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Severe PDA and autism

8 replies

SpecialK01 · 06/11/2021 16:39

I’m looking for some advice, any advice really. My little brother who is 14 (I’m 32) has severe PDA (pathological demand avoidance) and autism but the system is failing him terribly. He constantly threatens suicide, last night he jumped off of a bridge when a train was coming - thankfully he landed on the grass bank. My mum has had zero help from anyone and is continually passed from her GP, to child psychologist, to CAMHS, to social work and around the ever lasting cycle goes with no one supporting him. He desperately needs medication, his anxiety is through the roof, he can flip from one minute to the next. He can’t handle or understand his emotions. His mood swings are terrible. Yet no one wants to helps. Even last night when we took him to A&E, the treatment from the mental health assessment team was disgusting, because he had been waiting hours, he had a meltdown outside, they turned up and he shouted leave me alone I need 5 minutes - I explained that when he says this it’s because he needs to be alone to gather himself yet they then refused to speak to him stating he was aggressive and that it was behavioural. The police and security guards were there and advised that he had not been aggressive the whole time he was there.
It’s terrifying. I don’t even know where to start to try and get him the help he needs because every door I chap on gets slammed in our face and my mum is always told “your going a great job, keep it up”. That doesn’t help anyone.

Does anyone have any advice, any suggestions because we are truly at our wits end.

Thanks in advance

OP posts:
willthatbeall · 06/11/2021 18:09

Try the "parenting mental health" group on Facebook. It is amazing.

The PDA Facebook groups are also good but it feels easy to offend people on them when asking for help as there are PDAers on there who don't like people saying that parenting PDA is hard

My child is autistic with a pda profile. Everything we do is low demand and indirect.

For violent behaviours Yvonne Newbold has super advice (also on FB)

willthatbeall · 06/11/2021 18:15

A further challenge you have is that the hospital environment is not sympathetic to autism and will undoubtedly make things worse. Treat meltdown like a panic attack.
This happened to a family who ended up with their daughter stuck in hospital with autistic needs not supported - vicious circle
www.pdasociety.org.uk/resources/beths-story/

Bethany's dad is on Twitter and tells a real story of hope for this young woman now but of a broken system. twitter.com/jeremyh09406697?s=21

WarmthAndDepth · 06/11/2021 18:27

I'm so sorry this is happening in your family. I am watching with interest. I can second that PDA Facebook groups can feel a bit edgy, and let fly accusations of 'autism mom' etc quite freely when someone new asks for parenting advice, but I have found that simply lurking, reading new posts and following conversations has been extremely insightful and helped me lots.

There are some great YouTubers too. Is your brother aware of himself as a person with PDA; does he have a support network of his own with peers or friends? When DC became aware of the online community of young people with PDA and anxiety in particular, it was a real game changer.
The suicidal ideation and poor impulse control is troubling and very, very hard on family members, so my thoughts are with you.

willthatbeall · 06/11/2021 18:36

yvonnenewbold.com/resources-on-send-vcb/

Her FB support group is The Send VCB Project

SunshineD123 · 29/12/2021 04:50

I know you posted this a little while ago, and I have little suggestions right now. I'm currently going through this with my 11 year old son too, and it's so isolating. Trying to search for answers actually brought me to your thread. It's not nice seeing my son, and your brother go through this. It doesn't feel like it gets taken seriously, and puts a lot of stress on the whole family. As mentioned joining some support groups online offers a little bit of comfort, but still searching for the right support for him and us. I hope things get better for you all too.

willthatbeall · 29/12/2021 20:32

@SunshineD123 really sorry to hear about your struggle for the right support; a very familiar story. I hope you get there.

PineappleMojito · 29/12/2021 20:37

Try Kristy Forbes - autism and ND support. She’s a PDAer herself with autistic, ADHD and PDA kids. She has a FB page and website - her company is called InTune pathways. She has great resources and webinars.

Stormsy · 29/12/2021 20:40

Start making formal complaints.

Does he have an EHCP?

The pda society website is good

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