Autistic Adult and Hospital Dentist ...

[Petr0s]

Just wondering if anyone on here has experience managing a severely autistic adult (age 31) through the trauma of several extractions under general anesthetic at hospital ??

Patient is severely traumatised by a similar experience aged 12 so can't be "fully informed" prior to the event. If we tell him then he will refuse to co-operate and won't get treated and all the months of planning and chasing the NHS will be in vain. He would otherwise enter "middle age" with a mouthfull of bad teeth so this IS in his "best interests".

We have done our best to give him some warning but this is going to be a "life-changing experience" for him (and us). Plan is to "gently entice" him to visit the hospital car park and then inject him with Ketamine and let the surgeons take over.

Has anyone done this before ?? If so then what strategies did they adopt and what helped with....

- Wound management (stopping him harming himself)?

- Feeding with a mouthful of blood clots and stitches?

- Helping him come to terms with "the event"?

- Etc Etc.

Thanks for any advice offered

PT and AT (Mum and Dad).

[Lindypops56]

As the mother of an autistic adult son myself I appreciate that this must be an incredibly difficult situation. However your son is a vulnerable adult and I’m troubled by the idea of you ‘ enticing him to the car park and injecting him with Ketamine’ I’m also a health professional and find it hard to believe a doctor would agree to this method. Surely there are issues of consent here?? I cannot believe there is not a better and more ethical way of doing this.

[Petr0s in reply to Lindypops56]

Hi , The "Ketamine in the Car Park" solution is agreed by a huge multidisciplinary team and there surely are "issues of consent" which are being put before the Court of Protection.

We have been working at this for 10 years or more and have made multiple attempts at "persuasion" so everyone is agreed that this is in his best interests. Problem is that if we "inform him" in advance then he won't co-operate and there will be a fight and he hwon;t get treated and we will be back to square one with a mouthfull of decaying teeth with associated pain and risks.

Question is ... how do we mitigate the fallout? How would you "inform" your son after the event to reduce the traumatic impact and how would you deal with the healing process ?

[Lindypops56 in reply to Petr0s]

As I said - it’s a nightmare situation for you and your son. It sounds as though you are well supported and the team around you are working in his best interests. Hopefully this same team will provide care for him in the postoperative period too both physically and emotionally.

I wish you all the very best of luck.

[Maisey01]

hi and my brother is 44 and I’m his full time carer, he has Down’s syndrome and autism. I understand your situation fully! It’s a different thing isn’t it, would maybe having a pre med to make him a little sleepy at home be better than injecting him with ketamine? Take some things he likes doing to the hospital, maybe colouring, comics etc. As for treatment, I’m sure once it’s over, you will feel relived! Lots of positive reassurance and praise, treats and ice cream for that sore mouth might help! Hope it goes ok .. best wishes xx

[Petr0s in reply to Maisey01]

Thanks Maisey. Pre-med (diazepam) is available but he exhibits a "paradoxical reaction" to larger doses (becomes agitated and tearfull) so we're very limited.

We will definitely use ice cream tho 😊.

[1946timmy]

Hi my Autistic 45 yr old hates hospitals , anxious about visiting dentist. He had to have teeth out in hospital a few years ago , we didn’t tell him until a couple of days before, we gave him Diazapam before to help relax him before going this was enough to get him in there ok. The hospital gave us the first appointment in the morning, it worked reasonably it was still stressful but it had to be done.

[Petr0s in reply to 1946timmy]

Thanks Timmy. We will be using Diazepam as much as he will tolerate (which is not much, actually, about 4mg max).

2 questions:

How did you stop him "playing" with the wounds in his mouth?

What did you feed him and what did you tell him about eating?

Our "patient" is having 6 teeth removed including all 4 wisom teeth so this will be quite traumatic on both sides.

PT

[1946timmy in reply to Petr0s]

My son takes a lot of medication and another tablet of Diazapam was not problem. When he was about 9 he had a very traumatic time with blood being taken so until 2 years ago he wouldn’t let anyone take blood, so no way of checking his med levels in his blood. We knew he had to have covid vaccination so it was Diazapam and numbing cream. This worked , still stressful, so the GP wanted to try taking blood again used the numbing cream and diazepam he wasn’t happy and very anxious but it worked. Luckily I don’t remember he trying to touch his mouth after the extractions, he didn’t like the salt mouthwash and the taste of blood, we only gave him soup at first , not hot, and anything soft he liked,. Don’t think I’ve been much help. It’s an awful time having to do these things. I think a lot of it depends on the staff doing the procedure and their understanding of Autism. For years we suffered like you but at 45 my son is more tolerant than he used to be. I hope all goes well.

[BenjiB]

my adult son is severely autistic and has very little understanding so we can’t explain anything to him. The last time he had teeth out we went to a specialist dental team who work out of our local hospital once a month so the ward they use is completely empty except for the team. We started with a pre-med and then when he was relaxed we had to use gentle restraint to administer gas to knock him out. Once out they put him under completely. There’s no other way to administer GA and it’s very quick.

As for after care again we can’t explain so it was just a matter shadowing him for the first week to keep him from messing with his mouth.

It was an exhausting experience and one I don’t want to repeat. I’m paranoid about teeth brushing and make sure it’s done thoroughly twice a day, also no sweets and only water to drink and still he had a cavity.

I’m very surprised at anyone administering ketamine in a car park.

[Petr0s in reply to BenjiB]

Thanks Benji, I think we will be working shifts to keep telling him "don't play with that" and we plan to keep his hands clean etc. etc.

We had a similar experience to yours when our son was 12 and the "gentle restraint" plus gas-mask they used has caused so much mental trauma that he will not cooperate with further dentistry and now he desperately needs it.

The "Ketamine in the car park" plan has been bought off by a huge multidisciplinary team and by the Court of Protection. We tried once before with a ketamine drink but he became suspicious and rebelled. This time they're going to inject him while trpped in a car.

Question for you : Has your son's attitude to home/car/travel and healthcare preofessionals been affected by the experience ??

We are very worried that ours will become fearfull and introverted and will never cooperate with anything ever again. It took him 15 years to get over the previous experience and he's still very worried every time we drive near the hospital.

PT

[BenjiB in reply to Petr0s]

We were lucky with the aftercare as he was at residential college at the time and he went back there after the surgery so he had a whole train around hun 24/7 to stop him fiddling in his mouth. They had to hide all the knives and scissors as he wanted to cut the stitches !

I just don’t know really if it’s affected him. He’s non verbal and has very little understanding. He’s very wary of the hospital and the dentist as he picks up on the fact that something will be done to him. Like you though I think it’s something that has to be done. My son gets suspicious too. He takes a lot of medication and looks very hard in the pot to see if there is something extra in there 😁 he has his first lot of dental treatment under GA when he was 7 as he had overcrowding. The nurse gave him orange juice with a sedative in but he sniffed the drink and handed it back to me. This last time I just casually handed him a tablet which he took. So hard isn’t it. I can’t bear to think of him having toothache as we know his awful that is.