Explosive Child helpful. Some find non-violent resistance resources useful.

For DS1, have a look at your local young carers service and Sibs.

I am in a slightly similar position though not quite as intense. You have my utmost sympathy and I too find it very difficult. My 6yo is waiting for assessment. Suspected autism and a lot of what you describe is him too - flying off the handle, he hits, throws things, yesterday he pushed me over twice. At other times he is sweet and funny and I so desperately want to understand how to make his life happier. I have 10yr old and my younger son hits him too, it affects our family life a lot and we walk on eggshells at times. I don’t think I particularly have any advice - I came on here today looking for some myself (!) but I was recommended the book “when the naughty step doesn’t work” by Naomi Fisher and Eliza Fricker so I have started that, and I am finding that incredibly helpful. There are a handful of exercises in there about parenting differently, and what your internal monologue will be telling you when you do so, and they are so accurate they made me cry. For now I am trying to get a better idea of the triggers and also to really notice when he is at his best. A lot of it is just about me feeling confident to just stay calm, instead of panicking about what I ought to be teaching him. Already I’ve noticed that a massive thing seems to be food (he is obsessed with kinder eggs for example and I obviously have to put some limits around this!), and he is at his best when he is doing something that interests him, freely and independently. Lego, climbing on things, riding his bike. It gives me at least something to go on, I hope. Solidarity xx

Explosive child approach can help here. Basic idea is that instead of rewards/punishments aimed at motivating the kid, you work with them to develop the skills they need to behave well. So - e.g. - in a calm moment you'd raise a specific incident. 'I noticed you found it hard brushing your teeth last night'. Not - and this is important - 'I noticed you kicked Daddy last night'. Starting with the bad behaviour just restarts the fight. Then you ask them what they think the problem with. You're not aiming for 'I was bad', rather for the reason they couldn't do it. Which might be 'I hate toothpaste' or 'I'm scared of the monster that lives in the toilet'. Then you say why brushing teeth matters to you. And why not kicking Daddy matters too. And then you work collaboratively to find a solution that might work.

The solution itself probably won't work. It might even be daft. That's not the point. The point is that you'll have figured out a tiny part of what's unsettling him, he'll have begun to realise that there are things he can do, you'll both be on team make-things-better, and he will begin, slowly, ever so slowly to take responsibility for his own behaviour.

As the mother to a pda 11 year old daughter... you have my sympathies. I have to home ed her (she does not want to learn anything other than Japanese things and anime currently) and I have had to just lower any expectations for my family. I cry almost daily at the moment. I thought it was important to log this here ass when they (privately) diagnosed the pda I didn't know what it was and when it dawned on me... That was almost 3 years ago, I did the pda society course as well back then and it has not gotten any easier, actually worse with hormones. Depression all sorts. I am so sorry to not be posting a positive story. These kids don't seem to want parents ( well, mine certainly resents it, the whole thing has been heart-breaking )

@fishtank12345 if you don’t want to EHE, you could pursue EOTAS/EOTIS via an EHCP.

Thank you to everyone who has written to share their experiences or offered advice. I have an interesting update

After a nightmare reception year and a difficult summer, the first 3 weeks of Year 1 have been a dream.... DS5 is getting up, getting himself dressed, going into school with no complaints and is loving learning and participating in lessons. He is playing nicely with the others and his teacher reports he has been fantastic.

At home, I have seen evidence of him showing more self-awareness and recognising when he starts to feel angry. Or things that used to trigger him just don't seem to be an issue anymore, he just seems to be able to deal with it.

It has only been 3 weeks so I am anticipating we will see some struggles as he becomes tired or frustrated. But I cannot believe the change in behaviour I have seen, so quickly. Has anyone experienced this?

For some DC, Y1 is so much better than reception because of the difference in how the school day is delivered. Some DC see how the EYFS is set up as chaotic, overwhelming and anxiety provoking, but see the Y1 set up as more ordered and calm.

Another explanation is some DC have a honeymoon period at the beginning of the year or at the start of each term/half term.

I also have a 5yo with asd pda profile. Having the opposite experience sadly, things have deteriorated significantly since back to school.
end of last term was horrendous, almost not getting to school. Things improved over the holidays, but now sliding again. I think because of the demands at school, masking, complying all day, sensory difficulties and then melts at home…

I'm so sorry. Sending solidarity. I hope you have understanding SENCO/Teachers who are offering support xx