Autism and injections. Help!

[peppermintteadrinker]

DS is autistic and is really struggling with having any sort of injection. When he needed dental surgery, he had to have general anaesthetic.

He hasn't had his HPV vaccination. He was due it two years ago. He's tried for three years in a row to have it and he just can't cope.

It's so sad watching his mental torment about it. He's beating himself up so badly because he can't do it.

Does anyone have any experience of this and can suggest anything?

Unfortunately no useful suggestions but I’m 33, autistic and exactly the same. I was treated as “just making a fuss” as a child and forced etc and it’s made it way way worse. I once ran out of a doctors and made it 3 miles away on foot….

The Covid vaccine brought it out in the open- my GP had nothing useful to suggest apart from “try harder” and I attended the vaccination centre a whopping 8 times. The retired midwife running the centre saw every visit, saw how hard I was pushing myself and was amazing at trying different breathing techniques and talking it through with me. Eventually she started monitoring my heart rate and blood pressure on every visit and came to the conclusion that she thought the risk of me causing myself clinical harm via stress to my heart was greater the risk of me not having a vaccine.

I might not have made it that time but she is the first medical professional who has ever ever taken the issue seriously, took time to listen and understand and look at the bigger picture. I felt heard and respected for the first time ever! She has helped begin rebuilding my trust in the medical profession.

Next time I will be asking for the same person to treat me everytime and look to build trust and a relationship so that’s my best recommendation.

@user1471548941 I am so sorry you have been through all that. Actually I think hearing that this is normal for some people with autism will help him. He's currently really disappointed and upset with himself. He puts so much pressure on himself. It's awful to watch.

I want to reassure DS but while this vaccine is not the end of the world, he may need to have other injections or blood testing in future so I am keen to try and find some way of making this possible for him.

I think we've tried enough times now that it just isn't worth doing the same thing again.

The nurses were v patient and kind but I don't think knew what to do. I think they were trying to help him but it was making him worse. I think having so many people in the room wasn't great either and it was so so hot today.

Thank you for your reply.

Yes I’m the same, and have diagnosed autism and ADHD. I’ve been given diazepam before to get through blood tests. When I was pregnant I did just have to get through it, but somehow it was slightly easier when it was for my baby. Even so, it took me days of stress to work up to each one and I had to re-schedule a couple too as I just couldn’t do it that day.

My daughter (also autistic) is the other way and she basically developed a special interest in injections and blood tests, and enjoys having them which freaks a lot of hcp’s out. Would explaining it all in a lot of detail help? This is what happens, inside your body, with an injection, this is how they know where to aim etc. I have always disassociated through injections and blood tests which I guess isn’t the healthiest answer but does work.

DD has to have a blood test once a year for a particular condition and after a few years reached the point of being completely unable to. She's autistic as well.

We were referred to the Play Therapy team at the hospital who worked with DD over about ten visits, to get her to the point of being able to have the blood test. It was all done at her pace, using a fear-ladder process. She sat and coloured for most visits so she didn't have to make eye contact with the play therapists. In the end they'd developed a plan with her preferences for exactly who would be in the room, where they'd all sit and how it would be done. DD first looked at the doorway, then next visit stood in the doorway, then next time sat in the chair for a while. She chose the staff and they all promised to stick to her plan.

Saying that, she's recently refused the HPV vaccination at school. I need to book that at a catch-up clinic but have to go through the play therapy team and visits again.

Has he tried going with anyone else like an older male

Is it the thought of / fear of the pain, or something else?

im autistic and have had a lot of medical procedures. I used to struggle a lot with anticipated pain - and I once asked a doctor to pinch my arm to show me how much something was going to hurt. Once my brain understood it was bearable and that I’d get through it, I was ok.

(Not saying this will work for him, but thought I’d share my own experience)

Had this with DD, starting with her year 8/9 boosters. She refused, the school vaccination team would/could not force it. They were so helpful though, they went through all the things that had worked before including to let us drive her to their base and just stick her arm out of the window and to let her go to the special extra time and low pressure clinic. I think we had a stab at each and failed, then tried again a few months later. This was supposed to be in the special clinc but I'm not sure this nurse got the measage as they got 1 in while she lay on a mat on the floor while being pinned down and scolded by the nurse. We did not stay for the rest of the outstanding jabs.

Her first covid jab changed everything though - it was in what had been a shop, with so many people milling around and bright lights and massive sensory issues. But the lady doing it was incredibly kind and took as long over it as she could and we'd used emla cream and she was very gentle. Once she'd survived that DD went back and got the rest of the overdue boosters and all the HPV ones and another covid one. She's had numerous blood tests since, been vaccinated for Men B and Hep B - and had two tattoos!

It's not her favourite thing but she's added it to the list of things she'll put up with.

Ds has autism (profound) we take him to the hospital and they give him the pre meds for a general so that he can have them.

We tried with various nurses,venues, practice needles (syringe with no needle), play therapy, social stories, visuals, going with another person who was also having the injection and even the highest amount of relaxant/ anesthethic that could be given out of a hospital setting. We will not allow him to be restrained even though the nurses said they would use "kind" holds as we don't want him to be scared of medical staff and/ think that being forced or restrained is normal or acceptable.

Have a think and a chat with him about what circs would be best for him to have them then approach the paed/ gp with that and work on a plan from there.

Hypnosis is probably the best solution for dealing with phobias like these.

Your post made me smile. He tried asking about it but then he just got so in his head about it.

He is very interested in science generally.

I just took my little boy for blood tests today. He’s being assessed for autism.
The doctor who ordered the blood test also did us a prescription for lidocaine “numbing cream”. The pharmacy also gave us a couple of the clear dressings to put over the cream while it worked.
It worked an absolute treat. He didn’t look while it was being done but he managed it brilliantly and sat through the procedure.
Would this be an option?

I have 3 teenagers with ASD and they are all terrified of needles as they feel the pain differently and are very sensitive to scratches like that. They now all have different techniques - .y eldest will have the emla numbing cream on the upper arm and it helps a lot. My daughter knows she has a right to say no and no one will do it against her will. She declines a lot of things and the huge distress just isn't worth it. It's nothing she can't catch up when she's older and able to cope a bit better. It physically feels different for some ASD children.
Our local hospital also has a play therapist and a special room for support children with additional needs to have procedures done. We have blood tests booked in there. Make sure he knows he's not a failure for not having it, he's scared and it hurts, that's very valid.

No. I asked if he wanted his Dad to go with him but he said no. His Dad would not be very patient I don't think. I don't think we have anyone else.

He asked how long it would take and they were good at explaining about the size of needle etc. I'm not suits even the pain exactly. I think he finds it hard to articulate what bothers him exactly. Probably more the unknown of how much it hurts like you say. And knowing it will hurt and then having to force himself to do it.

That is a great suggestion. Thanks 🙏🏻

With DS1 was that i explained to the person without him to not mention the war. Tell me in advance everything that needed to be said and then when he came in (with arm already out) if they could just ask him “ what is favourite subject was?” Or “ which book he was reading. Basically engage his interest without showing him a needle.

Best one we had was he was chatting to one nurse about maths while another sneaked up on him. Dream team they were.

Another vote for lidocaine cream, it used to be called Emla cream. I'm autistic and struggled with blood tests, but over time have built up a routine that I'm happy with so it's no longer such a stressful process. I hope you find something that helps your DS.

We also have success with the numbing cream (both arms just in case) and headphones on while it is happening with his audiobook that helps him regulate. He's coeliac so has to have at least one blood test per year and this year was a real success with this strategy and I think he also enjoyed poking himself while his arms were numb