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3.5 year old autistic non verbal son has had a sudden behaviour change after vaccines

120 replies

Nataliewalsh89 · 12/08/2025 09:01

Hi, I’m going to apologise for the long post in advance but I’m desperate!

10 weeks ago my autistic non verbal son had his preschool vaccines, following these he got really ill 24 hours later he had a very high fever and didn’t move from the sofa for a full day in and out of sleep and didn’t eat, the following day he woke up without a fever but a completely different boy just overnight like a switch had flipped, since then he has continuous meltdowns from waking and through the night, he is biting me, smashing his head into the floor and walls , hitting himself in his head and face and seemingly can not tolerate anything this has been constant for 10 weeks now, before this he was happy child, quite chilled and would happily play in his own with his toys for hours and enjoyed going out and playing games with me, he is not happy anymore. I thought he must be in pain, I’ve had numerous trips to the hospital and doctors, where I’ve had to fight for them to look at him , all they’ve done is given blood tests and said there is no sign of infection I believe he needs scans and his head looking at, that it could possibly be inflammation on the brain or even an immune disorder but nobody will listen I’ve had to beg for a paediatrician appointment which I’ve got on the 28th of this month so I will be going with all my concerns then but I was just hoping anybody has had a similar experience and maybe has some advice, it is awful I’m not wanting to get up in the morning it’s screaming and self harm from the get go straight away in the morning
I don’t see how this is a coincidence it all happened overnight from him being poorly from his vaccines . He’s honestly a completely different child and it’s breaking my heart and I’m so depressed.
ive referred to all services who honestly I don’t think they know themselves and really haven’t been any support at all.
thankyou for reading 😩

OP posts:
Nataliewalsh89 · 03/10/2025 05:50

AussieManque · 03/10/2025 05:43

Cranial osteopath, it's like a gentle form of osteopathy used on children.

I'm sorry you're going through this. PANS/PANDAs was mentioned which I'd look into too. Hope you get answers and a solution.

Thankyou I have looked into it

OP posts:
Nataliewalsh89 · 03/10/2025 05:53

Peonyperfection · 03/10/2025 05:47

My son who is diagnosed with ASD found that age very difficult. I think he was frustrated with communication, not being understood and his anxiety really grew with being overwhelmed by the world. From talking to other parents I do think think there are some stages some autistic children go through, the sensory stage and smearing for example, that I found out was quite common.

Hey, my son has always smeared and had sensory issues, my issue was the behaviour change and him screaming seemingly constantly in pain, which happened overnight, he woke up a different boy completely none of the behaviour had ever been seen before I’m talking about the rage , the headbanging and the biting, he has other sad behaviours which he has had for a long time now but these happened overnight m, and to me things don’t happen so sudden and overnight.

OP posts:
Nataliewalsh89 · 03/10/2025 05:55

Nataliewalsh89 · 03/10/2025 05:53

Hey, my son has always smeared and had sensory issues, my issue was the behaviour change and him screaming seemingly constantly in pain, which happened overnight, he woke up a different boy completely none of the behaviour had ever been seen before I’m talking about the rage , the headbanging and the biting, he has other sad behaviours which he has had for a long time now but these happened overnight m, and to me things don’t happen so sudden and overnight.

It won’t let me edit the post, I meant asd behaviours not sad

OP posts:

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Muffinmam · 03/10/2025 06:02

My child is also autistic. Severely. When I was trying to come to terms with it I spent hours every single day talking with other parents of autistic children on Reddit as well as autistic adults. I was looking for anything that might mean my child could one day have a normal life.

Interestingly I came across posts from other parents about after their children spike a fever / get really sick - there is a brief moment when they are almost normal. I noticed this too when my son emerged from his bedroom and very loudly and very clearly asked ”daddy, where are you?”

My son was completely non verbal and had never said mama or dada.

Every so often he gets sick and I notice these glimpses where he is normal.

I’ve listened to other parents talking about the vaccine & autism association. Some parents think that they do cause autism in some children with a genetic predisposition and that the inflammation due to the vaccine can flick the switch for autism symptoms.

To be clear my child is 100% vaccinated. I’ve even paid for vaccines not covered by my government because I absolutely believe in vaccines.

But I’m not so quick to dismiss anecdotal reports from parents regarding vaccines or illnesses and how they influence autism symptoms. This is because I’ve seen this with my own eyes.

I do share your frustrations in getting help for your son. I couldn’t even get my child’s primary care doctor to prescribe melatonin - even with all of the medical reports detailing his autism diagnosis.

As a consequence I’ve been reading all of the medical trials regarding autism (as my child’s GP didn’t even know that many autistic people can’t produce the hormone melatonin). Some studies are more promising than others.

Interestingly illness and inflammation can impact folate levels by reducing folate absorption, increasing the body's demand for folate, and possibly altering the expression of folate transporters. In chronic inflammatory conditions, serum folate levels often decrease due to these factors, while increased folate intake might help to mitigate inflammatory effects.

There has been research into the link between autism and cerebral folate deficiency, or a shortage of vitamin B9 in the brain.

The condition is commonly caused by folate receptor alpha (FR⍺) autoantibodies, which block folate from reaching the brain.

One study found that more than 75% of children with autism carry these antibodies, compared to just 10 to 15% of children without the disorder.

I’m wondering if your son has the folate receptor alpha (FR⍺) autoantibodies which is blocking folate from reaching the brain and the inflammation as a consequence of the vaccine has exacerbated your son’s symptoms?

Here’s an article about a possible treatment:

https://nypost.com/2025/09/30/health/our-autistic-son-was-talking-again-after-taking-leucovorin/

I’m considering getting my child tested for the antibodies. However, I had already been treating him with methyl B12 (taken sublingual as many autistic people can’t absorb B12 through their guts).

Methyl B12 (Vitamin B12) deficiency can lead to a "folate trap," where folate gets trapped as an inactive form (5-methyltetrahydrofolate or 5-MTHF), causing a functional folate deficiency, even if total folate levels are normal. This occurs because B12 is a required cofactor for methionine synthase, the enzyme that converts 5-MTHF back into its active, usable form. Without enough active B12, the methylation cycle is disrupted, leading to reduced folate availability for DNA synthesis and cell formation.

My severely autistic (Level 3), non-verbal child with global developmental delay who had zero functional or receptive language can now talk, interact with his peers and plays team sports. A paediatrician also told me that my son doesn’t appear autistic. This was a child who would line up cars, flap like a demented bird, walk on tippy toes and violently rock his body back and forth and self harm.

Anyway, I’m open to discuss.

I think it’s terrible that children are diagnosed with autism without being given brain scans to detect inflammation (or to rule out any seizure conditions) or a blood test to check for folate antibodies.

Cerebral folate receptor autoantibodies in autism spectrum disorder - Molecular Psychiatry

Cerebral folate deficiency (CFD) syndrome is a neurodevelopmental disorder typically caused by folate receptor autoantibodies (FRAs) that interfere with folate transport across the blood–brain barrier. Autism spectrum disorders (ASDs) and improvements...

https://www.nature.com/articles/mp2011175?error=cookies_not_supported&code=adcf99d4-74c5-4011-b5f2-19549d18c92c

OhNoNotSusan · 03/10/2025 06:48

you can ask for a different sleeping tablet than Melatonin if that isnt working op,

TheDevilFindsWorkForIdleMums · 03/10/2025 06:56

Muffinmam · 03/10/2025 06:02

My child is also autistic. Severely. When I was trying to come to terms with it I spent hours every single day talking with other parents of autistic children on Reddit as well as autistic adults. I was looking for anything that might mean my child could one day have a normal life.

Interestingly I came across posts from other parents about after their children spike a fever / get really sick - there is a brief moment when they are almost normal. I noticed this too when my son emerged from his bedroom and very loudly and very clearly asked ”daddy, where are you?”

My son was completely non verbal and had never said mama or dada.

Every so often he gets sick and I notice these glimpses where he is normal.

I’ve listened to other parents talking about the vaccine & autism association. Some parents think that they do cause autism in some children with a genetic predisposition and that the inflammation due to the vaccine can flick the switch for autism symptoms.

To be clear my child is 100% vaccinated. I’ve even paid for vaccines not covered by my government because I absolutely believe in vaccines.

But I’m not so quick to dismiss anecdotal reports from parents regarding vaccines or illnesses and how they influence autism symptoms. This is because I’ve seen this with my own eyes.

I do share your frustrations in getting help for your son. I couldn’t even get my child’s primary care doctor to prescribe melatonin - even with all of the medical reports detailing his autism diagnosis.

As a consequence I’ve been reading all of the medical trials regarding autism (as my child’s GP didn’t even know that many autistic people can’t produce the hormone melatonin). Some studies are more promising than others.

Interestingly illness and inflammation can impact folate levels by reducing folate absorption, increasing the body's demand for folate, and possibly altering the expression of folate transporters. In chronic inflammatory conditions, serum folate levels often decrease due to these factors, while increased folate intake might help to mitigate inflammatory effects.

There has been research into the link between autism and cerebral folate deficiency, or a shortage of vitamin B9 in the brain.

The condition is commonly caused by folate receptor alpha (FR⍺) autoantibodies, which block folate from reaching the brain.

One study found that more than 75% of children with autism carry these antibodies, compared to just 10 to 15% of children without the disorder.

I’m wondering if your son has the folate receptor alpha (FR⍺) autoantibodies which is blocking folate from reaching the brain and the inflammation as a consequence of the vaccine has exacerbated your son’s symptoms?

Here’s an article about a possible treatment:

https://nypost.com/2025/09/30/health/our-autistic-son-was-talking-again-after-taking-leucovorin/

I’m considering getting my child tested for the antibodies. However, I had already been treating him with methyl B12 (taken sublingual as many autistic people can’t absorb B12 through their guts).

Methyl B12 (Vitamin B12) deficiency can lead to a "folate trap," where folate gets trapped as an inactive form (5-methyltetrahydrofolate or 5-MTHF), causing a functional folate deficiency, even if total folate levels are normal. This occurs because B12 is a required cofactor for methionine synthase, the enzyme that converts 5-MTHF back into its active, usable form. Without enough active B12, the methylation cycle is disrupted, leading to reduced folate availability for DNA synthesis and cell formation.

My severely autistic (Level 3), non-verbal child with global developmental delay who had zero functional or receptive language can now talk, interact with his peers and plays team sports. A paediatrician also told me that my son doesn’t appear autistic. This was a child who would line up cars, flap like a demented bird, walk on tippy toes and violently rock his body back and forth and self harm.

Anyway, I’m open to discuss.

I think it’s terrible that children are diagnosed with autism without being given brain scans to detect inflammation (or to rule out any seizure conditions) or a blood test to check for folate antibodies.

The reason your son appears normal after he's been ill is because when the brain is fighting infection it opens up new pathways to cope. So we see glimpses of who they are.....this happened to a friend of mine years ago, her son had been none verbal for years due to brain damage, he was really poorly with an infection and one day spoke clear as day. Then just stopped.....I think it's heartbreakingly cruel. It must be awful being trapped in your own brain.

Muffinmam · 03/10/2025 07:08

TheDevilFindsWorkForIdleMums · 03/10/2025 06:56

The reason your son appears normal after he's been ill is because when the brain is fighting infection it opens up new pathways to cope. So we see glimpses of who they are.....this happened to a friend of mine years ago, her son had been none verbal for years due to brain damage, he was really poorly with an infection and one day spoke clear as day. Then just stopped.....I think it's heartbreakingly cruel. It must be awful being trapped in your own brain.

Thank you for explaining. No one has ever told me this before. I didn’t know it could also happen to people with brain damage.

stayathomegardener · 03/10/2025 07:58

I would yellow card this as vaccine damage and look into mthfr genes/autism and methylation issues.

Agree with an earlier poster that anti vaxers are usually the ones that supported vaccination initially but there were adverse affects.

The only thing I could suggest for brain inflammation is private prescription LDN but no idea if that’s safe for children.

Flibbertyfloo · 03/10/2025 08:15

At your pre-assessment, request he's given a pre-med before they put the cannula in. It will make him sleepy and calm and then it will be easier on him.

Sorry if I've missed it, but if you have BUPA cover why not get him seen privately? Get a referral to a paediatric neurologist. You can do this via the BUPA virtual GP service that normally comes with the insurance and go and see someone asap. Ideally you want someone based at a children's hospital as they're more geared up for the tests. Dr Kinali at the Portland is amazing. One you're in the private system things are normally done very quickly and you'll know he's been properly checked.

Bipitybopitybo · 03/10/2025 08:26

Nataliewalsh89 · 03/10/2025 04:44

Hi what is this please? I’m in the uk, so we have the nhs but we do have bupa healthcare under my partners work medical insurance

Most UK osteos will be trained in cranial osteo. I used this for my son when he was a new born. My only experience is with a new born - there can often be issues following a more traumatic birth. For my son he was forceps born and cranial osteos manipulate to help ease things like latch issues in bread feeding

Seelybee · 03/10/2025 22:42

ScrollingLeaves · 12/08/2025 23:13

How awful. Poor little chikd and poor you.

Could it be that the vaccine triggered an inflammatory response and it’s in his brain like it is for PANDAS/PAN (look up if you haven’t heard of this)?

Have you tried a child’s anti-inflammatory medicine?

@Nataliewalsh89 This. Do look it up. We had exactly the same with our boy (4.5 at the time,non verbal autistic) after the flu vaccine, panic attacks and extreme behaviour responses. They settled after a few weeks but if he is unwell we see signs again. Maybe it could just as easily have been triggered by an illness or infection but he won’t be having the flu jab again. Not well recognised by the medical profession but there are specialists out there.

ScrollingLeaves · 16/10/2025 11:01

@Nataliewalsh89 I hope this is going ahead today and will help find some answers as to how to help your DS.

ScrollingLeaves · 16/10/2025 11:02

Seelybee · 03/10/2025 22:42

@Nataliewalsh89 This. Do look it up. We had exactly the same with our boy (4.5 at the time,non verbal autistic) after the flu vaccine, panic attacks and extreme behaviour responses. They settled after a few weeks but if he is unwell we see signs again. Maybe it could just as easily have been triggered by an illness or infection but he won’t be having the flu jab again. Not well recognised by the medical profession but there are specialists out there.

I was referring to this MRI scan.

ScrollingLeaves · 17/10/2025 14:52

@Nataliewalsh89 how is your ds? Is he any better? Did the MRI scan go ahead in the end?

ScrollingLeaves · 01/11/2025 00:05

Was the MRI scan a help?

Is he getting better?

Nataliewalsh89 · 01/11/2025 09:32

ScrollingLeaves · 01/11/2025 00:05

Was the MRI scan a help?

Is he getting better?

Hi, so sorry we’ve been really unwell the full household, the mri went as well as it could of possibly done, he was sedated beforehand so that made it much easier , because he doesn’t sleep he slept for a further 4 hours afterwards in the hospital 😂
I haven’t heard anything back yet unfortunately they said a few weeks but that could mean anything here

OP posts:
ScrollingLeaves · 02/11/2025 09:35

So sorry you’ve all been so unwell.💐 It is good the MRI was able to go ahead ( and you had a little rest for a few hours!). I hope it can help.

ScrollingLeaves · 07/12/2025 13:50

I was wondering g how your DS is now? Did the MRI reveal a possible diagnosis or solution?

leojeojao · 02/03/2026 23:05

Hi, sorry you went through this, if you don’t mind telling us what was wrong with your son? Is he feeling better? I hope both of you are doing well!

ScrollingLeaves · 03/03/2026 17:52

I was wondering too.

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