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AIBU?

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Original poster

Autistic child ?

55 replies

Carol41556 · 13/04/2025 15:06

My son has just turned 5 , I have always suspected something may be wrong since he was younger around 1.5 years when he started to have tantrums. At age 5 , he is really hard to manage at home , he hits his siblings including a baby , attacks me , and every single day has meltdowns over the slightest thing. My health visitor has referred him to the NHS neurodevelopment services to be assessed although this will take around 4 years , at nursery they say he is great , and has no problems , although they pull me to the side weekly to tell me he has attacked his sister, tried to stab her with objects and punched her , they haven't even noted anything down as they didnt think it was serious enough ...even though they have been asked numerous times about his behaviour and even showed videos of him so they would listen to me. I feel invisible to nursery , they just can't see what I'm going through and I want help for him. One teacher told me she disagreed with anything I was saying . He masks his behaviour well at nursery , although they have seen his aggression.
I was advised to apply for cdp for him as although he is my son , I an caring for him twice as much as my other 3 children. I applied and a friend said she would help me fill the form in , when I went to get help she them told me , I'm over reacting, he's just wanting attention , all kids run on roads , hit , have no sense of danger etc...I literally felt deflated and left.
I have since sent this form away but am I right to apply ?
He has to be supervised at night , to the point he now sleeps in my bed as he gets up during the night ,one time taking his younger sister downstairs and climbing up high for scissors and cut her full head of long hair off completely...
He doesn't eat at dinner times etc , I struggle to get him to eat , he talks in a high pitched voice when speaking to siblings which isn't his natural voice , he lashes out and screams every day , he often makes random pig snorting noises when doing things like watching tablet or playing , he has no sense of danger when outside on walks or days out , runs out on road , runs away and doesn't stop when I call him often hysterically as he is in danger and I'm pushing my baby in pram , he likes to climb on kitchen worktops etc , on the cooker , often has aggression that would put himself or my kids in danger when he lashes out or throws things , he can have tantrums that last over an hour ....please can someone tell me I'm not imagining that I think my child is autistic? He is so intelligent, scored 100/100 when health visitor came out to assess him for starting school in August , I did notice he was talking the full time in the voice he puts on though to her. I feel like I am caring for my son as if he has additional needs , a friend telling me I am overreacting has really upset me ..she hardly ever sees him , I manage to video so many of these episodes without him knowing so I have some sort of proof to show doctors etc as nursery think he is great ..any advice

OP posts:
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Tikeahulilly · 14/04/2025 11:38

@Carol41556

I went to a talk on PDA and your sons role play does sound like it might fit. 💯 no expert!

Of course don't self diagnose but apparently the person doing the diagnosis (and I believe stipulated in guidelines) should look at demand avoidance and hopefully if the PDA profile fits link to that.

Laura Kirby was the speaker I met and also look at Eliza Fricker. Both PDA focused and could help you understand through the info available on website / insta / books etc

Also really think you should ask for this to be moved to SEN board or step away from AIBU as you just get the usual fuckwittery about being a shit mum / nonsense about autism only being applicable if have speech delays (in my journey I now have vocabulary i never knew existed like "higher level language") and so on.

There is also a podcast called "TILT parenting" you might find useful

Take care 🙂 💕

Wishyouwerehere50 · 14/04/2025 11:14

EilonwyWithRedGoldHair · 14/04/2025 11:09

OP's child doesn't sound that different from my DS who has been diagnosed ASD, except that DS is an only child so his violence during meltdowns was only aimed at me & DH. The HV, nursery, and later school, had no concerns either, until around 2021, when he was 7 and couldn't cope with school anymore.

Edited
Show quote history

Exactly the same. My son was incredibly advanced. He was meeting every milestone.

We did have extra behaviour and sounds on top that made no sense to me and in hindsight it's probably obvious. I didn't realise. No HV would have had a single clue. I had alot of people involved supporting me. Never was it raised.

Only in hindsight during assessment did I realise the significance of multiple behaviour challenges I experienced.

My child has PDA features. It's not unheard of to have no issues with certain milestones.

EilonwyWithRedGoldHair · 14/04/2025 11:09

JLou08 · 13/04/2025 18:51

The behaviour is not typical for a 5 year old at all. I'm not sure if it could be autism, I'd be leaning towards it not being if his development is as the health visitor assessed. Part of the diagnostic criteria for autism is delayed communication.

OP's child doesn't sound that different from my DS who has been diagnosed ASD, except that DS is an only child so his violence during meltdowns was only aimed at me & DH. The HV, nursery, and later school, had no concerns either, until around 2021, when he was 7 and couldn't cope with school anymore.

Wishyouwerehere50 · 14/04/2025 11:03

Tikeahulilly · 14/04/2025 11:01

This was on the SEN board a few weeks ago asking same kind of question... maybe that OP has got a bit further.

Not in Scotland but here’s a link from the NAS website
You could also search private ADOS Scotland

www.autism.org.uk/autism-services-directory/a/autism-assessment-scotland

What a wonderful supportive and productive post.

I sometimes wonder if I'm losing myself when I read posts on these threads.

Tikeahulilly · 14/04/2025 11:01

This was on the SEN board a few weeks ago asking same kind of question... maybe that OP has got a bit further.

Not in Scotland but here’s a link from the NAS website
You could also search private ADOS Scotland

www.autism.org.uk/autism-services-directory/a/autism-assessment-scotland

Tikeahulilly · 14/04/2025 10:55

@Carol41556 you need to ask on the SEN mumsnet chat what private recommendations there are in your area / how to navigate in Scotland with school etc

If in scotland, it's easier to delay school entry depending on his birthday - could you do that? As with SEN August isn't that far off... unless scotland is miles better than England local authorities...

Wishyouwerehere50 · 14/04/2025 10:50

Redbushteaforme · 14/04/2025 10:38

Just to add: we had to do all the legwork for the consultation ourselves. Google was our friend in terms of identifying private practitioners who might be able to help.

This is what I did. I had to go totally alone I realised.

I also found you really have much more traction with a diagnosis and a report. The gaslighting, minimisation of my experience and intelligence was absolutely unbelievable in my own experience.

The private practitioner was fantastic. All female which was also wonderful.

My son's assessment included an in school observation without him knowing. Hilarious because the school hid so very much.

For this extensive and thorough assessment I paid £2k OP. An awful lot unfortunately.

Wishyouwerehere50 · 14/04/2025 10:45

Carol41556 · 14/04/2025 10:05

I'm going to go private , but does it need to be a clinic diagnosis that the NHS accept ? I'm not sure what clinic in Scotland offer this

Show quote history

What you need do is look online and find an assessor who follows NICE guidelines on assesment. It's called the ADOS assessment and I'd focus on autism in the first instance.

You just need to check the process is multidisciplinary and will involve at least 2 professionals. You ask if they support follow up if anyone challenges the validity of their process and assessment.

Ask if they're familiar with PDA and if they can consider that.

I don't know how easy it is with the age to identify PDA. My child was 10 by assessment.

There will be experienced psychiatrists running their own practices doing this. If possible, I really do recommend a female!!

Redbushteaforme · 14/04/2025 10:38

Just to add: we had to do all the legwork for the consultation ourselves. Google was our friend in terms of identifying private practitioners who might be able to help.

Redbushteaforme · 14/04/2025 10:35

Carol41556 · 14/04/2025 10:05

I'm going to go private , but does it need to be a clinic diagnosis that the NHS accept ? I'm not sure what clinic in Scotland offer this

Show quote history

We are in Scotland too. We were able to arrange a private consultation with a psychologist who was previously senior NHS so known to local education mental health staff. She didn't do a full assessment but wrote a detailed letter based on the consultation saying that she strongly suspected autism and recommending an NDAS assessment. This letter was a great help in itself. We didn't actually get the formal NHS assessment for about three years due to waiting lists. If the letter hadn't been so helpful in itself we would have arranged a private assessment.

You don't need a formal diagnosis to get a Child's Plan to address additional needs but a diagnosis or professional opinion does help in our experience.

Wishing you all the best. It sounds hard going.

Original poster
Carol41556 · 14/04/2025 10:05

Redbushteaforme · 14/04/2025 09:56

This is not correct. Delayed communication may be a sign of autism but my DD is diagnosed autistic and she has always been highly articulate for her age, has no learning difficulties nor does she have any of the behavioural issues OP has described. However, autism is a very wide spectrum and other conditions may also be present.

OP: no one on here can make a diagnosis for you, but it does sound as if your DS has additional needs of some kind.

You need to press for an assessment. Can you consider paying for a private one rather than waiting for four years? Or is the faster option a PP mentioned a possibility for you?

Show quote history

I'm going to go private , but does it need to be a clinic diagnosis that the NHS accept ? I'm not sure what clinic in Scotland offer this

OP posts:
Redbushteaforme · 14/04/2025 09:56

JLou08 · 13/04/2025 18:51

The behaviour is not typical for a 5 year old at all. I'm not sure if it could be autism, I'd be leaning towards it not being if his development is as the health visitor assessed. Part of the diagnostic criteria for autism is delayed communication.

This is not correct. Delayed communication may be a sign of autism but my DD is diagnosed autistic and she has always been highly articulate for her age, has no learning difficulties nor does she have any of the behavioural issues OP has described. However, autism is a very wide spectrum and other conditions may also be present.

OP: no one on here can make a diagnosis for you, but it does sound as if your DS has additional needs of some kind.

You need to press for an assessment. Can you consider paying for a private one rather than waiting for four years? Or is the faster option a PP mentioned a possibility for you?

Original poster
Carol41556 · 14/04/2025 09:40

coxesorangepippin · 13/04/2025 21:41

  1. What are you doing when he hits people?
  2. Why does he have a tablet?
  3. Why are you assuming SEN? 4. Wouldn't it be easier to think that he's five years old, and still developing? Rather than just jump on the autism bandwagon??

My son has been flapping his hands from a very young age , I dismissed this as normal or just excitement ... but adding all symptoms together as he is now 5 ...there's is definitely something wrong. I'm his mother , and as a Mother, we know when something isn't quite right.
And because he is intelligent , Can interact with others ..sometimes...and nursery think he is fine...who is actually going to listen. I have endless videos of his behaviour to show to a private clinic ...I am not imagining this.

As for his tablet ...right now its sitting in a toy box , and he is playing with his sister ...probably another 10 minutes before it turns violent and he needs to be physically taken away from my daughter incase he hurts her👎

OP posts:
Bigfatsunandclouds · 14/04/2025 09:36

Peony1897 · 14/04/2025 09:20

I’m not being obnoxious but I highly doubt that’s possible. 3 year olds don’t give a crap what others think, that’s why they tantrum in public, often hit etc - they haven’t developed empathy at that stage let alone wanting to blend into the crowd

Show quote history

I can absolutely assure you that this is possible. My child was precocious with their speech and development at that age.

youcannaecallherfanny · 14/04/2025 09:34

Op you’ve described my son. I was at my
wits end and everyone kept spouting the age old crap - all kids are like that, he’s just being a boy, he’s just naughty, he’ll grow out of it, etc etc… the amount of misinformation is staggering.

my son now has a diagnosis of autism, adhd and learning difficulties.

you know your son better than anyone. And if you have a niggling concern, then you should get it checked out. You are your sons advocate.

and ofcourse apply for support for him. Do it yourself, it’s quite straight forward.

You’re going to get told a load of shite from ‘friends’ and folk ‘meaning well’ - my favourite is, we’re all a bit autistic though 🙄 - you will learn to ignore it.

best of luck.

youcannaecallherfanny · 14/04/2025 09:27

Peony1897 · 14/04/2025 09:20

I’m not being obnoxious but I highly doubt that’s possible. 3 year olds don’t give a crap what others think, that’s why they tantrum in public, often hit etc - they haven’t developed empathy at that stage let alone wanting to blend into the crowd

Show quote history

Masking can be subconscious.

youcannaecallherfanny · 14/04/2025 09:26

coxesorangepippin · 13/04/2025 21:41

  1. What are you doing when he hits people?
  2. Why does he have a tablet?
  3. Why are you assuming SEN? 4. Wouldn't it be easier to think that he's five years old, and still developing? Rather than just jump on the autism bandwagon??

Shut up.

Peony1897 · 14/04/2025 09:20

Bigfatsunandclouds · 14/04/2025 09:10

What a load of rubbish, my child masked in nursery too at 3-4 because they wanted to fit in. They still attacked me and had hours long meltdowns at home. They have now been diagnosed ND.

Show quote history

I’m not being obnoxious but I highly doubt that’s possible. 3 year olds don’t give a crap what others think, that’s why they tantrum in public, often hit etc - they haven’t developed empathy at that stage let alone wanting to blend into the crowd

Bigfatsunandclouds · 14/04/2025 09:14

OP it may be ADHD, there is a lot of crossover with autism and your son sounds like my DC. My DC was precocious with their speech and intelligence when young, but all the behaviours you describe happened with them. I've had to fight for anyone to believe me as they were so well behaved at nursery and school and it's only recently now relationships are getting more complex than school realise there was something off.

I paid privately in the end as no one would help, I even called social services at one point as the violence was so bad. They weren't interested either.

Bigfatsunandclouds · 14/04/2025 09:10

Oioisavaloy27 · 13/04/2025 18:24

I am sorry if I came across as harsh, there are a few things that would concern me. Children at nursery don't mask they are to young to even comprehend that they are different and need to copy other children so they fit in, your lack of supervision of your child, how on earth is your child managing to climb on the cooker? That is dangerous if you know your child is doing these things you stop them before they do it autistic or not, you say the child hits your baby why are you allowing this to happen? Why are you not stopping it before it has happened?

I understand it is hard work and your having g a hard time but you really do need to be on top of your child.

Show quote history

What a load of rubbish, my child masked in nursery too at 3-4 because they wanted to fit in. They still attacked me and had hours long meltdowns at home. They have now been diagnosed ND.

ducksinarow123 · 13/04/2025 23:27

Your update answers my question which was are your other 3 children girls by any chance? And I’m guessing from the photo they are and he is the only boy. Now people can spew all the talk about how young kids are all the same etc, but I’ve raised 5 kids (a mix of boys and girls), and I’ve worked in education for 10+ years and I knew from you saying - it’s not how I’ve raised them because my other 3 don’t behave like this, that the other 3 were girls who are (go on, hate me for the stereotyping), in general, “better” behaved (parenting is just as hard but it is different). That is why they might not be behaving in the same way and lashing out as much.
from what you’ve said, it doesn’t scream ASD to me, but definitely not a mentally healthy child either. Maybe adhd, maybe BPD, maybe just too much screen time. I definitely think reaching out for help from GP, or even social services is a good idea. They are there to help and support and can signpost you in the right direction.

Nursingadvice · 13/04/2025 23:17

JLou08 · 13/04/2025 18:51

The behaviour is not typical for a 5 year old at all. I'm not sure if it could be autism, I'd be leaning towards it not being if his development is as the health visitor assessed. Part of the diagnostic criteria for autism is delayed communication.

This isn’t quite right. Communication is part of it, but not necessarily delayed communication. Many, many children with autism can communicate well enough to ‘pass’ the HV developmental checks. But their communication style may not be usual. They can still hit their milestones though.

Peony1897 · 13/04/2025 23:07

coxesorangepippin · 13/04/2025 21:41

  1. What are you doing when he hits people?
  2. Why does he have a tablet?
  3. Why are you assuming SEN? 4. Wouldn't it be easier to think that he's five years old, and still developing? Rather than just jump on the autism bandwagon??

Agree.

Screens and in particular tablets are strongly linked with anger, speech issues, and lack of emotional regulation in kids.

Yet when a parent is reporting these exact symptoms, and says their kid has a tablet, everyone jumps straight to ‘ASD ASSESSMENT’

Peony1897 · 13/04/2025 23:05

I knew the moment you started writing the word ‘tablet’ would be involved somewhere. Ditch the tech, it’s linked with almost all the issues you state.

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