Delaying vaccinations due to autism

[WorriedaboutThe]

I have 2 dc with autism. Both present in a similar way for certain things. My 6 y o was late with vaccinations as reacted so terribly to going to the doctor surgery . Traumatic meltdowns and physical symptoms so we did the 8,12,16 w vaccinations but the 1 year and pre school ones were done at 5.5 years (after we had done a lot of work about it and he was able to understand a little more. In that time we relied on herd immunity temporarily. The gp agreed with us (she has now retired)

we are now in the same situation with our younger child although her meltdowns are even worse. The new gp is not agreeing and we keep getting texts and calls saying we need to book catch up appts. I’m not anti vax Im just delaying. We live in an area with high uptake of all vaccinations and dd isn’t at nursery etc (we home educate eldest too so it’s not even like germs are being brought home via an older sibling). I’ve explained to the gp that I can’t risk a severe meltdown (in the past they have resulted in seizures and other physical manifestations that have caused hospitalisation and further trauma ) I just want to wait a bit but the gp is pressuring me - can they actually take this any further and force us or am I still within my rights to delay ? As far as I can see researching online it’s parental choice ?

@romdowa

www.nhs.uk/conditions/autism/autism-and-everyday-life/help-with-behaviour/

Section on distraction techniques in this NHS article.

I totally get you’re worried OP. I delayed DD’s vaccinations, my gp kept pestering me and eventually I caved in and took her. We ended up in hospital, dd had a seizure. She’s now almost 17 and has had vaccinations since, we only managed one covid vaccine as she freaked out but she did manage to have the meningitis and polio vaccinations at school without and issues.

I know it’s hard, no one wants to see their child so stressed but in the long run it’s also something they do need to learn to cope with, it makes future experiences easier. Dd has had to have surgery twice, cannula’s fitted etc.., it wasn’t something we could avoid. A lot of doctors and nurses are equipped to deal with autism and anxious patients.

I wasn’t vaccinated as a child, I have measles when I was 3 and was very unwell, it was a lot more stressful for me and my parents than a vaccine would have been.

She’s 2

Two of mine are autistic. Now adults but big issues around vaccinations and medical intervention.

We have a firm trust base. I never ever compromise this even if it means looking like a complete fool in front of others.

This is the key with the way they process things. They have to know they can trust you no matter what.

So now, and I appreciate it's different now but the same principle applied when they were little. They know I will only ask of them things that I have assessed as necessary for their health and well-being. If it's a medium to low risk I'll weigh it up and decide. If it's a medium to high risk my decision might be different.

So routine blood tests to check things I often say no, if there is a necessary blood test needed they can have all the routine ones taken at that point,
Neither of them cope with bloods or injections. But vaccinations were a yes if necessary.

We found a specialist nurse at the surgery, who'd let them lay down and took her time with each step. They tolerated this, just. Lots of baby steps.

If someone tries to get them in to do it quickly, just refuse. It will set up barriers for all future injections or blood taking for the rest of their life. They don't forget trauma.

You'll get there. Lots of little steps.

Sadly OP, this is just something that you need to get done. The meltdown won't kill them, but the illnesses these vaccines protect against most certainly could, or leave them very poorly.
I was a Covid vaccinator and we vaccinated many disabled adults. The staff were trained in appropriate restraint so we could administer the jab safely (and yes this was necessary with some). Not nice, but ultimately necessary.

Is it possible for the child to be mildly sedated by way of a tablet at home so that when the visit the GP the reaction is lessened?

I delayed in similar circumstances. Both me and my daughter were very seriously ill with measles I would get the jabs.

none of these would work for us currently with dd. We’ve tried headphones before she hated the feeling /tightness as much as she hates noise 🤦‍♀️
fiddle toys would get eaten or thrown

Yes I know what you mean , ds is so compliant now he has more understanding and can communicate a little better. Before it was like his whole world was terrifying and dd acts the same. I think once she is a bit older and not always ‘on alert’ it will be better.

I will ask as this is possibly the only thing that may work instead of just delaying

The reaction you have described is very unusual even in a child with autism and I don't think you should assume it will happen with your 2nd child.
The surgery can make arrangements so your child is in and out of the surgery quickly, not doing it during a child vaccination clinic ( mine couldn't cope with that), minimal adults in the room, minimal talking and minimal physical/ close contact from HCP. You can arrange in advance what is required.
I think the risks associated with not vaccinating are higher.

They will not want to sedate because there are risks with that. A GP surgery is unlikely to do it.

I have to agree it's easier when they little.
Ds is 5 with ASD I can't hold him to get injections or blood tests anymore he's to big and strong for that.
His last blood test was hell I got hurt to the point I was bleeding cause he sunk his teeth into my arm and would not let go.
His polio booster went ok but I left him in his special needs buggy (safe space) and he allowed the lady to do the injection while I danced around looking like a fool to distract him. He did have a small meltdown but I think leaving him in his buggy helped. No one got hurt this time so if he has more blood tests etc I will try leaving him in his buggy to see if it helps.

Ask to be referred to the special needs nurse in your area. There should be one. They are specially trained to deal with this kind of thing

A lot of the texts and so on are auto generated. I explained to my GP back in June we were postponing the MMR and he agreed that was sensible given family history but we still get messages from time to time. They absolutely can’t force you, even if you decided never to have it.

It is your right to delay and the practitioners duty to obtain non coerced consent.

www.gov.uk/government/publications/consent-the-green-book-chapter-2

I am not suggesting not vaccinating but having some evidence based strategies to support your child should the unlikely event happen can be useful.

Your GP is right. A serious childhood disease would be far worse than a meltdown in a medical setting where any reaction can be dealt with.

I’d have thought a two year old would be way easier to pin down and much less likely to remember than a 5-6 year old? I thought you were talking about the preschool MMR vaccines, which yes would be very hard to give to a strongly resistant child.

I don’t think any child wants them done, and we had to pin DS down to get his done at that age. But it was way easier than the preschool ones, and he is NT. He is now 6 and is only just starting to understand why he needs to have them (after seeing other children off school with chickenpox etc).

I don't understand what / why you are asking.

You seem to have very much made your mind up on this.

I do tend to agree with others that there is no point in delaying, but you know your kids best and it's your decision.

But you know nobody can force you. If this is absolutely your decision, you just need to tell the GP to stop pushing it.

My DC was bloody awful at the preschool booster stage but at that point undiagnosed with ASD. It really went pear-shaped at the 12/13 boosters and HPV point and at that age their abilty to hurt the nurse consent is taken into account. At that stage though it was the school vaccinations team not the GP surgery and they were very helpful- they had a ladder of ideas from jabbing in the car to going to a special clinic with experience of SN kids with needlephobia- they were very accommodating possibly due to the amount of kids they covered which would be far more than a GP surgery. Is that an option?

I also don’t really understand how a one year old can possibly resist a vaccination - they are a baby, you hold them tightly and the nurse injects them. NT or ND, I can’t see how it makes any difference at one year old? NT one year olds don’t willingly hold their legs out for a jag either.

You would honestly have been better getting this out of the way as young as possible, and I still think you’d be best off doing it as soon as possible now - your DD will only get stronger and more aware of what is happening.

Talk to your paediatrician to see if some play therapy can be arranged to help with getting prepared for it.

it does seem like in trying to avoid this one problem your risking setting up much bigger issues.

Well no of course they can't force you.

However I would get 1yo vax done when they are one. Babies' brains don't hang onto stuff in the same way as a school age child's brain will, they just won't have the same level of fear or trauma or memory. I know you've had a bad experience but mine was the opposite - absolutely fine with jabs around age 4 but was traumatised by COVID vaccinations when older, and is now needle phobic from that.