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Original poster

Delaying vaccinations due to autism

109 replies

WorriedaboutThe · 04/02/2023 08:18

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 ?

OP posts:
WetBandits · 04/02/2023 08:23

You can opt out, but (and I mean this as kindly as possible), if you/your DC can’t cope with getting them to the GP to be vaccinated, what on earth would you do if they had to be hospitalised for something like measles?

Original poster
WorriedaboutThe · 04/02/2023 08:27

WetBandits · 04/02/2023 08:23

You can opt out, but (and I mean this as kindly as possible), if you/your DC can’t cope with getting them to the GP to be vaccinated, what on earth would you do if they had to be hospitalised for something like measles?

The thing is I do want them done but not right now.

I understand your point about measles etc but I feel that if I do them now we will 100% end up with trauma and in hospital whereas it’s not definite dd would ever even catch measles etc so I’m trying to work with whats more likely to happen if that makes sense

As ds is vaccinated and they aren’t in childcare/school and we live in a high uptake area (according to the gp) I feel like the risks are low

OP posts:
cptartapp · 04/02/2023 08:30

You can delay as long as you want but IME the older the child, the worse it is. One year olds scream and cry with four vaccines whatever. But it's done in less than a minute.
No one can force you but I can't imagine it will get easier as they get older. Could they refer you to paeds if there's risk of hospitalisation?
Practice nurse.

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Sleepyblueocean · 04/02/2023 08:34

They can't force you. My son (older but doesn't understand) has had vaccinations in the car so he doesn't have to go inside the health centre.

UniversalTruth · 04/02/2023 08:36

Do you have a DH who can take him? Not the same scenario but my child has a (milder) meltdown at injections/blood tests etc if he's with me, but not if he's with DH.

I would just get it done, it's harder to pin down a 5 year old, I know, I've done it.

Original poster
WorriedaboutThe · 04/02/2023 08:37

cptartapp · 04/02/2023 08:30

You can delay as long as you want but IME the older the child, the worse it is. One year olds scream and cry with four vaccines whatever. But it's done in less than a minute.
No one can force you but I can't imagine it will get easier as they get older. Could they refer you to paeds if there's risk of hospitalisation?
Practice nurse.

Yes the actual injections are quick but we then would have a meltdown lasting hours and hours which progresses through screaming crying vomiting breath holding then seizures self injury and broken blood vessels . On one particular one we also ended up with dd dehydrated and ended up in hospital. Ds used to do similar and woukd be hospitalised .

once he got to about 5 we started to walk past the surgery, had some picture routine cards, watched animations about the drs, it took just over 6 months of this alongside other therapies and we were then able to complete his vaccinations but it seems when younger they just can’t cope / process it

OP posts:
Sleepyblueocean · 04/02/2023 08:39

I don't think you can assume it will get easier as the child gets older. What is the issue with the GP surgery and would reasonable adjustments help?

Original poster
WorriedaboutThe · 04/02/2023 08:39

UniversalTruth · 04/02/2023 08:36

Do you have a DH who can take him? Not the same scenario but my child has a (milder) meltdown at injections/blood tests etc if he's with me, but not if he's with DH.

I would just get it done, it's harder to pin down a 5 year old, I know, I've done it.

I feel like dd will be like ds - impossible to vaccinate now but when older after therapy etc totally compliant as ds was . I’ve tried to say to the gp but they just keep pushing that it must be done now to catch up and I’ve tried to say I will - just when dd is ready

OP posts:
maddy68 · 04/02/2023 08:41

Honestly? What is the point of delaying. In the meantime they could catch one of the diseases and be hospitalised or worse. Which would be far more traumatic. My son is autistic. I understand your concern. But it's a parents job to get this done

Twizbe · 04/02/2023 08:41

Could the nurse come to you to do them? If she comes not in uniform as well so it's not clear she's medical.

It might be less of a meltdown if they're in their own environment.

I know it's hard. My daughter is NT but after a hospital stay and 'hand medicine' she's terrified of the doctors. She wants to be one but she won't go to one. When we did her preschool vaccinations I had to physically hold her down and the nurse did it in her leg while she was covering her arms.

I'm glad she's now done for jabs until she's 12. She flatly refused the flu nasal spray.

cptartapp · 04/02/2023 08:41

Then continue to delay and ignore all messages. Nothing they can do. We have many parents that ignore similar messaging but the practice has to be seen to be trying.

Original poster
WorriedaboutThe · 04/02/2023 08:44

Twizbe · 04/02/2023 08:41

Could the nurse come to you to do them? If she comes not in uniform as well so it's not clear she's medical.

It might be less of a meltdown if they're in their own environment.

I know it's hard. My daughter is NT but after a hospital stay and 'hand medicine' she's terrified of the doctors. She wants to be one but she won't go to one. When we did her preschool vaccinations I had to physically hold her down and the nurse did it in her leg while she was covering her arms.

I'm glad she's now done for jabs until she's 12. She flatly refused the flu nasal spray.

I couldn’t do that as home is their safe place and I feel that would really violate that and cause more issues long term. Depending on level of understanding/ communication I may be able to start a bit earlier with dd doing work around visiting the gp/vaccinations as ds wasn’t ready till 5.5 but dd may be earlier . Currently the world is just a terrifying place for her we have really struggled and taking everything slowly

OP posts:
Lizzy1328 · 04/02/2023 08:44

Sounds like it's you making it into a massive deal! Get it done then go somewhere with the child to distract them.

Original poster
WorriedaboutThe · 04/02/2023 08:46

Lizzy1328 · 04/02/2023 08:44

Sounds like it's you making it into a massive deal! Get it done then go somewhere with the child to distract them.

I haven’t ever been able to distract them once they are having a meltdown it’s like they aren’t even ‘present’ I can’t get through at all can’t calm them can’t distract them

OP posts:
Original poster
WorriedaboutThe · 04/02/2023 08:47

cptartapp · 04/02/2023 08:41

Then continue to delay and ignore all messages. Nothing they can do. We have many parents that ignore similar messaging but the practice has to be seen to be trying.

I might write in so they can add to dd notes just so they know I’m not refusing but just delaying and explain why so it’s been done formally

OP posts:
mumoffourminimes · 04/02/2023 08:48

Is there an ASD support group or resource you can see what's helped others with getting the vaccines done. I imagine this is a common challenge for parents of children with ASD

handmademitlove · 04/02/2023 08:49

If the issue is around any medical intervention rather than specific to vaccination, you could ask the gp for support eg play therapy to improve the situation. Our local hospital offers this for children who struggle to access medical help. You never know when you might need it and it is better for everyone to start working on this sooner rather than later. If the issue is specific to vaccination, there may be a specialist team available to help. My DD had her vaccines done by specialist nursing team rather than in school due to needle phobia. Rather than ignore the gp, ask them for help with this.

mumoffourminimes · 04/02/2023 08:49

If the constant messages are annoying you, I would email in a formal manner and request that they stop. Harassing you isn't going to help.

romdowa · 04/02/2023 08:50

Lizzy1328 · 04/02/2023 08:44

Sounds like it's you making it into a massive deal! Get it done then go somewhere with the child to distract them.

You can't just distract a child with autism from having a meltdown. Don't be so ridiculous 🙄

FurrylittleMonkie · 04/02/2023 08:50

That’s a big wait (4 years or so?) in which your DC would be vulnerable to catching measles etc. so weighing up the risks of your DC finding it traumatic now or being at risk for four years, I know what I would do. Also, your second DC may not respond at 5.5 yrs like your first. They may still find it awfully traumatic.

SoNoWrecksToday · 04/02/2023 08:52

OP perhaps you could post this on one of the SEN boards? There will be lots of potential posters on there who’ve been through similar and will be able to help.

Original poster
WorriedaboutThe · 04/02/2023 08:52

mumoffourminimes · 04/02/2023 08:48

Is there an ASD support group or resource you can see what's helped others with getting the vaccines done. I imagine this is a common challenge for parents of children with ASD

I’ll have a look and see if I can find one. Both of my dc seem to go through an extreme phase where they can’t tolerate anyone near them / touching them etc. ds with a lot of support is much better now but dd is presenting in an almost identical way. It’s really challenging she seems to be very stressed by everything. I know it improved for ds he has challenges now but we can see what helped so know what to do I feel it’s just a waiting game and to rely on herd immunity for a short time

OP posts:
Original poster
WorriedaboutThe · 04/02/2023 08:53

SoNoWrecksToday · 04/02/2023 08:52

OP perhaps you could post this on one of the SEN boards? There will be lots of potential posters on there who’ve been through similar and will be able to help.

Thanks i will try on there

OP posts:
toomuchlaundry · 04/02/2023 08:54

How old is DD?

doadeer · 04/02/2023 08:58

Is your daughter 1? My son is autistic and hates hospital environments, I would always prefer to do it earlier as now he is 4 he is huge and it's much harder to hold him for example he has PICA and has had to have multiple blood tests.

I would rather get it over with rather than risk any more serious conditions.