To think DS doesn’t haveautism

[TakingItall]

So the word autism has never been said by professionals. He is going through a asd assessment but I know this doesn’t mean he has it. He was non verbal until 4 and a half now he is saying some words like “bed” “milk” etc. He doesn’t like routine but that might just be him as I am the same. He understands things like get your shoes or coat. He doesn’t like being wet he will freak out but I don’t know anyone who would like to get wet when they are dressed. School said he will gag if children in the school hall are having pasta or something but maybe he just doesn’t like pasta. He won’t socialise with other children but I like to be left alone too. School says he has no sense of danger but surely this is normal for 4 year olds.

They are trying to aim asd at him and I don’t think it’s fair as he’s only 4 and they need to give him time to develop

A diagnosis isn't something to be afraid of - it will unlock support and help for him. It's a good thing that the school are so on the ball with this - they're trying to do the best for him.

What are you doing already to support him? That might help with giving you advice.

@TakingItall who did you have EHCP meeting with? I assume (if in England) your DS is in reception year. Arrange a meeting with class teacher and SENDCo (name and contact details should be on school website). But can arrange through class teacher. It would be ideal if partner is there too as you will both hear the same messages.

Neurotypical 4yos, in school, are busy, social, and enjoy chatting to their friends.
The fact that your DS isn't, should be concerning to you. Being non-verbal until 4.5 is particularly concerning. How was/is his physical development? Did he meet his milestones?

Yes, he is delayed from what you've described, and perhaps there is Autism there as well. But it sounds more like a general developmental delay, rather than specifically Autism.

It’s really sad that you’re holding him back from flourishing with the support he clearly needs but won’t get without a diagnosis

It was with his nursery around July

This is something you could be channelling your efforts in to.

Getting more S&L therapy.

Is private an option?

Do you work on it every night? That’s what I did with my ND speech delay DS

You need to acknowledge the fact your son needs further support and most likely has autism rather than burying your head in the sand.

Your son isn’t just “delayed”.

“Delayed” may be a 24-30 month old who has just started putting a couple of words together.

Your son is 5 in February, the fact he can only say single words is concerning.

You need to start advocating for your child and pushing for help, speak to your schools SENCO. The reason some struggle with autism diagnosis so much is because their parents were completely unphased and didn’t put in the work to get their child the help they need.

Op do you have a job?

I can look into private. Yes he has flash cards from his speech and language therapist

Sorry I clearly got angry remembering what my mum had done and snapped at you. I'm sorry for that

I was diagnosed with autism and adhd in my 30's and my dd was diagnosed 6 months after me. She can make eye contact, isn't fussy about food, can talk and is very clever.

But she also gets really overwhelmed, can't process her feelings or her body signs of hunger tiredness ect, her meltdowns were awful she would really really hurt herself

The process is easier than you think. The fact he's been accepted for an assessment means that half the hard work is already over ( for lots of parents even being accepted for an assessment is a huge battle )

So now, all you really need is for nursery, you, your family members to just tell the asd team what you have all noticed about his behaviour. They will probably meet with him a few times too. And they make it fun for the kids

The assessment for kids isn't anything terrible, they have to read a book, do some imaginative play and somthign else I can't remember. All very stress free and easy

The asd team should offer you a parenting course on having an autistic child,

Life will be a lot easier for him and people will be more understanding and supportive of his behaviours and needs

My DD is so much happier in herself now she knows how her brain works

@TakingItall have you been given guidance by speech therapist?

That didn’t answer my question

EVERY nigbt you need to be working on this op

yep

It's less likely to lead to support that they wouldn't already get at age 4 because that support would be offered regardless if a diagnosis but it's nearly impossible to get any support once older without the diagnosis in place as other in this thread have outlined.

@TakingItall did school not have a meeting with you before DS started school or soon after, to discuss his needs?

When you have your meeting with school, tell them you get overwhelmed and they need to tailor their meeting with you accordingly.

Sounds like ASD could come from yourself.

Well even if he is autistic, you're not going to be fighting people off with a big stick wanting to help him. There's no support for families of disabled children, so assessment or not, nothing will change except he might grow up with an understanding of himself.

For what it's worth he doesn't sound neurotypical. At all. But they can't assess him without your permission and the waiting list is incredibly long.

I understand OP. My 9 year old is autistic and I suspect my 6 year old is autistic too.

No one wants their child’s live to be difficult for them. But assessment means a team of professionals deciding if he is autistic or not. Even if he is diagnosed as autistic it doesn’t mean he won’t go to main stream school.

My autistic children are loving and give eye contact.

You need someone to come to the meeting with you. There is a stong genetic link with autism, with the concerns around your child and your family history there is a chance that you’re autistic too and you may find this situation even more difficult to deal with. I find the situation difficult to deal with and I was a teacher for years so meeting with teachers don’t intimdate me.

In theory support should be based on need not diagnosis but it doesn’t work that way. You need to push for assessment. Saying only a few words a 5 is well beyond being a little bit delayed. Is he learning in school?

OP please do not be afraid or resist your son being assessed for ASD. If he doesn't have it he won't be treated for it, but its really good to be on a SENCO pathway as soon as possible especially with a child who is inexplicably delayed and who doesn't have speech delay due to something like neglect.

This is a really good thing and hopefully your son will get the help he needs to assist with his development. Labels aren't a negative thing it just means if he is on the spectrum, he will have access to more support. Xx

My child has autism and has great eye contact. Autistic people can be loving too. I think your understanding of autism could be improved upon. It doesn't present the same in all people.

Right. So then why not wait until things are clearer? As far as I can tell a diagnosis of ASD at 4 tells you absolutely nothing in terms of how that child will necessarily develop/ what needs they are likely to have longer term.

I wouldn't worry OP, let him get whatever help he needs now and if he doesn't meet the criteria of autism in a few years then he just won't need extra support.
They'll be able to see that.
It does happen that some children need help in infancy and then can manage with no extra support etc
It will make life easier for him at school.
Like imagine he needed toilet?
And the teacher hasn't got the time to be noticing non verbal cues?
But a 1-1 would
So take whatever help is offered and keep advocating for him

Kindly, YABU.
The kind of speech he has now I’d be concerned about in a just turned 2 year old. It may not be autism, it could be a developmental delay.
The school will see lots of 4 year olds, if he has ‘no sense of danger’ it will be significantly more than the other kids. Ask for specific examples.
Him gagging at other children eating foods he doesn’t like such as pasta is also unusual.
I agree there’s an issue of over-diagnosis, but with your son sounds like there’s a profound disability or delay, I’d accept any support. It’s easy to be in denial about it, but your son is your son and you’ll love him just the same regardless of diagnosis.

@TakingItall

I had my son assessed. One NHS paediatrician wanted to diagnose without an ADOS screening. I insisted on it, and after the screening a different NHS paediatrician didn’t diagnose.

The school were attributing behaviours to him because they believed he had ASD. Where he did need help was his speech.

We got a Language Disorder diagnosis (which they wouldn’t diagnose if he had been ASD). Lots of speech input. Noone is suggesting ASD now.
Read ‘Age of Diagnosis’ Radio 4 book of the week.

From my experience it’s very area dependent on what is available. I don’t think there’s many things that require an autism diagnosis (other than maybe autism parenting workshops and specialist autism schools), but it’s a lot easier when asking for referrals to services and applying for EHCPs to give them an autism report which confirms there’s a neurodevelopment disorder and details the child’s needs.

edited to add that the children’s sleep clinic in my area also required a diagnosis and this was a very important service for us.