Hospitalised PDA child

I can't imagine what you're all going through, it's bad enough as an adult by myself. Stay strong for your son and your family. 

The autistic lead person may have a different title,  possibly something to with learning disabilities too. They usually work for the Trust and cover a few hospitals,  although I maybe wrong on that, it might not be a national thing.

Sweet Pea hugs for you and your son.

Hi BlueHawk, 

Thanks so much, tremendously useful to know that I am doing most things already as per your suggestions! Though I have an allocated Autism Practitioner supporting us at home, there is no Autism Lead Nurse for this ward. Also, due to the crazy hierarchies which exist, our allocated Practitioner feels unable to suggest, assuming that a National Inpatient Psychiatric Unit would know what they are doing!!! 

The main roadblock at this time is 'unpredictable/easy to get aggression*. I have tried explaining that it is likely that this is an anxiety response and the longer we keep him hospitalised, the more he is likely to have a low mood and fear of staying too long, resulting in head banging.... 

SW/Community Teams are saying they are doing a risk assessment due to the 'violence' and it looks really tricky whether/when we will be allowed back home!

We will just have to wait, fingers crossed! My main concern, needless to say, is that this extended stay in hospital (nearly 5 months now) is causing more regression than any benefit! I so wish that he starts talking again too ( has been non verbal since hospitalisation) :-(

Thanks so much again, your kind response is hugely appreciated:-) 

Is there a Autism Lead Nurse person that works in the hospital or one that covers that hospital? They may be worth contacting and often do the communicating with the other hospital staff. I recommend getting a hospital passport, although may not be most important right now.

From my experiences, therapy doesn't work, it's not needed right now, reducing the demands and expectations is what helps. Not changing clothes isn't a big problem right now and perhaps not trying to get him to communicate emotions is helpful as an autistic person he may not be able to anyway. Just meeting basic needs is most helpful. The nervous system needs to reset and the hospital environment probably doesn't help aswell as it being an environment he can't control. He needs to be able to control his environment. As another poster mentioned, clothing. Also, managing the sensory environment. Food, could you leave food for him? Just place it there, don't say anything or make suggestions. I find it's best when people 'plant the seed' for me, could be done with the lego too. 

PDA Society may be worth contacting for guidance. Also I recommend searching up autistic pda burnout and if you can, show the medical staff the information. They generally don't have a clue about this. It's not psychological,  it's a whole body nervous system response. 

I'm only speaking from my experiences as an autistic PDA adult. Hope it helps. 

Thanks so much, really appreciate your thoughts! My child, husband and I have been in hospital accommodation with my son, 160miles away for the last 5 months. He absolutely does not want things from home as it reminds him of home and his literal mind does not tolerate any 'mixing'.... Home things cannot be in hospital! I have bought some sensory objects anf requested hospital for sensory modifications to his environment with little response... He keeps his room totally dark, prefers very low volume talk from people. He is gifted in playing piano on his ipad but gets frustrated easily with notes which are not 'super perfect'. He does not like to play any video games. He likes lego but feels unable to let himself 'enjoy' it in hospital as does not want 'mixing leisure with hospital environment'. 

He has simply refused to engage with any psychological interventions and Art therapy too. He keeps saying he is scared but is unable to say what is upsetting him. He stopped taking medications 3 weeks ago and now, we have a stalemate situation about any possibility of discharge home. 

Thank you so very much again:) and yes, I will keep trying my best to advocate for him and get him out of hospital in a safe way. 

Hey, I'm so sorry for what you are going through right now, that sounds really distressing for you and your child.

Hospitals keep people safe, but aren't really designed around autistic peoples needs. I had a close family member who had to be an inpatient for a while, and it's not an easy place to heal. They did manage, but it's not always easy.

Can you bring in anything from home, even small things that are allowed just to make the very unfamiliar place feel more familiar and safe? If he's not engaged in any self care, I imagine he must be finding it difficult to feel safe and come down from 'fight or flight' mode. Even if it's just small things when you are there, like playing music he likes? Anything to engage along side really, or watching videos of games being played? Not changing his clothes and refusing to brush teeth is a way of holding on to a small amount of control in a situation where you feel very much out of control. Maybe these will improve with building connection?

The sensory environment can be very challenging too, with bright lights and bright walls, if you are able to fight for things that might help his particular needs, like if the lights are too bright, or if it's too noisy for him? See if you can speak to the staff who know about autism and make sure they are doing things to help ease the stress he's under.  Try and find out what therapies they are trying and research for ones that might work better? Like I've heard art therapy can be good for kids, where as CBT type therapies can often not work? 

I obviously don't know what will help in the end, but do keep advocating for him and pushing for his needs (if he can write them down for you), to be met. It's really heartbreaking, I do wish for a steady road to recovery for him, and strength for you to help get him there.

Hi Blueplanet,

Thank you for sharing.  We are sorry to hear about your situation.  We are sure the community members will have lots of input.

In the meantime, 

• You can find resources from our website on Inpatient Mental Health Hospitals
• As a family you can raise any concerns with the hospital safeguarding lead, or can contact Patient Advice and Liaison Service (PALS) for support and advice with this
• You can also report any concerns for your child’s safety to their Local Authority Safeguarding Team- details for how to access this can be found on our Urgent Help page.

Take Care

Suzanne Mod